My testimony against SB 3: Why an educational savings account would be useless for my son

On March 21, 2017, I went to the Texas capitol to testify against SB 3, the newest salvo in the GOP’s school choice crusade. For those who have never testified at a state hearing and want to know what to expect, I will write elsewhere about the process and my experience. The TL;DR version: I didn’t get to give an oral testimony, but I was able to submit a written testimony. I am sharing my public testimony in the hopes that the issues we face make it to the intended congressional ears.

 

***

SB 3 Testimony

My name is Felicia Miyakawa and I represent myself. I live in Round Rock. I am a special education advocate and a mom of two kids, both of whom have qualified for Special Education services under IDEA. Thank you for the opportunity to speak to you today in opposition to SB 3.

I would like to share with you how this bill might impact my 10-year-old son. After 2 years of homeschooling, he has chosen to return to a traditional school setting; he will enter middle school this fall. My son has asked to have input into which school he attends, and we have been considering several options. We applied to an excellent charter school in our county. Since it is a public charter school, it would offer my son the protection of IDEA. But the school, which admits students through a lottery system, is overwhelmed with applicants; he’s 104th on the waiting list for next year. He is also on the lengthy waiting list for a private school that has an excellent track record for kids like him, kids who are twice exceptional, who are both gifted and have learning disabilities or developmental disabilities. This private school, however, could reject his application for any reason. If we are able to “choose” this option, we would not only have to pay sizeable tuition, we would also sign away our rights to IDEA protection (and this is a point that I will come back to). As a third option, which currently seems like our only option, we can enroll him in his zoned public school, which offers the protection of IDEA, assures transportation, and is tuition free. But the classes are large, and teachers are poorly trained to deal with kids like him. These are our so-called choices.

So what would this voucher system do for him? At present: nothing. I would like to draw your attention to eligibility requirements for the proposed voucher program. Section 29.354, paragraph 2 includes “attended a public school during the entire preceding academic year” as a requirement for enrolling in this program. Because my son has been homeschooled for 2 years, he would be ineligible for this voucher plan. And he’s not alone. We are what is colloquially called “accidental homeschoolers.” We did not intend to homeschool. We began to homeschool my son when it became clear that the school system was failing him and we had already worked our way through a spectrum of more restrictive placements. What I learned after I began this homeschool journey is that there’s a huge and growing number of “accidental homeschoolers” all over Texas. What do we have in common? Our children need special education services and either did not receive them at all or did not receive sufficient or appropriate services. (For recent evidence, I would point the members of this committee to the Houston Chronicle’s exposé about TEA’s 8.5% cap on special education. Brian Rosenthal’s essays were full of parents who, like me, pulled their kids out of the system when the system failed to deliver adequate—or even basic—services.) Anyone who has had to pull their kids out of school because the schools didn’t deliver appropriate special education services would be shut out of this voucher program.

In 2012, our lieutenant governor said: “If… a family feels they need a better opportunity, they should have that right… And especially, students with disabilities and autism, to be trapped in a school that can’t help you get over a disability, is a sin. And we’re going to stand up for that community.” But this voucher system will not achieve greater protection for disabled kids. Even if children with disabilities are accepted into private schools and can afford to go, they will lose their federal protection under IDEA and Section 504. Section 230.053, paragraph c of this bill specifically instructs private schools to give parents notice that their disabled children will receive no federal or state protection. Without this protection, children and parents would have no recourse, no way to fight for a free and appropriate education, which is their legal right.

I respectfully ask that this committee, and the legislature as a body, turn its attention back to enforcing and funding the laws that already exist, rather than putting our vulnerable children at even more risk.

Thank you again for your time. I would be happy to answer any questions.

Advertisements

Intersections: Activism and Advocacy, part 2, the POWER edition

In this blog series, I’m summarizing some of the major points of Daniel Hunter’s Building a Movement to End the New Jim Crow: An Organizing Guide, and suggesting ways in which we can apply the ideas to intersections of Disability Rights activism and Special Education advocacy. If you missed part one, you can find it here. This post will discuss (some of) the second chapter of Hunter’s guide. There’s so much to pull out of this chapter, but for the sake of honing in on the nexus of Disability Rights and Special Education, I’ll limit my discussion to only one of his main ideas: power.

