Interview between Speaker 1 (Meg), Speaker 2 (Taina Moretti), Speaker 3 (Evie Jesperson), and Speaker 4 (Anonymous)
Episode 56: Supporting Multiply Disabled Kids: Parent Perspectives
[Introductory note]
Hey, it’s Meg. Wanna hear something hopeful for the OT and SLP fields? Hundreds of y’all have enrolled in our upcoming Neurodiversity Summits. And I’m excited about this because our neurodivergent clients deserve to have therapists who are committed to learning about strengths-based practice, and listening to the Autistic community. And you, as a therapist, deserve to have a community of like-minded therapists supporting you on your journey to practicing therapy in a way that truly aligns with your values. I’ll tell you a little bit about the Summit in case you’re not in yet. We have two Summits coming up — the SLP Continuing Education Summit, which is registered for ASHA CEU’s, takes place in October of 2022. And the OT Summit, which is registered for AOTA CEU’s, is in January of 2023. There are a limited number of early bird tickets for each. At the time of this recording, the SLP Summit early bird tickets are nearly gone. The Summits are going to cover topics like autistic learning styles, disability justice, AAC, gestalt language processing, regulation and interoception, emergent literacy, and more. Each talk is designed to really impact the work you do, filling your toolbox with strengths-based ideas, boosting your confidence that you are truly engaging in best practice, and, we hope, renewing your enthusiasm for your work. You can find all the details at learnplaythrive.com/summit. We hope to see you and all of your colleagues there.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 56, which is all about supporting multiply disabled autistic kids. The format for today’s episode is a little different than usual. It’s in three parts, and each part will highlight the perspective of a parent. First, you’ll hear from Taina Moretti, whose child has Angelman syndrome. Taina is on Instagram as @aac.all.day.everyday, and the SLP she collaborates with called in imploring me to connect with Taina because of how Taina’s advocacy has really transformed the work of everyone on her child’s team. Taina talks about her experience finding the right providers for her child as well as what did and didn’t help in their family’s AAC journey. Next, you’ll hear from Evie Jesperson, whose seven-year-old, Eleanor, is autistic and has cerebral palsy. Evie takes us inside their journey in the school system, advocating for their multiply disabled autistic child, as well as into the historical struggle for inclusion for disabled kids in the school system in the United States. Then finally, we have a short clip from an anonymous caller, also the parent to an autistic kid, about bridging the communication gap between parents and providers. On our Instagram today, October 5th, you can find videos of both of the kids featured in this episode. You can find those at instagram.com/learnplaythrive, and we’ll also post the link in the show notes. Here’s Part One from Taina Moretti.
Taina:
Hi, Meg. Taina here. I want to say thank you for reaching out and allowing me to share my story and what it’s been like to support my son on his journey. My son’s name is Joey Moretti. He is 10 years old. He’ll be 11 this fall, and he has a rare neurogenetic disorder called Angelman syndrome. Angelman syndrome affects 1 in 12,000 to 15,000 live births and Joey’s specific genotype, for those that are familiar with the disorder and are curious, is deletion positive. For me, personally, I don’t believe that means a whole lot. Early on, I was really hung up on the genotypes and, you know, what that meant for him in terms of like, you know, gaining skills and all that. But our kids are rocking it; they’re doing so much, you know. Give them the tools and keep at it, and they’re gonna get it. Just be patient. It’s coming. The big celebrations are coming, I can promise you that. But you know, thinking about our journey, and trying to keep this short, I felt like the walls were put up right away. You know, when we received our diagnosis when he was 20 months of age, we were told by our neurologist, somebody that we were supposed to feel safe with, that he would never be able to walk, he would never be able to run, he would never be able to communicate or keep up with his peers. I mean, right out the gate, we were told, “He doesn’t have a chance.” You know, we’re supposed to take him home and love on him. And I’ve heard that story or different versions of it told a million times since we’ve received our diagnosis. And it’s really unfair.
