Nov 4     29 min read

Father Shares His Journey Raising a Daughter with Autism

Updated: Dec 1

In this podcast, Joe talks about his experiences raising his daughter, Mari, who has Autism.  He talks about the signs he noticed when she was young that lead to her diagnosis such as limited eye contact, speech delays, not meeting her developmental milestones, etc.  He also talks about what he learned about Autism and how to help his daughter navigate through life.


Host Speaker  0:21 

Thank you for joining us for another episode of I am Able. The goal of our podcast is to bring awareness and acceptance to our communities when working with educating and living with people of all abilities. Our co-sponsors our total education solutions, which provides a variety of educational, behavioral, and therapeutic services to people of all abilities throughout the United States, and the Institute for the redesign of learning, which operates a number of educational and transitional services for people of all abilities throughout the southern California. In this month’s episodes, we are talking with community members and experts about ASD. Autism Spectrum Disorder, also known as ASD, is a developmental disability that can cause significant social communication and behavioral challenges. People with ASD may communicate, interact or interact and behave and learn in different ways than some other people. To learning, thinking and problem solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives, while others need less. ASD occurs in all racial, ethnic and socio-economic groups. But it is about four times more common among boys than in girls. In this month’s podcast, we’re aiming to educate the community about living and working with people on the autism spectrum. To begin this month series, we interviewed a father of a child with autism. Joe’s daughter has recently graduated high school and is now attending community college. Joe brings us a unique view of what it’s like to raise a child with autism. So without further delay, I’d like to introduce our moderator, Jamie.

Jamie:  2:13 

Good morning, everyone. I’m Jamie. Lord Tovar, and I’m here with Joe and Mari this morning. Good morning, guys. Morning and learning, learning. So we’re gonna start off talking with Joe first. And then and then we’ll go ahead and and talk to Mari afterwards. So Joe, can you tell me about your connection to the autism community?

Joe:  2:39 

Well, I’m the proud prayer proud parent of 18 year old daughter who was diagnosed with autism believe she was diagnosed. Oh, geez. fairly early. I believe we we had diagnosed around three years old. So we caught it really early.

Jamie:  3:00 

So what were some of the signs that you noticed that made you think that that maybe she might have some some issues?

Joe:  3:09 

Well, there’s definitely a speech delay. That was one of our first case, there was a lot, not a lot of milestones been met on time. There was a delay in that. There wasn’t a whole lot of eye contact that had very concerned. And then a little bit later, when she was when she was playing with toys, she tend to line them up. And anything that was taken out of order really just disturbed her and she’d go into, you know, she’d be acting out and there wasn’t a lot of pure peer to peer play. So she wasn’t playing with others who wasn’t playing alongside others. So those were a lot of keys that kind of set up the red flags. So that we should go and have her diagnosed.

Jamie:  4:04 

So you mentioned a few things no eye contact. What were some of the and no play to play with others? What were there any other really early signs that you noticed?

Joe:  4:18 

A lot? Um, I could tell that what the sim the stimming started almost after that. We’re sure she shake her hands or she she almost what we’d call on what I described as freezing where she freeze employees. Okay. It’s really weird thing. But she would put her her hands or her fingers up, turn those to relieve pressure. There was one funny thing that we we thought was funny at the time that she was seeking a lot of stimulation from pressure, so she put herself underneath cushions of the couch to relieve some of that stimulation. And we thought it was cute. But we found out that that was something that she was, you know, searching for for pressure, right? That was another thing we think, Oh, how cute but no, actually, it was a, it was another sign that we had no idea of as being a new parent. That was a thing we just said, we just played along with it. But it’s totally fine. She doesn’t do it anymore. So how.

Jamie:  5:32 

So how old was she was when she started seeking pressure like that? Was she like really young? Or?

Joe:  5:38 

Yeah, I would say so. Before three years old, I was three. Yeah, around two years old. And shortly after, since she could walk she found the cushions of the couch, see one underneath them?

Jamie:  5:51 

Okay. And you were saying that there were some other environment? milestones that developmental milestones that she wasn’t reaching that you noticed?

