Physical Therapy
Show Notes for Embracing Autism Podcast — Ep. 108

Intro
Lia: This episode we explore physical therapy and what you can expect during sessions as we discuss common activities and potential benefits for your child.

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
Lia: So physical therapy is something that not every child will necessarily need. Our youngest child did not need physical therapy. But our older child, it became pretty prevalent that she did need physical therapy. Really early on, we learned about her physical therapy needs through an assessment through infants and toddlers program; they had a free Physical Therapist come and check by during one of our sessions. And they were just evaluating because we had some concerns. Some of our concerns were the fact that our older child would fall a lot when she would walk. She wasn’t able to really get from place to place without tripping and initially, we thought, ‘oh, maybe she’s tripping on a toy,’ or something like that, but as we paid closer attention, we noticed that she was tripping on absolutely nothing. There was nothing on the floor, no obstacles, anything like that. And she was constantly falling over herself. We also noticed that this would happen when she would transition from, for example, tile to carpet, or anytime there was a transition in texture on the ground; she wasn’t able to really transition well from the different textured floors and that would also cause her to fall. So the first thing that they did was have that physical therapist come in with infants and toddlers to take a look at her and they noticed that it seemed that her hypotonia, or low muscle tone, may be contributing to her having some balance issues and some other issues that were contributing to her difficulty with walking and running. And they also noticed that her ankles were kind of buckling in a little bit. So from there, we were actually referred to an orthopedic and the orthopedic doctor would basically check her physically and make sure that there wasn’t anything physically wrong with her feet, or to see if she would be referred to have some sort of x-rays or anything like that. Luckily, when we got her evaluated, there was nothing wrong physically with her feet, it was just a matter of her muscle tone that was causing the issue. So we got an official referral for physical therapy and she went starting off with just the balancing and walking issue. But once we got her into physical therapy, we actually found out through the therapy sessions, that there was a lot more to it than that. And there were some other areas that she had to work on as well. So your child may or may not need physical therapy. But if you feel like there’s something going on that you can’t quite explain, it never hurts to get an opinion.

Matt: Yes, our oldest daughter really had balancing issues, she wasn’t able to transition with the different types of density or texture from one floor type to another. So when we had gotten her into physical therapy, first off the bat she was falling immediately. They had different types of mats with different densities. So when she would step from one to the other, she would immediately fall and even from just the plain standard tile floor in the physical therapy office to the first mat, she would fall immediately. So we had to start out very, very small and basically kind of just get her to stand on the mat while she was performing small little activities. There was a magnet board and they had her play with little magnets while she was standing on the mat to work on her stability and then we were slowly over time able to try and introduce her to actually walking on the mats themselves.

Lia: In physical therapy they have a bunch of different kinds of mats. They started her off with a flat mat and the flat mat has no angle to it. It’s just completely flat, but it’s cushioned, it’s padded. And the theory behind that is if your child is walking on a cushioned surface, that cushioned surface has a little bit of give and since it has a little bit of give it requires your child to have to engage their core muscles to be able to balance and stand so it’s kind of like a passive way of having your child exercise their core muscles without them even know they’re exercising just by having them walk on a padded cushion. There were other cushions that once your child transitions after being able to do that skill, they add an incline to it. So there’s the flat mat padded cushions that they’ll start them off with and then they have padded cushions that are at an angle and there’s some angles that are steeper than others the goal is to gradually increase that angle so that they’re having to put in more work in their core muscles and other areas to to be able to balance and not fall but they start flat and gradually pick it up.

Matt: And then another kind of in the same realm is the idea of the balance beam. Now obviously there was no height with the balance beam it was right on the floor. If she fell she fell two inches off to the ground. But I think the purpose of this, and correct me if I’m wrong, Lia was more so to have her walking with a direction and a purpose. So my understanding is if she walks on a mat, she can kind of just walk shoulder length apart and kind of wobble like a penguin, if she wanted to, she would still be able to stabilize herself and she wouldn’t fall. But when you’re put on a narrow balance beam of four to six inches, it forces you to walk in a very precise line with a purpose. And there isn’t really any error for messing up more or less.

