I still didn't know who to cast as the lead. It was really difficult, in that every cast member so far was non-compliant or non-verbal. Naturally the verbal ones were the least malleable, which is an understatement. The verbal ones were non-compliant on principle. Two of the verbal cast members refused the acknowledge that they had legs: they would only roll into rooms and looked at a person with poison eyes if it was suggested they could stand if they wanted to.
"Clearly you're not noticing that my legs have been amputated just below the hip joint. That is very rude" said Caleb. He was a handsome lad of about 16 whom I had thought might make a good Jake the Wonderful in Spectrum! But perhaps not. There was still time to decide. If there's one thing that dealing with Spectrum youths taught you, it was that there was always time- it just wasn't yours.
I sighed. Two others- Kit and Malinda- also sighed, then watched for what I would do next so that they could imitate it. Malinda was the one who came with the mimicing trait but Kit was catching her up, to the point that Kit could now anticipate what Malinda would mimic next and mimic it herself just a half-second earlier. It made Melinda furious, and she'd run around the room disrupting things like scripts and extra-thick pencils and the Play-Doh station, causing the remaining cast members to divide themselves into their usual camps: Join-the-Chaos or Run-Away. It was roughly halfsies in this family-to-be, which was good. Part of my brain was convinced that we could run two rehearsals, one for the real musical and one for the fake one, by simply having the Run-Aways produce their own shadow show at the same time as the real one, only in the basement space of the old St. Emmanuel's School for Unresponsive Boy-Children (not it's real name.) I imagine I can have them perform it without actually having anyone see it, which is the real sticking point for the Run-Aways. They would express that very point whenever I mentioned certain things, like "audience" or "show night" or "performance" or "people" or "thinking"or "cast" or "curtain time" or "musical" or "dance". "Jazz hands" were an acceptable thing to say, as long as you didn't mind the entire group flipping their hands around like epileptic dolphins for up to a half-hour. They all looked ridiculous when a strong round of Jazz Hands was collecting their normally scattered focus, but then again they didn't look half as ridiculous as a stage full of professional performers doing the bona fide Jazz Hands.
"Ok, lets work on the opening one more time. That's a good place to start, right? The beginning." I said this in my best Jody the Tour Guide voice, as I've found it's the least offensive tone to the largest amount of cast members (two.) Sometimes when I use that voice with them, no one interrup-
"Technically the beginning can be anywhere along the storyline. It doesn't matter where one starts but how well the story is told and how well the narrative circle can be joined. For instance, if you look at episode twelve of season 4 of Doctor Who, modern, it starts at almost exactly two-thirds of the way through what becomes the full narrative of that episode." says Jolene. I nod, of course, because I want to do the opening one more time, but Jolene's best friend/worst enemy (depending on how much they talk about their favorite television show) has something to say.
"Bullshit! Bullshit shut shit bullshit Jo!" Apu yells. The non-verbals pull their heads back in under their tables, which is a shame- it was the first time they'd put any body part outside the protective shade of the craft table in over an hour. But Apu is a yeller- he, like many with ASD, is loud even though he doesn't hear it that way. His personal volume calibrating mechanism just doesn't work like...it doesn't work, is all. I've gotten so used to it that when the group goes outside our protective doors to procure more snacks or for the obligatory fresh air (my idea, their obligation) I end up yelling right along with Apu. I've wondered if it's really that it's my volume control that's wonky rather than his- a common reflection about all kinds of Spectrum traits, if you stick around. You can't help it. For example, I never used to list chapter and verse of any specific puzzle. I was the talker, keeping it terse and cordial and not feeling the need to remind the listener that a "terse and cordial" was a non-alcoholic drink from the early 20th century that was made of seltzer, liquified hay, blueberry gin, and two scant teaspoons of earth from anywhere in New England. The best part (or the worst, really) was that I don't know how I know that. All I know is that now anytime anyone says anything banal, I roll my eyes and think "How banal."
Banal conversation didn't used to bother me before I started my group- it was just a given of any regular, day-to-day day.
