Occupational Therapy
Show Notes for Embracing Autism Podcast — Ep. 107

Intro:
Lia: In this episode, we focus on what you can expect at occupational therapy and touch on the common reasons your child may be referred as well as discuss examples of activities your child may work on during their sessions.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support, while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia!

Matt: And I’m Matt!

Lia: And each week, we will discuss our journey of autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories. This is-

Lia & Matt: Embracing Autism!

Discussion
Lia: So I wanted to do an episode on occupational therapy as our first therapy that we are going to review because we actually found occupational therapy to be the most beneficial of all the therapies our children have done. Both of our girls were in occupational therapy for similar reasons, and also slightly different reasons. We mostly put them through it because they had fine motor delays, and one of our children had hypotonia, which is low muscle tone. So she needed it for that as well. And most importantly, I would say they went there primarily for sensory integration, right?

Matt: Yeah, I think it was a combination of what actually got us referred for our oldest daughter, I remember, she was having trouble. I think we first started with eating food, feeding therapy. And I think that’s what first got us kind of on the list to take part in OT.

Lia: Yeah, so OT is a common abbreviation for Occupational Therapy. And just in a little bit of a nutshell, Occupational Therapists essentially work with both children and adults that are autistic. And what they aim to do is help them better perform activities that are part of daily living and daily tasks. So they might work towards a bunch of different goals that are custom tailored to your child’s specific needs. And this could be something as basic as improving their handwriting to help them out in school, or some play skills to help them socialize with other children to things like sensory integration, which is what our children focus more on. And they also try to help the child improve their ability to participate in activities of daily life. So that might include anything from being able to complete their schoolwork or being able to brush their teeth, or tie their shoes or anything like that. They give a holistic approach to how to get your child to successfully go through life through various components. So including a little bit of gross motor, fine motor, sensory integration, and all sorts of things like that.

Matt: I would say it’s interesting, because it seems like OT is kind of an overview of a combination of multiple different therapies. So we would have components that would probably touch on physical therapy, as far as kind of working with, like the swing, for example, because our daughter had low muscle tone. So it kind of worked in a little bit focusing on some of the core in that component. It also touched on some of the speech components for speech therapy as far as having her requesting things as well. And then even I think we had thought about that it also brought in the floor time therapy as well. So it seems that it is kind of a broad overview, incorporating many different therapies. But then at the same time, it is very selective on individual components that are important for whatever your child is struggling with at the time.

Lia: Right. So what’s interesting about occupational therapy is, like you said, it does overlap a lot with other therapies. So it overlaps a little bit with speech therapy, it overlaps a little bit with physical therapy. And it overlaps with Floortime therapy, which is an alternative to ABA therapy. And the reason though, is because there are components that are similar, but OT tends to do a more laser focused assessment of that area. And it tends to be more specific to the sensory integration aspect of that thing. So for example, physical therapy; in physical therapy, they might focus more on gross motor activities, and they might put your kid on a swing, right. But in occupational therapy, they will also put your child on a swing. The difference between occupational and physical therapy, though, is that the occupational therapist is looking more for sensory regulation input or vestibular input, which is basically they’re putting your child on the swing to help them with their sensory integration. So if your child needs more sensory input, because they are under sensitive, they might put them on the swing to get that sensory input, whereas the physical therapists would put them on that swing to help them with like, for example, core muscle strength or something like that. So they do similar things, but they’re looking for a different outcome, if that makes sense.

Matt: Okay, yeah, that’s a good clarification there.

Lia: It gets tricky because they do do a lot of similar things. So in sensory, they also do some kind of core stabilizing activities. So one of the things that our child did is they had these little suction cups that you might use to pluck off of window. And they were working on fine motor skills. And so she was learning on doing the pincer grab to be able to grab it and pull off the suction cup from the window. But ironically, they also use the same thing in physical therapy, but for a different reason. So it does overlap.

Lia: So in occupational therapy, they have a bunch of different focuses, one of them for us was due to our first child’s hypotonia, which is low muscle tone, that results in weak muscles. And because of that, she had difficulty with body posture and being able to sit properly and things like that. She had difficulty feeding herself because she couldn’t quite work a spoon or utensil very well. So in occupational therapy, they were finding ways to help her accommodate and work more efficiently with being able to, for example, feed herself.

Matt: And I think it even went beyond that. So I mean, when we think about feeding ourselves, we must think of the, ‘Okay, can I use a spoon or fork or my hand to put the food in my mouth’. But even once the food is in your mouth, we still had the Occupational Therapist actually look at how she was actually chewing the food. From the very start, she preferred very soft foods that were kind of bland. And then even then, we weren’t really sure if she was using her kind of back molar, where her molars would be- to kind of chew the food. We thought she was just chewing with her front teeth. And we had to work with the occupational therapist to make sure that she was actually chewing a little bit tougher foods, like chicken nuggets for example, that she’s actually using her back teeth actually chew and grind the food a little bit better.

Lia: Yeah, we were having a hard time because she didn’t technically have the back teeth. So we don’t know…she was gumming her food. And that was something that we wouldn’t have caught if it wasn’t for Occupational Therapy. So the Occupational Therapists, they basically were able to see that she did in fact, have hypotonia. And they saw that it was actually affecting her ability to eat, because low muscle tone affects different parts of your body. And one of them was her jaw. And they said that they could kind of tell because she had kind of chubby cheeks on the lower jaw area, which meant that those muscles weren’t really being worked efficiently. And they found out that essentially, when she was trying to chew the harder foods, she had a harder time because her muscles weren’t able to do that as efficiently. So they gave us a bunch of tips, I remember one of the things that they said was getting her to chew on chewy tubes. And they were telling us to do like a daily activity at home, where you would take a chewy tube and get them to bite on it from left to right all the way across. And just get her to practice using those muscles in her mouth.

