Working + Waiting = Mobile!

On August 30, 2013, in Julia's Journey, Life, Personal, by Chris

As a parent of a kid with Down syndrome (or any special need, for that matter), you find yourself never taking anything for granted. Sure, it can get frustrating watching your kid’s typical friends seemingly breeze through crawling and standing and walking and learning new words as yours is still figuring out the intricacies of sitting upright. But when we are in that healthier place of letting go of the comparisons and simply enjoying and remaining in the here and now, there is an awful lot to learn.

Julia has this slow, methodical way of forcing me, whether I want to or not, to learn the art of expectant waiting. Jocelyn has a way of teaching me to work – hard – as we wait. Both of them have it all over me in those categories.

But let me set the scene for the kind of fruit that working and waiting can produce:

A little over a year ago, we (mostly I) put a goal out there that we wanted to see Julia walking by Easter. I shared it with a few professionals with whom we were working at the time and they seemed pretty reserved to the idea – that awkward place of knowing there’s only the slimmest chance of it happening, but not wanting to be the killjoy. So we marshaled our energies and pushed forward, angling for many as physical therapy consults as we could. One of the therapists even let us borrow a walker over the summer to hopefully motivate her.

I’m pretty sure that you won’t be surprised to learn that Easter came and went and our little girl still wasn’t making tracks on her own. In fact, the lofty goal that we had set the summer before really didn’t make it through the winter as the realities of Julia’s progress forced us to change from “Easter” to “someday soon”.

It wasn’t as if there was no progress. In fact, she was using a chair to walk around at her daycare by the time the spring buds were on the trees. But it always seemed like she treated it as more of an activity than a useful, necessary life skill. Crawling was a much more efficient and familiar means of movement. And the walker? It was gathering dust by the front door at home.

There were theories. We were assured that her gross motor patterns were typical. There were few bad habits that she had to unlearn. She had the strength, but either the confidence or the will – or both – were lacking.

But the work continued. I have spent the entire summer hunched over so my daughter could grab my fingers to walk. Jocelyn focused with the physical therapists so that Julia could (with a lot of complaining) become accustomed to balancing herself, and there were endless games at home to get her standing and moving. We were even able to get her interested in the walker now and then.

We often describe the moment that Julia catches a new skill as “the flipping of the switch”. For instance, we had been working with Julia for months on learning to crawl on all fours and wondering whether she was ever going to get it. Then one morning over the last Thanksgiving holiday, she found an ample expanse of floor and just did it.

And she never stopped. We look back and say it was like flipping a switch, and remember the humor as we stood there, dumbfounded, as all of the work, all of the therapy, all of the encouragement cosmically wove itself together and played itself out in the unseen interplay of nerves, muscles, bones and the brain that was madly coordinating it all.

We have not seen a quantum jump in ability since then. There had been encouraging flashes of progress, but it had always been very incremental and hard won. But last Sunday, another switch flipped.

It started with a stroll with the walker that Julia had never taken past the neighbor’s house. I watched over my shoulder as I was watering the basil as she cruised and adjusted and cruised again past four houses to the corner. From a distance, I saw a short negotiation between her and Jocelyn and they started across the street.

I get so focused on the task right in front of me that I can often miss the adventure happening all around me, so I was a little slow on the uptake as far as what was going on. I was finally shaken out of my trance when I got a call from Jocelyn asking me to come to the playground a block and a half away. Apparently, Julia had found her motivation and was going to get to that marvelous place that she would see from the car, but never got the chance to experience. She was going to get there by any means necessary.

Once more, all of the work and therapy and encouragement and practice converged and coalesced that warm Sunday evening; and my daughter’s world got… bigger. A thousand times bigger. And as I hurried to catch up, some kids from the neighborhood joined her as she explored the structures in that little playground. And for a little while, she was just another kid and we were just another family enjoying the playground. And all of the work was marvelously worth it.

We’ve been back – more than once. But this little girl is very, very different from the one just a week ago. She is slowly beginning to discover a new, wondrous facet of her autonomy. I can only imagine the possibilities that have awoken in her. Look out, world! Here comes Julia!

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3 Responses to Working + Waiting = Mobile!

  1. Jennifer Munson says:

    Your beautiful writing made it possible to imagine the sheer exhilaration she must have felt on that walk. What a joy to have a window into such a huge milestone as it unfolds!

  2. Grandma Goodman says:

    Great to see this new progress – you an Jocelyn are doing such a great job with working with Julia to help her reach these milestone. All children have there own pace and Julia is no exception.

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