“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.
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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.

What’s a Free and “Appropriate” Education for Gifted kids?

One of the key provisions of Special Education law (both IDEA and Section 504) is the idea of FAPE, the right of each child to a Free and Appropriate Education. “Free” has a clear meaning. “Appropriate,” on the other hand, is in the eye of the beholder. As I’m going through my Special Education Advocate training, I’m trying to square what I know about gifted kids with what’s possible under the law, and I’m getting more and more discouraged. Let me show you some of this conflicting information:

  • This essay, for example. The author, Jonathan Wai, is a researcher and writer for the Duke Talent Identification Program, colloquially known in gifted circles as Duke TIP. Wai wants us to recognize that intellectually gifted kids–like gifted athletes, gifted musicians, gifted artists–should be supported in reaching their full potential: “If we reframe how we think about equity as helping each student learn at the pace at which they are naturally functioning — a free, appropriate education for all, and not just for individuals with disabilities — then this conceptualization of equity, in fact, also promotes excellence.” Wai is right: we celebrate extreme athletic gifts (Olympics and other competitions, which, let’s face it, are over-populated with younger people), and we fetishize musical prodigies (America’s got Talent, etc.). As a general rule, however, zooming ahead in school is not an option. When my son was in a magnet school, where all the kids were working at least a grade ahead and he was still bored, the school district told us that double promotion (being in a magnet school + grade skipping) was not allowed. But this is an opinion piece about the values of acceleration. What about research?
  • I’m making my way through the landmark report “A Nation Deceived: How America Holds Back its Brightest Students” (2004), which you can download here. I’m not a fan of the occasional thread of American Exceptionalism in the report (“we have to recapture the lost greatness of America, etc!!”), but I completely agree with one of the essential tenets: “educational equity does not mean educational sameness.” It seems that as a country we’ve become more accustomed to the idea that kids with learning disabilities need a different approach to education in order to have equal access to learning. (This is good!) We’re ready with math and reading intervention programs and we have more and more dyslexia services, for example. But we’re not yet comfortable with “different approach” meaning “accelerated.” (Here’s the part where I confess that I skipped 1st grade, and while I did struggle a bit with the social demands of being with older kids, I also was still at the head of my class with very little effort until I finally hit rigorous classes in high school. For most of elementary school and middle school, I was still bored. But I wasn’t in a public school system until 10th grade, so that’s a different discussion altogether.)
  • There’s no federal budget money for gifted programs and no oversight when it comes to gifted education. None. And according to the Nation Association for Gifted Children, only 25 states provided funds to school districts for gifted education in the 2013-12014 school year. Provisions for gifted education come downs to states, and sometimes to districts. In Tennessee (and maybe in other states; I don’t know) “giftedness” is considered a disability. I made a lot of jokes about this at first, but now it makes sense to me. Qualifying “gifted” kids as “disabled” kids at least affords them access to special education provisions. My son’s first IEP (once he finally had it in place after a long battle!) included “gifted” as his third learning disability, and allowed for enrichment and curricular compaction. This means more burden placed on teachers, who must master differentiation in the classroom, and teachers dealing with gifted kids are not necessarily required to be trained in gifted education. Heck, even the school psychologists who test kids for giftedness aren’t necessarily well trained. (See, for example, this confession by a former school psychologist. Want more reports about gifted education? Here’s a collection.)
  • Even in school districts where there is solid provision for gifted education, there may be little recognition that gifted kids also might need special education services. These are the twice-exceptional kids like my son, whose numbers are very likely underreported and under-anticipated. See, for example, this report by Karen B. Rogers about a 5-year study of gifted / 2e kids funded by the government. The report is rich, and you should read the whole thing, but here are some important bits for me: (1) 2e kids are under identified because there’s no established best practice for where to find them; (2) whereas current research, this research found an average of 19% of gifted learners also have learning disabilitiesBy contrast, only an estimated 5% of school-age children have learning disabilities. (See “The State of Learning Disabilities,” 2014, put out by the National Center for Learning Disabilities.) I’ve recently started meeting with a handful of other parents who have 2e kids in our district. Before our second meeting, I sent invitations to the head teacher in the gifted area in 2 schools, asking them to share my contact information with parents of 2e kids. They knew no such parents. So in 2 schools, both with solid gifted programs, and together totaling about 1,700 kids, my son was the only 2e kid? I find that hard to believe. My guess is that there are 2e kids walking the halls who haven’t been identified. And our parent group has four members, four parents from a district of over 47,000 students. There are more 2e kids out there, I’m sure of it.

