"Can people with Fragile X live a normal life?"

I like to check the statistics once in awhile, and see what searches people have been typing into Google that brought them to this blog.  Sometimes there will be really crazy search terms that I can't figure out how they could possibly be connected to my blog.  Other times, it's something so personal and profound, it makes me stop and think about what I'm doing here.  Like this one.

"Can people with Fragile X live a normal life?"

Someone recently typed that question into a search engine, and it led them to The Fragile X Files.

I assume it was someone whose diagnosis is still fresh.  Someone who is just beginning to find their way.

It sounds so, painfully, much like something I would have asked, six years ago.  Back when I was trying to figure out what the Fragile X diagnosis was going to mean for us.  Today, I don't know if I've learned the answer to this question, or if I've learned not to ask it.  I'd like to try to answer it, though, if I may, for this searcher.

I'm tempted to give a sugarcoated answer and say, "it depends on your definition of 'normal'."  But that's a bit of a cop-out.  We all know exactly what this person meant by "normal."  We know what he or she was really asking.  It's the same thing we were all afraid to ask, back after our own "D" days.*

Still.  The answer is yes, at least for some people with Fragile X.  Some people are very mildly affected.  I hear all the time about people who find out later in life that they have a full mutation, and they've been living perfectly normally.

Right now, today, though, I'd have to say for a lot of people with Fragile X - knowing what you really mean by normal - the answer is no.  I'm not going to tiptoe around it.  And I can't give you details about the kinds of normal things a person with Fragile X might or might not be able to do, because just like all people, every person with Fragile X is different.  But if I was going to go with the majority of people with the full mutation of Fragile X - and what you probably consider to be normal - the answer has to be no.

There are probably quite a few parents of kids with Fragile X, who are good friends of mine, who won't like that I said that and who would argue with me.  I don't like that I said it.  But if I'm going to be completely honest here, where we are now is a long, long way from where I imagined we'd be, once we had kids.

Now what you have to realize is, just because it isn't a "normal" life doesn't mean it isn't a good life.  Normal doesn't equal happy.  That won't alleviate the disappointment that comes with a diagnosis that rips the "normal" rug out from under you.  But little by little, day by day, you'll come to realize that "normal" isn't all it's cracked up to be, anyway.

And here is what we have to hang onto - Hope. 

Look at all the clinical research trials going on here.  We are actually very lucky.  Lucky to have a genetic disorder that is so interesting to so many brilliant scientists and physicians. 

It's not a mystery.  Researchers have pinpointed exactly what the FMRP gene does to mess up brain and nervous system development.  Right now, they are now banging on the door of effective treatments, and even a cure.  And someday, maybe soon, that door is going to open.

And then, maybe, we will all be able to answer that question with "Sure.  Everything is going to be fine."

*D stands for diagnosis.

Whoops, we left the bubbles outside in the snowstorm.  I hope they still work after they thaw out.

Flying to the MIND

Not long after getting the diagnosis of Fragile X Syndrome, we learned about the MIND Institute at the University of California in Davis. It's where the greatest medical, scientific, and research minds all come together to work constantly and tirelessly on better treatments, earlier diagnoses, and ultimately a cure for all the Fragile X disorders.

It's where the Hagermanns live and work. They are a husband and wife team who've dedicated their lives, professional and personal, to researching Fragile X and making the lives of our kids better.

The Hagermanns are major celebrities in our world. They are featured prominently at every conference. Mark and I saw them at Subway, across the street from the hotel where the last conference was in Detroit, and I was too intimidated to approach them. I mean, they were trying to have a lunch break. They didn't need to be accosted by fans.

So anyway, when I found out that the head researcher in charge of the study that AJ and I took part in last year at the Waisman Center was moving to the MIND Institute, I was actually less than thrilled. It's a lot harder to bring AJ to California than it was to Wisconsin.

I'm getting excited, though. I mean, the MIND is such a famous and revered place in the Fragile X world. It's our Mecca. It's the Fragile X holy land. And I finally get to see it.

AJ is not that excited.  He's, predictably, nervous.  He and I had a conversation this morning that went like this:

Me:  AJ, you and I are going to go to the airport today, and go on an airplane!

AJ:  No.

Me:  Yes, we are!  We're going to fly through the sky on an airplane and go to California!

AJ:  No.

Me:  And then, we're going to stay at a hotel!

