The Daily Activities of a Client on the Autism Spectrum in the Transition Adult Services Program (TAS)
Abel, a client in the Transition and Adult Services program who is on the autism spectrum shares about his daily life. He discusses his job at the Institute for the Redesign of Learning, major in college and much more. Click to learn hear how he is soaring over the competition and making his dreams a reality.
Host: 0:20
Thank you for joining us for another episode of I am able the goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities
Jamie Lord-Tovar: 0:42
Hello everyone and welcome back to I am able podcast. My name is Jamie Lord Tovar. And today I have with me a special guest, Abel Villanueva. Sorry, how are you today? Abel?? Good, good. Now, Abel and I used to work together a few years back, and he agreed to be on the podcast with me today. So, I appreciate you being here. So Abel, can you tell me? Where is it that you work? And how long have you been there?
Abel Villanueva: 1:17
So currently at South Pasadena? Okay, I’m at I’m at the headquarters.
Jamie Lord-Tovar: 1:26
So you’re Go ahead. Sorry. Well,
Abel Villanueva: 1:29
I’m at the headquarters in South Pas. I work at IRL since eight years ago.
Jamie Lord-Tovar: 1:42
Oh, wow. So how so? What is your job title?
Abel Villanueva: 1:49
So basically, I’m a, I’m an assistant.
Jamie Lord-Tovar: 1:54
Okay. Cool. So, have you been doing that? So, you work for the Institute for the redesign of learning? Right? And you work in the corporate office? And have you always been an admin assistant? Or is this a new job for you?
Abel: 2:11
Oh, it’s always been. Okay.
Jamie: 2:14
So, what does a typical day at work look like? For you?
Abel: 2:20
Basically, just go in, and then just talk to my, the, my boss, tell me what my tasks are and then go into it.
Jamie: 2:37
Okay, so you typically so you, you work how many days a week occurred three days a week. Okay. And so when you’re at work, you know your boss, he writes grants, what is that? Right? Yes. Okay, so you help him? So do you do like research? What kind of things do you do besides just like reading your email?
Abel 3:04
Well, like later on, later on he’s kind of teaching me about submitting the grant.
Jamie: 3:12
About what I’m sorry.
Abel: 3:15
Later on, like he will actually teach you how to submit. submit grants.
Jamie: 3:25
Oh, cool. Oh, nice. So you’ll you that’s not something that you currently do you do all the research?
Abel: 3:33
Yeah. So, I’m going to practice it. Other than that, I do. Like photography. Uh huh. Um and, um, what else I go to events? For photography actually, might and right, like interviews for various programs that we have one recently like in the last couple of hours. Oh, really? Yes.
Jamie: 4:18
So, you get to be the interviewer then is that right?
Abel: 4:24
Yeah. I think like we’re like today we have we have like a master. Stuff for a master, we had we had that.
Jamie: 4:35
So what kind of so what kind of questions do you ask your when you do your interview? Are you asking them about their jobs or
Abel: 4:44
Well, that into introduction then. Then COVID related stuff. related stuff. Okay. Yeah. So, I just first had to practice asking the questions. And when I went to feel ready that we’re, we’re actually recording the interview.
Jamie: 5:15
Okay, so a little different than how we’re doing it because we just practice just for like a second, and then we’re just we’re just going for it today. So how do you So which do you prefer? Now that we’ve gotten started on our interview? Do you prefer to be the person who’s doing the interviewing or do you prefer to be the interviewee?
Abel: 5:42
Uh, well, Interviewer But, yeah.
Jamie: 5:52
It’s tough being put on the spot, isn’t it? A little bit? Yeah. That’s okay. You’re doing great, though. So you were saying that you typically do just like admin, administrative things. When you’re there? Three days a week, and you help do research for grants. And then you because you have an interest in photography, you’re able to do all these extra things for work where you go and interview people. Right?
Abel: 6:26
Photography then video. Okay, so
Jamie: 6:29
you do video and, and photography. Oh,
Abel: 6:31
yeah. So, I think a couple years ago, we had a interview for a current like former client on TAS then we had to do like a video interview. Okay. They’re not the words. We went took a couple shots for, you know, for the presentation. Okay, so and that’s the words, since I like editing stuff, so I could edit the clips, and our music and all that and put, put subtitles for the for like our Spanish or Spanish parents.
Jamie: 7:25
Oh, cool. So, you do like you do it all then when you
Abel: 7:31
Oh, I help Gabriel. So technically we work for the same project?
Jamie: 7:35
Uh huh. But it sounds like, for me when I do these interviews. I have I have other people. I just do the interview part. I, I do the questions and I do the interview part and then somebody else does everything else. But it sounds like you have to do all that extra work. That’s so important to the production. Right
Abel: 8:00
but afterwards you have to send it to the approval team
Jamie: 8:04
right? Yeah, so yeah, but still that’s a lot of work. Wow. So that sounds cool. Now what part of your job are you the happiest with what is your favorite part of your job? Then do you think
Abel: 8:20
well like me doing for photography so recently for the for photography stuff. We had an auction I took photos for the for an auction that happened a couple of months ago. Okay. Were various items so
Jamie: 8:41
Oh, you did that you took all the pictures
Abel: 8:43
not all of it. Like some okay
Jamie: 8:49
that was the one for was that for Westmoreland.
Abel: 8:53
Westmoreland
Jamie: 8:58
I remember that. Yeah. Those that you took some nice pictures.
Abel: 9:04
Yeah, so sometimes you have reattribution reshoot some shots so just in case you don’t doesn’t look like nice, some justice and all that. Okay.
Jamie: 9:21
So you do that. When you get started, you took extra shots just to make sure that you had
Abel: 9:28
had good pictures of the kids like Lisa, if the image doesn’t look right. Or needs some adjustment, so just go back and retake it. Okay. All right.
Jamie: 9:46
So you so photography is still your passion. Is that right? Yes. And are you in you’re still going to college? You still go? Yeah. What what are you taking? Right now, what classes are you taking?
Abel: 10:02
Oh, I haven’t enrolled yet. enrolling in classes, so I should do that, like, next week.
Jamie: 10:08
Right. The next semester should be starting up. What does the next semester start?
Abel: 10:14
See for the 3rd? Oh, wow. So I’m not sure if they still haven’t remote though.
Jamie: 10:23
Oh, it does make going to class a little easier. I think when you’re in college, what do you think with the remote learning?
Abel: 10:31
Yeah, but for photography, since I my take light, light too. Buy into you need like, equipment. Our equipment, but also, they let you Go in Like a studio will take photos there.
Jamie: 10:52
Oh, cool. So you’re still going to is it? Is it Glendale? GCC? Okay, so Glendale Community College? Yeah. That’s, uh, do you like the school?
Abel: 11:07
Yeah. Haven’t been in campus for the last two years? Yeah. Yeah.
Jamie: 11:18
Yeah, that’s, I miss being on the campus sometimes. But it has been nice because I just finished another degree recently. To be able to be on campus, but also not having to drive which is nice, too. Which, which brings me to so. Speaking of driving, do you drive? No, no. So how do you get around?
Abel: 11:49
I take the take the bus.
Jamie: 11:51
You take the bus? Yeah. Do you still do you take like, take Uber
Abel: 11:57
and sometimes ride sharing. Or have my folks drop me off? Oh, okay.
Jamie: 12:05
So are you are you still living at home?
Abel: 12:10
Yes. Yeah. It’s my folks.
Jamie: 12:13
Okay, so just you and your parents.
Abel: 12:16
Well yeah, with my brother and my little sister. Nice. Yeah.
Jamie: 12:21
Cool. So do you like your living situation? Do you like Yeah. That’s it’s nice to have family around, isn’t it?
Abel: 12:32
Yes. Yeah.
Jamie: 12:38
So, who do you go to when you need when you have problems at home? Who do you go to? For?
Abel: 12:47
my dad? Yeah. Yeah.
Jamie: 12:51
Your dad’s a pretty smart guy. Yeah, yeah. It gives you good advice. Yeah, yeah. And then how about at work? Who do you go to when you have issues at work or you need support at work?
Abel: 13:09
I see my job coach then. Gabriel?
Jamie: 13:13
Okay. Oh, nice. So, you’re you have the support of your boss, Gabriel. And then also your job coach Sandra, right. Yes. So what kind of things does Sandra help you with?
Abel: 13:26
Well, oh, my advices
Jamie: 13:32
she, I’m sorry. She gives you advice?
Abel: 13:34
Yeah. Good tips. see pretty much it for now. Yeah, yeah, she’s just starting. Working with me over a month.
Jamie: 13:51
Okay. Okay, so, so pretty new, then. How many do you so you’ve, you’ve been there for eight years. Do you know how many job coaches you’ve had in eight years?
Abel: 14:10
Let’s see, I think like. Not sure it’s like eight or seven. But I don’t know. It sounds about right.
Jamie: 14:21
So it’s because Abel, you’re, you’re one of those guys who is so good at their job that that when we have newer job coaches, and I was one of those two that that we support Abel because he is pretty efficient. Right? Would you say that? That’s true, Sandra. He just needs a little bit of support. And you know, just like we all do, honestly. Abel does a great job.
Abel: 14:53
Not just job coaches, but like development associates I work with so yeah, they’re good people. Gabriel is he’s the fourth one. Oh, wow. Yeah, since I started working
Jamie: 15:07
Oh, wow. So, you’re one of those guys who kind of has to be okay with change because you have a lot of change as far as like support and who you report to right?
Abel: 15:19
Yeah. No, all like some of us are supportive. So cool
Jamie: 15:33
All right, so let’s see. Oh, so we talked about that, that you are a photographer and you like to do some filming? Are there anything? What else do you think that you’re really good at?
Abel: 15:50
Well, graphic design base, basically. Oh, yeah. Yeah.
Jamie: 15:58
Can you describe something that you’ve done recently?
Abel: 16:03
Logos? Like design a website? Oh, cool. Yeah, I like to see that’s pretty much it.
Jamie: 16:14
So, websites for yourself or for other people or
Abel: 16:20
portfolio
Jamie: 16:22
for your portfolio?
Abel: 16:24
Then general art that’s another major almost done with that just says just the pandemic like I need to go be in the in the in the campus to finish the last class. Okay. Yeah.
Jamie: 16:46
So that you have just one the last one last class before you’ll graduate.
Abel: 16:52
Not graduate but finished, like a degree certificate.
Jamie: 16:57
Okay. So you’re going for a certificate. Okay. And so, is that your certificates in graphic design or?
Abel: 17:07
General Art?
Jamie: 17:08
Just general art? Oh. Sweet. And then so after you get that certificate will you continue on with school? Do you think no idea you don’t know yet? Least Are you still enjoying school?
Abel: 17:28
Kind of. Yeah.
Jamie: 17:33
I myself was I was ready for a break. But I’m glad that you’re still you’re still in school. I mean, with art, it’s there’s so many things to learn you and so many different aspects. So, you know, I you could probably just continue on for as long as you wanted at Glendale?
Abel: 17:50
Yeah. Yeah.
Jamie: 17:55
So Abel, if, if you were ever to stop being an admin assistant for IRL what? What job would you want? What jobs?
Abel: 18:15
Um Let’s see probably? Me doing photography or like, just design? Do some graphic design, like logo design? All that?
Jamie: 18:30
Yeah. So, do you think you’d want to work for yourself or for another company? Like you work for a company now?
Abel: 18:38
I’ve seen for another company for now. But
Jamie: 18:46
yeah, it’s really hard to promote, promote yourself. I mean, it takes a lot of work to promote yourself, especially in art. So, I think it is it’s better to, to work for another for somebody else. Then you also have you, you have that security of, of working for somebody else and not always having to, to chase clients and you know, and try to make money. So so when you make logos so, you know, I did a little bit of graphic design to you, you know, we you and I had a few conversations about being an artist and I take in like Photoshop and some of those things. Which, which one do you like the best because I know you know several different types of applications, right?
Abel: 19:48
Yeah, Photoshop as an illustrator InDesign same pretty much it.
Jamie: 20:02
Okay, so and when you do logos, what do you use? Which one do you use? Or do you use them? All?
Abel: 20:12
Um, I just I just like create like no sketches so what was it look like make like a couple revisions and try to find the right colors the right set of colors for my logo. Okay. Yeah, so the fonts so
Jamie: 20:53
have you ever tried to make a logo for somebody else? Like, like someone’s like, Hey, that’s a cool logo. Can you make something for me for my business?
Abel: 21:03
No
Jamie: 21:05
No? I tried to do that. And it was it was really frustrating, you know, not knowing kind of having an idea of what the customer wanted, but not getting exactly what they wanted. It got to be a little frustrating. So I was I was gonna ask you for some advice, but I guess we’ll have to meet to get advice for from you about some other stuff. Yeah. Cuz you’re very talented. Very talented. Okay, so I’m going to go back to You said earlier that you had interviewed somebody just earlier today. Can you tell me about anybody else that you’ve recently interviewed?
Abel: 22:00
Yes, I’ll say mental health we did that one. That’s the other reason. Okay.
Jamie: 22:15
And so what kind of things do you did you ask?
Abel: 22:21
Basically, almost the same, the same? Almost the same questions but some are specific for the for the program.
Jamie: 22:29
Okay, so when so you do like similar questions when you’re doing interviews? I Yeah, it depends on who I’m interviewing to. Some of the questions are a little bit similar let’s see. Is there anything else that you do in your free time besides photography and graphic design?
Abel: 23:02
No, no,
Jamie: 23:04
No? go to movies or play video games
Abel: 23:07
I play video games or walk in the mall
Jamie: 23:12
Oh, nice. Okay, so you alright, so is that the kind of stuff you do on the on your days off go to the mall play video?
Abel: 23:20
Yes. Yeah. See home mostly especially. Especially like right now? Yeah, yeah
Jamie: 23:36
so, let’s so what about work or home are you most proud of? What do you think is like your biggest accomplishment?
Abel: 23:54
just getting them getting the work done efficiently. So, recently at the San Gabriel Rotary Club actually showed my the video I work on. Oh, really? Oh, wow.
Jamie: 24:24
That must have been exciting. Yeah. That’s cool. I would be proud of that, too. So where are you? So were you there to watch it when they watched it or?
Abel: 24:41
Yes. Yeah. Just we’re actually for take pictures too. That’s another thing. Oh, okay.
Jamie: 24:57
So, Abel, do you have any role model
Abel: 25:02
Not currently no, no.
Jamie: 25:05
Nobody that you look up to
Abel: 25:07
my folks.
Jamie: 25:08
Your folks. Okay, well those are great role models.
Abel: 25:10
My dad especially because he also works at the company TES. Right. Yeah. Well, he’s in transportation.
Jamie: 25:25
Right? Yeah. Everybody loves your dad. He’s a good guy. Which probably is why everybody loves you too, because you’re also a good guy. Like,
Abel: 25:39
yeah.
Jamie: 25:45
So is there anything else? I think I’ve gone through all of the questions. Oh, I didn’t ask you what was the most challenging part of interviewing people
Abel: 25:56
the most challenging part is seeing the research. Like find the right the right permission. Yeah, yeah. I took like some news. I did, like some companies are furnished, furnish does have the, the, the necessary permissions they have to. to type it in and submit. Yeah, especially for grant for some certain subject, like, like playgrounds or, or electronics for the for the classrooms. They’re like, less, less results. Why? When I type it up?
Jamie 26:51
Oh, I see. Okay. So just not having all the like, the information that’s readily available. That’s yeah, that is pretty challenging. And it’s pretty challenging. Alright, so is there anything else that you would like the audience to know?
Abel: 27:16
No, no, it’s pretty much it. Yeah.
Jamie: 27:24
All right. Well, I appreciate you taking the time to talk to me today. Especially when we didn’t do we, we, we did our interview a little bit differently than then you’re normally used to. So I do appreciate you doing this on the fly with me today. And I hope that we can talk again soon. All right. All right. Well, thank you so much, Abel, and thank you everybody out there for listening to I am able podcast. Have a great day.
Abel: 28:00
Alright. See you soon. All right.
What is a Job Coach?
Lin Long, a job coach that works at Westmoreland Academy who has been with The Institute for Redesign of Learning for six years was interviewed. Lin, discusses her career journey and how she became a job coach, who she works with, gratifications and more.
Host: 00:01
Thank you for joining us for another episode of I am Abel. The goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities.
00:20
Jamie Lord-Tovar: Hello everyone and welcome back to I am able I’m Jamie Lord Tovar, and today I have as my guest, one of my friends and coworkers Lynn long are you doing Lynn.
00:24
Lin Long: I’m good it’s good to be with you.
00:26
Lin Long: Thank you for having me.
00:28
Jamie Lord-Tovar: Thank you, I appreciate you taking the time to talk with me I.
00:32
Jamie Lord-Tovar: Last year, when we started this podcast we.
00:37
Jamie Lord-Tovar: We started with a couple of.
00:40
Jamie Lord-Tovar: Actually, three of our adult workers from adult transition services and a couple of them.
00:48
Jamie Lord-Tovar: are actually all three of them talked about their awesome job coaches, and so I thought well you know what.
00:55
Jamie Lord-Tovar: Maybe I should have one of those awesome job coaches on my show, since she is a friend of mine so.
01:00
Jamie Lord-Tovar: Thank you so much Lin for coming so.
01:06
Jamie Lord-Tovar: So, Lin how have you how long have you been a job coach.
01:12
Lin Long: Ever will be six years.
01:15
Jamie Lord-Tovar: It seems longer really my.
01:20
Jamie Lord-Tovar: Mind oh.
01:22
Jamie Lord-Tovar: It does that just seems so I’m real I can’t believe it’s been that wow.
01:31
Jamie Lord-Tovar: Well, no wonder, so it.
01:33
Jamie Lord-Tovar: makes perfect sense.
01:35
Jamie Lord-Tovar: So.
01:37
Jamie Lord-Tovar: So here so. yeah.
01:40
Jamie Lord-Tovar: So, do you need any special licensing or any special training.
01:45
Jamie Lord-Tovar: to become a job coach.
01:49
Lin Long: um No it’s a lot of its common sense.
01:53
Lin Long: mm hmm and you have to have.
01:57
Lin Long: Your bpp certificate your first aid and CPR life so.
02:04
Lin Long: Okay, so.But the company.
02:07
Lin Long: The company will provide that for you to if you don’t have it, but if, if you want, you can do it on your own to so.
02:14
Jamie Lord-Tovar: Nice, oh that’s good okay yeah so you have you have like some training.
02:21
Jamie Lord-Tovar: And then you also have to pass like.
02:23
Jamie Lord-Tovar: screenings right like from the FBI and that.
02:27
Lin Long: kind of stuff.
02:28
Jamie Lord-Tovar: When you get hired oh yeah.
02:31
Jamie Lord-Tovar: So we make sure that everyone is.
02:32
Lin Long: Safe your normal.
02:35
Lin Long: you’re okay.
02:38
Lin Long: yeah exactly.
02:41
Jamie Lord-Tovar: And so.
02:44
Jamie Lord-Tovar: What does a job coach do exactly for those of I mean, of course, I know, but for those of us in the audience what do job coaches do.
02:59
Lin Long: Well, we do quite a bit um we implement coaching strategies we it helps them to help the clients to overcome.
03:12
Lin Long: related challenges, you know and maintaining accurate records.
03:19
Lin Long: on them.
03:20
Lin Long: Okay.
03:21
Lin Long: um we’re mandated reporters I’m where I meant.
03:27
Lin Long: We support them, we work with them we’re just we’re everywhere we’re everything to them to you know.
03:35
Lin Long: Right um it’s in its responsibility.
03:41
Lin Long: So.
03:43
Lin Long: Absolutely um but we work with them to.
03:47
Lin Long: You know, we.
03:50
Lin Long: want to say this.
03:52
Lin Long: We provide skilled training, you know works field training for them um we want to get them as independent as possible.
04:01
Lin Long: Right um so life skills come in, you know play a big role in their life so.
04:10
Lin Long: Okay, see that.
04:12
Jamie Lord-Tovar: I’m sorry, so you not only help them with like their actual jobs, you help them with everything there other life skills.
04:23
Jamie Lord-Tovar: things that have to do with the job.
04:26
Jamie Lord-Tovar: or like things that probably people don’t think of like hygiene or, like you, I would sometimes like transportation and things like that, like how to get to and from your job right I.
04:40
Jamie Lord-Tovar: mean it’s just like it’s.
04:42
Lin Long: Huge I mean I also look at it, as parenting skills do.
04:49
Jamie Lord-Tovar: Well, I mean pair good parents are coaches, I mean the whole rain, I mean that’s the whole idea is you coach your children to.
04:57
Jamie Lord-Tovar: To succeed so same thing right.
05:03
Lin Long: that’s right you want them to be safe, with you to.
05:07
Lin Long: You know and I’m just an advocate for safety precaution all the time.
05:15
Lin Long: um you know I want, I want to make sure they’re getting home safe to.
05:19
Jamie Lord-Tovar: yeah you know.
05:22
Lin Long: uh you know and they’re treated properly.
05:28
Lin Long: So, I don’t know there’s a lot that goes into this, I mean I just can’t stop with just a cup.
05:36
Lin Long: Because it just keeps going on and on and on.
05:38
Lin Long: You know and it’s just in there’s always something that you’re adding to your work, something new there’s always something new.
05:50
Lin Long: I’m learning something new, today, you know I have it that way, in case if I’m not there they’ll know how to fix a vacuum.
05:58
Jamie Lord-Tovar: Right.
05:58
Lin Long: or don’t know how to glue something together, you know it’s just not it’s just not working it’s also fixing things.
06:07
Jamie Lord-Tovar: Okay, oh Nice.
06:09
Lin Long: Or how to wind up how to wind up a chord in like daisy chains or something you know just something fun.
06:16
Lin Long: Too. You know.
06:18
Jamie Lord-Tovar: Right.
06:20
Lin Long: You know, and if they you know, usually it’s just they’re just sitting with one parent, so I always tell them, you know what if something breaks in your home you’ll be able to fix.
06:31
Lin Long: you’ll know how to fix it and you will have to call somebody to fix it and drain you drain your pocket book.
06:40
Jamie Lord-Tovar: Right when.
06:41
Linda Long: I go beyond what I’m supposed to do, but you know I enjoy it yeah.
06:47
Jamie Lord-Tovar: Well, you can definitely tell.
06:49
Lin Long: huh?
06:52
Jamie Lord-Tovar: You can definitely tell you definitely tell that you’re dedicated to your clients you’re the crew that I see you working with.
07:03
Jamie Lord-Tovar: But so, you work right now.
07:06
Jamie Lord-Tovar: You primarily work with the crew at Westmoreland is that right.
07:12
Jamie Lord-Tovar: that’s your main and yeah.
07:15
Jamie Lord-Tovar: So, and that is now.
07:17
Lin Long: I use to work at Almansor Academy.
07:20
Jamie Lord-Tovar: Right okay.
07:22
Lin Long: I worked there for four years.
07:24
Jamie Lord-Tovar: wow and then.
07:26
Lin Long: On to Westmoreland okay.
07:30
Lin Long: So I had two of them follow me over there.
07:33
Jamie Lord-Tovar: Right, yes, yes.
07:37
Jamie Lord-Tovar: It can’t get enough of Lynn well, you are, I mean you are amazing so and just watching you and how you, you know you interact with your clients and you know you it’s very obvious that you know you care for them a lot, and you treat them with a.
07:56
Jamie Lord-Tovar: great deal of respect and you expect them to treat you with the same.
08:01
Jamie Lord-Tovar: amount of respect and you know I think that’s.
08:05
Jamie Lord-Tovar: They can tell that that you’re very dedicated than that you, you truly love them, I mean they’re very lucky.
08:14
Lin Long: Teaching respect to them is major yeah you know, they also learn people skills.
08:23
Lin Long: Or else they’ll just go off on their own, and you know, maybe lash out at somebody but.
08:30
Lin Long: You know, we have our you know, we have our morning meetings.
08:35
Lin Long: You know I want to make sure everybody’s you know sound mind are ready to go.
08:40
Lin Long: Or if there’s a problem, we need to fix it um if you need if they need some somebody to talk to right away, then we talk, you know I, you have to make yourself accessible at all times.
08:54
Lin Long: You have to be willing to jump into any conversation that they may have it, whether it makes sense or not, you know you’re giving an ear to them it’s just so they’re being listened to and that’s some that’s a major part of this job is listening. Right, you know. Because that’s all they want is someone to listen to them. You know I even have students from other classrooms that come to me and want to just be listened to. And I will give my ear to them, you know it doesn’t matter where I’m at you know as long as I can keep my eye on you know, on mine, you know we’re talking and I know where they’re at at all times, you know yeah. But I give my ear to anybody at the school, you know.
09:47
Jamie Lord-Tovar: including my own. it’s so awesome. yeah. that’s amazing when you’re so you’re so good you’re so dedicated we really appreciate you.
10:03
Lin Long: Well, I appreciate the opportunity to be able to work with you know with them out, you know.
10:12
Jamie Lord-Tovar: Right, I mean, so you work with people with all kinds of special needs right I’m some sort of.
10:21
Lin Long: pretty much yeah, I’ve got a down syndrome. And I’ve got two that are autistic.
10:31
Lin Long: You know I mean it’s not one of them is the same so.
10:36
Lin Long: it makes work very interesting.
10:41
Lin Long: So yeah but.
10:45
Lin Long: You got to be on top of things so.
10:47
Jamie Lord-Tovar: Right, but you can see just how proud, they are of themselves, you know and how happy, they are to be like.
10:56
Lin Long: Productive like.
10:59
Jamie Lord-Tovar: You can see it that you know they know that they are contributing.
11:05
Jamie Lord-Tovar: it’s really quite cool to see it, and then they know that you know that they’re like a good crew it’s.
11:15
Lin Long: Well they’re making their own money because money is a big factor for them in my group, not so much they really don’t even talk about money.
11:23
Jamie Lord-Tovar: really talk more about.
11:24
Lin Long: Family oh.
11:26
Jamie Lord-Tovar: Okay, oh yeah.
11:27
Lin Long: You know yeah family and food.
11:32
Jamie Lord-Tovar: makes them happy. Well hey those are. Those sound like some good. Good subjects definitely.
11:47
Jamie Lord-Tovar: So, how did you become a job coach.
11:51
Lin Long: Well, it was funny my I used to live in Kingsborough in the in the San Joaquin Valley, I also used to live in Fresno. Oh yeah that’s also my old stomping grounds, I was in the field of.
12:07
Lin Long: private care for 27 years and I thought I would never get out of it. yeah, I need I need a change, you know it’s just it I loved what I did, but it was just. Really mentally draining and physically and it was physical it was just I was just always in pain. physically because of the work that goes into that you know. People with like stroke victims’ people that were bedridden that couldn’t get up, you have to shower them, you know I mean it was just all the time yeah it is off nothing but on my job had ended and it in it the. The timing couldn’t have been more perfect. But my cousin called me and she said that she needed help, so I packed my stuff up but it all in storage and I moved back home to LA where I’m originally from. um yeah and then we were I was trying to look for a job, but all I was looking in seed sometimes you limit your abilities, you know well you know apparently God seen more in me than I saw myself. yeah well, I said Okay, you know she goes well TAS is always looking for job coaches and I said well tell me more so she explained the whole thing she used to be a teacher manager for like 20 years.
13:42
Jamie Lord-Tovar: Oh wow.
13:44
Lin Long: yeah so um but anyway, she told me how to get there, and you know go set up an interview, and this and that, and you know do corporate and whatever um so, and here I am.
13:56
Jamie Lord-Tovar: wow.
13:59
Lin Long: And it couldn’t have been a it couldn’t have been a you know, a better job for me.
14:04
Jamie Lord-Tovar: Right.
14:05
Lin Long: I met I really, I loved what I did, but it was just time to let it go. Right, but on the timing couldn’t have been more perfect so and I’m, but it was just like a whole new different world for me. I’m like okay what am I getting myself into. I experienced quite a bit, and it was quite overwhelming in the. Beginning which lasted I would say, probably a year or two.
14:45
Jamie Lord-Tovar: Oh wow.
14:46
Lin Long: It was like this, you know, trying to get to know your clients. Their behaviors. You know I meant and that’s one thing you become is a pretty good behavior specialist.
14:59
Jamie Lord-Tovar: Right yeah.
15:02
Lin Long: So, I was just like I had a dive in with both feet, you know and arms, so I just like you know I’m here I’ve got to just dive in dive into my work, you know. it’s basically common sense.
15:20
Jamie Lord-Tovar: But when dealing with. People it’s really, it’s. Sometimes it’s not doesn’t always make sense right so.
15:29
Lin Long: It will yeah but um it’s uh. yeah, especially when their hormones are raging. yeah that’s right.
15:44
Jamie Lord-Tovar: Age of the of the adults. That you work with. What are like the age ranges. that you work with, I know, like. And the adult day program they could be like. You know, like 20 years old, up to like 50 but Your clients are Not that old. But they’re like in there.30s.
16:19
Lin Long: When my youngest well I’ve got I’ve got I work with clients that weren’t even in the program.
16:28
Jamie Lord-Tovar: Okay.
16:30
Lin Long: My youngest was 16 years.
