If I Knew Then What I Know Now

For the past month or so, Max has been pulling to stand and making some attempts to cruise. His standing has improved tremendously; he feels more solid when he stands and seems less fearful than he once was. We have, of course, been encouraging him to do more of the same and praising him when he does. And, we are grateful that he is motivated to move his body in this way.

But.....here's the dilemma. Because I have a typical child, who is younger than Max, I see how typical movement is supposed to progress. (It was just when Jozey started pulling to stand and starting to walk that Max was much more motivated to do the same.) Her movements are not only fluid, the progression of movements is different. I notice that Max actually relies on his spasticity, the high tone in his legs, to pull himself to stand along furniture. For example, the right foot (and he usually leads with the right) starts to come in, then the left foot points and the left leg stiffens and pushes his body up. He doesn't put alot of weight on that right foot, the leading foot. So, while the mobility is there, my concern is that he continues to rely on abnormal motion patterns to achieve the end result. And, so I wonder, is that beneficial to him in the long run? And, if not, how do we break him of the abnormal pattern and help him move his body in a more normal pattern? (Right now, we've resorted to constant verbal cues to keep his feet flat, push with the right foot, stand tall, etc all in an effort to reinforce the more typical movement patterns in the hopes that his brain will eventually "get it".)

I've been posing this question to his therapists and to his pediatrician. The consensus seems to be that, for now, any mobility is a positive thing. We could try botox to release the tight muscles so that Max has to use the weaker muscles for mobility. But, the disadvantage there is he might not have any mobility, and though it would be temporary, it would be highly frustrating. Another opinion is to allow him to continue to use whatever mobility he has with confidence and, once he's older, explain to him about his strong muscles and his weak muscles and how he has to start using his weak muscles.

When Max first came home from the NICU, he didn't move much. His first movements were actually manifestations of his CP, although we didn't realize it at the time. Typical infants do a bicycling with their legs; it's a very natural movement. Max would pull both legs in, then kick them out, like a frog, with toes pointed inward, head arched back. That is not natural; but being first time parents, we were thrilled with this movement. Back then we should have started the exercises with him that would mimic that bicycle motion.....but we just didn't know. And, now, as I watch my son struggling to take steps, I keep asking myself if I could have done more? What could I have done differently?

I realize I can't change the past, and that I need to work within my present reality. But, it would be nice to have a glimpse of what I could be doing NOW so that one year from now, two years from now, I'm not asking myself the same questions.