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Saturday, July 28, 2012

He is James FIRST!!

I read an article from another blog mom that talked about how her children are having to deal with questions about being adopted into a multi-racial family. It got me thinking about our journey and the things that people say to and about children with different physical abilities. It made me want to share my thoughts on what it is like to be on the this side of the story.

Before James, I used to think that this world was pretty accepting of the special needs population. I saw handicap stalls everywhere and there were always those special blue parking spots at every business with a ramp. What else could they need, right? Little did I know that God had big eye opening life experiences in store for me when James was born. See, when I look at James I see an awesome, funny, smart, handsome little 4 year old. He just so happens to move differently than other 4 year old children but it certainly doesn't define who James is.

In college I took a child development class for my teaching degree, and one day we had a guest speaker that came in to talk about "Child-First Speech" At the time I remember thinking that this was silly. What did it matter if I said "That is the child with cerebral palsy" instead of "That is the cerebral palsy child"   I mean that is just arguing semantics right? Are the parents or child really going to feel different if I change the wording around? Well, I am here to tell  you it DOES matter and I DO notice. I am not saying that everyone that uses a diagnosis to describe someone is being intentionally rude. And for that person it is a once in a while thing. They might see someone with a different physical ability and use the disability to describe who they are talking about and then move on. But when you are on the other end of the descriptor and it is your child that is being described over and over by such a surface and small part of who they are it gets old really quick.

Take me physically for instance. I am a big girl and could certainly stand to lose weight. I know that when people describe me to someone they are going to describe my size as well. But do you think anyone would go to my mother and say "Oh, you are the mother of that fat girl". No! of course not. They would use my name or some other describing feature about what I do for a living or maybe my personality. So then why is it that people feel it is perfectly ok to come up to me and say " Oh, you are the mother to that little CP kid" I get that at LEAST 3 times a week...usually more. Like CP is all that James is or will ever be.

Right now James doesnt notice, but I do. Right now James doesnt see himself as "different". And I hope to keep it that way for as long as possible. So why would a parent allow a child to come up and ask him or me "What is wrong with you?" or "What is wrong with his legs?" When did it get ok to ask such personal and medical questions??? I have even had parents tell me that that they encourage their children to ask and that they dont see anything wrong with it. My response to that is this..... I totally agree that children are  naturally  and innocently curious about things that are different from what they are used to. Here is where we differ of philosophies.  It is the parents role  to educate children that we are ALL different and it different doesnt equal wrong. It is NOT my job to educate your children about what is different about my child. If they have questions, then you should answer those in the privacy of your own home. You should stop your children from asking those personal questions and redirect them to more appropriate questions.  Just like I will do with my son when I explain that sometimes people are rude, but we still need to be polite and just tell them that you dont feel comfortable answering such a private question.

I guess I look at it as just simple manners. You wouldnt start asking another mother within the first 5 mins  you meet them personal and medical questions about there "typical" child, so dont do it to mine either. Just because James has to wear his difference where everyone can see it, doesnt take away his right to privacy. It is not ok to walk up to a complete stranger and the first question be "Hi, what is wrong with him?" Honestly, I dont ever mind people asking about James and how he is doing. I love sharing how amazing he is. But that is not ALL James is. CP is a part of his life and yes, it has altered his path a great deal, but that doesnt mean that he is any less of a human being because of it. I love to share his progress but I also want to talk about WHO James is. I want to share that he learned to read a new sight words today or that he got a cute new haircut. I want to talk about the funny things he says. I dont want  to have to give a medical laundry list to everyone we bump into, just because they are curious.

So life lesson time here... When you bump into someone with a child that is "different" be a model for your children and instead of zooming in on what is different between your child and their child. See the Child First and start talking about how they are alike. ( See that class WAS useful) Your children will learn how to be accepting of my child by how YOU interact with him.  We are just mothers with children...just like you. We have more in common than we have differences I promise.

8 comments:

Bill and Melodie

Great post! I get the adoption questions all the time and the worst is when someone asks me if my girls are real sisters. I have tried to teach my girls to always ask me first, even about women they may think are pregnant, it's hard but very important to try! Thanks for reminding me of how much more I need to educate myself and my children!

Bill and Melodie

Great post! I get the adoption questions all the time and the worst is when someone asks me if my girls are real sisters. I have tried to teach my girls to always ask me first, even about women they may think are pregnant, it's hard but very important to try! Thanks for reminding me of how much more I need to educate myself and my children!