“Power” has many meanings within the context of movements. I want to address multiple intersections of power: how oppressive systems hold and maintain power; how movements can put pressure on and dismantle oppressive power structures. In a subsequent essay, I’ll look at the human cost of standing up to power, as well the ever-important question of who should hold power / be empowered in movements.

Power Structures

One of Hunter’s crucial points is his explanation of how oppressive structures maintain and control power. Hunter addresses this issue not only to instruct us in how to take down oppressive systems, but also to remind us that unless we pay attention to how power structures tend to be supported, we face the possibilities of (a) building unstable movements, and (b) unwittingly replicating oppressive structures within our own movements. It is important to understand that oppressive systems are not as structurally sound as they may seem. As Hunter points out, “an oppressive system that relies on abusing and degrading humans is insecure––it requires being held up by pillars of support. Some of these pillars include social systems that give the structure legitimacy, such as laws, courts, media, and schools that train us to obey. Other pillars include people who may oppose the system but are complicit in keeping it running–– including administrators, guards, chaplains, janitors, construction workers to build prisons, and so on.” His examples here are specifically about the pillars of support that keep the prison industrial complex intact. Compromise one or more of these pillars, Hunter writes, and we can begin to topple the entire system.

What pillars hold the Special Education system up? School administrators, legislators, teachers, school psychologists, local school boards, State boards of education, State education administrative agencies, school districts, and attorneys who represent school districts in an effort to minimize parent and student rights all contribute to shoring up Special Education. I would also argue that advocates who are so closely connected to the system that they do not question its limitations also help to maintain the system. Special Education is not inherently oppressive by design, but the current delivery of services, locked up in philosophical questions of who is “normal” or “typical” and who should have the right to be in particular classrooms, is not just flawed; it is ableist. And we support the system without thinking much about its ableist underpinnings.

And if, at this moment, you are thinking “Not all [teachers, administrators, school board members, etc.] are ableist!” please remember that I’m not naming individual people; I’m describing how people assume roles within systems and contribute to their perpetuation. I’m reminding us that we all have to take a meta view of the system(s) in which we work and remember why we do what we do in the first place.

(Dis)Serve and Protect

I’m about to make a big leap and equate the Criminal Justice system with Special Education. That feels uncomfortable, I know. Consider the network of laws that underlie the Criminal Justice system, some of which are about how offenses against society are punished, and some of which are about the rights of the accused. (For reference, see Title 18 of the U. S. Code: Crimes and Criminal Procedures.) We also have rights protected by the Constitution: The First Amendment gives us freedom of speech, freedom to assemble peaceably, freedom of the press, and freedom of religion; the Fourth Amendment protects us against unreasonable search and seizures; the Fifth Amendment allows us the protection of not incriminating ourselves; and so on. (For a handy primer on your basic rights, see Practical Ways to Exercise Your Rights Under a Trump Presidency, by Dani Alexis Ryskamp.) When these rights are trampled, we have the right to legally fight back. We also have a right to representation, a right to due process (a trial), a right to be informed of the accusations against us, and a right to a jury of our peers. Sounds great, right? With all of these rights, surely only “guilty” people are incarcerated.

Nope. I’m sure there are experts who will argue that we’re better off than when we were before these laws were put into place, but as many criminal justice activists, advocates, attorneys, and both formerly- and currently-incarcerated people will testify, the system doesn’t always protect those whom it was intended to serve, and it certainly doesn’t protect Black and Brown lives (which is, of course, a milquetoast re-stating of the entire point of Michelle Alexander’s book, The New Jim Crow).

What about Special Education laws? The laws that were first crafted to protect disabled children in schools—such as Section 504 of the Rehabilitation Act (1973) and IDEA (1975)—have been game changers. They were created to ensure basic educational rights and to give parents recourse should those rights not be honored. Before the 1970s, millions of children were denied even a basic education every year. As in: disabled children were not allowed to go to school; they had to be kept at home or were institutionalized. Special Education laws ensure the possibility of a Free and Appropriate Education. When they work well, the laws also help families build connections between schools and community services to create a network of support for disabled students before they leave school. Special Education laws have helped to raise graduation rates among Disabled students, and have empowered more to seek out post-secondary education. But. Like the Criminal Justice system, Special Education is now an overloaded, underfunded, and inefficient system, a system wrapped in endless regulations originally intended to protect, but that ultimately entail a high human cost. Like the Criminal Justice system, Special Education no longer serves its intended function well. The human cost is high in both cases: innocent people go to jail, and students who need an individualized education are warehoused or denied services, or drop out after years of frustration. And too often, these same children end up in the school-to-prison pipeline, which brings us back to the gross injustices of the Criminal Justice system.