Kit and Malinda were waiting for my next utterance- Caleb was rolling back and forth with a faint smile on his handsome-lad face- Jo and Apu were in one of their daily arguments about story structure and how it related to television scripts versus blog posts- the non-verbals were under the table, a few eyes peeping out to look at me, waiting for me to ask something of them so that they could pull further back into the shade. It was clearly time for me to take charge, to make them all understand that I was the one who had authority in the room, and that there would be some sort of consquen-
"Just because I don't have legs doesn't mean I can't play Jake the Wonderful. But I think he should be named Jake the Legless, for obvious reasons" said Caleb. He was not rolling, looking at me with very serious eyes (everyone in the room, even the under-table peepers, could make Very Serious eyes at me like they'd studied at the London Academy of Dramatic Arts before joining my group. I didn't know, but I suspected that there was some secret conspiracy to that effect, where those who'd been diagnosed as being on the Spectrum were sent away for a weeks-long intensive from Sir Ian MacEllan on how to throw Very Serious eyes. I suspected Sir Ian was a big softie for the ASD folk.)
"Thanks, Caleb. Jake the Legless is a better name. So if everyone could move to their places-" I said, being careful to make sure that the peepers didn't know I was watching them, I moved back into position behind my keyboard. "Then we'll start at the top. Everybody ready?" There was a cacophany of noises to let me know that they were, as far as anyone could say, ready. "And one, and two-"
"PRIME, PLEASE" yelled Jolene and Apu simultaneously.
"Start at the fouth integer" said a voice from the under-table dimness. I didn't know which one said it so I was impressed with all of them.
"Sorry!" I said. "And five and seven and eleven and thirteen-" and started playing.
Thursday, January 19, 2017
Tuesday, January 10, 2017
How to Feel, or: Hurting More
I have to take stock for a moment:
I have a chronic, and I hurt every day. Also, I'm exhausted, always. Those things will make your perspective (or your lack of perspective; honesty is best here) skew towards whatever it is in your world that isn't working perfectly right then. It can be anything: your spouse said a thing that you could infer was some shade thrown, or your kid is being childish, or your dogs just suck for no particular reason. So then you have to talk yourself down, as if your rational self was Kevin Spacey in The Negotiator: stiff with intelligence, intense, compelling, kind of a dick. Meanwhile you're on the edge of a building, sobbing into a stranger's cell phone about how things are never, ever, ever going to improve, and your inner Kevin feels a revulsion for the blubbering one. But your inner Kevin does the work and gets your sad self down from the building's ledge, again. (I usually see my sad self as being in a tree rather than on a ledge, as if it's more of a lost kitty than a potential suicide; the image of Kevin Spacey with a bullhorn yelling at a person in an ordinary public-park-type tree is much closer to the perfect metaphor of my inner struggle than the building ledge image.)
It kind of works, right? You have your own version of the above, right? Everyone has to deal with feeling bad or getting it wrong or losing their luck or their nerve. Except for one thing, the thing that makes the wheel go round: our inner Kevin is a douchebag, sneering quietly at our traumatized tree-sitter, and that means that we sneer at our own emotions. We sneer at the weakness in our own psyche, because it's the normalized thing to do. No one cries with abandon after the age of five- can you imagine? What kind of freak would we be if we just cried with our eyes up and our hands on our hearts instead of over our faces to hide whatever raw expression we're wearing? We learn it, and it keeps us from letting it really go.
This week has been difficult. Actually the past two weeks, beginning with New Year's Day. I walked my dogs along with friends in the inhospitable British winter darkness, around 4;00 PM. When I got back my hands had turned white and purple-blue (I have Reynaud's syndrome.) When the blood came back into my hands, it felt like rats were chewing my fingers off for fifteen minutes or more, and all I could do was lie on the couch and cry. I couldn't unbend them and hold them against the hot water bottle my husband had brought me because I was worried that it would hurt more and cause them more damage. Then I spent the remainder of the day- of the next day, too- making excuses for my weeping because crying for pain isn't something one should do unless one is having battlefield surgery to amputate your exploded leg.
I went to the doctor for my ten-minute appointment that I was lucky to get. The doctor listened to my story and even my semi-theories about Rheumatoid Arthritis that I'd semi-formed while Googling "REYNAUD'S PHENOM RHEUM ARTHRITIS FINGERS?!? in my free moments. She told me to make an appointment to have blood taken, and I have. Meanwhile, a mere hour after this conversation, I got a call from my child's school's special education co-ordinator or counselor or team leader or whatever she is. She's empathetic and disciplined, and overworked because of the Council's slashing of funds for special needs students (because it's not like they were using them for, like, everything.) She told me what had been said at my offspring's most recent talking-to, which had happened the day before:
Mrs. School Empath:
I told your child that the path they are choosing is one that will lead inevitably to failure.
