October 19, 2013

With Shea

(Updated below, 11/4/13...)

Lately, we've been watching the story of Shea Shawhan very closely.

There are a few reasons I've been so interested. One is that the story is just so awful. Shea is a high school junior who suffered a brain injury at birth and has been developmentally disabled ever since. She also experiences pretty serious seizures. The news stories I've read have all stated that she has the intellectual capacity of an eight year-old, and while I usually shy away from those kinds of statements (I don't know that most kids with developmental disabilities develop at equal rates in all areas of their minds; that's certainly not true of Schuyler), it nevertheless allows the reader to at least try to understand what her high school life might be like. In a lot of ways, she seems very much like Schuyler.

Her disability isn't the awful part, not one bit. By all appearances, Shea's life is a rewarding one. She plays softball at her school and is even on the cheerleading squad. She seems well-loved and well-adjusted, living her life on her own terms.

No, the awful part is the texts. For months, Shea has been receiving anonymous (of course) text messages, harassing her, threatening her, and heaping the most vile insults concerning her disability on her. I'm not going to repeat them here. The texts were generated at a website that masks the user's actual number, so for the time being, the identity of the sender is hidden. I can't imagine that will be the case for long.

As I said, I've been following this story for several reasons, beyond just how awful it is. Shea reminds me of Schuyler in a lot of ways. Seeing her speak on television, it is very easy for me to imagine an older and verbal version of my daughter. Shea is eighteen; that's an age that isn't all that far down the road for Schuyler. I've followed the story because like Schuyler, Shea is a cheerleader, and is working hard to walk in the world of her neurotypical classmates. I understand how tricky that can be, and I get exactly how much she probably wants to be able to do so. It's a desire that Schuyler shares, and one than we try hard to accommodate, even though we know how treacherous and heartbreaking that choice can be, the decision to pass and to try to carve out a space in an often unsympathetic neurotypical world.

Our interest in Shea's story goes deeper still, however. Because Shea attends Plano West High School.

The school Schuyler is on track to attend in three years.

Before I go further, I should hasten to add that so far, Shea's story has taken a pretty positive turn. Her mother was extremely proactive and took the story public, even working towards creating a nonprofit, ImWithShea, Inc., to campaign against bullying. Cyberbullying is a justifiably hot topic in the news media these days, and the story got picked up in a hurry. As a result, the student population and the community at large have been very supportive of Shea, and she's become something of a local celebrity. (Schuyler has been particularly taken with Shea; she keeps asking about her "little monster", and about her cheerleading. I think Schuyler is intrigued by the possibilities that someone like Shea Shawhan represents.) Shea is feeling a lot of love at the moment, and the students at Plano West have gone out of their way to illustrate that the person or persons sending those texts don't represent their school.

It's all been very positive lately, but I worry. I worry that, like many of the special needs kids who are celebrated in the media, the world might return to its harder ways for Shea once the camera crews leave to follow the next shiny thing that catches their collective eye. I worry that the hate that was sent her way before is simply waiting patiently for the lights to go out so it can re-emerge. I'm concerned because despite all the positive lip service coming out of the Plano West student population, not one kid has come forth with any knowledge of who is committing these atrocious acts. I understand that there's a kind of code in teen culture, one that exists outside the access points for adults. But I also get that it's perhaps easier to adhere to that code if you can justify your silence by seeing classmates with developmental disabilities as being somehow less. Less deserving of your empathy. Less valuable to your school community.

Less human.

Most of all, even though I know that this is the kind of thing that can happen anywhere (as if that's comforting), I still find myself thinking "And this is the school that we're going to send Schuyler to?"

Schuyler has never been exposed to online hate speech. Not directly, anyway. Her access is still carefully moderated. She's protected from direct contact on social media, and only a few of her friends communicate with her via text message. That won't be the case forever, but for now she's mostly uninterested in having more online autonomy, and we're certainly okay with that.

One day, and soon, that'll change. Her special way of communicating is perfectly suited to social media, and it's only a matter of time before she steps into a world than a good many of her classmates already occupy. What will happen then? Is that online world populated by jackals? Will Schuyler emerge into an online world, without her parental buffer, as fresh meat?

Schuyler doesn't always understand her classmates and how they relate to her. Cheerleading hasn't helped like we'd hoped it would. In some ways, it has served as a microcosm of the middle school teenaged girl experience, a place that has less in common with the Disney Channel and more with Lord of the Flies. We've been asking ourselves over and over if letting her be a cheerleader was the right choice, but of course it's far too late for that to be a productive conversation. She's working hard to fit in, and she's also committed to it. That's her choice, not ours.

Shea Shawhan is a cheerleader at the very school Schuyler is scheduled to attend for 11th and 12th grade. That fact alone suggests possibilities for Schuyler that we never entertained. That's a positive thing, there's no doubt about that. But clearly, at least one person at Plano West doesn't appreciate those opportunities being extended to kids like Schuyler and Shea.

The fact is, there are many, many people in the community who don't believe in inclusion. Sometimes they express themselves poisonously, like the anonymous texters harassing Shea. But sometimes these people stand up, at school board meetings or in letters to the editor, and use language that sounds measured, even reasonable. They don't always sound monstrous, which scares me even more than the cyberbullying.

Some parents don't want our flawed, beautiful, imperfectly perfect kids in the same classes as theirs. Some students don't want to sit next to them at school. Some members of the community don't want to see cheerleaders or homecoming queens with disabilities walk onto that football field on an autumn Friday night. Some don't want authentic relationships with the disabled. They are put off by imperfection. They fear difference. They may be horrified that someone said those things to Shea, but in their secret hearts, they may have even thought similar things themselves.

I don't think there are very many people like that, not now, in 2013. I've seen communities stand up for kids like Shea when their situations become public. I've witnessed kids treating Schuyler with genuine friendship. The world that kids like Shea and Schuyler occupy is mostly good. I truly believe that. I don't believe it all the time, perhaps, but my faith in humanity can take a little shaking without falling to pieces.

But we've all seen so many tragic cases of what school bullying can lead to. We've read the heart-crushing stories of the kids who have had more than they can bear, and we've seen them end their lives. It has become one of those media narratives that is depressing in its familiarity. It happens to kids who are different, and some of those differences can seem insignificant to us as adults.

Kids like Schuyler and Shea are different in ways that aren't always subtle, and which are almost never overlooked by their peers. So far, Shea Shawhan seems to be handling the situation with courage and grace, thanks in no small part to a great deal of family and community support. I don't know how Schuyler would deal with that same kind of situation. My heart tells me that she wouldn't take it well at all. I hope I never get to find out.

Photo zazzed up by Schuyler

UPDATE, 11/4/13

Before I wrote the above post, I contacted Kerri Riddell, Shea's mother, to make sure she would be okay with me writing about her daughter. She very kindly and enthusiastically agreed, and what followed was a correspondence that quickly shifted to direct contact between Shea and Schuyler. Shea invited Schuyler to come meet her at a Plano West football game last Friday, and we were happy to accept the invitation.

(A local news station ran a short piece on the game. Watch all the way through for a surprise in the last five or ten seconds.)

I'm not sure what to say here about the whole experience, mostly because Shea's story is hers to tell, and her mother's, but certainly not mine. I will simply say that it was extremely emotional for everyone involved, with two very unique girls who were happy to meet each other, even as their own individual disabilities and communication issues presented challenges. At the end of the night, Schuyler was overwhelmed enough to cry, something she hasn't done in a very, very long time.

I don't know if they'll meet again. But I sincerely hope they do.

Please visit I'm With Shea.

