Life with Fragile X Syndrome

No one was more shocked than we.

Melissa

Yesterday, we dropped Monkey off at pre-school as we do every morning.  I walked a few steps ahead of Monkey and Duhdee, who were holding hands, doling out M&Ms to induce Monkey to keep moving forward.  It’s a great system that works very well for us. 

Normally, Monkey eats the M’s as fast as I hand them to him.  We usually go through 4 or 5 M’s.  Recently Monkey has started hoarding his M’s.  He will hold the one I have just given him and reach for the next.  If I hesitate and we tell him to eat the one he’s holding he will put it in his mouth only to take it out again as soon as I hand him the next one.  This makes quite a mess, as you can imagine, so this morning I did not insist that he eat each M.  I would hand him a new one even though the last one was still in his hand.  By the time we reached the door to the classroom he had 3 M’s clutched in his hand.

I always hand him the last M after he steps through the classroom door.  This morning I held my hand out with the last M and he reached out with his fistful of M’s to grab the final one but, this time, he did something shocking.  He dropped all of the M’s into my outstretched palm and ran over to the table to join his friends, ST and teachers at their activity*.

Duhdee and I stood by his cubby staring in shock.  We were stunned.  He never runs to join a group activity as soon as he walks in the door.  He never gives up his M’s, usually he’s trying to grab any extras that I might have in addition to the ones he’s been given already.  He never stands across the room and happily waves good-bye to us as we walk out the door.

It figures that Monday is his final day of school for the year.  But gosh it was a nice way to start the day. 

*Don’t worry, the M’s didn’t go to waste.  I am happy to share that celebratory M’s are the very best tasting M’s ever.

How on earth does he know IGLOO?

Melissa

Last night, after we got back from our nightly walk with the dogs, Monkey asked for some “bubbles” (soda, in this case, Jones Root Beer.) Normally this would be denied but I thought, hmmm, I bet if I get him some bubbles he’ll stay sitting at the table. I thought maybe I could take advantage of it somehow but wasn’t sure exactly what I’d do. Duhdee looked at me like I’d lost my mind. Come to think of it, maybe I should have explained why I said yes!

Anyway, Monkey sat down at the table and I grabbed the nearest thing at hand. A set of wooden alphabet blocks/flashcards we bought at a yard sale two weeks ago. They look sort of like this:
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The pictures are slightly different but the concept is the same.

So I showed him 5 at a time, A is for apple, B is for ball, etc. Then I separated the picture from the letter and asked him to hand me the apple, ball, etc. We made it through about 1/2 the alphabet before he finished his little cup of root beer and headed towards bed.

I knew he’d nail the everyday objects but how the heck did he know what an igloo looks like?? I’ll have to ask his ST if she has igloo included in his PECs, lol. Somehow I doubt it.

***Update*** It was not, as I suspected, included in his PECs but the teaching assistant was able to explain it to us anyway.  One of his classmates brings his lunch to class in a cooler/lunchbox.  An Igloo brand lunchbox, of course.

Educational DVDs?

Melissa

Are there any DVDs that your kids have loved?  I’m looking for engaging DVDs that cover pre-school concepts like colors, shapes, numbers, letters, etc.  Monkey has learned so many signs from the Signing Time DVDs, we’re hoping to capitalize on this mode of learning to fill in gaps and firm up what he already knows in some cases.

What other techniques do you find work well?  We’re trying to come up with a list of learning activities for Duhdee and Monkey for this summer break.  Monkey is NOT a fan of board games, puzzles or flash cards *sigh* what creative ways have you found that you’ll share? 

I got my wish!

Melissa

The sun came out on Saturday and Duhdee promptly installed the AC units, lol.  It was in the 80’s on Saturday, it was in the mid-90’s yesterday (at home but we were in Maine along the coast so it was beautiful high 70’s with a breeze) and it’s in the 90’s again today!  Tomorrow looks like more of the same.  I am not complaining, the sun improves my mood so drastically…everyone else is miserable but I am very, very happy.

Something funny is going on here!

Melissa

Monkey has never needed a lot of sleep.  He dropped from two naps/day to one at 10 months, he stopped napping entirely around 18 months.  Duhdee protested at both junctures and tried REALLY hard to maintain the naps but you can’t make someone sleep (well, except with melatonin but we save that for nighttime emergencies, lol.)