Lia: Yeah, and that also kind of forces your child again, to engage that core. Because if you think about it, when you’re trying to balance, you’re focusing really hard on contracting your muscles a certain way so that your body doesn’t fall off. So that is one way to start them off, they do kind of like a balance beam that’s flushed to the ground. So they’re not in the air, they’ll start off flush to the ground. I know some places will also gradually increase the height on that depending on the age of your child. So if you have a really young child like ours, like a toddler, that will probably stay flush to the ground. If you have a kid who’s a little bit older, they’ll probably try to gradually increase a little bit of height to make it a little more challenging for them. The other great thing about that is it kind of forces your child to focus and pay attention and be aware of their surroundings, because part of the problem with autistic children and ours in particular is difficulty with the body surround and body awareness and their awareness of self in space, which means they aren’t really able to discern where they are in space. Our child, for example, when she was at the playground, should be running up a ramp and fall right off the edge, not realizing that it ends there and that she would have to turn, she would just keep running and not really realize that ‘Oh, there’s there’s an edge. If I keep going, I’m gonna fall.’ So part of this activity was to help her gain some of that spatial awareness and recognize that ‘I need to stay on the beam, I need to put my eyes and focus and attention on this to stay on the beam. Otherwise, I’ll fall off.’

Matt: You raised a good point with the spatial awareness because it became a flat out safety issue, even something as small as just stepping off a curb from the sidewalk to the street, she would be completely unaware that there was even a step down. So you’re just thinking in your everyday life where you encounter a small little change and you’re no longer walking on a flat surface, there’s a step, she would not even notice any type of change. And she would just keep walking as if it was flat and would ultimately fall. I mean, thankfully, we were always there to catch her or hold her hand, but it was definitely something that we had to keep an eye out for.

Lia: And the other great part about the balance beam is it is diverse, the one that they have, that’s a mat, it’s one that’s flush to the ground, but you can move it so they were able to move it different locations, which would allow them to be able to put activities in front of it. Matt, you mentioned the magnets was one of the activities. There’s other activities that they use to engage your child, there’s these toys that are called Squiqz (paid link). And they’re essentially like suction cups that you can stick on to flat surfaces like Windows and walls and things like that. At physical therapy, they would take either the balance beam or they’d take like those cushioned ramps or cushioned stairs, they would put those up flush against a wall or window where they would stick a bunch of these Squigz and once they would get her up there, it would hold her attention so that she could practice some of the skills they were working on.

Matt: And in keeping with the theme of balance, one of the reasons that we were going through PT was also to build her core strength. So her balance was bad, and she was constantly falling but on top of that she also had weak core muscles. So she wasn’t able to really stabilize herself. This is critical for something as small as going up the stairs, she would lean backwards, where we would have to basically be behind her holding her in place as she would walk up the stairs, being able to kind of stay in her own space and not kind of fall one way or the other as she’s going up the stairs.

Lia: Yeah. And that was also pretty obvious with her inability to go down a slide that core strength really became obvious to us once the physical therapist pointed it out. We didn’t notice before, but when she would go up the stairs she needed assistance. And that was another thing we’re working on is climbing stairs, she couldn’t do that. We would help her go up the stairs on the slide and then when she would go down the slide. A typical kid who goes down a slide will be able to stay and sit in a seated position and slide down no problem. Anytime she would go down the slide, she would just fly back so her head would fly back and her and she would essentially slide down laying down on her back because she couldn’t keep herself in the seated position. The therapist was telling us that her core muscles were too weak to keep her body up and keep the muscles engaged enough for her to be able to do that. So that was another thing that we ended up working on in physical therapy was really working on strengthening those core muscles so that she could do something as simple as go play in a playground without having to worry about getting injured.

