Autism-World

Everything Else Vanishes

By Christina Adams

Christina Adams is the author of A Real Boy: A True Story of Autism, Early Intervention and Recovery. Her work has appeared on NPR and in The Los Angeles Times Magazine and Brain, Child Magazine.

Life was normal for my son for a time, and then it wasn’t. The bright, social 15-month-old who charmed his pediatrician with his curiosity and skills turned somber, spent his time alone and became obsessed with water and vaccuum cleaners. I didn’t know why, didn’t know that at nearly three years old he’d be pronounced autistic. He wasn’t one of those kids, the ones who eat only french fries and milk, won’t sleep, scream when their shirt tag grazes the back of their neck. He was just a bright child who was a little “different,” and then suddenly, he was hand-flapping and walking in circles. While I was still dreaming of his future, my lovely, talkative baby slipped away.

Then I found out why–and like every other parent, I was terribly afraid. I was swamped with medical terms and dismissive doctors. Other parents offered me the salvation of information, but then I faced a giant spinning Lazy Susan of diets, medications, supplements, and expensive therapies. Plus, most day-care providers kick out kids on the spectrum–mine got kicked out of two schools in two months—so I’d pretty much hit rock-bottom. I dropped the novel I’d just written, stopped my other work, and began the full-time job of rescuing my son.

Naturally, these circumstances make it hard for “autism moms” to work. ” ‘Parent of kid with autism’ is their primary–and unpaid–job,” says Peter Gerhardt, president of the Organization for Autism Research. “Nearly 60 percent of moms of kids with disabilities are unemployed; between 10-20 percent of fathers, too.” When a mother becomes Autism Super Mommy to rehabilitate the child, she faces criticism from all sides. “The office says they understand, but they want you to work, while the therapists recommend that you quit,” says L., a married senior executive who relies on caffeine, a cell phone and a nanny to run her life — and who cannot quit because she makes the bigger salary.

You do what you can. Many moms, like I once did, even run 40-hour-per-week in-home therapy programs, cook food without dairy or wheat and see multiple doctors and clinics. Before the week even started, my assignments were overwhelming. Once I got so stressed from the paperwork and unrelenting schedule that I couldn’t breathe and had to see a cardiologist for chest pain. Still, I was lucky my child got treated while I was married and could stay home—although I’m now single. Autism can tax your marriage, too.

Treating autism is about money and time–lots of it. Even if someone takes your child to therapy–after you find and schedule the therapies—he needs full-time help with speech and social skills. My son and I built his language word by word, from breakfast table to bedtime story, which helped him become the gifted conversationalist he is today. Truth is, if not for autism, I’d probably have two published novels and be a college professor, and I try not to think about my income and Social Security earnings. But any autism parent would shove their career away with both hands for the chance to talk with their child.

Still, autism – like motherhood — can give you magic powers. I learned science, law, therapy and advocacy; I became fierce in the pursuit of justice. Last year, when my knees nearly buckled in the sedate hallway leading to my first divorce lawyer appointment, I whispered to myself, I can do this: I am an autism mom.

I have friends who handle full-time careers well; others have gone part-time, while some will never return to work. Most moms, after their children recover, hit a middle ground, or stay very disabled, eventually reclaim parts of their previous lives–and this can include work.

Still, for autism moms, our child is our life now. We watch the beautiful face that often hides a brilliant mind, the face of the boy or girl who loves us more than anyone, who gives us more pride and struggle and agony and reward than a paid job ever could. This is our work. Everything else vanishes.

This entry was posted on Saturday, March 31st, 2007 at 12:18 pm and is filed under Parent Resources.