I am eager to tell you that I have been thinking about Christmas gifts. I have given them to my caregivers and family. I love to be able to give them something from me because too much of my life is about receiving. I feel a lot of contentment in my heart and I am so glad for my family and friends. We will be having everyone to our house on Christmas day.
I thought that might help to write about gifts that I have been given in my life that have helped me. It is a question that people ask me sometimes about what to give a girl who has Rett Syndrome. They see what she does with gifts they give. Sometimes what they know in their hearts about her intellect isn’t shown in her behaviors, so they give her something to stimulate her intelligence and she chews on it. I am eager to tell you that chewing is not a sign of low intelligence. I have given much thought to how to share this, so I hope it is helpful to you. If people only look at Rett girls behaviors they will assume that she likes baby toys and things that are shiny or baby songs that entertain. I have written about some of this on My Rett Body page, but since it is Christmas and there are usually gifts, it’s something I want to help you with.
We are not going to be able to stop our bodies from doing their actions. I drum on everything that my left hand can touch. I chew on any thing that my right hand can put in my mouth. It is so frustrating and very embarrassing for me because I know that people are assuming that these are baby behaviors. It is not as it appears. I can tell you that if I am stopped physically from chewing and drumming, it creates a lot of stress inside of me. I can’t help those behaviors, but if my mind is stimulated at the same time by a book, or some conversation or a movie that stimulates my thinking, I don’t feel the stress of my behaviors. When I was little I had a toy that spun and had a mirror on it. I would spin it all day long as long as it was near me, but I didn’t want to do that. I just couldn’t stop myself. I couldn’t tell my Mom that I wanted to have it taken away. There are times when it calms me to have something to fiddle with, but I don’t want to do it for hours. I am asking you to think about that for your Rett girls because we will fiddle all day long if we aren’t interrupted sometimes, but our minds are the things that need to be challenged. We are capable. We are not little babies.
I learn a lot on my computer. I love to study things. I enjoy learning about other cultures. I love visiting with other adults. Even if I can’t contribute a lot to their talk, I learn by listening. I love music, but not music for little children. I love classical music. I love spiritual music. I love country or anything that is calming. So that is my idea. Give us something to fiddle with that works for us, but keep our minds from going numb with boredom. Give us a reason to hope this Christmas. Give us your belief in us.
Love, Karly
Inspired By Love 