I typed something I thought might be poetic.
And then I deleted it all – one letter at a time.
It was a story about a house on Autism Street – I thought a pretty little metaphor might make it easier to say.
The truth does not always fit into pretty metaphors.
My Brooke’s autism – our family’s autism – is a fact of our lives. It challenges each and every one of us – none more than my baby girl.
We walk a high wire, arms out, heads up. We search for our footing; we fight for our balance. We scan the crowd. We seek compassion. We sniff out pockets of understanding.
We hound the experts; we beg, borrow and steal the tools for our girl to live the fullest life she possibly can. We pray for acceptance. We try our damndest to celebrate what we have the luxury of calling her differences.
It isn’t easy. Not by a long shot.
But our neighbors on Autism Street live vastly different lives.
They live in houses where autism is about survival. Where there are no words. Where connection, engagement, a momentary, fleeting interaction is everything.
Where constant vigilance takes its toll. Where sleep is a precious memory. Where children growing up and growing stronger is terrifying.
Where tempests brew without warning and siblings are versed in self-defense. Where psychotropic drugs are a necessary evil. Where cabinets and pantries are secured behind lock and key. Where seizures are constant. Where skills once mastered vanish with the wind. Where potty training happens – again and again and again.
Where children vanish in the blink of an eye – wandering into the world armed with superhuman coordination, uninhibited by any sense of danger.
When we host a block party here on Autism Street, we’re reminded that our high wire act is really awfully quaint.
We need compassion, understanding and the tools to teach our girl to fly.
Our neighbors need HELP.
The need it NOW.
They need answers.
They need services for these kids – for themselves. They need a place to turn. They need a strategy – short-term, long-term, the distant future. They need a break.
Too many of them are living under siege.
To those of you who read Diary without a further connection to autism, I am grateful. I beg you though, please, please always remember as you read …
Our autism is just one house on the block, not remotely representative of its neighbors.
Our friends need help.
And by God they need it now.