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Thursday, May 28, 2009

Jaded

I think I am.

We had Ellie's Individual Education Plan (IEP) yesterday. I loved what was written. IEP's are very hard to get right in terms of balancing the laws of your state and the needs of the kid and having them make sense and be descriptive and succinct enough to be workable by many. This one was beautifully written with a genius that has written Ellie's IEP since she got to her current school. Each therapist as well contributes to this great foundation that was laid two years ago now. For that I am very grateful having witnessed a truly ridiculous and inappropriate, nonsensical that was produced by the public school. I know the difference from a good one that makes sense and is actually about Ellie versus one that is about everyone ideas about a kid with CP and brain damage who is NOT my Ellie. There is a big difference and her current IEP is brilliant in all aspects and especially in comparison. 

That said, I was also happy to make some specific additions. 

The additions I advocated for were made, sometimes right away, but many times only after I insisted several times like a broken record. That's fun feeling like you are being unreasonable when you know you are not but you are the only one willing to say what is unsaid by the group round the big conference table. Good times!

One addition I had to insist upon was the use of Intellikeys keyboard because we are using it at home. I feel I am still at odds with the school about Ellie using multiple modes to communicate.  Not once did the AT specialist use the word Intellikeys. I felt this was a sign of resistance and am not sure they will support the use of it by others. This really bothers me. This makes me think I need to check in and track it to make sure it is supported as much as the other modes this person prefers. I feel like my wishes for my daughter are not respected when I have to do this. I track conversations for a living and diagnose and intervene on group dynamics and leaders not towing the line for the team. I know what this looks like. It's a bummer to see it in this setting. In this case the person thinks they know best with a conviction that is unshakeable and unassuageable and isolated from dialog or external input.

Their argument is that Ellie's energy runs low at times and for those times she needs different ways to communicate. I get that, it's not a bad argument. My argument is that she has great use of her hands so let's optimize that and give her a chance to build up her stamina.  I have seen Ellie's eb and flow of energy. I get it, but I will not buy into limiting her because of it or using it as an excuse. Ellie LOVES to be busy doing different things. If she is mentally stimulated she will wake up for whatever it is. My argument is also around having the right physical set up for Ellie to succeed in. One of the therapists in the meeting noted that when Ellie had the right positioning her accuracy went from 30% to 70%. That is a big deal. They are tracking her accuracy so they should have the right set up right away. Everyone agrees on this in theory but it doesn't always happen. 

The jaded part comes in where I think I need to watch it closely. The part where I wanted things explicitly stated in the IEP. I hate being like that but after this year of struggle I feel like there is no safe place. Yes these people care about Ellie. But she is my responsibility for the rest of my life. That makes my concern far deeper and different from theirs. When they get defensive, I just feel suspicious. And that is jaded. Sigh. 

Maybe no parent can ever rest on their laurels (what are laurels anyway?). But sometimes it just seems like there a way too many plates spinning in the air for far too long. Way too many battles to fight and plans and 
strategies to implement and watch over. Ellie's worth it and then some. But still, I feel jaded and untrusting and that is not fun. I know I started out very trusting of life and with this feeling that people always do their best, because I do. 

Now I am jaded. 

What's next? Where do you come out on the other side? It's gotta be a place where wisdom resides - just not sure what it looks like yet, but looking forward to getting there...


11 comments:

Bird said...

I taught in public school for five years and while I didn't work with kids with physical disabilities, I was working with kids that had learning disabilities. To be frank, IEP's are good in theory, but rarely can one person implement an idividualized education plan for five or six different children.

What I'm trying to say is that yes, you will have to check in and make un-expected visits to the clasroom to make sure that everything Ellie needs is getting done. Parents who are pains get more for their kids.

Knowing all that i know about schools, I am undecided as to whether or not I'll let Charlie attend school. I mean, in theory I'm a huge fan of public school, but for kids with multiple disabilities, I'm not sure it's the best answer.

Kathryn said...

