December 29, 2014

Theories of Everything

This week at Support for Special Needs:
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!

December 22, 2014

Christmas 2015

This week, at Support for Special Needs:
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.

December 21, 2014

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.

December 17, 2014

Some Thoughts on a Very Very Very Bad Idea

This week at Support for Special Needs:
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.

December 8, 2014

A Scene, and a Revelation

Today at Support for Special Needs:
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.

December 1, 2014

Then and Now

Today at Support for Special Needs:
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.

November 24, 2014

Thanksgiving 2014

Today at Support for Special Needs:
I worry for Schuyler around my birthday more then usual, especially with the grey skies and desaturated colors of fall settling in for the coming months. It's just as well that Thanksgiving arrives at the same time. A day for examining the things for which I should give thanks, followed by a season of celebrating the better impulses of humanity, these might be parachutes in an otherwise rapid loss of emotional altitude. Perhaps I should simply be thankful for Thanksgiving and it's slightly contrived but much needed sense of "Quit your bitching and think of stuff to be thankful for!"

November 17, 2014

Boundaries, Drawn with a Dull Pencil

Today at Support for Special Needs:
Failure is how Schuyler learns. She is a remarkably stubborn kid; she fixates on problems, particularly those she perceives as injustices, and doesn't let go of them easily. (According to Julie, this is a case of the apple not falling far from the tree.) It can be frustrating as a parent, and hard to step back when she clearly does need help, but steadfastly does not want it. Schuyler wants to make her way in the world, even as she struggles to understand it now perhaps more than ever before. That world has become so much bigger, and her part in navigating it so much more complex.

November 10, 2014


Today at Support for Special Needs:
We spend years preparing our astronaut for her grand mission. Years. Then one day, in the not terribly distant future, we will count down and launch her into the unknown. We'll watch that flame rise into the sky, and eventually its brightness will fade and the rumble of the engines will be too distant to hear, and we'll sit in our mission control, in silence. 
When Schuyler takes flight and soars into the void, she will be alone.

November 4, 2014

The World I Want

Today at Support for Special Needs:
Given my heart's desire from a magic genie, I might not wish for Schuyler to be made typical enough to make it in the world. It is entirely possible that I would instead choose a world that had places for Schuyler, a world that found value in her weirdness and the patience to wait to hear what she has to say. If I were wise, perhaps I would recognize that given a choice between these two unattainable wishes, the second might just make for a much more interesting planet.

November 3, 2014

Making Our Own Ice

I want to discuss something very specific to augmentative alternative communication, so my apologies in advance if this isn't part of your world. I specifically want to address the strange, illogical divide in the professional speech technology world between those who use dedicated speech devices and those who find success with consumer electronics products like Apple's iPad. I'm still surprised to watch these conversations unfold online and see how blithely parent advocates and end users are often condescended to. Frankly, it pisses me off, which is why I'm subjecting you to this post.

Some of the discord comes from representatives of the big speech device makers, companies who are responsible for developing the technologies that AAC users have come to depend on but who have been struggling to sustain their business models now that commercial tablets have democratized the AAC process. It's a huge shift, and one that the industry is still trying to figure out. For a specific subset of ambulatory users, suddenly the potential purchase price for a speech language system has dropped from something in the area of eight thousand dollars (plus service agreements that can run around a thousand dollars a year) to under a grand, depending on the communications app and however many whistles and bells you choose for your tablet. So potentially MUCH under a grand.

This change has meant that where once insurance companies and school administrators held final say in the systems purchased, for some that power has now shifted. Parents and end users themselves are suddenly able to make decisions about the technology that allows them to communicate. This democratization comes with pitfalls. It is up to these parents and users to get good information about the language software that is available, and to find resources to determine what AAC needs they or their kids may have. They don't always have the support personnel in place to assist them in making good decisions. There are a lot of very, very bad AAC apps out there, and clearly someone is buying them.

The problem with the dialogue that is taking place in sectors of the AAC community is that it makes some dubious assumptions. Cheaper is inferior. Using commercial tablets amounts to a "one size fits all" approach. More expensive systems mean more solid support. You get what you pay for. And teachers, parents and end users are simply not qualified to make those choices.

