An open letter to autism-free 'advisors'
A mother with autistic kids gets a lot of unsolicited advice at times.
Saturday, July 28, 2012 - 16:56
Photo: Karla Akins
A mother with autistic kids gets a lot of unsolicited advice at times. I can't tell you how many times someone has said they've watched "Rain Man" so are an expert on the subject. There have been days in my life when I wanted to hand people a letter, or wear a sign that says something like the following:
Think you know a lot about autism?
Well, here's what you don't know:
You don't know what it's like accompany twin boys with autism to the doctor, to have your arms ache with fatigue from two strong-willed, physically powerful children pulling, tugging and fighting every step you take. You haven't experienced the humiliation of judging eyes glaring at a store, at a restaurant, a family reunion.
You weren't there to experience the horror of watching four male nurses wrap your 9-year-old up like a burrito and hold him down to remove a splinter from his foot, to give him a shot, to start an I.V.
Have you ever driven three hours to get to a specialist's appointment with two kids with the stamina to scream all the way there? What about a full night's sleep? Enjoy those? Then you have no idea what I went through each night as my babies rocked themselves back and forth, banged their heads on the wall, tore up their beds so they could sleep under their mattresses, and how my body never relaxed because the boys' safety was always a concern.
Ever been to a hotel overnight with a pair of autistic twins who are screaming because they are scared to death because they don't know where they are? Ever gone to a restaurant and have your children lick the floor, sniff someone's shoes, pull another person's hair?
If you don't know what it's like to go for days without showering, to never eat an entire meal uninterrupted, to never sleep for an hour straight, you have no right to judge my walk with autism. You have no right to point your finger and claim that you would do better. That "all those children need is a good spanking."
If you can do better, then why don't you? Why don't you call and offer to watch my children? Help me with my housework?
Walk a mile in my moccasins. Then you can point a finger. Then you can give me advice.
But until then, keep your thoughts to yourself. I don't want to hear them. You haven't earned the right to advise me until you've the courage to walk beside me, changing the diapers of an eight-year-old, longing to hear "Mama" spoken, wishing for a "regular" Christmas.
I have no interest in your so-called wisdom until you have endured all these things, too.
What I am interested in, what I do long for, is a compassionate friend. A friend who will listen. A friend who will encourage, not judge. A friend who will hold up my feeble arms, and give my head a place to rest.
These you can give me.
These are what I need the most.