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.

 

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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.

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Autism and Higher Education: Accommodations and Communities of Care

On Oct. 19, 2016, I attended a webinar entitled “Students on the Autism Spectrum: Legal and Practical Considerations for Education Administrators.” The presenters were Scott Schneider (Chair of the Higher Education Practice Group at Fisher Phillips, a law firm with offices throughout the U.S.) and Josh B. Zugish, Senior Associate Legal Counsel with the Colorado State University System. Both presenters are attorneys, specializing in laws that affect higher education. So their perspective is largely about legal compliance, the steps necessary for universities to remain in compliance with federal law. The laws in question for this webinar were the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act, the two primary laws that provide protection for disabled people in a variety of settings.* I expected  them to offer ways to get by with minimum compliance. This was, after all, aimed at university administrators, and administrator folks are always looking for ways to shore up budgets. Instead, however, they offered a much broader framework for a community of care, a way to interpret the absolute minimum–known in legal jargon as “reasonable accommodations”–rather generously, and offered examples of several university campuses that are putting these care communities into action.

I attended this webinar because it lies at a nexus of my experiences: I taught at a public university for 10 years, and spent 3 of those as a part-time administrator. And now I’m finishing my training as a Special Education Advocate, learning the laws that govern K-12 Special Education and disability rights. Also, I’ve got 2 **Autistic kids who likely have college in their future, and just getting them there will require fights for accommodations. It behooves me to know what their rights are. So, here I offer a summary of the webinar, and some additional thoughts about the needs of Autistic students in Higher Education. There’s lots to praise here, and lots to critique, and even more to discuss in later blogs.

First, a summary of the webinar:

Zugish began with an acknowledgment that Autism diagnosis rates are on the rise. (Accepting this data uncritically is already a problem, but I won’t belabor the point here. If you want to read more context about the numbers, read this, and this, and this, and even this.) He used the latest CDC statistics to make the point that if we have such an explosion is diagnosis rates in kids, we can expect that a much higher number of Autistic kids will eventually make their way to higher education, and higher ed is not yet prepared to offer the “reasonable accommodations” that Autistic students in particular might need. In order to break down what “reasonable accommodations” might mean, Zugish (who, it is important to note, made clear that he’s not an Autism expert) drew from the diagnostic criteria of the DSM-V (The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, which is essentially the bible of diagnostic psychiatry). Criteria for diagnosis under the DSM emphasizes deficits; for an Autism Spectrum Disorder Diagnosis, a diagnostician is looking for a certain combination of deficits in communication, social-emotional reciprocity, and developing and maintaining relationships. This is not an exact science (which is a mild way of saying that modern psychiatry is deeply flawed and the development of the most recent DSM volumes has done more harm than good, but I digress). Even knowing about the “deficits” that can add up to an ASD diagnosis doesn’t help educators know what to expect. As Zugish noted, support needs will differ from person to person. And because this is not a visible disability, it will not always be immediately obvious to educators that a student needs accommodations.

So, pulling from the DSM’s explanations of Autism, Zugish broke down individual areas where Autistic students might need support and then suggested methods of support. Under communication needs, for example, he noted that according to DSM criteria, ALL Autistic students “have challenges with receptive or expressive language.” (I’ll let my Autistic friends address the “all” bit.) Here’s a list of his suggestions for accommodations, and remember, he’s coming from the legal standpoint of the minimal responsibility a university has to be in compliance with disability law; these are “reasonable accommodations,” not a pie-in-the-sky wish list:

  • “providing the instructor’s lecture notes or a note taker to focus on important information
  • providing study guide for tests
  • allowing a longer verbal response time
  • allowing important exchanges of information to be in written form
  • encourage instructors to be clear, concise, concrete and logical when communicating (don’t assume what students truly understand.”

He also discussed the social challenges Autistic students may be dealing with and suggests, among other things within classroom environments: allowing breaks as needed, allowing “social buffers” (such as letting the student have a laptop open as a buffer between her body and the class); respecting the student’s chosen level of eye contact; being purposeful about how groups are constructed if group work is required, aiming for maximum level of comfort for the Autistic student; and making sure that all classroom rules regarding discussion, classroom interaction, and logistics are written (and not left to what is expected to be implicit understanding). In short, he advocates following the lead of Autistic students regarding their needs in terms of social interaction, and not shaming them for non-normative behavior. This is good.

