Celeste found out she is a carrier for Fragile X syndrome after having her second child. So when she became pregnant for the third time, she and her husband decided she would have an amniocentesis to check for the disorder. While they waited for the results, Celeste got in touch with a couple of specialists in Denver. “They clearly laid out a lot of the symptoms and tried to prepare me as much as possible,” Celeste said. After ten long weeks, the results came back positive for Fragile X syndrome.
Challenges Presented When a Child has Fragile X Syndrome
Celeste’s son, Tyson, is now a healthy, 21-year-old man. “Life with Tyson is like having a toddler,” Celeste said. He can understand a lot of things but there are some concepts he hasn’t quite grasped. One of which is being toilet trained. “That’s just something we got used to but I think that we are getting closer to starting it,” said Celeste.
Another daily challenge of Fragile X syndrome is having to be constantly aware of Tyson’s needs. “Being able to maintain a life with a child that has a condition where he could get anxious or overwhelmed is hard,” Celeste said. She had to learn to adapt to his needs in those situations to make him feel more comfortable.
Family Spends a lot of Time Together Despite Diagnosis
“He is very caring and loving to us,” Celeste said. Tyson always wants to know where his siblings and parents are to make sure they are safe and okay. His genuineness brings his family joy because they know he cares about them.
Even though Celeste must always be mindful of Tyson’s needs, she makes an effort to go out and do things as a family. “We have tried to adapt to Tyson’s needs but also have him adapt to our lifestyle and what we like to do,” Celeste said. One of Tyson’s brothers played baseball and he learned to love going to the games. Tyson also learned to love camping and going out to eat with his family.
A Mother’s Advice with Fragile X Syndrome
If you found out your child is going to have Fragile X syndrome, “try to look at it as this wonderful thing instead of something that’s negative,” Celeste said. It is okay to mourn the fact that your child isn’t going to be “normal.” Once you get through the grieving process, you will be ready to embrace your life, do some research, and reach out to others for guidance.
There are challenges when you have a baby. If your baby has Fragile X syndrome, there will be different challenges and that’s not a bad thing. “It’s been a wonderful gift and challenge at the same time but I really wouldn’t change it for anything,” Celeste said.