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.

27 comments:

Suzanne said...

I feel very hopeful after reading this post. I think although middle school gets a bad rap, in some ways it's a good change for a lot of kids. My son, originally diagnosed with Aspergers, went off an IEP when he started middle school, and did fine without it. I think middle school teachers tend to be less fixed in their thinking and more able to deal with slightly unusual kids, because, after all, you wouldn't teach middle school unless you have a pretty high tolerance for kids with a wide range of behaviors, and since most every kid in middle school is going through some changes, our kids don't stand out in the crowd as much. Happy for you all!

Ethel Mertz said...

Tears in my eyes and joy in my heart. Schuyler thriving in Middle School. May it continue. Thanks for sharing.

Julia Roberts said...

I am beyond thrilled to read then and in many ways can relate, but I fell that to tell you now in some way dismisses what a beautiful thing it is to just read this about her and her educators. Who knows what will happen in middle school, but I can tell you, this is a damn good start.

Unknown said...

I'm SO glad to hear that things are going well for Schuyler in middle school! I agree, it can be so hard to get past the worry to look at the good things that are happening today.

Dana said...

This is great to read :) I'm really happy for you guys, and especially for Schuyler. Reading about Schuyler's triumphs validates the (sometimes lofty) hopefulness that I have when I think about Maya's future in school.

Foxxy One said...

I'm all verklempt! I think when neuro typical kids are raised along side of kids with special needs, the differences melt away. If a child has known Schuyler for a year or two, they know she's awesome and fun and that's really all that matters. The more inclusion they have at schools, the less ignorance we will find in the future. Keep up the good work Schuyler!

Stacy said...

SO gratifying to read after her experience in elementary school. I hope it continues.

Becky Burdine said...

What a beautiful wonderful post. I feel like there is so much to say and discuss, but I agree with Julia Roberts. This one is just to be savored and appreciated.

Kim said...

I love this. Love. And want to say, as the daughter of a high school band teacher - a man who has spent 40 years at the same school, building a program where ALL kids can succeed, please, do not minimize the impact her band teacher is having. Music is one of VERY few dual brained activities, and you'll find no greater acceptance for Schuyler than you will in band. I promise you that.

Jackie said...

It made me so happy to read this. As the song says, "Thank goodness for the good souls who make life better." I know - not in the same way that you do - the fear of hope. Hope can be toxic, because it leaves you hanging on for a moment in the future. But when what's happening right this second is good - wow. It's huge. So happy for you, Schuyler, and the teachers and students who get to have your daughter in their lives.

Carol Askew said...

LOVE, LOVE, LOVE this!!! I'm so happy for Schuyler, and so hopeful for Megan that maybe she will have success in middle school when she gets there.

Kizz said...

This, "People are understanding Schuyler's communication." made me cry in the best most, "Whooo, Punkass Brewster!!!!!" kind of way.

Elizabeth said...

Allelulia and fantastic. Thank you for sharing this with us -- inspirational, to say the least.

Anne said...

I'm so very happy for you, and especially for Schuyler! It's wonderful to know that the hard work really does pay off, and I'm inspired by Schuyler's positivity.

Tina said...

I totally understand your cautious enthusiasm! In order not to get overwhelmed, sometimes it's just good to take it day by day (hour by hour...) and celebrate when your "now" is going so well!

Penny said...

This is all so fantastic Rob, in so many ways. Mostly for the faith part and the keep believing part. Everyone needs people in their life who keep on believing in them and Schuyler has you, and hopefully, with all these Middle School teachers, she is building a team of believers. It's so joyous to read this about Schuyler.

Amy Delamaide said...

I'm very happy for you and Julie and Schuyler that there is so much to be grateful for and optimistic about. May the good stuff keep on going.

Sabrina Steyling said...

This post was such a wonderful one to read! It is filled with hope for the future, a future filled with possibilities. I am so happy to hear that Schuyler is doing well and that she is being understood. I am so happy for and proud of her - and proud of her teachers for the life-changing work they are doing in her life!

Ariel said...

HAPPY.

Marla said...

This post makes my heart so very happy.

Anonymous said...

What an inspiring post, and full of hope. Go Schuyler! I'm incredibly happy for you! As a parent of a special needs child, I can so relate to: "But sometimes, our vigilance can stand in the way of seeing the things that are in fact going well, going better than expected". It's easy to get caught up in the things you need to work on, to fix, to achieve... and easy sometimes to lose sight of what actually is being accomplished. Live in today in this very moment, that's what I'm trying to do.

Anonymous said...

I'm glad that things are going well so far! Long may this continue!

How big is the current school in terms of pupils and teachers, compared to the old one? (I know almost nothing about the US school system). Does Schuyler stay with the same class for all her lessons, or do they have academic ability sets?

I'm curious about what's different about the situation that makes her apparently better able to fit in - despite it being a really difficult age!

Anonymous said...

This is so heartening, as an educator who has been following along for a while... personally neurotypical, but physically impaired... the acceptance and the pragmatism displayed is really beautiful (however fleeting it may be) - and the marimba joy? even reading about it felt priceless :)

MNicoleM said...

So happy for you and Schuyler but even more so I'm happy for the teachers and students at her new school who serm to recognize what a great opportunity they have to get to know such an awesome young lady

ANewKindOfPerfect said...

This. It's awesome!

Loves Pickles said...

This is just a YAY post!

Anonymous said...

What a great post! I'm so happy for you and your daughter. My daughter has cerebral palsy and is also non-verbal, and many of the details here remind me of her school situation. One of the reasons we wanted her included in school as much as possible was the benefit if gives to her peers--kids like ours teach them acceptance and communication skills, and in a middle school environment that's a huge achievement!