There’s so much more to read and think about. But here’s what I’ve learned this week in my Advocacy training: FAPE tends to be upheld in court cases as a threshold of opportunity, not as a bounty of best-practice options. The hot button conversation right now is about how to measure a child’s progress. Is only “some educational progress” ok as a marker of FAPE? Or should the child make “meaningful significant progress” as a marker of FAPE? Accepting “some educational progress” as a marker of FAPE upholds the idea of FAPE as a threshold of opportunity. So if your gifted kid is getting medium grades because xie isn’t sufficiently challenged, this may not be enough to challenge FAPE: your child’s grades–despite what you know about your child!–show “some educational progress.” (A 4th circuit court just handed down a decision about this, upholding a 1982 Supreme Court decision that FAPE is only a threshold of access. See O.S. by Michael S. and Amy S. v. Fairfax County Sch. Bd., 115 LRP 50343, Oct. 19, 2015.) All of these reports about the needs for gifted education and best-practice documents about how to do it well mean little if our judicial system upholds “appropriate” to mean “meh.” And there’s more: another landmark Supreme Court case (Schaffer v. Weast, 2005) placed the burden of proof on parents to show that their child’s placement was not “free and appropriate.” This is bad news for parents because parents don’t tend to have detailed knowledge about Special Education law. So there has been increased pressure for outside testing and expert witnesses. And wouldn’t you know it, another Supreme Court case the next year (Arlington v Murphy, 2006) held that schools were not responsible for paying for the costs of such experts, even if  / when parents won a case. So the upshot is this: districts won’t tell you your rights and you have to find out about them yourself; if you want to hire an expert to prove that your kid needs special education, you will likely have to bear the brunt of those costs; and if what your kids needs is gifted education, there are few provisions in place to provide this help.

So what’s a free and appropriate education for gifted kids? I don’t know. If you find it, please tell me.

*Note: I am not an attorney. I’m not even a fully-trained advocate. My blogs are not intended as legal advice. If you need help advocating for your child(ren), contact COPAA for an attorney or advocate near you.

A guest post from my son: Vouching for disabled kids

In his last few weeks of school, my son decided to write an open letter to his teachers. He kept it at school, squirreled away in the back of one of his notebooks, and worked on it whenever he had free time. He did get to talk to the teachers about some of his concerns, but the letter came home with him yesterday, his last day of public school. (We will begin homeschooling on Monday.) This is a pretty cool letter. He outlines his frustrations with the program in clear terms. Sometimes he doesn’t have all the information necessary to understand the bigger picture, but he consistently understands that disabled kids (and all kids!) need much more compassion, understanding, and patience.

He has given me permission (nay! his enthusiastic encouragement!) to share the letter here. (Note: I did not edit this aside from redacting names, but in some places, we’ve added additional information as necessary. He’s sitting with me as I type this.)

“We need to talk. First off, I’m writing this, and I hate writing, so I’m really giving my all. ACHIEVE [the school program] is horrible. It’s bad for disabled kids because of the following reasons:

  1. Most disabled kids need laughs. When you say “stop laughing,” you’re leaving it to them to make their own laughs later, getting them in trouble for doing what they need every day. [Comment from Mom: he clarified that this means he needs things to keep his brain busy, and other kids do, too.]
  2. Sometimes when you make me mad or upset, it makes me not hungry, and I need a good amount of food everyday to eat. You also don’t let people eat lunch until the end of the day. Taking away Recess I understand, but that’s just cruel! [Comment from Mom: no, no it’s not ok to take away recess, EVER. None of this is ok. As I’m typing this, he tells me he hasn’t had outdoor recess for 2 weeks, not because the weather has been bad, but because he has consistently lost recess “privilege.”]
  3. You make kids go into the hall for vouching for themselves or other kids. (I’m vouching for myself and other kids right now.) [Comment from Mom: he clarifies that this means advocating for yourself and others.] Yesterday I was asking Mrs. [name redacted] if she could turn the lights off (my eyes hurt) a couple of times and then she said “I’ve had enough!” and sent me out into the hall. My eyes were freaking hurting!
  4. I’m just gonna throw this out there: back when [student’s name redacted] incident happened, my mom reported it, and apparently Mr. [Principal] didn’t know! In your face, Mr. [bus monitor]! [Comment from Mom: here he’s referring to an incident that happened about 6 weeks ago, in which another student managed to escape out the back of a school bus and a chase ensued. Once the student was caught, he was in so much distress that he broke two windows in the school bus. The bus monitor and driver did not report this incident, but the principal resolved the situation once I reported it. This entire incident left a big impression on my son.]
  5. When they [names of fellow students] get physical, you get them in the utility room, and I get why they’re in trouble, but you do it by getting (drumroll) physical. [Comment from Mom: He has been working through this irony for weeks: the teachers have zero tolerance for physical outbursts from students, yet the teachers themselves use physical restraint to remove students from a room. We have not been able to talk to the teachers about what “restraint” actually means in this context, and the teachers, by my son’s admission, never restrained him.]
  6. Why do you assume how my mind works. it makes me feel broken. Have you heard the saying “When you assume, you make an ass out of you and me.” I don’t want to be an ass! I don’t think you want to be either.

My point is that there are quite a few bad points of ACHIEVE that you need to know about.”

This is the longest document my son has written voluntarily in…ever. He hates writing. But he was motivated. And again, as I’ve written before, the teachers in the program are not horrible people. But his days of being on the losing end of body and emotion policing are done. And we’ll have Recess EVERY DAY.

“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.

Starbucks in my community? Let’s show them why we #BoycottAutismSpeaks

On Labor Day I took my son to Starbucks for a little mother-son date. While we were there, we noticed this flyer advertising upcoming events supported by a program called Starbucks in the Community:

photo

Notice especially the Autism Speaks event in the middle, one of the ubiquitous walks A$ holds around the country. Given that I support the #BoycottAutismSpeaks movement, I inquired at the counter about who I could talk to about removing support from this A$ event. I was given a business card, and wrote the following letter the next day. (I’m sharing the letter in full both so I don’t have to resort to awkward “and then I said” reportage, and also in case anyone wants to borrow the wording or the rhetoric in future letters to Starbucks. I hereby give blanket permission for you to share and use this.)

***

“Dear Ms. [name redacted],

“Yesterday I took my 9-year-old to Starbucks for cake pops and a game of cards, one of his favorite things to do. (We usually go to the store in Round Rock on Palm Valley Blvd.) While we were there, I noticed a Starbucks in the Community flyer advertising several upcoming fundraising events. I’m so delighted to see an international franchise taking interest in local communities. But I want to draw your attention to one of the organizations your flyer supports, Autism Speaks, in the hope that the stores in your district will withdraw support from this organization.

“You may not know that the Autistic community has been actively boycotting Autism Speaks for quite some time now. Said differently: the very people Autism Speaks purports to help do NOT support the organization. A number of organizations in the disability community have banded together not only to boycott Autism Speaks, but also to get word out to the public about the damage Autism Speaks has done to Autistic people. Here, for example, is an eloquent open statement about the boycott:
http://www.boycottautismspeaks.com/why-boycott-1.html. Let me highlight a few points from this document:

-“Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership.”
-“Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public.”
-“Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families.”
-“Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society.”

