The stone wall, the spot of red paint, and a lot of bugs: From one hot season in Minnesota to the start of a New Jersey summer(#5)

Tonight as Charlie and I roamed our neighborhood streets, encountering playgrounds and bugs, I kept thinking of Minnesota. We moved there just after Charlie’s first birthday then moved back down the Mississippi River to St. Louis, Missouri, two years later. (For the record: Charlie was born in St. Louis; Jim is a native Jerseyite; I’m a transplant to the Garden State, via California.)
Charlie displays some Jersey attitude
Six years ago, Charlie was diagnosed with autism in Minnesota.
It was our second summer in the Twin Cities and a hot one: temperatures in the high 80’s if not 90’s for days. We were living in a second-floor duplex with one air-conditioning unit in one bedroom. We moved piles of Charlie’s (unplayed with) toys, Jim’s papers and computer, our books into that one room, or drove endlessly in the (then-new) “green car,” a Subaru station wagon, in air-cooled relief. The carpet of our apartment was warm to the touch when I awoke; all of our books curled in the wet, thick air; Charlie, barely two, non-verbal, head-hitting, interested in one thing–a Vtech laptop toy–went shirtless, or in his diaper. (We had started Charlie on the gluten-free casein-free diet and we did see one big change: His rashy, firey cheeks became slowly smoother and clear.)
As I said, I’m from California–Oakland/Berkeley to be specific–but I’ve been to Sacramento and the Great Central Valley where summer temperatures in the 90s are the norm and my uncle joked you COULD and DID fry an egg on the sidewalk; I’ve been in LA at the height of summer; I went to Taipei, Taiwan, for three sticky months years ago; I visited a good friend in Mobile, Alabama, in late July and have never been in such warm (80s and up) water as the Gulf of Mexico’s. But the summer of 1999 in St. Paul was the hottest our little family of three has endured, and we had moved to Minnesota from St. Louis where my contact lenses used to steam up in my eyes in June and the weatherman gave the forecast as “hazy hot & humid” with a “what’d you expect” grin. In St. Louis we had (and you can call me a weakling) central air, and still I could see the pages of my Classical Greek dictionary curling. Perhaps because the word “cold” is usually associated with Minnesota weather, not “hot as hot can be,” air-conditioning was not as prevalent as further south in Missouri.
In pre-Charlie days, I would have stayed in libraries, bookstores, caf├ęs, and (as a friend told me she resorted to) supermarkets all day; that was my strategy while in graduate school in Connecticut (when I lived above an Irish bar and…..I digress!). In the summer of 1999, Charlie hit his head on the linoleum at Office Max and got his first blackish bruise and kept up a certain whiney “buuuurrrr” in bookstores, so these were out of the question except for short periods. We could go to the Mall of America but in the midst of this was Camp Snoopy, a full-functioning amusement park, and in those days Charlie hollered endlessly if he could not ride and ride and ride the merry-go-round. It was home sweltering hot, or the Subaru—we went to Anoka, we went to Stillwater, we went to Hudson, Wisconsin; we’d been to Duluth; we went to White Bear Lake and–we were outsiders, non-natives, and we had one struggling boy.
“I miss the Jersey shore,” said Jim.
At the end of each day–and, since we were so far north, daylight lasted and lasted–we would go on walks. These presented challenges that, at the time, were excruciating because of what we did not know about autism, and that, with six years’ echoes of howls and yips and giggly silliness in our minds, have become more commonplace.
Charlie had two passions in our neighborhood: (1) a stone wall and (2) a red drop of paint.
Imagine the Minnesota summer with the sweet smell of green gardens, a street of woodframe houses straight out of Garrison Keillor (he indeed has a house in St. Paul). We are going on a walk. Jim holds Charlie’s hand (our boy wobbles; walking is new) and can he scream.
Though the official document from the Minnesota Children’s Hospital Child Development Center has yet to come, we know that Charlie has autism and that a need for sameness in all aspects of his life is part of this strange new disorder–disability–that, we know we will soon be informed, will be part of our lives until the end and beyond because individuals with autism live to their full span of life.
“He only wants to go right,” says Jim. He grabs one hand and I the other; Charlie screams, Charlie curls his legs and head back into an arch and we lift-drag him left. (Passers-by do not stare; their faces are iced over in the effort to ignore us.) I don’t remember when Charlie put his feet down (he did) as we simultaneously, silently mused about how strong his arm sockets must be.
Somedays we would walk right from the walkway from our house, and and sometimes left, and Charlie screamed, screamed less, shrieked. Stopped. He did not say “no” because (at that point–he was just over two years) he could not. Sometimes we walked to a playground on Selby Avenue. Everything was made of wood or metal, like a huge steep slide that fell at a near-vertical angle. But Charlie’s favorite part of the playground was a red dab of paint. It was the result of a careless paint job to the metal posts. The red spot was a dot to the rest of the playground but, there on the second wood plank step, it was all that Charlie would look at. And look at obsessively, hanging onto the post and staring and not letting go of the post and backarching crazily when we coaxed him to go up the next step. We pulled, yanked, dragged, carried Charlie away from that spot and made him play, or go through what motions of it we could manage till we all slogged home, crying child, us quiet.
Every day that summer, Charlie wanted to walk right to go and see that spot of red paint. It was the one thing he knew did not change and that he could count on. And Jim and I plotted about what color of paint we could purchase to paint over the mark.
We never bought it.
Instead, we learned to take Charlie’s hand and pull-drag him up the stairs and onto the platform and down the slide, to walk past the red spot of paint and know that everything would be all right.

Now it’s the start of summer 2005 and Charlie has lived in New Jersey longer than he has in the Midwest. He has just a bit of a swagger to his step and, yes, a kind of pushiness that is the stereotypical attitude in these parts. How we got Charlie here is an odyssey meriting a separate blog entry. But suffice it to say, I still wonder if that red spot of paint is there on the Selby Avenue play structure, and I suspect Charlie could find it if we were in our old neighborhood in St. Paul, and I know that he could walk away. And the bugs still bite me here–yeah right, this is the GARDEN State–but the sting doesn’t bother me. I mean, what do you expect?

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