Community Standards

This morning at Support for Special Needs:

Excerpt: 

Some of the different hats I wear in my life don't always compliment each other very well. Even though I hate the R Word with the zealotry of a late convert, I'm also a writer, and I don't take the cudgel against language without real hesitation. But as a writer, I have to accept that words have actual power, and when we use them, we have responsibility for the outcome. The concept of hate speech results from the acknowledgement that powerful things sometimes need to be checked. I'd prefer that in this particular case, the checks would be self-applied, and that simply basic humanity would lead you to look at a language containing approximately 1,025,110 words and pick one that didn't cause so much pain to a particularly vulnerable population. I'm not for banned language, as a rule. But I recognize that hate speech occupies a very particular place in our culture, and our response to it is especially important.

Mission Control

Today at Support for Special Needs:

Excerpt: 

There's something special needs parents might not tell you, although if you love us, you probably already know. We're exhausted, physically and emotionally, by the hard days, by the times when things fall apart and when our kids reach for the stars and fall to earth with a crash. But the good days, the ones where the successes outnumber the failures and there are more smiles than tears? Those days are exhausting as well. Even the successful days take a toll on us and require us to dig deeper wells than we might always be able to sustain.

A world diminished by what it cannot see

Today at Support for Special Needs:

Excerpt: 

The value of human life isn't defined by the perfection of the human form or how advanced the intellect and its accompanying understanding of a complex world. That's a powerful realization. In a society that places such a high but narrow value on measuring our worth by our productivity, embracing the inherent human value of even the most impaired person is a revelatory act of social defiance, and perhaps a genuine spiritual awakening.

The Inevitable Sorrow of Passing

Today at Support for Special Needs:

Excerpt: 

On a good day, especially when she doesn't have to speak too much, Schuyler passes pretty successfully. There are a few outward signs of her polymicrogyria, but she masks them pretty skillfully. She carries an iPad with her at all times, of course, but these days, that doesn't exactly distinguish her from any other teenager. (Insert curmudgeonly, "get the hell off my lawn" statement here.) Like a lot of kids with intellectual disabilities, she worries about people noticing her difference and judging her for them. For Schuyler, passing is a very deliberate choice. I try to encourage her to embrace her uniqueness, but while I hope passing won't always be her position, for now, as long as it's what she wants, I'll help her any way I can, even as I know where all this leads. This is going to be a tough lesson for her to learn, but it's going to be one she learns herself. It has to be.

Eye of the Storm

This week at Support for Special Needs:

Excerpt: 

This week has provided a short respite, a brief interlude in the eye of the hurricane. We've been doing this now for a long time, officially for almost thirteen years but of course a little longer than that. I've learned a lot in that time, usually the hard way, but there's a lesson I keep coming back to. Hold on to the quiet interludes, the ones that feel carefree even if they're simply pauses.

A Hard, Correct Answer

Today at Support for Special Needs:

Excerpt: 

When we talk about accessibility and inclusion, those aren't just buzzwords. And they're not just about school, either, although that can be hard to remember sometimes. For people like Schuyler, participating in our society can be shut down as soon as they exit the front door. I worry about Schuyler finding employment, but really, there are a lot of steps between here and there for which there aren't any easy answers. Transportation may be the most straightforward, but it's also pretty daunting. It's easy to forget about the simple act of getting from here to there when we're putting together the list of Things To Keep Us Up Late.

Building an Adult

Today at Support for Special Needs:

Excerpt: 

Schuyler is grappling with emotions that are new for her, and with the idea of relationships and a family of her own one day. It's all been so fantastical until now, and her ideas of the kind of person she might be in a relationship with are still very fluid and mostly kept to herself. ("I think I might like girls," she said timidly at one point in the interview. Sorry, grandparents.) Last week, at my aunt's funeral, Schuyler's natural sensitivity and empathy overwhelmed her a little. She wept openly for someone she's essentially never met, because she looked around and saw people she loved crying, and because she was faced with the reality of The End. On the long drive back to Dallas, she asked a lot of questions about death and the people she loved. I could tell she was thinking of her parents in particular and what the world would look like after we're gone. She's catching on that adulthood has some hidden traps, and some deep sorrows.

Uncivil Discource

Today at Support for Special Needs:

Excerpt: 

There are a lot of reasons I'm already disgusted and exhausted by this election season. If you want to understand, spend about twenty minutes on Facebook, or a minute and a half watching one of the debates. But perhaps the most disheartening for me right now is the intersection of politics and that old familiar ugliness, our society's propensity for using our most vulnerable population so cheaply and with so little regard for their basic humanity. I made a promise to never give my silent consent to dehumanizing our loved ones by saying nothing in the moment, and I intend to keep it. But it's sucking the life out of me, and I'm beginning to feel like if this is as good as we are, we deserve one of these embarrassments as our President. We deserve to be represented by our own kind.

An Undiscovered Country

Today at Support for Special Needs:

Excerpt: 

In addition to her natural empathy, Schuyler holds on to some fantastical ideas about her world, a place in which monsters and and magic and mysticism still play a central part in her thinking. She understands the difference between that world and the real one in which she lives, but she still copes with the hard stuff with a touch of disconnect. This week, she'll face one of the hardest things the world has waiting for her. She'll face grief, the kind that represents the natural order of things, but also a level of pain and finality that will undoubtedly challenge her.

Her Own Beautiful Game

Today at Support for Special Needs:

Excerpt: 

I confess, I've worried so much about Schuyler finding her tribe, but in some ways, she's had them around her all along. I think I always envisioned a close group that hung out after school and communicated regularly and folded each other into their daily lives. I realize now that I've been looking at it through neurotypical eyes. Schuyler's tribe was never going to behave like I did with my youthful friends. Their particular obstacles are incredibly complex, and the logistics of something as simple as a trip to the mall to hang out are complicated. In the world of Schuyler's disabled friends, electronic communications and social media have become something of an equalizer, and that's where they navigate much their tricky relationships. They're all finding their way, with tools I never dreamed of at her age. Schuyler's Island of Misfit Toys is part of an archipelago.

Valentine

Today at Support for Special Needs:

Excerpt: 

I know there's a boy or a girl out there (probably a boy, judging from her interests so far, but never say never) who will meet Schuyler and will look past her little monster and her childlike nature, who will see what the people who know her already see. He'll recognize the hard work she'll require, but he will also understand how very, very worth it that work will be. He'll know that he's found a girl who is literally like no other in the world, a person who is unique in ways that transcend the simple individuality of every human. He'll see what a perfect friend she can be, and he'll understand that her gigantic whale of a heart is capable of such love and devotion.

Anything You Want to Be

Today at Support for Special Needs:

Excerpt: 

As I've written before, I'm a big proponent of overbelieving. I've never been hesitant to encourage Schuyler to reach far beyond her expectations. Time and time again, she has responded by exceeding those expectations. Like Santa Claus, the encouragement that "you can do whatever you want in life, be anything you want to be, as long as you're willing to work for it" is a gentle lie told to very young children. It's one that we as parents understand will be shaped and molded as our kids get older. When you're five, it's entirely feasible that you could be a cowgirl or an astronaut one day. When you're a teenager, that conversation become a lot more real world.

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.