The Track to Nowhere

Monkey has lately been showing interest in assembling his train tracks all by himself.  This morning he built what I told Duhdee was obviously a pork barrel project.  We shall call it the “Track to Nowhere.”  It was a 6 piece section of straight track that he moved around the house wherever he wanted to go.  Pretty clever, actually.

He was very proud of it and when I asked him to show me his track he gladly did so.  It required a little bit of repair but he can always use the extra fine motor practice.

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To minocycline or not.

OK, folks, did you all see this post on Dr. Mike’s blog?  We are seriously considering trying minocycline with Monkey.  We’re holding up the risk of potential teeth staining to a potential for improving Monkey’s overall quality of life.  It’s not normallly given to kids under 8 but they’re giving it to kids as young as 3 in the autism trial.  Monkey is nearly 5.  I’ve asked the head of the FX clinic in Boston his opinion.  None of the families in this area have tried it yet according to the clinic though.

I guess I need to talk to our ped. to see if she’d even be willing to consider it…she may not be comfortable with it.

If anyone has a crystal ball that they’d lend to me, I would surely love to borrow it.

Umma’s getting BRAVE.

Have I mentioned potty training lately?  I don’t think I have since before Christmas.  The reason?  We’ve been lazy, plain and simple.  It would probably seem logical to most people to spend time focusing on potty training when you had a nice long chunk of school vacation to work with but, well, we’re not most people I guess!  We were just so busy running around and there was no real schedule to anyone’s lives so we just decided to ignore the potty training for a while.

Monkey has been staying dry at school for the last few days so that, along with the appointment we had today with the potty training specialist at Children’s Hospital, prompted me to decide this AM that we were not going to wear a diaper today.  Way to plan ahead, right?  Duhdee looked at me a little funny but he went along with the “plan” (as if you could call a sudden wind of inspiration a plan, heh.)

I told Monkey about 15 minutes before we left the house that we were not going to wear a diaper today and he went along with the “plan” too.  Awesome.  He picked out some SpongeBob tightywhities (he prefers boxers but they’re too bulky under his clothes for comfort) and we were off.

When we arrived at Children’s I took him straight to the bathroom.  Monkey let me know he did not have to go so we got dressed again and went to play while we waited to be called.  Just before we were called Duhdee took Monkey to try again and was shot down.  I let the specialist know we were in underwear for the first time out of the house and she was very pleased.  Our appointment lasted about 1/2 hour and while she was writing up the note for us to share with the school Duhdee took Monkey to the potty again. 

When they came back Duhdee was happy to report that Monkey had gone!  Yay Monkey!  Then he told me that Monkey had first requested that Duhdee pee by pointing in the direction of Duhdee’s…uh…”equipment” and telling him “pee!”  As soon as Duhdee complied, Monkey took his turn, lol.  Awesome.  The specialist was so excited that she gave Monkey TWO matchbox cars! 

Duhdee and Monkey dropped me off at work and were going to return home and then make a run to Costco…all sans ‘per.  I haven’t recieved any e-mails or phone calls telling me that we’ve had an accident so I’m hoping this means that the extra set of clothes (and diapers) go unused for the remainder of the day.  *fingerscrossed!*

In non-potty related news…

Monkey let them do his height and weight today!  He hates this for some reason and always puts up a fuss but he was a champ today.  He stood on the scale several times while it hemmed, hawed and errored and they got a weight.  44 lbs, a solid little Monkey if I ever saw one.  Duhdee forgot to give me the height reading, lol. 

He was rewarded with a Cookie Monster sticker.  Actually, he was technically bribed with it since they gave it to him while they were still waiting to get a reading but I’ll call it a “reward” anyway.  A pre-emptive reward. 

He kept the sticker with him and during the time we were waiting for the specialist to write up the note Monkey turned to me, holding the crumpled up sticker, and said “trash” as clear as could be and started looking for the trash can.  Poor Cookie.

The right classroom.

I’ve been going on and on ad nauseam over the amazing progress Monkey has made lately.  We are so proud of him.  I’m not sure I’ve given his teachers as much credit as I should because they are the main reason he has progressed so far, so fast.

