Iowa for the Weekend

I think I have some evidence of the Arbaclofen drug trial being successful for us.  Or at least, beneficial.  On Saturday, Zack jumped around in a bouncy house with a bunch of other kids and he didn't pinch or bite anyone.  We watched him climb in there with the other kids, and were nervous; we hovered around the bouncy house, watching him mingling with the other kids.  Aliza watched him too.  But he was fine.

 

We attended a gathering of the Heartland Fragile X Alliance in at the home of a Fragile X family in Boyden, Iowa this weekend.  It was out at a farm and it was something of a Fragile X child's paradise; wide open spaces, no walls, highways, hills, bodies of water, or buildings in most directions as far as the eye could see.

 

I didn't even realize how citified I've become until I was out at this farm where the land meets the sky with nothing in between. 

 

Kind of a bad picture I took through the car window.  But at least I got a few of the wind turbines.

 

I didn't even realize how little you can see of the sky, at home.  It's not like our neighborhood has skyscrapers, but we are close enough to the big city that I almost never see stars.  Maybe a few.  Just the biggest ones. I don't know.  I don't even really look up anymore.  How sad is that?  I'm very engrossed in my own little space in the world.

 

It was good for all of us to escape the city. 

 

I was struck with the differences in our big city way of life, compared to these tiny communities.  I wondered how one raises a child with special needs, when one lives in a town of only a few hundred or even thousand people?  We are so spoiled.  Sure, we have to drive to Chicago to be a part of the drug trial, but I drive only a mile or so to get professional private speech and occupational therapy.  We had a variety of excellent ABA therapists working with our boys almost daily for 3 years.

In a town of 3000, how many trained therapists are there to pick from?

I can't imagine getting a diagnosis like Fragile X Syndrome and living in such a secluded area.

Yet, all these kids seemed to be doing great.

Prettied up with Instagram, one of my new favorite things.

It makes me think.  Isn't all this early intervention therapy my boys are getting supposed to help them be more tolerant of people and noise and unfamiliar places (which, granted, they are more tolerant than they were a couple of years ago)?  Doesn't all this early intervention that we are so lucky to have access to ensure that our boys will be less "Fragile X"y and less autistic?

Another Instagrammed photo.

Because they aren't, as far as I can see, doing any better than the small town kids without access to all the fancy, expensive therapy.

Maybe the benefits are more long-term, and can't be seen by the naked eye, quite yet.  Who knows.

What I do know is, a lot of those kids handled the party a lot better than Zack and AJ did.  Maybe it's in the parenting styles.  The Fragile X parents there we all so laid back.  They didn't seem to hover over their Fraggles as much as we did.  Maybe none of their Fraggles have ever been known to leave bite marks on other children.

I wish I could stop comparing.

The boys did much better than they would have even just one year ago, though.  That's why I attribute credit to the Arbaclofen.  Zack ran around in that bouncy house with a bunch of other kids for a good hour and didn't reach out to anyone.  A year ago I could never have let him in there.  I'd have had to follow behind him, bouncing along.  Which my 42-year-old ankles and knees would not have appreciated.

And of course, this road trip involved a hotel and a pool, which are two of our favorite things lately.

Largely, Zack still prefers to hang around by himself. 

Maybe, if the Arbaclofen continues to help Zack be relaxed around other kids, we will be able to relax a little more in social situations, stop hovering over him, and allow him to blossom and maybe even make friends.

I was thrilled to see some friends from the Fragile X world, and to meet some new ones.  For me, a big part of being successful as a parent of Fragile X children is not feeling like I'm the only one.  I love being in a place full of parents and friends just like me, and kids just like mine.

56 Degrees

It's been a long, hot summer.  We barely held on.



But we made it - the humidity has broken.  It's 56 degrees this morning, and guess who is completely calm and not biting, at all?

Zack.

I spent all summer thinking, is it really the heat?  Or could it be something else?  Some allergy?  Some vitamin deficiency?  A fabric sensitivity?  I don't think so.  The relief Zack feels when the humidity and heat dissolve is obvious.

(And Zack's calm demeanor this morning is the reason I have time to sit at the computer and type this up!)
I have tried brushing Zack a lot - a couple of hot, humid weeks ago Zack's occupational therapist at Courage Center suggested that maybe he needed more brushing.  So I had been doing it every day, several times a day, up until yesterday when Zack abruptly grabbed the brush out of my hand and threw it across the living room.

I'm trying to love all this time with the kids, but like every summer before this one, by August, we've done it all. All the summertime fun-ness has been had. Every park looks just like the one we were at last week. Swimming is still fun, but we are done with it in less time than it took to pull swimsuits on.

Aliza comes running every time the mailman comes down our street. Any day now, the letter revealing the name of her teacher will arrive.  It's almost that time.

One thing that blows these summer doldrums right out of the water, though, is the love and kindness of neighbors.

Our neighborhood has always had a party for National Night Out, now known as Night to Unite.  This year, though, the lady who coordinates it couldn't do it, and no one stepped up to take her place.  A lot of the kids were sorely disappointed, my own daughter included.

So a couple of moms decided to throw a party next week, a belated Night to Unite.  We are gathering in a neighbor's driveway, and they are going to sell root beer floats for $1, and the flyer says they will donate the proceeds to the National Fragile X Foundation.

I'm always surprised at how touched I am by things like this.  Unexpected gifts.

Our boys aren't out and about the neighborhood much.  I try to get them out, but they don't mix well with other kids.  It takes a lot of effort to get them to even be in the same driveway as their peers.  Especially when it's 100 degrees and humid, and Zack would just as soon sit down and bite the skin off his legs.

