It’s just…normal. It’s not an autistic thing, it’s not a neurotypical thing, it’s just a normal human thing.
It’s just…normal. It’s not an autistic thing, it’s not a neurotypical thing, it’s just a normal human thing.
Last spring, my dad and I were talking about all of the lectures that he gives at his store that relate to the populations of ADD/ADHD, Autism, Asperger’s. He casually mentioned to me, “You work with these kids all day every day. I can give all of the information about holistic health for this population, about how to balance neurotransmitters, support digestion, and improve regulation, attention, and behavior – but I can’t speak to the clinical aspect, and you can. It would be pretty cool if you spoke with me one day.”
I agreed, and filed it in the back of my brain. This fall, he told me that he was speaking in December, and it was time for me to co-lecture with him. And what the heck, I agreed.
Last Saturday we gave our lecture. While I wasn’t nervous about the public speaking aspect (isn’t it funny how things manifest – I am so nervous before going to a party with 40 people, but it doesn’t faze me at all to stand up in front of those 40 people and speak), I was worried about wasting people’s time. I’m sure we’ve all been to a conference for professional development where the title looks great, but you end up bored, or leaving and thinking, I didn’t learn anything I didn’t already know.
I think that because I live this stuff day in and day out, and have for so many years, it’s such second nature to me – and I forget that’s not the case for everyone. And – it was hugely successful. Parents of our kids came, grandparents of our kids came, adults who were and are our kids came. Most people nodded along, laughed when I attempted to make a joke (which made me want to high-five myself), and asked questions/shared stories both during the question session and privately after.
The point isn’t self-promotion, by any means – so not the kind of person I am. The point is that I did something that for me felt brave. And ended up feeling empowering. I know my stuff. I’m good at my job, I’m good at my work, I can help people understand. And, I’m still learning. Not only did I come away from the experience feeling confident about what I know, I left with that hungry yearning for more knowledge. I love going to conferences, hearing talks, reading books – I want to know as much as I can, because it makes me better at my work, and I love my work.
It’s a really incredible feeling to love what you do.
-Listening to one of our campers play and sing a song she wrote on her ukelele, about how much she loves camp.
-Watching one of our little 6-year-olds silently cry. And when I said, “I’m feeling really sad about camp ending. Are you?” he heavily sighed, wiped his eye, and said, “Yeah, I am.”
-Watching another one of our little 6-year-olds say goodbye to our therapy dog. He knelt down, and whispered in Cadet’s ear, “Bye, Cadet. It’s my last day of camp.” He then told us, “Cadet is so sad it’s the end of camp. Cadet wishes he could come back every day. Cadet is going to miss camp.”
-A thirteen-year-old camper saying, “I don’t want to go to school. I wish camp could be forever.”
-Four nine- through thirteen-year-olds making a conga line in the water during free swim
-Taking one last picture of our backyard this morning, and one last picture of the lake yesterday afternoon.
-The idea that yet another summer is done, in the blink of an eye
Joey came into camp a few days ago, dressed in his normal shorts and t-shirt. It was “Superhero” day at camp, and many campers and staff were wearing various superhero shirts or capes. Theme days are not Joey’s thing, nor have they ever been. He observed what everyone was wearing, and told me, “I didn’t wear a superhero shirt.” I nodded, and reminded him that was okay.
He looked around, and then came back to me, saying, “People who didn’t wear superhero clothes are stupid.”
“Oh,” I replied. “Are you kind of wishing you had worn a superhero shirt?”
“Yes.” he nodded.
“So, you could say, ‘I’m a little disappointed I didn’t dress up today.'” I offered.
“Yeah,” he replied, and went up to his group leader, saying, “I kinda wish I had dressed up today.”
Two kids in Joey’s group hadn’t arrived yet. Joey asked me where they were and I told him they weren’t there yet.
“They’re sick.” He stated. “They got hit by a car. They’re dead. I hate them anyway.”
“Do you feel nervous because you’re not sure where they are?” I asked.
Later, once they had shown up, he told them, “I didn’t know where you were! Are you sick?”
