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 😉
9 thoughts on “A guaranteed motivator.”
Just came back from dropping Dr. Braden and Dr. Riley at the airport at the end of an amazing weekend. The first thing that we wanted to do when we got home was to check your blog! It was a sure bet to find something. We were so excited to find the most well written and incredibly inspiring entry. You and Eric are a wonderful addition to the LINKS family and we look forward to many more successful events and we know that we will all be making a difference together. Stay tuned for info. about the 4th annual FX Society of CT conference!
Aw, thanks Tammy! You and Andy did a fantastic job with this seminar, we feel very fortunate to have the two of you to learn from! I can’t wait to see what you come up with for next year 🙂
Hi Melissa. Wow! What a post!! You are so inspiring! I love your blog – what an awesome website! It was so nice meeting you and Eric and hanging out. I’m looking forward to more involvement here in NJ and getting to know you guys more!!
I have a grandson that is 3 months old that has Fragile X and we are looking for a support group. We had never heard of this before he was born.
Clarice, you are not alone in never having heard of this. We had never heard of it until Monkey was tested. I sent you an e-mail, I can help you find a local contact.
Wonderful blog. Found you through the national fragile X foundation’s facebook page. I “liked” it after my son’s autism screening because he was sent for testing for Fragile X and it was hard to find much information. Hiw tests came back negative which isn’t surprising since only 7% of autism is linked to Fragile X but it was reassuring to find a bit of information while I waited. We waiting 14 years to get the Autism screening to begin with. Up ’til then we wondered why we didn’t fit in with the down syndrome community. Duh! Dual diagnosis explains it all. I can really relate to needing to know what IT is. Keep up the good work!
I read the first paragraph of your blog and sat back and thought, man there’s someone out there who feels like I do. I keep thinking there is something wrong with me. I’ve been on this a long time—almost 23 years—but here in NW Wisconsin there are no support groups, let alone other kids with FX. We have been to the Waisman Center in Madison and have a good relationship with Dr Len but we are still pretty isolated here. We also go to DC for Advocacy Day every year. I would like to find pArents with children in their 20s. Thx for the encouragement of knowing I’m not the only one who wants to just sit and stare at the wall!!
What else can you do at times? We are really fortunate to be in an urban area…more population has translated to more FX friends in the area. Thank goodness for the internet though or LOTS of people would be out there completely on their own. I think it’s especially important for the young adults to be able to connect with each other for that peer interaction…I wish I knew what the solution was besides everyone moving to one state so the boys and girls can all hang out! I hear NC is nice 🙂
I have enjoyed reading your blog. I have fraternal twin boys, turning two on Thursday, with FXS. At nine months they were still not sitting, which led to EI doing PT with them. Then, at fifteen months they were still not talking and my one son’s eye contact was poor. I requested they be evaluated by a developmental pediatrician who diagnosed them as being on the autism spectrum. Then, at their recommendation, this past July we had genetic testing done and found out they both have FXS. Now the days are filled with ST, PT, and ABA therapy. Not exactly how I envisioned being a stay at home mom. My husband and I would love to connect with other families in the Boston area that have kids with FXS. I had good days and bad days. This week, emotionally, has been a bad one for me. It is hard for me to see families with their “normal” kids. I took my boys to speech today and as I sat in the waiting room I saw a family with two perfect twins and the mother was pregnant, which was heart wrenching.