Matt: And some of the activities that we have worked on to try and strengthen her core was in physical therapy, we would use a platform swing and we mentioned in the occupational therapy, they were also using a platform swing more-so for the sensory of the motion, but at physical therapy, they were focusing primarily on her core muscles making sure that she was able to stay in place as the swing was going back and forth. Granted, it wasn’t going very high or very far; it was very, very gradual. Our daughter had her feet kind of dragging on the ground, so she was in complete control. But we also noticed that as soon as the swing would start to go forward, our daughter would have to lift up her legs as a counterbalance as where if she had a stronger core, she would be able to stay in place without necessarily having to shift her weight to try and prevent from falling backwards. So we had gone through many therapy sessions, and we’re still working on her core balance today.

Lia: Because of all the physical therapy that she’s had, she did completely resolve her issue of falling on the floor, so she no longer trips over her feet, she’s completely resolved that. Now she’s able to run, but I can tell that she’s still not super confident in her running ability, but she doesn’t fall anymore, which is great. That’s kind of an ongoing issue. Because if your child does, in fact have hypotonia, like our child, which is low muscle tone, that’s a lifelong thing, there isn’t anything you can really do about it other than physical therapy. So sometimes people with hypertonia need lifelong physical therapy, sometimes you don’t, it just depends on the severity and how much it affects your quality of life. So for her, we’ve done a little bit of a pause for physical therapy right now. We would like to do some more but we have decided to prioritize other therapies that are a little more critical right now. But we think in the future, we’ll probably continue doing that. And I think and I suspect that a lot of children who do go into physical therapy for hypotonia will likely need to continue long term as well.

Matt: And there are ways to still improve like in our case, we’re focusing on core strength. And there are other ways that you were able to improve core strength other than needing to use the platform swing. For example, crawling through a tunnel as far as being able to stabilize yourself in order to crawl through the tunnel. So we’ve set up multiple Amazon boxes, cut holes in them made a series of tunnels or even just purchasing a small cheap fabric tunnel so they can practice going through the tunnel, as well as this is a bit more fun creating a like mini obstacle course for them. So she can go from one unstable surface that might be like a pillow or something to the floor have to climb over something, then go through a tunnel. So by having her kind of challenge her own ability would necessarily strengthen her core muscles and improve over time as she continuously practices that.

Lia: Other great ways to engage core is pushing things and knocking things over. This is one of the activities that they would do in physical therapy as well. They had a lot of these foam blocks that were in they were different densities. So some of them were heavier than others. And some were stacked and some were just balanced. And they would have her practice shoving them over. We noticed that with her initially, it was really hard to get her to do any sort of activity standing, she always wanted to sit. And that was a struggle initially was just getting her comfortable standing because the cushioned floor may make your child feel unbalanced and uncomfortable. So initially, they might not be comfortable with standing up and may need a little bit of encouragement to do that until they get used to it. But once she got used to it, that opened up the ability for her to do some of the tasks that required standing and pushing. And that’s some of that heavy work that I mentioned in the last episode, heavy work is work that requires your child to really put in that physical core muscle effort. It’s called heavy work, because usually you want to put some sort of resistance in there, the resistance can be something that’s like pushing or pulling or tugging or anything like that. In our case, our daughter’s heavy work was mostly pushing these big blocks down, they were probably like the height of her. So they were pretty big and she had to use her core muscle strength to shove them over kind of like a Jenga tower.

Matt: And I’m not sure if this would fall into the category of heavy work too. But they also have weighted balls, the medicine balls that they would have her carry and put in the little shopping cart, and they would have different weights involved. Obviously, they were all within guidelines. So she was never at risk for any type of injury. So she would carry one ball and then a little bit heavier. And she would actually have to work to lift up the ball because I mean, it was heavy for her. So I’m not sure if that necessarily falls into the same category of heavy work or if it’s slightly different or has a different purpose altogether.