Joe:  6:01 

Oh, for sure. Well, the the, the the speech for that, that was for sure. She wasn’t meeting meeting those milestones, I would have to say, a lot of, you know, the typical milestones, such as the walking and stuff that that came a couple months later than usual. That wasn’t a huge red flag, but a lot of the eye contact that was very alarming that she wasn’t responding to social cues and things like that. So that was that was very concerning.

Jamie:  6:37 

And so with her speech, what did she start speaking and then then lose speech, or was it just strictly she was not, she was not meeting developmental milestones for speech,

Joe:  6:50 

she had a case of echolalia, where she was obviously mimicking what she heard. But that was her form of speech. She was basically responding to us and whatever she heard on the TV, and we had to turn that into, you know, her normal responses, we kind of manipulate that into if she wanted something, we need to find something of what she was trying to address that as, and we, we change it to where she’d say something where she wanted us, but it was something she heard on TV, and we’d had to structure her to say I want to, and that that was very difficult, because she knew she was she wanted but that’s not how she wanted to say it. The I want to use was a very tough one. She would just say we finally got her to say the word juice. And was that that was great. But she wasn’t going to get the juice until she said the words I want to use. And it became a shouting match between her mother and I and, and her and she finally said it. And she got her juice. I think the the hardest one was her saying where she wanted to watch a video. And she she described that as bo t. I know what she wanted. But there was going to be a struggle there was going to be a battle for her to say I want video. And that lasted I would have to say about an hour and I’m not an hour is a long time.

Jamie:  8:31 

Yes it is.

Joe:  8:32 

We finally got her to say it and we just cried after that. We said okay, you can watch anything you want it we were all crying but she got she got to watch her video at the end.

Jamie:  8:43 

Yay. Victory. Yeah. So what do you think are the your biggest challenges in bringing up a child with autism? What do you think is challenge?

Joe:  9:01 

Well, depending on depending on what what aspect of bringing her up, there was a lot of things bringing her out into the public was a big struggle. Basically, because she wasn’t ready for social cues and such as it’s time to go or something along those lines. Early on going to the market, just going to the market was a struggle because she was very structured. And she couldn’t skip an aisle in the supermarket without having a meltdown. So the place we took her to early on, it wasn’t part of our our therapy, but it was a childcare center who’s purposely went to the market and purposely skipped the aisles because we all knew that if we weren’t going to break her out of this structured pattern She just wasn’t going to progress, right. So they did all the grunt work for us as far as the supermarket is concerned. But they all did it in a group. And if there, if her peers weren’t melting down, well, then she learned that, well, it’s really not so bad, that we can skip the aisles, and we can progress. So early on, they, they, they taught us that she’s going to cry. And she says she won’t progress unless she gets passes. So there was a lot of breaking barriers that we had to learn anywhere from picking up her toys, to, you know, eating with her peers. We all learned that this is the way that we behave in these social situations. So that was definitely that was definitely a struggle in part of bringing her up.

Jamie:  10:55 

Now, so with that group therapy, where were the parents there, too? Or was it just the they would bring them to the group of children to the supermarket to work on being able to skip the aisles? Was that something that you were directly involved in? Or that was

Joe:  11:12 

not at all? This was all done amongst her peers and the children that she was with me it hurt her instructors?

Jamie:  11:22 

So, so what so they would take them to skip aisles? And then how, how did they? How did they teach the other children to to be able to regulate themselves? When they when things were out of sync?

Joe:  11:45 

Well, some of it was done in in certain time trials, where they would only do well, I would consider baby steps where they wouldn’t do it all, every single aisle in one day, right? That was just too much for them. We would just do skip one aisle and they say, Oh, it’s okay. But they would, they would, there would be Matt downs. But eventually, they would do the whole supermarket. It wasn’t just, you can’t take a child into that setting and just go full blown throughout the market and go from one end to the other. That’s that’s not the way it works, right? If there was, let’s say, for example, if we if, if I would do it, or my wife would do it, we would have to do it. We couldn’t. Okay, let me let me rephrase this. If if we were to go into a any kind of retail store, we would have, we couldn’t go there for the sole purpose of buying something, we first had to introduce her to the concept of retail store, and then say, Okay, this is what we’re doing here today. And we’re going to, we’re just going to go in, we’re going to go out, you know, and that was enough for that day. If If my wife and I were to go to Ikea, that was months, months of planning, okay, where we would have to, there was a slide at IKEA. And she loved this slide. But to go through IKEA is a long process. So we eventually made it to the slide, she didn’t want to leave. And that was a huge meltdown in front of in public. as embarrassed as we were, we knew that this was something that we had to overcome. So we let her play and we let the meltdown happen a multiple times. And we eventually have to say it’s time to go. Or what we would do is set a timer, we would go anywhere. I think we started the first one at about 15 minutes. And then she would get a social cue of a beeping sound. And then we will leave whether there was a meltdown or not, we would leave. So there had to be that cue that it would have, we had to establish that it was okay to leave. So that’s how we started that.

