Once you have a child with a disability your outlook on everything changes. We have no idea what Peyton’s future looks like. Really, we have no idea what the future looks like for any of our children but we know for sure that Peyton’s is uncertain. One thing we really worry about is Peyton being ridiculed or ostracized by other children especially once he begins to transition in to a chair. While we were treated really well by the elementary school teachers and administration at their prior elementary school, we made the decision this year to change schools. There were several reasons, some based on curriculum, some on philosophy but for me I had another reason. Their new school is K-12. Peyton will not have to transition to a new Jr High or High School at the same time his body may be transitioning. I didn’t want him to have to explain his “story” at each new school and possibly be bullied or ridiculed by those that haven’t been with him from the beginning and have an established relationship with him. I realize that this may be a false theory but I need to try to place him in “safe” and “friendly” environments. Knowing his older and younger brother will also be with him gives me a sense of security. He also has friends from his previous school.
Last week we met with Peyton’s teacher, the IEP coordinator, Principal and nurse to discuss Peyton. Prior to our meeting I gave them a run down on his condition and personality. This is an excerpt of that email that explains what we deal with and how challenging it is to moderate the disease with his age and ambition:
He is a SWEET, BEAUTIFUL child with a HEART OF GOLD and a SMILE THAT WILL BRIGHTEN UP A ROOM. He is also very, very BRIGHT. He is a perfectionist that gets frustrated easily. He was put on steroids last March and we have noticed an increase in angry outbursts when he is frustrated. His 1st grade teacher would have him take a walk to the water fountain or around the flag pole to distract him. Sometimes he can’t stop. He’s not mean just upset. We have also found its worse when his blood sugar drops so he was allowed to have a snack bag in class in case he needed food real quick. Also, all the meds he takes in the morning make his belly hurt or feel nauseous and a quick snack will help.
Most of all we need to be VERY VERY careful with his muscles and bones. To look at him you really can’t tell. He is small but that is about all you notice. Unfortunately his body is betraying him and basically eating away at the muscles. Each time he “tears” a muscle (which people do every day just in normal activity) the muscle is replaced by fat instead of regenerating as a healthy muscle would. He can walk up stairs but he shouldn’t walk down. It’s the downward motion of stairs, hikes, etc. that cause tears. He shouldn’t jump, run, or do all those other fun things 7-year-old kids like to do. It’s extremely tough managing his being a kid and playing with friends and what is best for his body. Sometimes I allow being a kid to overrule. We do have to be very cautious of his bones. The steroids cause them to be more brittle and the disease causes a loss of Vitamin D and Calcium. If he breaks a body part (falling off equipment) he would need surgery to have a pin put in it (casts are not recommended). This could also cause the loss of his mobility as healing is more difficult.
Trust me, it’s all I can do not to put him in a plastic bubble but my husband and I want him to have a “normal” childhood full of friends, laughter, knowledge and experiences he will cherish. Right now his challenges are not as difficult as they could be or may become but we all need to be knowledgeable on the possibilities.
They were lovely and made us feel very comfortable. The next day I received a note that Peyton was playing hard during recess and scared them a little. I like that they are concerned about him. I can’t say it enough, it’s a struggle…EVERYDAY! I wrestle with getting him an electric scooter now even though technically he doesn’t need one but to preserve his muscles. Once the muscle deteriorates, there is no turning back.
So far we do not regret our decision to change schools. Both the boys are very happy. Peyton told me how much he LOVES his new school. We just take each day at a time and PRAY for a miracle.