Life with Fragile X Syndrome

if your adorable, almost 5-year-old, son was diligently picking up ALL of his toys and putting them away in hopes that you would just maybe let him vaccuum, would you be able to turn him down?  No, I didn’t think so.  Me either.

I mentioned before that we’d been accepted into the language study at the Waisman Center and last week we recieved word that we’ll be traveling this summer for the first visit.  We need to figure out when Monkey’s summer break begins, he’s in an 11 month classroom so we don’t know exactly when his break is yet.  Honestly, it just never occurred to us to ask, lol.  SO, once we get the dates of his summer break we’ll confirm the trip.  It should be fun.  I was a bit worried about visiting Wisconsin in February/March (the initial timeframe) but July/August sounds just about perfect to me.

I need to remember to work on saying Wisconsin without using my very best mid-western accent…it will undoubtedly annoy folks otherwise 😉

Yesterday was a pretty exciting day in our household.  We did lots of Monkey’s favorite things!  We:

• worked with tools in the basement;
• vacuumed the house;
• took showers; and,
• planted seeds in the garden.

Can you believe how exciting?  Monkey was absolutely thrilled, lol.  He’s such an easy kid to entertain.  Things today that will please him are:

• no school;
• the landscapers came with leaf blowers and a power lawn dethatcher;
• a trip to Costco (it’s always windy, there are seagulls to watch and tons of trains…the most exciting place ever and that’s just the parking lot!); and,
• baking bread (after dinner when Umma gets home.)

Seriously, could it get any more exciting than that?  I suppose the builders could be working on the remodel next door but that just might be too much 😀

I have a cold, I feel absolutely miserable.  I took Claritan D to help me sleep but my body reacts so strangely to cold medicines that, although it did clear my nose (mostly), I’m jittery and have been up and down since 1:30 AM.  I can’t take Nyquil or any of the other standard cold meds because they give me nightmares and restless legs.  So.

Monkey just came out of his room, took a turn about the kitchen and then wandered through the dining room.  When he caught sight of me, up before him(!?), he ran to our bedroom to check my side of the bed.  He then ran straight to his room and went back to bed.  Sun or not it must still be nighttime if Umma is up, lol.

He’s now back up and eyeing me suspiciously…as if I am up to something devious just by being awake first.

It is the weekend for me and the start of April vacation for Monkey…we both sorely need our respective breaks.  Even Duhdee is appearing to be a bit worn around the edges.  Stress seems to be piling up for everyone in our lives these days.

We did get some good news yesterday.  Duhdee asked Monkey’s teacher about the reports for the upcoming IEP meeting and, for once, there are none!  Since we are not changing his services or his placement we will just be sitting down to talk adjust his goals.  I’ve said before that I am comfortable letting the school take the lead in this area.  They work with him daily, they see his strengths and weaknesses and they know where he “should” be in terms of skills.  It does seem like this will be an “easy” meeting.

I am going to ask them to add Therapeutic Listening to his IEP.  The OT thinks it will benefit him but the district ran out of equipment.  We offered to buy our own but they haven’t been very willing to work with us for some reason.  I think if we add it to the IEP it will force them to step up.  I am still very willing to buy whatever he needs but I need them to give me the information I need to do so.  We’ll see.

I’m not sure what we’ll be doing today.  We created a list of tasks for ourselves this weekend but Monkey is lobbying for a train ride…

Monkey had a really tough day at school yesterday.  He was not dysregulated, he was just not that interested in anything they had to offer him.  At one point, the class was sitting and cutting out dinosaurs that they had colored, Monkey looked at the teacher and signed “snack.”  The teacher told him “No, we have to cut out our dinosaurs, then we can have snack.”  Monkey whined but then proceeded to cut out his dinosaur faster than she has ever seen him move, lol.  He thrust it at her and got his snack.  What a crack up.

Anyway, the whole day was like that.  He was impatient with the activities, his mind was wandering.  They suspect that it’s because they’ve been talking about vacation week, which is next week.  I’m pretty sure Monkey is ready for that break.  He is certainly quite put out with us each morning when we insist that he go to school.

This morning we were ready early enough for us to take an alternate route to school so I asked him if he wanted to take the bus to school.  He was so excited!   On the way to the bus stop he kept pointing out the various routes we take when we walk the dogs.  He sat on the bench at the bus stop and waited patiently until a bus came into view.  Unfortunately the bus was going in the wrong direction.  He spent the last few minutes jumping up and down excitedly watching for the next bus.  When it arrived he yelled “Yeah!” and waved to the driver, lol. 

He quickly found a seat and sat down.  He turned to face the bus full of very serious morning commuters (we are a grumpy lot) and beamed at them.  He was so happy to be on that bus.  People couldn’t help but smile back.  Every commuter bus should have a Monkey on board, lol.

The bus ride is very short but he sure enjoyed every second.  When we got off the bus at our stop he turned and waved bye-bye to the driver.  At this point it got a little sticky though and it crossed my mind that maybe it had been a mistake.  Monkey looked at me, looked at the school and said “Nooooo, Deeee, home!” while signing “Daddy” and “walk.”  Uh oh.  I was able to get him moving toward the school with a little convincing and he did great from then on.  He walked into the classroom, checked in and decided to paint for his first activity.  He was waving at me through the door as I left, happy as a clam.

I floated off to the bus stop to resume the journey to work blissfully unaware that I’d left my little cup of liquid gold (tea with honey) sitting on the floor in Monkey’s classroom.  I didn’t realize it until I reached my subway stop downtown and couldn’t figure out why I felt as if my legs were made of lead. 

Oh, well.  It was a small price to pay for a little adventure this morning.

I wish we could have started the celebration a little later (the egg hunt commenced at 5:30 AM!) but we had a great day.  Monkey was so enthralled with his new toothbrush (“orange!”)  that we had a little bit of trouble convincing him to even look for the eggs.  Silly boy wanted to brush his teeth immediately.

After the egg hunt Duhdee set Monkey up on the computer with YouTube and I do believe I fell back asleep, oops.

We had invited Duhdee’s parents, my parents and Duhdee’s grandfather over for dinner.  Duhdee cooked a ham (with a delish pineapple and rum glaze), asperagus and mashed potatoes.  We had deviled eggs and shrimp cocktail for appetizers and for dessert…cheesecake!  Everything was amazing, Duhdee really outdid himself!

Monkey was a bit reluctant to spend time with us before dinner but during and after dinner he did great.  Duhdee was tickling him and sending him on missions.  Everyone got high 5’s and hugs.  At one point Duhdee sent him on a mission to “Go give Grammy a hug.”  Of course, there were two Grammy’s there, the look on his face as he looked from one to the other was priceless.  He finally settled on Grammy W. and went back to my mom as his next mission, lol.

Good company, good food, good wine…that’s my kind of day 🙂

**Edited to add**

I can’t believe I forgot the cutest part of the meal, as Duhdee reminded me.  I had set the table with wine glasses.  When it was time for dinner I was quizzing Monkey on what he wanted to drink, I offered him both rootbeer and sweet tea.  He told me “beer” but when I grabbed his wine glass to go fill it he apparently thought I was taking it away.  He quickly reached out and grabbed another wine glass and started to take it to the kitchen.  When I made him return it to the table he very deliberately set it in front of himself.  He was very excited when I returned with his “beer” in a wine glass.