Lia: That actually does count as heavy work those I think were the are you talking about the yuck-e medicine balls, right? (paid link)* So there’s these type of weighted balls called yuck-e medicine balls, and they’re great for both PT and OT — by the way, PT is an abbreviation for Physical Therapy that’s commonly used for OT I think we mentioned in the last episode — they might use that more for sensory related reasons in PT they use it more for that core engagement. And the yuck-e medicine balls, these have like a texture to them that makes it easier for kids to grip if they do have some fine motor issues. So sometimes the physical therapists will have that there just to have that extra assistance in case that child has that difficulty. But what’s great about those is they vary in weights drastically. So there’s some that are super, super light, there’s some that are super heavy, and there’s some in between. It’s great because it covers all spans of kids development. So if you have a two year old who’s going to physical therapy, they can still use the yuck-e medicine balls, they’ll just use the lower weight. If you have a 10, 11, 12 year old going to physical therapy, there’s a ball that is weighted heavier, so that they can do the same thing. The great thing about physical therapy is if you’re listening to this, and you have a very young child, or you have a much older child, honestly, the tasks don’t vary that much; what your child is going to be doing is pretty similar, regardless of their age, it’s just a matter of how they adapt that task for your child. They might just increase the weight, they might increase the resistance, the older your child is, or if your child is an older age, they might incorporate some unique things like our physical therapist had a rock climbing wall, our child was definitely too young for that. But her older children who are working on core development, they might use that rock climbing wall to help engage not just the core, but the rest of the body muscles to pull yourself up. So they do definitely have a range of activities for a wide range of ages.

Matt: And I think you do a great job of mentioning on one of our main points when we’re going to physical therapy was focusing on the age milestone that she would be meeting. So for us, we are focused more so on, she didn’t have the ability to jump. So our goal was trying to get her on a trampoline, where she would be able to jump, another big one was kind of going up the stairs. So she was about two or so. So we were still working on going up the stairs, and just little things like that, that have it pegged to a certain age of ‘Okay, we need to see if we’re able to get her to start to achieve some of these tasks that kind of keep her on the right trajectory moving forward.’

Lia: The other great thing about physical therapy is it’s very specifically tailored to your child, so our kid had those three targeted goals, and your child may have different targeted goals. Depending on their delay and their age, some things may be considered a delay, or may not be depending on their age. So jumping is a delay for our kid because of her age. But if your kid was younger, that wouldn’t be considered a delay yet, so they wouldn’t work on that skill. For older kids, they are going to be having a different set of guidelines than younger kids, because their development is supposed to be at a higher level than that of, for example, a toddler. So the skills that you work on during those activities are going to be completely different. Or they could be similar if your kid is particularly delayed in that area. So again, it’s very, very, very child specific.

Matt: Right, I think that’s important, because I mean, you go into the physical therapy, and then they find out where your struggles are. And they try and improve upon those focusing on those individual needs for that child. So I think that was really helpful for us. I mean, jumping is still quite a challenge, we haven’t gotten her to actually achieve vertical velocity. That’s no lift. But But I mean, she’s just making good progress. And she gets the idea of when we say ‘Oh, jump, jump, jump’, she’ll bend her knees and kind of go on her toes. So she gets the idea of kind of the process of the jumping, it’s just the next level is actually getting the lift component.

