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Webinar alert! Strategies for Communicating with Special Education Families

Texas, On-DemandCalifornia, 2/29
Julie McIsaac
on
June 3, 2020

Kitchen Conversation: Occupational Therapy at Home

Carrie Alvarado is the creator and director of the Earliest Connections Clinic and the DIRFloortime/PACT (Pediatric Autism Communication Therapy) Hands-on Family Empowerment program at Autism Community Network (ACN), a non-profit focused on provision of both interdisciplinary diagnosis and innovative intervention for young children with autism spectrum disorder.

 

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Introduction

Hello, everyone. Welcome to our very first Kitchen Conversation. Thank you for being here. I am going to assume everybody can hear me, but if you can’t please just make a note in the chat there, and we have people to help sort out any technology issues that come up. 

So I just want to thank you all for taking the time out today. We will keep this brief at 30 minutes, as we said. We are thrilled to have you here. And we’ll just get started. 

So today, we are very happy to have with us Dr. Carrie Alvarado from San Antonio, Texas. And Carrie is going to share her expertise in child development, relationship-based approaches to working with families through the lens of her work as an occupational therapist. So we will hear more from Carrie in just a few minutes, but I want to take care of a couple of housekeeping things here. 

So first of all, we are going to be recording this session, and we’ll have it available up on our website at ExceptionalLives.org just as soon as we get the closed captioning up on there. So when that’s ready, we will alert you through our social media outlets and newsletter. So be sure you’re signed up there, and you can access that and share the recording as you wish. 

Your audio for this presentation will be muted. We would love to hear from you, but because we’re a larger group we want to make sure that we get through the presentation and then have enough time for questions at the end. 

So we will use the Q&A function, which you’ll find at the bottom bar there beside the chat. And so you can ask questions there for Carrie. And we will have some time at the end to address those questions. Any questions that don’t get answered, we will get back to you through email. And I believe Carrie will also be sharing her email, so if you have questions there, please reach out. 

And then the chat function you have been using to introduce yourselves. Thank you for doing that. And if you have thoughts or observations as we go, please feel free to use that chat function to share and connect with us here. 

OK, so just a very brief bit about who we are. My name is Julie McIsaac, and I write a lot of the blogs for Exceptional Lives that maybe you’ve read or maybe you will read after this. So Exceptional Lives, for those of you who are not familiar with our work, we are a nonprofit, not for profit organization, and we provide free information for families who have a child with a disability and are looking for help accessing services or understanding complicated processes. 

So as you can see on the next slide here, for those of us who have been searching, late at night, potentially, for information– Carrie, can we just go to the next slide? Yeah. There we go. This is an example of what you may find if you’re looking for something on social security or maybe an IEP process [Louisiana IEP Guide/Massachusetts IEP Guide] or a diagnostic process late at night when you have a moment to yourself and you’re trying to gather all of that information. And that can be kind of stressful, and the information can be overwhelming. 

So what we do in our work at Exceptional Lives with everything that we put out is we try to make it easy to understand. So our goal is that you can sign on, find the information that you’re looking for in small chunks so that you can find just what you need, and then be able to take the action that you need and step away and go ahead and access the resource or the support that you need to move forward. So we do that through guides, as you can see there. We also have a searchable resource directory that is state specific in Massachusetts and Louisiana, as well as our blogs. So we hope you’ll check us out if you haven’t already. 

OK, and the next slide here. And this is– so my professional background is child development, but I am also the parent of three children who are receiving different therapies at this point. So this is a photo of my youngest child in his first speech therapy telehealth appointment a few months ago. And that lasted about 20 seconds. [CHUCKLES] But I’m happy to say his session this morning was a full 20 minutes, so we’re making progress there. 

But a lot of us at Exceptional Lives are parents of children with various disabilities as well. And we are really asking, we’ve been asking our community what it is that they need support with. 

And some of the questions that we’ve heard are, how am I supposed to do occupational therapy or other therapy through a computer screen? What does this even look like? My child will not sit still. How am I going to manage this? Or, is this even available to me? So we thought as the first in our series, we wanted to answer those questions and find out what does that look like. And so Carrie will help us understand that. 

We’ve also been devoting our work at Exceptional Lives to supporting you while we are at home and navigating this world during the pandemic. So we have additional resources there that are also available in Spanish on our site. 

