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Crazy Little Things Called Wheels

2 Apr

Low muscle tone and roller skates: two things that go together about as well as the proverbial fish and the bicycle. Or at least, that’s what I thought.

Our 3-year-old son with Down syndrome was born with pretty low muscle tone, or hypotonia, which is very common with that diagnosis, but his tone is low even taking that into consideration. The exact explanation of low tone is twisty and slippery and hard even for those with a medical background to describe.

Essentially, it means that fighting against gravity will always be harder than for the average person and that his limbs will be so flexible and loose that physical activities like running, climbing and gripping will always require extra work and practice. His trunk is also particularly weak, though with time, therapy and exercise, it has gotten much stronger.

So it took him until past 14 months to sit up by himself, and longer than two years to take his first unsupported steps. I like to call him my little semolina noodle, because when he gets mad and doesn’t want to do something, he goes all limp and stringy and will not stand up on his two legs no matter how much you cajole him. He still trips and falls. A lot. He can tumble off chairs in a single bound, is not yet fully comfortable on a regular playground swing, and has had a few nasty encounters with concrete stairs. He also feels like he weighs about 50 pounds even though he only weighs 37. “Heavy, heavy!” as he likes to say.

However, a miracle occurred at a recent birthday party. He was able to roller skate!

My older daughter, age 6, had been invited to a skating party at Kate’s Skate. I debated about whether to bring all three kids, as it was a daytime party during winter break. The mother of the birthday girl kindly volunteered that everyone was welcome to come. We would later repay this kindness by alternately throwing all the spoons on the floor (little brother), spilling soda on the pre-set table (little brother and big sis), and falling into the cake and leaving a big smear mark (big sis) even before the candles were blown out. Um, sorry about that. (Blushing profusely).

I hemmed and hawed. Maybe I should drop the twins at the babysitter’s house. Maybe I should just bring little sis, who as our son’s twin is also 3, because she has mad athletic skills and does well at skating. (I grew up without a drop of athletic ability, and so while it may be obvious to others that 3-year-olds all over the world are skating, skiing and swimming, to me it is still something odd and remarkable.)

The last time we went skating there — the twins’ first time on skates — it was a disaster for me and my son. He could not even balance for one second on those devils on wheels. He cried, he whined, he moaned. It was a fundraiser for my daughter’s school and I held him up under his arms the entire two hours we were there. Luckily, one of our favorite teenage neighbors came along as a mother’s helper and she watched out for the girls.

We’d skate on by the other parents, his shirt half hiked up from the effort, him writhing with discomfort, me gritting my teeth and cursing my decision to also wear skates. My back ached; my arms were about to fall off. Moms and dads looked at me with contorted expressions — was I torturing my child on purpose? I’d just smile back and give them that knowing eye-roll, as if to say “Kids… What are you going to do?” Inside I am saying, yes, people, I am torturing my child, and myself, because there are a couple of points to make here. The most important point is that kids with special needs can do anything their typical siblings can do. The other point is that tired, half-delusional 40-year-old moms of such kids should not be donning roller skates at 7 p.m. on a Friday night.

But I decided to try again and just bring everyone to the roller-skating birthday party. Big sis never wants to leave her twin siblings behind — they must come everywhere with her, like beloved dolls. This time, at least, I would not be wearing skates. Maybe I would have my son not wear them either; surely he would remember his last traumatic experience and would not want a repeat performance.

As we made our way to the counter where you trade your shoes for skates, another Mom passed by with her young sons in tow, both already on skates. I remarked that they were doing so well. She said yes, but that it had really helped that the wheels had been tightened. What? I asked, feeling like a cartoon mouse that has just realized the cheese had always been his for the taking because the mousetrap was broken.

“Just ask them to tighten the wheels,” she said. “Then they barely slip around at all.” Could it really be that simple?

Why yes, yes it could. The helpful young man at the skate counter smiled at my son and said “Hey buddy, you excited to skate?” No surprise, or wonderment in his voice, that a child with Down syndrome would want to skate. I wanted his nonchalance; said a silent prayer of thanks for putting this young man right here at this minute. He asked my son’s size and brought out a pair of skates. My son looked happy and started playing with the laces and trying to put them on.

“Can you tighten the wheels?” I asked.

“Is that good?” came his reply, after a quick adjustment.

“All the way, please,” I responded.

