Fragile X Conference

Perspective

Perspective

Melissa
The always beautiful Chelsea.
The always beautiful Chelsea.

My dear, dear friend, Mrs. Rogers is a fan of perspective. Every International Conference that we attend, our third having just passed, provides me with boatloads of perspective. If there ever comes a day when I think that I know all there is to know about fragile X as a disorder, I won’t stop attending the conferences…if only for the perspective it provides.

I remember in the early panicked days after we received Caleb’s fragile X diagnosis  how desperately I searched for someone, anyone, who could tell me how to fix this…him…us. For many years, in fact, I read every article I could about the status of current research. I remember telling my husband in breathless tones, “They’ve reversed all of the symptoms in mice!” I remember the surges of hope that accompanied reading those articles, surges of hope that were all I had to keep me afloat in that sea of depression I had plunged into.

Somewhere along the line that hope turned to bitterness, though. “Who cares if they’re still curing mice?? What about my kid?” which then became despair, “He’s almost 8, it’s almost too late for him!”

When Caleb turned 8 without a cure and our lives didn’t implode, I took a deep breath and realized that we were going to be OK. It was a remarkable moment for me to realize that this is our life and I like it. I like the friends it has brought into my life, I like the strength it has put into my spine, I like the confidence it has given me in myself. This is my life, it’s his life…and we’re good.

The ever charming Glenn
The ever charming Glenn.

I’m not immune to the hope for “better.” I’m not content to just be where we are at. There are many ways our lives can improve and it’s my job as the “Money” to get us there but the feeling of desperation, the feeling that time is running out, is gone. It’s been replaced with the realization that we’ve only just begun…and we’re pretty freaking happy already.

As we were on our way home from Orange County, my husband asked me if I had attended enough sessions…if I felt that the trip had been worth the time & expense. I realized then that I hadn’t actually attended as many sessions as I had planned and I felt briefly let down…as if I had lost an important chance to learn the secret way to make our lives better. After further reflection however, I realized that what I needed was perspective and that was exactly what I got.

I sat in an audience watching several adults with fragile X talk about their lives, their happy lives…granted there are struggles but who among us doesn’t have those? I spent the hours I was not in sessions meeting and talking with my new friends Cem, Spencer, Tommy, Eric & some old friends Nick, Dillon, Chelsea, Kelley, Glenn, Alli, Josh…just to name a few…and it was those hours that I value above all else. Sure, I could have learned another method of managing Caleb’s anxiety, but instead I talked with the people who had learned to manage their OWN anxiety…living proof that what I want for Caleb is possible. Perspective.

My new hero, Tommy.
My new hero, Tommy.

Of the sessions I did attend, many things grabbed my attention and set my brain to working but none of them grabbed me the way one single quote did…it has wrapped itself around me like a warm blanket. One of the self advocates, Tommy, said…”never stop believing.” That was his advice to other self advocates and to the many parents desperate for his words of wisdom.

Never stop believing. I won’t. Thank you Tommy…and all the other self advocates who gave me fist bumps, high fives and even verbally smacked me down when I pushed too hard (oh, lord can those boys make you humble!)….thank you for showing me what is possible. It was worth every penny, every minute, every moment away from my own son…it was worth more than I can express.

The bags are packed!

Melissa

This weekend Caleb and the dogs are going to Maine to spend time with my mom, dad and sister. It does not matter how stressed I may be or how exhausted I may be or even how excited I may be about getting a break…I still hate it. I said good-bye to my little Monkey this morning at school drop off and I won’t see him until Sunday afternoon when we pick him up. Already I miss him like crazy and I’m still 2 1/2 hours from the normal pick up time. I am just such a sucker for my little man, I can’t get enough even when I’ve had it right up to here. Strange how that works.

Later, Eric will pick me up and we’ll truck on down to Connecticut, with our friend Christy, for tomorrow’s fragile X conference. We’ll have one night to luxuriate in the cush king-sized bed with all the ridiculously comfy down pillows and comforter. *ahhh* AND we get to sleep in! Right? That’s the whole point of driving down the night before. Woohoo!!

