BasicallyFX

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!