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.

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.

If I could choose my own personal  “Groundhog Day,”  I think one of the front-runners would be yesterday, the Ides of March — Saturday, March 15, 2014.

The Saturday before that, March 8th, was awesome too.  Jonah’s birthday was the day before and he’d already had two parties – one in his classroom and one at his residence.  My mom brought him three Happy Birthday balloons and I brought him a Buddha shirt I’d grown out of and a bunch of “octopi.”

He also got The Jungle Book DVD from Grandma – his new favorite movie (though he still adores Willie Wonka and the Chocolate Factory from 1971) and a whole bunch of birthday cupcakes.  In this 21 second video you can see him surreptitiously steal two more cupcakes whilst cramming one in his mouth — then he neatly arranges them on the plate just before the video ends.  Luckily there were more in the fridge.  I am narrating and I sound like a little kid:

But yesterday was even better.  Andy had taken him the night before, as he often does on Friday nights, and Jonah had been really good and cooperative for him.   I spoke on the phone with him that evening and Jonah used one of his full sentences:  I want pepperoni please.  He even told me he loved me without me saying it first.  I love you mama.

So when my mom and I arrived for our visit, we were in a hopeful mood, anticipating a happy time.  Jonah was excited but not super screechy or manic, as he can sometimes be.    He sat at the table with us for quite some time, eating his “tune-fish sandwich” and chips with a juice box, then he requested car ride.

There’s a loop Andy and I take on the car ride, to the recycling center (transfer station) and around by the river before going back to his apartment.  Usually Jonah is in the back relentlessly requesting music on?! which always means “turn it up!” but this day he was content with the volume.  Usually Jonah wants more car ride, meaning two loops, but this day he was content with one.  Even more amazingly, at one point I turned to see how he was doing in the back; he smiled and cocked one hand back as if to hit me.  I caught my breath and waited for what he used to call swat, for some reason not stopping him.  When his hand came down he simply touched my head, spreading his fingers to comb through my hair, again and again.  I nearly cried – he has never, ever, made a motion to hit me and touched me gently instead.

When we returned to the apartment he wanted bath, and went to the toilet first, crouching on it in his weird little way, both feet planted on the seat with his skinny little butt hanging down into the bowl.  After that he had fun in the bath, splashing around a little but quite pleased just to get clean and play with one of his octopus pals and the bubbles, and he even refrained from splashing water all over the floor and walls – a rare thing indeed.

In typical Jonah fashion he sprung from the tub and ran wet into the bedroom, jumping on the big blue bed.  I chased him with a towel and captured him in my arms, drying him off while he squirmed and giggled.  Then he got under the covers and put his head on a pillow, asking for quiet time.  So I climbed under the covers about two feet away on another pillow, and we faced each other, both of us smiling.

He got this little cat-ate-the-canary look on his face and reached his arm out to try to fish down my shirt and cop a feel, but I just laughed and tickled his underarm, making him withdraw the arm, giggling.  No mama boobie, he said, as if reciting something he’d learned and repeated many, many times.  That’s right, I told him.  No touching mama’s boobie.  But then it became a game, and I played along, tickling him every time his arm reached out to me.  Finally he sighed and, with a small smile, tucked his thumb into his mouth and hooked his pointer finger over his nose.  I imitated him (God how I loved sucking my thumb when I was little) and our eyes met, both of us grinning behind our thumbs.

He doesn’t suck his thumb that much anymore, though, and only did so for a few moments before reaching his hand out to me once more.  I thought he wanted to play our little tickle game again but this time he repeated what he’d done in the car –  gently he touched my hair, finger-combing its length in different places and messing it up a little.

Very good boy, he said.

Yes, Jonah.  Yes, you are such a sweet, 12-year-old, very good boy.

He was dry enough then and I handed him his clothes to put on – something he can do all by himself now, though he will often ask I need help please with socks and shoes.  He even wanted a certain shirt – the Willie Wonka one my friend K had given him for Christmas.  We went in the other room and he asked for The Jungle Book, which we gladly put on the DVD for him.  Then we danced around to I Wanna Be Like You, spinning, holding hands, and laughing.

After that he asked for train, and I knew he wanted to watch trains on the computer.  Thanks to all the railfanners in the world; they make very long videos comprised entirely of different trains coming and going.  There are an endless supply of these videos on You Tube, so Jonah tells me which one he wants – pointing and saying I want that one please (he’s just going by the photo), and I put it on.

This is a great discovery, as he will sit transfixed for 20 or 30 minutes watching the thrill of the train signal, the lights and bells, the striped gate moving down into its horizontal position, the approach and increasing sound of the engine, the cars whizzing past (usually decorated with graffiti), the caboose growing ever smaller as it moves away, and the striped gate going back up into stillness — only to be followed by another train, and another train, and yet another…a virtual parade of locomotive ecstasy into which Jonah happily disappears.

It was the first time since we brought him to Anderson on that hot day in August 2011 that I really, really wanted to take him back home.  I didn’t cry when we left but I could have easily done so, tears of joy and tears of longing.  I know in my heart this could just be a swing of the pendulum, though the swings are growing slower and smaller, like those little silver-ball motion machines on desks of executives that tap tap tap until the tapping becomes imperceptible and finally stops altogether.  I also know he is where he is supposed to be, the best place for him to continue on the path to independence, learning appropriate behaviors, and growing into his full potential with people who are educated and dedicated to helping him do just that.

I don’t want to think about it too much aside from feeling an enormous gratitude for the Anderson School and its staff — for Jonah’s daddy, for my mother, for all the persistence and patience and learning and love Jonah has received since we broke our hearts in two and left him behind to live with strangers… trusting, praying for them to love him, pleading with divinity to watch over him.

And now I have nothing to say but thank you, and nothing to remember about this visit but joy.  It is an astounding, beautiful thing.  My sweet little Boo.  My baby-est angel.  I love him more than anything in this world.

Thank you.