November 23, 2011


Thanksgiving can be sort of tricky for special needs parents sometimes. Christmas is perhaps a little easier, I think, only because virtues like compassion and acceptance are usually in abundance during the Holidays (the sinister War on Christmas notwithstanding). There's an element of taking stock at Thanksgiving, however, that can be challenging for special needs families most of all. We're not always on board with making lemonade out of those life-handed lemons under the best of circumstances, after all. We'd like to cut those lemons and stick them in someone's eye much of the time, really. Being told "It's Thanksgiving, goddamn it, there's always something to be thankful for, so get thanking, you!" doesn't always sit well.

Thing is, though, it's true. There is always something deserving of gratitude. It can be hard to silently endure the "We're thankful that little Madison was the top scorer on her soccer team!" status updates on our friends' Facebook pages, but we do what we always do. We recalibrate for our own lives and our own worlds. We're not lowering the bar, certainly; I feel pretty certain that Schuyler works every bit as hard and every bit as smartly as little Madison, and gets handed lemons that would crush Madison's mom's minivan like a bug.

Thanksgiving for our families is different from that of the neurotypical family. And perhaps it's exactly the same, too.

Parents of neurotypical kids probably don't express gratitude for their child's ability to speak (some of them very much do not, I suspect), but this year, I am thankful that Schuyler has made such great strides in communication that her garbled but improving verbal speech, her sign language, her AAC device and her Advanced Mime School techniques have allowed her to succeed in her new school beyond our expectations.

I'm thankful that Schuyler's hunger for independence and The New has served her well in middle school. She gets overwhelmed, to be sure, and she screws up frequently. But her teachers seem to understand that making those mistakes is good for her. Schuyler has stumbled a lot, particularly in the past few weeks. She is definitely ready for a little break, I think, and a chance to regain her focus. But there is a lot about middle school that neurotypical kids don't necessarily have to constantly work to master. I think the time will be here soon when Schuyler won't have to work so hard to navigate those obstacles, either. For that, I am preemptively thankful.

I'm thankful that Schuyler's brain seems to be messing with her in small and manageable ways. The maybe-seizures that may or may not have been tormenting her last spring have maybe returned a time or two, maybe maybe maybe. (Stupid inconclusive, ill-timed EEG; we'd love to try again, but our money-tree seems to have developed root rot.) It occurred to us a few weeks ago, when Schuyler maybe had a maybe seizure in our maybe living room, that she may very well be having them regularly, but has simply adjusted to them and compensated for their effects. Maybe. I know many parents for whom seizures are the cause of constant vigilance and anxiety, and I also know parents who have buried the kids that seizures took from them. Of all the things I am thankful for this year, the relatively kittenish qualities of Polly (as Schuyler refers to "the little monster in my head") are probably the most heartfelt.

I'm thankful that Schuyler can self-regulate her diet and is at a low risk for choking now. I'm not sure how many parents are thankful that their neurotypical kids can eat, but I am. I'm thankful that Schuyler has incorporated punky cool wristbands into her fashion style so that she can discreetly deal with her occasional drooling. I'm thankful that she is finding her way to navigate through the world. I resent the fact that the world has so little space for kids who are different, kids like Schuyler, but she doesn't seem to share that resentment. She simply adjusts, without shame but instead with a matter-of-factness that seems to minimize her difference by owning it with as little drama as possible.

I'm thankful for Schuyler's independence, and for her positive attitude as she makes her way in the world. That's no small thing. No one can predict what kind of adult Schuyler will be, but I don't think she's on a pathway to bitterness and resentment. She's always behaved as something of a self-appointed ambassador between her special ed classmates and the neurotypical kids in her mainstream classes. Schuyler turns twelve next month, which I think is probably old enough to start considering a lot of her personality traits to be hard-wired. I see in Schuyler the beginnings of a community builder, a positive force for whatever she chooses. I'm thankful for the young lady she's growing into.

I'm thankful for the friends who have been so supportive of Schuyler, particularly the two who will take over her feeding and watering and occasional hosing down in the unlikely event that Julie and I should perish together. (Or murder each other; don't rule that out.) Ask any special needs parent what keeps them up at night, and they might very well answer "What would become of my kid if something happened to me?" Having the beginnings of a plan in place represents a great deal of peace of mind for us. I'm also thankful to have a good job with a big-hearted boss and the flexibility to take care of Schuyler when I need to. That's also an amazing thing to be able to say. I'm grateful to everyone who has kept Schuyler in their hearts and yes, their prayers, over the years.

