School

I’ve been chewing over the information that was shared at the IEP meeting last week and trying to make some decisions.  Trying to pick a direction to move…it’s not easy being the grown-up sometimes (heh, please overlook the fact that I do not always exactly act “grown-up” and tend to throw hissy fits that put my 5 year old to shame…just for now.  ‘K, thanks.)

Two years ago we went to the same sort of meeting and we heard such amazingly, wonderful things about our special little nugget…only for everything to go straight to hell 3 months later.  It was a mixture of me hearing what I wanted and the teacher … really, I still don’t know what her motivation was.  But, hey, I’m being a grown-up today so…bygones. 

What I’m getting at is that, since that meeting, I’ve tried very hard to hear what the teacher and therapists are telling me…even when I am having to read between the lines at times.  So, please understand that the following is what I am fairly sure I heard at the meeting…but maybe I missed something between the lines…it happens.  Which is why people should just say what they mean and not try to dress up what we all know is a less than ideal situation…oops, was that preachy?  (and also hypocritical because we all know “less than ideal” is not exactly what I mean…sorry.)

So.  What I heard…

1. He has met his OT goal of holding a pen in the proper tripod position for more than 5 minutes at a time.
2. He has met his OT goal of cutting a straight line using “regular” scissors and has moved on to cutting out shapes (circles in particular, he has done this successfully one time but it was a very LARGE circle and not quite what they’re going for…babysteps.)

Both of these are very important because it demonstrates that he is gaining significant strength in his hands (those loose FX ligaments are most troublesome in his fingers.)

3. He has met his PT goal of throwing and catching a ball for whatever distance they’d set.  He’s now working on dribbling. 
4. He has met his PT goal of moving through multi-step obstacle courses with support.  He’s working on doing it independently.
5. His tumbling and jumping are better, he is now working on assisted sit-ups.

His PT has also noted that his upper body strength has increase significantly.  He needs to be strong in his trunk before he can really focus on working his fingers as well as he should.

6. He is able to sit at a table and work on an activity for more than 5 minutes, with support.  They’re now working on increasing his independence.
7. He is able to sit at a table and work on a preferred activity for … well …forever pretty much.
8. He follows the classroom routine with minimal support.  They’re now working on increasing his independence.
9. His assistive tech device…VantageLite…is in process though there are some interesting issues regarding funding.  We’ll get it worked out but we may be needing our advocate to make a call or two.
10. He loves his peers and will do things for or with another child that he will not do for or with a therapist.

Areas he needs to work on…

1. Moving beyond a one step social interaction.  He will take a toy or give a toy but he won’t continue the play routine beyond that.  He will initiate a conversation with a classmate by greeting them or commenting on something the classmate is doing but won’t continue the conversation beyond that.
2. Independence.  He still needs an adult to keep him on task.  He is, by their own estimation, cognitively and physically capable of performing all the classroom tasks but his mind wanders.  Especially if it’s a harder task.  He’d rather watch the other kids work than work on something that tires him physically or mentally.
3. Eating.  He can and does eat…a lot.  But he needs to be reminded constantly to use a utensil, use a napkin, don’t overstuff.  This is a biggy because of the social ramifications of not being able to eat in a group in a socially acceptable way.  Kids notice.  Older kids will comment. 

We have finally gotten the go ahead to start Therapeutic Listening with him.  The TL Therapist and Monkey’s OT will introduce it in the classroom and pick a goal to work on.  If it works for him we’ll expand it to home and we’ll buy him his own equipment.  We may end up buying the equipment ANYWAY if they can’t locate it within the district.  It’s been almost a year since we asked about this…I’d like to get going!

We also asked about ADHD since we’ll be visiting the developmental pediatrician this week to continue the discussion from last fall.  They can’t tell if he “can’t” focus or “won’t.”  Which is fine, that’s the Dr’s job 🙂  Now hopefully he’ll have a magical answer for that and the sleep b/c OMG, the lack of sleep makes me crazy.  And I don’t need anymore crazy, thank you very much, am full up with it already.

If it is noted that a child can learn the material and can perform the tasks but isn’t always motivated to perform said task through to completion…that’s not a, not sure how to put this…it’s not a comment on the child and the appropriateness of the goal or placement but an indication that the teachers/therapists need to come up with new ways to motivate the child, is that right?

This afternoon Duhdee and I will be attending an IEP meeting.  Well, actually, it’s what everyone else would call a parent/teacher conference but we live in a special world where everything is governed by our IEP and federal law.  Awesome. 

So, a parent/teacher conference, no big deal!  Right?  Right.  So why do I have a sick feeling in the pit of my stomach?  We haven’t even started kindergarten and I’m already shell-shocked by the entire IEP experience/process. 

This should be fine.  We’ve read the progress notes, he’s doing GREAT!  He’s a magic little being who charms (and manipulates, in a charming fashion, of course) everyone he works with.   Even knowing what we should hear at the meeting still leaves me flashing back to that meeting two years ago when we heard all the same things only to be told 3 months later that none of it was exactly true and whatever was true didn’t matter…no one could handle him or be expected to handle him. 

*Sigh*  I’m going to go buy some cookies and show up with a smile…hopefully I manage to get there without throwing up.  It’s all going to be fine, I wish I could convince myself of that though.

This is sad, sad, sad but Duhdee and I are already gearing up for some more fights with the school system.  I wonder at what point we will give up and just move.   We don’t want to move.  Five generations of Duhdee’s family have lived in this house.  We like our neighbors, a lot.  We like the neighborhood, a lot.  We just may not have a choice.

The “impossible” challenges we need to resolve before the end of the school year are to convince the district to create an integrated kindergarten classroom and/or change their policy on 1-1 aides (“We don’t do them,” is a direct quote.  Our advocate finds that rather amusing.)  If we had sent Monkey to kindergarten this fall on schedule he had two options 1. mainstream classroom with minimal support or 2. substantially separate classroom, possibly with integrated “specials” (gym, art, etc.)   Neither of those would have been appropriate. 

Neither of these changes are really impossible, of course, we have a new superintendent who knows the benefits of both changes…he’s seen them work in his last district.   But there is a whole layer of bureaucracy built up in this district and while most are genuinely good and likeable people there are people in positions of power that are downright hostile.  One in particular causes a visceral reaction, the very sight of her creates so much anger in both of us…sigh.

Our son’s preschool teacher wants us to stand up and push for these changes but the last time a teacher used us as an example for needed changes it backfired big time and almost cost Monkey his placement.  If we start this fight we will have to see it through to the end.  It’s going to cost money…maybe a lot of money if we have to hire an attorney.  It’s going to cost time, guarunteed to be a lot of time (we’ve yet to write an IEP with the district with less than 12 hours of face to face meeting time.) It’s going to cause stress, which is not beneficial to anyone.

I know it’s needed.  I just hate that it has to be us.  I don’t want to have to fight over everything.  I’d just like something, for once, to be simple.

Yeah, yeah, I know…suck it up 🙂