Autism and Occupational Therapy: Part 1

Episode 1 of a 2-part series exploring the impact of occupational therapy (OT) in the lives of individuals with autism.  Parent and autism professional Kaleen Schultz shares stories from her family’s journey with OT and highlights its benefits in the life of her teenage son. 

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Transcript

00:00:01 Johnandrew Slominski 

Welcome to this episode of the Autism Annex Podcast. I'm your host, Johnandrew Slominski. On today's episode, we begin a 2-part series on occupational therapy.  Joining me today is Kaleen Schultz, a training specialist with STAR Autism Support, a proud parent of three, and an experienced navigator of occupational therapy services for her son Dominic, who has autism. 

00:00:33 Johnandrew Slominski 

Good morning, Kaleen, and thanks for being on the podcast. 

00:00:37 Kaleen Schultz 

Good morning. How are you? 

00:00:39 Johnandrew Slominski 

Doing pretty well. How are you? 

00:00:41 Kaleen Schultz 

I'm well. 

00:00:43 Johnandrew Slominski 

Kaleen, I want to start by asking you about your journey into the special education field and especially about how your son Dominic was a big part of that. 

00:00:54 Kaleen Schultz 

I currently live in Minnesota with my husband and our three children and our middle child, Dom, is a child with autism, so he's really the reason that I got into special education to begin with. I was a pre-pharmacy major and when I was in the middle of that, Dominic was diagnosed with autism at the age of two and we live in a small town, so resources are really limited. 

00:01:24 Johnandrew Slominski 

So at this point you're in a small town in the Midwest, early 2000s, and the resources just aren't there. What do you do? 

00:01:34 Kaleen Schultz 

So, I was spending all of my time researching strategies and interventions for kids with autism. I was learning about autism in general and realized that I was getting a lot of knowledge that other families and parents and caregivers didn't necessarily have. And that was really a calling for me to switch majors and go into special education so that I could help other families who are going through the same things that we were. And with that I ended up getting my masters in special education. I received an autism certificate and then became a teacher and I worked in an elementary school and middle school as a special Ed teacher before I switched gears and became a STAR trainer a couple of years ago. 

00:02:30 Johnandrew Slominski 

Before we go much further, I want to say a big thank you to Dominic here.Even though we won't be hearing from him this time, we couldn't do the episode without him. So if you're listening, Dominic. Thank you. 

00:02:44 Johnandrew Slominski 

Kaleen, could you give us an introduction to two-year-old Dominic. 

00:02:50 Kaleen Schultz 

Yeah. So, when Dominic was first diagnosed, he was nonverbal. He was nonverbal until he was six years old. And I knew that early intervention was important for kids with autism. And sometimes that stressful for parents because you think, oh, if my child's this age I missed that early intervention piece, so I like to say that just interventions in general are important for kids with autism. So if it's early, great. If not, interventions are still going to make a huge difference. And so, one of the things that we needed to do for Dominic was get him into speech and occupational therapy when he was first diagnosed. 

00:03:32 Kaleen Schultz 

And so those were two main areas that were really important because he needed the language and the communication with speech. And then he needed sensory processing support. He was really dysregulated. And occupational therapy was something that we had done our research on and found to be important for kids with autism. And so, right around that age 2, we started to notice things like no language; he was behind developmentally at a lot of his well child checkups with sitting up and crawling and walking and those types of things. And then when that language didn't come, and we started to get a little bit concerned about OK, maybe there's something more going on here than just behind in those milestones. 

00:04:21 Kaleen Schultz 

And then we noticed the toe walking and lining things up and being really rigid, being dysregulated, things like that. And so, I didn't really know anything about autism. Somebody else had said, do you think he has autism? And I said, I don't really know. And I googled it, you know, looked it up. And I was like, yeah. He kind of checks all these boxes. And then you have to figure out how to help this little person. I really took it upon myself to make this promise to him that we would do everything that we could to make sure that he had services and supports in place so that he could live a really fulfilled life. And so, that was occupational therapy and speech therapy. 

00:05:08 Johnandrew Slominski 

Mhm. 

