Saturday, July 03, 2010

The Fragile X Conference Anticipated

It's July now.  The conference is less than three weeks away.  It's making me think about my boys, and the differences in our lives now versus two years ago, when I went to my first conference.  Some good, some not so good, but just about any change is progress.  At least that's how I'm going to see it.
  • The boys were three then; now they are five (I know you could probably do that math yourself). 
  • Then they were very much succeeding in preschool; now we are nervously anticipating kindergarten.
  • Then they were drinking from bottles and wearing diapers and it was just fine because three-year-olds are, in a lot of ways, still babies; now AJ drinks from a sippy cup but Zack stubbornly holds onto the bottle, and both are still in diapers.  You might remember my post last month about the potty training debacle.  If not, here it is.
  • There was no talking then at all, they were completely and utterly nonverbal; now they both have a grasp on some useful words and are gaining more every day.
  • Then, AJ would bang his head on his crib and headboard until he was bruised and bloody; now, Zack whacks his head on the wall or on his bed headboard, though thankfully not as violently as his brother used to.
  • Then, they really had baby faces, probably partly due to their cognitive delays.  They may have been three years old but they had the abilities and emotions of 18 month olds.  Now, little-boy faces have replaced the baby features, but the expressions are still very toddler-like.  Now roughly once a day I look at them from across the room and for just a second I'm startled by how large they are.  Taller than some of their sister's seven-year-old friends.
  • Then, they watched video after video after video.  It's all they did for entertainment -- bounce around in front of the TV watching a video.  Now we can sometimes get away from the TV and do things like puzzles, fun folders, and reading books.  Lots and lots of books!
  • Then, neither of them would have anything to do with other kids.  Now they both have socialized with other kids, both special needs and typical, in their preschool.  And at home, AJ shows clear and strong preference for being where kids are; if Aliza is outside with two of three of her little friends, AJ screams at the back door until I let him go out.  Zack isn't quite as delighted by other kids, but he's not antisocial, either.  He wants to be where people are.  If we are all outside, he wants to be outside with us. 
  • Then, they subsisted mostly on cereal; now.......well, not everything is different!
One other thing that is different - I'm much more aware of the differences between them and other kids their age.  It's much more apparent at age five than it was at age three.  At three, it's perfectly acceptable to love Dora the Explorer.  A lot of three-year-olds love Dora.  By five, boys are more into Legos and Star Wars.

My five-year-old boys are into The Wiggles.

That is one reason this conference is such a blessing for moms like me.  To be surrounded, for a few days, by parents of kids just like mine ... it's almost an indescribable treasure.  I expend so much energy explaining my kids to others, or deciding whether it's even worth explaining.  I don't have to explain anything to anyone, there.

I also love seeing all the top Fragile X research brass; for me it's like being in Hollywood.  I remember once at the last conference I found myself in the same elevator as Katie Clapp.  I nearly died, I couldn't say a word, it might as well have been George Clooney.  It's a little silly but these people mean so much to me and the whole Fragile X community, I'm giddy with excitement at seeing them again and maybe even having a chance to talk to them!

1 comment:

Kim and Steve said...

I'm so happy that you get a break like this! Enjoy it!


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