My son, Jessie, has Fragile X Syndrome and sometimes it makes me feel guilty because I am the carrier and the reason he has this syndrome. There is really no way I could have known this would happen but Jessie does not deserve this, he deserves to be just like all the other kids.
a. How does it feel to be the parent of your child?
Having Jessie is wonderful but sometimes I feel overwhelmed. There are so many doctors’ visits and medications it is hard to keep track. Jessie is not as severe as other children with the syndrome but it is still hard. Having Jessie is a lot of work but he is still a joy to have.
b. How is your child developmentally the same or different from other children at the various ages?
When Jessie was younger he had many gastrointestinal problems and would throw up all the time. It was hard for him to keep food down. We were worried about him not keeping food down but he was a baby babies throw up. It was not until he was a toddler that we knew something was wrong. As a toddler Jessie had developmental delays, such as when he started walking, and language delays. We have two kids older than Jessie so we had an idea of where he should be developmentally and he was quickly falling behind. He was also very shy, even with people he had known since birth. That was when we discovered he had Fragile X Syndrome and had to start his medications. When he got to preschool age he needed sensorimotor integration therapy, toilet training, and the seizures started. Now he is in third grade he has to go to speech, language, and occupational therapy and he has attention problems and hyperactivity. He is also behind the other students in his class academically because of his slight mental retardation. He is able to learn and function in a normal classroom but it is difficult at times.
c. What professionals/agencies do you deal with? What services are available to you and your child?
I deal with a lot of doctors and therapists. The doctors are for the seizures and other medications needed for him. They also need to watch out for other symptoms that may develop, such as tremors and aggressive behavior. The therapists are to help with his developmental delays, in hopes he can catch up to other kids his age. My son is also in IEP and needs an aide in the classroom at certain times.
d. How did you find out about the above services?
The therapists I learned about through my son’s doctor. Many of the services available to Jessie at school I have learned through the school and the district. Many of the services I use have been found through The Fragile X Foundation. The Foundation has been a great resource when I have questions or problems. They have even provided some great resources for my son’s teachers. Visit The Fragile X Foundation online at
http://www.fragilex.org/html/home.shtml for more information.
e. What financial burden, if any, are you experiencing?
Lucky for us once our insurance found out about Jessie’s syndrome they did not drop us, but it has still been tough. There are multiple doctor and therapist visits where we have to pay co-pay every time. Then there are all the medications we have to buy for him. The insurance covers most of the cost of the medications but not all. Even though it is only a little money every time he needs something it really starts to add up. We are not struggling too much but there are many times we have to forego family vacations or new things for the other kids. Sometimes it can be difficult but we are surviving.
f. What other information do you want to share?
Though it may be difficult to have a kid with Fragile X Syndrome there is a lot of help out there. The Fragile X Foundation provides amazing resources and help with anything I may need. There is so much support for Jessie and my family I never feel alone or lost. If I have any questions there is always someone to ask and someone to help. It is hard but the community is very supportive.
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