law-scalesCrashing the system

So if we understand that a system is built on pillars and we decide a system needs to be dismantled to pave the way for something new, how do we—as part of a larger movement—compromise the strength of a pillar to undermine the power of a system? Hunter offers several examples of how this has worked in real-life movements. One such example is of Serbian citizens who fought against Slobodan Milosovic by refusing to participate in day-to-day activities that maintained the normalcy of the government. This nonviolent approach was ultimately successful, and Hunter attributes the success to mobilization of a massive number of people who were able to identify the pillars and dismantle the pillars one by one. Rapid mobilization efforts and clear-minded understanding of how power works (translated into specific campaigns), are both necessary for movements to grow. (Similar suggestions about effective means of resistance in our post-election society are popping up. Just one example: On November 14, David Cole, incoming legal director of the ACLU, published what is essentially a guide to non-violently bringing down the Trump agenda.)

Hunter also describes in detail what he calls a “crash the system” approach, a way of overloading a particular system by vigorously exercising particular constitutional / legal rights. Hunter cites the work of Susan Burton and her program A New Way of Life for developing a particularly effective “crash the system” approach within the criminal justice system. Burton’s idea was simple: provide legal resources to large numbers of people so that they can collectively demand their constitutional right to a jury of their peers rather than accepting plea-bargains. This approach was necessary because most criminal court cases are resolved through plea bargains, primarily because of harsh mandatory minimum sentencing laws. (How many is “most”? Hunter says 90% of cases are resolved through plea bargains. Findlaw agrees with 90%. Tim Lynch puts this figure at 95%. Jed Raskoff places the number of Federal Court plea bargains at more than 97% of criminal cases. Any way you slice it, the number is YUUUGE.) Prosecuting attorneys convince people that if they go to court, and if they’re found guilty, the minimum sentence will be very harsh. Their alternative is to accept a plea bargain, a compromise that leaves them with a guaranteed lesser sentence in exchange for “admitting” guilt. What these folks give up in these “bargains” is their constitutional right to a trial by a jury of their peers.

Courts push plea bargains in part because the system is so over-loaded with cases; it takes much more work and time to assemble a trial by jury. But this system also ensures that many innocent people go to jail. Burton’s theory was that if more and more people requested their constitutional right to a jury of their peers, the system would become clogged with cases; judges and prosecutors fall further and further behind. To explain the possible outcomes of this move, Hunter offers us a thought experiment: “Imagine how this might play out: In a small city, 100 people refuse to accept plea bargains. They collectively demand jury trials. The already stretched and overloaded city judiciary scrambles to arrange jury trials. Those who are unable (or who refuse) to pay their bond are stuck in jails. (This tactic, as any to shift a system this huge, would require suffering.) Others who are released tour the country to rally support.” More people join, and then an avalanche of more. As local jails and systems are flooded, lawyers file appeals to ensure the right to a jury trial, and public protests support the movement, the system falls into chaos. And then we would need to redesign the system from the ground up.

Crashing the System in Special Education?

What “crash the system” analogy might we make in Special Education? By far the strongest tool in the parent toolbox is the Independent Educational Evaluation (IEE). When a child is evaluated for Special Education services, the school district arranges the initial evaluation. Parents then have a legal right to get a second opinion at no cost to them, an IEE performed by an expert not affiliated with the school district. (See, how, why, and when to request an Independent Educational Evaluation (IEE).) When parents request an IEE, schools must either comply or take the parents to court. After an IEE has been completed, schools are required to “consider” the outside opinion when services are offered to the child. When used carefully and purposefully, IEEs can help parents hold school districts accountable and push school districts to provide an individualized education for every child, as provided by law.