“Regarding this last point, please see the attached image of the flyer I spotted in the store. Note the final sentence: “Walk Now for Autism is an inspirational & impactful opportunity to raise money & awareness to help change the future for all those who struggle with autism.” As it turns out, my son–who was with me and saw this flyer–is Autistic. He does not struggle with Autism. He is actually quite proud of being Autistic. He does, however, struggle with a larger society that paints him as less than normal, or needing to be “cured.” My step-daughter is also Autistic. My children do not need awareness campaigns, and they
do not need to be cured. They need legal rights, community and social services, and acceptance for who they are.

“There’s more to the boycott document, and I hope you have the opportunity to read it in full. And there are many more such blogs/ essays/ articles (see, for example: http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/, and http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/.) If you would like to read a more recent indictment of Autism Speaks, here’s an op-ed in the L.A. Times by Steve Silberman, whose new book NeuroTribes is the most complete history of Autism ever written: http://www.latimes.com/opinion/op-ed/la-oe-0824-silberman-autism-speaks-20150824-story.html. Again, let me highlight one moment in the op-ed:

“Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt. As people on the spectrum have struggled to overcome years of stigma and negative stereotyping, the group has framed their condition in terrifying and dehumanizing terms. Its 2009 video “I Am Autism,” which debuted at the United Nations, portrayed autism as a creepy stalker: “I know where you live, and guess what? I live there too. I hover around all of you…I work faster than pediatric AIDS, cancer and diabetes combined… I will plot to rob you of your children and your dreams.”

“This is what Autism Speaks does in communities. This is how Autism Speaks portrays children like mine. This is what Autism Speaks does with the money raised at walks such as the one advertised in Starbucks in my town.

“I hope you will reconsider your support of Autism Speaks. If you are dedicated to supporting Autistic people, I suggest that you consider supporting the Autism Self-Advocacy Network or The Autism Women’s Network instead. I’d be happy to talk more with you about how to support Autistic people in our Central Texas community.

“I’d like to continue taking my son to local Starbucks stores. We treasure these board game / card playing afternoons and he adores those lovely cake pops. But I cannot take him to places that support organizations that label his life a “struggle” and him as “lost” or “kidnapped.”

Mant thanks in advance for your consideration.

Felicia Miyakawa”

***

I wasn’t alone in my objections. Several other parents–even more than the people I reached out to!–wrote to object, and I’m happy to report that Starbucks responded. The acting district supervisor not only sent my email to her media staffer to vet my resources, but also contacted Seattle headquarters. My name has been given to to southern district supervisor in charge of community relations; I certainly plan to follow up.

I talked with the district supervisor this morning, and here’s what I learned: Starbucks has had a long association with Autism Speaks. It started with a couple of parents in partner organizations whose children are Autistic. The parents felt that A$ was making a positive difference in their lives, and worked with Starbucks to create a partnership. (The gist here is that Starbucks supports A$ walks elsewhere, too, not just here, so this is a much bigger battle!) So corporate headquarters now knows about the #BoycottAutismSpeaks movement, but also has a long relationship with people who are passionate about A$. Starbucks needs to know who to support.

And here’s where YOU come in: Starbucks continually reviews its relationships with community partners. The company is committed to supporting A$ walks through the end of the year, but that commitment is not permanent. If we can give them local community partners to support in lieu of A$, they will listen. I want to emphasize that the supervisor I talked to was quite eager to support the needs of people, not organizations. It makes perfect sense to her that if A$ is not supporting people, we need an alternative. But WE have to make the case, and WE have to give them an alternative community partner to support.

WHAT YOU CAN DO:

  1. If you are new to the #BoycotAutismSpeaks movement, please take some time to read the links above. Then ask yourself: do you really want A$ in your community?
  2. Forward this everywhere. Let everyone know that (1) Starbucks, as an international cooperation, supports A$, and/but (2) they are willing to listen and talk.
  3. Send your own letters. I promised not to give out email addresses here (*send me a private message, hint, hint*), but there’s a dedicated portal for suggestions about community involvement here: http://mystarbucksidea.force.com. the supervisor I talked to insisted that suggests posted here are constantly reviewed and discussed at corporate. You could also leave a comment here: http://store.starbucks.com/customer-service/cs-landing.html. Or, contact your local store, find out who the district supervisor is, and send an email to that person.
  4. Find / create alternative events for Starbucks to support (and please work with organizations run by or supported by #ActuallyAutistic people). It’s easier for Starbucks to work with partners who host specific events. (This is another reason why it is so easy for them to support A$.) #ActuallyAutistic people who run organizations: please help us all get the word out about your events so we can support your work.
  5. If you are reading this and you are already working on a similar campaign, please contact me! I want to work with you to amplify our efforts.
  6. People in Central Texas: please let me know what’s going on in your community that helps #ActuallyAutistic people.

