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.”
“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 …