June 30, 2014

"Thanks, but..."

Today at Support for Special Needs:
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:
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.
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.
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.

June 9, 2014


Today at Support for Special Needs:
I don't think there's anything wrong with letting your kid dream past their disability. If it involves a small lie, I think it's not much different from the Santa story (SPOILER...) or the "anyone can be president" fib. (Watch Fox News for a few minutes, until your eyes begin to bleed, to see how the exception probably illustrates the rule.) Our kids are learning a great deal during their early years. That learning process involves more than finding alternate paths through the world. Kids like Schuyler are figuring out who they are, and how their disability can shape them even as they reject the idea that it should define who they are.

June 2, 2014

A Simpler Season

Today, at Support for Special Needs:
Many of us with special needs kids make noises of outward exasperation at the onset of summer, and we mean it, too. But at the same time, when pressed, I suspect many would admit that we're relieved, too. The schools will be giving us back our kids. Whether those schools have gotten it mostly right or mostly wrong, when we get our kids back for the summer, we leave a great deal behind. We're done, for the time being, with all the complications of negotiating school policy and modified curriculum and imperfect behavioral plans and all the modification required to make our beloved square pegs fit into those educational round holes.