Matt: Right. And then even as far as her being able to use a utensil to feed herself, we were having trouble with that, because we would have a standard spoon that’s straight. And she wouldn’t understand if I turn the spoon, I can get it in my mouth instead of just smashing it into my face and having all the food fall off of it. So we had to work with her very slowly to transition as far as being able to turn the spoon. And we actually went out and had gotten some specialized spoons that you’re able to bend. So we’re able to bend them at a small angle, which allowed her to scoop the food and then she didn’t have to turn the spoon as far as she normally would with a regular spoon, she would only have to turn at a fraction of a degree. I’m not sure I don’t really explain that-

Lia: What it is, is I actually had the idea of the spoons, because I had seen them on Amazon at one point I thought it might work out. So what we did is we got these spoons that bend and because you can bend them in increments, you can essentially start with a very, like almost 45 degree angle bend and gradually straighten the utensil until she learns to turn it the proper direction. So the issue that she’s having and still continues to have to this day was a motor planning issue, which they also work on in occupational therapy. And the motor planning is basically having a difficulty in being able to initiate movements with your body. So it’s like you have the idea in your head, but you have a hard time initiating that movement. So in occupational therapy with the feeding therapy in particular, we were practicing on initiating that motor movement of picking up the spoon, scooping some rice in it, and then turning it and bring it towards your mouth. So if you think about that, for us, that’s really easy and kind of instinctive but it actually has a lot of steps. So we worked through the OT to gradually get her step by step to be able to do that. And now she eats with a spoon like a pro.

Matt: Right and I think the helpful transition that we started off with at first we would be feeding her with the spoon, then we’d be holding I think — what you hold her hand with the spoon?

Lia: Yeah, I think they call it fading.

Matt: Okay, right, and then you move your hand back. So you’re holding her forearm as she’s holding the spoon. And then finally, I think you’re at like elbow or something. So she’s doing the majority of the work and you’re just kind of guiding. And then from there, basically kind of a hands off, and then she’s kind of flying on her own like a baby bird.

Lia: Yeah, so that technique is used a lot in occupational therapy. It’s like a prompting, like a physical prompting to help them kind of get it going. And then you gradually fade out until they’re doing it on their own. So for her occupational therapy initially was mostly focused on feeding. But the feeding wasn’t just the fine motor skill, it wasn’t just like the motor planning issue. The other issue with the feeding for her was the sensory component, where she was very much focused on specific textures of foods that she could do. She really liked carbs and things that were kind of like plain or crunchy. So feeding therapy also integrates helping the children expand on that sensory aspect as well.

Matt: So it was interesting, because both of our kids actually had feeding concerns, but they were kind of drastically different. For her, it was kind of the bland foods, and she didn’t want really much kind of exploring new flavors and things. And then for other ones, she didn’t want solid food for the longest time. And I remember it was quite a struggle just to get her to try and eat anything — it was very limited. But it’s just interesting, because each of the occupational therapies is tailored very specifically to the individual child. And it’s not just the standard ‘okay, let’s go on a swing. And let’s see how things go’. It’s granular, they’re looking at the very specific struggle that your child has, and working with them on that, which I thought was fantastic.

Lia: Yeah, that’s one of the reasons why OT is one of my favorite therapies, because both of our children went to occupational therapy. But they both had completely different sensory profiles initially. Now, they kind of overlap, but initially, they were very different. So our second child, she also went to feeding therapy with an occupational therapist, but it was for very different reasons. She didn’t have any sort of fine motor control issues at all. But she was essentially refusing to eat solid foods. So she was on baby food purees for gosh, almost two years. She was basically two; she was eating baby food, basically, up until like, early two year old. And so we were working with occupational therapists, mostly with her to get her comfortable with trying different textures of foods. So we weren’t even worried about the flavors, because it didn’t seem like she had issues with flavors. But she had issues with textures.

Matt: Right. And I mean, that just kind of shows you that it goes beyond just the concept of the physical component of feeding yourself. It also goes to Okay, the sensory versus a puree versus an actual food that you actually have to chew for our other daughter who’s focused on the flavor of the food, but it’s actual food. So it’s just kind of interesting to see how the sensory component kind of plays a factor there.

Lia: Yeah. And the other interesting cross comparison is that our first child had hypotonia. But our second child did not. Our second child actually was gross motor advanced, she actually started walking at nine months old, I think. So she didn’t have any of those issues. But the other thing that we noticed that was also kind of opposite that was worked on in therapy was also their reactions to water. So like our first child, she was a huge water-baby. I mean, it was to the point where she’s the type of autistic child that you really have to watch around bodies of water, because she’ll run straight to it, she’ll go into the beach or the ocean, completely disregarding any danger. But our other child was terrified of water. And we we didn’t really know it until that one day where she accidentally spilled a cup of water on herself.

Matt: Right. And I don’t think it actually clicked that day, either that that’s what the situation was. She had picked up a glass of, I think ice water that you were drinking or I was drinking, and she accidentally tried to drink it herself and spilled it on her entire front. And she just froze like a deer in headlights. And we thought it was just she was just shocked that she had spilled the water. But I think it took a little while for us to realize it was the water and not necessarily that she was just in shock. It was she was just terrified of water.

Lia: Yeah. So at our last place, we had a shower that didn’t have a bath. So we had to have her take showers essentially. And I remember the bottom of that shower had a pebble floor. And because it had a pebble floor, it was really bumpy and honestly I didn’t even like it. So when she went in there, she would kind of walk with her hands up, look down on the floor and just kind of freeze when we would give her a bath/shower. And I always thought that it was just the textures of the rock that she wasn’t liking. So when we moved to a new place, and we no longer had that texture, we had a standard smooth textured tub. I was really surprised when we then tried to give her a bath there. And she was in like full blown panic. Like she, as soon as she heard the water rushing into the bathtub, she would be climbing us and trying to climb out, she’d be freaking out like she did not want to touch the water at all.