Who’s with me?

#BoycottAutismSpeaks

#neurodiversity

#Autism

Twice-exceptional kiddos and the conundrum of Least Restrictive Environment

My son started 4th grade this week. This year he is at a new school, his third school since starting kindergarten. Between second grade and third grade we moved to another state, so naturally he attended a new school last year. We searched long and hard for a school rich in both Gifted and Special Education resources and deliberately moved to a neighborhood served by that school. But this year we had very little choice about where he would go to school. After working with him for a year, the administrators and teachers at his third grade school decided that his behavioral support needs exceeded what was available at that particular campus and that it was time for a different approach.

Let me put this into language parents of kids like mine will recognize. My son was in trouble for “disruptive behavior” nearly every day last year. (I’m qualifying “disruptive behavior” because I want to problematize it later.) Being pulled out of his general-education classes and going to his special-education teacher for “cool down time” was just as much a part of his schedule as Math and Social studies. He became very close with the Assistant Principal. Notes / emails / calls home were de rigueur. Behavioral charts tracking responsible, safe, and respectful behavior came home every day for most of the year. At some point during the year, the Assistant Principal decided that in-school suspension was no longer appropriate for my son, who actually preferred the contained, quiet space and unrestrained access to a single teacher. Behavioral specialists from the district were called in for observation and help. And by the end of the year, everyone at the school agreed that he needed a change in placement, at least as a temporary measure.

Over the course of last year, his schedule changed from a less restrictive environment to a more restrictive environment. He began the year in a regular third-grade class with an extraordinary teacher who excelled in differentiation. He also had pull-outs for Talented and Gifted (TAG) subjects, and scheduled sensory breaks with his Special Education coordinator. In some classroom spaces (even TAG), he was bored. In others, the sensory input was overwhelming. Boredom and overwhelm often lead him to behavior others find disruptive: verbal stimming, opposition and argument, and sometimes, loss of control of his body. We changed his schedule several times, reducing the number of transitions he had to go through each day. After spring break the principal suggested placement in 5th grade TAG math (a bit beyond his abilities) and 4th grade TAG language arts (still boring). This cut down on the transitions because they were back to back, but ultimately this wasn’t a good solution because it didn’t hit his brain needs just right. Then we put him on furlough from his TAG classes, trusting his amazing teacher to fill in the brain gaps through differentiation. She didn’t disappoint, and he felt less stressed with fewer places to go. But transitions continued to challenge him, and any change in routine (chair in a different place, substitute teacher, change in rule, change in schedule, etc.) made focusing on responsibility, safety, and respect nearly impossible.

(Notice, however, that these goals are all behavioral and have nothing to to with his academic performance; he managed to get fabulous grades even when he wasn’t really paying attention and was really stressed out. So this is not a kid who needs academic intervention. This is not a kid who needs help learning. This is a kid who struggles in a social and sensory environment that is not suited to his needs. His “behavioral problems” are very valid responses to feeling overwhelmed and overstimulated.)

The remaining possibility for an even more restrictive environment at that campus would have been primary placement in a special education classroom. But because my son is gifted, this is not a good placement for him. He’s very impatient with the other kids in the class who need more time to sort through information. His impulses to shout out answers are even stronger in this environment. So we were stuck with a conundrum I’m confident every parent of 2e kids has to confront: what is the ideal classroom setting for a child who is gifted and needs a quick pace in terms of absorbing new knowledge, but who is also disabled, and needs patience, frequent breaks, iron-clad routine, and allowance for the variances of each day’s (each hour’s!) sensory needs? The answer was not the magnet school he went to for K-2. That school almost met his academic needs, but had painfully few resources for special education. The Special Education teacher was only on campus one day a week, and there was no resource room to retreat to in times of high stress. And the answer was not the school he attended last year, which had adequate TAG and Special-Ed resources, but a busy schedule that was too much for him.

