inter-action

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{image is a photo of a teddy bear and Tigger, both in their jammies for the pajama party}

“They’re just standing there,” he said. “I can’t tell if they’re … ya know, interacting or not.”

There was a pause as he carefully gathered his words.

“I just … I didn’t know if I should be, well, doing something.”

I smiled. I promised to check on them. And then I said, “Just remember, what may not look like interaction to us might feel like interaction to them.”

He nodded. He knew. He’s just wasn’t sure. I told him that I’m never sure either, but I’d check. I went downstairs to where Brooke and her friend, Ana were playing.

Brooke had desperately wanted Ana to come for a sleepover, but she wasn’t quite ready yet. As much as she wanted it too, at a solid two years younger than Brooke and also autistic, I couldn’t blame her parents for holding off for a bit. So I had suggested a sleep-under. She would come in her jammies, bring a stuffed animal, and do what kids having sleepovers do. At bedtime, her mom would come to pick her up and bring her home to sleep. Everyone seemed satisfied with the arrangement.

As we were getting ready, I told Brooke that kids often watched movies at sleepovers and suggested that she could choose three (from the four or five total in her repertoire) and then let Ana choose which of them she’d like to watch. She chose three, set them out on the table and I checked to make sure that we were stocked up on popcorn.

Just before Ana was to arrive, Brooke began to dress her teddy bears for bed. “It’s a pajama party!” she said. “Everyone needs to be in their pajamas.”

She looked at my sundress disapprovingly. “Where are your pajamas?” she asked.

I told her I would be happy to get into my jammies too, and did just that while she finished arranging her dolls.

When the doorbell rang, Brooke was still upstairs. When Ana walked in with her mom, Brooke came to the top of the steps and called down to her, “Come up, Ana!” she said, “We need to get the rest of the jammies from the way upstairs.”

Without another word, Ana took off after her.

Nearly half an hour later, I called (now downstairs) to tell the girls that if they wanted to watch a movie, they would probably have to start it sooner than later. Brooke yelled back from the basement playroom. “No thank you,” she said.

I poked my head into the basement to check that they were okay and in agreement on the movie. Ana assured me that she was just fine. I offered them a snack. We did have popcorn, after all. Brooke said, “We don’t like snacks today. Maybe tomorrow.”

I went up to the den, leaving them alone to play.

And then Luau came up.

“They’re just standing there,” he said. “I can’t tell if they’re … ya know, interacting or not.”

There was a pause as he carefully gathered his words.

“I just … I didn’t know if I should be, well, doing something.”

I smiled. I promised to check on them. And then I said, “Just remember, what may not look like interaction to us might feel like interaction to them.”

I went downstairs again. I found them standing next to each other in the middle of the room. They didn’t appear to be doing anything.

“You guys okay?” I asked.

“Yeah,” Brooke said, “We’re playing together.”

“Awesome,” I said, “Are you having fun?”

“We are,” Brooke said as Ana nodded next to her. Brooke turned and began to walk to another part of the room. Ana followed immediately behind. I couldn’t help but smile.

I came back up to tell Luau that I was pretty sure that whatever it was that they were doing made sense to them. That while what I saw didn’t necessarily scream “Fun” to me, what might scream “Fun” to me most likely wouldn’t even be tolerable to them, so I didn’t really have much of a basis to judge their idea of a shared good time.

They were playing. In their way. Together.

There is no gift for which I am more grateful than my daughter having other autistic people in her life. I thank God that we learned to listen not to those who would tell us it was a mistake to encourage her interaction with other autistic kids, but to her, and began to understand just how extraordinary autistic friendship is before it was too late and she had begun to internalize their misguided warnings against it.

For so long, I insisted on jumping in to facilitate any and all social interactions for Brooke, even those with her autistic peers. “They’re just sitting there!” I’d lament. “They’re not playing!” I’d worry. “They hardly even seem to notice each other,” I’d panic.

And then, slowly but surely, a calmer, more intuitive, less fearful voice overtook the panicked, convention driven, narrow-minded one. “Perhaps just sitting together, enjoying nothing more than the quiet peace that comes with the absence of expectations is enough,” it said. “Maybe playing comes in far more shapes and sizes than I, with my limited imagination, might recognize,” it whispered. “And maybe, just maybe,” it said, “their acknowledgement of each other is either purposefully subtle so as to demand no more of a conventional response than each is comfortable offering the other –or — it’s only subtle to me.”

Some time ago, I posted a graphic on Diary’s Facebook page. I’m not sure where it is now, but it essentially said the following:

After all those years of facilitating interactions for Brooke, I’ve begun to wonder if she, in her own way, hasn’t been doing the same for me.