Matt: Right? I remember it took at least a couple of months working with the Occupational Therapist kind of slowly transitioning, kind of changing one element of bath time until she was actually sitting in the bath and didn’t have any trouble from there. But remember, it’s a very slow approach. It’s first you’re getting her in the bathtub without any water, just to kind of get used to ‘Okay, this is the dimensions of the bathtub. And this is how everything works.’ And then slowly getting her exposed to ‘Okay, this is water, it’s safe.’ We actually found out that we had to I think — what, change the temperature?

Lia: We had to make it lukewarm. So it wasn’t either hot or cold. She just wanted lukewarm.

Matt: And then the other component was she would be taking bath time with her sister and her sister loves water, so she’d be splashing. So we had to remove her sister until we kind of got her used to just being in the bath on her own. And I just remember, it was very baby steps until she’s actually able to be in the bathtub. And I mean, now thankfully, I was laughing the other day, when we were giving them a bath. They’re both in the bathtub kind of lying down.

Lia: Yeah she goes nuts now.

Matt: Yeah. So I mean, thankfully, we were able to get over that hurdle. And I mean, thankfully, she’s okay with doing bath time with her sister. So we kind of were able to get over that.

Lia: And that is why we are such huge fans of occupational therapy because with our kids, they went into occupational therapy having pretty significant issues. I mean, they weren’t eating, we couldn’t get them to do any sort of fine motor type of tasks correctly, we couldn’t get them into the bathtub, at least for the younger one. With the older one, we couldn’t get her away from water. So it was dangerous. They were both elopers, we had all these issues that for the most part have been primarily resolved. They still go to occupational therapy, because they still have ongoing issues. And I know the Occupational Therapist said that for the youngest one, her sensory needs are so extreme that it seems like she might need OT for a large portion of her life. But just the progress that we’ve seen so far that now she goes from terrified from the bath to being able to do it. It’s been a great help for us. But the one thing that I did learn from occupational therapy is you really need to be patient about it. Because for example, the water thing, it took us at least a month, if not a month and a half of slow starting off giving a bath with no water and just using baby wipes while she’s in the bath, to get her used to the tub to then adding toys to then adding a fraction of water just to get wet and just gradually increasing the water over time to get used to it. So it’s not like a quick overnight fix.

Matt: I think that honestly, the thing that I love about our particular occupational therapist is she’s very playful with the the new thing that she’s trying to expose her to. So she was giving us advice because when she was playing in the rain, she’d freeze and be terrified and not move, she’d just stand still in the rain as rain is pouring down on her. And she was giving advice as far as how to get her to be comfortable with the rain. So she would say okay, take her out with like an umbrella, and then kind of move the umbrella and kind of say, ‘oh, we’re getting wet and move the umbrella back’. So you turn it into a fun experience that you show her you’re perfectly safe. I’m taking care of you I am well aware that it’s raining out. I know there’s sounds that might be scary that you’re not used to the loud sound of the rain, I am just kind of doing it in a playful way. And I think we’ve seen kind of throughout the process that any new experience that we’re trying to expose her to, she is doing it in kind of a playful way. So our daughter is kind of interested or she’s, she’s curious, at least I would say at least to try the new exposure just a little bit and then keep going from there.

Lia: Yeah, and a good OT will gamify therapy with your child. They’ll make it fun. They’ll make it light hearted, and they will let your child lead. That’s why we mentioned Floortime. A lot of occupational therapists are trained in the floortime method, which is, again, our preferred alternative to ABA therapy. And it’s basically kind of like a child led therapy. So it means that the occupational therapist is not forcing your child to do anything that your child doesn’t want to do. There’s no drilling, nothing like that. They kind of just feel out what your child likes and if your child is attracted to a particular toy or anything like that, they’ll just use that moment as an opportunity to teach something to your child or help them with a certain task. They don’t ever tell the child what to do. They just give them a bunch of options and whatever the child chooses is where they add. So that was one of the reasons I really liked that.

Matt: And I think it’s an ongoing therapy for them basically, just because I mean, yes, we were able to get over a few obstacles that we’ve been struggling with as far as the food and the water. But I mean, we’re still working with our occupational therapists for our youngest one as far as putting on and taking off shoes, socks, kind of getting dressed. And I mean, I think even for the older kids, it would still play a relevant role in a day to day life exposure.

Lia: Yeah, so some possible goals that they might do in occupational therapy, they range from things like academic goals. And these can be things like how to use scissors properly, how to print letters legibly for your homework assignments, how to use a paintbrush correctly, so that you can participate in art class in school, to things that are more like daily living. So that’s more like how to brush your teeth independently or button, your jacket, how to zip up your coat or tie your shoes to be able to do it on your own without support. But the third area that people don’t think about either is social functioning. So some of the things that they help or focus on is some autistic children lack imitative skills, which means usually a baby has like mirror neurons, which means like they mimic what they see. So when you’re doing a social interaction, a lot of children will learn just by watching their parents or siblings do something, and then they’ll mimic that that’s something that tends to be lacking in autism. So in occupational therapy, that might help children learn play skills and other skills that normally a child doesn’t have to be taught, they just learn. But again, since that’s difficult for the autistic child, they might get that through occupational therapy. And the other thing that they do is help children engage in socialization by teaching them how to engage in physical play activities in group settings. So it’s not social in the sense that they teach them how to communicate with another child specifically, but they teach them things like, ‘Oh, this is how you play, throw and catch’. Or ‘this is how you jump on a trampoline’, or ‘this is how you use a swing independently’. That way, they are capable of going out to your local playground, and they can play with other kids, because they can do all those things independently.

