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.

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

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

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

Power Structures

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

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

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

(Dis)Serve and Protect

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

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

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

Crashing the system

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

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

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

Crashing the System in Special Education?

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

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

Intersections: Activism and Advocacy, part 1

“Until we are all free, we are none of us free.”–Emma Lazarus

Last weekend I read a short book by Daniel Hunter called Building a Movement to End the New Jim Crow: An Organizing Guide. This book, which has an accompanying website, is a follow-up to Michelle Alexander’s book The New Jim Crow: Mass Incarceration in the Age of Colorblindness, which is next on my reading list. All of these resources are specifically about the new Jim Crow era––the modern prison industrial system. I don’t want to downplay the significance of this subject: anyone who cares about our modern society and about basic Civil Rights should read these books and learn about why Civil Rights leaders and historians call prisons the New Jim Crow. (And if you haven’t yet, you should definitely watch Ava DuVernay’s new film The 13th.) But the nonviolent, civil-resistance organization ideas in Hunter’s book are applicable to movement organizations of all sorts, and the book left me thinking about the intersections of advocacy and activism. In particular I’m pondering how to apply his organization ideas to my own work in Disability Rights (a movement) while still advocating within the construct of Special Education (a system).

Over the course of (what I hope will be) three blog posts, I would like to summarize the big ideas of Hunter’s organizing guide for people who have not yet had a chance to read it. (Interested readers should, however, go and read the organizing guide. I cannot possibly over-emphasize how important it is to understand how the modern prison industrial complex violates human rights on a daily basis.) And then I want to think out loud about how these ideas overlap with something that may or may not seem overtly political: Special Education advocacy.

I want to be clear from the outset that I am not writing specifically about political parties. Civil Rights movements should cut across political parties; they should be nonpartisan. They often aren’t, of course, so we need to be clear about how we are defining “movement” in this context. Hunter defines movements as “forces of collective energy, channeling deep emotions like anger and love and mobilized by hopes and dreams for large-scale change.” The large-scale change about which he writes is modern-day segregation. But large-scale change is needed in a number of directions. In order to move towards that large-scale change, we need to know how to get there.

Hunter divides his guide into three chapters: (1) the roles people play in movements; (2) how to build strong groups; and (3) how to gather a group’s strengths into successful campaigns. Before I break down some of the major concepts of Hunter’s book, I want to foreground one of his resounding and recurring themes: movements aren’t about convincing through argument; actions move society. It’s extremely likely that people who are willing to read my blog in the first place are either predisposed to not be moved by any of my arguments, or already share the same worldview. I write not to change minds, but to provide support for those such as myself who want to take action. I write to push forward the long game, to encourage forward motion not just in the Disability Rights movement, but in all Civil Rights movements.

In chapter 1, Hunter quickly dispels four myths that seem to permeate movements. Let me briefly summarize both the myths and the realities as he presents them:

