Life with Fragile X Syndrome

The worst thing about having an only child with FXS is that I never know what is “normal” behavior and what is maybe a sign of problems.

For instance, this weekend Monkey was pretty much glued to me.  I said on more than one occasion that I wished I had a way to tie him to my back so I would at least have my arms free.  He was hanging on me constantly or asking for piggy back rides (he sign’s “pig” and says “back”, pretty darned cute and he came up with it all on his own.)

So..is this normal 4/5 year old behavior or a sign of anxiety?

Duhdee is down in Grampy’s bathroom tearing out his ceiling.  The leak damaged the plaster so it needed to be repaired anyway but the added bonus is that the plumber prefers to go through the ceiling anyway!  That saves us having to rip up our bathroom floor and remove our toilet.  Yay!

Grampy wants the plumber to replace anything that is questionable, not just the leak.  The plumbing is 70 years old, all cast iron….my fingers are crossed that this won’t be a multi-day event!

We had so much fun today, both Duhdee and I thanked Monkey for such a great day as we wished him good night.  What did we do?  We cleaned the basement.  Seriously.

We spent 5 hours in the basement sorting through toys, clothes, books and random crap.  We trashed tons of stuff and we have about twice as much set aside to donate.  It’s astounding how much was down there.  Even Grampy got into the spirit.  He was so impressed with how much we got done that he gave us the go ahead to clean out his stuff as well.  Monkey enjoyed playing with some of the old toys but mostly he just enjoyed running around enjoying all the new SPACE.

We were going to spend tomorrow morning doing runs to Goodwill but they don’t open early enough for us to do all of that before the plumber is due to arrive.  Fortunately, I’ve taken Tuesday off so we can do it then instead.

Who would have thought we’d have such an awesome day…cleaning?!

Today is the 100th day of school celebration (school wide), Superhero Day (school wide/part of Spirit Week – He’s wearing a Spiderman t-shirt and underwear though he has no clue who Spiderman is), Valentine’s Day and a good-bye party for one of his assistant teachers.  Phew. 

We just heard yesterday about the Valentine’s Day bit so last night Duhdee and I made up some Valentines.  I’m going to give Duhdee equal credit here because he used a razor blade to make the slits where the lollipop sticks pass through the butterfly and probably saved me a digit or two!  I think they’re super cute.

The butterfly pattern was from Skip to My Lou.  She has tons of great ideas!  I didn’t have enough googly eyes so we added antennae instead.

I sure hope Monkey enjoys his day and doesn’t get too hyperaroused by the jam packed schedule!

We have a built-in cabinet in our dining room and it’s filled with framed pictures of friends and family.  Two days ago Monkey began pointing at one of the photos and exclaiming “Yick!” 

We are so excited!  You see, he’s pointing at a picture of one of his cousins and NAMING him.  This morning I dug out a wallet sized photo of Yick and let Monkey have it.  I really have to wonder what else is in that brain of his that he hasn’t yet managed to get out. 

After nearly 5 years I had lost a bit of my belief that we’d ever experience this discovery of language with him.   I still hoped we would but I was resigning myself to a lifetime of not hearing him communicate verbally.  Now I’m getting greedy.  I want more, now!  Please?