Home from school.

Monkey woke up yesterday with a runny nose.  He otherwise seemed fine so we sent him to school.  His teacher called after he’d been there for a while to report that he had been unhappy most of the morning and that he had fallen asleep, in the gym, during free play.  She wanted to let him nap for a while longer and then see how he was feeling.  Duhdee ended up going to bring him home.   Monkey’s left eye was a bit red and puffy but he seemed to be feeling better as the afternoon wore on so we took a wait and see approach.

This AM he woke up with the same puffy eye and we took him to the Dr.  His normal Dr. was out today so we saw a substitute.  Stranger + eye exam + FX = Not Good.  The Dr. did praise us for staying so calm, lol.  We’re just used to it I guess.

She couldn’t see a foreign body and she didn’t dare to try to test for an abrasion given his thrashing. 

We were sent home with two prescriptions, one for oral and one for topical antibiotics.  We’re not holding out much hope that we’ll be able to use the ointment on his eye (maybe when he’s sleeping?) so she gave us both.  If he’s not better in 2-3 days she said we should take him straight to the hospital for a more thorough exam.  Wouldn’t that be fun?  She did mention “possible” sedation needed, ya think? 

Fragile X 5K

Been there, done that, got the t-shirt!

I’m so happy we did it.  We didn’t come even close to placing obviously but I was very pleased with how we did considering we’ve only been running for the last 10 weeks.

I think we placed 29 and 30 err…make that 39 and 40 overall, Duhdee was the #11 male in his age bracket and I was #10 woman in mine.  Also, Duhdee appeared to be the first person to finish who was pushing a stroller, lol.  I think that extra 45 lbs. he was pushing deserves some extra credit 😉

We’re now going to drop down to only 2 runs/week for the winter.  We’re going to try to improve our times.  We finished in a little over 30 minutes, the first place runner finished in a little over 15 minutes.  Ouch!

I don’t know what to write about!

It seems like school issues/drama have been totally taking over our lives for the last 5 months.  Now that we have Monkey in a great classroom and he’s being successful I’ve hit a bit of a wall.  We are so thrilled with how things are going right now, a huge weight has been lifted from our shoulders and it’s a little disorienting to suddenly have a major source of worry disapper.

Duhdee and I finished our last training run for the Fragile X 5K on Monday.  Last night we did a test run and we’re fine, we will totally finish the race.  The race is this coming Sunday!  I think we’re going to keep running after this too.  I know I had planned on it but I wasn’t sure what Duhdee’s thoughts were.  He is not a big fan of running!  I doubt I will ever convince him to run anything more than a 5K but it means so much to me that he decided to join me in this.

That’s about it.  It’s so weird to not have any drama but I’ll cope!  I’m definitely going to enjoy these days where our biggest problem is what to do with all the art pieces Monkey is suddenly flooding us with!  He sat yesterday for TEN MINUTES and worked on a gluing project.   That is easily a record…perhaps by more than 9 minutes, lol.


He did it AGAIN!

We talked up how well he did yesterday before we left this morning and we shared some high fives.  He asked me to carry him down the stairs (“Ride?”) and I agreed.  I let him know that I was carrying him down the stairs because he did SUCH a good job walking to class yesterday!  He seems very proud of himself.

On the way over to school he took some unprompted deep breaths.  Traffic was awful but he did very well.  He was a little upset about getting out of the truck once we got there but once he was on his feet he fairly sprinted to his classroom.  He checked in to class by moving his picture from his cubby to the group board and then joined 2 friends at the water table. 

That’s it, piece of cake.  Our experience in the past has been that once he reaches this point he maintains really well.  Last year we hit this point in…MAY.  I really think this has been a great switch for him.

ALSO, yesterday at lunch he finished faster than the other kids (shocker, the kid is an eating machine these days) so they sent him to read books while the rest of the class finished up.  He sat down to read “Brown Bear” and pointed out the pictures and named them.  That’s a first for school too.  He’s done it at home before but this shows how much more comfortable he is in the new class.