So we can go to the next slide here. So we would just like to know about your telehealth experience. If you could just answer this brief poll, that will help us understand who you all are and what your questions are today. And then we’ll hand this over to Carrie and get started. 

So I think– there we go. OK. So, don’t know much, but we want to learn more. This is perfect, I think. Right, Carrie? [LAUGHS] 

Yes. Exactly. 

OK, so I’ll turn my video off and turn this over to Carrie. Enjoy. 

Presentation

Fantastic. Thank you so much to Exceptional Lives for having me today. I’m really excited to be with you. We don’t have a lot of time together, but I’m hoping to give you as many of my ideas as I can in a quick manner. 

Just a little bit more about my background. I’ve been doing telehealth for quite a while now, even before coronavirus struck our lives. I do mostly reflective video feedback with parents around an autism diagnosis [Louisiana Autism Guide/Massachusetts Autism Guide]. So prior to the diagnosis, after the diagnosis. It’s more of a parent coaching model where we use video feedback to guide the parent in supporting the child’s skill attainment in whatever area the child’s needing that support.

So I decided what I would do to try to make this a little bit more concise for you guys is kind of turn it into an acronym. So I decided that SMART was a good way to kind of break down the different things that I wanted to cover with you. So these are SMART ways to make it through this difficult time and to navigate kind of the newness of telehealth. 

So SMART breaks down into five different pieces. S stands for Sensation, and this is really about the preferences that your child has from a sensory perspective, what some of their needs might be. The M is for Movement. I consider movement the great organizer, and I think movement can be our best friend during this time of coronavirus, especially when you’re trying to have your child who might be a wiggler sit in front of a screen and do teletherapy. Affect and Attunement. That’s really the emotional needs that your child might have at this time– really tuning in to making sure that what your child is learning or doing via telehealth is meaningful and engaging to them. 

R, I couldn’t decide if I liked Regulation or Relationship better, but one really begets the other. If you are supporting the relationship with your child and if you’re attending to their sensory, their movement, and their emotional needs, you’re going to have a child who’s better regulated and better able to learn. So we’re going to break it down and talk a little bit about self- and co-regulation and how important that is to make telehealth successful. And then lastly, the T is for Trust, trusting in yourself and your own skill set, your own ability to be the expert in your child and additionally in your child’s resilience in making it through these tough times with you. 

So the first place we want to start is really building a schedule. When coronavirus hit, our worlds were all flipped upside down. I’ve heard a lot of people talk about how we’re all in the same boat. I think the last description that I liked fit it better, though. We’re not really all in the same boat. We have different scenarios, different socioeconomic situations, different schedules, different children with different needs, but we’re all kind of in the same ocean. 

But what we really need to do right now is, because our worlds were flipped upside down and we lost our anchors, we need to refine and rebuild some of the anchors that we have for our children. So one of the most important things we can do is really to develop a schedule again for our children. And that means therapy is included in that. 

So it’s really helpful if you can decide with your therapist doing your telehealth appointments, you know, we really want it to stay on Wednesdays and Mondays at such and such time. Put that on your schedule. Make it a visual for your child so they can kind of look ahead and hopefully look forward to their telehealth appointments like they would have if all of those other routines and anchors in their worlds were still in existence. 

Also, provide a prime place to meet for your child’s therapy. One of the beauties of telehealth is that it can happen anywhere, and that really can help your child in learning how to generalize some of the skills that your therapist is trying to support them with, right? Also, you’ve got to think about the sensory concerns or the sensory supports that your child might need in different states of regulation on different days or even within the same day. So we’ll talk about that here in a second. 

Also, I just want to remind you that providing the structure and this ability to kind of anticipate what’s coming as far as when the therapy session’s going to be, where therapy happens in the house, that helps humans cope better, not just your child. So I think that you’ll find that you’re better able to assist your child’s therapist and really assist your child in having a more productive session if you are building in this ability to anticipate. And also, that will help when Zoom crashes or your therapist’s face gets frozen or something happens that was unexpected. That will help you and your child also ride through some of those unexpected pieces. 

So when I think about the S in SMART, it’s really about that Sensory piece. And so the sensory needs for our children are kind of all over the place right now. I know for my own, quote unquote, “neurotypical” children, they’re really struggling and looking for other means to sensory supports right now. But as an OT, what we’re looking for in sensory support is that the sensation really– having your child’s sensory needs met really supports that child in being able to engage relationally, where they can learn through you, through their telehealth therapist, whatever that therapist’s background might be. 

