Spectrum!: The Musical

It turns out that our child is definitely on the Spectrum. It turns out that she was this whole time, which is fascinating and embarrassing- her best friend figured this out before we did. Her best friend is also on the Spectrum, I should mention. Her best friend has something called PDA, a Spectrum condition, like Aspergers. Her best friend's family, who are our best friends here in the UK, are very familiar with the behavior that qualifies a person as having PDA.

"She doesn't do things when you tell her to, does she?" my daughter's best friend's mother, who is my friend, asks me. It seems a strange question: who's child does attend to their commands the first time? Who's kid is like that? I want to hand those parents a certificate of achievement right before I punch them in the neck.

"Well no, but I've never met a kid who will just do things, have you?" I say.

"Um, yes. Not my child (the best friend, remember- the one with the PDA,) but I do watch a lot of children. It 's my job." My friend watches children for money, and she's very good at it: not one of the children in her charge has ever lost a finger. Not one. "Most kids will actually do something you tell them to, after they have a little moan about it."

"Oh" I say. Our daughter will go on and on, she will come up with many if not every excuse to avoid doing something. It's almost reflexive now. When she was younger she would claim that her legs had stopped working to get out of walking half a block. She committed to the lie, showing me her non-working legs and hitting them with her fists and sliding around the floor like a grumpy mermaid.

My friend shifts a bit, showing her discomfort at having to state the next part. It's very British of her, though I can't think of a comfortable way one could say what's next: with a Herald? with back up singers? Via sky-writing? "And she can...I don't know if you've, uh, seen this...she can be somewhat manipulative, can't she?"
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I'm embarrassed now, but not by my friend: retroactively by my daughter. I remember when she was younger and her father, a US Army reservist (I can't explain how I ended up married to one of those without charts, and this isn't one of those posts,) was deployed for a year. I was a single mother dealing with a very smart girl child who had Sensory Processing Disorder, period.  The girlchild plays violin, and sometimes she loves to and sometimes she would rather do anything else, up to and including picking up old cat vomit that our old cat had vomited up days before. But I was determined to get her to practice, I insisted she practice, we were paying for lessons for her because she wanted them so by Dionysus, she would practice...except that she knew I was stressed out from being the single mother of Herself, so she asked me questions about my thoughts and my day and how I felt about what happened at her cousin's house and the terrible news about the Mayor, who was a dick, and what the teacher's union might do about the new contracts, and what I might do if there was a strike, because it would be difficult on one hand- home schooling, coordinating what we should be reading, scheduling with lessons with her other best friend so that we could get some grocery shopping done on a rotating plan- but on the one hand it would be easier, there would be less struggle in the morning because we could get up later and I might be able to let her have the hour and a half she needs to put her clothes on...

"Things like putting her clothes on- that's a big one, right?" said my friend, interrupting my thoughts.

"How did you know I was-?" I said. Once she got old enough to dress herself, getting out of the house in less than two hours was an ambition I had, similar in strength and sheen to the ambition I'd once had to win an Oscar: I was going to do it! Everyone could just watch me- all I need is a stage and a dresser full of fuzzy clothes with the tags carefully pulled out, and maybe a three-hour head start, and I'd do it! The fantasy was almost glamourous...oh shit. "Yeah. And the tags in the clothes, yeah. What else?"

My friend, mother of the best friend of my daughter's, smart mother and all-around great person, said "She'll even scream and freak out and run away, become non-verbal, flail her limbs, punch or hit a person-" She stopped and made the need-I-say-more smile of apology.

When you look up PDA on the Internet and get the full, knowledgeable list of signs for this...condition? Label? Mode of Being? Once you get the list and match it up with your lovely child, and drop your onion-layers of protective rationalization or insecurity or distraction or whatever it is that's kept you from examining the kid's behavior more intimately, you have no choice but to admit it: Your child has PDA, which is on the Spectrum. Your kid has much in common with those children who can't speak, who can't look anyone in the eye, who runs away for no reason. And now everything she does is seen through the Spectrum visor. It's a difficult one to look through- I wouldn't recommend it. But my daughter would.

"I'm definitely PDA. Ooohh, yeah. That is ssssoooo me," the kid says as she's filling out a PDA quiz sent to her by her best friend's mother, my friend. If the child herself is agreeing, what chance is there that it's wrong? Is there a chance that we're on the wrong track, and the girl is just chronically dehydrated? "That's me, Mom. I have Pathological Demand Avoidance." She looks kind of relieved, kind of determined. I ask her how she feels. "Good. It's kind of a relief to know it."

I'm making some fun here (I hope), but I don't wish to make this issue into a joke, big or small. Having a child on the Spectrum isn't fun at all. The demands of the world we live in are a source of constant struggle for those families, a struggle like climbing directly uphill with non-working legs. No wonder those children are grumpy mermaids; no wonder those parents are full of excuses and apologies. I'm new to this, embarrassingly new, but I get it- I've been the parent who gets looks at the playground, and had to apologize profusely as I drag my tantrumming child out of a birthday party, and kept my mouth shut when my girl insisted on leaving the house without brushing her teeth, which is anathema to me. I've felt terrible at the end of each school year, bringing cookies to those administrators who had the most patience with her protracted lie-ins on their cots, praising those teachers who dealt with her whether I thought they were good at it or not.

So, this is the official Casting Call for my new project, called Spectrum!: The Musical. I need about ten kids, ages 8 to 16, to be the Grumpy Mermaids/ Cocooning Forest Creatures to back up my daughter's violin solos. Must be willing to bring their own tagless fleece jumpers and sing songs about...well, about not leaving the house, probably. This show will premier in the Autumn sometime. Or maybe Christmas, or Twelfth Night. Valentine's Day isn't out of the running...I'll get back to you about it, Ok?