Monkey walked into his classroom today without once sitting down to protest.  He whined a few times in the car but he’s now taking deep breaths with Duhdee and I to calm down so it really was very minimal. 

It was the best transition he’s had since last June.  We are SO excited!  Go Monkey!

Once we were in the classroom Duhdee helped him move his picture from his cubbie to the group area to signal that he was now in school (they move it back to their cubbies at the end of the day to signal that they are now going home.)  He then joined some friends at the water table, he didn’t even glance up when we left.

Fortunately, there was no one in the hallway to witness the Victory Dance.  Ohhhh, yeah!


This has been one of the longest weeks ever.  Of course, every week seems that way right now 🙂

Monkey seems to be settling in to his new classroom.  He’s still not able to walk all the way to the classroom in the mornings but once we’re there he jumps right in to activities.  It was reported yesterday that he played chase for quite a long time and then participated in a game of “Ring Around the Rosie!”  He’s played this with me before but he’s never played with a large group.  Quite impressive.

His teacher noted that he does not like to color with markers, that they require a lot of fine motor control and he prefers to not engage.  Can you folks think of any fun ways to get him to participate?


Transition? We don’t need no stinking transition!

Despite the assurances given to us by his IEP team leader that they would work out a gradual transition to avoid upsetting Monkey, Monkey is in his new classroom after only a single day of support.  We should have expected this, right?

What we had expected:  A few days (to be determined by Monkey’s behavior) of spending a few hours in the new classroom becoming familiar with the new kids, the new room and the new staff.  He would have a favored staff member from his other class with him during these hours.

What happend:  His prior teacher informed us she had planned to move him on Tuesday but that his signed IEP was missing.  We argued for the gradual transition we were offered and we were turned down flat by the teacher.  The signed IEP turned up on Tuesday afternoon so the switch was planned for Wednesday.  The favored staff member took him to the new classroom and he stayed there all day. 

It was reported that he had a GREAT day!  That he had the best circle time (period of high stress for him) ever!  SEE THEY WERE RIGHT!

Except…they weren’t.  We dropped Monkey off in his new class this AM after a really bad transition to school.  We figured why bother dropping him off in the other room if they’re just going to dump him in the new class after we leave?   Monkey was back to kicking off his shoes, which he does when he is extremely stressed.  The teacher commented that he “loves” to take his shoes off, that he was doing it at circle time yesterday too.

WTF?  I told her that he doesn’t “love” to take his shoes off.  He takes them off when hyperaroused and then tosses a FIT.  He HATES to take off his shoes in school.  It’s a sign of stress.  If he was doing that in circle time yesterday he was not having his greatest circle time ever.  Period.

I’m not angry…I’m disappointed that the school once again told us one thing and did another (shocker) and I’m disappointed that the staff is once again painting a rosy picture of a bad situation.  The new staff had no way to know about the shoe thing but the favored staff member did.  Why she didn’t point that out, I do not understand.  Part of the point of her being there was to share this sort of information.  So frustrating.

Monkey is there, in the new class, alone today.  Poor kid, this just sucks.  Tossed to the wolves AGAIN.

Positives…he does like the new kids in the classroom and is already seeking out interaction with them (duh, we keep telling them he’s social, they seem to be missing the boat here still), he participated in the movement activities during circle time and he was relaxed at pick up yesterday so Duhdee was able to chat with the teacher for a bit. 

OH!  We have a communication plan (promised LAST year but delivered yesterday, woot!) and we should have a sensory diet by the end of the week (also promised LAST year.)

OH!  We do really like his new teacher too, I think this *is* going to be a great classroom for him ultimately.


This is ponderous man. Really ponderous.*

I’m full of thoughts that go nowhere right now.  There are things going on, that I am only very tangentally connected to, that are bringing up a lot of fear and stress.  One of Duhdee’s friends passed away very suddenly last week leaving behind two kids and a wife.   My heart aches for them and my mind is full of “what ifs.” 

Life is feeling very precious and precarious right now.

*Tell me someone else remembers this random song from the 80’s?