Balancing Therapy and Personal Time: Strategies for Parents of Special Needs Children While Maintaining Family Harmony | Ep11

Join me, Dr. Deanna Iverson, on the Special Parent Podcast as we unlock the secrets to effectively balancing therapy and personal time for parents of special needs children. Imagine transforming your home into a fun-centered therapy haven and watching your child make leaps in progress while still maintaining your sanity. In this episode, I share my personal journey of managing a myriad of therapies, from physical and occupational to speech and behavior, and the real impact these have on both child and parent.

Ever wondered how to foster a strong therapeutic relationship between your child and their therapist without stepping on toes? I'll guide you through the intricate dance of setting boundaries, celebrating those hard-earned milestones, and knowing just when to step back to let the magic happen. Using real-life anecdotes, I reveal the challenges and rewards of creating an environment where therapy doesn't feel like a chore but rather an engaging, enjoyable experience for your child.

But that's not all—learn from my missteps and victories as we discuss the critical role of clear communication with therapy providers, the pitfalls of taking breaks from therapy, and the strategies for finding and keeping excellent therapists. Discover practical tips for tracking therapy goals and why patience is your best ally on this journey. Join me for an episode filled with heartfelt insights, designed to empower you as you navigate the complex world of therapy for your special needs child.

Transcript

Speaker 1: 0:00

This program is made possible by friends and partners of the Special Parent Podcast.

Speaker 2: 0:05

I believe that empowering parents of special needs children is like giving them the superpower of unconditional love and unbreakable determination. They are not just parents, they are true champions, shaping a bright future for their incredible children. I'm Dr Deanna Iverson and I'm glad you're here. Hi there, and welcome to the Special Parent Podcast. This is Dr Deanna Iverson. Have you ever struggled to find a great therapist? And then, once you do, you really want to ensure that you keep them.

Speaker 2: 0:42

Therapists and providers are some of the most important supports that we have as parents of special needs children. Therapists are there for our child, but they can also be there for us as a parent and the things that we need. So when the therapist comes, they leave and they can give us tips and tricks to help us get through the next couple of days until the next visit or to help our child find more success, because we can work with our child at other times, too that maybe a therapist can't be there. So therapists and providers are very important partners in this village that we're creating around our children and our families. One of the things therapists can also help us do is find social connections. A lot of times if we're going to therapies that are outside of the house or if we're having maybe small group therapies even within neighborhoods sometimes they do that we can find some social connections with other parents who have walked similar walks to us and have understandings that we have. So there's lots of different types of therapists that are out there. You have your physical therapists, you have your occupational therapists, then you have speech and language, which actually can be related to feeding therapists. So when you go for feeding therapy you're actually working with a speech language therapist, because it's all the muscles and the movement of the mouth. You have behavior therapists, some of them like we've heard of ABA therapy, but some of them might be more of the psychology type of therapy. So we've got those. And then we have alternative therapies out there also. Alternative therapies out there also things like I know there's things called the brain balance center and there's different types of therapies that work different parts of our body and our brain, trying to get everything together.

Speaker 2: 2:34

Therapies can also be in home or at office. So for my son we like to have in-home therapies, especially when he was a lot younger, because that one-on-one attention was so important for his development. So we liked to have in-office therapies for him at that time. As he's gotten a little bit older, some of the out-of-office therapies the therapies in other locations have been really good for him on a social basis. So we've noticed that as he's gotten older and we've tried to encourage more social behaviors so that he finds his place in society, more that therapies outside of the home have been more beneficial to us at that time.

Speaker 2: 3:18

So in-office provides opportunities also for parental connections. So while your child is getting that social aspect of therapy, you as the parent can also be finding some connections, meeting new parents or even maybe your siblings of special needs children meeting other siblings while everyone's waiting in the office or maybe even participating in therapy or maybe even participating in therapy. One of the connections that we made is during one of our therapy sessions for our son. We actually met some families that connected with a special needs little league that we have in the area and so it gave that family connections, extra connections outside of therapies and everything else that their child could have fun with. This boy then joined a sports league when they didn't think that was going to be possible for him and those kinds of things. So it's really important to get involved in therapy both in home and out of the home, not only for the well-being of your child but for you too.

