Perfect Baby

… based on a post from May 2015
As a parent it’s a gift when you stop thinking in expectations and stories about your child. When you do, children can be perfectly themselves.
Our son was born perfect, our one and only. Our Little Prince. With smooth and shiny black hair, long and tall, in an Italian baby jumpsuit from a friend, he looked like The Little Prince, or a Formula 1 race car driver minus helmet. My Little Einstein, with intense “concentration” on books, sheet music, or atlases. My Little Mozart, hitting the exact note on the piano that a whale in a TV documentary had just sung.

We measured height against a chart, but knew no yardstick for his language.  By age 2 he had said some odd words clearly (garden, Jello, donut). But he was mostly silent, and each accurate word was never spoken again. We didn’t know that a typical toddler babbles many syllables and sounds and word-like approximations all day. Remembering my childhood, I showed him “phonics” (“Buh buh buh buh “Bus” “B!”), letters, numbers, and sight words - at home and on signs outside.

What is the Diagnosis?
His full list of developmental disabilities were clear around ages 3 and 4. For years, the diagnoses were mysterious. Now they roll off my tongue now without flinching or stammering.
In 2000, he was diagnosed on the newly-rechristened “autism spectrum. “ His conditions were “static” (not getting better or worse) and “congenital” (from birth and not regression). Along with that were: severe verbal and facial apraxia and fine motor ataxia, limb apraxia, (overshot with one hand and a volitional tremor in the other), motor planning difficulty and dyspraxia. His health and life were made difficult by discomfort from ulcers, food allergies, impactions, incontinence from the impactions, and eventually PTSD.

I tried to imagine what would come for our child and ourselves. My worries were not as tough as our challenges turned out to be. But my hopes were less than what he is achieving. My love would see him through.