Seymour and I are having an interesting week, if you define "interesting" as "so stressful that physical symptoms manifest." It takes a lot for our kids to blow the top off our OMG meter at the moment, but that Mali, she always comes through.
Today, while picking her up from school in my savior Jennyalice's car (as mine died 45 minutes before I needed to pick up five different children from five different locations), the principal came over and put her head in the car window.
I jumped. She smiled, tightly, and said, "You know that disciplinary letter I sent home last week, the one you never got?"
"Yes, but we talked about what happened, correct? Or has there been another incident?"
"Well," said the Directora, "I actually found the form. I guess Mali didn't want you to see it, because she forged your name and turned it back into us."
Mali forged my name. My six-year-old forged my name.
I told the principal we'd talk the next day, and drove away as my dropped jaw was stopping traffic.
"Mali," I said when I could actually talk again, "did you know that it's illegal to sign someone's else's name for them on an official document? It's called forgery. People go to jail if they're convicted of forgery. It's a big deal."
Her eyes became huge. "I didn't know about forgery! I just didn't want you to see that I was in trouble!"
"I know. But this is serious. And we're going to talk about it with Daddy when he gets home."
And we did. And Seymour used the jail metaphor as well, once again proving there's a reason we're together.
Much as we try to be a preemptively positive-behavior-shaping family, this time we're using consequences: No screen time for a week. It's going to suck for everyone. But this kid, she's not going to thrive in a wishy-washy household; she's going to take it over and make us all into her minions. That's not healthy. That way lies clinical narcissism, or at least a tendency to manipulate first and ask questions later.
I'm not happy about any part of this scenario, and while I intellectually get the laugh factor in a six-year-old who is wily enough to -- as far as she knows -- invent forgery, I am not even remotely amused.
Of course I do, I told her, that is a question you never have to ask. But that's different from approving of your actions. I love who you are, I don't like what you did.
She still seemed unsure. I feel very rocked by this incident, by the sneakiness and defiance it represents. Or maybe it's just boundary pushing? I have no idea. Iz and Leo never did anything like this.
She's amazing. She's frightening. And sometimes I worry that, as a parent who may not have the energy level necessary to properly guide a kid of her intensity and latent criminal tendencies, I'm not the best person for the job.
It's been mind-explodingly and productively busy here lately, but I wanted to note two significant Leo stories. They're important. He deserves witnesses.
First, he ended a tickle session with me not with his usual pushing away or even an "all done," but by saying loudly and firmly, "Stop it!" This is clear as hell, and lets our boy stand up for himself in a way that needs no interpretation. Very, very glad.
Second, at school, he got upset about putting the class place mats away after snack. He complained loudly about the place mats all day long, and the class staff couldn't understand why -- until later on they realized that two of the place mats had slipped off the back of the table and fallen on the floor -- where no one except Leo had noticed them. They let him put the place mats back, and his world realigned itself into a place where he could be happy. Glad he got to follow through, finally.
Our boy, he can stand up for himself. It is a relief, and I am proud, and that's about that.
Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. -Winston Churchill
Sara thought for a moment. She saw she had made a mistake.
-Frances Hodgsen Burnett, A Little Princess
You'd think we parents of kids with special needs -- righteous avengers that we are -- would be extra-invested in listening to the self-advocates who share our children's experiences, who in many cases used to be our children. You'd think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I'd written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You'd think that, knowing how many times even well-meaning people have dismissed my son's needs or spoken to him as though he was an obedient puppy, I'd understand how self-advocates might have very little patience for parents who patronize or disregard them.
But, I often don't get it, as I am a neurotypical parent, not a self-advocate. And when I advocate for my ten-year-old son, I sometimes overstep advocacy boundaries, or am not inclusive enough -- talking about "children with autism," for instance, when I really mean "people with autism."
If self-advocates let me know that my efforts are misguided, that is when I have a choice. I can react instantly and defend my intentions -- or I can take a step back, and try to understand why a self-advocate would take offense at something that I worked so hard on, and meant so well by. I can listen to what they are saying, rather than how they are saying it (not always easy). I can try to determine exactly what I have done that is hurtful, and ask how I can avoid doing it again. And I can remind myself that this process, this learning does not equal total and complete agreement (nor should it; if we are truly talking about a meeting of minds).
It's not easy. I am a defensive person, I have a hard time taking criticism. I also loathe conflict and want everyone to get along. Plus, I live on the Internet where instant reactions are not just possible but expected. So, instead of listening and acknowledging, instead of giving myself processing time, instead of asking questions -- I too often react on my terms. According to my expectations of civil disagreement, and my expectations of trying to understand each other's contexts.
