A couple weeks ago I shared a letter I wrote on Joey's behalf to give to his teachers. We got a great response - everyone feels comfortable and they know the lines of communication are always open. I also purchased an inexpensive notebook which we use to communicate back and forth with Joey's teachers every day. This way they always know what time he will be picked up, what he's eating for lunch, etc. It is also a great way for the teachers to write about Joey's day so we know how he spends his time. It is a wonderful communication tool. Anyway, tomorrow Joey is the Star Student of the day. Each child in the kindergarten class gets a turn at Star Student. They are able to bring 2 or 3 things to class to show the other kids and they are able to tell them a little about their lives. I wrote a "kid friendly" version of his teacher letter that will be read for him. A copy will also be sent home with each child with a CdLS brochure attached so their parents can learn more about Joey too. This worked well in preschool last year so I'm hoping it will work well for kindergarten too. Educating others about CdLS helps win the battle against ignorance. Here is the letter Joey will be sharing:
Hi! My name is Joey. I am one of your classmates in Mrs. Emerson's class. In a lot of ways I am just like you. I am 5 years old. I have a mom and dad, two big brothers and two little sisters. My brother John is 16 and is in 10th grade. My brother Tommie is 13 and is in 8th grade. My sister Emma is 4 and my sister Abbie is 3. They go to preschool. I have 3 cats named Reggie, Blackie and Casey. I like to play with toys and go outside. I like building blocks and music. I really like to play my piano. My big brothers play lots of sports so I get to go to lots of footbal, basketball and baseball games. They are a lot of fun! But you might have noticed I am different in some ways too. I was born with Cornelia de Lange Syndrome. I am not sick, I am just taking a little longer to grow and learn some of the things that you already know how to do. I just learned how to walk by myself this summer. I get to go to a fun place called Wiggles and Giggles and a nice lady called a physical therapist is helping me to learn how to get better at my walking. I don't know how to talk much yet either, but another nice lady called a speech therapist is helping me to learn words too. So don't be upset if you talk to me and I don't answer you back, I am still learning how to say things. Sometimes you might see me in a blue chair when I come to school. Don't be afraid, it's just something I can ride in to help me get around better. If you have any questions about me, please ask Mrs. Emerson or Mrs. Weiser and they will help you find out what you want to know. I am happy to be your classmate. I know we will have lots of fun together!
In other news, now that school has started we are busier than ever. We have had a lot going on - the boys started back to school and the girls started preschool ( there were tears - only on my part though!). We got a new roof on our house and been to watch John play in his first varsity football game. Joey went to a pediatric ENT last week and doesn't have to have his tonsils out! Yay! When we had him at clinic in July, the doc noticed one of his tonsils was enlarged so we followed up with an ENT visit. There are no growths or abnormalities and his tonsils don't look diseased so that was good news. One is just larger than the other. Unless that starts to give him problems with eating or breathing, they can stay put for now.
I will update with pictures of all our happenings later this week. In the meantime, you can catch me on Facebook - that's where all the action seems to be and it is a wonderful way to connect with other CdLS families. If you haven't joined I encourage you to do so. It is an awesome source of communication and support. If you and your family feel alone in the daily battle of having a child with Cornlelia de Lange Syndrome, come on over - you will find lots of friends. Oh yeah, and I have a farm or two that keep me busy over there too!