Sensory Processing Disorder is Real: “Knowing Is So Much Better Than Not Knowing”

Editor’s Note:

The New Republic’s recent article, “Is Sensory Processing Disorder A Real Medical Condition,” has sparked quite a dialogue in the parenting blogosphere. Despite the controversy (is SPD “sheer quackery”?), I’m happy for the awareness the discussion is bringing to the very real, very heartbreaking, and very treatable medical condition that so many people – children and adults – suffer from. 

I’ve written about my journey as the mother of a child with SPD since I began blogging almost four years ago, and I’m compelled to wipe the dust off some old posts for any parents out there looking for insight, understanding, connection, and a reminder that you are not alone on this winding and difficult journey.

I’m not an expert on SPD, but I am a Mama.



Knowing Is So Much Better Than Not Knowing

(originally published on October 10, 2011)

My friend’s son had chronic ear infections when he was a baby.  The build-up of fluid in his ears got so bad that the doctor recommended inserting tubes.  The day they brought him home from the procedure, he watched Elmo on television and laughed.  That was when my friend realized it was the first time he actually heard Elmo’s voice.  The infections had affected his hearing and she didn’t know.

My friend told me this story the day Dylan was diagnosed with a sensory processing disorder.  I was drowning in guilt (and tears) for not doing something sooner and she reminded me that it happens to all of us in some way or another.  A few weeks later, I still feel like the Guiltiest Mama that ever lived, but I’m also finally starting to realize that Dylan’s diagnosis is the best thing that ever happened to me as a parent.

Good parenting requires love, patience, understanding, and all that good stuff. It also requires an insane amount of confidence. You have to know exactly how you want to raise your children and then you have to go about the work of doing it every single day. Without wavering.  Without worrying about anyone else’s judgment.  And most importantly, without second-guessing yourself.

Somewhere along the way with Dylan, I lost my confidence.  His fears and anxieties, panic attacks, and overly stubborn behaviors with food, clothing, and noise stumped me.  I didn’t know whether to push him or pull back.  Expose him or protect him. Hug him or punish him.  I didn’t know why he acted and felt the way he did – and here comes the confidence killer – I thought it must have been my parenting.  I thought it was my fault.  Now I know it’s not.

We went to a birthday party at an indoor gym yesterday afternoon and if a group activity included big jumps or forward rolls, Dylan sat down with me.  There was a time when that situation would frustrate me and make me wonder why he wouldn’t try new (fun) things, why he didn’t want to do what his friends were doing, and now for the guiltiest thought of them all, why he wasn’t normal like the other kids.  Now I know, and let me tell you, knowing so much better than not knowing.

Now I know why he doesn’t like to be upside down, why long-sleeves, pants, and bounce houses cause panic, why Operation Chicken was destined to fail, why the sound of lawn mowers and owls hooting made him afraid of his own backyard, and why his teacher asked if he had a hearing problem.  Now I know.

Ear tubes fixed my friend’s son, and OT will fix Dylan, too.  Some of his most unique attributes, like his emotional intensity and charming absent-minded professor-like way, are partly a result of his sensory issues.  But I’m not worried about the therapy taking any of that specialness away.  When Dylan woke up yesterday morning and I told him we were going to the birthday party, he looked at me with his big, bright morning eyes and said, “Wait a second, Mommy, am I going to turn five last?”  I said, “No, you won’t be last.  Sophia’s birthday is after yours,” to which he replied,“Yes, Sophia’s birthday is in Maine.” I said, “Not Maine, sweetheart. May.”  He said, “No, Mommy, Sophia’s birthday is in Maine.”

I know that specialness isn’t going anywhere.

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