Which is ironic, really, when you consider that I am most often engaging with Autistic
self-advocates. Even those not terribly familiar with autism usually know the stereotypes of frankness, and of challenges with understanding perspectives not personally experienced. I should know that demanding diplomacy, and asking to understand each others' contexts is not exactly fair in a neurodiverse environment. As Nomatissima wrote in I’ve Earned My Anger: Policing and Dismissing Autistic Emotions:
The fact that my emotions are deemed “not appropriate” for the situation makes it all the more infuriating. It may not seem like a legitimate response to a neurotypical, but an autistic perspective is going to take certain things a lot more seriously, and will more rapidly notice when something isn’t right in a situation related to disablism. It’s not always going to be pretty, and we’re not always going to be able to sum it up in tidy little speeches. That’s okay. It should just show how committed we are to this, and what it means for us, how profoundly we
care about this topic. It’s not a matter of weakness, lack of manners, or being “emotionally incontinent” (Nice imagery there, eh?)
The autism stereotypes I cited above are not universal among the diverse community of Autistic self-advocates, of course. Some folks with autism are fully committed to civil disagreement. Others have clarified that it is unfair for we who rely on the (problematic) concept of theory of mind -- on being able to anticipate how others might feel and how our actions would affect them -- to expect accommodation from Autistics. As spunkykitty wrote on Rachel Cohen-Rottenberg's Autism and Empathy project:
But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.
I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic -- but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.
If we parents say that we want to have conversations with self-advocates, then we need to do the human thing, and truly listen, try to come into self-advocates' spaces, rather than always expecting them to come into ours. And then try to ask the right questions! As Lynne Soraya wrote about her fourth grade teacher, whose overzealous attempts at forced social inclusion made Lynne miserable, and who wished her teacher would have just asked her why she was rejecting her social overtures, or tried to understand why she was behaving the way she did:
My best teachersdid ask why. Better yet, they often read between the lines and came up with the answers themselves. It's sad for me to see that despite all the education and awareness, so many have not learned to do the same. The unfortunate truth is that sometimes, what masquerades as compassion and empathy is really just judgment, in disguise.
It's hard for me not to get defensive when self-advocates are critical. Because I mean well! But why should self-advocates think I'm any different, if their experience has largely been that
people in my position discount their experience, and if I'm still talking, not listening?
Some of the most difficult exchanges happen when self-advocates criticize parents, and parents respond that self-advocates are not like their kids and cannot speak for them. This make my conflict-averse head spin. Because here's the thing: on the small scale, the personal experiences within the disability community may differ, but on the larger scale, and in terms of advocacy needs, our kids and self-advocates have more in common than not. Making comparisons isn't helpful, not when both experiences are legitimate -- and especially when those comparisons are tangents, irrelevant to the argument that triggered them in the first place.
The recent introduction of a medical code for wandering is a stark example in which both parent and self-advocates concerns are legitimate. Wandering can be a legitimate safety issue. Who wouldn't have wanted a way to prevent eight-year-old Joshua Robb from wandering off into the woods yesterday morning, especially as he remains missing?** But parent and caregiver concerns in no way de-legitimize the concerns of self-advocates, who know -- often from personal experience -- that codifying opportunities to restrict the movements of both children and adults can lead to abuse, due to insufficient understanding of (or attempts to understand) the behavior that led to the wandering in the first place, as Landon Bryce illustrated:
Since the wandering code will go into effect October 1 despite protests from the self-advocacy community, the onus is now on parents and caregivers to understand wandering behavior, and ensure the code is not being used to restrict movement unfairly, abusively, or due to convenience. Parents tell themselves they would never allow this abuse to happen, self-advocates know it too often does.
We parents like to think of ourselves as good people, and hopefully, mostly, we are. But do our actions back up those good intentions? We get filled with righteous indignation while watching movies about objectification by the dominant culture, films like Temple Grandin, Boys Don't Cry, or My Fair Lady. We are outraged by stories of middle school Aspergian torture. We believe, in our souls, that we would never behave so badly toward another human being. We believe that, were we ever in those situations, we would act differently. Right? Let's try to prove it.
I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.
I know I'll fail a lot, probably badly. I know some self-advocates will be really honest with me when I fail. I know some self-advocates don't care what I do, as they're working on strengthening their own community, into which parents and caregivers do not factor.
At the end of the day, we want the same things. At the end of the day, we're hoping for the same better world. It's just that we who actually live this life, we who actually experience these challenges, are in a position to tell the world that there is not just one way to accomplish them.
At the end of my day, I want a world that treats my son with dignity and respect, takes him seriously, and gives him the accommodations he needs -- regardless of whether but especially if he asks for them -- without patronizing or infantilizing him. And if I of all people do not treat my son's possible future selves -- today's self-advocates -- the way I hope he will be treated, they way everyone deserves to be treated, the way no one should ever have to ask to be treated, then how could I ever demand anyone treat my son better?
It's not easy to get Mali to demo thoroughly engrossing apps like Nosy Crow's just-released Cinderella story book ($5.99), as she becomes so enthralled she forgets to respond to her mother, or the camera. See for yourself:
Like the same studio's previous app, The Three Little Pigs (reviewed here), Cinderella is a top-notch production, with intricate but easy-to-interact-with animation, and funky, fun design. It also has a bonus for iPad 2 users -- you can use the front-facing camera to appear in the Ugly Stepsisters' mirrors!
