blessedmomma23 (blessedmomma23) wrote in fragile_x,

Everyone was shocked... except me

Is it wrong that I felt slightly relieved to get my 10 year old son's FXS diagnosis last week?
Since he was about 18 months old, I've known that my son was "different." But, aside from fine motor skills and minor speech delays, he was always right on target developmentally. His sensory processing issues were mainly "hypo" not "hyper" so he came across as one of the most laid back kids you could ever meet. He didn't even cry when he was sick or got shots. However, with my strong background in early childhood development, I knew that wasn't normal. Eventually I quit bringing up my concerns because I was always answered with, "He's fine."
It made me want to scream, "I know he's fine!!!" But, I also knew on some levels he struggled and those struggles would just get harder over time.
This boy of mine functions on a highly "normal" level and he has the biggest heart. Almost everyone who knows him adores him and he is well liked by his peers. Which is why I got crazy looks from teachers when I voiced concerns about him, socially. Sure, he gets along with everyone and is liked, but he doesn't seem to really make close friends. I've seen him many times playing alone on the playground. (But it doesn't bother him at all, so...)
So thankful for a highly intuitive pediatrician, though. After a rough 3rd grade year, academics-wise, we ended up with an ADHD diagnosis and when I finally laid all my concerns on the table for the Dr, he ordered genetic testing. I'd never studied Fragile X, but as I researched it online, I realized my son had a lot if the symptoms, just in a very mild form. So mild that our family and the school personnel were shocked that the test came back positive.
I wasn't. I knew. I got a tad upset when my husband called me at work to share the results, but he said, "We knew this. And this is a good thing because now we'll be better able to help him." And he is right. And, I have a healthy, fully functioning, smart, happy boy. I have no right to be upset!! My only grief is that I know he'll have tough decisions to make about starting his own family.
I feel lost in all the online data right now! Where do we go from here? Should our whole family have testing? My daughters? My sister is considering not having any more children if her 19 month old son has it or if she is a carrier. Will things get worse for him with time?
The 5 days until our next doctors appointments seems like a lifetime away!

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