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