Friday, March 18, 2011

Cerebral Palsy Awareness Month

March is Cerebral Palsy Awareness Month. That's right. There is such a thing. I've been thinking about this a lot the past couple weeks. I wanted to post something right away -- to make people...well...aware. But, it just never happened. Too many other thoughts on my mind.

And honestly, I've never really associated Samantha with Cerebral Palsy (CP). I know she has it, but it's so secondary to who she is. If I'm going to label her with a diagnosis of any kind, it's Chronic Sweetness and Lovable-ness (CSL as it's also known around these parts).

I remember one day reading a report from her neurologist. Written on the paper, he mentioned cerebral palsy. I was so worried. I knew that name, but I had no idea what it meant. At our next visit, I wearily asked him about it. He informed me that Cerebral Palsy is an umbrella diagnosis. It's a diagnosis that really just explains a group of symptoms.

Samantha has microcephaly -- the jury's out on what her actual diagnosis is, but for now it's the same as what it was the day we met with the geneticist at Primary Children's Medical Center. For now, Samantha has Primary Autosomal Recessive Microcephaly. I have just spent a good 45 minutes scanning different articles, looking for something that would better explain her diagnosis, but unfortunately, they just left me depressed. So, I won't share that annoying stuff. BUT, what I do know is that we were told upon her birth, due to her small brain size, she wouldn't amount to much. And what we DO know that she is very much MUCH. She's more MUCH than most I know -- and they have a "normal" brain. I'm getting off track here...back to CP...

So, Samantha has a group of symptoms including high and tight muscle tone and jerky movements. It's the way she moves that classifies her as Spastic Quadriplegia Cerebral Palsy with Ataxia. So, what the heck does that mean? It means her movements are spastic (jerky and sharp), it affects all 4 limbs, and she has balance issues. All of this is true.

As I talked with Samantha's physical therapist today, who just finished a very intense course with Billi Cusick (creator of the TheraTog and an internationally known pediatric physical therapist who specializes in cerebral palsy and other neuromotor deficits), she told me about some of the things she learned the past week. I have no references for the information I am about to share.

1. Billi Cusick eats, breaths, and sleeps pediatric physical therapy. I don't know. We'd have to ask her ourselves.

2. Billi Cusick is intense -- in a good learning-a-lot way.

3. Recent research shows that CP, though the diagnosis is because of mobility problems, the real problem is a sensory problem! Whhhat?! This is exactly what we've been doing with Samantha! Sensory craziness. Glen Doman said this in the 1960s, and now research is catching up I suppose. So, she continued, it's important to have them on their feet, on the ground, trying to move even if we think they can't. They need as much sensory input as they can get. That will help the central nervous system and that, in turn, will help with the symptoms -- mobility, muscle, etc. I was very excited to hear this, and she got really excited when I told her more about our therapy. "Isn't it good to hear that there's some stuff backing up what you're doing and the progress Sammy's making?!" she asks. Um, yeeeaaah. 

Very interesting stuff -- if I do say so myself. And I do. My thoughts are wandering. Here was my original point when I started (for heaven's sake Jenny! sheesh):

Things change everyday. Research and funding and blah blah blah changes how we all see things. But it's also WHO we interact with that changes us. When I saw Cerebral Palsy on Samantha's paper, I was so worried. But you know, it doesn't change who she is. She's still my little Sammy and she's adorable and kind and I could just tickle her all day long to hear that laugh. But, knowing she has cerebral palsy -- and microcephaly and epilepsy -- and knowing kinda what that means has deepened my love and respect for her a little. She's one tough cookie. I feel gratitude to have her in our home. And I have such gratitude for those other families that help me feel like we're not so alone in this journey.

So, for all you CP fighters and heroes out there...this month is for you.  I give you all my love and respect.

Tuesday, March 1, 2011

Choosing to Act

How do we respond when someone asks us questions about our kids? Or, how do we respond when someone says something hurtful about our kids? How do we talk to others about our kids and their special needs?

Recently I had an interesting experience. Now I can call it interesting, though at the time it was a mix between hurtful and...well...educational. I was stopping by a friend's home quickly to pick up my phone...yes, it had fallen out of my pocket and for some time I was quite panicked -- not because I couldn't find it, but that Marcus would have even more ammunition to support his claim that I'm always losing my phone! Samantha and Callie were both in the car. My friend's little boy (we'll call him Son) was outside playing with a neighbor friend (we'll call him Boy). Since I was just going to run to the door, I left the girls in their carseats.

The two boys approached the car as I was getting out. They were looking through the minivan's slightly tinted windows at the girls. Son said to Boy, "Her head is really really small. It's so tiny. She's a freak." Did I hear that correctly? He's such a good little kid, I'm sure he didn't just call my daughter -- who has obvious special needs -- a "freak." I mean, he knows her afterall. His mom visit teaches me...they are in church together. No, I didn't hear that correctly.

"Yeah, I know. She's a freak."

Hmmm. Guess that confirms it. I wasn't quite sure what to do in the moment. I was hurt and sad and really angry. But what is the right way to deal with something like this? I was almost up to the door when I heard him confirm what I had thought he said...and my knee-jerk reaction was to defend her. So, I said, "Hey guys, she's not a freak." But they were already riding their bikes up and down the sidewalk again. It was so fast. It happened so. fast. Was my opportunity gone? Yes. So, I decided to create the opportunity again.

I got my phone from my friend and headed back to my car. The boys were close by again and so I said, "Hey guys, Samantha and Callie want to say HI to you." I opened the car door so they could see both of the girls...but then another friend came up along the sidewalk and started talking to me. My opportunity vanished, again.

Had I not be delighted by my friend's presence, this is how it would have went down:

I would introduce Boy (because Son already knows her) to Samantha and kindly continue to point out the obvious. "She is small isn't she? Do you know she's actually older than her sister, Callie?" I'm smiling. This is all very light and happy. This is when I go into teaching mode and explain that she has a smaller brain, but she's learning to talk, and she can walk, and if you make funny faces she will sometimes laugh really hard with you! Kids like making Samantha laugh. I do this when kids at the store stare. It works really well and we all walk away feeling good. But today I was going to add that, "I heard you call her a freak. I wouldn't say she's a freak, just different, though, huh?"

I learned a lot in those quick few seconds. I had never heard someone call my daughter FREAK before, and that stung. It hurt really bad. I know Son's just a kid. But it was still wrong and cruel.  How hard was it to not want to say, "Well, you're a bit of a freak yourself little punk!" in that split moment? How hard was it not to get emotional?

When Samantha was an infant, we got a lot of looks and stares. Most people were kind, but some were unintentionally cruel. I realized during that time that I have the choice to act or react. It's easy to react to what people say...but then don't we often have regrets when we react too quickly? What is harder, at first until it becomes habit and a part of who we are, is to decide to act -- to educate and help change perceptions of what special needs really is.

Early on, for my own sanity and emotional health, I decided that I was going to act. I was going to seek teaching opportunities to help educate people about Samantha and her condition. Instead of walking around the victim of gawking eyes and pointing fingers, I was going to walk around as if I had a treasure (because I do) and if someone was courageous enough to approach matter if they knew how to approach me or not...I was going to give them a slice of knowledge about my treasure. I gradually felt more and more comfortable talking about Samantha until it became no problem.

Even still, when this boy called my Sammy a freak, it hurt and I wanted to react to his label. He was wrong and he needed to know it. But, had I done that, I would have missed the opportunity to teach. Well, turns out I missed the opportunity anyway, but oh well. The theory is still a good one, and one that I stand by. Choosing to act gives me power...and ultimately, more happiness.


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