the best IEP team meeting in the history of the world — part two (sowing the seeds of self-advocacy)

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brooke

a completely gratuitous shot of my girl dressed for silly day last week.

just felt right to include it, cause, ya know, it’s kinda awesome

*

The back story.

Okay, where were we?

It was two nights before the IEP Team meeting and we were armed and ready to go. When the day finally arrived, it was all I could do not to squeal on the way to school. Brooke, on the other hand, was a little less enthusiastic. After all, Mama being there in the morning is different. Different is challenging. Challenging is hunkering down and refusing to go anywhere.

But with some patience and gentle reassurance, we got through the initial resistance and I ultimately sent her off down the school hallway, carrying a backpack three times the size of her body, and on her merry way to class. I then went back to the car to kill the half hour before the meeting by wrapping scratch tickets in their #26Acts notes so that I’d be ready to hand them out at will once we went into the school.

Luau and I arrived in the meeting room a little early. He arranged the Dunkin Donuts we’d brought and spread the Boxes of Joe around the tables. And then we waited.

When the staff came in, the Inclusion Specialist who acts as our Team Coordinator asked if I would be willing to preview for the rest of the team what we planned to do when Brooke came in at the end of the meeting. I was happy to oblige, but I needed to say something else first.

I trembled as I tried to find the words. My voice shook from the get go, and I told them that as hard as I would try, the likelihood of avoiding tears wasn’t good. The Inclusion Specialist grabbed a box of tissues and stuck them in the middle of the table. After years of meetings together, she knows.

Since I was a little rattled, I can’t promise that this is exactly HOW I said it, but this is WHAT I said …

Before we begin, I need to say something on behalf of both me and Luau. We have always been so grateful for all that you do to support our girl. But this week, that gratitude has taken on an entirely new dimension. After the horrific events in CT, we, like all of you, were rattled to our core. But so too, we were reminded that what you all do every day is so very much more than a job. You take care of our babies.

When we read the heart wrenching story about the little boy who died in the arms of his aide, Luau and I, separately approached Ms J and said the same thing: ‘I know that you would have done that for our girl.’

The bottom line is that we know what ALL of you would have done for her – what you would *do* for her. And there are no words sufficient to convey what that means to us.

By the time I finished, most of the room was in tears, me included. I knew it was heavy, but it had to be said. Once it was out there, it was time to move on to the business at hand.

I explained that Brooke and I had made a recording. I told them that they were about to hear the worst Mae West cum Mary Magdalene impression on the planet, but that, well, it satisfied my kid, so there it was. I told them that I was nearly giddy with anticipation for them to hear the story. That I was thrilled above all that we’d managed to TRULY find a way for Brooke to express herself completely genuinely – with no prompting, no suggestion, no ideas but her own.

And then I asked that they take note of a couple of things while listening to the recording. Firstly, I wanted them to really, truly hear and understand the power of using something that Brooke loves – her ‘autistic special interest’ if you need a name for it – to create a platform for her to share her thoughts with us.

“I know that many people preach the urgent need to pull our kids out of their narrow range of interest,” I said. “But to me, this is proof of the folly of those efforts. Instead, I want us all to search for ways to leverage the things she’s interested in – to use them as a tool for learning. Just as easily as these characters can play roles in a play about school, they can do math, teach reading, illustrate social pragmatics in their interactions with each other. I implore you never to dismiss or discourage her interests but instead to use them as tools for learning.”

There were nods around the table.

“Secondly,” I said, “I want to ask you to take note of the pauses in the tape. You’ll see that there’s a fair amount of silence in the recordings. The waiting periods between the time that I ask Brooke a question or prompt her to take her turn in the story are, well, awkwardly long. But (and here I gave credit to the Social Prags therapist who had pointed this out to all of us last year), it’s vital, if we really want to get inside Brooke’s world, to give her enough time to process what’s being asked, what type of answer is expected, what she’d wants to say in response, and finally, how to access the words she needs to say it. That takes time. More time than we are used to giving to a partner in conversation. And it requires patience. More patience than we usually have. But it matters,” I said. “It matters a lot. Because if we can wait. what we get in response is BROOKE. And I can’t think of anything more worthy of the wait.”

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.

When the videos were finished, everyone thanked Brooke. They all told her that they were so glad that she had shared her thoughts with them. They all looked just as proud as she did.

Since she’d done what she’d come to do, I told her that it was time to get back to class. “No,” she said, “we’ll do more meeting.”

I wasn’t about to say no, and I dare say there wasn’t a soul in the room who would either. Her teacher asked if she’d like to do a celebration before we adjourned. I had no idea what that meant, but Brooke did. She bounced out of her seat, her eyes dancing with joy. “We will do a seal clap!” she yelled. “I will show you how!”

And that is exactly what she did. She crossed her arms across her chest and “clapped” her hands against her arms while doing her best imitation of a seal. And then, as per her request, the entire room followed suit. Yup, a roomful of teachers, therapists, specialists and parents were barking like seals. It was a sight to behold.