• Myth: “movements are lit like a match.” Reality, movements take an incredible amount of time to build. When we construct histories of movements, our narratives nearly always focus on the flashpoints and ignore the many years of buildup. For most of us, our participation in movements is likely to be part of the build up; very few of us will light the match.
• Myth: ”movements are built by heroic figurehead leaders.” Reality: movements are built by groups, organizations, and networks working together. Again, when we learn history, we are unlikely to learn about the groups, organizations, and networks, unless our history teachers are particularly conscious of the interplay of those groups. We are more likely to learn about the figureheads, the people who lit the match, such as Mohandas Gandhi, Martin Luther King, Jr., Harvey Milk, or Jim Sinclair (one of the first Autistic activists to openly counter the argument that Autism is something that needs to be cured). Yes, these figurehead leaders did important work. But they all relied on a tide of like-minded friends and allies. They did not do the work alone.
• Myth: ”Movements require complete internal unity.” Reality: movements move forward because of and despite disagreements. It’s useful to think of disagreements as polishing stones: when we rub up against each other with our dissonant ideas, we have the possibility of mutually clarifying our collective agendas. As Hunter writes: “Successful movements always have internal disagreements and division. Working for unity is great, but so is accepting the reality that ideological purity isn’t a requirement for us to engage in continuing a movement together.” I needed to read this. I needed a reminder not to shame people who share my overall worldview but don’t work towards that worldview in the way that makes the most sense to me. Again, what is important is the work. Always forward.
• Myth: “Movements succeed if they mobilize large, mass actions.” Reality: Mass actions may give a focal point to a growing movement, but single mass actions can be dismissed and waited out. I needed to hear this, too. Marches, protests, and boycotts are being organized all around me. Because of my own physical disabilities, I probably won’t be able to participate in marches. Rallies cost me days of strength. I can take other actions, but large, mass actions are not available to me and many other people. (Reminder to those who organize mass actions: if your mass actions aren’t accessible to disabled people, then they don’t represent the totality of the movement.) I needed to see, in print, that big, public actions aren’t the only kind of work that matters. I don’t want to dismiss the importance of these actions. But I also want to engage in work that continues a movement forward, past an initial emotional flashpoint. Civil Rights work is always, always a long game.

Hunter also clarifies the four primary roles people play in social change movements: helpers, advocates, organizers, and rebels. All four of these roles have strengths and weaknesses; all four are necessary to movements. Helpers provide direct services, such as giving food or supplies to families in need. In this way, helpers are engaged in direct action, providing resources to people who otherwise would not have access. We need helpers in every movement, but as Hunter points out, helpers need to be careful not to turn into what I’ve heard referred to in the disability rights community as ”helpy helpers,” people who “help” so much that they begin to undermine the agency of the people they are trying to help. Hunter also points out that helpers who are not aware of structural oppression tend to fall into the trap of believing that the people they help need help out of some sort of personal failing. For example: helpers might be willing to donate to families in need of food or shelter, but fail to see and engage with the reasons why these families need food or shelter as part of larger systemic practices. Helpers might be willing to participate in walks sponsored by Autism Speaks, but fail to see that Autism Speaks has a long history of devaluing Autistic people, and that Autistic people actively lead boycotts against Autism Speaks. Helpers might be willing to open doors for wheelchair users, but might not notice the vast number of doors in their community that are not mechanized and therefore limit access. Noble intentions and all that, but helpers who provide aid without thinking critically about the type of “help” they are providing can do real harm. Don’t stop giving. Do start thinking about why people are in need in the first place.

Advocates work within existing systems to ensure that people in need get the resources they are due under the law. Advocates have a specialized skill set, typically in one area of law or another, such as elder law, or civil rights law, or special education law. Advocates are also necessary for overall movements. But the drawback of being an advocate is that one can be so enmeshed in existing laws that one fails to see how the laws themselves are oppressive. This particular section hit home for me. I am trained as a Special Education advocate; I am not an attorney, but I work within the laws that pertain to Special Education. I am trained to help parents secure the best possible accommodations and education placements for their children within the confines of the law. When I was going through my training last year, I was often uneasy. As we studied small bits of the law, it would strike me that the law itself is unjust, or that lawmakers clearly did not consult with disabled people before passing the law, or that what parents are most often encouraged to do for their disabled children under the law is opposed to what actually disabled people urge us to do as a matter of agency and Civil Rights.

