Battles

So as a mom of a special needs child, there are MANY daily battles I am learning about. Lately, our battle is gymnastics, yes gymnastics. What once was a cute idea and something I thought would be fun for Carsten and help him learn to walk and get some socialization has turned into a major battle. The process started a couple of months ago. Mind you the class has been going since January and the kids have been attending every week. Just picture them dancing, singing, and having fun with their moms, and here we are still just trying to get IN the class.

I decided that it's worth it for Carsten because I think he will really enjoy gymnastics, so off I go to do the requirements for admission, little did I know... It all began with a EFMP "meeting" to determine Carsten's "special" needs. So, I go to the meeting, sit there, and answer the questions to about 10 people so they can determine that he's "o.k." to do programs here on post. Then when I thought we were set to go, the lady at the front desk says, oh wait, one more thing, you have to get his pediatrician to fill out a physical. WHAT! A physical! You don't know what that means in our world I say, that's about a billion more steps for us. It should be easy, very simple she says. Yeah right, I leave very discouraged but determined for Carsten's sake.

Four weeks later this is what we're doing, still trying to get the form filled out for Carsten. I have been to the pediatrician 4 times and have yet to get it!!!! I think we need to do a neck xray to check for atlantoaxial instability she says, (some children with Down Syndrome have unstable joints between their first and second vertebrae limiting their participation in sports because of the risk of neck injury) I just don't feel comfortable with him doing rolls and flips and such and wouldn't want to be responsible. Oh for heaven's sake I'm thinking, I mean do you really think an 18 month old is going to be doing kart wheels!! So today at our appointment she put a call into Children's Mercy Down Syndrome clinic downtown to ask a doctor there what they thought. Now I'm waiting for the call back to either schedule the neck xray or go ahead with the class. Either way, I'm thinking, I still don't have that stupid form in my hand so we're not any closer to starting gymnastics. By the time we get this form filled out I'm sure we'll be packing up for Atlanta! I think at the next appointment I'm going to pull some tears out of my "special needs" mommy bag of tricks to get things rolling a little faster:)

Seriously though, it never ends and what seems to be a simple procedure turns into a monstrous ordeal. I believe that part of it is because people automatically limit persons with special needs. They assume that they can't do things because of their disability. I remember when I used to work for Stephen in college. Stephen had Cerebral Palsy and his speech although intelligible, was impeded. When we were out together people would always turn to me and ask me a question instead of directly to Stephen. I finally realized it bothered him and learned to say, I don't know, why don't you ask him yourself what he wants on his pizza!

Carsten is a talented little guy and I believe he's going to amaze us all. I just don't want anyone to say he can't do this or that because of his Down Syndrome. I don't understand why every little thing has to be such a big deal. I'm not upset with the pediatrician, I understand her caution, just frustrated and sad for Carsten that things have to be so difficult and when he gets older I know he's going to be the one fighting these battles. I only hope I can train him well and teach him that anything is possible for him! I love you Carsten, happy late 19 month birthday!


Habakkuk 1:5 "Look at the nations and watch, and be utterly amazed. For I am going to do something in your days that you would not believe, even if you were told."