Author: Melissa

Habit forming.

Melissa

I have heard that it takes 3 weeks to form a new habit, I’ve always kept that in mind when I was trying to meet a goal…or not totally fail at sticking with a resolution ((I always totally fail at sticking with resolutions!)). I also recall reading somewhere that 3 weeks was basically made up based on some study of amputees and it’s really two months. Whatever. I think we can ALL agree…

Unless?

Unless you are a child with fragile X and that ONE occurrence is Money buying you freaking DORITOS from the vending machine in the parking garage at work. Of course.

I was met this evening with an unbuckled Monkey attempting to escape the truck saying “Ritos? Riiiitos? Doritos, Money? I want!” OMG. Thankfully this is not my first go ’round so I had a snack in my purse for him already ((Brought from home that morning, I am GOOD!!)).

Anyone want to guess how long it will take to break this habit? I’m guessing sometime around…never. 30 years from now we’ll drive by that building and hear “Ritos? Riiiitos? Doritos, Money? I want!”

It’s like winning the lottery!

Melissa

There was a time when Eric and I frequently found ourselves completely mystified by something Caleb was trying to say. We knew he was trying to say something, as opposed to making random sounds, because he would very deliberately repeat the sounds several times while watching us closely. If we couldn’t figure it out he would simply move on. It broke our hearts.

Over time though he would slowly perfect the sounds until, suddenly, the light bulbs would pop on and we would finally figure it out! Once we figured it out we could repeat the correct pronunciation and he would quickly clean up the sounds so anyone could understand him.

As his speech got clearer and clearer those incidents diminished. There has been one that has been plaguing us for ages though. It has been making us a little crazy. A few days ago we finally decoded the word…or rather, phrase.

At the beginning it sounded an awful lot like…”$hithead.” I know, I know…given our pottymouths that shouldn’t have been confusing us but…that’s one of a very few that we don’t use! Over a long period he kept working on this one until it sounded like…”Is she dead?” We really thought this was the answer but we were really confused about where it came from…it’s hardly a question we expected him to pick up randomly.

One day last week, C and I were watching The Penguins of Madagascar and he rewound a scene a couple times. I was distracted ((by Pinterest, natch)) and, quite frankly, he does this so much I often tune it out. So it took me a while to catch on that he was asking, “Is she dead? Is she dead?”

At that moment my focus zeroed in, often as soon as I start paying attention to the TV he will switch episodes…just to mess with me, I suspect. I needed to at least figure out the episode though so I could go back to it and FINALLY answer this question. But C took pity on me and rewound it one more time…

I burst out laughing and yelled to Eric, “I figured it out! I figured out, “Is she dead?” He was cooking dinner but stopped and immediately came to hear.

“We would never have figured this one out on our own”

I paused dramatically, it seemed appropriate after all this time wondering, “Is chivalry dead?”

That is an awful long way from $hithead, eh?

Dialing it down a notch.

Melissa

So, yesterday, I went a little “Mama Bear” on you all…I’m not apologizing and if you haven’t already read Do You Really Want A Cure…go do that, OK? It’s important stuff that clearly gets my heart rate up! THAT is the face our IEP team members see when they let Monkey down and don’t do right. I might have earned my reputation with certain folks in the district.

There’s something else I’ve been wanting to talk about that is also very important. Speaking to your child’s classmates. There is nothing like the zeal of a new convert, eh? A lot of people have been doing this over a long period of time and they do it very well. Of course I’ve read Holly’s blog on the NFXF, I’ve listened to the podcast, I’ve attended her presentation at a conference. The girl knows how to do this really well and you will too if you read that blog, listen to the podcast and check out the presentation that she has done. In addition to those materials I also found this post by MOM – Not Otherwise Specified…A hair-dryer kid in a toaster-brained world. That’s the first in a series of posts and it’s amazing.

So, with all that information in my head, I sat down and wrote one for Monkey.

I’m not going to go into detail because

  1. Those two ladies have got it covered, and
  2. Your presentation is going to look different from what everyone else does.

