Dear Teens,
We were at the ball park to watch my son play baseball. Tonight was his first game of the season, and he was the starting pitcher. I'm so proud of him! He works hard, and his hard work pays off. He's a good little player for a 10-year-old! His development has happened so naturally, so uneventfully, and he's able to put his mind to something and work toward it.
I made sure to arrive early tonight so I wouldn't miss a pitch or his first at-bat.
My baseball player's twin sister has autism. She has a hard time at the ball park. She begs to go to the playground. Doesn't matter what fun activities I bring for her to do at the field; she begs loudly to go to the park. And begs. And screeches. We're working on that, but I can't work on it with her at a little boys' ball game with a playscape staring right at us. There's an attention deficit component, where she can't think of anything else. And a self-control component, where she can't stop herself from asking again and again if she can go to the playground. Autism is different, and I've learned over time that we work on development of self-regulation and self-control at home, and we see the fruits of it when we're not at home. She's made a lot of progress. Instead of being like a baby, she's more like a preschooler, now. That's huge. And we're still moving forward. :)
Playgrounds are a magnet for younger children. In some ways, this daughter is like a preschooler. She enjoys the playground and the younger children who also like playgrounds. The playscape is something she can't do at home. We don't have a playscape at home - the sets for big kids start at $3K, and when you're paying for autism therapy out of pocket, (it is not covered by insurance) you can't always budget $3K+ for a playscape for your back yard.
Being with younger children is good experience for her, navigating around one another, watching out for the little kids, negotiating turns on equipment. The playground is directly behind our game field, tonight. I allow her to go with her big sister.
Let me tell you about my baseball player's twin sister. Maybe some background will help with context. You see, she regressed into autism after their first birthday. I watched her stop babbling. I thought she'd gone deaf. She quit responding to her name, quit interacting with me, quit paying attention to me. A year later, she had a diagnosis of autism spectrum disorder.
We didn't know if she would speak. And then she began to speak - expressively. The same words she could say, she could not understand. We knew that because we were using a behavioral program from behavioral psychology to teach her, and that behavioral program charted all of her progress. She could identify words going in one direction (expressive), but not the other (receptive). It was as if she was able to speak (pronounce all the words, having memorized many words and phrases) a foreign language but not understand a word she was saying.
She became a one sided word machine. I longed for interaction, dialogue, conversation. Instead I heard entire stories or cartoons, from beginning to end, which she could recite in perfect prosody, and without missing a syllable. But she couldn't have a conversation. Until then, I had no idea that a child could acquire hundreds of words and not be able to interact in 2-way communication. I didn't understand, then, about levels of joint attention and I didn't understand the importance of non-verbal foundations of communication. I didn't understand the idea of a developmental age.
When she was five, with the help of developmental psychology, and new professionals to guide us, we realized that she was missing basics of interaction. She had no reciprocity, no back-and-forth, no turn-taking at non-verbal levels. I learned that she couldn't have a verbal conversation because she couldn't have a non-verbal conversation. Non-verbal conversations come first in development. We still spend time practicing non-verbal interaction with her.
Fast forward to tonight. I let her go to the playground with her older sister to keep an eye on her at close range. I can read the non-verbal communication on that playscape from my position beside the field, because the playscape is directly behind the field on which my son's team is playing. I can see the playground from my position and can be there quickly if I am needed. I can see from my chair at the ball field that you teenagers are blocking the slide and that my daughter with autism is attempting to use the slide. My older daughter's body language shows me she's uncomfortable with the situation that she's watching from the ground. I leave my son's game (while he is still pitching) to see if I need to help my girl navigate the roadblock you've created with your bodies. When I am close enough to hear her, I notice my younger girl is scripting a lot, reciting the same lines over and over, some from TV shows. She does that when she's anxious. Your teenage presence x3 is the primary source of her anxiety at this moment. Surely you notice this unusual behavior, too. Don't you suspect she might have a disability?
