Showing posts with label Fragile X carriers. Show all posts
Showing posts with label Fragile X carriers. Show all posts

Monday, August 20, 2012

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.

Saturday, May 14, 2011

Carriers have trouble with math.....or just a Type A personality?

Every day when the boys and I pick Aliza up from school, I ask her three things.

"How was your day?"
"Did you learn anything?"
"Did you make any new friends?"

She usually responds with "fine."  "no."  "no."  That's just our routine, I guess.

So on Wednesday of this week we picked her up, I asked her those three questions, and she responded as usual.  Then she told me that a friend of hers had thrown up at school and had to take a nap in the nurse's office.  I asked her how she knew that and she said she'd seen her, laying on the cot in the nurse's office.

It didn't occur to me at the time to ask what Aliza was doing in the nurse's office, probably because I was maneuvering our way out of the school parking lot, dodging kids, parents, and cars, while watching the crossing guards and keeping half an eye on the boys in the back of the car.

When we got home Aliza went straight upstairs to unwind with a little iCarly, and I noticed a message on the machine.  It was from her teacher.

Apparently that afternoon, during math, Aliza had burst into tears, claimed she was very tired, and needed to go lay down.  Her teacher was really concerned because it was way out of character for her to suddenly fall apart in class like that.  She said that Aliza said she'd actually felt very tired, in the afternoons, a couple of times that week.  She wondered if anything else was going on that I knew of.

I got the boys settled with a Dora video and some cereal, so they'd be okay for a few minutes alone so I could go up and talk to Aliza.


"I don't know what 9 times 9 is." was Aliza's response, when I asked her what happened at school that day.

Evidently, they'd just had a timed multiplication test and she'd performed poorly.  She got only 14 out of 50, and she was really worried because next week they will have another timed test just like that, that will go on her report card.

The very first problem on the timed test was 9 times 9, and when she didn't know that one, she couldn't bring herself to move on very well.  She did, because she managed to answer 14 of them correctly, but she tortured herself over that first problem.

Sometimes I think it might be easier if I didn't know so much.  I know she's a carrier of the Fragile X gene and I'm always watching her for the signs of problems that carriers can have.  I know that carriers often have trouble with math (I certainly did, and do).  Every time she's doing math homework and has trouble with something, that's immediately where my thoughts go.

When if I stopped and looked at the whole forest and not each individual tree, I'd remember that she really is very good at math.

Of course if I didn't know about her being a carrier, I'd still think she got the "bad math" gene from me, because I always struggled with it.

So is it just her perfectionist personality?  And what can I do about that?  She certainly doesn't get that from me.

This is how I feel about math.

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