It HAS to, because your kid is different, your kids’ classmates are different…there are a ton of variables that will make your presentation unique but if you read/watch/listen to those materials you will see why it has to be different and how to make it work. It sounds daunting, hopefully you will be surprised at how quickly it comes together once you make the decision and do your homework. Even if it doesn’t come easily though, do it, work at it, it is worth the effort. I spent maybe 3 hours total and part of that was rehearsing it with my husband. See…there were two of us presenting…that right there changed the dynamic and it changed the presentation.

One thing I will say is you don’t have to do ALL the things or cover ALL the topics. Do what feels right for you. We did not use a visual, except for my endless imitations of Monkey’s quirks, of course. We also had 3 points that really, really mattered to us.

  1. That fragile X is genetic, it’s not something you catch, and it makes some things harder for Monkey but he can’t help it.
  2. That they were all very much alike, way more alike than they are different.
  3. How they can help.

That was it for us. We used Holly’s ideas to convey those things but we kept coming back to those 3 points.

What I really want to say is that this works. You’ve been hearing it, I’m sure, from lots of people but I feel compelled to add my voice to the crowd.

Monkey’s teachers loved the presentation and that afternoon his special education teacher told us that that very afternoon they saw kids using the “How they can help” ideas. Immediately there was a change. Instead of ignoring one of Monkey’s off topic interjections, they were responding to him, acknowledging what he said and then ADDING how they felt about the topic to it.

There is no amount of therapy in the world that is going to teach Monkey social skills the way that right there will…and the kids? They just needed someone to tell them how to take the next step, they’d been willing all along.

 

Do you really want a cure?

Melissa

This isn’t one of those philosophical posts about how sweet and wonderful Monkey is just the way he is…and he is sweet and wonderful! If you don’t know that by now…uh, welcome to BasicallyFX, you must be new!

Anyway, this isn’t that. This is me seriously asking you, each and every one of you, DO YOU REALLY WANT A CURE? If the answer is no, that’s A-OK, I still like you! Lots! But you don’t have to finish reading this one…try this one instead, “The future is?”  It still makes me cry to remember that moment!

For the rest of you, the ones who stay up night after night with red eyes and a broken heart…the ones who read that question, “DO YOU REALLY WANT A CURE?” and thought, “Is this lady on fucking crack ((The answer to that is NO! I am not! Though many will not believe it and I cannot really blame them!))? WHO DOESN’T??”…this post is for you. I’m going to tell you a secret. It shouldn’t be a secret but it seems to be…there will be no cure…EVER…if you don’t step up. Period. There is no researcher or drug company in this world who can find a cure for fragile X without YOU.

Cures don’t just show up out of thin air…cures come from years and years and years of hard work, of study, of experimenting. That sort of thing…is expensive as hell. Seriously, it takes millions and millions of dollars to keep a lab running to find a drug worth investigating in a drug study. Where do those millions and millions of dollars come from? As amazing and wonderful and out of this world as FRAXA and the National Fragile X Foundation are…it’s not coming from them…yes, some is…but in the grand scheme of things, it’s pennies. Those millions and millions of dollars come from…the NIH, the CDC and, surprisingly, the DoD…what do those things have in common? Right, they’re all government agencies. That big, evil force that is stealing all our monies…yeah, that one. All that money coming out of your check that makes you gnash your teeth? That is our funding stream for the cure we so desperately want.

I’m not going to get into politics, mainly because, I like you all too much. I can guarantee we don’t agree on everything, even some things that I feel really, really passionate about. Things that seem so obvious to me that it makes me question the intelligence of anyone who doesn’t see that I’m right. And I don’t want that to come between us because, as I JUST finished telling Monkey’s classmates, we are all WAY MORE ALIKE than we are different. OK? In the ways that matter, we’re alike…we’re human, we hurt, we love, we want the best for our kids…and politics just muddies those waters. SO, NO POLITICS. But the fact remains…our cure is going to come from our tax money.

