Here is a letter I wrote on behalf of Joey to share with his teachers at school. It will help them learn more about Joey and all the things he can do. I have found that by sharing information about Joey and being open and honest about his condition works towards his benefit. The more the teachers know about Joey, the more they will be able to help him reach his goals. With each letter I attached a CdLS brochure to help promote awareness about this syndrome.
To My Teachers:
My name is Joey. I am 5 years old. In many ways I am a lot like most of the kids in your class. I have a mom and dad. I have 2 older brothers and 2 younger sisters. I have grandmas, grandpas, aunts, uncles and cousins. They all love me very much. I live in a house. I have my own room. I have 3 cats. I like to play. I like to go to school. I also like to learn. But I am also different from the other kids too. I was born with a rare condition that is called Cornelia de Lange Syndrome. I am not sick. I am a little bit smaller than other kids my age but I am healthy. Kids with CdLS have a lot of similarities. We share the same facial features and have many things in common. If you would like to learn more about CdLS, please visit www.CdLSusa.org.
Now that I am in kindergarten, I am busier than ever. In addition to going to school, I get to go to a fun place called Wiggles & Giggles 3 days a week for physical, occupational and speech therapy. They help me in a lot of ways. I also get to ride a horse called Buttermilk once a week. This helps me get stronger too. My big brothers play sports so I also get to go to a lot of baseball, football and basketball games. We are a busy family!
Usually I am very happy. Some things that make me unhappy might be that my braces have gotten uncomfortable on my feet. Will you take them off for awhile so my feet can stretch? Or I might be hungry. I can eat crackers, cookies and other snacks myself. Could you help me with my lunch? I also might be tired. Sometimes when I get tired I get frustrated and mad. Will you take a few minutes to play with me or sing me a song? This always helps me feel better.
Even though I have a disability, I am able to learn a lot of things. I just need a little extra time and help. I may not be able to speak but I can communicate in other ways. I know how to use PECS and I am in the process of learning how to use my new Dynavox. Sometimes I will tell you what I want or need by taking your hand and showing you. I like to figure out how things work and the easiest way to do things. My mom says I am very good at this. I like building things, playing with blocks, music and playing with my classmates. I also like light switches. I like walking with my walker and I am able to take some steps on my own. I always like to go to school and I have the ability to learn new things. I know other kids with CdLS that can talk, read and write - it just took them a little longer to do these things. I know I can learn to do these things too. All I need is your help. Thank you. I am happy to be in your class!