Speaker 2: 4:23

In-home is definitely more convenient for a lot of people. I really liked when we were having in-home therapies. I really felt that my son got that one-on-one attention, that his progress and his advances were more. They were just more easily observable and prominent and seen. It was really helpful for me to watch and observe the therapist at the time and then, when she was not at our house, I would also know how to help my son. I would be able to work with him better. Sometimes it was nice just to be able to step away. The therapist could be in the home working with my son and I could go in the other room. Or I could be cooking in the kitchen or getting some bills paid the other parts of life that may not be so exciting. Or maybe take five minutes and do some of that self-care I've talked about in some of my previous episodes. That may be time that you take some time for yourself with those self-care moments. Maybe do some meditation, maybe do some exercise, whatever it is that really helps renew you. So having an in-home therapist can be really convenient and easy in a lot of ways.

Speaker 2: 5:33

The downside to that, though, is, with in-home therapy, you have a lot of people coming in and out of your house. My husband and I felt that it was sometimes daunting. I was like, oh, there's just always somebody in our home. There's always somebody observing us. It felt like even though they weren't there to critique us or anything else like that, it was just. There was never a break. It felt like, because there was always somebody in our house between the therapies and the providers, always somebody in our house between the therapies and the providers. So the way that we handled it was sometimes we would say we need to skip appointments next week and we would take a break. Or sometimes we would actually schedule to have our respite provider for our son be there at the same time. The occupational therapist was there, and then that was a time when everything was taken care of and my husband and I could just step away for a little bit. I could go to the grocery store as long as I knew I'd be back in time, and those kinds of things. So, yes, it's important to watch, but it's also important to use that time in a way that's going to be best fitted for you and your family when your child is in therapy. A lot of times, especially if it's a physical type of therapy, they do suggest parents somewhat, get involved, throw on that sweat pant and those ponytails and really get hands in. If it's going to be something beneficial for your child and for you, that's always really helpful.

Speaker 2: 6:54

One of the hard parts I found about therapy was setting those realistic goals. We found through a lot of trial and error that not everything worked for our kid. It could be the best practice out there, it could be the thing that works for the 90%, and it just didn't seem to be working for him. So I had to set realistic expectations and sometimes, even though I was really excited because there was going to be this new therapy or this new technique, I was like, oh well, I got disappointed in the progress and that can impact the relationship between you and the therapist and you don't want to do that. You don't want to impact that relationship because your child's not making the progress you were hoping for. We want to be a little more analytical about that progress and figure out why that progress isn't taking place. More analytical about that progress and figure out why that progress isn't taking place.

Speaker 2: 7:47

The therapy team should be adapting to the needs of your child and their job is to help your child adapt to the needs of a world, a world out there, where it may not be easy for them to function, whether that's behaviorally, physically, mentally, emotionally. So the therapist should be really making a program that is specific and hitting all the needs of your child. And if you don't feel that it's working that way, that's where this relationship with your therapist really is important. So talk to them, create that relationship with them, and when we're hands-on and we're in there and we're talking to the therapist every day like what worked, what didn't work, where are we at, that's going to help build that relationship. It helps build the trust on both ends between the parent, the therapist, but also between the child and the therapist, because the therapist knows that they can have the ability to work with your child and that you trust the results and therefore they're going to actually be, in a sense, more flexible with the way they work with your child. So a lot of times the involvement with the therapist you can learn a lot of cues about your child, or you can help the therapist read your own child's cues, so in the beginning. They might need you there more often than they do, say, after they get established.

Speaker 2: 9:05

It is hard for therapists and children with special needs sometimes to create a relationship. It could be because there is just not that natural bond that your child's going to have with someone else. It could just be simply because what the therapist is asking your child to do is not always the most fun and comfortable, though I will say most therapies should be fun-centered and fun-focused with children. But it can sometimes get challenging and that might be when your child doesn't want to push through with the therapist. So make sure that you have also developed and continue to foster that relationship, and that will help the therapist and your child continue and foster their own relationship. Also be aware that your involvement might hinder some types of progress. So communication with your therapist is key.

Speaker 2: 9:58

As we know, when children are around other people they behave differently. I know so many times with my son that some people will tell us oh, he's just on his best behavior when he's with us and then he comes home and I'm like what happened to that best behavior? So that can happen with a therapist too. Our children perform differently when they know we're watching or when they know we're listening or when they know that we're going to be involved and be there. So talk to the therapist, talk to your provider. There should be times that you're probably stepping away and giving them an opportunity to work without your presence there.

