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. 

D’oh, Monkey gets a shiner!

Melissa

Dang, such a good morning and now this, lol.  Monkey was on the playground playing chase with another student.  He was running and looking back at the boy chasing him and he hit a pole.  Oww!  He didn’t even react, the aid didn’t notice anything was wrong until he ran by her.  She thought he had a woodchip under his eye but it was a bloodied bruise, lol.  The kid is a tank. 

He’s home with Duhdee for some extra TLC and maybe some ice if he will cooperate. 

We have a classroom *happy dance*

Melissa

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!

Melissa

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 😉

What am I missing?

Melissa

You’ll have to forgive me for obsessing over the IEP situation.  This is only our second IEP so I still don’t know what normal is but our advocate assures us that this is a very surreal situation and she’s written hundreds so I believe her, lol.

When we wrote our first IEP the team chair tried to shoehorn us into a substantially separate classroom.  We toured several and we could not picture Monkey in any one of them.  His level of functioning was far above the kids in the rooms we were shown.  We worked very hard to convince the chair that Monkey could succeed in an integrated classroom and we were successful.  His EI team were very strong advocates and were convinced he would be successful.  We recognized that it was not going to be easy.  The team worked very hard to write an IEP that provided the support he would need to meet the goals we had set for him.  The goals were challenging.

Monkey was not given the supports that he was supposed to receive and yet he met all of his goals for last year.  Isn’t that amazing?  It amazes me!  To think that he had no sensory support for the entire year, was placed in a very busy, fully integrated classroom and he STILL met all of his goals. 

So, given that they fully admit he was not given the supports he was entitled to, that they admit that he could benefit from additional supports, that they acknowledge that he met all of the goals that were set for him, that he is in the least restrictive environment…tell me how do you say the best option is to change his classroom to a more restrictive one? 

Are we nuts to think that they should provide the supports he was entitled to under his IEP, that they should provide the supports that they believe would further improve his skill acquistion and that they should do this in the classroom that he is familiar with and has already proven successful in?  Are we? 

Here’s another one for you, are they nuts to tell us that changing the classroom to more restrictive for a year and then (possibly) changing it BACK to the classroom he’s in right now is really the best option given the fact that they are concerned that changing schools (our idea) would cause regression?  Why should we work to keep him in a school that is less than ideal if we’re changing everything else (schedule, peers, staff) about his day?

ARRGH!

Would you believe me if I said we’re not done?

Melissa

Seriously.  We are going to tour two substantially separate classrooms on Monday at the school’s insistance.  This is, as they see it, the next necessary step in the discussion.

Oh, I so wish I could share some of the gems from today’s meeting.  Some were insulting (to their own staff even) and others were umm…outside the law.  That’s a good way to phrase it.

We left the meeting more convinced than ever that we’ve chosen the right path.  I made sure I pointed out to them that we have not argued with their observations, their suggestions or their goals we are just having an honest disagreement with where and how to implement their plan.  I recognize their expertise in education.  What we are insisting on is that they recognize ours and recognize that Fragile X is not like anything else they’ve dealt with before.  It’s a very unique combination of strengths and deficits that you don’t see in any other syndrome or condition.

So, we’re in a hold pattern.  He remains in the current classroom, they continue to implement the portions of the IEP that are continuing (improved home/school communication; sensory diet)  but overlooked last year and we will keep meeting until we either agree on a placement or we move to the next level and invite others in to resolve what we cannot.

Today is the last IEP meeting.

Melissa

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 😉