Dear IEP Team~

If you have never had the privilege/honor/torture of enduring an IEP (that stands for Individualized Education Plan) meeting for your children, then i’m not sure any of the following will make sense to you. Allow me to attempt to capture for you though, what it’s like.

And I say all this, realizing that it looks a little different in every school and with every team and for every family. This is my experience.

You first hear the word “IEP” when your child is receiving in home therapies through the state. Your child is so far behind that when the therapists tell you it’s time to start thinking about your child’s transition to school for IEP services, you laugh out loud. School? She can’t even stand on her own and sleeps for 18-20 hours a day! No way she’ll be ok in school. But off you go to learn what an IEP entails.

What it entails, from now until the day your child graduates high school, if they are blessed enough to live that long, is you sitting on one side of a long wooden conference table in a small room crammed with other file cabinets and random pieces of uncomfortable but economical office furniture. You sit there, on one side by yourself, while the IEP “team” sits on the other. They reassure you that you are all one team and all want the same things for your child, but this is hard to believe when they only want what they can afford and you want things they cannot offer, like a lifetime guarantee of life. Sometimes you are lucky to have a therapist or maybe a trusted nurse come with you, but mostly, it is just you, all alone, facing the firing squad. Steeling yourself against the onslaught of “things your child cannot and likely will not be able to do”.

Other parents go to “parent teacher conferences” where they hear nice things while holding hands together about their child who is a “joy to have in class” and “such a smart and advanced young mind!” “You must be so proud!” “Accelerated classes” and “advanced reader” are words any parents would be beaming to hear! And admittedly – I have been blessed enough to hear those words too….but not in an IEP. IEP’s are heartbreaking and you have to dig really really really deep to walk out of them with any kind of joy. Because really, you just want to mourn for what isn’t there. You just once, one time, want to hear – she’s gonna do great in this world, i just know it. I believe in her. I believe in you too. You’re doing it!

But there are timelines and goal assessments and strategies and outcomes to discuss, and supports to put in place. They try to make them sound nice, but they are just code for “different”, “not good enough”, “difficult”, “costly”. My daughter is not a successful learner right now. She has a lot of odds stacked against her: vision problems, attendance issues (she cannot attend without a nurse and we often just don’t have one available for her due to various reasons), her homebound tutor meant to alleviate the non-nursing days gets sick, she has massive attention deficits, we think now there may be a hearing issue, and on and on and on and on. I don’t know what is going to happen in tomorrow’s IEP meeting. I do not look forward to it. Not one bit. I am sure I am going to hear their false sense of security reassuring me that look!!! She met this goal of being able to read four words in a row without stopping!! (Which IS a fabulous thing by the way!) Look! She attended to a task for 30 seconds without a redirect! (also awesome, and very rare!) But what’s missing is that in third grade, those things have been in place in her peers for about 8 years. She’s different…and she knows it. It breaks my heart to see that look in her eye when she realizes she’s being left out or left behind or just plain can’t keep up….Because she WANTS to so bad. There are so many ways where she doesn’t “get it” always, but there are just as many ways where she does. And those are the hard moments.

So I will remind myself tonight….I don’t need an IEP to tell me how amazing my child is. I’m going to tell THEM how amazing my child is.

 

Dear IEP Team~

I know we usually start these meetings by going over all the things that Kendall cannot do. I know there are so many ways that she is “behind” her peers in educational goals.
My child may not ever be able to read “War and Peace”. She may not even be able to read a real actual chapter book unless it’s on audio book or made into a movie.

She doesn’t even remotely understand what multiplication means and forget having her memorize time tables right now, believe me, I get it. Half the time she can’t even remember that she needs pants and shoes on in order to leave the house so asking her to retain math facts seems more than a little far fetched.

I know all of this, I really do.

But what I want to start today’s meeting off with, is by telling you all the things she CAN do, and HAS done, and will continue to do.

What she CAN do, is have a calm conversation with an anesthesiologist about her preferred method of induction and extubation. She can discuss the fact that she does not like sevoflurane because it makes her feel angry when it turns off so they need to put precedex in her IV please. She CAN operate the scanner that scans her plethora dozens of meds every day into the computer when she’s in the ICU. She can read words like diphenhydramine and onandesatron and vancomycin (and knows that’s one of her allergies). She can catheterize herself, hook up her gastric and jejunal extensions, and turn her own oxygen on when she needs to. Nurses go to school for a long time to learn all that my 9 year old can do.

What you don’t see in her one page medical “addendum” to her IEP, is that she is a two time ARDS survivor, has coded twice, and has been in septic shock from bacteremia and fungemia so many times I don’t even know if i can give you a number. Most recently, less than one month ago, she went rapidly into septic shock, required massive amounts of fluid resuscitation and inotropic pressers to keep from going into catastrophic organ failure, was completely neutropenic and had an extremely nasty urosepsis from pyelonephritis. She spent most of her winter break laying in the ICU, in an extreme amount of pain, missing out on all the fun things most kids get to do during break….yet was up and ready (and EXCITED!!!) to come back to school when it started 10 days after she was rushed by ambulance to Milwaukee. Those words above…they are actual, real, scary things. Things she’s lived through. Things that many people – kids and adults alike – do not. She’s a medical miracle. No doubt about it.

And even though we are having a hard time teaching Kendall how to fit into our world of educational goals and boxes to check – she has no problem teaching people who know about her about the real things that matter in life. She has singlehandedly taught egotistical 3rd year residents how to actually treat a chronically ill child, not just a bunch of symptoms. She has taught attending physicians who have years of experience, that they didn’t learn everything in a textbook and that in fact my child laughs at their “textbooks” on how things “should” look or be in the course of illness. She has taught men who are convinced of the absolute authority of science that sometimes miracles still do happen that not even science can explain. I have watched her reduce those same grown men to tears as she weakly lifts a “thumbs up” to tell them she will be ok when she’s finally turned the corner of some of her scariest illnesses.  I have seen her teach people she’s never even met about the power of prayer, and perseverance and of “keepin on” in spite of insurmountable odds. I have seen her bring families back together, soften the hardened hearts of skeptics, and inspire utter strangers to chase their goals and dreams.
These are the things she has taught me. And not just me. So many people. Her reach goes so far beyond just her classroom, her school, this town.

So we’re worried about what she’s not learning….and to quote one of the best movies of all time…”you go on and stamp your form there, sonny. Because to tell you the truth, I just don’t give a damn.”

My child may not be able to multiply 2 x 3. But she can multiply love. And faith. And joy.

My child may not be able to read a paragraph, but she can read the hearts of people who are hurting. And she can help them.

My child may not be able to focus on well, anything…..but it’s because she’s too busy taking it all in~ LIVING. The only way she knows how – full speed ahead.

 

My child will never be a valedictorian. She will probably only barely pass classes by the skin of her teeth. I will rejoice for every D because it isn’t an F.

No – my baby girl doesn’t fit in all those nice little boxes.

She’s too big for that.

She’s a warrior. And she fights for every hour of every day that she is blessed to be here.

And I?

I’m her mama.

And i’m right behind her, fighting for HER with everything in me.

 

So now that I’ve introduced you to the REAL Kendall,

we can get started with this IEP.