A State of Contradictory Predictability: What it means to be a sensory mama…

I have issues; I always have. Little sensitivities that have stopped me from fully participating in life from time to time.

From refusing to go to people’s houses when I was a kid to vomiting when I smell something strange to chronic insomnia or insisting my mom buy my clothes a size or two too large and a compulsion to have moderate control over my environment at all times. I always thought that I was quirky -maybe shy and a little bit misanthropic- and definitely controlling. I have accepted my quirks; and the people I choose to surround myself with have too or I am so comfortable in their company, they have no idea I have so much anxiety or could even be considered by some to be shy.

But, as my son got older and more firmly entrenched in toddler-hood, I noticed that he had a lot of the same sensitivities I had as a child and still cope with as an adult. And so I thought, “Oh, he is so much like mommy”- quirky, creative, given to extreme times of misanthropy and then embracing certain events with family and friends. A little contradictory at times but predictable at others.

We moved along like that for a couple of years. Dexter embodying a little eccentricity and the family, for the most part, adjusting to it and moving about our daily lives.

Then, two things happened. I asked my in-laws to take him and his older sister for an extended weekend for my husband and I to get away; his teacher’s expressed concern over his not choosing a dominant writing hand.

My husband and I have not had a trip alone since Dexter was born; he is now five. Our anniversary is coming up and so I asked my in-laws to take him and his sister for an extended weekend. But, my in-laws expressed more than the usual grandparent resistance to having the kids for three days. And, I couldn’t understand why. They wouldn’t refuse to take him but wouldn’t give m an answer either, but expressed concerns over his perceived behavioral issues and proceeded to refer me to books to read, child rearing philosophies and so on. At the time, I saw it as a way for my mother-in-law to assert her parenting philosophy, as it differs so much from ours and is something that has been a trigger in the past with our daughter, now 13.

Congruently, Dexter’s teachers mentioned his fine motor issue and inability to form the tripod grip. As a former teacher myself, I took to the internet to research issues with grip and happened upon sensory processing disorder (SPD).

At the time, I read the list of symptoms and thought again, “Wow, Dexter and I have the same quirks and a lot of them are on this list.” Then I took stock of the issues my in-laws were having with him, like his refusal to sleep, to put his socks on, to eat anything besides his top five. And, a light went off. What if both Dexter (and I) have SPD?

With that realization came a slew of doctor’s visits, occupational therapists, fruitless calls to the insurance company, more books, more websites, more solicited and unsolicited advice on how to tame our challenging little boy. In the end, he was diagnosed with sensory processing disorder with delayed development in both fine and large motor skills.

And, I was overwhelmed. And, relieved.

Overwhelmed because tackling and changing things that seemed so innate and a part of his personality seemed insurmountable and counter-intuitive. He is who he is. And, I don’t want to tamper with that.

Relieved because we finally had a name for what was happening and a path to follow.

And, beneath these feelings was also a feeling of responsibility and more than a little bit of heartache.

SPD is genetic. And, while it is not on the Autism spectrum, it is often confused with some highly functioning forms of Autism due to the shared symptoms. When the word autism comes up, parents get scared.

I think what really drove it home for me was when one of the therapists we’ve talked to said, “He spends most of his day uncomfortable and so spends an even greater part of his day seeking sensations and things that make him comfortable.”

That struck my core. I know that feeling so deeply- that inability to be comfortable- whether it be sitting in the grass for a spring time picnic or sitting in a conference room for a meeting or watching a movie with friends- at times it is hard for me to sit still and let life happen and other times it is really difficult to get up and go.

And clothes- don’t get me started on my protective layer. For the most part, it has to be loose, soft, flowing even. I love fashion and the self-expression that comes with it. Over the years I have bought so many stiff material clothing items only to try them on again and again at home- only to remember that the sleeve pinched in just the wrong spot or the skirt was just too confining, even though the size up was too big- and so back in the closet they go. Only to be taken out again the next season and then eventually donated.

We have the same issue with Dexter. Only sweats and tees for him. And, often they are sizes too large and well-worn. The thrift store is the best place to get his clothes because often times used clothing is already soft and worn, ready for his little tactile challenged body.

I could spend all day writing about the this’s and that’s that Dexter and our family deal with daily. But, I won’t.

Instead, just one image.

Most days when I pick-up Dexter from school, he runs over to me, takes down my hair and buries his nose in it, takes a deep breath and sighs. Often the best and worst moment of my day, his embrace represents the whole of SPD for Dexter and me. A state of contradiction, the best because we are together and comforted but the worst because it is so evident that he has been waiting for that moment all day- seeking comfort.

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