An Extraordinary Story

Today at Support for Special Needs:

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In the list of commemorative awareness months, October's got a lot going on. It's Down Syndrome Awareness Month, after all, as well as National Dyslexia Awareness Month, National Breast Cancer Awareness Month, National ADHD Awareness Month, National Domestic Violence Awareness Month, Spina Bifida Awareness Month, and National Disability Employment Awareness Month. October kind of feels like Awareness Awareness Month, to be honest. Relevant to my own life and my own personal perspective, along with all those worthy causes, October is also AAC Awareness Month.

Two Simple Experiences

Today at Support for Special Needs:

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Now that Schuyler is up to her eyeballs in high school life, marching band has become something of a sink-or-swim experience for her. This has resulted in a few stumbles, such as when she took the field at last week's football game with big floppy shoes that were not just untied but actually unlaced because she couldn't do it and, for whatever reason, she couldn't find anyone to help her while the band was getting into their uniforms. The new independent model of Schuyler 2.0 has some bugs to work out of the system, but she's getting there.

Lily Pads

Today at Support for Special Needs:

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Today, I have a brief message specifically for the parents of kids with special needs. It's a message that parents of typical kids probably need to hear, too, but I kind of feel like they've got supports in place, strong ones with foundations rooted deep within our social structure. Of late, I've been watching as one special needs parent after another falters, and I've seen how tenuous their supports really can be. Their supports; OUR supports. I suppose my message to them is a message to myself as well.

The Key

Today at Support for Special Needs:

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Schuyler's voice is no longer a thing to squeak out of her iPad in close proximity. It's a thing that can travel beyond her immediate space. In some ways, Schuyler has found a way, though the simple act of handing a speaker over to a listener or placing outside of her own immediate personal space, to improve upon the natural human voice that she has been denied. And in handing that voice over to another, she creates a strange kind of intimacy, better than a shout. In a loud room, Schuyler can put her voice in your ear. I can't do that, and I find myself ever so slightly envious.

The Other Talk

Today at Support for Special Needs:

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Typical parents fear The Sex Talk. (To be fair, so do we.) Many special needs parents have The Other Talk, too. We don't discuss the topic with others very much, but be assured that we think about it. When we approach the topic with our kids, we do so gently, because in even the most tragic circumstances, Death shouldn't eclipse Life, and the days we get with our kids shouldn't be entirely stained by our anxiety for the days we lose.

On Labor Day, 2014

Today, at Support for Special Needs:

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I'm not usually one for writing contrived holiday-themed posts here ("It's Arbor Day, folks, and special needs families just love trees!"), but I think I'm going to make an exception for Labor Day. There are a lot of hard working people in this country, but those of us in the world of disability parenting find ourselves surrounded by the hardest working humans on the planet. For our kids, finding success in school and in the world is a lot like being an astronaut. We understand that the person standing on the moon is an extraordinary individual, and we celebrate that person's achievement. We do so, however, with the knowledge that it took a team to support those efforts and help that astronaut arrive.

To the people like her, which is perhaps everyone

Today at Support for Special Needs:

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When Schuyler looks at the future, she does so with her disability in mind, but not at the front of her thoughts. I envy her that. She's growing up quickly; today is her first day of high school, after all. We're having conversations identical to those happening in other houses around the world, about how it's appropriate for her to be thinking about boys she'd like to date, or girls she'd like to date, for that matter. ("Or both!" she said during our last conversation about dating; she's going to be trouble.) She asks me to teach her how to drive approximately every other day. When she breaks through her social anxiety, she laughs loudly and easily, and flirts without hesitation. Even a few months ago, I had my doubts about how she will navigate high school. She has those doubts, too, but she's working on them. And the thing is, only some of those doubts stem from her disability.

Unwanted monsters

Today at Support for Special Needs:

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Schuyler understands her disability better now than she ever has before. I'm immeasurably proud of her for that. But every so often, when things are hard, she pushes back a little. She doesn't rage, she doesn't cry or fall into despair, all of which I imagine would be my own response if I were in her shoes. She simply goes on record as saying that she doesn't want it. She knows her monster doesn't require her permission to do its wicked work, but she denies it that permission anyway. I'm incredibly proud of her for that as well.

Deconstructing the Gentle Lie

This morning at Support for Special Needs:

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Beyond mythological figures, there's the gradually disintegrating gentle lie we tell our children, the one that says that if they work hard enough or want it bad enough, they can do anything they want in the world. For kids with special needs, I suppose it's not all that different. As parents, we overbelieve, and we sell that overbelief to our kids, and that's not a bad thing, I don't think. As they grow older, like Santa, they begin to see the flaws in our lie, and as they deconstruct it bit by bit, they begin to incrementally build a more pragmatic truth in its place. They sniff out the path that does await them, the one that is meaningful and possible. As their parents, we can help, but in the end, it's not our quest. It's theirs.

The High School Chapter, Page One

Today at Support for Special Needs:

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Schuyler started her summer band camp this morning, so I guess this is sort of the unofficial beginning of her high school years. Two weeks of 7am-to-noon rehearsals, a week of evening practices, and then ninth grade classes begin for real. I remember my own high school days, of marching band practice beginning in August, under a hot West Texas sun. It sounds miserable, and it was. It was also kind of glorious. In a weird way, I envy her, although it must be said, I also predict I'll be back in bed by 7:30.

The World in a Room

Today at Support for Special Needs:

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The hard part comes in trying to help Schuyler decide what to give away and what to keep. We stay out of her way, even though honestly, she's not making a lot of progress. But it's up to her to decide, not so much what's appropriate to her age, because her age gives an incomplete picture of who she is and what's appropriate for her. No, for Schuyler, it's a process of deciding what is relevant to her now, to her life at this stage. When she starts high school in the coming weeks, I suspect her choices might change.

Eleven Years

Today at Support for Special Needs:

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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.

Schuyler's Sense of Self

Today at Support for Special Needs:

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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.

Independence Days

Today at Support for Special Needs:

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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.

"Thanks, but..."

Today at Support for Special Needs:

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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.

The Gatekeepers of Entitlement

Today at Support for Special Needs:

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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.

"Once more, unto the breach..."

Today (a day late, sorry) at Support for Special Needs.

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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.

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.

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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.

Flygirl

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.

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.