The Road

Every morning, a little bus comes and takes away my heart.

It’s the short bus, of course, and while it remains a visible manifestation of all the jokes and the snickering remarks, it is also a very fine bus.  It looks brand new, and I suspect that it’s a more comfortable ride than most of the sun-bleached full-size buses I see rolling around town.  Keeping up with advances in transporting broken children means nice new buses.  It’s one of the few unintentional benefits of disability that my daughter enjoys, and enjoy it she does.

Schuyler loves the bus.  She always has, ever since she first began riding it five years ago.  Every morning, she runs out to her bus without hesitation, and only grudgingly waits long enough for the hugs and kisses that her parents require.  She climbs on board, gives her familiar bus driver a high five or a fist bump, and settles in.  We stand outside, waving to her like fans of a movie star, until the bus fades from our view.  To her credit, Schuyler almost always waves back.

The bus is a constant, from the days when she first began attending school in this town, but this year, it’s one of the few things that haven’t completely changed.  Schuyler has transitioned to middle school, and her world has been turned upside down.  That sounds like a very terrible thing, but it’s not necessarily the case.  Unlike a lot of kids with special needs, Schuyler does not thrive on routine.  Hers is a life in which there are no grooves, only ruts.  Elementary school presented some challenges for her that simply came from the sameness of the hours, hours stretching into long days with little change, years with new teachers of varying ability but similar experiences.  Middle school has changed all that.

Schuyler is enchanted by the newness of the experiences, but she is also in danger of being overwhelmed, like a boat riding out rough seas.  Her new routine requires a great deal of self-direction, which she cherishes but doesn’t quite master.  Accommodations abound.  Her fine motor issues make her locker a challenge that she can overcome but only with difficulty, and requiring more time than she has between classes.  So a teacher rigs the locker so it is always unlocked. When her backpack forces the now unlatchable locker door to fall open, it is arranged that Schuyler will keep the overstuffed pack in the special education director’s office.

The SpEd director understands my little girl.  Over the summer, she read my memoir about Schuyler’s early years, and while the tall, “talkative” (amazingly so for a non-verbal kid) and independent pre-teen who works so hard at “passing” in a neurotypical world bears scant resemblance to the ethereal little girl depicted in the book, it still gives the director a deeper perspective on Schuyler.  I feel as if I’ve written something like an operator’s manual for my daughter, but we live in an Apple world where no one likes to read the manual.  I appreciate the special education director’s effort.  She strikes me as someone who’s going to advocate hard for Schuyler.

Middle school presents a lot of opportunities for teachers to get Schuyler, which of course means an equal number of chances for them not to.  Schuyler has four mainstream class experiences (if you count gym class, which in many ways is probably the most complicated neurotypical science experiment of all for her), and she’s holding her own in them all, although only barely in some.  One teacher works closely with Schuyler’s aide, who is also a certified teacher, and the positive results are clear.  Another teacher actually tells me in a phone conversation that because that other aide is a teacher and not a regular assistant, Schuyler actually has an advantage (the word “unfair” is unspoken but lingers quietly in the air nonetheless) over the other, neurotypical kids in the class.  I don’t mention that these kids have always had and will always have an advantage over her.  Her advantage is created by the school, after all, while theirs is created by an inscrutable God.  And you don’t want to complain about that guy too much.

Schuyler’s in band now.  She plays percussion, mostly because while you don’t see much evidence of it when you look at her, aside from occasional drooling that she hides pretty well with the use of punky skater wristbands, Schuyler has facial muscle issues.  Wind instruments are out of the question because of that, and string instruments are too complicated for her long and delicate but fumbling fingers.  And choir?  Schuyler can’t speak; she depends on a speech device, some sign language, garbled verbalizing and mad miming skills to communicate.  Choir’s out.

So she plays in the band, but it’s becoming a challenge for her.  Schuyler is developmentally disabled, and whether that means she’s a slow learner (as I believe) or has limits that we may reach any day now, the fact remains that her beginning band class moves, by necessity, faster than Schuyler can keep up.  The director seems to really want Schuyler to succeed.  She also seems unsure how to make that happen.

I wish we could help.

The truth is that we know Schuyler best of all, but we don’t always know how to make things work for her.  We overbelieve, but we overworry, too.  And when I allow myself to release my clutching grip on my fear for my little girl, I can see how maybe she’s okay.  Maybe the new faces and the new routines, the hundred little things she’s expected to do and the half or so that she actually manages to remember, the new dedicated teachers and the new distracted ones, all of it; maybe it’s all for the best, and being challenged and stumbling a few times or even a great many times will help her grow into the independent and happy young adult that we can scarcely imagine but continue to give our every ounce of effort to help make real.

In a few minutes, Schuyler will get off that same short bus.  She’ll run excitedly to the door and knock on it, for no other reason than to make her idiot dog bark madly.  She’ll take out her key, the one we gave her in case she ever makes it home before we did (it’s happened twice, and both times, she’s reacted as if she has defeated us in some strange race), and she’ll try the door.  I’ve locked it like I do some days because she loves the feeling of letting herself in.  She craves independence, and so we give her as much as we can.  As much as we dare.

I must go now.  The bus is delivering my heart back to me.  It’s the very best part of my day.