October 14, 2013


Today, at Support for Special Needs:
So sometimes you just have to stop. Your all-encompassing love sustains you through the hardest times and it's recharged by successes and moments of clarity, but love isn't enough, not always. It's the most rewarding life you can undertake, and you will grow in ways you can't have imagined at the beginning, but sometimes the experience of advocating for and taking care of a special needs child feels like stepping out into a maelstrom. Every so often you have to hit pause, or you will surely be swept away.

October 7, 2013

The Invisible Man

This morning, there's a new post at Support for Special Needs:
If you are writing about an issue that affects you as a disability parent, and if that issue doesn't relate to something that is specific to the experience of being a mother, I'm not going to ask you not to address your concerns to "special needs moms" only. But I am going to ask you why you're making that choice.
Is it because in your experience, mothers are the ones doing the heavy lifting? That makes sense; the statistics certainly back you up to some extent. But if that is in fact your perspective, I have to ask you, do you like it that way? And if you don't, how do you feel about a societal narrative that feeds this perception? More to the point, how do you feel about participating in the reenforcement and perpetration of this narrative?

October 3, 2013

A Human Advocacy

I just had a piece run this week, over at the Huffington Post:

When I examine all the interactions in my own life, it's with my daughter that I find myself developing the closest, most authentic, most real relationship. And it's one built not so much on words, which can be difficult for her, but largely on shared experience. It's important to me that much of that experience takes place in her world, sometimes internal and sometimes very much not, and on her terms. Knowing Schuyler means loving her without expectations of adherence to a societal narrative.

Authentic human relationships. Friendships without pity and lacking power imbalance. Unconditional love, not the kind you might feel for a beloved, well-tended pet, but the kind of love built on mutual fascination. The kind that comes from real listening. This is the path to real advocacy. This is the real work, the kind where changing the world mostly involves changing ourselves.

This piece was aimed primarily at the general public, rather than the disability community. (That choir hears my preachiness plenty enough already.) If it feels a little like the things I was writing earlier this summer, it's probably because this piece has been in HuffPo's queue for a few months. I'm really glad it finally ran, and I'm thankful to the folks there for publishing it.

September 30, 2013


Today at Support for Special Needs:
I can remember back when it felt like we'd never be able to forget, even for a moment, what hung over her head. But time passes, Schuyler grows and becomes more adept at moving through this world, and so her reality is less front and center. Her brain is so creative and effective in its rewiring and rerouting that it's easy to forget how profoundly malformed it is, anywhere from sixty to seventy-five percent of it affected by her polymicrogyria. It's easy to fall into a place where we simply assume that this brain, broken and clouded but working with startling effectiveness, will always function with such inexplicable success. Schuyler's brain hasn't failed her yet. It hasn't experienced the kind of seizures that her doctors expected, none of the grand mal variety that were supposed to lay her low years ago. It's very easy, at least subconsciously, to confuse her current fortune with a guarantee.

September 23, 2013


Today at Support for Special Needs:
For families like ours, the paths we walk aren't ones that are all that well-travelled. We don't always have that many examples of How Things Are for families of children with disabilities that are both subtle and conspicuous, and so we find ourselves searching for those paths, threading carefully, balanced between extreme possibilities.

September 16, 2013

The Things We Do Not Say

Today at Support for Special Needs:
For parent advocates, there are rules now, I am told, for the things that we can and cannot say. Break those rules, and we are dehumanizing the very people we profess to love. Say the things we are not supposed to say now, and we are causing harm. Express the things we are told not to say, and we demonstrate that our love for our kids isn't real.

September 9, 2013

Stealth Monsters

Today at Support for Special Needs:
Parents of special needs kids with less visible disabilities spend a lot of time trying to moderate the effects of curiosity and casual observation. We worry that our kids will be judged unfairly by the outward manifestations of their disabilities. When our kids manage to pass unnoticed through the world, we find ourselves admitting, with varying degrees of shame, that we are proud of them for avoiding the judgment and scorn of a cold society. But it's safe to say that we do the same things ourselves. It's different for us, of course. When we identify a kid having a meltdown in public as something besides an entitled brat, we do so with empathy. But we still do it. We still play our own version of "What's going on here, exactly?"

September 2, 2013

Everyone communicates

Today at Support for Special Needs:
It's when we are faced with the subtle, nonverbal communication tools of the disabled that we find ourselves challenged to learn the language of the land, and learn it quickly and without translation to ease the process. How much easier it is to simply declare communication as unattainable, and to place the blame for that failure at the feet of the disabled.
2007: Schuyler's howl of joy upon seeing the Empire State Building for the first time.

August 26, 2013

The Outrage Machine

Today, at Support for Special Needs:
If there's anything that social media seems to do the most easily, it is to serve as a great machine, churning and huffing, with gears grinding day and night. And the product the machine produces and replicates and reproduces relentlessly is outrage. Facebook and Twitter serve as its two greatest cogs, but the Outrage Machine is complex. And god, is it efficient.

August 21, 2013

The Letter

Today at Support for Special Needs:
If you're a special needs parent, you've probably seen the letter by now. It's been making the rounds for a few days. It was written and delivered anonymously to a family in Newcastle, Ontario, in response to their autistic child's presence in their neighborhood. I'll link to it, sure, but I won't quote it at length. I'll give you a few words from the letter, and you can probably get the drift.

"Nuisance." "Problem." "Noise polluting." "Idiot." "Retarded." "Move away."


August 13, 2013

Hope and Fear, and Summer's Passing

Today at Support for Special Needs:
It's funny, the future. Sometimes it ambushes us, with a surprise diagnosis much worse than expected, or a seizure in a public place, or wicked words from a stranger. But sometimes, it unfolds exactly as it should. Exactly how you need it to.

August 5, 2013

The Peril of What If

Today at Support for Special Needs:
Sometimes the What If Game cuts both ways. What if our children really could be cured, or helped to the point that their disability is all but defeated? What does that do to their sense of identity? What if it changes the essence of who they really are, in a fundamental way? What would our relationship as parents represent then? What is my responsibility? Is it to protect that basic sense of self, or to fight to open doors that may lead them to places we never dreamed of? Are those places necessarily GOOD places?

August 1, 2013

A Day of Note

There were two notable things about yesterday.

It marked the ten year anniversary of Schuyler's diagnosis for bilateral perisylvian polymicrogyria. It was the day we received all the gloom and despair prognostications for her future.

And yesterday was the last day of her cheer camp, in which she performed with her middle school's eighth grade cheerleading squad, along with hundreds of other girls from other schools. Almost all of them neurotypical, and almost all of them indistinguishable from Schuyler in their demeanor, behavior and performances.

These two notable things have nothing to do with each other.

These two notable things have everything in the world to do with each other.

I can recall everything about that day in 2003. I remember how beautiful the weather was, a perfect Connecticut summer day, and how insulted I felt by this. It would have been entirely appropriate to find dark clouds hanging low over the Yale campus where Schuyler's doctors had just delivered the news to us. The news, and the future.

Schuyler's brain was profoundly malformed, perhaps as much as 75% of it. She would probably never talk, or write. She would most likely be severely mentally retarded (a term that was still kicked around by professionals at that time). She would almost certainly have dangerous seizures, probably beginning in the next few years. She could require a severely restricted diet, possibly even a mostly liquid intake. And her fine motor skills would be severely impaired for the rest of her life.

Schuyler's future was spelled out for us that day, and in the weeks and months to come. In retrospect, I guess we forgot to tell her about all the things she would never do, and all the ways she would be broken.

Cheer camp lasted for three days. The girls, all if them eighth graders, were instructed by whom I can only assume were adult cheerleaders, incredibly enthusiastic and frankly scary young (but not THAT young) men and women in cheer outfits not much different than the ones worn by their students. I wasn't sure what to make of them, and I'm still not, but by golly, they turned those girls (all girls at every school) into cheerleaders.

