The best IEP meeting ever.

We just had the best IEP meeting ever.  Of course, given our history with these things, that’s probably not saying very much, lol.

The biggest issue about the meeting was the time.  Duhdee told me 2:30, it was actually scheduled for 1:15.  At 12:50 he called to explain the mix-up which left me NO time to get there.  I ended up running out of my office, e-mailing co-workers from the elevator and grabbing the first cab I could find.  He didn’t want to drive me there, it wasn’t far enough for his tastes!  I’ve never heard of such a thing…it’s not like it was a $5 fare, it was a $34 cab ride to another city!  ANYWAY.

The meeting went very well.  It was the annual review and it unfolded just as it should.  We did ask about the Therapeutic Listening and we’re still going to push for that but we’re going to pay for the equipment.  He would otherwise be put on a waiting list for the equipment that the district already owns as we’d been told before…we don’t want to wait 🙂

We did not need to bring up the voice output device, the Assistive Tech specialist had already spoken to the ST and the teacher and had decided that he needs one.  She is currently borrowing the Vantage Lite from the company and is going to ask to keep it for a few weeks longer to try it with Monkey.  She doesn’t expect any issues so that’s the device we’re shooting for.  She said she wants to try to get our insurance company to pay for it.  Ahahahahahaha *cough*cough*snort*hahahahah.  *Ahem* We wished her the best of luck and told her we’d get her whatever she needs from his pediatrician, etc.  She acknowledged that the school will be responsible if the insurance company won’t pick up the tab but this way we would own the device and we could take it with us if we leave the district.  If the school buys it we would have to give it back.  So…we’ll try this route.

And that’s it…no controversy, no surprise issues.  He’s doing well, they all see it.  They’re impressed with the gains he’s made and see that he clearly can do better.  Several times they took pains to acknowledge the fact that cognitively he is doing really well.  They can see that there is so much inside him he can’t yet communicate clearly and that’s really all we’ve ever wanted.   We don’t want them to look at where he is and think that this is the best he can do…we want them to look at him, like we do, and see how much better he can do.

IEP fun.

We have an IEP meeting scheduled for tomorrow.  It is his yearly evaluation.  We should discuss his progress this year and set new goals for the next year.  Simple, straightforward.  So why, why, why am I going to potentially open not one but TWO cans o’worms?

1.  Therapeutic Listening.  His OT and the TL trained OT have said he’ll benefit but the school claims no money for equipment.  If we add it to his IEP the school will have to figure it out BUT I have no idea how the team leader will react…we don’t know her and we don’t have a clue how she runs these meetings.

2.  Voice Output Device.  He has assistive tech. written into his IEP and he’s been getting those services all year.  He does NOT yet have a voice output device however and we’re going to request one.  I don’t see how 1 hour a week is sufficient for him.  Granted he is getting more verbal but we know there is more in his head than he can express.  We want something he can use in school and at home.

They’ve balked at the few hundred involved in the TL…I can just imagine how they’ll react to the assistive tech request.

*Sigh*  Do we never learn?

Are you ready to rrrrrrrrrumble?

We dropped Monkey off at school this morning and the teacher, oh-so-casually, mentioned that our invitation to his annul IEP review meeting was in his box.  Joy.

As soon as we’d punted Monkey into the loving arms of his teachers we huddled over the note in the hall.  It said there was an attendence sheet attached but there was NOT!  Mild panic…I wasn’t leaving until I knew who would be there so I sent poor Duhdee back in to ask for it. 

He came back and told me that all of Monkey’s therapists would be there as well as the teacher and the classroom staff and…dun dun dun…the school psychologist.  Before my eyes were fully filled with horror Duhdee told me that the teacher had quickly added that it was not the same one who made our lives hell at last year’s marathon IEP meetings.  Phew.

So Duhdee and I are actually debating about whether or not to invite our Ed. Advocate.  Do we never learn?  We’ve gone to exactly two meetings without her and we’ve had exactly two meetings blow up in our face.  In our defense, we have all already agreed that he will stay put in his current classroom for another year. 

What could possibly go wrong?

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.


A bit sad.

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.

Our vision.

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.

We have a classroom *happy dance*

What a relief!  We saw the final of the three classrooms the school wanted us to consider this AM and it is perfect.

It is an integrated classroom but with a lower student-teacher ratio.  This class will never have more than 11 students (5 IEPs, 6 typical) where his other classroom can have up to 15 students (6 IEPs, 9 typical.)  Both classrooms have 3 staff members.  Right now the classroom has 9 students and is much quieter than his current classroom.  He will have the same therapists with one exception, he will have a different SPL provider but she was new anyway so that’s fine.

