Birth of an Ally

Friday was the Disability Day of Mourning to honor and remember disabled people killed by their parents or caregivers. Vigils were held around the country for people to gather for this purpose.

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I had been to last year’s vigil and decided to go again this year, but this year I was going to bring my kids. At first, the idea of taking my kids, at least one of whom is autistic, to an event where people would be talking about parents killing their autistic children seemed wildly inappropriate.

But then I thought about Jack and how he is working to figure himself out and learning about self advocacy and the fact that he is excited to hear about autistic adults, and I decided that it was, in fact, a really good idea to take him.

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I prepared all three of my kids for what would happen at the vigil and what they could expect. I told them what I expected from them in terms of behavior. Then I crossed my fingers, put us on the Metro, and headed downtown.

I had no idea it was going to go down the way it did.

We were late because of my kids’ bus drop-off times, so we got there after the vigil had started. Jack walked up to a friend of mine and said, “I’m autistic,” to which she happily replied, “I am too!” It was pretty cool.

Quinn immediately disregarded my “no whining” rule and five minutes later, he was wearing both his and my coats and I was shivering. Five minutes after that, he was playing on an iPad on a nearby bench.

Jack lasted a few minutes longer. It was a tough situation for him—outside, quiet speakers, lots of stuff going on around—so when he asked if he could play with Quinn, I of course let him.

Sam, however. Sam. Sam listened to every word.

That's him on the left, listening to ASAN president, Ari Ne'eman.

That’s him on the left, listening to ASAN president, Ari Ne’eman.

I should tell you something about Sam. He is a very sensitive kid. He is very concerned with kindness and justice and he gets very emotional about death of any sort.

I watched him as he listened and I saw how serious he was. I could tell that he was really taking it all in. There was a portion of the vigil where we read the names of those who have been murdered by their parents or caregivers. It was extremely powerful and very emotional.

Sam sobbed. He wasn’t the only one.

After it was all done, Sam came in for a hug, tears streaming down his cheeks. I told him it was so sad and it was okay to be sad. I told him that he and his brothers were safe. I told him that this is why I write about autism and why I do things like talk to classrooms about autism, like I did for his class a couple of months ago. I told him that this is why we have to keep talking about this kind of thing—because there are still so many people in this world that don’t value people with disabilities.

Then I repeated to him a quote that has been used in relation to this event.

“Sam,” I said, “there is a quote that goes like this: ‘Mourn for the dead and fight like hell for the living.’ That is what we are doing here.” He totally got it.

Then I hugged him and hugged him and hugged him.

It’s funny, because I brought my kids to this event for Jack. I wanted Jack to see grown-up versions of himself  and to see the power of autistic community. What I never expected, and was thrilled to watch, was Sam’s extremely visceral developing understanding of what it means to be an ally.

Sam has always been a natural ally to his brothers. He is kind and thoughtful and is able to communicate with and work with his brothers in ways that no one else can. I liked seeing that personal sphere of love and support start to grow larger.

Sam before the event.

Sam before the event.

The whole experience was very meaningful to me—and, I would say, to everyone present at the vigil who keeps those murdered children and adults in our hearts as we move forward to try to keep this from happening to others in the future.

As for Jack, I am not sure how much of the event sunk in for him. It’s okay with me if it didn’t. It’s okay if he just saw that he isn’t alone in this world and that there are people leading the way for him, as he learns to do it for himself.

Jack and Ari Ne'eman

Jack and Ari Ne’eman

As always, I am left profoundly grateful for all of my children, even if they do steal my coat, and I stand with those who work so very hard to make sure they are safe in this world.

16 thoughts on “Birth of an Ally

  1. You have a lovely family. I’m sure the event some impact on all three of your children in the long run.

  2. This was incredibly moving. This is what I want for my boys – to be each other’s support and support others too.

  3. This was touching…beautiful, really. I love how deeply Sam connected to the message. I hope for the same for my boys. I see the beginnings of it here.. which gives me hope.

  4. First, your post certainly raised awareness [at least, for me]. I’m terribly sorry to learn that there needs to be such a remembrance, and honestly didn’t know anything [or, knew very very little] about this subject.
    Secondly, without knowing your children: they all seem like great little individuals.
    Finally, maybe Quinn should dress in layers? :) Hoping for an early Spring….

  5. love this, thank you. I often wonder how/if our kids “pick up on” our values, how they grow and make their own decisions about what’s important; but surely Being There, accompanying us in real life is a crucial piece. Good for you for bringing the kiddos!

  6. I’m so glad you were able to go and take the boys. What you shared about Sam moved me to tears. He’s such a good kid, such a good brother. I have no doubt that each of the boys took it all in in their own ways and that it will come bubbling to the surface in questions, comments, actions as time passes. xo

  7. Jack totally got that he was with his people. It warmed my heart to see you all there. Really cool pictures. And I can affirm that she has great sons. This was a good read, thanks so much for writing it

  8. Okay so, I had no idea that something like this occurred often enough that a group had been formed and vigils taken place ..
    Quite honestly, I am stunned. Thank you.

  9. This was an incredible post…I’ve read other accounts of the vigil, all moving, but this was extra special.

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