AJ:  Yeah......

Me:  And tomorrow, we'll go over to the school and play and work with the ladies there!

AJ:  No.

Me:  Yes, and after that?  We're going to go back to the hotel and go swimming!

AJ:  Yes.

So he's good with the hotel and the swimming, but nothing else.

He'll be stressed, but he'll be okay.  I just hope and pray that the flight isn't delayed, and actually is miraculously shorter than it's supposed to be.  Because 4 hours on an airplane is a really long time to ask AJ to be good.....

STX209 Update: 7 Weeks and 4 Days

Well, we've been both home and healthy now, for almost a whole week.  Finally, we've been able to stay in a routine for a few days, and we are noticing the boys are calmer and happier.

I can't decide whether to attribute that to the return to a predictable routine, or the trial medication.

I'm trying not to see this through rose-colored glasses.  I'm trying to be realistic.

Zack is definitely calmer though, in the last week.  He bounces a little bit less.  He sits and lays down more.  And not because he has a fever.

And he talks much more.  Both of them do.

I was demonstrating to my parents and to one of our therapists how both boys can read the TV screen, when I bring up the menu of our DVR recorded Little Einstein episodes.  I'll highlight one and ask

"What's this one?"

And both boys can tell me.

"Halloween."

For awhile, neither of them would say what the episode was, unless I asked them to.  But this morning both of them were watching me scroll through, shouting out which ones they wanted to see. 

"Sleeping Bassoon!"
"Good Knight Bad Knight!"
"Glass Slipper Ball!"
"Jump for Joey!"

Typically for twins and siblings, they could not agree on one.  But it was astonishing, to hear them shouting out words, trying to drown each other out!

The past couple of days AJ has been so happy.  He just smiles all the time, and chatters to himself.

I don't know.  Some of that might be a result of STX209.

But I'm still waiting for that "wow" moment.  The moment when one of them does something that is so stunning, we all stop and stare, jaws dropping to the floor.  The OMG moment.  Where we won't wonder if we are wearing rose-colored glasses.  We will know this stuff is magic.

I'm pretty sure we're on the placebo.

We had our third clinic visit this past Monday and four weeks into the trial, we still don't see many changes.  They are both talking a little bit more, but there are still huge anxiety issues with both boys.  And when we told the doctor that, she said well, maybe they are on the placebo, or a very low dose.

Which made me think that SHE expected to see some changes by now, too.

We have the last two appointments all scheduled, the last of which is in mid-December, and she said that then we can get them into the extention and then we'll KNOW they are on the drug and we can see what dosage will work for them.

Which makes me think she wants us to definitely do the extension.

This is Dr. Elizabeth Berry-Kravis, by the way, a world-renowned Fragile X pediatric neurologist, and a superstar in the Fragile X community.  If she wants us to try the extension, we are going to try the extension.

If she told me it might help for me to jump through a hoop of fire, I'd probably try it.

We have a nice long break now before our next clinic visit.  We don't have to go back to Chicago for a month.  So we'll spend this month trying to stay in a comfortable, predictable, routine of school, therapy, Little Einsteins, and occasional trips to the mall and Target.  We'll try to keep the anxiety level as low as possible.

We'll keep taking our trial meds, and we'll keep hoping for great things.

This past weekend in Chicago we tried to make it into a family mini-vacation.

We decided a couple of weeks ago that we wanted to take the kids to the Shedd Aquarium.  I emailed them and explained why we were going to be in town, told them about Fragile X and autism and how it affects the boys, and asked if they had any ideas or suggestions of ways we could make this a successful, fun outing for the kids.  Their reply was basically a form email they send to anyone who asks about how to make a trip to the Shedd successful and fun.  I was kind of disappointed in that.

But we got there around 20 minutes before it opened, and were the third family in line.  By the time it opened, there were probably 10 families in line behind us.

Well, I waited in line, while Mark and the kids bounced, skipped, jumped, and ran around in circles.

"We know it cost $147 for all of us to come in here, but we're tired of the aquarium, can we go back to the hotel and watch videos now?

And the Shedd Aquarium was a very positive experience for all of us.  For the first hour or so it wasn't crowded at all, so we could kind of let the boys run around and play on benches and even lay on the floor a little, if they wanted to.  They even showed some interest in some of the exhibits.  AJ and Aliza watched the Alligator snapping turtle with awe.  Heck, so did I.