Getting good support for systems running on consumer electronics is a real concern. But honestly, it's no different from the situation faced by many schools and families out there with dedicated devices without any meaningful local support. It's an industry-wide problem, and honestly one that can be exacerbated for users of expensive dedicated devices by the prohibitive cost of maintaining service agreements from year to year, as well as issues like loaner devices for repair downtime.

iPads and other consumer tablets aren't a fit for every user or even most users, and I'm not sure I've ever heard anyone make the case that they are. But for users like Schuyler and thousands more like her, these tablets provide possibilities that go beyond a speech prosthesis. To say that we are in one "camp" or another, and that AAC users are divided between dedicated devices and consumer electronics, is a gross oversimplification, and it's not accurate. Schuyler uses an iPad, and it runs the same language software that she used on her dedicated device, back when it was the appropriate choice for her. She not in a camp; she's a hybrid, and I suspect she's the rule, not the exception.

In a piece she wrote for BridgingApps a few months ago, Schuyler had this to say about using her iPad:
I like to use my iPad Mini because it help me with talking and I can looks things up like the the right stuff for school. It makes me as other people. When I used my old speech device, it looks like something wrong with me.


It looks I’m like other people.
One day, I am hopeful that Schuyler will make peace with her differences and even celebrate them. It's something that we encourage in her self-identification and always have. But she's an ambulatory fourteen year-old girl with an invisible disability, attending a public school where she desperately wants to fit in. She's not interested in neurodiversity, because she's in a world where difference is problematic. That's not ideal, but it's her Now World. For Schuyler, the iPad provides a way to fit in a little better, and to participate in a world of technology and online social presence. And she does so using the same language system that she learned on her dedicated speech device.

Her situation mirrors a great many AAC users her age. And for Schuyler and her fellow invisibly disabled peers, the iPad has transformed weird looks into curious questions. She has gone from an effective medical prosthesis that almost miraculously gave her language she never had before but also sometimes stigmatized her to a new powerful tool that also functions as a part of a social narrative in which everyday tech is inclusive.

Inclusive. That's important.

No one is suggesting that this technology will work for everyone. But for speech professionals to suggest that consumer tablet technology like the iPad is somehow universally cheap and inferior isn't just incorrect, although let's be very clear on this point. It is WILDLY incorrect. For many users like Schuyler, systems like the iPad have presented a far superior solution. So no, belittling that technology isn't just untrue. It's demeaning. It often represents an attitude that looks backwards, like a turn-of-the-century ice merchant haughtily dismissing newfangled electric ice makers. It attempts to shame users and parents into abandoning their hard-earned new autonomy. "You'll never be capable of supporting and advocating for yourself," the argument suggests. "You need to step back and let the grownups make those choices."

End users and parents and therapists and teachers, they are becoming experts, out of necessity and because they represent the ground troops. They're making their own ice, not just more cheaply but with greater flexibility and efficiency. Professional support entities now need to make some difficult choices about what the future of their industry looks like, and how to create the business models that keep them employed and relevant, and that keep their clients taken care of. These speech professionals are the natural leaders we look to.

But if there's one thing we've learned over the years, it's how to take the reins in hand when necessary. We're mostly okay with that outcome, too.

October 27, 2014

A Season of Making Sense

Today at Support for Special Needs:
We like Halloween around here. Part of Schuyler's fondness for the holiday probably stems, as it does for many kids with disabilities both obvious and invisible, from the opportunity to pass, if only superficially and for a short time, as no different from other kids. On most days, Schuyler is hyperaware of her difference, but on Halloween, the world is full of monsters and oddities and weirdos. Whatever she may think of herself on most days, this is the week where she's just one of the creepy crowd.

October 21, 2014


Today at Support for Special Needs:
Today, I’m tired of the walking. I’m tired of screwing up, and I’m tired of other people treating Schuyler like a cute little pet who might pee on the carpet, rather than a complicated and nuanced human being. My weapon is a rubber sword today, and it feels especially ineffective. I’m just going to sit for a while and see what happens. I wish I had something in my tank, and I’m sure I will tomorrow. But not today. Sorry.

October 20, 2014

Goodbye, Petey

Over the weekend, we said a sudden and unexpected goodbye to Petey, who had been with us since he was a tiny puppy in 2005.

Petey was a shy and sensitive dog (nonverbal, too, ironically) and he and Julie in particular loved each other deeply. If Julie was home, Petey was next to her; I was very much Petey's B Team. But if Julie wasn't around, Petey and I were play buddies, growly wrestlers and shameless dance partners. Petey left a very sad bunch of people and pooches behind him. It hit me last night that I'll never sing my "Petey Bo-Beety, the Petey Pop Pop" song to him again. He left a hole in this family that won't go away any time soon.