I see the three of you, two teen girls and a boy, clean cut, attractive, pleasant looking kids, on top of a platform that leads to three parts of the playscape, the slide, a swirly ladder, and a fireman pole. You three are taking up most of the platform, and specifically blocking the entrance to the slide. You three are in the way in a high-traffic area atop the playscape. (What in your minds makes you believe this is even polite?)
As the playscape became more crowded with little kids, what kept you from thinking or acting upon the thought, "We should move. We're taking up all the room up here and making it difficult for the little kids who love slides to access it." The fact that you did not get down on your own made me reluctant to ask you to take your important conversation somewhere else. I suspected you would defend your right to be there and the situation would get worse. And I hate confrontations.
I decide to say nothing. My daughter must learn to navigate obstacles like you pose on her own. Will she ask you to move? I don't know. I do know that if I jump in for her every time, she'll never get experience, and she needs experience. And she's capable of managing the nonverbal communication involved in approaching the slide (with intent to slide - I know you teens are able to understand the intent in her actions) and waiting for someone to move out of her way. Except she's not ready, from a developmental standpoint, to be around teens like you, strangers at the park, behaving like alpha dogs establishing territory among a bunch of little kids.
I'm guessing you felt pretty dawggone smug with yourselves. If I said something to you, you'd probably say, "We're not stopping the kids from sliding." No, not with your mouths or spoken language. However, your very presence in that spot at the top of the playscape spoke something else (non-verbally) to the children and to me and my older daughter. Your actions and behaviors are rich in meaning.
We've been to two parks in recent days, where there were no teens. I blogged about our visits here and here. When we're at the park with littles, I see how far she's come. The passive-aggressive situation you gave her tonight is a completely different animal.
I watch my daughter climb the stairs, step onto the platform, and approach the slide. Her non-verbal communication indicates she wants to slide down the slide. Occasionally, the teen blocking the slide will step aside to allow my daughter through, but not often. Your non-verbal communication, rich with meaning and intent, says "no", or you were passive-aggressively thinking, "you'll have to ask me first" in an unspoken game of "Mother May I?" that a child with developmental delays is unable to navigate. Either way, you teens are bullies. Soft bullying is still bullying. And my daughter has not experienced that, yet, and has no idea how to navigate a trio of teenage bullies who are head and shoulders above all the other children on that playground. I watched and studied the situation. Almost every time she tried to enter the slide and encountered you, she retreated and went down another way. I could see her talking as she approached you, and it sounded like scripting to me. (She scripts when she's anxious. The professional term is "delayed echolalia".) Your body language told me you were talking about her, and not being kind.
She was almost always the only child on the playscape who attempted to climb the platform and use the slide. Occasionally one of the little kids there tried to slide, but they mostly stayed away from the platform where the three of you stood together. To little kids, you're big. Intimidating.
Once, I saw a really little girl climb up there, and you were blocking that slide, so she tried to go down the fireman's pole. One of you reacted swiftly, called her by name, ordered her not to go down that way. She tried anyway, and you grabbed her from danger. Ironic that your bully stance created a problem for one of the children you apparently knew.
In your minds, you were innocent - just talking - yet you'd staked out the most popular piece of real estate for little kids at the ballpark - for YOURSELVES to have an hour long conversation. Why were you at the ballpark? Was someone in your family playing ball? You're big enough to self-regulate and watch a game. Why weren't you doing that instead of planting yourselves on the playscape with a "we got here first" attitude?
You were out of place - you had no business being there, unless you were a part of the action, playing with, babysitting, interacting with, chasing little kids, lifting them up to reach the monkey bars. You were doing none of that - you were simply having a stand-up-on-this-platform-and-block-the-way-down-pow-wow in a place built for younger kids to play on. (Seriously, how many times do you see teens playing on a playscape?)
I watched. My older daughter watched. She was upset by your behavior, murmured to me that she didn't understand why you kept taking up all the room and blocking the slide.