I haven’t been able to find data about the frequency of IEE requests. But to extend our thought experiment, let’s imagine what might happen if every parent of a child who is identified as needing Special Education services requested an IEE. Let’s imagine that in an elementary school that enrolls 800 students total there are 100 kids who have qualified for services under IDEA. (I’m using about the national average here of 13%, but in my own state, the average is 8.5%; hundreds of thousands of children are being underserved, as Brian Rosenthal has revealed.) If the parents or guardians of all 100 kids requested an IEE from that school alone, that would mean that the handful of local private evaluators—including Occupational Therapists, Speech / Language Pathologists, Neuropsychologists, Developmental Pediatricians, and other specialists—would need to weigh in on every case, working within their private case load. It would not take long for the cases to become so backed up that schools could not deliver IEEs within the required time frame. Perhaps local hearing officers would be encouraged to find more often in favor of parents when they appeal, to help keep the system running. Perhaps parents would crash the system, requiring us to rethink why the system often favors schools over parent input. So as a collective mobilization tool, IEEs for everyone is an approach worth considering. But we need to be careful that as we crash the system, we also protect the people for whom we are advocating. The human cost is high any time we assert our rights within a system, as I’ll discuss in my next post.

Shoring up rhetorical fault lines: language matters

Earlier this year I blogged about about the fault lines between people who prefer person-first language (example: person with autism) and people who prefer identity-first language (example: autistic person). I introduced this topic as the first part of what I then hoped would be a two-part series: the first about uses of language in special education advocacy circles, and the second about a kerfuffle that went down in my other intellectual sphere, musicology. Both situations were ultimately about language and power. (If you want to read my original blog, you can find it here.) I never did get around to writing about the musicology situation, and likely won’t return to it. By the time I got my thoughts organized enough, the immediacy of the moment was gone; anything I might have had to say would have seemed needlessly reactionary. I’ll come back to it if / when my words mean more than my action. In the meantime: action is key.

But today, I want to take a moment to recognize that advocacy matters. On Friday, the organization (COPAA: Council Of Parent Attorneys and Advocates) that runs the advocacy course that I took released a public statement about use of language. When my course began last fall, we were directly instructed to use only person first language. There was no room for dissent, no room for discussion about what #ActuallyDisabled people might prefer. This public statement from COPAA is an acknowledgment that over the years, language changes, and we need to keep up. Person first language was seen in the past as a way to advance social justice; it was used by well-meaning people who wanted to honor shared humanity. But in the past several decades, a number of disability rights organizations and persistent activists have argued for identity first language, and COPAA now recognizes that person first language can’t be the default. If you’re curious, the statement also includes resources that argue for both sides of the argument. It also includes a section about what language to never use (such as the “r” word). But here’s the key point: “Presenters and writers need to know what language and terms the community they are speaking/writing about feels is appropriate and respectful.” With this statement, COPAA recommends that its member attorneys and advocates practice flexible language use; honor individual preferences; and check their own privilege when advocating on behalf of others.

I have no idea how long folks within COPAA have been talking about these particular language issues. But I do know this: a few of us pushed back HARD this year, and this resolution came out about a month after a group of us sent a lengthy message to the board about the pedagogy in our course, including a strongly-worded section about the use of language. Perhaps we were a strand of a much longer conversation. Perhaps we were the tipping point. In any case, I call this a win!

 

Advocacy vs. “Helicopter parenting”: what’s the difference?

I’m thinking about helicopter parenting today. You know: the much-maligned, over-protective parent who does everything for their child instead of empowering their child to do…whatever it is that needs to be done. And I’m thinking about what helicopter parenting looks like when one is parenting a disabled child, and whether or not there is such a thing as helicopter parenting when one is parenting a disabled child. I’ve been advocating for my son in a number of spaces for most of his life, and I always and continue to second-guess myself: am I overstepping? Will the people on the other end of my advocacy think it’s all too much, assume I’m a helicopter parent, and dismiss me out of hand? And how–in a society with such deep tension between over-parenting (whatever that means) and neglect–do I ensure that my intended audience understands that my advocacy really is about my kid and not about me? My own anxiety over this shows me how engrained ableism is: I KNOW I need to advocate for my child, and yet I constantly question my own intentions.