Two options are present during free time after lunch. Part of the group is playing a soccer game and part is batting a beach ball back and forth. Joey is deciding what to do. He chooses soccer, then beach ball, and finally decides on soccer.
“Besides,” he tells me, “Beach ball is dumb anyway. I hate it. So it’s fine to choose soccer. Because people who play beach ball are dumb losers.”
“You know what? It’s okay to like both, and just pick one. Because another day, you could play beach ball. You can like both things.” I suggested.
“True,” he nodded. He ran over to the group. “I’m going to play soccer today and beach ball another day!”
The thing is, I know Joey really well. I can predict his every move, and I know exactly what he is thinking and when there is a disconnect between his thoughts and the words that come out of his mouth. It’s not always that easy, especially when it’s a new kid that we’re working with.
But the idea remains the same. That words are not always reliable for our kids – special ed kids, kids on the spectrum, kids with ADHD, kids with language disorders. Especially in an emotional moment, not all words are accessible. Have you ever been so mad that you just freeze because you can’t even get any words out of your mouth?
Sometimes when kids say one thing, they’re trying to tell us something else. Sometimes when a kid looks like they’re being rude, disobedient, or defiant, they’re really feeling a myriad of other emotions and don’t have access to those concepts to tell us. And yes – sometimes kids are being those things. But the idea is that we don’t jump to that conclusion right away. We think through the options first. We consider their profile, their neurology, their diagnoses. We wonder if their behavior is telling us something. We wonder if they are using those words as a placeholder to convey something else. We check in with them. We offer them language and see if they take it. More often than not, you’d be surprised – a kid will take the words you give them if they match, and won’t take them if they are an inaccurate portrayal of what they’re feeling.
If I had handled any of those 3 situations by telling Joey, “That is unacceptable behavior, you need a time out, you can’t say things like that,” nothing would have been accomplished. And of course – we still do process and explain. We give him friendly words to say instead of unfriendly/mean ones. We explain, “When you say ‘I hate them anyway’ it makes me think you’re trying to be mean. Are you?” If a mean comment is directed towards a kid, we explain to him why he needs to apologize, and what it might make the other kid think when he says mean words. We process, over and over again, the different ways to express feelings and thoughts, trying to build new neurologic and linguistic connections.
But we don’t punish. Because what’s the point? When the reason for the seemingly hurtful words is actually a lack of ability to express oneself, we need to teach strategies for accessing those words and concepts. And appreciate that they are even attempting to communicate in the first place.
She paces frantically in circles, reminding me of a caged bird. A primal look of fear crosses her red, sweat-streaked face. I’m trapped, I sense her trying to say. Words are not accessible to her right now. I sit in silence. I wait. She shrieks. “I can’t breathe!” She screams, “I’m going to hyperventilate!” My heart breaks. Subliminally, telepathically, I tell her, I get it. I know this panic. I know how terrifying it feels to not be in control of your own body. I know. Please believe me. I know. I’m here. She makes eye contact with me for a millisecond, and I send love from my eyes to hers, just before the meltdown seizes her again, and she throws her water bottle as hard as she can onto the ground, into the dirt. She stomps over, picks up the bottle, and upon seeing how dirty it is, she lets out a scream and bursts into sobbing tears. I stand up, and softly ask, “Want me to wipe it off?” “Yes!” she shrieks. Wordlessly I wipe it on my shirt and hand it to her. A few moments later, she catches my eye again. I’m here, I tell her with all the energy I can muster. I know you’re scared. You’re safe. This will pass. Time passes. The guttural moans quiet. The sobs turn to whimpers. Words emerge, here and there. She hears me again. Her vision clears. She holds my eye gaze for longer and longer. I quietly ask, “Do you want to go get a snack?” She says, “Yes” in a loud voice, but not a yell. We walk. I match her pace. She brings up a preferred conversation topic. We talk. Fifteen minutes later, after she finishes her snack, I feel her gaze on me. I look up. “Thank you,” she says. And what I want to say is, Thank you for trusting me to keep you safe. For being real and letting it out and letting me see your pain. You are 12 years old, but I admire you and your bravery. Thank you for trusting me in your most vulnerable moments. But instead, I look at her, smile, and simply say, “You’re welcome.”