Jamie:  14:10 

So what kind of meltdowns would she have in the store? I mean, can you describe one, to me,

Joe:  14:18 

just a lot of screaming, a lot of crying, a lot of laying on the floor, a lot of the dead weight that you would normally get from a child who didn’t want to go, that tension was no different than any kid that wanted to go that didn’t want to leave the place that she was enjoying. But it was magnified, it seemed it was magnified. But really, it was no different than an average tantrum but her tantrums would go on if you didn’t remove her from the situations they would just continue.

Jamie:  14:45 

And how as a parent and you’re watching other people react, how did that make you feel that here your child is having this meltdown and you kind of have to let it happen just so that she can get through it did Do you? Did you say things to other people around you? Did you just kind of ignore everyone else? What did you do? How did you deal with that?

Joe:  15:10 

Deal with it the best way I could. I basically had to ignore everybody around me and focus on her. This was we, we felt the guilt, we felt the shame, we felt all the stares at us, you know, with anything that would you know, where they would consider us unfit parents. Because sometimes we would let her tantrum just to release her frustration. So, we just had to do the best we could with what we knew. Luckily, some of our therapists early on, instructed us to, to let her have the tantrum, or, depending on what the situation was, or remove her from the situation. At least we had that option. But we did we did face a lot of ridicule from other parents.

Jamie:  16:12 

I’m sorry to hear that

Joe:  16:15 

goes with the territory.

Jamie:  16:18 

Unfortunately. So you know, the last probably decade or so it seems like that people have become more aware of autism. Now that, that Mario is an adult, have you noticed changes in the world regarding autism since she was little?

Joe:  16:43 

I would say so. But it did tell you the truth. Unless you’re in that setting, where there’s a large gathering of people diagnosed with autism, I don’t see it very often. One, one sign would be if you know, there’s obviously a tattoo that someone has of a puzzle, a puzzle piece, I’ll ask them, you know, and they’ll say they have a relative. Other than that, I don’t see it. Maybe it’s because I’m not looking for it. I know we have the parents have the radar and things like that. But really, I’m not not looking for it. Okay, I would say that some people have become more tolerant, but only if those people have been, I wouldn’t say exposed, but have been in a situation where they do. Either they do or they do know somebody that has autism. Otherwise, I don’t expect people to understand.

Jamie:  17:45 

No, you still even with as much information that’s out there. You don’t feel like that other people are going to understand that it’s

Joe:  17:59 

I Do I Do you still feel so much. So much more of a educator on the on this subject. You know, although I’m not an expert, I am a parent, and I’ve lived with it this whole time. I’m not going to toot my own horn. But yes, I do see the signs of somebody that has a meltdown. And I do know sometimes how to distract that person before they have it.

Jamie:  18:22 

Oh, nice. Okay, yeah,

Joe:  18:25 

we do have some tools at our disposal, that’s we don’t always have to have a meltdown. You know, we can just go and, and distract that person. It much like you know, you distract a cat or a dog. I don’t want to, you know, compare the two. But it’s very much like that, you know, where somebody who is having a rough time, and you just have a squeaky toy or something like that. And it just says, Oh, what’s that? And it’s very much taken him out of that situation to something else.

Jamie:  18:57 

That’s nice. So So you learned early on different strategies to help redirect meltdown. So what are what are some of those strategies? Could you share with with us some of the things that worked for you, besides the screen?

