It is one of those things that no one can forget. The words, the actions, the daily routines -- they blur and fade out of memory in time. But the feeling of that very first week in your life after you had been told that your beautiful child, your baby, is afflicted with something too horrible for any parent to imagine -- that bleak, despairing, consuming fear is a feeling one never forgets.
My son was diagnosed with PDD, Pervasive Developmental Disorder, when he was 2. The first time I heard the term PDD, I Googled it and found huge amounts of information that was very confusing at first. One of the words that popped up in every website was "autism." It was a horror I couldn't take in -- I just knew my son didn't have THAT. But in about a week, I had gone from not knowing what PDD or ASD (autistic spectrum disorder) was to realizing that my son's life is going to be very different than most people's, and very different from anything I could have imagined before.
The journey from that black hole of despair into which I fell in the weeks after "the diagnosis," as many parents call that fateful moment in their lives, back into light, took years. It is still underway. It took dozens, if not hundreds of people -- friends, acquaintances, strangers, care-givers, experts, family and most of all, Tal, my son, for me to be able to undertake it without falling by the side of the road.
About two years after Tal was diagnosed, one of his doctors told me, "you should quit your day job at the newspaper and start working with parents." The good doctor thought that since my son was coming along so nicely, I must have had some good ideas to offer other parents. I was flattered, but I rejected the idea completely. First of all, I told myself, she was wrong. Tal was doing most of the work, and I was just there to help him, to give him a leg up where he needed it.
I thought that advising other parents would be very conceited of me. Each child is different, a world of his or her own; I knew that quite well since I was surrounded by younger children -- relatives and friends' children -- ever since I was a child myself. I really didn't like it when caregivers used "one-size-fits-all" solutions and deductions on Tal or myself, so why would I assume that my solutions and ways were good for anyone else? I was also convinced that other parents would see any advice as invasive and irrelevant.
Another expert, a dear woman who was wise and experienced, told me I should write everything down so I can share with other parents. Oh, I don't write things like that, I told her. It's too close to home. When I heard her tell another parent he should write his own experiences, I felt quite let-down. I wasn't special, after all.
So it took about another year for me to come around to this blog, just three years and a few months after Tal had been diagnosed. Why now? I'm not sure. Why did my son, whom everyone was convinced had Dyspraxia (the inability to produce mouth movements in order to speak) for the first two years and eight months of his life, suddenly began to speak one day, with fluency that proved everyone wrong?
Because he was ready? I don't know. He just did, and I just do.
I'm ready now, and if there are other parents, friends, or people with ASD who want to join us here, they are welcome to come along on this really fantastic voyage.
SUBSCRIBE AND FOLLOW
Get top stories and blog posts emailed to me each day. Newsletters may offer personalized content or advertisements.Learn more