- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
One of the many things I wasn’t ready for as a parent — and then again as a special needs parent — is how true the clichés are. I’ve lost track of how many people tell me about studies that say growing up with a special needs sibling will make my other children kinder, more sensitive, and all around more wonderful people. I think it’s probably true but that doesn’t help get us through the day. Although there are moments.
Flashback: One minute, we had sweet little 18-month-old Oscar and we wanted a second child. Then, in a blink of an eye, I was pregnant with twins. And, no, I wasn’t taking fertility treatments and, no, we didn’t have any twins in our extended family. Yes, I’m sure. When the ultrasound technician told me at 20 weeks that there were “two in there,” my very smart husband said, “Two what?”
Oscar and his younger sister, Bea, are their own people. They fight like brothers and sisters do. Maybe more. And I can easily see the very typical relationship they would have had if our family ended there, as a family of four.
But we are a family of five. And a family of Fragile X.Saul was diagnosed with fragile X syndrome when he was one and a half (on the first night of Hanukkah, happy damn holidays). At the appointment, we were told he had a syndrome none of us had ever heard of.
In the next breath, we were told that I passed the gene to Saul and that our other children had to be tested. Oscar’s test came back negative and Bea was a carrier. As Saul’s twin, that might make sense in some cosmic way, though medically she’s no more likely than Oscar. (Fraternal twins are no more related genetically than any other sibling.)
It is unclear what being a carrier will mean other than she will need genetic counseling when she starts a family. Bea has many challenges: academics are a struggle right now and parenting her is not, shall we say, easy. But I have no doubt that she is the very best sister for Saul.
From the very beginning, if Saul was upset and lashed out at her—and his target often is Bea, the person he is closest to—she would turn to me and say: “Don’t worry, mommy, I still love Saul and I know he doesn’t mean it.”
When her preschool class was talking about superheroes and how real people have real powers, her answer was that she has the power to help her brother, Saul.
When another student at Hebrew School told Bea that her brother was weird, she calmly explained that he has Fragile X and it meant it was hard for him to learn certain things. Then she came home and told me about it and shared that she felt sad.
When the activity at a special needs retreat was to fill in “having a sibling with specials needs is _____ because ______”, Bea wrote “good” because “you can help them learn and explore the world.”
And just the other day, when spring finally came to New England and all the kids were on the playground, Bea naturally stayed near Saul to help him. I felt torn – sad that she wasn’t with her friends, sad that Saul needs help and doesn’t have friends of his own, and very grateful for her. Oh, and guilty, always guilty.
I would never thank the Fates for giving Saul Fragile X because it makes his life harder. I do, sometimes, feel thankful that I can see my daughter for the best she truly is.