I chose to say nothing, until I saw a woman, the mother of one of you, come from a ball field and climb the stairs, heard you tell her that the woman in the sunglasses (me) was staring at you, tell her what my daughter said to you. (Did you call your mother from your cell phone to tattle on my daughter or on me?)
I didn't hear my daughter, but I learned later that the exact line she told one of the girls was, "Your outfit is soooooooooooo last year."
That line is from a TV show (Hannah Montana, if you're wondering). A TV show where the teens who are friends cut one another down and get big laughs. I've told her not to say that line. Yet, I can't stop her from saying it. To my daughter with autism, I think, it is something acceptable that big kids (teens) say to one another. They say it on that TV show, and everyone laughs. She doesn't understand the meaning and context of it outside of a TV show. Maybe she was pretending to BE IN a TV show, and she didn't understand why you didn't laugh like the actress in the show.
So I explained to you three and the mom, she has autism, we didn't know if she would ever talk, she is talking now, and yet, she's still has a lot to learn about social appropriateness. I apologized for her. And by the way, you're too big to be up here, would you please get down, she can't navigate her way through all your body language.
I descended the platform, took my place on the sidelines, to keep an eye on my daughter.
The mom of one of the girls followed me, and told me a thing or two. Her voice was calm, so was mine. This was not a particularly heated exchange, but it was not pleasant.
One thing she told me is the playground belongs to everyone and the teens have a right to be up on that platform. (Come on, I'll ask again, when do you see teens playing on a playscape? Uh, NEVER. It is not a cool place for teens. Socially inappropriate. I wasn't referring to their "rights". I was referring to "appropriateness".)
PS: It's a PLAYscape or PLAYground.
Not a STANDscape or STANDground.
What did I want them to be doing, she asked me, out vandalizing cars?
(Are they vandals, I wondered?)
(I wished I'd asked the mom if the teens ever learned how to *share*. That's one skill kids practice on a playscape.)
She informed me that she has a nephew who is autistic and that he is non-verbal, has never said a word, and that he is 10 years old, and that if MY daughter can TALK, that means SHE CAN COMMUNCIATE, and that she was INSULTING her daughter ON PURPOSE.
And because my daughter can talk, that mom informed me, she should have ASKED them to move each time she wanted to slide. She did ask, with her body language. And the teens' very presence in a place they didn't belong was intimidating to her and their body language said, 'no'. My daughter did not understand the complex unspoken rules your daughter and the other two teens had established there.
Why didn't your daughter ask my child,
"Do you want to slide?"
She told me that I'm not a good parent to allow my child to insult someone's outfit.
You have no idea what kind of parent I am.
She went on and on about how being able to speak equals full and total communication.
You are so wrong.
She accused me of trying to make her teen feel guilty after my child insulted her without apology.
We never got an apology for the behavior of the teens.
Mom of teen girl: I appreciate the "mama-bear" in you. But you're way off base, defending soft bullying. And I understand, you were somewhere watching a game, not watching your teen. Teens don't have to be monitored for safety like my child does. What you didn't see was how long they'd been up there, what they were doing when approached by younger children, you missed the soft bullying there.
Mom of teen girl, YOU HAVE NO CLUE. YOU HAVE NO IDEA what communication is. You're making too many assumptions that are not true. Behavior is communication, and tonight, my daughter's behavior communicated anxiety and not knowing a good way to approach a wall of teens blocking the slide. (Your daughter's behavior expressed soft bullying.) The communication you assume that my daughter has because she can talk assumes a higher level of joint attention than you even begin to understand, lady.
Mom: Words don't always = the 2-way communication that you think it does; echolalia (delayed echolalia in this case) does not = an insult. Having a 10 year old non-verbal nephew with autism does not make you an expert about all things autism. You know nothing about my daughter (that's why I'm trying to explain it to you, yet you seem to be incapable of understanding and perspective taking. Your joint attention needs some practice.) I have a 10 year old verbal daughter with autism who copes by memorizing laugh lines from TV shows - and by knowing that about my daughter, I can't presume to know anything about your nephew.
