self-advocacy

When I first started at this (whatever this may be) I noticed that Autistic people who fought for recognition, acceptance, and support for, well, Autistic people were most commonly referred to by others as self-advocates. So I followed suit. It seemed an appropriate designation as they are, I reasoned, advocates for themselves.

Later, as it has so many times throughout the years, my language evolved. A number of Autistic friends told me that they were not comfortable being called self-advocates, but instead identified as Autistic advocates, or, in some cases, as Autistic activists.

The difference, like so many others when we talk about the impact of language, was anything but semantic. A self-advocate is, as the name so clearly implies, someone who advocates only for him/herself. Thanks in large part to the intersectional nature of ANY effective advocacy movement, I have yet to meet a single Autistic advocate / activist who fights only for their own interests. Ever.

Also, every human being on earth is a self- advocate. (Psst, that last sentence is a link. Read it. I’ll wait.)

Some adults may self-advocate by submitting written requests for accommodation or support. Some kids might self-advocate by asking a teacher for help in the classroom. Some folks of any age might self-advocate by pushing the NO icon on their iPad when a parent or therapist or personal care assistant does something that makes them uncomfortable. And some, with no other way to communicate their needs, may have to self-advocate by pushing, shoving, biting or running.

No matter how we do it, every single one of us has the capacity to self-advocate.

That said, I strongly believe that my role as a parent is to create a situation in which Brooke can advocate for herself as effectively as possible. There are many parts to that job, but I think they can be divided into two categories:

Teaching her to advocate for herself as effectively and comfortably as possible

— and —

Teaching those she may encounter how to recognize, respect, and respond to a variety of methods of self-advocacy.

Brooke began coming to her IEP meetings in fourth grade. She stayed for about ten minutes of the first meeting because she simply didn’t have the wherewithal to sit through the whole hour at that point, but those ten minutes mattered.

At first I was concerned about her coming into a room in which a bunch of adults would be discussing her challenges in all their gory detail. What that might do to her ego, I worried. And then I realized that if there were anything being said in those meetings that could be hurtful to her, then we had to change what was being said. Not just because she might be there, but because it was the right thing to do.

Besides, to think that Brooke wasn’t already aware of her differences and their attendant challenges would have been naive at best (and done her an outrageous disservice at worst). She knew what was hard for her. Every kid knows what’s hard for them. So it wasn’t up to us to protect her from the process, it was up to us to make the process work for her – to ensure that her strengths were highlighted and her challenges framed with sensitivity.

It was our responsibility to ensure that this thing that was entirely about her was taking place in an environment that was accessible to her.

That said, she really was not yet in a position (and still isn’t .. YET) to speak to her needs in the classroom in that setting. So we had to be creative.

At the time, I wrote:

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.

For the rest, I turned to Autistic friends and friends with Autistic kids. We brainstormed. And then this happened:

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.

On the day of the meeting, we were ready to go. The next day I wrote:

When it was time, Ms J came to get her. She came bouncing in and took a seat next to mine. The energy in the room changed immediately. And dramatically. She does that – she shifts time and space and somehow rides in on a wave of electric joy. It’s a neat trick, that.

We told her that it was time to play our stories for the group. She pushed play on my phone and sat back in her seat with a grin.

As the recording played, I looked around the room. Every single person at the table was taking notes. Every one. They were writing down what Brooke was saying. The literacy specialist was crying. And it hit me. In that moment, the room was filled with the most important thing I could have asked for – RESPECT.

Brooke has attended every IEP meeting since that first one three years ago. Sometimes she manages to add some thoughts, more often she munches her bagel or muffin and finds ways to make us all giggle. The point for me is not, yet, what she can add to the process, but instead paving the way to her one day owning it.

She is there to see that there is a team of people gathering to support her. She’s there to understand that she is worthy of that support. She is there to begin to see how it all works. She is there to watch how her mom and dad treat people. How we genuinely and sincerely thank them. And praise them. And point out not just what’s going wrong, but what’s going right. And how they treat us – and her – in return.

She’s there to absorb it all, in her own way, as she does whether she ‘appears’ to be doing so or not, because we know better than to think she’s not taking it in – always. She’s there because I pray that throughout her life, especially after Luau and I are gone, there will still be teams of people who gather to support her. And when they do, I want her to be the one to tell them what she needs, and to show them what she can do.

 

18 thoughts on “self-advocacy

  1. Thank you for this very timely post! We are entering IEP season and my husband and I were just talking about having our daughter, who just entered 4th grade, at the meeting. I love your perspective!