16:32
Jamie Lord-Tovar: Oh wow.
16:35
Lin Long: yeah. um but that went well. The older they get. Their hormones start to rage, you know and it’s just back and forth back and forth most it’s mostly the females.
16:58
Jamie Lord-Tovar: yeah.
17:00
Lin Long: You know and you’re standing in the middle of all this and you’re trying to you know okay you guys have to focus, you know. My older one is 40.
17:11
Jamie Lord-Tovar: Okay. wow.
17:14
Lin Long: So yeah but um. But it’s been it’s been it’s been good, since I yeah since I’m at Westmoreland now.
17:28
Jamie Lord-Tovar: it’s such a beautiful campus I love I love it there, Since the first day that I was. The support yes there’s a lot of support there that’s. A lot yeah, it’s a very special. Special school yeah. When that’s when I knew. I wanted to work where there was. first day that I. That I went yeah so yeah, it’s great.
17:57
Lin Long: they’re very welcoming and they look at if you know I mean I’m not I’m, not to say that I have not had my share of breakdowns while I’m working. You know.
18:09
Jamie Lord-Tovar: I mean, because it happens.
18:12
Lin Long: Because the there’s a lot. You know. physically and mentally draining.
18:19
Jamie Lord-Tovar: Right.
18:20
Lin Long: But you have to keep yourself, together, we want better way is you they’ve got counselors on campus you have access to these people. right because they make themselves accessible. that’s the number one thing that’s going to help other people that are working with people with special needs, counselors have to be accessible, you know or just somebody to talk to. Right, you know what how do I go about this, how do I change that you know how, how do I become a better. coach you know that really helps you’re not only that you’re being educated, at the same time.
19:00
Jamie Lord-Tovar: Right so. yeah that they’re really, it’s really a very close-knit group and a lot of great communication there so yeah, we are very fortunate to have that resource. And to have the counselors there and so willing to you know just help everybody out, I mean. You really get that whole sense of being a true team. You know, which is really. Nice.
19:34
Lin Long: that’s right well, I remember, I have both of both of mine um two of them had to break down the same morning the same time. They come through the back door in the break room oh my gosh what’s going on I’ve got both two crying. um, but I think one was playing off the other, you know.
19:57
Jamie Lord-Tovar: They do that sometimes yeah so.
20:01
Lin Long: I had one. come up to them and I had another one take me outside. So they can calm them down, and then they can talk, one can talk to me outside you know, because if they saw me it would be worse, you know I mean it was a group effort, I was like wow this is amazing Nice, you know. How can we help you if you, you know they were they just jumped in and then just.
20:32
Lin Long: I meant like that, so I was grateful for them to step in the way they did, and you know because I had no idea everybody got and then I showed up you know because I’m not going to you know we’re not, but they were they’re a little earlier than I was, I was Probably in a meeting or something like that, but. uh huh. But yeah they helped me out tremendously, and then, just as it started it was over.
21:00
Jamie Lord-Tovar: Oh Good.
21:01.
Lin Long: So, yeah that was fast well very effective. Westmoreland is very effective. Yes, yes, and they take taking. charge very seriously.
21:14
Jamie Lord-Tovar: Oh, I know I mean, I think I honestly think taking charge is. Such a Just a great concept once I took it the first time I was just like this is just a great idea and. You know it works with anyone I’ve done it when getting a haircut, you know, I was like okay I’m really going to focus on, you know what’s being said and. tell me what I just said, and you know, the whole thing and it took a long time and we worked it out and I had I was super happy and my stylist was happy and it was just like it was like it was so funny because it’s like you truly can use that the concept. anywhere it just translates everywhere so yeah so you know, and I love the whole idea that everyone is whole able and complete as they are, because we all have our things we all have our things right. So. Yeah. I think that that’s.
22:16
Lin Long: Good well that doesn’t make them any less human than us, you know we’re all the same.
22:21
Jamie Lord-Tovar: Right, then all right. Exactly it’s just because your communication is different from mine doesn’t make you any less of a person than me, you know I mean that’s. yeah. We all have feelings we all have needs we all have.
22:40
Lin Long: yeah exactly.
22:42
Jamie Lord-Tovar: fears, wants all that stuff. To be human and yes.
22:50
Lin Long: that’s right that’s like when I first started taking charge everything that they were saying was in a classroom setting.
23:00
Jamie Lord-Tovar: Right.
23:01
Lin Long: Which is a little more difficult for me because I’m outside. You know. What does this have to do with me, you know it was really hard to figure out, you know, I was trying to put myself in a classroom setting, but you know me being there, I was like a bull in a china shop, because I didn’t know what was going on, I didn’t understand what they were saying. Right, you know, but there was just so many people teaching too many things at one time. Too many ideas just going all over the place, and all I thought we were going to have one instructor but we had like five.
23:47
Jamie Lord-Tovar: yeah I. Didn’t know.
23:50
Lin Long: That made it more difficult. yeah. So, but I’m going to tell you, Nick I like how he presents everything. He speaks in layman’s terms um and he gives you a lot to think about like oh wait I didn’t think about that. I didn’t give it that way you know he gives out great points and I love listening to him talk when I can.
24:18
Jamie Lord-Tovar: yeah.
24:21
Lin Long: He really explains things to where you understand it, you know. Great and he just right there on point all the time, you know, so I really enjoy listening to him speak. yeah, no matter what it is, it could be boom, or what you know or a come here you know let’s have a talk, you know um but he’s really good at what he does.
24:48
Jamie Lord-Tovar: Yes, he is. I’m going to have to persuade him to be on my on the podcasts at some point.
24:57
Lin Long: Oh, I’m sure he’ll take you up on that offer they’re.
25:00
Jamie Lord-Tovar: Probably.
25:04
Lin Long: yeah.
25:06
Jamie Lord-Tovar: So, what do you think is the most rewarding part of being a job coach.
25:14
Lin Long: I would say, their progress from when I started out with them in the beginning, up until now. And not only that I hear from their parents. So, if I’m hearing positive things. From the words then I know I’m doing my job, the way it should be doing the way it should be done um. And it’s great to have great report rapport with each parent.
25:45
Jamie Lord-Tovar: Right.
25:52
Lin Long: if they need um if they like their behavior if their behavior needs to be worked on at work, I know what needs to be worked on at home. So, I let them know what’s going on at work. That way they can execute it out there and I can do it at my end and we can meet each other in the middle.
26:17
Jamie Lord-Tovar: Right
26:19
Lin Long: and if you don’t. Have that it’s just going to fall apart. And if they’re not willing to be involved in their behavior while there working. Then why are they there.
26:35
Jamie Lord-Tovar: That makes sense yeah, I mean it, I mean, please.
26:39
Lin Long: They want to push them out to work and to have other people babysit them. Right. You know, you want to make sure they’re there you know learning, you know skills, you know training rare cases something happens to the parent they’ll know how to somewhat take care of themselves. Right, you know they’ll have a better idea of what to do, you know how do you turn off the stove You know stuff like that. Right, do you stand and watch it or do you go and turn the knob you know. Right so it’s the same thing being at work, as it is at home, so you know you’ve got to meet you halfway. Or else you’re going to fall apart as a job coach because you’re not being heard. You know you’re basically being the situation is being ignored.
27:31
Jamie Lord-Tovar: Right.
27:33
Lin Long: So, but I, at least I have that I have good rapport with without you know. yeah, I make that my priority, first and foremost, you know, make sure I you know, make sure we’re all comfortable together and we can just talk about anything you know. So right, but the progress that they’ve made it just makes my heart happy.
28:04
Jamie Lord-Tovar: that’s good. Yes, they have I yeah I see progress in those guys all the time that’s really cool So what do you think makes you such an effective job coach and leader, do you. Do you think.
28:21
Lin Long: Well, you have to be coachable.
28:26
Jamie Lord-Tovar: Okay, so you have to be able to take the feedback, then, is that what you.
28:30
Lin Long: Okay, have to be coachable if you’re not then it’s just not going to work out, you know it’s like if you’re not a good listener it’s not going to work out. You know I’m. Like and like I said before, you have to be accessible to them all the time, you know you have to make sure they’re safe, you have to make sure you know, I meant you’re just I go back to your everything to them, you know. You have to be a strong leader. You have to carry yourself. As a strong leader, you have to be effective and what you’re doing there’s a lot of repetition that goes on, while they’re working you know, sometimes I try to change things up because that’s what they need to get used to.
29:19
Jamie Lord-Tovar: Right
29:21
Lin Long: Is Change. So, you know you have to expect the unexpected. Right so sometimes I’ll throw a wrench here and there, you know, but they seem to be pretty comfortable with it and there’s a little excitement that goes on.
29:38
Jamie Lord-Tovar: yeah. Because like a new challenge okay what’s she going to throw at us this time what. What new challenge
29:47
Lin Long: There almost doing a happy dance I kid you not.
29:50
Jamie Lord-Tovar: yeah well that’s great I mean. The thing I think most people fear is change and trying something new, so to like be excited to like try new things, you know as they happen, I think that’s amazing. Truly, I mean for anyone so.
30:10
Lin Long: that’s awesome. And it’s always good to be in a chaotic situation because it’s teaching them how to handle situations right certain situations so um I embrace all of that. I am I embrace it, you know it really doesn’t matter where I’m at I just don’t think about it, but I like I embrace the challenge of it and I give them a challenge to. Not an overwhelming challenge, one that they can learn from, and one that they’re comfortable with and sometimes they’ll say you know they’ll just pause but then oh Okay, you know it’s that simple for them.
30:49
Jamie Lord-Tovar: Okay, so they able to have yeah, they may just have to like stop and think about okay how am I how am I going to tackle this. And then. Then they just go for it.
31:01
Lin Long: they have to process it.
31:03
Jamie Lord-Tovar: Right yeah, a little yeah.
31:06
Lin Long: may take a while, but they’ll get it, and then they go Okay, you know, a light bulb will come on you know they’re more they’re much I mean they’re very smart individuals. Yes, people don’t give them credit.
31:24
Jamie Lord-Tovar: Right.
31:27
Lin Long: And, They can play people to you know but it’s like you know but um. yeah to be an effective job coach you just you know there’s a lot that goes into that you know it’s a lot of work it’s a lot of work but.
31:47
Jamie Lord-Tovar: you’re pulled in so many directions, I mean there’s just Everywhere just you’re the. you’re supporting the client you’re supporting whatever we’re. Wherever location you’re at You are you know you’re the middleman you. when something happens with whatever employer that you’re working for then you’re the one that they come to you know it’s like and then you and then you’re also you’re talking with the parents and you know yeah you have, like so many different things going on its.
32:24
Lin Long: Its mind boggling
32:26
Jamie Lord-Tovar: I applaud you for doing it for six years. Because it’s tough.
32:33
Lin Long: It is it’s not it’s not an easy job you know but. If I don’t know. I’m still here.
32:43
Jamie Lord-Tovar: yeah, I mean but it’s yeah, I know I get it it’s Just the reward that you get just the sense of satisfaction and just.
Knowing that your help you’re truly helping. Other people I mean. You know that is just such a feeling I mean you know. Even though I’ve changed careersor positions because I’m basically just now I you know I do a lot of the same things as an occupational therapy assistant when I work with people. You know, children with special needs, so I Like I’ve moved to a different location, but yet I totally get that that just the feeling of. Just satisfaction of like. I am I feel like I have a purpose and I’m you know. And I’m serving others, so I imagine you feel a lot, the same way, you have to for well.
33:39
Lin Long: It I know what my purpose is and a lot of people don’t know what their purposes.
33:44
Jamie Lord-Tovar: yeah.
33:46
Lin Long: I’ve been doing this, like all my life, working with people. Right so I’m pretty comfortable wherever I’m at you know.
33:58
Jamie Lord-Tovar: So.
33:59
Lin Long: that’s awesome but you really have to even assess yourself, you know how can I make this better, how can I make myself better, you know how can I make them better you know. there’s a lot to think about.
34:14
Jamie Lord-Tovar: yeah. Oh, totally So what do you think is like the most surprising thing that you think you’ve learned about yourself since you’ve been a job coach is there any one thing that you’re like oh wow I had no idea. That I was capable or it’s a tough one, I know.
34:41
Lin Long: repeat the question.
34:44
Jamie Lord-Tovar: What is the most surprising thing that you’ve learned about yourself as a job coach.
34:52
Lin Long: Um. To work with special needs.
34:59
Jamie Lord-Tovar: That you would be so good at it, or that you would enjoy it so much are those.
35:03
Lin Long: yeah. Just helping you know just helping people. Um yeah, I just. I really don’t think much about stuff like this, you know
35:22
Jamie Lord-Tovar: yeah.
35:23
Lin Long: I just get in there and do it.
35:24
Jamie Lord-Tovar: it’s just that’s just who you are that’s just who you are yeah.
35:29
Lin Long: You know, sometimes you know somebody has to pull my reins back that out. But um and I’ve learned I’ve learned a lot. I still learn a lot.
35:48
Jamie Lord-Tovar: I’m sorry. You still doing.
35:51
Lin Long: I’m learning a lot about myself.
35:54
Jamie Lord-Tovar: yeah.
35:56
Lin Long: You know that I work with um. it’s an amazing ride, you know and just seeing them blossom it just I know it’s gratifying.
36:14
Jamie Lord-Tovar: So that’s cool that’s cool you know I’ve realized, now that we’ve been talking, because since, since we know each other and everything we’ve been talking about your crew, but so your crew they work at the school and they do their the what do they do at the school.
36:33
Lin Long: The janitorial.
36:34
Jamie Lord-Tovar: Okay.
36:38
Lin Long: yeah, they do, they keep up Like housekeeping stuff like. That.
36:41
Jamie Lord-Tovar: They do all the vacuuming and mopping the floors and cleaning the bathrooms And stuff.
36:48
Lin Long: yeah, they are. they’re quite amazing they’re quite amazing. You know they get they get compliments every single day. From the staff, you know um. it’s just every day.
37:08
Jamie Lord-Tovar: Now they’re very professional I mean you know, in the way that they dress and the way that they greet You know people who greet them and yeah they’re very, very professional and you know it’s like you can see when they’re out when they’re. it’s very obvious when they’re on their break there in the break room or they’re outside and they’re taking a break and otherwise you see them in the school working you know so.
37:39
Lin Long: yeah.
37:39
Jamie Lord-Tovar: Nice.
37:40
Lin Long: No playing around for me.
37:42
Jamie Lord-Tovar: yeah.
37:43
Lin Long: I don’t want you to look like you rolled out of bed come into work, you know fix your hair, because this is a life skill make sure you eat make sure you shower make sure you don’t have toothpaste running down the front of your shirt or your shorts make sure you’re brushing your teeth make sure you’re washing your face get old asleep out. Make sure you’ve got a haircut make sure you’re shaving unless if you want to you know grow beard or a mustache. Right um they’ve got to be clean. Right your clothes have got to be clean.
38:18
Jamie Lord-Tovar: mm hmm.
38:19
Lin Long: And if not, then I’m on the phone with the parents, you know, can you make sure before they leave the House that they are presentable when they go to work. Right, because that is their life skill, that is a goal for them.
38:33
Jamie Lord-Tovar: Right. So, because the idea I mean ultimately is that that they can then go work somewhere else, maybe independently, because you now are coaching a crew, but then we also have all our independent workers, like a couple that I interviewed last year. Right, so the idea is that some of them will graduate basically graduate from working with a crew to working somewhere else independently and then having a job coach yeah possibly. Not likely full time like they have now but somebody who comes in a couple hours each week or something like that.
39:24
Lin Long: Well, like the one that you that you interviewed the one that I was working with the musician. mm hmm um that that was a great pair because I’m a musician too.
39:36
Jamie Lord-Tovar: Right yes.
39:37
Lin Long: um yes, what I do is I’m even though we’re not in the same room I watch him teach through zoom.
39:47
Jamie Lord-Tovar: Okay.
39:47
Lin Long: And I’ll critique him at the end because he may I might catch something that he might have missed mm hmm um. But it’s interesting.
40:00
Jamie Lord-Tovar: That would be cool, I think.
40:03
Lin Long: It is, it is very cool, but then the kids get sidetracked and they want to ask me questions. But then I have some you have you know cause my MIC is cut. But I like texts or type or type them, you know.
40:22
Jamie Lord-Tovar: uh huh.
40:22
Lin Long: let’s have them focus on you and not so much me so you know he gets them back to their lesson, or you know or practice or whatever I did when I was in Selma California, in the San Joaquin Valley, my friend had an autistic son. Okay has an autistic son. Well, he found it wasn’t a bad and he wanted to learn how to play drums Okay, so I would go over there and I would talk to his mom and said okay well. You know, and I would charge for lessons, because it was a side job you know, and she didn’t mind um we went to high school together, which was even better. Nice um but I told her you know what type of drum set for to buy for him, you know, a starter kit or whatever you can bring them to my house because I’m out in the country and I’ve got a big garage you know. it’s also a game room, so they would have fun coming over playing whatever or whatever, but I would have him set up, you know set up his drum set and break it down and set it up again.
41:36
Jamie Lord-Tovar: Okay.
41:37
Lin Long: They have to learn how to do that.
41:38
Jamie Lord-Tovar: Right yeah.
41:40
Lin Long: we’ll also have to learn how to tune. So, all this, all this had to be done before he started to play. But in this case, since he’s autistic I just had him beat the heck out of his drum set. And then we broke it down Just to get it out of the way. Right and then we got him focused. And I would have him facing me, and I would be facing him and he would just mirror me. Okay yeah and then he got really good you know.
42:17
Jamie Lord-Tovar: uh huh.
42:18
Lin Long: yeah and I really don’t know what happened to him, but except for he did graduate from high school. To college, but that’s about it. I don’t know if he started a band or not, but all the kids that I’ve taught. I would keep them off the streets.
42:37
Jamie Lord-Tovar: yeah.
42:38
Lin Long: He wound up starting a band and then playing at their school.
42:42
Jamie Lord-Tovar: Oh wow.
42:43
Lin Long: yeah so um but I always had him record himself that way he can go back and look at what He needed for a great. So, but that was my first time ever been engaged in teaching someone that was autistic. Okay, he was just all over the place, like nonstop he would just be all over just here and there, and. But once he stepped down behind those drums it was practice time and he knew that so and I’m very strict. yeah before you know. If you want to be good at what you’re doing you I’ve got to be strict.
43:24
Jamie Lord-Tovar: that’s it yeah, it’s true it’s true and tough love yeah.
43:28
Lin Long: And there’s also boundaries, you have to set boundaries yeah. But um yeah that was yeah so.
43:36
Jamie Lord-Tovar: So, Lin where you’re this is really fascinating you’re going to have to come back and be a guest again and to talk about. Music, because I, we talked about I had Sarah on a couple episodes ago and we were talking about how music helps with children of all of all abilities and then I’m going to have Jacob at some point in time.
44:05
Lin Long: that was his name Jacob.
44:07
Jamie Lord-Tovar: Already, really.
44:10
Lin Long: wow.
44:12
Jamie Lord-Tovar: So, I’m going to have Jacob one of a behavioral analyst who’s going to be a guest on this show too and it’s going to talk about how he uses music when working with some of his clients, so that would be awesome will you come back and talk more about music sometime.
44:31
Lin Long: Absolutely. that’s also what I do when all the kids. Are on vacation.
44:38
Jamie Lord-Tovar: uh huh.
44:39
Lin Long: I bring my laptop in and I play music. While they’re working you’ve got to make it fun sometimes. You know.
44:48
Jamie Lord-Tovar: You do yes.
44:50
Lin Long: You know, or else they’re not going to want to come.
44:52
Jamie Lord-Tovar: Right. And what a great way just to play music and you’re still working you’re still what you can have yeah you can enjoy it and you know you.
45:01
Lin Long: know you don’t have all that silly time together. But stay effective in your work.
45:07
Jamie Lord-Tovar: Right exactly still be professional and safe and all of that stuff that’s so important.
45:14
Lin Long: right.
45:16
Jamie Lord-Tovar: cool. alright. Well um.
45:21
Lin Long: I think we covered everything.
45:23
Jamie Lord-Tovar: I think we did is there anything else that you think that we should cover before we end our awesome conversation.
45:34
Lin Long: um. I’m looking for live music now.
45:40
Jamie Lord-Tovar: All right, we were going to have to do that soon I would love that I mean I really feel that music is such an important Part of anybody’s life and that definitely one of those things that unites us all, I believe you know, because we all have some type of musical ability. As My guest was talking about, which is like that’s true, we all have some sort of musical ability, whether it’s you know shaking the maracas or the tambourine or you know, being able to play symphony so when it’s. done right on dude the I always say that all of my family members, play an instrument and I play the radio so like but that’s an instrument apparently the radio.
46:25
Lin Long: Well, you got to turn the knobs you know.
46:27
Jamie Lord-Tovar: it’s true.
46:35
Lin Long: Thank you so much Jamie for having me on.
46:38
Jamie Lord-Tovar: I really appreciate it, and I want to thank everybody out there for listening to the podcast please follow our journey as we bring awareness and acceptance to all of our community about people of all abilities. And visit our website at www. I am able podcast.com or listen to us on your favorite streaming platform.
Meet the Host
Jamie Lord-Tovar our host has the tables turned on her. Learn more about the amazing host and where the podcast is headed in the future.
Veata: 0:20
Thank you for joining us for another episode of I am Abel. The goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities. Thank you for joining us for another episode of I am able today we have a special guest host. My name is Veata Betton. We also have Linda Whitney as our special guest host. And the reason why we are special guests on this episode is because we will be interviewing our amazing host, Jamie Lord Tovar.
Jamie: 1:02
Hello, everyone.
Jamie: 1:04
So you guys, finally the tables have turned you’re able to ask me the questions.
Veata: 1:13
And thank you, Jamie, for joining us today.
Jamie: 1:17
My pleasure.
Veata: 1:20
So I’d also like to start off Jamie, if you can tell us a little bit about yourself and who you work for what your role is
Jamie: 1:29
Sure. So I I am a occupational therapy assistant, also known as a coda certified occupational therapy assistant. And I worked for Total Education Solutions. I’ve been working for total education solutions for almost three years. And before that, I worked for the Institute for the Redesign of Learning as a job coach.
Jamie: 1:59
So between the two companies I’ve been here about seven years.
Jamie: 2:05
I attended school for occupational therapy assisting at Santa Ana College in Anaheim.
Jamie: 2:14
And before I became a CODA, I have had a lot of different jobs. In my past, I am one of those people who likes to know a little bit about a lot of things. I worked for Walt Disney World in Florida for about 13 years. I also have worked as a admin assistant for a couple different temp agencies. I was an artist I worked at art foundry for a couple of years and then I also create some of my own art so that’s kind of just a brief a brief explanation of some of my my prior experience, so I feel like I’ve know a little bit about a lot of things which makes me a very well rounded therapist perfect for our podcasts
Veata: 3:17
exactly Wow. I didn’t know that you also were an artist. And so I am
Jamie: 3:20
Yes, I do mainly sculptures. I do a lot of paper mâché. Día de los Muertos is my day, the day of the dead is my favorite holiday. And so a lot of my pieces are some type of skeleton. And then I also do some painting, but it’s most of that’s more just for my own personal pleasure.
Veata: 3:50
Oh, wow, that sounds great. Nice. So do you mind telling us, Jamie, a little bit of how did you become the host for I am able?
Jamie: 4:03
Well, I decided to join our DEI group back in the summer. And we were talking about different things that we could do to help make people feel more a part of the community. And so we decided the group that we would start a podcast, and everyone was a little seemed like maybe a little reluctant to be the host. My previous experience at Disney and when I I worked in the parking lot and I was on a tram. People would always tell me what a nice voice I have. I had other people who have in the past have told me that I have a nice calming voice. So I was like, Okay, well, no one really is jumping up and down to be the host. So I think I will do it. It sounds like it’s something I’ve never done before. something totally new and I thought why not? It’s you know, I love to talk to people. I’m, I’m a lot like my mother and that way is that you know, anybody who’s willing to talk to me, I’m more than willing to to talk with them too. I find that you know, you find out many interesting things about people just by starting like a casual conversation.
Veata: 5:25
Very true. With that, and we love your voice, we definitely feel your voice is perfect for the podcast
Jamie: 5:30
Thank you.
Veata: 5:35
Thank you so much. So that goes into our next question. What is it like interviewing our guests?
Jamie: 5:40
Um, it’s a lot of fun. Sometimes, I get a little worried that I’m so I’m listening to what’s being said that I’m going to forget, like, some interesting questions to ask later on. Maybe some follow up questions. So really, the, the hardest part is just being able to like to have a question and then find a good point in which to, to ask that question.
Linda: 6:13
Do you do your research prior to like, we did an episode on Tourette’s? Do you kind of research a little bit before you get on there? I know, we have like a certain number of questions that we have to ask, or is this just based on your knowledge of your previous works?
Jamie: 6:33
It really depends on the subject matter. I didn’t know a lot about Tourette’s ahead of time, you know, kind of just things that I’ve heard about it, just, you know, kind of in passing. So I did do a little bit of research.
Jamie: 6:53
For like, the Occupational Therapy interviews that we’ve had, I haven’t because I’m an occupational therapy assistant, I really didn’t do any, any research with that. And then, you know, and then I’ve had you guys have been able to help me with some of the questions. So, it’s been kind of a combination.
Jamie: 7:15
I’d like to have some questions that way I already have kind of planned out, just so that I have an idea of where the interview is going to go. When I interviewed Sarah, we only had a handful of questions. So it was more kind of on the fly, which I felt a little nervous about, but apparently it worked out just fine. So I guess to adapt, yes.
Veata: 7:44
Do you have a favorite guest?
Jamie: 7:48
Oh, my goodness, I you know, I have really I love them all. I don’t, I don’t know that I could really, um, have a favorite. Maybe I would have to say if I had to absolutely choose one, it would be my interview with Josh who’s our nonverbal teenager because that was just, I wasn’t really sure what how that was going to go. Even though I know him pretty well. And I work with him on a weekly basis. We weren’t really sure. You know how long he would want to communicate. And it was kind of funny, because the day that we talked with him was not one of his days that he’s really super, wanted to be communicative. But he did. And, and it turned out to be kind of a neat interview. And I know that a lot of other people enjoyed that one too. My favorite? Yeah, the thing I love about our podcasts is that I am learning so much about so many different people about their abilities, everything just by listening to these podcasts because I didn’t know anything about nonverbal autistic people or about Tourette’s. So, it’s fascinating to listen to learn to be educated, and we couldn’t do without you. Oh, thank you. Well, it’s been fun and yeah, I mean, just getting to know a little bit like I guess I am one of the perfect people to do this podcast because I like to know a little bit about a lot of things so this It’s been fun and I can’t wait till this coming year to talk to you know more people and try to come up with a guest who have some other very unique experiences in their lives.
Veata: 9:34
Lovely. So over the year, what podcast actually surprised or shocked you?
Jamie: 9:46
Oh Um, well, I think really like the just The first one, we kind of we released them in not exactly in the order that they were recorded. But the first one that I did was with Natalie. And she was one of our adult clients who is employed, and she has a job coach. And so I guess that one was probably because it was the very first one. It was kind of shocking that she opened up so much to, to me, you know, I really liked that, that, you know, it was, I wasn’t sure how it was going to go, because neither one of us had ever done anything like that before. But it was just how I was so proud of her for being able to, you know, kind of let us know about her life. And really, we get a sense of what it’s like to be, you know, an adult with special needs. So I think that that was probably Yeah, it was it was kind of shocking how successful it was, I guess.
Veata: 11:13
Love it she did open up a lot.
Jamie: 11:19
She was great. It was so it was it was perfect to, you know, introduce us to right world. Right. And then I think also and then there was there was Mary, who was special needs, who’s also helping others. And I just thought that that was just so great. Because it was like, you know, that was so important to her and her life, she just seemed so fulfilled in her life with helping others and just what a huge thing to be able to do for other people is, you know, to be able to help them and be able to relate. So that was another one.
Veata: 12:02
What was the most informative? Since you are so well rounded? Jamie? What was the most informative podcast for you? I know, for me, I’ve learned from everyone that I listen to. But I’m not as well rounded as you are so.
Jamie: 12:25
Oh, wow. I mean, I’ve, I’ve learned something I’ve learned quite a bit, I think in every single podcast, even the ones that you know, like that had to do with occupational therapy, because, you know, everybody’s experience is so different. Oh, wow, that’s a, that’s a tough one. I think Marissa is dad, and just the, the autistic teenager who just been able to experience like, from the time that she was diagnosed, and just kind of going through his emotions, and some of the experiences that they had, and just his feelings as, as a parent, you know, being able to see that side of, of autism or I think was was really informative for me.
Veata: 13:19
Very true. I mean, I think that one touched me as well too. Because the father, he just wanted his daughter to progress and, um, you know, live a beautiful, amazing life and he had no problems, helping her and guiding her, whichever, whatever she needed. And that was a beautiful interview. So definitely agree.
