The Never Normal

So even though I’m not a super duper Catholic, I decided to give up soda for Lent this year.  Now you may be thinking “what the hell kind of sacrifice is that” but trust me, I love love love my “sodee” and even though it’s bad for me it’s about the only substance-vice I have left.

So at 11:59pm on Saturday, April 19th, I was all about cracking open a tall Mexicoke in a glass bottle and by 12:09 that baby was gone.  AHHHHHHH.  Then I went to bed.

Mom & I didn’t go see Boo that day because Andy brought him up on 4/20 for Easter.  Jonah’s been mostly rocking the good side of the pendulum, but for the past few days he has been kind of lethargic too.  I hate to say it and many of you will understand that while you do not in any way want your child to be ill or hurt-y in any way, a vaguely sleepy aggressive autistic kid can be a wonderful thing.  Magical lethargy.  There are nurses who check him every day, and he has a doc appointment coming up, so we weren’t too worried.

And so when Jonah first arrived, he’d had a good night’s sleep and had taken 2 naps the day prior, one with his dad on a visit and one at his residence.

Lethargy or no, he did bound up the steps to see grandma and me, though at first he whisked by us to see what’s new in the house.

The Easter bunny had left baskets at both my mom’s house and at mine, so Jonah sat contentedly on the counter, surrounded by ridiculous amounts of candy but reaching for none except the octopus my mom got him.

(I honestly have no idea how to get pictures off my phone, and yes I am that dumb.  Once I figure it out I’ll insert them in this post).

He was so funny.  Here he is with his pile o’ candy and chocolate, and he looks me straight in the eye and says, sweetly, brownie?

We didn’t have a brownie (I had brought him some homemade ones last week (homemade for me means making a mix out of the box), so he settled for car ride instead.   Either there were no trains running because of the holiday or we just weren’t lucky, but the car ride satisfied Boo and we headed back, directed by him to play radio this time.

When we arrived back at my mom’s, Jonah said wanna take a bath? and so I went up to do his bath.  My mother followed me upstairs and when we were testing the water and getting the bubbles, Jonah stood looking at me in the mirror.  “What color is mama’s hair?” I asked him.

“Brown,” he answered.  Then my mom told me to crouch down, and she pointed to the top of my head.  “What color is this part of mama’s hair?” she asked.  “Tan,” he answered.  “What color?” my mom prompted again.

“Is grey,” he answered.  Mom thought that was a riot and a half, and she got Jonah laughing too. “You jerk!’ I yelled at her, though I couldn’t help looking at it all; I am really going grey.  Me.  Grey.  But I’m young, but I’m Gen X, we’re still the cool generation, right?

I dyed my hair last night.

After his bath, Jonah went to the living room to lie on the couch.  I covered him with two blankets and rubbed his back while he rested.  “Mama loves you, sweet angel,” I whispered in his ear.  He lifted his head up with a smile, then got up and went into my mom’s guest bedroom upstairs, where again I covered him up and he napped for a few minutes.

When he woke he seemed more animated and started to ask for car ride and Savannah (Andy’s parents’ dog) so it was time to go – for all of us.  I’d done nothing but sneeze and have allergy-ridden watery eyes the whole time.  I swear I am allergic to my mom’s cat or her house or something.  And so I said goodbye to my mom and sweet Boo and his daddy, and I returned home.

My mom made the most delicious ham with twice-baked potatoes, vegetables, rolls, and cheesecake.  Although and of course there was no sitting down to eat it all, she’d carefully packed bags full for both Andy and me…and when I did eat it, ’twas delicious!

I’ve heard since then that Boo is fine and doing well.  I’m in a peaceful state right now, spring birds sing-chatting outside my window, the house quiet, my work day just beginning.

It was a quiet, blessed, happy Easter.

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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.

From Wikipedia:  A pendulum is a weight suspended from a pivot so that it can swing freely.^[1] When a pendulum is displaced sideways from its resting equilibrium position, it is subject to a restoring force due to gravity that will accelerate it back toward the equilibrium position. When released, the restoring force combined with the pendulum’s mass causes it to oscillate about the equilibrium position, swinging back and forth. The time for one complete cycle, a left swing and a right swing, is called the period.

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 true period of an ideal simple gravity pendulum can be written in several different forms (see Pendulum (mathematics) ), one example being the infinite series:^[11][12]

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.

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