It’s probably a little late for this, but just wanted to put in my two cents. I have two nephews with Fragile X. They are 24 and 25. They were diagnosed when they were toddlers. I know it was extremely hard on my sister at the time. I’m a carrier, and have recently been married and am struggling right now with trying to figure out how to, and whether I even should, have children. My sister, however, has suggested that I just go for it, and if I have Fragile X children, then oh well. So, the fact that she has such a relaxed attitude towards having mentally disabled children is an indication, to me, that even if your children do have it, it will be difficult, but eventually you’ll accept it, and it won’t be that big a deal.
The boys are both doing well. The younger one is severely more affected than the older one. He’s about on the mental, emotional and learning level of a four year old. The older one almost seems normal in some ways, though when you speak with him it’s clear that he is mentally disabled. They both lack muscle tone, and they’re HUGE, which is probably more because their parents are both big, tall people. So, it’s kind of funny sometimes, because you’ve got these GIANT boys just trundling around. People stare, and it ticks me off, but sometimes you just have to laugh it off.
The younger one can be really socially unacceptable at times, but your control over the situation is really limited. That’s probably one of the most difficult things. If his mind is set on something, or he’s behaving in a certain way, you have to pretty much either let it go, or very calmly try to redirect him. If you start getting flustered or angry, he’ll make an even bigger scene, which is particularly challenging since he’s so large.
Then sometimes it results in comedic gold, like the time he did a double barrel flick-off to the assembled audience at a Special Olympics awards ceremony. He thought he was getting the gold medal, but for some reason he got the bronze instead. He was just standing up there, flicking everyone off and cursing and spitting. At the time we were pretty embarrassed, but in hindsight it was really funny.
So I guess my advice to you is during this difficult time, you’re just going to have to put one foot in front of the other. Try not to dwell too much on the unfairness of it all and eventually you’ll come to accept it. It’s just going to become part of the fabric of your life. My sister still enjoys her life, and she loves her boys.