The chaos and mania of parenting a child on the spectrum

From Pity to Power

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I clicked on my inbox this week and, to my surprise, saw that my daughter had received a birthday invitation. What I have come to view as a pity-vites for my very, wild child. I am grateful, yes, but also immediately adjust my expectations and assume the invites are sent out of duty. Or far worse, the dreaded pity. This time, I’m not so sure it is the only emotion that has popped up in my inbox. There just might be the slightest bit of competition, and I have to admit, maybe my daughter and I were the ones who motivated it.

For most of the year, my daughter was invisible to the mother who sent the invitation. When we used to bump into this mother and child at various school events, or those dreaded brownie meetings that I misguidingly thought might conceal my daughter’s social impairments, this mother will never look directly at my daughter. When she attempts to say hello, clearly uncomfortable with my daughter’s inability to make eye contact, she will address us in an overly phony, sweet cadence, nodding her head slowly to time her way through it. She expects not to receive an answer.   And then I almost regret telling people about my child’s struggles. I loathe the uncomfortable pity gaze and the forced greetings. But, when I don’t inform them, they view her disability as something else: a “shyness” or an “unpopularity,” and therefore, a weakness, a weirdness, an inferiority. Something not to pity, but to compete with. Something to walk by and note, and possibly comment on later, all the while feeling a smugness at their own child’s dynamic personality. This may sound paranoid, but I do not struggle with the same impairment as my daughter, and I can aptly read it on their faces. So I choose to call them on it. If they are going to be smug, if they are going to gage and compare, then they can also understand what the baseline is. I want to know that they are not winning the race, as much as they are competing with an opponent whose legs are tired, an opponent that never heard the starting gun. Unfortunately, by informing people about her struggles, I actively have chosen pity. And I thought pity was better. That is, until my daughter’s own birthday party came up. On your birthday you don’t want pity. And you certainly don’t want to be ignored. Every little girl should be the center of attention on her birthday. So we planned a party that would not only prevent her from being ignored or pitied, we planned a party that switched the balance of power just a bit, if only temporarily. And now I can see we hit our mark.

For pity or duty may be the impetus behind sending us the invitation, but it is competitiveness that drives the party. The pity-vite or guilt-vite is such an obvious and clear visual display of the mother’s ego, it makes me wonder, as I have many times, about her own social functions.   It is a visual confection of her daughter’s gymnastic prowess, triple images of her in blonde ponytail and shiny, spandex, contorting herself into brain bending poses. The obviousness of it is almost as painful as my daughter’s lack of eye contact. I almost expect the top of the card to read “look at me.” That is my first reaction. I roll my eyes at the sight of it. But then I am forced to admit to myself that I was guilty of having done the same at my own daughters’ party. We may have used it as a way to equalize. Maybe even a way to get even. I had leveled the playing field a bit, and now I was paying the price.

When my husband opens the email in our family address and shows me, we both have the same look on our faces. Dread. Our daughter has done nothing but talk about gymnastic classes. Her attempts at cartwheels are cringe inducing and painful to watch and I there is a valid fear that one of them might result in a trip to the emergency room. Of course, it seems every girl has to conquer to cartwheel and the basics of tumbling 101, and I try desperately try to remember what age the girls begin to “grow out” of it. No doubt, my daughter’s acute interest has to do with this perfectly, blonde and neurologically thriving brain child. Cartwheels, or any gymnastics for that matter, encompass all of the skills that my daughter lacks. Gross motor skills, balance, core strength, motor planning, and the ability to cross at mid-line (as we have learned from many of my daughter’s therapists, this is anything that requires using two sides of the body and therefore brain at the same time and crossing them) like patty-cake, or sitting Indian style, for example, or riding a bike). I think of it as a short circuit. When the wires cross, my daughter’s brain overloads. It is no wonder she will fall in a heap and scream and cry. It is heartbreaking.

What the mother of the pity-vite sees is her own child adeptly performing is not just “athleticism,” as most of us view it, but it is really a demonstration of the healthy function of her daughter’s brain. It is not jealousy that I have for her daughter’s future gold medals. Watching my daughter’s attempts to hold her hands backwards when attempting to cross a monkey bar, or moving her legs upwards rather than pressed to the ground when trying a backbend, or falling not on her hands, but on her elbows to do a cartwheel, I am seeing a live demonstration of the inner struggle of her brain. What the pity-vite mother sees is her capable, athletic child. What she sees in mine is not a disabled child, but a less capable child. When I have mentioned the difficulties my child has, I have had a mother or two say, “Maybe she just won’t be an athlete.” Indeed.

No matter how much I would like my daughter to skip the party, and the pain for both us, I know that it is right to go. Not just because my daughter will want to be there, but also because the little gymnast came to my daughter’s party. And I did something sneaky. I did a little showboating. I exhibited some smug competitiveness of my own. I planned a party that I knew would sideline the other girls. I planned something that for once would put my daughter at the top for once.