Zugish also discussed how to help Autistic students deal with sensory overwhelm in classroom environments. He argues in favor of allowing students to wear hats, sunglasses, and tinted lenses in class; these simple items can make a world of difference for students who need sensory aids. He also suggests providing alternative assignments and testing instruments upon student request, and helping students secure preferred seating in class. Again, his suggestions are mostly in line with letting Autistic students find what’s right for them.

He also addressed how Autistic students cope with anxiety, and how instructors can help. He pointed out that in stressful situations, Autistic bodies move in non-normative ways. Autistic students may rock in their chairs, or flap their hands, or may need to pace. One of his solutions is to discreetly ask the student if a break is necessary. (Here I found him walking a fine line between accommodations and ableism. It’s worth pointing out that Autistic bodies express lots of emotions, not just stress. Happy flapping is a thing. Happy rocking is a thing. Movement doesn’t necessarily indicate distress. This is one of many points that would have benefitted from the input of #ActuallyAutistic people.)  He did, however, also point out that instructors have the opportunity here to model how to react to the rest of the class: don’t call out the Autistic student; don’t discourage or interrupt the stimming student. And have a pre-arranged signal so that if the student needs to leave quickly, he can.

Zugish also suggested a variety of accommodations for motor skill challenges, such as providing a note taker in class, allowing work to be done on a computer (rather than depending on handwriting), and providing extra time for assignments and tests. These are good. But then he offered a learning profile for Autistic students: Autistic students, he said, tend to have excellent memories (both rote and long-term) and often excel in unconventional ways. Now, I know there are plenty of Autistic people with astounding memory skills, but we need to get past the idea that all autistics are savants and the corollary that all Autistics who get to college level work are geniuses. Skill sets vary widely. And educators need to understand that skill sets can vary by the day, and even by the hour.  If you reading this to learn how to better reach / accommodate Autistic students, please don’t assume savant skills. Take the time to get to know the student, rather than relying on a profile. And be ready to accommodate your Autistic students in whatever way they need accommodation that day, rather than assuming that what they could do today, they can do tomorrow.

Readers may be interested to know that after I attended this class, I posted a query on Facebook, asking actually Autistic people to weigh in on what accommodations have been / would have been most helpful in college / university. Here’s what they said:

  • extra time on tests
  • note takers
  • permission from instructors to record lectures for later review
  • attendance accommodations
  • permission to always use a laptop to take notes
  • reduction of distractions during testing
  • having class materials available in both written and auditory form
  • flexible, alternative assignments
  • breaks as needed

There’s clearly an intersection between what Autistic people need and the “reasonable accommodations” Zugish is suggesting. But as I listened to this webinar, I couldn’t help thinking about my own experience as a professor. I am hard pressed to come up with colleagues who are prepared to offer these accommodations. Implementing these accommodations in college programs requires a major shift in higher education. Ph.D. programs do not teach future professors about accommodations, and professors are usually coached by their universities and colleges to only offer the accommodations required of them by the campus student disability support office.

Furthermore, what Zugish was really describing was more than classroom accommodations. In his opinion, universities have a duty to think about the whole person, recognizing that Autistic students may need support in many areas of life, not just in the classroom. He’s proposing a community of care, a university-wide social support net.

Communities of care?

Zugish based his presentation on work already happening at three particular universities: Rutgers, Colorado State University, and University of Arkansas. These universities are thinking globally, and have involved not just faculty, but also counseling staff, housing staff, campus law enforcement, campus social life groups, etc.; the idea is to get the entire campus thinking about how best to support students. Rutgers offers peer mentors, life skills workshops, extra academic and personal advising, employment planning, and a streamlined process for academic services and psychotherapy services. At the University of Arkansas, students receive an additional 15-20 hours per week of staff contact time with academic coaches, mentors, and even the program director. As you can imagine, this requires staff. And increases in staff requires funds. So where is this money coming from?

The money is coming from the Autistic students. All of these programs add the fees to the Autistic student’s bill; Zugish reports that these fees average $3,000-$6,000 per semester (!!!). The universities argue that these extra fees are taken into consideration when financial aid is determined. I haven’t seen numbers from any of these programs to be able to address what actually happens. But here’s what I took away: universities will be glad to accommodate you as required by law, but you will pay for it. Does anyone else see a legal contradiction here? If we can argue that these accommodations are “Reasonable accommodations,” then universities should be required to provide them under the ADA and the 504 Act. “Required to provide” does not mean “pass the fees to the disabled population.” So while I’m heartened by the efforts these universities are taking, and I’m eager to get post-secondary instructors thinking about accommodations, I’m also stuck by the paradox here: if you are disabled and you need support, you will have to pay for it yourself, even though it’s required by law. This is not equity.

