Wednesday, October 31, 2012
Saturday, July 28, 2012
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.
Monday, March 26, 2012
Tuesday, March 6, 2012
There are days when I sit and try to imagine my life as "normal" and for me that means that James doesn't have cerebral palsy. It means that I don't understand medical lingo, or have medical equipment in my home. It means that my calendar is filled with t-ball games instead of doctor appointments. But that isn't what my normal is supposed to look like and that is hard to wrap my head around as James gets older. Now that surgeries ( for now) are past us, I have been searching for that elusive state of normal. I have come to realize that I don't even know what it is supposed to look like for use anymore. We are trying to step back some of James's physical therapy appointments and let him build strength by doing those typical 4 year old activities. The PT quote was "Lets let James be a normal 4 year old for a while" How?? Normal doesn't come with a home program, checklist or follow up appointments to make sure that I am doing it right.
Society says normal is a perfect able body, but what does normal look like for a family that has a 4 year old that has CP due to a intro uterine stroke? I don't have an answer to myself because I am coming to realize that normal isn't on the outside, but instead normal is a state of mind. Normal is feeling ok with spending the day feeding the ducks in the park instead of worrying that James is missing a PT appointment. Normal is watching James play with his toys and not feel the need to keep a running checklist what movements his body is or isn't making. Normal is enjoying the gift of motherhood, instead of feeling like I am failing everyday if I miss a stretch.
So today I am going to do 1 normal thing with James..........well our version of normal :-)
Wednesday, February 22, 2012
James was also starting to show symptoms that were really scary. See his left eye here. It had wandered out so far to the left that the doctor at the clinic was very concerned and she sent us directly to the ER. They called and had us preadmitted when we got there. On the way over to the ER I glanced at the report she sent with us and it said "Possible case of Meningitis" Well needless to say my foot hit the gas a little harder.
Sunday, February 19, 2012
This is about the time in the program that I get homesick. I am starting to feel some of those feelings but I am also feeling really excited about James' progress. This being our 3rd time doing the Spider program I can truly say that it is worth every ounce of homesickness, every penny spent, and tear shed. In 3 short weeks I watch my son's body transform and his confidence grow. This last week is the hardest but it is also the best. I can't wait to see what the final review shows.
I am already planning what we are going to do when we get home. And for me this is the best part. I am really planning on doing some FUN things! James will still get once a week PT at school and once a month we will come down here to b-ham for PT. But we are going to do swimming and horseback riding and activities that are fun but keep allowing James to develop. And I can't wait!