Life with Fragile X Syndrome

I found the draft I mentioned yesterday and decided to post it.  

I’ve mentioned before that as Monkey has gotten older the “what people think” issue is more in our thoughts because he looks so average and yet it is clear in his actions that he is not “typical.” 

Sometimes his issues with FX, the hyperarousal, for example, look like something else to the average passersby.  He’s not tantruming but people assume he is doing just that and respond to us accordingly…as if we are coddling an out of control brat.  In the moment we can’t educate them, we are too focused on helping Monkey regain his equalibrium while maintaining our own 😉

Last Sunday, we took Monkey bowling ((candlepin)).  He had gone bowling one other time during a birthday party and he enjoyed himself so we thought we would go again. 

We were assigned a lane next to a mother and son who were rather serious about bowling and it occurred to me that they might not be very excited to end up sharing space with us.  Not realizing that they had their own bowling balls I made the mistake of swiping their balls twice before they clued me in.  I apologized and made every effort to avoid a repeat although Monkey did grab one of their balls at one point after that.  The mom was very pleasant and told me not to worry about it.  She also noted with a smile that Monkey outbowled her on a particular set.  I think he’s on to something, “Slow-Mo” bowling is surprisingly effective.

As time went on Monkey began getting hyperaroused.  He was cycling quickly between happy (cheering) and falling on the ground.  Duhdee and I do what we normally do which is provide lots of deep pressure to help him regain control.  By the time his turn started he would be ready to go, when he was finished with his final ball he would fall to the ground.  To any outside observer he probably looked like a total brat and there were Duhdee and I sitting with him on our laps hugging and squeezing him.   People who weren’t staring were purposely avoiding eye contact. 

We left the bowling alley in pretty high spirits.  Imagine what you would think if you saw a husband and wife walking happily out the door praising the little demon who had just spent the last 15 minutes acting like a total brat.  We, of course, knew it was a victory.  Monkey was only able to handle 7 frames last time before he had a meltdown.  He made it through all 10 frames this time and there was no meltdown.  There was whining, but no tears.  When he slipped to the floor he would reach out to one of us for the hugs he needed to regain his composure.  He was not fully in control of himself but he was seeking what he needed to get back in control and responding well to it when we provided it.  He was able to stay balanced enough that we were able to go shopping after the bowling trip.

Grammy informed me that I never told them we went bowling with Monkey back in January, lol.  I guess that just proves I don’t blog everything though it often feels like it!  I know I started a post at one point but it was really negative and it bummed me out. 

So, yeah, we went.  Bowling and bowling alleys are very stimulating.  There is a lot of noise and activity.  You have to wear shoes that are not your own.  You are not allowed to press all the buttons you want, in fact there are some buttons Umma and Duhdee will dive across the floor and startle the heck out of you to prevent you from pushing.  Repeatedly.

It wasn’t a total disaster and when we left we were actually in pretty high spirits.  He did much better than we thought he’d do.  The first time he went he did not make it through an entire game.  He was able to do that this time so we were excited by the progress. 

The problem arose after we were home and I watched the videos I took and I started thinking about how we appeared to others around us.  He was very whiny.  He was impulsive.  He needed constant attention and redirection.  He threw himself on the ground many times not in a tantrum but because he was so overstimulated.  It was exhausting for all of us but we still claim it as a victory because he did better than last time.  We’ll keep trying.

Monkey has been playing with his kitchen a lot.  He keeps putting the sunny-side-up egg in a frying pan and then trying to FLIP it.  Duhdee says he doesn’t cook his eggs that way though, lol.  He must be confusing it with some other food Duhdee flips in the pan.  I keep trying to get him to use the spatula but he is very insistent.  He even comes to me and requests hand-over-hand assistance with the flipping 🙂

It’s so unfair!  I need more weekend and less week!

On Saturday we went to visit with Grammy & Grampy in New Hampshire.  Since we were headed north Umma decided to toss in a little side trip so we could pick up a play kitchen for Monkey.  We’d been tossing the idea around for some time.  At school the kitchen area is at the top of his list for choices and when we visited the library recently he ran straight for the little playkitchen they had set up.  We finally found one on craigslist that was a decent price, in great shape and somewhat near the city.

Monkey absolutely loves it.  When we got to Grammy & Grampy’s we had to take it out of the truck to get to some other stuff in there so we set it in the entry for him to explore.  He inspected all the doors and drawers, checked out the foods and even had us move it away from the wall so he could see behind it, lol. 

We were able to get him to leave it though.  He is obsessed with having Duhdee “eat” his arms, legs, belly, etc.  He just shrieks with laughter as Duhdee pretends to chew on his appendages…weirdo.  He is very insistant about playing the game and Duhdee has started to use it to get Monkey to do things he wouldn’t normally do.  

A typical exchange:

Monkey: “Eat arm!”
Duhdee: “You want me to eat your arm?”
Monkey: “Yeah, yes! Please!”
Dudhee: “OK, are you ready for your mission?”
Monkey:  Looks around the room for likely targets, “Yeah, yes!”
Duhdee: “OK, go give Grammy a kiss.”
Monkey: Runs to Grammy, gives her a kiss then runs straight to Duhdee for his reward.

Monkey can do this for hours.  He will give everyone kisses, high fives, hugs, etc.  It’s an awesome game until Duhdee is worn out, lol.

On Sunday we just puttered around the house.  Duhdee slept in while Umma and Monkey played with the kitchen and with the train set.  We also attempted to make coffee cake muffin tops but that was a horrid failure, lol.  When Duhdee got up Umma took a quick nap while he and Monkey ate and made coffee.  Then we proceeded to do absolutely nothing!  *Bliss*  Next weekend will be a busy one so we had to take advantage of the opportunity.

I just received an e-mail from my dad that is going to have me chuckling for a while.

From:  Grampa
To:  Umma
Subject:  Brrrr

Got up this morning it was 56 degrees inside the house…I check the thermostat it was set on 65…hummmm wondering why, went to check the breaker but found the problem…someone can reach the main burner switch by the door…lol we saved some energy last eve and night.

Love, Dad

Any guesses as to who that “someone” might have been??  Hee.  Take your eye off him for one second and he tries to turn his grandparents into popsicles!

Sorry folks!

See this post first, then see below the cut for the definition.

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