Needless to say, that neurologist is no longer somebody that cares for my son. We are blessed to be with a provider at the Angelman Clinic. And he’s truly a cheerleader. So, I’m so grateful to him, and you know, his team. Because it’s been a long road, but I’ve always had somebody to lean on there and kind of give us some positive vibes, and just plans, and ideas. So, that’s great. So, I mean, that’s something that I want to put out there, you know, if you have a specialist or doctor or somebody that you’re working with that doesn’t seem to be the right fit, change it up. There should be no one there telling you that you can’t change it up. You are the one that needs to be doing everything for your kid and finding the provider that works best for them. And the same applies to your teams, you know, in your school settings, or maybe there’s a program that your child attends outside of school. If it’s not the right fit, and you don’t feel good about it in your gut, change it up. It’s not going to benefit them. And it’s definitely not going to make you be able to sleep better at night.
You know, when I think back to our birth to three experience, we had a great administrator. I mean, she, the woman that kind of like, led Joey’s program early on was his physical therapist. She was great. She was very supportive of him. She brought on our OT, who I really, really loved. They were, they were a great duo. And then slowly, we had to kind of push and push a little bit to get speech involved. And when I think back, it’s kind of comical now, because when we started speech, it was surrounded by nursery songs and this three-compartment device that had voice output. There would be a little laminated card on the back of each compartment, and Joey would hit the button, and then there would be some voice output, and then the card would disappear. That’s not communication. Where’d the cards go? Yeah, that’s a good question, right. And then, you know, the world of PECS was introduced to us. And for those that know me, know that I am not a huge fan of PECS. Everybody has their own beliefs. But when I think about PECS and I think about my child, Joey was not able to take his first step. And it really wasn’t an independent one, you know, it was a very shaky, like, kinda like, our arms were reached out, we’re gonna get ready to catch him, sort of first step, just like it would be for, you know, that 10-month-old or so, that 11-month-old that you’re like, cheering on. But my son was five-and-a-half years old before he took that first step.
PECS is a staged approach. You know, phase two is going to get the object that you want, and bringing it back to the therapist or your family member that is communicating with you. He wouldn’t have made it there like, forever. So, I mean, that says a whole lot right there. You know, we started our communication journey like, I would say like, for real, as he was entering our local school district. I was fortunate enough to attend a PODD training. For those that don’t know PODD, it’s a robust language system. And PODD stands for Pragmatic Organizational Dynamic Display. But I was lucky enough to attend a PODD training just before Joey was entering our district school system at the age of three. And I left that training motivated and I had my Angelman mamas like, surrounding me. I had the voices of many educators and specialists that I had listened to after attending an Angelman conference kind of in my ear, like, you know, our kids have the opportunity to communicate, they just need access to language. They need access to literacy. They need access to writing and adaptive writing tools, alternative pencils, like all of that great stuff. So, I mean, I had a plan, you know. We were walking into our school district, and I made that big old PODD book, and we were going to carry it everywhere. I was going to model for him. And when we walked in to one of our very first, maybe second or third PPT meeting — I can’t recall exactly which one it was — the SLP at that time basically told us that she would not attend a training to support my son. She would not attend a training to learn how to use PODD. She felt as though — and I’m just going to put it out there just in case anybody else has been in this situation before or is going through it now — she told us that my son’s language system did not support her pool of students. That that’s not the way the world works. We don’t have one language in this world, right? We chose this system as a family because that is the language that is going to be spoken in our home, right. It is what works best for our child; it is what works best for our family. And there are several reasons why we chose PODD. And I’m really open about that. And we can take that, you know, into another conversation if anybody would like to. But, you know, at that point in time, I knew that that therapist was not the right fit for my son, and was not the right fit for our family. She did not support the long-term goals that we had for him. So, the plan changed, right. The team members needed to be shaken up a bit. And they were.