Jamie: 13:40
Yeah, I love to tell people about, especially if they’re parents that are struggling with their children and thinking they may have autism, that that particular interview, and then also the one Marissa herself. And then Enrique the musician, who was also teaching others music, I thought, you know, these guys have, they seem very happy, very fulfilled in there, you know, in their lives. They have a lot of drive, they have ambitions, their hopes, their dreams, just like everybody else. And you know, it’s just like, we’re all we’re all the same deep down, you know, we all have the same basic needs and wants, I believe.
Veata: 14:37
You know, I think I think it’s very interesting because, as you were speaking, you know, Enrique and Mary are also helping, but I know that there’s been a few of our other guests like Avery a lot of our guests are actually helping and giving back to their own communities. And so I think that that’s very very valuable.
Veata: 15:01
Where do you see the podcast going?
Jamie: 15:06
Well, we’ve talked about going from just being audio to be audio and video so that we can see our guest Live, which I think would be a nice, a nice touch, I hope to have at least two guests a month continuing and talk to people of different backgrounds with, you know, people who we think of as being typical people that we think of as having some form of sort of diagnosis. Again, just, you know, being able to tell our stories, and, you know, kind of just be able to continue to walk a mile in somebody else’s shoes, just see what it’s like to, to be somebody else.
Linda: 16:02
definitely agree.
Linda: 16:04
And what do you feel is kind of the value of us being able to walk into somebody else’s shoes, especially for someone who’s not privy to having those individuals around them.
Jamie: 16:10
I think by just hearing other people’s stories, that that we’re able to better relate to one another. And then you know, if you’re out somewhere, and you’ve seen somebody having some sort of issue, having a breakdown, if it’s if they’re an autistic child that, that you have a little bit better understanding of, okay, this is this is what’s going on that, you know, just to have more awareness of others, and just being able to be more accepting when we see things that aren’t what we consider normal, or, you know, typical to just be, you know, that’s one of the things I love about living in California is it feels like, as opposed to other states that I’ve lived in, that were the people who are different are more welcomed, that it’s okay to be different. I mean, like, I, I, myself, not never wanted to be like everybody else. So I’ve made it a point my whole life to be a little bit different. But not everybody feels that way. And people want to feel like you know, I love to feel that I have a connection with other people. But I also have my own my own personality and my own thing. But I also know that you know, we’re all interconnected in this world, that we all need each other. We can’t just be one lone person. And if we have a better understanding of some people, then we’re more likely to want to understand other people.
Veata: 17:56
Why did you become an occupational therapy?
Jamie: 18:02
Well, as I, I’ve mentioned to you before, I have a wide variety of, of skills. And about 10 years ago, I was looking for something new to do I, I’ve been in an admin assistant, and I had been an artist, and I loved being an artist and working in an art foundry. I was a wax chaser, which is the foundry hired us artists, other local artists hired us to make bronze reproductions of their work. And yeah, yeah. And so I did the, the wax work. So you take a artist piece of one of their pieces, and we did like large scales, things like 10 feet or more. And yes, so you, yes. So huge pieces. And you would we would make plaster molds, and then from the mold, then you make a wax positive, and then then you make another mold of that. So it’s a very labor intensive process. And the founder that I had worked at, I got laid off, and I was really bummed. I was not sure I was ever find another job that I loved as much as as working in the foundry. But my landlord at the time, was an occupational therapist, and she said, and I actually had never heard of occupational therapy before this time. So she was like, you would be great at occupational therapy because people love you. You are creative. And you know, people just you just give off a vibe that people trust you and she goes, I think you would really enjoy this. And so, I looked into it and when I saw like the medical side But I was like, I don’t know if I really want to help people after they’ve, like had an accident or a stroke or something. And then I looked a little bit further into it and saw the different aspects of working with children. And when I found out about being school based, which I am, I work in schools and I work in our pediatric clinic. So I split my time working with children in like, charter schools. And then I also work right now at our non public school Westmoreland and those children have primarily are autistic. And I help them with like handwriting, and being able to regulate their emotions while they’re at school, and just being able to follow like two and three step tasks. So and, and in part of that, you do a lot of cutting and pasting, which one of the thing I love to do most is is cutting and pasting I, I love crafts. So once I found out that I could do crafts all day, I was like, I am sold, I am on this.
Jamie: 21:18
So I went to school, and then I found out you know, it’s not all just cutting and pasting. But there’s a lot of that, which is awesome. And then now I also work in our pediatric clinic, one of our pediatric clinics in Lynwood. And I work primarily with children under three. And so that’s more of you know, being able to help children learn how to hold a spoon to feed themselves, or to their is, because they’re young, there’s not so much cutting and pasting, there’s more drawing, but it was just the, the whole idea of occupational therapy just really fit in with a lot of my interest as as a as an artist, and then that the need to help people. That was the one thing when I left Disney was that I felt like I was missing is like helping people. Just like that was one of my favorite things to do when I was there was to make somebody’s day. So now. So now I you know, I get to make somebody’s life basically, you know, so all these little times that I interact with them just build up to helping them promote their lives and help them have a better life. So, so that’s, that’s how I got into occupational therapy and why I love it so much. And I wished I had found it sooner. But you know, better late than never. And I’m so glad. That’s very
Veata: 22:44
Wow.
Linda: 22:45
Stages. Right, right. You ever keep in contact with some of the kids that you have hoped?
Jamie: 22:55
I have kept in contact with some of the adults that I have. I have helped Josh like, you know, I mean, obviously as a job coach. Yeah. So I, you know, I do keep in contact with some of some of my old clients. Not really the children so much, but I’m hoping that, you know, that I’ll hear from some of them. And, you know, if I, depending on what schools I’m working at, if I’m back at the same school, then you know, I’ll be able to see them as they’re getting older and thriving.
Veata: 23:39
That’s amazing. Wow. Are there any other questions for Jamie, Linda?
Linda: 23:47
No, I think you’ve covered them all. I mean, it was been a very great interview. Thank you. And Jamie, is there anything else that you would like our audience to know?
Jamie: 24:00
Hmm. I think just, you know, to continue to, to listen to the podcast, and we’re always open to suggestions for different people to interview if there’s, if I’m hoping this year that we’ll be able to interview some people maybe with some mental health issues is as well as other just other issues that may come up, but I’m really hoping that that some of my our guests will return possibly to I know there’s a few that I would really like to talk to again, so but I would also like to, to learn some new experiences and I was going to suggest doing follow up interviews on a couple of the people you know,
Linda: 25:00
just to see how they’re progressing, what is changed?
Jamie: 25:05
Yeah, I think that would be great. Yeah, I think you know, I’m pretty adaptable. And, you know, like I said, I love to hear people’s stories. And so I’m just hope to continue to be able to share more experiences with people in general. And hopefully we’ll all learn even more this year.
Veata: 25:29
Sounds great. Well, thank you, Jamie, Lord-Tovar for letting us interview you and turning the tables around. And thank you everybody for joining us for another episode of I am able. Remember to subscribe to I am able on any of your podcast platforms. Thank you. Thanks, everybody.
Music Therapy Fundamentals
Sarah discusses the fundamentals of music therapy!
Host: (00:20)
TES and IRL is providing this podcast and as a public service, but it is neither a legal interpretation nor a statement of TES and IRL policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by TES and IRL. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by TES and IRL employees are those of the employees and do not necessarily reflect the view of TES and IRL or any of its officials. If you have any questions about this disclaimer, please contact TES at https://www.tesidea.com/contact-us/or IRL at https://www.redesignlearning.org/contact/. Thank you for joining us for another episode of I am able the goal of our podcasts to bring acceptance and awareness to our communities when working with educating and living with people of all abilities.
Jamie: (01:25)
Hello everyone. Welcome back to, I am able I’m Jamie Lord Tobar and today my guest is Sarah
Sarah: (01:34)
Tokazowski: Thank you.
Jamie: (01:36
<laugh> um, horrible at, at name. So thank you for that. Um, so today we’re gonna talk, talk about music and we’re gonna talk about how music affects people of all abilities. So, Sarah, can you gimme a little bit of a background about yourself? Uh, what, what are you currently doing?
Sarah:(01:55)
So I am currently a music teacher and education coordinator for Encore music and performing arts. Uh, I’ve been doing this for about, uh, like this current role for about five ish months or so. Oh, wow. Um, so my background in education, uh, I taught music in North Carolina for three years. That’s where I’m originally from. Uh, I went to college at ECU and I’m going there again for my grad degree go pirates <laugh> uh, so I taught for three year there and then I came over to California and I have, I worked at total education solutions for three years prior for the last three years, actually <laugh> as an administrative specialist, just learning about the, the back end of education and how that works with tailoring, the special needs. And now I am here in my seventh year in the educational field.
Jamie: (02:46)
Oh, wow. So you like to know a little bit about all aspects of things. Like I, I see that’s
Sarah: (02:53)
Crazy. Yeah. I, I, I like learning about like the thing itself and then learning like, oh, how does that work on this level? And then this level and like just diving, diving deeper. So, yeah.
Jamie: (03:05)
Nice, nice. It’s always good to know all the different aspects. So you said that you’re, um, teaching music right now. So, uh, exactly. What does a music teacher do typically?
Sarah: (03:20)
So a music teacher in like a grade school setting, uh, sorry, my brain just died. <laugh> that’s okay. So every music teacher has a different way of engaging their students in music, in some sort of fashion, web they’re. They are tailoring the education to a performance like a band director in a middle school or an orchestra director, or if they are just trying to teach those base level musical concepts, like this is what rhythm is, this is tempo. Here’s what this style of music is like, tho those very basic level of musical concepts that that’s basically a music teacher does is with those with, with that grade level of student, uh, once it comes to, you know, like you could even have a music teacher working with even younger students, like with early ed students, uh, like, you know, when their birth to three, four age level, I have a three year piano student that I’m working with. Who’s learning how to plunk out. Mary had a little lamb with one finger. So it depends on the student’s ability as well as, you know, how much they practice or what they themselves can tolerate. Cuz everybody like, even as an adult, everybody has a different attention span. <laugh> right. Yeah. And then even for adults, um, one of my coworkers is working with an adult who knows how to play violin at a professional level, but he’s learning how to U to play, um, the guitar.
Jamie: (04:51)
Oh, wow. Okay. So it’s, it’s that much different. Um, I I’m what I, the only instrument I play is the radio. Um, and so I really, I I’ve always been interested in music. My, the rest of my, my siblings all play an instrument and singing. Uh, I do none of that. So I’ve, I mean, I’ve been around it, but I still don’t really quite understand all of
Sarah: (05:13)
It. Yeah. So it’s, it’s a whole bunch of different layers. So you have like, you know, the part of the music that you would sing music is made of a whole bunch of different parts, like the singing. And then there’s the background beat, which, uh, like if you’re working with, uh, an elementary or sorry, early ed level of student to get them that basic level understanding of what a beat is, you could just turn on a song, like any pop song on the radio and say, okay, can we just clap what the steady beat is? Cuz every song has that steady beat, like that heart, we call it the heartbeat of the music, which helps it go. And it’s always steady doesn’t change. Um, yeah. Oh, I forgot where that tangent was. <laugh>
Jamie: (05:58)
So, so the, the steady beat. So how do you get them to like understand what you mean by it? Like a, a beat. I mean, if they’re I,
Sarah: (06:10)
So it’s kinda like, uh, so with, you know, like a second grader, I could say, okay, so you, everybody has a pulse. That’s one of the reasons why we’re living and we’re breathing. That’s what helps keep us moving. Music also has a pulse with younger kids, like kindergarten and younger, I would say, okay, we, we have something that propels us forward. Music also has something that propels it forward and that’s called the steady beat. That’s where you feel like, you know, your body wants to move with the music. So I might even just start instead of describing it, just turn on some music and say, okay, can you move to the music? And because humans are musical creatures, the very first thing we’re gonna do is move to the pulse of the music, rocking back and forth. Like you’ll turn on music for a baby and babies will do that too. Um, so it’s just about showing them what it is and then they’re like, oh yeah, it’s just this, like, you already know what it is. It’s easier to have them do it than explain it sometimes. Okay.
Jamie: (07:09)
All right. Cool. I’m just, I’m thinking also like for our, some of our older students, uh, who have special needs that are nonverbal and for them to be able to, like, you kind of understand that they’ve, they’ve got the concept. If they’re moving to the beat, you know, as, as you know, you’ve asked them to
Be listening to yeah. As, as when I’m teaching a class, if I say, okay, I want you to move to the beat that moving could be their clapping, their hands together. They’re tapping something on the desk. They’re rocking back and forth, whatever movement they’re doing. Usually it’s, it’s, it’s sometimes within the pattern of the music. Okay. Okay. Yeah. Or that steady beat. <laugh> nice.
Jamie: (07:48):
All right. So if you have, uh, like, um, um, say you’re teaching a class, who’s like elementary school school and, and they’re primarily typical students. What would be some of the things that you would, um, do with them? What would be some of, some of the activities you might engage them in music with?
Sarah: (08:14)
Great question. So I usually structure, you know, the 45 minute class, last period around, they walk into some sort of music that is slow and quiet. So that way they’re not running into some really fast music. Uh, we do stretches and vocal warmups because your voice is a muscle and you have to warm it up just like any other muscle. Like if you’re about to run, you stretch your calves, things like that. Okay. Um, and then we’ll sing a melodic song after we’re all warmed up and then usually I’ll teach them some sort of concept and some sort of rhythm. So for example, uh, with my third graders, um, last month we were learning about, uh, up dynamics. So dynamics are how loud or how quiet the music is, which you learn. Those words are forte for loud and piano for quiet, but there’s dynamics in between like Metso forte and Metso piano and then louder, which is Fort SEMA, which is super loud. And then P and E SEMA, which is super quiet. So they learn about that through this piece of music called in the hall of the mountain king, which if I play it for you, you’re probably like, oh yeah, that’s, I’ve, I’ve heard that before, but now I have to click my Spotify button and search this up. <laugh>
Jamie: (09:25)
I was gonna say yes, can you please play it for us?
Sarah: 09:27):
<laugh> please hold for technical. Okay. So, so, so this is, uh, this, this is what the sounds like.
Jamie: (09:38)
It starts super quiet. Are you getting,
Sarah: (10:05)
So it starts off PMO, which is super quiet and then it’ll end.
Sarah: (10:21):
So the, so the students learn, you know, through pieces of music. Okay. This is here. Here’s what dynamics are. Here’s an example of what that is. And then we would talk about a rhythm after that. Like maybe learning, Hey, here’s what an eighth note is, uh, you know, a quarter note would be TA TA, and we would show them picture, do that and like, okay. Here’s what a quarter note is. Now let’s talk about an eighth note where instead of TA TA it’s Tady, Tady, it’s a little bit faster. Um, and then we would take those dynamic and those rhythm concepts put them together into either some song that they’ve already learned before. Like, oh, okay. Let’s take this song that we talked about last week and now we’ll sing it loud instead of soft, or let’s sing it once this way and once this way, or let’s take all of the cord notes and make the ma notes. So do doing things like that to have them have another chance of understanding the concept that was learned today. Okay. Yeah. But I almost always try to have them have opportunity to put their hands on some sort of instrument, whether it’s a drum, a xylophone Morocco’s tambourine putting their hands on something. So that way they’re getting tactile engagement too.
Jamie: (11:32)
Okay. So then you can kind of like you’re hearing, you’re feeling all of the rhythm all at the same time to kind of bring it all together. Is that the idea?
Sarah: (11:41)
Yeah. I, at the end, I like to, I like to throughout the entire lesson touch on those different learning styles of, okay, we’re gonna listen to something we’re also going to clap something we’re going to pat something out. We might draw something. So there’s those different levels of engagement. There’s always questions in the middle, just so that way the students can feel engaged. Like, uh, you know, we talked about this note last week, what is this note called? And kid will raise their hand say, oh, it’s like order note. Um, so I just like to, by the end, wrap it all together with okay. Putting all of those styles together and go <laugh>
Jamie: (12:15)
Okay. All right. So, so I, I work in occupational therapy and so we’re always, you know, we’re thinking about, you know, the upper body a lot, but, but, um, the entire body and being able to, um, maintain attention and things like that. So do you also have them like get up and, and, uh, stand and like, like tap their feet as they’re they’re doing all everything else. Okay.
Sarah: (12:40)
Definitely. Yeah. So sometimes it depends on the activities. So there will be some activities, you know, pre COVID I would do dances. They would learn how to do square dancing, or you go in and out the wind where you have like one person with their arms up and the other person with their arms up and then put the arms down. Yeah. So we would do dancing games like that, but now like post COVID, we have to, or not post COVID it’s still here. <laugh> um, you know, just kidding. <laugh>. So during the pandemic, we’ve had to adjust those activities to where instead of having them be collaborative or like team type games there, you know, you’re standing in place and you’re doing the dance in your spot. So I, I, I do like to incorporate dancing and movement of not just your arms while you’re playing an instrument, but dancing right now,
Jamie: (13:29)
We have to be adaptive. Okay. I guess.
Sarah: (13:31)
Yeah. There’s always some sort of adaptation that has to be done. Yeah.
Jamie: (13:39)
Um, let’s see. So, um, what about like older students? How do you keep them engaged? Um, in like a music lesson.
Sarah: (13:51)
So pacing for adult students is going to be little bit different, uh, working one on one with it, with an adult student, usually they will come and say, they’ll say, oh, I would like to learn something like this. And you just kind run with that. Like, they’ll feed you one thing that they wanna learn and then it’ll keep going from there. Well, like it, I have an adult student that says, you know, I really like, and I wanna learn drum songs and play like, you know, the, the drummer from queen. Okay. So you can definitely work around that and say, oh, let’s try this one. Um, in terms of just general music education, um, what, what I like to do with the older students is instead of just, you know, doing a lecture where, okay, we touched drums here and then we do this here, and then we do this here, like getting some sort of instrument in their hands.
Sarah: (14:43)
So they’re getting that, um, tactile involvement all the time. So doing like band or orchestra, learning some sort of string, uh, there’s actually research studies that as you get older, one of the ways to prevent, um, like early onset Alzheimer’s is to keep your mind engaged. And one of those ways to do that is to pick up a new instrument and learn how to play that new instrument. Cuz you’re learning how to read music. You’re using both sides of the brain by reading and playing it at the same time. So there’s, there’s, there’s a lot of good stuff that happens with playing an actual instrument when you’re older.
Jamie: (15:17)
Oh, wow. Okay. So I guess I need to get started on that. <laugh> I’m gonna be soon. <laugh> Good to no, yeah. I there’s. No, there’s no excuse that. You’re never, you’re never too old to learn. That’s that’s absolutely true. And I would, and I would imagine, especially since we are so just engulfed in music everywhere that yeah. I mean there’s no way around.
Sarah: (15:46)
Yeah. There’s there’s music everywhere. Every single movie you watch, every single commercial could, the commercial has intentionally written music to get your attention. So there’s psychology around, you know, you want to make sure that it’s something that’s gonna be catchy and quick, that’ll get your attention. Like, uh there’s um, you know, the best part of waking up Well’s in your cup, that’s like commercial from like the nineties and I can still just like right. Yeah. It’s there. Yeah. <laugh> yeah. That’s catchy. It’s familiar. Um,
Jamie: (16:18)
Yeah. <laugh> right. Yeah. I think, I think I can still almost recite all 50 states in alphabetical order from the song I learned in like second grade. Oh yeah. <laugh> I won’t do that for you because then I’ll mess up. So <laugh>
Sarah: (16:31)
I know the exact song you’re talking about. That’s the exact song that I learned. <laugh>
Jamie: (16:36)
Maybe it was third grade. I don’t remember. But it was, yeah, it was a few years. It was a few just a few years ago. Not that many. Yeah. You know like
Sarah: (16:43)
Two years ago maybe,
Jamie: (16:45)
Right? Yeah. Yeah, absolutely. Yeah. So, so for those of us who are not very musically inclined, but like I have, um, different students and clients that I work with who are musically inclined and sometimes they want my help in, in finding ways to, to, um, be able to play different instruments. Um, like, uh, um, I have, uh, a student who likes the piano, but I don’t know the keys. And he, um, plays with, with two fingers mm-hmm <affirmative> so I don’t know if it would be easier for us to do something like mark the, each of the keys, um, and then just have like letters for him to look at, or what’s like the best, what would be the best way to start? I mean, just trying to figure something like that out. So
Sarah: (17:48)
A good way to start, they have stickers that you can purchase or you can get one of your musically inclined friends to help you. Uh, the way that we do it for our younger students is we get like the different colored stickers. So, um, the musical alphabet is a, B, C, D E F G. And it recycles over again. But when you start learning piano, start learning C cuz it’s middle C’s in the middle of the piano. Uh, so you would get, uh, a red sticker for C and then orange for D yellow for E and then go the different rainbow colors all the way back up to C and there’s uh, music books, uh, for piano that you can get that are also color coordinated to those colors. Um, um, so that’s something that can help and there’s plenty there’s
Sarah: (18:33)
Instruction, instruction books are probably the best way to get started, cuz they have pictures to help you of like, okay, so to find middle C you’ll have two black keys and three black keys. That’s how a piano goes. There’s all white keys. And then above the white keys are two black and three black keys and patterns all the way up. Um, so to find C you find the two black keys and then there’s gonna be a white key to the left of the left, most black key and that’s middle C. Okay. So you can, so there’s two black keys all the way around. So that’s one of the first lessons I do with piano is here’s what C is. Can you find C and then just finding the recogni of like, okay, there’s a seat here, but there’s also one up here and there’s also one down here and there’s about eight other ones on the piano too
Jamie: (19:24):
<laugh> . Okay. And so there’s like, um, I probably should have a friend that’s musically inclined to come and help me
Sarah: (19:30):
well, if you wanna just like send me a picture or something, I can give you my number. You can so
Take a, that would make sense too, to take a picture and send it to all right. Thank you. I appreciate that. Definitely.
Jamie: (19:40)
Okay. And then, so what about like if they, um, I’m trying to think of like, if they want to learn how to play the guitar, but we don’t have a guitar, um, handy. What is, uh, something else that we could use until we could like get a guitar is
Sarah: (19:57)
So something else you could use instead of a guitar? Um, the, one of the cheap ways could be, uh, like a, uh, paper towel inside of a paper towel. Okay. Uhhuh <affirmative> you could just flatten that and that’s a, about the size of a guitar neck, and you could put the strings on there, but the oh cool. You could not like the actual strings, but could just like draw them on there. Right. And that could help you figure out, okay, this is where this finger needs to go. This is where this finger needs to go. Just to kinda get started before you can afford this. Yeah. Getting
Jamie: (20:29)
Used to it. Mm-hmm <affirmative>
Sarah: (20:31)
Okay. But the, the best thing would be to just get the actual instrument, but I understand that not everybody can afford it. There’s plenty of, you know, a, um, if you go to, um, like a music in arts or Burt’s music or something like that, they, you can rent to own the instrument, um, or black Friday’s coming up. Well actually, no black Friday is gonna be gone by the time this episode might be up. So, uh, there, there’s plenty of alternatives out there to guitar too. Like I, I personally cannot play guitar. I just don’t know what it is. It gets into my hand and I just, yeah, I freeze up, I, I, there’s some sort of mental block, but UK ukulele is much smaller. It’s cheaper has four strings instead of, um, I wanna say guitars have six <laugh> six, but I feel bad not knowing that off the top of my head, but um, oh
Jamie: (21:22)
Yeah. So ukulele, that would be, yeah.
Sarah: (21:24)
Ukulele is smaller. It’s better for smaller hands too. It’s um, it’s probably about like this big <laugh> I’m holding up my hands audience. Can’t see it, but
Jamie: (21:32):
It’s OK. Yeah, that’s fine. Yeah. Right. Yeah. So that’s good. Yeah. Um, it’s always good. At least in my experience is to learn something that’s a little, uh, less calm, complicated at the beginning and then like work your way up. So that would be a great alternative is yeah, you mm-hmm <affirmative> so, and then, so what about like translating like a xylophone to piano? Is that like a good transition or
Sarah: (22:07):
Absolutely. So xylophone, uh, generally only has the white keys, which would be C, D E F G a, B, C, D, whatever. Um, and most xylophone that you purchase, come with the letters already on them. So if you get some music, uh, even if you don’t know how to read music, there’s, uh, certain, um, you can search for an image of, um, letter they’re called letter note heads. It’s where instead of just like the black circle with the line on it for a quarter note, it’ll have the letters name written inside of it. Okay. So that would be a, that would be, um, an easy alternative to like, you would eventually learn how to read music by there, but that could get you started with, came on a play on the xylophone. Um, but you could use any sort of xylophone, like if you go, you can get one for $20 at target. Cause you know, children’s xylophone and like the baby section of target is still XLOPHONE <laugh> right.
Jamie: (23:06)
That would be my speed. So yeah.
Sarah: (23:07)
<laugh> And there’s, there’s no shame in Learning.
Jamie: (23:12)
I’m gonna get started on learning that, uh, that instrument. Yeah,
Sarah: (23:16):
Right away. EV everybody has to start somewhere and there’s no shame in wherever that is exactly.
Jamie: (23:21)
<laugh>. Now, can you give us, um, uh, any more, some other examples of like, like ways that you, um, maybe, um, as a music teacher that you’ve been able to, um, kind of include, make, include everybody to just make like your lessons inclusive, um, to people of all abilities like, um, the younger kids.
Sarah: (23:51)
Absolutely. So I I’ve recently been reading a book called music and special education and it’s by two music professors, uh, Mary S Adam, um, and Alice and Dar who I actually met Darrow a couple of years ago at, um, a music seminar. Um, anyways, uh, so I, there was a chapter in here that went over different accommodations that you can make or, or strategies for successful inclusion. Okay. So one of the things that I really liked that I didn’t realize that I do, it was called universal design for learning, which is essentially you make accommodations for the entire class. So that way that one student doesn’t, or if there is just one student who needs accommodations, they don’t necessarily feel left out. So for example, if I’m doing a rhythm activity where I want everybody to play drums, but sus Z, for whatever reason can only hold Moroccans instead of play drums, like the rest of the class.
Sarah: (24:50):
Okay. Instead of having that be the situation, I would split up the class and say, okay, this half of the class is going to play drums. And this half of the class is going to play Moroccos because when you’re learning rhythms, it doesn’t necessarily matter the, like whether you’re playing a drum or a Mor you can still play quarter notes or play ACE notes on that. Um, so trying to keep your lessons tailored to, um, allowing all students to engage at all levels, because we’re always reading, singing, playing, listening, um, one of the things that I’ve done to help with that, um, you know, I personally struggle in this current era where everybody has masks on. And if there’s somebody who mumbles, I cannot understand what you’re saying. <laugh> right. So to help that with the students that we have, uh, I wear a headset in the class and it’s a speaker that’s attached to me.
Sarah: (25:41)
It’s, it’s a battery headset, um, that I plug in and charge every day. But that headset helps to make myself sound more clear for the students cuz I know otherwise they, they would be struggling in some capacity too. Yeah, yeah, yeah. But doing, um, so universal design for learning, um, there was a section that I had underlined, uh, UTL is the flexible design of instruction, instructional materials, a, an evaluation of student learning that can be used with all students without need for specialized designer adaptation. Uh, another section of this chapter talked about collaboration. Um, so if you’re a te if you’re any teacher, if you’re a parent talk to the IEP team of your child, because they, they know your child just as well as you do. And you can all talk collaboratively on how maybe instead of participating in a 45 minute class, because someone might get, um, a little bit cranky after having all of that sound stimulation.
Sarah: (26:44)
Cuz I have a few students like that. Um, maybe instead of coming for the full 45 minutes, they come for half the period and then they go for a five minute break and then they come back. So that way they can get that, um, that reset from the, the sound stimulation or maybe just there’s some instruments that you just don’t play for that particular class P um, another thing is adaptations. So maybe pairing, if you have a student who just needs more one-on-one attention that you can’t necessarily give, if you have group projects, pairing them with a friend or, uh, do video recordings. So that way in between classes that student or the entire class has something that they can watch to practice. Like for us, we have a performance that we’re doing in March, but we only get to see the students once per month.
Sarah: (27:29)
Oh wow. So we recorded all of these videos. So that way they would have something to practice along with and it’s just setting them up for success. So that way they have a good performance and they have a just overall a positive experience. Um, you can also print music or just any sort of hands out in larger font, uh, allowing them more practice, time, learning time, or just more time to respond to questions. Um, or even just assigning a student as a student helper. Um, this year I had a student who I have had to assign as my student helper because it’s something that I did now. He looks forward to it every single class period. So when, uh, I pass out the rhythm sticks, he’s like, miss Sarah, can I do this? Like, of course you’re my helper. Let’s go. And that has kept him out of trouble since that first class period. Oh wow. Just him having that one little thing to look forward to.
Jamie: (28:22)
Oh, that’s so nice. That’s so nice. So you said rhythm sticks. What are, what are they, uh, what are rhythm sticks?
Sarah: (28:29)
So rhythm sticks are, uh, they’re built, they’re a little bit different than drumstick. They’re still made of wood, but they’re these big, chunky cylinders. Okay. That are probably about like, um, say like about 18 inches long, but it’s larger. So that way students with smaller hands or any sort of, um, fine motors challenges would be able to, to grab it and, and play it. So it’s easier to grab.
