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Introducing Rhythm

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.

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