So when we’re thinking about our children’s sensory needs, one of the prime things we can do is prepare the space that we’re going to have for the telehealth sessions. We might have a child who is what we would call a little hypoaroused, where they might be a little withdrawn, a little bit sleepy, a little underaroused, and they might need to have an area of the house or different types of seating that they can use for the session that is unstable. 

So dynamic seating, having them sitting in a rocking chair during the session, or having them sit on an office chair where you can give it a little jostle or a little spin when they when they do something that’s fun. Having them sit on a Swiss ball if they have better balance where they might be able to balance or rock side to side. Thinking about just the stability of the surface that they’re working on can help your child achieve a higher level or a more stable level of alertness so that they’re able to attend to the sessions. 

Having alerting music going. Having activities that they can fidget with. That may be like slime that’s been put in the freezer or the refrigerator that’s cold, or chewy, crunchy things, textures that might be a little bit more stimulative in nature. Having those close by, where your child, even if they’re in a different mode of therapy and they’re not necessarily working on a fine motor activity, having something there for them to fidget on could help their arousal level and their attention look a lot better. So these are more of the “gas” activities, where they’re needing to be upregulated a little bit. 

Now if you have a child who’s getting a little bit overloaded in the home environment, which, for my children, that tends to be more of the pattern that I see. There are kids all over the place. The schedule’s all wonky. They’re not sleeping well. They’re not eating regularly probably. Mom and dad are home at really weird times. Dogs are going berserk. They might need some downregulating. They might need something that’s going to cause their nervous system to kind of have a little bit of a “brake” happen, right? 

So in this situation, you might think of having a teletherapy session that’s under a table covered by a blanket. You might bring the laptop in there or use a pop-up tent. You might have flashlights or pillows that the kid can bury themselves in. You might have some rhythmical, softer music playing. Still some crunchy or chewy snacks. 

Some fidgets that are a little bit more resistive in nature, like pop tubes or Silly Putty that has that resistance. Those can all help your child brake and calm down their nervous system so that they’re able to attend. So it’s really about getting that child calibrated so that they are able to take in and learn from the telehealth therapy appointment. 

But honestly, we also need to remember that the M is important in SMART, right? That children must move to learn. And we really need to get real about our expectations for our children and sometimes ourselves, right? 

Three-year-olds, really, what research indicates, should be able to sit and listen and attend for maybe five to 10 minutes and then they need to get up and move their bodies. That’s how they’re primarily still learning from the world around them. Five-year-olds, it’s up, 15. Seven, 25. 10-year-olds, 40 minutes. So to have a realistic expectation of your child’s ability to attend will help you feel more successful and your child feel more successful at the end of the session. 

So if you’re working with an OT for telehealth, this actually might be part of your goals, right? You might say, prior to coronavirus, my child could really attend very well. They could stay organized very well. But now he’s not going to swimming. He’s not doing his horseback riding. He’s not in the gym getting his therapy with all that great clinical equipment, so he’s needing more movement built into his day. And during your telehealth sessions, they might be able to give you some suggestions of ways that you can help shape that child’s attention and arousal state a little bit better. 

So some of the movement ideas. There are so many great websites available that I’m not going to go through these ideas in great length. There are all these different ideas. And for occupational therapy and telehealth, some of these ideas might not just be a movement break to allow the “real work” to happen, but some of these ideas actually might be the goals in and of themselves. So in an obstacle course situation, you might be working on motor planning or spatial awareness or motor control, motor initiation, all of these different pieces that we know your child might be focusing on as a goal. 

And really, the objective for use of movement, and really thinking about the sensory needs that your child has, is to support the child’s window of tolerance or their “just right” arousal state, right? Because we know when the child is in this “just right” arousal state, that’s when that portal of learning and taking advantage of telehealth is going to really happen, right? 

So we all have, generally, a baseline arousal state. And I believe, because of everything that’s going on, because of the time that we’re spending on Zoom, because of the lack of exposure to all of those everyday activities that we normally have, our arousal state, our window of “just right” arousal, might be a little bit different than it normally would be. 

Now when you’re working with a therapist, an occupational therapist, like I said, your movement goals might be just to kind of get your child reorganized again so that they can attend for something else. But the movement goals themselves in OT teletherapy might be to focus on some of these objectives, really helping work on that motor planning component, helping that child enhance their body map. So they’re feeling themselves. They understand how they’re kind of glued together, and they can use that for function, like getting dressed or using a writing utensil, things like that. 