She tried to keep going, but once was all we could manage without losing all semblance of dignity, so her teacher suggested that she choose another celebration. “How about Elvis?” she asked. Brooke was all for it. Once again, she demonstrated first and then we all followed along, in unison, saying. “Thank you, thank you very much.” I have to admit that my Elvis sounded eerily similar to my Mae West / Mary Magdalene, but that’s neither here nor there.

Once again, we asked if she was ready to head back to class, but for the love of God, why would anyone want to leave this party? Besides, she had a plan.

Already standing, she bounced over to a nearby shelf and pointed to a box that sat atop it. “I will do a magic trick!” she announced. I will make this box disappear-o!”

And then she launched into Periwinkle’s script from Blue’s Clues:

Everybody say, “Hokus Pocus Brooke-a-cocus!”

Of course we were far too invested to do anything but oblige, so once again, in unison, we responded. “Hokus Pocus Brooke-a-cocus!”

She looked down at the box, which, sadly had failed to magically disappear, and said, “Uh oh, gotta gocus!”

And that was her cue to head back to class.

I snuck in a hug and told her how incredibly proud I was of her. And then she was gone.

I looked around the room. The smiles were too big to contain. But there was still work to do. We began to delve into some of the things that Brooke had said. Type to Learn might be a tool to lean on more often; breaks are important; they may need to look for more ways to help make chapter books more accessible and enjoyable.

Later in the day, I would write to the team.

i don’t know about y’all, but i kinda think that was the best team meeting in the history of the world, or, at the very least, the most unique.

thank you all, so much. the love and RESPECT for our girl in that room was palpable.

have a great day,

jess

The responses said it all.
*
So nice to hear Brooke’s voice!
*
It’s great to be able to listen to what B really thinks about some parts of her day at school. She looked so happy and proud, it made my day. Thank you so much for your beautiful words, my job is really reinforcing and its moments like yesterday that make it all worth it.
*

Are you kidding? Having families like yours who appreciate and support teaching and learning and who respect human differences is appreciated more than you know!!

Thank you for the gift…I haven’t opened it yet, but it was really not necessary. Having your daughter is the best present ever!

*

I loved listening to the “interview” yesterday. Have a wonderful Holiday. It is a joy to work with Brooke. Thank you for your support.

*
Thank YOU for creating an avenue where B could express her feelings about the classroom and how we can help her continue to improve skills which she finds challenges. Your recording was amazing! B’s participation in the meeting was indeed incredible .. I’m glad that we got to end with a “celebration” 🙂
*
Before I wrap this up, I need to tell you something. Come closer, okay? This is important.
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Our relationship with the school hasn’t always been easy. For myriad reasons, I haven’t written about the times that were difficult, but well, there were times that were difficult. Some that were really, really difficult.
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Over the years, there has been frustration. And anger. And tears. There were pleas. There were misleading statements and there were outright lies. There were meetings that got so contentious that their ramifications reverberated far outside of the room. There were threats of legal action.
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There was, in the not so distant past, a complete breakdown of trust.
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But …
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There was also an open invitation to rebuild that trust. Because there was an understanding that somewhere underneath the mandate to cut costs and its attendant administrative intimidation – somewhere beneath the ever-looming threat of retaliation for pushing back and calling out the untruths, there were people in the trenches who really, truly cared about our kid. Who knew what mattered. Who had found themselves between a rock and a hard place, but who desperately wanted to do the right thing by our girl. And we had to believe, as hard as it was at times, that, with our support, they would prevail.
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I say this because I think it matters. Because I don’t want you to read this and dismiss it out of hand because you think that it can’t happen for you, for your kid. I know how blessed we are. I do. I know that being in the town we are in, with the schools that we have, we are starting with a huge advantage. I know that the resources that we have at our disposal – the doctors, the therapists, the behind-the-scenes advocates (and the money to pay them) all matter. I get that. And I know that it can’t be discounted.
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But so too, I just want you to know that it wasn’t always like this. And that if it’s not like this for you right now, there is still hope that it can be. It can be scary. I know. It can feel like there’s no point in trying. But there is.
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Find the people who care. You might have to look beneath their words. But they’re there. There’s at least one on every team, in every meeting who wants to do the right thing. I promise.
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Oh, and not for nothing, but I think the donuts really help.
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22 thoughts on “the best IEP team meeting in the history of the world — part two (sowing the seeds of self-advocacy)

  1. Wow! What an amazing milestone. Hoping to follow in your footsteps as our precious boy starts kindergarten this fall. Thank you for doing what you and sharing your family with us!

  2. Needed to hear this today.

    “Self-Advocacy” is the holy grail, but for one of my children it’s been a mask for withholding accommodations “if he doesn’t advocate for himself.”

    I’ve been starting to think there isn’t a public school teacher out there who doesn’t deep down, think that an IEP isn’t negotiable, that they can render their own assessment, piece by piece, on what they’ll do and what they won’t. That they know better than a group of specialists and surely better than indulgent parents. And that making a kid ask for accommodations, day after day, class after class, and defend his need for them, is about “self-advocacy.” (Seems like bullying to me.)

    But here is something completely different. It’s about self-advocacy as voice. I can hear Brooke’s needs front and center, her voice, her sense of herself. Respect indeed!