Yep - as I suspected. For the record - Ellie is not in a public school but an all special needs school that has a world wide reputation. Just goes to show you no matter where you are you can't ever let up on working hard to get what your kid needs.

Cheryl said...

My 504 plan in HS was so long that it couldn't possibly fit on the form you're supposed to use. My guidance counsleor had to type it up in word and then b/c you have to use the form she'd do my name, grade, etc on there and then write see attached. It was that long b/c we had to be that nitpicky. Otherwise nothing ever gets done. You're not jaded, just sadly realistic.

Anonymous said...

Laurels were a sign of achievement in Ancient Greece. So the phrase "don't rest on your laurels" means that you should always keep trying on not rely on recognition from past achievement.

I think it's a very apt phrase for parenting - especially parenting a child with special needs. One success means nothing if you don't keep fighting for more.

Kathryn said...

Cheryl - thanks for that. That is the approach I wanted and one other mothers have said. The repetitive - did you make sure you got that in the IEP? Because it's true - if it's not in there it doesn't happen. Like Bird said there are just too many and the parent that speaks up gets more for their kid. I hate it that it works that way but so be it.

Anonymous -thanks for that. I included the picture just for you and yes I agree completely.

Lexie said...

I am not a speech path but had to take a lot of speech path classes and work with kids who used augmentative communication. The number one rule I always had drilled into my head is that communication must be multimodal. Low-tech/no tech/high tech all need to be implemented. There is no ONE magic system that you can say this is what this kid will use 24 hours a day. So, to me, it makes total sense that Ellie uses the intellikeys (which may become her main gig at some point in the future) plus fingerspelling plus picture boards plus whatever else you all can find to work for her. If you've got her using it at home then be a broken record and get it done at school! You are making total sense here. If she gets tired, she can stop and go on to a different method or take a break. How hard is that to understand? She's what? Five or six? Of course it is going to take her time to build up an endurance and motivation to use it. Just like when a typical kid learns to talk, she will build up her vocabulary and willingness to speak (rather than grunt, cry and point) over time. We give typical kids that time, so Ellie needs that time as well.

You go, mama! You know on a gut level what is best for Ellie better than anyone in that room.

Anonymous said...

i LOVE that you're involved with the IEP process. i've taught preschoolers with disabilities for 5 years - which means i've "written" 60+ IEPs...and only once have i had a parent (i ask every parent) put in any input, and that was only when i asked them what else they'd like their child to work on.

and i say "written" b/c with our IEP program, everything is a checklist, with some options to customize goals/equipment. i'm assuming most IEPs are like that now.

ellie is very lucky!!

Catherine said...

Kathryn, you are on the right track. Be assured that ANY child that does not fit into the "one size fits all" model does not get his needs addressed unless the parent makes sure that it is happening. I used to make worksheets for the teachers that had three main things that I wanted done during the school day and three minor things, and had the teacher check them off. I would hole punch them and put them in a binder and make a book out of the process. This was for a child without an IEP, and without handicaps. Just some issues and habits that needed focus and some behavior modification. Without tracking it just did not happen.

In all fairness, the teacher had a lot of things that had to be done for a number of children and still had to plow through the curriculum. But with a written guide that required feedback, it was done. I also made it a point to drop in and watch the class.

I am going to enjoy watching this sweet girl grow up! Keep on it, Kathryn.

Catherine said...

I'll be right there with you watching. The only people in the world who think they know BB better than me are the school folks . . . the hubris. It's the school commnuity and not the medical communuity that proves most arrogant . . . go figure.

Jacqui said...

I only just survived my first IEP recently - or so I think. Does imagining smacking the special ed rep in the mouth count as surviving?

Kathryn said...

Jacqui, that totally qualifies as surviving! If you had actually smacked them then you would have failed. Restraint is the greater part of valor etc...

Miserable huh?! They have gotten easier. The first one was just so shockingly bad in our school district. But now they are much better though still to be approached gingerly. I hope you got Moo what you wanted for him!