November 29, 2013

The Uncertain Season

Schuyler decorated our tree this year. I can remember a time, roughly a week ago, when she was a small child who would have only reached the bottom branches. Two weeks ago, I believe she was a baby and would have been putting the ornaments in her mouth. Schuyler turns fourteen in a few weeks. Just typing that out felt weird, as if I'm lying to you. Well, of course I am. Little girls aren't fourteen. Babies aren't taller than their mothers.

It's been a strange week for Schuyler. She had an MRI a few days ago, but apparently she wiggled too much, despite her best efforts to hold still, so she has another one next week, under sedation. I'm not sure what her doctor is looking for, if anything. He may simply be looking for an updated picture of what's going on in there. So much of Schuyler's world feels uncertain. I guess it's always been that way.

Schuyler has begun taking her anti-seizure meds, starting at 1/6th of her eventual dosage. It's hard to say what effect, if any, they've had on her. In five weeks or so, she'll be on her full dose, and then look out. For now, she takes her brain pills willingly. It's hard to say whether her behavior is slightly more squirrelly than before because of her meds, or if she's just a girl on her Thanksgiving break, enjoying the world around her with a little extra gusto. I suspect the latter.

Schuyler's broken, beautiful brain will adjust and find its groove, and so will she. Schuyler is wildly interesting at this age, in ways that are kind of new. We talk about big things, like her unpredictable brain and how the planets do their thing and why she believes in monsters but not God.

The future feels more opaque than ever. At this time of year, however, that mystery seems to hold less menace and more of something that feels a little like hope.

November 25, 2013

The Brain Pill

Today at Support for Special Needs
I don't know what I was expecting, but Schuyler's brain, by virtue of its remarkable rewired structure, is a huge unknown to us all. And the potential side effects of this med spelled out on the info sheet were daunting; I half expected to see "werewolfism" listed.

November 22, 2013

Storm Warning

We've embarked down another path with Schuyler. It's not a path we were hoping to ever step foot upon, but then, we were perhaps entertaining unreasonably high hopes.

We received a call from the school yesterday morning, letting us know that Schuyler was in the nurse's office, complaining about a bad headache. When I went to pick her up, the nurse filled in some of the details, including the fact that Schuyler was saying and doing things that didn't actually make a lot of sense. Schuyler seemed tired and a little disoriented when I saw her, and after we got home, she remained... not herself. She complained about a headache for a while, localized on the right side. By three o'clock, she was fine, but even as the afternoon and early evening wore on, she was clearly exhausted. She went to bed early without protest.

So, yeah. Schuyler had a seizure at school. The usual indicators were there, laid out like familiar road signs.

This one seemed worse than before, however, and it manifested itself differently. I made a call to her neurologist, and when he heard the details, he asked that she be brought in immediately. His urgency got our attention.

The short version is that this new manifestation of Schuyler's seizures convinced her doctor that it was time to put Schuyler on seizure medications. Before, he didn't believe that they were serious enough to justify the issues that come with these meds, which are not usually very gentle on the brain. But now, he's concerned that stronger seizures could cause her brain, in its malformed state, to become "kindle" for the harder grand mal seizures that everyone is deeply committed to avoiding if at all possible.

One of the reasons I like this neurologist is that when he talks ABOUT Schuyler, he talks TO Schuyler. He asks her questions directly, only turning to me when she's having trouble expressing herself, and when he's got hard stuff to say, he doesn't sugarcoat it for her. The conversation, some of it dark, about what could happen if her seizures progress, and about what these meds could do to her, was had with Schuyler first and foremost. I like that. She deserves that.

As we talked on the way home, Schuyler suddenly made the connection between the bad and potentially dangerous grand mal seizures we're all trying to ward off and the heartbreaking seizure she witnessed this summer when one of her friends in Miracle League soccer was suddenly stricken in the middle of the field and had to be taken away, still unconscious, in an ambulance. This thought scared the shit out of her, and I don't remember the last time I saw that kind of fear in her eyes, or watched her cry like that. It was hard to watch, but at the same time, she deserved the truth, and the opportunity to take some level of ownership over this thing. She's scared, but she's taking it seriously, in a way that perhaps she hadn't before.

Meds will be good for her. Now that her seizures have reached this level, her brain will benefit from a little control, and will be able to heal and develop without having to fight so much. The risk/benefit balance has shifted, as we always suspected it would.

As we talked it all out in the car on the way home, Schuyler tried to put herself back together. I knew she was looking for answers to questions that she didn't even know how to ask. Big, scary boo questions.

"Look at me, Schuyler," I said. "Everything is going to be okay. I'm not going to let anything bad happen to you. I promise."

Well, I realize I shouldn't have promised her any such thing. Of course I know that. But I've made much bigger mistakes in than making such a promise to her. And I truly meant it in the moment. Hours later, after much contemplation, I still do.

November 18, 2013

Her World, Her Words

Today at Support for Special Needs:
But Schuyler also does a lot of free writing, creating text files on her iPad both for homework assignments and just her thoughts as they come to her. And it's here where the results of her increased freedom of expression and communication suddenly become clear. 
It's not perfect; her grammar is touch and go at best, but even then, when she fumbles the language, she doesn't mangle it so much as twist it into something different. Her language can be broken, but also beautiful and free. A little like Schuyler, come to think of it.

November 11, 2013

A Little Space

This morning, over at Support for Special Needs:
If Schuyler feels comfortable with even a few people in a gathering, she's a social butterfly, and an explosion of personality. But it's different when she's on her own, with no supports and no comfortable narrative to follow. For Schuyler, with communication being as fragile as it is for her, her social anxieties can feed on her in ways I probably can't imagine. She's not on the autism spectrum, nor am I to my knowledge, but in those settings, surrounded by people she doesn't really know but who come at her with a startling familiarity, a kind of sensory overload shuts her down.

November 4, 2013

What Inclusion Isn't

Today at Support for Special Needs:
Denying our kids the ability to work hard and perhaps even fail from time to time, instead just displaying them in front of an approving crowd and announcing "Look at this inclusive philosophy we've embraced!", that isn't inclusion. That's simply building a Potemkin village for the world to see and admire. It's a facade. It doesn't fool Schuyler, or any other kid whose potential is wasted because of fear of failure and a desire to do the nice thing, which is so easily confused with the right thing.

October 28, 2013

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.

October 21, 2013

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.

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.