I recently introduced a new client– 7-year-old Rhythm, who has diagnoses of autism and epilepsy. He lives with his parents, older sisters, and a rambunctious young dog whom I’ll call Bounce.
My first night caring for Rhythm was rough on him. His mother scheduled me to come a bit early and eat dinner with the family, to give him a chance to get used to me before they left him alone with me, but he was obviously unhappy when I showed up, and retreated across the room. His mother tried to get him to come over and say hi to me, but I reassured them both that he didn’t need to engage with me right away.
There is, I have found, a fairly universal rule with children, which is that you can win them over if you’re willing to sacrifice your own dignity. In short, I have yet to meet a child who isn’t enchanted by some form of silliness. I don’t necessarily mean over-the-top clowning around here (I remember, as a child, being acutely embarrassed on behalf of any adult who acted too goofy, to the extent that it made me feel horribly uncomfortable around them). But children have good senses of humor, and they are different from adult senses of humor. Children also enjoy themselves with utter un-selfconscious abandon, and appreciate adults who are willing to do the same: to get wet or messy or muddy in pursuit of a good time, to break the rules of decorum, to ignore “you should” in favor of “let’s see.” It’s a different philosophy of life.
I have no objection to sacrificing my adult dignity in order to make a child feel more at ease, but it’s a little harder to do with the child’s parent’s around, as adults can misconstrue too much goofing around as a sign of immaturity or irresponsibility. The presence of Bounce, however, gave me a good starting point. Win over a kid’s pet, and chances are the kid will start trusting you, too. I don’t know whether animals actually are good judges of character or not, but people tend to trust their judgement. And I have yet to meet a cat or dog that I couldn’t get to love me.
So I petted Bounce and scratched behind her ears while Rhythm watched solemnly. Then I got down on all fours and played with her as if I were another puppy, complete with waggling rear end. Rhythm smiled. I let Bounce roll me over onto my back and place her paws victoriously on my chest, and was rewarded with a genuine giggle from Rhythm (granted, I had just let Bounce declare herself dominant to me, which was something I would have to fix if I ever wanted her to obey orders from me, but I figured we could sort that out later).
As the family prepared for dinner, I noticed Rhythm kept tipping his chin down to his chest and looking at me with his mouth pursed into a little “o.” His mom explained “he wants you to look at him over your glasses. He had a teacher who did that.” I obliged, mimicking his expression, and when that got a good response, threw in a few more funny faces. He clapped and said “ay!,” which I took to mean “yay.” His mom laughed. “She’s discovered your secret, buddy! You just love funny faces.” (By now, he has me trained in a regular repertoire of favorite faces to make, him prompting me to each one with a specific facial expression or motion of his own).
The family crated Bounce for the evening, ate, and headed out while Rhythm was still determinedly chasing food around his plate with his fork (he eats with fork or spoon, but slowly and a little messily due to poor motor control). Afterward, we went out to the back yard for a bit. He seemed pretty happy at first, looking at things, and generally ignoring me except for grabbing my hand whenever he needed stabilizing (he walks comfortably on level ground but needs to hold onto something or someone when climbing steps, etc.).
I don’t know what precipitated his unhappiness. Perhaps he asked for something and I wasn’t aware of it, or maybe it was just getting late, but he suddenly ran into his parents’ room and threw himself down on their bed. I followed him in and found him giving little hiccuppy sobs into the pillow. At first I was afraid he was hurt or felt sick, and asked what was wrong.
“Mama?” he said plaintively to me, “Mama?” I explained, in various words, that his parents were out and would be back after he went to bed (I gave him both that general statement and the specific time they would return and exactly how long that was from now, in case he had that kind of time/number awareness). I told him I’d stay with him until they came back. I asked if there was anything he needed. I offered videos or ipad use. He just kept repeating “mama” at intervals and sniffling. Remembering that his mother said he found touch calming, I tried stroking his back, but he pulled away from me and scrunched himself further into the bed.