On paper, the classroom he was in last year and the classroom he is in this year are not that much different.  They’re both integrated classrooms, they sit side-by-side in the same hallway in the same school, they have the same flourescent lighting, they’re across from the noisy, smelly school cafeteria.  There are 5 fewer kids (2 fewer on IEPs and 3 fewer peer models) and 1 additional staff member in the current class so the ratio is much lower which has made all the difference. 

In his previous classroom a lot of effort was spent managing the classroom.  The room was always busy and at times it bordered on chaotic.  It was not entirely the fault of the staff, they had a challenging group of kids.  They were in over their heads and their requests for additional staffing were denied.  The lead teacher was also a bit disorganized and it showed.  She often looked frazzled and you all know how much our kids pick up on these cues!

His current classroom is so different.  There is a picture schedule available in the classroom at eye level.  They discuss the schedule daily.  They consistently remove the picture of the current activity when they are all done and the kids know what comes next.  Every. Single. Day.  Every. Single. Transition.  There is a consistency that was somewhat lacking in the last classroom.  The teacher in this classroom is unflappable.  She is calm and warm every time we see her.  Even when she is correcting a student her voice is calm and she remains visibly relaxed.

Because of the lower student/staff ratio the kids get a lot more one-on-one time.  It frees up a staff member to focus on the sensory needs of the kids in the classroom as needed.  Monkey is the only kid with Fragile X in the room but he is not, by far, the only kid who needs a sensory diet.   Monkey is consistently wearing a pressure vest.  He is getting his brushing and lotion time (basically deep pressure using moisturizer which he loves.)  Everything is scheduled and predictable.  It took some time to get the right combination but now that they’ve figured it out he’s able to stay calm and regulated all day long. 

Another big difference between the two classrooms is the lead teacher’s philosphy.  In his last classroom if Monkey was having a difficult time consistently during a portion of his day they put in interventions specifically geared towards him at those times.  In this classroom Monkey was showing consistent difficulty during a portion of the schedule because they had two really challenging activities scheduled back-to-back.  Instead of pulling Monkey aside between those activities, as we suggested, they changed the schedule. They moved things around just a little bit so that he was not moving from one challenging activity to the next and needing to be pulled aside in between. 

The teacher wanted him to remain integrated into the group and not need to be singled out or pulled aside.  A few slight alterations allowed him to stay in the group as it moved from activity to activity without being pulled aside for sensory time of some sort.   That’s just a basic philosophical difference between teachers.  I don’t think either one is “right” or “wrong” necessarily it’s just differnt view points and I can see both POV.  As a mama, though, I am very appreciative of this flexibility.  Of course the other kids shouldn’t suffer for Monkey’s benefit but if a slight change (modification, to use the lingo) like this is possible without doing harm to the other students while benefitting another…I’m all for it.

Today’s word of the day…

according to the little screen in the elevator at work is…

Adj. 1. elysian – relating to the Elysian Fields
  2. elysian – being of such surpassing excellence as to suggest inspiration by the gods; “her pies were simply divine”; “the divine Shakespeare”; “an elysian meal”; “an inspired performance”

glorious – having or deserving or conferring glory; “a long and glorious career”; “our glorious literature”

Here is hoping the day plays out in a way to deserve it.

*BLISS*

It seems like the good week at school might not have been a total fluke as I had feared.  The little guy was giggling and smiling at drop off this AM.  He was half dragging Duhdee down the ramp to his classroom on the lower level of the school.  He only got 3 M&Ms this morning, he was moving so fast I couldn’t keep up.

He checked into class, escorted Duhdee to the “Choices” board and didn’t even think about it…he grabbed the “Block” PECs image, made his sentance (“I want to play Blocks”) and raced off to join his friends in the blocks area.  He forgot about us as soon as he finished his sentance.  Duhdee and I were able to stay and chat with the teacher for a moment and then dance ourselves out to the truck to start our day.

*BLISS*

*CRASH*

Monkey and I have been playing a new game this week.  I will say, “Let’s fly like an airplane!” and he’ll put his arms out (sort of) like wings and we fly around the house making airplane noises.  After we played this a few times he started instigating the game by walking behind me as I did other things and putting out his “wings” and making the engine noise.

He has now added a new step to this game…we now fly around the house and end at Umma and Duhdee’s bed.  We throw ourselves on the bed and say “CRASH!”  Sometimes we have to crash 2 or 3 times, lol.   Crashing is very funny.

**Edited to add** and now his TRAINS are crashing.  We’ve created a monster!