Speaker 2: 10:44

The value in a therapeutic relationship is so important that we as parents have to respect that boundary too. The therapist is going to work differently with our child. They're not their friend, but they are to be somewhat a companion on this walk with our child and a good therapist will establish that boundary. And then you as the parent can help maintain that boundary, especially with your child, who may not understand what a therapist's role is in your home. They know what a family member's role is a mom, a dad, a sibling, grandma, grandpa, aunts, uncles, cousins. They know what friends' roles are. Friends come over and they see interactions. But they may not understand how a therapist plays into this because the therapist is going to be an adult that does a lot of interactions but yet not a friend, and so that that can be an interesting boundary and a good therapist will create that relationship and you and the parent can also help your child feel comfortable with that, the new exploration of a new relationship. This will show confidence in your child's ability to if there's times that you leave your child alone with the therapist and go in the other room. That also shows confidence in two people the therapist and your child and that can help your child build some skills of independence.

Speaker 2: 12:04

So it was sometimes hard for me to walk away, not because I didn't trust the therapist If that's a problem, then you need to be looking at possibly a second opinion of a therapist. But sometimes it was hard to walk away because I enjoyed watching the progress. It was one of the wins I could celebrate in my child's life. Other times I really wanted to be involved. They were having fun and I was like, hey, I want to have fun with my kid in this way too. So I had to remind myself it's healthy to walk away for me, for my child and for the therapist and their relationship too. Celebrate some progress with your child. Let your child know that you see them developing and changing their skills. That positive reinforcement and encouragement is so helpful. Our kids key a lot off of our emotional state and if they see that we're happy the therapist is there and we're happy with the progress, then our kids are more likely to kind of buy into the process and the progress.

Speaker 2: 13:04

So how do you know when you're done with therapy? That's one of the questions that was hard for me to answer because, like I said, my husband and I felt that there were just always people coming through our house. We had two different time periods in our life where it was just a lot of people, and one day was this and the next day was a different person, and then two days later was that person again and there was a point when we were changing therapists. So we were on our fourth scary enough, as that number is fourth ABA therapist and it had been two years. That didn't mean they'd all lasted six months, but you get the idea Fourth ABA therapist and we thought, okay, here we go again. We have to wait for someone to reestablish the therapeutic relationship. We have to work with them and establish the relationship as a parent. We don't really get to interview or choose who comes. We get who's available because they rotate through so much as it is and we just decided we needed a break. And we just decided we needed a break.

Speaker 2: 14:11

So upside I called the company and said we just need a break, we just need some time. I said we you know we were on our fourth therapist. I'm not blaming anybody here, but I don't want to re-go, I don't want to go through that process again. I just we need a little break. And they said, no problem, call us back when you're ready. The downside when I called back and I was ready, my son had had some behaviors peak up again. I was like, okay, let's restart this ABA. They were like, oh well, since you took a break, we have to restart the whole process. And so we went from being able to just be on a waiting list that may be a couple of weeks for a therapist, to no one telling us, hey, when you step away you might not be able to get back right away To now on like a six month waiting list just for the initial. It wasn't really an interview, but the initial startup process again. And that was super frustrating for me as a mom. I was like why didn't you tell me that when I took my break, that my break wasn't going to be a break, it was going to be a? I chose to stop services. I didn't realize we were putting through paperwork that says mom says we're done. So it was. It was super frustrating for me and I was a little upset. And if you've learned a little bit about me right now, you've probably guessed I told them I was a little upset.

Speaker 2: 15:35

So key thing if you need a break from therapy, find out what that means first. That was my big mistake. I didn't find out what it meant. What was that going to mean for my child and future therapies and restarting therapy? What did that look like? Was there a timeline or a deadline? So these are all the things that I learned the hard way. So if you decide you need a break from therapy, that's okay. Sometimes it's because your child's reached some milestones and you're feeling good. Sometimes it's just the family needs a break from the constant cycle of people coming through, and that's absolutely okay and understandable. Or sometimes the therapist you have just isn't a good fit. Whatever the reason is for needing that break, make sure you find out the parameters if you need to go back and get therapy again. So here are some more tips and tricks for working with therapists.