Eighth grade cheerleading squads in this public school district are inclusive, so anyone can join, and there were a few special needs girls that I noticed. I'm sure there were more like Schuyler whose disabilities were largely invisible.

For her part, Schuyler disappeared into a sea of spirited girls in identical outfits and coordinated routines. The only thing setting her apart were her wristbands, and even those matched her uniform perfectly.

When I sent video of the squad's performance to her godparents, Jim admitted that he couldn't pick her out of the rest of the squad. He noted that this was a very good thing.

And it was.

Schuyler was a cheerleader. She did everything the rest of her squad did, and she did it with poise and charm. No one could hear that her words were muddier than the girls around her. No one could see that she had to try a little harder to learn her routines. Schuyler adjusted her work and her performance to counter the obstacles thrown in her path by what she calls "the little monster in my head". She beat it back for another day. She didn't defeat it -- she'll never defeat it -- but she defanged it.

And she kept a journal...

:) Next year, I am going to be cheerleader. On Monday, I am going to a camp to learn to be a cheerleader. I feel happy and nervous about meeting new people and see my friends.

I want to be a cheerleader because I want to be a leader at the school. Cheerleaders helps out lost kids and taking care of the lost kids.

Day 1: I have fun today. I met good friends and coaches. I learn moves about be a cheerleader and a leader too told me to be the best cheerleader and a good friend too. Tomorrow, I am going to that same school I went today. They were moving too fast for me and my friends too. I am going to practice at home tonight and I am going to be good for tomorrow.

Day 2: Today I had fun with my friends and my coaches too. Let's go Razorbacks, let's go! Hey hey what you saying? R M S! Purple! Silver! White!

Day 3: I had super fun and learn old and awesome moves. My squad performed with the other schools. I feel like a real cheerleader now! Yeah!

Perhaps it's not the fault of doctors and therapists and teachers that they get it so terribly wrong. Maybe it's our fault, as parents, that we ask them questions they can't answer and to look into a future they can't possibly predict.

Professionals don't like to say "I don't know. I couldn't possibly answer that with any reasonable degree of accuracy." And we very much don't like to hear it when they do.

Schuyler's life is very different from what we thought it might be. Her absence seizures and complex partial seizures have been mild and elusive, to the point that both her neurologist and the doctor who diagnosed her feel strongly that even if her seizures were finally captured on an EEG, the meds she might be placed on would be much worse for her than the seizures themselves. For now, her brain is humming along largely as it should. Her developmental disability is a reality for her, but the question remains whether there's a developmental ceiling she might hit, or if she will catch up one day. Schuyler's speech is really the only piece of that original statement of doom that has manifested itself as badly as predicted.

And while it's easy to say that she has a mild form of polymicrogyria, it's not that simple. Her brain is profoundly malformed, more than a great many fellow PMG kids whose challenges are much more severe than her own.

Her brain shouldn't be working like it is. When her diagnosing physician finally saw her in person, he was shocked at her abilities. Her brain shouldn't have been capable of what it was clearly doing. The malformed parts were rerouting, reprogramming, and rewiring.

His message to us was clear. Celebrate this magical superbrain of hers. Push her as hard as you can, and let her find her own limits. But don't trust this miracle, not entirely.

We don't. We can't. For families like ours, miracles are suspect. But every day so far, this broken yet unbreakable brain gives Schuyler the complicated, chaotic but happy life that she's got. We understand how lucky she is. We hope and we hope and we hope for her luck to hold.

In ten years, she's not just fought with a monster. She's negotiated with it, made a kind of pact with it, one that I don't understand but am wildly thankful for all the same.

To that monster, I can only say this. Happy anniversary, you motherfucker. We're still watching you.

July 29, 2013

Feeling Good, and Doing Good

This week, at Support for Special Needs:
If you find those stories to be inspirational in a way that feels meaningful to you, I hope that’s the beginning of something, not the end. If you watch that story and see how much a disabled person’s life can be changed by moments of kindness and a short ride in a world that otherwise elutes them, I hope you’ll ask yourself what you might do, either in your place of business or the school your child attends or as a voter in your community, to change that rough world.

July 22, 2013

Leave the Ladders in Place

This week at Support for Special Needs:
For those of us charged with caring for and helping to build independent lives with loved ones with disabilities, trust can become hard to extend. We’ve all been burned. When we see someone like Greg Abbott build a career with the benefit of a lot of good people’s hard work, only to pull the ladder up behind him, we’re not shocked.

July 15, 2013

Of Tribes and Truths

Today at Support for Special Needs:
I watch the disability community again and again choose to address its issues by forming up into circular firing squads and shooting each other in the face with breathtaking zeal. I imagine the policy makers and the school administrators and the everyday citizens with no exposure to our lives and our worlds. I imagine them watching our infighting and our persistent dedication to choosing the low road, and instead of pondering the issues that are of importance to this community, they might simply conclude "Wow, what a bunch of assholes."

July 8, 2013

A Monster's Birthday

Today, over at Support for Special Needs:
It's been a decade since all our unanswered questions and vague fears about our daughter's developmental issues and lack of speech development coalesced into an awkward string of words -- congenital bilateral perisylvian syndrome, later renamed bilateral perisylvian polymicrogyria -- and a list of possible outcomes, all of them daunting. Ten years since our lives became altered by uncertainty and a monster sitting forever in the room, unknowable but omnipresent.
July 2003, shortly after Schuyler's diagnosis

July 1, 2013


This morning, at Support for Special Needs:
Schuyler made a neurotypical friend her age, and that friendship will grow, if it grows, the same way her recent failed relationship grew. It'll happen by text, through the power of words that Schuyler is beginning to well and truly make her own.

June 24, 2013

Schuyler's Season

Today, at Support for Special Needs:
During the summer, Schuyler is less aware than ever of her disability, which is more than fine with me. Almost everyone she meets is a friend, not a therapist trying to measure some aspect of her skills through contrived friendship, or an evaluator trying to identify or construct phony limits to her capabilities. During the summer, Schuyler is meeting people at the pool, or at her summer baseball programs. Her new acquaintances are made to the sound of splashing and laughter and the croaking of cicadas, which we call "hot bugs" because they seem to be at their loudest when the air is thick with humidity and cartoonish heat lines wiggle up from the pavement.

June 18, 2013


This morning at Support for Special Needs
When I write about the importance of true and authentic relationships with people with disabilities, this is part of that. Humor like this isn't funny unless you can dehumanize your target. There's no question about whether you'll get away with it if you understand that the vast majority of people who might hear you will believe down to their core that a human being with as much worth and value as themselves has been treated unfairly. In a world where that humanity is not just acknowledged but truly and deeply felt, this kind of behavior will be relegated to the fringe of society. It's the kind of thing that should feel toxic, radioactive. It shouldn't take thought in order to recoil from it.

June 14, 2013

Father's Day at the Huffington Post

The very cool folks at the Huffington Post asked me to contribute an essay for Father's Day, so here it is, "What I Know About Fatherhood Now That I Have a Teen With a Disability":
In the midst of all my fretting and errors, Schuyler has quietly persevered, and found her own successes. With time, I've finally started to see how she might make her way through a rough and beautiful world.
And I like to think I've learned a few things, albeit through trial and error and error and error.
Happy Father's Day to all you dads out there, and to all of you who are doing the work of fathers. Our moment in the sun may be fleeting, but maybe you'll get a nice tie out of the deal.

June 12, 2013

Sea Change and Mr. Baseball

When I write about how truly effective disability advocacy requires entering into authentic relationships with the disabled, it helps to have some solid examples of what that might look like.