So after you think about the S and the M, we move into the A. And this is really Affect, Attunement, or that emotional attunement to your child’s needs and your child’s interests. We know that the emotional texture of a telehealth visit, and of your support around that telehealth visit, is super, super critical to your child’s motivation and ability to stay engaged in learning. 

So there are three basic foundational principles that might be really helpful when you’re thinking about this, either if you’re a therapist who’s doing telehealth or if you’re a parent on the other end of the screen who’s trying to make sure your child is getting what they need out of it. Following your child’s interests is number one. If you have a child who loves dinosaurs or who loves forks or who loves spinning or who loves music, think about ways that you can meaningfully incorporate those into the session, right? 

Good OTs are doing this in the clinic all the time. Occupational therapist is all about finding the meaning for the client. So this is really no different. You can incorporate your child’s loves into the session and build the goals around that interest. 

Don’t be afraid to ham it up. You know, Dora the Explorer, Mickey Mouse, all of these characters that our children love are like magnets to them because they use rich emotional cues to draw and hold your child’s interest. If you’re a therapist, think about this. Think about the tone of voice. Think about how animated you might need to be. Think about the facial expressions that you’re using to captivate this child’s interest and to also support the parent feeling part of the session. 

Also, if you’re not cool enough, or if all of that animation is a little bit too much for some of your kiddos and they might be a little nervous about being on telehealth, think about having them bring a favorite friend, or you have a favorite friend to introduce to them for the sessions. You might have dinosaurs just ready at the go to be your coworker that day. Or the child might bring his dog into the session or his cat into the session, and that therapy animal can then be part of the session as well. This is all in an effort to support that child’s ability to stay regulated and motivated within the session. 

Regulation is the foundation of everything else. If the child is regulated, they’re calm and they’re alert and they’re learning. And if you, as the parent or the therapist, have really supported the child having the “just right” structure to the session, it’s long enough, it’s happening in the right space at the right time of day for that child’s nervous system and what those needs are, if you’re really tuning into your child’s needs and interests and emotional motivations, you’ll find that your child can be more regulated and can attend for longer periods of time. 

Again, if your child is having a hard time staying regulated and staying attentive for a teletherapy appointment, your OT might just need to work on this as a goal. I’m working with a family right now who, when coronavirus hit, we moved into telehealth, and the child– we were working on symbolic play, and we really kind of had to backtrack a little bit and work back down toward just where this child could stay regulated and stay in engagement with the parent for a little bit longer before becoming overwhelmed. Because the child had lost so many of his anchors, we really needed to downgrade that goal. And if you don’t have that firm stability of regulation, you don’t have a lot to build on and to climb back up to those higher level goals that maybe you were working on pre-COVID. 

Now this regulation piece is going to be very supported by you, the parent and the therapist. Co-regulation is all about, my child is regulated because I help him, or this parent can stay regulated during telehealth because I, the therapist, am there to support the parent as well, right? 

Parents, therapists, we have to model calm for our kids. We have so many different things going on in our own lives right now it’s easy for us to show up for a therapy session and just kind of boom, boom, boom. Let’s do this. Let’s do this. Let’s be on a really high pace. Let’s talk really fast. Let’s come in with all of our own agenda. 

But that’s not really the way to have a productive session. The most productive session is going to come in when you can come and model calm for the child. Children are emotional resonators. They’re going to resonate off of what you bring to the session. And if you can kind of hold onto this notion and learn how to use your own regulation to support that of the child, you’re going to have a superpower and you’re going to have an advantage in helping that child stay attentive. 

Set your own boundaries. Limit your own media intake. Don’t watch it all. Don’t read at all. Turn it off sometimes. 

Read a book. Take a walk. Protect your own sensory needs, your own movement needs. Go on that walk, take that bubble bath, whatever it is that reorganizes you, because you can’t give to your child if you’re not organized yourself. 

Help hold the structure. Be the dependable, the predictable person. Hold the line. If you agree that you’re going to have sessions Mondays and Wednesdays at this time, really try to hold to when you’ve decided those sessions are going to occur. Other things as well. That routine is important, like I said, for all humans. 

