Schuyler and the Big Questions

Today at Support for Special Needs:

Excerpt: 

When speaking to groups where I know there are going to be a lot of people of faith present, I still talk about God. I talk about Faith and God and my own broken spirituality and what kids like Schuyler may be able to teach us about such things. I kick open the door to a conversation that isn't about convincing anyone or being convinced, either, but rather an exploration of perspectives that might just bring us all a little closer together. I'm not religious, and I'm certainly no Christian, but I don't need to be snotty about it and assume that believers won't listen to me or treat me with respect. I like those conversations. I try to draw them out with my speeches when it's appropriate.

Letter of the Law

Today at Support for Special Needs:

Excerpt: 

Dignity isn't a treat for the fortunate. It's a basic human right, one that you get to put in your pocket the day you're born. It's not something you're granted by the world. It can't be given to you; it can only be taken away.

Dragons Transformed

Today at Support for Special Needs:

Excerpt: 

Sometimes I don't have words for the things that keep me up at night, the things that keep so many special needs parents awake, staring at the ceiling. Institutions that don't adequately value the amazing human beings they've been entrusted with. Voices from the outside tearing us down, in the guise of civic concern or advocacy or just plain ugliness. And most of all that wordless thing waiting in the future, the one that scares us most of all because we can't see it, we can't even imagine it, and when we ponder it, we are reminded of our own aging frailties and a clock that feels like it's running out far, far too fast. I don't always know what to say about these lurking phantoms and monsters. I'm struggling with them myself.

F Word

Today at Support for Special Needs:

Excerpt:

For Schuyler, I don't think it's being different that bothers her. She'll proudly tell anyone who asks what church she goes to, for example, that she is a theist, which means she believes in God but not religion. In this town, that's a bold statement. But the difference of disability still rankles her. She can hear a thousand times that being different isn't a bad thing, and I'm pretty sure she even believes it, up to a point. But only just to that point, somewhere shy of emotional truth.

Families Don't

This week at Support for Special Needs:

Excerpt: 

When we talk about a disability community, what I think we're really describing is a family of sorts. Much like family, very few of us actually chose this community as our own. We'd much rather be a part of the Easy Living On A Beach Somewhere Community, but this is the one we were handed, and we're mostly stronger for it. The beach still sounds nice, but whatever. Those families are soft.

The Separation Box

This week at Support for Special Needs:

Excerpt: 

This past week was IEP Week, which makes it sound a lot more fun than it is. (It can sometimes feel a little like Shark Week, probably for the wrong reasons.) Our experiences as special needs parents are incredibly varied and diverse, but it feels like for those of us with kids in public schools, the IEP is a universal hurdle. Sometimes it's a success story, but it's hardly ever an easy one. Many of us believe that in a perfect world, every public school student would have an Individualized Education Program. That's mostly because every student learns differently and would benefit greatly from such a focused and customized approach to their education. But there's this teeny tiny part of us that also just wants to share the fun with everyone. Misery loves company; anxiety does, too.

Dirty Bird

Today at Support for Special Needs:

Excerpt: 

I won't pretend that helping Schuyler program her device to sound like a George Carlin routine wasn't fun. But as I have been so many times of late, I was proud of Schuyler for taking another step in her journey towards independence and self-actualization. She understands, like any kid her age should, that saying those words in the wrong circumstances will result in a quick path to repercussions. The trick for her is going to be discovering the boundaries that she can push. If Schuyler is to truly own her prosthetic language as being truly her own, it's got to be without restriction. Helping her to take agency over her language possibilities doesn't make me a good father, any more than helping to give her the tools to drop an F bomb in class makes me a bad one.

The Technological Why

Today at Support for Special Needs:

Excerpt: 

I have a confession to make, one that on the surface would seem a little awkward, given the public position I've taken on the subject. Sometimes I'm baffled by technology. There, I said it. I mean, I'm not at that "old man standing on the porch in shorts and black socks, shaking my fists at the newfangled world" level of befuddlement. In fact, I don't feel threatened by technology at all, which I suppose is something. By and large, I live a life driven by technology to a certain extent, so I'm getting by okay. But there are embarrassing gaps. I never establish Bluetooth connections on the first try, for example. And I'm glad the Age of the Fax is over, because I was almost entirely incapable of sending one successfully. That was a rough few years.

In Defense of Monsters

Today at Support for Special Needs, with a lot of input from Schuyler:

Excerpt: 

Schuyler doesn't hate monsters. She loves them, because she understands them. Monsters are misunderstood. We think monsters are scary because they're different, and she's learned the hard way that the world doesn't like different. And I've always recognized that Schuyler's view of monsters makes for a perfect metaphor for her disability. I use it because it's brilliant. I don't mind allowing the world to give me credit for this metaphor because I'm selfish that way, but like most of my views on disability and how it affects my daughter and the people around her, Schuyler is my teacher. She has been from the beginning.

Art by Laura Sako

A Complicated Girl

This week at Support for Special Needs:

Excerpt: 

Schuyler's evening was complicated. That much I can say. It was complicated for all the reasons that are obvious, and for all the ones you never think about. It was complicated because she looks like any other fifteen-year-old girl dressed to the nines at a high school dance, and it's complicated because she's not like any other girl there, or most places. It's complicated for the things she understands about her peer relationships, and it's complicated for the nuances that escape her. Her feelings about boys are complicated, and her inability to adequately express or process those feelings are also very, very complicated.

