What time is it?

I have been, as far back as I can remember, a night owl. Sometimes it’s insomnia, I remember laying in bed for hours as a child unable to fall asleep, and that sucks but I stay up late every night. People look at me sideways when I say I stay up to 12/12:30 every night but that’s normal for me. If I’m up at 2 or 3, then I’m having a problem.

The trouble is that, no matter what we do, no matter what time he goes to bed, Caleb very, very rarely sleeps past 6 AM. These two things do not work well together! And to add to it, when he wakes up he always bypasses Eric’s side of the bed….which, may I point out, is MUCH closer to the door than my side…and comes right to me. Just one of the many perks of being Money.

Lately I’ve been having trouble sleeping. Why? Because I’m a damned carrier that’s why! Night sweats. NIGHT SWEATS people…I’m way too young for this shit. *sigh* Gooooo FXPOI! Anyway…staying up late, multiple night wakings and a 6 AM wake up call…it’s not pretty. Caleb usually finds ways to make everything he does cute…but he has not found a way to make a 6 AM wake up call even just “OK” and it sure as heck isn’t “cute” no matter how much he tells me otherwise.

Monkey: “It’s so cute, Money! So cute!”

Mommy: “No, you know what is cute? You SLEEPING in. That is so CUTE it would blow my mind!”

NO, I don’t ever say that. Sigh. I do think it pretty hard though.

Until this morning I would have sworn up and down ((and sideways too.)) that there is no such thing as a cute wake up call…and I would have been proven wrong, as I so often am, by Caleb.

Curious what a cute wake up call is like? It’s my little Monkey standing at the side of the bed whispering.

Monkey: “What time is it, honey?’

Mommy: “What?”

Monkey: “What time is it, honey?”

Mommy: “I dunno, bud, what time is it?”

Monkey: “It’s six-firty, Money. Six-firty.”

A year ago…we barely had SENTENCES….now we have paragraphs. Appropriate context paragraphs even.

Now if only I could convince him that he should stay in bed until seven-firty once in a while…

Humbling.

It’s a strange moment when you realize that the hopes and dreams you have for your child, the ideals you wish to impart to them are more than you can ever be yourself.

Caleb is, quite simply, the best person I’ve ever known.

  • He loves unconditionally.
  • He is empathetic. He will never roll his eyes because another child is crying loudly and disturbing his peace. It hurts him to see people hurt and he wants sincerely to make it better not just make it stop.
  • He doesn’t ever judge people. He doesn’t care what you wear ((Just no masks please!)) or where you live or what you drive or what you do.
  • He doesn’t care what you can or can’t do for him, he will always reach his hand out to you and ask, “How’s it going?”
  • He doesn’t keep score, any wrong or harsh word is forgiven.
  • He expects the very best from everyone every single time…even if they don’t deserve it.
  • No matter how many times someone walks past him without responding to his greeting, he still greets the next person with just as much excitement.

This is why when anyone looks at me with pity in their eyes…I get angry. Seriously, angry. I can’t possibly convey to someone in that moment the truth which is, you shouldn’t pity him…you shouldn’t pity me…save that for yourself because you can’t know pure love until you love a child like mine.

And it begins…

On Friday, Eric took Caleb on the final screening visit for the Phase III STX209 drug trial. We did the phone screening ages ago, September, 2011 to be precise, and I wrote about it at that time (STX209 – You’ve heard of it, right?). That was when we discovered that, in order to do the study, the Celexa would have to go. There are no SSRIs allowed during the study.

We started talking about taking him off the Celexa then…and we continued to talk about it and drag our feet and gnash our teeth until August of this year when finally the stars aligned. The doctors and study people were all ready. Eric was ready. It was just up to me to say, “Let’s do this.”

It wasn’t easy. There was one moment, the night before we started the washout period in August, when Caleb looked at me with such love and trust that I very nearly pulled the plug on the whole idea. How was I going to take away something that I knew was helping him for a chance that we might get something better. I spent a long, sleepless night crying and finally decided to go with what has gotten me through all of the hardest steps on this journey...hope.

Prior to this visit, we had received a long e-mail from the study coordinator so we knew what to expect, we just hadn’t expected Eric to have to do it alone. It broke my heart to miss this, it was so unfair to leave the two of them to go this alone but it couldn’t be helped.