Does tax money get wasted? Yes! The how and why fall into politics and we are not going there! So! YES, money gets wasted but the fact remains that the vast majority of the research we want and need…it comes from that pot. We don’t have to be helpless though, and I do know a lot of people do feel that way. What difference does one small voice make, right? But we do not have to be one small voice, we are a community of people who…on at least one issue…can speak with one big voice and that gets peoples’ attention.

Every March, the National Fragile X Foundation hosts Advocacy Day. It’s the first Tuesday and Wednesday in March. If you want a cure, you need to add your voice to those efforts. You need to write letters, you need to make phone calls but MORE importantly…you need to SHOW UP. Letters may get scanned and set aside. Think for a minute about your junk mail pile and then think about what your Representative or Senators’ pile looks like. You don’t want to just be one more letter in that pile. Calling is good! It’s hard to ignore a voice on the other end of a line…but you’re not going to get to your Representative or Senators that way either. You’ll most likely speak to a volunteer or intern, an eager, intelligent person to be sure, but you will just get added to the list of things they tell their boss. You don’t want to be just one of a dozen or more items on that list for the weekly meeting. If you SHOW UP in their office, you still will probably talk to a staff member. But that list of names of constituents who showed up that week to discuss an issue or make a request? That list is pretty short, that is the list you want to be on. And in a perfect world, you would do all three because there is no way you get ignored then!

So, Advocacy…it’s very important. I understand that the financial and logistical aspects can make going to Washington an impossibility but there are still phone calls to make and letters to write…and that’s way better than doing nothing! You really don’t have an excuse to not do those two things. This is how we get our Representative and Senators to sign on to fragile X research funding and this is how lab research turns to real world research. No, they don’t always listen, I know. One of our Senators has given us the same brush off letter two years running. He also happens to be up for reelection. I know I’m getting dangerously close to politics here but I think you can imagine how those two generic, brush off letters, containing “as you know” language that was written by a researcher that ALL the Senators and Representatives use ((Guess what guys, we talk, we share those letters, we KNOW when you have not paid attention!)), made us feel. It influences how we perceive him and it influences how we vote. SO, no he didn’t listen, I used my voice and failed BUT I have other options to let him know what I thought of that. You all have the same options.

OY! Now we are finally getting to where I thought I was starting, I really do have an amazing talent for tangents *sigh*

Trials.

When I say trials I’m sure most think immediately of drug trials. The fact is, though, that not all research trials involve drugs of any sort. There is one going on called “Validation of Saliva in the Esoterix Genetic Laboratories Fragile X Assay” basically they do a blood test to see what your fragile X status is and then they collect saliva to prove that their saliva test kit works. No drugs. The the majority, however, are drug trials. There is a lot that has to happen before they get to this stage where they can do human research and prove that it works as they think it will. But when they get to this point, the research cannot move even a little bit forward, to what everyone hopes will be a cure ultimately, if they don’t have volunteers to participate in the study.

No study participants=No data=No cure!

All the lab results or money in the world won’t get us past this.

A few years ago, we met with some people at Seaside Therapeutics because they’re right here in our backyard and they wanted to meet families. When we were talking about what they were working on and what their hopes were for getting this really promising drug out to the people who would benefit from it, OUR KIDS, they thought 2012 would be the year. They planned to have done the research and jumped through all the hoops and finally, finally, get it to the point where you could ask your doctor to prescribe it. Where you could stop by the local pharmacy and pick up a pill (or capsule, or liquid) that helped your kid be the best they can be. Does that not sound amazing??

I left that meeting with a soaring heart.

2012!!!!!!!

Well, guess what? It’s 2012 and we still don’t have a pill, capsule or liquid to help our kids. We are still up night after night with red eyes and broken hearts, watching desperately as time slips though our fingers. It makes me furious sometimes to think about all the wasted time. You know what we’re looking at now?

2015!!!!!!!