Mom: let's trade. Your daughter can have the kind of autism that mine does. Mine can be neurotypical. I promise you, my daughter would not be on the playground blocking the equipment meant for younger children.
And teens, your behavior tonight was a form of bullying, judging and picking on someone weaker than you, someone vulnerable. You need to recognize that. Own up to it. Accept responsibility. Apologize. Make a better choice next time.
You feel smug and innocent because you didn't TELL her verbally that she couldn't slide. Yet, you bullied with rich meaning and communication at non-verbal levels.
Hey, I'VE GOT AN IDEA! Let's have a big meeting, invite some friends! There's a doctor's office down the street - let's meet in his patient waiting room. It's small. It won't matter that we're that we're taking up chairs meant for patients, even the wheelchair in the waiting room. It doesn't matter that we're pushing the boundary of appropriate - after all - we have a right to be there! Some of us are the doctor's patients, and all of us could be if we wanted to. The idea that the chairs are for patients with appointments is implied, and we'll ignore that, because we have a right to be here. So, here's the rule: IF A PATIENT ASKS ONE OF US FOR A SEAT, WE WILL GET UP AND GIVE OUR SEAT TO THAT PERSON. But we won't have to unless we're asked with spoken words. We won't talk to anyone outside of our group, won't ask if we can help them, won't offer anyone a seat - we need to have our meeting, after all. We'll ignore all non-verbal communication from patients who throw disgusting looks our way, patients who sigh. We'll ignore people who complain verbally to one another. If we are asked in direct, spoken words to move, we'll do so willingly. IF someone with an injury, both feet in casts, for example, complains that we didn't get out of the wheelchair, we'll tell him, "You have feet, that means don't need a chair because you can stand or walk around!"
The mom did ask the teens to leave the playscape, and for that I am thankful. At some level, the mom understood that the teens did not belong there from a socially appropriate standpoint. The little kids were happy, too - they *swarmed* the slide, their behavior told me they were absolutely thrilled they had access to it (finally). The mood at the playscape was completely different when the teens left the perch.
When I was a teen, if I had been one of the three on that platform, blocking the slide for nearly an hour, my parents would have admonished me for being to big to be on a playscape for little kids; they would have sent me somewhere appropriate. My parents would not have defended me by saying, "she has a right to be there".
Times have changed.
And autism is so misunderstood.
In case you're wondering, my daughter did not script lines from videos or talk about the outfits of any of the little kids at our recent park days. Her anxiety was low, there, with no intimidating kids like you, there.
Did I make my daughter apologize to the teen girl? No. I didn't learn what my daughter said until I had the conversation with the mom and the teens had vacated the playscape (hopefully not to vandalize cars).
And yes, on the way home, I talked to her again about how that line from the TV show is NOT appropriate, that she hurt a girl's feelings, and asked her not to say it again. Will she be able to stop herself from saying it the next time she sees a teen who reminds her of that TV show? I don't know. Only time will tell. We're still working on the perspective taking and self-control pieces.
PS to my READERS: Be sure to keep reading the next few posts as I think through this incident.
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Here is a picture I took of that playscape four games later - no teens up high, blocking the slide!
My daughter and I were exiting a grocery store, and an African American couple were entering. The man was dressed in what, apparently, looked like hip hop attire to my daughter, and suddenly, she faced him in a way that let him know she was addressing him (her non-verbal communication was beautiful, here) jumped into a hip hop position, crossed her arms, flattened out her palms, fingers spread wide, and said, "YO!" rather loudly to this man. I was mortified (and rather frozen at the time). He didn't miss a beat. He jumped into exactly the same position, mirroring hers, and greeted her back with a "YO!" and a huge grin. His generosity put me at ease.
