With the birth of our son we joined the ranks of that undefined, amorphous, limitless group of “special needs parents.” Within the first days of the NICU I knew there would be challenges, but I could not ever imagine the constituency of belonging to such a group. A stat perhaps. A label. A stigma?
The status snuck up on us suddenly. At first, it was the missing of a few milestones and a visual impairment that “surely could be corrected with eye muscle surgery.” We had the best doctors, a scientist grandfather, tons of prayer and friendly support behind our backs. We were invincible. Surely, the head tilt would go away with massage therapy. Surely eye contact could be promoted. I actually convinced myself I could prevent autism by using attachment-building techniques.
Eventually, our baby boy grew up and transformed into a child. And the gap between him and the outside world grew.
We found ourselves limiting his outings, as tantrums became overwhelming and beyond control. We found ourselves walking on eggshells, scheduling all our family days and activities around his schedule and whether he had a “good sensory day.”
The language never came, as we were promised.
There were a few stares from other parents here and there, as if to say “Why don’t you just control him.”
We talked of divorce and of buying a farm and shielding our son from such evils as “bullying,” “child abuse,” and “loneliness”.
One morning I woke up and realized that I was going to a parent support group. And that was that. We were in.
Although the tantrums are just as bad, and the impasse in affection frightening, we belong. There is an army of us, dedicated, traumatized parents, whose children may not smile, walk, giggle, or stack blocks. Parenting books do not capture us, except for just one chapter on “delays.” Parenting advice has to be tailored. “What if I leave him cry in the dark but he is really just unable to tell me that the sheets feel itchy?” we wonder.
It is a rude awakening. To a boundless reality of unanticipated worry, but also to a world of compassion and love like no other. It takes my son twice as long to understand a simple direction as it does my daughter. The public will never bend in admiration at his eloquence and charm. Yet, the few moments where he looks up and flashes a curious smile as we are feeding farm animals are worth a thousand parenting hurdles we encounter every day.
And that’s the truth.