ANOTHER three fucking years. That isn’t OK with me and it shouldn’t be OK with you either and you know what? It makes me really, really, really angry with the people holding this up. Not the FDA, not Seaside…it’s US. You and me and every other parent of a child with fragile X out there who isn’t paying attention, who doesn’t know about the studies or who simply isn’t willing to participate.

See how I include myself in there? I’m as at fault as anyone out there. We still haven’t started that study…we have a visit soon…but we’ve dragged our feet and contributed directly to three more lost years. Go team.

No one else can do this part for us, folks. If we aren’t willing to step up and face some potential hardships…travel, doctors visits, possible side effects…it all ends here. So all that money I’ve been going to Washington and begging for? Wasted. USELESS. It’s embarrassing, really. But I’m not owning this all on my own. If you’ve gone and been turned away from a study, you get an A for effort…did you keep looking at other studies? Have you been turned down for them ALL? Do you even know what else is out there? No one can spoon feed this to you, you have to do the work, you have to be willing to sacrifice in the short term for the long term benefit.

Phew! I wish that had made me feel better, I really do, but guess what? These are just words on a page…angry, helpless, useless words on a page. It doesn’t help Monkey. It doesn’t help your kids either. I can cry and yell and swear ALL I WANT and I can’t fix this. I can’t make this happen for Monkey on my own. I’m depending on your, counting on you, to help me help him….help me help your child! I’ll beg if that is what it takes for you to click on this link and make some phone calls:

ClinicalTrials.gov

Then, just as importantly, keep checking that link. Sign up for the RSS so new postings show up in your email. Put a calendar reminder to check once a month. I don’t care how you do it but don’t just think you’ll do it because you won’t. You will forget ((It is a carrier thing!))! We’re all busy and have a lot on our minds…you need to do something to keep this at the front of your mind. OK? Please? Pretty please? I’ll never swear again ((Lie, sorry!)) or I’ll swear at old ladies ((Since some of you find this hysterical!))…whatever makes you click on that LINK and MAKE THE CALLS.

I know this isn’t easy. I have agonized over this decision to put Monkey in a trial. A small fraction has made it here but most of it has been eating at my brain, giving me headaches, keeping me up at night, giving me nightmares. I know as well as anyone does that this is a huge step. But guess what? If you aren’t willing to take it? Then I can’t get there either. All my agonizing and stress and eventual decision to participate. All my motivation. All my determination. All my hope. Will leave me right where I am now. Angry and frustrated and desperately watching more time slip away.

I can’t speak for everyone but my kid? He deserves WAY BETTER than he’s gotten so far. I love, love, love that people love, love, love him and his hair and his sense of humor and his sweet smile…but that doesn’t do a damn bit of good, people, if you won’t step up here. We are stealing the futures of our own children…of each others children…how can we be OK with that? How can we sleep at night, knowing that there was more we could do and we chose not to do anything? It turns out, I can’t.

How are you sleeping?

 

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!

 

Those freaking IEPs.

Melissa

I think one of the most stressful parts of having a child with fragile X is the whole IEP process. Obviously, we invest a lot of emotion in this process because these are our babies, our prides and joy and we want nothing but the best for them. Then we are thrown into this mysterious and bureaucratic process where we are being asked to trust total strangers to determine the educational fate of our children. We are turning over our kids to this *machine* for 18 years in many cases. It is asking way too much of a parent in my opinion but it is what it is.

There are ways to make this process less mysterious and I firmly believe that gaining a sense of understanding of the process, if not control over it exactly, can go a long way in making a family’s life better.

Since I’m a fan of lists, I’m going to list off the things I think you should do RIGHT NOW if you haven’t already. OK?