Except…we’ll also be at the LINKS table and we need to set up the merchandise so it looks like we won’t even make it to six-firty tomorrow morning. *sigh*

If you’re coming to the conference, please take pity on me and stop to say hi! Also, bring your credit cards because we’re going to have all the awesome shirts, magnets, stickers, water bottles, travel mugs and hats that we sold in Miami with us!! I will feel WAY better about a five-firty wake up if I could sell a ton of stuff to fund the NFXF LINKS Program! We will ALSO be bringing some shirts we didn’t have in Miami…we’ll have some new gorgeous pink ladies cut shirts…even PINKER than the Miami version. They’re awesome…and we won’t have a lot.

See you there!

If not there, we are still going to be setting up the online store…we’re just working out a few little bugs!

2012 Connecticut Fragile X Conference – October 20, 2012

Melissa

In case anyone hasn’t seen this, the awesome and amazing Tammy and Andy Selinger have announced their annual conference topic and date!

The topic is Understanding and Treating Behavioral Issues Throughout the Lifespan and will be presented by the equally awesome and amazing Marcia Braden, Ph.D. The conference is scheduled for Saturday, October 20, 2012.

You can find out more details on the NFXF webpage:  www.fragilex.org/2012/links-support-network/connecticut/ct-fragile-x-educational-conference/

Also, Eric and I will be there with NFXF merchandise to sell onsite!

Hopefully we will see you there!

PS – We think C’s teacher will be coming…first time EVER someone from our district has attended a fragile X conference!! Fingers crossed!

 

Everyone will think they know what this is about.

Melissa

You will all be right.

At the conference, during a carrier workshop, I listened to Dr. Randi Hagerman talk about the many symptoms that carriers have in common. It was an eye opening session. It was a relief to know that these things that I’ve thought were just in my head are real and, more importantly, there is a reason for them. A reason that is not…me being a hypochondriac or me just simply being weak. It was also, to be honest, a bit terrifying to think of the possibilities that lay before me.

There are so many physical and mental symptoms that seem to come hand in hand with a status as a fragile X carrier, it’s overwhelming. It’s also frightening to think that these things, that may come to steal away the comfort of my body and mind, are not within my control…they are within my DNA. I don’t like not being in control ((I think this too might be a carrier trait!)).

After the initial helpless feeling, I decided I needed to focus on what I can control. Specifically, there is one thing I know I can improve and I know that improving this will help even should the worst come about in the future. I can reduce my stress. Stress=cortisol in your brain and cortisol in your brain is toxic. It destroys brain cells, it destroys the building blocks that make me…me.

No, I cannot eliminate stress…life is stressful for everyone…life is extra stressful for those of us with children with special needs…but I can do better. I began thinking about the major stressors in my life…my job, uncertainty and fear over Caleb’s future (both short and long term) were the first obvious two that came to mind. I can do something about some of that and I’ve already taken a major step in one of those areas. I could feel some of the tension leaving my body when I realized I was doing what I could, I was succeeding already.

Then, as always happens with me, I got greedy. I started thinking about other stressors in my life. The ones that don’t occupy a lot of my time or thoughts but flair up suddenly, unexpectedly. The medical tests I should have done but am putting off, for example, will cross my mind and I can feel the adrenaline (another stress related hormone) course through my body and for a few hours I’ll be thinking about all the ways I might die because I’m too scared to make the appointments I need to make (I’m not going to die, promise, but my imagination gets carried away at times!).

Another one of those sudden, unexpected stressors is anger.

Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured. — Mark Twain

Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned. — Buddha

We all get angry, some of us forgive easily and others forgive eventually. Depending on the transgression…I fit into both categories. There are times that a quick apology erases any hurt. There are times when an apology and time are needed to accomplish the same.

There is a special category, however, for those who have hurt people I love. For those who have taken advantage of people who were emotionally or physically vulnerable. Also, especially, for people who repeatedly do both of those things. This is where I am struggling. I cannot forgive people who have hurt the people I love. I cannot forgive a hurt that was not done to me directly, it’s simply not my hurt to forgive and my anger is deeper…it’s rooted in my heart.

