This was the information I had on the first page I put on the internet concerning Lisa. She was 6 at the time — so it was approximately 3 years ago. She's still the girl of my dreams!
The following information is about Lisa Wardlow, who has RTS.
Lisa was diagnosed with Rubinstein-Taybi syndrome in 1990 at the age of 3-1/2 months. When she was born she had a 9 apgar scale rating and was released as a "healthy" baby. I didn't find out about Lisa's syndrome in a "normal" (if there is such a thing) way. When I found out about the syndrome I was so relieved that I knew what she had and that she would live that I was actually happy. She had feeding problems, which included regurgitation and vomiting. She saw a nutritionist once a week for the first year of her life. At one year old she weighed 12 lbs. She also had frequent reoccurring respiratory infections. She was hospitalized at 3-1/2 months with the RSV virus and at about 9 months with dehydration. There were frequent rushes to doctor's office's and hospitals in the first few years with respiratory infections, pnuemonia, ear infections, etc.
"Elvis - Lisa"
When Lisa was first born, she resembled Elvis Presley. We use to joke that we were going to call the National Enquirer and say she was Elvis reincarnated. She was small, but had a ton of hair. I was approached numerous times by people saying they thought she was a"doll" until she moved. She looked as if she had a wig of black hair on. One of the things I was told is that most RTS children are very outgoing. Lisa was not left with anyone until she was 18 months old. The sitter for that day quit, never to return. Lisa cried the whole day. At that point I didn't think I'd ever have the "outgoing" child they were referring to. She was spoiled rotten, I rocked her every night before she went to sleep until I pulled out my shoulder when she was 18 months. At 11 months, teachers from Upwards Foundation in Phoenix, AZ would come to the house to work with her. They finally told me to place her in her bed and let her cry so she would learn to put herself to sleep. The first night I tried it, my other children accused me of child abuse so I finally gave in and rocked her... then I asked the teacher to write a small note to my children saying that what I was doing was necessary. With a lot of phone help from my friends, we finally got her on a schedule. Remembering that Lisa weighed only 12 pounds at a year of age, and being developmentally delayed, it was like a constant bonding with her. Most mothers can relate to holding their babies those first few months when they are so tiny and so needy and the bonding that occurs. Lisa was like that for at least three times the "normal" amount of time, and I think that does forge a very strong bond. I think it also attributed to how spoiled she is today, although I am trying to work on that.
"Moaner Lisa"
We were told that some RTS children never talk. Lisa learned some sign language when she was younger which was a lot of help because at the age of 12 - 24 months she started "moaning"all the time because she was trying to express herself but couldn't say words. Lisa at age 6 (present) talks all the time, she still has trouble singing songs and her vocabulary can still be a little "choppy".
"My Love - My Angel"
At age 6 she is my love, my angel, the girl of my dreams... except she's not always an angel. She's got wrapping people around her finger down to an art though. She's very friendly and outgoing. Although we have talked with her about stranger danger, it is not something she has comprehended. There are a lot of things that are absolutely wonderful about her, and like any other child, she also has faults. Lately she started saying two bad words on a continuous basis. While I was talking with someone the other day they said a bad word (computer was messing up). I told them if I wanted to hear language like that I'd talk with my daughter.
She prides herself on being polite, "like Michael on Barney" and she always gives everyone a warm welcome. She loves riding her bike and playing outside on the swing set. She wanted a wheelchair for Christmas (like her friends at school), she got a stroller for her baby instead. She loves her dolls, Maggie (which she got off theSimpsons) and Tasha (off Barney).
Update: Ignoring the bad words did not work, especially when you have other children around "snickering"...with Lisa what worked is telling her she couldn't go to the store with me until she stopped using bad words! The "social butterfly"outweighed the attention of using bad words.
Trying Not To "Write A Book"
A lot has happened since Lisa was born, good and bad. I don't look at doctor's in the same way that I use to, I realize they make mistakes. When Lisa was 4 to 5 months old I read an article that said something about people looking at handicapped children as "defective"and it was the first time I cried after being told about the syndrome. I cried though because I didn't realize that a human being could be considered "defective". Lisa has the same emotions as any human being. She laughs when she's happy and cries when she's sad. I want the same thing for her that I want for all my children, to be happy, to feel useful and to be loved.
Summary
In order to accept Lisa, you have to accept that the syndrome is a part of her. I remember people telling me to bring her to their church and they would pray that she would be "cured". I'd ask, "then who would she be?" She wouldn't be the same as the kid I know and love now. You want an illness cured, but Lisa is fairly healthy. She's mentally retarded. And it's not a sad or bad thing.
You do go through different stages when you have a mentally retarded child though. At one time Lisa was always saying she wanted to be a bus driver. I thought that was sad because she might not ever be able to drive... Then my son decided he wanted to be a pro basketball player. I don't think he has the height, so it put everything into perspective for me.
Lisa is very self-confident, very outgoing and she's being raised to accept RTS and being mentally retarded.
I've learned a lot, not only from Lisa but from other disabled people. I've met some of the coolest kids the world has to offer. I think a lot of people still consider the disabled people weak in our society, when in reality they are the strongest, especially in spirit where it really counts.