  1. Buy this book: Wrightslaw: From Emotions to Advocacy.
  2. Read it. Put AWAY the highlighter and resist the urge to fold down pages or take notes. Just read it. It may trigger lots of emotions. I found myself getting absolutely furious with the school district over all the NEW ways I was now aware of how they had screwed with us.
  3. If you find yourself getting absolutely furious, get over it.
  4. If you can’t get over it, consider hiring an education advocate. You need someone who is going to reign in the emotions from here on out.
  5. Read it again. I’m serious here, you need repetition to learn…everyone does! I know you’re thinking that you don’t have time to read this even once, never mind twice, but you need to make time for it. It’s important. This time highlight/fold pages/take notes to your heart’s content.
  6. Review point #3.
  7. Develop a vision for your child. I blogged about this for the National Fragile X Foundation. Create a vision statement for your child’s life…think long and short term. You can see our vision statement on the Foundation’s blog: A Vision.
  8. Develop a Positive Student Profile for your child that fits your vision statement. There are a number of samples on that same blog on the Foundation’s website, Caleb’s is here: PSP-1.
  9. Save this file: Learning Styles (this has a page for boys and one for girls.) At least two days before your next IEP, meeting forward it to the entire team and tell them you would like the “Accommodations” to take your child’s learning style into account. We have encouraged them to copy and paste the language right into the document!
  10. Arguably, this point isn’t directly IEP related but I am guessing that at least ONE of your child’s goals involves social skills. Am I right? Yes? Good. So I want you to go to the Foundations’ blog again and read this: Finding Hope in My Children, by Holly Roos.
  11. Look at the slides.
  12. Listen to the podcast.
  13. Ask your child’s teacher on day 1 (or tomorrow if you’ve already started school) if you can give this talk to his or her friends. No one else can do this for your child, no one else knows your child the way you do and, at least in my district, staff are not allowed to give any specifics because of privacy rules so they cannot answer many of the questions that students may have. You have to do this. Next Tuesday, I’ll be making the request of Monkey’s new teacher and I want to puke…so I know how terrifying it is. But really, if you want the best for your kid…and I know you do…you have to do this.

 

We are at 1/4 dose and…it’s not awful!

Melissa

When we decided to take Monkey off Celexa, hoping that he might qualify for the STX 209 trial, you might remember I was a little apprehensive. OK, maybe more than a “little.”

Hope, it isn’t always pretty.

I’ll be totally honest, I’m still waiting for the $hit to hit the fan but so far, so good ((And, yes, I did probably just curse us! Thank you for noticing and please send wine. Lots and LOTS of wine. Just in case.)).

We’ve tried to continue pushing Monkey a bit, while also keeping in mind that he’s dealing with a cwap load more anxiety than he has been for the last 18+ months, and he continues to impress us. We took him to the zoo this past weekend with his Grammy & Grampy Welin and he did awesome.

The Franklin Park Zoo is pretty large and open and it’s familiar so it was a good choice but it was exceptionally crowded for a few reasons:

  1. It was a beautiful sunny day.
  2. It was a beautiful sunny SATURDAY.
  3. The 39th Caribbean Festival was taking place (literally THOUSANDS of attendees, loud music (the bass could be heard very clearly at all times) and very slow traffic/weird traffic patterns.)

There were moments when he was less than thrilled but it was a typical toddler who won the award for going into “Bat$hit Crazy Meltdown” mode ((She was tiny and she had both parents struggling and racing for an exit. They could not even physically get her into her stroller. I felt really bad for them and really, REALLY glad it was not my kid!)).

He walked through a “jungle” looking at animatronic dinosaurs (moving and randomly making loud roars) very, very happily…he was enthralled, even. He visited just about every exhibit in the zoo. He played on the ridiculously huge and very crowded playground. He even went into the Tropical Forest exhibit which is inside, dark, humid and a little stinky which he never does ((We did bribe him with Ms but still, you canNOT bribe a child with FX into doing anything if they are struggling. Cold hard truth right there that so many people do not grasp.))!

Overall it was a great day and he ended his day by coming home and cuddling on the couch with Grampy. Does it get any better? Grampy, for sure, would say no 😉

The real test, most likely, will be school. Which starts next Tuesday…which also just happens to be his first day with no Celexa at all. Perfect planning, eh?

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?