Ashlyn was two when I received the results of her first developmental screening. Her fine motor skills where that of a 6 month old. Her gross motor skills registered at barely 9 months of age and her verbal skills tested at under one year. I knew shortly after her birth that something wasn’t right but I didn’t realize how wrong it was until the results were staring at me on paper.
I was a young, single mother and I immediately began doing the math and calculating her future success. At age six would she be stacking blocks instead of learning to tie her shoes? At eight would her speech struggle to be that of a four year old? Would she ever be able to write her name or ride a bike or tell me her favorite color?
I tried so hard not to read those reports over and over again and fear for her future but I had always been a numbers person and her probabilities for success were not looking good. As parents we all have hopes and dreams for our children’s lives and all I could conjure up was a black hole of uncertainty.
Ashlyn’s life was already full of weekly physical and occupational therapy and then we added in a developmental consultant and topped that off with recommendations for an early start to school in a special education classroom. The rational part of me knew this was for the best but the part of me who envisioned story time at the library and carefree days at the park wanted to fight the schedule we were slipping into so early in her life.
A few years and several hundred therapy and doctor appointments later Ashlyn she received an autism diagnosis. (This was in the late 1990’s, if it had been today I’m sure she would have been diagnosed much sooner.) I remember leaving that appointment numb from the news. I had finally adjusted to my “new normal” of managing a child with developmental delays, cheering for small victories and being so, so thankful that she could finally speak. Hearing such a final diagnosis, one that she wouldn’t be growing out of with a few extra visits from the speech therapist, felt like staring right back into that black hole.
I worried all over again about her future and what this new label meant for life as we knew it. Had she already reached her full potential? Would she ever have friends or learn to drive or live on her own? I felt the panic of our early days rise again.
On the eve of a yet another appointment to get her latest developmental results, a wise friend told me to remember that no matter what the latest scores and experts say, my daughter would be the exact same person after the appointment as she was before we walked in the doctor’s office door. I’ve taken that advice with me through the years and years to follow. I don’t read the scores and calculate their trajectory into our future anymore. I look for smiles and laughter to measure her progress. I seek out people to work with Ashlyn who belief in her success and thrive on her happiness (this is easier said than done).
She is 22 now, 20 years older than she was when I used several pounds of tissue to cope with her first developmental screenings. She walks and talks and when she laughs her whole face lights up. We have okay days and exhausting days and some when you could almost forget her diagnosis exists but mostly we just have acceptance of where she is right now. This is her life, this is mine and it can’t be measured by anyone else’s scale.
Happy World Autism Day to the girl who’s still teaching me lessons about the world.
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