I texted his mother to fill her in and ask if there was anything I could do for him. She suggested offering dessert and a bath (dessert was actually a requirement, as it contained his evening anti-seizure medication). The offer of a bath was what got him to finally stop crying. He didn’t seem happy, but he let me lead him into the bathroom, undress him, and help him into the tub, where he cheered up a bit. I fed him ice-cream while he sat in the bath, and he seemed much mollified, and even let me brush his teeth a tiny bit afterward.
While bathing, he took my hand and put it into the bathwater, moving it back and forth to create waves. He wanted me to continue doing so for quite some time, firmly grabbing my hand and getting me back on track if I stopped or tried a variation he didn’t like. He sometimes clapped along, at the rate he insisted I stick to for making waves– slightly faster than once per second, which I have come to think of as “his rhythm” and the inspiration for his nickname. He will often request that I clap, make waves, or do other things at that exact pace, for long periods of a time. I think if I cared for him more often I might risk of a repetitive strain injury!
We played like this for a long time– me leaning over the side of the tub to manipulate the water to his exacting standards. I experimented, too, with using the different settings on the hand-held shower-head to make different patterns of waves, and even made him laugh a few times by smacking my hand down into the water to make it fountain up against the side of the bath. A few times he got up and sat on the edge of the tub to see the water moving better. Finally, he seemed to be tiring. I let out the water and toweled him off, then had to chase after him as he ran off into his parents’ bedroom bed again. The whimpering and “mama’s” came back. Finally, I coaxed him into pull-ups and pajamas, and tucked him in with his pacifier, at which point he settled down to sleep.
I felt terrible, honestly. Apart from babies, I’d never had a child crying twice in one evening unless they were sick or injured. But when Rhythm’s parents came home and I anxiously described his evening, afraid they’d be upset at me for not keeping him happier, they told me that it sounded like a pretty typical night, and that he often got sad even with them around. Mom reassured me that he’d get more used to me, and also be much happier when they settled into their new home (they were new to this area) and were able to get all his belongings out of storage. Given how different this house must be from what he’s used to, I think he was actually handling things remarkably well! Autistic children are famous for going to pieces when something is different from what they expect, but it’s also been my experience with them that a few reassuring samenesses can go a long way towards helping them feel safe even in the midst of big changes.
The Baby Monster (a typically-developing toddler I babysit) has learned a new skill– saying “hi.” He says “hi” to just about everyone he passes now– one of the few recognizable words he uses around anyone other than his mother (he still pretty much babbles around me– a fair range of sounds, but no direct attempts at verbal communication). Unfortunately, he has also learned that doing so is just about the cutest thing ever, and when combined with a shy smile, it makes a truly lethal cuteness weapon.
I discovered his awareness of this fact recently, when he did one of the few things I will actually scold him for (such as grabbing for my eyeglasses or throwing food on the floor– breaking rules that I know he knows). Usually, I simply correct what he does wrong, like grabbing for something unsafe or trying to dismantle everything within reach, because I know he doesn’t know any better yet. But this time, I knew he was actively misbehaving, and I yelled at him. His response? Big eyes looking up at me, the most winning smile I’ve ever seen, and a quiet… “hi.” It was all I could do to keep a glare on my face and tell him that being a manipulative little terror won’t work on nanny. Seriously, it was ridiculously cute. I felt like I had superpowers just for being able to resist it.
This isn’t what I usually talk about in this blog, but it needs to be said.
There’s something wrong here. We’ve gotten away from the main point.
This happens over and over again. A member of a minority/disenfranchised/marginalized group gets shot. Or arrested. Or harassed. Or refused medical treatment. Often, severe damage is done to them. All too often, it ends in their death. It is, fundamentally and above all else, a tragedy.
Members of that group– black, or disabled, or Muslim, or LGBT, or female– write about it. They and their allies express pain, fear, bitterness, anger, sarcasm, snark, and resignation. They say “not again!” and “yeah, but what can you expect?” They’ve seen it too many times, and still it cuts too deeply every time.