Copyright Victoria S. Vila, 2011

And just like that, we put on the skates. He stood up. My son with Down syndrome stood up on roller skates — four wheels under each foot — and did not fall. I held his hand for the first few steps, but after that, we both realized he could get around on his own. Sure, he wasn’t actually skating — it was more like a shuffle, but he could move without much assistance, slowly, and be just like the other kids. I’d stand right by him and hold his hand if he needed it. If.

It was time for the party to begin. Excited kids, most unsteady on their skates, headed for the center of the rink. Mine were no exception, squealing with delight. They all felt the gravitational pull of the friendly mascot, a large dog on roller skates, and waited their turn for a hug. I stood slightly in the distance, holding no one’s hand.

At that moment I started thinking about one of the greatest gifts of parenthood, or of the universal human experience, really: a whole world of emotional highs and lows that bubble way inside you, a landscape of deeply felt experiences that no one else can see or share, but that make your own life rich, transcendent even.

To the casual observer, I probably looked just like any other mom there. Smiling, watchful, ordinary. They would see the giant costume dog and the poorly lit roller rink; they might feel the thump of the dance music and hear the children’s laughter. Nothing of note happening here, people, move along!

If they got closer, they might have noticed my eyes welling up with tears, but never would they realize how filled up I was with pride for my son, for his perseverance, his determination to be his sisters’ equal. That he was roller skating was not my choice, but his.

It’s happened before: We take him someplace new, unsure of how he will react or how much he will be able to participate. When it works well, it always seems slightly miraculous, because so much emotional effort has been invested. When it doesn’t work, we may feel frustrated, but we usually understand why.

This time seemed different. I hadn’t thought much about it, because I just assumed he wouldn’t want to roller skate. That he was able to — that he wanted to — was a gift out of the clear blue, an unexpected delight on a random Wednesday afternoon. A minor adjustment — tightening the wheels — made it all possible, but his will sealed the deal.

I will try to keep this in mind when contemplating his future. When I am unsure of what direction to take with him, I will try to present him with the path that leaves open the most options, even if some of those options include failure. Maybe letting him make the choices sometimes could be the best answer to the everlasting question: What do I do now?

Wish I May, Wish I Might

25 Jan

may 13 - evidence

When you have a child with Down syndrome, you have lots of dreams and goals for your little one. Some of them are simple — or I should say, they sound simple to most people — dreaming of the day he will walk, or say your name, or sleep in a bed instead of a crib, or sit at a table in school and complete a project instead of abandoning it in frustration.

Our son is 3 now, and all of the mini-dreams I mentioned have come true for him. In each case, it was a time for much rejoicing and the marking of a true turning point in his life, and in ours. I often feel like special needs parents have been given a great gift, because we appreciate the simplest things so fully. These little victories come in brilliant starbursts, unexpected and awesome to behold.

Some dreams are vaster. When you are still at the beginning of your journey like my family is, these big dreams often seem as out of reach as the next galaxy. The wish for full inclusion in a regular classroom; for a college education, a driver’s license, a job and a life of his own, hopefully with a partner by his side.

I hold these big ideas for my son close to my heart. I do. Like any parent, I want them all. But if I had to paint a picture of my fondest wish for him, it would look like this:

It is raining, and the day is gray, but warm. There is a playing field with short green grass and a mist hovering close to the ground, giving everything an ethereal quality. A group of teenage boys have finished their pick-up game and are walking off the field, water dripping from their hair and their shorts, mud clinging to their soles of their shoes. They have played football, or soccer or baseball, or maybe they’ve just completed a run.

Despite the sogginess, they are not rushing, not desperate to get out of the rain. They embrace it, because they will soon be men and men do not trouble themselves over a little rain.

They have everything going for them, and people take notice of this because it shows in their eyes. They have found a place in this world and it is called self-assurance, tenuous though it is at this tender age. Here is their secret: they walk separately but together, a temporary tribe. Some of them have matching gaits, step by step, but they don’t notice that. Maybe they are laughing, but maybe they don’t look at each other at all. They don’t need to. They are friends.

Among this group is my son. Walking as tall as everyone else, smiling but quiet. Thinking, like everyone else, about his victories and mistakes on the field, and the pizza and soda that awaits. He doesn’t notice me, because I am not there. He doesn’t need me to shepherd his every move now. But when this happens, I will know it, somehow I will know about this eternally simple day that nonetheless shook the sky in my little corner of the world.

The door to our house will open, and he’ll say “Hey Mom, I’m home.” I’ll want to look slightly annoyed because he has forgotten to wipe his feet and now there is mud on the floor. But this time, I’ll probably let it go. And that night, I’ll stay up late imagining a new dream for us.