What to say this morning, in the aftermath of Schuyler’s IEP meeting last Friday?

It was the best of times, it was the worst of times.

I thought it might be a bad one going in, actually, one in which we were going to have to fight tooth and claw for what we wanted for Schuyler. It has become more and more clear that Schuyler’s assistive speech technology use has been neglected, a fault for which I take as much blame as anyone. Her special education team has been doing fantastic work, but a kind of dependence on Schuyler’s verbal speech had made all of us a little lazy.

Schuyler using verbal speech sounds like a good thing, a great thing, even. Almost a decade ago (God, has it been that long), when she was diagnosed, the idea that she might one day verbally communicate in school would have felt miraculous. But there’s a tough reality. Schuyler’s verbal speech can usually be deciphered when it’s in the context of a conversation where her responses can be anticipated. In reactionary situations, Schuyler does pretty well. But when she wants to express a thought that is independent, or which is complex, her verbal speech fails her, badly.

The problem with school is simply that almost all of her conversations now are contextual. For her teachers, that means that she can go all year using nothing but her verbal speech and do pretty well. For her classmates, however, it means that for Schuyler to be comprehended verbally, she has to speak in very simple sentences. Schuyler dumbs it down so that she can be understood. It’s easy to miss that she’s not doing very much in the way of independently generated, complex communication.

Schuyler is finishing seventh grade. The days where that kind of communication will adequately serve her are critically numbered. I’d argue that they’ve probably been over already for some time.

We went into this IEP meeting asking for a lot, requesting no less than a total shift in the philosophy behind her AAC usage. The benchmark for success would no longer be that she managed to convey her simplest points through verbal speech, or that she could use her iPad to clarify when that speech failed her. Her iPad would no longer be a parachute. Schuyler would be encouraged, by all her teachers, to use AAC as a primary mode of communication. And we requested an outside consultant with whom we have been very successfully working for the past few weeks, to facilitate a workshop and to help lead this sea change in AAC philosophy, not just for Schuyler but possibly for those who come after her.

As we discussed the way that the iPad provides an opportunity for comprehensive communication that is impossible for Schuyler when she uses her simplified verbal communication, I handed out copies of a poem (with Schuyler’s permission) that Schuyler had written two days before. Her band director and I had discussed possible ways to get Schuyler to embrace her creativity, and the suggestion was made that if Schuyler could write a poem (something she’d toyed with before), the director would turn it into a song for her. When I floated this idea to Schuyler, she pounced on it.

This is what she created as a result.

When I shared the poem, I asked the rest of her team if they thought Schuyler could ever communicate the things in this poem using just her verbal speech. I asked if they’d known such a poem was even in her. I think Schuyler’s words had an impact, much more than anything we said. In her way, she self-advocated like a pro.

So we knocked all this around the meeting, and we came away with what felt like small victories at the time. We rejected the speech therapist and assistive technology team’s goals for language and speech, and set a date for another meeting later this month to amend them further into something comprehensive and measurable. So essentially we punted on the hard stuff. And our request for a consultant-led workshop is going to be considered, which might be a polite way of saying that they’re going to spend the next two weeks coming up with a solid way to say no. I think we’re going to have to fight hard for this one, in no small part because there’s a perception that we’re asking for someone to come in from the outside to facilitate something that the assistive technology team should have been doing.

Which might be true enough. Toes might be stepped on, I concede that. It just can’t be our problem if they are.

Overall, it wasn’t a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we’d resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.

Did we achieve what we needed to? We’ll find out soon enough. Teeth to remain bared a little longer; claws to remain sharp.

Schuyler returns to school tomorrow. Well. I guess it had to happen sooner or later.

I suppose every parent has mixed feelings about their kids’ return to class after the holiday break. Unless your kid is perfectly delightful all the time (in which case you’re either lying, delusional, or most likely not paying very close attention) or is a rotten pain in the ass (I think I might have met your child before, sorry), the return is bittersweet. It’s a little like the ending of Polar Express, when Santa finally stops screwing around and flies off to deliver the toys. There’s a moment of silence where everyone ponders the wonder and the miracle they’ve just witnessed. Then all the elves start screaming and dancing and lighting up.

