Life with Fragile X Syndrome

We had an absolutely fabulous time visiting with my family.

Duhdee and my dad spent a lot of time fishing with mixed results.  Duhdee managed to somehow catch fish that were not much bigger than the lures he was using, that takes talent.  My poor dad said he needs to “reset” his fishing rod so that it catches the proper sized fish again, lol.  Twice during the week I dropped Monkey off at the boat launch so he could join Duhdee and Grampa out on the boat for a few hours.  He LOVED it.  Grampa’s boat has lots of gadgets with buttons and he was captivated but all the mischief he could get up to.  Grampa was pretty laid back about it all but he was glad Monkey didn’t discover the button to raise the engine on the boat out of the water until the very end of the last day on the lake.  Here’s hoping Monkey forgets that little tidbit before our next trip (but who really thinks he will???) since having the motor out of the WATER makes trolling and returning to dock a bit difficult.

During my Monkey-less hours I indulged in a time-honored tradition with my mom.  Visiting yard sales!  I didn’t buy much, since everything we buy has to be packed up and dragged back home!  Duhdee had put in a request for a small cast iron skillet to join the two larger cast iron skillets I’ve already bought for him at yard sales and I was happily able to fill his order.  He really enjoys cooking with cast iron and I enjoy eating so I consider it $5 well spent.  Now he needs to season it, which sounds complicated and an awful lot like work so I’m glad it was his idea and not mine to buy it.

When Monkey and I were left to our own devices we spent quite a lot of time riding Grampa’s quad up and down the mountain.  Grampa bought us a special harness that lets us strap Monkey securely to our chest which means we can steer and control the machine and not have to worry about Monkey landing on his head!  It’s quite nice.  Monkey is OBSESSED with riding the quad.  He woke up every morning and headed straight for the harness and started signing “go, go, go.”  He even started saying it but it comes out “doe” and not “go.”  I would tell him every morning that he first had to eat breakfast, brush his teeth and get dressed before we could go and he was mostly OK with that answer the first 10-15 times, then he’d start to get very sad.  The boy can really tug a heart string too, let me tell you.  He’ll put his palms to the side of his head and CRY the most pitiful cry.  Such a sad Monkey.  But he still had to eat, brush his teeth and get dressed!  He was not all that impressed with me in the mornings.

Besides riding the quad his favorite vacation activity was throwing rocks in the little brook that runs through my parents’ property.  He could do this for an hour, easily.  The first couple of days were rough since my patience for this activity was quite short.  I finally smartened up and found that with enough bug repellent, a chair and a decent book I could outlast Monkey and we were all much happier.

Let’s see, what else?  He made up a sign for “fire” that includes a vocalization “Dir!” he does the “more” sign vertical instead of horizontal.  We tried showing him the correct sign but he likes his, thank you very much and will not be dissuaded.  I’m sure he’ll get it right at some point but for now I’ll add this to the list of quirks (like everything animal-ish that is not our dogs = cat!) that I find so charming about my little Monkey.

The last night we were at camp I had hoped to get ice cream, go “moosin'” and then have a camp fire.  That’s a pretty ambitious schedule with a 4 year old when you finish dinner after 7PM and town is 7 miles away. When we returned from moosin’, Monkey was ready for bed so I put him down and then joined everyone else around the fire, clutching the baby monitor in my hand.  I heard a little bit of initial giggling but then it was quiet and we assumed Monkey was asleep.  NOPE.  The reason I couldn’t hear him on the monitor was because he’d gotten out of bed and come downstairs to turn on the TV (TV does not work, it’s there for DVDs) and then decided to lay down in front of the TV that wouldn’t turn on for him.  Duhdee found him there on the floor (still awake) when he went inside for a bathroom break.  Monkey then joined us for a half hour around the camp fire and I was a happy Umma indeed.