Jamie: (28:57)
Okay. So they’re kind of like what I would think of as like a Baton maybe, but yeah, but shorter. Yeah. Oh, okay. Cool. Rhythm sticks. Cause I, I was picturing like, like a rain stick for some reason. <laugh> so, so what are, so what are the, um, some of the instruments you use with, with like, with your, with your kids, with the, I guess I would say, you know, like middle school and younger, what are there instruments that you use with everybody? Like the rhythms, the rhythm sticks and the Moroccans and the tambourines.
Sarah: (29:31)
Yeah. So, uh, I like using drums. Cause if you whip out drama, it’s like, oh man, this is the best day ever. Right. <laugh> it’s like I get to hit something and it’s okay. Yeah. Um, tambourines are also fun. I like to use tambourines and any sort of like jingle bells sparingly because I’m finding that, um, those instruments have a higher Tamber, so they’re, they’re more high pitched and more jingly. So those are the types of sounds that are more likely to make the sound, make a sound sensitive students. Um, okay. Trigger them so to speak. Okay. Mm-hmm <affirmative> um, so I like to use those instruments more sparingly, but uh, Moroccos rhythm sticks, drums. Um, uh, xylophones are another good one. Uh, we have, um, they’re called Orff instruments because this guy, this wonderful musician, Carl Orff, uh, designed mambas, which is like a, like a piano, but it’s made out of wooden bars or resin bars, just different material. Um, and he took that and made it in elementary scale. So it’s a XY for one that’s made out of either wooden, um, wooden bars, which they just call xylophones or metal bars, which they call metal telephones. So again, like those sound sensitive students would not get them at telephones because they just have a certain, they vibrate a certain way that just right. Doesn’t feel great on the ear drums. So, uh, those wooden ones are a lot more soft sounding. Oh
Jamie: (31:03)
Wow. I had never heard of the wooden ones before that. What a great idea. Yeah. Cause it’s a little bit different sound, but you get the idea and it’s yeah, definitely. That makes sense. That’s that’s really neat.
Sarah: (31:13):
Yeah. And then for like middle school students, that’s usually when we start to get into the, do you pick chorus where you’re singing and, and maybe playing like some pers percussive instruments or do you do band where you’re learning flute, uh, clarinet, saxophone, trumpet, trombone tube, but like those types of instruments or do you do orchestra where you’re playing, uh, a violin, Viola, cello bass, something like that. So it, it just depends on the child, but whatever instrument they choose, there’s some sort of accommodation out there to be able to help them. Uh, like I’m a part of on Facebook, there’s this band director’s group where people will post, um, three things that they have 3d printed to help out their students. Um, there’s this one director who had, excuse me, uh, a student who, uh, broke her arm, but said, Hey, I made this thing that allows her to still be able to play the trumpet.
Sarah: (32:11)
And it was just like this pole that got stuck into a music stand and she was still able to play with the other hand. Um oh, wow. So, yeah. And he was like, this is all that I did to make it here’s the, like the PVC plans or whatever that I use. Oh. Or, um, so cool. People who have 3d printed stuff. Um, yeah. Like for, uh, a recorder, which I wanted to show you what a recorder was. It’s it’s, it’s this thing <laugh> okay. So, uh, it’s got holes that you put your fingers on, but there’s things that you can 3d print to make the holes easier to cover. Cause playing recorder is all about, if you don’t cover the holes, right. It’s not gonna sound great. So for students who have smaller fingers or students who have difficulty moving fingers in, there’s definitely ways to, there’s something you can really that’ll help with with that being able to cover the stuff.
Jamie: (33:05)
That’s really neat. That’s really neat. So we’ve talked a little bit about, we’ve talked about all different kinds of things about music. So, um, in your, um, from the time you start one of your classes until the, the end, do you see like a big difference? Not only in like the students, as far as like their musical abilities, but maybe other aspects of, of the class or have you, has that been your experience? Have you noticed a big change from like the beginning, I guess even just like musically from the beginning of your classes to, to the end for your students, like they have their aha moments and
Sarah: (33:52)
That, that’s a great question. <laugh> um, <laugh>, it, it really depends on the concept being taught, uh, with things that are more black and white, like, you know, this is loud, this is soft. Kids have an easier time of grasping things like that. But when you get into things that are a little more obscure and less concrete, like, um, like different temp bows, uh, you have Largo and Presto. So, uh, there’s this cartoon that I show them of, you know, Largo is the turtle and Presto is, uh, the, the bunny rabbit usually. But in this cartoon, Largo is a bunny rabbit. That’s just going so slow. Cuz he decided to eat a whole bunch of cupcakes before the race. And then the turtle’s the one that’s really fast. Oh wow. That sounds confusing. So sometimes that can confuse them, uh, because I’m like, oh no, the bunny rabbit’s supposed to be fast.
Sarah: (34:50)
Why is the bunny rabbit not fast? Um, right. Yeah. So there’s, there’s things like that. And then, uh, when you start talking about, uh, Tamber, like things that are higher pitched lower pitch, uh, you know, I usually have to say, you know, higher pitch notes are like Mickey mouse <laugh> and then, uh, you know, your lower pitch notes are, uh, like wait on here, like super low. But um, even having them demonstrate that sometimes students have difficulty with that. And that’s usually not something that, you know, once it’s introduced, it might take three or four class periods maybe even entire year for a student to be able to grasp that. Yeah. But the goal of like my music classes isn’t necessarily, we’re gonna teach you this one concept and you’re gonna learn it right now. Like that’s all you’re gonna learn. Um, it’s usually over a period of time because I don’t want them to just learn that one thing.
Sarah: (35:39)
Cuz music is like a rounded thing. There’s so many different pieces and just one class period can’t teach like just one thing. Um, so I like for my students to be able to, they walk in it’s a positive environment. Um, nothing you do is ever wrong, even if there’s a wrong note. It’s oh, that’s okay. Let’s try it again. Let’s try it one more time, but do it a little bit differently. Um, because when you, when you come at a student and say, you know, like, oh, you played a wrong note here, do it this way. They sometimes that’ll just feed the student may shut down at that point because maybe they’re not looking for that sort of nugget. Um, maybe they’re looking for oh, like that was, that was a great job. How about we try this? So just don’t even address the negative behavior at all. Just say, okay here, just, just change this thing.
Jamie: (36:29)
Okay. Yeah. Yeah. I mean we all make mistakes, so I mean absolutely. And that’s the only way we re we truly learn, so. Yeah,
Sarah: (36:38)
For sure.
Jamie: (36:39)
Right. Um, let’s see. So I did have another question. Hmm. Sorry. Now I’ve, I’ve, I’ve lost, lost my train of thought. Um, well we’ve learned a lot today. Oh, I know what it was is I never asked you. So how <affirmative> typically, how long are your classes? So you were saying the one, the one class is just once a month or that’s a club.
Sarah: (37:12)
So, uh, my coworker and I are currently teaching music at San Marino unified. So we’re at, uh, the two elementaries schools that are in that school district and we swap between those two schools. So we’ll teach two weeks here, two weeks there, but then we’re back two weeks later. So each class gets one. They, they each get one class per month and that’s 45 minutes. Yeah. But then, but then I also teach, uh, individual students. So, you know, like every, I have somebody that I teach after school. Uh, but they get either 30 of an individual, 30 minute lesson to learn an individual instrument or like I have some piano and voice students. Okay. Um, or they will do a one hour once a week lesson.
Jamie: 37:57)
Okay. All right. Yeah. So those would be, yeah, it would be really hard to see much of an improvement. Just seen some of the students just once a month. Wow. Just once a month. That’s
Sarah: (38:08)
That’s what those videos are for those videos are gonna save the performance
Jamie: (38:12)
So important. It’s a shame that they only get, you know, exposed to, to uh, your class just once a month. Wow. Yeah. Okay. Well, it’s been really nice chatting with you. Um, is there anything else that you want, uh, you would like our listeners out there to know about music and how important it is for people of all abilities <laugh> is that not a seriously, uh, loaded question that would, that might take you a long time. That’s
Sarah: (38:40)
I mean, I mean, that is a loaded question, but music is just so great for students of all abilities because music is like, no, no other creature on this planet makes music the same way that we do birds use music to communicate. And so do humans, like we could, uh, I could go to a place where I have never spoken that language before. Like if I go over to Italy and sit in with, with, um, a band or an orchestra and be able to play my flute with them without ever having to communicate with them. Cause I just say, okay, uh, they they’ll point. And then we just start playing music and it’s, it’s, it’s just a feeling that can’t be described of being able to right. Just make music with somebody without having that communication barrier. It’s also a great way to express yourself. Um, you know, for, I had a train of thought and it left me the train left the station. Uh
Sarah: (39:37)
Music is a great way to put feelings into words. So if you have a student who is diff, who has difficulty expressing themselves, uh, maybe you could, um, you know, take different songs and say, oh, do you feel more like this song? Uh, you know, like, um, the it’s by ever Greek, what’s it called? Uh, morning. Um, it’s like, it’s from a, like, you can take any classical piece of music from a bugs bunny, from a bugs bunny cartoon. Okay. And take it and put it to some sort of mood and say, okay, do you feel more like this one or this one? And they can just like point, um, but it offers a level of expression that words can’t. Oh yeah. So it it’s great for all, all peoples, not, not even just students, everybody to be able to li just listen, listening to music, to be able to express themselves. Um, you don’t even have to perform music to be able to express yourself. You can just say, oh, Hey, like I really like my chemical romance or I really like, uh, you know, listen to classical music or I really like listening to queen things like that. And that can also help you connect with other people. It’s a great, um, talking point for starting a conversation.
Jamie: (40:48)
Mm-hmm <affirmative> cool. Cool. Yeah. Like you, you had said earlier, I believe that, uh, everyone is, is actually a, a musician is just absolutely. Some of us just play of the radio, but I actually, I, um, I play some air guitar and some other things, you know, I like to bang on the drums.
Sarah: (41:07)
Yeah. Like everybody, everybody feels music in some capacity. And like you said, we are all musicians in our own. Right. Whether it’s we just move to music or we play music or we’re we listen to music or we play the radio it’s we all, we all do it in our own way. Yeah. Okay. Awesome. Well, thanks for having me. It’s been, it’s been great chatting about music.
Jamie: (41:29)
Yeah. Thank you so much. I really appreciate your time. And thanks everybody for listening.
Early Intervention From a Physical Therapist’s Perspective
Andrea, a Physical Therapist, talks about Early Intervention and the importance of Pediatric PT in children 0-3 with developmental delays.
Host: 0:19
TES and IRL is providing this podcast and as a public service, but it is neither a legal interpretation nor a statement of TES and IRL policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by TES and IRL. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by TES and IRL employees are those of the employees and do not necessarily reflect the view of TES and IRL or any of its officials. If you have any questions about this disclaimer, please contact TES at https://www.tesidea.com/contact-us/or IRL at https://www.redesignlearning.org/contact/. Thank you for joining us for another episode of I am able the goal of our podcasts to bring acceptance and awareness to our communities when working with educating and living with people of all abilities.
Jamie: 1:26
Hello everyone and welcome to another episode of I am able I am your host Jamie Lord Tovar. And today with me I have Andrea Jarvis.
Andrea: 1:39
Yes. I’m great. Thank you.
Jamie: 1:42
Thank you so much for agreeing to talk to me. My pleasure. So can you give me a little bit of your background? Can you tell me first, what is your occupation? What is it that you do?
Andrea: 1:57
I am a physical therapist.
Jamie: 1:59
Okay. And so what is your education background?
Andrea: 2:04
I graduated from physical therapy school as a doctor of physical therapy in 2017. So I’ve been practicing as a pediatric physical therapist for four and a half years. My whole career thus far has been entirely in pediatrics.
Jamie: 2:17
Oh, okay. Great. All right. So today, we’re talking about early intervention. Can you tell me what your connection is with early intervention?
Andrea: 2:26
I am super passionate about early intervention. It’s my favorite area of Pediatrics. I was introduced to it as an area at my last, the last place that I lived, I came to California via Connecticut. So in Connecticut, I worked as a physical therapist and early interventionists there for two years before moving here to LA and working as a physical therapist and early intervention here. Oh, cool.
Jamie: 2:55
Okay. Yeah. For the folks out there who don’t really know what early intervention is, can you kind of tell us a little bit about it? What is an early intervention?
Andrea: 3:07
Absolutely. So there’s a lot of things that go into the definition of early intervention. The kind of short answer is that it’s a system of supports and services for infants and toddlers who are ages birth to age three, who have some kind of developmental delay, that developmental delay could be because of a medical diagnosis or some kind of diagnosed condition. But there are other children, plenty of children who have a developmental delay for an unknown reason, who just need a little bit of extra support to meet their milestones. Early Intervention can include a wide variety of professionals. I’m a physical therapist, right? There’s a lot of other therapists you know, occupational therapists, speech therapists, audiologists nursing nutrition, of social workers, psychologists, a lot of different professionals participate in early intervention.
Jamie: 3:58
So there’s a huge, huge population of people who, who were out helping with with our little ones that are under three Okay, so last I spoke with, Yuna, who’s an occupational therapist, so we get to hear a little bit about that side of early intervention. So today, we’re gonna get to learn more about physical therapy, which is really awesome. It’s something that I I’m, I’m an occupational therapy assistant. So this will be some this will be a place that I will actually be learning some new things to, which Is always amazing. Alright, so we’ve talked about developmental milestones. So for physical therapy, what are some of the milestones that you’re looking at?
Andrea: 4:47
As a physical therapist? A lot of motor development happens in those first three years of life, particularly that first like year and a half are really, really huge for for gross motor milestones that In his early months, I’m looking at rolling over sitting, crawling, pulling to stand walking kind of that progression. And then in those older kids, I’m looking more at like, stair climbing, running, jumping, throwing balls more that kind of active the things you think of preschoolers doing.
Jamie: 5:20
Okay. All right, cool. Nice. So, um, you said that with, with the little ones you’re helping with, like rolling over and things like that. When you talked about gross motor? Can you explain what gross motor is?
Andrea: 5:38
Yeah, so gross motor milestones, are those really big movements. So your movements that require your whole body if not your most of your body to achieve?
Jamie: 5:51
Okay, all right. So unlike with occupational therapy, we focus more on like the fine motor. So we’re working with mainly like, like the hands and you and you’re working more with the entire body?
Andrea: 6:04
Basically! Yes, yes, absolutely.
Jamie: 6:09
So how, how do children become? How do you get them evaluated? When they when you feel like there are some physical delays, some developmental delays?
Andrea: 6:25
The process for getting an evaluation kind of depends on your location, it depends on a few factors. But the one constant way to find get connected to an evaluation is to speak with your pediatrician. And have your pediatrician refer you for an early intervention evaluation. States are required to provide those services. That’s a requirement under law by law. So those services are available, regardless of where you are.
Jamie: 6:53
Okay, all right. So is it. So you’ve been in California a couple years you were practicing in Connecticut? Is there? Is it different as far as like getting an evaluation, the process as it is a different there than here? Or
Andrea: 7:12
the referral for an evaluation is a little bit different? How those evaluations get from being referred to maybe the therapist who’s going to do the actual evaluation, but the evaluation itself once a therapist is there in your home? It looks very similar regardless.
Jamie: 7:29
Okay. Okay. All right. So you were just saying so you can have treatments at at your home or in a pediatric clinic is, is that correct?
Andrea: 7:40
Yep. So you can have early intervention services, anywhere the child is so that could be in a clinic, that could be in a home, I work primarily in homes that could also be in the community to be at daycare could be at the park, the grocery store, the beach, you could go anywhere and find ways to foster a child’s development.
Jamie: 7:58
Okay. All right. So what are some? So you’re primarily you do your service at home? And which I would think would be like, the best place though, because you’re actually going to see the child in like, the context, their environment? And so it might be a little bit easier. Is that true, or than to go like to a clinic? Or is it kind of the same with physical therapy?
Andrea: 8:28
I think there’s sort of pros and cons to each I think the big draw to the clinic is for some families is that you have access to these really great therapy tools and you know, big trampolines and climbing structures and, you know, other therapy, things that you don’t have in your home. But a lot of families are drawn to services in the home because the therapist can really join the family and what they’re doing in there, in their daily routines can go to the playground that they play with their child with and see exactly how their kid always falls down those stairs every single time or why they can’t climb in their bathtub. And you know, you can see it hands on right there and right.
Jamie: 9:05
Yeah, okay. All right, cool.
Andrea: 9:10
I found it to be really, really valuable as a therapist, but also for families to be able to join them in what they do every single day and to really, really see what families mean when they tell you my kid can’t do this, or I get frustrated every time I don’t know how to help my child walk up the stairs or whatever. It’s, it’s really, really meaningful to join them where they are.
Jamie: 9:34
Yeah, okay. Oh, yeah, that’s good. Yeah, I’m with occupational therapy. I’ve kind of feel like it’s the same, because it’s just easier than because it’s sometimes it’s difficult with the parents to get, you know, the and the total picture because, you know, they’re not therapists. They don’t know exactly. You know, what we’re truly asking or maybe, you know, they’re not quite getting the whole idea. So, so when you have therapy in a gym, you said you use like trampolines and other things like that. Well, yeah, entered equipment that you typically use for like, four little ones for under three. In the, in the gym.
Andrea: 10:21
Yeah. So I actually don’t primarily work in the gym. So I my, you know, range of creativity with the gym tools is not as not as broad as, but definitely, you know, most gyms have like a set of stairs have some balanced themes and stepping stones and scooter boards. Yeah, trampoline and those sorts of things.
Jamie: 10:51
Yeah. Okay. Which kids love, right? Absolutely. So you have to be really creative than when you’re when even though you’re using like things that they use all the time. But I would assume that you might use some things a little bit differently just to increase like, their motivation, or do you like okay, do you help them with like, say, like, riding the scooter, or we’re balanced and things like that? Or
Andrea: 11:19
are you referring to in the home or in the clinic
Jamie: 11:20
in the home? I’m sorry? Oh, yes, yes.
Andrea: 11:23
Yes, in the home, you have to be really, really creative. But what’s fun about that is that we can use the things that are motivating to the child are often already there. And so you know, if they like their scooter, we can work on balance with the scooter. I love a diaper box, I can use a diaper box for anything across any stage of development. I love a diaper box and families have them every family’s got a diaper box laying around. Because we all know we go through way too many diapers in those first years. Um, so yes, you definitely have to get creative. But it poses this really fun opportunity for the parents or the caregiver, whoever that is, and myself to kind of figure out what they’ve gotten the home I might have, you know, you say you want to work on something balanced that your child’s balances is you’d have some concerns about that. Here’s kind of an idea I have, how could we make that happen? What kind of steps will do you have? Or what kind of what do you and parents come up with the best thing better than anything I could ever come up with using the things that they have laying around, which is really fun.
Jamie: 12:32
Oh, that’s awesome. That’s really good. So it sounds like parents or caregivers are totally involved in the treatment, then they’re with the collaborating with, with like goals, the different things that they’re looking forward to have help with. And then also coming up with ideas. And then so then you give them like, an occupational therapy, we do a lot of parent education, I would assume with physical therapy. It’s, it’s very similar.
Andrea: 13:07
Yes, yeah. So parents are definitely involved in sessions and caregivers, whoever it is teachers, if we’re at a daycare or preschool, I’m definitely involved. And they Yes, we always come up with something together to do between visits. So with my families, I usually say my, I usually ask the question, what stood out to you today that you want to work on between Now in our next visit? That’s my go to question. Sometimes parents are like, Yes, I know exactly what I want to work on. I want to do this, this and this, or just this one thing, I oftentimes just one thing, just to focus on. Sometimes parents don’t know what they want to do. They don’t know what they want to work on. So they sort of I don’t know, what do you think and that provides a really, a really nice opportunity for me to really collaborate with them and kind of remind them well, we worked on, we worked on walking up the stairs today, we worked on you know, this and this, one of those things seems valuable to you and important to you. And usually they’re able to narrow down and pick something that I always asked at the start of the next session. I always asked how did it go, you were going to work on fill in the blank. How do they go? And usually they’ll say, Oh, wait great, or Oh, my goodness, it went terrible. And I don’t know what happened. You weren’t there. And it provides a really fun opportunity to problem solve with the family to figure out how to make that better.
Jamie: 14:32
Okay, good. And it sounds like and then if you you’re giving them homework to do when you’re not there, that and then you kind of you’re holding them accountable for like okay, you know, I expect you to do this and so that’s really good. That’s absolutely I’m getting some when I decide I want to do home health care and OT now I have some good, some good ideas of, of ideas of things to do with the parents and things that are out So see, I’m learning more stuff to love it. So for physical therapy, how long are the treatments usually are they like an hour or?
Andrea: 15:15
It so depends on the child. So anybody, babies often don’t make it a whole hour, they just don’t. Um, the rest of that hour could be used to, you know, could really collaborate with the parent and do some problem solving maybe if the child’s not like actively practicing rolling or something. Um, but sometimes those sessions are a little bit shorter and older kids can do a little bit longer, it seems like an hour is kind of the average typical Across Ages, I think most therapists kind of recommend an hour total. And that provides plenty of opportunity to review what you know, the quote, homework, the things that you were supposed to work on that you said you were hoping to work on with your child and then join them in their routine and continue on the growth and learning.
Jamie: 16:06
So and then. So like for occupational therapy, we usually have our sessions are like, either like once a week or twice a week. Is that the same for you? Typically?
Andrea: 16:19
Yeah, and again, it so depends on what the family’s priority is, and how much support they feel they’re needed. I mean, early intervention is ultimately the goal of it is to support the family in order to support the child. So, you know, if I kind of do an evaluation, and I think, okay, my recommendation based on everything I’ve heard, my professional recommendation would be one time a week for an hour, maybe that’s what I would say. And then the family, you can see it on the caregiver space, if they agree or disagree. The parent might say, Okay, I’m feeling really overwhelmed right now I don’t, I don’t feel like I have the tools I need to be able to, to support my child. So maybe we’ll we’ll talk about okay, we’ll do twice a week. And then we can bump that down. As you feel more comfortable and gaining the tools you need to support your child. So it’s definitely for me and every therapist is a little bit different how they get to that point. For me, it’s very much a collaboration and and based on what the family kind of support the family feels like they need.
Jamie: 17:17
Okay, cool. And so you had said before now I’m but I’m thinking back to the diaper box. You have all kinds of activities that you can do with that. So can you give me some examples of like what you would do with like a maybe like a really little kid. And then maybe even though we’re talking about early intervention, maybe like some someone a little bit older, just so we kind of get an idea of what,
Andrea: 17:46
yeah, so for like an itty itty bitty kiddo, under the age of one, a diaper box is the perfect height for kneeling is like sitting on your knees and makes like a nice little table to play with a toy. And pulling to stand standing supported add a little surface to play with a toy. They’re often especially if they’re full, or you can weigh them down, they’re there, they feel a little bit more stable than maybe some of the other toys that a child might be playing with at that stage. So that’s like a little kid under the age of one that would be something that I would do. I’m like maybe older, like 2123 years old, kind of a little bit older once they’re walking and climbing, climbing in and out of a diaper box is a motor planning activity. How do I get out of this box without it slipping over on me and falling? How can I put my things in and take them out? I’m even older kids than that. If you’re talking about you know, 567 older, you can do toe taps on a box, you can use it like a step up. If they’re really really, if they’re really really big, you can jump over you can use it as part of an obstacle course and run around it. You can use it for anything. Oh, wow. It’s a fun tool.
Jamie: 19:02
Sounds like so you do a lot of obstacle courses to then for during your treatments or are just saying
Andrea: 19:14
I don’t typically do a lot of obstacle courses mostly for the reason that I’m, well there’s two reasons my my caseload tends to skew a little bit younger. So a one year old isn’t really going to participate in an obstacle course the same way a five or six year old would right um, but also I I’m really really focused on what a child’s doing in their daily routine and really joining that child and what they’re doing so it’s very, I’m whatever the child is, if I’m doing it for playtime, which is typically what motor skills that’s the routine motor skills fallen. I’m really joining that child in what their activity they’re directing and sort of modifying the environment to achieve what it is that the parent is hoping to do. So it’s I’m doing less structured, we’re gonna step up and down 10 times and more. The child is we’re learning to walk, and they’re really engaged in this ball, how can we use this ball to promote they’re walking in what they’re already doing?
Jamie: 20:15
Okay, all right. So like use the ball is like a motivator to move in a certain way or direction?
Andrea: 20:22
Yeah, absolutely.
Jamie: 20:25
So what are what are some of the other activities that you do more often? Like? What are some I know that you have like a wide range of, of clients, and everybody’s different. But are there a few things that you in your, in your practice that you typically see? Or are there any activities that that you work on more often?
Andrea: 20:56
So my, my caseload skews, sort of learning to walk and under on the developmental continuum. So most of the activities that I’m doing with families and their their kiddos is just driven around, playing with toys and interacting with toys for movement. So for a kiddo who’s learning to sit that would be figuring out how to arrange the toys, so that it promotes their posture to be more upright. If it’s a little kiddo who’s rolling, it’s using those toys to motivate them to turn over and, and beginning to use those hands to reach towards toys. And older kid that might be spreading toys out all over the couches and things to try to motivate them and promote their movements in a standing position between different surfaces or towards different toys.
Jamie: 21:51
Okay, so how do you when a child is having difficulty with like crawling, crawling, how, what do you? What are some of the things that you do to help encourage crawling or?
Andrea: 22:06
Well, the big question is, why are they not crawling? So the first step would be to figure out, is it because they have low tone and, and a weak core? And they physically can’t support themselves that way? Is it because they figured out that it’s faster for them to army crawl on their belly while they’re holding their toys than it is to be on their hands and knees? Um, is it because they have pain or tightness somewhere? It’s so step one would be to kind of figure out why. And then step two, to figure out the motivating factor for that kid, kids don’t want to move unless they want to, we can’t make them great. So figuring out that motivation for that child is that huge, huge step.
Jamie: 22:51
So it sounds like you spend a lot of time like trying to solve puzzles or mysteries, your Creator, and in a way,
Andrea: 23:00
it’s so true. It’s so true. And I say to some kiddos, and I’ve said to parents before to you are just a little puzzle, to figure out I use that phrase, you know, talking with I do because it’s it truly is a little puzzle. And you have to kind of take what you’re seeing and figure out how to get from what you’re seeing to what the parent is hoping to see. Yeah, it’s fun, though. It makes it definitely keeps life interesting. And you never know what you’re gonna get before you walk into a session. So it definitely keeps you on your toes.
Jamie: 23:32
Everybody’s different. And just depending on food, yeah, you just Yeah. You don’t know what it’s absolutely, what your day is going to be like. So you had mentioned low tone, can you tell the audience what low tone is in case they’re not aware?
Andrea: 23:47
Sure. So the muscle tone of a child is how responsive the muscle is to movement, and willing to engage in movement. So a low tone child would be that would be a child where you pick them up, and they just like flop into you, they have no resistance to you picking them up. They’re just like a floppy baby. They are a blob on the floor, they don’t move a lot. They’re just kind of just kind of their content to be there. Whereas a high tone child would be like the kind of tone that you would see in a child maybe with cerebral palsy where their muscles are really, really, really tight and they’re, they’re very tense stuff that would be a high muscle tone, a high muscle tone in a child.
Jamie: 24:34
And so what do you do if a child has like high muscle tone? Do you do stretches or is there a way to try to loosen them up?
Andrea: 24:48
So tone muscle tone, high muscle tone typically does not change with well muscle tone in general doesn’t change without some kind of medical entity. Attention. So high muscle could kiddos who have high muscle tone might get like a botox injection, they, you know, could have some kind of medical intervention, there are positions that you can put children in to sort of break we call kind of breaking their tone or sort of get them into a position where their tone is not as active. And that kind of depends on the child, it depends on what what positions their tone is, in not every child has just global high tone or global low tone, where every muscle in their body is the same, there’s typically a variety of tone.
Jamie: 25:40
So that sounds like then positioning is like one of the things that you can do to help with the tone either high or low.
Andrea: 25:49
Yeah, absolutely. So you know, working with working with parents to figure out, you know, how can I support my child in a highchair if it’s a high tone child, they might kick out and like straighten their body and not want to relax into sitting. So figuring out what kind of support that child needs to be able to relax their body into sitting for a low tone child, that may be the kid that just like melts over as they’re eating and like kind of flops to one side. And so you know, figuring out what we can use to support their trunk a little bit more on the sides or putting, you know, just figuring out the straps, maybe some shoulder straps or something to promote upright posture.
Jamie: 26:29
Okay. Alright, let’s see. So, um, let’s, you’ve answered most of my questions are ready? Do you have any advice for parents out there who think their child might not be developing the way that they, they feel like they should be or as quickly as they should be?
Andrea: 26:55
Absolutely. So the two things that I would say are the first, that you as the parent are the expert on your child, and you’re the your child’s biggest advocate. So if you have any concerns, regardless of how silly or small or whatever that you think they might be, it’s worth mentioning, because if it’s true, if it’s alerting something in you, then it’s worth mentioning, you can always bring that up to your pediatrician, it’s better to get an evaluation and for the evaluator to say, oh, everything is going great. These things are on track, here’s what you can look forward to in the future, then to kind of wish you had done that sooner. Um, I also like to remind parents that just because their child does have a delay in an area is not at all a statement. On the, you know, your ability to be a parent, and your ability as a parent and I and recognizing that you need a little bit of support and your child needs a little bit of support to meet those developmental milestones is a huge sign of love and care for your child.
