What would you do?

What would you do?

If you were me, if you had this most amazing child…this sweet, funny child…this handsome, clever child…what would you do to keep him whole? What would you do to save his voice, his sly sense of humor, his joyous personality? Would you sit quietly while pieces of him slipped away from you? Would you accept any excuse for this loss?

Maybe the question should be, what wouldn’t you do to keep him?

What is happening right now, this sudden termination of the STX209 extension, it isn’t acceptable. I cannot sit quietly and allow this to happen to him, to my family. This child is the very heart of our family. He is the sun and the moon. He is the laughter and the pride. He is everything.

You cannot assign a value to this child, to his voice, to his life. He is precious and priceless. Do not tell me that you are sorry. Do not tell me there is nothing I can do. I have a voice and I will use it. I will fight in every way I can…even if I am destined to lose the battle, I cannot NOT fight. I cannot give up on him. I cannot give up on all of the other children who are depending on this medication for their voices, their lives.

Look at this face…

LOOK at him and tell him, sorry kid…we are just out of money, there’s nothing more to be done, we’ll let you know if we think of something though.

Look at this face…

LOOK at him and tell him, sorry kid…you have to send back those pills now. We know they help, we know you have enough for 2 more months but…we need them back now.

Could you do it? I know I couldn’t and live with it. I’m not sure I can even send them back and live with myself…

Please sign the petition, visit Change.org.

To learn more about the termination of the STX209/Arbaclofen trial please visit the National Fragile X Foundation.


Today, we start again.

Today, we start again.

Yesterday, Caleb turned 9. He had a party at school to celebrate and he loved it. Yesterday, I was looking at pictures of my smiling happy boy with his friends. Yesterday, for the first time, I didn’t meet one of his birthdays with a feeling of dread. Yesterday, I was not scared that another year had passed and that we were still stuck in Holland.

And then I learned that the extended trial of STX 209 is over. Done. We had heard rumors of money troubles but we all hoped for a solution and some advance notice. We didn’t get either.

I woke up this morning hoping that I was having another of those awful dreams I’ve been plagued with lately. The dreams where people are trying to hurt or kill me, after all, you couldn’t find a better way to hurt me than through my child…but it’s not a bad dream. I stood crying at the counter this morning setting out Caleb’s breakfast, which is always accompanied by a spoon of applesauce and his morning meds, knowing that we’re one dose closer to the end.

I would like to say I’m angry and ready to fight but the truth is, I’m lost. I don’t even know where to begin. I’m wracking my brain right now trying to find the answer. You cannot turn around in this town without bumping into either a Dunkin’ Donuts or a biotech firm. There are pharmaceutical companies of all sorts here and I’ve worked with many of them over the years as they’ve sought round after round of financing to keep afloat. There are private equity firms of all sorts here and, again, I’ve worked with many of them over the years as they provided round after round of financing to keep businesses like Seaside afloat. I’ve seen some of the most improbable saves and some of the most improbable failures. I know nothing in this business is guaranteed, there’s a lot of money here because it’s expensive work. Changing the world takes lots and lots of money.

But I’ve come up with nothing except this…there is someone out there who has the answer. They have the money and the heart to be our hero, we just need to find them. Please, please help me find them. Write to your members of congress, they know people! Tell your neighbor, your minister, your local paper…the more people we have looking the sooner we will find the one we need. I refuse, refuse, to believe that this is as far as the story goes. I’ve never expected a fairy tale ending, but this…this defies logic. We are almost there. In the face of incredible odds, Seaside has gotten us to the point where we can see the goal line…now we need that one person to stand up and either clear the way or give them a nice big push from behind.

One person. That’s it…please help me find that person. Please, if you have the resources to be that person…take your chance to be a hero.

We started our journey with this quote…

Oh, the Places You’ll Go!
by Dr. Seuss

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.

We may be lost in streets that are not marked just now but we won’t stay here long. I promised Caleb we were leaving The Waiting Place last October and I am not breaking that promise. Even if this isn’t the way we ultimately get there, we are done waiting. Done.

If you want to know what STX 209 has meant for us, read these posts: STX 209 – Phase II Trial

Now this is what I’m talking about!

Now this is what I’m talking about!

When I go on and on about the changes we’ve seen in Caleb since starting the STX 209…this is a perfect illustration of what I’m talking about.

Yesterday, after a long day of school and work, we got home. We followed our normal (read: insane) getting home routine which involves everyone getting upstairs, getting jackets and shoes off, getting Tucker out so he doesn’t make a mess in the house, getting naked (Caleb only) or changed into pajamas (Money only, Daddy doesn’t play along.) It’s a big flurry of activity with Caleb yelling out commands for us as he works through the steps.

This is all routine…habit…after almost 9 years he has got this down. But yesterday when we got home I could tell by Tucker’s bark that he needed to go out NOW, so I raced straight to the back of the house dropping my purse and coat along the way. I made it by the skin of my teeth and when I got back upstairs I was a little short of breath. And perhaps a little hormonal ((TMI, I know.)). So I wasn’t at my most accommodating.

About the 47th time Monkey asked me to hang up his coat because he can’t reach (and we still haven’t put up a hook so he can) I might have snapped a little. I might have looked at him steadily (he is making AWESOME eye contact these days) and said very quietly (in that Mommy-is-this-close-to-losing-her-mind quiet voice)…”Caleb. Mommy is busy. Hang.it.up.yourself.”

He spun away from me and retreated toward the front of the house, he’s a very, very smart boy. I took a couple deep breaths, counted on my fingers and in an “A-HA!” moment realized I wasn’t a little hormonal…I was A LOT hormonal. OK then. I took a few more deep breaths and as I was getting back to normal I heard him return.

“I did it! I did it! Well done!” he exclaimed, half crying and signing ALL DONE with a nice exaggerated movements. This did not make my Mommy heart jump for joy, oh no, this made it sink to my toes. This was the kind of self praise he does when he knows he’s done something he shouldn’t have done. It’s a confession and a not so subtle attempt to tell us what he wants us to say when we see what he has done and an apology for how unhelpful it turned out.

This is the “I picked up dog poop with my bare hands but the floor clean!” self-praise. The “I put dirty dishes in the dishwasher when it was full of clean dishes” self-praise. The “You might want to get a picture of this for Facebook” self-praise. Oy.

I set off, trying to figure out what he could possibly have gotten into in 45 seconds. The dogs were still out, he hadn’t been in the bathroom…or the kitchen. Where was his jacket?? I looked around the living room, doubled back and checked the dining room, glanced at the kitchen and dismissed the idea…he wouldn’t throw away his coat…

“Caleb, where is your coat?

“I did it! Well done!”


He walked around me and out into the hall and came back carrying his stool…the one from the bathroom. I hadn’t even seen him go in the bathroom. He went and put it away while I walked over to the front hall. I looked, expecting at best to find something like…oh…this.

BTW, in case you are wondering, that isn’t my size…

But there was nothing, and his little orange coat kind of stands out. I began to turn to go back into the living room and glanced in the closet and was totally and utterly floored by this…

Do you SEE what he did there? He hung up his coat. He couldn’t reach so he grabbed a stool from the other side of the house. He couldn’t get the jacket to stay on a hanger so he took a hanger down (the one with the inner liner of his coat already on it), looped the jacket over it and hung it back up. Then he put his stool away.

All because I told him to hang up his jacket himself. No prompting of steps, this isn’t something we’ve ever practiced. He just DID it…all by himself. He problem solved and DID it.

THIS is what I’m talking about…this is what this medication has given to him and to our family.



Thanks to Kathleen Quinn my blog about Caleb’s improvement on the STX 209 trial caught the attention of the editor at baystateparent…and she decided to publish it!

It’s a little different than the original post, apparently their entire readership hasn’t been hanging on my every word over the years and thus needed some background information. Whatevs.

Anyway…check, check, check it out!

Hoping for too much?

Hoping for too much?

I often struggle with pessimism. I know, I know…I’m the ultimate silver lining in a bad situation kind of girl but I try so hard to not let myself hope for too much. I prepare for and expect the worst which is what makes it easy for me to find that silver lining when bad things happen. Hoping and wanting good things is torture to me, the anxiety it generates is paralyzing.

This is why when we began the STX209 trial, Eric and I agreed from the outset that Caleb was on the placebo. My heart nearly broke each day as I watched him so closely, despite that agreement, for any sign of improvement. What if he is on the full dose and it didn’t help him? That to me would be the worst possible outcome. That would have killed the hope I have had in my heart since the diagnosis that we would find something to fix this, to make this better, to make him happier and more successful.

During the trial we saw glimmers of improvement, increased eye contact, decreased anxiety, but I refused to let myself believe it. It wasn’t until Caleb’s last IEP meeting, when we heard his teachers and specialists confirming that they saw the same at school, that I actually allowed myself to believe he was on something. I still hoped fervently that it wasn’t a full dose because I want to keep that hope, that the glimmers would become so obvious that we couldn’t deny their existence, alive.

Then we titrated down off the trial. It became clear immediately that Caleb had been on something. His anxiety shot through the roof, his emotions fluctuated wildly, we were left with a child who was just flailing in every aspect of his life. He was out of control which, fortunately enough for us, meant tears and whining (ZOMFG THE WHINING) but no aggression.

We could not wait to start the open label trial, the wondering part of the initial trial was over. We knew he was getting the medication and we knew how much. It wasn’t a very happy process for us to start. Caleb still seemed to be struggling emotionally and we didn’t see any improvements. We noticed that for 24 hours after we increased his dosage his emotions fluctuated wildly, his appetite would disappear and he was incredibly sleepy. He even fell asleep at school a few times. And still we saw nothing.

That fear that he wouldn’t respond to the medication resurfaced. I began to have doubts that he had really improved during the trial. I began to think we had fallen victim to the placebo effect and imagined it all. I began to think maybe we needed to stop the whole process, he had been so happy before we had taken him off the Celexa in the fall and now we were just playing with his moods. It reignited all of those painful thoughts I had struggled with before agreeing to the trial in the first place…thoughts of experimenting on my own child. Thoughts that I hadn’t truly loved him just as he was, that I was doing all of this for my own selfish benefit because I still couldn’t accept that I had a child with fragile X…that this was our life for now and forever.

Then I noticed a small something, it was the same small something that had let me know that the Celexa had been working oh so long ago…Caleb’s eye contact returned. He would engage us in play and, no matter how excited we all got, he maintained a consistent level of eye contact. When we ate dinner he would look straight at me when I spoke. Though my worries began to ease, I still wasn’t confident enough to voice that.

Last week, finally, I whispered to Eric as we were all playing on the big bed, “He’s looking at us.” and Eric agreed that he’d seen it too. I crushed that ridiculous little flutter of hope with the weight of my continued worries over his emotional struggles around medication increases, his loss of weight due to his appetite suppression and his exhaustion at the end of each day.

I find though that I can no longer deny that this medication is working. Too much has changed too quickly, too obviously, for me to continue.

He is more independent in our routines, I can ask him to do something and it no longer matters how many steps are involved…he will do it with virtually no prompting. The only prompting I find myself doing involves him getting distracted by what he’s watching on TV…it’s so very typical for his age that I can’t even really consider it prompting in the same sense. If I pause the movie or TV show he will quickly finish what was asked of him.

He takes initiative, I don’t have to ask him to do certain things anymore. If I tell him it’s bedtime I don’t have to ask him to put on his pajamas, find Grabbit and get into bed…he will do all of that…again with the minor distractions that you expect from an 8 year old who isn’t quite convinced I meant that it was bedtime right that very minute, he might grab a toy or a book but he’ll lay it aside and continue if I remind him that it’s bedtime.

He is doing chores, willingly and without being asked…he has helped fold laundry, he loads and unloads the dishwasher, he will run around the house and pick up dirty dishes and put them in the sink. When we go grocery shopping he will grab a basket and carry it until his arm nearly falls off. We tell him what we need and he will grab it and put it in his basket. If we forget and grab it, he will chose his own and ignore whatever we picked up.

His social skills are improved, during the storm we were outside with a big portion of our neighborhood cleaning up and he greeted everyone, some with handshakes and others with a, “Hey ‘sup?” Many of those who were out there are virtual strangers to him but he never hid his face, he wandered freely amongst the houses while keeping an eye on Eric and I. At the grocery store the clerk remarked, “He must keep you laughing all the time.” based on Caleb’s greeting and obvious understanding of the entire process and his eagerness to help us all.

His verbal skills are improved. He has more words…sentences…paragraphs…he tells us about things that happened, not just things AS they happen. He repeats everything, we have taken to calling him “The Echo” which always earns us a quiet “echo” from him.

He’s planning. He found a Christmas catalog somewhere, found a Nerf gun that he wanted and asked for it. He knew where to get it “ToyRUS?”, he would tell us what color it was to differentiate it from the others on the page. When Eric took him to ToysRUS to buy it, he wandered up and down the 4 different Nerf aisles until he found the exact gun that was in the catalog. While Eric scanned box by box looking for it he took a glance and immediately knew those were not it, some were close but not it…and he kept looking. Oh, and, when he saw the catalog…he read “Nerf” and pointed it out to us.

I could go on and on but what I’m saying here is that (except for those 24 hours after a dosage increase) he is calm, focused and independent. His air of capability is remarkable, he has no doubt about what to do or how to do it…I watch him in awe these days. I’m not sure I can convey what it is like to see a child go from a toddler to a kid almost literally overnight. He is changing so quickly, so drastically, that the biggest risk here is that we will continue to baby him too much when he’s really OK on his own. Other than other FX parents who are on this trial, I’m not sure anyone will ever experience watching your child seemingly mature years in just weeks.

And it’s not just us…Caleb’s teacher reports that he is increasingly independent at school as well. She can send him to the office alone, she waits for him at the top of the stair still but she doesn’t need to. When we drop him off at school he walks through the classroom door easily, often with no prompting…after years of tears over this task…it’s magical. And when he’s ready to head out with his friends to start his day he’s right at the front leading the charge to the next class.

Oh, and…he’s at less than half the ultimate dosage still. I’m not sure I can even hope for too much at this point, he’s changing faster than I can dream new dreams.

Study Update – Week I don’t have a freaking clue.

Despite the best of intentions I have been plagued with the “Is he getting the placebo or the drug” question throughout the study. It’s so very hard to not stare intently at him each day trying to judge, is he whinier than usual? Is he more social? Is his language better? It’s enough to make a Mom nutty, assuming she isn’t already there!

For a long time I would have sworn he was on the placebo. We noticed nothing different. He was the same sweet, awesome kid. There were no moments where a light bulb suddenly popped on. I guess maybe, despite understanding that it takes time for things like this to build in your system, we didn’t really believe that we wouldn’t notice anything because it was so subtle. I mean, I KNOW my child. We are pretty darn focused on every thing he does or doesn’t do on a daily basis and have been for 8 1/2 years.

When I commented on it, I was told by other parents who’d been in the same position..”You will know once you start titrating down.” Mmmm, hmmm.

So, we’re titrating down now, we’re about 1/2 way off and O.M.F.G. Clearly, we were on something. Caleb is still sweet and awesome. He’s just sweet and awesome with a side of “holy emotional roller coaster” and a dash of “pleasepleaseplease stop whining!”

He is also capable of sitting and focusing on a toy appropriately for long periods of time while we visit with family. I thought it was a fluke on Christmas but he spent almost all of Saturday quietly entertaining himself while we visited with my grandfather. His attention has improved so much that I even floated the idea of removing his ADHD medication to see if the study drug alone can handle that. His overall improvement has also been commented on by the school and by family members this holiday season.

So, in conclusion…yeah, something was going on and now something more is going on…and January 11th cannot get here fast enough! There is zero question about that Open Label Trial now!

Do you know four square?

Not the social media site but the game? Until two days ago I had never heard of it, then Eric reported that Caleb is now playing it at school. Wait, what?

Four square, also known as Square Ball or handball, is usually played with a rubber playground ball, a volleyball, or a tennis ball on a square court with four maximum players, depending on the rules (Big Four Square, Six Square, etc.). The objectives of four square are to get another player into dunce (out) and achieve the rank of king, or ace.


There are rules and strategy, though I am positive that the games on the playground at Caleb’s school are not nearly as cut throat as Eric was describing. Caleb has been very interested in the game but he wasn’t able to play. It involves a lot of hand-eye coordination (which he rocks) but it also includes turn taking (umm) and motor planning to get the ball to land in specific spots…this isn’t easy stuff for this boy of mine. He stuck to games of chase or shooting hoops, things he gets and enjoys immensely.

Over time though his interest has not waned and over the last couple of weeks, it was reported, he has moved from observer to participant. And he’s doing much better at playing even. Do you think it’s a coincidence that the last couple of weeks lines up with the highest dose of the study drug…if he’s not getting the placebo?

I guess we’ll find out when the weaning starts…

Day 6 – He’s just the sweetest

Day 6 – He’s just the sweetest

It was an eventful evening here tonight. First, we were told that Caleb fell asleep at school today which is troublesome…he never naps…why is he doing it at school and not at home on a Sunday afternoon when I can take advantage of it? All kidding aside, this can only mean one of two things….either he’s getting sick or he’s going through a growth spurt.

Unfortunately, it appears to be the first. He was a little rashy and slightly feverish but ate fine and acted like an itchy version of his normal self. We shuffled him off to bed as early as possible though our bedtime cannot be moved earlier due to that trial medication. He has to wait at least 4 hours between doses and that third dose can’t happen any earlier than 8. SO, when he was finally cleared for a crash landing in his bed he got a little demanding…of course he’s incredibly sweet when he’s demanding…he simply asks for what he wants with a slight smile and a lilt to his voice…over and over and over and over until we just give in.

Tonight he decided he needed some Sneaky cuddle time. Of course this is NOT allowed, you are not supposed to touch the elf,but we had requested some vitamins from Santa just in case something like this came up. So we handed over Sneak and Caleb smiled, kissed him good night and tucked him into bed. Aww!

When I went to get Sneak to help with the mischief for the evening, I found this…

Umm…whatcha’ doin’ Sharkbait? It looks like I rescued Sneak just in time!

After soothing the poor dear with lots and lots and LOTS of sugar…things got alittle out of hand…

I would be worried about who was going to get stuck cleaning that mess up tomorrow but I’m pretty sure I’ll find Caleb licking the table saying, “Mmm, needs sugar!” by 5:30 AM. If I stay in bed long enough he should get the whole pile cleaned up. Here’s hoping he’ll feel well enough to go to school, otherwise Eric won’t be too pleased with the sugar high Caleb will be riding.