I have been reading quotes and doing an awful lot of thinking over the last week about this and I simply cannot come to any conclusion. I am harboring anger that I don’t want. I understand that I am doing emotional and physical damage to myself…but I cannot forgive them. Is it possible to lose the anger without forgiving? Not so far for me.

So, I’ll keep thinking. I’ll keep working at it. I’ll keep looking for the answer I hope to find.

And, in the meantime…

When angry, count to four; when very angry, swear. — Mark Twain

Fair warning.

I need another vacation!

Melissa

We are back home from the 13th International Fragile X Conference in Miami. I was so ridiculously anxious about the trip in advance because I only had one other International Conference experience to refer to which was my first in Detroit. This trip was so, so different.

In Detroit I was a new parent. I had not ever met most of the people at the conference. I’d heard of them, I had exchanged Facebook messages with some but many of them I had not one single clue about. I was, at that time, taking my first tentative steps out into the fragile X community. This time I came as a LINKS leader, I came with hundreds of fragile X parents as friends on Facebook. I knew their kids’ names, where they had vacationed, their pets, their interests and their pet peeves. We had a foundation to build on this time so it was not nearly as hard to reach out and talk to new people.

In Detroit, I attended every possible session, there was not a single moment of my day when I wasn’t supposed to be somewhere taking notes. This time, I went to 3 sessions (4 if you count the 1 I was a presenter for.) I KNOW! I’m at a conference with the world’s leading fragile X experts and what do I do? I hang out at a table in the lobby selling t-shirts and magnets. And I loved nearly every second of it.

I’d be lying if I said there weren’t times when I felt overwhelmed and wanted desperately to crawl into a hole. Then I’d walk away from the crowd for a bit, take a deep breath and just look around. The International Conference is just as much about the people as it is about the information and you need to give yourself time to enjoy the people or you are missing a huge piece of the conference…the human connection.

Let me share a few stories…in Detroit I attended the male panel, it was a group of young men who presented slides describing their schooling and their current lives. They talked about the things that worked for them and helped them learn and grow and they talked about the things that upset them and hold them back. They took questions and answered them. That was a revelation to me.

I approached one of the moms after the session and nearly begged her to tell me how to help my son become like hers…it was the first time I was able to imagine a happy, productive life for my son in a larger community and it’s a gift that literally changed my life. It changed my entire view of living with fragile X. I attended this session again in Miami and it never gets any less powerful. I will never miss this session at any conference.

In Miami, I had more time to enjoy the people. I walked around the exhibitor tables and talked to people. I met a couple of amazing men who live at the Stewart Home School in Kentucky. One of the most terrifying things about fragile X, for me, is what happens when I’m gone? I have spent a lot of nights worrying about this. I won’t lie, thinking about sending my son to live anywhere is torture…thinking about sending him hours and hours away? Not a possibility. Never going to happen. Then I met David and Chuck. I was absolutely in love with them. They told me about the school in such a way that made it very clear that they love it and are thriving there. I even found myself asking how far from an airport they were. Who knows what the future will bring but I can see this as an option at some point. A place for Caleb to ride horses or take yoga or study science and reading…a place to call home.

Also in Miami I had a chance to reconnect with friends. Sure, I could (and do) spend plenty of time skyping, texting or emailing them and even talking on the phone at times but there is something about sitting around a coffee table loaded down with pizza and drunk gummies while we catch up that just can’t be put into words. Having a chance to jump fences and wade knee deep into the ocean under the moon, to pole dance for the Foundation staff, to walk onto the field at the start of a major league baseball game with the most amazing and inspirational people I’ve ever met, to teach my ridiculous “Popcorn Dance” to Tracy (of Tracy & Mouse!!!)…none of this would be possible if I had skipped the conference.