I didn't take this one - it's from here.

Being regulars at the Minnesota Zoo, we are well acquainted with dolphins but we aren't used to seeing Belugas, and thought they were fascinating.

We stopped for lunch and played with the iPad, and then we took a big leap out of our comfort zone, and took the kids to see "Dora and Diego's 4D Adventure Catch that Robot Butterfly!"

You know what 4D is, right?  It means you will feel and smell the movie as well as having it appear to jump off the screen and into your lap.

We could smell the rainforest.  The chairs rumbled and we got wet and windblown.  It was all a bit much for AJ and he started to cry just a few minutes into the show, so he and I left and waited outside for the others.

It was one too many "D"s for him, I guess.

After we left the aquarium it occurred to me that the biggest and greatest American Girl store in the whole world is in downtown Chicago, just a couple of miles from where we were at that very moment.  I couldn't resist it.  I talked Mark into letting Aliza and I spend a little time there.

She floated through that store on a cloud.  Number nine, I think.

Then later in the afternoon we took the kids back to the hotel pool, where they just so happen to have a couple of flatscreen TVs mounted on the wall, that just so happened to have the Vikings/Packers football game on them.  There was no one else at the pool.  So for a little while, I got to kick back in the jacuzzi and watch football.  Mark said "don't get used to this."

I said, "Too late.  I'm used to it."

I'm pricing jacuzzis on the internet right now.

Our Ongoing Travels

We're baaaaaaaaaaaack ...........

in Chicago.  For another check up for the drug trial.

This time Aliza came along.







Racing







A Hilton miracle has occurred.  Both boys were asleep, in a hotel room bed, before 8 PM.  They are becoming seasoned little travelers!

I spent some of the drive thinking about what I'd tell them, when they ask whether we are seeing changes in the boys' behavior or anything yet.  I will have to say no, not really.  A few little things, but nothing really amazing.

If anything they are still showing more signs of stress and anxiety than they were 6 months or a year ago.  AJ bit me a few times on the arm this week.  I haven't had bruises from bites from these boys since they were around 4 years old.  I dressed them alike today, and by noon AJ had to change shirts because he'd chewed and sucked on the sleeve, soaking it right up to his shoulder.

They know, by now, what happens on these trips.  Lots of fun will be had, but at some point we're going to have to visit the doctor and have their arms poked, and be otherwise prodded and manhandled by scary grown ups in white coats.  They know.

Still hoping and praying and crossing my fingers and toes that something really good comes of this.  That all the stress and anxiety of these trips is totally worth it in the end.  I know that whether or not it helps Zack and AJ, our participation helps get this drug approved and out on the market, where everyone can try it, and people with Fragile X everywhere can live much more fulfilling, social lives because of it.

But I'd sure love for us to be one of the ones who benefits from it.

Not Loving Chicago

I love how everyone says "oh, I just LOVE Chicago" when I tell them we've been spending a lot of time there.

I guess to LOVE it, you have to see more than the traffic on the expressway, parking lots, hotel rooms, and the medical center.

You also probably have to not travel with two small children with autism.  It's hard to enjoy your trip when you are constantly hyper-aware of your two little ones and the dangers all around, that they are completely oblivious to.

The level of hyper-vigilance we have to have with the boys is stressful and exhausting in a way I don't think many people get.  I keep thinking about that family in California that was in the news a few weeks ago, whose 8-year-old autistic son was lost in the woods.  (I wrote about it here.)  He'd been in the care of a foster parent or something (who obviously didn't watch him closely enough and lost him), having been taken away from his parents because they'd tied him to a post in their front yard.  They did that because they found themselves facing foreclosure and having to move out of their house quickly, and they had no one to watch their son.

I think I know exactly what they were thinking.  That child required the contant, focused attention of one person, 24/7.  The person watching him could not also pack and move things out of the house.  One entire person had to be 100% watching him and doing nothing else.

They wanted to keep him in the yard, where he could watch them coming and going from the car, and where they could see him.  Where he wasn't secluded or isolated, but was safe. 

Would it have been okay with Child Protective Services if they'd barricaded him in his bedroom, instead?

My boys require that same level of supervision.  I completely understand what would drive you to tie the child to something, just so you could have both hands free to do something else.  Let me tell you about the last time I thought about tying up one of the boys.