What I Heard:
I think that between you and your child I can't decide which of you is the bigger fuck-up.
What I Said:
Yes, of course- I understand- this issue is long-reaching and we have to be direct in our actions...
Mrs. School Empath:
Your child is extremely clever and has figured out various strategies for getting out of any amount of work.
What I Heard:
I'm going to blow smoke up your ass about how smart your kid is in the hope that the flattery will make you listen more closely; now that I've done that I can tell you that your only child is a real asshole.
What I Said:
Yes, but the child needs to focus on their education- I know, I know- I'm so sorry about her learning to not work...we talk to her at home, too-
Mrs. School Empath:
We need to see some accountability on your child's part, and we're doing what we can now to build that feeling. I believe that we'll be able to help your child so that they can work up to their ability, which is very high.
What I Heard:
If your kid doesn't start toeing the public-school, uniformed, pre-regimented line, they are going to be kicked out. Onto the street. I mean "kicked out" literally, BTW...GOD, you are the worst parent.
What I Said:
Thank you.
It wasn't the worst thing that I've ever heard about my baby, but it was close. And it wasn't the first of those speeches, either: the child has ADHD, complete with all sorts of other Spectrum symptoms and sensory neediness. It gets in the child's way, as above. And even though I know there's a real- non-tangible, but real, very much so- reason for the problems, I hear about it and there are two things I'm bound to do: the first is when I'm feeling full and fine, because something awesome just happened that bolstered my sad self, and then I listen with equanimity and make a plan on paper. The second is more frequent because my sad self hasn't had any smoke blown anywhere near it's ass lately, and in that case I just sit there and try to make the right sounds until it's over. Then my inner sad self crawls up into a tree, and my inner Kevin Spacey has to come out and holler at the sad one until it gives up, climbs down. It's a stupid and destructive cycle and I'd like out, please.
I'm fairly sure that everyone knows what a diva Mr. Spacey is, or is supposed to be; I can tell you that the one in my head needs his perfect organic seedless green grapes- gently misted, not dripping thank you very much- in his trailer promptly at 2:00 every day. He is the kind of attention suck that needs everything to be about him, which explains the sneer and the loaded tone he uses when he's on the bullhorn. It explains why I feel so shit for feeling so sad, as if sad is a half-eaten sandwich I opted to pick out of a dumpster when there's perfectly good sandwiches at home. I'm sure this leads somewhere. Can I offer my Inner Spacey a better role in something? Would he be better as my panic voice, pulling out that bullhorn only when I don't check both ways when crossing the street and hear a car horn I wasn't expecting? If Inner Kevin is watching for mildly alarming events, he won't be all over sad self's ass.
Presumably I can just shed a few tears in peace and quiet. I'm hoping that once I do that, I'll be able to make a plan, write it down, and maybe find the child for a big, squeezy hug.
I have a chronic, and I hurt every day. Also, I'm exhausted, always. Those things will make your perspective (or your lack of perspective; honesty is best here) skew towards whatever it is in your world that isn't working perfectly right then. It can be anything: your spouse said a thing that you could infer was some shade thrown, or your kid is being childish, or your dogs just suck for no particular reason. So then you have to talk yourself down, as if your rational self was Kevin Spacey in The Negotiator: stiff with intelligence, intense, compelling, kind of a dick. Meanwhile you're on the edge of a building, sobbing into a stranger's cell phone about how things are never, ever, ever going to improve, and your inner Kevin feels a revulsion for the blubbering one. But your inner Kevin does the work and gets your sad self down from the building's ledge, again. (I usually see my sad self as being in a tree rather than on a ledge, as if it's more of a lost kitty than a potential suicide; the image of Kevin Spacey with a bullhorn yelling at a person in an ordinary public-park-type tree is much closer to the perfect metaphor of my inner struggle than the building ledge image.)
It kind of works, right? You have your own version of the above, right? Everyone has to deal with feeling bad or getting it wrong or losing their luck or their nerve. Except for one thing, the thing that makes the wheel go round: our inner Kevin is a douchebag, sneering quietly at our traumatized tree-sitter, and that means that we sneer at our own emotions. We sneer at the weakness in our own psyche, because it's the normalized thing to do. No one cries with abandon after the age of five- can you imagine? What kind of freak would we be if we just cried with our eyes up and our hands on our hearts instead of over our faces to hide whatever raw expression we're wearing? We learn it, and it keeps us from letting it really go.