So, while I certainly appreciate the fact that many people go with a plan to take notes until they drop and squeeze every idea and tip possible from the amazing faculty, I don’t want anyone to ever lose sight of the fact that though the “book learning” portion is important…you *can* do that at home. You can read books and scientific journals to your heart’s content…and still miss what makes this truly so amazing in my opinion…it’s the people.

 

I have a confession.

Melissa

I am super, super, super excited about Miami. That’s not much of a confession, is it? Bear with me…you should know by now that it takes me a while to get to the point…when I have a point, that is. I think I do have one this time but you’ll have to read to the end to find out ((TEASER!)).

Our experience at the Detroit conference in 2010 was so amazing and it brought us fully into the fold of the fragile X community. It was a huge turning point for Eric and I both. I wasn’t as graceful in my transition as Eric but I’ve come around to the point where a whole lot of “will never”s and “over my dead body”s have morphed into realities…the one that hasn’t yet…is now in the realm of “possibly, maybe, OK but give me a little bit longer?”

OK, now we get to the confession part…Detroit was pretty overwhelming for me emotionally and I’m getting really, really, really anxious about Miami. On the one hand, I’m way more prepared for the conference. I know what to expect and I have some amazing IRL friends who will be there this time. I have a place in the community now, I don’t feel like I’m on the edges waiting nervously for someone to say, “Oh, HI! I’m so happy you’re here!”

But.

Writing this blog makes me feel naked. Only a very few people in Detroit were able to connect my actual being to this…this…insanity. I outed myself last year because I decided it was time to own my story. It didn’t seem fair for me to preach connectedness and community and friendship when I was still hiding so much of myself. After so carefully keeping our faces and names and location hidden I said, “What’s the worst that could happen?” and blew the whole thing up. Probably after a couple glasses of Riesling.

So.

Now there’s a whole bunch of new people who I am absolutely, over-the-moon, excited to meet and this time they actually know who I am and that I want to meet them so I’m not a creeper in the corner trying to make eye contact in a non-stalkerish manner while I silently stalk them.  That should make it easier, right? But…it kinda makes it worse.

Now I’m consumed with a whole different set of anxieties…the main one is this…you guys are all so ((FUCKING)) cool. I am in awe of your stories, your resilience, your determination to make things happen…I feel unworthy. I feel like you’ll be disappointed when you meet me and see that I really am just a dorky stalker type.

One of my friends (KQ) keeps referring to the “cool kids club” which at first made me sigh and dream of the lost days of my high school popularity (HA! Fellow KHSers will get this joke, as soon as they figure out who the fuck I am) and wish I could be one of them. Then she gave me a “Duh!” look and told me she was talking about my friends…and me. Which made me laugh, then blush, then mumble awkwardly ((I do everything awkwardly, you will see.)) and finally…puke…because I am so not a “cool” kid. I’ve never been a cool kid.

I’ve always been the quiet one sitting smack in the middle of the room trying desperately to escape the attention of the cool kids in the back and the teacher at the front. I’m ((very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very)) shy when meeting new people. I think people maybe forget sometimes that just because I don’t throw up on your shoes ((I have not done this since my 21st birthday, I swear)), doesn’t mean I’m not anxious. I’ve been told more than once I’m intimidating, people are afraid to approach me because I’m so aloof but that is alllllll anxiety. I don’t bite, I won’t be mean to you, I’m sure that I want to meet you ((I typed meat and did not catch it until the 3rd review. Let us be clear, I will not meat you, that is another promise!)) even.

I remember in Detroit in 2010 I really, really, really wanted to meet Kristie (Life with My X Men, Kristie). The final night of the conference, at the banquet, I finally saw her. It nearly killed me to approach her and introduce myself and after getting a photo with her I ran ((awkwardly)) back to my table and sat there staring at my husband with huge eyes, shaking. It was that hard.

I know I promised you a point but I don’t really remember what my point was going to be anymore except maybe that I’m way more like you than you probably expect. We probably have very similar insecurities and very similar dialogs running in our heads ((That is meant to be comforting, BTW, not scary.)). I am going to try to be less awkward and be more…crap…I don’t even know what my options are though drunk is sounding pretty good right now *sigh*

 

It’s not too late!