At least he's only biting himself.

Anyway, part of what's so nice about this is the fact that I'm always wondering just how much our neighborhood knows about Zack and AJ, and their disability.  It's hard to be out, but if we aren't out, we can't expect anyone to know or understand them.  I always tried to bring them out to the Night to Unite party, at least for a short while.  I missed being able to do that this year.

Evidently, they understand much better than I thought they might.

Anxiety on the Rocks

Shaken, not stirred.  That's how I like my anxiety.

The boys have developed a new way to express their anxiety.  They've always been calmed by counting, but lately when stressed, the two of them will shout "nine, TEN!"  Over and over.  "nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!  nine, TEN!"

Out and about, people tend to notice the kids who shout out two numbers much moreso than they noticed two kids who randomly counted things.  Not that I care what people think. 

Otherwise, they still let it out in their usual ways; AJ cries and chews on his clothes, and Zack pinches people and screams.

Today after school we had speech and occupational therapy at Courage Center.  It's kind of a long day for them, but they are usually up for it.

When they were all done with therapy, they come to me in the busy waiting room, ready to go.  Zack needs to go right then -- he's got no patience for my chatting with the therapists, getting the lowdown on how they performed.  He is not interested in stopping in the waiting room for even a second.  He barrels right on out, unless I hold him back.  Then he starts in on the therapist.  The poor woman, who only moments ago he was having a great time with, is now the target of his aggression.  He reaches to pinch, we both tell him no, to be gentle....

Anyway, this was the scene today, too.  Both boys started for the door in front of me while I said goodbye to the therapists, and another boy in the waiting room, who was there for therapy (and who I'm guessing has autism), suddenly screamed when Zack walked past him "HEY!  THAT KID PINCHED ME!  REALLY HARD ON PURPOSE!"

Time stopped, while everyone stopped what they were doing to look over.  Zack started to scream and cry.  AJ backed against the door.

And it's not like this has never happened before.  Actually, this happens way too often.  How come every time, though, I totally can't remember how to handle it?  I have rehearsed this in my mind and in real life.  It happens.  Zack pinches and sometimes bites kids.  But I still I stopped for a minute, not sure what to do.  The kid's mom told him she was sure Zack didn't mean to hurt him.  The kid continued to holler.  "YES HE DID!  HE PINCHED ME ON PURPOSE!"

I told the kid I was sorry too, and that Zack gets really really nervous around people.  I told Zack "Zack, say 'I'm sorry.'"  And then I said a superquick silent prayer, because you never know if Zack is going to say what you tell him to say.  PleasesaysorryZackpleasepleasepleasesaysorry.

And he did.  "Sowy."  And then he cried.  On the way out to the car, Zack got over it and stopped crying and screaming, and AJ started to cry.  AJ cried for about 45 minutes.  He was really upset about the whole thing.

Anyway, you see what I mean (in the post before this one), when I said I wished for a little more from this medication that is supposed to help with social anxiety? I can't take Zack anywhere without it ramping up anxiety for all of us, because you just never know how he's going to do.

And I can't help but think about the fact that we just increased the dosage for both boys, and the last time we increased their dosages, AJ cried all the time, and Zack became a lot more aggressive.

It's too soon to draw those conclusions, but it is on my mind.  Sigh.

And now I will wrap up this stressful and unhappy post with a couple of cute swimming pictures, so it's not all doom and gloom.

STX209 Drug Trial - Rounding the Final Bend (UPDATED)

We are starting our 11th week today.

Two weeks to go.

These last four weeks are a weaning process.  If they have been on the medication and not the placebo, right now they are weaning off of the medication.

And darn it if I don't notice some regression in the behavior problems.

I'm so blind, so oblivious, so busy denying that there were any changes in their behaviors and saying I was pretty sure they were on the placebo -- I didn't even really notice how much less AJ has been biting me.  And how much less Zack has been biting and pinching other kids, and screaming.

Until it started up again.  Zack started screaming about something two days ago.  And it dawned on me ... it's been quite awhile since he screamed about something.  His "oh no, you're mad, I did something wrong, I'm so upset with myself, please don't be mad at me, I can't take this pressure!" scream.

And the clapping.  Zack does this thing where he gives you a pleading look and claps lightly.  His way of saying "I did good, right?  You're happy with me, right?  Please applaud me so I'll know I have your constant and undying approval." 

He hasn't done that in so long, but the last couple of days - he keeps prompting me to clap for him.

When I try to hold AJ back from something, he leans over to bite me.  Or when I'm trying to change his clothes, and he thinks he has better things to be doing.

He chews on his sleeves.  Right up to the shoulder, he soaks it.  He also chews on his fingers.  Not all the time.  But it is a behavior that stopped for awhile, and then started up again.

So again, there are probably 10 different things to which we could attribute the changes in their behavior.  The weather has changed in the last week -- it snowed and it is suddenly much cooler and drier.  Thanksgiving week was a drastic change from their routine.  We decorated for Christmas, which is probably stressful for them.

Or, it could be the reduction of the STX209.

In about a week and a half we go for our last trial appointment.  Then we'll start the extension - and we'll KNOW they are on the medication.  We'll start at a low dose and work our way up, but at least we'll KNOW.

12/6/2011 UPDATE:
Evidently I forgot to mention that we WON'T be finding out whether they were on the drug or on the placebo next week.  We won't know until the entire drug trial is over and it's approved by the FDA - which most likely will be sometime in 2014.  Then they'll tell us what each of the twins was getting during the trial..... I'm pretty unhappy about this.  I may have to write up some reflections of the drug trial, overall, to publish later.