the best IEP Team meeting in the history of the world — part one

 

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It all started at the last IEP Team meeting. I’d begun to feel like all of us sitting in a room with an entire team of people talking about how best to help Brooke in school — making assumptions about what she needs, how she feels, what’s helpful and what’s not — was an awful lot like Congress meeting to talk about autism without having invited any autistic people.

Ultimately we changed that, of course, and, Thank God, some fabulous autistic self-advocates testified in front of the committee. But, before that had come to pass, this is what I wrote:

The very people who have the most to contribute to the conversation – and upon whom it will have the most effect – are apparently excluded from it. Again.

And this …

The other day, you asked me what they (self-advocates) want. I don’t know if you caught it – but I was somewhat stymied by the question. And it’s bothered me ever since. I wondered if I couldn’t answer it because perhaps I just didn’t have the handle on this that I thought I did.

But then I had a revelation.

I can’t answer the question because I’m not the one of whom it should be asked. They are.

What they want is representation. What they want is to be included in the decision-making process. What they want is for us to stop asking *each other* what they want.

What they want is to not be the “they” in this conversation but the US.

That’s the answer to your question. 

I believe down to my core in ASAN’s motto, Nothing About Us Without Us. I write about it, I talk about it, I … wasn’t living it. It was time.

Although it sounded good in theory, I wasn’t sure how on God’s green earth we’d put it into practice, but I knew that we had to. That it was time to begin to plant the seeds of self-advocacy — to introduce Brooke to the process, to allow her to begin to participate in what I fervently hope that someday she will lead. There had to be a way.

I brought it up with the Team. There were no objections, but there were questions. Lots of them. How long should she stay? Should she just listen as an introduction to the process or should we help her to participate? What would her participation look like? Should we set up a writing prompt in class? Make it a project? Work on it with her teachers?

The only ones that I could answer definitely were these ..

  • The time period would be short. I wanted the experience to be positive.
  • She would participate. I wanted — we needed — her thoughts. We were just going to figure out how to make that happen.
  • The prep shouldn’t be done in class. I trust the people who work with her, but there’s no possibility of avoiding suggestion when writing about class, in class.

I did what I often do when I’m stumped. I asked the experts. I turned to a group of autism parents and autistic adults and said, “Help.”

They brainstormed ideas with me – helped me remember what was really important – HER thoughts – and suggested all sorts of ways to create a platform for those thoughts. The one that really got me thinking was from a friend who knows how much Brooke likes Pix Writer. “What if you let her use that?” she asked. I let that thought brew for a while. It didn’t turn out to be the answer, but it led me right to it.

On Tuesday night, Brooke and I were cuddled together in her bed. I told her (again) about the meeting. About how we were all on Team Brooke (but no, baby, in answer to your question, we don’t do a team cheer) and how we would meet to talk about how best to make things easier for her at school. About how we were all very excited that she was going to join us to tell us how to do that. And then I asked her if she’d like to go use her favorite typing program to talk about things at school. She had zero interest.

“No,” she said, “we will do the Godspell story.”

There are lots of Godspell stories, but THE Godspell story is the one in which Mary Magdalene is afraid of the fire alarm at school and Jesus, Jeffrey and Matthew make her feel better. We go back and forth telling it to one another — she starts, then hands off to me and we alternate until the end when Mary Magdalene is happy again and the firemen have gone home.

This was it. This was the platform – the tool that I could use. This was her comfort zone – the characters she knows and loves and trusts. They would ask the questions. Yes, this was it.

I told Brooke that I’d be happy to do the Godspell story, but we’d have to do it a little differently. I told her that she was going to be one of the characters in the story.

She balked at first. Changes to the routine aren’t welcome. But I promised her that if we did one the way that Mama was suggesting, we could do it normally afterward. She agreed.

I asked her if it was okay for me to record our voices. “It will be fun,” I said, “We’ll be able to listen to the story again later.” Again, she agreed.

We began the story. Jesus and his friends were at Brooke’s school. Jesus walked up to Brooke and said hello. And he asked her what works for her at school. It sounded like this …

Me: “Jesus came over to Brooke and said, ‘Brooke, can you tell me something that makes you feel good at school?’ and Brooke said …”

Her: “What makes me good at school is Type To Learn.”