An example: the gold standard for “therapy” in autism circles is ABA (Applied Behavioral Analysis). Schools are required by law to provide “research-based practices” in their teaching and interventions. In education and legal circles right now, ABA is considered research-based practice. When parents have their children evaluated, assessors who diagnose autism nearly always immediately recommend an intensive program (up to 40 hours per week!) of ABA “therapy.” Schools regularly deny parents access to the number of ABA hours that have been suggested to the parents because ABA is expensive. Many, many parents seek out advocates to try to secure the number of ABA hours they think their children need, or seek compensatory damages in order to get their children into private schools that are ABA-based so that their children will have ABA-enriched lives. (There’s a case about this issue in front of the Supreme Court right now, in fact: see Endrew F. v Douglas County School District.) As part of my advocacy training, we talked about how to get the ABA hours that evaluators think children need. We did not, however, discuss the voluminous commentary provided by Autistic adults who have actually gone through ABA “therapy” and who have developed PTSD because of ABA therapies (See, for example, this crucial essay by Sparrow Rose Jones.) This was and continues to be a conflict for me. I have two Autistic children who I would never place in ABA therapy because I do not believe in compliance training. My advocate training teaches me to fight for more of this “research-based” therapy; my Disability Rights activism background encourages me to (figuratively?) burn ABA to the ground. I’m not sure yet how to reconcile this, but now I understand why I was so uncomfortable during my training. I came to advocacy as an organizer and a rebel, not from the legal background of an advocate. I came to advocacy for the Disability movement, and in order to live with myself, I need to always have the movement in the front of my mind.

Organizers, another crucial role in movement development, do what their name suggests: they bring together individuals and groups and help those groups create pressure on oppressive systems. Organizers see a need, find the people who can help with the need, bring them together, and formulate plans to address the need. I have also found myself in an organizer position, most recently last year when I co-founded TENT: Twice Exceptional Network of Texas. Clearly, movements need organizers, but organizers, too, have their drawbacks; the most significant problem for organizers is their frequent inability to step back and let the people for whom they have advocated take leadership roles in the organization. Organizers often started out as allies in a movement. A good example would be parents who care deeply about their autistic children, and put together an organization to advocate for their children. Or, for example, grandparents, such as Bob and Suzanne Wright, who founded Autism Speaks on behalf of their grandson. These children, however, grow up. These children have minds of their own, lives of their own. What is the good of advocating for our children if we do not teach them to advocate for themselves and then step aside and let them do it? What is the good of advocating for an oppressed group if we do not listen to the actual people who are oppressed? Case in point: Autism Speaks has been roundly criticized for silencing #ActuallyAutistic people within the organization. For many years, the board of Autism Speaks lacked even a single Autistic member. It is crucial for organizers to keep the movement in mind, to remember that they got started out of the wish to end a particular kind of oppression. Preventing the people for whom they advocate from taking leadership roles in the actual organization is just another kind of oppression.

Finally, there are the Rebels, the people who are willing to put themselves on the front lines, the people who will engage in marches, sit-ins, protests, and other acts of civil disobedience. Rebels are the most public face of movements. And rebels, who are always willing to act, often become impatient with the organizers, advocates, and helpers for working within already-compromised systems. But rebels need the other roles, if only to bail them out of jail and provide safe spaces for them to continue to do their work.

When we think of movements, we often associate the movements with the rebels who became famous or infamous because of their visibly bold acts. And maybe we think of the organizers. We are, however, rarely aware of all of the diversity of roles people played in working toward a specific social change. The upshot of this chapter is this: before we jump into a movement, it behooves us to identify what role we are each best suited to play. And then we should play it, contributing what we can to what others are doing, recognizing that what we each have to offer is valuable and necessary, and having as our primary goal the empowerment of the people we fight for. These steps, and the internal work they require, are the beginning of a process that can sustain a long-term movement. I’ll discuss Hunter’s next steps–forming strong groups and mounting strong campaigns–in later posts.

 

*I wish to thank Andrew Dell’Antonio, William Cheng, Stephanie Jensen-Moulton, and Dani Alexis Ryskamp for their rich feedback on earlier drafts of this post.

 

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.

Special Education identification: what we’re up against in Texas

READ: “DENIED: How Texas Keeps Tens of Thousands of Students out of Special Education,” by Brian M. Rosenthal

In today’s Houston Chronicle, reporter Brian M. Rosenthal exposed a decade-long policy that has led to the denial of special education services for hundreds of thousands of kids. In a nutshell: the national average of kids who receive special education services is 13%; in Texas, our state education agency (TEA) has artificially kept our average to 8.5%.