Matt: And I guess I felt that when I learned that I kind of felt dumb, because I always thought, okay, socialization, are you able to talk to another kid? And that’s kind of it. And then I was thinking it was like, Oh, no, okay. I mean, if a kid invites you to go on the merry-go-round, for example, and you can’t, because you lack the various components of sensory components to being able to climb onto the merry-go-round, hold on and be okay, spinning around, then you’re not able to socialize in the same way that a peer might want you to; I mean, it’s the same thing. When we go to the park we’re kind of on top of our girls — because they have struggles with spatial awareness and their judgment might be a little off — making sure that they’re not falling off of the playground getting hurt. We have to make sure that they see that there’s a step down, and that they actually are stepping down holding a railing or something. So it is very helpful to know that that is one of the areas that they focus on moving forward.

Lia: Yeah, actually, that’s great that you mentioned that because that’s another fantastic thing that we’ve gotten from OT is they do work specifically on spatial awareness and coordination. And they will do it in specific contexts that are relevant to your child like playing on a playground, how to work on spatial awareness while swinging or while climbing. And when they do that, they actually give you a little bit of bonus physical therapy in there by accident, just because you kind of have to have physical work when you’re climbing things. But they also work on emotional cognitive skills in the sense that they’re trying to train your brain to be aware of your spatial surroundings. So like one example is like our kid, we initially brought her to the playground one time, and her spatial awareness was so off, that when she went running down the playground equipment, there’s actually a part of the playground that is like the gym that’s actually opened, because there’s like, some sort of climbing equipment there that kids use. But she didn’t realize that it was open. So she just kept running and just kind of fell right off. And it seems obvious to somebody like, ‘oh, there’s a giant gap here. Obviously, you’re gonna fall if you go through it’, but she had no sense of spatial awareness. So she just kept going with the faith that something would be there to catch her.

Matt: And I remember both my parents had gone with me to the park with the two girls. And I remember them not thinking about it at first, but then they became ultimately terrified because — and they told me later — they were saying that she wasn’t noticing that there were openings that she could easily fall out of. So they became — I mean, they were going to the park similar to how they would with me when I was younger — and then they realized like, ‘Oh, no, okay, I need to make sure I’m actually paying attention to where all the different openings of the playground are’. If you’re going on an elevated ramp, for example, making sure that you don’t fall off. So I mean, it is just another element to just consider if you’re with people who don’t necessarily live that on a day to day that they are aware that this is a struggle that some children need to work on.

Lia: Yes. So that’s definitely something that our eyes were opened to during occupational therapy. And then some of the ways that they might help your specific child out as well can be simple things like helping your child strengthen their hands, their legs, their core, they might do this through different activities that they have for your child that will focus on these areas, they might provide your child with tools that can help them like weighted vests, or let’s say they need like a larger pencil to help accommodate while they work on the fine motor skill. They might do some techniques or give some sort of assistive devices to help lift, focus and make tasks just generally easier. There’s also some occupational therapists that will work directly with parents, that was something that we got to do our program that was extremely beneficial, because the OT would work directly with us, and then show us exactly how we can continue the therapy that’s in the clinic and practice that at home so that we could continue working with our child.

Matt: Yeah, I think it was big and actually, I think it went even beyond the OT. I think if you have a good therapist, and they realize, the point of the therapy isn’t just ‘oh, I want to take your money for the hour that you’re in the session, and then come back and get the therapy next week’ that they actually bring you in and actually show you the different techniques so you are able to continue the therapy outside of it. So you think about Okay, if I have therapy once a week for an hour, versus if I’m basically living therapy every single day, because my parents know how to work with me, because they learned the different tasks I’m working on in therapy, you’re going to cover much more ground just naturally.

Lia: Yeah. So like that was super beneficial to us. And then the biggest thing that I think that we got from there was a really good understanding of the sensory system and sensory integration. They taught us a lot of techniques that were relevant to our specific children. So if they were hypersensitive, or hypo sensitive, which is basically over or under reactive to certain set sensory input, they taught us how to handle it. So things like swinging, brushing, jumping, pushing, squeezing, rolling them on the ground, or slowly exposing them to different sounds like whistles and things like that, we were taught all these techniques to help for things like my child spinning in circles all the time and needing to crash into the couch all the time. They gave us techniques to be able to minimize the spinning because she was getting hurt. So it was really important for us to get all those techniques, especially with our second child who is extremely hyperactive to help her get the sensory input that she needed. And now she’s much calmer, because she knows how to get that input.

Matt: I think it was a real game changer because I don’t have a problem as far as stimming. But when it becomes dangerous, and you’re worried about them getting hurt when they are like our youngest daughter spinning around or just running and falling on the ground or running into objects, I mean, that might not be soft. It kind of takes it to another level. And you you have to think okay, how can I use her stimming in a way that won’t get her hurt? And that kind of touched on, I think, was it called heavy work?

Lia: Yeah, heavy work.

Matt: That we had kind of worked with our occupational therapist on as far as trying to get her to do, I guess work in a way that slows down her motion. So she’s actually doing something that causes a lot or takes a lot of energy to do at a slow pace. I’m not sure-

Lia: Yeah, yeah, no, that’s good. It’s like putting books in a basket and having her push it because she would have to exert a lot of energy to push heavy, you know, well, heavy to her. It’s not very heavy to us, because it’s for a toddler, she would have to exert a lot of energy to do that task. So it’s called heavy work, because it helps her do that. So one of the things we did is like we have this spinning Lazy Boy. And I mean, it’s really not that heavy, but for a two year old, just pushing it to spin it. That was perfect for her because she got both the spinning sensation and the heavy work, and it would calm her down so she wouldn’t be running around and falling. And one of the major things that OT helped us with this was actually her head banging behavior. So she used to head bang and we were really worried about it because we couldn’t really stop it. And we realized that it was happening at night. So we weren’t even aware of it until we caught it on camera one time. And we learned that essentially it was sensory seeking behavior and through OT and the tools that they gave us we were able to address it. So techniques they told us were put tight fitting clothes on her put like a little hoodie on her head or like little cap, give her socks, give her mittens give her sensory input during bedtime and put like pillows around her bumpers, things like that. So that when she’s in bed, she has sensory input and doesn’t go seeking it through head banging. And as soon as we did that, it stopped. Like, it took a little bit of a transition time where she was doing a little bit here and there. But eventually, it just completely stopped.