The characters: a thirteen-year-old 7th grader and a ten-year-old 5th grader. Both cognitively impaired, to a degree. One with a syndrome. One with severe ADHD. Both with language disorders.
The setting: free play time, on the rug, with a huge box of Legos.
The two play together so well. They dig through the Lego bin together. They take turns digging, as both of their sets of hands don’t fit at the same time. Did you hear that? They take turns. They realize when they need to wait. Please tell me you get how big that is. Over the weeks they’ve developed favorite Lego pieces, favorite characters. They hand each other the ones they know the other likes. I know. It’s huge. Their favorite thing to do is find all of the characters and set them up. Sometimes making them look funny, with a mis-matched outfit, or two heads stacked on each other. They say to each other, “Hey Arianna, look at this!!!” They share with each other. They want to show each other things. They giggle loudly, together, when something is funny. Occasionally they call me over, wanting to show me something one or the other found or created. But mostly, they play on their own. Together.
Here’s the thing. I know there are people out there, various people of various professions, who would say, very confidently, “None of this is age-appropriate.” Such people would talk about how pretend play should be a thing of the past. They might add that a thirteen-year-old girl should be connecting with other thirteen-year-old girls, and that a ten-year-old boy shouldn’t be her go-to playmate.
But I can say very confidently, that those people would be wrong. There are no “shoulds”.
Yes, pretend play fades out at a certain age in most neurotypical brains. And yes, most individuals with neurotypically-developing brains would connect with peers their own age. And yes, maybe those individuals wouldn’t sit together showing each other Legos, passing characters back-and-forth, and giggling about it.
But. These two kids don’t have neurotypically-developing brains. So why place neurotypical demands on them? And guess what else? While pretend play develops for so many kids in toddlerhood, it didn’t for these kids. So they’re catching up. Their brains are filling in the steps that they missed. These are kids who didn’t know how to connect. Didn’t make those friendships, didn’t have language until they were in elementary school. So, of course they’re still doing pretend play. They never had.
If I learned a new language right now, that I had never learned before, I’d be at the one-word and two-word stage. I’d sound like a toddler, trying to communicate, in telegraphic speech. Sure, maybe I could memorize a few phrases. But that would be about it. You would never say to me, “Jen, you’re 27. You need to be speaking in sentences and conveying your thoughts in a much more eloquent way. You need to connect with other adults your age and talk with them.” It’s no different with my kids. They’re not going to magically skip developmental steps that everyone else goes through. And why would we expect them to?
To the people who expect them to “fit in” and participate in “age-appropriate” conversations and activities – the reason that they don’t is because they can’t. Because they’re not there yet. And maybe they’ll get there and maybe they won’t. But whatever happens – let’s just celebrate where they’re at. The new skills they’re developing and applying – it’s no less significant than a baby learning to point. It’s just happening at a different time.
So. Let them play. Let them script. Let them laugh. Let them be thirteen-years-old and need to learn how to use words and not push. Let them be ten-years-old and learn about compromising. Because, their brains need to. Because, their brains never did. Because, they’re learning. Because, they’re connecting. Far better than forcing them to sit and talk about things that they don’t understand and things that they don’t care about.
And if you worry about them not fitting in? They do fit in. Just maybe not with whom you expected them to. But that’s okay. We all make different friends. We all have different connections. The important thing here is that they do fit in. They have peers. They have playmates. And that’s worth embracing. That’s what matters.
“It’s OPtimism. It means when you are optimistic.” I hear Tyler say.
“No. AUTism is different.” My ears perk up. I tune in.
“Do you have autism?” A third voice. Nick.
“Yep.” says the matter-of-fact OPtimistic (and autistic) kiddo.
I miss a few exchanges while I answer a very important Lego question from another group of kids playing. When I tune back in, Kayla is half-giggling, half-babbling.
“Autism means you’re stupid! You have a dumb brain. You have a cuckoo brain.” I catch her eye and I know, this is not her core. This beautiful, smart, hilarious fourth-grader doesn’t believe this. I know she doesn’t.”