And slowly, we’ve been finding our way, you know, we are in a different area now than we were all those years ago, you know, we had a lot of challenges. Every time we were at the table for PPT, or some people refer to them as IEP meetings, I always felt like it was a war. I felt like that we were going to battle. I felt as though it was us versus them versus us collaborating. They’re called PPT’s — Planning and Placement Team — we’re supposed to be a team. Like, you know, setting a plan for these amazing humans so they have an opportunity to be a part of their community. And I’m a huge advocate of inclusion as well. And that was a big thing. Like, I don’t want my son put in a classroom — in a room, rather — surrounded by four walls and one other individual, because that’s not the way life happens. We are surrounded by distractions, other individuals, and trying to control everything that’s going on in our bodies surrounded by all of the things going on around us. And when you’re in a classroom by yourself with another individual, that’s not the way the world works. So, these are all the things that I’ve fought for over the years. But what I’ve felt like is that those that I have brought ideas to way back when, you know, some of them felt very guarded. They felt like I was making it seem as though I knew more. And it’s not that I knew more. It’s just that I knew there were greater possibilities for my son than what I was being told, let’s put it that way.
If I could share anything is don’t take no for an answer. I really respect those team members that I have today and some of them that I’ve had in the past that have come to me and said, “I don’t know, Tai, I don’t know how to do this.” And I respect that so much. I would rather somebody on my son’s team tell me they just don’t know so we can learn together. Because guess what, I don’t know why either. I find the specialist, I find the gurus within certain areas, whether it be communication, whether it be reading, whether it be writing; I’m going to find those individuals and figure out how to apply all of the content necessary to allow my son to communicate, and read, and write. So, if there’s anything that I can say to therapists or other team members is, please don’t shut parents down when they’re asking for more, when they’re asking you to support them on their journey. We have our kids for a lifetime, right? Teams have these kids for a blip of time. Maybe it’s three years, maybe it’s five years, maybe it’s a little greater than that. But help us develop a plan so then, as the child moves into the next phase of their life, or their educational career, they are set up with a plan and they can carry on from year to year versus starting from scratch over and over again, or just feeling completely defeated, and that they have nobody on their side. So, I mean, I can talk a whole lot about this.
So, I hope this just kind of shares a little bit of our story. And if there’s one thing I can end with is just, you are your child’s greatest advocate. And at the end of the day, you just gotta keep fighting regardless of how heartbreaking it might be sometimes. Dust yourself off, and take a deep breath, and keep moving. There are people out there that want to support you, I can promise you that. We are really lucky to have an amazing AAC specialist in our corner that works with us privately. And I’m really fortunate to have an SLP and a Sp-ED in our district that supports us 110% now. We share ideas, we collaborate, we bounce ideas back and forth, whether it be through email, or text, or in person. And the other thing I’d like to say is get your private specialists in touch with your school team because when they’re communicating, your kid is globally supported. So, that’s a little bit of our story. I hope this helps.
Meg:
I’m so grateful to Taina for sharing her experience. If you want to dig deeper into helping connect kids with truly robust AAC, go back through our old podcast episodes. Episode 27 in particular is a great place to start. We also have a free training on teaching AAC to foster truly autonomous communication and you can find that at learnplaythrive.com/AACmasterclass. For Part Two of this episode, I’m going to play you part of an interview with Evie Jespersen. Evie is the parent of Eleanor. Eleanor is seven, autistic, and has cerebral palsy. I’ll tell you a little bit about Eleanor’s story. She was born at 32 weeks and Evie’s experience of dealing with the medical model and advocating for her kid started immediately. The way Evie describes it, she learned right away how to talk to medical providers, how to ask questions, how to challenge the system, and how to go with her gut. She had to learn all of this even before she brought Eleanor home from the hospital. Eleanor started in early intervention, physical therapy, and occupational therapy from a really young age. And Evie describes the parallel experience of therapists operating in the medical model who would say, “Here are the milestones she hasn’t met. Here’s what she needs to do in our session today to meet them,” while others celebrated Eleanor’s strengths, learned about who she was, and followed her lead. So, Eleanor is a strong advocate for herself, the way her mom describes, that this will serve her well in her life. So, the therapists who really learned about her and worked from her strengths were so much more successful at forming a meaningful relationship with her and supporting her development. We also know from research that the way we, as therapists, talk about kids impacts the way parents see their kids and changes the quality of those interactions. Evie described seeing strengths-based therapy in this way. She says, “It was really powerful to see somebody in the medical system really following Eleanor’s lead and really gave us a lot of power as parents to also follow Eleanor’s lead and go with our gut.” So, Evie realized Eleanor was autistic from a young age, which she took it in stride, accepting her as the person she had always been, though they didn’t seek a formal diagnosis right away. Evie struggled to find a therapist who could support Eleanor as an autistic child who also had a physical disability. For instance, she couldn’t necessarily access the sensory supports the OT provided because of her cerebral palsy. And as Eleanor entered the school system, she continued to struggle to get the right support given that Eleanor was multiply disabled. Here’s Evie discussing the transition into the school system when Eleanor was three.