Goodbye, Petey. You were the sweetest and most steadfastly loyal dog ever.

October 13, 2014

The Path to Self-Advocacy

Today at Support for Special Needs:
Schuyler is never going to be a confrontational self-advocate, I feel pretty certain of that. She shies away from conflict, even as she holds the grudges that she develops as a result of it. Her own sense of justice doesn't always trump her desire to navigate her life with ease. She loves participating in marching band, for instance, even as she feels slighted by how she's treated (and more to the point, sometimes dismissed) by her band teachers from time to time. She's not interested in taking a stand, so she endures what she perceives as slights and focuses on the fun she's having. Sometimes she's a little student of Zen, in a way that I wish I could be but never am.

October 10, 2014

Teaching Students to Self-Advocate

Amanda Morin and Robert Rummel-Hudson join The Inclusive Class Podcast this week! Amanda Morin is an advocate and author of The Everything Parent's Guide to Special Education. Robert Rummel-Hudson is author of Schuyler's Monster. Together, with Nicole and Terri, the conversation will be about teaching our student's to self-advocate - the pros, the cons, the pitfalls.

Check Out Family Podcasts at Blog Talk Radio with The Inclusive Class Podcast on BlogTalkRadio

October 6, 2014

An Extraordinary Story

Today at Support for Special Needs:
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.

September 29, 2014

Two Simple Experiences

Today at Support for Special Needs:
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.

September 23, 2014

Lily Pads

Today at Support for Special Needs:
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.

September 15, 2014

The Key

Today at Support for Special Needs:
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.

September 8, 2014

The Other Talk

Today at Support for Special Needs:
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.

September 1, 2014

On Labor Day, 2014

Today, at Support for Special Needs:
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.

August 25, 2014

To the people like her, which is perhaps everyone

Today at Support for Special Needs:
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.

August 18, 2014

Unwanted monsters

Today at Support for Special Needs:
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.

August 11, 2014

Deconstructing the Gentle Lie

This morning at Support for Special Needs:
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.

August 4, 2014

The High School Chapter, Page One

Today at Support for Special Needs:
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.

July 28, 2014

The World in a Room

Today at Support for Special Needs:
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.

July 21, 2014

Eleven Years

Today at Support for Special Needs:
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:
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:
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:
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.

May 26, 2014

Insufficient Instrument

Today at Support for Special Needs:
For a guy who's not too smart, I think I do a reasonably good job of navigating the chaos around me. And yet, it is in respect to the most important part of my world where I think I know the least. Schuyler has always been, and remains today, the central mystery of my life. I think I made peace with that years ago, mostly because it is in the journey to understand her mystery that I've grown the most as a person, and found my closest approximation to lasting happiness. I've accepted that as lucky as I am to have Schuyler in my life, I'm mostly not going to get her.
It's beginning to occur to me that I'm not the only one.

May 25, 2014

American Poison

You're probably reading this on Sunday or Monday ("Happy" Memorial Day seems like a weird thing to say), but I'm writing this on Saturday night, in the middle of the media coverage of another horrific mass killing in America. It's at that stage where we're just now getting enough information to begin to understand what happened, and the justified outrage is building up steam, but there's still a lot we don't know. Worse revelations are no doubt still to come. Even at this early stage, though, it feels like a quintessentially American story.

I'm not going to get into the specifics of what happened. I'm not going to name the killer because, well, fuck that guy. He doesn't deserve his new-found, posthumous fame. I'm not going to name the town where it happened, either, because that community doesn't deserve the notoriety that will no doubt follow the event for years to come. If you're reading this the day or the week it was posted, you know it all anyway. If you're reading it months or years from now, I suspect some other terrible but interchangeable thing will have replaced it in the news. If you miss one mass murder in this country, you'll never have to wait long for another. My own feelings about the event are pretty straightforward. As a pacifist, I'm horrified. As a man, I'm ashamed. But as a father, and the father of a daughter, I'm particularly moved, and troubled.

Once again, the media is reporting that the accused shooter is mentally ill, a "madman", according to the first reports from local law enforcement. He's also been identified by the family attorney as having been diagnosed on the autism spectrum, specifically Aspergers syndrome.

For some, it's easy, even comforting, to blame something like this on mental illness or a neurological disability. "That's awful," one might think. "It's a good thing my own kids aren't mentally ill or intellectually disabled."