Jamie: 28:00
Like that, that’s, that’s good. Is there anything else you’d like to share with our listeners?
Andrea: 28:08
Nothing in particular, I love early intervention. I’m I love it. You know, from a provider perspective, I think it’s the most fulfilling area of physical therapy practice and I want to be involved in early intervention in some degree for the rest of my career. There’s so much so much to learn and, and do and, and so many areas to grow in just within those first three years of development. It seems like such a tiny part of a child’s life, but there’s so much that happens there. And it’s so full of, of opportunities to learn.
Jamie: 28:43
Right? Yeah. I mean, it’s, it’s amazing how much children learn from the time they’re born up until three years old. It’s just, yes, little sponges. It’s just amazing.
Andrea: 28:54
It is very rewarding. It’s so rewarding to see that like that change and and the excitement that families and parents have when their child reaches a goal that they’d set for themselves or for their child. It’s, it’s so rewarding. I mean, I love what I do. And yeah, it’s amazing.
Jamie: 29:14
Oh, yes, it’s pretty apparent that you love what you do. And I really appreciate you talking with me about early intervention and physical therapy today. Of course.
Andrea: 29:28
Happy to do it.
Jamie: 29:30
All right. Well, if there’s nothing else that you’d like to share with our listeners. All right. I think that that’s it. Well, thank you again, so much for talking with me today. And thank you everyone out there for listening to I am able. I hope that you have a really good evening. Thank you so much.
A Teen Advocate for Tourette Syndrome
Avery, a teenager with Tourette Syndrome, speaks out about the disease and how she lives with it on a daily basis. Avery has been a Tourette Ambassador for the Tourette Association of America for two years. She educates kids via zoom, however will start in person when the pandemic is over.
Host Speaker 0:38
Thank you for joining us for another episode of I am Able. The goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities. TES and IRL is providing this podcast and as a public service, but it is neither a legal interpretation nor a statement of TES and IRL policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by TES and IRL. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by TES and IRL employees are those of the employees and do not necessarily reflect the view of TES and IRL or any of its officials. If you have any questions about this disclaimer, please contact TES at https://www.tesidea.com/contact-us/or IRL at https://www.redesignlearning.org/contact/.
Jamie: 1:51
Hi, everyone, welcome. I’m Jamie Lord Tovar, and I’m now here with Avery. How’re you doing today? I’m doing good. How are you? I’m pretty good. Thank you. So we were talking with your mom about Tourette Syndrome earlier. So can you tell us your connection with with Tourette community?
Avery: 2:16
I am a Tourette ambassador for the Association of America. And I’ve been a youth ambassador for about two years now. Um, and I just tell people about Tourette syndrome and what it’s like to live with it. Oh really? So do you go like to different schools? Or how do you tell people about Tourette Syndrome? Uh, mostly through zooms right now since the pandemic we’ve been doing zoom meetings with classrooms of kids, with parents, teachers, like new parents, of kids with Tourette Syndrome.
Avery: 2:56
Kind of like everybody, I’ve done meetings with Girl Scout troops. It’s kind of everything but once the pandemic is over, I’m gonna start doing in person. Okay, so do you feel like is it kind of nerve wracking to do to speak to others over zoom? Or which do you prefer Do you prefer like in person or you can zoom personally for my like, The nerve of it, I prefer over zoom. But for information education wise, I would prefer in person because I feel like it’s easier to get my point across when I can actually see them and they can see me and I think it also over zoom. They can’t see me very well. And I want to be able to see that for them to see me ticking so in person, they’ll be able to see an actual, like example. Oh, right, right. Yeah, cuz cuz it’s not just all from because when you’re doing your, your zoom, and I would assume like we’re doing right now or it’s mainly just a headshot. So yeah, the full effect. Yeah, exactly.
Jamie: 4:02
That makes sense. That makes sense. So your mom said the year you go to high school? What high school do you go to?
Avery: 4:18
I go to an independent study school in Fair Oaks. Called Meraki High School. Okay, it’s lesser known, there’s not a lot of people that go there. We have like, a little over 100 students this year. And we have a few teachers who each teach one subject. So I’m really flexible right now. We’re kind of like in person and at home work right now. Because during the pandemic, they found that people actually thrived while working from home so they let people work from home and that’s cool now but nice. Yeah.
Jamie: 4:48
That’s cool. Yeah, I’ve, you know, in my experience, I found kind of either it works for works for a lot of people. It doesn’t always work for people. But yeah, I mean, it is. It’s great.
Avery: 5:00
We’ve all discovered this format, I guess. Yeah.
Jamie: 5:04
So um, so what is like a typical day of school like for you. So I guess you could tell me like, how it is on doing it virtually, and then also in person.
Avery: 5:28
So since we can work either in person or at home, it depends on like how I’m feeling in the morning, whether I’m going to go to school or not. School technically starts at 9am. But students can show up whenever they want.
Avery: 5:34
It’s just whatever feels comfortable for you. And whatever, you know, we’ll be successful for you, they want you to do that. So sometimes I work from home, sometimes I go into school, when I do go to school, I go in, I have to sign in to just Google Forms just to let them know that I’m there where I’m working. And I brought my own chair to school because the chairs at my school, I can’t really sit in them for long periods of time without having to leave and getting uncomfortable. So I asked if I could bring my own chair. And they said, Yes. So I brought a chair that’s comfortable for me that I sit in for long periods of time. And I have a sign on it that says off limits due to COVID for Avery only.
Avery: 6:21
And so I sit there when I need to work. And that’s kind of like my area. And it’s right next to this fish tank that we’re going to be working on, which is exciting, because it’s gonna be a nice soothing area. And that’s why they chose to seat me there.
Avery: 6:35
But I put in my headphones, and I just work on anything that I have going on. We don’t have like, actual classes. So you don’t have to go in anywhere you can just, it’s all of our work is online. So we go online, and we’ll do work at school. But it’s we can do it from home too. But if I want to, you know, feel like I’m actually like, participating more than I’ll go to school and also to get me in the habit for when I go to college, since I’m a senior.
Jamie: 7:06
Oh, yeah. So do you. Excuse me? So do you know where you’re going to go to college yet? Have you? Have you decided?
Avery: 7:08
Yeah, I want to go to a community college. To get my academics out of the way. I’m planning on going to ARC because I already have an a student account with them, because I did a community college class a few years back. Um, but I’m gonna go there for about two years. And then I’m thinking of moving to a four year college to get my degree in graphic design.
Jamie: 7:34
Oh, great. That’s, that’s a really good plan. I, I, I highly recommend the California Community Colleges, I’ve been to a couple and they’re really great. And it’s, it’s really great. I grew up in a small town. And so my, my class was not much bigger than yours. My, my graduating class was 148 people. So right. So so I think that that’s a really good plan for you is to start because they’re, you’re just, they’re just wanting your to succeed. So I mean, really, like sometimes big universities, it’s kind of scary, and they feels like they don’t want you so much to succeed. It’s just like, okay, sink or swim, but community colleges like, Okay, we’re going to help you, you know, to succeed, which so, so great. So graphic design. So my mom said that you were an artist. So do you do graphic design and other types of mediums, or
Avery: 7:50
Um, I started out like, with, like physical stuff like painting on canvases and paper and sketching. But I recently got an iPad, and I’ve been working with digital art, which is really fun, because it gives you so much more options. And you can do so much more and explore a lot of different like, types of art. Like I learned how to create like business cards, and that’s really fun, like designing things and super fun. designing logos. creating websites is also really fun, you can do all of that. And I really want to get a job in like just creating people’s businesses and brands and like creating art for people’s brands or whatever. Because that’s something I can do from home. But I want to get my degree not so I can you know, do art as a living that I think that would work out really well for me, right? Yeah, that was that would be great.
Jamie: 9:31
I’m jealous. I always wanted to do that. But I just didn’t have the drive to, to continue to promote myself, you know, with my artwork and I guess, you know, we don’t always have the just the confidence, I guess, you know, so I’m sure you can relate as an artist that sometimes it’s like, I don’t know if my stuff is that great.
Avery 9:53
So what really helps is my teachers, I they always see my art and stuff so they know what I’m capable of and they always preach for me and they always show examples of my work which kind of helps a lot when I soldier so they kind of exposed for me but I do need to learn how to expose myself because I can’t have other people doing the exposure but
Jamie: 10:00
Well, I mean, you know, you become a, you know, famous artists then you can have your assistant can go out and promote you as something.
Avery: 10:20
Yeah, my mom’s my manager basically.
Jamie: 10:26
Oh, hey, nothing wrong with that.
Jamie: 10:31
So you said that you that you have some of your teachers promote your work and things at school, is there anybody else that you would turn to for? For guidance at school?
Avery: 10:36
Yeah, I would basically turn to any of my teachers, since there aren’t a lot of teachers, they can really get really good one on one connections with the students. So I’m, like very close with all my teachers. And they all know my situation. They know like, my accommodations, anything that I would need, and they always tell me to feel free to come to them if I have any problems. And they’re always reaching out and asking if I needed anything, which because they know that I have a problem reaching out and asking for things, which is really cool. But they’re always asking me about my Tourette’s asked me what’s going on in my life, like, asking me about my family, asking if there anything, there’s anything I need anything new. And then if there is anything new, they’re like, oh, I don’t know about this, can you like explain so I can help you in the future. And I think I’m so blessed to have such a good support system out of school, like, I went to public school for a month, and it was horrible. The support is there to even have a support system there. There was no support system there. The teachers didn’t understand that the students didn’t understand. But
Avery: 11:50
that’s because they didn’t want to understand that they didn’t care. But my teachers and the kids there, they all really care. I kind of have a support system everywhere, which is really great.
Jamie: 12:01
That’s awesome. That’s really good. So are there other other students there that have similar diagnosis? Or you or is it?
Avery: 12:11
There’s independent study a school is mostly like there’s a lot of kids there that can’t be in traditional public schools. So there’s a lot of kids with disabilities like autism, Asperger’s seen kids with tics. I know kids with ticks, Kid kids with like seizure disorders, just things where they need special accommodations that they can’t get it normal schools, so or normal schools, but it’s kind of everybody there has like, their own things that they have to deal with. So there’s like no judgment there at all.
Jamie: 12:44
Yeah, I was gonna ask you, so how do the kids treat you at school? But yeah, you’re just one of you.
Avery: 12:45
I’m just one of them. You know, it’s kind of the same there, we all have our little differences, like we are different than other schools, because other schools, they have the curriculum for one type of student. And if you don’t follow that curriculum, then you’re going to fall behind, but our school has curriculums for different types of learning and different, like, passions and stuff. And they work with your passions to get credit, which is really cool. Like, I get a lot of credit for stuff when I do art.
Jamie: 13:20
Nice, that’s really good. Because I mean, that’s, that’s your your passion. And that’s what you need to get experience in. So that’s, it’s really good that you’re able to start, you know, working on that at a young age. That’s really good. That’s awesome.
Avery: 13:37
Yeah.
Jamie: 13:38
So how about outside of school? Who do you go to you send your mom’s your manager, of course.
Avery: 13:45
Um, my family is super, super supportive. Honestly, since the diagnosis, we bought gotten so much better at communicating with one another, like, even without, like, besides me, they’ve gotten better at communicating their issues with one another, because we had to learn to adapt to a big change. But they’ve been so supportive. I feel so lucky. Like, I don’t know how lucky I got with like, this amazing supportive family that like will do anything for me. And my friends, too. I’ve really supportive friends who I can talk to they don’t have Tourette so they don’t really understand but they’re willing to listen to me and they’re willing to be like, Oh, that sucks. I’m sorry. You feel that way. You want to go like, do something to make you feel better, you know? But my parents are always asking you like, Hey, you feel okay. How are you feeling today? Is there anything I can do for you? Which is really great. But it took some time to learn but I think we’re pretty much a lot closer since the diagnosis. So I feel like I have a pretty good support system everywhere I look which I feel lucky for.
Jamie: 14:43
That’s really good. So you can see there’s there’s been some some good things that have come out of, of your diagnosis. That’s
Avery: 15:00
Definitely. Yeah, I definitely see a lot of like, changes have gone around, especially like with me, I feel like I’m a lot better at speaking like about things that I care about, like public speaking and stuff. My teachers have told me that they’ve seen my public speaking skills get so much better from when I was in freshman year. I once cried on stage because I was so nervous and I was saying my life and I started solving all of a sudden, and I had to leave. And I was like, like, that’s how I am. I hated public speaking, it was the worst. I could never see myself public speaking. And then I went to my neurologist, and he diagnosed me and he thought that I would be a good youth ambassador, he, he kind of offered like, Hey, you should be a youth ambassador for the Tourette Association of America. And I asked him what it was. And he said, Oh, it’s just like speaking about Tourette’s publicly. And I immediately shut it down. I said, No, thank you. I didn’t think I was ever going to do that. And then I went to Tourette camp. And I met so many people with Tourette syndrome. And I think it also really, like helped me accept myself a little bit more. And I think once that I had accepted my like new life, basically, it helped me want to advocate and it made me want to teach people because I knew that there was a lot of stigma stigmatization around Tourette syndrome, a lot of like, bad blood with people with Tourette Syndrome, like it’s not well known. And there’s a lot of like, just stigmatization about it. And that made me feel motivated to present and speak about it, even if I didn’t fully feel comfortable with it. But as I’ve gotten to do it more, it’s gotten a lot easier. So I definitely think that a lot of good things have come from my diagnosis.
Jamie: 16:39
Yeah, see, so you can also have a career as you know, going around the country and teaching others about Tourette Syndrome. See, you already have to You’re not even out of high school. Now, I already have two careers lined up for you
Avery 17:03
Yes, I try to just get ahead in life.
Jamie: 17:09
That’s great. I mean, I can, you know, for just your self esteem to be able to talk in public because that is one of the most difficult things to do. You know, I mean, it’s, I think most people, especially early on, you just, it’s really difficult. Yeah. But also, I think what helps is, I like kind of got diagnosed at a really early age, I got diagnosed freshman year. And then I’ve had Tourette’s my entire life, we just didn’t know. So we kind of knew who I was aside from the Tourette’s. So with that kind of helped me, like I had already, like, kind of figured myself out before I got diagnosed. And so I knew who I was, aside from the disability. And so that really, I think it helped me accept it a little bit more. Because I was already I had already shaped into a pretty positive person. So I feel like if I had gotten diagnosed, and it had been as bad as it was set from a young age, I wouldn’t be the person that I am today. So I think I really lucked out there.
Jamie: 18:13
Yeah. Yeah.
Avery: 18:14
But it also means that I’ve been suppressing my entire life. So I have to tell myself to not suppress and I have to kind of force myself to take when I’m feeling comfortable.
Jamie: 18:23
Interesting. So So you were you think you’ve just been suppressing and it wasn’t just as you as you’ve gotten older, and like maybe you have more stressors or things like that it was just,
Avery: 18:26
It’s both. I know, I’ve been suppressing since I was young, because I came to this realization after I got diagnosed, and I realized what it felt like, I’ve always I know that I’ve always felt the urges and I thought, everyone had those urges. And I thought everybody suppressed them. So that’s what I did. And I thought that was normal. So I did that up until I was like, 14. And then I realized that it wasn’t a thing that everybody has to deal with. And then the big stressor that kind of brought on the diagnosis was my brother leaving to boot camp. And I had this neck tick that like, was going on all day. And it felt a lot like it kind of felt similar, but not exactly the same as the tics that I had when I was younger, because I was diagnosed with the transient motor tics. And I was young because I had minor facial tics, but not enough to get a Tourette diagnosis.
Avery: 19:28
But then we realized after I got diagnosed, and we started figuring Tourette’s out and figuring out like, what’s going on with me, we started noticing and connecting things to when I was younger, like, we have this family photo that I’ve always hated. Because I was doing something weird. I was doing this with my hand, and I was holding my dog and I realized that that was a tech so I’m not embarrassed of the photo anymore. Like I used to be like, Why was I doing that? That’s so weird. I was such a weird kid. And now I realize okay, I don’t feel weird about it anymore. But like I was connect to like, I would say, letters under my breath. I’m like, and like, you know, like, kind of under my breath. My mom would tell me that she would hear me doing these things. She’d be like, whatever weird kid, you know. Or I would repeat things under my breath that I would hear or say. Like, just these little tics that I thought were normal. My mom thought they were normal because my brother had them, but he grew out of them. That’s the difference. I didn’t.
Jamie: 20:25
Oh, interesting.
Avery: 20:30
But he also has like ADD and anxiety and stuff. So we both got different ends of the same stick, I think,
Jamie: 20:38
Right? So you don’t have anxiety?
Avery: 20:42
Oh, I do. Yeah.
Jamie: 20:44
You do just not as not as bad as ADHD and and anxiety.
Avery: 20:46
I do have ADHD, anxiety. I have ADHD, anxiety, depression, Tourette syndrome, and OCD and anger issues.
Avery: 20:56
Yeah, the anger issues are kind of new. I’ve never been an angry person. But now I am kind of an angry person, I kind of get angry very easily, and things set me off easily. But they’re all OCD related. So that’s kinda
Jamie: 21:10
So if you if your pattern gets met met, like messed up or your schedule or something that that will, that will be your trigger.
Avery: 21:20
Yeah, I have a big things with expectations and schedules. Like, if I set an expectation, even if it’s the smallest expectation, that means nothing in it gets doesn’t get mad that I just get so angry for no reason. And then I get angry at myself for being angry because I don’t want to be angry, and there’s no reason for me to be mad. But then it just kind of spiraled from there.
Avery: 21:42
And that’s the OCD. And that like, I’m just like, always hyper aware of like my surroundings. And that’s the OCD and then I get angry. If I see something in a certain place, and I don’t want it there. Yeah.
Avery: 21:54
Just irrational things, irrational anger.
Jamie: 21:59
And then so how do you deal with that?
Avery: 22:02
I’m actually working with a therapist. I just went to a therapy appointment yesterday for a new therapist who’s going to help me with that. So we’re figuring that out right now.
Jamie: 22:13
Okay. All right. Well, that’s good. That’s good. You gonna have some help with that
Avery: 22:17
as the next thing.
Jamie: 22:20
So your mom said that you’re a big animal lover too. Is that right?
Avery: 22:25
Yes. I have a dog. Who kind of dog and a hamster. Yes.
Avery 22:30
He’s old.
Jamie: 22:32
Your that the dog is older than the hamsters.
Avery: 22:37
She’s almost two.
Jamie: 22:40
Is that old for a hamster?
Avery: 22:42
Yeah, about hamsters, like super old is like three years old. Okay. Okay, so she’s pretty old. But my dog, Toby. He’s really sweet. He’s a big dog. We got him when I was nine. So we got him before I was diagnosed. But he is so good at helping me through my ticket tax and like whenever I’m having a hard time, he knows like he can sense like, if I’m sitting in a recliner chair, and he’s sitting on the opposite end of the couch, if I start like ticking or feeling comfortable, I feel like he can sense it. And he moves to the other side of the couch closer to me. And he just, he’s so sweet. And then sometimes if I’m like, having a really bad tic attack, and I’m like, you know, spasming and like, like, bending my body, he’ll lay on me and he’ll put pressure on me and he’ll lick my face and distract me. He’s a really good boy. He knows.
Jamie: 23:33
Oh, that’s so sweet. What kind of dog is he?
Avery: 23:35
He’s a black lab mix. We think he’s mixed with a pitbull because he’s kind of short. But he’s also really long like a black lab, but he has like Pitbull legs, but he’s boy ever and we love him so much.
Jamie: 23:40
That’s a great mix for service dogs.
Avery: 23:51
Labradors. I love them.
Jamie: 23:53
They’re both really smart and very loyal.
Avery: 23:55
Pits used to be nanny dogs, right? It’s so much sweet in their big heads. Yeah. The big head like a pitbull, too. That’s yeah.
Jamie: 24:08
Oh, I could go on and on. We better stop. Oh, yeah, no.
Jamie: 24:12
Totally off subject all day.
Jamie: 24:16
Another time, we’ll have to talk about the time.
Avery: 24:20
Oh, Dog podcast. Oh, yeah. There we go. That next one? Yeah. I like it. Yes.
Jamie: 24:28
Okay, so, um, let’s see.
Jamie: 24:33
We’ve gone over, I think most of the questions. So who are your biggest role models?
Avery: 24:45
Oh, that’s a really good question.
Avery: 24:46
I feel like one of my biggest role models right now. Probably my teacher John. I think I don’t know he. He really just..He doesn’t get Tourette’s, but I feel like he understands me like he doesn’t. He’s not like a Tourette expert. But like, I feel like he definitely understands me. And he’s just so cool and laid back. And he knows how to like. He’s not strict, but he knows how to get people to take order from him, you know. And like, all the students love him. He’s just so laid back. He’s so cool. He plays like every instrument known to man, he makes stuff. He’s a huge artist, so talented. I want to be like him. When I’m older. I want to be able to like, you know, because he’s always he’s always doing stuff. He’s always making things. He’s always fixing things. He’s always like creating, and I just love that I want to do that when I’m older. I want to do whatever it was. And he teaches while he does it, and I really like that. Oh, wow, that sounds amazing. But also, I think, another role model model or my parents. They’re totally complete opposites. But they’re opposites in which they complement each other. So like, my dad’s super chill, laid back, he doesn’t worry about anything. And my mom’s super uptight phrase, but everything’s super anxious. But like, he calms her down, but she also gets a movie when he needs to do stuff, because he’ll get forgetful, who like, who’d like oh, we can do it another day? Oh, student another day? Oh, don’t worry about it. And my mom’s like, What are you talking about? That’s crazy.
Avery: 26:20
And so they kind of even each other out, and I and I look up to the relationship, I think I think they have such an amazing relationship. They’ve been through like a lot together. And they’ve just stuck through it. Like they could have given up so many times, but they kept going to therapy, because they just loved each other so much. And now they their relationship was so strong. And I just really look up to them and their bond, I think,
Jamie: 26:44
Oh, that’s awesome. That’s really nice.
Avery: 26:47
I want to have what they have when I’m older.
Jamie: 26:48
Yeah, nice. Well, hopefully, I’m gonna I’m gonna think good thoughts for you. That that that will happen.
Avery: 26:58
Yeah. Thank you.
Jamie: 26:59
Very good.
Jamie: 27:00
So do you have any advice for others who may be struggling with having Tourette’s or some other diagnosis that that limits some of their abilities?
Avery: 27:15
Yeah. Just like life altering abilities. i My advice is just really like, be upfront and be honest about like, what’s going on with you and be honest about with people who are close to you. And honestly, just trying to find people who has like a good support system. So that you always have someone to rely on because we’re going through something like this alone is. So just, I don’t want anyone to go through this alone. And I feel like having a really good support system and letting your support system know what you need. And being really upfront and honest about how you’re feeling really helps. That’s what helped me I had to learn that like, like, it’s been really hard for me to be upfront with what I need, and tell people what I need, because I don’t want to be like a burden or anything. But I have to get that thought out of my head. I living with this. It’s not my fault. It’s not anyone’s fault. And it’s just how life is. And if people aren’t going to honor that, then they’re not for you. And they’re not your support system. And you got to find people who support you for who you are.
Jamie: 28:19
That’s very true. That’s good advice. So when you meet somebody new, like how soon into like a conversation, when you meet somebody new, they’re like, Oh, do you? Are you like, by the way I have Tourette’s? So if I start ticking, or do you just like, Wait till something happens? How does that go? When you meet like a stranger?
Avery: 28:41
To kind of wait until something happens? Usually, um, when I meet a stranger, like, I usually do, like random like, takes, like, when I was young, I would like blink a lot. And people be like, Why are you blinking? Like, oh, it’s a tick, and you’re like, okay, but like it, I probably wait until I tick.
Avery: 28:57
I’ve ever like when I went to school, I was wondering how I would do that. But then in class, my teacher John said, Alright, go around the class and say one thing about yourself that you want people to know, I was like, Well, I guess it’s my chance to tell people I guess. So maybe wait until the opportunity arises? I don’t know.
Avery: 29:15
That’s my personal like, my personal opinion. But also if I’m around my friends, they will tell everybody right away. Oh, really? Oh, by the way, don’t be mean. They don’t need to know that they’re fine.
Jamie: 29:27
I would think that would be a little embarrassing. It’s like wait, we don’t you know, I might not have anything that happens while we’re interacting with this person. Why do they need to know?
Avery: 29:37
But also I know it’s in such like they’re it’s like out of the goodness of their hearts because they learned to protect me and they want and they also all my friends told me that after I got diagnosed and after I told them about it. They started advocating to their friends about it. And they started advocating to other people not teaching people and they love and they’re like, I get so excited when I get to talk about Tourette’s because I get to like reference you and I get to talk from experience and I’m like, Oh my god. That makes me so happy.
Jamie: 30:03
Oh my god, it gives me chills just to hear
Avery: 30:05
My older brother, he was in nursing school. And he was they were doing this presentation on a certain topic. And he chose Tourette’s. And he literally just spoke the entire presentation off the top of his head. And he said, it went so well, because I just referenced you the whole time. And I just talked about our experiences together. And it makes me so happy that I can help people spread awareness because I realized that it’s not just coming from me, it’s coming from the people that I talked to you also.
Jamie: 30:34
Right? Yeah. See how how positively you have affected? Many people. Yeah, that’s, that’s really amazing. That’s gonna be a really great feeling
Avery: 30:44
Yeah, it makes me really happy that my friends are the type of people who want to talk about something that they want to help me with. Yeah. And they’re always like, Oh, my God, it makes me so sad how Tourette’s is so stigmatized and how there’s so many like, like, misinformation about it. And I just want to tell people that they’re wrong and people like, and they’ll totally just go off on people who make like, Tourette jokes like, oh, they probably have Tourette’s. Like when they customed. Like, that’s not funny. That’s not what Tourette’s is. And they will go off on them. And they tell me, they’re like, I’m so mad. You’re to talk to them. And I’m like, Oh, my gosh, you guys. Great.
Jamie: 31:19
That is so cool. That is so cool.
Jamie: 31:24
All right. So is there is there anything else that you’d like to share with with the community that you want people to know?
Avery: 31:35
Well, I get all my information from Tourette association.org. Okay. So if anybody wants to see anything, or read anything that I didn’t mention, which there’s a lot of stuff that I couldn’t mention, I definitely recommend going to their website. All right. All right. Sounds good.
Jamie: 31:59
Well, I really appreciate you taking the time to talk with me today.
Avery: 32:03
I appreciate you having us. It’s very fun. I’m really glad I got
Jamie: 32:05
I’ve learned a lot I thought I knew something about Tourette Syndrome before I get started, but now I know quite a bit more. So thank you.
Avery: 32:15
Great. That’s happy and that makes me happy.
Jamie: 32:16
Good. I’m so glad.
Jamie: 32:18
All right.
Mother Shares Her Journey Raising a Daughter with Tourette Syndrome
Amy, a mother of a teenage with Tourette Syndrome, discusses what it is like raising a child with this disorder. Amy describes the symptoms of Tourette Syndrome, her daughters’ symptoms and how they progressed and shifts over time.
Host Speaker 0:39
Thank you for joining us for another episode of I am Able. The goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities. TES and IRL is providing this podcast and as a public service, but it is neither a legal interpretation nor a statement of TES and IRL policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by TES and IRL. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by TES and IRL employees are those of the employees and do not necessarily reflect the view of TES and IRL or any of its officials. If you have any questions about this disclaimer, please contact TES at https://www.tesidea.com/contact-us/or IRL at https://www.redesignlearning.org/contact/.
Jamie: 1:47
Hello everyone and welcome I am Jamie Lord Tovar, and today I have with me Amy, how are you today, Amy?
Aimee: 1:56
I’m good.
Jamie: 1:57
Glad to hear it. I’m good. Thanks. So Amy, today we are going to talk about Tourette Syndrome. So can you tell me what your connection is to Tourette Syndrome?
Aimee: 2:11
Sure, um, my daughter Avery, who is currently 17 and a senior in high school was diagnosed almost three years ago. It’ll be three years in, in about a month. And right after our diagnosis, and we kind of expected we expected the diagnosis. She went to Dr. Google. And she told me she thought she had Tourette syndrome. And then when she started high school her freshman year, she moved from a very small Montessori School with 16/8 graders to a 500 student freshman class at a public high school. And she was doing fine adjusting, but her brother left to go to the Navy. The day he left. She came home with a violent head tic that had given her headache and it was, you know, a constant throwing back to the head for hours by the time she had gotten home. And so that really prompted the phone call to her pediatrician. And in my message I just said I feel really strongly we’re going to get a Tourette Syndrome diagnosis and would like to be referred to a neurologist but I understand if we have to see you first. And she knew Avery she knew me. She trusted us and we were inside of a neurologist office within a week, which was amazing. Wow. So and then by the weekend, the Northern California Hawaii Tourette Association chapter group was meeting in person at a pizza parlor. So we popped in there. And kind of the rest is history. We got very involved with the Tourette Association of America. And I became trained to do educational presentations for schools and educators. And I ended up joining their board because I don’t know how to do anything but be 100%. So and then eventually Avery became a trained youth ambassador for the Tourette Association of America as well.