If she isn’t looking at us, me and my neurotypical peers, and thinking, “Man, you guys really look like you need some help connecting. I hear you talking over each other in a jumble of words, of empty expressions of concern and small talk about the weather, but I don’t see you truly stopping to feel each other’s presence.”

I’ve watched her countless times come into the middle of a conversation, create a circle of hands and lead us in Ring around the Rosie or insist that we put our hands in for a team cheer.

And I wonder, who really is in need of help connecting?

The ones doing all the talking?

Or the ones doing the listening?

13 thoughts on “inter-action

  1. “And I wonder, who really is in need of help connecting?

    The ones doing all the talking?

    Or the ones doing the listening?

    Brooke and Ana get it. How precious!

    Love you,
    Mom

  2. I love this! I love how u share your perspective which helps widen our horizons. Each story has a lesson to be learnt from it. Thankyou. ❤

  3. I’m (pretty much, as far as I know) NT, but quite introverted, and very often the way I enjoy the company of my favorite people is by being near them while we each read a book or dink with a computer or work on a craft. Not “y’know, interacting”. But it works for us.

    I love the way you tune in to Brooke’s way of being, as best you can, focusing on making Brooke’s life as herself richer and more comfortable rather than on making it look more like some archetype of normality.

  4. Jess, I have this question. Everywhere I look I am seeing these notices begging for Autism support so that “our kids don’t lose funding” because some government funding is up. They need our advocacy to continue… yada yada yada… My question is does this funding affect kids like my child, Brooke, Connor, etc.? Or is this funding only affecting those who CLAIM to be helping our fabulous kiddos? I desperately want to get behind funding that helps our kids have the support people they need, but am terrified of enabling those who are only a voice to be a voice, not to actually advocate for our Autistic loved ones. If there truly is a need for me to sign my name to keep great people in place, I’ll do it yesterday. I just don’t want to keep harmful people in place. I’m sure there are many of us who look at these banners, emails, and the like and just don’t know what would be best an err on the side of caution.

    • Jenn, I’m not sure what you mean specifically. There are some petitions that are truly vital – like here in Mass when we get emails imploring us to support bills coming to the State House floor like the recent revolutionary Autism Initiative that helps provide access to education and to create a more uniform distrubution of services etc. Some, like the recently renamed federal Autism Cares Act (formerly Combating Autism Act) is still deeply flawed and needs desperately to be reprioritized. I don’t think it’s ever going to be a simple answer. I think that you have to decide what you trust based on the source, and even then, take a look under the hood. if it’s an organization with whom your core values aren’t aligned, then do some more digging. it doesn’t mean that anything from them is an automatic no go — they might be supporting something that would be meaningful to your family, but say, if it’s AS and they’re seeking your support for funding, that funding is far more likely to be for research than services. If it’s a local, grass roots organization in a particular area (say Doug Flutie), the money is far more likely to stay close and be used for services. For years, I believed all of the hype around these programs to “support our kids and families” when they were actually funding sources for research that, while possibly if doubtfully helping her long term, did not a damn thing for my kid in the moment. I’ve learned that i have to read everything and understand what it’s truly about before signing on just because it says that it’s “in the interest of those with autism.” Sorry that’s not more helpful. It’s just not easy.

      • Believe me I understand! I’m in that boat. Mostly everything I have seen, even Autism Initiative, has had AS tied to it. That’s where the waters get muddy and it gets hard to tell who is the beneficiary of the program they want you to back. I’ll continue to keep digging. We can do all the research in the world, but I think unless we are also working on acceptance and presuming competence, none of that research matters. When we talk about research, it feels like others think Autistics are broken, stuck maybe, but not broken. Stuck people need someone to be patient and offer a hand up when it is needed but mostly to know they are accepted and not alone…and this doesn’t just apply to people with Autism, it applies to people stuck in depression, grief, other illnesses, disabilities and unhealthy patterns.

      • not everything that has speaks attached to it is bad. if they give a grant (out of the 4% of their budget that funds grants) to a service provider you love, it doesn’t negate the service they provide, even as it essentially ‘ties’ speaks to that provider. i hate to toss the proverbial baby with the bathwater when they are simply so big that there will undoubtedly be overlap with good programs, bad programs and everything in between. That said, funding a good program that speaks happens to have endorsed as well is very different from funding speaks.

  5. Quentin has a best friend that he has had since 4th grade, Andy. Andy has 3 brothers on the spectrum and 2 sisters with learning disabilities. Parents were killed in a car accident and now kids live with grandma and grandpa. Amazing! Anyway, Q and A have been together for so long, that they sound alike. Same mannerisms, same scripts. It’s funny. You walk down the hall at school and you really aren’t sure who you’re going to run in to 🙂 Can’t wait for Q to go back to school after being away from A for 2 years. I bet they will just go on like no time has gone by. Thanks Jess !

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