Melissa

I posted this a while ago, Excitement and Disappointment, trying to raise additional money for the NFXF’s scholarship fund to send MORE families to the July conference. I received a stack of notices from the Foundation letting me know that some of you even donated money in my name which made me cry, you guys are the best.

I’m so excited to share an update! Based on some cancellations and the money that was donated, we are really, really, ridiculously close to offering a scholarship to everyone who asked. Given where we started, with the Foundation heartbroken over having to say no and the disappointment the families who were told no faced, that’s pretty awesome.

What is *most* awesome, in my opinion, is that this money is coming from our OWN. It’s coming from moms & dads who may not be able to go themselves but want to help someone else, it’s coming from people who’ve been before and know what a huge difference attending will make to those who haven’t had the chance to go before, it’s coming from friends with no other connection to FX but love of one of us…see?? Awesome.

I just want to say that it’s not too late, there is still time to send a little something to the scholarship and help change a family’s life.

Add a note in the acknowledgement area directing the money to the scholarship fund!

Oh my gosh!*

Melissa

So the other day I posted about the scholarship fund and I was just told that you all are actually donating money for this! That blows my mind and makes me so, so, so thankful for all of you who have stepped up to help make this a reality for families who could not otherwise go! Since I am asking for non-FX friends to donate too I thought perhaps I should share a little bit more about what going to my first International Conference has meant to me.

Let me start with this, going to the conference in 2010 was completely and solely my idea. Please don’t mistake this for bragging or minimizing Eric’s involvement in any way. He is going to be thrilled that I am accepting the sole responsibility for that decision because it also means that I’m responsible for the avalanche of changes that have taken place in our lives during the last two years. I will no longer be able to tell him that it’s all his fault when I find myself having to step outside my comfort zone, yet again. And, trust me, that’s pretty much all he has heard from me since we returned from the conference!

So, fine. It’s my fault. Happy E?

When Eric and I received the diagnosis in 2006, we tried very, very hard to pretend that our lives had not just been derailed. Of course, there were realities that we couldn’t ignore but we would look at each other frequently and say, nothing has changed. He was still our little Monkey, we were still who we had always been. Nothing had changed.

We went to one local fragile X event and while we were astounded at being in a room with other parents, once we left, we went back to defensively insisting that we were not those people. We didn’t have anything in common with those people, the ones who’s lives were centered on fragile X. No, we were just a normal family that just happened to have this thing blowing the roof off our lives. Nothing had changed.

For four years we stubbornly held this line. Fine, when it came to school fragile X ruled but, outside of that, we were just your average family with a child who couldn’t talk, who wasn’t potty trained, who didn’t sleep. Just your typical family. When people said that they didn’t know how we did it, we didn’t know how to respond. Honestly, we weren’t any different from any other parents, right? Right! They’re nuts, what is wrong with them? Nothing had changed!

I don’t know why I decided that the International Conference would be a good idea but I did and pestered poor Eric until he had us signed up. He was humoring me, there wasn’t going to be anything for us there. I was afraid he was right, not that I ever admitted it. This was going to be one expensive waste of time, energy and money. We knew everything we needed to know already. Nothing had changed.

What can I say, we were a little slow to the party. Every bit of our lives as we knew it, every bit of our future as we had planned it…everything. Everything had changed.

Going to the conference didn’t suddenly open our eyes to what had happened to us. In many ways, I’m still figuring it out. What it did was give us the knowledge and the support structure we needed to survive when we could no longer deny that everything had, suddenly and irrevocably, changed.

These past two years have not been easy, not by any stretch of the imagination. Anyone who’s been subjected to this blog for any period of time knows it was bad. Sometimes it was way worse than I could even allow myself to convey here. Dark, angry days. Cold, shut off days. Never-ending, bleak days. Give up and go back to bed days.