 

Do you work in one of the programs profiled in Zugish’s presentation? Are you a student in one of these programs? If so, I’d like to hear from you about how the program works.

 

 

 

*I am not an attorney. Nothing I say on this page should be construed either as an expert opinion or as legal advice. 

**The presentation used person first language. I use identity first language. On purpose. If you want to argue about it, go read this first.

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.

Card “tricks” and self-regulation

I recently came across a website with a bunch of card games that are all about math, and yesterday, I pulled one of those games out to “play math” with my son. I thought it would be fun to teach him a math trick, so we tried this one. (Don’t tell my husband about this, because we want to “trick” him later!) I had him pull a card, guided him through the first several steps, and then correctly guess his card, the Queen of clubs. He was entranced and wanted to try to trick me. So we reversed our roles, I put the instructions in front of him, and then…

  1. Hilarity ensued because I kept messing up the simple operations. Not on purpose. He kept having to correct my math. LOL.
  2. He promptly constructed a formula to describe how the math operations worked. He’s a global thinker like that.
  3. He scolded me for not reading the final step to him when he had been the “trickee” and I had been the “tricker,” and had trouble following the directions for the last step of “tricking” me because I hadn’t initially modeled how that step works. Naturally, since I wanted to “trick” him, I had done the last step in my head. Why I might want to withhold this information didn’t make sense to him. But now it was his turn, and as is often true for him, doing a thing once establishes the pattern for how it should always be done, and adding steps is hard.

We tried a couple more times and switched roles back and forth. He was delighted when I “guessed” his card but he couldn’t quite get the hang of “tricking” me and got so frustrated that he headed upstairs for a break. But as he left the room, he said: “it’s interesting that you struggle with the math steps along the way, and I struggle with the solution at the end.” Isn’t this great? He was able to quickly process what had happened and summarize it very succinctly. He noticed that he’s not the only person in the room who is in need of skill building, which is a natural segue into honoring each other’s strengths and helping to complement the strengths of those around us and build an interwoven community of respect. And then he spent some time by himself with his legos, with no pressure to re-engage until he was ready. (And I got time to read. YAY!)

While he was upstairs, I was struck with the realization that if he had been at school, it would have been extremely difficult for him to recover after getting to this point of overwhelm. He needs only time, space, and favorite things–not hard to provide–but the pace and overwhelming sensory input of a school environment meant that he constantly had to try to self-regulate in a very challenging environment (and when he couldn’t, he felt broken). I gain new insights into why homeschooling is such a good choice for him right now with each passing day. After he felt better, he begged to work on Spanish (!), spent some time thinking about physics with one of his favorite game apps, and gave me a run for my money in a Scrabble game. He gravitated to and used the tools he needed for self-regulation, a complicated process for any 9-year-old, but one that is easier when the kiddo has space to be himself.

We’ll keep trying the “trick” when he’s up for it, mostly because it’s a cool way to play with math (and I sure need the practice). And the added “treat” (too obvious for a Halloween blog post?) is that we get to practice expectations in social interactions in what I hope is a non-trhreatening way, and we both get as much time as we need afterwards to process what we just learned.

“At school, I feel broken”: Reason #42 why, as of Monday, I will homeschool my son

A few months ago, I wrote about my son’s new school placement, a Special Education program for children with more “behavioral support” needs than a zoned school can supply. (Translation: “your kid is a handful and we’ve exhausted our resources.”) I expressed my hope in that blog that my son would find his tribe, peers with whom he could share the challenges of being a twice-exceptional kiddo in a public school. After 8 weeks in this program, I can safely report that he has not found peers, and he is more stymied than ever by expectations that he behave in a certain way. There are other kids who share his “behavioral” challenges, but there are, as far as I can tell, no other gifted kids in his class, and he has not yet been allowed to return to the gifted classroom.

