I Don’t Feel That I Suffer

Thanks very much to everyone for watching the Good Morning America piece on Controversial New Movement: Autistic and Proud—-Activists Say Stop Looking For a Cure and Accept People As They Are, and for everyone who’s commented here—a lot to think about, and then all the commentary on the ABC news story. Some more commentary ’round the blogosphere is at Crimson Thoughts (more on neurodiversity); Stop. Think. Autism on being autistic and proud; Estée Klar-Wolfond on Diane Sawyer’s comment about acceptance as a “beautiful way of justifying heartbreak”; Patricia E. Bauer also on Sawyer’s closing comment; and a few more blogs here, including one by a fellow autism parent in New Brunswick (Canada).

I was fortunate to be asked to be interviewed and got to hear all of Ari Ne’eman’s interview, too. I especially appreciated the respect the crew showed for Charlie’s privacy; while it was not as hot last Monday as it was this week, more than a few of us felt like jumping in that pool with Charlie.

I was very glad that the footage of Charlie in the pool—-his natural element—-was included. He loves to jump in with a big splash and he can swim a powerful stroke. In some of the segment, you can see Charlie with his hands over his ears and his head down: On seeing this, Jim and I realized that, to an outside observer, Charlie might look like the stereotypical autistic child, shut out and withdrawn from the world into himself—-”kidnapped,” if you will, “by autism.”

Throw in a bit of a “neurodiverse” perspective and, as I understand Charlie from having spent most every moment and minute of the past 11 years beside him (plus those 9 months when he was in utero……), Charlie had his hands over his ears for a kind of filtering effect, to screen out all the sounds and sensations around him, from new human voices to the soft splashing of the water to the smell of the air around the pool. He was trying, indeed, to hear better, and figure out what in the world was going on, with me dressed in a nice skirt instead of a swimsuit and a strange man following him around with a camera. Charlie knew very well that something was up, but (as he often does) he aired his responses in his idiosyncratic way, hands over the ears and head down. At the last moment, he climbed up on the diving block, stood still and looked around, and jumped, and swam.

Seeing him swim has always more than raised my spirits. Charlie has plenty of struggles on land, in the classroom, at his desk. I found it jarring to see a shot of Charlie in the pool on Good Morning America while the words “severe autism” were said. When people ask what Charlie’s diagnosis is, I just say “autism”—that is what was written on the report we got back in July 1999 from the Child Development Center at the Minneapolis Children’s Hospital and that has never changed through many more evaluations and IEPs and social service and other forms. Without the years of education, I suspect that Charlie would be “severe,” would possibly not be able to talk, might be in a residential placement.

We had a chance to celebrate Charlie’s educational achievements Tuesday: It was the “moving up day” ceremony for the fifth graders at his school. They had a dance with a DJ and some raucous macarena-ing and chicken dancing planned; the other parents in Charlie’s room and his teacher, and I, agreed that this might not be the best way for our kids to celebrate their accomplishments. Our class mom planned for a little ceremony.

I came early as it was Charlie’s last cello lesson. The music teacher’s room was not air-conditioned and we carried a music stand and the cello back to Charlie’s classroom. With his classmates bouncing on an exercise ball, reaching for the cello strings, and running back and forth as the mothers set up the party, Charlie plucked and bowed and the teacher and I talked about how to teach him to start pressing his left index finger on the strings to play more notes.

Charlie had woken up late (that is, I had woken up late on Tuesday). He had less than 15 minutes to get out of bed, get dressed, get his backpack, meet the bus. We used to half-carry, tug and pull him out of bed but the time for this is passing. Tuesday morning, when I called Charlie to get up and reminded him about the party, he had opened his eyes, pulled himself up, stomped out to get his shoes on, and clomped down the stairs just as the bus was pulling up. “Cake, party,” he had said as he got on the bus and he repeated those words as I put away the cello and Charlie dutifully donned his paper graduation cap.

Charlie’s teachers told me that he had been asking for the party all day and been told he had to wait till “2 o’clock.” It took a bit longer for achievement certificates to be handed out and photos to be taken: Charlie sat quietly beside another student, kept his hat on, and said “no” to bowls of pretzels and cheese puffs. Finally it was time to cut the cake…….let’s just say that a lot of frosting got eaten and I discovered that, like my late Uncle Quonson who Charlie is the spitting image of when he smiles, Charlie likes the corner piece because it has the most frosting.

The gifts for each teacher, therapist, and instructor (aide/paraprofessional) were photo albums with photos of each boy and messages. And Charlie’s teacher had made each boy an album of photos from the year: Halloween, making vegetable soup, Charlie getting piggy-backs from two really tall instructors, reading, computer, playground, Charlie’s birthday, a cello lesson, the five boys in front of their school.

At one point on Good Morning America I said “I don’t feel that I suffer” and I don’t. I’m not suffering because I have an autistic son: My son is starting middle school, but he will be in one classroom with one teacher and several instructors and won’t be learning to navigate the hallways to get to science before the bell rings.

I have my worries: This was the year that Charlie grew taller than me and I won’t ever again be able to scoop him up in my arms and carry him away from the hostile glare of a stranger and to safety in the form of the blue Graco carseat that he loved so much and used to carry into the house and sit in, right by the door. I’m not suffering though I know there are days, times, and moments, when Charlie struggles deeply to express himself and just to be. I’m not suffering because I’m the mother of an autistic son.

More than anything else, there’s so much to be happy in and even to celebrate, love, and gently accept.

Charlie made it to middle school.

Charlie is talking more than ever—as this weekend’s you know you have the answer attests.

Charlie’s doing good and, thanks to him, I am trying to do so, too.