Viva Schuyler

Today at Support for Special Needs:

Excerpt: 

This weekend was a big risk. One week after her sixteenth birthday party and the bumps in the road she suffered there, we took Schuyler to Las Vegas to attend a surprise fiftieth birthday party for one of my best friends (and Schuyler's godfather). Last weekend, she was undone by a gathering of her school friends that she basically sees every day, over pizza and games. We followed that up with a trip to Las Vegas, a place that is the very physical manifestation of the concept of overstimulation. It's safe to say that we were concerned.

The Price of Happiness

Today at Support for Special Needs:

Excerpt: 

I learn from Schuyler and her gigantic good heart. She teaches me every day, and mostly the thing she tries to impart to me me is simply to lighten up a little. It's a hard lesson for me; at times, I feel like my fatherly life's narrative has been written in worry. But it's the one lesson she never gets tired of giving to me.

The Three Anxieties and the Lucky Brain

Today at Support for Special Needs:

Excerpt: 

Aside from the obvious, Schuyler has always had something of a lucky brain. It's pretty seriously affected by her polymicrogyria, but you'd never know it from seeing her. Schuyler's brain is working in ways that are a mystery to everyone, even her doctors. Areas that should be deeply impaired are functioning at high levels. Just being ambulatory is something of a miracle for Schuyler, and she is so much more than just ambulatory. Her enigmatic brain isn't simply doing more than it should. It's doing most of what it should. I hate Schuyler's monster, but God, do I love her brain.

Just possible

Today at Support for Special Needs:

Excerpt: 

We were in line at the grocery store (the place where all these kinds of stories seem to take place). When we reached the front, we saw our cashier, a nice, smiling young woman who had a lightweight, active-type model wheelchair parked behind her register. She and Julie chatted as we checked out, and she watched Schuyler very closely as we interacted. (I believe I was being my usual mature self.) We're accustomed to Schuyler being watched; there's a kind of "Uh oh, what's going on here?" moment with people when they realize that things are not quite what they appear with my daughter. But this time, there was no trepidation in her look, only friendly curiosity.

A new year, a new opportunity

This week at Support for Special Needs:

Excerpt:

In 2016, we're not just going to be choosing a president. We're going to be establishing a new social narrative, or at the very least engaging in a more vigorous discussion than we've had in a very long time. If we can focus on our commonalities, if we can present a voice that isn't necessarily unified (because I know better than to think that is likely to happen), but at least harmonized, this year could present a real opportunity to create a national conversation about disability rights and our broken social model, a dialogue that effectively addresses the needs of disabled persons. This could be the year that society responds to the needs of this community reasonably and empathetically, rather than with "oh, god, not these people again".

The Season of Beauty Found

Today at Support for Special Needs:

Excerpt: 

It's only a few days before Christmas, and even though I'm a dirty heathen, I find myself compelled to reach out to my fellow special needs parents. I understand that it's not necessary an easy or particularly merry time for many of you. I know that in some ways, this might be the very hardest part of the year. There's not much in the world with as much power to isolate us as a seemingly constant reminder that the standard holiday narrative is not our own. Happy and understanding families, smiling untroubled kids, a world filled with peace and love and acceptance, all of these can feel far away to us. The Norman Rockwell scenario fed to us by popular media can sometimes feel like it's winking at us and saying out of the corner of its mouth, "Ah, yes, but not for you."

Happy holidays to you all!

Small World

Today at Support for Special Needs:

Excerpt: 

When we can't pass and disappear into the world of the typical, the internet communities we build help us to feel as if in this smaller, more self-selecting world we've assembled, we're part of a neighborhood, and when someone is in trouble, it can sometimes seem like that family lives just down the street, and we were informed by a neighbor walking by. It is, as I said, a fiction, but it's one of the more valuable ones we have.

A Simple Season

Today at Support for Special Needs:

Excerpt: 

The world isn't an easy place for kids like Schuyler, but at times like the holidays, it can perhaps be a little more straightforward. I think one reason Schuyler adores this season so much is that for at least a little while, the rules become a little more clear, and a little more fair. It doesn't matter so much if disability makes things harder, because during the season of peace, the people around her perhaps try a little harder to be kind and inclusive. The world in which she lives, one that fascinates her even as it sometimes disappoints, it makes a little more sense at this time of year. And if I'm paying attention, her straightforward love for that grand, rough world begins to make a little more sense to me, too.

The Politics of the Low Road

Today at Support for Special Needs:

Excerpt: 

You don't have to be Donald Trump to take a spin on that low road, either. You can be the President of the United States or the Mayor of Chicago, and all your good works on behalf of the disability community can be tarnished by a careless moment or an entrenched vocabulary that is unable to surmount your pride or your bad habits. You can be an educator enjoying the sanctum sanctorum of the teachers' lounge as a safe place to express your frustration. You can be a teenager who might even know better but is afraid to step out of the immature culture of your peers. For that matter, you can be an author and parent advocate who only finds his better humanity very late in the game, destined to spend the rest of his life striving to do penance for years of insensitivity.