At the hotel we took the boys down to the lobby for the continental breakfast.  It wasn't that busy, but neither of them would sit.  My dad held onto AJ while I struggled to get Zack to stay at least next to our table.  He laid on the floor.  The breakfast was great - bagels, muffins, donuts, scrambled eggs, sausage, coffee, juice, and milk.  Some cereal.  The only thing there either boy might have eaten is the Fruit Loops, but under these stressful circumstances, in a strange place full of strangers, there was little hope of either of them eating anything.

Incidentally, we don't bring them there to eat.  We bring them there to try to get them used to being in a situation of eating in public.  We bring them, because they won't learn how to sit down in a restaurant and behave properly, if we keep isolating them.

But it's hard to eat when you never have more than one hand free.  AJ's decided he can sit, sort of, if he sits on my lap and I hold him there.  I can't butter my bagel.  Eggs keep falling off my fork because of AJ's struggling to get loose.  I have to time sips of coffee carefully to avoid sloshing it all over myself.

So maybe you can see why, in that hotel lobby, I briefly thought about how nice it would be if I could tie AJ to the chair next to me just for a few seconds, so I could let go of him and butter my bagel.

When we walk out to the car, I have to step up the supervision level because if I'm carrying things and maybe not holding both boys hands, they are just as likely to skip off in a different direction as they are to run toward the car.  Imagine walking out to your car in a crowded, busy parking lot with two 2-year-olds.  It would be nerve wracking, trying to keep them safe.  My two still have the unpredictability and impulsivity of 2-year-olds, only they are faster.

So maybe you can see why I breathe a little sigh of relief, when I can strap them both down in the carseats.  They can't get up and run off and I can look the other way without worrying about what they are doing.

During the course of this last trip, AJ mouthed and chewed on things (his shirt, his blanket, a pillow) so much he'd developed sores on both sides of his mouth.  One side looks infected.  I put Carmex on his lips all weekend, but he's kind of a mess.  Zack has been rubbing the collar of his shirt across his bottom lip so much that it bled.

At a rest area/oasis along the highway.  Chewing, chewing, always chewing....

Fighting over the computer in the hotel room.

No, we are not seeing a reduction of the anxiety behaviors yet.

Driving is nice because I know the boys are safely belted in and can't get into too much trouble, but driving 8 hours is also quite a drain, so by the time we get back home, it takes a couple of days before I can even begin to think about planning the next trip to Chicago.  Maybe after this weekend, I can begin to think about it.

And maybe on the next trip. we'll try to see something besides the hotel and the medical center, and we might develop an appreciation of the sites in Chicago.  As of right now, though, I don't LOVE Chicago.  I don't even really like it.

Live from Chicago, starring the iPad!

I was going to be that super cool blogger who blogs from anywhere because I'm so totally mobile now, with my new iPad, but I couldn't figure out how to do it, so my techy-self-esteem imploded and I'm on my parents' computer instead.  I could get to Blogger and type up a post but nothing happened when I clicked "Publish", or "Save."  It didn't publish or save.  I don't know, maybe iPad isn't compatible with Blogger?

Anywho...

We did finally get the iPad, and the kids all love it.  And by kids I mean the three of them and me.  Mark hasn't had gotten too close to it yet, he hasn't been aggressive enough.  At the rate the other four of us are fighting over it, he's going to have to get tough or get used to waiting.  Aliza loves Angry Birds, Drawing Book, and the Real Piano HD; the boys love Super Why and PBS Kids;  I also love Angry Birds, but along with that, the Twitter and Facebook apps.  Yeah, my social networking apps get me through the day.

I downloaded a bunch of free apps for the boys, including ABA Flashcards Emotions, Animals, ABCs, and Actions.  They are only slightly interested in that.  I also got SeeTouchLearn, but I'm trying to figure out how to set it up with the cards it came with for free, before I buy any.

It is so wonderful to watch them play with it and love it, though.  AJ was putting puzzles together on it this afternoon.  Not baby puzzles with like 5 huge wooden pieces that fit in so obvious empty spots on a wooden board.  Big kid puzzles, with like 6 pieces.  Now I had to do the first couple of pieces, but he did most of it himself!

I have been told that iCommunicate is a good app, but I see it's $49.99, so I'm might get that for them and call it a Christmas present.  After someone can show it to me and convince me it'll be good.