Finally, in a weird way, I am also ever-so-slightly thankful for Schuyler's monster. It's a motherfucker, to be sure, but it has put some obstacles in her way, and in ours, which have made us all better people in the overcoming. It has helped to make Schuyler who she is, although as I watch how hard she works against it, I would still take it away from her in an instant. I can guarantee that we pay closer attention to Schuyler when she's trying to tell us something than most parents of neurotypical kids, out of necessity, but a funny thing happens as a result. In watching Schuyler closely and in listening for her inflection, we are rewarded with an intense intimacy in our interaction. In waiting for her to form more complicated thoughts on her AAC device, we develop a kind of patience that I can't imagine is paralleled in neurotypical parenting. As a young child, Schuyler's internal world was a place that was mostly inscrutable to us. The older she gets and the more clearly she communicates, the more we get to explore that weird and wonderful world of hers.

Some of her walls have transformed, through her hard and often frustrating work, into windows. A few of them have even become doors. And for that, I am truly and unshakably thankful.

November 21, 2011

The Things Unseen

There's a new piece called "The Things Unseen" over at Support for Special Needs.

Everyone have a nice Thanksgiving this week, if you're an American, and a swell Thursday if you're not (or if you're a thankless grouch, I suppose). I will be turning forty-four on Saturday, assuming I don't have a very, very bad week.

Ha ha! I'm old.

November 10, 2011

Season of Gratitude

Much of the life of a special needs parent involves anticipating the worst case scenarios and avoiding them if possible. It never stops, and it never should. If I want to enjoy the unique privilege of being Schuyler's father and friend, the price I pay is never-ending monster watch, a constant vigilance against this grand rough world and its many harms. And really, even at its worst, that price is a bargain.

But sometimes, our vigilance can stand in the way of seeing the things that are in fact going well, going better than expected. I see a number of friends online taking the month of November to give thanks for the good things in their lives. Now personally, I've reserved November for growing a frightening critter on my face and turning an age that might be described as "thirty-fourteen", but I will take this opportunity to express my gratitude, and my relief, for one very important item.

In some very significant ways, Schuyler is thriving at her new school. And her teachers believe in her.

We had the opportunity to drop in at the end of the school day yesterday, in order to pick up the band fundraiser pizza kits we ordered. (Cheese pizzas were a little iffy, but the cheesy bread? I am powerless.) When we walked in, the school was a swirling mass of preteen chaos. I felt a little like Richard Dreyfuss at the end of Close Encounters. And when we found Schuyler, things at first glance were not very encouraging.

We walking down the hall and looked for her near her locker. We only found her after the kids thinned out a bit, for the simple reason that Schuyler was sitting on the floor, her belongings spread out around her as she loaded them into her backpack. For a moment I thought that she had been knocked down Chumbawamba-style, her books scattered by some bully, but when she looked up and saw us, she greeted us cheerfully.

Turns out that's how she does it every day. And for some reason, no one in the crazy busy hallway seems to mind. They just work around her.

As we walked down the halls, I could see once again that as I mentioned elsewhere, Schuyler mostly stands apart from her neurotypical classmates. But what I saw clearly yesterday was that although she's not entirely or even mostly part of their world, they are very much a part of hers.

Schuyler walks down the hall like Mayor McCheese. Every few feet, a student or a teacher says hi to her. One tall girl who had to be two grades older greeted her unhesitatingly with a big hug. Schuyler isn't deeply involved in the social fabric of her classmates, and perhaps it was a silly dream to hope otherwise. But I don't think she's being bullied, and I don't think she's being ignored. If she remains something of an enigma to her classmates, she's an intriguing one, and a mystery worth exploring.

Talking to a few of Schuyler's teachers gave us more information. Schuyler participates enthusiastically and with increasing accuracy, and she gets help from her classmates. As her confidence grows, so does the quality of her participation. Her band director is especially excited about Schuyler's work. We were all ready for Schuyler to require a great deal of modification in her band class, and there's been some. But not as much as any of us anticipated. She's playing independently on the marimba in particular, and yesterday was playing her part by herself in a group. Jolly Old St. Nick, she's got your number.