Joe:  19:17 

Yeah, very much. So we found a lot of success. And when we took Marissa to the mall, although she she had a very short attention span. We always knew that. She She She enjoyed the mall because she always knew that she she did what was he needed to do? She would have her lemonade and a pretzel. And that was good enough for her and we went so far with just a pretzel and some lemonade. Yeah, that went very far. It probably went as far as the lemonade and pretzel lasted. But it was a lot of peace of mind for for us as new parents. So much that we, I think she finally fell asleep one time when we got to, we got to eat at a restaurant. And that was a, that was a luxury for us because we hadn’t had that in years. But we she she knew she started to establish the reward system that if she did this, then she would get the reward. And that was that was a that was a milestone for us as parents, for sure.

Jamie:  20:28 

Imagine. Yes, yes. So the reward system worked really works really well for you.

Joe:  20:35 

We tried a lot of different a lot of different strategies. The tax system didn’t work so well. And the tax system is basically some a chart or magnets on a board that associated pictures with words. She She progressed really fast with her speech. So we kind of threw that out the window. We did give it a try it it associates visuals with words. And she’s she is a very visual person. But she progressed with our speech with different therapies such as music, and of course, language therapies. As she progressed with those, we she struck a chord with music, and we found a lot of ways to teach her things through through songs. And such as you know, when we finally got around to picking up her toys, we came up with a song about picking up her toys, and she has so to do associated with that very well pick that up.

Jamie:  21:37 

Wow, nice. Nice. So it sounds like we I refer to it as a visual scheduled. Did you you did that? Did you? Were you have a schedule of the day’s events?

Joe:  21:53 

You know, if it was that structured, she she was very high functioning. So a lot of those traditional therapies, we didn’t have to go through, okay. It came to the point where she did pick up social cues. And we we spoke to her and said, Okay, well, if you do this, then you’re going to get this. So we relied heavily on the reward system.

Jamie:  22:21 

Okay, so she, you just needed to prepare her for this month. So this is what we’re going to, this is what we’re going to do today, we’re going to go to the store, we’re and so you would just tell her like ahead of time, just to be prepared. This is this

Joe:  22:41 

is very much so thank you. That’s exactly what I was getting into. Okay.

Jamie:  22:44 

All right. Great. And then what about like, I know, we, we do a lot of like breathing techniques and things like that. Is that something that you worked with? Or, you know, just to kind of to regulate her emotion like, Okay, you’re, you’re going to your you’re going to have a meltdown?

Joe:  23:04 

Did you know actually, the teachers when she first started have meltdowns on the therapists that we were involved with, pretty much told her told us to, don’t make contact eye contact with her. Put her sometimes by herself, well, not so much by yourself, be within distance where she can see you. But don’t acknowledge her. Because acknowledge her, acknowledging her would just know, let her know that you see her crying and you see her asking for the intention. Don’t give her that attention. And just by doing that the tantrums minimized

Jamie:  23:49 

really, that must have been tough just to let her let her tantrum and to be there and not do anything that absolutely as a parent, I would think

Joe:  23:58 

No parent wants to see their child cry, but this was a different kind of crying which resulted in tantrums.

Jamie:  24:10 

So you’ve told us a little bit about as as Mari was younger? What it’s like living with a person with autism can you give us like a typical day of of living with with her now as an adult?

Joe:  24:28 

I can tell you now there are no tantrums. Living with Mari is so easy. She’s very easy going. Good to tell you that most days are I wouldn’t say boring. They’re just not as action packed as they used to be. Her normal day starts with her waking up making a herself some waffles. And I don’t see her a great part of the day because she’s She’s at school or in her classroom in your room. Unfortunately, I would have liked to have her had the full college experience, but because of our restrictions right now, it’s not possible. But basically, she just goes about her day she’s very well discuss his self discipline. She has been able to buy her books by herself online, she’s been able to register for classes. Oh, she does. He pays for her classes before I tell her listen, you don’t have to pay for your classes, I’m paying for a bit. She doesn’t have her own baby cow. She has her own debit card. Oh, she is great. There is a team that’s amazing. There’s much more to learn. There is definitely much more to learn. But I think we’re on a path to where I think she’s, she’s amazing. She sees discovered herself and she has her own identity. And she makes that known. You know, she’s, I’m sure when you interview her, she’ll, she’ll tell you all about herself. She’s, I’m looking forward very much on the path to where she’s gonna be okay. And I don’t have to worry about it.

Jamie:  26:14 

That has to be really a huge relief to you and your wife. It’s a partial relief.