But, I didn’t give up. The dark, angry, cold, shut off days passed. I kept getting up in the morning and putting one foot in front of the other because I love my son and my husband and because I had this group of parents who had it as bad, maybe worse, than I did who kept getting up and kept moving forward.

Not only did they keep moving but they were determinedly dragging me and every other struggling parent along with them. These people, that I was half convinced were superheroes in disguise, put together conferences, raised money, raised awareness. These are people that I had put up on a pedestal and convinced myself I could never be one of them. I would have continued thinking that if not for that conference. If not for the shared drinks, the shared tears, the shared laughs. I met them and loved them and discovered they’re as messed up as I am and they keep going and they keep dragging others forward with them.

How on earth could I look at these people, my friends…some of the best friends I have ever had…and not stand up? How could I go on being deadweight and be OK with that? I couldn’t.

They brought me forward to the point where I can say, “Yes, everything has changed. My life is not what I expected.” And be OK with that. They’ve taken me under their wings, into their hearts, into their lives and shown me that they’re human…amazing, driven and determined…but still just human. They’ve shown me in ways both subtle and not so subtle that I could be like them. I could do things to help other people.

Within days of getting back from the conference we took the first, small step in that direction. Each day we get a little more comfortable and feel a little more capable…all because of that conference. Starting the LINKS group, going to Advocacy Day, testifying at the State House, hosting our own conference…every single bit of it…because of that conference.

I’m so grateful that we can afford to do this. I don’t “deserve” to go, I’m blessed to go and I know it. Every one of the families depending on scholarships to put this conference within reach deserves to be there, needs to be there. Please help them get there.

You can donate directly to the NFXF (it’s tax deductible!) by going here:

Any amount will help, a lot of small donations will do great things. Please put “Scholarship Fund” in the acknowledgement section to direct your gift.

*The title is one of C’s favorite sayings at the moment. It’s stinking cute.

 

Excitement and disappointment.

Melissa

In July, in Miami, there is this little shindig planned. I think you may have heard of it, it’s the International Fragile X Conference.

If you are new to the fragile X world, it is pretty much the place to be as a parent of a child with fragile X. It’s five intense days of presentations on just about any aspect of fragile X that you can imagine and it happens every two years. The top researchers are there discussing their work, fragile X experts are there sharing tips and best practices and parents are there sharing…pretty much everything. There is a lot of learning and a lot of fun to be experienced.

If you’ve been newly diagnosed, don’t worry if you’re not ready to go just yet. We skipped the first two after our diagnosis and I nearly had to beat poor Eric to death ((Lovingly, of course.)) to get him to go in 2010. It is mentally and emotionally exhausting and, yet, oddly rejuvenating. When the time is right for you, you will be amazed by what you can get out of the experience. You will most likely move heaven and earth to be sure to attend every one after that as well.

That said…it’s not cheap. The registration fees are expensive then you have flights and hotels and food…it adds up really, really fast. One of the many terrific things that the National Fragile X Foundation does is offer scholarships to cover the cost of the registration fees to help ease some of the expense. BUT, they can only give back what has been given to them and when they have more need than funds…they have to make really difficult decisions.

The scholarship fund this year received an unprecedented number of requests, the Foundation was forced to close the application period early because they far exceeded the funds available. When you have been in a position for many, many years to say “yes” to everyone who asked, it’s very disappointing to find yourself having to say “no” to so many families. When you, as a family member, need that help in order to attend to learn what you can to help your child, it’s heartbreaking, I’m sure, to be told “no.”

I feel like a dipship for not doing this earlier but I guess I didn’t really understand what this fund meant to people, what the hope of going to the conference gave to people until I saw the reactions. So, I’m on a crusade. The early registration period for the conference ends May 15th and then the costs start to escalate. Between now and then I’m going to ask you all, FX related or not, to donate to the scholarship fund and turn some of those “no”  responses into “yes'” responses. Eric and I, through the LINKS group, are funding two more.

Donate directly to the NFXF (it’s tax deductible!) by going here:

Any amount will help, a lot of small donations will do great things. Please put “Scholarship Fund” in the acknowledgement section to direct your gift.