For parents of kids with special needs, I suppose it might be a little more complicated.

Our family holiday probably wasn’t like yours, not entirely. If we had friends over for New Year’s Eve, it was a low-key affair, because our children don’t usually just go to bed and that’s that, and staying up with the grownups is probably asking too much for many of our kids. (But let’s be frank. We probably didn’t have friends over.) If we had a family Christmas, we endured questions from the more distant family members, smiled without a hint of outer sadness as other parents bragged about their own kids’ academic accomplishments or fretted about problems we’ll never get to worry over, and maybe watched our kids’ interactions with their relatives or monitored their special dietary concerns so closely that we might not have actually eaten much ourselves. (I did not have this problem.) When it was all over, we went home and restored our decked halls to their previous condition, and sighed and kept doing what we do, because we don’t often get the opportunity to not be doing it.

The return to school can feel like a chance to stop for just a moment and not do. For just a moment or two.

But at the same time, the return to school means letting go again. It means sending our kids back into the fray, and even without the specter of Newtown hanging over our psyches, that’s a daunting task for special needs parents. We send our children back, even though we know they’re less safe when they’re not with us, less understood when they are in the care of even the good teachers, less sheltered when they are surrounded by their peers-who-are-not-necessarily-really-peers.

And we do so willingly, even enthusiastically (sort of, maybe), because we know that they’re better off being in the less safe, less understanding world. They are better off stumbling, failing, hurting, learning the hard way, because they’ll never grow with our arms around them. They’ll never thrive without clean air and nurturing sunlight and a fresh breeze to blow them away from us. It’s a hard world for our kids, but it’s theirs, and so we send them back into it with newly organized backpacks and freshly cleaned lunchboxes and new school supplies because what happened to all the stuff we just bought you, for God’s sake?

Tomorrow, Schuyler returns to middle school, and it may be Lord of the Flies, but she’s not Piggy, not just yet. It’s hard, and harder for her than most. If there’s one thing I’d pay real cash money to never hear again, it would be how Schuyler’s middle school challenges are just like those of any other thirteen year-old girl. The people who say this think they’re being comforting, but what they are actually doing is reenforcing a fact that we already know too well. Not very many people understand how this is. Not many people get it. And those who do are almost certainly in The Club.

I’ll put Schuyler on the bus, and I’ll feel relief that she’s going back and fighting the good fight again, and I’ll feel sadness at exactly what’s waiting for her when she gets there and how daunting the odds that are stacked against her really might turn out to be.

And I’ll watch the clock closely, even as I pretend not to, and when it reaches four o’clock, I’ll listen for the PSHHHH! of the bus and try to force myself not to go outside and meet her as she arrives.

I’ll try, but I’ll fail. I’ll be standing there when she steps off. I figure that’s not the worst way I can fail her.

I can’t believe I’m about to do this, the most clichéd topic in all of bloggery. I am actually writing a Thanksgiving post. I’m really going to do it.

Well, perhaps it’s not all that straightforward, at least not for parents of kids with disabilities. For one thing, we’re not all coming at it from the same perspective, or with the same core beliefs. Some of us are in a place of acceptance, and others of us still shake our angry fists at the sky. Some of us embrace neurodiversity, while others fight to bring our kids some measure of the life that their unimpaired peers enjoy without so much as a thought. There are parents who are thankful for every day that their kids are alive, all too aware of how precious those days might be. Others of us are equally thankful for every day that we as their parents can be with them, ever mindful of our own mortality and the burning question, Who will take care of them when we’re gone?

For every disability parent who is thankful that their plane landed in Holland, there’s another of us with a lot of questions about why OUR plane landed in Mogadishu instead, or on Mars.

Of all the things in our lives and the lives of our special needs children that are broken, perhaps our thanks are broken as well. But like so much else in our imperfect lives, our gratitude is sincere, the product of the triumphs and the failures we endure every day.

I can only speak for myself, of course. As an agnostic, I’ve never been a particularly devout believer, but likewise I’ve never written God off as a possibility. My wife once said that I’ll never be an atheist because then I’d never have anyone to blame for Schuyler’s condition, or at least someone to fight with about it. And I suppose there’s some truth to that.