As is true of lots of kids / people, my son’s brain clicks in before his body follows directions, but he also has the benefit of a surprising vocabulary and impressive cognitive skills. If a teacher directs him to do something, he’s just as more than likely to ask by what authority the teacher dares to ask such a thing as he is to comply. On his first day of school, he responded to continued requests that he raise his hand before speaking and asking questions with “you’re getting in the way of my Freedom of Speech!” This sort of self-advocacy is going to serve him well when he’s an adult, but it’s not well-received now, especially in a system that values / teaches / demands compliance. So here’s the wall he’s up against: learn to mimic behavior you think is more appropriate to sheeple, or fight an oppressive regime; do what the adults tell you to do, or negate your self. (I can hear you thinking “no 9-year-old thinks like that!” Mine does, if in different words. He’s awesome.)

And what about the argument that in order to learn to get along with other people in groups he needs to learn to get along with other kids at school, to “control himself” in this classroom so he can do the same in other environments? To that I say: there’s “getting along” with people and there’s compliance. What is required at school is compliance, following adult directives with no questions, moving with the masses in a predictable rhythm, never causing a stir. Maybe that’s a bit extreme, but the program he’s in right now is all about learning compliance, and I don’t want my kid to learn compliance. I want him to learn to fight for himself and others (although maybe with more tact, strategy, and well-developed talking points). I really love Amy Golden Harrington‘s take on this, especially as it relates to the asynchronous development of 2e kids: “Social conditioning and school indoctrination get into children so early and are reinforced by the adults around them without examination as to its efficacy. Mainstream parenting and schooling work in concert to suppress individuality and promote conformity. So many children are unaware of what life could be like when they are respected for who they truly are not how well they conform, behave and fit into the box.” (See her essay “I Forgot to Socialize My Kids.”)

Compliance is especially fraught with peril in Special Education. What is “expected” (such as behavioral objectives) is ableist for many reasons. The most problematic, ableist issue we’re dealing with right now is this: kids who can’t “behave” should be taught to “behave” before they can be allowed to do brain work. Kids who can’t “behave” and disrupt the learning of other kids need to be removed and segregated from the kids who can “behave” so the kids who can “behave” can learn without interruptions. And we’ve been told (and bought into for a while) that “his behavior is getting in the way of his learning.” Note the logical fallacy at the core of this angle: one can’t learn unless one “behaves” in expected / accepted ways. So how do I reconcile that with him teaching himself *everything* about the presidents at age 5 whilst bouncing off everything solid enough for a good bounce? I call foul. He learns when expectations match his skill set. He doesn’t check the bevavior-meter before deciding what to memorize or investigate next.

So this has been my son’s path: gradual addition of restrictions ultimately ending in a segregated classroom of just a handful of kids who go about their days constantly getting in trouble because expected behavior is not available to them. And they learn new tricks from each other and have conversations about how they ended up in this place. When my son shares these conversations with me, they sound suspiciously close to “what are you in for?” These kids go to school each day to practice behavior. In other words, they go to school all day to practice the thing they struggle with most. And while ableist society might argue that this is a good thing, an environment set up to help kids learn control, we need to recognize that this is a deficit-based education for kids like my son (and probably many others), kids who could do more with their brains if not constantly under fire for behavior. We should all have the right to a strengths-based education, don’t you think?

So tomorrow we will withdraw him from public school. This has been a complicated decision, made difficult because we–his parents–recognize that his current placement is not an oppressive regime in and of itself. The teachers are very, exceedingly patient. Kids get sensory breaks, and lots of them. Kids who need to stim get to stim and are not shamed for it. As I wrote on Facebook a few weeks ago, I went to visit my son in class one day and found a spinning boy just inside the door. He got up several times while I was there to spin some more, and sat down to do his work when he was done. And on another occasion, another visit, I overheard a teacher talking to this same boy about how much she liked to spin when she was young because it felt good. There was no shaming of this child. There’s yoga during the day, and meditation. Kids learn calming techniques (that is, calming techniques in addition to the stims they’ve already developed for themselves). There are games. There’s no ABA. And the teachers encourage self-advocacy; my son has not been denied the opportunity to speak his mind when he has had the presence of mind to ask for the floor in an appropriate way (meaning not yelling out in the middle of class, not interrupting, etc.) These are GOOD THINGS.

But my son feels broken at school, and that is enough for me to seek a different path. I will be the first to admit that my son has things to learn about getting along with people. Don’t we all? But these lessons don’t have to be coupled with behavioral compliance. This timing is especially ironic; tomorrow I begin intensive training as a Special Education Advocate, and I feel like there’s no place for my own son in our education system. But I’ll have to deal with that later. For now we are going to try a freedom-to-brain approach, and we’ll see where it takes us.