Life with Fragile X Syndrome

HE DID IT!

Melissa

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!

TGIF.

Melissa

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!

Melissa

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.

 

Fantastic dropoff this AM!

Melissa

Monkey did so well, we’re so pleased!  He was able to get to within a foot of his classroom door before he sat down to protest.  Once Duhdee removed his jacket Monkey decided he didn’t need waterplay to start the day, he went straight to choices*!  We were in and out in less than 5 minutes.  We left Monkey looking at acorns under magnifying glasses.  He even told us “look” when he picked up the magnifying glass, lol.   Woot!

After the dropoff we stopped at Staples to finally pick up the calendar we’re going to use for Monkey this year.  It looks like this.  We’ll use the 30 day side and put up pictures of either home or school depending on where he’ll be that day.  We’ve never bothered with this sort of thing before but I think this will help his morning anxiety.  *fingers crossed*

*8-9:20 is free play in Monkey’s class.  There are 3-4 tables set up, each with a different activity.  This morning it was painting, bubbles, stringing beads or looking at acorns under a microscope.  Yesterday it was painting, gak or puzzles. The kids have to pick activities so we just call it “choices” since we never know what will be set up.

A bit sad.

Melissa

Since we signed the final IEP yesterday we now need to transition Monkey into a new classroom.  We know the classroom he is in now is not ideal.  We believe that the classroom he is switching into will be better for him in the long run but there is a bit of sadness in making him change rooms.  He’s been in his current classroom since last fall.  There was some turnover between last year and this so making the change in early September really wouldn’t have been a very big deal but now he’s had a month to settle in and make friends.  I feel like an ass making him change. 

This morning he decided he wanted to choose a different activity rather than bubbles.  We sat to play with “bocks!” (blocks) for a bit and then, after we cleaned up, he went to the booknook to sit with his bears.  One of his little girlfriends saw him sitting there, chose a book, sat down next to him and handed it to him.  He took it and we waved good-bye, he was settled.  I think he’s really going to miss her, he’s been helping her settle in since day 1 and now she is returning the favor in the mornings.  *sigh*  Poor Monkey.

Morning drop offs continue…

Melissa

heh.  I won’t lie, I sort of wish they wouldn’t.  Monkey is still having some trouble but it is getting better.  We have established a routine and we’re using Tracy and Mouse’s dialogue technique to help each morning on the way to school and it does seem to be working!

I told Duhdee yesterday that the morning ride to school is like Monkey’s very own children’s program.  We mostly talk to each other in goofy, excited voices (but not too excited) while he is absorbing it.  We practice deep breathing whenever he starts whining and he’s started taking deep breaths along with us to calm down.  We talk through the step by step transition.  This morning I broke down giggling because it’s really just…GOOFY.

Umma:  “When we get to school today we’re going to go THROUGH the door!  Dooooowwwn the ramp, Monkey can run if he wants!  Then Mommy is going to JUMP* and then we’ll count the lights!  One, Two, Three, Four, Five, SIX!  Then Daddy will help Monkey through the door if he needs help.  Then we’ll take off his jacket and we’ll play with the water!  And BUBBLES!”

Duhdee chimes in with comments during my schpeel.   THEN it’s Duhdee’s turn to see if he can remember what I said!  And he repeats it while I chime in.  Duhdee gets a high five for remembering all the steps!

I’m so glad no one can hear us, we sound INSANE 😉 But you can’t argue with sucess.  Next week we’re going to add the seventh and LAST light to our countdown…it will place Monkey only inches from the door which will be a huge step for him!

*There is a double door at the end of the ramp and I JUMP to touch the top of the entrance.  Monkey thinks it’s really funny.  So do the other parents and the staff *blush*  Must be love.

Our vision.

Melissa

When the IEP team was discussing the vision statement for the next 5 years we had comments to insert but we largely let the rest of the team write that section because Duhdee and I are not 5 year planners.  Duhdee and I are big picture visionaries.

Not long after Monkey’s diagnosis there was a message that came across the Fragile X listserve from a parent of a much older man with Fragile X.  She was thinking about leaving the listserve because her son was no longer in school and many of the concerns that the other parents were facing simply didn’t apply.  She wasn’t sure she had much left to offer.  Her (potentially) parting message focused on keeping the big picture in mind.  As she looked back she wished that she had spent more time thinking about how she wanted her son’s life to look as an adult and not get so caught up on the details involved in day to day school life.  Her message really spoke to me and it has greatly affected how we view school and life in general.

We have a general idea of how we want Monkey’s life to be.  We want him to know and to feel love.  We want him to be as independent as he can be.  We want him to feel powerful and valuable.  We want him to feel sucessful.  We want him to be happy.  It’s a pretty standard parent vision really but when you think about what it means to have a disability in this world you start to see how these are really big ideas.  I have family members with intellectual disabilities who have not had the chance to experience these things.  They’re not miserable, by any stretch of the imagination, but they could be so much more and so much happier if only they’d had the benefit of all that we now know.

So, when the time comes each year to write the 5 year vision statement we insist that they include two statments that speak to our long term vision but we leave the small stuff to everyone else.  We feel that while there is much for him to learn (and we are committed to helping him learn it) the core values, strength and happiness are going to come from us.  We can’t ever want to lose sight of that.

An interesting drop off this AM.

Melissa

Duhdee and I really need to get better at being early for drop off.  We have a 5-10 minute window that is the ideal time.  It is between the time that the doors open and the arrival (en masse) of the general population.  We tend to get there just when everyone else does so the classroom is in an uproar.  It’s just not ideal for getting Monkey to walk in and settle.  We need to try to beat the rush!  Maybe tomorrow 😉

Just as we were getting ready to leave Monkey’s teacher stopped us and said she wanted to talk to us.  The team leader had told her about the change in Monkey’s classroom placement and she wanted to speak to us about the change and about what maybe could have gone better.  She clearly and sincerely cares about Monkey and despite our anger at how this all has unfolded we’ve never questioned that.  We’ve never questioned the classroom staff’s affection for Monkey and we’ve never had a complaint about how they’ve treated him.

She said she has spent a great deal of time thinking about the entire situation and she said she is treating it as a learning experience for her.  She said that she may have done us (and Monkey) a disservice by giving us only the glowing reports and not letting us know about the challenges she saw during the day.   We admitted that we had felt taken off guard by the June meeting.  It was a really positive talk.  We let her know that we truly appreciated that she’d taken the time to go to the Fragile X seminar last month.  We shared a hug. 

I think this was all a tremendous learning experience for us as well.  We were too passive about Monkey’s IEP.  We wrote a great IEP and we did not insist that it be followed.  I think we were more concerned with team building than we were with making sure Monkey’s needs were being met.  We need to find a way to do both.  We need the positive relationship with Monkey’s teachers and therapists and we need to make sure he gets the supports he needs to succeed in the classroom.  We have to admit that keeping him in an integrated setting is going to be an uphill battle.  We have to acknowledge that the only way we can maintain that setting for him is by being strong advocates for him.  He will need a lot of support if this is going to be possible and I think Duhdee and I are finally catching on to exactly what this is going to require of us.