Gmama Jane

Well said my daughter! You know I feel the same way. I like to think that the majority of people asking questions are not intentionally being rude or hurtful but the more I'm out and about with James I'm amazed at the personal questions some people feel it is Ok to ask! It goes back to manners. Children can't learn manners without having them modeled for them by their parents and caregivers. I think we have a long way to go in educating people about the special needs population...it not only involves the person with the disability but the main caregivers. I couldn't have said it any better. Now, the question is...does your post make people revaluate their own behavior or do they get defensive and make you feel bad for having told the truth. I've watched you have the patience of Job with most people and knowing you I have been impressed with your restraint. Sometimes things just need to be said and let the chips fall where they lay. I have been guilty myself in the past and I feel extremely ashamed of myself. It took having a grandchild with special needs to open my eyes and this is coming from a veteran special ed teacher!!!!
I think James is smart enough that in time he will stop people in their tracks with his "on target" response to their questions!!
You are preparing James for the real world, the good and the bad, and I believe with all my heart, James will rise above it all!

Anonymous

I understand what you are saying but why is it okay to tell your son that the other child is rude, but not okay for a child to ask innocently what is different about your child?

"You should stop your children from asking those personal questions and redirect them to more appropriate questions. Just like I will do with my son when I explain that sometimes people are rude, but we still need to be polite and just tell them that you dont feel comfortable answering such a private question."

I have a child with a disability as well, so I understand what point you are trying to make. I just think that we need to be accepting of those children/people that just don't know better. I don't think that people are trying to be "rude", just curious. And as the person, or mother of the person, with the disability we can help teach them in a nice way. Something like, it is a private matter but James is doing _______(fill in blank), then change the subject. Changing peoples behaviors is difficult, but you can teach them to not something "rude" to someone else in a nice way.

I think that you are a great mother and James is an awesome kid. I just don't like to tell my children bad things about other people that I don't even know. I know it gets old but we have an opportunity to educate people and help them become more sensitive to people with disabilities.

Keep on being a great mom and know that James is smart enough to know who is trying to be mean versus those who are just honestly curious. He is a strong child who, with your help, will be a strong man!

Sweet Baby James

Dear Anonymous, we certainly disagree on this one. I do believe you missed my point a but I do see what you are trying to say. I feel that parents should teach their children to ask those personal questions to their parents in a private manor. My main point is more about education to the parents than the children. The children certainly are innocent in their questions and that is something that we will teach James to respond to. But to teach my child that it is his responsibility to educate others about his personal medical history just because they are curious or they ask is not something that I am not prepared to do. And 9 times out of 10 the questions are never mean spirited , that isn't what I was saying. I feel that sharing with people that something are not polite to ask is educating. Thanks for sharing your point of you as well.

Kristen

Although we've never met in person, I am thankful we met through TPP and am proud to call you my friend, ME. You're such an amazing mom and are blessed with a perfect little boy!

Susan Phillips

I am sure there were many questions being asked of parents or others when James modeled in the fashion show last Saturday at Belk's in his Alabama walker. All that need be said in a situation like that is that James has a harder time getting his legs to work right- but look at that he is up there modeling with all ya'll kids and having a great time laughing and cutting up afterwards so I guess he can do pretty much what you can and he looks like he is having a great time! Are you?
Now in everyday over and over situations I can see where it would get old really fast if everyone you see keeps bringing up James' differences over and over again when you are working yourself every second of the day to give James the right to be seen by others as you see him-as he is-perfectly James who should NEVER be excluded because he has to work harder. And you are right on target there as far as explaining medical diagnoses everyday! What's wrong with him instead of what exciting accomplishment just happened 5 minutes ago! That would get real old really quick.
God gave you James for a reason. You are a super Mom for him. I know you must have days that you feel you just cant go on. You really are amazing with James, Mary Ellen. Keep up the good work even when you are feeling weak or low. God will continue to give you strength. What a wonderful world this will be when we are all able to look past our weaknesses and embrace what is amazing about each of us.

Cerebral Palsy Family Network

First, let me say that James is adorable and he looks like an amazingly sweet kid! Secondly, I hear where you're coming from, and I know it can be really frustrating when people don't understand the full impact of their words. Hang in there! If you ever need any medical, legal, or general quality of life advice, check out some of the resources at Cerebral Palsy Family Network. I think you'll find it helpful, and it provides a great sense of community with other families affected by Cerebral Palsy!

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