There are lots of little stories to share about the new things that Monkey is doing and the things that he’s saying.  I need to get a little bit of sleep though.  I will end with probably the highlight of the trip though…

Monkey is very uncertain about his Grampa.  We don’t see as much of my parents as we’d like and when we do it’s usually an “event” so it’s noisy and busy and we are all running every which way.  Monkey does fine with this busyness it’s just that he doesn’t get very much one on one time with anyone in particular.  And my dad is not one for sitting still anyway.  Even on vacation he’s always “puttering around.”  Seriously, he mowed their non-existent lawn (that’s a good story) TWICE in just over a week.  He just makes up work when he has too!  ANYWAY, the point is…Monkey is uncertain about Grampa.  He’s very shy around him and often leaves the room or hides his face when Grampa addresses him.  After spending the hours on the boat together they seemed to be bonding a bit.  Monkey was much more tolerant of Grampa’s attention, Grampa could even touch him!

The last hour we were at camp Grampa had us all pose for a family portrait in front of the big dirt pile (part of that good story I mentioned) and they used the quad as a tripod (we’re an inventive lot…also cheap, thus the improvised tripod but I’m guessing you got that cheap bit when I shared our mother/daughter yard saling tradition, right?) and he then had to put the quad away.  I thought this was the perfect opportunity to try to force a bit more Grampa/Monkey bonding and tried to put Monkey on Grampa’s lap for a ride.

Being the long, bone-less muscle that he is Monkey was able to effectively communicate his distaste for this particular idea of mine.  Grampa was disappointed.  I felt bad, really, I had just set my son up to REJECT my father, right?  Very smart move, Umma.  Ugh.  ANYWAY, I then had a brilliant idea.  I put Monkey in the raised seat BEHIND Grampa and showed him how to hold on.  He actually let me set him down and held on!  Grampa slooooowly drove down the driveway and Monkey went with him.  Screaming, of course, but with EXCITEMENT.  It was the cutest damn thing I think I’ve ever seen (except for this other new found skill that Monkey developed over vacation, that had both me AND my mom choked up from the utterly bittersweet…but mostly sweet…moment, that I’ll share later.)  My mom caught a few short videos of the action which I will share as soon as Grampa sends them to me.  I’m not sure who was more excited about the whole deal, Monkey, Grampa (who was glowing) or me.  You’ll even be able to hear Monkey and I screaming like fools on the videos, heh.  Bet you can’t wait.

Holy moly.  I guess I should have done mini-blogs while I was away.  I hope this didn’t give you a headache and I’ll fill in the teasers…later.  😉

I’m way busy at the moment (vacation fast approaching) but I HAVE to share this…

Pasted from IM (yes, that short on time):

[17:55] Duhdee: MONKEY JUST PEED WITHOUT BEING PROMPTED!!!!!
[17:55] Umma:
[17:55] Umma: holy crap!
[17:56] Umma: WOOOOHHOOOOOO
[17:56] Duhdee: tell me about it!
[17:56] Umma: lmao
[17:56] Umma: crying
[17:56] Umma: lol
[17:56] Duhdee: lol
[17:56] Duhdee: he’s in his boxers has been most of the day
[17:56] Duhdee: he just walked in there… lifted the lid and went
[17:56] Duhdee: lmao
[17:56] Umma: woah
[17:56] Duhdee: by the time I got in there he was peeing!

How cool is THAT?

On Sunday, before we went to NH for our nephew’s 2nd birthday party, we decided to go shopping at Toys R Us.  We needed a birthday present and we had some good coupons so we thought we’d take our time and pick out some stuff for Monkey as well.

We were able to pretty quickly narrow down the birthday options, we wanted an outdoor toy.  That may not sound like much but that does eliminate about 3/4 of the toys at TRU, lol.  We found a lawn mower that you push and bubbles come streaming out.  It was the hit of the pre-school set, btw, if anyone needs ideas for a 2-3 year old boy or girl.

We had a coupon for a free Thomas train as well so we browsed through that section and found a new engine (Spencer!) for Monkey.  He’s a big fan of the Trackmaster trains (motorized, not wooden) and he’s gathering quite the collection.  It took a while to drag him away from the train table but we eventually succeeded.  We found this wooden puzzle with colors and shapes, both things we’re working on at the moment, so we grabbed it and then died from sticker shock.  Really?  $20 for a wooden puzzle?  I need to go to more yard sales!  I got one for $.50 the last time I went out looking.