Meet Cory Hahn.
(Mark Boster, Los Angeles Times)
Just a few years ago, Hahn had a future in baseball. As a high school player in California in 2010, he was selected as the state's Mr. Baseball, batting .411 and leading Mater Dei High School to a state title. He was drafted by the San Diego Padres in the 26th round, but turned down the selection in order to attend college at Arizona State.

It was in his third game with the Sun Devils, in February 2011, that Cory Hahn slid headfirst into second base and suffered a spinal injury that left him paralyzed from the chest down.

Cory Hahn had a future in baseball. As it turns out, he still does.

This week, in the 34th round of the Major League Baseball draft, Cory Hahn was selected by the Arizona Diamondbacks.

We've all seen stories about kids with disabilities being allowed to come out on the field of play and participate in some way for a few minutes. They are typically feel-good stories, and there's a little something in it for everyone. The person with the disability gets to experience that participation, the other kids and coaches get to feel that intoxicating feeling of Doing Something Good, and the media gets a story that passes for a little good news before moving on to the gruesome crime of the day.

Most of all, we as a society get to feel as if something has been accomplished, that some measure of social justice or real advocacy has come to pass. It's inspiration candy. It gives us a quick sugar high before things go back to the way they were. The disabled kid of the moment takes off his football jersey and goes back to his special education class, and that class will be just as satisfactory or just as lacking as it was before. As a lasting legacy, he receives a newspaper clipping, not a future. Inspiration candy isn't nutrition. It can be well-intentioned, it can be sincere, and it can come from the very best place. But it can't be the end point. It can't be the standard for which authentic relationships with the disabled are measured.

On its surface, the story of Cory Hahn's selection by the Diamondbacks felt suspiciously like inspiration candy. Barring a medical miracle of biblical proportions, Hahn is not going to play ball for the Diamondbacks. His draft by the team on its own is symbolic of their respect for him as a player and as a dedicated human being, but it's still symbolic. When I first read this story, I was hoping for more.

There was more.

From the Huffington Post:
The Diamondbacks emphasized to The Huffington Post on Monday that they intend for the pick to be more than just symbolic. The organization plans to offer Hahn a job, perhaps in its farm system at first. 
Team president and CEO Derrick Hall wrote the following in an email to HuffPost: 
"We have not discussed with him so I would not want to get too far ahead, but we would like to ease him in during his final year of school, perhaps video work with our minor leagues based out of Salt River Fields and then look to full-time baseball operations opportunities upon graduation."

In another statement, Derrick Hall said:
"We want to make this permanent. We don't this to be just about the selection and him being a draft pick. but about him working in full-time employment with the Diamondbacks."

After returning to school, Cory Hahn has been working as an assistant coach with his old team. Hahn's talents and his skills are more than his physical abilities, and the Diamondbacks recognize that. Picking him in the MLB draft has PR value, but committing to a long-term professional relationship is something else entirely. Major league baseball teams make decisions like this based on what's best for their organization. In looking at Cory Hahn and what he brings to the table, the Arizona Diamondbacks have done just that.

This is what those authentic relationships can look like. Beyond pity, beyond charity, and even beyond a truly sincere desire to help. When relationships with persons with disabilities become mutually beneficial, when both parties find growth and value, and when the abled recognize the incredible potential when taking the time to explore possibilities that don't present themselves in an easy way, something very new and very real starts to happen.

This is the sea change that so many hope for. This is what that might look like.

June 10, 2013

Becoming Superfluous

Today, at Support for Special Needs:
I know now that Schuyler can make it without me, and probably even thrive. I understand in a way that has perhaps eluded me before now that if something were to happen to me, if I were to be run down by a train or crushed by an errant piece of some uninspected airliner falling from the sky, Schuyler would be taken care of. More importantly, she would be on the road to taking care of herself.

June 3, 2013

On the Question of Humanity

Today at Support for Special Needs:
Not every dehumanizing party sounds hateful. The most dangerous among them sound downright reasonable. They are the ones who stand most defiantly in the way. They are the ones who go to city council or school board meetings and with voices both calm and reasoned make the policies that weigh down our loved ones like chains, or make them invisible altogether. They are the ones who make services and education for the disabled sound like entitlements, or luxuries that we might be able to afford next year, perhaps. They are the ones who reject individual social responsibility in favor of community Darwinism, and make basic human rights sound like a choice that we can easily reject and still sleep soundly when we get home.

May 27, 2013


Today at Support for Special Needs:
There has been so much conversation, so many choices to be made, all focused on enabling Schuyler to have the opportunity to fully realize the potential of the technology that so many people worked so hard to provide to her. That technology has changed her life. The early years are crucial to language development. It was almost too late when she first started at the age of five, and we did what we had to do to give her that tool before the doors slammed shut for good, pride and principles be damned. I would do it all over again, except years earlier.

May 23, 2013

She's waiting.

Schuyler's IEP Redux took place yesterday. Her previously unsatisfactory speech and language goals were revisited and the new plan for restoring Schuyler's AAC proficiency was worked out, at least on some level. How did it go? I'm not sure how to answer, honestly. The specific goals we wanted were added with a minimum of resistance, and some really good discussion took place that I think will lead to improvements next year. There's a big thing we're asking for that I don't think we're going to get, and it feels important enough that I really believe that without it, everything else might just fall apart, so I'm advocating hard. But no decisions about this big thing were made yesterday, which I suppose is something not altogether like bad news.

The meeting was going well, and Schuyler was listening attentively to our timeframes and our plans for implementing better AAC standards. She answered questions and understood (and agreed to, more importantly) the things we asked her to consider for next year. It was clear she was thinking a great deal about all this, about how her verbal expression needs to take a backseat to her assistive technology for now, and the kind of communication she needs to focus on in the near future. We've talked about all of this before. Schuyler is facing the future of her own communication, and she's making plans.

It wasn't until she passed us a note during the meeting that I realized all over again how much her plans still include the miraculous.

"How I can talk like my friends?"

Schuyler is looking at the things we're asking her to do, and I think she's going to be willing to do the work required to make those things happen, and to improve her situation.

But she's also waiting. She's waiting for someone to tell her when she'll be able to talk like everyone else. She's waiting for a solution, and a miracle. She's waiting for this to be behind her. Schuyler is waiting, patiently but steadfast, for her monster to leave her alone at long last.

She believes she will talk. And no amount of discussion about her brain's deeply, congenitally flawed architecture is going to divest her of that belief.

It's heartbreaking. We have this discussion every so often, maybe twice a year, and she always accepts the reality of what she's told, but with an unspoken caveat.

"I'll accept that. For now."

And the worst part is, I get it, because I don't allow myself to completely let go of this most improbable of dreams, either. I overbelieve, and sometimes that means keeping the door slightly ajar, like accommodating the return of a runaway cat that's been missing for months, or even years. I do my overbelieving quietly, because expressing it out loud doesn't do anyone any good.

Schuyler waits for something that will almost certainly never come. Even knowing the reality of her condition, I can't express that without including the "almost". She waits, and she never gives up on this hurtful dream. Knowing that it hurts her, I still can't bring myself to tell her that it can never happen, because I owe her the truth, even if it's just MY truth. And my truth hasn't given up hope, either.

This summer will mark a decade since Schuyler's polymicrogyria diagnosis. She's been waiting for someone to help her, to cure her, to fix what's broken, for ten years now. It breaks my heart that she's still waiting hopefully. It also binds my heart together a little to quietly and secretly hold onto a few strings of that hope with her.

We're fools, the both of us. I can live with that.

May 20, 2013

The Things That Matter

Today at Support for Special Needs:
It's easy to get lost in the world in which we live. It's so easy to forget how quickly things can change. It's not hard to miss how what seems like a quirk of development, an unusual manifestation of the architecture of a child's brain, can turn into epic loss with one unfortunate firing of electricity. The world we live in can feel comfortable, even when it's grey. We think about a future that might have color, but we sometimes allow ourselves to forget, for hours or days at a time, that the future could also contain bitter darkness, and that today's manageable monster may grow fierce and hungry in an instant.

