Life with Fragile X Syndrome

I am not, by any stretch of the imagination, a daredevil. I am scared of heights, claustrophobic, I hate being too hot (or too cold), I don’t like bugs and let’s not discuss spiders. I get my adreneline rushes by working on complex legal transactions, get the picture?

Duhdee on the other hand loves anything with a motor…the faster, the better. There is only one reason he doesn’t own a motorcycle and that is because he flipped a snowmobile at over 90 mph when we first started dating. Since that day he’s gotten nothing but a “Have you forgotten the time….” look from me coupled with a “Only if you triple your life insurance,” comment when he brings it up. He no longer brings it up. 

Monkey has seemed to follow me in this department so far. He holds the handrail on the stairs, he holds hands when we’re outside, he never climbs anything other than his 2 step foot stool. Sure, he loves being swung around by his ankles but only by Duhdee who he trusts without question. I mean, Duhdee’s only dropped him once, right? I doubt Monkey even remembers ((But, oh, yes, Umma does!!  It’s mostly forgiven.))

Anyway, he’s always been a cautious boy which is one reason it never crossed my mind that Monkey would hit the door frame in his new swing! I thought it was due to his nature but now I’m starting to wonder. Two days ago I witnessed Monkey, while swinging in his swing, let go of the ropes ever so slightly. I told him, sternly, to hold on.  He did.

Last night, as we waited for Duhdee to get home from getting the pizza he was once again swinging. The next thing I know he’s on his back on the floor looking dazed. He’s fine, he has a little scrape at the base of his back but otherwise is unmarked. We discussed the fact that he needs to hold on while he swings but I’m pretty sure, based on the gleam in his eye as he headed back to the swing, he was thinking “Let’s do it again!”

When we were at the conference we purchased an indoor swing. Monkey loooooves to swing so we’d been considering one for a while. One look at the “special conference pricing” and we were sold. Over a month and many, many frustrating phone calls later ((and finally a fraud report to our bank)) and we were the proud owners of this:

Not terribly exciting on it’s own but when you add the strap swing, the trapeze bar AND the net swing. Oh, baby! Unfortunately, Monkey didn’t see anything terribly exciting about any of it, it seemed. I really and truly thought he’d love that net swing. I sure do! It gives great all around pressure on your body while you swing, it was perfect!

We put it up and, except for the times I used it, it hung forlorn and neglected in our doorway. This was what I was fearing would happen, to be honest. It never fails that when we find something we think Monkey will loooooove and convince ourselves it’s a good way to spend our hard earned pennies; he hates it…or at least is entirely indifferent to it. It’s frustrating.

So, I left that net swing up for a long time. I used it and was able to get Monkey to use it for a few seconds at a time while sitting in my lap but he wouldn’t use it on his own. The final straw came yesterday when he played with it briefly without actually getting in it and knocked himself down. He was fine but he was shaken up and I knew he wasn’t going to even look at it for a while. FINE. I put the net swing in the bag and, on a whim, hung the strap swing in it’s place. Monkey was not a fan at first. He  was used to seeing the net swing hanging there by this time and wanted me to fix it. I told him no, the strap swing is staying put for a while.

Not 5 minutes later, he was in that swing…swinging. And just like that this overpriced piece of metal, that I was beginning to resent, has become a source of total joy. If I ever manage to get him to use it while wearing something other than a pair of Buzz Lightyear underwear I’ll even let you see.

If you’re in the eastern Massachusetts area I’d love to invite you to check out a brand new resource group for families affected by fragile X syndrome!  There is a short form at the bottom of the page where you can sign up to receive updates from the group and if you want to help get the group up and running you can make that known as well!

Something remarkable happened yesterday.  Monkey and I went grocery shopping and Monkey started having a really tough time managing all the stimuli.  He knew it and he even tried to fix it!  Anyone who’s been reading this blog for a while is thinking “Uh oh!” because Monkey does not have a history of solving his hyperarousal issues “appropriately,” now does he?  He is getting it though and I’m so excited. 

Grocery shopping is no simple matter in our house.  I remember, as a kid, we went grocery shopping once a week and we went to one supermarket.  Rarely did we make other stops for specialty items.  Duhdee is all about making multiple stops for specialty items.  Since it’s my routine now, I am simplifying it a bit but we still needed to make 2 stops.  We can do that, right?

The first stop was one we do maybe once a month.  Since we go so rarely the list is often long and the items are located all over the store.  I’m still learning my way around this store and my list was not in any particular order.  By the time we had finished, Monkey was ready to go home but we couldn’t.  The other store is the weekly store, it’s where we get milk, bread, juice, etc.  We couldn’t skip it.  Deep breath, encouraging words and off we went.

When we arrived at the second store Monkey began letting me know we were in for a bit of a time.  He was flapping his hands like crazy, he was hopping in place a bit to get that extra input through his feet.  I initially thought, “If we just hurry and get home as fast as possible, we’ll be fine.”  Wait, did you just cyber-slap me?  Why not?  You shoulda :-)! 

I took one more look at my little boy as he pressed his fists into his solar plexus.  He was starting to fall apart and he knew it.  I’ve never seen him give himself input like this when we’re out and about!  I quickly pulled my carriage to the side of the aisle and asked him if he needed a hug.  He said he did.

I knelt there on the floor hugging him tightly.  He kept his arms between us at first using them for extra pressure as I squeezed him.  He had his chin pressed firmly into my left shoulder gathering even more input.  Gradually his body stilled and then his arms went around my neck and he squeezed back.  We stayed there on the floor with dozens of people walking around us. 

Some people looked at me and smiled when we made eye contact.  A few took a second look when they got around to where they could see Monkey’s face.  I’m sure they assumed he was crying but he wasn’t.  He was just hugging his Money.  No one said a word about the fact that I was blocking part of the aisle, they stepped around and grabbed what the needed and then moved on.  I was amazed.  It let me keep my calm focus and pass it on to Monkey.  I wish I could have told people how very awesome they were being but my attention was needed elsewhere.

Since I couldn’t take the time yesterday, let me do it today.  THANK YOU to everyone who gave me and my baby the space yesterday to hug it out.  You have no idea how amazing it was for me to be able to kneel on that floor and give him what he needed without anyone judging either of us for it.  A simple smile when you see a parent or child struggling and the compassion to just step around them even if they’re partially blocking your access to those yummy, yummy Joe’s O’s is an amazing gift and so simple to do.

Now, to finally get to the most amazing part, when he was done, Monkey told me, “Ready.”  And we finished our shopping trip.   We even tossed in a 3rd non-essential stop.  Who would have ever thought it?