Monday, December 27, 2010

Funny name, eh?

And so, a blog is born.

For the record (and this is a record!), I do not think that the world needs another mommy-blog, far from it. I personally know at least a handful of fantabulous mommy-bloggers -- they are all amazing, successful and incredibly interesting to read, and it is an intimidating prospect to even consider tossing my hat into that ring! And yet, here I am. Why? Because, I think, I might have something different to say.

Which is perhaps the best place to begin -- at the difference and why I'm here, and how I hope that ultimately this little project will help me and my family to reflect (or vent), learn from our experiences, and maybe it will serve to help other families with children that have differences and, therefore, require a slightly different path to help them on this journey of life.

I'm a 34-year old working mom. I'm a graphic designer, and a part-time teacher at a local college. I do a fair amount of yoga, I like to cook, and I have incredible taste (kidding, sort of..) With my wonderful and supportive husband, I have two great children. My daughter, Livy, is 8. She's bright, creative, funny and fun. She's also patient, compassionate and bit older than her 8 years would imply. She's the amazing big sister to our son, Simon, who is the inspiration for this journal.

Simon is 4 and a half. He's a very affectionate, happy little guy who we are about to make a whole lot less happy. Tomorrow he (well, we) will embark upon a pretty ambitious therapy program at Kennedy Krieger Institute: the Constraint Induced Movement Therapy Program / CIMT.

Because of a stroke in-utero, Simon has Cerebral Palsy. He also has Hydrocephalus (with VP shunt placement), Epilepsy (that's new as of last month! More about that adventure later, perhaps), and some regular kid stuff like asthma and food allergies (mainly to nuts). As a baby, he had strabismus, and spent his entire first year of life with crossed eyes, but we were able to surgically correct that (though those early cross-eyed baby pics were adorable... maybe I'll post some..) From a cognitive standpoint, he's currently delayed about 2 years, particularly in the area of language development, and is in a special-education program at school. From a motor standpoint, he's hemiplegic, which means that he has full use of one-half of his body, but the other half has some paralysis. The degree of impairment ranges from person to person. Simon gets around very well overall, and so far nothing has been able to stop him from climbing on both playground equipment and furniture... the kid has no fear.

Simon wears an AFO (a sort of plastic brace) on his left foot and ankle to help keep his hip in alignment and prevent him from dragging his leg. It is his left arm, particularly his hand, that he has the least use of, and it is this appendage that the CIMT is meant to focus on by casting his "good side" to induce use of the weaker side. The hope is that this will cause Simon's brain to create new neuro-pathways to create a permanent change in his level of ability with the limb.. and, maybe, even result in other cognitive gains (fingers crossed!!!!).

So, Constraint Induced is the name of the therapy we're about to try, but I feel that in a lot of ways it describes life for us, as a family with a special needs child. In a few short years, we've encountered a lot of challenges. Things that constrain us from doing or living or thinking or planning in a "typically developing" way. But, the changes that these challenges (for lack of a better word.. sometimes they feel more like catastrophes!) have induced in us, as a family and as individuals, are the real miracle.

So, check back. Over the course of the next month my goal is to blog every day, with the input of my family, about our experience as a part of this therapy program. To see more clearly the changes it induces, in Simon and in us. To share our experience with anyone interested, and to share the unexpected miracles that can happen, that will happen, under constraint.

3 comments:

  1. I'm wishing nothing but luck to all of you in this journey! Hang in there! You are some awesome, strong people, and I'm hoping this pays off!

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  2. I love you all and think this is a fantastic thing you are doing. We are here to support you in any way you and your family need. You are an amazing and beautiful woman and I am not at all surprised that you are doing yet another thing to help make the world a better place. Love you, Jessy

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  3. Hi Laura! Just wanted to stop by to say that we're thinking of you and will be reading along as you embark on your journey! Sending lots of love!

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