Lia: Another thing to mention is that when you go in to see the physical therapist for the first time, what they’ll probably do is that initial assessment or evaluation, which is mostly observation and interview style questions, it’s very similar to diagnosis day with autism and all these other therapies, they all have a similar trend of some component of interview style questions and observation. On that first day, they’re gonna ask you what your concerns are about your child. So again, for us, it was really the fact that she kept falling and tripping over her feet. What may happen is that throughout the session, they notice other things. After the interview portion, they just start observation, so then your child is going to be observed in play activity typically. So they have different tasks, they might have like an obstacle course pre-set up in the room for your kid, that’s usually what was set up for our kid. And then they’ll just let your child do whatever they naturally want to do. They’re not forced to do anything. If you have a therapist that is forcing your child to do something against their will, that’s a bad therapist, find a new therapist, definitely do not stay with that therapist because it should be child led. And so while your child is going through these activities, they’re going to be making observations, they might ask you questions like ‘I noticed she fell when she did this, is that something that you would normally observe happening at home as well?’ Or ‘is this kind of a unique one time thing?’ They’ll gauge that level of difficulty of tasks through that process, and then they’ll make goals with you based off of that evaluation. That is how we realized that there are actually more issues than her just tripping on her feet. That initial evaluation gave us some feedback that she was a little more delayed in some other areas as well like the jumping, and the core engagement going down the slide. We had no idea until physical therapy that that was an issue. I never thought to think about she’s falling back when she goes on the slide.

Matt: I was actually blaming myself on that, because I remember when she was really little, I was worried about her falling forward on the slide when she was sitting down, because she would still try and put her feet down, I thought she would kind of project herself forward. So I would almost kind of lie her back a little bit more than what you would naturally do going down the slide. So I was kind of blaming myself with the idea that maybe I had unintentionally taught her how to go down the slide incorrectly without knowing one way or the other.

Lia: Overall, we found that physical therapy was actually really, really, really helpful, because it not only opened our eyes to some new potential problem areas, but it really, really helped her with some key critical areas, like the falling down. You simply can’t go through life if you’re constantly falling, it just makes it impossible for you to be able to do anything, especially with social interactions, which is part of autism spectrum disorder; you can’t socially interact with other people if you can’t get to other people — you can’t play tag and hide and seek if you can’t walk or run. So that was really important for us, in particular, and it’s something that we’re really happy to say we did actually get completely resolved with physical therapy.

Matt: Right, I was gonna say, I mean, we’ve definitely resolved as far as her falling down, there are still areas that obviously we’re still working on with her. So I think it’s an ongoing process. And I’m sure that as we kind of continue down the road, when she gets a little bit older, we’re going to focus on the different age milestones, making sure that she’s still able to kind of hit those marks as necessary.

Lia: Keep in mind that again, each child is unique, and each child is on their own timeline. So do not feel discouraged if you notice coming up on some milestone evaluation that your child is physically developing at a slower pace than everyone else. I know with our child, we started noticing this during the milestone evaluations and her pediatricians office. And I’ve talked to a lot of mothers that say every time they go to these milestone evaluations, it’s always like a gut punch. They’re always taken aback with man, my kid is so behind this is so torturous to go into these meetings. And then notice every single time they have to mark, no, no, no to every question of ‘does your child meet this milestone’, but I would challenge you guys to try to look at things in a more positive perspective. Just keep in mind that your child is uniquely yours. It is their specific target area, it’s their specific goals, you don’t need to compare their goals to another child. Even if you have multiple children you don’t need to compare it with the other of your children. Each child is unique and has their own unique challenges and their own unique strengths. So when you’re taking a child to physical therapy, if you do, in fact, get a feedback of ‘Oh, did you realize this was also delayed, and this was also delayed and this was also delayed’, it does initially feel like a bit of a setback, like ‘Oh, man, I came here to try to resolve an issue. And I came in with one and came out with four’. At first that might be a little bit daunting and it might make you feel discouraged. But I would just challenge you to look at in a positive way. Because you are finding problems early and you’re targeting these problems initially. So you’re going to make more improvements, the more you know, rather than trying to avoid it just to avoid disappointment, because it’s, it’s not really about disappointment. It’s about helping your child in any way you can so that they can be the best version of them that they can be.