I casually join the trio. “Kayla, what were you talking about? I couldn’t hear you from over by the Legos.”
She shrieks. “Nothing! I wasn’t talking about anything! I’m sorry I’m sorry I’m sorry! Just forget it!”
I try another way. “Oh, okay. I just couldn’t hear everything. Were you talking about autism?”
Another shriek. “Yes but I didn’t mean it! I was just kidding! I’m so sorry! I’m sorry!” Tears roll down her cheek.
Nick watches, fascinated. He is the one who has been asking kids for weeks if they have autism, trying to get a dialogue going. I think that maybe it’s his way of trying to understand himself. Because he is, certainly, autistic. Nick oh-so-helpfully says, “Oh, so you’re autistic and so is Tyler. That’s why you both have meltdowns.”
Kayla is quiet, and she looks at me. Tyler keeps building with his blocks. So, I answer. “Well, autistic kids can have meltdowns. But so can people who aren’t autistic. I’m not autistic and I’ve had meltdowns before.”
Kayla chimes in. “I have meltdowns sometimes! Really big ones where I can’t stop running in circles. It’s like a tantrum kind of.”
I continue. “So autism is not a bad thing at all. It just means that your brain is different. So some things might be easier for you, or harder for you.”
“Right,” says Kayla. “And you might have trouble learning or trouble making friends.”
“You might,” I reply. “But a lot of people have trouble with those things, and they’re not autistic. So if you’re autistic, does it mean you’re stupid?”
“Nope. It doesn’t at all.”
Later, when we’re all finished playing, we go find parents. I check in with Kayla’s mom, tell her about our conversation. She’s worried. “I just don’t know what to do. She’s known about her diagnosis for over a year. And I think that often she feels good about herself, but sometimes at school….she just doesn’t. She knows she’s different, regardless of how high-functioning she is.” We talk a little bit more. Then I turn to Kayla. She’s standing, staring into space, tears rolling down her cheeks.
“Kalya?” I ask softly. In a flash she is on the ground, wedging herself on the floor, with a table and chairs in front of her. She’s sobbing. “I’m sorry I’m sorry I’m sorry! Everyone hates me because of what I said! I’m stupid and dumb!”
“Do you mean when you said kids with autism have cuckoo brains?” She nods.
“Ohhh. Guess what, though. Nobody was mad at you at all. Everyone knew you weren’t being serious. And I know you weren’t being serious. And I know that kids with autism are actually really smart.” she starts to nod, but another wave sets off and she lets out a shriek.
“No! My brain IS stupid! My brain is wrong! I AM dumb! I am so mad at myself for saying that!!!!!!” I kneel down, not too close, and say very softly, “What can I do to help you right now?” She says that she just needs to hide there and cry. Which makes perfect sense to me, truly. So her mom says, “Okay, Kayla. But soon let’s go home. And you will feel better. Right now you are worried about it, but when you feel better you won’t be.”
Her mom and I talk a little while longer, and eventually Kayla pushes the chair and table back and stands up. “Okay,” she says. “I am ready to go. Maybe when we get home I can cry some more in the dark.” She climbs into her mom’s lap and says, “hold me.” They rock and hug. I catch her mom’s eye, and her mom says to me, “Thank you. We’ll be okay. We’ll talk more about it when she’s calm.” Nobody knows their child better than a parent.
As I leave them, her mom is engaging Kayla in one of her favorite movement activities. Kayla is smiling, her body is relaxing, and she is calm.
My heart broke for Kayla, tonight. Because I know what it’s like. To believe something awful about yourself. And to have moments of clarity, but lose those moments when anxiety roars. To cycle back and forth, around and around, unable to let go of a thought. To not be able to trust the truth that you know in your calm moments.
But I think what we have to do is exactly what Kayla did, and does: allow ones we love and trust to help us during our storms. Be real. Let ourselves be vulnerable and cry and shriek if we need to. Know that we can cry in a dark room. Accept help from ones who won’t judge us. And listen to the truths as soon as our brains are quiet enough to believe them again.