Some people use hyperbole. Some people draw comparisons or give examples that are not accurate. People write things in emotional moments and don’t fact-check them. And debates begin. Generally among people who don’t belong to the group in question.
Was it legal? Did it make sense? Can’t you see why Zimmerman followed Martin, why Ashley X’s parents wanted to keep her small and easy to care for, why the cop misunderstood the person having a panic attack to be dangerous? People give counter-examples and statistics. They make excuses. The victim made mistakes that contributed to their fate. People point out cases where a straight white christian male had the same thing happen to them. There is a great deal of “yes, but” and “if only” and “this wasn’t actually about race/gender/disability” and “it could have happened to anyone, you know.”
And we get away from the main point, which is that a tragedy has occurred, and that tragedies of that nature disproportionately affect certain groups of people. Someone is DEAD… maybe because of a specific misunderstanding or prejudice or systemic injustice, and maybe simply because they made a mistake, or lost their temper, or were hard for someone else to deal with.
Here is what I know about the effect the Martin/Zimmerman case has had on my black friends. It has made them sad. It has made them angry. But most of all, it has reinforced their understanding that they have reason to live in fear.
Ultimately, it doesn’t make a difference that Zimmerman’s attorney never mentioned “stand your ground” or that “not guilty” isn’t actually the same thing as being told you made the right decision. It isn’t about whether Trayvon Martin (or Henry Louis Gates or Christopher Beatty) should have acted differently, or whether we can understand why Zimmerman did what he did.
It’s about being a member of a group of people who live with the constant knowledge that a bad day or a bad decision may someday cost them their life.
I am a small, white, not-visibly-disabled, educated, cis-woman currently dating a man. If I am in a bad temper and glare at a stranger…
…if I have a panic attack and scream something strange…
…or run away from a situation…
…if I show affection to the person I love in public…
…if I accidentally leave a store without paying for something…
…if I space out and wander onto someone else’s property…
…if I get drunk and act rude or stupid or even do something truly obnoxious like using someone’s yard as a bathroom…
…if I loiter outside a building out of boredom or while waiting for a friend…
…if I make a bad choice about where to hang out or who to talk to or look at or even if I insult someone or flip them off…
…if I happen to be in a bad mood when a cop pulls me over for speeding and I am slightly surly with him or her…
That mistake I make is unlikely to escalate to physical conflict. It is unlikely to end in my arrest, and even less likely to end in my death.
This is not true for many other people, particularly those who belong to an easily identifiable minority group. It is not true for the man I love. It will not be true for two beautiful girls I babysit when they grow up. It may not be true for any of the children I babysit when they grow up.
And that is what goes through the mind of black people when they hear that Zimmerman was found not guilty. “If I am careless… if I make a mistake… if I have a bad day… if I scare someone by accident or by how I look or because I’m not paying attention or because I get pissed off like any other human being… I may be killed for it. And the public will not mourn my passing. My killer may not even be held accountable for my death. Instead, people will bicker over whether or not my death was due to racism or to my own momentary stupidity. And either way, I will be dead.”
Can you imagine what having that thought-bubble hanging over your head every day can do to a person? Can you understand the bitterness, the despair, the dread, the psychological torture of living with those thoughts? The weight of having to constantly walk a straight and narrow line in the desperate hopes that it will buy you safety? The pain of knowing that your best efforts– to be ever polite and nonthreatening– may not be enough? The anger of feeling constantly watched, of never getting to simply relax in public and be your own unguarded self because you know that your actions reflect not only on you but on everyone else who looks like you or shares your demographic label? The fury and anguish of knowing that no matter how hard you try, some people will always believe the worst of you simply because of who you were born as, and worst of all, you probably won’t even know who those people are until it’s too late?
So don’t argue with me over the legal details of the case. I’m happy to be corrected about errors I make and misconceptions I have, but nothing changes the fact that this incident gave Black mothers in America one more reason to fear that their sons will not come home some night. And there is NO appropriate response to that other than to grieve.
