The Never Normal

Sometimes I joke that I’m not Darwin’s poster child.  I’m scrawny, kind of weak, hyper-sensitive, and rather meek.  I have asthma, osteoporosis and a mild case of Marfan Syndrome.  In any given room, I’m probably not the fittest.

If I’d been born in 1869 instead of 1969, I likely would not have lived through childhood.  Everyone who knows me well is aware I have a near-obsession with Laura Ingalls Wilder, who wrote the Little House on the Prairie series of books about growing up as a pioneer girl on the prairie.  Back then every family seemed to have a passel of kids and inevitably, two or three never made it past infancy.

Laura’s baby brother, Charles Frederick, died when he was 9 months old.  Laura’s only son, never named, was only a few weeks old when he died.  And Laura’s daughter, Rose, lost her own only son when he was just a baby.  Laura’s sisters had no children of their own.

The Ingalls ancestry ended.

Back then, if you made it past infancy, you faced a myriad of other killers like Scarlet Fever, blizzards blocking trains (fuel/food) for months at a time, grasshoppers and crows destroying crops – starvation and illness and accident.  From all directions death came at you, all the time – and your “job,” essentially, was to survive.

As medicine advanced, people lived who otherwise wouldn’t have before.  Simultaneously, the Industrial Revolution started long paths of both invention and innovation, but also of contamination and pollution.  The weak ones survived, Darwin be damned.

Maybe things like autism are the result of the “weak ones” not only surviving, but also being exposed to God-knows-what in the air, food, and water.  I don’t know if I’m talking nonsense or not, but I’ve been thinking about it all.

Seems to me we enjoy looking back arrogantly and laughingly at things we used to believe.  Can you believe we once thought the earth was the center of the universe?  That leeches could cure illness?  That cigarettes are good for you?  But now, we know better.  Right?  Probably not.  In 150 years they’ll be looking back just as disparagingly and laughingly at things we “know to be true” today.  We’re in the infancy of understanding autism, I’m afraid.  In some ways I’m as much a pioneer, like it or don’t, as Laura Ingalls Wilder.  Maybe that’s why I’ve always felt drawn to her.

Thus ends the preface of the story of Jonah this weekend.  His school had a “Harvest Festival” on Saturday, so my mom, my aunt, my cousin D and me headed down to visit.  What we didn’t know is that the last 20 minutes of the ride would take an hour and 20 minutes to journey.  There was a wool and sheep festival at the local fairgrounds, and everybody was headed for the herd.  It was interminable, the cars crawling like ants, people on foot passing us just like in the very beginning of Office Space.   At times I actually put the car in PARK.

Eventually we called Andy and decided to go separately and meet in Jonah’s classroom.  There we saw Jonah’s cool teacher, who told us Jonah was very bright; she gave us big piles of his art and worksheets.  He gets all the math correct, evidently, and can even write (with all the skill and care of your average physician).

Part of the harvest festival schedule was an invitation to view the brand new recreation center… which I guess we’ll have to check out some other time, because we were so late Jonah had already eaten lunch at the recreation center and was headed back to his house with T, one of his caregivers.  When we saw him, we overwhelmed him, I’m sure.

Daddy and mommy and grandma and Aunt T and D…all come to visit, all wanting hugs and kisses.

D hung back, smart and patient, knowing we ought not to be crowding in on him.  But damnit, I’m his mommy and I wanted to hug and kiss my boy.  At any rate he survived the converging mass and almost immediately asked for apartment (Andy’s place), so we walked to our separate cars and drove to the apartment, me riding with Andy and sitting next to Jonah.  We sang Barrel of a Gun and Keep it Together on the way, me reaching for his hand, he singing loud and right in tune, staring at me and grinning.  So far, so good.

At Andy’s apartment, Jonah stripped all his clothes off almost the instant he passed the threshold. 

Bath time!

Happily he gobbled yummy light green grapes, a sandwich, Lindt chocolates (only the best for grandma’s boy), and caffeine-free black soda.  Then he got all hyper and ran into the bedroom, jumping on Andy’s bed and shrieking as we tried to dry him off.  He put on his big-boy underwear and dressed himself almost completely, then requested car ride?

So we planned to take him to duck park, which I should add to the glossary, since he goes there a lot these days.  It’s a local park not far from Andy’s place. My mom and Aunt T and D followed Andy, Jonah, and me to the park.  But when we got there Jonah suddenly acted all panicky.  No duck park! he cried.  More car ride?

I recognized the ridiculousness of the other car following us around as we gave him a car ride and I came to the frustrating conclusion that this visit was over – without nearly enough time spent with Jonah.

So we left.  I drove us all home in the rain, crying for the first 15 minutes or so, quietly, my tears rolling unchecked to drip on my jacket and jeans.  After a while I stopped crying, it stopped raining, and we stopped at Love Apple Farm to buy home-made peach-apple pie and fudge.

Andy gave him his car ride and brought him back to the apartment and, eventually, back to his house at school.  It is always Andy who has to hear Jonah crying – sometimes asking for home – when he leaves his son behind.  Andy has a certain quiet strength and presence that belies the pain I’m afraid he struggles with a lot.

On Sunday at Andy’s, Jonah was very aggressive and really hard to handle.  Andy and I are both wondering what’s the right thing to do here.  Are we visiting too often?  Do we have to leave him be for a while so he can acclimate, even if  “a while” means a month?  I will call his behavior specialist tomorrow, and we’ve got a meeting coming up at the school about Jonah, but in the meantime I’m left to wonder if he’ll ever get better, happier, more self-regulated… more able to keep it together.

Funny how I wonder the same things about myself.

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