Jamie: 4:33
Oh wow. I can’t wait to talk with her about all about that. That sounds really exciting. So she had before the head tick backwards there. There had not been any other signs prior to her
Aimee: 4:49
There had been even as young as five I remember her having, you know, no scrunches. There was a sniffing kind of a Almost a nose clearing sound that she would make. We actually when we got her tonsils out, we had them remove her adenoids because of that sound that she was making. And it turns out that was a vocal tic. So vocal tics are anything that makes noise kind of with your face is the best way to describe it. It’s not necessarily an utterance of a word, which I did not know. Plus, she had the nose scrunching, she had some eyebrow lifting. She had kind of she would stretch her upper lip. And it happens whenever she was excited or stressed out. And you know, we would kind of joke like, oh, look, paper is really excited or faces kind of going a mile a minute. And as she got a little older, you know, she was seen at UC Davis, which is a wonderful teaching college here in Sacramento. She was seen at the MIND Institute for ADHD. And we talked a little bit about the facial tics, and they said, Oh, yeah, that’s a transient tic disorder. And I went, Okay. And it didn’t really escalate, except when she was excited or stressed out, and then it would go away. And then when puberty hit, we started seeing some more tics. And she started to be more bothered by them. And she would just tell people, oh, it’s a tic, I just, I can’t help it. And that was the end of it. And then with some, you know, girl drama, things started to escalate. And that’s when she consulted Dr. Google. And that was in the spring before her door diagnosis. And I said, Well, you know, do you want medication? Do you think you need medication to control it? And she said, No. I said, Okay, we’ll mention it the next time we see your doctor. And we hadn’t seen her pediatrician until things had escalated to that. That really violent head tick. Yeah.
Jamie: 7:04
Oh, yeah. I think that would be because so. So Tourette’s Syndrome can be it can be a physical vocal. So it’s all just its tics. Is that right? Can Can you kind of explain to us what exactly what Tourette’s Syndrome is?
Aimee: 7:21
Sure. So it’s a neurological condition. Sometimes it’s confused for a psychiatric or psychological issue. And it does kind of commingle with some of that stuff. So there’s, there’s Tourette syndrome. And the there’s this really amazing graphic that the Tourette’s Association of America put out. It’s a picture of an iceberg. And it shows Tourette syndrome and vocal and motor tics on the top. And then below is ADHD, executive functioning, autism. OCD, odd sensory processing issues, depression, anxiety, rage, there’s a lot of things that can come with it. And some people call them comorbidity or CO occurring conditions. So you might see the tics, but inside there’s a lot more happening. In her case, she’s got ADHD. She’s got some sensory issues. She has depression and anxiety. She has OCD. And in the past year and a half, we’ve seen a lot of rage, which it’s interesting because her Tourette’s was so mild for so many years. It we we were very fortunate in that we were able to see that her Tourette’s is not her, you know what I mean? A lot of kids are very Tikki from a very young age, especially the ones seeking help from the Tourette Association. I mean, we don’t go you don’t go to a support group. If you don’t really if you’re like, ah, you know, they just blink. Right. And then there’s also coprolalia and Ko paragraph Yeah, and dysgraphia copro. copro is Greek for PCs. So it’s basically poop mouth and poo pants. So it’s it’s inappropriate gestures and which is actually like your typical Tourette Syndrome. We’ve had people think of the swearing but only 10 to 15% have the swearing. Unfortunately, my daughter’s one of the 10 to 15%. She also has echolalia. So if something piques her Tourette’s in a certain way to her ear, she can get kind of fixated on repetition of the word. Okay. Yeah, it’s it’s an incredibly complex disorder, especially for the ones that have more severe Symptoms, which is definitely her, you know, some of her doctors are more than three hours away. Oh, wow. Yeah. Yeah, we go down to Palo Alto to UCSF occasionally because we don’t have specialists that are really great at the more severe Tourette Syndrome. Yeah, yeah. Her’s this definitely more in the life altering realm, I guess.
Jamie: 10:27
Yeah. Okay. So can you kind of just describe what a typical day is like, living with Adrian, and her Tourette Syndrome?
Aimee: 10:39
Sure. And it’s it’s changed a lot and it changes. Over time, it kind of shifts. Typically. You know, she’s 17. And she used to be really independent, got herself up, got herself ready. But now with the TMS we really, so my husband or I work from home every day. She’s not home alone. Because she has had some tics that are pretty alarming. She, she had a fainting tic at one point where she would just kind of almost pass out, she had only happened a few times, but we just never know it’ll return. She’s had paralysis ticks, which we kind of described as her just going boneless. You know, so she can hit her head. She’s had some obsessive tics where she bumps her head, and she has to hit it so many number of times or until it feels right. So either myself or my husband works from home every day. So whoever’s at home wakes her. She goes to kind of an alternative high school. We pulled her out pretty much immediately after her diagnosis. So there’s only maybe 90 students in the whole school. It’s more project based learning. She has an advisor who she is very connected to who gets her. Yeah, he when he sees her in the hallway, he’ll say, Hey, you haven’t called me in mother effer in a while.
Aimee: 12:15
Now, I’m sorry. And he’s like, and then another student will say, Well, can I call you back? One of the benefits is the right,
Aimee: 12:28
right? No, so many, and her community is so amazing. So most days, she does not go to school, she works from home. I just depends on how she’s feeling how Tikki she is. She also drives which we weren’t sure if she would be able to drive but in her particular case, she focuses a lot on the driving and when typically those with Tourette’s that are when they’re really engaged in something that gives them a lot of joy. Sometimes it’s being athletic, sometimes it’s performing. doing music, like Billy Eilish has Tourette Syndrome. Oh, yeah. And she, she doesn’t take when she sings or performs because she’s very focused and engaged and, you know, martial arts and things like that. So driving, a lot of people with Tourette’s find that they’re okay to drive. And if they are feeling ticky, they can pull over. Actually, there was a really great show called Raising Tourette’s. And I want to say it was like a six or eight episode series that followed some parents with kids with Tourette and it’s one of the girls who was actually getting her permit and her license. So it was one of those things that was like, Oh, good, you know, gave us a little hope that that she would be able to drive and she does. So when she goes to drive, she just checks into make sure she’s okay to drive and, and then she stays as long as she can, knowing that she has a 10 to 15 minute drive home kind of shifts her day around how she’s feeling. Yeah.
Jamie: 14:11
So she’s able to, to pretty much stay focused for that 15 minutes because I was thinking, you know, driving is really stressful. I would think that that would be something that would trigger you but
Aimee: 14:22
right um, she does get really mad at other drivers, but I don’t think that’s treads I think that’s the California around people that drive horribly. But yeah, she um, she actually she does better as a driver than a passenger. As a passenger her back her back in her feet seem to be the most impacted right now. So she has a hard time sitting upright for long periods. And she has a hard time like walking long distances. Because her feet get really tricky and then she gets kind of stomped be so you Usually we put ourselves in a position to, you know, be in a position where we can get her out of wherever we are safely. My husband’s pretty big and strong so he can carry her. I’ve given her some piggyback rides, in and out of doctors offices and such. So, but you know, she’s 17, she doesn’t want to look like she needs her mommy to carry her around. And she’s bigger than me. She’s taller than me. So yeah, so that’s pretty much a typical school day. So she goes, she’s gearing up to go tomorrow morning. Because they have something called advisory. It’s kind of like homeroom where they all get together as a group and collaborate. And she was asked to do a specific project. So her advisor said, Hey, you haven’t done this yet? Is it possible you’ll be able to do it Friday morning? Is that a better time for you? So she’s kind of geared up for that.
Jamie: 15:56
Oh, nice. Okay.
Aimee: 15:59
So she does better when she can kind of plan ahead. Like, I know, I need x number, you know, this weekend, she wants to go to a an escape room with her friends. And we also want to go see a movie. And she said, Well, I think I don’t want to do them on the same day. Because I think it’ll be too stressful, because one of the things she’s really great at is suppressing. Most people don’t suppress as well as she does, she can hold her tics in for a period of time. But what happens is they build up, and then they kind of explode later. And sometimes it’s much worse, they they have to come out, they just do. It’s like a rotten tooth, it has to come out, it can either come out quickly and easily at the dentist, or we can wait for it to rot and fall out of your head. And so suppression is kind of waiting for it to rot and fall out of your head. Hmm.
Jamie: 16:53
I’ve heard it was it’s kind of painful for the person to suppress.
Aimee: 16:58
It is it’s like um. When we do the educational trainings, we do it a couple different ways. One, we might do a staring contest, if it’s young children, and and then you have to keep reminding them through the whole time. Don’t blink, don’t blink, Don’t blink. So all they can focus on is not blinking. And then you still have to blink. with adults, we asked them to write down the Pledge of Allegiance. But every time you clap your hands, you have to stop writing and you have to tap your pinky on the table. And then to help simulate kind of the OCD and dysgraphia we let them know that every third word has to be crossed out and rewritten. So while you’re writing the Pledge of Allegiance, I’m clapping pretty consistently. And then you’re having to count your words and cross them out. And then right before I say start, I say okay, you have 90 seconds neatness counts go. Oh, and then it’s near the end, especially if it’s a roomful of educators, I like to say now, don’t forget, I didn’t write it on the board. So you’ll have to remember, for math tonight, we want you to do page 46. All the evens to page 52. All the odds, but skip number 28 and 29. Yeah, and at the end, there’s not a single person that can finish the Pledge of Allegiance. So it’s trying to simulate how much students are holding in and how hard it is just to get through a quiet hour in a classroom where you’re trying not to disrupt other people. You know, they’re not trying. She’s not trying to disrupt other people. But she has a right to an education like anyone else. Yeah. Yeah.
Jamie: 18:57
Wow. That sounds very challenging. Very so. So what would you say is probably the biggest challenge with with raising Avery because with her Tourette’s?
Aimee: 19:16
I guess, personally, for me, my challenge has been I’m a big planner, I’m a very busy person. And having a child with a neurological condition means I can’t plan. I mean, I can, but I have to be able to kind of fly by the seat of my pants in a moment’s notice. We went on a very large trip with her Girl Scouts this year. And we made sure that they that she had a private space to decompress when needed. We let her know all the chaperones agreed that if she couldn’t or didn’t feel comfortable participating, even if it meant that she had to say Stay home, while the rest of the group went and did something one of us would volunteer to stay with her. We were really understanding with her medications and, and it’s, it’s, you know, we’ve I’ve got to be able to be flexible. And I’m not I was not a flexible person prior to this. I, in my day job, I run to Child Development Centers, and I’m an infant toddler specialist. So I train other teachers. Oh, wow. So I’m pretty busy. And my life is very planned out. You know, I know I want to do this. I know we want to do this trip by now we want to go here. But now, at any given point, we could be in the middle of a movie, and she could turn to me and say, We got to go. And I’m like, Okay, we’re done. And, you know, we love going to Disneyland. So we have to plan and I have to be okay with not going 1000 miles an hour to get every penny’s worth out of those ridiculous prices need to get right. I have to be okay, that we might go for three hours. And that’s it. Despite Park accommodations, they’re very accommodating. But, but yeah, I mean, sometimes three hours is our limit, or we have to take days off in between and pay for another hotel night. So I’ve just had to be really flexible, which, honestly, you know, we we try and find the blessings in the things that we can’t control. I call it finding the blessings in the bullshit. But there’s, you know, we got to find the gifts in what we’ve been given. And one of the bigger gifts has been, I have been forced to be more flexible. And it’s better for our whole family. I’ve been forced to take a backseat to her advocacy, because she she’s 17. She wants to live on her own someday she wants to go to college. And she’s not going to be able to do those things. If I’m by her side speaking for her. You know, there’s times that it’s appropriate. If, you know, if we were in a movie theater or a restaurant and somebody confronted her, my husband and I, we have a plan. My husband takes her and I go okay, so I’m willing to die on this mountain, are you? I have ADA backing me. So. So you know, there are times in which I’ll do the advocating, but for the most part, I really tried to take a seat and step back, so that she can practice those skills. She needs them. And that’s good for all of us.
Jamie: 22:48
Yeah, that seems really hard. That would be as a parent, I know. It’s gonna be like, that’s your biggest challenge.
Aimee: 22:56
Right? Right. It is, you know that my instinct. I’m like, yeah.
Jamie: 23:06
Well, it sounds like that she’s had, you know, a lot of success, despite her challenges, so what at this point? What what do you feel like is Avery’s the biggest success?
Aimee: 23:21
I think finding a school community that she’s comfortable with. And every time she advocates for herself or others with Tourette Syndrome, she gains more confidence. Every whenever she’s talking about it, whenever she’s very vocal and very involved. She feels better about where she’s at. So that’s been a huge success. She’s an artist, so she spends a lot of time doing art. Yeah. And we’ve also found, we have a really great team. She’s got a few different therapists, and a psychiatrist and a couple neurologists. And they’re all amazing. They’ve all been very understanding we have found for her, that the only thing so there’s ticks and then there’s tick attacks, and tic attacks are kind of like an explosion all at once. In her, they typically affect her back and legs the most. So she has to be sitting or laying down. And they’re exhausting. So she sleeps a lot when she’s more Tikki. And we have found that instead of taking her to the ER for a shot to knock her out. The only other thing that works is medical marijuana, which has, I’m sure tons of controversy and I just don’t care anymore. Because for the past two years, that’s how we’ve controlled a lot of her tics. She can can use it in such a way that she can still be fairly lucid. She wouldn’t drive in those instance. But she can still do math tests online, she can still collaborate and do her art. Yeah. So, so she, she controls it in such a way that she can get things done while being medicated. But it also means it limits where we can go, you know, we have to be able to take her medicine with her. And regardless of whether it’s medical or not, and we have, we have all the blessings of the State of California to use it, but we can’t fly with it. She can’t use it in public spaces, things like that. She can’t use it on school campus. So you know, there’s some downsides that come with it. But there there isn’t a medication that does what that does, really isn’t. There are no medications, specifically marketed for Tourette Syndrome. Usually it’s ADHD meds, like guanfacine. Things like Tramadol, things like SSRIs. And anti psychotics tend to help with tics, but they don’t always and they can come with some obviously, unpleasant side effects. So we ran the gamut through several medications and several combinations, before we even considered medical marijuana. And, you know, it’s really hard to think, at the time she was 15, like, I’m going to teach my daughter how to get high. Like, it doesn’t mean that’ll look great on paper. Right? Right. But, um, but I’ve dealt with some pain issues around autoimmune issues and myself. So I also know that it can have very helpful effects for long term problems. And, you know, the, the anecdotal evidence is clear that it can help a lot of people in a lot of ways. So that’s been another area that this kisi that we’re starting to get into a little bit as well.
Jamie: 26:56
Oh, interesting. Interesting. Now, so in addition to, to medication, can you do like stress relieving, like, yeah, patient and yoga and things like that. Those things also help,
Aimee: 27:12
meditations really great. Um, and I, I have some experience with mindfulness and meditation, and even just meditating everyday for five minutes can re-wire your brain. So that’s been helpful. We also did a long series of hypnosis. With an hypnotherapist, a pediatric hypnotherapist in the Bay Area, actually specializes in Tourette’s Syndrome. And so some of his techniques have been really helpful. There’s see bits, CBI T which is different from CBT therapy, c bit kind of teaches you a competing response. So if you have the TIC to throw your arm out, instead, you might bring your arm in and pat your leg every time you get the urge. But it also focuses on teaching you when the sensation of the need to tick is coming on. Her tics seem to kind of bounce around a lot and she has a lot of vocal like right now. She’s mewing mewing a lot. And we just completely ignored it’s like we don’t even hear it also, because I’m around her a lot. Her tics have a different voice than she does. And we’ve actually renamed her Tourette’s Jared. And Jared is a misogynistic 15 year old boy. mouth and a wicked sense of humor. He objectifies women. So some of her tics are Yeah. Pretty, pretty rude to women. discussion about boobs in our house. And then on top of it, Avery identifies as a lesbian. So between her and my son and my husband, I’m Wow, you must feel oh my gosh, Mike is not a good looking man and you know, whatever. And then Jared pipes in with something about boobies and I’m so for the most part, we ignore her tics completely, but occasionally we get some hilarious outbursts. She’ll hear something and it’s almost like the subconscious hears it. She was up late one night, couldn’t sleep and saw a clip from some comedy movie. And that same clip came out the next day in the psychiatrist waiting room, and it was like it Two minute dialogue monologue. Okay. And it was hilarious. And I’m looking at her because I didn’t recognize the reference. And she’s just kind of doing her thing. It had to hand gestures and everything. And then at the end, the receptionist flings open the the window from her little medical office and goes, oh my god, I love that movie. And I’m like, Avery’s going, I don’t know. And I’m 22 Jump Street. And she had the whole it was the slam poetry thing. Fair enough, seen it but I have actual advice. So when when Kyla Hills up there and he’s like, runaway bride, I mean, she’s doing it like, same comedic timing, same tonal quality. It was. That’s funny. She didn’t know what it was from because she just and she goes, Oh, I think I saw it on YouTube last night. And it was funny. So I watched it a second time while Jared memorized it. Like to perfection. Yeah. So it’s really, from a brain research standpoint, the whole thing is kind of fascinating. Yes. I mean, if it wasn’t so life affecting it would be a lot cooler. But it’s very interesting because they just don’t know exactly how people end up with Tourette Syndrome. They know it’s genetic, but, but it’s Polly genic. They can’t quite pinpoint which exact teens are doing it. But basically the basal ganglia is supposed to stop all of these strange urges that apparently we all have to say or do movements. And someone with Tourette’s Syndrome, their basal ganglia just kind of lets things through here and there.
Jamie: 31:56
So do you have other people in your family then that also have been diagnosed or is she
Aimee: 32:02
I don’t know anyone with a Tourette diagnosis, but I have a cousin that has a kind of a no scrunch that she’s always done. Her sister is diagnosed with OCD. I see some mild OCD, OCD traits in myself. I definitely have ADHD. My son has ADHD. So yeah, there’s definitely some family history of that below the the iceberg stuff. depression and anxiety. There’s a lot of that on my on both my mom and my dad’s side. So yeah, it’s, but we don’t know anyone with full blown Tourette. Okay, yeah.
Jamie: 32:42
So she gets to be the first one. Yeah. The Pioneer.
Aimee: 32:52
Right.
Jamie: 32:56
So, so, what do you think the future looks like for you and your family, and,
Aimee: 33:03
you know, um, I’m going to refer back to my previous statement on being flexible, and that’s where we’re at. Um, you know, my husband and I have talked to him, and we don’t really talk with her too much about it. But, um, we’re prepared for whatever the future holds for her, we want her to be as independent as she’s capable of being while still keeping her body safe, there’s a chance her tics will diminish. But oftentimes, those below the iceberg things become more pronounced. So it could mean that OCD will take more of a precedence or more depression or more anxiety, we just don’t know. So we’re just kind of prepared for whatever. She’s she’s very artistic and very driven in that regard. She she wants to have a tiny home and way too many animals. So we’re hoping that that’s a reality for her. And if not, we’ll we’ll figure out our situation so that she can be as independent as as she wants to be within the parameters.
Jamie: 34:17
Okay, that that sounds good. Sounds like you are very open to the possibilities. But yeah, yeah, yeah.
Aimee: 34:28
Yeah, the one thing we’ve been told is to not, not focus on it going away in the future that some adults with Tourette Syndrome have said that they were told that by their doctor that it would go away in adulthood. And when it didn’t two became a really big point of depression, right? Like, why is everyone else better and I’m not right. So we’ve we found within the tourette community, that it’s really important to talk to other parents and find out and talk to adults with Ts to see what what possibilities. I mean, there’s there’s so many possibilities out there there. I mean, Billy Eilish is doing great. There’s a teacher. He’s actually now an administrator in Georgia public schools. And he was the feature of a movie called the front of the class. And he was a teacher trying to get a job in Georgia’s public schools out in Atlanta. And he finally found a school that got him and was willing to accept him as a teacher. And he’s moved his way up, and now he’s an administration at the district level. And I think Brad Cohen is his name. And he’s amazing. So there’s more, there’s more awareness every year about Tourette’s.
Jamie: 35:59
That’s great. That is really great. Nice. And, you know, with with art, you can, you know, there’s plenty of artists that have all sorts of issues. And one of those things, if you want to promote yourself, you know, then then you can really have a career, you know, so yeah, yes, that’s great. I can’t wait to talk to Avery about some of her art.
Aimee: 36:27
Oh,my gosh. Well, I mean, I, of course, think everything she does is
Jamie: 36:34
not biased at all. No, not at all. Not at all. So is there anything that you’d like the community to know about, you know, Tourette’s or, you know, ways that they could be more supportive of you and your family?
Aimee: 36:55
Yeah, I would say, um, you know, don’t assume that you know, what’s going on with anyone really, um, prior to Tourette Syndrome, I’ve always tried to be very understanding and, and not assuming that the eight year old having a tantrum is just a brat. I mean, they’re dysregulated, right. So when my 17 year old needs to be carried out or makes noises, even when they look intentional, I’ve been in a situation where it looks like her tics are intentional. And, and other kids with TS when they get together. It ramps way up because they’re kind of catching like a yawn would be okay, we all start yawning pretty soon everybody’s yawning and then someone’s gonna be out. And so you get to Tourette camp, which is a thing. There are a few different Tourette camps throughout the US. And afterwards, they’ve picked up new tics. Oh, no. Yes, yes.
Jamie 37:59
Your friends bet their friends habits to
Aimee: 38:02
Right and sometimes they they drift off. But we all went to a pizza place and there was this chant. That was somebody’s tick, that became everyone else’s tick. And it was this whole dialogue. And it was very, very graphic. And so a group of like six teenagers, we’re all saying it together. So it’s it sounded very intentional. So I guess my my advice or ask the community is don’t assume that you know what’s going on and maybe respond with kindness first.
Jamie: 38:41
Like that advice? Yeah.
Aimee: 38:43
Right. It works for almost everything. Right. Right. Yes. On with Zoom. People are not trying to make your day worse. And it’s probably not about them. Right.
Jamie: 38:58
Right. But yes, I agree. I like that advice wholeheartedly. Yes. All right. Well, I think we’ve covered all of the questions that I had for you. Is there anything else that you’d like to add?
Aimee: 39:13
I think that’s it. Yeah. I, I mean, the Tourette Association of America has been a giant saving grace. I could not recommend the resources enough. They’ve been amazing. Yeah. And that’s, that’s why I volunteer for them. Because it really helped us navigate and it helped us feel like we weren’t alone. It can be very lonely with a child with any sort of special need or different ability. And it really helps to find our people.
Jamie: 39:46
That’s great. That’s so great. Yeah, I mean, we all need support. It’s so glad that you were able to find such a great resource and that you’re able to give back to it as well. That’s really nice. All right
Occupational Therapist Who Works in NICU with Premature Babies
In this podcast, Dawn, an Occupational Therapist, discusses her experiences working in the Neonatal Intensive Care Unit (NICU). The NICU is a specialty area of the hospital that specifically cares for newborn babies that have medical complications. These complications can be born prematurely, experienced a traumatic birth, heart complications, etc.
Host Speaker 0:35
Thank you for joining us for another episode of I am Able. The goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities.
Jamie: 0:47
Good morning, everyone. I am Jamie Lord Tovar. And today I’m going to be talking with Dawn, we’re going to be talking about in ICUs. Welcome, Dawn, how are you?
Dawn: 1:00
I’m good. Thank you, Jamie. How are you?
Jamie: 1:03
I’m pretty good. I’m pretty good as well. Thanks. So, um, Don, you’re an occupational therapist, correct? Yes. Okay. And so you have some, some experience in in ICUs. Okay, so, um, for those of us who aren’t real familiar with that term, can you go ahead and explain what an NICU is?
Dawn: 1:31
Yes, well, NICU is an acronym for neonatal intensive care unit. So it a neonatal intensive care unit is a specialty area of a hospital that specifically cares for newborn babies that have medical complications. And that may be from being born prematurely, to having a traumatic birth, cardiac issues, some type of congenital defect that that causes them not to be able to go home right after being born.
Jamie: 2:14
Okay. Oh, wow. So, so those would all be considered traumatic births, that the examples you gave us know are required?
Dawn: 2:25
Few? Yes, you can use a lot of, well, if you’re born premature, it doesn’t. It’s not always because of a traumatic reason. Sometimes, no mom has been on bed rest, because she’s been having contractions and they’re not able to stop. And they know, they kind of know the baby’s coming. So it’s not necessarily dramatic. Or pretty woman could get rear ended at a stop sign and go into labor. And that might be a little bit more dramatic for her and for the baby, especially depending on where the delivery occurs. But sometimes when babies are born, things just don’t go well. Babies get stuck. Baby start physiologically not tolerating being born. And so you have like your emergency C sections, and you have babies who just are not able to breathe well on their own, their heart rate isn’t able to continue functioning, their heart attack, their hearts are able to continue functioning the way the way it should, and they need immediate specialized care. So not not all babies who end up in the NICU are are aware that that’s going to be that is going to be happening.
Jamie: 3:37
Okay, okay. All right. So, so what are the most common reasons for that you’ve seen? So you’ve been you’ve been working it with the NICU unit for for a few years? Correct?
Dawn: 3:53
Yes. I’ve been part time working in a local hospital at their NICU for 22 years. And recently, I have a kind of decrease my hours and I’m Per Diem. So I mostly work. Summers, and two Saturdays a month.
Jamie: 4:11
Oh, wow. Okay. Okay. So so how is how is the NICU unit different from like a typical nursery?
Dawn: 4:21
Okay, well, so this is a little complicated, more and more, so anyone would think so you there are actually four levels of newborn care that require some type of medical intervention. So you have a level one nursery, it’s can be called a well, a well, newborn nursery, basic newborn care, but it’s for it’s the kind of nursery that everyone expects their their babies to go to when when they’re born. These are for babies that are born full term and who are stable so they can breathe on their own, they can maintain their own body temperature there There’s no problems with cardiac or neurological stability. So there’s no problems with our hearts, there’s no, there’s no problems like with seizures, you can go to a newborn nursery if you’re born at around 35 weeks to, you know, to 37 weeks, which is considered to be preterm, but only if you you meet that level of medical stability, maintaining your temperature, you’re eating by mouth, okay? You don’t need any medical intervention. Sometimes a baby will be born and the assumption is the baby’s fine. But maybe their Apgar scores were a little lower than than the doctor would like. And they’ll they’ll observe the baby in a wellbore nursery for a couple of hours, and then maybe just to make sure they’re staying stable, and they can and everything’s okay, or make that assessment that the baby needs to be transferred. So it’s usually the only time that a baby that’s not quite stable is in a new one nurseries when they’re observing and trying to decide, can you know, is this baby recovering from being born? Or are we still having medical issues that need further workup? There is a level two or something called a special care nursery. Sometimes it’s called advanced newborn care. So these babies are going to have some health problems, but they’re not considered to be serious. So you can have a baby in a special care nursery that’s born after 32 weeks. But they usually don’t need support with breathing. And they’re not. And they’re not super small. So they’re going to weigh more than like 1500 grams, which is about three or four pounds. Sometimes babies, like if a baby’s born and they have a high bilirubin, you know, those orangey babies that they need to go into the blue lights. Sometimes they’ll send the babies home with a blue light blanket and the parents will treat him at home. But if they need to come to the hospital and be treated with the blue phototherapy, sometimes they’ll go to the special care nursery. If a baby goes home and runs a fever after like a day or two of being home, they might end up with a special care nursery. There’s nothing severe happening with a baby but but there’s still stuff going on that needs to be medically monitored.
Jamie: 7:29
Okay, so mom and dad or parents needed just a little bit of extra help, just in case something were to go wrong with with those guys. But they’re, they’re pretty stable. It’s just, it’s more just to be safe.
Dawn: 7:44
It’s not? Yes, basically, typical for a newborn baby to have a fever, for example. So okay, sometimes if labor has been drawn out, if there’s been a use of medications or procedures to kind of like move the delivery along, sometimes the baby will run a fever. And doctors will want to keep an eye on that fever to make sure that it’s not something significant. And so they want to monitor that baby in the hospital, not not at home. If a baby is born, and we’re not sure maybe maybe the nurse saw seizure, you know what they’re going to need to monitor that baby before sending them home. So it’s kind of a Yeah, I guess it’s just more it’s more of just, it’s a it’s for care for for babies that that they’re not ready to leave. But they’re not ready to say like, no, they need they need more specialized.
Jamie: 8:35
Okay, so it’s like you’re not you’re not completely healthy, but you’re not completely sick, either. You’re kind of you’re in the middle.
Dawn: 8:43
Yeah, we’re Yeah. Well, there’s a whole transition from being born. A baby has been growing inside the mom’s womb for nine months, and has been getting all of its options, oxygen supply for mom, all of its nutrients for mom, kidney function, liver function, all of that is being regulated by mom, and the baby has like take on that responsibility for their own physiology in a fairly short period of time.
