July 21, 2014

Eleven Years

Today at Support for Special Needs:
Excerpt: 
Mostly, though, the last eleven years have given me Schuyler. They've allowed me the time to let go of my selfish expectations of who I thought my daughter was going to be, and they've allowed me to adapt and appreciate and unconditionally love the weird and wonderful girl she is. It's the girl she is despite her condition, and because of it. And I'm the father I am because of the many mistakes I've made and the occasional things I've gotten right. None of us in this family are the people we were then. The past eleven years have been a crucible and a wonder. We all bear scars and the remnants of war paint, and we all shine a little brighter when called upon to do so.

July 14, 2014

Schuyler's Sense of Self

Today at Support for Special Needs:
Excerpt: 
It really is a beautiful photo, haunting and sweet. In most of her pics, Schuyler is laughing, and not gently, either. But as she gets older and more secure in her sense of self, and as she continues to construct and deconstruct her personal sense of who she is, the Schuyler she wants the world to know is more nuanced. She's growing up, and she knows it. I think it's beginning to excite her, the knowledge that she's in control of the person she is to become.

July 7, 2014

Independence Days

Today at Support for Special Needs:
Excerpt: 
Watching Schuyler and her friend navigate their shared space was an eye-opening experience for me. I observed the ways in which they connected, and watched them dance around the ways that they simply couldn't connect. It gave me a sense of what a friendship with a neurotypical kid might look like, as well as why it has been so hard for Schuyler to make those friendships work out for long. I don't always have a very good concept of how far Schuyler really is from the developmental norm of kids her age. It's not something of which I should be so ignorant.

June 30, 2014

"Thanks, but..."

Today at Support for Special Needs:
Excerpt: 
Special education is a funny thing. (Not so much “ha ha” funny, more like “Huh, that doesn’t make a lick of sense” funny. Not actually all that funny at all, sorry.) We believe deeply in early intervention and a robust special education system in place from the very beginning, but there’s little agreement on what success actually looks like. And to those of us who live in the world of special education, there are few things that make us at best roll our eyes and at worst lay awake at night than hearing even the most well-intentioned policy-makers and elected officials talk about how they’re going to fix special education.

June 23, 2014

The Gatekeepers of Entitlement

Today at Support for Special Needs:
Excerpt: 
We are so convinced that we have a right to know and understand every single scenario that we see. We are offended by nuance, and confused by invisible impairment. We are the gatekeepers of entitlement (a word that is itself loaded with judgment), and if there's one thing we cannot stand, it's the idea that someone with a disadvantage somewhere is getting something that we don't think they deserve.

June 17, 2014

"Once more, unto the breach..."

Today (a day late, sorry) at Support for Special Needs.
Excerpt: 
We've always advocated strongly for Schuyler to be educated in an inclusive public school environment, even moving to our current city to make sure she'd be able to integrate using assistive technology to bridge the communication gap between her and the typical world. I have to be honest and say that her current school situation is a poor reflection of that goal. There are a lot of reasons for that. It's a complicated situation, which is usually a pretty accurate way to describe the lives of special needs families. There are goals, and there is reality, and if you're lucky they might look a little bit similar. If you're very, very lucky.

June 14, 2014

Unseen Giants

I wrote a Father's Day piece for my friends over at BridgingApps. They're great people and I'm honored that they're featuring my words.

Happy Father's Day to all my fellow dads of the world. I hope you get a nice tie.
Excerpt: 
If you asked me that oft-repeated but generally useless question, whether or not I'd take my daughter's disability away from her if i could, I won't lie to you. My answer now, as always, would be yes, without hesitation.

Should we want to take away our child's disabling condition? It's a hotly contested question, but it misses the point. The thing we come to learn as special needs fathers is that it doesn't actually matter how we answer. No one is ever going to ask that question as the prelude to a miracle.

We can't fix, but we can see. We can look and really see our kids, and come to understand that their disabilities are a part of their construction, threads that run deep and true in their tapestry. We become caregivers, and we become champions. We learn to fight and we learn to nurture, in ways that the fathers of typical kids might never have to do. We don't allow ourselves to become Homer Simpson because our worlds won't work with that character.