Helicopter parents have gotten a bad rap lately. There’s been a lot of press about the damage helicopter parenting is doing to young adults and, by extension, the society in which they now supposedly can’t function. Here’s one from a few years ago, published on CNN, which shows how Helicopter parenting can “ruin kids’  job prospects.” According to this article in the LA Times, helicopter parenting is “ruining America’s children.” Also, if we are to believe this article in Parenting, there are many varieties of helicopter parenting and adults are going to extremes to smooth the rough edges from the experiences of their mini-mes. And all the advice out there comes down to STOP IT AND LET YOU KID LIVE THEIR OWN LIFE. That seems like simple and sound advice, and no doubt, some folks need this advice. (There are few naysayers for this now common advice. One notable exception came from Brink Linsdey, published in The Atlantic under the title “The Real Problem with Helicopter Parents: There aren’t Enough of Them.” Lindsey points out the huge class problems with this myth: among highly-educated and financially stable families, parents have leisure time to pay more and closer attention to their children than in previous generations. Among families with parents who work long hours for poor pay, attention is a luxury. A-freaking-men.)

This essay, “What’s Wrong with Helicopter Parenting?” by Dr. Gail Saltz, published in Child Mind, emphasizes the importance of facing and overcoming obstacles during childhood. The argument is simple: if a child faces obstacles and overcomes them, they will gain the confidence necessary to tackle obstacles down the road. She bases her essay on a study done at the University of Buffalo: “Researchers looked at people who had been through difficult things, and they found that, on the one hand, going through very traumatic experiences does not bode well for one’s long-term resilience, but, on the other, going through almost no difficult experiences also does not bode well for one’s resilience.” Note this phrase in particular: “going through very traumatic experiences does not bode well for one’s long-term resilience.” I’ll come back to that.

Here’s another, published in Psychology Today, which takes on Helicopter parents who go so far as to interfere in their kids’ graduate school application process. This article is particularly interested in the money angle: parents are paying the bills for graduate school and want the best deal for their money. (Parent paying for graduate school? That’s another issue, deeply wrapped in privilege, that we’ll have to save for another time.) Psychologist Michael Ungar was consulted for this article, and he’s pessimistic about what this sort of helicopter parenting means: “The point of parenting should be to grow a child who is capable of taking on adult tasks. I can fully understand coaching a child on how to fill in applications and how to deal with admissions officers. But doing that for the child is misguided and short-sighted. This is not a strategy for long-term well-being. It is always better to empower children to make good choices for themselves rather than having them remain dependent on parents to sort out problems for them.” In the end, this author argues, the students develop poor coping skills and their stress and anxiety increase because parents have overprotected them.

When I directed a graduate program at a public university, I was quite surprised when parents contacted me on behalf of their children. This happened at many stages of the application process: initial vetting of schools, during the application process, and even the interview on campus. In some cases, the parents insisted on accompanying the child adult applicant into my office and would not let the child speak. I concluded that those applicants were not good fits for my programs, and in most cases I was right. But what I don’t know is how many of those parents had to advocate for their children at some point. How many of those applicants had learning disabilities? I don’t know. Were any of those applicants neurodivergent? I don’t know. Did any of them deal with crippling anxiety on a daily basis? I don’t know.

So what about helicopter parenting of disabled children? Here’s another essay, specifically about helicopter parenting and autism. (Which makes me wonder: is this about autistic kids at all, or just about parents and some separate entity named Autism? Person-first language can be so confusing!) Even this article advocates letting kids explore life through a hard-knocks approach, cautioning parents not to overprotect their children. The essay centers on a particular boarding school, and teenagers there who, the article implies, really ought to be able to do certain things for themselves by now. “‘We will have students who can’t do anything on their own although they have IQs in the 120s,’ said Dr. Hays of Franklin Academy, a day and boarding school for students with autism spectrum disorder and nonverbal learning disability in East Haddam, Connecticut. The teens have a ‘learned helplessness,’ he said. Their parents may have battled to get services for them and to ensure they could succeed despite their challenges. After all that, it may be hard for those parents to back off and watch their kids possibly fail at something.”

For those playing at home, let me highlight just some of the ableism rampant in this one little chunk of supposedly encouraging prose. Neurodivergence means that skills–both learned and innate, intellectual as well as motor skills–are variable. They may not transfer from environment to environment. They may not be available every day. They may not be dependable from hour to hour. Shaming students with high IQs for not being able to “do anything on their own” reduces the complexity of a child’s life to what they can’t do. I don’t know anything about this school, so I’ll stop there. And I do take the point that after spending years advocating for a child to be able to participate in school, church, and other community programs, after needing to facilitate every damn experience so your child is neither excluded nor mistreated, it is hard to let go. But this isn’t about being afraid to see your kid “possibly fail.”