We are in the midst of our second trip to Chicago for the STX209 trial.  We are going to be seasoned, experienced travellers before too much longer.  We have been swimming a lot and watching a ton of Little Einsteins.  I wish they'd make more of them, there are only like 45 different episodes and I've got them all memorized.

So what apps do your kids with autism love the best?  I need suggestions....

The Drug Trial - Your Questions Answered

I get a lot of questions about the STX209 drug trial, so I'm going to use this platform to try and answer them all.

First off, if you want to read more about the trial itself, the whos, whats, wheres, whens, and hows, you can go to http://www.clinicaltrials.gov/, and search for STX209.

And on a side note, let me just comment on how much the above sentence sucked to type, on a keyboard where the "h" doesn't work.  Feel my pain.

1) Do you have to stay in Chicago while the boys take the medicine, or can you go home?

We can go home.  This trial involves 5 trips to Chicago in 4 months, which is easily the most challenging part of it.  Eight hours in the car, one way.  No matter which way we go, it's a full day in the car.  I figure it'll get easier, every time we do it, but it's definitely the hardest part.

2) How long will the boys be taking the meds for the trial?

It looks like it'll go until mid-December.  We don't know if they are on the drug or the placebo.  The doctors don't know either - as they put it, only the computer knows, right now.  At the end, in December, we'll find out whether they were on the actual trial medication, or the placebo, or some combination, resulting in either a high, medium, or low dose.  At that point, depending on what kind of results we saw, we can decide whether we want to continue the study and apply for an extension.

3) Do you have to log their behavior after each dose?
 I don't specifically have to keep a log, no.  They will ask me for updates regularly on how it's going, but they didn't give me any idea what kinds of changes to look for.  I suppose they didn't want to put ideas in my head, to keep me as objective as possible, but I already know somewhat what kinds of behavior changes we could see, because I've talked to people whose children have been in earlier phases of this same study.

4)  how did the boys do with the evaluation?

They did pretty well.  The blood draw was painful, figuratively and literally, just as I imagined it would be, but I bet there's not a drug trial in the world that doesn't require some blood draws.  Zack screamed, AJ sobbed, and I managed not to do either of those things.

The EKG I was super worried about and it was really easy - Zack went first, because AJ always wants Zack to go first with everything - and Zack doesn't mind - and he just watched, curiously, as she stuck the monitors on his chest, arms, and legs.  AJ watched as well, and then came over and stuck his arm out.  he was ready for his stickers too!

The urine sample was the part I was most worried about, actually.  They aren't even remotely potty trained.  If anything, they are negatively potty trained -- they'll hold it and wait for the pull up to pee, rather than pee without it.  So my mom, back in the day, used to be a pediatric nurse.  And do you know how they get urine samples from infants?  They put a specially shaped bag over the baby's "thing" and then just wait for nature to take its course.  And that, my friends, is exactly how we got a urine sample from AJ and Zack.  It was so simple.

5) how do the boys swallow the pills?

I bury it in a spoonful of applesauce and they gulp it right down.  I'm pretty sure they know it's in there, but most of the time they are cooperative.

6) When do you think you'll start to see some changes?

It's hard to say.  I do think this med takes some time to get into a person's system and start to take effect.  Since they started on Monday, I had it in my head not to even think about it until Friday.  Now that it's Friday, I'm thinking I'm going to try to hold off expecting anything until Monday.  But I also know, it might be a couple or few weeks.


I have to get back to fighting with the good computer now.  You know, the one that won't start up.  have a wonderful day!

STX209 -

It feels like it's been forever since I had time to post here!   And so much has happened!

(BTW, the boys finally succeeded in completely killing our "good" computer.  So today I'm on the computer where the "h" doesn't work.  So if you see "te" here and there, it's because I missed pasting an "h" there.  I can't tell you how much fun it is to have to type Crtl+v instead of"h" over and over and over.)

We did it!  Finally.  We drove to Chicago, visited Rush University, and started the STX209 clinical drug trial!

We have been wanting to get involved with this trial mainly because it's been shown to help people with Fragile X with social anxiety.  In other words, it might help them tolerate a cafeteria.  Or a school playground.  Or a busy doctor's waiting room.  Or just, regular life.h

Well, that and the fact that I like helping out with a drug trial that will help kids and grown ups with Fragile X.  I like the idea that my boys are helping further the research, helping make sure this gets through the FDA approval.