After this stop we decided that we needed to go to Old Navy.  Duhdee needed a new pair of shorts* and we wanted to pick up an outfit for the older nephew as well since he hadn’t yet received his present and we were giving a toy and clothes to the younger…we’re all about fairness here.  While Duhdee was shopping for clothes for his nephew I chased Monkey and “redirected” him away from the door.

Basically, I was the border collie preventing my charge from running into the street.  At one point I had him cornered in the back of the store where I could let him out of my sight because there was no escape route.  Suddenly he reappeared.  He was holding a small brown stuffed bear by the ear.  Monkey doesn’t do stuffed animals (at least not since early last fall when he abandoned his blue bear.)  He looked at me, then looked at the bear and pointed at it.  “Bearr!”  “Yes, it is!”   He then hugged the bear and held it to his shoulder like it was a baby and said “Awwwwww!”  And then I died from the sweetness (which is, FYI, a whole lot nicer than dying of sticker shock.)

I quickly herded Monkey over to his Duhdee, sure that he’d toss the bear aside at any moment and run off toward the exit again but he didn’t.  In fact, he cuddled the bear for the rest of our time in the store and then marched off toward the check-out with us sighing “Awwww” over his bear.  Of course, we bought the damn bear which is a good thing since he threw himself to the ground to have a fit when we had to let the cashier ring it up.  He was good as gold once she handed it back.

It is a darn cute bear.

*Is this a guy thing or is it just my husband?  He has like 2 pairs of shorts and 2 pairs of pants that he wears all the damn time.  When they get worn or get HOLES he waits until he judges them to be “bad enough” and then he buys a replacement pair.  On Sunday, he found an identical pair to what he was wearing (they had a ripped hem) and swapped them in the parking lot (he was sitting it the truck but still.)  The ripped shorts are now “yard shorts” which means they’re reserved for the neighbors vs family now.

Monkey outsmarts us on an almost daily basis.  I keep thinking to myself “I need to blog that!” when he does something like this but it slips my mind.  I have a few recent examples to share though.

1.  Monkey looks at Duhdee and points toward the floor.  He’ll sign/say “Help, look!”  If this doesn’t work he will get down on the floor (with sound effects to let us know exactly how hard it is to get down on the floor, you’d think he was 40 not 4!) and look under the couch.  At this point Duhdee usually gives in and gets down on his stomach to look under the couch.  Sometimes there is something under there but most times it’s just an elaborate ruse to get Duhdee on the floor so he can jump on his back and tell him “go!” which is Duhdee’s cue that he should crawl around with a giggling Monkey on his back.  Once, when I kept refusing to fall for this trick, Monkey placed something under the edge of the coffee table so I could see that there WAS something under there to look at!  Yes, I then “fell” for it and he got his piggy back ride.

2.  This past weekend we were visiting Duhdee’s sister at the campground they spend summers in.  There is a pond across a small field from their campsite and Monkey is OBSESSED with getting to that pond.  Duhdee and I took turns chasing him down and heading him off.  After a while a game of baseball started up amongst the other kids.  Monkey saw his chance.  He grabbed the baseball and threw it to his left and Duhdee chased it.  Monkey ran to the right and headed straight for the pond.  It might have worked too but I was right behind him and Duhdee did realize what he was doing right after he turned away from Monkey, lol.

3.  On Monday, at 5, Monkey was looking for Duhdee to turn on the TV so he could watch Curious George.  Duhdee always turns on “George” while he cooks dinner but we’ve been cutting back on TV time so…he told Monkey no, that he could use the computer instead.  Monkey was not impressed and stewed over it for a few minutes.  Duhdee next heard “George” on the television in OUR bedroom.  What??  We have hidden the remote control to prevent just this sort of rebellion!  The kid has learned to turn the TV on and change the channels using the buttons on the front of the TV.  That tactic didn’t last very long!  Monkey is going to be very disappointed when that TV disappears I think.  Darn kid!