Evie:
So, kind of the first thing that we ran into is everything the school system and the people working within that system saw was, “Eleanor has cerebral palsy. Eleanor uses a wheelchair. Eleanor’s hands work differently. So, we’re going to do PT, we’re going to do OT, we’re going to do speech. Check. Basic physical disability.” So, in that context, when we would talk about her needs for sensory regulation, when we would talk about the way that she uses language and communicates, we were told, “Oh, yeah, those needs are already being met, because PT, and speech, and OT will work on what they see.” And that makes sense; that makes total sense. But when Eleanor started experiencing like a severe amount of sensory overload and meltdown, those needs weren’t taken seriously. We were told her IEP doesn’t specifically name the need for accommodations. And you guys don’t know that she’s autistic. And so, that’s when we really headed for a diagnosis.
And yeah, absolutely, at the time, the school system and some of her, you know, private therapists discouraged us from heading for a diagnosis. They would say things that we’re all used to hearing, right, like, “Oh, she’s already different enough from her peers. She uses a wheelchair. Like, we don’t want to add a label. It’s all about the label.” And, you know, the idea that that label is less than, and kind of like that’s what we’re all fighting against, right. But we knew that naming things has power. Labeling her as autistic wasn’t bad. Having a diagnosis wasn’t going to change anything about what we knew about Eleanor as her parents. But having a diagnosis would be for Eleanor. Having a diagnosis, having language around who she knows herself to be as a person, could help her form a positive identity, but also give her clear language to access the tools that she would need. And we saw it as a way to have those needs to be taken seriously, like in her IEP, also.
We’ve really found that for the most part, most folks comprehend cerebral palsy and they comprehend autistic but you put those two together, and they kind of just don’t know what to do. So, I kind of find that most people that work with Eleanor work with her as if she’s physically disabled and nothing more. Which is a problem because when Eleanor’s herself, her sensory, her energy, her regulation, her language, her learning style, when those things aren’t also being cared for, she ends up in overwhelm and meltdown naturally. Then, you know, with some exceptions, that overwhelming meltdown is treated as a fit, or a tantrum, poor social skills, refusal to do work. I’ve had adults tell me that Eleanor is rude. None of which is true to Eleanor as a person. I mean, they’re bad assumptions for any kid, but disabled and autistic kids really shoulder a lot of that judgement. And what they’re missing is that they don’t see that Eleanor’s under supported.
Meg:
That makes a lot of sense. That really fits with what I know that I have done in clinical practice and what I think a lot of us do, is we sort of lazily take this path of least resistance with our clinical skills. And we might say, “Oh, I know how to do adapted keyboarding,” or whatever it is that feels like a strength to us and we kind of just hope the rest of it goes away if we don’t know what to do. Which it doesn’t go away. And that’s so harmful for our clients, especially our autistic clients who, like you’re saying, wind up being interpreted ungenerously as a behavior problem rather than a child who needs more support. So, you’re really needing folks in the school to see all of Eleanor’s strengths, all of her needs, to see her as a disabled and an autistic person, and be able to properly support her. I imagine there’s a lot of advocacy happening from you. Can you tell me what advocating for Eleanor has looked like for you?
