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Apr 06 2014

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A Must Read For Autism Month

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April is Autism Awareness Month

I’m guessing you already knew that.  This is the month of the year when those of us most directly impacted with autism get asked the most questions.  I’ve written quite a few posts about it myself:

1.  Another Reason We Do What We Do As Autism Parents

2.  Big Red Safety Boxes

3.  Catholic Charities Commercial

4.  Making A Man of Jake

5.  What’s He Thinking?

6.  Are You Aware of Autism?

7.  We Want Our Son With Autism Back

8.  Autism Perks

9.  Jake’s Headphones

10. Making Our Way: Autism 2nd Anniversary

These are just the first ten I thought of when looking back through my list of past posts.

Every once in a while, I find something truly spectacular.  Katherine Sanford, of katherinesanford.com has written an eloquent and heartwarming/breaking post about being part of the ever-less exclusive club of those affected by autism.  If the prevalence rate of having a child with autism is 1 in 68, and kids come from two parents, doesn’t that make the parents 1 in 34?  This is what Katherine posits, and I have to agree.

Here is her post:  I copied and pasted it, because I couldn’t find a direct link from her website.  I have her permission to share, and again – the following are her words, not mine.  They are powerful, and brought tears to my eyes, because so many of these 1 in 34 “criteria” ring all too true in the Whitehouse household.

From katherinesanford.com:

1 in 5 Americans has a tattoo
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.

If you know how any of the above feel than you are a member of the 1 in 34 club. It seems to get less exclusive every year. There is no secret handshake, or tennis whites. No one wants to join this club, and once in, you are a member for life.

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.

PuzzlePieces

About the author

BigCalfGuy

BigCalfGuy

I am a 39 year old, married, father of three amazing children; one of whom has autism. I fancy myself as more Atticus Finch than Holden Caulfield. Dynamite with a laser beam.

Permanent link to this article: http://www.bigcalfguy.com/a-must-read-for-autism-month/

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