Expressed by Lorrie Baxter for her son, Kurt Baxter.
Hi! My name is Kurt Thomas Baxter and this is my dog, Precious. I won Precious in a drawing at my pedodontist office in December 1995. Along with getting Precious, I also received a free sitting to have my picture taken with Precious at a studio and this is the picture that I picked to have framed. I also took my brothers along for the picture taking and all three of us had a picture taken together, too. I love my brothers! I am 13 & 1/2 years old now and in the 6th grade. I am also the reason that my mom and dad know about Rubinstein-Taybi syndrome. If I hadn’t been born on September 7, 1983 and diagnosed with RTS on September 22, 1983 they probably never would have heard of Rubinstein-Taybi syndrome. Isn’t this a funny world? How one person can make such a difference!?
Well, I do have Rubinstein-Taybi syndrome and I do drive my family crazy sometimes, but I am usually a pretty good kid. I have to go to a lot of doctors but I’m really good for all of them and they are really nice to me. When the doctors have to do a test or some kind of procedure that hurts, my mom taught me a long time ago to relax and do deep breathing like she did when she had all of us. It still hurts but I do my breathing and tell them when they are suppose to be through! I’m very good for my pedodontist, orthodontist, and all the other doctors that I see. I don’t have to be put to sleep for things that are considered “routine care” because i just behave and let them get it all over with! All of my doctors tell me how good I am for them and I know that my mom is very proud of me for being so good. She talks to me and always tells me everything that they are going to do so that there are no surprises. I hate surprises!!
My mom is on the phone alot talking about me and Rubinstein-Taybi syndrome. Sometimes we are late going somewhere cause she’s on the phone. I just go out to the van and wait for her! My dad and the rest of the family get impatient but they are used to waiting, so we wait! Mom also works alot downstairs in her “workroom” (a place that I’m not suppose to go in to unless someone is with me) and if I’m home my brothers or Dad watch me and try to keep me out of “stuff”! Through the years I’ve had alot of surgeries, treatments, medicines, therapies, and special help. My mom talks about many of these things and hopes to someday write about all of them. Each day she gets her mail at the post office or from our home box and there is always lots of letters for her. When I’m being good Mom lets me see the pictures of all the children that have Rubinstein-Taybi syndrome like me. I can always pick out my “brother or sister” from the group pictures that I see. I have a “brother:” that lives about 90 miles from us that I like to visit. We haven’t been able to visit him for awhile but we send cards sometimes. His name is Wesley and he’s 46 years old and he also has Rubinstein-Taybi syndrome, just like me. We look alot alike and Mom thinks we even act somewhat alike even though he is older than me. Wesley talks but I don’t, Wesley has brown hair and I have dirty blond hair, and Wesley lives in his own house with other people and house parents and goes to work at a workshop and I live at home with my family and go to school. When we go visit my sister in college we will visit Wesley. I like to call him my “brother”!
When my parents were told that I had Rubinstein-Taybi syndrome they were given a list of all the things that would be wrong with me and were told about all the things that I would probably never be able to do. Well, I do have alot of “characteristics”, medical problems, behavior problems, and it takes alot of work for me to learn, but I do everything that the doctors said I’d never be able to do. I can walk and run even though I do fall sometimes, I eat very well now by myself, can dress myself and can even tie my own shoes, I’m reading, writing, counting and making sure that everyone else is doing what they are suppose to be doing. I sign most of the time to “talk” to someone but also use a VOCA and anything else that will get my point across, and I also “sing” with a song by signing just like everyone else does with their voice. I have an angel that watches over me to see that I do what I’m suppose to, and I know that Jesus loves me. I love going to school, church, grandmas, Wendy’s, Burger King, and McDonald’s! I tell my family that I want to work at Wendy’s or that I’m going to be Santa Claus just like Tim Allen. I’ve been trying to get fat for my Santa aspirations but my parents are trying to keep me from doing that by making me exercise more and they watch me like a hawk so I won’t get into “stuff” in the kitchen! I would love to meet Dave Thomas one of these days.
I don’t know what all the fuss is about. I hear mom talking about me and sometimes I like to get into things when she’s busy talking on the phone. I also like to get out my favorite videos and watch them when she’s busy. my favorite thing to do is listen or read with my tapes and books. I love music and have won out 3 Fisher Price tape players since I was 3 years old. I’m on my 4th tape player now! I’m just a busy kid that likes to do “my own thing”. If you are ever in our area I wish you’d stop by and visit. It’d be nice seeing Mom without that phone thing stuck to her ear and I like seeing my “brothers and sisters” that belong to our Rubinstein-Taybi family! God bless us all and keep my angel safe beside me.
Lorrie Baxter has the USA RTS Parents Group.
Rubinstein-Taybi Parent Group
Garry and Lorrie Baxter
P.O. Box 146
Smith Center, Kansas 66967
Direct Contact (785) 697-2984
Fax Machine: (785) 697-2985