I am so terribly behind on writing, I don’t even know where to start. I’m terribly behind on many other things in my life as well, and I don’t quite know how to readjust things so that I am accomplishing what I need to do, much less what I want to do.
Aside from that, I’ve been doing a lot of child-care lately. I now have another child I’m providing respite care for, a 7-year-old boy with diagnoses of autism and epilepsy. I’m going to call him Rhythm, because all his stims (both the things he enjoys doing and the things he enjoys watching) are done to a metronome-like beat that’s just a little bit faster than a second (to the best of my estimation). He enjoys videos of escalators, carousels, carnival rides, and children’s songs, and adores both the sound and sight of moving water.
He’s a sweet kid, and has been very patient with me as I slowly learn to understand his communication. He uses a handful of verbal words and two-word phrases, some more intelligible than others. He uses a handful of modified signs– eat, all done, music, potty– and a good deal of pointing, touching, and physically moving my hand to whatever he wants me to do. He has a communication device that allows him to select items from several categories of words, but it’s a bit clumsy to carry around. He can also select the things he wants to view on his iPad, with a bit of hand-stabilization from someone else. He adores when people make exaggerated faces, and will model for me whatever expression he wants me to do next, then giggle and applaud if I get it right.
The first time I visited the family, he curled up next to his Mom on the couch as we talked, and watched his iPad videos, occasionally looking up to eye me suspiciously. Mom and I assured him that I wasn’t a therapist or teacher, and she compared me to several previous care providers he had liked. He appeared unconvinced.
I was, admittedly, very nervous. Despite the fact that I’ve spent a good bit of time around autistic adults, and both my other charges have autism diagnoses, this was the first time I had ever interviewed to provide care for a “classic” autistic child. I caught myself staring at him and wondered if too much eye contact from me came across as threatening. I had trouble reading his facial expressions. His mother assured me that he enjoyed touch, both light and firm, but I still worried about startling him or making him feel crowded by my presence. I’m still struggling not to talk “down” to the kids I work with– whether or not they have disabilities, I find it hard to judge the appropriate level of speech for their age.
I also worried about making a good impression on the family (NT parents older sisters). They are as American as apple pie (as the saying goes), and being in their home was a slight culture shock for me. I’ve never actually spent much time with people like that– just seen them on TV. But not often, because I grew up with very limited TV access, among other oddities for an American household. So I was relieved when they didn’t immediately peg me as too weird for the job. Being able to “pass” for “normal” is a handy skill.
I was also worried, though, that I wouldn’t be willing to take the job. That the family would ask me to enforce harmful therapies or harsh punishments, or would call their son retarded, or something else I couldn’t tolerate. I’m prepared to work with people I don’t entirely agree with, and in some ways I hope to be assigned to families who I think can learn something from me, if I can manage to suggest the information with sufficient diplomacy.
Rhythm’s mom endeared herself to me by stressing, anxiously, that her boy was smart, even if he didn’t always know how to show it, and that he could probably understand everything being said around him. She’d obviously been taught a lot of the rhetoric I dislike about autism, and used some phrases that probably came from behavioral therapists and so on– but she was also very determined to stand up for her son and focus on his strengths rather than his weaknesses. When she brought up the topic of what she called “frustrating behaviors,” I told her that I believed that frustrating behaviors were generally the result of someone feeling frustrated, and I think I saw her relax.
I couldn’t tell how much Rhythm was paying attention to the conversation. I noticed that he used a sign unfamiliar to me several times while his mother and I spoke– the flat of his hand touching to his mouth (I know very few signs). And then signed it with increasing frequency. Finally, I asked Mom about it, and to her credit, she didn’t flinch. “He’s kissing you goodbye” she told me simply, without embarrassment or apology, then turned to her son and told him I had to stay a little longer. An inauspicious start, perhaps. But I couldn’t blame the kid for disliking the mere idea of me! I knew I had a challenge ahead to prove myself an acceptable companion. And I was ready to take it on.