  2. Hi Jess,

    I have not commented in a really,really long time. I love how Brooke is able to attend the meeting, even if it isn’t for a long time. My son, who is now 13(!), still refuses to attend his meetings-too much anxiety. I do go over what we are going to discuss and what he thinks he needs to help him out in school. We also work on his “Team” portfolio together and he gives us his approval. We then discuss with him after the meeting what is going to take place and for him to tell us if it’s not working. It takes a lot, b/c sometimes what he thinks may work, actually doesn’t and then things get tweaked. Either way, I think it is so important that they be part of the discussion b/c in the end, the meeting is all about them.

  3. Brilliant. We also did a similar recording for our girl’s latest review of her EHCP (formal paperwork in England) but I think we could try and involve her more. Also the Godspell and fire alarm touched a nerve here – is it a series I can watch on YouTube somehow?! Another fab post, thank you x

  4. I’ve read and heard bits and pieces over the years and all I can say right now is, “WOW”! Great job, Jess. Great job.

    Love you,
    Mom

  5. Hi…long-time reader, first-time commenter. I’m autistic too, and had an IEP. I wish mine had been set up more like Brooke’s. I used to think the only way to learn to self-advocate was by being in a situation where there was no other choice, because you were the ONLY one pushing for your best interests. Reading this makes me think maybe I was wrong.

    I didn’t get my IEP until high school. I begged and pleaded with my parents to be allowed to come to the meetings. They and the school staff all said the same thing, that I would be allowed in for the last ten minutes. So they talked by themselves first for 50 minutes, and by the time I came in, they had decided my symptoms were the problems, while ignoring the reason behind those symptoms. Every time, I got the impression they just wanted me to look at their summary, say, “Okay! Great!” and then they could be done. I didn’t do that, though. I became a self-advocate because in order to get the help I needed, I HAD to turn that whole meeting around in 10 minutes, in a room full of people who did not want to listen because they thought they had had enough of a meeting. I became a self-advocate because I had no other choice if I wasn’t going to get punished every time a coping skill (what they viewed as a “problem”) surfaced.

    I used to think that was the only way. I’m glad to know it isn’t.

    I wish I had been as lucky as Brooke is in this respect.

  6. Dear Jess – I would very much like to connect with you – I am looking to try to figure out how to bridge what I see as a gap in the community of parents of autistic children – we have on one side of the fence parents who, like you, are fierce advocates of autism as a integral part of personality, and on the other side you have parents who, like me, saw their child’s autism develop as the result of (in our case) a virus, and as such have gravitated to the side of the community treating the autism as an injury. I believe we live in an “AND” universe: we can love and empower and accept our children for who they are while treating an injury. I believe that should these two disparate sides of the community manage to find common language – and I believe we can do this – that together we can advocate to as much greater degree than apart – to create a culture that will ensure our children’s safety and functionality (eg, the services they personally need, which will be different for every child) in the world. Please contact me either through facebook, or email or my blog.
    ~Joy
    domsjourneymomsjournal.blogspot.com

    • joy, unfortunately, i just don’t have the capacity for individual conversations. i can barely keep up with monitoring facebook these days.

      in response to your comment, i absolutely agree that we can advocate together, no matter what our individual ideologies may be.

      as for the “and” to which you refer, i have chosen to follow the lead of the myriad autistic adults who have made me understand that to them, there really is no and … for them, acceptance is acceptance, of everything about them (and therefore our kids), including, if not especially, the neurology that so completely impacts every single aspect of their experience of the world.

      that said, there is so much to be done in fighting for the rights of autistic and otherwise disabled people that there’s plenty of work to go around 🙂

    • Hi
      I been going to workshop’s & autism support groups for 9/ half years in five borough’s you must fine what connects for your child and make sure he/ she can benefit from it.

  7. Good job, Brooke!

    My girl had an ankle injury at school last week, at the Minor Injuries Unit for a check up and xrays.

    In Triage my own 14yr old daughter declared….
    Daughter “I’m Autistic and therefore injuries don’t usually hurt but this really hurts”
    Nurse “You are what was that?”
    Daughter “I’m Autistic and my ankle is causing an unexpected level of pain”
    Nurse “Then it is off to xrays for you”

    🙂

    No other group would understand how my heart delighted at this.

  8. Hi. I just want to let you know in the event that you are not aware that there is an article about Noelle in the September issue of Horse Directory! I tried to post it on your FB page but was unable to. I bet Noelle was a lovely person. Love your blog. Thanks for all of the stories you share. Xo

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