Making and Breaking the Rules

Today on Voices of SPD, we are joined by the mama at The Runaway Mama, quickly learned about many of the “rules” of raising a child with Sensory Processing Disorder.

But she also learned there are rules that we parents should follow as well.

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Making and Breaking the Rules

I’m a stay-at-home mom of two beautiful boys ages three and five. My boys are my greatest joy and my proudest accomplishment, but they’re also the reason I’m on the brink of losing my mind on a daily basis.

It’s one thing to be told you’re doing the most important job in the world, but it’s another thing to feel like it. I began blogging out of a desire – a need, actually – to make sense of motherhood. And when my older son was diagnosed with sensory processing disorder (SPD) last year, writing to make sense of it all took on a whole new meaning.

There’s a lot I don’t understand about SPD (and probably never will), but I know my son copes with his intolerances, discomfort, fears and anxieties with rules. A lot of rules. As his Mama, it turns out that I have rules, too.

Trust your instinct.

My son was officially diagnosed with SPD in October 2011, two months before his fifth birthday, but I knew something was wrong long before that. Like when his preschool teachers asked me if he had a hearing problem.  (He didn’t.)  Or when he shook like a leaf when he had to wear pants. Or when he hid under a chair during loud Mommy & Me music classes. Or when swinging, riding bikes, doing forward rolls, playing in bounce houses, meeting new people, eating new food or going upside caused panic.

Forgive yourself.

I knew something was wrong, but I kept hearing “Don’t worry, he’ll grow out of it” or “It’s just a phase” or “You’ll laugh about all of this in a few years.”  After we got the diagnosis, I was angry. I wanted to line up everyone who brushed off my concerns (which, by the way, included our pediatrician) and punch them in the face. I also felt guilty. Why didn’t I do something sooner? What kind of horrible mother would take so long to figure it all out? Be angry. Feel guilty. Work through it. Cry through it. Sleep through it. Curl up on the couch through it.  Just get through it so you can roll up your sleeves and get to work.

Surround yourself with allies.

When I was done being angry (I’ll never be done feeling guilty…I’m too good at it), I got to work creating a team of people to support us. We switched our pediatrician immediately. Through word of mouth, we found the most amazing occupational therapist on the planet. (No, really, she is.) We’ve since found a great speech therapist, and we’re about to start applied behavioral analysis (gulp) to tackle food issues. We always make sure teachers are in the loop, and we find solace in family and friends. Don’t get overwhelmed. Eventually, all the pieces of the puzzle will come together. And don’t forget (or be afraid) to get rid of naysayers who stand in your way.

Become an expert.

Every time our occupational therapist recommends a book about SPD, I buy it immediately. Then, I read a few chapters and either get confused or cry.  I desperately want to understand what my son is going through, and I learn something new every day. But what’s most important is that he’s safe and loved. (This, by the way, applies to all parenting situations.) You don’t have to be a specialist or know the definition of “proprioception” or “vestibular system” to know how to support your child. You are your child’s best advocate. You are an expert.

Be where you are.

On some days, I’m giddy with joy. Like when my son finally went inside a bounce house and LOVED it. (He’s been bouncing ever since.) On other days, I’m limp with sadness. Like when I imagine him as a grown man who eats nothing but cheese sticks, yogurt squeezers and popcorn. (I’m also exceptionally talented at worrying about things that haven’t happened yet.) Other times, I’m tense with frustration. Like when he whines at restaurants or when getting his teeth cleaned at the dentist leaves me in tears. Be where you are. Every day feels different, and each day has the potential to be victorious. Speaking of which…

Savor the victories (especially the small ones).

I sometimes get lost in a fantasy about the day my son finally eats chicken, spaghetti, pizza, salmon, turkey, meatballs, anything green, or fill in the blank. But if I get too caught up in waiting for that dream to come true, I’ll miss out on the successes he has each day. Like when he listens well, sits at the dinner table without having a meltdown, writes his name beautifully, scores a goal at soccer, wears a belt, simply says “no thank you” to food he doesn’t want to eat, or asks to ride his bike to the park. These accomplishments – big and small – must be celebrated.

Remain hopeful.

At my son’s first occupational therapy session, our therapist said, “Hang in there, you’ll see results quickly.” I thought she was nuts; but of course, she was right. Your first or next victory is just around the corner.  No, really, it is. I promise.

Break the rules.

This is exactly what we want our children with SPD to do – break their rules. We want them to knock down the protective walls they’ve built around themselves.  There was a time when I would under no circumstances bring food from home to a restaurant for my son.  If he were really hungry, he’d eat something from the menu. Then, I became aware of how intense – and sometimes repulsive – smells are to him, especially in restaurants, and how out-of-control it makes him feel.  I’m back to packing a few snacks or a peanut butter sandwich in my bag when we dine out, but I’ll probably change my mind again at some point, and that’s okay. If you get stuck or caught inside one of your own rules, break it and don’t feel guilty for doing it.

I look forward to sharing more of my journey as a Mama of a child with SPD. In the meantime, good luck making and breaking the rules!

This post originally appeared on The Runaway Mama. You can read more from her there.

If you’d like to become a part of Voices of SPD on The Sensory Spectrum, please read about how to join Voices of SPD.