IEPs & One Amazing Girl

Ada date with Mom & Dad

I have many character flaws, and in multiple ways they seem to grow in number and severity as I age.  I’m guessing that somewhere around 40 my “say-it-like-it-is” character flaw just shifted into over-drive, and I know my bluntness is over the top because I’m getting a lot more of the “long-pause wide-eyed, OMG-did-she-just-say-that” looks that people used to give my Grandpa.  Sadly, a small part of me celebrates that – I really don’t mind being a little weird.

Additionally, pile on top of that the whole special needs parent thing – sure it can be rewarding beyond measure, but on a day to day basis it cuts 9/10 of my Minnesota nice time out of any conversation.  Bottom line – I’ve lost touch with too many friends, don’t get to see family as much as I’d like, and am often overwhelmed dealing with one crises or another – usually on very little sleep.  Heck, I’m a regular party!

All this allows for my many flaws to only stand out even more – I speak before I think, I don’t dance around the ugly topics – I just get them out there, I share way too much, don’t care if I’m occasionally inappropriate and I can usually find a way to weave humor into almost any situation because it lightens up the ugly stuff and it’s my coping mechanism.  Let’s just say this adds an interesting dynamic to IEP meetings.

Last week was Ada G’s IEP, and not just any IEP, but a special one including all those fancy assessments they do every 3 years.  Let me own here and now that even the letters IEP make my anxiety rise and cause me to want to yell bad words out loud (butthead is quite popular at our house these days).  Yeah, sure, they are a necessary evil, but it’s not that awesome to get giant reports full of assessments telling you how badly your child sucks at everything as compared to her peers.  No matter how well things may be going (and frankly, things are going pretty well for Ada in the big scheme of things) reading these results is like a giant reminder that she’s never going to be a typical kiddo and that no matter what, autism has a hold on her in ways that will impact her academic performance without special help.  Kind of tears your heart into a million little pieces to think of the thousands of hours of hard work my little girl has put in to come this far, and to still be struggling so mightily in some ways leaves me feeling like we’re failing her.   I hate that.

Some of you Red Couch readers may recall that Ada requested to move from the elementary school her brother Elliott had attended that has an autism program to our neighborhood elementary that Henry attended.  It caused a great deal of angst – not for Ada – but for her crazy pants Mom.  She was as sure as sure could be that the move was the best thing for her, and even as I worried that starting over in a new environment could prove very challenging for her, Tom & I were incredibly proud of her diligence, tenacity and unwavering wish that she should be attending school with other kids from our hood.  I had more than one tearful meeting with the Principal who could not have been more supportive, but who finally told me “Mrs. Kramer, we’d love to have Ada, but you don’t have to make this move if you’re not ready.”  I was grateful for his candor because he put everything in perspective – indeed we did need to make that move because when you have a child with autism who is socially motivated to want to get to know kids from her neighborhood, you don’t deny her because her Mom is not ready.  Instead, Mom upped the Prozac a bit, and Ada started at the neighborhood school in September and has never looked back.  She loves her school, her teacher, and feels strongly connected to her school community.  Win-win.

Then the dreaded IEP notice arrived – the one with the testing results that included words like “severe”, “1%”, (not in a good way 1%) “Does meet criteria for ______”, and other fun things like that.  It’s kind of funky for me because when I first read the report, I thought it sounded like a child with severe impairment – likely needing center based help, as her brother, Elliott does.  It sort of jarred me because in reality, Ada is basically mainstreamed all day, and when she needs extra help, the special education team has been assisting her within the classroom.  Even though I try to prepare myself emotionally for these reports, I must admit that this one caught me off guard.  I really didn’t expect her scores to be so bleak, especially when in so many ways things feel like they’ve gone so well for her this year.  That said, I should know better after all these years that assessments are usually crummier than what you expect, and often quite unexpected (sort of like Henry’s voice these days – could be boy or could be man – it’s always a surprise).

I arrived at the IEP meeting with a peace offering – some type of chocolate is a wise choice with educators in my humble opinion – it doesn’t make up for having to meet with a slightly crazy Mom for an IEP on one of the first warm and sunny days we’ve had since October, but it can’t hurt .  We did introductions, as I had not met all of the special education team members in person, and it helped to have a human connection to the report.  I didn’t say that it was like a giant kick in the gut to read some of the assessment results and numbers, but I felt it.  They probably knew – they have to do this stuff all the time.  I did, however, immediately sense that each person in that room genuinely cared about and wanted to help Ada – and even better, they “get” her, because she’s amazing and fun and sensitive and beautiful and bright and vulnerable and a bit funky all wrapped up into an incredible little girl that has overcome obstacles that at one time felt as tall as the Grand Canyon and that’s so much more important than any crappy assessment could ever capture.  So there.

In the end, I tried to do a lot of listening, learned a lot about what Ada’s current strengths and challenges are, cursed a few times, shared too much and talked about the possibility of needing more Prozac (E’s IEP is in May – best to ramp up the meds now I think).  Heck – I think it’s the first IEP where I didn’t cry.    And in case you were wondering, yes, it is possible to infuse humor even into an IEP – and I consider it a worthwhile challenge.

I walked into that meeting feeling sad and defeated, and I walked out having separated the educators from the awful test scores, and believing that they are going to help Ada navigate her school journey, even when it gets a bit bumpy – ready to fist bump her many accomplishments yet to come.  Sure, I do wish that Ada felt more comfortable unleashing a healthy dose of the “tough broad” persona we see at home when she’s at school (works wonders with the middle school brothers).  But with continued nurturing and encouragement from these educators who truly care about her, I believe her inner “Towanda” will start emerging here and there, and frankly, nothing would please me more.

When I arrived home from the IEP meeting, Ada was in the back yard, playing with a bunch of neighbor kids, laughing and muddy and just being a kid, and it made me smile and cry at the same time because it reminded me how far she’s come.  Was there drama?  Of course.  I believe someone didn’t want to be locked up in jail (aka the playhouse) and they had to work through that before becoming a bunch of interesting African safari animals and later going for a bike ride in the warm sun.

I silently thanked my amazing little girl for reminding me what’s really important.  IEP’s and assessments might be necessary, but bike rides and playing in the yard with friends on an unexpected warm sunny day – that’s something we could only dream about when Ada was diagnosed with autism.  Now, Tom & I get to cheer Ada on as she works towards achieving her own hopes and dreams, and that trumps crummy assessment results any day.  Go Ada G!