balancing the extraordinary

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{Image is a photo of Becky lying on top of Brooke on our old massage chair. They are both laughing uncontrollably.}

Last night, repeating a well-trodden script, Brooke said, “Your friend, K gets seizures sometimes.”

“Yes, honey,” I said, “she does.”

“Just like mi amiga, L,” she added.

“Yep,” I said, “just like L.”

“Who else gets seizures?” she asked.

“Well,” I began.

“C does!” she said.

“C?” I asked.

“Yeah, C” she said.

I never cease to be amazed by this kid’s memory. C is a friend of mine’s daughter. Brooke met her twice and hasn’t seen her in probably eight years. But yeah, she has epilepsy too.

“And just … like … ME!” she added gleefully.

“Yes, baby,” I said. “Just like you.”

While epilepsy ain’t a club of which anyone would want to be a part (and Brooke is NOT a fan of seizures), the fact that it IS a club makes it, in Brooke’s mind, okay. Knowing that she isn’t the only one, that someone else out there shares her experience, means everything to her. And so, she constantly makes a rundown of everyone she knows — or knows of — with whom she has this commonality. It’s reassuring. She finds it comforting, and, ultimately, empowering to know that she isn’t alone.

I was talking to a mom recently who raised a question about her autistic son’s friendships. Ever since a recent move to a specialized school, she said, his friends are mostly kids with similar disabilities. He’s happier than she’s ever seen him, she said. His language has exploded. His joy, she said, is back. But what about balance? she asked. What about making sure that he has enough ‘typical’ friends?

I get it. I get why she’s asking. I get it because I lived it. Because some ten years ago I sat across from a specialist at Brooke’s preschool and believed that what she was saying had to be true.

“So, now that we have some strategies in place for facilitating play for Brooke at home,” I’d said, “we’d really like to try to come up with some play dates for her.”

“That’s a great idea,” she answered brightly.

“So we were hoping to get your feedback on who might be a good fit for her. We were thinking about starting with Lizzie. They seem to have so much fun together.”

“Oh,” she said. Her face fell. Bubbly and smiling turned to quiet and concerned. After an awkward pause, he haltingly continued, obviously measuring her words.

“It’s just that well .. they aren’t exactly .. um .. I’m not sure how to say this. They’re not really such good influences on one another.”

She said ‘influences’ as one would say cancer. But ya know, contagious.

I pictured Brooke and Lizzie, doing what they did every time they saw each other.

They had this silly script they’d fallen into. We called it doing the ‘Doh Kas.’ They would jump up and down and say “Doh Ka!” together again and again. It had meaning to no one but them. It was their thing. Two little girls who thrived on knowing what to expect had come to know exactly what to expect from one another. It just wasn’t what’s expected by the rest of the world. So it wasn’t okay. They were encouraging each other to ‘act autistic.’

“Oh,” I said, deflated. “I guess that makes sense.”

We were all so focused on giving Brooke the tools to interact ‘typically’ that I accepted the logic.

For a while.

It was a year or two later that we sat in Brooke’s neuropsych’s office lamenting her increasing isolation.

“I just ..,” I began haltingly. “God, I just know how desperate she is to connect with people, Dreamy. I see it every day. She tries so damn hard to reach out. I just want her to have a friend. Just one damn friend.”

He handed me the tissues that he always keeps handy for our visits, then looked at Luau and me thoughtfully.

“Have you sought out any other children on the spectrum for her to spend time with?” he asked. “I would imagine that she would find some sense of connection in those relationships.”

His words opened the door.

Eight years later, my daughter has not ‘one friend’ nor even two. She has friends enough to throw small parties and to meet up with at the park. And while she does have an outer circle of very sweet neurotypical school friends, her entire inner circle, all of the people with whom she is truly close – the ones who reciprocate invitations, who seek her out, with whom she spends time outside of school, are either on the spectrum or are similarly different.

They are kids with whom she has commonality, with whom she finds comfort. Kids who expect the unexpected, who innately understand each other’s quirks, who seamlessly respect and prioritize each other’s needs. Kids who see themselves in each other in some way, no matter how different their individual differences may be from one another’s. Yeah, that was a rough sentence, but I mean it exactly as I wrote it. Sorry.

You want to give your autistic kid balance between their relationships with neurotypical and autistic people? Unless you live in a world vastly different than the one I inhabit, it’s probably not going to happen. Why? Because even if ALL of their friends are like them, the scales are still completely lopsided.