The classroom runs on a substantially separate schedule so it will be extended by an hour each day over his current schedule and it runs for 11 months so he will not need to go to another classroom for summer services.  He will be with typically developing peers for the exact same amount of time but have 2 hours a day with more focused time (right now he gets only an hour of focused time.)

The teacher is fluent in ASL, she has a master’s degree in deaf studies! 

They’re really concerned with getting the transition right so we are thinking we’ll continue to drop Monkey off in his current classroom for a period of time and that one of the class aids who he is very fond of will take him next door (the new classroom ADJOINS the current one) to his new classroom for periods of time until we can make the final transition.  One of the staff members from the new classroom will go fill in in the other class so the staffing level is not disrupted.

The school is hiring another staff member who would float between these two classrooms depending on need and that person would most likely be largely responsible for implementing the sensory diet.

Hmmm…I think that might be it but it really is the best of all worlds.  The team leader (who was showing us the classrooms) was *very* relieved as are we.  I think they thought we were determined to keep him in the same exact room.  That would have been ideal given the level of comfort he has developed with the staff there but we were open to something different as long as it had typical peers and he received the sensory services he needs.  Phew.  I think we’re all pleased with the end result! 

We’ll get the IEP tomorrow.  She asked that we consider it a working document and if we have any issues that we all meet again to discuss changes rather than reject it.  We can do that!  We actually like his IEP only the placement was giving us fits. 😀

We toured some classrooms today!

We toured two classrooms and peeked into a third.  Both classrooms were substantially separate classrooms.  We saw one of them last year and rejected it and the other was set up exactly like the second classroom we rejected last year!  So that was productive.  The third classroom was an integrated classroom which we just peeked into, we had seen that one before as well. 

I had told Duhdee I was not going to get into discussions about placement today.  I failed.  Heh.  I was emotional but I was not angry.  If she had not kept tossing in comments about how these classrooms would be less distracting which “we are all concerned about, his distractability,” I might have been able to hold my tongue. 

I reminded her that WE  (Duhdee and I “we”) are not as concerned about his distractability so much as his unaddressed sensory needs and the fact that his sensory needs are the same regardless of the classroom.  That WE are not comfortable changing his placement until they’ve provided him with the support that he was entitled to last year.  That WE are primarily concerned with meeting those sensory needs and maintaining the integrated placement.

It really does seem that we (team “we”) are not even close to being on the same page.  Oh and (HAHA!) she tried to claim that giving him access to a chewy tube last year was meeting his sensory needs.  Even though it was used reactively and not proactively.  Even though we had to FIGHT with his teacher to let him have it and that they definitely did try to restrict it.  Her goal is to eliminate it which is NOT on his IEP and, realistically, not likely to happen.  Monkey appears to be one of those kids with FX with very strong oral sensory needs.

So, after hearing our reaction to the classrooms, she has ONE more classroom to show us tomorrow.  *Twitch*

Their plan now is to have him split time between the two placements…I’m not sure that I’m making that part clear since I’m really focusing on the amount of time he’d be substantially separate.  They want him to be in both a substantially separate classroom and an integrated classroom (some of the time.)  So far the schedules are so different that Monkey would effectively be in a substantially separate classroom for almost the entire time if you include all his pull outs for services and exclude snack and recess.  So his period of actual learning time with typical peers would be very, very limited and we’d be adding in another transition…and you all know how the kids love transitions!

Oh, and, the classroom that they want him in…is considered “transitionary” so the goal is for those kids to move into an integrated classroom.  Sounds great except that they don’t always (we know of one little boy who was put into a transitional classroom last fall and ended the year there) and there is no criteria.  The kids move when the teachers feel they are ready.  I guess we just need to trust their judgement on that…and if that were the case…we’d have been there last year, lol.  I guess we’re just not trusting enough 😉

Today is the last IEP meeting.

Part 3 of 3.  We need to discuss the information from the Fragile X conference, check in on the team’s progress in putting together a sensory diet, behavior plan, speech plan (formalizing what forms of communication are used for the entire class and at what times they’re used) and communication plan (really a data gathering tool so we can fine tune the sensory diet, behavior plan and track progress) and then discuss placement.

We met with our ed. advocate last night.  We have a very strong idea as to what the school is going to suggest and perhaps insist upon.  We are prepared.  DEEP BREATH IN….DEEP BREATH OUT.  We’re going to be fine 😉