“G” celebrated her 11th birthday in December. When she was born her life seemed so full of promise. We think that about all our kids don’t we, that they can be anything they want to be. I was always one to say, “I just want my kids to be happy,” but truth be told I DID expect more than that. Deep down I guess I expected the children I brought into this world to be “good” people, productive members of society, contributing to their community, wherever that community was.
Many children with autism develop normally, and somewhere around 2years they start to regress. That was not the case with G. She never developed normally. By the time she was 9 months old her pediatrician referred us to Early Intervention because she was failing to make physical milestones. She did not roll over, she did not grab for toys or interact with them. The pediatrician said, “Her legs are like jelly.”
By the time G was 11months old she was receiving physical therapy (PT) and occupational therapy (OT). Months and months and months of both, listening to her cry as the therapists would try to get her to move her body when she was content to just lay there and stare at things. MAKING her crawl against her will, MAKING her catch herself when she would start to fall (she had no protective instincts). Then later on speech therapy (ST) was added because she wasn’t talking, wasn’t even able to chew food properly and would gag on everything (she would eat baby food till she was 3 1/2 years old). Developmental therapy (DT) too, to try to teach her HOW to play with toys, and interact with her environment.
Her neurologist suspected she might have a mitochondrial disorder. Think “Jerry’s kids” and muscular dystrophy. We had to take her for an MRI and eventually a muscle biopsy to rule this out (or confirm it). SIX WEEKS to wait for the results… negative. Then there was the 48hour EEG visit to the unit at the hospital where they monitor for seizures. G would do this weird thing where she would roll her eyes back in her head and “zone.” That test too was negative.
When she turned three, she graduated from Early Intervention and was sent to a full-day, five day a week, special needs preschool, and a whole new journey would begin there…
Now I have revised expectations for what G is capable of in her life, and I have learned a thing or two about myself in the process. My main goal is still for my children to be happy. But while I always believed that even the least among us offers something to the world (that’s what Christ teaches us after all), now I believe it on a cellular level. G IS a “good” person, she WILL contribute to her community, she WILL be a productive member of society, just not in the most obvious ways. She is awesome, and I am proud to be her mother.