The thing that more than one teacher expressed that surprised me a little was how rarely Schuyler uses her speech device at school. Not because she's a rotten kid or isn't being supported or feels self-conscious about using it.

She doesn't use it because people understand her.

I've never given up hope, perhaps foolishly, that Schuyler might one day speak intelligibly, and I should be clear. She isn't, not yet, anyway. But the verbal speech that she has and the inflection that she's mastered, along with her signs and her writing, these have given her enough communication ability that she can make herself understood under her own power much of the time.

Schuyler's adapting to her new school environment, but I'll be damned if the school isn't adapting right back.

We've learned not to take this kind of thing for granted, and there's at least one teacher who might not be on board as much as the others. And we've certainly seen a good school situation go sour, so we're not inclined to let it surprise us again. But what we're seeing with her middle school teachers is incredibly encouraging. I feel like Schuyler is on track, and it's been a while since I really felt that was true.

After we talked to Schuyler's teachers, we discussed what was happening, and why things are different now. This school district is one of the best in the state, and Schuyler moved up from one excellent school to another. What's different now? It's an important question. Here are a few thoughts.

Schuyler loves change, and middle school was a huge one. Many special needs kids thrive on routine; Schuyler is almost the opposite. She still needs a lot of structure, but it's a little like eating her vegetables. She's energized by new faces and new places, and every day in middle school provides plenty of both. Even when it trips her up (and it does frequently), the chaos also excites her.

Schuyler's new teachers are looking for her possibilities, not her limits. There is very little "I don't think she can do this" talk going on with her teachers. When modifications are needed, they are made, but they are rarely a starting point.

Her band director in particular is working hard to keep Schuyler on par with her fellow percussionists, and the payoff is Schuyler's bursting joy when she finds herself playing just like everyone else. This week, Schuyler was playing one part of an ensemble piece by herself while her classmates played different parts. When she realized that she was the only person playing the second marimba line, AND she was playing it exactly right, Schuyler apparently lost her mind with happiness.

The result of this new confidence is that she's speaking up in band class more, and approaching the director more frequently. And the director was happy to note that she can understand what Schuyler says.

There it is again: People are understanding Schuyler's communication. When I type that out, something stirs in the center of me, like a dream I dare not acknowledge, the idea that Schuyler is making herself understood without her speech device. When she first began using an AAC device, that was very much NOT the case. She was almost completely unintelligible, and the reaction she got from the world was predictable. Schuyler isn't communicating; her value is therefore diminished.

Well, I believe she WAS communicating. But she wasn't being heard. Certainly not by her teachers back in Austin, and probably not by her family either, not entirely. After six years of verbal modeling with her speech device and the language skills that it helped to teach and re-enforce, Schuyler is seen as a person whose speech is hard to understand, perhaps, but there and waiting to be unlocked. It's still hard work, for her and for the world around her, but she's making it happen. Every day, in ways large and small, Schuyler is gradually taking the wheel.

Schuyler's teachers are excited about working with her, and they are learning how to teach her. I think that's the most important factor with her recent success. It's not just that they are good teachers, although they clearly are excellent educators. She's been failed by more than one good teacher in the past, at previous schools. Now, however, I feel like they are searching for Schuyler's potential, not her ceiling.

Most of her teachers have stayed in close contact with us, keeping us informed of her progress and just how that progress is being made, and asking questions when she stumbles. I can feel their pride when they reach her. Schuyler can be a puzzle, and a challenge, and if you think of her that way rather than focusing on what she can't do, then you start to find her pathways to learning. I feel like that's happening now.

Will it last? Schuyler is a lot of work for teachers, and her middle school experience is just beginning. We've certainly watched as a dream situation has soured in the past. But we dare to hope, because that's what we do. And we dare to believe in someone besides Schuyler, and in all the possibilities that her new school seems to be unlocking.

So in this season of gratitude, I am thankful for Schuyler's new teachers, and her new school life, and the new pathways that are opening up for her, even if they still lead off into a foggy future.

November 7, 2011


Once again, I've written a piece, this one called "Invisible", for the fine people over at Support for Special Needs. And the good news, at least for me, is that it looks like I'll be a regular contributor over there. Here's hoping it's good news for them as well.

(Also, don't forget that November is "cultivating an ugly plot of facial hair to help fight Cancers of the Man Parts" month. Go visit my Movember page to learn more.)