Life with Fragile X Syndrome

Things I wish I had known when Monkey was diagnosed.

Melissa

Every once in a while I’ll skim through some of my older posts and find myself shaking my head over some of what I wrote. Perhaps it’s just wishful thinking but it seems to me that there was an awful lot of hysteria and near hysteria back in those early days that I just don’t feel any more. It started me thinking, what do I know now that I wish I had known as a newly diagnosed parent?

  1. There is no magic therapy/medication/supplement that will fix this and he will only be little once. Don’t lose those moments to fruitless searches.
  2. This is not my fault. Yes, they are my genes but I DID NOT KNOW and I deserve a little slack.
  3. There are going to be stupid people who say stupid things, who do stupid things, don’t let them ruin your day.
  4. There are going to be mean people who say mean things, who do mean things, don’t take it. Stand up for yourself, for your child.
  5. If it is working, you are doing it right. Forget the book, forget what your neighbor’s sister’s cousin thinks…you are doing it right.
  6. A day, a week, a month…it’s not a long time. It will be over in a heartbeat.
  7. You will be OK too, someday. ((I had to edit to add this because it is really true. You have to learn all of this in your own time but keep it in mind when you are feeling helpless or hopeless.))

I know there are a ton more. Are there things that you know now that you wish you had known then?

Hope, it isn’t always pretty.

Melissa

Last night, as I was getting Monkey ready for bed, he looked me right in the eye and his face lit up. It was one of those perfect moments when I just knew that he loves and trusts me implicitly. Naturally, I burst into tears and after putting him down for the night I spent hours crying. Why?

Today, after much agonizing, we are starting C’s Celexa washout period. And so it begins…3 weeks of gradually reduced anxiety medication, 4 weeks of no anxiety medication and then we see if we qualify for the STX209 trial. There is no guarantee that he will qualify. If he doesn’t, that is 7 weeks of heightened anxiety for no benefit to anyone. If he does qualify, it will mean 4 1/2 months of … well … we don’t know. Maybe placebo, maybe partial doses of the study drug, maybe a full dose.

Why are we doing this? Hope. Hope that this will help him more than the Celexa has. Hope that this will help a whole lot of other kids someday. Sometimes hope is a beautiful thing and sometimes hope is swollen eyes and an aching heart. Sometimes hope is a desperate decision to just do it, even when you aren’t sure you want to.

Right now the only thing I am sure of is that I am so fucking tired of having to make decisions like this.

If you want to read more details about what is involved in the STX209 trial, read this post from last September:

STX209 – You’ve heard of it, right?

 

We need a little Monkey funny, it’s been too long.

Melissa

A few days ago, Eric and Monkey were driving me to work. As he often does, Monkey asked for “Donuts? Coolatta fipped cweam?” And, as he often does, Daddy cruised around the rotary and reversed direction to get to Dunkin’ Donuts. No, I did not complain.

A while back we introduced Monkey to breakfast sandwiches, specifically ham, egg and cheese on a croissant. Monkey was a fan. So, when we pulled in he piped up from the back, “Lunch?” Naturally…you eat sandwiches for lunch not breakfast normally, right? Eric went in and returned with 3 ham, egg and cheese croissants. Except they were on English Muffins. Crap. We didn’t have time to go back at that point so we ate the sandwiches. We all ate all of our sandwiches except for the egg in Monkey’s, which he graciously returned to me. Ew.

The next morning was the same. “Donuts?” This time I suggested we get Monkey just the ham and the cheese on a croissant because I’m smart like that. We all ate all of our sandwiches except for the cheese in Monkey’s, which he graciously returned to me. WTH?

As we approached my office building, Monkey piped up from the back again. “Brrread? More? Brrread, Honey?” Eric and I exchanged looks. There IS a Dunkin’ Donuts in my building. We first looked for a place to park so we could run inside for another croissant but had to give up. We were not paying $19 to park so Monkey could have another croissant. So Eric dropped us off and Monkey and I went inside, grabbed a croissant from Au Bon Pain instead because OMG, YUM!! And then I returned Monkey to the truck so they could go home.

SO this morning! We hear, “Donuts?” again. Feeling very smug I told Eric to go inside and get Monkey two croissants…let’s skip right to the part he likes. Eric returned with two bags, one contained our ham, egg and cheese croissants and one contained Monkey’s TWO plain croissants. I handed the bag to Monkey expecting excitement (yes, I should know better!) and instead got rejected. “Nope. Too big!”

What?? “Sorry, dude. That’s yours.” He finally peeked in the bag (yes, he rejected it without looking…you are not surprised by that are you?) and I got a, “Thank you, honey!”