May 13, 2013

One Small Light

Today at Support for Special Needs:
If you're here, you get it. You're almost certainly part of the club. You have a disability, or your kid has one, or someone you love or work with. We may not have anything else in common, but the thing that we do share isn't small. When I come here and I write about Schuyler or my own fears and triumphs as a parent, you might say that I'm right, that sounds exactly familiar. Or you might say I'm full of crap. But you're probably never going to say "Oh, that never occurred to me." Because if you're in the club, there's very little that hasn't occurred to you, often in the middle of the night when the shadows are long on the ceiling and the future grumbles softly under the bed.

May 8, 2013

No Heroic Measures

Hero. It's a word that gets thrown around rather freely, particularly in the disability community. You read about hero teachers who change the world for a kid. You read endless stories and remarks about hero parents who do things that other parents say they could never do. (This is bullshit, by the way. No one is ready to do what special needs parents must do. You learn how, usually through screwing up dramatically, you figure it out, and you do so in a hurry because who else is going to do it? You figure it out and become a "hero", or you put a hose in the tailpipe of your car in the garage and you give up. Most of us heroes choose the first option, for some reason. Well, that's what makes us so heroic, right?) You read about heroes in the community who do heroic things like daring to treat someone with a disability like a human being who has intrinsic value.

We seem to have set a pretty low bar for heroes.

I think perhaps the most troubling use of that term is also the one that is the easiest to embrace. The heroes aren't those of us who care for kids with disabilities. At best we are sidekicks, or the eccentric scientist who creates crazy cool tools for Bruce Wayne. But he's still the guy who has to take those tools and go be Batman. If anyone is a hero, it's the child with a disability who steps up and perseveres and overcomes obstacles, right?

Except it's not that simple. It's not that heartwarming, and while it might make for a sweet story on the Today Show, you can decide for yourself if one more piece of inspiration candy ultimately represents a positive step forward.

Kids like Schuyler aren't heroic. They aren't "differently abled" (unless they can fly or shoot lasers out of their eyes). They aren't here to teach us how to be better people or to show us the way to God, although they most certainly do both those things. Schuyler wasn't born to turn me from an asshole to, well, perhaps somewhat less of an asshole. Her existence isn't predicated on her ability to inspire others. She does these things, but she does so largely without trying, and without any responsibility or expectation.

Schuyler doesn't want to be a hero. She wants to be a Schuyler.

Kids like Schuyler ultimately forge their life's path for themselves, either with the help of good people or despite the machinations of bad ones. That effort can look heroic. It can require years of patience, and feats of herculean personal strength. Able bodied people can look at that effort, and we can see heroes. But it's important to remember that when we do this, we are unintentionally making a statement, to ourselves and to the world and to our kids.

We are setting them apart. We are identifying them as different, and even if in our eyes that difference is a good thing ("heroes!") rather than a thing of pity ("people who are less"), it's still an isolating difference. Kids like Schuyler face the fact that they are different every day of their lives. Some of them simply feel different; others feel broken. And the hard truth is that both of those things are probably true.

Kids with disabilities aren't engaging in heroics. They are engaging in life, striving for the things that make us all human, even if they are different, even if they are impaired, and even if they are broken. When we fetishize that work, when we elevate their daily struggles into heroics, we miss the opportunity to give them places at the table. We give adulation when the most valuable thing we can offer instead is authentic relationships.

Superman is a hero, but does he have any friends? He's a superhero, even, but can he have those authentic friendships if he's not perceived as human? (He has his "Super Friends", true. But it's important to note that they, too, are superheroes. Outsiders. Heroes set apart.)

Does that loaded word, "hero", accomplish anything positive, or are we better off without it altogether?

Now, having said all that, I must confess something, a weakness stemming from fatherhood and perhaps from overbelief. I recognize the folly of the hero concept, but I don't always push it as far away as I should. I know better, but the honest truth is that sometimes Schuyler can feel a little like a hero to me. That's not just because she was given a brain that is literally about three quarters broken and yet she's ambulatory and smart and funny as hell and a swell percussionist and a natural poet. She didn't decide to make that busted brain work despite itself. That was just one of those inexplicable miracles of science.

Sometimes, though.

Sometimes I watch how she navigates the crap hand she was dealt, and it doesn't look all that bad to me, not the way she does it. Not all the time, or honestly even most of the time, but in those Chumbawamba moments when she gets knocked down and she gets up again. I don't always see how she does it, and I wish I had those deep wells from which she draws, the ones that power her through the hard spots, which are many. I feel that way even when I realize, very occasionally, that perhaps I do possess those deep wells after all.

Schuyler isn't a hero, and she shouldn't be lauded as one, lauded and separated and ever so slightly dehumanized. She's not differently abled, she isn't a special little angel of God, and she's not doing things that any other kid wouldn't try to do if placed in a similar situation.

She's not a hero, but she is a remarkable human being. If I absolutely required the services of a hero, I suppose she would do in a pinch.

May 6, 2013

Tooth and Claw

Today at Support for Special Needs:
Overall, it wasn't a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we'd resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.
Schuyler's poem, recopied by memory as we took the photo she wanted for her blog post.

May 2, 2013

GUEST POST: A Poem by Schuyler

(I was alone with no ones there!)

The grass looks green and the sky looks blue but everything else looks gray
The pine tree looks monsters and the sea looks horses in the hill
The desert looks brown and it feel tiny and alone with no one there
The mountains looks old and wise likes wizards with their masters
I feel tiny and alone with no one there in the dark cave.
I feel super tiny in the deep way of the ocean.

-- Schuyler Rummel-Hudson

Photo concept by Schuyler

April 29, 2013

Schuyler's New Tool

This afternoon, over at the 504:
Most of all, accommodating the social integration challenges of assistive technology gives Schuyler and kids like her the possibility of a measure of independence and self-determination. Those are goals that are both persistent and tenuous. For Schuyler and her friends, self-advocacy is vital, but it flutters through their lives on gossamer wings. It's delicate, and it falls apart so easily.

Field of Dreams

Today, over at Support for Special Needs:
It's so easy to get caught up in the day-to-day issues and the differences and the anxieties of raising a kid with special needs. It's easy to forget that they have a lot of the same dreams that the rest of us had, about summers spent in itchy uniforms with local sponsors' names stitched on the back (I played for the Odessa American, the local paper) and breaking in a new glove that wasn't right until it looked like it had been run over by a truck a few times, and that perfect once-in-a-season swing that sends the ball into forever.

April 28, 2013

"...and I just want to go with you..."

Mothers and fathers have very different relationships with their children. I would never try to describe Schuyler's relationship with her mother, mostly because it's not my story to tell, and I don't understand it all that well myself.

As she grows older, I like to think that Schuyler's relationship with me becomes easier to comprehend, although that's not a given. It's certainly stronger now than it's ever been, which to the parent of a teenager is a very welcome surprise. And yet, it is still very much true that our best moments come in wordless appreciation of each other. We curl up together on the couch and watch terrible monster movies, or play games together on her iPad, or wait outside in the morning air for her bus. Quiet moments sometimes, rowdy at others, but always with an indescribable ease, and the sense that we'll always have each other, no matter what comes our way. This is a great comfort to us both, even if it's fiction. Which it probably is.

She calls me Daddy-O. I call her any number of nicknames. Schuyler Bear. Spacemonkey. Chickenhead Jones. We call each other "Big Dummy" in public places, attractive disapproving looks. Which is fine; that's probably why we do it. We step on the heels of each others' shoes when we walk through stores. We are incapable of walking past toy lightsabers without slicing each others' heads off. We share waffle fries, but she always gets the end pieces, which we call "potato butts". When I ask her if she wants to eat a butt, she always says yes. Burps are always appreciated for their merit. Farts are always funny.