    As we head to an IEP in the early new year, I’m going to be thinking of the best IEP meeting ever. (Confession: I might quietly try to hocus some of our team away…)

    Karin

  3. I’m going to print both of the parts of the story and share them with my son’s team. We have a really good team and we’ve all come a long way, but I think you nailed it with a perfect example of what is possible when we USE our children’s interests in every possible way. Kudos.

  4. Wonderful…so proud of Brooke and you for persevering. When I look at the people who have made the differences in Jeff’s life I know we wouldn’t be where we are without them. Along the way we had some real “losers” but the “winners” saw Jeff for who he was and embraced that. It sounds like you are experiencing the same thing.
    Especially at Christmas and in light of recent terrible events, I thank God everyday for the “good guys.”
    Merry Christmas to you and your wonderful family!!

  5. I had a hard time focusing on the story once Dunkin’ Donuts were introduced, but once I got past the concept, I was beaming.
    Imagine. Including the kid! Brilliant!

    And I love that Brooke is respected for her brilliance, humor, and charm. That they SEE her. I think any one of us here has been frustrated by folks rushing our kids, mowing over processing times, or not pausing for the punchline.

    Inspiring and awesome. Just like you. xo

  6. Karin- How old is your boy? In my school teachers are told, rightfully so, that IEPs are LAW. Students don’t have to ASK for what is legally theirs. As we are a high school, our kids are encouraged to use the CMC (content mastery center) for tests or even a quiet place for work or a break. It’s available to all students who truly need it. But…if a student wants to test in the classroom a teacher must abide by the IEP. Not doing so is grounds for disciplinary action and eventual firing if he/she doesn’t comply. My boy has Asperger’s. I’ve had to educate a few teachers and once, an assistant principal. What Jess and Brooke are doing for autism is huge and I am thankful. You can do that for your boy, too.

    • Thanks, Shawn. He’s a freshman in high school, and in a GT/ld program. I’ve spent *years* educating, cajoling, encouraging teachers to understand the IEP process. We have a pretty progressive school system (nb: GT/ld program), and he has a case manager who is smart and experienced. But year after year it’s the same story. I write a letter to each teacher at the start of the year. I check in with them. And by second quarter I am saying “but you haven’t offered x, y, z.” They get defensive and even more resistant. They tell me he’s so smart, surely he doesn’t need these accommodations. They tell *him* he shouldn’t need them. And I have to start climbing the chain of authority. It’s depressing and demoralizing for me– but it’s brutal for my son. Some teachers are better than others, for sure, and we’ve had a few gems. Overall, though, it’s at best a struggle and at worst a constant battle. So great to hear things work better for you all! I’ll hope some of that good karma is with us for our IEP meetings week after next. : )

      Karin

  7. I forgot to breathe while I was reading that. I have included my oldest child in her IEP meetings, but my youngest has just had her formal diagnosis and first autism-related IEP (she has always had an IEP for speech). It was a rather contentious process for us, and an intensely emotional eligibility meeting. I was not particularly impressed with the outcome. I felt it ended with more questions than answers. One skirmish at a time, ya know? But the thought of including her thoughts in the process…why does it always take someone else to point out the obvious? Once again, thank you for sharing. Thank you for letting us inside your experiences. Much like the familiar story format helping Brooke, it helped me, too. It took context. I can know something…know all about it intellectually…but then seeing that same info placed in a real life scenario, it changes everything. Two or three potential outcomes suddenly become twenty or thirty. Context. It is everything.

  8. Jess, this is beautiful and inspiring! I plan to share it with my son’s team. And I especially appreciate your honesty about the past. It isn’t easy to be patient and persistent and, well, threatening with the people who have to look after our children each day. Your experience renews my faith in the system that is tasked with helping our children reach their potential while simultaneously often underestimating our children’s abilities. Our job as parents is to prevent complacency…their “good enough” should not be good enough for our children. We need to push each other to reach higher every day. You and Luau are clearly doing that for Brooke, thanks for giving us a roadmap.

  9. The last part of this entry was as important as the meeting itself. It was a great meeting because of what you and the school have forged in your relationship and their understanding of your little girl and you. Mutual respect is what makes for the best teaching for “our” children..
    Great job as usual Jess.
    Love,
    Dad

  10. I’m here in the lies and distrust part of the school. Thank you for what you have said maybe there is hope for my amazing son thomas ,planning on asking for a meeting after vacation I was ready for battle now maybe I will look harder for that one person to connect with, I will never stop fighting for my son but it would be nice to feel at the school its a nonbattle ground and to trust them again

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  12. My daughter got the official diagnosis yesterday. Aspergers. It’s 3:30am I can’t sleep. I have googled every possible combination having to do with autism. I keep coming back to your blog. There is no other place on the Internet that provides me with the information you do. I find the road ahead overwhelming. I come here and through my fog I see a light of hope. Thank you. Thank you. Thank you.

  13. Love, love, love this!!! How I wish our son could participate in some way in these meetings!! I do have to say, however, that I no longer cry after leaving them!! The team is the reason for that!

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