This has been a wonderful week. I feel great. I visited my friends who are twins with Rett Syndrome. It was so great to see them. They are healthy and doing great. They just got back from the North Shore of our state. They both felt so content while they were there.
I wanted to share something that I think is so important for my life. It may also be helpful to you. While visiting with my caseworker this morning, I realized that what everyone needs for their own life is purpose. We were talking about how little there is to do in our community that is specific for adults with physical disabilities. It seems that most of the activities offered to adults with disabilities is for anyone with any type of disorder. We are all grouped together. They believe that I would be interested in going to the fair, or making brownies from a mix, or shopping once again, or bowling or doing something that involved a craft that I can’t do. They don’t make any activities for adults like me who have high intellect and yet require much assistance in order to be involved. I can’t go anywhere alone. If I didn’t have the ability to communicate my needs, I would be in a program for adults that have mental disabilities because of my diagnosis. I know of others like me, who struggle to be understood and are very isolated even when we are with a group because if we don’t have someone with us who can help us communicate, we go unheard and misunderstood.
I have so much joy today because I am able to be at home with my Mom and writing this during the day, instead of a program that would have drained my life right away. I think of my other Rett friends who can communicate and even though we struggle with our bodies, we are all intelligent. I know there are others who are capable like we are, and are being believed to be intelligent even though they are yet without a voice.
I encourage anyone who has someone they know with Rett Syndrome, to not give up on them. I am so much better now that I can communicate in my health and my mind and my spirit. I don’t believe that they people who make decisions for those of us with great physical challenges know how to best help us. It is individual and it starts with those who are closest to us believing in us, and giving us opportunities to increase our understanding of this world we live in. Those who help us discover what our gifts are, and give us companionship along the way.
My heart is content today, and I thank my family for giving me a great life, one that has purpose, and is full of love. I send you peace today. Love, Karly
Here are some of the things I did this week: