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.

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

We had a very happy Monkey who talked about his friends Peter and Jesu-rique (Jesus Enrique in Caleb-speak.) and the circus all morning long. He gave up his booster seat for the day so the boys could all smoosh into the middle seat together. He laughed when his friends said “feeeesh!” to him. When they asked him to say their names he would do so and their faces lit up. He even answered some of their questions appropriately which brought a huge grin and an excited, “He talked to me!” out of them each time. You don’t have to be with these boys very long to see the love and friendship there, it’s a beautiful thing to see.

Monkey’s anxiety started to ramp up as soon as we got out of the truck but he followed his friends into a crowded elevator and through the revolving doors onto the busy street. Then he stopped. “Bathroom? Batttthhhhroom?” This is a favorite escape tactic so we exchanged glances and decided we should err on the side of caution with this and found a restroom. He and all the boys ended up having to go. I was really impressed that even with the excitement the other boys were super patient and even thought ahead so we didn’t end up having to make 3 separate trips to bathroom.

After we crossed the street to where the big top was set up, we were greeted with quite a long line for bag searches. Monkey was blocking his ears but he stuck with it. In fact, we managed to get through the line, through the lobby area and to our seats with very little issue. We sat with Eric and I bookending the boys with Caleb in the very middle between his friends. Eric bought popcorn and water for everyone which killed the time we had to wait. When the lights dropped and the ring master’s voice called out for the first time I found myself staring at Caleb. I could see the anxiety on his face. He looked at me and stood up, I signed “sit” to him and he sat back down.

It was a rough beginning, Eric and I were exchanging a lot of looks. We were not at all sure he would make it. We tried a few things without much luck and then finally offered him his iPad and his noise cancelling headphones. Caleb settled back in his seat, crossed his legs, pulled up PBS Kids and started watching Curious George. I went back to watching the show, casting covert glances in his direction. He would watch the iPad, then look up and watch the show, then go back to the iPad. It was working!

It worked beautifully right up until the last act, of the last performer, before intermission…the contortionist. He was really enjoying her performance, it was much quieter and calmer than the others had been. He kept pumping his fist in the air and saying, “Yesssss! Yessss!” whenever the audience clapped. Then she stood on her hands, arched her back, took up a bow and arrow with her toes and she shot a balloon on the other side of the ring. *POP*

And *POP* went Caleb’s calm. He jumped to his feet and began begging to go to the bathroom again. I looked at my phone and realized we had been there for 1 hour and 15 minutes! OMG! The other boys jumped at a chance to go so they all took an excursion while I guarded the last bits of popcorn. When they came back, Caleb still wasn’t happy. He said he was hungry so Eric took him out to the lobby to buy the boys each hotdogs. He had to bring him back in though because he wouldn’t listen to Eric and wouldn’t stand in line. It was a very long wait for him to get back, finally, with those hot dogs.

I’d hoped eating would distract and calm him and it worked, a little. When the show finally started back up we gave him the iPad again and crossed our fingers. He just had to make it 40 more minutes…

By the time the last of the cheers died down and the lights came up we were all ready to go. We did stop in the lobby, one of the boys wanted to spend some money he’d brought and I had it fixed in my head that they needed to leave with those plastic, light up, swords. I’m not sure why this was such a big deal to me but it was…so we made it happen.

We stepped out into the rainy evening and finally took a deep breath. We had made it. HE had made it.

It wasn’t the most inspiring of victories, my head hurt from the noise and stress of the day, Eric and I were a little snippy with each other while making dinner plans, but we all did it. Together. There is no way Caleb could have made it without those boys, they’re the heroes of this story. When he fussed, they made him laugh. When he struggled to sit in his seat, they touched his legs and stomach…giving him comfort and soothing him. It was amazing. And on the entire trip home as my patience with his anxious scripting grew thin, the boys chatted happily together and tried repeatedly to draw him in even when he was completely not responsive. They never gave up…it never even crossed their minds to give up.

Rough as it was, undocumented as it was (there was no way I could take many pictures while he struggled so badly!)…it was another inchstone met. Caleb’s first typical circus? CHECK!

Eric and I had an interesting IEP meeting yesterday. We are still having meetings every 4-6 (mostly 6) weeks, per his IEP, even though I’m not sure we need it now. Things have been going so smoothly with his team. We love his teacher, the aid, the specialists and the school. LOVE them! The communication we have with his teacher is terrific. If something is going on that we should know about, we hear about it immediately. Plus we get tons of cute stories.