This week has been difficult. Actually the past two weeks, beginning with New Year's Day. I walked my dogs along with friends in the inhospitable British winter darkness, around 4;00 PM. When I got back my hands had turned white and purple-blue (I have Reynaud's syndrome.) When the blood came back into my hands, it felt like rats were chewing my fingers off for fifteen minutes or more, and all I could do was lie on the couch and cry. I couldn't unbend them and hold them against the hot water bottle my husband had brought me because I was worried that it would hurt more and cause them more damage. Then I spent the remainder of the day- of the next day, too- making excuses for my weeping because crying for pain isn't something one should do unless one is having battlefield surgery to amputate your exploded leg.
I went to the doctor for my ten-minute appointment that I was lucky to get. The doctor listened to my story and even my semi-theories about Rheumatoid Arthritis that I'd semi-formed while Googling "REYNAUD'S PHENOM RHEUM ARTHRITIS FINGERS?!? in my free moments. She told me to make an appointment to have blood taken, and I have. Meanwhile, a mere hour after this conversation, I got a call from my child's school's special education co-ordinator or counselor or team leader or whatever she is. She's empathetic and disciplined, and overworked because of the Council's slashing of funds for special needs students (because it's not like they were using them for, like, everything.) She told me what had been said at my offspring's most recent talking-to, which had happened the day before:
Mrs. School Empath:
I told your child that the path they are choosing is one that will lead inevitably to failure.
What I Heard:
I think that between you and your child I can't decide which of you is the bigger fuck-up.
What I Said:
Yes, of course- I understand- this issue is long-reaching and we have to be direct in our actions...
Mrs. School Empath:
Your child is extremely clever and has figured out various strategies for getting out of any amount of work.
What I Heard:
I'm going to blow smoke up your ass about how smart your kid is in the hope that the flattery will make you listen more closely; now that I've done that I can tell you that your only child is a real asshole.
What I Said:
Yes, but the child needs to focus on their education- I know, I know- I'm so sorry about her learning to not work...we talk to her at home, too-
Mrs. School Empath:
We need to see some accountability on your child's part, and we're doing what we can now to build that feeling. I believe that we'll be able to help your child so that they can work up to their ability, which is very high.
What I Heard:
If your kid doesn't start toeing the public-school, uniformed, pre-regimented line, they are going to be kicked out. Onto the street. I mean "kicked out" literally, BTW...GOD, you are the worst parent.
What I Said:
Thank you.
It wasn't the worst thing that I've ever heard about my baby, but it was close. And it wasn't the first of those speeches, either: the child has ADHD, complete with all sorts of other Spectrum symptoms and sensory neediness. It gets in the child's way, as above. And even though I know there's a real- non-tangible, but real, very much so- reason for the problems, I hear about it and there are two things I'm bound to do: the first is when I'm feeling full and fine, because something awesome just happened that bolstered my sad self, and then I listen with equanimity and make a plan on paper. The second is more frequent because my sad self hasn't had any smoke blown anywhere near it's ass lately, and in that case I just sit there and try to make the right sounds until it's over. Then my inner sad self crawls up into a tree, and my inner Kevin Spacey has to come out and holler at the sad one until it gives up, climbs down. It's a stupid and destructive cycle and I'd like out, please.
I'm fairly sure that everyone knows what a diva Mr. Spacey is, or is supposed to be; I can tell you that the one in my head needs his perfect organic seedless green grapes- gently misted, not dripping thank you very much- in his trailer promptly at 2:00 every day. He is the kind of attention suck that needs everything to be about him, which explains the sneer and the loaded tone he uses when he's on the bullhorn. It explains why I feel so shit for feeling so sad, as if sad is a half-eaten sandwich I opted to pick out of a dumpster when there's perfectly good sandwiches at home. I'm sure this leads somewhere. Can I offer my Inner Spacey a better role in something? Would he be better as my panic voice, pulling out that bullhorn only when I don't check both ways when crossing the street and hear a car horn I wasn't expecting? If Inner Kevin is watching for mildly alarming events, he won't be all over sad self's ass.
Presumably I can just shed a few tears in peace and quiet. I'm hoping that once I do that, I'll be able to make a plan, write it down, and maybe find the child for a big, squeezy hug.
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