Separation gives us a sense of safety. "Terrible acts are committed by monsters," we tell ourselves, "and I don't know any monsters." We've been taught our whole lives on some level, perhaps not always directly but with the subtle stain of common vocabulary and social narrative, to fear the mentally ill or neurologically disabled.

Those of us who live in a world of mental illnesses or neurological imperfections understand a deeper truth. People with mental illnesses aren't prone to kill, and persons with disabilities are far more likely to be victims of violence and sexual assault than they are to be perpetrators. And as we're not defined by our afflictions, neither are those who share them but who commit atrocious acts. Mental illness, emotional difficulties, neurological differences, these are part of the tapestry of who we are. Sometimes they are woven in the tapestry of very bad people, too.

"That guy was fucking crazy" feels comfortable, but in this case, as in so many cases, there's a deep and disturbing well of misogyny from which the shooter drew his anger. And like it or not, we need to face the fact that his philosophy, while twisted, did not appear in a void. Even tonight, just a day after the shooting, there's an ugly subculture out there expressing understanding for his rage. This feels significant to me; I don't remember the Newtown massacre bringing out messages of support from people who just don't like kids. But then, hating children isn't acceptable in this country. Hating women is.

The shooter blamed women for the tragedy that he unleashed, and of course this is entirely false. The knee-jerk response of so many is to blame mental illness or a neurological disability for his horrific actions, and this is also wrong, simply a grotesque oversimplification. The responsibility for the murderer's actions fall squarely on him, but with an asterisk. We live in a culture where poison flows in rivers just under the surface. "Fear the fool and the madman. And she was asking for it."

As the father of a teenaged girl with an intellectual disability, my own fears are simple and clear. Schuyler is growing up in a society in which she is devalued twice over. And that fills me with a deep, enduring sadness.

Not just because I can't always be there to protect her. But also because I shouldn't have to be.

May 19, 2014

The Thin Line Between Wrong and Wrong

Today at Support for Special Needs:
But perhaps more importantly, for special needs parents, it's not always as simply the choice between right and wrong. Sometimes, you just have to shoot for the choices that will probably turn out to be wrong, but just perhaps a little less wrong than others. Less damage to undo, fewer apologies, maybe even marginally more restful nights.

May 18, 2014

"...and my heart is closing like a fist."

Schuyler and I are at a quiet burger place. We're having a late lunch after working on a homework project most of the afternoon, and there are only a few other people here. The burgers are good, and they have wi-fi and milkshakes. She's on her iPad watching Netflix, and I'm on my laptop catching up on some work. It's not perfect, but it might be close.

The doors open, and a high school cheerleading squad enters like a tsunami, followed by their parents and friends. The parents are almost comically loud, and the boys are posturing and preening with a forced casualness. The girls are energetic and interchangeable, matching uniforms and identical hair and high wattage smiles. They have quintessential Texas suburban names like Brooke and Madison.

The noise is intense, that much more so for the contrast with the near silence only a few minutes before. I hunker down like a curmudgeon, but Schuyler simply ignores the swirl and noise at first. She's engrossed in whatever movie she's watching. It occurs to me that five days a week, she occupies a world full of teenage chaos. She's unflappable.

Eventually Schuyler begins to watch the kids as they run around, groups forming and breaking up and reforming minutes later. I realize as I watch that this is how I'd hoped Schuyler's cheer squad would behave this year. All my misgivings about Schuyler becoming a cheerleader had been balanced by this idea of a bond between girls, a protective group dynamic. I can see it in this group, in ways that I never saw it in Schuyler's squad. Here there are no outliers, no girl trying to fit in, attempting to join the discussions before finally sitting apart.

There's no Schuyler in this squad.

I can't imagine what Schuyler is thinking, although it is clear that she's very deep in thought. I sneak a few photos of her, trying to catch the reverie in her eyes. I think I manage. When I show her the photo I like the most, she smiles. I ask if I can post it, as I always do, and she says yes.

"Does this remind you of your cheer squad?" I ask her.

"A little," she says. "They're having fun. I wish we had fun."

She watches the girls a bit longer, and her face isn't sad so much as resigned, perhaps. The day before, she and Julie went on a trip with Schuyler's middle school band to a local water park, and the report back from Julie was reminiscent of the year before, and the year before that. It was a repeated sequence, Schuyler trying to break into a group of friends and running with them for a short while before being left behind. Schuyler can be a hard kid to be friends with, I understand. She's excitable and handsy, in that way that many nonverbal kids can be even after they grow older and develop speech. Crucial early childhood years with no expressive language have trained her to communicate with a kind of physicality that can be awkward now that she's a teenager.

