I attended Jesse’s IEP (“Individualized Education Plan”) meeting yesterday. It was such a great way to start the week. Who doesn’t look forward to an IEP meeting on a Monday morning?
Jesse qualifies for an IEP and special ed intervention because of “emotional and behavioral disturbances,” or EBD. It’s a cruel set of words, a sorry label to bear in order to get necessary support, a vicious artifact of the continuing stigma attaching to mental health issues.
I can’t imagine describing someone with a physical disability these days as having, say, “mobility disturbances.” How about “intellectual disturbances”? “Attentional disturbances”?
But as far as I can tell, it’s the label we have to attach to Jesse in order for her to qualify for assistance through the special ed system.
What Jesse does have, before we reach for the EBD label, is some specific — albeit broad — mental health challenges. Generalized anxiety, probably depression, OCD, Tourette’s or tics.
We have to call them mental illnesses, because that’s how the DSM describes them. I would love it if we could label at least the OCD or the Tourette’s a developmental disability. It seems to be a lot easier to get support when you have a “disability” than when you have a “mental illness.” I’ve been whining about this for a while now, and I admit I’m getting tired of myself, but let me get it off my chest again. Jesse’s disorders have a lot in common with autism and ADHD — stuff like disinhibited behavior or impulsivity, social miscuing, getting stuck, obsessive thinking, repetitive behaviors — and it’s not a newsflash that there’s a lot of co-morbidity. But two are called developmental disabilities and two are called mental illnesses. A DD is a better passport to services than a mental illness, so Jesse didn’t hit the right jackpot.
Instead of saying EBD is how Jesse qualifies for support, I would rather say almost anything else. I would rather see a category called “pain in the ass (PITA).” I would rather see a category called “belongs to Crazy Nation (not otherwise specified) (BCN-NOS).” (I would pronounce it “bacon nose.”) I would rather see a category called “drives us crazy (DUC).” I would rather see a category called “jaw-dropping inappropriate behaviors (J-DIBs).” I would rather see a category called “what the hell happened to you?? (WHY).”
Jesse has had anxiety and OCD since she was a wee little thing, but it’s only when she fell off the cliff behaviorally that she qualified for an IEP (or at least, before we thought about getting her one). That’s lame. EBD my ass.
* * * * *
I’ve gone off the rails here. I’m supposed to be talking about Jesse’s IEP meeting. Right. So this year I did something I’ve never done before. I filled out a “positive student profile.”
This whole “positive” thing is not something that comes naturally to me, and I’ve always found it strange to plan on going into an IEP meeting with the mindset of talking about how awesome the child is. The only reason we’re there is because the child is not so awesome, right? Because there’s something not going right, something that’s messed up, some failure or flaw that’s making the child so unsuccessful at school that she needs intervention. In that context, what’s the point of talking about all the good things that don’t require intervention? It feels like hot air.
In other words, I’ve been an incredible stinker in IEP meetings.
But I finally gave in and wrote a positive profile. It was so hard. The questions on the form I decided to use were so broad and banal. Who is Jesse? What are her strengths? What are her greatest challenges? What are our hopes and dreams for her?
It was like walking into a bad interview.
But I gritted my teeth and got to writing. As I wrote, I noticed that these human questions — so different from medical inquiries — were driving my language in a different direction. It wasn’t just semantics. I found myself thinking about Jesse not as a diseased child, laboring under the behavioral challenges of mental illness, but as any other little person trying to make her way through life. I found myself spending very few words on the disorders giving rise to her IEP needs.
With Jesse’s input and guidance, I wrote this in response to the question, “Who is Jesse?”
Jesse is a typical kid who wants friendships and connection. She wants to be part of the community and experiences her classmates share. At the same time, Jesse is profoundly independent. She is exactly who she is, and she isn’t inclined to change her interests, her looks, or her behaviors just to please others and fit in. We love that independent spirit.
Jesse has always been full of curiosity and a deep sense of wonder about the world. She loves to be outdoors — to feel mud between her toes, dirt under her fingernails, sea salt in her hair, and snow drops on her nose. She has always loved the wind. Even as a newborn, she would lift her face to a gale wind and close her eyes in pure delight. This simple delight in natural experiences has never changed; Jesse learns through real sensory experiences. She learns best through application — not just by rote or in a book, but experientially through observation and contact.
Jesse sees herself as an explorer, an artist, a writer, and an earth scientist. She likes to be silly and to make other children laugh. She is a thoughtful and kind big sister, who has always shared her life, her time, and all her stuff with her little brother, with an open heart and few regrets.
I set it aside and came back to it later in the day. It felt like a goofy puff piece, a sophomoric and one-dimensional description of my complex child. But I realized too that I was setting the stage for a conversation with Jesse’s team at school — a conversation that should start with who she is and what she needs to inspire her, not a conversation about the educational establishment’s needs. And frankly, I kind of liked this vision of Jesse. She’s a pretty cool kid.
Maybe the positive student profile wasn’t such a stupid exercise after all.
When I got to the question about Jesse’s greatest challenges, I gave her carte blanche to identify them for herself. She didn’t hesitate, so it was pretty clear to me that she’s been thinking about this a lot. One, she wants to be able to eat lunch in the cafeteria with the other kids. Two, she doesn’t want to need help anymore; instead she wants to be the helper.
