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## public enemy #1

Too black?  Jonah piped up from the backseat when Andy and I took him on this past Saturday morning’s car ride to transfer station.

I’d brought along a CD that my friend K gave to Boo for his 12th birthday, the soundtrack to the original Willie Wonka movie, and had just shown it to him.  “Wanna hear oompa oompa?” I asked him, because always there must be music.

Too black? was his answer.  I looked questioningly at Andy, who told me Jonah wants Public Enemy Number One, specifically their 1988 CD It Takes a Nation of Millions to Hold Us Back.

Evidently he has dubbed this CD Too Black, in much the same way that he dubbed Guster’s “Easy Wonderful” album Cranberry Guster.  Others retain their given titles – Diamonds & Pearls by Prince, for example, though that’s a mouthful for Boo.

Soon I realize why Jonah, King of Nomenclature, has chosen Too Black for the title of this CD.  It’s the second song on the CD, Bring the Noise,which starts out with “I’m too black, I’m too strong.”  My child has the most eclectic taste in music of any kid I know.  He has no shame, so he simply likes what he likes, whether it is a children’s song long outgrown by his neuro-typical peers or an old-school hip-hop gem from when his mama was in college.

He hasn’t been so great.  I didn’t want to write about it.  (If I had a nickel for every time I said that…)  The pendulum swung again, as pendulums are wont to do.

##### The period depends on the length of the pendulum and also on the amplitude of the oscillation. However, if the amplitude is small, the period is almost independent of the amplitude.

I started reading the whole page, all about pendulums.  I’m kind of following it, but then suddenly there’s all this gobbledy gook from math hell.

##### The difference between this true period and the period for small swings (1) above is called the circular error.

I leave the page & shudder.

At any rate the pendulum has swung again into 2-person-takedown aggressions and what I call his “desperate OCD” – the constant requests, lists of things he may want at any given time spoken as questions, over and over.  Train?  Car ride?  White soda?  Grandma’s house? Train?  – with the sound of tears entering his voice – bagel?  Car ride?  Daddy?  Train? almost immediately followed by an aggression….an insufferable why can’t you understand me frustration…?

I’d missed a Saturday visit, too, for a 5-day escape down to the Gulf Coast of Florida to visit & stay with M’s parents, and just after that missed visit the pendulum began its swing.  I know better than to play association here because there is never a rhyme or reason (I’ve thought about paying attention to moon phases), but I felt guilty anyway, and I missed Boo something awful.

This time, though, the pendulum seems to have swung back to the “good side,” where we like to hold it, polish it shiny, beg it to stay.  Saturday’s public enemy visit was a good one overall, but for this relatively minor incident, all captured on film.  The idea was to take a little video of Boo bopping along to Public Enemy, and I don’t need to explain to you what happened next:

Other than that we had a cool visit.  There was sandwich, transfer station, train videos on the computer, hugs, Oompa Oompa, potato chips, hot dog, and even a special swim-up bar with two open bottles of white soda and juice (which he preferred to sip in turns, one, then the other).

Yes, we spoil him in  silly little ways.  He knows he can’t get away with that shit at school.

I even got a so exciting video of his daddy clipping his toenails.  I say so exciting half-kiddingly because as some of you with kids like Jonah know, clipping nails on a child with autism is often akin to alligator wrestling, usually with similar results.

And yes, it is World Autism Awareness Day.  By now I believe we’re all aware.

I want World Autism Action Day.

Now we need to build a better system, stronger schools, (and better pay) for the teachers, the caregivers, for not only aspies but also those affected by classic and severe autism too — especially the desperate lost exhausted at-the-end-of-the rope clinging to the edge  parents of these kids who beat them up, the parents of the kids who are lost to them, the parents who hurry through their days with therapies, doctor appointments, poop smears, constipation, unending screaming, and sometimes a dull acceptance followed by intense ennui followed by the strongest love there is.  I know these days, I’ve lived them.

My heart breaks for so many people I’ve met on the classic/severe autism group on Facebook.  And so, for all of them, and all of you out there barely hanging on, I say:

Suck it, autism.

### 2 Responses

1. Great article, Amy!

Awed by your strength and grit to guide Jonah through autism.

Would’ve said more but it’s nothing that you already haven’t heard…

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2. The kids get a big kick out of the toenail trimming video. We laughed and I gave them a rash of crap because I still have to trim their toenails from time to time because they won’t. I think they are just lazy! They had a cool idea and that is make a Day in the Life of Jonah video covering everything from when he gets up in the morning to bath time and bed time. My kids have a question about Jonah and bath time. They finally got to the point where they can bathe themselves, but they understand Jonah might need someone to monitor his bath activities and help him out in the tub, so they are curious if he bathes himself or do you still need to make sure he is doing a good job with the wash cloth and shampoo?

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