The Softness of Island Living

Today at Support for Special Needs:

Excerpt: 

Things are different now. I wouldn't describe her current academic setting as inclusive, despite our very clearly expressed desire for such an environment for her. Significantly, I feel pretty confident that if you asked Schuyler for her preference, she would pick her present situation. She's more comfortable on the Island of Misfit Toys. You can keep your Lord of the Flies island, thank you very much.

Real Monsters

Today at Support for Special Needs:

Excerpt: 

Schuyler doesn't understand what's going on in any comprehensive way. I don't know how to explain ISIS or Syria or refugees, and certainly not religious extremism or American jingoism. I tried to explain the Paris tragedy to her as best as I could, but honestly, I'm not sure I understood it all that well myself. I still remember the world before it lost its mind. I don't really have the intelligence or the stomach to make sense of it to Schuyler now.

Monster Swag

Today at Support for Special Needs:

Excerpt: 

It can be a little frustrating, having to explain polymicrogyria. Other disorders with a great many patients receive a great deal of public awareness, as well they should, but it can feel like the oxygen in the room is very limited as a result. People ask a lot of questions based on their observations of Schuyler. Is she deaf? Does she have autism? Sometimes I go into the whole thing; other times, I just say she has a rare brain malformation and leave it at that. Sometimes I feel like being a teacher. Sometimes I'm just tired.

Another homecoming, of sorts

Today at Support for Special Needs:

Excerpt: 

It's no secret that letting go of Schuyler's chaotic, sometimes troubled but always adventurous childhood has been difficult, mostly because what lies ahead is so mysterious, and where special needs parenting is concerned, mysterious is never comforting. Every time she picks up a piece of her own advocacy, Schuyler puts down just a bit more of a deposit on the future. On her future.

Her Own Worst Enemy

Today at Support for Special Needs:

Excerpt: 

My little girl has had a lot to overcome in her life, and a lot of antagonists to face. Much of the time, however, her most daunting foe is herself. Her insecurity, her fear, her frustration, her occasional laziness, and her misunderstanding that if she plays her cards right, the world will feel bad for her and smooth the way.

Solitary Grace

Today at Support for Special Needs:

Excerpt: 

Adversity builds special talents, or so we've always been told. That might be bullshit, a way to feel better about the things that hold us back beyond just "Wow, that really sucks, sorry." But it feels true enough, I guess. I'm not sure if it's a scientifically measurable phenomenon, but those of us with special needs children watch them as they work to overcome obstacles, and we hope that their other senses and capabilities step up to fill the gaps. We hope for the same within ourselves, too.

In with the New

Today at Support for Special Needs:

Excerpt: 

What will they see in this person, your beloved little weirdo who doesn't fit in anywhere? Will they have observed the things that set our kids apart already, or will they still be trying to fit them into preconceived spaces? Will they see your kid as a burden, or a challenge, or will they see the person you see, with flaws that certainly aren't invisible but which perhaps don't manifest in obvious ways? Will these new teachers be hesitant? Enthusiastic? Will they even know where to begin?

Disability Employment: A Topic Worthy of Awareness

Today at Support for Special Needs:

Excerpt: 

As a parent of a daughter for whom all this will depart the realm of the theoretical, I confess that the best part of this isn't the information that's available, although that's nice. For me, it's a great comfort just to hear someone else, particularly government agencies, say "Yeah, this is a big deal. Let's look at this and see what can be done." 

That's not a small thing, not at all.

Wonder On Loan

Today at Support for Special Needs:

Excerpt:

Last night, like everyone else lucky enough to have clear skies, we watched the rare display of a supermoon and a full lunar eclipse at the same time. As far as excitement goes, it fell short of, say, a lightsaber duel or an airplane race, and yet she loved it. She theorized that if she became a werewolf, her newly dyed hair would mean that she would be a blonde werewolf. As the moon disappeared and then shifted red, she watched with amazement. This was an unexpected experience, and those aren't always a good thing for kids like Schuyler. But to her, it was another gift from the universe. If I perceive that universe as sometimes cruel and sharp, Schuyler simply recognizes it as a fount of surprise and wonder.

The League of Ordinary Gentlemen

Today at Support for Special Needs:

Excerpt:

If you're a father and you're not committed to being an active, involved, pain-in-the-ass level participant in your special needs child's advocacy, I guess you're the one I want to reach the most. It's not that you're making it harder for the rest of us, because that's small potatoes to us. I've spent the last twelve years wondering if my daughter was going to die from seizures. I've spent that same amount of time trying desperately to keep her schools on track and to lay down bridges for her so she can cross the cracks that she could so easily fall through. The lazy societal expectation that's I'm not going to give a damn or get involved in Schuyler's care? That's not a scary junkyard dog. That's a chihuahua.

The Myth of Safe Places

Today at Support for Special Needs:

Excerpt: 

In the end, Hun-Joon Lee was devoured by an unsafe world. He was destroyed not by his disability, but by the monsters that we as a society have created, or at least allowed to roam free. He sat, unmissed, in a school bus on a hot day, and he paid the price for our complacence. Despite the sorrow of his family and the agonized guilt of those who failed him, and also despite the paragraphs I'm spilling out here in a failed attempt to wrap my brain around this, in the end, there's really not a goddamn thing to say.