Evie:
Yeah. So, Eleanor is autistic and disabled. We’ve spent a lot of time sitting with the history of disability rights, and specifically as it relates to education. And kind of like addressing Eleanor’s needs in the school from a disability rights perspective, I think, changes everything in the way that we go about advocating. Because of the history of disability rights, I see the need for change in the education system around autism; also, fundamentally, as a civil rights issue. I think it’s a huge foundation and really the key to advocating for autistic kids, their education, and also their place in the community. I think, for most people who are non-disabled, it’s easy to think that after the ADA, after what became the IDEA, problems were solved, right? We get curb cuts, we get ramps, you know, disabled students can’t be restricted from a gen-ed classroom based on their disability. Segregated education, where those disabled students were refused to a school or stuck in a basement classroom inequitably is gone, right. That’s the assumption. And that’s wrong. You know, that’s still not true across the board for physically disabled students either. But right now, we’ll think about it for autistic students.
So, from my perspective, for autistic students, segregated education still exists. It continues by the name ‘self-contained’, it continues by the name ‘AU rooms’. And it’s not because those students aren’t cognitively on track with the curriculum. For the most part, you know, I think autistic students aren’t in self-contained classrooms because it’s safer for them, or more supportive for them. They’re in self-contained classrooms because the system’s educating those students and teachers haven’t been willing to do the work and pay the cost of inclusive education. You know, it’s so clear now, if a school building doesn’t have a ramp, they must, without question, legally are obligated to add a ramp. You know, in that case, if a physically disabled student can’t access their education due to stairs or the lack of a ramp, it’s a civil rights issue. That’s what — that’s what creates the framework around that need. Like I said, the ramp is installed, and elevators installed, a stair lift is installed.
But when an autistic student can’t access their education due to being under supported or misunderstood, it’s a student problem or a parent problem. But really, this is still an access problem, and still a civil rights issue. You can kind of even think about students who don’t speak English as their first language. You know, they have ESL support, they have interpreters. You know, Eleanor is a gestalt language processor and she communicates through her autistic lens. How does the education system approach autistic students who may need support for communicating? Self-contained. Segregated. That feels, for the people in the system, too much of a leap. And they still don’t know what to do with those students. It’s not as concrete as, “Build a ramp.” So, those students are still self-contained in segregated education. You know, and I’m talking a lot about the — ‘the systems’, right.
And we’re a part of the system, you know, the government is part of the system, teachers are a part of the system, the heads of our special education departments are a part of the system. Therapists are part of the system. We’re not fighting against all of those people, right. Like, obviously, so many of them are actually coming alongside us. But I think the people who work within the system and are kind of trying to carry these questions and carry this curiosity, and, you know, fight alongside us and advocate alongside us, the system kind of silences them as well. You know, we’ve experienced some of Eleanor’s therapists being afraid to speak up or being punished because they spoke up. And that kind of perpetuates the system. If parents are silenced, and people within the system who are trying to make change are silenced, we kind of like return to the status quo, right?
There’s this great Judy Heumann quote. I’ll find it for you. Judy Heumann says, “The truth is, the status quo loves to say no. It’s the easiest thing in the world to say no. It’s easy, so it just continues.” I think that, as parents, we also kind of end up fighting things individually. And I think the system historically wants us to think that it’s our individual problem, right. And honestly, at the end of the day, I think parents are exhausted from fighting for the right for their kid to just exist. Perhaps I don’t have access to time, finances, education, language, to know when something is not equitable, to know how to question it. And then, as this all kind of continues, the whole system is perpetuated. So, autistic students remain segregated. Neurotypical peers do and act as they’re being taught by their adults. They see the autistic students as other, less worthy, and bad. And then, they take those beliefs into adulthood. So, I think when you see all of this through the lens of disability rights, that kind of changes things. And it gives you a framework. It gives you the space, the power, the language, and the backing of the law to advocate differently.
