When I’m struggling emotionally, as I’ve been lately, I often have a hard time being motivated to do anything. Cleaning, laundry, showering…ugh. It’s all just so much damn work and I’d rather just, you know, sit and stare at a wall. Yeah. Or the inside of my eyelids…even better. I’ve found a guaranteed fix though, even if it is only short-term. Go to a Fragile X seminar.
Yesterday we were in Connecticut for the Fragile X Society of Connecticut’s 3rd annual Fragile X seminar. It was AMAZING. Dr. Don Bailey was there to talk to us about some of the results of the recent National Fragile X Survey. This was the first large scale survey of families affected by Fragile X. Previously a “large” survey might have had 100 participants or less, this survey included responses from over a THOUSAND family members! Amazing!
Some of the information gathered was depressing, for example, despite all of the awareness efforts of the National Fragile X Foundation, FRAXA and all of us the age of diagnosis has not dropped. Boys are still not being diagnosed until 36 months, on average, even though moms and dads are noticing something isn’t quite right around 12 months and even though a delay is confirmed and early intervention services are started around 20 months. This is so depressing!
We can do better, I know we can! Dr. Bailey indicated that he intends to spend a good portion of the rest of his career working on reducing this gap but he can’t do it alone, my friends. This is a call to all of us as moms, dads, sisters, brothers, cousins, aunts, uncles, grammys and friends of people affected by Fragile X Syndrome. We all need to do more to increase awareness. If you don’t know where to start, start here:
If there is already a LINKS group in your area, reach out…see what the LINKS leaders need. It surprised me to learn that, although there are some large LINKS groups with many participating members, MOST groups are being run on a day to day basis by one or two people. There is one or two people doing all of the outreach to local business to gain sponsors for the fund-raising and educational seminars that we ALL benefit from. There is one or two people reaching out to local media outlets trying to get newspaper articles or coverage on the local news stations to raise awareness of Fragile X. There is one or two people out there working their ASSES off to make all of our lives better. They need and deserve our support. Reach out to them. Yeah, you’re busy, I know. There’s school and work and raising a child with special needs and sick parents and on and on. I get it, I do.
Just take a few minutes to think about how you received your diagnosis. Think about the months and years of worry before you ever found someone to say, “You’re right, something is going on here.” Think about the months and years of stress and anxiety after that when no one could tell you what was going on. Think about being pregnant with your second or third child when you found out what was going on. Think about the months and years of struggle after that of trying to find appropriate treatments and services for your child. Think about all the times you sat in a way too small chair with a team of “experts” who were going to decide how they were going to educate this most precious being in all the world and not ONE of them had ever heard of Fragile X Syndrome before, none of them had ever been educated on how to reach your child, none of them had the first clue that the BOX they were comfortable with and understood was just so completely wrong for your child. What lengths would you have gone to if you could avoided even a little bit of that worry and stress?
We can’t go back and change our experiences but we can change how it will be for those who come later. We can change the lives and experiences of so many other parents and kids. Isn’t that worth making a phone call? Isn’t that worth volunteering to run a registration table for a couple hours once a year? Isn’t it worth putting your name on a list so you can be that soothing voice on the line when a newly diagnosed parent needs to hear from someone who lives the life that it will really and truly be OK?
If that all isn’t enough of a motivator, try this…yesterday, after the conference was over and all of the rest of the attendees were in their cars driving home, Duhdee and I sat down to dinner with 15 of the most amazing, motivated, loving people to talk about our lives, hopes and dreams. We talked about the new Fragile X clinic opening in Rhode Island next month, we talked about ways to raise awareness, we talked about concrete ways to reach out to the people who are on the front lines of diagnosing and treating those with Fragile X. We ate a most delicious dinner and enjoyed the company of some serious rockstars. It was a little hard to wrap my mind around sitting down to dinner and discussion with Dr. Braden and Dr. Riley ((I’ll share more of what they presented, it was a TON of amazing info!)) but then you add in Paula ((She even brought an entourage, lol)) and you have a recipe for total awe. I even got a hug, ’cause that’s how she rolls 😉