I decided to have, of all things, an ice skating party. In spite of our daughter’s physical struggles, when she was three, we signed her up for ice skating. We dragged her and her brothers out of the dreary snow and into the rink. She had pleasantly shocked us by not crying once, even though she sat on the ice most of the time playing tea party with the stuffed animals they used to incentivize the children to stand. Her brothers have stuck with it, and gone on to play travel hockey, and she has, unimaginably, stuck with the lessons. While she is no Tara Lapinsky, she can skate. She is pretty fast, relatively speaking. She can actually glide. We often joke that having always struggled with balance and coordination, the ice might feel normal to her.

She will never be one of the lean, limber girls in their spandex leggings and graceful leotards spinning elegantly around the ice. But, by damn, she can stay up on those skates. And with the fierce determination that special needs children develop, if she falls, she will fight to get back up.

So I did what many egocentric parent does and I planned party in my child’s starring activity. Everyone wants their child to shine, but for us it was more about setting up our daughter for success. Firstly, we hoped and prayed that girls would show up. But if we managed that hurdle, then we wanted there to be an activity that she could actually participate in. In fairness, it really wasn’t wholly about her being the star. That is rarely an indulgence we are offered. We had to worry that she wouldn’t sidelined at her own party. Not just the one who doesn’t crack open the piñata, but unable to socialize, or communicate, or skip, or swim, or have the necessary motor planning for most party games. Sidelining was really the least of it either, as we envisioned her common practice she has of all out melting down in front of parents and kids alike, or worse, possibly getting aggressive. Some of you might wonder why we would choose to have a party at all, and I envy you the luxury of being able to only wonder.

We planned the party with a Frozen theme, perfect for an ice skating party, and all the girls’ latest obsession. It also allowed for safety. She couldn’t hit anyone if she was skating. And painful social games would be non-existent.

The theme couldn’t have been more perfect. And it was also perfect in its planning because it put my daughter in a position that she has never been in before—not even close–she might actually be the most accomplished at a skill. I guessed and secretly hoped that many of the first graders had never skated before. If they had, they had unlikely had lessons. There were ballerinas and gymnasts and t-ballers, but I hadn’t heard of any figure skaters yet.

We gave the girls’ snowflake stickers and a frozen cake, and I stuffed down my guilt by going overboard on frozen themed party favors, even making them homemade snowflake ornaments. I knew exactly what I was doing as parents and children arrived, wide eyed and shivering, no one knowing exactly how warm to dress, some never having tried on skates, some parents needing to stay to either skate with or at least stand by their children for encouragement. Now that drop offs are beginning to wane, I am becoming the only parent that always has to stay. Not very fun at the swim party, where I embarrassingly have had to get in my bathing suit in front of a mother and father I don’t know very well.

Now I saw the look I often have in other people’s faces. Concern and uncertainty. Embarrassment that they may have to participate in a child’s skill that they themselves have no capacity. I saw many of the cute girls from brownies and ballet, for once not being center stage and perfect, having to slip into ill-fitting brown rental skates, as my daughter took out her sleek white ones with the pink runner covers. While other girls clutched uncertainly to the walls, feeling off balance, overwhelmed, unsteady, and filled with anxiety about being left, or of falling down, or simply frustration that other kids were doing better, my child skated effortlessly in her beautiful Elsa dress. It was exhilarating. The metaphor of the movie even seemed to fit. My daughter was the misunderstood ice queen, unable to control or regulate. Wanting badly to connect, but frozen out, misunderstood. And today, in the cold, frozen rink, it didn’t matter. She was elegant and beautiful. She did look like the queen.

Before you think I am purely selfish, I was of course on hand to help the other girls, as were her brother’s, to coax and hold, and assist them. It was only after I booked the party that I realized that lessons were not included. I tried to find a teacher, but when one wasn’t available, I thought, hey, my daughter can’t cartwheel, or swim, or perform ballet, even when it is taken for granted that the kids should have the skills to do so. So they could all tough it out and learn too. In truth, they did, as I knew they would. And by far faster and with more ease than my daughter had. Hours to her years. By the end of the party, most, if not all, were on their feet if not taking those first awkward choppy steps.

And, of course, gymnast girl was at the top of the heap. She was the only one of the group to come in her own skates. I could see the fierce determination in her face as she frantically chop, chopped on her skates, looking like one of the Peanuts gang, trying to keep up with my daughter’s glides. It was slightly euphoric. She had probably never in her life come in second. And may never again, against my daughter. But, today she was most definitely second.

When the mother came back to pick her up, I saw from the ice that she had cornered my husband. She kept telling us both that her daughter had only skated once. She quizzed and quizzed us about lessons. We knew before the day was out that her little athlete would be signed up for figure skating. Sooner or later we would have to pass her in the rink on her way to junior Olympics. But today was not that day. We were having Frozen cake with thick confectionary sugar icing and rock candy. We were celebrating.

Now it is her daughter’s turn. The pity-vite is sitting in my inbox. Every time I think about clicking on it, I see her daughter’s blond ponytail and shiny purple leotard. It is our turn at the bottom. Her turn to shine. I realize that my daughter is invited mostly out of duty. And I know that when her daughter flips and turns on the bars at the amazement of our friends, that the mother will give me that patronizing smile that graced my lips at my own daughter’s party. I want to turn it down. I really do. There is nothing I have come to loathe more but being pitied. But at least I have the knowledge that once, if only for that one day, my daughter was not the pitied. She was the competition.










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