A few minutes later I looked back and he grinned at me around a mouthful of croissant. I relaxed, unwrapped my sandwich and hear. “Haaaaammm? Haaaammm, honey?”

I pretended not to hear him. I also pretended not to hear Eric snickering at me. SMH.

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*

 

Annual IEP, check!

Melissa

This morning we had Monkey’s annual IEP meeting. We walked in expecting…nothing…since we already knew that he was staying at this school, that his teacher was changing but that the classroom aids would remain the same and who his classmates would be. All that was left were goals and we don’t sweat IEP goals. This is the one area that we’ve always trusted the professionals to handle responsibly. Sometimes we’ll comment if it sounds like it might not work because of an FXS related quirk but most times we just smile and wave.

The meeting was as anti-climatic as expected. Monkey has met a lot of goals this year and made progress on the rest. Everything was stepped up a notch but his main deficits remain the same so the target areas remain the same as well.  After we had worked our way through all the steps of the IEP we reached those last few pages…the ones with supplementary aids & services…that’s where it got a little fun.

Though we had amended Monkey’s IEP since we had signed the horrid thing to get away from last year’s team, there were still some remnants in there. Monkey’s teacher was asking to remove some things, like the note that said though his parents wanted him to be included in Science it wasn’t happening. We deleted the ridiculous note recording our protest of the math substitution as well.

Then his teacher slid a page across the table toward us and asked us if the “Vision Statement” was accurate.

The team envisions that with the additional support of a self-contained classroom, beginning in September 2011, Monkey will make progress with the skills required to be increasingly included in the general education classroom.

I looked at it and laughed and told her, “This is not our vision statement. Ours was rejected, this was written by the team leader and it’s ridiculous.” They could not believe that our vision statement had been rejected, she said, “If you say you want him to grow up to be a missionary in China, I will put it in there!”  I then told her that our Parent Concerns was also rejected and rewritten but we’d won that battle. Honestly.

Just as we were winding down she looked at us and said, “When Monkey first started here I looked at him and I looked at his IEP and I looked at him…it wasn’t the same kid.” All we could do was nod, we knew that the IEP as written last summer was not appropriate but we were unable to get the team leader to back down.

I’m beyond the ((ZOMG MY HEAD WILL EXPLODE))anger part of it now. Now all I really wish is that I could see the team leader again, or at least his teacher, and talk about it because they didn’t do themselves any favors by digging in their heels so drastically, they didn’t do Monkey any favors by distorting his abilities and challenges and they didn’t do his new team any favors by preparing them for a child who never existed.

I’m so grateful that his current team members were able to see him for who he is in spite of it all. It just reinforces our main contention all along which is, if you give him the chance, he will prove himself. Every time.

Onward to 2nd grade we go!

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!

Today you are eight.

Melissa

Dear Monkey,

I’ve been sitting here and staring at this blank screen watching the cursor blink for a long time, much longer than I expected. So many times I sit to write about you and the words flow like magic from my fingers, not because I have any particular magic but because you do. I’m having trouble today finding the right words to convey what’s in my head and my heart.

When people describe you, “soft” is one of the most commonly used words…soft curls, soft brown eyes, soft skin, soft heart. Everything about you brings out the protective instincts in those around you and sometimes I know we baby you too much because of it but you’re so patient with us.

There is also a quiet strength that I think a lot of people miss. When someone hurts you, intentionally or not, I’ve seen you take a breath and look to either Honey or I as you try to figure out how to feel about it. There have been times when I’ve thought, “Smack him…don’t take that!” but you always forgive them. You shake it off and give them another chance to do better, to be better. I wish I knew how you did that.

You have a way of making the most average of days fun. When I’m with you it’s hard to take my eyes off you. I find myself watching you…waiting for that mischievous twinkle in your eye that signals things are about to get hilarious. Even when I’m completely wrapped up in you though, watching you, you can still do or say something so unexpected that I’m taken by surprise by my own laughter. The pure joy that I see on your face when you make me laugh makes me feel like I’m the center of the universe.

You also can see right through people…right to the core of who they are. If you like someone I know, without a doubt, they are a good person. There have been times I’ve watched you interact with someone and I think, “Really? This one?” but it’s only because I let myself get hung up sometimes on how a person looks or talks or dresses. It only takes you a few minutes to bring out whatever it was you saw in them, a sense of humor or patience or kindness, and let everyone else see it too. Last week you took a picture of Daddy and I that left me speechless. This photo did for me what I’ve watched you do to others over and over and over…it shows the essence of us…our love of you. If this is what you see when you look at us then I know we’re doing alright by you.

Love you always,

Money