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."

"Euthanize."

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

Carousel

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

Radioactive

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

Conversations

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.