An aside, the folks at the clinic were very impressed that Monkey has learned which channels “his” shows are on.  He flips between 2, 11, 16 (the 3 PBS stations), 24 (Disney) and 25 (Nickalodeon).  From what I’ve been reading lately though this is a pretty common FX skill 🙂

When Monkey was younger he played with a Leap Frog Fridge Farm magnet set all the time.  I had a stroke of brilliance and bought him the Leap Frog Fridge Phonic set and he promptly abandoned ALL of the magnets.  Bugger.

Recently Sunny Day posted about the phonics set and mentioned that she only leaves a few of the magnets out at at time for, in her case, mess control.  A very small, dim bulb wavered over my head and I thought, hmmm…I wonder if leaving fewer of the magnets would see less overwhelming to Monkey?

I came home and promptly removed all of the magnets from the fridge except for the letters of his name and within 5 minutes Monkey was exploring them.  Woah!  So thank you to Sunny Day for providing the spark!

On Friday we were back at Children’s Hospital for the genetics portion of the yearly evaluation.  There was quite a crowd this year.  Besides Monkey and ourselves there were 4 other people in the room for this part.  This visit gives them a chance to observe Monkey and ask questions about seizures (none), eye problems (none), heart problems (none), etc.  It also gives us a chance to voice any concerns and get some great advice/input.

We discussed the toileting challenges we’re facing.  Dr. Picker suggested keeping a food diary to see if we can pinpoint foods that might be related to his excessively soft stools.  We haven’t set this up yet but we’ll get there 🙂

We discussed our concerns with Monkey’s ability to focus and sit still for learning, this seems to be a constant source of comment from his teachers and therapists.  Duhdee and I are well aware of his high activity level.  The child does not stop moving.  We take a tag team approach to get through the day.  On a good day we’ll take 30+ minute shifts, sometimes a few hours…but on bad days…we will drag though 10 minutes of chasing him before we cry uncle.  It is tough.

Since ADHD is common in boys with FXS they are going to take a closer look at his Connors scores.  I did one on Thursday and we’re going to have his summer teacher rate him as well.  If they look “off” we’ll have to consider medicating him.  They really don’t want to do it at this age, it’s hard to even diagnose ADHD at this age, but if it’s holding him back we’ll do it.  Personally, I’d like the school to implement a sensory diet and a behavior plan before we jump to medication.  I am not convinced they’re committed enough which is unfortunate.

We also discussed Monkey’s PDD diagnosis.  It was first given to him a few months after he was diagnosed with FXS by doctors who were not familiar with FXS.  At that time they said that it COULD be the FX and that he’d lose the label at some point but that it would make us eligible for extra services so we didn’t argue.  Dr. Picker doesn’t see autism when he looks at Monkey.  He said he’d be surprised if he kept the label but he also said that if the evaluator is not familiar with FXS that he very well could get a straight autism diagnosis and lose the PDD.

Duhdee and I feel that the school looks to that PDD too heavily.  They’re not focusing on the whole child, they’re focusing on the PDD aspect.  We’ve put off having the additional screening because we were worried about the evaluator confusing FX symptoms with ASD symptoms.  Dr. Picker knows of a psychologist, however, who is very good at recognizing the differences between FX and ASD.  He said that even though he does not see it, if she sees it and gives him that label then he’ll be confident that it’s proper.  That’s all we can ask.  He’s going to see if she thinks we should do the evaluation now of if we should see how the school situation plays out.

We also discussed the benefits of extra OT.  The OT did say that it would benefit Monkey to get extra OT but our insurance company is notoriously difficult to work with on this.  I am going to see if we can get the OT covered on my own first but they did indicate that they would write a letter of medical necessity if we have any trouble.  Of course, even that does not give any guaruntees.

Dr. Picker commented on how very well Monkey is doing overall, he said he’s seeing great maturity from him and physically he’s doing great.  He’s going to work with our pediatrician on a couple of things (folic acid and ultimately ADHD meds if necessary) but he thinks we’re doing as well.

Oh, and, I was brave and asked for help for me too 🙂  I asked for a referral to a psychiatrist who has at least a basic understanding of FXS carrier issues.  I should be seeing that soon.  Also they’re starting a support group for FXS carrier moms through the clinic and I’ve asked to be included in that as well. 

This was a great way to end a very stressful week!