Jamie: 9:18
You expect much from newborns?
Dawn: 9:19
I know well. Yeah, well, we’ll talk more more about that. You have a level three and level four, and ICUs. And that’s usually I think, what people think of when they think of NICU is is this level three or level four. Level three NICUs. Can handle babies that are that are born premature, that have critical illness, severe medical complications. They usually offer really the full the full range of, of pediatric medical specialties, respiratory support. MRI and that sort of thing, a level four NICU, that’s like the highest level of care for babies. So, sometimes what you’ll see it at a level four is maybe a baby needs surgery, for birth complications, you know, the maybe we already know that the baby has a cardiac defect that needs to be addressed surgically. So usually, those babies will end up in a level four, because you need to have, you need to have a surgeon on hand that is able to operate on a preterm baby or full term baby and be able to deal with those types of cardiac issues. We have babies that need to the due to due to kind of like anomalies in their anatomy, that it just needs to be addressed right away, or they need to be monitored and taken care of medically from a specific standpoint. And so those babies will typically end up more at a level four regional NICU, then then a baby who just needs to be monitored, or, you know, might just be running a fever. And we’re not sure why. You may see babies get transferred from one unit to another and we start off in the newborn and go to the newborn nursery because they need more specialized care. And then if the baby kind of has more increasing problems end up on a level three or level four NICU. Right. So sometimes when we’re training, we do have the ability to transport babies from locally, there is a level four NICU that has the ability to transport by helicopter, babies born at some of our more rural parts of California that don’t have level three or level four for NICUs. And, and fly them in. Oh, wow. Yeah, so it’s, nobody ever everybody was nice of like, you’re pregnant, you have your baby, and you go home, and everything is fine and right. Time, obviously, that that’s what happens. But unfortunately, sometimes things go, things don’t go as planned. And you need to have a higher level of medical support than, than you thought.
Jamie: 12:18
Yeah. So So what is so what is your role then as an occupational therapist in the NICU. So the primary role
Dawn: 12:30
is developmental handling, positioning, positive touch, and then feeding. And so and then both of those roles kind of encompass their own set of set of responsibilities. So depending on the depending on the baby, so if I’m working with a baby, who is considered to be a small, a small baby, so they’re born less than 28 weeks, so between 25 and 20 weeks gestation, once they’re, once they’ve been in the unit for a certain amount of time, sometimes it’s like about a week, sometimes it’s longer, and they reached a certain level of medical stability, then, then we start to go in and just kind of do some positive touch with what’s called containment. So you really just kind of put your hands on the baby and and don’t move. Okay? A lot of which we tried to encourage as early as possible that kangaroo care. So it’s the skin to skin contact with a parent, it doesn’t. It’s, it’s nice when it’s mom, and it’s preferable when it’s mom, but it can also be dad, and if the parents aren’t available. And there’s a surrogate parent involved, like a grandparent or or close or another family relative or close family friend that the parents have said, yes, we want them to do this for our child. And to start doing that as as early as possible. There’s a lot of poking that happens with these poor babies, you know, they want to have IVs, they are on breathing support. They have to their heel stick done, blood gets drawn. So there’s just a lot of things that happened that are life saving, and they need to happen, but they’re not necessarily positive experiences for the baby. So we also want to go in there and make sure that the baby’s experiencing positive. Positive touches is basically the term that we use when they get a little older and they’re more able to handle and we will start doing some infant massage. We used to start with the feet and kind of and work our way up closer to the body. We teach parents how to do that. So they’re they’re not just the idea with the positive touch and the kangaroo care and the infamous lodges that you’re not just coming to like stairs your baby while they lie either in an open warmer or, or an isolette that you’re actually participating in helping your child develop while they’re while they’re in the NICU.
Jamie: 14:59
You So you just mentioned a warmer and an isolette. So it’s a warmer is that literally just like,
Dawn: 15:07
it’s that open? Yeah, well, it’s, it’s, it’s an open, it’s an open bed, but it’s got a heat lamp. And it will, there’s ability to monitor the baby’s temperature through. Through through the bed itself, there’s a light above it, it so it’s got some things that go along with being in and out maybe one we’re that allows the medical team to properly care for care for the baby. So the, the light, the heating lamp is kind of like automatic. So the baby’s temperature, it’s, it’s programmed to the baby needs to keep the temperature of a certain of a certain degree. And then it’ll it’ll monitor if the baby starts to get cold, it’ll like kick up the heat a little bit. If the baby starts to get too warm, it’ll lower itself down. So yeah, so it’s, it’s more specialized than just putting like a lamp over the baby to keep to keep the baby warm. But just sometimes you’re giving them a bath and the NICU right you will get them they will get a lamp just so that it’s warm, and we’ll give them a bath, because we don’t want to get them back where they belong and get their temperature. You know, more stable again, the isolette is the enclosed is the enclosed bed, the air coming into that bed is filtered. The temperature is also regulated in sun inside the isolette too. But and it also does some other things like minimize noise. And then you can also minimize light. Because when you have your premature babies, you know, they’re supposed to be in utero they’re not they’re not supposed to have been born yet. They’re gonna have a hard time regulating their temperature. We don’t want them overexposed to sound we don’t want them overexposed to light. So we put them in these isolates and we try to kind of you there’s no mimicking the womb. Like, yeah, but you but you want sound muffled you want like muffled? Yes, as as much as you can. So and then the other thing that we do as OTS in the NICU, NICU is work on feeding, that that’s also something that a lot of families don’t realize, or a lot of people in general don’t realize I you know, go to a party, and they’re like, What do you do? And what do you do there, and it’s like, oh, I, I work with babies, because I have to learn how to eat and everyone always takes a double take. But babies are born knowing how to eat like, well, they’re born knowing how to eat when they’re full term, and they don’t have any medical complications, when they’re born prematurely, or there are significant medical complications. Eating isn’t doesn’t come as naturally as, as it should, because they’ve got these other factors interfering with their ability to coordinate, suck, swallow and breathe. And so they need, they need help in that area. And that’s a significant role for for OTs and and ICUs.
Jamie: 17:49
So how, I don’t know if you can briefly tell us how you teach a baby to eat? What how do you start? I mean, do you just like massage?
Dawn: 18:01
Well, first, first, it starts with an assessment. You know, there’s there’s specific gestational ages that you expect to see. Sucking, you know, I wouldn’t, wouldn’t necessarily and the baby also then needs to be able to tolerate being touched. So we’ll know going in that, you know, if a baby has problems maintaining their heart rate and their oxygenation, when you go in and change their diaper, they’re probably not going to handle anything in their in their mouth. And so we kind of have to build up that tolerance for handling. So that’s kind of the the overlap with the developmental, negative and positive maturity to handle with a need to handle handling. And are they sucking? You know, do they do they have that? That’s like reflex? What, what are we doing to to get that going. So with our premature babies, around 30 weeks or so, we’ll we’ll start really kind of looking at quality of Salkind and endorphins, you know, and usually we’re just happy with a couple of socks here and there. We don’t expect newborn sucking at 30 weeks, and around 33 weeks or so. And that’s those these are rough ages because each baby is going to be a little different. We may start doing something called Taste trials, where we have a baby who does suck well on a pacifier or gloved finger. And so we want to make sure that they’re also then able to swallow and we’ll do like, like, what five CC’s is a teaspoon. So we’ll start sometimes with a half a cc. So I mean, I don’t even have to measure that in teaspoon. So this is so tiny. And just to make sure that they they’re swallowing Okay, and we’ll do that a couple of times a day and just kind of then work up to between their the gestational age that’s appropriate for Feeding and Swallowing and what they’re able to and what they’re able to handle and kind of work on that together. If we have a baby who’s not able to swallow safely by about like that 36 to 40 weeks around that full term age, we may start introducing neuromuscular electrical stimulation to the muscles of the of the throat to kind of help facilitate a stronger swallow. Depending on overall neurological status of the baby, respiratory status, you know, we, you have to have that suck, swallow breathe, which means you have to be able to breathe, okay, so some of our babies because their lungs been compromised from being born early, breathe too fast or need supplemental oxygen oxygenation in order to breathe. I always try to work with the parents and say, think about walking up a flight of stairs and getting out of breath. And then my telling you, you have to drink this bottle of water while you continue up another flight of stairs. You can’t do it. Right? Read to fascinate at the same time. And that is a significant problem with a lot of the babies that are born early, especially if there’s been respiratory damage, or their respiratory issues and that they’re breathing too fast. And so they can’t safely eat. And so that becomes a Can we can we work on building endurance? Or do we ultimately need to make a decision about a child needing a feeding tube in order to go home and safely be fed? Wow. The same is true. Sorry. And these can happen across the board like our kids that have neurological issues. So maybe there has been a brain bleed or maybe their seizures and so can they maintain that sucking and safe swallow? Cardiac. babies that have cardiac problems can also have the same problem with coordinating, suck, swallow and breathe because the heart can affect your respirations. If the heart’s not pumping efficiently, then sometimes we read too fast to compensate for that. Excuse me?
Jamie: 21:44
Yeah. Wow. So it sounds like that you you spend a lot of time with each of your patients. When it’s when it’s a eating issue, or sucking swallowing? How often when when you go and see a patient, how often do you see them and how long generally do the sessions last?
Dawn: 22:09
What we usually do. So each hospital is going to be different in terms of the frequency of a therapy services. And some of that’s going to depend on on the baby. If we have a baby, that is it’s kind of low endurance, maybe we’re going to do an assessment and set up feeding strategy so that everybody kind of knows, okay, this baby gets tired quickly. And these are the strategies that work best. There are different kinds of nipples, bottle labels that we use some flow a little faster than others. And so for some babies, we’ll have them on the slowest flow possible, because that helps them with with their swallowing. We also like work on breastfeeding, but we can talk about that later. So we don’t usually want a baby to eat for longer than 20 to 30 minutes, depending on their overall condition anything longer than that. They’re just burning calories and they’re getting, and we’re just fatiguing them. But the therapy session may last longer, depending on what else we’re doing with them. The session is usually I would say unless I’m doing an intensive family training, my sessions are anywhere from a half an hour to an hour. But if I am working with a family who has lots of questions or needs more support, that session may go longer, but that’s not. That’s not typical. Okay. Then, then again, depending on the baby, and depending on the hospital, I may be seeing the child five days a week, I may be seeing them three days a week, I may it may be an evaluation and just was like, You know what, they don’t really need us. So we’re not gonna see them at all. So it is very individualized. Because I work on Saturdays, I’m usually seeing the children, the babies that are having significant issues with feeding. And we’re giving that extra therapy sessions are usually Monday through Friday. So if they’re being seen on Saturday, that is because they need extra support to get to get the eating going.
Jamie: 23:59
Okay, that makes sense. That makes sense. So it sounds like there, there would be some overlap and services in with with these patients. Is there like are there other? Are there other services that are going to be helping with like the feeding aspect and
Dawn: 24:20
yeah, so it again, it’s gonna depend on the hospital. So some hospitals have just ot that works in the NICU, some will have PT, some might have speech, and some have all three. So our OTA or actually, our licensure law in California states that I can only treat a patient that’s been evaluated by an OT, so we so usually end up splitting, kind of splitting the caseload, taking turns treating treating patients so you’ll get so maybe PT seeing a baby, but they are like you know what, there’s some sensory issues that are going on. We want ot to come in. OT might start feeding start Feeding a patient that has some specific learning goal or pharyngeal issues is like, you know, let’s get speech therapy involved. So we you have to work as a team, because you don’t want to, you don’t want to have duplication of services. But at the same time, you want to make sure that the baby is getting all the services that they need. We do also work with lactation consultants in the hospital with getting the premature babies and the babies that are medically fragile up in eating. And so if I know that lactation is going to work with mom on Tuesday, then I’m not going to treat that patient on Tuesday, I’ll come in on on Wednesday and do something else or I’ll work with her on the bottle feeding and let the lactation consultant work with the mom on breastfeeding. So it’s sometimes it’s the need of the patient, maybe they need a lactation consultant to work right now with the with the family and there’s not one available. So I’ll just step in and do it. Some of the some O T’s and some speech therapists are also licensed lactation consultants. That there’s there’s, you know, and some are also certified in infant massage. So there’s, there’s a National Association of Neonatal Therapists and and so there’s lots of people who have additional certifications besides their their, their primary PT, OT, or speech therapy license.
Jamie: 26:20
Okay, all right, you just answered my next question with which was, what kind of special training do you need?
Dawn: 26:28
there right now, there isn’t a specific, like certification course to be an ICU therapist. However, nobody’s going to hire a therapist to come work in their unit that either doesn’t have experience, or they don’t offer some sort of mentorship program. So typically, to even be able to be considered for an NICU position, you typically have to have at least two or three years experience some some facilities want five. And then usually your your, your shadowed, which means you’re following the primary therapist, and then as you, you know, get better at some of your skills and learning about what to do with the babies. Premature babies have a, they’re not just small newborn babies. They’re, they’re still developing as though they would be in utero. So their sensory system is different. Some babies, if they’re born early enough, their eyes are still fused, they haven’t been able to open their eyes yet. So there’s, so you need to be able to know how to how to assess where the baby’s at, and what kind of handling they can they can they can tolerate. Because you don’t want to go in and treat 30 weaker as though they were just a small full term, baby.
Jamie: 27:52
Yeah. So how long have you been in occupational therapy before you started working in the neonatal unit?
Dawn: 28:03
That’s a good question. Let’s see, I’ve been an OT for 33 years, and I’ve been in the NICU for 24. So you can do the math.
Jamie: 28:20
Wow, okay.
Dawn: 28:25
And then even with that training, the facility at the hospital I was at at the time did send me to and and then I see you at another hospital for for a number of I forget how many it was, that was back 22 years ago that I didn’t go to another hospital for like that shadowing and for that initial training. And then we did have a one therapist who had had a NICU experience that then continued that, then continue the training. Oh, okay. So yeah, I mean, I’ve done I’ve done training for, like new staff who wanted to come in. And usually, like I said, they have several years experience. Having inpatient experience is always good, because it’s, it’s nice to be comfortable around, you know, the nasal cannula or patient on a ventilator, or just, you know, the lead wires that are monitoring heart rate and respirations. And oh, two saturations and that kind of stuff. And so it can be a little, it can be a little nerve wracking, even as a therapist to go in there and be like, I have to do what and like, look at all these lines. So having that kind of experience helps also and it take, you know, I mean, like, even even having done this for 22 years. The thing that’s incredible about medicine is that they’re always finding new ways to help people. So every now and then I will get a patient and they’ll be like, I’ve never heard of this diagnosis before and I’ll have to go back to my team and be like, you know, what are we doing here? So there’s, there’s there’s always learning that that that has to that has to happen. We do have Typically, you would have somebody representing the therapy team at rounds, you know, when the doctors are kind of going over the the general case caseload so that you’re getting your education from the doctor, like, oh, we have this kiddo they’ve had this surgery is the first time we’ve ever done this, this is what you should see, if I’m seeing something that hasn’t, you know, that doesn’t, that I’m a little concerned about. Either go straight to the doctor and have a conversation with them. Or my team member who goes to arousal will bring that up, like, Hey, we’re seeing some swelling we didn’t think we were supposed to and it’s like, oh, no, it’s fine. Don’t worry about it. Okay. Okay, you know, you’re working. So it’s, you’re not working, you’re not working in isolation. You’re part of a team. And people want to know how the how the baby handled your session, you need to know how the baby handle other people’s sessions, you really have to have a great relationship with with your nurse. Because, you know, if your nurses like, Hey, I don’t know that today’s a good day for for intervention, we hadn’t this and this happened this morning, then you need to be able to go there said no, and and be okay with that. And not. And not try to challenge anything.
Jamie: 31:11
Okay. So there’s a lot of trust amongst the different providers of the various care. It sounds like there has to be a lot of trust in order to get this to work.
Dawn: 31:24
Yes, well, because if your nurse doesn’t trust you, she’s not going to let you touch your patient. And then you can’t help your patient. You know, the parent doesn’t trust the nurse, then, you know, then they they’re just anxious. And they can’t they’re not open to, to learning because their their concern is is somewhere else.
Jamie: 31:44
Okay, yeah. Yeah. So can you tell me about some of the successes that you’ve had with treating this this population?
Dawn: 31:56
Um, so that’s kind of interesting.
Jamie: 32:01
They’re all successes, they get to go home, right?
Dawn: 32:06
Okay, yes. Is so is a success. A child doesn’t need the feeding tube, because the he completely wasn’t successful. A child does go home with a feeding tube, as well, you know, especially if you have like a plan in place and the family’s comfortable and the child is still making progress. So I think that a success for me as a treating therapist in the NICU is that I’ve been able to make a relationship with a family, that they feel that their experience with me in therapy and their child in our facility was as positive as possible, right? Nobody wants to have a child born in the NICU, nobody wants one that has medical complications are great. I can get a parent to leave, and at least be able to look back on their experience as being as positive as possible. And I actually consider that to be a success. Because they don’t, right. Not only do what they can do and to and to kind of like put that on. And to put that expectation. It’s just not fair to the family or the baby.
Jamie: 33:08
Yeah. Okay. Yes, I guess really my question, what was that? Were were there any examples of a baby that you thought was the did even like much better than you expected that you know, just
Dawn: 33:22
that happens? Unfortunately, babies it like, why aren’t you doing better, like this doesn’t make any sense. And you have other kids that are just like, wow, but really where you see those, I guess, successes then would be when they they there are certain criteria that a baby has to meet. And almost all of our preterm, anyone born under 32 weeks automatically meets that we have a high risk. Follow up clinic most most hospitals have had are required, at least in the state of California for certain types of funding, to have some type of high risk follow up clinic so that babies receive developmental assessments at around six months of age adjusted. So you’re born three months early, you might be nine months, but adjusted to six months, and then you’ll get your first developmental assessment, then you come back at around 15 to 18 months, and then sometime after two, and we do these developmental assessments. And sometimes you’ll see kids that come back and you’re just like, wow, I as sick as you were as complicated as you were, you know, like, look at what you’re doing. I have had some kids come back that I was just kind of surprised at some of the struggles that we’re having. And then sometimes you’re just kind of pleased with how well somebody is doing for just what was expected of them. So we have had some kids that were not expected to be very interactive because of just because of their medical, the level of medical complications, and they’re able to interact with their family on that level that they’re able to do in the family and they’re able to bond with their parents and parents are able to bond with them. And so that is awesome. I would say I would consider it to be a success when a family comes in, and they bonded with her with their child as well as those measuring those developmental outcomes. How OT is that?
Jamie: 35:12
That was very OT
Dawn: 35:15
like, but it’s true at the same time, it’s like you nobody ever wants to take away from somebody for not be, you know, for not being somebody else, you know, you you want somebody to thrive and being who they who they are. And it’s the same for these these kiddos. That’s why I like that question. I kind of like I did kind of get stumped on when I was. Oh, it’s not how we see things.
Jamie: 35:41
So, are there any other any other? We’ve talked, you know, throughout this interview about some challenges of facing the population? Are there any other challenges that you you want to talk about work? Or maybe just want to give some advice to families that have a child who’s having some sort of incident?
Dawn: 36:05
Well, you know, I think it because it’s a kind of a combination of both? Both those questions, our biggest challenges tend to be families that don’t communicate well. You know, so, I mean, I, I’ve been in a room where a surgeons come in, talk to the mom, and, you know, ask, Do you have any questions? She said, No, and then leaves and then gets on the phone with her husband is like, surgery was here, I didn’t understand anything. He said. And I’m like, No, that’s not okay. You know, and then to join it, then surgeon to come back in the room is just a lot of work. And, and, and there’s a lot of, you know, it’s sometimes it’s hard when you’re, when you’re in the medical field, and you’re in this kind of like, level of medical care and the terminology that gets used to sometimes slip into that jargon. I’m sure I did that, like 500 times during this interview, like, I wasn’t going to do that. You know, and then to realize that people don’t know what you’re, what you’re what you’re saying. And so it’s it’s important to be able to that the family be able to ask those questions, and get in and get those answers so that they feel they have to feel comfortable with their baby in, in the hospital. So you’ll have families that are not comfortable. And they’re there 24/7. And they’re, and because they’re so anxious, it makes for difficult communication, or you’ll have families in the other extreme, they’re not comfortable with what’s going on. And they’re scared, so they disappear on us. And that’s not okay, either. You know, something in the middle is is, is ideal. And I get people don’t want other people knowing like their business, but it’s helpful if the your nurse knows that you’ve got three other kids at home and no transportation, and nobody can and no babysitters, rather than everyone thinking, we’re this mom go this, you know, is she taking the baby home? Like we have? No, she hasn’t called, we haven’t heard from her. She’s not responding to her phone calls, when it’s like she’s trying to deal with this personal crisis, and doesn’t want us to know what’s going on, you know, for, you know, and so I would say you, you kind of need to. Because once because there are things that we can do to help, there are a lot of hustles of Irana McDonald homes. So if you live far away, or you, you don’t have great transportation, maybe we can get you in a Ronald McDonald House, pre COVID. A lot of a lot of hospitals had not babysitting, but they did have like play rooms for siblings of a certain age. You know, Dorian COVID. And I don’t know that any of them have opened up just yet. But hopefully those will come back. But if we don’t know you need to help them do it, especially for I know for sure for moms who are breastfeeding, but sometimes for other families as well. They’ll give vouchers so that you can go get lunch at the cafeteria so that it’s not like you disappeared for four hours because she had to eat something and you needed to go home to make a sandwich because you couldn’t afford.
Jamie: 39:03
Okay, cafeteria, so you don’t have those things. And,
Dawn: 39:07
you know, we’ve done cat vouchers and what’s vouchers to just to, but like I said, if we if we don’t know there’s a problem, then we can’t know we can’t help out. So communication, I think is the biggest challenge,
Jamie: 39:22
okay. Really want to know their business? I mean, it’s like, please know, tell us everything. Leave nothing out. And then we’ll decide what’s important.
Dawn: 39:34
Well, yeah, I mean, I don’t we don’t need to know that you got to do a fight with your husband last night. But yes, it’s like or your spouse I should say.
Dawn; 39:44
It’s just sort of, like, Yeah, we don’t need to know. I mean, sometimes we find out that information as well, like, who’s arguing with you and who’s not allowed to come visit and who knows what, but if it affects the care of the child in the hospital, then it is important that we know Yeah, and then just Other big challenges that because most premature births or most traumatic births are not expected, there’s just a lot of anxiety, anxiety and even sometimes anger issues, you know, involved there too. And a lot of just a lack of understanding. No, not not understanding like, okay, my baby was was born this way, how come they’re not eating and then having to explain? Well, they’re, they’re breathing too fast. Well, that doesn’t make any sense. All babies eat Okay. And, and so we do have to deal with that issue a lot, too. We’re just a kind of a general lack of understanding about anatomy and physiology. And in neurology and the impact on like, how how we function, sometimes it’s it’s somebodies first introduction to
Challenges of Finding the Perfect School for an Autistic Student
Dina, a mother of a non-verbal teenager on the Autism spectrum, discusses the obstacles of finding the perfect school for her son. Dina shares her experiences with her son growing up with Autism. After researching a number of schools, Dina found the Westmoreland Academy in Pasadena, CA.
Host Speaker 0:31
Thank you for joining us for another episode of I am Able. The goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities.
Jamie: 0:43
Hello, everyone. With me today is Deena, how are you, Dana? How are you? I’m pretty good. Thank you. So, Deena, I wanted you to tell our listeners how, what is your connection to the autism community.
Dina: 1:05
This time, he is now 16 and a half and he is diagnosed with autism. So I guess I’ve been a member of this community for 16 and a half years.
Jamie: 1:19
Oh, wow. So what were the signs in your son that you did you first notice that led you to seek some help?
Dina: 1:30
And stuff, so my son Josh, was always from birth, very happy, easygoing, loving kid, but never made great eye contact from day one, he would look at you wouldn’t really respond to His name, if you call him from another room who kind of ignore you. Um, when he was about nine months, we started noticing, you know, the babbling and stuff, but it never kind of progressed to sounds. And I can say this now, because I have a total of four kids. He’s my oldest. And I didn’t really you know, as a first time parent, he kind of don’t always understand what they mean when they say like, they’re gonna babble and then jargon and all of these names for different sounds. He kind of just made the same sounds, and he would make them and look at you and talk to you. But we all sounded the same. And it wasn’t until he was about 12 months old. When he started and I started noticing that he wasn’t progressing to saying Mum and Dad, dad, it wasn’t coming. And there wasn’t really any other language coming. There wasn’t random little words or approximations of words. It was kind of just this mumbled. babble. And, and then when he was about 13 months old, and we were visiting my parents here in LA, we lived on the east coast at that time, and he had a letter, he was playing with these block letters, and it happened to be the letter W. And he loved watching Sesame Street, and there was a little blurb on the letter W, and all of a sudden, he starts going, Whoa, whoa, whoa, F. And we’re like, Ah, here’s this kid who doesn’t add Roa. So we’re like, wow, Josh, what is this look, and start saying, boo. And we’re like bamboo. And we realize who sang w. And then we realized he knew and could receptively and expressively in his own way, identify all the letters and numbers. Wow. So we realized here’s like 14 months. By 15 months, there was no question he was hyperelastic. And diagnosed, we took him to a developmental pediatrician at 19 months, because at this point, aside from letters saying his letters, there was no other words. He was really had hyper focus on anything that has to do with letters and numbers. And it was it was actually was about 18 months, we went to a developmental pediatrician and she’s like, look, you know, I think he’s on the spectrum. I think he would be diagnosed PDD and unless I want you to go start immediately with speech therapy and start with OT, and at 19 months we started and with everyday speech therapy, ot he had intensive I mean three times a week ot he had, at that time, twice a week speech therapy. And we realized he was also hyperlexia IQ, and at two he was fully reading spelling words. Filling out, like if you would put out on a piece of paper, which is your address, he would pick his address, if you gave him words with missing letters, he would pick the letters and put them in to fill up the rest of the words, but still really not making great eye contact, not following simple directions. And really no additional language. And it was very clear at that point that he also had, like severe apraxia. And so that was kind of like the beginning. It was never like one huge, you know, all of a sudden, a loss of a skill, it was just a progressive. Notice that these developmental steps didn’t come.
Jamie: 5:42
Oh, okay. So luckily, you were noticed this a little early, and you were able to have your pediatrician, kind of diagnose and lead you in the right direction.
Dina: 5:54
So it’s interesting, our pediatrician actually was an older gentleman who was very much in the wait and see mind. He would have been very happy to at three years old have sent us for a diagnosis or for we in the oldest of siblings, cousins, I have a large family. I knew something was off. So you know, it’s this moment in states that I always talk about. But the truth is, there was something off, I also at the time, had a very close friend who had two daughters. I know, girls, boys different developmentally. But at the same time, there was very clear signs that something was off, we thought maybe it was his hearing, because he wasn’t paying attention when you would call his name. So we went for the whole slew of hearing tests, all the different, you know, there’s behavioral, we did, you know, under sedation, a whole thing. And it really our development, our pediatrician, I think, thought I was crazy. Okay, so very much so. So I, you know, changed pediatricians, but, um, for you. And then even with regional center, here, it’s regional center on the East Coast, it has a different name, but the same kind of agency we went through. And I contacted them when he was 18 months old. And they themselves didn’t pick up on autism, they just thought he had a delay, he was developmentally delayed, and they refused to give us behavioral therapy was a whole thing. So when he was two years old, we took them to a different developmental pediatrician. And she is very renowned on the East Coast. And I had her report after you know, it’s like a three day evaluation with him this whole big thing. I brought them in the report. And they gave us about 30 hours of ABA and daily other services, because they realized they had really dropped the ball for a month before.
Jamie: 8:16
Wow.
Dina: 8:17
So we were very lucky. But again,
Jamie: 8:21
your assistant, which was really good, if you had not been persistent things could be very different now.
Dina: 8:28
That’s kind of the story of our life is persistence.
Jamie: 8:31
Yeah. Oh, wow. So going back, just for people who might not know what being hyperlexia is, or a proxy, can you explain those, those two terms for us?