Co-presenter

Today at Support for Special Needs:

Excerpt: 

Schuyler is growing into an advocate for her own needs and wants, although it's not always easy for her. She gets nervous. She doubts the value of what she has to say sometimes. But at the same time, she sees how much people want to hear her perspective, and she is beginning to get a sense of what her future as an advocate might look like. She's taking the first steps into a life where the person who speaks up for Schuyler is Schuyler.

July 2008. I'd like to have that hair back, please.

Impossible Things

Today at Support for Special Needs:

Excerpt: 

Doctors and teachers and therapists, they can be a great many things, but they're generally not very skilled prognosticators. To be fair, I don't think very many of them actually claim to be able to tell the future, and I imagine most of them don't even want to try. As parents of kids with disabilities, we ask them to. We demand that they try. Our world and that of our children is already far too full of uncertainty. As a result, we ask for information that our kids' caretakers and educators can't possibly possess. So I recognize that we really do sort of have it coming.  

But God help me, I do so love it when they're wrong.

No Easy Answers

Today at Support for Special Needs:

Excerpt: 

It's that time of year again, the beginning of the spring semester, when all the least fun parts of Schuyler's public school experience begin to rise up out of the swamp and demand attention. Soon we'll start worrying about the STAAR test, Texas's state-mandated standardized testing. It's the Godzilla monster that stomps through our little Tokyo ever year. We also begin preparations for Schuyler's next IEP meeting, and the future that it portends. (SPOILER: More monsters, pretty much forever.)

A World of Fairness

This week at Support for Special Needs:

Excerpt: 

I'd like to suggest a new attitude as we begin a new year. There's a lot of concern out there about fairness and balance and making sure no one gets anything they're not entitled to. I think we've got that covered. Perhaps it's time for a little imbalance. Maybe, just maybe, the world won't spin off its axis if we worry just a little more about those families for whom the idea of fairness has always been something of a cruel joke. Not charity, but just a little empathy. Perhaps a pinch more humanity than we've been accustomed to tossing into the mix.

Theories of Everything

This week at Support for Special Needs:

Excerpt: 

The film by and large gives a respectful and accurate look at how technology can make a real difference in the lives of people with disabilities. Speech tech gave Stephen Hawking the ability to communicate his powerful vision of time and space and the origins of our universe, and in doing so made the world a far richer and better place. Not just for one man or his family, but for the entirety of human civilization. That's not too bad.

Happy New Year to everyone who takes the time to read my stuff. Here's to the future!

Christmas 2015

This week, at Support for Special Needs:

Excerpt: 

Nobody I know loves Christmas as much as Schuyler. This might seem surprising, given her own oft-expressed atheism. (Believers who are worried about her soul's peril might be slightly relieved to hear that she recently expressed some wiggle room on the question of the existence of God.) But Schuyler loves the music of the season, and the gift-giving (and the gift-getting, because she's no fool), and the general positivity of the season. Schuyler Noelle, who has as much reason to believe otherwise as anyone, has a seemingly bottomless faith in the goodness of people. She's better at being a human than just about anyone I know.

To Schuyler, at Fifteen

It's funny, I've always written with the idea that one day, Schuyler would be old enough to understand the things I've expressed. It was a driving force behind my book, the thought that one day, she'd be able to read those pages and see what we experienced in her earliest days, and how flawed I was but how very much I loved her, even when I made mistakes. The same has gone for the online writing I've done over the years.

But now, as she turns fifteen, suddenly I'm writing less for the Schuyler of the future and more for the Schuyler who exists now. She's a young woman now, taller than her mother, passing all her classes in her first semester of high school, old enough to watch television and movies that don't make me want to self-injure. Schuyler has even been reading Schuyler's Monster in her iPad. (Her review? "It's pretty good." I'll take that.)

So this is for you, Schuyler. I remember the day you were born like it was yesterday. I remember your squishy little face and how it would turn bright red when you cried, like a tomato. The years between that cold Michigan day in 1999 and today have passed more quickly than seems possible. And yet, I can barely remember what the world was like before you were born. When I think back to the big events of my life, going all the way back to when I was a teenager myself, I imagine seeing you there watching. I feel now like you were always there, even when you were just waiting to be born.

The thing I need you to know today is that this is my favorite day of the year. I love your birthday more than Christmas and certainly more than my own birthday. On your birthday, I get to celebrate the day when your life began, but really, it was the day when mine started for real, too.

Thank you for making me the happiest and luckiest of fathers.

Some Thoughts on a Very Very Very Bad Idea

This week at Support for Special Needs:

Excerpt: 

When news stories come out detailing the mistreatment of special needs kids, I tend to think that the best thing we can do is shine a light on them, to try to force change through awareness. I'm not always sure that actually works, though; when you turn on the lights, the roaches scatter and run under the fridge, but they don't actually go away. Maybe I'm just helping give the roaches a little exercise.

A Scene, and a Revelation

Today at Support for Special Needs:

Excerpt: 

Schuyler's percussion teacher doesn't sign, but rather reads lips. That's not much help with Schuyler, whose lips aren't doing a lot of heavy lifting when she speaks. And so a big part of what Schuyler is likely to get from her private percussion lessons has little to do with drumming and everything to do with communication and information exchange.

Then and Now

Today at Support for Special Needs:

Excerpt: 

When I think back to my high school years, there's a significant difference between then and now. It's a difference that matters, and one that I suspect most people my age might appreciate. When I was in high school, I knew a few people with physical disabilities, but absolutely none with developmental disabilities like Schuyler's. To this day, I have no idea where they were even educated. I'm not going to suggest they were hidden away in some evil dungeon somewhere, eating bugs in the dark or whatever. For all I know, they were receiving a fine education, but they were elsewhere. And my own development as a human being suffered as a result.