Matt: And it might sound dumb, I remember seeing a quote on a board, I think when we’re going to occupational therapy or physical therapy, and it was basically the concept of popcorn kernels, that if you’re making popcorn, they’re all in the same oil, they’re all provided with the same amount of heat. And yet not all the popcorn kernels pop at the same time. They all pop at their own individual time. And one is not necessarily better than another just because he pops early versus one that takes a little bit longer to pop. I mean, I don’t know why but that phrase kind of stuck with me. I’m kind of like, ‘okay, like we got this, we definitely are on our path, and we’re getting things done’. And I also wanted to mention, one of the dare I say annoying things about physical therapy is the equipment that they use for physical therapy is incredibly expensive. I mean, not everyone, including ourselves, can afford a mat that might cost 1000s of dollars to do physical therapy. And I think this is where you get to become creative in creating a physical therapy environment for your child. I might not be able to purchase an approved gym mat for $2,000 to work on her balance, but I have a mattress a few foam cushions on a sofa that I can put on the floor and I can have her walk from one cushion to the other we can play the floor is lava in our living room. I mean, there’s activities that we’re able to do to mirror the very expensive components and equipment that we would encounter in physical therapy. It doesn’t mean that we can only work on physical therapy in the PT office itself.

Lia: If any of you guys are handy or crafty people out there, I know Matt and I have looked into building some of these tools ourselves. For example, the platform swing that is super expensive. A platform swing runs at least $300, on average for just the swing and some rope. It’s honestly pretty overpriced, in my opinion. But there are YouTube videos out there that exists that show you how you can make your own platform swing and like-

Matt: something like $50 or less or something.

Lia: Yeah. So if you feel comfortable with, you know, arts and crafts and handyman work, then I would just encourage you to look on YouTube and Google some of these resources if you feel up to it, because it’s honestly a much cheaper alternative.

Matt: Right? And that way, you won’t break the bank trying to support all these therapies. You’re working smarter, not harder.

Lia: And that’s another reason why Matt and I actually decided that of all the therapies, this was the one that we decided to scale back, because with the time management issue, we weren’t able to have enough resources to be able to take her to all of these therapies. And although we feel that she definitely still needs physical therapy, we felt comfortable enough in our ability to recreate these activities at home. So we have tunnels that she can go through, we have stairs that she can work on climbing. And another great solution is if you have a local playground, if your child is younger, there’s usually the younger area. And then if your child older, there’s usually an older playground area, that’s great for makeshift PT. Like most of the activities, there are climbing activities, crawling activities, jumping activities, there’s so much available there, that is essentially what you would do in physical therapy anyway. If you have an older child even older than that, like 15, 16, 17 those kids, you might want to be able to bring them to places like Sky Zone, or some other areas that are for the older audience that have a lot of that jumping and trampolines and all sorts of stuff there. So that’s kind of like their equivalent of a playground.

Matt: Or I think of the the, the bouncy houses for like, Halloween or whatever they have, like they set up sometimes like the bouncy houses or whatever. But obviously I mean, that’s like a, an off time, you can’t bank on that.

Lia: Actually, I will say one of the things we did do as a result of having to cancel physical therapy is we did actually buy an indoor bouncy house for her.

Matt: Oh, that’s true, I forgot that.

Lia: So we did actually purchase one of those, because one of her struggles is her inability to learn how to jump. And so we got a bouncy house, and it’s indoors. And she’s able to practice on that. We also got a tricycle for her to practice the motor planning. Basically a lot of autistic kids struggle with motor planning, which is kind of getting your brain to communicate with your body. So if you say ‘I want my feet to pedal’, it takes a little bit of work for your brain to get the signal to your feet to actually pedal a bicycle. So that’s something that they work on in physical therapy as well. But you could easily get a bicycle at home and do that with your child at home.

Matt: And I think we also had the conversation with our physical therapist as far as what activities can we work on at home. And I mean, she was fantastic. She basically provided us a list of how to work on such activities to improve core strength, balance, whatever we were trying to improve from home without all the equipment that they have in the office.