I have to say, after anticipating this all summer, giving them that first dose was pretty exciting.  Every dose after that one has been exciting.  Now, there's a lot of different possible scenarios here -- they get three doses a day and could be getting one of several different combinations of different dosages of the trial med, or the placebo.

I'm not sure what we are expecting.  While I have hopes it'll be a kind of "awakening" for them, I'm trying not to assign too many expectations here, partly because I'm not supposed to-- I'm supposed to try and be as impartial and objective as possible -- and partly because I just don't want to be disappointed.  I mean, there's still no miracle cure here.  They will always be two boys with Fragile X.  This isn't going to eradicate their "special needs" status.

I know too, that it could take awhile for the affects of the med to start being noticeable.

But we are watching them closely for signs.  Are they getting the actual medication, or the placebo?  On the first night on the medication, our second night in the hotel in Chicago, Zack had a hard time falling asleep.  He got himself all worked up into a little snit.  He screamed and threw pillows on the floor and kicked them.  Then he put them back on the the bed, staring at me through tears, saying "good boy."  Then he'd throw them all on the floor again.  AJ just watched him in a daze.  They were both sooooo tired.

"Well, I guess Zack's on the placebo," my dad decided.

What?  You think we should give it more time??

San Diego is the most awesome place to have a meeting

As I mentioned in this post that was mostly pictures, this past week I had the amazing opportunity to attend one of the Fragile X Patient Advocacy Advisory Board Meetings with Seaside Therapeutics. 

They held meetings in Philadelphia and in San Diego and I got to go to the one in San Diego because that's the side of the country Minnesota landed on, and because God knew that that way I'd get a chance to see my cousin who lives in San Diego, who I haven't seen in 10 years.

A representative from each of the local Fragile X groups, called the LINKS groups, was invited to attend.  At the meetings we brainstormed for ideas about how to increase awareness of clinical drug trials, and get more people involved in the trials.  We also chatted each other up about how to reach the less active community members and make sure they are supported and have the resources they need.

Oh, and I was treated like a VIP.

I was escorted from the airport by someone who insisted on pulling my luggage for me and loading it into the LIMO (not a stretch one or anything, but still...) and then I was driven to the hotel in style, views of the San Diego Bay on the right and city skyline on the left.   I don't mind telling you I totally enjoyed that.   I would make an excellent super-rich celebrity. 

All that was missing was autograph requests.

View from my hotel window.

Another view from hotel window.

The meetings were spellbinding.  Have you ever gone to a movie that was so good, you were afraid to go to the bathroom because you didn't want to miss a crucial part of the plot?

I was afraid to leave to go to the bathroom during these meetings.

I learned a lot about the clinical drug trial we're going to take part in. I thought I knew a lot, but I learned more. Some of the information I got gives me pause, but none of it makes me not want to do the drug trial. Many of the people there had children already taking the trial medication and they had riveting stories to tell of how their children have responded to it.  Stories about how their children acted ... like regular kids on this medication.

While they were describing the totally typical, ordinary things their kids are now able to do on this trial medication, things that are like miracles, things we all never thought our kids would do, all I could think was, so when my boys are on it, I can expect to burst into tears of joy at least once a day.

I can't wait.

I met such incredible people from around the country.  I met Pat from Seattle, who has six children, three with Fragile X, and who just found out she has FXTAS (an adult onset neurodegenerative disorder).

I met Kelly from Omaha, who has an older son with Fragile X and a younger one who is unaffected because she used an egg donor.

I met Elizabeth from New Mexico, who says she has a very small local Fragile X group.  It consists only of her own family members.  She doesn't bother to have Fragile X gatherings anymore, because they "already see each other at Thanksgiving."

I met Rose from Wisconsin.  Jen from Indiana.  Mary from Montana.  Donna from Kansas.  Laurie from Houston.  And Missy and Holly from Illinois (well, I already knew Holly!). 

All of us Fragile X family members, plucked from various parts of the country, brought together to represent our hometown and state Fragile X communities, honored and blessed and celebrated.

After the meeting I got to meet up with my darling cousin Andrea.  (She's from the non-Fragile X side of the family.)  Without going into too much detail as I know she wouldn't want me to, she needs a weekend of pampering much more than I did.  More than anyone else I know, offhand.  She takes care of a lot of people.  Some of them are people who should be taking care of her. 

