99 Problems

Published on December 15th, 2016 | by Elizabeth Beauvais

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THROUGH THE KALEIDOSCOPE: Elizabeth Beauvais on Why Her Special Needs Child Needs Her to See Beyond What’s So Special

Life would no doubt be a lot easier if our children more resembled paintings than kaleidoscopes. Fixed and clear, a single image we can wrap our heads and hearts and best intentions around, without the relinquishing of control that a constantly mutable and messy real-life child requires. We parents often forget to allow the lens to turn, letting the colors and shapes reshift with new light and new gravity, to settle and form a different pattern. We resist giving up our static vision as our children age, holding tight as they glide away from our expectations and become their own people. And when our children have special needs, we tend to prioritize one prevailing pattern.

At least I do. Fortunately, for me, I have a child whose personality is regularly cartwheeling, despite my own white-knuckled grip. And thankfully, because he resists being simplified into one static, flattened view, my child is forever teaching me to see him as far more broad and dynamic than his needs and challenges.

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Henry, my oldest son, sleeps on the bottom bunk in a pink and purple striped room he shares with his twin sister Charlotte, who regularly bests him in wrestling.  He uses two basic moves for defense, which we call “the wet noodle” and “the caffeinated grasshopper,” the latter typically accompanied by a wild helium laugh. In my predominant view, I interpret Henry’s wrestling style as due to his diagnosed weak muscle strength and motor control…but it could also be that he’s found it highly effective.

Henry is also often terrorized by his 2 and 1/2-year-old little brother, nicknamed Loki: God of Chaos.  Shaped like a square, Loki is all kinetic energy and brawn, like a tiny pre-war Austrian pugilist with a blond bowl cut.  But despite his brother and sister’s respective yang-ness, it’s Henry that usually determines the play.  Henry’s imagination and affable willingness comprise the backdrop for all of his siblings’ foreground showstoppers.

At 9 years old, and about 10 pounds underweight, Henry is masterful at creating stories and conjuring words.   He both delights and annoys his family by his use of Dadaism in everyday speech to counter traditional (and boring) conversations.

“How was your day, Henry?”

“The peaches have ears. I better not say.”

I’ve caught myself many times wondering whether Henry uses humor as a coping mechanism for where his sensory processing and motor skills challenge him. But it could also be that he is hilarious. What moves me especially about Henry’s humor is how unexpected it is.   How it seems to surprise even him – and how the more attention he receives about it, the less likely he is to exhibit it.    You have to listen very carefully to tune into his frequency.  The other day, my husband walked past him lying on the floor in the living room, hands folded behind his head, placidly staring up at the ceiling.

“What are you doing, Henry?”

“Being alive.”

Henry jumped when his dad laughed, because getting a chuckle wasn’t his intent.

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As Henry has gotten older, after our years and years of successful occupational therapy, multi-sensory listening therapy, Wilbarger brushing technique and speech therapy, it’s less important or even relevant for me to need to mention his challenges. So why do I reference it to nearly every new teacher, babysitter and coach? And why does it increasingly leave me with the icky feeling I’ve somehow betrayed Henry? I tell myself I’m relating important information because I am his conscientious, devoted mom, advocating for him at every turn. But doing this is also saying two things, both of which are false: Henry can’t advocate for himself, and his needs are the most important thing about him.

My prevailing story about Henry is far more a story about me.

I have a teensy obsessive problem with fixing, which is enabled (and even celebrated) by our educational culture. But while I can help Henry navigate his challenges, I can’t fix them. And, an even more radical thought: there’s nothing that needs to be “fixed” at all. I’ve let the worry over what he does at a different pace take up permanent residence at the margins of our lives. This is not fair to Henry and it causes me to risk doing the very thing I don’t want others to do — miss the fully hilarious, kind and sensitive brightness of my beautiful boy.

Recently I ran across some interesting research on prenatal testosterone transfer in dizygotic boy/girl twins. In English, this means that if fraternal twins are boy-girl, the girl is likely to receive some of her twin’s testosterone in utero, which then has been found to have the effect of greater athletic ability, more spatial awareness, more aggression in play and competitiveness.  Now, I don’t know if my daughter’s ability to do almost anything incredibly well, her athleticism and competitive drive is because of a hormonal supersizing she got during gestation – and I can’t know, precisely. But this little scientific detour points out that my view and understanding is not nearly as broad or objective as I think it is.  Charlotte could be the variable and Henry the constant.  Or more likely – both are variable, in variable ways.