Matt: And I think even somewhat recently, as well, we actually moved like a little bouncy horse into her room. So at night, if she still if she wakes up in the middle of the night, we noticed that she would be crying and calling out for us because she wanted to be like rocked in a rocking chair. And it would be like midnight, one in the morning. And we were working with our occupational therapist, because we’re like, she’ll wake up and be crying for 20 minutes, half an hour, just straight, just requesting to be rocked. And so she had recommended, because she knew that we had a little bouncy horse, to move that into her room. And we also moved a little plastic slide in her room as well. And we noticed that sometimes when she wakes up during the night, she might get out of her little bed, she’ll bounce on the horse a little bit, but she’s tired. So she’ll kind of just fall asleep right on the pillows on the floor right there.

Lia: Right. So the key was us providing her with alternative avenues to get the sensory needs met, without her needing to have me go in there and bring her to a rocking chair, rock her and give her that sensory input. So by putting the bouncy horse, the slide and this little rocking boat that we had in her room, she was able to learn to self regulate. And these are things that the occupational therapist will work with you and your child to give you techniques on how to specifically tailor those to your child’s. So with that said, again, we think occupational therapy for us specifically was probably the most beneficial, but we will talk about the PT and ABA therapy in future episodes as well, because we do think it’s important to talk about different ones. But we started off with this one because it was definitely, in our opinion the most-

Matt: It’s the MacGyver of therapies.

Lia: Yeah, it’s like the most beneficial, so highly, highly, highly recommend occupational therapy, if you feel like your child needs it or would benefit from it.

Outro
Lia: To recap, in this episode, we discuss various skills your child may work on in occupational therapy to include heavy work feeding therapy, sensory regulation, and particular problem areas, such as head banging. If you think your child may benefit for Occupational Therapy, contact one near you.

Lia: Thanks for listening to Embracing Autism. Join us next time when we discuss physical therapy and answer questions such as ‘How can my child benefit from physical therapy?’ ‘What are some common activities my child may be asked to perform?’ and ‘What are some potential goals?’ This has been Embracing Autism.

Finding the Balance
Show Notes for Embracing Autism Podcast — Ep. 106

Intro:
Lia: In this episode, we discuss the various therapies your child may be referred to after an autism diagnosis, and give tips on how to manage your schedule, as well as what to do if your child appears to hate going to therapy.

Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder. I’m Lia!

Matt: And I’m Matt!

Lia: And each week we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources, and sharing our personal stories. This is-

Lia & Matt: Embracing Autism!

Discussion
Matt: After diagnosis, your child may have been referred to multiple therapies. The most common therapies that you’ll encounter are Physical Therapy, Occupational Therapy, Speech Therapy, and Applied Behavioral Analysis. Now for physical therapy, it’s commonly referred to as PT. This typically focuses on gross motor skills. You might seek out a physical therapist if your child is having trouble going up the stairs, and you need additional support with that. Occupational therapy, commonly referred to as OT, focuses on fine motor and sensory-related target areas. This might be if your child struggles with using utensils, for example. Speech therapy, also called ST, is the focus of speech and language development, teaching communication skills for both verbal and nonverbal, and this might be if your child is having trouble with pronunciation for example. And the final therapy that you might encounter is applied behavioral analysis commonly referred to as ABA. This uses positive reinforcement, strategy, and antecedent behavior and consequences — commonly referred to as ABA technique — to address behavioral struggles.

Lia: That’s just some very basic information about those therapies, we will actually go into more detail about physical therapy, occupational therapy, speech therapy, and ABA in the next few episodes. So if you tune in, we’ll actually give you very detailed examples of what happens during those sessions. But for this episode, we’re just going to keep it a little light and just mention that those are in fact the most commonly prescribed or referred to therapies for autistic children. Usually, we’ll get this referral from either a primary care physician if they’ve noticed that there’s some sort of developmental delay during the milestone checkup. Or you may be referred by your developmental pediatrician who diagnosed your child, if, for example, they were evaluated by an occupational therapist who may have noticed some sort of delay, and then referred you to, for example, occupational therapy. There’s a lot of different ways your child can end up getting this referral, but these are just the most commonly prescribed therapies.

Lia: Now since we will be talking about those things in future episodes, for this episode, we want to focus a little more heavily on scheduling. There’s a lot of common issues that arise with scheduling these appointments and therapies for our kids and we just want to talk about the things that come up the most for us and things I have heard other parents have difficulties and struggles with, and we want to see what we can do to give you guys the best advice and suggestions that we have from our personal experience. Now, probably the biggest complaint that I’ve heard among parents who are struggling to schedule therapies for their children is really the work-life family balance. Most people were saying it was really difficult to get their child to therapy appointments and it was really difficult to make time to go and get them the help that they needed, because they are full-time workers, or they have a really rigid work schedule. And it was kind of difficult to put those appointments in time slots that they would be available to take their kid.

Matt: Yeah, Lia and I found ourselves in this boat multiple times. I think during the peak therapy sessions, it was around four therapy’s a week. During this time, we were both working full time. So we kind of had to divvy it up a little bit as far as who was taking our daughter to what therapy on what day and kind of doing a little bit of tag-team work there. For my job, I was working remotely at the time. So I think on one of the days, we had scheduled physical therapy the same day that we had speech therapy. So I would run our daughter down for her physical therapy. And then I would race home because she would also have speech therapy later in that afternoon, where Lia was waiting at home to take the reins essentially, as soon as we got home with the speech therapy. And if I was late, of course, she would start the speech therapy without me. So for us, it’s really kind of working off of each other’s schedules and trying to find the best solution possible.