In the week we've been trying out this app, it has consistently been Mali's go-to play choice, so I do believe that is a recommendation. I'd be interested to hear what other little quirky fairy tale lovers think, too.
---- Mali was given a copy of Cinderella by Nosy Crow, but this review is her and my honest opinion. We were not otherwise compensated in and way.
If you can't make it to my PHP.com iPad workshop on 9/14, here's what I'm going to talk about. This is an outline only, and should not be considered a substitute for my IRL information, charm, or awkwardness.
How iPads Can Help Children With Autism Learn and Play
photo (c) 2010 Kelly Nicolaisen
Leo's life was transformed when a five-dollar raffle ticket turned into a
brand-new iPad. I'm not exaggerating. Before the iPad, Leo's autism made him
dependent on others for entertainment, play, learning, and communication. With
the iPad, Leo electrifies the air around him with independence and daily new
skills. People who know Leo are amazed when they see this new boy rocking that
iPad. I'm impressed, too, especially when our aggressively food-obsessed boy
chooses to play with his iPad rather than eat.”
Benefits: Accessibility and Convenience
No cursor analogy – direct touch screen
Fine motor ease – stylus/mouse not required
Can replace backpacks – and cupboards -- of activities
Entry level iPad
2 (16 GB Wi-Fi) is $499
Original iPad 16
GB currently on eBay for less than $400
devices (Vantage, DynaVox, etc.) cost several thousand dollars
So much more than an AAC device
Screen is big enough to be digital parallel to paper or books
Keyboard and screen are in same space, most kids aren’t touch
typists, child doesn’t have to move eyes from screen to keyboard
Apps are organized, accessible, predictable framework
Apps break learning down into discrete chunks, topic areas
Learn without needing to read, including read-aloud books
Learn independently or with support
Incidental learning opportunities abound
Benefits: Social and Play
iPads are cool, they attract other kids – including siblings
Can support social skills, formally and informally
Independent leisure time
Is an iPad a Good Fit?
Informal evaluation: Borrow one, or go to an Apple store
Formal evaluation: SETT framework
(Student, Environment, Tools, Teaching)
Formal evaluation: AAC
(Assistive and Augmentative Communication) at school, SLP, university
Kids who can benefit might not qualify under AAC – e.g., Leo can
speak “fluent requesting”
Does not suit all fine motor needs, e.g., those who require tactile
feedback to use touchscreens
Makes me laugh, for kids like Leo, for whom independent is good!
Valid concern for kids who crave screen time (so ... Screen Time
Savvy kids can be experts, help other kids, mentor
Mali's portrait of our friend
Liz in Toca Hair Salon
Every so often, Mali likes to pipe up about the apps that she likes, too -- when she's not lecturing random tolerant pediatricians about microorganisms or declaring that she's played soccer for two years and so has learned everything there is to know about the sport. When she negotiates with her siblings (and her parents) for iPad time, it's usually so she can dive into BrainPop, TocaBoca Hair Salon, or President vs Aliens.
Toca Hair Salon ($.99) is from the same folks who brought us Leo's perennial go-to freeplay app Toca Boca Tea Party. I could tell you more about it, and why it has Mali currently declaring that she will be a hair stylist when she grows up, but Mali is determined to tell you about its merits herself (and no, I did not prompt her to turn the iPad around and give this demo from the viewer's perspective -- she did that spontaneously.)
She will also play the U.S. presidental history trivia game Presidents vs Aliens ($.99) indefinitely, which surprised me, as she's never previously shown much interest in topics like politics or history. But she enjoys this app -- and, thanks to playing it, can now identify all the U.S. presidents by sight (or official portrait), the order in which they held office, and their political party. Plus she now refers to Nixon as "Tricky Dick!" This app is by the same developer who brough us Stack the States and Stack the Countries, which all three of my kids enjoy. PvA video demo, with Mali once again in Game Show Host mode:
The app that makes her fight for the iPad every day, though, is BrainPop's (Free) daily animated movie. I've never seen anything like these cartoon conversations between a young guy (Tim) and his robot companion (Moby) for helping young minds easily slice, dice, and digest complex topics, ranging from Airplanes to Hurricanes, from the Science of Boogers to Napoleon.
The best part for me is not Mali's learning, though that's great, too -- it's that we get to have great big rabbit hole conversations afterward, like why was Napoleon exiled twice, why they chose incredibly isolated St. Helena for his second bon voyage (Elba being right off mainland Italy, easily checked and compared in Google maps), how St. Helena is the second-oldest existing British Colony after Bermuda, did you know that our country used to be a British Colony too ... yeah. It's good stuff, and all the tangents can be followed instantly if your iPad is online.
Recommended for igniting/feeding hungry little minds. Kids don't have to be readers to watch the movie, due to the narration, but the reinforcing quizzes afterward require reading or a literate assistant.
Back to Leo apps next time! Though I suspect the latter two apps might appeal to Leo's trivia-minded spectrum-mates.
All reviews are my (and my daughter's) opinion only. All apps were purchased or downloaded independently.