Thursday, June 5, 2014

Delayed Walking

Early last year I had hoped that Juliana would begin walking in a few months time. I was hopeful that she would walk by summer. I was optimistic that it would probably happen by autumn, at least. And if not then, then surely by the end of the year. I continued to revise my prediction: definitely by her third birthday, right?!? But time has marched on and while she has made tons of progress, she still wasn't walking independently. Slowly I've moved towards acceptance of things I cannot change and I've come to the point where I am not really bothered by the lack of walking. Over the past three years I've realized just how hard it must be to have extremely low muscle tone. I still want to push her but I've also become more empathetic about her physical challenges. 

As you might expect, life is a little more difficult with a three year-old who doesn't walk independently. At home Juliana is completely independent and can get anywhere she wants; it's everywhere else that is a problem. For me one of the biggest challenges is that I can't set her lose to play outside. Just this morning I wished that I could watch the kids play in the yard while I sat on the sidelines with my coffee. Truthfully I could do that... but going outside is a big event that involves wearing old clothing (sometimes with "knee pads" - aka cotton nursing pads - stuffed in her pants), watching for crawling hazards (which of course are many) and then lots of washing up afterwards (and usually changing clothes). It isn't quite as simple as opening the door and going outside. But I try to give her every opportunity for normalcy, so we do it anyway despite the wake of ruined pants left behind.

I have devised ways to get us through most any day. I don't merely want to transport Juliana from place to place, I also want to give her constant opportunity to improve her skills. I rarely carry her, even when it would be easier to do so. This is more difficult now that she has a new sibling on the scene, but we manage. I can hold Charlie in one arm and support Juliana's walking with the other, which is what I do when encouraging Juliana to walk around the house. When we go out I usually have Charlie in a carrier so that I can support Juliana walking. When we absolutely have to, I'm able to carry both kids at the same time. For the most part Juliana walks at every opportunity. She was resistant to this idea initially but over the past few months she has really come around and now she usually wants to walk.

Yet perhaps the biggest challenge of all is the isolation that comes from having a child who does not walk. It's definitely not something I ever considered before I entered into the land of disability. There are certain places that Juliana cannot go. For instance, I'll let her explore a playground on her own if it is relatively empty. But if there is more that one or two other kids, forget it - they'll eventually step on her fingers and that's just not worth it. There have been numerous opportunities that we've turned down because it would be too much for me to juggle two non-walking children. There have been a few other times when we've left Juliana behind so that I could do something with Calvin.... something she could participate in too, if only she was walking. Disability is isolating. Food allergies, speech delay, gross motor delay, even sensory issues - all isolating. Isolating for her certainly, and at times isolating for all of us. It's something that you never stop to think about until you are affected by it. Sometimes it makes me mad, sometimes it makes me sad, but mostly I am just used to it by now.

Things are changing here though. The other day Juliana took her first real, unaided steps. This was just days after I had once again pushed back my timeline for walking expectations. For awhile I had been hoping that she would walk by late summer/early fall, as we're thinking about the possibility of some time in preschool. A few days ago I was trying to make peace with the possibility that she might not walk until the end of the year. And now... it looks like late summer walking might be totally within reach. I am excited, but mostly I just can't believe it. This has been a long time coming and now it seems surreal. I still remember trying desperately to get her to bear weight on her legs - and her desperately refusing. Now she's walking!