When I talk to God, as I infrequently do, there can be a lot of frustration when things are rough, and perhaps no small measure of inappropriate pride when things go right, when Schuyler lands on her feet despite what seems like divine intervention against her. My inappropriate but heartfelt conversations with God range from “Why are you doing this to her?” to variations on “Nice try, asshole.”

But sometimes, when I’m feeling the high road under my feet, I find myself expressing gratitude for much in our lives. And in this week, as we prepare for Thanksgiving, that most quintessential of American holidays, I suppose I could do worse than to spell them out right here.

Some of the things I’m thankful for are definitely items of old business. I’m thankful that I worked for the Yale School of Medicine during those critical years when we searched for a diagnosis for Schuyler. My health plan was simple: Schuyler’s medical care was provided by the amazing people at the Yale Med School and the Yale New Haven Hospital. She received help and diagnostic care from some of the smartest people on the planet, care that I could never have afforded otherwise.

I’m also thankful that Schuyler found her way to a school district that was capable of helping her, and open to the idea of assistive technology as an integral part of her curriculum. As I speak to other parents around the country, I remain all too aware of how rare that support really can be.

I’m thankful to all the people who gave her such a good start with assistive technology. That extends from the amazing folks at the Prentke-Romich Company to the teachers in the Plano Independent School District. It reaches from the readers who contributed to the purchase of her very first AAC device to the independent developers and therapists out there who are constantly moving the field of assistive technology forward and creating opportunities for communication and inclusion that would have been unthinkable just a few years ago.

I have new gratitudes as well. Over the past few years, I’ve met some extraordinary people in the online community. I’ve met some awful people, too, but it’s funny how they don’t seem to stick around. It’s the ones who really matter who seem omnipresent. I can’t imagine what Schuyler’s life, or mine for that matter, would be like without the larger online world as a part of it. I’m especially thankful for all the people I’ve met while speaking to virtual classrooms or at speech language conferences over the years. I can’t imagine that they’ve gotten as much from the experience as I have. Or as Schuyler has, either.

I am thankful every day to the members of my family, to be sure. But especially of late, I am filled with gratitude and love for those who have become like family to us, to those who have opened up their lives to Schuyler and have become a vital part of her world. Her family is expanding, and her heart continues to show no limits in the amount of love she has to offer in return.

I’m thankful for less tangible things. When I read about the struggles that other families go through, I feel almost guiltily thankful that for the time being, and hopefully for a very long time, Schuyler’s own particular monster doesn’t seem to endanger her life. And while I’m always aware that it is the world that is lacking in its appreciate for her uniqueness, I am nevertheless thankful for the small battles she successfully wages just to feel like a typical twelve year-old girl. I hate that “passing” is so important to her, but I’m thankful for the times that she’s able to do it.

One thing that I am fairly certain is a gratitude reserved for parents like myself is this one, which I don’t write lightly or without hesitation. I’m thankful, perhaps weirdly, for the amount of badness that escapes my daughter because of her disability. She’s without guile, and while she is very sensitive to how she is regarded by others, and is certainly aware of when people are making fun of her, it is nevertheless true that the worst of it probably misses her. She knows what people are saying when they use the word “retarded”, and she has grown almost paranoid about the friendships that she feels slipping away from her as her peers find their cool groups, cliques into which she never easily fits. But I watch as some kids, and some adults, make fun of her in ways subtle enough to escape her notice, and for that, I am oddly (and perhaps a bit shamefully) thankful.

Most of all, especially of late, I’m glad Schuyler is by and large unaware of the darker aspects of the Internet community, and the anonymous cruelty and spiritual bankruptcy infecting so much of it from within.

For myself, I’m thankful for the fact that of all the fathers in the world who could have had Schuyler as their own, God or Fate or random selection (you choose) saw fit to place her with me. I have failed her so many times, and sometimes in ways breathtakingly big, but she has never returned the favor. Schuyler has been the most extraordinary presence in my world, and while I sometimes see grey around me, it is washed away by color and song the moment she enters the room.

I’ve never been thankful for Schuyler’s monster, and I never ever will. But I’m filled with gratitude for the opportunity to help her take arms against it. And no matter how it goes or what strange turns it may take, I am thankful, ever thankful, that her path through this world is mine to share.