5 foot 3 and rising

It’s late late Friday night (/early early Monday morning) as I’m writing this and feeling. I think we made it through another summer. Monday will be Charlie’s first day back to school, after an extra-long summer vacation: Due to school construction in our school district, summer vacation started extra early and is ending extra late. “That’s his world,” someone at work said to me when I noted how chaotically Wednesday started in our house. Looking back, I’ve realized that Charlie may have woken up early because he sensed that, Labor Day having passed, it was time for him to be back in the classroom—-and then he realized that he wasn’t going and panicked.

Now there’s only a weekend to get through. Charlie is starting middle school. As we learned from a visit to the doctor Friday, Charlie is 5 feet, 3 inches tall (3 inches taller than me); he’s gotten lanky and lean and muscular over the summer, and I’m starting to see glimmers of what he’ll look like as an adult.

Another reason I found reading Dr. Paul Offit’s new book Autism’s False Prophets so fascinating is because the period of time it covers—-1998 to the present—is roughly that span of Charlie’s life. Charlie was born in May of 1997; when Dr. Andrew Wakefield held the press conference about his research on a link between the MMR vaccine and autism on February 28, 1998, Charlie was nine months old. He’d just started rolling over on his own and was not yet crawling (or showing any signs of doing so); he’d been through a terrible bout of rotavirus that left him a long, skinny, sunken-cheeked baby (Charlie had rotavirus for two weeks). In March of 1998, the pediatrician noted that he had “minor gros motor delays” and scolded me for carrying him too much.

By the end of 1998, it was apparent that “something was not right” with Charlie and I groped my way down into and out of denial that Charlie had “delays”; that Charlie had autism. By April of 1998, we’d accepted that “something was really wrong” and started the process of getting evaluations, finding treatments, and reading too many books and websites. I started Charlie on the gluten-free casein-free diet in June of 1998 and started buying and sending away for supplemnts—SuperNuthera, DMG—-in the next few months. Charlie was diagnosed in July of 1998. In September, he began intensive in-home ABA; a few months later, our non-verbal boy was learning some simple signs (courtesy of one ABA therapist who was studying to be a speech/language pathologist) and communicating, and smiling, and running to the window to watch for the therapists.

Over the next few years, we learned about all manner of treatments educational, medical, biomedical, from secretin to HBOT. We tried many biomedical interventions (even buying some pig secretin at one point); we gave up our jobs and moved back to New Jersey from the Midwest; we moved around New Jersey, schlepping boxes and my piano. And here we are today, parents of a tall and lovely boy, not much of a reader, an ocean swimmer, and a fine guy to spend long afternoons and subway rides with.

A Different Life is the name of a Telegraph article today about 12-year-old Billy Tommey and his parents, Jonathan and Polly:

With no autism on either side of the family, they were baffled when Billy ceased to communicate and appeared to be in constant pain. The diagnosis was confirmed when he was two because he showed the telltale triad of impairments: difficulties with social interaction, communication problems, and an extreme need for routine and repetition. That marked the beginning of his parents’ attempts to make life better for Billy, and children like him.

Jonathan’s response was to do everything he could to improve his son’s health by testing and treating the biomedical disorders that contributed to his condition. He put him on a gluten- and casein-free diet, treated various funguses, viruses and bacteria in his leaking gut, and gave him zinc supplements to increase his appetite.

In 1999, Billy became a television star when Trevor McDonald made a programme about him being the first child in Britain to have injections of a pig hormone, secretin, which temporarily improved his functioning. Afterwards, so many parents of autistic children wrote asking the Tommeys for guidance that Polly started a newsletter in which they could share their worries and ideas.

Nine years on, Jonathan Tommey has completed training as a clinical nutritionist and, last year, he set up the Autism Clinic where he has tested and treated 500 children. Some of them have done so well that he now calls regressive autism – autism that is not evident at birth but begins during childhood – ‘a biomedical disorder with a psychological diagnosis’. ‘Some children,’ he says, ‘have improved so much that you could call them recovered.’

Polly Tommey’s newsletter has become Autism File, “a 132-page quarterly magazine with a print run of 36,000, funded by advertising and subscription.”

It’s been “a different life” for us raising Charlie. Like the Tommeys, what will happen to Charlie when he’s older and when we’re older, and then when we’re gone, our everyday concerns. Three years ago, Polly Tommey asked Autism File readers to answer a questionnaire about what was happening to their children as they grew older; here are some responses:

‘My son is nine and the older he gets I feel increasingly despairing about the future,’ writes one mother. ‘These children won’t disappear when they are 16, but I know of no provision for them unless you are very wealthy and can find them good private care.’

‘I have a son who is 21 and has just finished college,’ another writes. ‘I have had to stop work to care for him full-time. He needs specialist help but there is no residential service for people like him where I live.’

‘My daughter is 22 and intellectually able. However, because she has great difficulty interacting with other people, her academic abilities are useless,’ a third says. ‘She has become reclusive and it gets worse as she gets older. She has tried to commit suicide because she is so lonely and unhappy.’

Minnesota writer Ann Bauer has also written about how it’s been much more difficult with her son as an adult. What about housing, what about a job, what about things to do when not working the job, what about transportation to the job and to anything else, what about when Jim and I are gone, what about…..such a long, long list and so often I have to leave the space for answers blank. It’s all question marks; it is, indeed, chaos all over again, an empty vastness of uncertainty about what will happen to my sweet boy. Who’ll know when his stomach is bothering him and sit beside him to soothe him? Who’ll know what shirt of Jim’s and sweater of mine he loves and remember to keep these near him? Who’ll know that he loves California rolls and eel and the color blue; who’ll walk beside him on the long road when Jim and I are not able to?

Well, I really don’t know. I’m trying to figure it out. Charlie is an only child and my only sister has no children. Someday Charlie will be alone.

But do you know what—–on that 95 degree days in Minneapolis when Charlie was officially diagnosed with autism and the social worker and psychologist pretty much gave us the impression, “there’s not much we can do, that you can do”—-I never, not in a myriad of years, dreamed that I’d be enjoying life, a life with Charlie; making trips into New York with him, sharing packs of sushi, swimming in YMCA pools, laughing and just feeling good to call such a great kid my son. I feared the thought of Charlie growing older, bigger, and stronger. He is all of those now, and I have to be able to help him when the rough thunderstorm moments comes.

We took Charlie to see the pediatric neurologist (he’s in Pennsylvania) on Friday. We made a wrong turn on the way and Charlie, sensing our consternation, had ten minute of agonizing anxiety. Jim got him a hamburger right before we went to see the doctor and Charlie easily let the nurse take his vital signs and, when the doctor entered, said “hi doctor” and responded to questions and smiled and said “no” to have his reflexes tested. And looked the doctor in the eye. Charlie’s as tall as the doctor.

Believe me, I never thought that day would come and it has, and it is—far from any awfulness some might have predicted—very, very good, and getting better all the time.