[Editor's note: As Autism Awareness Month draws to a close, and with it its usual skew toward sugar-coating and euphemism, we bring you this sober reflection on autism parenthood by Bay Area autism mom Katherine Osnos Sanford. You can find her at katherinesanford.com.]
1 in 6 has light eyes
1 in 13 has food allergies
1 in 30 has red hair and freckles
1 in 50 has an artificial limb
1 in 68 has Autism
My daughter is 1 in 68. The CDC recently released numbers saying that 1 in 68 children are Autistic. Each one of those children has two parents who also carry that diagnosis with them, always. Does that make me 1 in 34? I think it does.
In every house, in every child, in every family, Autism looks different. But if you are a parent of a child on the spectrum, no matter where they fall, there is some common ground. I know you when I see you; we walk the same path lined with eggshells, and potholes, but it’s ours.
Below is a list that anyone in the 1 in 34 club will recognize. You are probably a member of the club if at least a few of the below ring true:
- If you have ever wondered whether your child will have a friend.
- If your child has never told you about their day.
- If you know what “stimming” means.
- If you know what two or more of these stand for: IEP, PPT, SPD, OT, SLP, ABA, BCBA, EEG, GF, CF.
- If you know what “scripting” means.
- If you wake up at least once a week and wonder who will take care of your child after you die.
- If you have ever spent an entire meeting talking about eye contact.
- If you look at a package of diapers and wonder what happens after your kid gets to 50 lbs.
- If you know what “fecal smearing” is.
- If your first thought when invited to a family gathering or neighborhood barbeque is how you can graciously decline.
- If an advertisement for a parade or fair, makes you think, “that sounds loud.”
- If going to a restaurant or a movie as a family isn’t something you do for fun, ever.
- If when you enter a room, your first thought is, “what will my child climb on in here?”
- If the question “how old is she?” makes you uncomfortable.
- If you count your money in hours of therapy instead of years of retirement.
- If the sight of a 16 year old flapping his hands and bouncing on line at the grocery store makes you smile and cry at the same time.
- If you know that milestones have nothing to do with age.
- If you know that there is nothing better than an ordinary day.
- If anyone has ever said to you “I don’t know how you do it…”
- If you never wonder what you are made of.
I look at my daughter and she has taught me so much — a whole new language, even though she doesn’t speak. She is fierce, and bright, and beautiful. She is unconcerned about social pressure and will never wonder if her outfit makes her look fat. She is completely clear about what she likes, and is uncompromising in her pursuit of it.
On her behalf, I have become someone I never thought I would be. I am difficult. I ask too many questions. I disagree with people even when they are doctors. I have cried in public. And most importantly, I have learned that you don’t love someone for who you thought they would be, or for what their future may hold. You love them because they are yours, because even if they are 1 in 68, to you they are 1 of 1 and you cannot imagine your life without them.
Copyright 2016 Katherine Osnos Sanford