00:05:08 Kaleen Schultz 

But because we live in a small town, those services were not readily available, so the closest place that we could find a great program was 90 miles. So, every week we drove him to Sioux Falls 90 miles one way to receive speech and OT and he did that from the age of two until right before kindergarten. So then once he started school he switched to that educational speech and OT. And now he is 14 and he's homeschooled, and we're going back to that medical occupational therapy. So, starting those drives all over again, out to Sioux Falls to get him some new therapies and some new programs that we feel like he's in need of now. 

00:06:03 Johnandrew Slominski 

I want to ask you more about occupational therapy, but since you also mentioned homeschooling as somebody who was homeschooled, I'm always curious to learn more about that. What does that look like for Dominic? 

00:06:15 Kaleen Schultz 

Absolutely yeah. He uses the Links curriculum from STAR. And that's really geared towards the things that he needs. It's individualized, right, and that's what we look for when our students are in special education and receiving services, is that individualized programming and so links is fit to provide him lessons and supports that he needs and he loves it and he's a visual kiddo, so having all of those visual supports are really important to his success throughout the day. 

00:06:52 Johnandrew Slominski 

Let's talk a little bit more about Dominick's occupational therapy if we could. For those who aren't familiar, give us a glimpse into OT and maybe some of the things that have been helpful for Dom. 

00:07:06 Kaleen Schultz 

Yeah. So, when he was younger, he was doing medical OT, and that looks so much different than educational OT. Medically, he's working on things like, let's see when he was younger, they were working on getting dressed. So putting socks and shoes on, body regulation, so helping him identify his surroundings. He struggled with sensory processing overall, so a lot of desensitizing to different movements being on swings and slides and things like that and then helping him communicate with some of those sensory processing needs on what he liked and didn't like. 

00:07:53 Kaleen Schultz 

As he got into school, that OT was looking more like handwriting, fine motor skills, cutting, gluing, being able to walk up and down the stairs safely in the school. He loved OT when he was younger and then as he got older it got more challenging as his needs have changed and so now he's doing private OT and it's play-based, and he loves that and it's really something that I didn't know existed until recently and private practice OT allows those occupational therapists to truly individualize what they're doing so. 

00:08:39 Kaleen Schultz 

His OT now has a private practice and it looks like a giant play room with ball pits and trampolines and their bands and all these different things, but they're using really creative ways to engage students in play that's going to help their bodies feel good. And Dominic just started that. And I've never seen him laugh and smile so much in an OT session, so really warmed my heart to find something that was meant for him. 

00:09:17 Johnandrew Slominski 

And that's terrific that Dominic is finding joy in OT. And a quick note to listeners: be on the lookout for our next episode, which features my conversation with Dominic's own occupational therapist, Kristin Wittmayer. It's a great continuation of this topic, so be sure to stay tuned for that. 

00:09:39 Johnandrew Slominski 

In the meantime, Kaleen, OT for Dominic is very much play based and at the same time there's a wide variety of skills that he's working on, right? 

00:09:50 Kaleen Schultz 

They do work on being able to grip things, hold pencils, open containers, put things in and out, open packages pouring. They do work on some cooking-type skills, general safety, so, knowing that something is too high and you can't jump off of it. Kids with sensory processing have hyper and hypo sensitivities, so sounds might be too much for kids and they can hear every little thing that the average person you and I can't hear. So they can hear when the vents turn on and they can hear the clock ticking in the background. And when a pencil drops that sound is amplified for them. 

00:10:44 Kaleen Schultz 

And then you have other kiddos who are seeking that sensory input and so they can't get enough of the loud and they're holding the phone right up to their ear or the tablet up to their ear. And you're thinking, man, that's got to be loud in your ear, but it's helping them and feel good in a different way. And so, OT is able to help the kiddos so that they can have better attending skills, eye contact; they’re aware of their surroundings. A lot of those things that are just all-encompassing with having autism. 

00:11:21 Johnandrew Slominski 

I'm wondering: what are some of the differences that you and Dom have noticed since he started with OT. 

00:11:28 Kaleen Schultz 

Yeah. He's definitely regulated now compared to where he was when he was two years old. It was constant shrieking and vocalizations and moving when he was two years old, you couldn't take him to get his hair cut. You couldn't take him to the dentist and you couldn't clip the fingernails. Those things were so challenging for him, and so with occupational therapy and helping him regulate and then years of practice and preparation and experiences has finally got him to this place where he can do things that he was never able to do before. 