We haven't really known each other since we were kids.  And growing up has changed us.  While there are undertones of stress and drama and serious grown-up stuff, she is still definitely the kid I knew and loved.

I'd post the picture of the two of us, but we let her daughter take it, and let me just say this; when a child takes a picture of you, it's not going to be from the best angle.  All I can see are double chins.  And other double things.  Definitely only let tall people take pictures of you.

I hope and pray one day soon she's able to get a weekend away to just play.

You stay classy, San Diego

I am outrageously fortunate.

I mean it's ridiculous, that I got to come to San Diego, stay in a gorgeous hotel, meet and get to know a bunch of other Fragile X moms and dad and grandparents, and gain and share information from Seaside Therapeutics, a company that is working to improve the lives of people with autism, Fragile X, and other neurological disorders.

Did I mention it's gorgeous in San Diego?  For about the first 24 hours I was here I couldn't wipe the silly, tickled grin off my face.  I can't even wrap my head around the fact that I got to stay in a place where palm trees just grow right in the ground.

Okay I've been in places where palm trees grow right in the ground before.  I've been to Texas a few (dozen) times, and I've been to Mexico and the Dominican Republic.  They were all exotic vacation paradises.

So I guess, palm trees signify exotic vacation paradises to me.  I'm sure it's orchestrated that way.  They plant the palms all over the hotel landscapes and along the highways to and from the airport, so those of us from colder climates will feel like we're in paradise.  I'm sure it's a conspiracy.

It worked on me.

Ditto for giant cacti.  They make a good icon for exotic paradises too.

There are more pictures and plenty more to say, but right now I have to close and get packed up. 

To be continued.....

At the Waisman Center

A small miracle occurred this past weekend during our trip to Madison.  We all got along pretty well.  Nobody fought, nobody hurled, there was minimal crying, very little bleeding and only one black eye.

I love bringing the boys to the Waisman Center.  We are a special family everywhere we go, but not always special and different in a good way.  At the Waisman, we are very unique and special and honored for our differences.  And it's nice to feel honored, a little.  It's nice to feel that those differences make us great.

When we got there, we practically leapt out of the van and straight into the hotel pool.  Zack and AJ were very excited to go "wimming!"

AJ has grown gills, apparently, because he keeps dunking his head under water, on purpose.  Which really freaked me out the first few dozen times he did it.  It took several attempts but I finally got a little video of him doing it, at least for a second or two.

Both Zack and AJ were superb little workers at the Waisman. They both cooperated beautifully with the researchers and even seemed to enjoy it. One of the researchers told me she thought they both seemed so socially oriented. They both loved the attention. It helped that the tests they performed were formatted so much like the ABA therapy we have at home for 6 hours a day. The idea of "perform this action, get this reinforcer" is pretty basic for them at this point.
One of the things they had to do watch a couple of simple movies. All they had to do was sit and watch. Pretty easy, right? Except that no, it wasn't one of our Big Three (Dora, Diego, or The Wiggles), so the guys were not all that interested. They managed to get through them, though. It was just pictures and then a sentence that applied to one of the pictures - like maybe it would be a cat chasing a mouse, and a cat kissing a mouse, and the sentence would be "The cat chases the mouse" and then the hope is that the kid would look over at the picture of the cat chasing the mouse. They tracked the eye movements of the boys as they watched the movies. I thought it was fascinating. It is supposed to show their comprehension of sentences without actually asking them to indicate anything purposefully. It couldn't be less invasive. All they have to do is sit there and watch!

It was really interesting to watch.  Both little guys cooperated with every single activity.

On our way home we passed the capitol of Wisconsin, and then a few hours later passed through St. Paul and saw the Minnesota capitol.  Aliza was delighted to see two state capitols in one day.

Mark was pretty excited to get to see Camp Randall.  The boys were frustrated because they were not allowed to actually run around on the field.  I'm pretty sure at the moment we took this picture, the twin who is not pictured was trying to break through the "Emergency Only" door.  They wanted to get out on that open field badly.

The best part, though, had to have been watching the boys snuggle and settle down to sleep together.  They don't sleep in the same room, much less the same bed at home, and I loved getting to see them unwind together, watching Dora and slowly falling asleep.

Good night, Madison.