The first developmental pediatrician handed me a bunch of pamphlets with no real explanation. One heading said hyperlexia. Another was auditory processing disorder. Then there was one on sensory processing disorders and two on Asperger’s Syndrome. The second developmental pediatrician we visited gave me one paper. She said, “Your son has autism. He’s high-functioning, but he will, as he does now, have challenges.” What probably took only a second or two to say, took hours for me to process. I heard her and believed her. The first pediatrician couldn’t decide which disorder fit best. She gave me papers to take home and seemingly wanted me to decide on my own. In any case, my son having any diagnosis did not sit well with me, but having one that I was unfamiliar with made it worse. I was full of questions. What is autism? What do you mean “there’s no cure?” How will he get better? Will he get better? What kind of help does he need? Now 10 yrs later after his diagnosis, those aren’t the only questions I needed answered. I needed someone to tell me how to communicate with my son (who was nonverbal until he was 4) and how his meltdowns meant he was trying to tell me something and not that he was bad. I needed someone to tell me how hard potty-training would be but how rewarding it would be when he learned at 6. It would have been nice if someone mentioned that anxiety and fear would become my hat and coat I wore each day when I took my son to school but would still be my wardrobe for every transition or change he has had to make – no matter the location. I needed to know that my son scripting upon hours and hours was called echolalia and anything I had to do would be put on hold. He needed an audience for someone at the end to say “encore!” And I needed to know how to clone myself so I could be a support system to not only my child with autism but to my other 3 boys who needed to know they were loved, cared for and special too. Ten years later, there are things I wish I could have been told. However, experience has taught me more than any book could have. And because each child with autism is different, the developmental pediatricians probably could not have foreseen all of this coming. So life for me has become a whole lot sweeter because we have had to learn as we go. My son is 12 and I still have lots of questions, but it’s our journey. . .and we’ll continue to learn as we go.
Thanks for listening,