Speaker 2: 16:25

Communication is key. I think you've kind of heard that almost like a theme through this chat. What you need as a parent is so important when the therapist comes into the house, they're a lot of times very focused on your child. Well, good, that's their job, right? Sometimes, though, you need to know, as a parent, what do you want from me. You need to know, as a parent, what do you want from me. So communication needs to be how do you want to work with my child? What are the stages and phases that I should expect to see? How do you want to communicate with me? How are you going to let me know if you want me in a session or don't want me in a session? Should I be in some sessions? How should that look? Should I not be in some sessions and how does that look? So that communication those are all questions I didn't realize I needed to ask at the time. So when I did ask them, I was really glad because the therapist knew the answer and they had it all figured out. We just since I hadn't asked the question, they didn't realize they needed to tell me. So make sure you're working as a team. Ask questions, ask them what they need from you, ask them the progress.

Speaker 2: 17:37

I remember one time someone from the company called and said hey, we just wanted to check on the goal progress, how do you feel your child's doing? And I felt really bad because my question was what are the goals? And I realized, oh geez, I hadn't been keeping track. So I started doing a better job of keeping track of what were the goals. You know we had feeding therapy, we had occupational therapy. I needed to know the goals of all that. And then I realized there were goals for having my habilitation provider. So ask what do you need from me? What do you need me to be aware of and track? What are the goals you're working on? Talk about your progress, even if it's just a quick out the door little five second, five minutes summary somewhere in there. Hey, what were the wins today? That's always a great thing to start with because that makes everyone feel on the positive up and up. What were the wins today? And then, what were the things that didn't go so well that you know maybe I can help with next time, or I can talk to my child about, or prepare them for, or expose them to three more times before you come back to see if we have more success. And that also helps with boundaries and ensuring there's good. Just that communication and that connection.

Speaker 2: 18:48

Patience is key. Patience is key with most things, with raising special needs kids. I think we all know that. It's also key to understand that you're going to be tracking goals and some goals are going to move at different rates than others. Sometimes you're going to feel like your child's not progressing at all and that can feel like a little bit of a gut punch, like what's going on? Why is this happening? But patience is key. Sometimes it's just because the brain or the body is so focused on developing in one area and it's not ready to develop or pay attention to the other one yet. And that's okay. Don't be afraid to try something.

Speaker 2: 19:28

This is, I think, as parents, we a lot of times feel judged. Hey, I'm going to go try this new therapy over here. Oh, why are you going to try that therapy? Oh, I heard this hokey thing about that therapy. Oh, you know, and whenever you tell people I'm going to try something, a lot of times what you hear from other people are all the negative sides of it. You know what Mama go try it. What you hear from other people are all the negative sides of it. You know what Mama go try it, go for it.

Speaker 2: 19:58

I encourage you to try all the therapies that you think will benefit your child, and the minute you find out they're not worth their money, they're not worth their time, then you can walk away from them, but you'll never know if they worked for your kid, if you didn't give them a shot. So go for it. I encourage you, and I applaud you, a couple of things to walk out for. Watch out for excuse me, if that therapy is claiming it's a cure probably a good sign to walk away and not even spend your time or money. That's the key thing, really, just if they claim it's a cure. The other thing, though, is that if you're trying multiple therapies and someone says, well, what do you think really is working, there's no harm in saying all of it, because if I wasn't doing all of it, then maybe none of it would catch on the way it is. So it might be the combination of the different therapies that's actually having the progress, not just the one therapy alone. So it's okay to try, as long as you're not exhausting yourself or your child trying things Again. Go for it.

Speaker 2: 21:04

Final thoughts those relationships are so key. Foster relationships, keep that positive outlook, celebrate all the wins. That's the one thing I always try to do is when I talk to a therapist or anyone that I work with with my son, tell me something good that happened today. Celebrate those wins, because anyone and everyone who comes through your house is there to work with you, your family, your child. So spoil them. They're working hard and the more you spoil them, the more they're going to spoil your kid. So I say, just spoil them. Show them how much you appreciate them and they'll show that appreciation by working really hard for your family and your kid. So thank you so much for joining me today. I hope that helped a little bit.

Speaker 2: 21:50

When talking about therapists and therapies and providers that come through the home, I know I focused a lot more on in the home versus out of the home, just because that's where we have most of my experience. But if you have any other questions, thoughts or comments, please don't hesitate. Feel free to just jump onto my website there and send me a message. I make it a point to get back to anyone and everyone who sends me a message or drops a line. So it's so good to talk to you today. Good luck working with therapists from Briders. Good luck finding the good ones. They're not always easy, but when they do. Hold onto them and hold on tight. Have a great day.

Speaker 1: 22:29

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