Monday, January 04, 2010

Update, Recap, and some more of the same old, same old

Starting 2010 with a new blog and a new initiative to write in it often!  Actually as you may notice from the archives, this is an old blog that I ignored for a few years, and picked back up when I couldn't revise and change around my wordpress.com blog as much as I wanted to.  The wordpress one is http://www.bonnieandco.wordpress.com/.

For those who are new, here's the scoop.  Our two boys, AJ & Zack, have Fragile X Syndrome.  That is about all you need to know, in order to know what rules our lives.  To find out more about how they were diagnosed, tune in to http://www.kormanonline.com/.  To find out just what Fragile X is, tune in to http://www.fraxa.org/.  If all that clicking is just too much effort for right now, I understand, and I won't pressure you or give you a hard time.

Right now the boys have a pretty strict schedule of ABA therapy, lunch, school, ABA therapy, dinner, and bed.  On Fridays they get a bit of free time as they don't have school.  But otherwise, 6 days a week, they work pretty hard learning how to sit down and gather some study and life skills.  They are nonverbal, but are slowing gaining words and sounds.  AJ speaks just a bit more than Zack does.  AJ says "fish", "hi", "bye", "d'oh" for no, and simple things like that.  Zack says "up" clearly, that is about it.  He used to sort of say a drawn out "by--eee" but he doesn't now, he just waves  Talking seems harder for him, it seems to be a lot of effort for him to get a defined sound out.

Currently their favorite activity is watching Dora the Explorer or The Wonder Pets or The Wiggles, from a high vantage point like the top of the bookshelves that are on top of our upright piano.  Heads bumping on the ceiling.  So we are working to curb that habit, because sometimes they don't climb all the way up, they just stand on the keys and jump, which is hard on the piano and my ears.  Gerber oatmeal is one of the 6 things AJ will eat, and he thinks he needs it every meal for every day.  Zack is my little hero because while he is nearly as picky as his brother, he'll eat almost any breaded chicken nugget.  AJ refuses any chicken that is not a McDonald's chicken mcnugget.  I've tried saving the McDonald's chicken boxes and putting other chicken nuggets in there, and he knows.  He studies them carefully, turns them over and over in his fingers, and puts them back.

Aliza is a 1st grader and she's the tallest one in the whole grade.  She's going to be 7 in less than 3 weeks now, and I'm thinking of having a karaoke party.  Sounds fun for a gang of 7 year olds, right?  I'll rent or borrow a karaoke machine (is it ka-ro-kee or kare-a-o-kee?), and find some music online hopefully, and have all the girls take turns singing their favorite Disney, Hannah Montana, and whatever else I can find.  I found a neat craft idea where they could make microphones, which I'm thinking, will come in handy when they dance around and pretend to sing.

Mark labels himself as "job challenged" at the moment, he's hunting for work.  We expect that 2010 will be better for him in that regard.  2009 was not a good time, for the most part.  2008 wasn't that great either, come to think of it.  We are past due for a great year.

I am working on finishing up my 2nd term as Newsletter Editor for the Mothers of Multiples club, and am volunteering with ARC on their committee to plan the Dakota County Parent Retreat.  Mark and I love that retreat, we've been to it twice, and can't wait for the next one.

One more thing we anxiously anticipating is the International Fragile X Conference, in Detroit in July 2010!  Isn't it funny how in July 2008 when we first started hearing about this one in 2010, that 2010 seemed so far away?  Why does two short years from now sound so infinitely far away?

1 comment:

Sarah said...

Just found your blog. It's adorable! Nice to "meet" another family dealing with FXS.

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