Meg:
Yeah, this really resonates with the last few podcast episodes where it keeps coming up that inclusion is happening in this token way that isn’t accessible to everyone. And you’re saying, parents are told it’s a behavior issue, this is a ‘Your kid’ issue. This is a ‘You’ issue. You don’t have the collective power of parents, of parents who have, like you said, the law behind them to challenge it. Because really, they don’t want you to have that. And people are time stressed, people are resource stressed; it’s not easy to do. And I hear you saying that looking at the history of the disability rights movement informs what you ask for, demand, strive for Eleanor in school. Without that you can believe the narrative, right? This is an ‘Eleanor problem’. This is just the way it is. This is what inclusion is supposed to look like. And you’ve been able to look historically and say, wait a second. We’re not the first people to ask for this. And we’re not asking for something even at this point beyond what is legally, supposedly provided for us as a civil right. How does this impact how you address Eleanor’s settings and her supports in school?
Evie:
Yeah. So, setting is a really interesting question. You know, clearly, we really believe in the power of inclusive education. And so, we push for Eleanor to be in a gen-ed classroom. You know, due to the pandemic, we totally skipped over kindergarten. So, you know, she didn’t actually enter the school system until — for first grade — until this past December. So, it’s all kind of new. But as Eleanor was entering first grade, we pushed for Eleanor to be in a gen-ed classroom, and we asked for an aide, you know, day one. And, you know, we were told what everybody else was told. Budget, we need data, having an aide is more restrictive, kids aren’t going to want to talk to a kid who has an adult right with them. But having an instructional aide in a gen-ed classroom is absolutely less restrictive than being in a separate, segregated classroom. It’s less restrictive, but more expensive. And that’s kind of the crux, right.
And, you know, in my experience, I see schools avoiding this altogether by working the question of education setting from the wrong way around. Most people I talked to, especially for kids who are multiply disabled or autistic, like Eleanor, they’re first assumed to be in a separate setting. That’s where we start. And then, the burden is on the parents to question the system, or to prove why that’s an inappropriate option, or to seek legal counsel. And that brings up those same equity questions we talked about. But the thing is, the IDEA specifically states the complete opposite. Start with the assumption of a general education classroom and work your way from there. The IDEA outlines to the maximum extent appropriate, children with disabilities are to be educated with children who are not disabled and special classes, separate schooling, removal from the regular educational environment should only occur when educating in the general classroom with the use of supplementary aides and services cannot be achieved. And, you know, that’s just not the way that the schools are going about it.
Meg:
I’m gonna repeat that back. That is worth saying again, because I think therapists going to IEP meetings need to know this and might not, to advocate for our autistic and multiple disabled students. What you just said is that IDEA says that disabled kids should be in the classroom with their non-disabled peers, unless the use of supplementary aides and services has been tried and it still isn’t working. Is that right?
Evie:
Yeah. Absolutely. And, you know, not only that, but the IDEA also outlines that, I think it’s listed as ‘high quality, intensive pre-service preparation and professional development for all the personnel who work with children with disabilities’. So, we’re talking the teachers, we’re talking the classroom aides. You know, clearly the therapist and, you know, related services. The art teacher, the music teacher, the PE teacher. All of those people who are working with disabled students — which includes autistic students — by the letter of the law, they should be provided, before they work with those students, the preparation and professional development that they need to ensure that they have the skills and knowledge ready to improve the academic achievement or functional performance of those students. You know, I think, thinking about autistic students through that lens really shifts how we approach their education and what we demand from schools, but also what we want for educators.
You know, I get it. Educators are underpaid; schools are underfunded, understaffed. The IDEA has never been fully funded as it was intended. The system is inequitable for, you know, nearly everyone in some way. But that isn’t an out. It doesn’t make it okay. It does make it something to fight for. When federally funded programs and buildings were inaccessible to disabled folks through the lens of civil rights, disabled activists protested. They crawled up the stairs, they staged the famous 504 Sit-in’s. And not with that many people. It didn’t take that many disabled activists and disability advocators to cause that change. You know, before the Section 504, and the ADA, and the IDEA, disability had been defined by the medical model of rehabilitation. And that really meant it was seen as charity. It was Section 504 that recognized that society historically treated people with disabilities as second-class citizens. It was based on deeply held fears and stereotypes that those attitudes had translated into pity and discrimination. And understanding autism as a part of that history is really important.
