Category Archives: sensory processing disorder

The Invaluable Lesson My Son’s Sensory Processing Disorder Taught Me (Or, Let It Loose Like A Balloon)

invaluablelesson

I never know whether to say my son has or had sensory processing disorder (SPD). It’s been two years since he met all of his occupational therapy goals. His body is healthy and strong, he’s social, smart, and manages new people and environments well, and he’s as normal and ordinary (i.e. peculiar and strange!) as any other seven year old boy.

Now, as we skip easily and happily through most days, it’s hard to believe any of it happened at all. Don’t get me wrong. There are still hurdles. Focus and attention span, visual processing, and food aversions/avoidance are issues we encounter daily. But there’s something very different about our present day sensory challenges.

Me.

I don’t particularly enjoy thinking about everything that was once wrong with my son. In fact, it’s hard for me to go back and read my blog posts from that time period. It’s not that I regret writing them. I’m fortunate that I had the creative outlet to express myself when I felt so isolated in my experience, and I’m grateful that in the process of writing, I connected with other parents dealing with SPD and helped them (and me) feel a little bit less alone. Still, it doesn’t mean I don’t cringe a little bit when I realize just how lost and vulnerable I was.

It’s emotionally and physically uncomfortable to think there was a time – a very real and very difficult time – when my son’s fears of things like “Finding Nemo,” hand dryers, chicken, automatic flushing toilets, pants, the neck hole of shirts, swings, and bounce houses turned our lives upside down. What’s even more painful is how I handled it. I don’t mean to beat myself up. I did the best I could, but, at the time, my best included a lot of anxiety, anger, guilt, and impatience. I wallowed in the setbacks, I feared the victories because the next battle was imminent, I agonized over what I could’ve/should’ve/would’ve done differently, and I worried about everything.

Around this time last year, I had a frantic and irrational conversation with our occupational therapist a few weeks prior to the first day of camp that went something like this:

Me: “I’m not allowed to pack his lunch for camp. He’s going to starve.”

Her: “He’s not going to starve.”

Me: “Yes, he will.”

Her: “He’ll find something to eat.”

Me: “No, he won’t.”

Her: “Let him figure it out.”

I followed her advice (as best as I could), and, as usual, she was right. He ate a peanut butter sandwich for lunch every day for six weeks, and if anyone asked him about camp, he said it was the best summer ever. Period.

Recently, something extraordinary happened. My husband and I took the kids bowling. That’s not the extraordinary part, although it was astonishing (we’re not the family that bowls together type). The extraordinary part was when my sensory eater unexpectedly tasted a French fry. A French fry! A few years ago, I would’ve flipped out. I would’ve cried, cheered, begged him to eat more, and fantasized about ordering French fries at restaurants all over the world. Then, I would’ve been heartbroken when he refused to take another bite or said, “I don’t like it” (after one teeny taste). This time, I was overwhelmed with pride and hope, but I simply said, “That’s awesome. French fries are awesome. You’re awesome.” Then, we continued bowling.

He didn’t taste another French fry for the rest of the night, but it was okay because I appreciated the moment. I didn’t drown in anxiety about the time before or after he tasted the French fry. I just relished the singular moment in which he did.

It’s not entirely accurate to say that I’m what’s different about our present day sensory challenges. My son is different, too. He was two years old when we first noticed oddities, or symptoms, of what would take almost three years to finally diagnose as SPD. He was a baby! Now, that little boy is a whopping seven years old (if you ask him, almost eight), and he has as much power to make choices for himself as I have the power to accept each one of them without dwelling on what came before or what happens next.

When he started camp this summer, I was way more worried about him tying his sneaker laces all day than eating too many peanut butter sandwiches. In fact, he surprised me one afternoon with the news that he ate a cheese quesadilla for lunch. A cheese quesadilla! I felt as giddy and lightheaded as the night he tasted the French fry at the bowling alley, but I simply gave him a calm and composed high five and asked him about the rest of his day.

As we plow ahead into adolescence, the conundrum of whether or not my son had or has SPD and the mystery of whether or not he’ll ever eat another French fry or cheese quesadilla (or fill in the blank) again is far less important than the invaluable lesson we’ve both learned along the way, which is to take each moment – good or bad – as it comes and then let it loose like a balloon in the sky and watch it float up and away until the next one comes along.

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Sensory Processing Disorder Is Real: “Trying”

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

  

“Trying”

(originally published on August 30, 2012)

A few weeks ago, I took Riley to the doctor because he snores like a troll, always has a stuffy nose, speaks as nasal as anyone I’ve ever met, and is a horrible morning person.  He’s also failed a basic hearing test in his left ear twice in less than six months.  After a thorough examination, the doctor agreed that his adenoids might be the culprit.  We were given a nasal spray, a prescription for blood work to check for allergies, and a referral for a pediatric ENT.  For most people, this would have been good news.  A step in the right direction!  Solutions!  Not me.  I felt the burden of something being wrong rather than the relief of questions being answered.

I promised myself that when Dylan finally wore pants or a long sleeved shirt I would throw a party.  Or hire a sky writer!  Instead of celebrating the incredible victory, I immediately set my sights on the next challenges – food and bounce houses.  I couldn’t enjoy the moment because I had so many more things to worry about.

On Monday, day six of food therapy, when we transitioned from green light (easy) to yellow light (hard) foods, I found it easy to be pessimistic about Dylan gobbling up a grilled cheese sandwich, a food that I haven’t been able to get him to eat at home in more than a year.  There was no victory lap for me – only a cynical feeling that he succumbed because the alternative, a piece of chicken, was far too difficult a proposition.

On day seven, I was in my element.  After two hours of crying, hiding, and failed manipulations, Dylan failed to eat a single bite of his dinner choices.  Our therapist left the house with a big, fat zero in her “percentage of bites taken” column.  Oh, how I reveled in the anger, frustration, and guilt!  The crying and the second-guessing came so easy!

Yesterday, in a moment of clarity (or mad desperation), Dylan declared that he would eat celery during his dinner session.  To say that I was surprised would be an understatement.  It was an odd (and green and fibrous) choice for child who’s never eaten a vegetable in his life that wasn’t hidden in macaroni and cheese.  The only point of reference I could think of, besides a few occasions where we’d served celery with some kind of dip at home, was the “Wonder Pets,” and if I had them to thank for Dylan’s inspiration then it wouldn’t be the first time I’d expressed my gratitude to Linny, Tuck, and Ming-Ming. Suspicion crept over me, but we stopped at the grocery store and bought a head of celery anyway.

Are you wondering what happened next?  Are you sitting down?  He ate the celery.  It was really hard for him to do, but he swallowed his fear and, by golly, he swallowed some celery.  Speechless.  Shocked.  Flabbergasted.  These are pretty good word to describe how I felt.  I praised him and went through all of the motions a proud parent would do after witnessing such bravery and achievement, but I didn’t feel the way I thought I would feel the moment ate “new food.”  Instead of feeling happy and relieved, I felt confused and duped.  I wanted so badly to believe that celery was the hammer that would finally knock down the wall, but I didn’t.  Of course not!  My strength lies in wallowing in anxiety and doubt rather than basking in the wonder, albeit odd, of Dylan eating celery.  Celery, for Pete’s sake!  One of my rules, which were published at Voices of Sensory Processing Disorder a few weeks ago, is to savor the victories, especially the small ones.  Believe me, I’m trying.

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