They began by reviewing the study and signing the consent form to go forward with the study. After that there were more forms. Of course there were more forms!! They included a basic demographic form and medical release forms so the study doctors and coordinator could contact and share information with Caleb’s doctors. Eric watched a short video explaining the main questionnaire used throughout the study, the Aberrant Behavior Scale – Community (ABC-C), and then he filled out the actual form. He wrapped it all up by completing the Visual Analog Scale questionnaire.

Then he met with the pediatrician, she reviewed the study criteria, his medical and surgical history, current medications and did a physical examination with Caleb. One of the things she did was an ASD screening. What Eric and I found interesting is that Caleb only met two of the criteria. Interesting since C has a PDD-NOS diagnosis. It’s interesting how many different opinions we have had on this over the years. 1. He doesn’t have it but it’s good for extra services, 2. No, he does not have ASD, 3. Yes, he has ASD, it’s on his IEP, right? and 4. He doesn’t have ASD. OH, wait, that’s only 2 opinions. The doctors (1, 2 and 4) and the school (3) ((Yes, this IS a sore spot with the school, even his super awesome we love them so much school!)).

They ended the day with urinalysis, EKG and bloodwork. Yes, the EKG and bloodwork sucked. I am glad I wasn’t there for these…everyone should be glad I wasn’t there for these. Mama Bear comes out to rip heads off e.v.e.r.y.t.i.m.e…and these smart and helpful people need their heads to keep doing the good work they’re doing. Even though it involves torturing small children…mostly my small child. Grrr.

I am sorry I missed the urinalysis though, it was the first time anyone has asked Caleb to pee in a cup. Eric got to hold the tiny cup. I really, really wish I could have been there taking photos of Eric as he realized Caleb didn’t know how to stop mid-stream to avoid an overflow. Those would have been frameworthy!

I was aware that there was a chance that Caleb wouldn’t be affected enough by his anxiety to qualify. When I asked Eric about this he said there wasn’t even a question that he qualified. Um, yay? I’m glad he qualified, don’t get me wrong, but it just sucks to know how obviously he struggles. It’s not something we think about daily so when we have to face it, it hurts.

The entire visit took 3 hours. Yeah, THREE hours. There was one slight hitch during the visit that added about a 1/2 hour…Caleb is study participant number 9 for this location. This may not seem like a big deal but it is a tremendously exciting milestone. You see, this is a small study location and historically they have struggled to find enough participants to even make being a study site worthwhile. In fact, it’s been so difficult that they believed that they would only be able to find 6 – 8 participants. Obviously, if Caleb is #9, they surpassed that goal which meant they had to get approval from the internal review board to change the study parameters. Permission was given earlier in the week but a slight mix-up resulted in the wrong paperwork being stamped. It took some time to clear up but they did it.

That night Eric fell asleep an hour before Caleb’s bedtime and didn’t move, except to pull the covers over himself, until the next morning. It was emotionally and physically draining. Caleb, on the other hand, was fine after he got his reward…a footlong meatball sub from Subway ((Subway! Subway! Eat fresh!)). We thought he would eat half of it at dinner and have half for lunch the following day. Saturday at lunch he at the 2nd half of my meatball sub because he finished his entire sandwich the night before. Holy moly!

So, what lies ahead for us on this new adventure?

  • Visit 1 – Start medication, complete the Vineland Assessment & behavior forms  ~2.5hrs
  • Visit 2 – Labs (bloodwork) & behavior forms  ~1hr
  • Visit 3 – Labs (urinalysis & bloodwork) & behavior forms  ~1.5 hrs
  • Visit 4 – Labs (urinalysis, bloodwork & EKG), Vineland Assessment & behavior forms  ~2.5 hrs
  • Visit 5 – Visit 5 is short if we decide to not enter the open label extension study.  Otherwise it will also be Visit 1 of the open label (treatment with arbaclofen for 2 years, visits average every 3 months)  ~2.5hrs

I think the only way we don’t do the the Open Label extension is if we have to stop this study before it is completed. We haven’t really questioned that part, it was the potential of getting the placebo that we struggled with.

Stay tuned…

 

Habit forming.

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!

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.

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 SpecifiedA 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?

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?