Meg:
So, I’ve been in the school system, and I’ve heard sometimes the very uncomfortable ways that parents who advocate are talked about or are treated by the professionals on the IEP team. It can be hard to hear a parent asking for something that isn’t readily available the way the schools are set up now. And our response shouldn’t be silencing and shaming. It should be coming on to the same team to support the child, to support the spirit of IDEA more authentically. And most of us don’t have a lot of experience doing that, and haven’t seen this model very well. So, for therapists and teachers who are on the receiving end of parent advocacy — which doesn’t have to be perfect, the burden isn’t on the parent to state their requests in this perfectly accessible, appropriate, well-worded way for the team to be able to hear it. That’s not what it has to be in order to be heard. What do you advise professionals to do when we are hearing parents advocate? What’s one best next step or action for us to take?
Evie:
So, I think, in this position, I would really encourage teachers and therapists on the receiving end to take time to process what is received, and then to remember that parents are not questioning your intentions. The things that parents are asking for, and questioning, and pushing back on is systemic. We’re questioning an inequitable system. Like you said, not just in terms of what resources our kids have access to, but also the inequities that lead to a lack of disability and autism-affirming education and training for the teachers and the therapists. Like, okay, so for example, here’s something that we experienced. About a year ago, we consulted with Rachel Dorsey on communication goals. And Rachel taught me that Eleanor is a gestalt language processor. I already understood how Eleanor communicates. And I had already seen how she progressed through the stages of gestalt language acquisition. But I was never told, “This is what that is. This is a thing; it’s valid. It’s fine.” So naturally, as also neurodivergent, my new hyperfocus became learning as much as I could about gestalt processors. So, if I then take that new information to a speech therapist who’s been in the system for a long time, and question best practices and methods, I’m walking in with something you’ve potentially probably never heard of and I’m questioning your expertise. You know, recently I even asked a student in the speech program of a big university that has a reputation as an authority on autism, and that student had never heard of gestalt. So, you know, it’s a trickle down.
Non-autistic people make decisions about what autistic or disabled people need. They design the curriculum to train the teachers and therapists to do the work. The teachers and therapists are failed by the higher education system, and they don’t have the tools, research, or evidence from actual autistic experience. So, you know, the system isn’t just failing our kids and what our kids receive in education. The system is also failing the teachers and therapists who were, you know, have great intentions and are working really hard to help and provide for our kids. So yeah, I think my best advice is to sit with the questions. Stick with the pushback. Be curious about who is being served, and the outcome of whatever is being questioned. Be curious about who designed the tools and methods that you’re currently using, and for what purpose. For us, that looks like pushback about the use of social stories. Instead of getting defensive, kind of be an investigator. Gather more information, try and find some of the latest research. And remember that we’re all working against an inequitable system. And through the lens of disability activism, parents, and teachers, and therapists, and the education system should all be moving in the same direction, fighting the system to get the resources that our kids need.
Meg:
That’s really important advice, that we can feel our own imposter syndrome triggered by the parents. We can feel those feelings, and we can still sit with the content of what the parent is giving us without reacting, without immediately defending ourselves, or trying to invalidate what the parent is saying or asking for. We can make time and space to hear the parents, remember that we’re on the same team. And that, like you said, we’re on the same team against a system that makes inclusion really hard. So, how can we, instead of puffing up and saying, “I know what I’m doing. I’m a professional,” how can we really act on the same team with the parent, with the other providers, with the child to help the child be truly accepted and included in their school environment or wherever they are? Evie, if there’s one big takeaway that you hope therapists get from this conversation today, what would that be?
Evie:
I think I really want to encourage therapists to offer parents some of the bigger picture that their kid is a part of. I think that therapists and parents both need to be more curious about and be educated on the history of disability activism, the history of the ADA, history of the IDEA, and consider kind of like where we sit within that framework.
