Fragile X Conference

A year or so ago, Eric and I spoke with the Fragile X program at Children’s Hospital about putting on a conference geared towards professionals. After a few starts and stops, it stopped. It turns out it takes time and effort and more than one single brain cell ((all I’ve got to spare most days.)) to put together a conference! Are you surprised? No? Are you surprised that I was surprised? That’s what I thought.

Then Eric started thinking again, which never bodes well for me. A phone call and a couple e-mails later and TADA! We’re putting on a conference. I’m still wondering how the heck it happened but I’m also super, duper, wildly excited about it!

The very first conference we attended, about 6 months after our diagnosis, featured Tracy Murnan Stackhouse and Sarah Sharfenaker (better known as “Mouse”) and now we are bringing them back to New England for a one day conference. They are amazing presenters and, if you come, you will walk away with your head positively buzzing with ideas.

Plus, you can meet some of the coolest fragile X families around. We are doing catered boxed lunches to keep lines to a minimum and mingling time to a maximum, we really, really want the attendees to get to know each other a bit and make some connections!

This is the conference brochure with details: 2012 Fragile X Conference Brochure.

Please see the conference website for additional details: 2012 Fragile X Conference Website.

I REALLY hope we get to see you there!

 

 

Yesterday I mentioned that sometimes I start to think that, when it comes to fragile x, “I’m all that, a bag of chips and a slice of pumpkin cheesecake.” Something happened at the conference on Saturday that left me feeling completely humbled though.

Andy Selinger ((Conference host extraordinaire!)) mentioned that there was a newly diagnosed family in attendance. We were tied up at the LINKS table chatting with the other LINKS leaders and anyone who stopped by ((We happened to get a chance to meet some Facebook friends for the first time which is always exciting!!)). We saw the couple in the distance but didn’t get much closer than that until the lunch break when Tammy Selinger ((Conference hostess extraordinaire!)) invited them to join us to talk.

The three of us sat with this husband and wife for over an hour, we were able to get Dr. Picker from Children’s Hospital to join us as well. Their son will be two this week and their story is similar to many of ours. They suspected something was wrong for months but they were turned away by doctors, they fought with doctors who didn’t know anything about fragile x for testing until finally they were able to get the referral. It’s all very familiar, isn’t it? Haven’t nearly all of us traveled this road?

What really left me awestruck about this family was this…their son was diagnosed on Thursday. Less than 48 hours later they were at a conference, learning and talking. I’m not sure I made a coherent sentence for weeks after the diagnosis I was so destroyed. I know for sure that the first 48 hours were spent crying uncontrollably. They weren’t in denial, which might be your first thought, and they were emotional but they had an inner strength that truly was amazing to see. I feel so lucky to have met them and truly inspired by they way they have faced this life changing diagnosis.

See, it’s not always the presenters who make the biggest impact when you go to a conference!

I’m the first to admit that I don’t know anything everything about fragile x but sometimes I start to slide a little bit towards complacency and think I know enough about this beast we live with and sometimes love ((And, for the record, the beast is not Monkey but FXS!)). Honestly, after 5 years and 8 months ((but who is counting?)) of living with the diagnosis, 4 years and 9 months of advocating for Monkey within the school system, 6 conferences, 759 blog posts, 5 two-day visits to the fragile x clinic at Children’s Hospital, dozens of separate doctor visits with potty training specialists, psychologists and developmental pediatricians, every book I can get my hands on and countless hours spent online researching…I’m familiar with it, you know? Sometimes I let that familiarity lull me into thinking I’m all that, a bag of chips and a slice of pumpkin cheesecake. Given my ridiculously high estimation of myself why, why, why waste a weekend of free babysitting for another damned conference? Why??

The short answer is, there is always something to learn. If it isn’t from the speakers’ presentations it will be from another parent, a conversation with a provider in the hall or an exhibitor. And if you are very lucky, you learn something new from all of those sources. Me? I’m very lucky.

I’ve talked about the one day conferences that the Fragile X Society of Connecticut puts on before. They do an outstanding job every year in finding topics that apply to wide segments of the FXS population. This is not an easy thing to do! Every single one of us is coming to a conference with our own unique needs and knowledge based on our oh-so-unique children and their varying life stages. We have unique expectations of the hotel, the conference facilities, the presenters, the hosts and even the food served at lunch. That’s an awful lot of expectations to meet and they do it so very well! Keep this in mind for next year, this is WORTH driving hours in crappy traffic. We do it every year and every year I question it when I’m in Hartford and the nutty Connecticut drivers are swerving back and forth between lanes at 180 miles/hour and I’m feeling queasy because, holy cr*p, have you driven through Hartford before??? It’s like a video game mixed with a roller coaster. Eep! And every year, the moment we leave the conference…and usually sooner…I’m talking to Eric about the fact that I can’t wait to see what they do next year. IT IS WORTH IT.

I present, our conference, in pictures.

This is what greeted us when we finally arrived.

Eric reserved two beds because…I’m not sure *but* I was very happy because I took that second comforter and used it. I ended up with 4 layers of down comforter before the night was out and that’s the best sleep I’ve ever had in a hotel *bliss*

As soon as the bags were dropped it was time for….

 

Of course. We were so hungry that we didn’t speak and/or breath again until this little beauty showed up *pumpkin cheesecake!!* It was just as beautiful when we were done with it 3.1 seconds later!

Then it was back to the room and some seriously needed zzz’s!

The next morning I had a bit of a pout fest, Eric was unsympathetic. I asked him if he’d never had any regrets before and he said, “Not about something like this…”

I didn’t think to smell them until AFTER I was done showering and then I wanted to cry because they smelled soooo good. So I stole them.

Then it was on to the conference. When we checked in I was excited to make the VIP list for the SECOND year in a row. Sure, everyone makes the registration list but I made Jody’s ((Andy and Tammy Selinger’s daughter)) list! And…rated one of these…

Fine, Eric did too…

But I got hearts on my envelope and he rated a flower, I’m pretty sure this means I win.

Then it was on to the SERIOUS stuff…

See what I meant when I said there’s always something to learn?? Those are some seriously awesome topics by seriously smart presenters. I missed one entire session and still my head was so full that it shut down by the end of the day. Really, ask Eric what happened when he tried to get me to pick a dinner option ((Hint, MELTDOWN!!!)).

And this one is for my Eastern Mass ladies…SQUEE!

This is what we did ALL DAMNED DAY! We had so much fun!

Enough talky, I need to go pick up my Monkey in Maine. I’ve missed him so.

 

I get a lot of people searching for this! If you haven’t found the information already, let me give you the deets ((Yes, I just said “deets” I am a huge hoser.)).

What: The 2012 International Fragile X Conference
When: July 25 – 29, 2012
Where: Intercontinental Miami in, where else? Miami ((!!))

If you’re curious about what you can expect you can read these semi-coherent posts I wrote about the 2010 International Fragile X Conference in Detroit.

I had no clue!
Apparently this isn’t going to just write itself.

And these much more useful posts by the lovely Kristie Meyer ((Who I got to meet!)) of Life With My X-Men:

What I learned at the Fragile X Conference, Part 1
What I learned at the Fragile X Conference, Part 2

So who’s coming to MIAMI??? You’ve got a year to prime your liver! I’ll scope out the very best bar seats online soon 😉

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 😉