23 Apr Loving a child with Autism: When will he SPEAK?
This post was contributed by a loving mother of a child with Autism Spectrum Disorder (ASD). It is a series of contributions about her experiences with autism and her amazing son. I’m honored to have her share with us. This is her story…
It’s hard to remember a time when autism was not a part of my life. Writing this is slow and labored. Not only because it is at times difficult to share the deeply personal details of our daily struggles, but also because so many things have changed over the last 9 years, that it’s hard to sharply remember the minute details of the first stages of life with ASD.
My husband and I always knew there was something different – different about the way our boy walked, didn’t socialize, and spoke (or more accurately, didn’t speak). When we officially knew that most of these things were connected to ASD, some of the pieces of the puzzle came together. We were told by his pediatrician that his gait would improve on its own (he’s nine and it’s better, but still affected). “Just wait,” she said. So wait we have. (Yes, I have gotten a second-and third-opinion. She’s right.)
By the time he was four, he had already been in school for two years “socializing” with other 2, 3, and 4 year olds. I tried as much as possible to schedule play dates with friends who had children around the same age. An unfortunate byproduct of the opportunity to socialize with his “friends” and mine was the opportunity to compare him to other children and be constantly reminded that my son had major developmental delays. But the play dates kept coming. They had to. He needed them. Strangely, so did I.
Still, the fact that he wasn’t talking, while frustrating, didn’t really strike anyone as strange. If I had a nickel for every time someone told me their (insert distant relative here) didn’t talk until they were 12, I’d have enough nickels to buy a cup of coffee. At Starbucks! I longed for a time when I would be able to clearly understand his words. I couldn’t wait for the day when I’d pick him up from school and he’d tell me about the events of his school day. Yet day after day, month after month, NOTHING.
He was fluent in gibberish, a special version that no one understood. But inevitably, eventually, I understood the important words and signals he needed to convey to me in order to get what he wanted. In hindsight, as many parents (including those of typically developing children) have done with their little ones, I should have attempted to teach him sign language. I underestimated his ability to learn that language because of the fact that he could not speak English.
At school, his amazing teachers agreed to use my digital camera to take pictures for me, so that I could attempt to initiate conversation about all the things he’d done. Although I greatly enjoyed getting an inside peak at his daily routine, we never really achieved the intended goal. His speech therapist worked with him weekly and gave me tips and tricks to try. We all (especially my boy) worked hard. The growth was slow (VERY) and steady (NOT VERY). Until the day he learned to read. He. Learned. To. Read. He was four! I was amazed. He could read! And then, he learned (ALL) the words to (ALL) the alphabet songs on starfall.com. It was amazing. Still robotic repetitiveand somewhat unnatural, but I was thrilled with the progress. He could read a variety of Dr. Seuss books at all hours of the day. He absolutely loved to read-great news for a mother who enjoys spending time in the thick of a good book. He read all the time. (Except when I asked him to. Except when anyone asked him to. Especially not if I wanted him to read near to his baby sister.) Luckily, our story is full of happy endings. Moments that seemed to nearly break me are inevitably replaced with periods of absolute joy.
The summer after kindergarten, we were given the opportunity to enroll him in the Explorers Camp developed by the University of Miami Center for Autism and Related Disabilities (UM-CARD) and our lives were forever changed. It was like a perfect storm (in a good way). The TERRIFIC (can’t say enough about them) camp counselors, the effect of his forced interaction with his overly enthusiastic, newly talking sister, the commitment of his teachers and therapist, along with some blood sweat and tears of his own, finally led to what I refer to as his “awakening”. For five years, I had watched him move around as if not on this planet, living in a faraway place where I wasn’t invited and could not reach. I finally felt like he was present in our world, more than his own. It would take another 2 years before I would pick him up from school and get to hear how his day went in greater detail, but that summer was the beginning of many significant improvements in his life and mine.
The moral of this story is that you never know what you’re going to get. I don’t think I was ever hopeless, but there were plenty of times when I wasn’t sure things were going to change or get any better. But they did, they have, they always will. How lucky I am that I get to see the development of the remarkable man I get to raise…