the foundation

We met as a team back in February. Brooke, of course, joined us, far more interested in her bagel than in the proceedings, or so it seemed. She did her best to answer the couple of questions we asked –

Whats’ your favorite part of the day?

What is hardest?

What makes it easier?

Neither the questions nor their (still rote) answers are yet the reason she’s really there.

She’s there because it is about her.

Because we’re talking about goals and challenges, deciding what matters and what doesn’t, what helps and what hurts … her.

And she needs to know that she owns that process. Even if she’s not ready to formally lead or even fully participate in the formal procedure of it, it’s hers. It’s always hers.  She needs to see how it works – who’s there, why they’re there (for her), what effect it has on her life.

She may not be able to connect those dots yet, but I have to believe – I DO believe that she will. Sooner than we think, she will.

~

From the time I could walk, my parents used to take me to antique shows with them. When I inevitably found some little trinket (usually a box – Oh, how I loved the little boxes and the infinite possibilities of all they might have once held), my dad would say, “Okay, find out what they’re asking for it.”

“Remember,” my dad would whisper, “whatever you do, don’t let ’em know that you want it. They’ll know they’ve got ya. Always be willing to walk away.”

I’d walk over with what I imagined was a grown-up swagger and turn over the box, pretending I’d know what its markings meant even if I could identify them. I’d mimic my dad’s half-interest and say, “So .. what’re ya asking for this one?”

Inevitably, the shop owners would look at my dad. They’d give him the answer to the question that I’d just asked. He’d shrug, nudge his chin in my direction and say, “I didn’t ask; she did.”

The shopkeeper, incredulous, would size me up, all minute and-a-half of me, then offer up a price. My dad might say, “So? Whadya think?”

I’d mimic what I’d heard him do a thousand times before. “Eh,” I’d say, feigning apathy. “it’s not a bad piece, but that sounds like a lot for it.”

And so it was that before I could tie my shoes, I could tell how hungry the guy was to make a sale.

I may not have had the foggiest idea of what I was actually learning then (I would have said I was learning about little boxes, no doubt), but all these years later, you don’t want to be the guy trying to sell me a car. It’s muscle memory. I half care. I’m always, always willing to walk away.

That’s why Brooke is in the meetings. Eating her bagel, trying to get us all to engage in a favorite script, giggling as she heads out of the room once her tolerance for the process fades.

Because somewhere, in the midst of all of it, a foundation is being formed. A foundation for self-advocacy. Self-advocacy based on a fundamental, unwavering belief in her worth, her dignity, her ability, herself. Self-advocacy based on ownership of the process, undiluted by the level of independence with which she is able (or not) to navigate it.

It took us months of collaboration to turn the first draft into a living, breathing representation of that foundation.

Yesterday morning, as I proofread the 27 page document for the last time before finally signing and turning it in, I lingered on the paragraph that Luau and I had written — the ever-poorly titled“Parent Concerns.”

“Brooke is a funny, generous, bright, resilient young lady,” it began, “who enjoys life, loves interacting with others, and enriches the lives of everyone around her.”

With some specific stuff in the middle, it ended with, “Her parents seek to give her the tools to interact comfortably with her peers and, ultimately, to form and maintain the lasting friendships that mean so much to her. They are focused on doing so in a way that does not compromise her autistic identity. Most importantly, they want Brooke to have the tools she needs to live a life that makes her happy, whatever that might mean to HER.”

Signed, sealed, and delivered.

The foundation.

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{image is a photo of Brooke on the monkey bars at the park.}

6 thoughts on “the foundation

  1. Have you ever thought of writing a book for the newly diagnosed about meandering your way through the IEP jungle? You know, in all your “spare time.” I think it would be immensely helpful. You have an incredible way of making all of us see our own autistic kids in their own sunlight. I have learned so very much from you. Thank you.

    • This is an amazing idea. And you could get Barb Rentenbach to do excerpts and Amy Sequenzia and Emma and Conner and be a platform to meld the world of parenting and listening.

      You are doing so much. How awful for us to throw out the idea that clearly you have no time in the world to do – sorry for that! Ha – but, there is a real idea here.

      A book that parents can go to that says hey if you want to know how to parent your autistic child, here are some amazing autistic voices who can help you understand and have a lot to say. And in the meantime, here is also how we as parents navigated the IEP system for our child who can’t yet speak for herself.

      It would be invaluable and it doesn’t exist.

      Just my two cents 🙂

  2. I thought I had come so far. And now my mind is reeling, as if you’ve turned it upside down and the contents poured out.

    Never occurred to me to have my son be present at the IEP. At home, everywhere else in the world, my son is celebrated and valued and cherished.

    But the IEP has always been a depressing meeting where we sit down and talk about all of the “can’t do’s” in terms of the school setting.

    Maybe I am partly to blame for that tone.

    He knows he as Aspergers. I have not hid it from him. We talk about it openly.

    Why on earth would I not include him in a conversation that’s going to determine what will help him succeed?

    Because of fear. When I read that Brooke was at the IEP I almost gasped in horror, thinking: but then she will hear everyone talking about the things she can’t do!

    But wow this post.

    I thought I had crossed the threshold with the help of Diary and the Autistic community, into realizing that my goal in parenting my child is not about how I can find comfort as a “grieving parent” (ugly words now) – but how I can let my amazing child succeed.

    I pride myself on being the one to spread the message: love your child for who they gloriously are.

    And here I am, hiding him from the IEP
    Because I don’t want to be uncomfortable in front of him when we talk about his difficulties.

    As if by not verbalizing his difficulty in front of him would make it disappear.

    Priding myself on being able to talk openly about Aspergers with this 14 year old boy, but not wanting to let him have a say in what can help him because I don’t want to hurt his feelings – no, probably because I don’t want to hurt my feelings – is absurd.

    I have to really think this through.

    Really laughing at myself now. Hey, If we don’t say in front of him that he can’t pay attention, maybe he won’t realize that he can’t pay attention.

    I’ve always just wanted to celebrate him. But how can he learn to advocate for himself then?

    Ugh. Thanks for the eye opener.

    • My son has a 504 plan in place. They thought I was nuts when I said I wanted him there in fourth grade for part of it. They said “We don’t do that.” I said “We do now. How will he know who to ask when he needs help? He needs the faces. You may think he’s not listening. He hears it all. ” He comes for the last 15 minutes, eats the munchkins I bring, and has his say. We go over what we’ve discussed and ask him if there’s anything missing, anything inaccurate, etc. And lemme tell ya, he’s a smart cookie . He has added his valuable opinion. He’s 11 now. Some time in the future he’s going to have to do this for himself, and I’m determined to help him learn how. I do him no favors by completely shielding him. It’s all developmentally appropriate for HIM and that’s what it’s all about isn’t it? Glad your lightbulb went on, you will help your kid do just fine. ❤️

  3. Goodness, I remember those time as though they were yesterday. Now you’re passing a great foundation onto Brooke.

    Love you,
    Mom

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