Let’s start with the good stuff…

1. They are all so impressed with how social he is…he’s a social butterfly this boy…

2. They are seeing how much better he performs when he’s in a group with peers rather than 1:1 with staff…one example…the PT struggles to get him to demonstrate skills for evaluations even though he uses many of the skills in Gym class as part of games.

3. He is more motivated by real world activities than table top activities. Example, he will unsnap his own coat with much less whining that he will unsnap the snaps on the manipulative his OT has been using. Notice I said “less,” he’s still not a huge fan of those fine motor activities.

4. He *loves* his Assistive Tech specialist now that they have switched to an iPad rather than that VantageLite he hated so desperately. And he’s using it with much less resistance.

Most of this is pretty standard FX behavior and  so we were able to share some ideas that we’ve picked up from other FX parents.

The BEST part of the whole meeting is that since he is demonstrating how well he does with typical peers, they’re going to start integrating typical peers in some of his pull outs. Anytime I hear this it gives me warm fuzzies…I do so love any effort to involve his school community and peers more! It really makes the first 5 years of struggling to maintain integration totally worth it.

Now…the not so good stuff…

He’s struggling emotionally. We are investigating the why but for the last month or more he’s been crying at school more and more often. And the bouts of crying are lasting longer. It just breaks my heart to hear that, especially since they’re trying so hard to find out ways to break him out of those episodes but the old ways just aren’t working. He’s not responsive to his peers during these times and his teacher and class aid also can’t bring him out of the funks. My poor baby.

We have theories…lack of sleep (he’s been having nighttime wake ups again) or anxiety (I hate this part of FX!) top my list but they are doing an FBA to see if they can pick out a pattern.

The sleep thing is really just a theory. We have no idea how often he is waking up since he’s now staying in his room to avoid setting off the motion sensor which wakes up Money (and sometimes Daddy) which results in an immediate return trip to his bed. Smarty pants. In the car on the way to work I mentioned maybe we should do a sleep study but…yeah…I’m not ready to sign up for that torture! I recalled that a neighbor had used an app once to track his sleep on business trips. After a little investigation, Eric found one that will work on C’s iPad. We hid it under his sheets last night (it works by sensing movement). We will be getting graphs like this from it every night.

After a few days of collecting data it will be calibrated to him and his movements and we’ll be good to go for collection purposes. This one doesn’t look too bad, it looks like he fell asleep pretty quickly and slept until just before 5 this morning. He did not go back to bed then, he got up and it kept running until we shut it off.

As for the anxiety…we’re probably going to go back on the Celexa. I’m a little disappointed, I’d hoped that the study drug would be enough but it’s not at this point. I know all the researchers keep reminding us that the best treatment will likely end up being a cocktail but my ever optimistic heart really just wants the magic pill still. Damn it.

I feel OK overall about where we are at. Caleb’s language in particular has made huge gains over the course of the year which is so exciting. He’s doing really well on his speech goals, even the one his ST looked back on and thought she maybe shouldn’t have included because it was pretty ambitious, lol. And even though we do have this pretty significant issue of his emotional state, we have some good ideas to try. We have his 3 year re-evaluation next month so we will touch base with the team one more time before the year is out to see what we can figure out.

So, nope, my life still isn’t perfect *sigh* but we’re still reaching for it!

In other happier news, we have done our 2nd family run and it went amazingly well! We used all new visual markers because we don’t want him to get fixated on any specific markers and he giggled his way through 2.5 miles of walking and running. I have never enjoyed running more than I do right now.

Caleb insists on holding tightly to my wrist. He runs in great big, galloping, strides alternately racing towards his dad or turning his shining face towards me. When we are walking he greets other walkers and runners, he offers high fives to a few and smiles to all. It is an amazing thing to run next to this boy and watch people watch him. It doesn’t matter if it’s a 70 year old woman, a 20 something drenched in sweat and running a pace I will never reach or a parent pushing a stroller…their faces soften when they see him and they’re smiling by the time we pass them. A few times I looked over my shoulder, watching for bikes or runners approaching from behind, to see people looking over their shoulders at him.

This child is a gift, I feel it all the way to my toes and my heart just bursts with pride when I see others, complete strangers, recognize it.

I’ve set myself a goal, either I or Eric will catch Caleb on video during one of our upcoming runs…you really just gotta see this…he might even make you want to run!