Category Archives: sensory processing disorder

Sensory Processing Disorder is Real: “Bounce”

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.

#SPDisReal

  

Bounce

(originally published on May 23, 2012)

This is how my anxiety works:  I discover pins and needles in my left foot, so I must have a tumor in my spine.  (By the way, the MRI I had last week was clear.)  I find a new freckle on my arm, so I probably have skin cancer.  I write a blog for a while.  Then, one day I decide I should write a book.  Right away.  Before it’s too late and I’ve become an old lady full of regret (if the melanoma hasn’t already killed me).

Of all the possibilities, I jump to the worst-case scenario.  I bounce directly from A to Z, and in the process, I skip a lot of important stops in the middle.  Working with my life coach over the last few months has helped me (1) slow down and (2) focus on B, C, D, and so on.  With her guidance, the elusive book is still in my future, but I’ve slowed down enough to improve the blog design, add a URL, beef up my writing skills, and experiment with new features, like giveaways. With less bouncing around, I’ve accomplished more on my blog than I ever imagined.

A few weeks ago, I had a one-on-one session with Dylan’s occupational therapist about his mealtime challenges.  She asked me, “What are you afraid of?”  I said, “I’m afraid he’ll be a thirty-year-old man who only eats boxed macaroni and cheese and fruit squeezers.”  (Bounce.)  After delicately reminding me that he’s currently a five-year-old boy, she asked me what I want right now.  I said, “Well, I’d like to tie him to a chair and force-feed him a roasted chicken.”  (Bounce.)  Then I said, “But, I’d settle for him sitting at the dinner table for more than 30 seconds.”

And that was it.  Just like with the blog (and my health), I’d been bouncing around when what I really needed to do was stop moving.  Instead of forcing Dylan to sit at the table and try half a dozen new foods in one meal (and wonder why there was crying, whining, and chaos), I needed to work on getting him to simply sit at the table.  Just a few weeks into our new mealtime plan, dinnertime has become a lot less stressful.

Last weekend at a birthday party, Dylan went inside a bounce house for the very first time…and absolutely loved it. Until then, he wouldn’t go near a bounce house.  He was terrified.  I think it was a combination of the noise from the air blowers and the feeling of instability inside (a sensory nightmare).  As you can imagine, this has caused me a great deal of anxiety (and a lot of bouncing) over the years.

I actually don’t care much for bounce houses.  In fact, nothing makes me happier than knowing Riley is old enough to go in a bounce house without my assistance.  (Yes, Riley loves bounce houses.)  I believe people can avoid bounce houses and still lead successful and productive lives.  What bothers me is Dylan’s Fear.

I’ve brought Dylan to dozens of bounce house birthday parties only to see him cower in a corner.  I’ve seen the simultaneous fright and longing in his eyes as he’s watched his friends bounce in, out, up, down, and all around bounce houses.  He’s always wanted to join them, but he couldn’t, and that kind of phobia is dangerous.

On Saturday, though, he stared down the Fear and bounced.  And bounced and bounced and bounced!  Once he realized how fun it was, we could hardly get him out.

(I’ll get in big trouble if I don’t mention here that Mike played a big role in getting Dylan to go in the bounce house at the birthday party.  Yes, there was a little bribery involved, but no matter what I offered, he never would have done it for me.  It pains me to admit this, but Mike is the Dylan Whisperer.  I am not.)

It’s hard to describe what it felt like to witness Dylan conquer this fear, to break down the wall he was hiding behind.  It was a feeling of lightness – a weight lifted off my chest and a blend of joy, pride, hope, and possibility.  It was similar to what I felt when he got dressed for his graduation pictures. After the birthday party, I hesitated sharing the news because I didn’t want anyone to deflate (pun intended) the delight I felt.  I also chose not to write about it until now so the glory would be all mine for a few days.

Every kid has a struggle, an issue, or a quirk.  And every parent has to figure out how to help them through it, all the while managing their own personal idiosyncrasies (i.e. Crazy).  In my case, I’m working on doing less bouncing.  In Dylan’s case, he’s working on doing more bouncing.  Big, brave, beyond belief bouncing.

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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.

#SPDisReal

 

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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