Saturday, August 25, 2007

A Not-So-Typical Outing

I have this underlying philosophy that it's important for Max to have as many typical experiences as possible, even with his limited mobility. To that end, I recently took both kids grocery shopping. It was the second errand of the morning, so the kids were getting antsy. I should have known better than to push two errands in one morning. But, I thought, "Oh, this will be quick and it's still early...". As usual, Max insisted on sitting in the seat section of the shopping cart, relegating Jozey to the cart section. Usually, this isn't a problem. But, at this particular store, the shopping carts are on the smaller side so as to better navigate the aisles. As soon as I put Jozey in the cart, she was picking her leg up to climb out. That was the first clue that this was going to be a bit less manageble than I had hoped.

Then, after I got the kids settled in their respective places, I noticed that the back left wheel of the cart was slightly bent and not working very well. This was causing the cart to veer towards the right, unless I pushed with both hands. And, as soon as we got into the store, both kids wanted out! Jozey kept lifting her leg to climb out; and Max was complaining because he couldn't get the seat belt fastened. The closure end of the belt was stuck, and there was not way I could get it out without taking him out of the seat. As I'm trying to explain to him that the belt is "broken", Jozey is continuing her attempts to climb out of the cart. I try to appease her by going to the front of the car and she immediately puts her hands out and says, "Up". When I refuse, she starts to wail and screams even louder, "Up!". I cave and take her out. Of course, that means holding a writhing toddler because if I put her down, she's going to bolt for the nearest breakable. So, I'm holding her as Max continues to whine about the belt, his frustration level increasing by the second.

A manager of the store walks by and hears me telling Max that the belt is "broken" and offers to help. (He must have noticed the frustration on my own face at this point.) I explain the problem, and he is kind enough to pull Max out of the seat and asks him to stand.

Manager: "Okay, buddy, you stand here."

Me: "Oh, he doesn't stand yet."

Manager: "Oh...."

Then I proceed to fix the belt while he's holding my son's arms.

Me: "Okay, it's fixed now."

The manager gently picks Max up and places him in the seat, but the braces make this a bit awkward. Max has to have his legs just so in order to get his feet through the leg openings. I talk him through it and he gets settled. Max immediately buckles the belt, then looks at the manager with a huge grin and says, "Thank you". The manager smiles at him and says, "You're welcome, buddy." I thank him, too and we continue on our expedition. After a few minutes, I notice the same man walking towards us, this time with two balloons tied to a shopping bag. With a gentle smile, he offers the balloons to the kids, gives them high fives and goes about his business.

We were in the store another 20 minutes or so, but I didn't see him again during that time. I wanted so much to thank him again for his kindness. He did more than distract my kids, he offered us a few moments of peace amidst chaos and that was enough to transform the experience from a chore to an adventure.

Monday, August 6, 2007

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.'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.