Life with Fragile X Syndrome

Yet another update on Monkey’s progress.

Melissa

Monkey had 4 days of school last week.  The comments we received from the teacher were consistent throughout the week.  She said:

  • his speech is increased
  • he is more attentive
  • he is still as distractible
  • he is still impulsive

So…we achieved the two main goals we had in starting the stimulant but didn’t address the two main issues we thought were holding him back.  Weird, eh?  I’m not sure what to do with this info.

Other things that were in the note or were mentioned at pick up were that:

  • he sat at a table and did FIVE puzzles one after the other.  One, he hates puzzles and two, he hates sitting…so this is no small feat.  She commented that once he was done, he was done.  But, c’mon…FIVE puzzles?  I suspect that he did all the puzzles on the table (they usually have 4 or 5 out depending on the size of the table they’re using) and objected when they added new ones and who can blame him?  They were changing the rules mid-game!
  • he has started SINGING along with the other kids rather than just doing the hand gestures.  I should ask them to record this because, frankly, I am having trouble believing this one.
  • he hates going to the school nurse, even when he takes a friend.  Just wait until she starts trying to take his blood pressure and isn’t just giving him a spoonful of his very favorite yogurt.  We’ve warned them…it won’t be pretty.  I’m afraid we may see a repeat of the effects of the “Ill Advised Halloween Costume of Aught-Seven.”

And, from today, his OT noted SIGNIFICANTLY IMPROVED attention during his OT session!  Nice.

Show me?

Melissa

So, the little darling has perfected “show me.”  It is very clear now, there is no doubt as to what he’s saying.  Just to be sure I’m  understanding him though, he’s started holding his hands out in front of himself, palms up, shoulders lifted as he says “Show me?”  Just like I do, lol.  It would have been nice if he’d added that little gesture back when I couldn’t understand what he was saying!!

He’s using it rather creatively too.  If I’m doing something he doesn’t like and he wants to distract me he’ll say “Show me?” and he’ll try to get me to follow him away from whatever I’m doing.  If he wants something he can’t reach, like the chips, he’ll say “Show me?” and lead me to the kitchen.  I’m like a trained seal…he speaks I follow along, lol.

It’s springtime!

Melissa

Oh, how my heart just *sings* when we hit this time of year!  The robins are everywhere, my spring flowers are coming up, I start my garden preparation and we get to have IEP meetings!  I just love spring.

Next week we have Monkey’s annual review on Thursday.  We’ll only be discussing summer services and summer goals this time because we’ve been in the system now for 3 years.  You all know what that means!  It’s our turn for the re-evaluations!  @#$&%!  Oops, I mean, Yayyy!

We have a meeting with our advocate on Monday.  She’ll be coming to the annual review not because we expect anything contentious but because we want her up to speed for the 3 year re-evaluation process.  Not that we expect anything contentious to come up there either but, well, we’ve been down this road before. 

I really hate to say anything that will jinx the whole process but there has been a really big push from the new superintendent to get the SPED program to where it should be.  He’s heard about the issues parents across the district have been having with certain members of the SPED staff ((Ya’ll didn’t think it was just one crazy/high maintenance Umma having these issues, did you??))and he is committed to changing the tone of parent/administration interaction.  So, we at least know who to call if the meeting goes to hell!

Not that it will go to hell…

Goodness gracious what a polite child!

Melissa

I’m not sure I can take any credit for this at all.  We do say please and thank you regularly but I think his teacher is more rigorous in enforcing manners.

This morning on the drive to school Duhdee and I were talking and I heard, from the back seat…

“Excuse me, Daddy?”

Duhdee kept talking but I stopped him and said, “Your son just said ‘Excuse me, Daddy’!”

Duhdee: “What, Monkey?”
Monkey… “Home?”

Ha!  It’s so much better than the days gone by (*touch wood*) when he’d whine “GO HOME!” the entire drive.

Conclusions: Uncertain.

Melissa

Monkey had his first day of school now that he’s taking the stimulant.  Today is probably a very bad day to expect anything due to the time change.  We had to PRY his little bottom out of his bed this morning at 7:30!  He never sleeps to 7:30!

Anyway, the teacher reported at pickup that he was very distractable during the morning as he was most of last week.  She also noted that he was making increased eye contact (is this really a sign that it’s working??) and that after lunch (and his 2nd dose) he was much more focused.

So, again the results are a mixed bag.  Is it working?  I think maybe?  It hasn’t turned him into a Monkey on speed so I guess it isn’t NOT working.

To be continued…(ad nauseam, I’m sure 😉 )

Day 1, done.

Melissa

So, I put on my big girl panties yesterday and gave the Monkey man his medication.

We had a good day.  I wasn’t sure if it was having a small effect or if it was wishful thinking.  Duhdee was convinced it was working in the morning when Monkey helped him make coffee and, at one point during the process, made sustained (30 seconds) of eye contact with him.  I don’t see how increased eye contact would be a result but….whatever.  It was the first time Monkey has ever held eye contact with Duhdee for that long, so Yay!  He had a 2nd dose at lunch.

This small dose does not seem to be affecting his appetite, he was a snack monster all day.  He was really, really talkative all day long.  He was not jumping from one topic to another as quickly.  He’d make 2 comments about something rather than just 1.   I’m not sure what I expected but it seemed like there were some small improvements.  I was still conflicted.

Then the medication wore off and HOLY SHEET batman!  He was bouncing, he was running, he was JUMPING ON ME, he was chewing on everything.  It was then I realized a few things…

1.)  He’d watched videos during the morning and he’d sat still and watched them through to the end vs jumping in place and jumping from video to video.

2.) He had not needed his chewy tube ALL day.

and

3.) Once he went back on to high speed, which in his case is normal, I couldn’t believe that we have survived nearly 6 years living with the Tasmanian Devil and never noticed.

So THIS is why people always say how amazed they are that we can keep up with him.  It’s all we’ve ever known so it was always hard to respond to that comment.  Now I too am amazed that we’ve kept up with him this long.

So, I guess it’s working but I’m still not truly convinced.  Maybe he was coming down with something…I guess we’ll see.

Soooooo…tomorrow morning…

Melissa

we start Monkey on a stimulant to try to address the “attentional difficulties” he’s having.  We’ll see how he does over the weekend and if it’s not working, and we’ll know immediately if it’s not, then we will stop.  If it does help then his school nurse is on board to do the afternoon dose for him.

I don’t want this.  I don’t want to medicate my sweet boy…my baby.  I also don’t want to hold him back in any way.  I’ll do it because the Dr. thinks he needs it.  His teacher has been doing ADHD checklists for him periodically for months.  The Dr. had us try other things first which, I know, made me mad because I wanted insta-results and not to have to pay out so much out of pocket.  It’s the right decision.  It might not be the right medication but, clearly, he needs some help with his attention.

Why does this feel like I’m failing at being his Umma?