So Much Fun (#517)

I mean that title without a shred of irony. It is what I say, what Jim says, when friends and relatives, colleagues and random people in the doctor's waiting room, ask some variation of the "what is it really like to have a child with autism?"

The script that I am supposed to say includes words like difficult, tough, challenging. It includes sighs about how we really don't get out too much and there's so much we can't do and I made all these sacrifices. It includes it's really, really hard.

It sure can be. It sure can't be.

And sure, not every moment every day is exactly suffused with joy, delight, and achievement. I woke up to hear worried cry-whines issuing from Charlie's room; when I ran in, his feet and most of his back were uncovered and I quickly unfolded another fleece blanket and draped it over him. A post-breakfast walk to the train station did not help (when Jim called me to come pick them up, Charlie's voice could be clearly hard, uttering a variety of unhappy tunes). Charlie stayed outside and started to pace the driveway, and then I called him in to practice piano and then to do his activity schedule.

"Ode to Joy. Ode to Joy," said Charlie as we sat on the floor playing a board game (one of the activities on the schedule: Charlie does a series of activities according to a picture schedule all without someone else telling him what to do).

"Yeah, you just played that," I said.

A few minutes later, after glancing over to check what was next, Charlie stood smiling before me, brandishing a Wiggles sketchbook and a set of markers. Charlie has yet to show an inclination for drawing (or painting or art, period) and, after we had both stared at a blank page (except for the Wiggles, Wags, Dorothy and Captain Feathersword in the upper left corner) for a minute, I drew a circle, which Charlie quickly filled in. He giggled his way through assembling some Legos; he waited, and waited, while Jim and I pulled the straps and adjusted the hooks of the bike rack; and he smiled the entire time the two of them rode bikes in the town we used to live in.

That town is in the next county over from where we live now. The terrain is flat and Charlie, having learned to bike up the hills (some very serious) near our house now, found a bike ride in the old neighborhood a proverbial piece of cake.

What a difference a few miles from one New Jersey town to the next can make in the bike riding conditions, or in the school district for an autistic boy. Jim and I often feel the tug of bittersweet when we have gone back to where we used to live, close enough to New York so that the eastern sky is never dark from the glow of city lights, with the stained glass window in the dining room and the beautiful wooden floors---and then I remember how much fun nobody, not us, not Charlie's former teacher, not the aides, not the other kids in his former public school district classroom, not the school nurse, not, most of all, Charlie himself, had. When we lived in our old town of the flat streets and the close-together houses and the five minute walk to downtown, Charlie's every day at school was a weary struggle the school district acted resigned to.

No one was signing "Ode to Joy" then.

All the things that should have made it fun to live in our old town amounted to little because Charlie was struggling so much last year. It is true that, no matter how bad the going got, something good always happened because we had another day with Charlie, but Charlie's deteriorating school situation meant tense and sometimes terrible times for all of us.

No wonder Charlie was smiling as he biked through those familiar, not mean at all, streets. It was a, yes, triumphant return, for a boy who is not the "one who hits his head" and who a whole school knew had trouble. For a boy who makes music, spells out the sign at the new town's train station, seeks out our for help, can look forward to Monday.

"Time to go home now?" we asked when the ride was over and we had visited some of our old haunts (Target, for one).

"Yeszz," said Charlie.

Comments

[melanie]

"The script that I am supposed to say includes words like difficult, tough, challenging. It includes sighs about how we really don't get out too much and there's so much we can't do and I made all these sacrifices. It includes it's really, really hard."

if it is a script, it's not helping our cause, I'm sure. But most days I find that script to be reality, as much as I love my adorable child.

[Kristina Chew]

I know what you mean...... I just really resist saying the script----life is not easy and yet life is extradinarily beautiful with Charlie, pleasure pain and pangs all mixed together.

[melanie]

very true