Post by lpluther on Mar 7, 2005 15:50:33 GMT -5
Hi, I'm new to this board. Sorry if this is so long. A year ago we found out that our daughter Sarah had the 2q deletion(37.1). My husband has not been supportive, he thinks he is, but he won't talk to me about it. We both had the test done, and it was not passed on from us. She has tested negative to all the medical problems associated with the deletion, however, she does have epilepsy passed on from my mother.
I had a normal pregnancy, my delivery started normal, but my uterus ruptured, so she had to come out by C-section. She was over 9 lbs. at birth. She had eating difficulties and they ran all sorts of tests. I was unable to breast feed her, but she seemed to take the bottle okay. She was very long and seemed very skinny, so different from my first who was a very plump butterball.
She was very sickly as a baby and toddler, had to have tubes in ears at 15 months. Once she turned 2 yrs, most of the illnesses went away, then at 3 yrs, began the diarrehea. They put that poor girl through test after test, then it just went away on its own after about a year. Now I know from other case studies, this is typical and was probably another sign. We kept trying to start her on potty training, but it was tough, and finally succeeded by age 4. Wanted to get her potty trained before K-garten.
When I look back, all the delayed development signs were there, but the pediatrician just blew me off. I'm not sure if it would have helped or hurt to know earlier. We expected her to be just like everyone else, and really pushed her. Maybe I wouldn't have pushed her so hard if I would have known earlier.
I had always questioned why Sarah did everything so differently and slower than my first. My oldest daughter was doing everything faster than normal, and could read by age 4. I was always told that children develop differently etc, but I knew something wasn't right. I tought autism perhaps. She was always falling and only had a few words by age 2. I was very concerned. By age 3, I enrolled her in speech. The first year there was hardly a difference, but by the 2nd year of speech, she just went crazy with talking. Now she never shuts up!! She is a wonderful silly girl and makes everyone laugh or smile daily.
I really think it was a tremendous help getting her to speech at such an early age. She was progressing slowly, and I was very worried that she wouldn't make it through K-garten. Her first quarter, there were no concerns, but by the 2nd quarter, they wanted us to put her in special education. I was very angry. They had told me her IQ was 54, this didn't seem possible. I went to her doctor and after months and test after test, they gave us the news. It was hard to wrap my brain around, and like I said, no support from my husband. The kids at school began the name calling and there was the neighborhood bullying. They had noticed her strange repetitive behaviors, and kids just pick up on those things.
She started special education. I volunteer once a week. Sarah rides the regular bus, and the girls on the bus are protective of her, but we have to watch out for the boys. I've had to complain a few times to the bus driver and school about the bullying.
She has been in 1st grade for over 6 months now, and there has been great improvement. She has begun to read and writes very well. Her biggest struggle is comprehension, and they are putting her in a regular classroom for a certain amount of hours per day. She was recently retested and they gave her an IQ of 70. I expected it to be a bit lower, but I will take 70.
In one year, she has learned to ride a bike, tie her shoes and she will return to swimming lessons in a few months. I had put her in gymnastics at age 3 and it helped tremendously with coordination. Then we put her in karate, but she just wasn't into it.
Sarah is the sweetest girl, always smiling and happy. She seems very normal, but when she opens her mouth and starts talking, people have a shocked look on their face. It was easy to pass off when she was younger, but now it's very noticeable. She has fewer and fewer kids her age that want to play with her. That's really hard.
My biggest concern is that she is so trusting. She would go with anyone. I have to constantly keep reminding her of strangers. I wonder if she will ever drive a car or have a job. I worry about all the bullies and people that will want to take advantage of her.
When I read one case story about a girl (now 24) who was able to graduate High School for the mentally retarded and works in a restaurant, I felt so much better. It's sometimes so hard to wrap my brain around this. I guess the hardest is wondering what her future will be like. It looks brighter all the time, but some days are especially hard. I do count my blessings, and I don't push her as hard as I used to. I just want her to enjoy being a regular kid right now!!!
Thanks for listening,
Lisa
I had a normal pregnancy, my delivery started normal, but my uterus ruptured, so she had to come out by C-section. She was over 9 lbs. at birth. She had eating difficulties and they ran all sorts of tests. I was unable to breast feed her, but she seemed to take the bottle okay. She was very long and seemed very skinny, so different from my first who was a very plump butterball.
She was very sickly as a baby and toddler, had to have tubes in ears at 15 months. Once she turned 2 yrs, most of the illnesses went away, then at 3 yrs, began the diarrehea. They put that poor girl through test after test, then it just went away on its own after about a year. Now I know from other case studies, this is typical and was probably another sign. We kept trying to start her on potty training, but it was tough, and finally succeeded by age 4. Wanted to get her potty trained before K-garten.
When I look back, all the delayed development signs were there, but the pediatrician just blew me off. I'm not sure if it would have helped or hurt to know earlier. We expected her to be just like everyone else, and really pushed her. Maybe I wouldn't have pushed her so hard if I would have known earlier.
I had always questioned why Sarah did everything so differently and slower than my first. My oldest daughter was doing everything faster than normal, and could read by age 4. I was always told that children develop differently etc, but I knew something wasn't right. I tought autism perhaps. She was always falling and only had a few words by age 2. I was very concerned. By age 3, I enrolled her in speech. The first year there was hardly a difference, but by the 2nd year of speech, she just went crazy with talking. Now she never shuts up!! She is a wonderful silly girl and makes everyone laugh or smile daily.
I really think it was a tremendous help getting her to speech at such an early age. She was progressing slowly, and I was very worried that she wouldn't make it through K-garten. Her first quarter, there were no concerns, but by the 2nd quarter, they wanted us to put her in special education. I was very angry. They had told me her IQ was 54, this didn't seem possible. I went to her doctor and after months and test after test, they gave us the news. It was hard to wrap my brain around, and like I said, no support from my husband. The kids at school began the name calling and there was the neighborhood bullying. They had noticed her strange repetitive behaviors, and kids just pick up on those things.
She started special education. I volunteer once a week. Sarah rides the regular bus, and the girls on the bus are protective of her, but we have to watch out for the boys. I've had to complain a few times to the bus driver and school about the bullying.
She has been in 1st grade for over 6 months now, and there has been great improvement. She has begun to read and writes very well. Her biggest struggle is comprehension, and they are putting her in a regular classroom for a certain amount of hours per day. She was recently retested and they gave her an IQ of 70. I expected it to be a bit lower, but I will take 70.
In one year, she has learned to ride a bike, tie her shoes and she will return to swimming lessons in a few months. I had put her in gymnastics at age 3 and it helped tremendously with coordination. Then we put her in karate, but she just wasn't into it.
Sarah is the sweetest girl, always smiling and happy. She seems very normal, but when she opens her mouth and starts talking, people have a shocked look on their face. It was easy to pass off when she was younger, but now it's very noticeable. She has fewer and fewer kids her age that want to play with her. That's really hard.
My biggest concern is that she is so trusting. She would go with anyone. I have to constantly keep reminding her of strangers. I wonder if she will ever drive a car or have a job. I worry about all the bullies and people that will want to take advantage of her.
When I read one case story about a girl (now 24) who was able to graduate High School for the mentally retarded and works in a restaurant, I felt so much better. It's sometimes so hard to wrap my brain around this. I guess the hardest is wondering what her future will be like. It looks brighter all the time, but some days are especially hard. I do count my blessings, and I don't push her as hard as I used to. I just want her to enjoy being a regular kid right now!!!
Thanks for listening,
Lisa