Sometimes, when he has had a very rough day (or night before) he will nap but it’s not with any regularity and, more often than not, he will stay up all day despite being exhausted and ill tempered.

So, can someone explain this to me please?  Today, for the 3rd day in the last week, Monkey grabbed his blanky, marched into our bedroom and put himself down for a nap.  Yesterday, he watched a bit of TV before he decided to turn it off for a nap.  Today, he just went straight for the nap.  No one is complaining, but I am just so confused! 

Interested in homeschooling?

Melissa

For some time now I’ve been tossing around the idea that we should homeschool Monkey.  I feel very strongly that he learns best from us.  He has learned great things in pre-school from watching other kids but he also experiences a lot of anxiety at school. 

We had horrendous transitions to school from late October until February and he was really struggling in the classroom.  Despite the fact that we had written into his IEP the need for him to have a sensory diet, one was never put into place.  They’ve simply relied on giving him access to his blankie (for comfort) and a chewy tube whenever they think of it and the teacher has periodically argued to remove even those supports because they make him “look different.”  She’s been very adament that she wants him to look “normal” which is all well and good but not at the expense of his ability to cope in the classroom.

So, it’s been in the back of my mind that this would be a good thing for Monkey but I had never heard of anyone homeschooling kids with special needs before and I was, honestly, scared to even try it.  Last week a message came across the fragile x mailing list that I subscribe to from a mom who does just that.  Eventually someone mentioned that there is a yahoo group on this topic.  It’s been around a while and is a bit quiet but I hope that the renewed interest in it will change that.

I encourage anyone who is homeschooling or wants to homeschool to join, the more voices the better.  I actually think anyone could benefit from joining, I’m sure there are lots of things these folks do that we could use even if we continue with public school and supplement at home.

HS_FXS:  Homeschooling Fragile X Kids

Alpacas!

Melissa

We had a ton of fun visiting with the alpacas yesterday.  Monkey started off calling them cats (anything fuzzy, regardless of size, is a cat until we convince him otherwise) which cracked everyone up.  He really loved them, he was climbing on the stockade fencing and feeding them hay.  I think he’d make a great farmer.  Duhdee is not convinced.

Aren’t they CUTE?alpaca11.JPGalpaca21.JPGalpaca41.JPGalpaca31.JPG

“He’s looks so much like his Daddy!”

Melissa

This has been a constant refrain since Monkey was born.  It started the week he was born.  My mother-in-law brought a copy of the picture taken of Duhdee in the hospital when she came for her first visit and it took my breath away.  Monkey looked just like his dad, they could have been twins and the resemblence grows stronger every day. 

I’m sometimes asked if I am really his mother (jokingly, of course) because he looks like his father’s clone.  Duhdee takes great pride in his “Mini-me” and I can’t complain, they’re both very handsome.  Sometimes, when he was a little lump of a newborn, I felt a twinge of jealousy that when I looked at my son I didn’t see any part of me reflected in his face.  Don’t get me wrong, I think Monkey’s lucky that he got his Duhdee’s nose and OMG those eyelashes, but it made me a little sad to not be able to see at least a small part of me there.  After Monkey’s diagnosis I had a few bitter thoughts of “Great, now I know what he got from me.  My wonky gene, PERFECT!” 

But as he gets older it’s becoming more and more clear that Monkey got a little something extra from me and I am so amused.  Poor Duhdee is beside himself.  He still takes solace in the fact that Monkey looks just like him but he’s struggling with the fact the Monkey takes after me personality-wise. 

My in-laws mentioned last weekend that Duhdee hated to get dirty when he was a child.  He refused to have anything to do with their garden.  He was always washing his hands and keeping clean.  Now just look at the poor guy.  He’s got a son and wife who would be most happy on a farm with cows, pigs and chickens (especially cows!)  At the Memorial Day cook-out I realized half way through that there were only two people there with no shoes on, can you guess who they were?

Duhdee would be perfectly content, I think, to stay where we are now and I would be OK with that too but I would be SO excited to have an even larger place to dig in the dirt, climb trees and watch MY mini-me give himself dirt showers while Duhdee rolls his eyes and bemoans the fact that Monkey needs another bath. 

Until we find that perfect place though I’ll continue to cope by dragging Duhdee to agricultural fairs (cows!) and other types of farming fun.  This weekend?  Alpaca shearing!  Duhdee can’t wait, I’m sure.