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Monday, February 11, 2008

The Goal to Be Normal

On the surface this goal generally means things like these:

to walk
to talk
to be entirely self sufficient - including feeding oneself, toiletting oneself, and in adulthood taking care of oneself - though that last one has all sorts of variations
to do the same things most of the other people you see on the street do like:
to go to the same school as your neighbor's kids
to progress through school at the proper year
to be able to run, crawl, spin, turn and all other wonder of gross motor skills
to be able to write and draw and manipulate things with the fingers - fine motor skills
And psychologically:
to love and be loved
to not be a sociopath and harm others

Under the surface the goal to be normal means these things:

to be worthy and valued by society (ever hear that phrase to be a contibuting member of society?)
to be loveable
to be understandable
to be happy
to be valued (kind of an add on to the society one)
to be worth medical care, educational investment, and society's tolerance in letting you safetly exist
All in all to be considered a member of the social group with a voice to be heard

So what is this thing called normal? Why do we try so hard to define it so very narrowly?

I met with a group of parents this weekend who all have a kid in Ellie's class. All with special needs. All outside these narrow confines of normal. All great parents who have stood by their kids and had to fight and fight and fight and fight some more in battles as varied as a box of Bertie Bott's Every Flavor Beans. So many battles.

I have also been thinking about the goals for Ellie, especially getting her to walk. I am a bit perplexed by it. On the one hand wanting to give her every opportunity so that if she can she can be upright like everyone else...

On the other hand I don't want the goal to be for her to walk if it twists her spine up and crushes her organs in the process. That is not a dream either. I have met a few parents and their scoliosis ridden children who have paid this high and painful price to achieve something close to normal. Parents proud and thrilled that their kid walks. Stories of hours in the stander. Having to leave the room because they couldn't stand the screams from their kid as their spine shrunk onto itself because of muscles to weak to keep them up and they twisted into a shape that made them veritcle and more transportable. Yes - there are parents out there like that.

It horrifies me.

But this weekend, the thing I found most wonderful about our little gathering was that each of us appreciate our own and each other's kids for who they were right then and there. Not for what they will become. Because they all have neorolgical issues and we all agreed that the doctors can't predict outcomes - especially neurologists. I was in a situation where the parents all knew their kids really well. The bonds were tangible. There was no crying or fighting and lots and lots of play and fun. I was in a situation where wipping out the g-tube to feed your kid or give them meds was done with out blinking an eye. I was in a situation where none of the kids was verbal but all were communicating quite well and every adult understand what they wanted - a toy, a hug, enteratinment.

It was nice. It was our normal.

It's sad and just plain wrong when the under the surface goals of being normal seem to have to relate to surface qualities of looking like everyone else and doing what everyone else does. It was a given with these parents that we love our kids and respect them. It is a given that we are all fiercely protective. Sadly we all had stories of cruel comments and unkindnesses directed at our beauitiful children - Ellie and Xavier being the oldest at the ripe old age of 5. Can you imagine being mean to or making a snide comment about a child? A toddler? Someone under the age of 5? It's unbelievable.

So, that is my question. What is the goal of normal? Why is being normal so valued? I am not sure Walking is it.

David, very, very graciously answered my question about high tone here. Thanks David. I realize it's the least favorite thing you like to blog about. I am very grateful. You have had me thinking every day since you posted about it. You have reinforced my belief in tummy time.
I am always impressed when I see pics of you sitting so straight or lying prone propped up on elbos reading as you have a bite to eat. I can only hope that Ellie will be so strong some day. I am in the shade of your parents who protected you so well and helped you be you based on you and nothing else. It's threading a needle to do that so well, to understand when to intervene or not intervene. I am constantly threading that needle. Some days I feel I have drawn blood and missed the mark, other days I feel like I have gotten Ellie through to safety. It's hard.

Violence against people with disabilities is alive and well. It's violence against people who can't defend themselves. I wonder if, as we integrate more children with CP into our public schools if more incidents like this will happen? I hope we can do a better job as a society to educate ourselves and our children about differences. About not fearing differences but respecting them and celebrating them for all the learning and wonder they bring to make the world such an fascinating place if you have the eyes to see.