Do you freeze, cry, scream, stomp your feet, get mad and say angry things at whoever (known or unknown) happens to be in your immediate vicinity, call/text your spouse, pronounce the entire day is ruined? Are you beside yourself, and then some, alternating between a mind in overdrive mode (how do I get us out of this mess now?) and lapsing into perhaps this is actually a nightmare and it will all melt away, so you just stand there dithering and things get a little worse?
Once upon a time, and certainly within the lifetime of this blog, I'm sure, I know, I have displayed all of the above and not always within the privacy of my own house, car or former office. Granted, Jim and I have found ourselves in some sticky situations with Charlie in neurological storm mode.
The time on top of a manhole cover on the platfrom at Newark train station.
Beside a certain on-ramp of the Garden State Parkway.
At the outdoor swimming pool where, in splashy rather than stormy flying-French-fry moments, Charlie and I passed so many summer afternoon hours.
Somewhere off Broadway in lower Manhattan and a street a couple of blocks away from Jersey City Medical Center.
Etc. and I could go on and on. Charlie doesn't mean to cause trouble, or do things that result in broken glass and wall plaster and visits to the ER. His disabilities are profound and lifelong. He needs 24-hour care now and he will need 24-hour care for all of his life. I was last taller than him 7 or 8 years ago. With absolutely no teaching, training or coaching, Charlie has the swagger of a high school athlete whose muscled body, even flopping loosely on the couch, can spring into activity at any moment, word or flap of a butterfly's wing (and especially the last -- being minimally verbal, Charlie's other senses are keenly attuned to everything going on around him).
When Charlie was diagnosed with autism just as he was turning 2, it gradually became clear to me I'd better change. However 'common' a diagnosis has become, raising a child with his needs remains a not-the-norm experience and as Charlie has grown and changed, Jim and I have had to change ourselves -- our plans, jobs, goals, attitudes, domiciles, expectations -- willingly or not.
Charlie is on his way to being 18 and a legal adult. This long period of his adolescence (it started when he was 11, if not earlier) is coming to its final stage. Tumult and trouble are as ever liable to occur. Looking back over the past 17 and a half plus years, Jim and I have been reflecting that many of the panic attacks and such that Charlie has had in recent months are not that different from instances of manic, potentially and actually injurious, full-out physical behaviors of Charlie the toddler in a St. Paul Office Max, Charlie the nursing infant, Charlie the 9-year-old on his bike on a cold fall day, Charlie the 14-year-old running full speed toward a pickup truck after jumping off his bike in New Jersey horse country. The major difference is a fact of life: Charlie is younger and stronger than us.
There is also another. After repeated instances of the sort noted at the start of this piece and gnashing of teeth (not Charlie's), after years and lots of self-and-spousal-scrutiny (Jim and I being, not only at times beleaguered autism parents but also professors whose default mode is think about it, analyze, discern, discuss, delve into ourselves and see where the knots are), we learned.
Hence I have been able to outline for Jim my handy-dandy guide to How to Handle Mishaps aka The Unexpected aka Ripe Cause for Chaos when in the company of Charlie:
1. Do not talk.
2. Do not call attention to whatever disastrous thing has just occurred.
3. Do not communicate the worry, fear, annoyance, etc. you feel, either verbally or non-verbally.
4. Do devote your energies to figuring out how to solve the problem in front of you as quickly and mellifluously as possible, at least to get you and yours to a safer state of things.
5. Maintain a cheerful, pro-active tone.
(Reviewing this list, it occurs to me that, with the obvious exception of #1, it in part describes me in the classroom.)
The list came to mind after a successful Saturday biking outing with a friend that might have turned out far differently.
We have a new bike rack on the silver car. At the moment of loading on Jim's and Charlie's bikes, we couldn't find all six rubber loops for strapping the bikes on. Jim and I (who had a suspicion the missing loops were in the trunk that we didn't want to open and search through because Charlie was in go-mode, buckled into his seat) started to not abide by #1 of the list above. Then we stopped ourselves and put each bike on the rack with only two loops. By the time we got to the suburban parking lot where we had arranged to meet our friend, the outer bike was hanging by only one loop.
Jim realized he did not have his trusty wrenches to adjust the brakes on Charlie's bike.
We all got out of the car and took down the bikes. I spied the missing loops amid the trunk detritus, waved them at Jim and Charlie, and affixed them to the rack. Jim checked the brakes on Charlie's bike and found them still to be loose and I asked if he could maybe use the screwdriver that's been under the passenger seat of the car for a few weeks?
The screwdriver was the perfect size to adjust Charlie's brakes.
We all started riding and it was delightful. We were riding not far from the town I lived in when I was 4 through 8 years old, on a path lined with the same sorts of walnut and oak trees that surrounded my elementary school. My friends and I liked to stamp on semi-smashed walnuts on the playground. We'd watch the treetops swaying down and up in the wind that picked up as the day wore on. And I still can feel my shock, or rather horror, when I was in the first or second grade, and, on looking into a stall in the girls' restroom, saw a toilet overflowing with green walnut leaves.
I ran out at the sight of something in totally the wrong place. I could be wrong, but I think I never entered the restroom at the school (which I attended up through the fourth grade) again. I was raised in an extremely well-ordered household and disorder terrified, if not sickened, me.
This could be why, new to motherhood as I was to Charlie care (and still in the early phases of my teaching career), I did any and all of what I noted in the first paragraph in the face of various challenging situations.
17 and a half years is a long time to do, think and be and to get a better grip on things and myself, especially in the face of mishaps. We have prevailed so many times on Charlie to be peaceful-easy: Surely we ought and can be ourselves models and, just as we ask him to adapt to the inevitable dust the world kicks up, do the same.
It is not that I am become some sort of super-poised cool cucumber. On Saturday, Charlie and Jim biked ahead and I was chatting with our friend about how many students I think I might be teaching next semester as we went over a bridge. Then I saw that my front tire was flat.
Charlie has seemed to like me joining him and Jim on bike rides. He turns back his head quite frequently to check in on me (and, too, to make sure I'm not going to crash into him again). Our friend stopped to look at my bike and troubleshoot and I, after texting Jim 'flat,' kept wondering how Charlie was handling no-Mom and if our friend shouldn't go ahead. Our friend took my helmet to make it a bit easier for me to drag my bike on its back wheel, talked to Jim about where he and Charlie could meet us on a main road, and mentioned a nearby bike shop. I uttered maternal worry again.
'Charlie,' our friend said, measuring out his words, 'is on a mission.'
He went ahead and I pulled my bike on the path, with many a pedestrian whom I had sailed by passing me. Just as I turned right towards the main road, a familiar silver car appeared.
Charlie obligingly leaned to the right so Jim could put my folded-up bike in the back. Our friend opened the back door to give Charlie a hug and then Charlie shut the door in his usual way (very loudly, and solidly). Jim assured me that the bikes were tightly fastened to the rack and, recalling how the one bike had hung on by only one rubber loop earlier, offered an excellent witticism: 'This family hangs on!'
Perhaps, in part, in spite of -- or rather, because -- we know mishaps happen, we do not run away from disorderliness. We work through it and work it through and, with bicycle grease smudges still on our hands, get on with it.