And lastly, really fill your own tank. Create a space in your home that’s your own calm time, or outside in your yard. I know my calm time, my time that I refill my tank is out with my chickens and my coffee in the morning. [CHUCKLES] 

But you’ve got to find what it is for you. Don’t try to drive on an empty tank because you’re just not going to get very far. The most important thing you can give to your child during this time is kind of positive stamp on their exposure to telehealth. 

And then trust is the last thing I want to leave you with. The T in the SMART, Trust. Special needs parents are some of the most adaptive, creative, and resourceful people, humans, that exist on the planet. I have grown up around you guys, and I’ve worked with so many of you guys over time. 

Connected is really important too. I want to remind you guys that you really need to be intentional, we all do, be intentional that during these times of physical isolation that we don’t really equate that with emotional isolation. Plan things. Make yourself make time for yourself and your friends to connect. Connect with other special needs parents. You guys just being part of the session today is demonstrating to me that this is important to you, so good job for being here. 

Lastly, trust again. When there’s a rupture in interaction, if you miss an appointment for telehealth, if you have a child who runs away from the video camera– like Julie said, you know, it lasted 5 seconds the first time and today she got in a 20-minute session– remember there’s opportunity for repair. Tweak it a little bit next time. Learn from that experience, and repair it so that the sessions can be more and more productive over time. 

Lean into your relationship with your child’s therapist. I’m a therapist, and let me tell you, my most fulfilling, most meaningful time of the week is when I’m working with you and your children. It is reassuring to me. It’s an anchor to me. So your therapists are there for you, and don’t hesitate to learn and grow together through this experience. 

And also, give yourself permission to take your foot off the gas. If you just can’t muster up what you need to make a telehealth appointment, don’t make it. Cancel it. I think anybody who’s out there– the therapy clinics might not like me saying that. 

But I think everybody, all of us, can relate that there are just some days we don’t have it and it’s just not going to be a productive session if we try to force it. And our children will pick up. They’ll vibe off of that, like we said. 

So take your foot off the gas if you need to. Take a nap. Take a walk instead. And then come back in with renewed vigor for the next session. 

So the last thing I’d like to do is to just tell you guys about some other courses that we have through them through our clinic in San Antonio. They’re free. They’re online. I think we’re going to send the flyer out with all the different dates for these. They’re on Friday mornings. It’s called Coffee & Connections. And I hope that you guys can come for some real specific topics that we’re covering as well. 

And now I’d like to open it up for questions. We have just a few minutes left, so I’d love to hear from you guys. 

Carrie, the first question is going back to the affect, attunement slide. 

Yes. 

Maybe saying a bit more about that. Jackie, do you have a specific question about that? 

Oh. I’m not sure if she’s muted. I can’t hear anything. 

Yeah. So do you have anything else to say about affect, attunement, Carrie? 

I do have an important one. It really is– it’s using your own emotional cueing system to support the child and to connect with the child. So if the child is joyful, the child is feeling a little bit shy, you might resonate that back with the child to support that you’re on the same page. 

And this can be the parent sitting side by side with the child. “Oh, we are feeling a little bit shy with Miss. Carrie today. We’re going to hide from the camera. And then we’re going to come out. And look, dinosaur can do it too.” Tuning into that child’s emotional situation so that that child feels joined and safe and organized and that you’re really getting him or her. 

Also, affect, attunement can be kind of a counterbalance. So if a child is a little bit inhibited, a little bit withdrawn, the therapist might be bright and really expressive and joyful in an effort to kind of alleviate some of that child’s stress. So it’s kind of really about using your emotion to tune into that of the child’s and then to tweak it just a little bit so that the child feels seen and understood and connected. Hope that helped. 

Conclusion

Great. That’s excellent. Thank you, Carrie. OK, I think we are going to wrap it up because we are coming to the end of our half hour and we don’t want to keep people. 

Carrie, that was excellent. I really appreciate your time. And I was making notes as you were speaking, but we will have this PowerPoint presentation available on our website. So if anybody wants to go back and take a look at that, there’s a lot of information there. 

OK, so if you all could just help us out as we are continuing on in this process and let us know what you thought. And if you are looking for other resources, reach out to us. We’re always available to answer questions. 

And we will hopefully see you next week where we talk about ABA. And then take a look at our listing for the other sessions that are upcoming. We’ll be doing mental health as well as speech and language therapy. 

Thank you so much. 

Thanks. 

Thanks again to Carrie. And we’ll see you next week.

 

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