In the end, the attack on helicopter parents and the spreading wisdom that we need to do less for our kids lacks the nuance that Disability Justice requires. There’s really no room in this shaming for parents of kids who truly need the support. Remember that quotation from the University of Buffalo study? “…going through very traumatic experiences does not bode well for one’s long-term resilience.” We who advocate for our disabled kids do so because they have already been traumatized, and without intervention, unless we actively interfere with the behaviors of people who do not accommodate and accept our children, the traumatic cycle will continue. We who advocate for our disabled kids do so because the world is not made for them. We carve new spaces for our children where none exists. We protect them not because we want to shield them from experiences, but because the experiences they have already endured are unjust, unkind, and often inhumane. Until this world begins to accommodate and welcome disabled children (and adults!), we have no choice but to hover closely and attack when necessary.

 

“I guess I’m done for the day because I’m stupid” or: How not to coach swimming

Nearly a year ago to the day I blogged about my frustration with my son’s swim coach. To wit: I had written in advance to request simple accommodations and to give the coaching team advance information about my son’s preferences. The coach took no notice of the requests, assigned him a very strict assistant coach, and he was kicked out of the pool on the first day. It was a struggle to get him back to the pool the next day, but I’ll give the coach credit: after I sent her a very irritated follow-up message, she re-assigned him. It took a week, but we finally landed with a Wonderful Assistant Coach who worked with him for the rest of the season. He “graduated” from the first level of swim team and over the winter looked forward to moving up to the next level in the swim team.

We had our back-to-season parent meeting over a month ago. I spoke with the head coach in charge of my son’s new level at the meeting. Told him straight-up: my son is autistic; he needs accommodations. What’s the best way to communicate with you about this?” He told me to email him. Swim season started 2 weeks ago, and a few days before the season started I sent the requested email. In case this might be helpful for other parents who are seeking accommodations for their kids outside of school, I’ll share the email with redacted names here. I also want to share this because it’s important for the world to know that “accommodations” are not difficult. I’m not asking for the moon.

“Dear Coach [Name Redacted],

I’m writing to give you some advance information about one of your new polliwogs. [My son] is autistic. Certain things are easy for him; others are not, and some of those “not” issues could very well come up in practice, especially in the first couple of weeks. I’m copying Coach [Other Name Redacted] so she can share anything she might remember about working with [my son]. [Wonderful Assistant Coach] was his assistant coach and was an excellent fit; she, too, will be a good source of information. I hope you can share this information with whatever assistant coaches will work with him. It’s been our experience that he struggles to adapt to new activities but does well / better once he’s used to the environment. So the first week is crucial, which is why I am giving you this information up front.

My son is very intelligent and has a wacky sense of humor. He’s funny and silly, and can come across as disrespectful, especially to people who don’t do silly / funny / sarcastic as much. But he lives for word play. When / if he pushes back about anything, the best way to diffuse him is with humor.

He’s completely uninterested in competing, so this team is all about the love of swimming for him. He shuts down in the face of everything competitive. That may change, but that’s where we are now. We do plan to come to meets this summer so he can gradually become accustomed to what that’s all about.

He sometimes needs repeated directions; verbal directions are hard to process–especially when he’s getting so much additional sensory information–and as a result he can appear like he’s not trying or is deliberately trying to go against instructions. In truth, it can take time for him to process some things. But once he has them in his body, he remembers.

He is very uncomfortable when people touch him, except for close family members. Even I have to ask before hugging, etc. We realize that coaches will occasionally need to guide his body. We found last year that this works best by first asking him before touching / guiding, and if he’s uncomfortable, demonstrating instead until he’s
comfortable.

Transitions are difficult. I’m glad you’ve placed him in the final practice session of the day for because it’s often difficult for him to get out of the pool at the end of his time slot. Perhaps we can continue to use this time strategy as the season progresses?

When he is stressed / anxious, his reaction is opposition. There may very well be times when he simply needs to be done early, and that’s fine from my perspective. We’re encouraging him to advocate for his needs so he can learn to soothe himself before blowing up. If he asks for a break, he really does need a break. He’ll rejoin when he can.