I tend to peer through my kaleidoscope as if it were binoculars, as if I were magnifying an objective, immutable picture of what is, without acknowledging that the picture is subjectively influenced by what is next to it. One twin next to the other, one child averaged against many.   What is “gifted”? What is “special needs”?  And what does it look like when a kid has a good helping of both? Certainly for each child, all of these definitions are less a box and more a spectrum of light, something that takes on meaning in contrast to something else, the way we interpret one color based on the colors around it.

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Viewing Henry in full spectrum means releasing my hyper focus on his needs and challenges, and allowing his other many gifts to slip into the frame. For example, where Henry’s body might not always cooperate with as much agility as he would like, his perseverance picks up the slack.  Last July, we went with some friends to their pool where there was a big twisty slide at one end.  While Charlotte and her friends raced to it and slid down into the pool, again and again, Henry would climb up, walk to the edge and debate it, then turn around and head back down. He didn’t seem to care how many kids were behind him, cajoling him to hurry up and do it. He methodically, resolutely went up to it, debated, went back down, over and over.   I couldn’t bear to watch – all I could see was what he couldn’t yet do. I wanted so badly for him to go down, to take on the slide that was made for a child his age. Later, the friend I was with swam over to me and pointed to the slide: there Henry was, going down it … for the second time, then the third, then the fourth.  Months afterward, my friend told me that watching Henry that day helped her to quit smoking, trying and trying and trying again.

When I see my boy fully and dynamically, it’s his sensitivity I see shining the brightest. Henry notices my eyes from across a crowded room and reads my emotions, slipping a hand in mine when he senses I’m upset.  He stays on the edges of the group, which might make him harder to get to know. But if you are willing to walk to the periphery, get down on his level, take some time to talk about whether the Joker could best Two-Face (he could), or how far a bull shark can swim in fresh water (frighteningly far), he is all yours. At the periphery, where I think the sensory frequency of the world is not turned up quite so loud, Henry can adjust the dial, his antennae picking up many different stations across the airwaves.

When I was taking Henry to pre-K once, the June Carter Cash song “Keep on the Sunny Side” came on, and Henry instantly exclaimed, “That sounds like Grandmama Sara!” My mother, Sara, died when I was 14, so it was all I could do to keep my eyes on the road and hands on the wheel.  “How do you know that, Henry?”  She did sing that song, but it was not one of hers that I sang to my children and there was no way Henry could have known that Mom had always joked she sounded just like June Carter Cash (no tone, all gusto).

“Because she sits beside my bed at night and sings to me when I get scared.”

I almost had a wreck.

My oldest boy is not just himself a wonder, he keeps me from forgetting to wonder at the world. Loving Henry teaches me so much about suspending my expectations and letting the picture fluidly shift, so I can accept the gift of something far more beautiful than what I thought I’d see, hear something far more unexpected and mirthful, witness something far more tender in parenthood than I ever thought possible.

For Henry’s part, he occasionally offers a bit of self-analysis.

“I’m a late bloomer, Mom,” he told me recently. Then, unable to resist the Dada, he added, “And my bloom has a handlebar mustache.”

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About the Author

Elizabeth Beauvais

Elizabeth Beauvais is a writer, sustainability consultant and yoga instructor.  For twenty years, her writing and editing largely focused on food justice and security, environmental policy and corporate social responsibility, but now she’s hard at work to develop her creative side in narrative nonfiction through her blog.  Her work has also appeared in Dead Housekeeping and Elephant Journal. 



3 Responses to THROUGH THE KALEIDOSCOPE: Elizabeth Beauvais on Why Her Special Needs Child Needs Her to See Beyond What’s So Special

  1. HHarris says:

    I absolutely love this!

  2. Milly says:

    Love, love, love this about my Henny Pen, he is exceptional.

  3. GAL says:

    Great writing E! Also, ‘Great Understanding’…….Henry is Blooming!…..Love GAL

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