Now, the next day, she has withdrawn into herself, not morosely but with a kind of sigh. This is the cycle of Schuyler. She tries to integrate socially, she succeeds at first but all too soon falls out into solitude, and spends some time regrouping before going back into the fray. It's not all because of her disability, I know, because I function in much the same way, and today, Schuyler and I are both turtles pulled into our shells.

Seated in the middle of this cacophony, we've got our walls up. And it's okay. It's not ideal, but it's what we need.

May 17, 2014

Borrowed Happy

"So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be." 
- Stephen Chbosky, The Perks of Being a Wallflower

This is one of those posts I might not actually publish, or that I might think better of and delete after posting it. If you're reading this, you're either Johnny-on-the-Spot, or perhaps I decided not to give the going rate of two shits and left it up. This might be one of those cases where just writing this is cathartic enough to shake me out of my mood and send me on my merry way.

I've been thinking about happiness lately.

(Because of privacy rules, this paragraph is going to be vague. Sorry, I know that's irritating.) I recently embarked on a venture of sorts, one that I thought might lead me down a new path, one that would make me genuinely happy. It ultimately didn't, and I'm taking that failure particularly hard, I won't lie. I feel foolish, and I feel disposable, and if there's a worse way to feel, I'm not sure what it might be. I aspired to something, and my wax wings melted pretty quickly.

The thing is, and I think this is significant, I can't remember the last time I did feel authentic happiness. I know it's been a very long time. If the idea of being truly content with my place in the world is so elusive that I can't even tell you how long it's been, I guess maybe that's an issue. I thought I could see the path until this week. I can't, though.

It's important to note that I'm not some sad mopey bastard with not an ounce of happiness in my life. I think rather the opposite. And when I find my confidence again, as I will shortly, I'll be fine. But it's an undeniable truth that the true satisfaction I find myself feeling is almost always a result of Schuyler's happiness. It comes in things large from time to time, but it's mostly the small joys. A monster movie well-realized. A trip to a comic book store that neither of us expected until we found ourselves standing outside. A joke we've told each other a thousand times. ("Knock knock!" "Come in!")

Schuyler experiences joy, and as a result, I feel some of that reflected warmth as well. I suppose, like a lot of parents (Julie very much included), my own happiness has probably become too caught up in my kid's. I've become dependent on the borrowed happiness I get from her.

If that sounds desperate or sad, I guess perhaps it is. But as I stand here at the end of a shaky week, it might just have to be enough, at least for now.

May 12, 2014

Advocacy, with Heart

Today at Support for Special Needs:
There's a balance to be struck, I imagine. We don't want hysterical, emotional professionals (as entertaining as that might sound), nor do we want dispassion. Experience matters, not so much as a driver of curriculum and the approaches taken with individual kids, because the idea that every kid is a unique snowflake takes on a very different and important meaning when it comes to teaching and treating individuals with disabilities. But personal experience makes us better listeners. It makes us more flexible, and it enables us to think on our feet and, perhaps more importantly, to use our intuition to guide us.

May 5, 2014

On Early Intervention

Today at Support for Special Needs:
When Schuyler was born fourteen years ago, she was (perhaps irresponsibly) placed into the hands of two people who lacked even the most basic experience with a baby. To make matters worse, at least one of those people was an idiot. (SPOILER: It was me.) I shouldn't admit how many times I looked at Schuyler and simply said to myself, "Oh my god, I have a baby and she's still alive. This is one lucky damn baby."

April 28, 2014

This Is Only a Test

Today at Support for Special Needs:
In Texas, our kids take the STAAR test, which replaces the TAKS test, which was probably preceded by the CRAAPS test and the BUUG test. I have no idea what STAAR stands for, and I refuse to go look. It stands for "The Test That Will Take Hours and Days of Actual Instruction Away From Your Kid, Stress Them Out In Ways You'll Probably Not Grasp Until They Go Into Therapy or Rehab or End Up on the News With Helicopters Circling Your House, and Provide Politicians With a Way to Sound Like They Care About Education But Most Assuredly Do Not."

April 27, 2014


It was a rough week. I won't lie. It was rough for me, and it was even worse for Schuyler. One thing I can say for certain about this week, however, is that if bad days offer the chance for learning, I feel like we all had some graduate level education going on. I feel like we should be wearing those little flat hats and robes and jabbering in Latin.

