At the Center of her Own Narrative

Today at Support for Special Needs:

Putting Schuyler at the center of her own story isn't just polite. It's appropriate, and it's essential. She's thirteen now, and while I've certainly spoken on her behalf, or at least facilitated her communication, when she was younger, she's reaching an age where she will continue to advocate for herself more and more. I still speak for her far more often than I should, but sometimes I catch myself. Even as we endeavor to increase Schuyler's communication skills, we're working to provide her with the tools to express herself more comprehensively and training her to use those tools more efficiently and quickly. The goal is to enable her to hold her own, in any social or academic or even professional environment.

Monster Love

Today at Support for Special Needs:

I'm sure there are a great many reasons that Schuyler loves monsters so steadfastly. Monsters are outcasts, but they aren't powerless, even when they lose. Monsters are different, in ways that are usually instantly clear. Monsters make great friends, especially if the world feels overwhelming, or unfriendly, or even dangerous. Monsters sometimes want more than to eat your city. Sometimes they want love, or at least a place in the world all their own. All of the above, and probably more. I don't think Schuyler could even tell you why she loves them so much.

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.

Pause

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.

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?

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.

Complacency

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.

Balances

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.

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.

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?"

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.

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.

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."

"Euthanize."

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.

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?

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.

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.

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.

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."

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