Saturday, September 26, 2015

Lessons from the Edge


Image result for on the edge of autism

I am working on a tedious Excel spreadsheet when my phone rings, the metallic sounds of “Kicking Back” making the phone bounce across my desk. I stifle a sigh as I pick it up and say a quiet, “Hello.”

“I am trying not to freak out,” says the male voice on the other end. “But I can’t find my car keys. Do you know where they are?”

Despite being 29 years old, my son believes that my power at finding lost objects is miraculous. While I have no idea where his car keys are, I gently ask him the standard response to such a question: “Where did you see them last?”

Image result for one car key“I had them last night,” he says, “before I went to bed. The key was in my wallet.”

Now is not the time to have a conversation about keys slipping out of wallets and better kept on a key ring, so I bite my tongue. I sometimes get ridges from biting my tongue. “Retrace your steps,” I say to him. “Did you go out in your car yesterday?” I ask the question even though I think he did not; Allen usually “takes Sundays off”, which means that he goes to church and loafs around the house the rest of the day. It is a self-imposed schedule; at the moment—while he finishes training with Occupational Vocational Rehabilitation--he has no job which defines a schedule.

He gives me the expected negative response. It appears his car is locked and he thinks he may have left the key in a sweatshirt lying on the front seat. Despite some work with a wire coat hanger, he can’t get into the car.

Again, I am tempted to sigh. Just two weeks ago, we had the lock on the front passenger door—which had not locked since Allen bought the van two years ago—repaired. Silly of us, I know. I suggest places for Allen to look for the missing key, and end with, “You can always call Triple A.” Allen is, of course, the reason I have purchased a premium membership with the car service. Just two weeks ago--yes, the same time I had the lock fixed--I was helping him push the same van off the Governor Printz Blvd while we waited for a tow truck to come.
Image result for red mercury van 
I can tell that Allen has been holding himself tightly together. I hear a big intake of breath. I wait. One does not rush Allen. “I called,” he said. “They said they only did it if a child was locked in a car.” Even as Allen speaks, I have closed out my spreadsheet and am on the AAA web site, checking into our account benefits. “No,” I tell him. “It says right here that lock-out services are covered up to $100. Did you call them today?”
No, he admits. It was a while ago. Come to think of it, maybe it wasn’t Triple A he had called. Maybe it was the police.

I really need to get back to work. “Okay,” I tell him. “So, we have a plan. Look all over for the key, then if you can’t find it by, say 1:00, call Triple A.” He repeats it to me, thanks me for my help, and rings off.

I am compiling eligibility lists for students to receive Title I services—really, just mindlessly plugging in numbers—so I let my attention wander a bit back to my conversation with my youngest child. He still lives with us as he tries to figure out a world that is often foreign to him. He comes from the edge of the autism spectrum, a place where sensory overloads and multiple directions and thwarted needs are a part of his everyday life. Back in his school days, he would be on a list such as the one I am working on; eligible for special services in reading and math.

Image result for autism meltdown memeI recall what he said at first: “I am trying not to freak out.” Back in June, shortly after psychological testing had indicated Allen was autistic, he had a severe meltdown when he could not find his driver’s license. We have come a long way since then. It is apparent to me that he has struggled to control his emotions and think through situations. While Allen’s home is on the upper edge of the autism spectrum, I live just to the side of it, attempting in any way possible to help him live a full life. I try, despite the language barrier, to “get” him. But, as always, I learn lessons from my last born child that I did not learn from his siblings.

Lesson #1: Spaghetti goes with mashed potatoes.
Image result for spaghettiWhen I was going to graduate school two evenings a week, Allen and his brother and sister needed to take turns making supper at night. One evening, I returned home to find that Allen had cooked up spaghetti with a side order of mashed potatoes. I asked him why he had concocted such a combination and his answer was: “I couldn’t find any soup.” I suppose it was as good a reason as any, but it became our family’s code for Allen’s challenges with learning.  Salad might have made more sense as a side to spaghetti, but you make do with what you have. Despite the alphabetic notations of LD, and ADHD, and OCD that followed Allen around on his permanent record, he did what he could to make sense of it all.

Lesson #2: Money has nothing to do with being rich.
While in 8th grade, Allen had to write an essay about our family. He asked me how to spell the word, ‘wealthy.” I laughed and told him that our family was far from wealthy. He aimed his blue eyes right at mine and said, “But we’re very rich, Mom! We just don’t have any money.”

Truer words were never spoken. What we lack in monetary resources, we more than make up in love and laughter. Our riches are not the kind that will rust and wear out. And while Allen hopes to one day make and sell a robot for “$20,000”, it’s not because he wants a lot of money. It’s because he wants me to work less than I do.

Lesson #3: Sometimes you need a doughnut.
A few years ago when Allen was working as a dishwasher at a restaurant in Media, he came home at 3AM with a Dunkin Donut bag and a single doughnut. He woke me up to show me. (I am used to being awakened at all hours; autism has no awareness of time.) “Nice,” I said. “Enjoy your doughnut.” I rolled over and intended to go back to sleep. “But it’s for you!’ said my son. “I was driving past Dunkin Donuts and I said to myself, ‘Allen, you have the world’s best mother. She deserves a doughnut.’ So I bought you one!” It was my favorite, vanilla cream-filled. And yes, he wanted me to eat it right away. And I did.

You should never refuse a doughnut when it is offered. Even at 3AM. Life is full of such surprises, and seldom keeps to a standard clock.

 By the time I get home from work, Allen has called Triple A and gotten into his car, but has not found the key. He is still holding himself together, still making phone calls, and has found a locksmith who can come down to the house and make a key for $75. Which I, of course, will pay. I make a few other suggestions of places he can look, but I am pretty much resigned to the $75 and impressed he has come this far with problem solving.  

I need to finish up the Excel spreadsheet in my office that evening, and as I type away, filling in the blocks with NP and NCE scores, Allen creeps into the room and sits on the couch. It is a habit the kids formed years ago; they just sit and wait. I turn in my swivel chair, my face a question mark.

And Allen, living on the edge of the spectrum and trying very hard to make sense of it all, hands me a doughnut bag, then grins and walks away.

I smile and open the bag. Vanilla cream-filled. He gets me.

Image result for on the edge of autism