Therapy–the parents’ role

In the days after Julianna’s birth, the volume of information we had to process was overwhelming. Those who advised us—parents of kids with DS, doctors, social workers—were apologetic, but firm: some things could not be put off, no matter how overwhelmed we were. An echocardiogram, for instance. And getting enrolled in First Steps, so that we could start therapies as soon as possible.


Julianna was two months old before the paperwork cleared and we actually started therapy. Frankly I didn’t see what physical, occupational, and speech therapy could do for such a tiny baby. But I sat close by and paid attention, asked questions, learned. Not that I did much with the information. In those early days, I let the therapists do all the work.


Over the months I got more active, but I had my fingers in so many pots that I let Julianna’s therapy slide more days than not. I felt guilty about it, but it wasn’t until we hit the self-feeding snag that I really took the initiative and did something about it. After she learned to finger feed, there was another lull until Christian and I agreed to work the transition from floor to sitting twice every day.


Perhaps it was timing as much as anything, but Julianna learned that skill in two weeks.


Gerti and Kim credit us, as parents, and me specifically, as a mother, with Julianna’s mental and physical development. I always shake my head and think that if I’m the model, then woe to humanity. Or at least, children with special needs. If I did everything with her that I should…well, I think she’d be walking by now, and halfway to toilet trained. But in the last couple of weeks, for the first time, I am beginning to feel that I’m living up to their opinion of me.


The summer of ’08 is flying by now, and the new push is walking. But for the first time, I’m making a consistent effort to work with Julianna every day—not just on a sporadic basis. Walking, stair climbing, stair sliding, transition to standing, spoon feeding, cup drinking—for the first time, it doesn’t feel overwhelming. I can help her slide down the stairs to play and then run back upstairs for ten minutes while the kids entertain each other. I can help her do stairs and transitions on the play equipment at the park while Alex builds a “train” around us. I can walk her from the couch to the high chair at lunch time.


It’s functionality that makes therapy so much easier now—functionality, and the fact that we’re working on the higher skills instead of the building blocks (sitting, all fours, etc). Building blocks are a lot less conducive to quick two-minute intervals. They are an end unto themselves, and thus, far less rewarding.


My point? You want a point, in a blog? J


I guess my point is twofold:

One—parents, your job is important. Do as much as you can. I started to write, “Don’t beat yourself up,” but I find that a little self-inflicted conscience needling is good for me as a parent.

And two—when your child gets “stuck,” as Julianna was stuck in sitting for ten long months, when it seems that everything is work without reward or progress…keep the faith. Better days, they are a-comin’.