Okay. So, to sum up, kind of part of what we’ve been talking about with this framework, I want to read a really short section from Judy Heumann’s memoir called ‘Being Heumann: An Unrepentant Memoir of a Disability Rights Activist’. So, Judy says, “Part of the problem is that we tend to think that equality is about treating everyone the same when it’s not. It’s about fairness. It’s about equity of access. And equity of access, whether it’s housing, health, education or employment, looks different for someone like me, and the hundreds of thousands of us who cannot do things the same way than it does for the majority of people who can. That involves ramps, wider doorways, bars, sign language, interpreters, captioning, accessible technology, audio descriptions, documents in Braille, and personal assistance for people with physical disabilities, as well as those with intellectual disabilities. When this is not understood, we get framed as complaining and selfish.” And I think that’s part of how we come off when we’re challenging the system in IEP meetings, or when we’re questioning these therapists, is as complaining and selfish. Even though we’re simply asking for the same rights as everyone else.
Meg:
We have a selection of book recommendations from Evie in the show notes at learnplaythrive.com/podcast, and you can find a video of Eleanor on our Instagram at instagram.com/learnplaythrive. Part Three is from an anonymous caller sharing with us her insights on bridging the communication gap between parents and providers.
Speaker 4:
I have two words to share — curiosity and negotiation. The idea of embracing curiosity first came across my path in 2020, in the beginning of the pandemic. I work in the medical field and we were experiencing interactions with families whose viewpoints did not necessarily match those of their providers. In fact, much of our culture these days is divided on sensitive subject matters. This feels uncomfortable and conflicted. You’re on one side; they’re on the other side. How do you resolve this? We do it by being curious. I’m the mother of a spectrum child. Conflict is what so many of us parents feel. We have our family needs, the school has their needs and opinions, and the medical therapy community adds just one more layer in this complicated mix. It gets conflictive and uncomfortable. These past two years I’ve been exploring using curiosity to help me through this conflict. Curiosity is the ability to take a pause in the conflict and assume a neutral stance. It is the ability to come with a listening posture and a true desire to understand before being understood. More than once, I have benefited from curiosity as it drove me to look deeper into evidence-based research. And on occasion, I’ll admit, my stance even changed because of it.
Yet, the goal of curiosity is not to change the opinion of other people. It is to give them the respect of being heard and understood, something we all want others to do for us. By being curious, we can move forward to conflict resolution and negotiation. I am not an experienced negotiator, but my husband, who has an MBA, takes on negotiation like a game. It is strangely an enjoyable experience for him. I can’t say the same for myself. The goal of negotiation is to find the common ground. In its simplest form, ask yourself, what is it that you need to reach an agreement on? It should be something that can be a common goal among your team members. Changing someone’s opinion or belief likely will not result from negotiation, but you can agree on things that will help everyone reach that common goal you share.
A while back, I was conflicted with my son’s school. The school is amazing and does wonderful things for him. But I can’t say that I’m always totally in agreement with their strategies or beliefs. My son needed help with a specific skill. Why he was underdeveloped in that skill is where we differed in our opinions. The common goal? We both knew he needed help to develop that skill. Our end goal was for him to get some external therapy that he needed to support this skill development and to have the flexibility in his school hours to accommodate this need. The school, likewise, was interested in our son meeting this specific academic skill. During the meeting, several opinions, feelings, and theories were out there on the table. But my husband had wisely coached me to do nothing more than focus on the common goal. Anything that was mentioned — even the stuff that maybe I didn’t quite agree with — that did not take us to the end goal was irrelevant, and I mentally just let it fly right past me. It wasn’t important that we line up eye-to-eye on everything. If in the end, our common goal was met, and we could walk away respecting each other’s space, professionalism, and investment in our son. What seems so conflicted at first ended with both parties satisfied.
Meg:
I’m grateful to this caller, because how to collaborate with parents who want a different approach is one of the most common questions I get from therapists. And this caller brings us back to finding the common goal. Parents want their kids to be authentic, to be loved, to feel competent, and to thrive. And so do we. Thanks for listening to this episode.
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Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