In our family of four, Brooke is autistic and the other three of us aren’t. Outside our walls, if the current statistics are to be believed, approximately 1 in every 66 people is autistic. I’m not great at math, but I’m thinking that would imply that when she’s standing in a room full of 132 people, odds are only ONE other person there shares her neurology. (And given how many autistic folks are still segregated in many ways from mainstream society, that person might not even be there.)

Her life is spent dealing with people who not only see and hear and taste and feel and process the world differently from her, but who believe that they are seeing and tasting and feeling and processing the world ‘correctly’ and she’s not. Imagine the relief of being in a place where that’s no longer, at least for the moment, true.

The question that was raised to us, and that we in turn raised to ourselves, was, “Well, if you want her to be able to have ‘normal’ (yeah, that was the word) relationships as she grows up, doesn’t she have to learn how to interact ‘normally’?” The implication being, of course, that to interact ‘normally,’ at least one of the parties involved must be ‘normal.’

For a brief time, I thought that, as hurtful as it may have been, the answer was necessarily yes. I was very, very wrong.

My girl is not anyone else’s version of normal; she is extraordinary. Therefore, she does not have, nor will she ever have, anyone else’s version of ‘normal’ relationships. She has and will always have extraordinary ones.

Childhood – every childhood – is spent learning how to interact with other people. Every relationship we have is a practice run for the next one. We learn how to be a friend, how to share, how to console, how to listen, how to encourage, how to defend, how to draw boundaries, how to support, how to respect, how to deliver apologies and how to accept them, how to gently offer critical suggestions and how to hear them in return. Everyone we meet gives us the opportunity to hone these skills. In total, it’s a scary, messy, hard process. Made infinitely harder when the people involved are likely to ridicule you just for trying.

So why on earth would we discourage our neurodivergent kids from starting that process with the people with whom they are most comfortable, most free, most understood? Why not let them begin to build those skills in a place that feels safe? In a place where their language is accepted, their perspective not ‘wrong,’ a place where being their happy, flappy, spinny, stimmy, challenged, tenacious, beautiful, messy, three-dimensional selves is not just welcomed, but EXPECTED?

Let them build their skill set THERE. Let them learn how to be a friend THERE.

I have had the privilege of being invited into autistic spaces. They have been wondrous, welcoming, inclusive places. They exist for our kids. And more and more of them will exist as our kids grow up and find each other in myriad way as they build on the foundations painstakingly laid by those before them. They will have each other to lean on. They will have their own spaces from which to draw strength and solidarity.

And when they walk out into their every day lives, populated, as they so often are, by people who see the world differently than they do, they can draw comfort — and empowerment — in knowing that they are not alone. That no matter how tough it may be to so often be the only one in the room, there are other people out there who know exactly how that feels.

Balance ain’t gonna happen, friends. But extraordinary – well, that just might.

 

23 thoughts on “balancing the extraordinary

  1. I love this!! We spent many years, almost 17 to be exact, trying to help my guy make “typical” friends because we thought that’s what we were supposed to do. He spent his entire school years isolated and lonely. He had one or two kids he could count on but mostly he was alone, sad and frustrated. Then he went to college. He wanted to stay local, commute and be in his comfort zone. Tempting as that was, we encouraged him to try living in a dorm. We struck a deal, one semester, the school Bridgewater State is 19 minutes away so it’s easy to come home if he needed it. He was beyond anxious about it. Orientation was a challenge…ok, a disaster. But we kept at it. Bridgewater was RLC dorms, Resident Learning Community, where students can live with like minded peers. My guy chose the Math and Science dorm. Brilliant! Hours after dropping him off, he texted to say he and his new friends were in the lounge watching Star Wars and he was sure he was in the right place. He hasn’t been alone or lonely since. Now, in his second year, he has a large group of friends, he’s had his first girlfriend and first breakup, he has never been happier! We have such peace of mind thanks to Bridgewater. Balance. Its what works!

  2. Absolutely, having like friends, any friends who accept and like you is important. My son’s friends all tended to be those who disabled or had social issues in hanging around the population at large. Despite my twinges of misgivings about this., the pleasures it gave made me let it go.

    Now he’s in his 30s on the brink of making a living wage, just possibly able to live independently. Sadly none of his old friends are in that situation. I say sadly because they are not living very well at all, something that Upsets and frightens him as well as me and has broken many of the parents. Where he is woefully deficient is in ability to socialize with people who are out there hiring and have jobs, are where he wants to be. I wish at some point I’d put more effort in this. But I took the very attitude you are to his autism. Which did come with enough truly amazing gifts to make it easy to do. I truly not only presumed competence but believed he and many of those kids were awesome.