Lia: One of the issues that we were having was that when we were scheduling appointments, a lot of the appointment slots were very limited. So we had a choice of maybe two or three appointment slots that we could pick from and when we went to schedule those appointments, we had to make sure that they didn’t conflict with the other appointments. But on top of that, we had to make sure it didn’t conflict with our work schedule. So what I did is luckily at my job, I have two days a week that are dedicated to telework at home. So I tried to make it so that all of my appointments were scheduled on the days that I was teleworking. And then what we did is we split it up so that Matt would take her to one appointment and then while he was doing that, I would be able to set up at home because we were doing a telehealth appointment. And that would get it already so that by the time they got home, I was already situated with the telehealth appointment. And we could just switch straight to that. Now prior to telehealth appointments, because that was just during COVID, we did have some appointments that were back to back physically; what I did with those is I made sure that they were located really close to each other. So one of them was occupational therapy that she had across the street from where her physical therapy session was. And then I called ahead with a physical therapist and let them know that she would probably end up being like 10 minutes late to each of these sessions because that appointment started right after the first appointment ended. And if you talk to your therapist, though, most of these appointments are actually 45 minutes long, but they just build them in for an hour. So they were totally cool with that because they’re saying we don’t use the full hour anyway. So if you’re 10-15 minutes late, it’s not a big deal, as long as you clear it with a therapist in advance. So go ahead and talk to your therapist and see what kind of flexibility they may have. They may be more willing to adjust things than others who really knows until you talk to them. But for us specifically, that was one of the things that we ended up having to do.

Matt: Another approach that you can do is possibly flex hours if it’s acceptable with your employer. I used to be working remote, in which case I would just block out time to take my daughter to physical therapy on the one day a week that it was. This just meant I would work later in the evening and be able to make up my hours at the end of the week. So thankfully, if you’re working remote, you have much more flexibility or should hopefully have much more flexibility with the therapies and schedules. However, right now I’ve transitioned out of that work and I’m in an actual more rigid work environment where I have to be on-site every day. Now, this has created additional complications for us, I was able to talk to my employer and take an earlier shift. So I start very early in the morning, and I get out by around mid-afternoon. So this slightly helps Lia a little bit with trying to get the schedules situated, it’s not as helpful as when I was completely remote, but at least that is one area that I am able to try and modify my schedule to try and accommodate the work life balance as best as possible.

Lia: Another thing that I’ve seen some offices do, but not all offices, is offer evening hours or very early hours that are prior to your typical nine to five job. If you take a look at the schedules at different therapists’ offices, you can talk to them and see what kind of hours they have and if they do offer any of these extended hours. If they do, I would definitely opt for that option rather than going to one that doesn’t offer it.

Matt: As a last resort, you could try and use sick leave for these appointments. However, I think that this should absolutely be a last resort because most employers only have a very small amount of days that you can actually use for sick leave. And even if you start diving into vacation, you’re going to burn through these days very quickly because the therapy starts to stack up really quickly and you might be spending all your leave on just the therapies alone.

Lia: Additionally, if sick leave isn’t an option for you — because I know that’s very difficult for some people to get — there are typically some options with FMLA intermittent leave; this is actually something that I had discussed with my boss as well. So FMLA is the Family Medical Leave Act, and it usually entitles you to leave — it’s typically leave without pay — but it gives you job security. So you can’t get let go of your job while you’re taking leave and you can stack it with things like sick leave or vacation to get paid. So the FMLA, the intermittent style, basically makes it so that you don’t have to use the leave all in one giant chunk — you can use it intermittently. So you can use it basically here and there whenever it’s needed for therapy appointments. That may be an option that you want to discuss with your employer and see if it’s an option. I know technically it’s an option for me, but the reason I decided against it was that you do tend to lose some benefits at work and again, you won’t get your full salary. So it’s not really the best-case scenario. But if you are worried about losing your job and you’re desperate and you need to get these therapies, it is at least an option to consider.

Lia: Another thing I want to mention is what you end up doing really depends on whether you’re a single-income household or a dual-income household as well as whether or not you’re a single parent or a dual-parent household. If you are in a dual-income household, one option that you have that a lot of people actually do take is unfortunately for one of you to stay at home and help your child with all the therapy sessions and then the other one continues to work, that is an option though I know again it’s a difficult decision to make. On our end here, it is actually a goal of ours. Currently, we are dual-income full-time working parents; However, our goal is to ultimately be able to transition to a single-income household so that I can take care of all the appointments and everything that needs to be done. One of the things that you can do like us to try to get to that goal is see if you can find a way to apply to jobs that you can make a little more income to make up for some of that loss. Typically raises don’t go very far, but if you apply to a new job, it’s a lot easier to give yourself a raise by putting in for a higher salary when you move to that job. So it’s kind of like a system cheat that nobody really knows about. But it’s another option to try to do something like that.

Lia: Now, for the single-parent household, it can get a little more complicated, because you may not have that partner to rely on. If you do have that partner to rely on, definitely go for that. Otherwise, you can try to connect with your local community. So maybe with your local church system, if you have any cousins or aunts nearby, or if your mother happens to be nearby, there’s any family or friends available, who might be willing to help you out during that time and see if they are able to bring your child to the appointments. This is something that you will have to grant specific permission to at the facility. So if you have somebody other than the parent, bring the child to therapy appointments, you’re going to have to fill out an authorization form at each clinic. And typically, you’re gonna have to make sure you renew that every six months or so. But it is an option, you can actually have someone else bring your child to the therapies as long as you, of course, trust them, and you have them authorized through the medical facility.

