Tuesday, April 30, 2013

Evals & IEP's... banging my head against the wall

I sat for a few moments filling out a behavior analysis on Abby.  It was designed for 5-12  year olds, yet they gave it to me to so I could circle all the zeros.  She cannot do any of it.  Is it formality? I try to convince myself it's not an evil, unfeeling attempt to spite our lives, but rather an annoying requirement to have on file, yet I finish it and I feel... crappy.  I think back to the conversations I've had during the past few months with those who have to do her evaluations every three years.  It's painful at best.  My sarcasm is often not in check as "professionals" ask me questions about my Abby that are nothing short of ludicrous.

I actually had a real live conversation with one teacher who asked me for Abby's transition plans.  Yes, you heard me right!  Her transition plans... AFTER HIGH SCHOOL!!!  Seriously, we aren't sure what we're doing next week, month, year; let alone have plans worthy of sharing or working towards for our twelve year old.  Do you have after school plans for your typical child?  Come on... my child requires a team to develop an education plan for each and every year, yet you want a transition plan?  Before you message me, I know it's legally required of the teacher to ask.  I realize many parents don't thing through these things and it's helpful to have some perspective, perhaps; but I still didn't like it!  If that wasn't enough crazy for one conversation, one gal proceeded to inform me that Abby's goals will be included in her IEP (Individual Education Plan) as if she were writing it.  It will be written as if she were writing it.  Stop the crazy!  Abby functions like a two year old.

I sat in my chair in utter bewilderment trying to figure out what is happening.  I'm brought back to our annual IEP "team" meetings.  Where did this idea go wrong?  What happened to the team approach?  We're anything but teammates.  We're more like opponents... the school versus the family, hoping for good sportsmanship at best.  We walk into the room and exchange pleasantries, much like shaking hands with the opposing team before tip off, in a show for the fans.  We are promising to not hit below the belt and hope our team brings their "A" game & show up wearing protective equipment.  We weakly acknowledge our side and pray against accidental friendly fire.  We're all worried about what we say or don't say and what it will mean.  We know from experience that saying things like "we'd like to keep Abby in the same classroom next year" doesn't mean holding her back a year.  Or if we bring an advocate or legal representation the administration who can actually make decisions will show up and be kind.  If we try to give it a go ourselves we'll probably suffer some cheap shots or "misunderstood" consequences.

I wonder where this process went awry?   How did this room full of people who went to school to work with kids with special needs turn into a play on words or a dance to not make too many promises they can't keep or physically procure?  Why do we spend weeks writing a plan that no one could realistically fulfill or masked goals in order to not promise too much while fulfilling legal obligations?  They are so careful to chose their words as to not be responsible for fulfilling any of them.  I have to be savvy for phrases such as "will improve" because that is a masked way of saying "you can't measure this success or failure... so we can do this."  I get caught up in the process and end up trying to not get lost in writing "good goals" rather than making them understand our family goals.  I don't want to spend the next seven to nine years learning to tie her shoes when we could just buy her velcro.  We want her to live in our world.

They parade around terms like adaptive PE and community enrichment which may fool some, but I know it really means walking around the gymnasium and taking field trips to McDonalds and the bowling alley.  I don't mind those things and Abby may even enjoy them, but don't try to pass them off as lofty educational objectives.  They were trying to be impressive with teaching Abby to cook and all I can think of is, can you teach her to stop throwing knives or touching items on a hot stove?  SHE'S TWO YEARS OLD!  AM I THE ONLY ONE WHO GETS THAT?

They will spend at least half an hour going over her deficits to wear us down before they lay out a plan.  I sit in my chair quickly scribbling all the progress she has made in the past three years because although it won't make the test, it's very measurable to us.  I need to remember our big picture and the angry uncontrollable child turned "sweetie giggle pants" that her sisters actually want to interact with that she is today.  Her back up onto a lap to read a book or a soft tap rather than the fistful of my hair.  I remember that I can lose her at church and someone will step in and occupy her with a hug or a high five rather than startling me back to reality with a loud scream as she draws blood from a toddler.  She is living in our world!  She came to Easter dinner at a friend's house with us and lasted all afternoon!  She stayed home all day during a break and played with her toys or read books- all day!  I hear her giggle daily rather than "remember the time when Abby laughed"...  She is a success.  We see fewer doctors to maintain her health.  Sure, we add a new one from time to time, but there are less this year than last.

How can we do this better?  I sit in silence.  Trying desperately to look more pleasant than I feel even though I've been cursed with an overly expressive face.  I remember these people may show up at my church & I don't want them to fall off their chair at seeing me present.  We exchange glances hoping it's almost over so we can get away for another year.

I send a paned expression of sympathy to Abby's para as each person seems to pack up their plan and pile it on her.  I pray she remembers that we don't expect her to carry out all these plans, nor do we think they're feasible.  We live with Abby and spend days with her.  We know unrealistic expectations when we see them, but lack the strength to try and change it sometimes. Some of these people don't even know Abby as they've never spent more than minutes in the same room as her. 

Andy squeezes my hand under the table to remind me we're on the same team.  He tires of the formalities and the dance around the topics the other team is hoping we don't bring up but the obvious "elephant in the room," so he blurts in out in the best way possible so we can get down to the real business at hand.  Who will work with Abby in the midst of all the big changes next year?  We want to keep her current para for another year to ease in the transition, but the union trumps the needs of the kid every time... I just don't get it.  Most battles aren't worth fighting, but this one is.  Hoping we won't have to escalate it, but willing to protect our girl if it comes down to it.  

We shelf the actual IEP for next year thankfully or we could've been there for another hour or two. We endorse  their proposed activities because Abby might enjoy them and they will keep her busy.  Who knows?  They may stumble upon something and she'll learn a new routine.  I know that most of them care and mean well, but lack the tools or support to carry much of it out.

I want a simple IEP that moves her forward with developmental goals rather than wordy sentences that say nothing.  I had in my hand a somewhat worthless stack of evaluations that largely wasted the time of those who wrote them.  I hate wasting their time to give me reports on how she compares to her peers.  I want to see her progress measured on herself.  How is she improving rather than how far is she falling behind other twelve year olds?  I know a lot of the answers to my questions are legal requirements, but a bigger bureaucratic response doesn't calm my angst over the ridiculous amount of time and money that goes into a relatively worthless task.  I pitied the folks who were sitting around me trying to validate their requirements and offset our obvious disappointments over the process.  I wonder how often they grow weary with the constant paper pushing waste of time that trumps doing what their passionate about, their jobs... working with kids with special needs?

We close the meeting as usual.  We're amiable.  I seem to think we sort of  have the same goals, but just not the tools or ability to bring it to fruition   We try to trust those who need to champion Abby's cause for us in our stead, but it's hard to put her future in someone else's hands.  So I remember that the Lord made Abby and has a plan for her life.  He will champion her cause and turn it into good regardless of the outcome.  We're Optimistic that things might be different than we feared, but try to temper our expectations as no one knows how any of this will play out.  We genuinely thank those who work with her for their time and skill they bring to her team. I do believe they care and are trying to do what is best, but my frustrations with the absurdity of the process all too often overshadows that reality.  I consider it a victory as I only got to the verge of tears once, and I left there not exploding into a pool in the car.

I'm hopeful.

We live to fight another day and look forward to the possibility of days where this is less of a battle ground and more of a quest or mission strategy session... I do believe it is possible :)

Our victories this year.... drinking out of the fountain herself!

letting her little sister kiss her without grabbing or pulling her hair!

Going into new places all on her own :)  

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