Lia: Yeah, she actually was the one who let us know about that bounce house in particular. If your child is beyond that infants and toddlers age where they’re not able to get access to that physical therapist, they may be able to get it through the IEP and the local public school system. I had don’t have experience with that so I’m not sure if they’re able to consult with you. But my suspicion is they probably can, you can have a conversation with them about a kid’s specific challenges and see what they might recommend for you to purchase at home to work on. Otherwise, if that’s not an option, you might want to consider just going to a physical therapist for like one or two sessions, just so that they can evaluate your child observe your child. And then you can ask them, what are some recommendations I can have to do this at home because I’m not really able to bring them to physical therapy consistently. So those are some options as well.

Matt: Yeah, and overall, I think physical therapy was very beneficial for the groundwork, and the foundation of getting us started heading in the right direction. I mean, we wouldn’t have known many of the areas that we needed to even work on without having consulted with a physical therapist in the first place.

Lia: I definitely would say if you’re considering physical therapy, if you’ve been referred to physical therapy, if your child is struggling with any sort of gross motor issues, I would 100% recommend that you get your child evaluated with a physical therapist, see what they have to say. If they do encourage you to do physical therapy, I would do it for at least a month to get an idea of whether or not you think that’s something your child would benefit from. And if you feel like financially, you can’t really handle it or you don’t have the time then just consider doing it at home after that point. But I would definitely give physical therapy consideration if it’s something that’s already on your radar.

Matt: And I would also add to keep track of how many sessions you’re going to for physical therapy. I know for our insurance company, they had a set number of how many sessions we were actually allowed to partake in before the bill would actually come fully to us. And we wouldn’t just be paying the copay, we’d be paying the the entire balance of the session. So definitely stay in contact, more so with your insurance and the front office to have them notify you how many sessions you have, and just keep track of that. And then when you do finish the set series of however many sessions your insurance will allow, then you can either have the conversation with a physical therapist, or if your insurance will allow the habilitative shift, I would definitely recommend that as well if it’s still needed, but that’s definitely something I would keep in mind and don’t go into this blindly. Otherwise, you might be getting a bill for much more than just the copay.

Lia: Yes, definitely make sure that whenever you go to your therapy sessions, whether it’s PT or OT, or whatever it may be, make sure you let them know in advance, let me know when my insurance is no longer billing this so that they don’t just keep billing you because you will get billed the entire price. And it gets really pricey really fast. I mean, hundreds, if not 1000s of dollars, so definitely do that. The other thing that I want to add on to what you said there is when it comes to the habilitative services, what we ran into was with the speech and occupational therapy, it was covered unlimited sessions with habilitative. However, physical therapy was not covered. And the reason our insurance said it wasn’t was because of the facility that was doing the physical therapy. So for some reason, they wouldn’t qualify our particular facility as one that counts for habilitative. But the other facility that we had that was doing the OT and the ST did count, so you might want to get in touch with the insurance company and the facility in advance and see if they are one that qualifies as habilitative. If not, I would look into other physical therapy clinics in the area that do.

Matt: I think one of the reasons why is because our physical therapy was outside of the Autism Center facility itself.

Lia: Yes, the the main issue with that is the insurance will only cover it as habilitative if you can prove that the reason they go into physical therapy is directly related to their Autism Spectrum Disorder. Our other clinic was an autism clinic. So they knew by default, all the therapies there were meant for autism. This clinic was a generic rehab facility clinic, and so they did not have an autism code in their medical code system. So you have to make sure wherever you go, they have an autism code for habilitative physical therapy. So that’s pretty much all we have for today’s episode.

Outro
Lia: To recap, in this episode, we discussed how physical therapy can help your child work on balance, core strength and coordination among other key areas, as well as how you can recreate physical therapy at home through use of items such as tunnels, bounce houses, playgrounds, or other creative means. Thanks for listening to embracing autism. Tune in next time when we will deep dive into all things speech therapy and answer questions such as, how can my child benefit from speech therapy? What are some forms of communication my child may be taught? And will my child learn to speak? This has been Embracing Autism.

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References
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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