    But the last few years have been rough as the rubber hit the road and the reality that the world doesn’t accommodate much , in fact, takes advantage of differences that are open to that. The things we did address seem to have worked, but what we let go is what preventing him from making that next step he so badly wants

  3. I have twins on the Autism Spectrum and it took a very long time to recognize the gift that they’ve been given in one another. The squeaks, the squeals and the giggles are all welcomed by someone who has been there since day 1. I still struggle with helping them make friends because they have one another and a neurotypical big sister so they don’t seek out other kiddos that often but it is my genuine hope that we are able to someday surround them with a supportive community of “our” version of normal😆 Thanks for another amazing post!

  4. “Her life is spent dealing with people who not only see and hear and taste and feel and process the world differently from her, but who believe that they are seeing and tasting and feeling and processing the world ‘correctly’ and she’s not.”
    My parents had me tested for being allergic at sunlight when I was little, I got diagnosed on the ASD when I was 14, and the doctor refused at telling me anything about it. My family didn’t research it at all, and I didn’t have access at a computer to research it. Was 18 before I thought to research anything about it, but I could have at 16. I just doubted the doctor because the doctor refused to tell anything about it to me, and the teacher aides were not helping me well at all, and refused to listen when I said it was making it more difficult. They would send me alone in a room with a clock to do tests, and it irritates me more than a steady amount of less annoying noise around me.
    “They had this silly script they’d fallen into. We called it doing the ‘Doh Kas.’ They would jump up and down and say “Doh Ka!” together again and again. It had meaning to no one but them. It was their thing.”
    I have someone I do similarly with, it’s amazing fun, and you might think it weird, but I would recommend everyone find someone something like this they can do with.

  5. I love this post. I’ve stopped wondering if I or my husband or both are autistic or not. I do know that we are ‘similarly different,’ and, after a lifetime of feeling alone in the world, now we are not. You can sentence your child to a lifetime of loneliness by trying to ‘normalize’ them, or you can make them happy by encouraging them to find someone ‘similarly different.’ Now, we even have children who are also ‘similarly different.’ I would love for my boys to find friends who are like themselves, but childhood Autism is a rat race of unimaginable proportions and we are not there yet.

  6. This is so enlightening! My only problem,and it’s a big one, is how does one go about finding friends that are like minded. My son is 14 years old, and is growing further apart from his only friend since kindergarten. I believe they can remain friends, but are more different than the same. Please can you tell me how to get started and where to go to find kids that he will be better suited with. He is bright, happy, friendly, but had the hardest time opening up to any kids in his H.S. he is in inclusion classes and seems completely alienated from his peers. My husband and I are so depressed and want nothing more than for him to be doing things that all 14 year old boys should be doing! Please help us with this.

    • My suggestion is always, with his permission of course, to start by reaching out to any therapists he might have who are likely to know kids with similar interests / profiles. They can give your contact info to them if they are interested in connecting.

      You can also look into finding or creating small groups / clubs around a particular interest or affinity either through the school or a local organization like a YMCA or similar.

      One word of very gentle caution … there’s really nothing that “all 14 year old boys “should” be doing.” Everyone is different and the things that appeal to most kids might not hold any allure for him. The only “should” is that we should all be able to do what works for us when it comes to socialization :).

      • Yes! I agree! Pardon the way I worded that. I definitely know that’s not what I meant to say, just trying to get my point across fast. Thank you for responding, and I will try those avenues. He isn’t seeing a therapist at this time.We are currently looking into a social group to see if that helps him open up more with his peers. I just meant “should” as in being young, being a kid, any way he wants to be, not being alone so much, that’s all I meant.

      • Totally get it! School counselor or advisor might be able to make suggestions as well. But I definitely find the easiest way to connect is around an interest. Good luck!!

  7. My girl passes for NT but it takes a toll on her. For 5 years during English senior school she has been the only kid in her circle who is AS blessed, but once exams are through she hopes to be reunited with her primary school “Nerd Squad” of chess playing and quirky boys in a school one town over – if she gets the grades to move. I gulped that she would be moving backwards. This post helped and is helping me reframe the experience today, thank you.

  8. Jess, I don’t know how to message this to you privately, but someone recently shar3d this list of resources with me. My son is on the spectrum, but he is also a cancer survivor. Anyway, this resource list has sev3ral mentions of help for autism and epilepsy specifically! I thought you, and probably a lot of the Diary community might find it helpful. You guys are always on my mind – good luck!

    http://www.dontpayfull.com/blog/free-things-and-grants-for-kids-with-special-needs

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