“Over a decade ago, the officials arbitrarily decided what percentage of students should get special education services — 8.5 percent — and since then they have forced school districts to comply by strictly auditing those serving too many kids.

Their efforts, which started in 2004 but have never been publicly announced or explained, have saved the Texas Education Agency billions of dollars but denied vital supports to children with autism, attention deficit hyperactivity disorder, dyslexia, epilepsy, mental illnesses, speech impediments, traumatic brain injuries, even blindness and deafness, a Houston Chronicle investigation has found.”

TEA has accomplished this goal by systematically denying services to kids with disabilities of all types. (Rosenthal provides a close look at several common strategies districts employ to deny service.) Kids in large cities–particularly those for whom English is not a native language–suffer the most, Rosenthal has found. “In all, among the 100 largest school districts in the U.S., only 10 serve fewer than 8.5 percent of their students. All 10 are in Texas.”

Advocates, attorneys, and parents in Texas have been aware of these numbers. Legislators, according to this investigation, apparently have not been aware of these numbers, nor of the TEA’s policy. TEA continues to deny that the severe reduction in identification (from around 12% in 2004 to 8.5% now) was purposeful. District Special Education coordinators also fail to see the numbers as a problem, arguing tautologically that their local levels reflect state averages so they must be on target. I’ve done independent research about identification in my district and neighboring districts and have found the following data (freely available on TEA’s website). The percentages below are the district percentages of kids served under IDEA in the 2014-2015 school year, the most recent data available.

• Austin ISD: 9.9% (identification rose to 10.2% last year)
• Round Rock ISD: 8.5% (exactly like the state average, hmm.)
• Eanes ISD (a district in / near the city of Austin): 7.9%
• Lake Travis (just north-west of Austin): 7.0%
• Leander ISD (a bit more north of the Lake Travis district): 9.7%
• Hutto ISD (just east of Round Rock, where I live): 9.2%

I could go on and on, but this is enough to make the point: every one of these districts falls far short of the national average. And contrary to what districts argue, these numbers aren’t lower because early intervention eases the need for support by the time children are ready for Kindergarten. Let me put it this way: if a deaf / hearing impaired child is identified as needing services at birth, how will she be less deaf / hearing impaired at age 5 and less in need of accommodations at school? Sounds ridiculous, yet this Chronicle study has found that identification / provision of services has fallen by 15% for deaf / haring impaired children since 2004. Rosenthal estimates that if Texas actually complied with Federal law, about 250,000 more kids would receive services (In 2015-2016, Texas public schools enrolled almost 5.3 million kids.) What happens to these kids?

“Parents have pulled thousands of them out of public school in favor of home schooling or expensive private schools, according to interviews and data.

Others have been left to languish in regular classrooms without the individualized help they need, advocates said.

Many have fallen behind, become depressed and been suspended or expelled, the advocates said. Some have even entered the criminal justice system or otherwise required intensive adult services that cost far more than special education, they said.”

Homeschooling a kid because schools can’t accommodate him? You don’t say.

In a separate blog, I’ll deal with how these numbers overlap with 2e identification. It’s an interrelated SNAFU with its own glorious details. In the meantime, If you are a parent in Texas, know a parent in Texas, or simply care about whether or not ALL of the children in Texas deserve a Free and Appropriate Public Education, please share Rosenthal’s research. See how your state stacks up with Texas. Be suspicious if your state’s rate of identification is under the national average and dig deeper. Join us as we put pressure on our state officials.

*UPDATE: The Houston Chronicle is seeking additional testimony from families whose children have been denied Special Education services. If you want to participate in this on-going investigation, here is a form to contact the newspaper.

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.

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 disabilities. By 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.