The more I learn about self-advocacy for people with disabilities, the more I feel like I learn from Schuyler's interactions. She does so much communicating, so much of it in ways beyond traditional verbal expression. Talking with Schuyler means taking in so much that is spun out of her wild gestures and her expressions and the tattered remnants of her sign language. Schuyler can be easy to follow sometimes, and yet get her on the phone and she becomes almost impossible to understand, even for those of us who live with her. Schuyler's language is an amalgam of all the ways we all try to make ourselves understood, but it works in a way that is entirely her own. Understanding Schuyler means paying very close attention to her. And that close attention is rewarded, not just in communication but in a kind of intimacy, a closeness that she delights in.

I'm overprotective of Schuyler, even when I try not to be, when I know that she'll be better for taking flight on her own. I let people into her life very sparingly. Sometimes I regret it wildly; most times, she grows from the friendships she makes and I guess I do, too. I watch Schuyler try to navigate her own friendships with kids her own age, and I wish I could make it easier for her, but of course I can't.

There are times that I see something else in Schuyler, something familiar. I watch dark shadows cross her eyes, and I see her frustrations rise at simple obstacles. I observe her need for solitary time, not playing or reading but simply watching videos on her iPad or just sitting. I recognize some of it. I know that we all have our own little monsters, and I fear that polymicrogyria isn't the only one I've given to her. I was probably Schuyler's age when I became aware of my own sadness, the kind that arrives on silent feet and turns the room upside down. I've never done a very good job of managing it, although I've started getting help with it. We're making sure that Schuyler gets help, too. I'm not sure if I'm entirely past my skepticism of that help, but for her, it's a given. She's got a lot that she needs help with. That's not one that she needs to face alone.

We talked about it yesterdayday, when she noted that I seemed a little sad. I explained how for some people, sadness just kind of happens, and it's a thing that we deal with as best as we can. It's just something that happens inside our brains.

"Like my little monster?" she asked. When I said yes, she said "You have a little monster, too!" She was extremely pleased at this, for reasons that both defy explanation and yet make perfect sense.

I don't know if Schuyler will fight that same battle as she gets older. But I worry that if she does, my own sad monster will devour me, as I often feel like it inevitably will, before I get a chance to help Schuyler cope with hers. I hope she learns how to do that better than I ever did.

April 26, 2013

A Question of Trust

I have trust issues. I know this. I'm working on that.

Recently I posted a piece for Parenting.com ("The Negotiating Season") describing my perception of the IEP process. I didn't intend to present it as anything other than my own perspective, but looking back on it now, I guess I did kind of voice it in terms of a near-universal experience. I'm not terribly apologetic about that; my own conversations with countless parents has led me to the pretty solid conclusion that if anything, we've got it better than almost every other special needs family in the world. So, you know, yay for us, but boo to the bigger picture.

It wasn't long before a special educator chimed in ("Negotiating Season? Not quite.") to offer her thoughts. It wasn't rudely done at all, I'm pleased to say. She certainly does have a different perspective, and this is an important dialogue. I'm glad she wrote it.

If I have any quibble with her post, it would probably be the same one that I identified in my own essay. She presents her own experience as something of a universal one. She responded in particular to my point about the inherent conflict between the parent/family position and that of the school:

As parents, we advocate for our kids receiving as much in the way of services as we can get, and we do so knowing that our success could very well mean fewer resources for other students. That sounds harsh, but we shouldn't worry too much about that, because the school's position is the opposite. Giving each student as little as they can in the way of individual resources means more for everyone. It's an awkward dance that shouldn't be about money and resources but absolutely is.

Um, no. We do not sit at the table thinking, "let's give each student as little as we can because that means more resources for everyone." We sit there and think about what will be best for each individual student. As teachers we are passionate about your child- we want your child to succeed and we want your child to make unbelievable gains. We also know that some things that look like they will be beneficial actually can be a determinate to your child's learning. Some services look great but will hinder your child's ability to scaffold his/her learning, transfer skills and be independent. And then there is the legal aspect that we are, in fact, held to. Schools are required to provide what is considered a "free and appropriate public education" (FAPE). Sadly appropriate doesn't always transfer to your child achieving their full potential. This "appropriate" piece stumps us too. It's not us, it's the law and the courts and how the word appropriate is determined. But many of us, if we think there is a way, will fight for you.

I think that sounds wonderful. I also think it sounds like a rare thing. Like, unicorn-level rare.

Look, I've met a great many dedicated parent advocates over the years, and I've met a lot of fantastic therapists as well. And I've met and spoken with and worked with many very good special educators. The head of Schuyler's current team is one of the best yet. She listens, really listens, and she's willing to try things that are out of her comfort zone. If she were the person calling the shots for Schuyler, we'd really be accomplishing something.

But there's a hard reality at play. As we've been learning (or relearning, really) lately, the decision-making process is often in the hands of people who make those decisions based on some very dubious criteria. Not just money, either. Things like territorialism, personal bias, and a condescending disregard for dumb old parents in the process. If I ever allowed myself to believe that the kinds of short-sighted decisions that I chronicled in my book were a thing of the past, I'd be setting Schuyler up for an ambush. And I've been guilty of not taking up the fight with enough energy, particularly in the past few years. We're all paying for my failure now.

Here's an example, and I apologize in advance, because it is both long and detailed. This week, in preparation for Schuyler's IEP, I requested that an outside consultant be brought in to speak to the district's team about issues both AAC-focused and big picture. The response I received almost immediately from the district's assistive technology leader was disheartening.

Our request wasn't even considered. It didn't even make it to the IEP meeting. It was dismissed out of hand. The members of Schuyler's team have already received all the training they need, I was informed. And if dumb dad needed more training on how to use Schuyler's AAC (the same system she's been using since 2005), the AT leader would be happy to provide that instruction herself. There's no need for anyone from the outside, because what could this experienced team possibly learn from someone outside the district?

But the thing is, this district's assistive technology team has been failing Schuyler in various ways both large and small since she came to middle school. It's taken a while for that to become apparent since the special education team at Schuyler's school has been so good at helping Schuyler, but the fact remains that in two years, the focus of Schuyler's communication has shifted away from her AAC. Without the support of the AT team, and without an eye to a future in which she will require a more nuanced and comprehensive way to communicate expressively, she's been allowed to get by on her verbal communication, making herself understood in context and losing much of her proficiency on her device.

How does this happen to a kid like Schuyler, someone who has been, almost literally, a poster child for assistive tech? The answer might just partially lie in the fact that over the past two years, the only contact I've had with her assistive tech team leader has been that condescending, "there there, dad" email I received earlier this week. Until I floated the possibility of having someone with a fresh set of eyes and a new perspective on communication come in to speak to Schuyler's team, the district's AT team was perfectly okay with seeing Schuyler a few times a year and not even formulating any kind of plan for addressing her growing awareness of her difference and her subsequent reluctance to use conspicuous speech technology. They didn't even come up with the plan to switch her to the iPad, and until she began showing success with it, they were actually on record as not officially supporting it.

The point of this long-winded rant is simply this. We are in one of the top school districts in the country, and this kind of thing still happens here. This district has money, and has experience, and a sincere desire to do the right thing. And yet after all this time, here we are, trying to get professionals who have worked with Schuyler since kindergarten to listen, to pay attention to what we want and what we believe Schuyler needs. Bruised egos and stepped-on toes still drive policy from time to time, here in this best of all possible worlds.