Lia: Kind of along the same lines I’ve seen a lot of parents struggle with how do I bring my kids to therapy, if I have another kid, I don’t know what to do with them. That can be a little bit complex as well. I struggle with that myself, because I have two children who both go to therapies, but they don’t go to therapies together. So I typically have to handle that on my own. There’s a couple of things that I’ve done. Sometimes I will leave one of the kids with my mother who will watch them during the appointments. And sometimes I will honestly bring both of them. And while I drop one off at therapy, I have the other one with me in the car, we go for a little drive, or I might take her out for ice cream or something like that while the other kid is in the appointment. Now if it’s an appointment that you need to be physically present for, some therapists will on occasion, but not regularly, allow you to bring the other sibling in so long as it doesn’t distract your child. I have had some luck with that but I know not all therapists do this. So you’ll have to speak with your therapist specifically and see if that’s something they’re okay with or not. Another thing that you could potentially look into is to see if the local area has some sort of temporary babysitting service in local churches or things like that. I know where I’m at there actually is a local church that does kind of a mom’s day out random drop in for childcare, and they will watch your kid for really low cost while you’re doing whatever you need to do, whether that’s errands or whatever it is, the whole point of it is to help you out while you’re doing those things. So again, check out your local community and see if there are any resources like that they’re available to you.

Matt: And you might have more luck with your boss approving your schedule or a person watching your child on a regular basis if you have a consistent time slot for your appointments. What I’ve done is each week that I would have the physical therapy appointments with my daughter is I would also schedule a month or two in advance. So every Tuesday, for example, at one o’clock I would have my appointment with my therapist. So I could tell my boss that I need to block off this time every Tuesday. I feel like most employers are more willing to make that accommodation. And if you need babysitting, at least it’s at a set time, which would hopefully be easier to accommodate.

Lia: I also tended to schedule near the one o’clock time and I did that specifically because it is close to the lunch hour break. So that’s another technique you can do is keep it close to your lunch hour breaks so that you can include that as part of your time that you need to commute to and from the appointment. Or if you want to include your break, essentially, as part of the time that you’re using for therapy, if your employer lets you do that, I would. I would definitely take advantage of that and just say, you know, I’m going to skip lunch and use that time for the appointment instead. Another thing to consider when you’re scheduling these time slots — so Matt mentioned getting a time slot that’s consistent. So for example, a one o’clock slot, I know I always have therapy at one o’clock on Tuesdays. That’s a really good technique, but you want to also consider your child’s age and whether or not they’re taking naps or whether or not your child, if they’re an older kid, has some sort of specific need at that time that you might be interrupting. So for example, if you have a kid who is really determined to have their Nintendo Switch time at 11:30 every day because that’s their routine and they’re used to it, then you may not want to schedule a therapy appointment at that time because he’s probably not going to be cooperative during the session and he’s probably gonna have a meltdown or be really upset because you disturbed the routine. It’s the same thing with naps. If you have a kid who is on the younger side of things, and they’re still napping like ours were, you really want to be careful about the time you pick for therapies. I know for us when we first did our therapies, it was kind of a ‘you get what you get’. So we took the time slot that was available to us and our child initially struggled a lot. She would kind of just lay down on the floor during physical therapy and she wouldn’t move around. She didn’t want to participate in something — she started crying. And we knew it wasn’t because she didn’t want to do the activities it was just because she was overtired. Once we switched her schedule to align better to her nap time, she actually thrived in physical therapy, she absolutely loved going, she got along great with a therapist, and actually ended up graduating out of the program. So that’s definitely something that can make or break it, I would definitely take into consideration your specific child’s needs for scheduling and try to accommodate as best as possible.

Matt: Now, we’ve been talking primarily if your child has a little bit younger, but if your child is already in the school system, they’re also able to get the therapies given to them while in the regular school day, which wouldn’t disrupt your work schedule. So they’d be able to get the physical therapy, speech therapy, occupational therapy in the school, and it shouldn’t hopefully disrupt your schedule.

Lia: Yeah, the school system will typically already have those therapists available there for you as part of your accommodations if you have an IEP plan and those accommodations, that should be included. But it kind of depends on their specific evaluation of your child and whether they find it necessary for your child. So I’m not 100 percent sure what you would get, it would depend really on that analysis. And it may not agree with what your developmental pediatrician said, because their analysis is a separate one. And they don’t go by your pediatrician, they go by their personal assessments. But it is something you can try and it is during the workday so it wouldn’t affect you whatsoever and it would just be while they’re at school. Now that is also something that applies with ABA facilities. Although personally, I am not someone who does ABA therapy — and I’ll talk more about that in the ABA episode — it is something that is available at schools because the ABA therapists will typically come to the school and they will do it in that way. Sometimes they’ll pull your kid out, or they might be involved in the school itself while your kid is in class. Different places do it differently but that is another type of therapy that goes to the school as well as the home. So there are options there.

Matt: Now, if you’ve already tried some of the things we’ve mentioned, as far as trying to flex your time at work, trying to shift to a fully remote job, finding family friends to take any child to therapy or babysitting, and it still doesn’t work, another approach that you can try is to see which therapy is most critical and what therapies might be able to be worked on at home. So in our experience, our daughter had gone through multiple physical therapy sessions and had improved but we weren’t able to accommodate with our schedule her PT sessions anymore. So what we were able to do was talk to the physical therapist and try and find things that we were able to work on at home, and then work with her on those areas. So an example was she needed to work on some of her core strength. So we were able to use cardboard boxes to create a tunnel for her to crawl through so she would still be able to have small activities that would have still been fitting in the physical therapy realm.