I’m always conflicted about sending these messages in advance because they paint my kid as a problem child. But I’m a special education advocate as well as a Mom, and we’re very pro-neurodiversity in our family. We prefer to ask for the necessary accommodations up front. My son is, in fact, very open about being autistic and is proud of who he is. He’s the kind of kid who can grow up to be a world changer;
he’s got just that kind of brain, creativity, and hyper focus when he needs it. He’s hilarious and well-read and sees metaphors everywhere. But taking direction and dealing with people are both still difficult for him. I’m hopeful swim team this year can be a continued place for growth and fun, and more good days than difficult days. I’m happy to be a resource as the season progresses.”

I had no response to this email, but his first 2 weeks of practice were great, primarily because he was again assigned to the same Wonderful Assistant Coach. But today was a transition day: he moved up again, which meant new pool, new time of day, longer practice time (from 30 to 45 minutes), and…new coaches. Guess what happened? The new assistant coach he was assigned to kicked him out of the lesson time just before the end because “he wasn’t listening.” I had a little chat with this coach at the end. It turns out that she’s a novice coach (this was her second day!) and she knew nothing about him. Nada. She had not been prepped. She had no idea she needed to ask before touching him. She had no idea he is autistic. That email I sent in advance was once again worth nothing. And so, unfortunately, I had cause to send yet another email to the coaching team.

“Dear Coach [Name Redacted],

My son had a great first 2 weeks with [Wonderful Assistant Coach]. Today was his first day at the new pool with new coaches and a longer time slot. I expected a few bumps, especially since he was going to be with a new coach, but I hoped, since I took great care to delineate what he needs in terms of accommodations, that he would at least have a positive first session today. Once again, however, he was kicked out of the pool before the end of the lesson time because the coach did not know how to deal with him. (This happened to him the first day of swim team last year, too, despite my requests for accommodations in advance.) As he got out of the pool he said to me “apparently I’m done for the day because I’m stupid.” He is now convinced that he cannot succeed. Please understand that my son has been kicked out of the first day of EVERYTHING–after school programs, sports teams, summer camps, etc.,–because “he doesn’t listen.” Yet no one seems to heed my advance information or observe the very simple suggestions I send. This takes a pretty heavy psychological toll on my son. I was hoping for different outcomes this year. I would hate for him to give up on the team and on swimming because of lack of accommodations. His disability is not visible but is real.
I had a chance to talk briefly with the coach afterwards, and she was surprised to hear that he is autistic. She asked if there was anything she could do to work with him and while I’m glad she’s open to working with him, I’m frustrated that she wasn’t given this information in advance. (I asked her to contact you.) She also told me it was her second day, and I’m a bit perplexed that a swimmer with special needs would be paired with a novice coach. I don’t know how the coaching is organized, but is it possible to purposefully place children with special needs with more experienced coaches, or at least give them the necessary information about particular children in advance? [This swim team] is such an awesome organization, but if we want it to be an inclusive organization, then accommodations really need to be honored. 
I realize that not everyone knows about how to work with autistic kids. But what we ask for is not extreme, and my husband and I are happy to offer further support and coaching for the coaches. I know you have other autistic kids on the team; the accommodations we request for [my son] will help more than just him. I hope to hear from you before tomorrow’s practice about whether or not the coaches will be able to work with him in the new environment.”
I’m still trying to figure out what to do next, particularly if the Coach doesn’t respond. And I’ll have to see how my son feels in the coming days about actually going to practice. Also, I’m really, really angry. But they’ve picked the wrong family to ignore. At the very least, the organization’s Board should expect to hear from me soon about developing an inclusion policy and training the coaches to work with disabled kids. Accommodations for some leads to a better organization for everyone.
#DisabilityJustice
**Update, next day: The head coach did respond to my email and apologized for the rough first day. It turns out that the assistant coach is not a novice at all; she’s been coaching for 3 years for this team. She referred to yesterday as her “second day” because she just came back from college and has only been back with the team for 2 days. so there’s that at least. The head coach has passed my accommodations request on to the middle management of the coaching team that works with this group, so everyone should be in the loop now. Apparently the coaching team was running late yesterday, so there wasn’t time to share information about the swimmers. So here’s a PSA for everyone who teachers / coaches / supervises kids: info about the kids who need accommodations needs to be your priority. Don’t leave it until the last minute. A kid’s self-esteem might be at stake.
I am, of course, skeptical. There will still be bumps. And I’m still convinced that this shouldn’t have happened at all, and certainly not 2 years in a row. That whole “it’s easier to ask forgiveness than for permission” DOES NOT WORK when we’re dealing with accommodations. Take note of this, world.