Sunday, November 20, 2011

11.21.11 A Matter of Support

We all need support of some kind, whether we are raising children, holding down a difficult job, remodeling the bathroom or even getting a new haircut. Garnering the right type of support and having it delivered in a manner that is actually useful, (a screwdriver isn't helpful if your holding a nail),  is a far trickier scenario than just asking for a hammer. Despite the circumstances of my life, I am still not very good at asking for help. Often, I know I need support, but sometimes I am not sure what kind of support I need. The opposite can happen too, when I know exactly what I need but can't find the right person to provide it. (Like looking for a hammer and coming up with a pile of screwdrivers.) Clearly, this situation is not exclusive to parents of special needs kids! But when we do consider how real support plays into the life of a family raising a child with unique challenges, it can explode into a wild octopus of a discussion with politics, finance, educational systems, medical diagnoses, fraud, cultural expectations and personal boundaries all fighting for a sliver of airtime.

I can at least open my mouth and ask for help. Max cannot. Lots of kids just like him have limited means of communicating a specific need and rely on their families and professional teams to interperet their signs and signals. It pays to be a good observer and watch for patterns and small gestures, tiny movements that might seem like nothing but really mean, "I'm starving, feed me now!" or my favorite, "I'm going to throw-up." Support can and does mean a myriad of things to both a special needs child and to that child's family. Maxwell is well supported on a number of levels. Is it possible to be over-supported?  Well, in Max's case probably not because we have so many challenging facets of Maxwell's life to focus our energy. However, very often we use a trial and error process to determine exactly what he needs. This can lead to interesting results and even more interesting, not to mention expensive, collection of stuff. Right now, Max's cerebral palsy is getting a lot of attention from all of us and the 'support' is getting laid on thick! 
Max's new support accessories...
Maxwell recently had botox and phenol injections in his legs and hips which provides a window of time for us to stretch his muscles without the contradictory messages of his brain to interfere. It is typical that the medical team will work to maximize the time his muscles are in an extended position and cast or brace the child's limbs...24/7 stretching! Once the muscles are stretched out, the child will still need bracing to help maintain the newly elongated muscles and support their body while they learn how to actually use those muscles to do things that we take for granted, like walk, sit up straight, and stand. This is 'support' in the most authentic sense of the word!

I am amazed at the high level of tolerance that Maxwell has for his new accessories, some of which he has to wear at night! He has quite a collection and needs to wear most of it together...kind of like his little sister, Flora Bay's dress-up policy....wear everything in the the same time. Being that this is Thanksgiving week, now would be a very good time to say Thank You to all the amazing people in our life at the center of the stage and in the wings...a supporting cast is what makes the star shine...and Max continues to do so thanks to you. We are grateful always but especially so this week. Happy Thanksgiving!

Max getting used to his new hip-brace.

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