what i want to tell you


{Image is a photo from the 1926 movie Metropolis, in which a woman is fighting a clock. The clock is winning,}

Oh, guys. I have so much that I want to tell you, but so little time in which to do it. I want so badly to call a truce with Time – to stop feeling like we’re always in a battle. Constantly fighting the clock, as it were, gets old. But, alas, Time marches on and lamenting its relentless forward movement is probably a pretty poor way to spend it.

I want to tell you how grateful I am for all of your thoughtful comments on yesterday’s post. I know that the conversation about autism and empathy feels tired to many of us here, as so many similar ones do as well. But it matters so damned much when the stakes are so unfathomably high.

We could spend our time debating how best to conduct ourselves on April 2nd for World Autism Awareness Day or throughout the month that some call Autism Awareness and some call Autism Acceptance and some call The Month From Which I Want To Hide. We could argue about what to do or not to do, say or not to say, wear or not to wear, light or not light blue. And much of it is worthwhile, don’t get me wrong. But, at the end of the day, this, to me, is what really matters.Deep, meaningful conversation with one another and with the people who are out there every day shaping public perception. Conversations about what we experience, see and feel — across the spectrum and across neurologies. Conversations that break down outdated assumptions and peel back the inherent bias in new ones. Conversations that can, when repeated ad nauseam, change the world for our kids.

I want to tell you what we’re actually doing for April. That I’m thrilled to be speaking at a reception for the Conference of Non Governmental Organizations in Consultative Relationship with the UN (yeah, I know, say it three times fast. Just go with CoNGO). That the topic is “Moving from Autism Awareness to Acceptance.” That the very best part is that I’ll be sharing the allotted time with Ari Ne’eman, President of the Autistic Self Advocacy Network (ASAN), so it’s not going to be yet another case of a non autistic person speaking on behalf of autistic people without, ya know, autistic people, involved. And that there will be time for small group discussion afterward, which is probably far more awesome than twelve minutes at a podium. Oh, and that the invitation said Business Attire or National Costume and well, I thought that was kind of awesome too.

Oh man, I have fifteen minutes left. Better type faster.

I want to tell you that ASAN invited me and the girls to speak at their Boston event – An Autism Acceptance Month Multigenerational Community Gathering. Is that not the best name ever? I want to tell you that Brooke’s answer was a pretty emphatic, “No, thank you,” when I asked if she might like to read a poem that she’d written last year (or read or say or do anything else) in front of the group. I want to tell you that I asked her how she might feel about me reading her poem for her and how she said, “That’s good,” and how it feels like this monumental step in the right direction. How all I’ve ever wanted was to hand over the bully pulpit to her when she’s ready and so reading her words in order to represent her just feels right. I want to tell you that the poem is one of my favorite things in the history of the world and how I just think it’s the perfect thing to read. I want to tell you that it goes like this:

My Head

I love my head.

It have hair on it.

Sometimes I get bumps on it by falling and banging it.

Me head is a circle.

It is soft.

I like hair elastics.

I stand on my head on soft things.

My hair is wavy like beach water.

My head is awesome.

I like it.

See? I mean, does it get better than that?

Damn it, I’m really running out of time now, but I still want to tell you that when I told the young woman who invited us to speak that Brooke preferred not to and said that I’d be happy to come, but felt a little weird doing it without Brooke, her answer had me in tears. I want to tell you that she reminded me that even though Brooke brought me into this community that it’s my community now too. And I want to tell you how profound that felt and how welcoming it was and how grateful I was, yet again, for the community of autistic adults who stand ready for my girl when she’s ready for them, and who, in the meantime, are working their asses off to make the world a better place for her to grow up.

And I want to tell you how Katie’s been floundering a little with the whole April thing. How she’s always gotten really into metaphorically lighting herself up blue to honor her sister and to raise awareness and how she asked me the other night, “Now that we can’t support Autism Speaks anymore, what am I supposed to wear?” I want to tell you how I’ve got an idea brewing, but I’m not going to tell you what it is yet even though I know that’s really annoying.

And even though I have all of three minutes left, I’m still going to tell you that last night, when I told Katie about the ASAN gathering, she said, “Oh my God, that sounds awesome! I totally want to go,” and then said, “It’s kind of like the opposite of Autism Speaks, right?” and how I was like, “Um, what?” and she said, “Well, cause it’s actually autistic people speaking.”

I want to tell you that I didn’t laugh, but I’d be lying.


11 thoughts on “what i want to tell you

  1. This is all phenomenal. This is not one’s average life, Jess! It’s taken on, yet, a whole new dimension. I’m so proud of my girls, you, Katie and Brooke.

    Love you,

  2. It might interest you and Katie to know (perhaps you already know) that some autistic people will be wearing gold, because of the Au chemical symbol hidden in the world Au-tism.

  3. LOL that is so true, Katie. Autism Speaks, from what I can tell for myself, has almost no autistics actually speaking with them. They think they know best, which makes them worse than most. Nothing wrong with lighting it up blue, and dressing in blue – since it’s still raising autism awareness in your own way 🙂

  4. Beautiful poem!! I’m so glad you are going as an ambassador to this community…you will do great and we are so grateful for your voice. My son reminds me so much of your daughter…I’m sure you hear that all the time. As we have watched toy story for the gazillion time…I think of the little quote, “we are eternally grateful” …. and we are….I started on autism acceptance shirts in January…it’s vital…and although I have mixed feelings about our community walk(I’m just not impressed with some of the groups to help children and families, especially on a large scale), but I know we need to educate others…People do not get it, educator’s and doctor’s and those who work and come in contact with our kid’s daily….the people you’d expect to get it…still…don’t …sometimes. I hate that my previous comment wasn’t finished…I’d written this long response and my computer restarted!! UGH!! Anyhow, thanks for your words…every day I read them, I learn, grow, cry, and find inspiration and hope, when some days these emotions seem to be so far out of reach.

  5. So Awesome! And Katie’s response was great LOL!

    Gold is a color I’ve seen with Golden Hat Foundation, but also recently saw a discussion where several autistic people mentioned it because the letters “Au” on the periodic table of elements is Gold. (I had thought the Au after people’s names meant “Australia”… oops!)

  6. I’m lost on the gold and taupe thing too im kinda in katieland where I’m NOT wearing blue and prob pissed off a few saying so…gold and taupe seem to be the same idea but AS is huge….I’d like to all gather behind 1 just so we are a force to be reckoned with kwim? Also on a side note any word when the flashblog will happen? And any help w that bc im new to this….

  7. I would love to know what all of your ideas are for celebrating this year. I am a professional working in the schools, and have always donned my blue, and lit up my house, but now I’m a bit at a loss for the most supportive thing to do. I just want to show autistics and their families that I’m a safe place, a safe person, who tries to get it, but I can’t with good conscience do that by supporting autism speaks anymore after reading this blog daily.

      • As always, I will 🙂 in the meantime I think I’m going to have to start looking for some gold outfits to start conversations with about valuing the opinion of self-advocates! Katie is so funny and right on, ASAN is autistic people speaking, and that’s one of the places I point families now who are looking for information.

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