Yes!

“Mary Magdalene said, ‘Wow, Type to Learn sounds pretty cool!’ Then their friend Jeffrey came over and he said, ‘Hey what are you guys doing?’ and Jesus said, ‘We’re talking to our friend Brooke about things that make her feel good at school. And Jeffrey said, ‘That sounds great! Hey, Brooke, can you tell ME something that makes you feel good at school?'”

And so on.

In the end, we had the following:

  • Type to Learn, taking breaks, and the Friday Shake are three things that she finds helpful.
  • Hard work, Reading Naturally, and chapter books are three things that she finds challenging.

We were ready.

I asked if she’d like to type the six things that she’d come up with, but she was done. I couldn’t have cared less. We decided together to play the recordings at the meeting. That would be more than enough.

That night, I was thrilled. As hard as the week had been, I was — at least for a little while — on Cloud Nine. There are so many times on this parenting journey of ours that we feel completely inadequate for the task. Well, I do, at least. When I feel like I have no idea what the hell I’m doing. When I am sure that whatever it is that I am doing is not what I should be doing.

And then, there are moments like this. Moments when we find the key to the treasure box. When we know we’ve done something right.

I couldn’t wait for the meeting.

.

To be continued … 

 

 

 

 

16 thoughts on “the best IEP Team meeting in the history of the world — part one

  1. Now, I do feel privileged because I know what happened. The recording was an amazing idea that worked. And no, readers, I do not get advanced copies of Jess’ posts!

    Love you,
    Mom

    • Just fyi, I love your comments almost as much as Jess’s posts – it’s very clear that she is such an awesome mom because you are too 🙂

      • I was just thinking that…what Lara said. How blessed Jess is to have you Mom! You totally get her journey. You are right there with her …every step.

  2. Hey I thought we did away with the ‘To be continued’ posts……ah, that was just in my head. As you say, “Carry on.”

  3. I love that you have a team that welcomed Brooke’s participation and worked with you ahead of time to work it in, even briefly. The resistance I got at my own son’s meeting was crazy, but I pushed because it was the logical next step for self advocacy. It turned out to be positive for both of us, and it made the “team” put a face to the scores and evaluations. That’s important in a big district like ours in a times of cuts and more cuts. It didn’t keep him from being declassified, which is another story, but it made him aware that there are people to turn to for help, and it made them aware that there are beautiful, worthy individuals that have as many assets as they do challenges.

    • Why is that words in our own language, a language with hundreds of thousands of words, never seem adequate enough to express emotions straight out of our hearts? Those deep, primal emotions seem to need physical expression to accompany the words. It isn’t enough to say that I am excited…I am jumping up and down like a kid on Christmas morning…all the unopened possibilities bright and shiny stacked before you and your girl. It isn’t enough to say that I am proud…I am standing proudly in full Mama uniform, saluting you, Jess, for all you have accomplished, not just for YOUR girl, but for all the children and adults whose lives will be better because of you. You remind me of those ships that break through the ice so that the other less-equipped ships can make it safely through to open water, following the path already made. I know it is not a role you asked for or ever expected in your life. Frankly, it must feel like a burden at times. But, Jess, I sense something huge in this story, something that will be more than the sum of its parts. For better or worse, the events one week ago brought autism to the forefront of the world audience. There is this opportunity, bigger than ever before, to educate and advocate, while minds are open and questioning. And you, my friend, are one of our torch bearers. We are following your lead. You aren’t responsible for us, but you inspire us! You show us what is possible when we never give up, when we keep on climbing and fighting and falling and getting up to do it all again, believing that there has got to be a way up. I know there are a lot of words here, but they still are not adequately expressing what is in my heart. I don’t know if you saw the movie Avatar, but, if you did, you will understand this. I SEE you.

  4. From the mouth of babes! That is just awesome – I cant wait to find out the rest. Way to to go in finding a solution…

  5. Pingback: That’s All « Coloring Outside The Lines

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