Joe:  26:19 

It really is partial relief, I still have that. That worry as a parent, is anybody that a parent with autism would have? If she were did go out on her own? Is she going to be okay? I don’t know if we’re at that point yet because of the restrictions and, and what have you. But if she were to go out, I know she can handle herself on her own in a group of people with her friends. She does that. She goes to the mall with her friends. And she can do that all by herself. I have no worry there. I just worry about if she was to be by herself, which should be to the point where she could navigate herself around where she needed to go. Does she she knows how to take a bus. We haven’t discussed the routes that she would take to go somewhere. But she has done it before in the past.

Jamie:  27:15 

Okay. Well, that’s really good to be able to, to, to travel around the community is very important. Very important. So do you still have to when you’re going someplace new, do you have to kind of set her up to let her know what’s happening? Or is she able to function without you having you know, we’re going to someplace?

Joe:  27:43 

We don’t have to have an itinerary for the day. Okay. Basically, it starts off, hey, we’re going here do you want to go? And how often it’s 5050. If she wants to go? Yeah, everything is fine. She’ll ask a couple of questions, but that’s about it. If it’s somewhere new, she’ll ask a question. Such as you know, who’s going to be there? What are we going to do there? But that’s about it. That’s okay.

Jamie:  28:19 

That’s seems like typical teenage stuffs to me. Yeah, wanting to know, what’s going on what who’s going to be there? Is it going to be exciting? Yeah. Yeah. Nice. Very good. So, what has been your daughter’s biggest success? Or successes? Do you think

Joe:  28:45 

that’s gonna be? I don’t know if that’s gonna be a big question or a very detailed question. Just being herself and having it what’s what’s very striking to me, in the beginning, was her ability or ability to read with expression. And that was incredible. That was one of her. That’s one of her strong points. But she’s taken that to the point where she, I don’t know if she’s relied on that. But she’s taken that kind of confidence and become the person that she is today. She’s a proud person of the LGBTQ plus community. Where I find it. It’s amazing how a person with autism can can decide or make those kinds of decisions with her life. Where I thought it’s like autism. I don’t. I thought it was to the point where somebody couldn’t identify with herself and she’s proven me wrong there. You know, I don’t I didn’t necessarily put limits on her but for her to go and do something that that was mind blowing, because I didn’t think So without system had that capability. And she told me she wanted to go to a pride parade early on. And I said, okay, sure, why not? I took her and I don’t know if it was shortly before that, or shortly after that, where she told me her feelings about or her orientation. And I think that has been her biggest achievement by far. And the the ability to come up with a her self worth or self identity. That’s amazing to me.

Jamie:  30:35 

That is amazing. That is amazing. So you didn’t feel like she would have like sexual identity as an adult because of her Autism?

Joe:  30:45 

I am her Father! I don’t.

Jamie:  30:48 

Right. You don’t want to think about that kind of stuff.

Joe:  30:51 

I don’t want to hear it. But he heard and I listened. Yeah, so that was very important that I listened about that. But me being a father, no. Something like that. Should it remain in the closet, but Right. From my father’s point of view, I just felt like, you know why I’m the father. I’ll decide when you date and so on and so forth, in that sense.

Jamie:  31:17 

So you really, did you think she was never gonna date? You’re she’s just gonna be daddy’s little girl, though. Like, like every father Don’t

Joe:  31:29 

Of Course. It’s the way it is. But I look forward. I look forward to that. I do I actually do.

Jamie:  31:42 

Yes. So when she brings somebody home that she’s dating, you’re you look forward to that time when that happens, or has that already happened?

Joe:  31:49 

She’s brought people home and I don’t question. Okay. I think I think this is the opportunity to grow. You know, she’s, she’s brought people over for party. But I, I do in fact, let me let me rephrase that. I do ask questions. And I think it’s healthy to ask questions. to certain extent, I asked questions about all her friends and in their in their relationships. Yeah, because we talk about it very often. But when a new person comes over, I kind of step I take a step back, because I think that’s the opportunity opportunity for her to grow.

Jamie:  32:26 

Okay, so you’re you respect her privacy, basically, to

Joe:  32:30 

know I leave the room I leave the door open.

Jamie:  32:34 

Okay.

Joe:  32:38 

I will check in on somebody every once in a while.