Most parents have it worse. Most IEP meetings are charged with anxiety because team members don't understand each others' perspectives. Parents don't feel heard, and teachers don't feel respected. But the fact remains that unless a parent has the resources to bring lawyers, guns and money, they are usually in a position of disadvantage.

So yeah. We'd love it if we didn't feel the need to prepare for a fight before the IEP meeting. We'd also like a pony.

Ultimately, even in a competent district like ours, I don't think my point about the different things we bring to the table is all that problematic. It's a simple statement of the reality of allocating limited resources. We're like dinosaurs, in a way. You've got your meat eaters and you've got your plant eaters, and they're all part of the ecosystem. It's probably not much fun to always be searching for food and killing the crap out of everything; that sounds like a lot of work with not a lot of down time. And it definitely sucks to be constantly on alert, just waiting for some carnivore to jump up and bite your face. But everyone's got their part to play.

Special needs parents are probably herbivores. But we do have T-rex dreams.

April 22, 2013

GUEST POST: The Queen of Monsters

Note: Schuyler and I were talking the other day about how she's going to use her new iPad Mini to express herself. She said she wants to write ("Like you, Daddy-O!"), and I asked her if she wanted to put together a little something for my blog. She said yes.

I helped her spell two words and I helped her clarify one concept that she was having trouble expressing, but otherwise it's exactly as she wrote it. (Before she changed it, she referred to her voice and her brain together as her "word box", which I thought was fascinating.) She even picked (and helped create) the picture.

Now, I'm not sure how to say this next part without sounding like kind of a dick. I'm not posting this for Schuyler because it's sweet, or cute, or precious, or least of all inspirational. If that's what you get from it, then you're missing the point. She's finding her expressive voice. There are some very revealing passages that you're going to miss if you simply think it's cute.

And that would be an incredible shame.

My name is Schuyler Rummel-Hudson and I am a 7th grader in Robinson middle school and I play the drums and the marimba. I like to draw and paint pictures with my friends. I feel happy about talk to my friends with my I-pad mini.

I feel about help others and teachers in my school and everywhere in the world!

I feel different about talk like this and I was born with my voice and my brain.

I feel sad I can't talk like my friends and I feel mad I don't have a voice.

I feel happy using my I-pad mini for the talk with my friends and my teachers and my family.

I going to get great use in the future I grow older. I want to be artist with my mom and I wants to help people are hurt. I wants to write a book about sea monsters and huge and mean monsters with my dad.

I wants people to know me is I love monsters and Greek stories. When I was little girl I feel tiny and alone and now I feel HUGE! I am going to BIG things with my family and my life in the world.

Your author,

Schuyler Rummel- Hudson :)

The Negotiating Season

Today at the 504:
Parents need to understand that their intimate relationship with their kid empowers them with a level of investment that can't be ignored and shouldn't be minimized. It's imperative that parents go in knowing what they need to know, and with a clear and sober understanding of their child's disability and what that might mean realistically. But in my opinion, parents also need to temper that with a philosophical open door. They need to overbelieve. They need to hold onto possibilities, because those possibilities have a funny way of turning into realities.

What We Need From Schuyler

This morning at Support for Special Needs:
Schuyler is a lifelong commitment, but she's also like a warm star at the center of my solar system. When I get lost, I know where that center is. When I get disheartened, I know where to turn to for warmth. The complexity of parenting Schuyler is something I can't even describe; in ways both large and small, the reality of being Schuyler's father changes every day. It's work with no job description; it's building something large and complicated without a blueprint. It's making it up as I go. And yet without that work, I'd be a shadow of the person I am.

April 19, 2013


My weekly lunches with Schuyler will end one day, and probably soon. I know that. I understand that she won't always want this. More to the point, she won't always need it. She'll find success in navigating the Lord of the Flies world of middle school. I'll be thrilled when that happens, even as I feel a certain selfish sadness, too.

One day she won't want this. But not just yet.

I join her for lunch like I do every Friday. Today, it's just the two of us. Schuyler is almost always the first to arrive in the lunch room. Today I stop by her special ed director's office for a moment, so when I walk into the lunch room, Schuyler is already there. She has her iPad out, and I can see she's sending a message. I feel my phone go off, but I don't look at it. I assume that she's asking where I am. Later, however, when I look at her message, it simply says, "Boo!"

I show up bearing Whataburger, and she's happy to eat some bad-for-her junk food instead of the mostly sensible lunches around her. She's happy today. Most days, lunch is when I remotely hear from Schuyler as she sends a short flurry of messages while she eats. I never know if I'm going to get expressions of anxiety over some complicated relationship with a persistent frenemy or an emoji farting monkey.

When I'm at the school for lunch, I can watch it play out in real time. Sometimes I see Schuyler watching someone with wary eyes, and I know something has happened, some interaction that has left Schuyler confused and hurt. Today, a girl with whom I know Schuyler has had frequent conflicts comes up to the table and greets her warmly, perhaps a little excessively so. I feel like I'm probably the intended audience for some of this, but Schuyler takes it at face value and delights in the attention. She is without guile, bordering on naive. But that's Schuyler, to the core. Her innocence scares me, but it's the thing I love about her perhaps most of all.

As we eat, her table fills up with girls she knows. They're not Schuyler's friends, not precisely. Many of them are from the HOPE program; neurotypical students who do things like eat lunch with and mentor kids with special needs. But they've grown close to Schuyler. They enjoy her company and gently tolerate her raucous sense of humor even when she's too much. Schuyler can sometimes be too much. It's another aspect of her personality that I value even when it's complicated.

When I visit Schuyler for lunch, I observe closely. I want a snapshot of what her life is like when she walks alone. I try to be a fly on the wall, which is hard for a 6'2" fat old man at a table full of thirteen year-old girls. Today, somehow, I achieve success. Schuyler has a new object of her eye, a boy with a hipster name, and she's pointing him out to her HOPE friends.

For a few moments, there's no boundaries between the typical and the broken. There's no communication barrier, no social fence, and no confusion. There is only a group of girls talking about the boys they like, and whether or not they'll gather the courage to talk to those boys, and what they think of each others' choices.

For a few minutes, before the societal narrative that so often holds them gently but firmly apart descends on Schuyler and her typical classmates, she's in the world in a way that means the most to her, without a monster and without that other monster, nearly invisible but so, so strong, the monster that walks among the world of the neurotypical and whispers into unimpaired young ears that difference is weakness, a thing to be avoided.

For a brief time, they were just little girls.

And I got to see it. My own monster stood in silent appreciation at the spectacle.

April 16, 2013

After Wooster, Part Two: On Being Human

In a larger sense, I guess perhaps it really is all about tools. In a sense, all the work that everyone associated with disability does becomes a tool. A tool, and a means to an end, that end being a sea change in how our society recognizes basic humanity. That end often feels too big, too much, too far away. It can be a disheartening feeling.

This was mostly the subject of my speech at Wooster. I didn't want to talk so much about specifics of Schuyler's experience with AAC, or what I'd learned as a parent, or to make myself sound like a swell dad or a fancy writer, or to make us all feel good about what we were doing. Schuyler's story is the story of every kid who ever needed help communicating to a larger world, and of every adult those kids become. Most of those in attendance knew Schuyler's story, whether or not they realized it. And I'm just a guy who wrote a book and was granted a platform in the world because I got lucky. I remain lucky, just a dumb dad who knows how to push words around in a way that people will listen to. What matters is what I do with it, I suppose.

I wanted people listening to my speech to understand that Schuyler's disability makes her life more challenging, but her difficulty mostly comes from trying to move through a world that hasn't made a place for her, or for those afflicted as she is, and certainly for those whose own communication is challenging in ways that go far beyond anything Schuyler has ever faced. I wanted people to think about communication, which I feel is the touchstone here, the piece that drives the rest. I wanted people to understand that communication requires that vast toolbox, full of possibilities that often don't even look like tools to our limited vision.