It occurred to me that this was a sea change in our conversation. For more than a year, our big-ticket goals have been almost exclusively about symptoms of her mental illness — reducing tics and submission to obsessive thinking, controlling her body and mouth, feeling and expressing less anxiety. These changes in behavior certainly matter, but they had swallowed us alive and become an end in themselves, without reference to the general quality of Jesse’s life.
But Jesse’s articulation of her challenges reflected her basic human needs for inclusion and community. She nailed it. Eating lunch in the cafeteria is something Jesse has never done. The clamor, the social complexities, the yelling cafeteria monitors, Jesse’s fear that she’ll screw up behaviorally, and her terrible phobia about having contact with eggs and dying (real and severe allergy, but exaggerated fear) — it’s a lot for her to deal with. But she’s missing out on one of the only communal moments in a school day, which is not a small thing, and it would do her much good to be able to join her peers for a meal every day. And replacing her own neediness with someone else’s was an extraordinary proposition, one that left me with tingles. My child is telling me she’s ready to be the boss of herself, and built into her idea is the profound insight that she can do that best by supporting others.
I told my brother Mark about Jesse’s wishes. His reaction was harsh. “She doesn’t eat lunch with her classmates??” I felt defensive and I explained that it’s been her choice all along. Sort of. Anyway, after I stopped sputtering about it, Mark pointed out the basic truth of Jesse’s goals. “Jesse wants to make friends,” he remarked. “That’s great!”
The last question on the positive student profile asked about “our dreams” for Jesse in the short and long terms. Uuuugh, such a horrifying question. But I went at it anyway. I felt like a sledge hammer:
In the short term, we would simply like Jesse to be able to attend school full time without being overwhelmed by anxiety and tics and self-loathing. We believe that when this happens, she will blossom into academic achievement and social success.
In the long term, we envision Jesse pursuing an independent, brave life. She values her ability to stand up for herself and others, and she dreams of eventually finding a job where she can help people and animals. While these are the simpler dreams of a child, we hear her saying in a broader sense that she dreams of being a champion and advocate for those who cannot speak for themselves. We believe her own experiences in facing the challenges created by her invisible disabilities will empower her in this journey, if we let them.
So dopey. Sooo not cynical. Sooooo optimistic.
Sooooooooo not me.
Except it kind of is, I guess. I do believe every word of that. I’m just not used to saying it out loud.
* * * * *
Being a very pulled together parent, I finished writing this positive student profile thing the night before the IEP meeting and emailed it out to Jesse’s team at school. A little late. I brought a copy to the meeting the next day with a photo of Jesse attached, just like the form told me to do. (See? I can be compliant sometimes.) I picked this photo, because Jesse is outdoors and happy and sassy:
Jesse liked the pic, but she was startled as she looked at this sun-kissed face. “Where have all my freckles gone??”
You live in Wisconsin, my friend. There are few freckles to be had in winter, and even less vitamin D.
Writing the profile flipped everything in my mind as I went into the IEP meeting. I didn’t walk in with the question, “How do we fix things?” Instead, I found myself thinking a whole different set of questions, in which Jesse was the client, not the victim nor yet the criminal. How do we serve Jesse’s interests? How do we maximize her experience? How do we accommodate her needs?
I had planned for some debate and possible conflict. Is what you’re proposing meant to serve Jesse’s needs or institutional needs? Can we stop calling Jesse non-compliant and defiant? Because those are kind of dirty words in the disability community. Is what you’re proposing respecting Jesse’s dignity and humanity?
I was prepared to advocate loudly for Jesse on these issues, but I didn’t need to go there. It turned out, Jesse’s team was already there with me. It turns out that, as soon as I started whining about the over-therapying of her world last month, everyone made the U-turn with us. I got the feeling they were as relieved as me to stop using the stinking timer, stop demanding regimented responses, and start letting Jesse move about the world by herself, without an aide sticking to her six.
At our last team meeting, there had been much discussion of Jesse’s non-compliance and defiance. This was the same time when she was bottoming out at the tic clinic, and I had mentioned then to everyone that we might be taking her to a new therapist to explore the oppositional issues. In yesterday’s meeting, I admitted we hadn’t followed expert advice after all; in fact, we had backed off therapy completely. I said, somewhat pointedly, that we had decided to be non-compliant.
Jesse’s teacher smiled, winked at me, and gave me a thumbs up.
And it was all easy street from there. I learned that Jesse’s behavior is improving steadily, along with her mood. Our discussion revolved around the successful venture of giving Jesse back her dignity and her power to choose. Yes, we talked tangentially about her tics and emotions, and how best to manage them, but it wasn’t a bitter pill. It was just one part of her story.
Everyone is excited for Jesse. She is demonstrating real behavioral change. Maybe things won’t suck so bad for her in the months ahead.
The teachers on Jesse’s team — every one of them a warm, rich-hearted woman — looked optimistic and energized. They seemed well-pleased that they had been able to get rid of the weird interventions proposed by Rogers hospital; or perhaps more accurately, they were well-pleased that I had stopped insisting they use those interventions. Eek. They were back in command, doing what they already know how to do, which is to offer children in their care kindness and dignity.
I realized, as I looked around the room at that happy team, that it hasn’t just been Jesse regaining some of her dignity during the past month.