Jamie:  32:44 

I meant to like, okay, is this a person of you know, a love interest? Is this just a friend? You know, that that kind of thing? That that’s the only one? That seems fair. Let’s see. Yeah. So, um, what would you like people in the community to know about autism and being a parent of a child with autism?

Joe:  33:17 

It’s not a death sentence. It’s not the death sentence that everybody thinks it is. I know, I thought about it. When I was younger, when I was younger, as a young parent, I thought this was it. It’s going to be my life just full of tantrums. The Tanda weed, I thought the tantrums would end. I thought she would have the mental capacity to only go so far. I consider myself very lucky. To to have a daughter that went this foreign is able to go farther. Not every parent has that opportunity. I know with certain degrees, certain degrees of severity on the spectrum. Not all of us are this lucky. I consider myself incredibly lucky that it went this far. I remember going to the therapy sessions with tons of mothers that would just bash the dads for for leaving them with with a child with autism. I was very often the only father that was there for for their child. And I don’t think I had I don’t think I had a um I don’t think I had the choice to leave. I didn’t want the choice to leave. I wanted to be there for her.

Jamie:  34:42 

that’s very sweet. She’s very lucky to have such a supportive father. That’s really great.

Joe:  34:49 

But she’s seen me cry right now. So that’s so yeah, what was the question again?

Jamie:  35:01 

It was, what would you like people in the community to know about autism? With autism?

Joe:  35:11 

I do think that they need to seek early intervention and therapy as soon as they see the signs, because I do believe just like everybody else that that getting the the therapy and and getting to work on your child is one of the most important things. As far as the vaccines skill, I don’t know what to think about that, that I don’t know that so much of a heart issue nowadays, when your kid has autism, I don’t really care how they got it. You know, I generally think from my standpoint that my child was born with it, there was no regression once a vaccine was administered or anything. I I had the problems from, from the get go, you know, from birth. Okay, things things happen right then and there. But, yeah, I think new parents just need to get to work on their child, and it is us it is a lot of work. It’s a lot more work. I don’t know, I didn’t know anything any better how it was taking care of a normal child. All I knew was how to raise a autistic child. So I don’t I can’t compare the two. I do have a typical child, a younger child. Okay, I’m just gonna compare to now. But at the time, I had nothing. I didn’t know that might. It’s funny, because I do not my typical child is more curious, was more curious than mine. My typical, I mean, my autistic child, because she wasn’t into the whole pure, pure play and stuff like that. She just wasn’t generally curious. But I think it’s important for new parents to know that kids, their kids should be curious and expose them to everything, whether you’re going to get a bad reaction to it or not.

Jamie:  37:20 

That’s really good advice. That’s really good advice. So what do you think the future looks like for you and your family now?

Joe:  37:33 

Oh, right now, I would I would like to think that she would. I know she wants to be independent. But being independent comes with a lot of preparation. So we’re, we’re in. We’re in the middle of that. I do think there’s a lot more to be done, where she’s not ready to drive a car. But it’s still still drive a go kart. Okay, that’s fun. It’s not always successful, but it’s fun. She can crash the car.

Jamie:  38:11 

Wearing a helmet.

Joe:  38:12 

Yeah, they have removed it removed her from the golf course only one. A little bit. It’s an experience. You know, it’s not everything is going to be a success. But she wanted she drove herself to do that. excuse the pun, but she wanted to do this and she wants if she wants to do something bad enough. She’s going to do it. She’s very determined. Oh, really? Oh, good. As much so yeah, it will take her wait a while to get to it. And she may not always express it. But when when she wants to do something, she’ll do it. So with that, I think that it’s important that I do not set boundaries on her. That she she should she should get very far in life. I do hope she gets a job, although I do want her to concentrate on her studying. And she has held the job before to school. Yes, in high school, there was a job program. And she she did her job. She found it boring. Once I said that’s okay.

Jamie:  39:27 

Early jobs are sometimes that Yes.

Joe:  39:30 

But she’s 10 She she’s very she’s very frugal. She doesn’t like to spend her money on a lot of things. But I think it’s I think she’s She set these things by herself. Those were not things that I taught her. These are just characteristics of herself. Yeah.

Jamie:   39:49 

Wow. She sounds like a perfect child to me. Very responsible. We’ll see. Especially for her age. That’s amazing.


                 

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