I wanted those who were listening to what I had to say to think about worth. I wanted them to think about what it means to be a human being, and whether or not love can truly exist where value hasn't been recognized and allowed to flourish.

I think the fight for equal rights (and a true shift in how we as a society value the disabled among us) must be expressed in the language of basic human rights. It can't be about entitlements, or how much is appropriate to do for kids with disabilities in school or the adults they become. It absolutely can't be about what we think we can afford.

It must be about what we CAN'T afford, and who we cannot allow ourselves to neglect if we want our humanity to thrive and not wither. It's not just about how we treat the afflicted among us. It's about what we are prepared to demand from ourselves. It's about what we wish to see when we look inward.

What I wanted to accomplish in my speech was big and difficult, and I'm small and flawed. But if I could reach anyone who heard what I was trying to say and recognized their own feelings that things can't remain like this, then it was a start. I would settle for reaching one person, if that person was committed to doing the hard work, the good work. And I believe I may have succeeded, which excites me and makes me hungry for more. Hungry for change, and for a transformation in what we as a society can recognize, within a breathtaking diversity of difference, as human and of real worth.

In my speech, I discussed Jean Vanier's belief that those with disabilities compel us to face two very difficult questions. "Do you consider me human? Do you love me?" In our journey to answer those questions, we reach a point of not just acceptance with those with disabilities but of real integration into the social narrative in a series of evolutionary steps. The first is fear, of the differences and of our own frailty. Next comes pity, which is only slightly better and certainly no more helpful. Most of us move on to a place where we respect persons with disabilities, and some of us move forward to a sincere desire to do the work required to help them.

But there's a final step that we as a society must make. The path to understanding the true humanity of the disabled is to enter into authentic relationships with them, and to reach a state of love through an unfettered grasp of their humanity in all its difference. That piece can be elusive, even to professionals. I'm truly grateful to programs like Best Buddies or the HOPE program at Schuyler's school that partners neurotypical kids with their special needs peers during lunch periods and school activities, but that's not the finish line. There is no finish line, but rather an evolution for us, one that leads to real relationships. Intimate friends, romantic partners, professional colleagues, bitter enemies, whatever. But connections that are real, and which aren't simply real in spite of the disabilities and the differences, but immersed in them. Human neurological and physical diversity as a driving engine of connection.

I quoted Vanier in my speech, but I could have quoted Paddy Chayefsky (through the voice of his character Howard Beale in the movie Network). "All I know is that first you've got to get mad. You've got to say, 'I'm a human being, God damn it! My life has value!'"

Either one works for me.

After Wooster, Part One: Vox humana

There's a great deal I could take away from my visit to the College of Wooster to give a speech last week.

I could share stories about good work being done by extraordinary people, or interesting new technologies and how they are being implemented by educators and therapists and companies like PRC (whose headquarters I visited and who couldn't have been nicer to me). The truth is, I took away more than I could ever explain. Wooster was a transformative experience. I showed up on Monday one person; I left on Wednesday a wholly different one.

But what I really want to talk about is dignity. Self-determination. What it means to be human, and to have value, and to recognize that value. And what it truly means to communicate.

Because this is the work being done. Its not about speech technology, or therapy, or language systems. Not entirely, or even mostly.

In part, it's about tools. After Wooster, I am more convinced than ever that the key to successfully unlocking communication among the nonverbal like Schuyler lies in giving them a toolbox that is bursting with options, many of them self-driven and perhaps hard for most of us to grasp, and then to get out of the way and let them take the lead in how they can most effectively and comfortably make themselves truly heard. That sounds obvious, but in fact it's an idea that frequently gets lost.

Many of us are out there trying to help our kids or our students or clients, and far too often we want so much to give them a magic pill that we ignore how we ourselves communicate, not just through spoken words, but through facial expressions, gestures, miming ("I said I'm walking against the wind! Also, I'm trapped in a box! Come on..."), text messaging, note passing, whatever. We don't think about this toolbox because we're accustomed to having a spoken language default. And I suppose we think in terms of a primary tool when we try to assist our nonverbal charges, to the point that we really only give them one or two big, impressive tools to be used in specific ways, dictated externally by others to somehow enable and allow expression of what's within. God knows I've been a serial offender in this regard. More ways to communicate means more options, and more possibilities. Using one tool does not make you less likely to use another. ("If he uses AAC/sign language/whatever, he won't be compelled to develop verbal speech.") It's a popular misconception, and it simply doesn't work that way.

The reality of communication defies the magic pill. Lindsey Cargill, speech language pathologist at the Helping Hands Center for Special Needs (and tireless advocate), points to a 1976 study by Mele Koneya and Alton Barber. It shows that a person's message is comprised of 55% body language and 38% facial expression and intonation. That leaves just 7% for the actual words themselves. Another study from 2009 shows that gestures are processed in the same part of the brain as spoken language, illustrating that gestures themselves are linguistic in nature. A third study found that kids with autism who gesture are judged socially to be more communicatively competent than their peers.

The other tools matter. And we need to pay attention to them, and treat them with seriousness when they are hard to read most of all. Depending on a single method of communication, one that we deem to be somehow appropriate or ideal, ignores the reality of how we communicate.

It can be complicated, too. In a way, Schuyler is the perfect illustration of how those tools really do matter. Her reluctance to use her AAC has grown over the past few years, in large part I believe because in everyday social situations, she brings all her tools to play. Facial expressions, gestures (oh, the gestures) and her intonation have been doing the heavy lifting for a while now. She's reached a critical point where she needs to seriously refocus on AAC to give her the ability to independently express herself more comprehensively and creatively.

How did that happen? How did a kid as deeply invested in assistive speech technology reach a point where she needs to recommit her efforts (and more to the point, the efforts of her team) to robustly utilize her speech technology? I believe it's because she has embraced the temptation to "pass" as much as she can as neurotypical, as most of the time, she's succeeded. I never want her to feel like she needs to pass, to hide who she is, but she's a thirteen year-old girl in the world of middle school. The pressure to fit in is enormous.

For Schuyler, and for a lot of nonverbal young people, there's a contradiction to be sorted out. She wants to be like everyone else, but at her age, communication has become central to that for her peers. Thirteen year-old girls talk, a lot. And it's a very specific kind of talk. It's constant, and seemingly random but loaded with subtext. For Schuyler to be a part of her peer group, she's going to have to find a way to truly join that conversation, and that is probably going to mean embracing her speech technology in a way that she's reluctant to right now.

The tool sets her apart. The tool gives her a kind of comprehensive language that she otherwise lacks, but it does so at a different pace, and in a way that is inherently unnatural. Our challenge in the coming months is to refocus her, yes. But it is also going to be to reconvince her. That's going to take some work.

Which is fine. I think it's going to be okay. I believe in Schuyler, as always, and in the possibilities. I've become a big believer in her future, and in my own. Our whole world seems transformative now. It's a compelling feeling.

April 15, 2013

The Trophy

Today, at Support for Special Needs:

Like their missing friend, every player on that field earns that trophy. For the members of these teams, there's no such thing as "just showing up".

April 11, 2013

On Inspiration

My latest post at the 504:
I think that any growth on my part must be because of Schuyler, because of her own giant trusting heart and her fierce, unconditional love for me, a love that I am desperate not to win, because I have it already and always have, but rather to deserve. Schuyler gets up every day and she moves into the universe like a storm front, and her success or her failure on any given day is almost beside the point. She perseveres because it's what she has to do to be in the world. And so I try to put myself together as a kinder and more humane person. A better person. The father she deserves.
Schuyler and me, at the time of her diagnosis