00:12:11 Kaleen Schultz 

And we used to have to hold him down to get his hair cut, and now he goes in, he sits in the chair, and we don't even need to be next to him. We can stay in the waiting room. And he can willingly go to the dentist and he can tell them what he likes and he doesn't like. It's not his favorite, but I don't know many of us that love going to the dentist. So that for him is huge. And I think day-to-day it's hard to see how much he's overcome, but when you look back from where he started and where he's at now, that would not be possible without those evidence-based practices. The STAR curriculum, the Links curriculum, social scripts and the occupational therapy, the speech therapy, the visual supports all of those things that we’re doing every single day. Looking back, it was definitely worth it. 

00:13:08 Johnandrew Slominski 

Kaleen, you mentioned social scripts as an evidence-based practice that's been really valuable for Dom. For those who aren't familiar with the idea of social scripts or social stories, what are they, and how have they been helpful for your family? 

00:13:25 Kaleen Schultz 

So a social story is a little story about something that's going to happen. And so I might say my child has a lot of stress and anxiety when they go to school, so I might give them a social story, and it's going to be a little booklet. It doesn't have to have pictures and be an actual handheld book. It can be just verbal. But I'm going to tell them what's going to happen, and I'm going to also honor how they feel. 

00:13:52 Kaleen Schultz 

And so, I'm not going to say, “You don't have to worry. It's not. It's not a big deal.” I am reassuring them that their feelings and their emotions surrounding that event are realistic and OK. And so it might sound like this. 

00:14:06 Kaleen Schultz 

In the morning, when you wake up, we're going to get dressed and when we get dressed, we're going to put on a T shirt and pants. Then we need to brush our teeth and eat breakfast. After that, we're going to get our socks and shoes on and we're going to get in mom’s car and we're going to drive to school. When we get to school, your teacher Mrs. Ramos is going to meet you at the front door and she's going to walk you to class. 

00:14:30 Kaleen Schultz 

That might be my social story that I tell my child every single day, so that they're knowing what's happening, and then I might add in things like I know that it's hard for you to go to school in the mornings, but Mrs. Ramos is going to have your favorite stuffy when she meets you at the door to help you feel safe. So they have something that they're going to look forward to, and I'm going to include that in there. 

00:14:55 Kaleen Schultz 

I'm going to reinforce them with things that they like for something that's difficult for them. And so we use social scripts and social stories. We've used them Dominic's whole life and we still use them today for things like when we're going to the dentist. It’s non-preferred, so we need to give some prep work in there. We need to tell him what's going to happen, what to expect, things like that, and something that I've learned a little bit later, and I wish I would have used it more when Dominic was younger was, I used to try to protect him from things that he didn't like. So, I would say, “We're going to go to the doctor. It won't hurt. It'll be OK.” because kids associate pain with the doctor, right? I go there when I'm sick or when I'm hurt and then they might give me a shot or I might have to get my blood drawn and so we tell them it's OK. It doesn't hurt. 

00:15:51 Kaleen Schultz 

But that's not true. It does hurt. It does hurt when you get a shot. Yeah. And so, when I tell him it's not going to hurt and then he goes and it actually does hurt, he's like, wait a second. You weren't honest with me here. And that created a lot of anxiety and stress because he didn't know what was true and what wasn't true. 

00:16:11 Kaleen Schultz 

So, we've started to add in the uncomfortable truths into his social stories to help him prepare for it, but reassuring him along the way, like it does hurt when you get a shot and it'll hurt for about 1/2 an hour, and your arm might be a little bit sore the next day. They can give you a Band-Aid if you don't want a Band-Aid, that's OK. They'll hold a piece of gauze on it. You know, we talk him through those pieces so that he can prepare. So those social stories really help him to know what's coming. And then it allows him the opportunity to ask questions. And we can add as much or as little information as we need to help him feel comfortable. 

00:16:54 Johnandrew Slominski 

So, when we're talking about helping Dominic to feel comfortable and empowered to navigate new situations, that's very much related to occupational therapy and sensory processing. Could you give a few examples of some sensory situations where OT can be particularly helpful? 

