She Says the Darndest Things

Remember that show "Kids Say the Darndest Things" with Art Linkletter, where he'd interview kids and they'd all say outrageous, hilarious things?  The best was when they'd say something that you knew had to embarrass their parents.

If you don't remember it, it's because that show is from back when there was no color in the world and everything was in black and white and tones of gray, as evidenced by the black and white pictures and movies and TV shows.  You know what I'm talking about.

Sometimes I email funny stories about the kids to my mom, and she in turn sends them in to the editor of the Bulletin Board column in the St. Paul Pioneer Press.  Bulletin Board is a collection of random human interest stories, sent in by readers.  Both these stories about Aliza recently made it into print.

A couple of weeks ago I was putting away clothes, and I brought a pile into Aliza's room for her to put away.  I take them out of her room, wash, dry, and sort.  All she has to do is hang them up or stuff them into a drawer.  I really don't think I'm overworking her here, but feel free to disagree.

I went in a few minutes later to check on her progress and she is only on her second or third shirt, sighing heavily.  "It's like yesterday was my last day as a kid," she declares.

"Why is that?"  I ask, I must admit unsympathetically.
"Because I'm having to hang up my own clothes."

At NASA, last June.

The second story occurred just about a week ago.  Aliza and I were headed out to the American Girl Bistro for dinner, just her and I.  It wouldn't have been my first choice, but I let her pick.  I was intending to tell her about her premutation carrier status.  I found out actually a couple of years back that she is a carrier of the Fragile X gene, but I hadn't told her yet.  I took some time to deal with that this meant for her future, and at the International Fragile X Conference last month, I decided I really needed to have this talk with her.  She is old enough to understand and I was beginning to feel like I was keeping something from her.

So I planned for a mother-daughter dinner, and allowed her to pick her favorite restaurant.  She likes the American Girl Bistro because you can bring your doll along and she sits at the table and has a tiny, doll-sized meal and drink and dessert right along with you.  It's adorable.

Anyway we left the house distractly, and realized halfway to the Mall of America that we had forgotten to bring along one of her dolls.  She looked like she was going to have a breakdown.  I did an internal eye roll.  Oh good grief.  Was this going to overshadow our whole meal and chat?

Then I remembered something.  "You know, you can borrow a doll there, to sit at the table and have dinner with us."

It's true.  They have a whole shelf full of dolls in little pink highchairs that you can pick from.

Aliza looked doubtful.  "Well, it'll be weird, having dinner with a doll I don't know," she replied.

So she and I took a stranger doll out for a blind date.

And our talk, about her carrier status?  Completely uneventful.  It was literally about 90 seconds of our whole hour and a half dinner conversation.  She wanted to know what it meant, and I told her that right now really, it didn't mean anything.  I told her when she's older it could mean that she'd have kids with Fragile X too.  And she shrugged her shoulders at that.  I am raising a child who, so far, thinks that having a kid with Fragile X is not a big deal.

Going to have to think about that one.

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.