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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.


Jim said...

Thank you for sharing.

Normal is what I do everyday is my normal activity. This may not be normal for others but it is normal for me.

So, its are to define "normal" nowadays. We may have alot of things in common but we all are different regardless.


Terri said...

You are a powerful writer. It is heartbreaking. My daughter who has Down syndrome is now 14. She is included and has been well treated (not because she is anything like "normal")

The culture of the school as set by leadership makes a huge difference. I think the more diversity/inclusion the better kids do--my other kids hang with very diverse crowds who are not harrassed either.

It is so scary and hard, but for us a life of segregation is also unsafe and unthinkable...

Relationship-building is our best tool, I think. I don't put my faith in places or systems. We have spent time since pre-school making relationships with kids, families and others in the district one by one--and those kids go to bat for my daughter still. So far, so good.

I can't say I don't worry. Wish I could...

Anonymous said...

I have been asked to blog about what I think parents with disabled kids should know, and I haven't done it because I couldn't figure out how to do it without unintentionally offending someone. But you have just helped me define what I want to say.

The biggest mistake I see parents making is thinking that it is their job, their goal in life (or in the life of their child) to make them nondisabled or at least as nondisabled as possible. This sometimes means walking at all costs, learning print instead of Braille even if as a print reader they will always be compromised, being verbal instead of using sign,etc. Anything to get to that goal of "normal" where normal = nondisabled.

That isn't the job of parents with kids with disabilities. Their job is the same as all parents, to help their child reach his or her full potential. To help them have the most meaningful access and function, the best health, the best way to communicate, the skills and opportunity to be happy.

I have often wondered about your goal for Ellie to walk. And again, I am not there, I don't know Ellie or you or what the specifics of her situation is so therefore, I know nothing.

To me, it would seem that walking is only as important as Ellie wants it to be. If it is the most functional way for her to get around...the most efficient and the method that gives her the most freedom then it is a good goal. If, in addition, it is helpful for her overall health, it improves her health and thus her quality of life, it is not painful, then it is a good goal. If she likes to walk, is motivated inherently to do it (not because she gets praise from others for it) if she thinks it is important, fun, and her best way to get around, then it is a good goal. (I have noticed that you say that Ellie loves the pony walker, but also that she has pain. I don't know the answers to these questions, but these would be my criteria. I know there may not be easy answers to these questions.)

If the only goal for walking is that, well, isn't that what we are supposed to do because that's normal? That is not a good goal. If it causes her pain, it may be bad for her health long-term, and it will never be her most effective way to move about, and more importantly, if she really doesn't want to do it...then maybe it isn't a realistic goal. (Or it would just be something she works on for a bit just for excersise, not for the end goal of walking.)

Anyway, normal is what is normal for you, not anyone else.

Lisa (twinklelittlestar)

David said...

Great post, Kathryn. Very thought provoking. I agree with the commenter who said that separating kids is not the answer and that the culture of the school is set by the adults. Thanks for the links, and I'm glad my CP post was helpful to you and Ellie.

barnyardmama said...

The thing about the walking goal is that it's everyone's goal in the beginning. It's hard to know when to let go of a goal. When do you decide that some battles aren't worth it and some are? I think that's the conumdrum of so many special needs parents--balancing treatment/therapy with human dignity. It's always a balancing act and like you say--sometimes we succeed and sometimes we don't.

I never sent you an update about Charlie.. . I'll go do that now.

terriblepalsy said...

This is a great post Kathryn. Congrats on the book too - it's on my list of things to buy.

Each time I hear about violence against children/adults who have disabilities, my heart skips a beat. How can I let Moo go into a world where this occurs? Especially given that he is least able to defend himself. i think I'm going to have to find a martial arts class for him to take - but is this the answer?

Kathryn said...

I agree that it is the adults who set the tone in a school and community in terms of the children's behavior. I think so much more can be done by way of educating people about differences - physical, psychological, cultural. It's all important.

Terri - that is so critical - building relationships with people in teh community so that they know and love your disabled kid. I try to do that as much as possible though it's tough because Ellie doesn't go to the local school. But still it's one of those comments people make sometimes that rings in my ears for a long, long time. Thanks for that.

David -your post helped allot. I need to read it again - so much to take in.

Jacqui - I know another kid with gross motor issues who benefitted a ton from taking martial arts - but I agree- that shouldn't have to be the answer. Though I am sure if all disabled people were wheeling around packing specially fitted guns or something like that people would think twice before assaulting them. Sad that it should come to that.

Lisa - I agree with you about goals and measuring them against the child. That's the whole watch the baby thing. I have to always remember Ellie is the leader here- not me. If she finds it too painful to walk then we will just get her the best power chair we can. It's about her happiness all the time. I look forward to reading your post.

Jim -you are right there are many shades of normal to begin with.

Becca said...

I have learned over many years that my son would never fit in anyone's definition of "normal". My son has his accomplishments and his setbacks. I have never seen him take a step. And while in a perfect world that would be a wonderful thing to see, I know that it is not something that I will see. Just as with ever hearing him say Mama. Just isn't going to happen. I have to change what my definition of normal is. For me, it is him coming through scoliosis surgery in a manner that I would think would have me in pain on a much worse level than he exhibited. He bounced back and healed much quicker than the doctors thought that he would. I wonder sometimes if that wasn't because he could not grasp what was happening and therefore couldn't focus on the pain long enough to let it bother him. Then he had his hamstrings lengthened. All these things that I cannot fathom having done to me, he goes through. He may not be able to tell you by voice that he is unhappy, or hungry or wet or any number of other things, but I would venture to bet if you are around him for any amount of time, you will know exactly what his needs are because he will get your attention.

What is normal, anyway? Even at almost 44, I still ask myself that all the time!

Susan said...

This is a beautifully written post!