In the words of autism Mom and singer, Toni Braxton, “They (the doctors) dismissed me. I don’t know if it would have made a difference or not for him to be diagnosed earlier, but they had a ‘wait and see’ attitude. It makes me so angry because a mother knows when something is wrong with her child.”
I’ve said exactly those words, or I would have. You see, my first child had some learning disabilities. That was way back in 1980 and doctors really did have a wait and see attitude. So we waited until she was 5 years old and then I had her evaluated. She just wasn’t meeting those classic benchmarks of communication….and my little brother Billy had similar issues…way back in 1954. And life did not turn out well for him. I was not going to let that happen to my daughter.
Even with an evaluation, it was challenging to get her any assistance. She was that interesting category of “gifted, learning disabled, “ a brilliant, well behaved dyslexic little girl. No problem, no cause for alarm. She’s so sweet and pretty, she’ll do just fine. But back to autism – before I go off on that rant of how schools treat pretty little girls who need special help. Or don’t help them at all.
Anyhow, I was referring to that moment when a parent just “knows” that something is wrong with her child. In my son’s case, I had seen the detriment of taking a wait and see approach. By 2, he was not hitting any communication milestones – no little sounds, words, not much of anything. By 3, I was insistent that he needed to be evaluated. By whom? For what? And with what money?
In those days, health insurance would not cover anything related to disability in a child. Unless your kid had been seriously injured in an accident or had some strange disease which could be medically diagnosed, you had no benefits. You were paying out of pocket, and we were poor. Very well educated, but pathetically poor.
Taking the most formidable resource available to me, that is to say my intelligence, I began to read and then to search for available resources. The doctors had nothing; the schools weren’t sure but maybe there was a screening and evaluation program for “poor” people, but obviously I wouldn’t qualify, because I sounded too well educated to be poor.
After convincing the intake worker that I was indeed poor enough to qualify, an appointment was set. A packet of paperwork appeared 2 weeks before the appointment, a 20 page package asking for every conceivable bit of information about my child and our family history. Thanks goodness for brother Billy and sister Nicole. Their disabilities gave credence to my suspicions that something was wrong with my son.
And thank goodness for that intelligence because, in the age before there was an Internet (when Al Gore was still a young parent too), it took every bit of intelligence to put the pieces together and figure out what would help my son. Which is precisely why I now share any and all of my experience in hopes that I might encourage just one family, help them understand that autism is not a life sentence; it is an opportunity to treasure that which falls outside the box.
Being a student of psychology, I was fascinated by normative behaviors and their importance to social success. As the speech and language therapist, the physical therapist, and the occupational therapist worked with my son, I read everything I could get my hands on about behavior modification, brain based learning, child development. Over time, we constructed an extraordinary team; none of us knew where we were going, but we all believed in the potential of this child, the little Mozart.
I talked to his teachers every day; together we plotted new strategies, examined supplementing his regimen with medication (yes, Ritalin worked very well for him until he reached late adolescence). Over time, a little man began to appear; a sweet, intelligent child who starting using words to communicate and stunned us with his brilliance, especially the fact that he understood all too well the ambiguity of language. “Nice day?” was an opportunity for him to ponder the mysteries and multiple interpretations of nice, or even question if it were really day and not, more specifically, morning.
For me, it was day by day, not always nice days, yet taking joy in small victories….I never looked over the horizon to see what his future would bring. My friend wants her son to graduate from high school; I was amazed when my son did graduate and I could look back at 16 years of struggles and success as together, we were determined to break free.
Freedom, freedom…what does it mean to you and me? Please don’t wait – ask the questions, help your child break free now.