Dina: 8:47
Sure. So hyperlexia IQ is the ability for kids and like little kids, they can read it often. It’s, it’s crazy. It’s they’re able to read, but they don’t often process what they’re reading. So it’s not that they’re all of a sudden picking up the newspaper and reading the articles and then can have a conversation with you about what they’re reading. Often times they can repeat back, but they really don’t understand what they’re saying. So it’s often hyperlexia is often accompanied by very strange language patterns. You have kids who literally will repeat things back to you and then you ask them their name, and they can’t say it’s, but Josh was a nonverbal hyperlexia, which is very rare. We actually went to a couple different speech therapists who specialized he was sick, we were able to actually use the hyperlexia to our benefit, because we realized that hand in hand goes this lack of receptive ability. So they can expressively oftentimes say what they’re reading but they’re not processing it. So we use the written word on every thing, I labeled my entire house. So the window had a label that said window because I knew he would read the word and then see the picture. And I also accompany that. We used pecs, I used to make a textbook. So I had the Meyer Johnson disc. And I used to print out all the little symbols, and then write our own words underneath your print pictures of things, and I labeled my entire house. So we Heavy D, and this was at like, you know, 1819 months old, my house is pretty much stickied with labels everywhere. But we were able to use it and he loved letters, and he loved words. So I’m very lucky in the sense that it was an easy thing to do. And we were able to build his receptive language. So while he still had a practice, yeah, which is a motor delay it basically the simplest explanation is that the message from his brain to his mouth gets lost. So he wants to say the word, but his mouth isn’t able to move in the way that he wants to move it to make the sound. So he can literally say, Mommy 10 times, and it can come out different every single time. And it’s really hard. So it took a lot of practice. And it’s a lot of muscle memory. And it was a lot of repetition. There’s a lot of speech therapists who specialize. We were very lucky that we found one who lived right near us, and she just adored Josh. So there were random times she would stop by your house on the way home from work. And be like, I just wanted to pop in and say hello and see how he’s doing, you know, work with him for 15 minutes. And she was great. Wow. Yeah, we were very, very lucky. And so we use these cards again, because Josh loved letters and things. And it was pictures. And then on the back were the words and it was approximations. And even now, I mean, he’s 16. And he still uses approximation, some sounds, he cannot say the poor kid j is one of those sounds you can’t say and his name is Josh and his brothers all their means start with Jay Leno name. It’s like, heartbreaking. But he still everything is is pretty much an approximation. And so we because of this dyspraxia, and his is pretty severe. And we actually found and thank God, we always say thank God for Apple. And there is a program that moved from DynaVox to Apple, when the iPad came out. It’s called Proloquo to go. And we are able to program it with his it’s basically symbols and it’s a push to talk. So you can use icons for different words and navigate through build sentences, and it speaks for you. So he uses it really well. It’s been years and 1000s of hours of work, but he’s able to use it because his own voice is just not as accurate as a lot of people’s Yeah.
Jamie: 13:12
So he he uses his communication device to, to speak in sentences, basically. Correct. And then he’s able to, to do some short answers with his own voice. But he relies more on his communicate communication device.
Dina: 13:31
Because of his approximate. He could speak he speaks in full sentences. You can it’s just it’s hard. It’s hard for him. And as anybody knows, anything that’s hard for you is not preferred. So right, I’m going to you know, it’s just nature, human nature, we’re not going to go and seek the long path. We’re going to try to find the shortcut. So rather than have him for the rest of his lakes, life speaking one word answers, he’s able to use this device and give us his full opinion on something, use adjectives and adverbs and describe things and speak his mind. And it’s a process. It’s not that it’s been something easy. And that’s come easy to him. This has been a long it’s a long road and we’re only at the very beginning of getting his voice out. But he’s doing a great job. Oh, wow.
Jamie: 14:29
Yes, he is doing a great job. I work with Josh and so I have to say that that he is doing really great and it’s it is really nice to hear that he’s able to give his opinion on things like what what movie he prefers to watch and why or what type of food he likes to eat and why which is which is really very cool. So what do you think has been your biggest challenge bringing him up so far being a child with autism?
Dina: 15:02
You know, it’s a really sad thing to say, and I’m sure a lot of parents will agree. But the challenge oftentimes is, in general, with any kid, I think is the lack of belief in abilities, that often comes from, let’s say, school district, or, you know, because their bottom, the only thing they care about is their bottom line, let’s be real. It’s all about the money. And we have time and time again, thought, and had to fight just for the most basic things for Josh. You know, he’s viewed as this kid who’s nonverbal? And because he may pause, longer than another person to answer a question. They see it as a lack of ability and a lack of intelligence rather than his disability and his need to take a moment to answer a question. And because he’s nonverbal, um, a lot of these standardized tests don’t, and really won’t get a good measure of what his abilities are. And so it’s been kind of sad that over the years, they’ve looked at him and seen, again, kid who has tremendous potential. And I mean, we’ve seen in this past year, this massive growth, but you have this, this view that because he can’t talk the way that we all can talk, and he can’t communicate his wants and needs or his opinions the way that we do. It means that he doesn’t have them. And I’ve been since day one, fighting to just get people to understand that it’s all locked in there. And he’s able to communicate, just it’s going to be communicated a little differently. So we’ve it’s this it’s been a long this is this has been a tough fight. I mean, we’re still fighting it right now. But I think that that’s the biggest challenge is having people understand that his inability to perform the way that we’ve figured out, and the way that we’ve set up performance standards doesn’t mean that he’s not capable. Just maybe we have to shift what our expectation is.
Jamie: 17:50
Right? Right. So we, we have this expectation that everybody is going to do things the same, and that if you can’t, that you’re not whole able and complete, which as, as we learned that everyone is whole able and complete just the way that they are. It’s just a matter of being able to communicate with with each person in the way that they’re able to communicate.
Dina: 18:17
We started with Josh, when we lived in New Jersey, there wasn’t a good program for him. So he started his preschool years, actually in a home program, because the school district didn’t have anything and we moved here. And we put him in our local program. And then when it was time for him to move to kindergarten, the program we wanted to put them in was a their, what they called, at the time the severely handicapped program. And it really I have to say it was babysitting. And that’s just been a lot of what the program is. And I fought very hard because I was a big proponent of full inclusion. And you would think that a small school district where they have the resources and the finances, they should be able to provide and they couldn’t. And so we thought and what started off the year was that he was the agreement was that he was going to be in gen ed for a minimum of minutes, not a max it was that he was going to be in that program for a minimum of and came time for our first parent teacher conference. And mid I guess, first semester, and the gen ed teachers like you know, it’d be really nice to see Josh in my class, like what are you talking about? She’s like, well, you know, he comes in like for just a little bit and then he leaves and I would love to see him in here all day. It would be lovely to have him in here. Yeah. So come to find out and this is a And I’m sure a lot of parents who have kids who are nonverbal can understand. Um, turns out, they were lying to me. And they weren’t actually doing what they were supposed to do. But I don’t have a kid who can tell me, mommy, I was in this class all day, sitting on the carpet and doing nothing and playing with playdough. So I called them on it. Thankfully, it was early enough in a year where I was able to do something, and Josh spent the entire rest of the year in the gen ed class. And he continued in Gen Ed with a pull up to resource because they very quickly realized I had that special ed teacher in kindergarten. And towards the end of the year, say to me to know that Josh knows all his letters and numbers. And I looked at him and this is in our IEP. And I looked at him and I was like, I’m really sorry, I guess you didn’t actually read his IEP. And he goes, What do you mean, and I suppose if you actually read his IEP, you would have seen that it’s noted that he said, relax the keys known as letters and numbers since he was 1315 months old, like, come on, oh, wow, you didn’t actually even pick up the thing. And I know that he is this, this gentleman was an anomaly. Most of the special ed teachers that I’ve met over the year are really a rare breed. These are people who deserve anybody who works in this field really deserves honors and salaries that unfortunately don’t exist in our society. But that aside, we Josh was in full inclusion and I fought and we it was a fight. I was constantly in I had a teacher who basically the next year told me I should sue the school district because they don’t know what they’re doing, and they can’t provide and that’s the only way I’m gonna get it. So we did. This has been a contentious battle, we are constantly blocked with them in a battle. But you inclusion, that was you mentioned inclusion. Yeah, right. Inclusion. Yeah. Right. Really, right. But But I will say this, we tried until it didn’t work for him anymore. And I think that that’s also an important thing parents have to realize, and to anybody that’s listening that has younger kids, what’s working for you one year, doesn’t mean it’s going to work the next year, and there’s nothing wrong. And there’s nothing wrong with saying, we tried this, it’s not working. So if I put my kid in a more restrictive program, it’s going to mean that we failed. That’s not how you have to look at it. At the end of the day, the only person that matters is your kid. So if it means that they’re going to have more attention, and be able to focus on the skills that they need to build, so that they can do more with their life later, by being in a more restrictive program and a restrictive setting. And that’s the right program. It’s it, you know, there’s nothing to say that my kid was in inclusion and is in gen ed, and so therefore, they’re better. I nobody cares. You know, what you do what you have to do for your kid, that’s the most important thing. I I can’t stress that enough, is the only person that matters is your kid.
Dina: 23:07
So true. Now I are true. I had tons of parents who complained to me that my kid was taking too much attention from a teacher in Gen Ed, or that my kid was too loud. And I have to tell you, like, he always had his own aid. So he was never taking attention from a teacher, he had his own aid. Like I, you know, you it doesn’t matter what you do, you do too little you do too much, somebody somewhere is going to get upset with you and tell you that your your, your child is getting something that their child deserves. And my response always is, well, you can go to the school district and requested aid, have an IEP See, have them evaluated, maybe there’s something that’s Sexually there, or talk to the school principal and tell them that you think that there needs to be more assistance in the classroom or go volunteer.
Jamie: 23:54
Oh, wow. Those are all good suggestions. Oh, very good suggestions. So do you have any other advice for parents, especially parents that are new to having autism diagnosis?
Dina: 24:14
The world has opened up so much since Josh was diagnosed and you know, every child, adult teenager, every person who has a diagnosis on the spectrum is different. No two people are alike. So two, no two people with this diagnosis are the same. I’m just because I’m saying that Josh has a practice yet and he’s you know, nonverbal. You may be thinking, Oh, my son is the same or my daughter is the same. I can tell you right now they may share characteristics, but everybody is different. And you know, Josh is in a he’s in a non public school right now. And I wish that there was a program that would be appropriate that was closer to home. We drive 45 minutes each way to go to school every day. And I will say this, it is worth, it is worth it for him. But, you know, there’s other schools that I’m sure you know, if we lived in a different school district would have had a closer program. And there’s nothing to say. You need to be your child’s advocate. And I know everybody says this. And I can’t stress this enough that if you think something is wrong, if you think that your child’s not getting what they need, you need to speak up. Nobody, they can’t read your mind, right. And what they see in school is often different than what we see at home. And I mean, in a way COVID and quarantine, and this year of homeschool and zoom school was kind of a blessing in disguise for us. But I can tell you for a fact that I was able to notice things with my child’s program that I would have never known otherwise. I’m he is in an amazing school. And I cannot say enough and stress enough that the program he’s in the teachers he has the support he’s getting is the best that he can get. And I would sell a kidney to keep them there. If that’s a Wow. But because I really think that he’s getting what he needs. But with that said, he really wasn’t getting what he needs what he needed. Because we realized he was bored. He wasn’t paying attention. He wasn’t answering questions. He was bored. And so at last year, this time, when I saw the work that was being sent home for him to do, I was like, This is really easy. Like, I think he can do more. And the responses were no, no, that doesn’t. I don’t think so. And so I said, well, um, let’s try it. Because what happens if we try it and it fails? Like, then, you know, try something else? We’ll just go back to what he was doing. But I think he’s bored. And guess what? He was bored. He was really bored. He went from reading two lines to read a two pages anyone to run? Oh, yeah, he went to reading and answering questions about a simple picture of like, Bart and Lisa are going to the mall. And where are they going? Who’s going to now reading about, you know, Jupiter and its moons or reading about marsupial’s and reading about, you know, Mars rocket, and he’s reading comp, much more complex things and much more age appropriate things. And he’s memory, like remembering everything. And he’s loving it. And he’s engaged. And yeah, awesome. Sometimes the questions, you know, and again, you got to know your kid, like, and work with them and talk to the teachers. And I was, as I said, very lucky that they were receptive. And we’re like, yeah, absolutely. I know that a lot of people think you know, IEPs, you really do need to participate, you really need to speak your mind, you really need to tell them your fears, your concerns, reach out to the teachers. Yes, they’re the ones working with him on a daily basis. But you know what? So are you, right? You have a sense of your kid that they don’t, you’re able to oftentimes push your kids in ways that they wouldn’t even think of because they’re not their parent. Right? And so you know, he can get mad at me, that’s okay. I’m if Mom, it’s my job, like, my kids can get mad at me. I don’t need to be their best friend. But my teachers, there is like a boundary. So I didn’t it was one thing for me to say, let’s get him a little frustrated. So we could work a little harder and see if it pushed him. Right. I don’t know that I would have maybe thought to do that or ask about that in school, and I wouldn’t have seen the work. Right. So as I said, it was really a blessing in disguise this whole like zoom school?
Jamie: 29:16
Yes, yes. I have to agree. I mean, Josh really has excelled in this format, which has been really good and, and now that he’s back in school, and he’s only been back in school a few days, but we can see that that is transferring back to, you know, his abilities that at school that he’s able to focus and, and everything, which is really awesome. Really awesome. So, what does the future look like for you and your family in regards to, you know, Josh and his education and the future?
Dina: 29:52
So, I mean, I wish I had a crystal ball. I think that it’s the biggest fear of any parents in general. We’re all caught, like just parents to make sure that you give your kids what they need so that they can succeed in life, you know, whether it’s the basic skills so that they can function as adults that they can live independently. With a special needs kid. I just don’t know, I really I don’t know, no, um, you know, I know that he’s in a non diploma program, so he’ll be educated by the school district till he’s 22. So we still have time. You know, we’re currently locked in a, the beginning of a legal battle with him to keep them in the program he’s in. As I said, Before, they want to put him in, they want to put him in a program that’s going to teach him to wipe down tables, after typical kids, because the belief is that that’s pretty much all he’s good for, because he’s nonverbal. Um, ya know, it’s kind of sad. And again, the program is a lovely program that they have here. But the program he’s in and he’s excelling in, is a much more academically rigorous program, and they don’t have an equivalent. So it’s a fight. Um, you know, I, we have a lot on our side, he’s staying, I should say, He’s saying he’s not staying. Um, but after that, he’ll probably come back to our district for that adult program, the post high school program, um, and hopefully, you know, we’ll learn some jobs skills and find something within the community, some sort of community based program. And we’re Orthodox Jews. And there are a lot of support programs that exist in the community. Not a lot. I’m saying a lot, but it’s really not, there are a few that are very popular and heavily supported and funded. And I keep hearing about more, and I just keep hoping, and I wish I had money to support all of them. And if because it’s just such a, there’s such a need. And but you know, my hope is that one day, maybe he would be independent enough to go live in a group home or something, but I, I don’t know. I don’t know. I think that’s too far down the line. Even Right. Like,
Jamie: 32:35
almost six years before you really have to, yeah.
Dina: 32:39
You know, it’s just knowing that like, those are the things on that I have a friend who has a 17 year old son, he is like a year older than Josh. And so we often talk to joke that we’re going to build, you know, a garage apartment behind her house because she has more space, and then our boys will be roommates behind her house. Oh, sounds like a good person. Also, he’s nonverbal. Praxic. Like, really? Okay, your diagnoses? hugely different children. Really. We? We? Yeah, so we always joke that, like, they’ll just be roommates. Together, but um, it’s, it’s just, it’s, it’s hard. It’s scary. You know, COVID everything, it was pretty scary. Thinking, you know, it was that wake up of God forbid, what happens if, if I’m not here, and if my husband’s not here, and who’s gonna take care and what’s gonna be and as I said, I have three other children. And it’s always a terrible thing to think about. But we’ve kind of been raising our kids with, you know, one day, we won’t be here. And one day, you are going to have to step up and except that he’s your brother, and you’re going to have a responsibility. And I have to say, I’m very blessed, because my children already have always, one of my kids was like, well, whatever I do in life, I have to remember that I’m gonna have to be able to support my own family, and have a job, but then also maybe save money so that I can help Josh. It’s really sweet. I mean, he’s, he’s eight years old. So here’s an eight year old. I’m like, Okay, I guess, like, in a way, oh, my god, what am I doing? It’s my kids, how terrible for him to carry this on his shoulders, but at the same time, what you get in life, like, you know, right, but he is part
Jamie: 34:25
of Yeah, it’s part of being in a family is that everybody has to take care of everybody else. That’s, that’s really, really great that at eight years old, he’s already thinking that that’s it. That’s just my responsibility as a brother, to take care of my family.
Dina: 34:41
And the truth is, I think he would think of that with any of his siblings. You know, I, if anybody needs help, that’s kind of just how we’re trying to raise all our kids. You see somebody in need in our community and anywhere, you know, you gotta help.
Jamie: 34:59
That’s great. So is there anything else that you would like people in the community to know about autism
Dina: 35:14
This is not a life ending diagnosis. This is not, you know, this death sentence that hangs over your head that says, life is over, I can never do things anymore. I, you know, my family life is never going to be the same, you’re right, it’s never going to be the same. But your child today is not different than your child was yesterday, they’re the same kid, you are the same person, the only thing that you have open to you are more avenues and more possibilities for assistance. There are tons and tons of resources out there for people who have autism diagnoses and families who have autism diagnoses. And it’s an amazing thing. Um, and I really hope that people take advantage of these resources. And know that there are so many people, so many communities available to support, both financially but also emotionally. And that’s an important thing. Yeah, gotta find people who can talk, you can talk to that, understand what you’re going through. And know that you don’t discount the people in your life that don’t understand. Just know that like, they’re, they’re well, meaning it’s, I’ve had many people over the years tell me, you know, like, oh, we get it. It’s so hard. No, you don’t get it, you know, I am not going to and that’s okay. And that’s okay. And I appreciate that you’re trying. If there were times when I was upset about it, there were times when I just wanted to write people off. And and it’s true, there’s people that I just can’t be around anymore, that I used to be very close with that don’t get it. And not only do they not get it, they so very blatantly don’t get it and they think they do that they wind up doing more harm than good. And that’s okay to say, You know what, I’m going to take a step back. Like I think that we don’t do that often enough as adults. But if somebody wants to lend a hand cook you dinner once, watch your kids offer to be there for you let them
Jamie: 37:26
okay. Good advice. Okay, so you talked about people wanting to help and and allowing them to do that. One thing we didn’t really talk about is a typical day in the life of living with Josh, can you give us a kind of an example of like a typical school day is like.
Dina: 37:55
So, as I said, he goes to school about 45 minutes away, so we usually leave an hour for travel. So typical day is waking him up at 630. Taking his meds, and it’s like pulling Josh out of bed. I mean, the kid, he’s a teenager, so he would sleep till noon and lead them. So it’s literally pulling him out of bed, getting him dressed, having him brush his teeth coming downstairs, giving him his meds and trying to get him to eat something. And before we leave the house, the meantime also getting all my other kids up and ready for school, everybody making sure they all have their things and all of their backpacks and everybody’s homework. And then I’ve been driving Josh so we get out to go in the car and go on a ride and I dropped them off. You know, life has been a little different now that he’s back in school. So he’s in school now from eight to 1230. So now it’s just picking him up and driving home and trying to convince him to eat something for lunch. His the medicine he’s on just has some side effects and he’s not eating. So that’s a challenge lately. Um, he usually has a little bit of time to relax after school. He watches his new favorite show, not new but his favorite show is the Simpsons so he’ll sit on the couch and watch The Simpsons for a little bit color play on his iPad. And he has ABA therapy and home starting about 330 I’m so depending on the day, I’m either I’m here with him when he has therapy. Sometimes I have somebody else who’s here helping to watch him while I go pick up my other kids from school, or my husband comes home from work early to stay home, be home with him while I go get them from school or help. It’s a challenge. And this is something that like people don’t realize is that when you have a kid with special needs, you always have to have somebody around that can help and be be there. Because therapies usually require an adult’s present. Okay. So either you’re taking them somewhere and they’re having therapy, or you’re going it’s it’s pretty challenging to do other things. So like one of my kids wanted to do baseball after school, but I just don’t have the time to be transporting back and forth to like, 50 different baseball games, and then the other one and to do soccer, it just, I feel bad, but I told them this spring, nothing. Oh, we’re doing nothing. We’re gonna be good. No play in the backyard. Not doing any sports. So it’s, um, my kids come home from school. Dinners need, Josh finishes therapy anytime between five and six. Again, fight to get him to eat dinner. Um, and then it’s just relaxing, trying to help everybody with their homework. Seeing if Josh wants to play ping pong sometimes play on the Wii with his brothers. It’s always you know, every night is different, um, usually goes upstairs around eight and then sometime around 830 Get them in the shower, and get all the other kids showered, ready for bed? make lunches for the next day. And then that’s it. And then it starts again.
Nonverbal Teenager on the Autism Spectrum Shares His Experience Going to School
Josh, a non-verbal teenager shares his experience going to school at Westmoreland Academy (WA). Josh communicates through the Proloque2Go app on an iPad. Josh, and his mom Dina, share his challenges and accomplishments and at school and what he likes to do for fun!
Host Speaker 0:40
Thank you for joining us for another episode of I am Able. The goal of our podcast is to bring acceptance and awareness to our communities when working with educating and living with people of all abilities.
Jamie: 0:53
Hello, everyone. I’m Jamie Lord Tovar, and today I am here with Josh. Hi, Josh. Good morning.
Josh: 1:03
Good morning.
Jamie: 1:06
How are you today? How are you feeling?
Josh: 1:11
I’m doing good.
Jamie: 1:13
I’m so glad. I’m doing good as well. Thank you very much. I I forgot to mention that your mom Dina is here with us also today. Thank you for joining us.
Dina: 1:29
Our pleasure. Thank you for having us.
Jamie: 1:33
Oh, my pleasure. I I work with Josh and I thought that it would be nice for him to have the opportunity to tell everyone out there a little bit about himself. So Josh, how about that? Can you tell us a little bit about yourself? How old are you?
Josh: 1:55
Yes. I am 16 years old.
Jamie: 2:00
Oh, wow. oughta be 16 again. And Josh, who do you live with?
Josh: 2:09
I live with my mom and dad and three brothers.
Jamie: 2:12
Oh, wow. You have three brothers? Yeah. Do you like having brothers?
Josh: 2:21
I like having brothers. There’s always someone to play with.
Jamie: 2:26
Oh, nice. I was gonna ask you why you like having brothers. Great. So are there any other reasons why you like having brothers?
Josh: 2:40
No.
Jamie: 2:44
I like your honesty. I like your honesty. So Josh, I was wondering, can you tell us who helps you while you’re at home?
Josh: 2:56
My mom helps me at home. So does my dad. So do my brothers.
Jamie: 3:03
Also, brothers are good for things besides just playing with and I guess to get a little bit of help, right?
Josh: 3:09
Yeah, yeah,
Jamie: 3:11
yeah. So and what kind of things? Do they help you with? What what is like, what does mom help us?
Josh: 3:19
They help me get what I need. They helped me turn on the TV to watch The Simpsons.
Jamie: 3:26
To watch what I’m sorry, what was that?
Josh: 3:29
He likes to watch The Simpsons. So if I help him put it on TV.
Jamie: 3:38
Who doesn’t love the Simpsons? It’s very important to be to be entertained for sure. So what other things do they help you with?
Dina: 3:51
Joshua, do they help you?
Jamie: 3:56
Do they help you with like schoolwork or?
Josh: 4:00
Yes, yes.
Jamie: 4:04
Anything else?
Josh: 4:06
No.
Dina: 4:08
Okay. All right.
Jamie: 4:11
So Josh, I mentioned that I work with you. What school do you go to?
Josh: 4:18
I go to I go to school at Westmoreland.
Jamie: 4:21
Westmoreland. It’s a beautiful campus, isn’t it?
Josh: 4:25
Yes, yes.
Jamie: 4:28
So what is your favorite part of going to school and why?
Josh: 4:34
I like seeing my friends and learning.
Jamie: 4:37
Oh, nice. What, what’s your favorite subject?
Josh: 4:42
I like history. I like to learn about things that happened. I like to read
Jamie: 4:50
Oh, wow. Yeah, that’s really important that that you learn about things from the past. Yeah. So what What things about history do you like to learn about do you like to learn about like events that happened or
Dina: 5:12
what do you like about history?
Jamie: 5:17
Or everything?
Josh: 5:21
Everything,
Jamie: 5:22
everything. They’re like a sponge. Yep. Right. That’s Josh. Yeah, pretty much. So you said that you? You have friends at school? Do you have a best friend?
Josh: 5:38
I have lots of friends at school. My best friend is my brother Jason.
Jamie: 5:44
Oh, that’s so awesome.
Dina: 5:49
Yeah, they’re they’re very close. Josh and Jason.
Jamie: 5:52
That’s really cool. It’s always good to have a best friend. That’s that’s your brother? Cuz you’ll always have them. Right. Right. No matter what.
Dina: 6:04
What do you think about that?
Josh: 6:07
Yes.
Jamie: 6:09
So what kind of things do you do with Jason? watch The Simpsons.
Josh: 6:17
Hi, we play we
Jamie: 6:19
Yeah, I was gonna say you guys. You You’re, you’re a webmaster, right?
Josh: 6:24
Yes. Yeah.
Jamie: 6:28
I like we bowling myself. You baseball?
Dina: 6:32
It’s a favorite here too.
Jamie: 6:38
So do you have someone who helps you at school?
Josh: 6:45
Helps me at school?
Jamie: 6:47
And what kind of things does she help you with?
Josh: 6:51
She helps me when I need help with my work. Okay, everything. She helps me to talk.
Jamie: 6:59
Oh, that’s very important.
Josh: 7:02
Yeah.
Jamie: 7:04
So Josh, do you? Do you think you’re a good student? Why or why not?
Josh: 7:12
I like school and work very hard.
Dina: 7:15
I can say as Josh’s mom, he is the hardest working kid I know. And he is a great student. Because he really, you can see he really enjoys learning. No, no,
Jamie: 7:29
that’s true. I would have to agree with you on that. Yes. And he’s done really well, despite distance learning. He’s he was really able to thrive and to adapt, which has been really amazing. Are you going to be shy now? Josh, you don’t want us to talk about how how amazing you are.
Dina: 7:52
Yeah, we’re getting a little to be adjusted. quite humble. Okay. We’ll go back to the questions we want to talk
Jamie: 7:59
about. Okay. Yes, yes. So, Josh, you said you’d like The Simpsons you you like to play we for fun? Are there any other things that you like to do for fun?
Josh: 8:15
I like to watch play on my iPad. I like to play bowling and baseball on the week. I like to swim.
Jamie: 8:29
Oh, wow. Yeah. You have a lot of interest. I also know that you’re an artist, right?
Dina: 8:37
Yes. Do you like art?
Josh: 8:40
Yes, yes. Yeah,
Dina: 8:45
I guess that’s all he has.
Jamie: 8:47
He’s very humble. He’s actually he’s, you’ve sold a couple pieces, right?
Dina: 8:54
Yeah, it’s a little crazy.
Dina: 8:56
In a minute, okay. Yeah, he’s a I don’t know what the term would be. But he’s, he’s sold artwork. It’s kind of crazy.
Jamie: 9:05
I would say that he is a professional artist. He’s had art that’s been sold. There we go. So, Josh, are there anything? Any other things that you’re really good at?
Josh: 9:29
I’m really good at whistling whistling but I’m a fast learner.
Jamie: 9:33
That’s true too. Oh, Josh Can you can you whistle for us? Can you show us how? How you Whistle? Whistle
Dina: 9:45
you do it.
Jamie: 9:49
Not not on request. Apparently.
Dina: 9:51
He’s not a dog. He will not support
Jamie: 9:55
that’s true. Oh, that’s funny. So, Josh, we’ve talked about you had some unique abilities. How do you think they’ve helped you? Do you think that your unique abilities have helped you?
Dina: 10:14
Do you think they helped you?
Josh: 10:16
Yes.
Jamie: 10:21
Okay. All right. All right, Josh, we only have a couple more questions. Okay. All right. So I, I was wondering if there are any things that you would like to learn in the future that you?
Josh: 10:34
Wow. I want to learn more about history and science. I like to watch the news and hear about everything.
Jamie: 10:43
Oh, wow. Okay. All right. So do you have any other dreams for the future?
Josh: 10:50
Maybe maybe,
Jamie: 10:52
still still open to the possibilities? I know at 16? That’s a really deep question to ask right.
Dina: 10:53
at 42.
Jamie: 10:55
It’s still I think it doesn’t matter how old you are you still that’s kind of one of those things. We’re always open to possibilities. Okay. So Josh, I was wondering, who are your biggest role models? Do you look up to?
Dina: 11:25
You look up to Josh.
Josh: 11:26
Mommy.
Jamie: 11:29
Oh, that was sweet. Josh. The best? Yes. Especially as for a teenager to say. That’s why we love you, Josh. All right, my friend. So I just have one final question for you. Okay. Is what? Or is there any other thing that you would like people to know about yourself? Or people with autism? Is there anything you want us that you want the public to know?
Josh: 12:06
I want people to know, I’m happy, smart.
Dina: 12:12
Oh, that’s you in a nutshell.
Jamie: 12:13
I was gonna say, Yeah, that’s so awesome. I can definitely vouch for the smart and and most of the time, yes, I would say that you’re a very happy guy. Yeah. That’s awesome. All right.
Dina: 12:28
What do we got to miss Jamie?
Josh: 12:30
Thank you. Thank you.
Jamie: 12:33
All. Thank you so very much. I really appreciate you taking the time to talk to me today. And letting everyone get to know a little bit more about you.
Dina: 12:43
Thank you so much.
Jamie: 12:45
Thank you guys. So Josh, I will talk to you later then. It was a pleasure. All right, you guys. Thank you. Have a great day. You too. Bye.