00:17:17 Kaleen Schultz 

So, I think looking at public outings and things that are new and different for kids with autism is challenging. So, when we think about going somewhere, we don't know who's going to be there, we don't know how many people are going to be there. 

00:17:37 Kaleen Schultz 

We don't know if the lights are going to bother our eyes or if there's going to be noises that hurt our ears. We don't know if there's going to be something scary. We don't know how long we're going to be there. Is there going to be food that I like or don't like? Are there going to be smells that make me feel like I'm going to be sick? And there's so many things in those outings that I think affect people with autism from a sensory standpoint. 

00:18:06 Kaleen Schultz 

And so, helping them to know what to expect to prepare for that and then also having a plan for when it's too much. And so, they look to us for that and we can use different tools and strategies to help them feel comfortable in those outings. From the sensory standpoint in that safety standpoint. 

00:18:29 Johnandrew Slominski 

When you started your search for occupational therapy for Dominic about 13 years ago, you found Kristin Wittmayer and she's been a very important connection for Dominic over the years. How have things changed since then, and what would you tell families who might be considering OT for their child? 

00:18:50 Kaleen Schultz 

When we started our search for occupational therapy, I wanted that person that had an understanding of autism. That was important because that's a big part of who Dominic is. And so I found a Children's Hospital that provided speech and OT for children with developmental disabilities. And Kristin was the first occupational therapist that Dominic went to when he was a toddler and it was her that helped us see the things that he needed from a sensory standpoint and really helped us get a better understanding of how to support him when we weren't at OT, how to support him at home, in preschool, and things like that. And she was collaborative. We could reach out, we could ask her questions, and she was always supportive of anything that we needed for him. And then when Dominic started kindergarten, he stopped going because he was in school and it was hard for him to miss school, to drive so far for OT. But Kristin since then has created her own private practice to be able to offer more services and more individualized occupational therapy to kids. And when I saw that, I thought, you know, now is a really great time to explore that because Dominic's home schooled. So he has the availability to drive 90 miles one way, which is a blessing. And I asked her if she was willing to work with him and if she works with teenagers because at the time she was working with young kids, and we talked about how her experience has changed over the last 10 years and the different trainings that she's done and that was important to me too that she really found it necessary to continue her education and explore new interventions and ways to help kids with autism and other disabilities in that field of OT. So, she's not using the same thing from 10 or 15 years ago. She's learned a lot of different ways to support kids. And so, we started that truck back out there for private practice OT and like I had mentioned, Dominic had that first session and I thought, you know, oh, he's not a fan of OT because it's hard now. And she told him right away, “This is not OT; we're going to play and we're going to have fun.” And she took that stress away and he was laughing and he was having fun. And there were things that were hard and he didn't struggle with it even though it was hard just because of the way that she was able to help him. 

00:21:36 Kaleen Schultz 

And I thought, you know, this is such a blessing. I am so glad that I did the research, and I took the time to find how she could connect with my son. Because there's probably a million amazing occupational therapists out there. But finding the ones that your kids connect with can really help accomplish so much in a small amount of time. I knew it was a great decision when we were at home yesterday and Dominic said to me, “Can we play the games that I played with Kristin?” And I thought, he has never asked me to do OT at home ever in his life. And so just that first session back and he's already wanting to do those things at home. So, she's definitely been a blessing for him. 

00:22:31 Johnandrew Slominski 

Kayleen, I want to thank you and Dominic for sharing your stories on the podcast. 

00:22:38 Kaleen Schultz 

It's my pleasure. I love sharing because if I can help one family feel content or feel like they're on the right track and that it's going to be OK. It's not an overnight process, but over time all those small things that you do every day really add up and showing families that journey piece. And to be able to support them along the way is part of my passion and it's been a pleasure to share all that with you. 

00:23:12 Johnandrew Slominski 

Our next episode continues the conversation around occupational therapy and autism. My guest will be occupational therapist Kristin Wittmayer. I hope you'll join us. Meanwhile, Kaleen and Dominic continue to commute to his OT sessions, 90 miles each way. He still loves it. The Autism Annex podcast was developed by STAR Autism Support. I’m  Johnandrew Slominski. Thanks as always for listening and until next time, take good care of yourself and one another.