So now he’s in a program called Achieve at another elementary school in town, one of three such Elementary school programs in our school district. Achieve is for kids who are already in Special Education who need more behavioral support. (In case you are tempted to google this, know in advance that there’s little to no information on the internet about this program. Kids are placed in Achieve by referral, not usually by parent request. The teacher-to-student ratio is incredibly low–there are 2 teachers and 4 aides to 14 kids in my son’s program!–and I imagine the district struggles to maintain those ratios. So there’s no advertising for Achieve. Even so, I find the lack of on-line information curious.) There are two classrooms. The first, where he is currently placed, is self-contained. That is, the kids don’t rotate to other classes; they don’t attend “specials” (such as Music and Art); they eat lunch in the classroom together. With fewer transitions and fewer opportunities for sensory overload, the kids are theoretically supposed to be better able to learn coping mechanisms for overwhelming school scenarios. We’ve been promised that a request for a sensory break is never denied. Kids are guided in ability-level academic work. When a kiddo feels ready, xie graduates to the next classroom, and begins to re-integrate into the gen-ed population one class session at a time, always accompanied by an aide (and always with the option of going back to Achieve, with zero judgment). If it takes months for a kid to feel up to attending music class, for example, then it takes months. (This was a particularly challenging class for my son, who is sound-color synesthetic and may have perfect pitch. There was just too much sensory information in music class for him to handle most days!)

The theoretical goal for all children in this program is to eventually re-integrate back into the less-restricted environment of general education, bit by bit, slowly so that the child feels completely in control. There’s no particular goal date, no set schedule for any of the kids. For some kids this process takes weeks. For others, the safety of the Achieve program feels more comfortable and they stay longer. There are equivalent programs in middle school and high school in our district. As my son’s new teachers told us, some kids always need the support of these programs, and that’s just fine.

At issue here is the legal mandate of Least Restrictive Environment (LRE), which is a complicated but crucial part of IDEA, the Individuals with Disabilities Education Act. I’m not an attorney, so I won’t attempt to explain this part of IDEA in detail. (This page is a good resource. And this page includes the original memorandum about LRE with helpful links inserted after original paragraphs.) What it boils down to for my son is this: he has the right to a free education with “peers”–who are not disabled–to the greatest extent possible. And herein lies the challenge: 2e kiddos are a minority within a minority. No one really knows how many 2e kids are currently in schools. In a 2006 handbook entitled “The Twice-Exceptional Dilemma,” the National Education Association estimated that about 6% of children served by IDEA may also be gifted. A paper by Micaela Bracamonte published in the March, 2010, 2e Newsletter provides a more specific number: 70,000 2e kids in self-reporting school districts across the country. “This number,” she writes, “represents a percentage consistent with estimates that two to five percent of the gifted population have LDs and two to five percent of students with LDs are gifted.” Then there’s this recent article that claims that 14% of gifted kids also have a learning disability. Any way you look at the issue, it’s a relatively small number of kids.

My son has yet to have a classmate who is both gifted and disabled. He knows other 2e kids, but they haven’t been his classmates. So who are his “peers”? When he is with his gifted “peers” in a less-restricted environment, his disabled self seems out of place. When he is placed in a more-restricted special education classroom, his gifted self is not well served. And, of course, he is not two selves. He is one boy, one incredible boy who simply needs a safe place to learn. His true peers, those who are best equipped to understand him, are likely to also be both gifted and disabled.

The jury is still out about whether or not this new program will be a good fit for him. I’m sure I will have more to say in the coming weeks and months. Maybe we’ll need yet another solution, but maybe, just maybe, he’ll find his tribe there.