Lia: The other thing to consider there is prioritizing which one of those appointments is the most important for you to keep and which one is worth doing at home. So there are some things that you can do at home. For us physical therapy was one that we actually thought we could do at home because it was one of her strength areas. Out of all the therapies that she had, this was the one she was making the most progress with, we didn’t want to just cut her off cold turkey. So initially, we just started doing instead of every week, we slowed down to every other week. And we worked closely with our therapists to make sure that the therapist was in agreement that ‘yeah, these are some things you can handle at home, I feel comfortable with releasing her and discharging her out of the program’. So you can talk closely with your therapists, get their feedback and see what they’re thinking. And then specifically ask them, say, ‘I can’t really manage all of these appointments. I’m thinking of scaling back on a couple of them. And this is what I’m considering what do you think’. And then while you’re having that conversation, say, ‘I am absolutely willing to do some of these things at home, what are some activities that I can do that kind of imitate the therapy that she’s getting here?’ A great therapist will help you with that. Our therapist actually specifically looked for things that we could purchase to have at home to help her. So one of the things was, for example, an inflatable bounce house that we got her. She struggles with jumping and she’s always been delayed in jumping so that was an item that they referred us to and I was able to purchase it and so now at home when we do at-home physical therapy, we might have her bouncing in the bounce house. Another one for her was working on steps. Nowadays, every household has steps you don’t really need to go to physical therapy for that. So we just practice marching her up and down the stairs and using the techniques that physical therapists gave us. So there’s really a lot of options for you to do this. And it’s the same with occupational therapy, speech therapy, all of these therapies have things that you can do at home, just talk to your therapist prioritize based on your needs, and ask them how you can make some sort of therapy room at home where you can practice some of the techniques that they’re doing during the therapy sessions just at the comfort of your home.

Lia: And another thing to consider that has been especially helpful now during the covid 19 pandemic is telehealth options. This wasn’t really an option prior to the pandemic, but now it’s actually available pretty widely. So I have taken a lot of advantage of telehealth. I have done as many of these appointments via telehealth as possible with the exceptions of the ones that I think they really need to be present for. But when you do telehealth, you have the convenience of reducing the time that you need to take off because you no longer have to commute. You also have the flexibility of scheduling that time around your breaks. So if you happen to work close to where you live, if you’re the type of person that can go home during a lunch break or something like that, that is something that you could easily fit into your work schedule since most of the appointments are no more than 45 minutes long. The other great thing about telehealth is it kind of coincides with transitioning over to at-home therapies. So if you did want to eventually try to do some therapies at home by creating your own little therapy nook- like we have in our basement, the telehealth is a great transition way of doing that. It’s kind of like taking off the training wheels of going into a physical location for therapy versus bringing that therapy experience back at home because you’ll have the therapist watching and observing and telling you what to do with your child. But at the same time, you’re practicing doing it. So later on, if you transition out, you’ll already have done it, you’ll know what it’s like. And you can keep doing that without having to actually schedule appointments from that point on.

Matt: Another thing to consider is if you’re having trouble trying to schedule multiple therapies in different areas, and if your child is still under the age of three, is you can lean on the infants and toddlers program. I know for our local school district, they were able to, at our request, bring out a physical therapist, or a speech therapist whenever we’d meet with infants and toddlers, which was I think, every other week. So rather than us trying to schedule a separate physical therapy appointment, we were able to work with the infants and toddlers and have one brought out to your residence which could help with your scheduling struggles.

Lia: The great part of that is that you get it on an as-needed basis. So if you feel like your kid needs physical therapy one week, but not the other, you can go and get it through your infants and toddlers program, which is at no cost to you. The other great bonus of that is at least with our local program, we are able to schedule both a physical therapist and a speech therapist at the same time and the same appointment where they’ll both kind of talk to me back and forth in one group that will knock out an additional hour of therapy. So instead of having to see an hour of occupational and an hour of physical or an hour of speech, you can have one 45 minutes to one-hour slot where you touch base with both the physical and occupational therapists in one sitting.

Matt: Now for us, we’ve tried to focus on combining as many therapies as possible. We’ve really tried to focus on the concept that quality is better than quantity. So by us focusing on the areas that she really needs to improve, we feel that she is better off improving overall, as opposed to the number of therapies we could schedule. So if she’s not necessarily benefiting as much from physical therapy, we tried to work on physical therapy at home if it was still needed, rather than scheduling that time slot and overwhelming ourselves in the process.

Lia: And also keep in mind that it’s not just the parents who get overwhelmed in this, it’s actually the children in many cases who are feeling overwhelmed as well. We want to make sure that your kid is actually thriving in their therapeutic environment, that they actually enjoy where they’re going. And if you see that they’re having a really hard time or they meltdown every single time or they just aren’t enjoying the process, that to me is a sign that they probably shouldn’t be there; you might want to consider doing something else. I know for us, our child initially struggled really hard with one of her occupational therapy sessions. I always say give it the good old college try, give it two, three weeks or sessions of trying it out to see how she does. But if they are still struggling and not really wanting to be there, maybe consider different therapists and see if they have a better chemistry match. If that still doesn’t work, and your kid really just can’t stand these therapies, just consider cutting them and trying to find an alternative, whether that’s doing it at home or doing it through some sort of floortime therapy that you can do through play. There are other options, there even are actually things called play therapy that you can try as an alternative. These are things that you can essentially watch videos of on YouTube if you need to, and just try to do it at home. You don’t even have to include a therapist. But always I would recommend that you at least consult with one so that you can get an idea of what your child is specifically benefiting from and then see how much of that you feel like you’re capable of doing at home after hours when you’re not at work.

Matt: And I completely agree if you see that your child is getting extremely frustrated and downright hates therapy, I would take a step back because the quality of therapy that you’re going to get for your child isn’t going to be worthwhile to continue going there in the first place. It’s always focused on trying to help your child move forward. So we need to make sure that we always keep our child’s emotional state of being in mind.

Outro:
Lia: To recap, In this episode, we discussed why more therapy isn’t always the best option and how switching to telework, flexing your hours, or relying on a caregiver can help you better manage your therapy schedule. Thanks for listening to Embracing Autism. Tune in next time where we will go into a deeper dive into what occupational therapy entails and answer questions such as, ‘how can my child benefit from occupational therapy?’ ‘Are there common target areas for autistic children?’ And ‘what kinds of skills can I expect my child to gain?’ This has been Embracing Autism.

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Resources:
Family and Medical Leave Act (FMLA)
Home of DIRFloortime® (Floortime) – What is Floortime?
Floortime Play Therapy for Children With Autism