I Am A Special Needs Parent

November 2, 2015

I Am A Special Needs Parent

We were diagnosed with autism very early- barely age 2 with a full-fledged autism diagnosis. The toddler years were spent navigating a whole new system of therapies, interventions, the latest news in the growing obsession of “what causes autism,” and doctors, doctors, and more doctors. At every new encounter with yet another medical professional, another therapist, another family who had walked in our shoes we would get the same vague encouragement. “Early intervention will change the entire outcome,” they would say. All I heard at every new evaluation and every new doctor’s appointment was how key early intervention was and that we were on the right path to getting a hint or normalcy back into our lives.

With every year I lost and gained hope at the same time. We saw tremendous strides, amazing progress that brought me to my knees. We raved about his accomplishments from first words to potty training, trick or treating and birthday party successes. Yes we were moving forward but it was and still is at the pace of a snail.
What would have been his first day of kindergarten came and went. He didn’t make it. After nearly four years of interventions and full time therapies, he still was not able to be in a typical educational setting with peers. Our five year old was still very much a toddler by most measurements of development. Not much was said in our house that day. My husband and I exchanged glances before we both broke into tears. We never exchanged a word. We both knew why we were crying.
This event was particularly significant for me, as a special needs parent, because I think this is when I finally accepted what I had fought so hard to push away. Autism, for us, would never go away no matter what we did or how hard we tried.

Over the next few years his behavior began to stand out more and the gap between him and his peers became so wide there wasn’t even a comparison anymore. There were no more milestone charts to show the gap between his cognitive, social, and adaptive development. We had outgrown them. When tantruming in public he was no longer looked over as an “out of control toddler.” Now he was too old and too big to be mistake for a child that young. His vocal stims and repetitive noises began to draw more attention and more unsolicited advice from ignorant strangers (thanks but no thanks!). He grew too big for me to physically restrain or pick up.
We are now knocking on the door of his eighth birthday, six years after an official autism diagnosis. Six years later and I’m finally accepting the defeat. I am letting go of the unrealistic expectations and living in what is. Perhaps I was too young and too naïve to believe that my two year old would never fall in line with typical peers. I thought he just needed more time, but I was the one who needed more time.

I am a special needs parent. I am not surrendering, I am not giving up hope, and I am certainly not giving up on my boy. Yes we still spend thousands on therapies and interventions and we are constantly seeking new medical professionals that can help shine light on this very mysterious and complicated neurological disorder, but I have accepted the fact that autism will forever live in me just as it lives in him. I have accepted that the same hope I had when he was two- years old has evolved- and that’s okay!

I am a special needs parent and I am learning to trust this journey even when I do not understand it.