Most of all, we learned that the structures we come to depend on can be unreliable at best. We were reminded that in the end, we can depend on each other, and sometimes that's all.

There are a lot of very individual stories I could tell about last week, but they wouldn't be of much help to anyone reading. Schuyler and I were both actually threatened, individually and in unrelated circumstances, in ways that left us both a little twitchy. That doesn't actually happen very often, to either of us, which is obviously a good thing, but I'm not sure either of us knew exactly how to respond. We didn't fight back, either of us. For that, I'm proud of her and ashamed of myself.

Without getting into details that are not entirely ours to share, I'll simply say that Schuyler learned how friends can be very unfriendly indeed, and perhaps that her own sense of what true friendship looks like needs some new layers of subtlety that don't come easy to her. I think Schuyler learned that school isn't always a place of fairness, and that sometimes she might find her sense of justice bruised by the "path of least resistance" decisions made by the adults around her. As far as important lessons for adult life go, I suspect that's an important one, but I hate watching her learn it.

I learned some of the same lessons, perhaps. As special needs parents, we become accustomed to the idea that the teachers and administrators and therapists who work with our kids stand on certain principles of behavior. We forget, until we're very dramatically reminded, that those professionals are also human beings. They have insecurities and they have tempers and they have blind spots where they cannot gaze for long with an objective eye. They can do solid work but still stumble.

That doesn't make them bad at what they do. If it did, I would be run out of proverbial town on a proverbial rail. Mine is a most personal kind of writing, and my reactions to the world around me are rarely divorced from my emotional responses. That can be hard for parent advocates, but I also believe it's what gives our work a unique kind of value. Professionals work hard for our kids, but they're also invested deeply in their reputations; parents are invested in not screwing up our kids. Unfortunately, that's probably sometimes at odds with our commitment to being correct in our approach. Our strengths can be our weaknesses; our love can make us stumble, too.

This week, I learned most of all how very human we all are, and how that humanity can be the root of so much failure when it comes to doing our work. Schuyler learned that lesson, too, although for her, I suspect it felt like a lesson in the smallness of those of us who profess to, and occasionally even manage to, work to make her life and the lives of her friends better, richer, more fair, more MORE.

Schuyler ended the week owed more apologies than she received, and as her father, that's hard to bear. I made choices for myself that were about peace rather than justice, but I at least fought similar decisions made in her life. I can at least say that. And thanks to a very dedicated teacher who listened to our concerns and went way beyond what she was required to do in order to address those concerns, and on a Saturday night, no less, we were reminded that there are a great many professionals out there who do this work for the best of reasons, and they do it better than I could ever hope to.

It was not a bad way to end a week that went on far, far too long.

April 14, 2014

The Things We Know

Today at Support for Special Needs:
The challenging aspects of being the parent of a special needs kid aren’t always the things you don’t know, although believe me when I say those are bad ones, like "stay up late and start drinking early" bad ones. Sometimes a greater source of parental frustration comes from truly knowing your child, in a way that is simply impossible for a doctor or a teacher or even a family member, and having to work tirelessly to be taken seriously.

April 8, 2014

The Exquisite Joy of Nothing

This week at Support for Special Needs:
This week, we didn’t struggle to understand her, we didn’t have to manage seizures, and there were no bullies to deal with. The Internet wasn’t buzzing with an unusual amount of outrage, and despair felt far away. It was a week where nothing of particular note occurred in relation to Schuyler’s disability. For families of kids with special needs, this can be a rare treat. A week without an easy blog topic is itself worthy of note.

March 31, 2014

The Long-Abandoned Path

Today at Support for Special Needs:
Returning to New England has given me the opportunity to think back on the last 10 years, and to reconsider all the choices that we’ve made, and the paths that we have chosen. That is a foolish endeavor, I know. But just lately, as we prepare for Schuyler to enter high school next year, we are more aware now than ever that the paths we walked down with her did not necessarily lead to unqualified success. It’s hard not to wonder if we could’ve done better for her, which is of course the question that occupies far too much of my mind as it is.

March 25, 2014


Today at Support for Special Needs:
We're already on islands, many of us, but not in a vacation wonderland kind of a way. Our islands aren't floating in a remote blue tropical sea. They exist in plain sight, in the middle of your towns and workplaces and schools. Most of our territories are invisible; you can barely see the fences unless you look closely. And most people don't look that closely.