By Sue LoringIn 1988, when my son was three, and we were anxiously seeking an answer to what was causing his language delay, his seeming lack of need for sleep and frightful temper tantrums, Hollywood produced an Oscar winning film, Rainman. If you’ve never seen it, I’d highly recommend you watch it. It’s available to stream on several platforms. It opened with a scene of cars being unloaded and the song Iko Iko played in the background. This film was not only Oscar worthy, it was groundbreaking, in that the title character Raymond Babbit had autism and the film centered on his brother coming to terms with what that meant.
For a young mother who’d just received a diagnosis of autism for her son, the thought of my son, being an adult with autism, was anathema to me. Like every other parent who sat and heard the words “Your Child Has Autism” I believed in my heart that we’d beat this thing, this autism.
Fast forward to 2018. It was 30 years ago last Thursday that we heard those words. We are living with autism and in someways have defeated autism. We’ve grown to accept the unique human being who is our son. Our love was always unconditional, our acceptance came harder. And somedays it is harder than others to maintain our zen.
Zen involves dropping illusion and seeing things without distortion created by your own thoughts. I’m not proud, but I’ll confess, last Saturday, my own thoughts about my son bordered on murderous.
Saturday dawned and I had a mental to do list as long as my arm, before I could head out for the afternoon and evening at the Mother’s Retreat. Ed always has his own agenda but generally can put off instant gratification until Saturday afternoon. That gives me Saturday morning to catch up on a week’s worth of household duties. Last week, my life had also been complicated by a mini crisis at home concerning my husbands health, following a month marked by surgery, infection , hospitalizations. It felt like a marathon of misery. To say I was a bit frazzled by the end of the month would be putting it lightly, never have I needed a Mom’s Retreat so badly.
Suffice to say I was less than thrilled to come into the kitchen to find Ed keening “The letter Big H the letter Big H, help, help, help.” an oft heard and dreaded sign that all is not well in his world. SO I ask “what’s the problem?” He had been looking under the fridge and he answers “earplugs”. He had his iPod buds in his ears, so I pointed out that he HAD his earbuds in his ears. His response was “orange ear plugs”. Ed wears foam earplugs pretty much all his waking hours for hyperacussis. He has hundreds of pairs. I figured this would be an easy problem to fix. I went upstairs & found 1 orange earplug on his bedside table. So I got another set of earplugs to give him but they were NOT the missing orange earplug. No sale .
“Ride to store to buy new orange earplugs” was his answer. So I said “sure at 11:30 we will go to the store and buy a new set of orange earplugs ok? ” Thinking I could buy some time to get something crossed off my to do list. I was heavily invested in mowing the lawn before it got really hot. He was agreeable answering, “YES!” Well we had a plan, or so I thought, but all the way downstairs he followed perseverating “Ride to store to buy new orange earplugs” My answer was “sure at 11:30”, followed by “Ride to store to buy new orange earplugs” “Yep at 11:30” followed again by “Ride to store to buy new orange earplugs” You get the picture. I know when I am licked so I say, “Get in the car.” All the way to Walgreens, ….”Ride to store to buy new orange earplugs” …. “Ride to store to buy new orange earplugs” …. “Ride to store to buy new orange earplugs” and I’m gritting my teeth. We arrive at Walgreens and go in. We find the section with earplugs. Pink, Blue, Yellow – no orange. After all these years you’d think I’d know better, but I suggest that BLUE would be fun, he’s never had blue earplugs and he agrees! I buy $10 worth of blue earplugs. And I think we’ve solved the problem. Then I decide to run quickly to Market Basket since we are out. Ed disappears immediately, turning right as I turned left so I did a U -turn with my cart and followed him, to ……..the health and beauty aisle. He scans the shelves picks up ear drops, ear wax treatment, and announces “No orange ear plugs” My heart sinks, knowing we have NOT solved the problem. And then I remember, he was looking under the fridge when this all started. I ask him, Ed is your earplug UNDER the fridge? He answers “YES.” OK I tell him,” lets go home and I can look under the fridge.” Drive home, go in the house and MOVE the fridge. Naturally, in a house where the only able bodied adult also works 40 hours a week there is a considerable amount of dust and accumulated lost items there, silverware, milk caps, small change, BUT NO ORANGE EARPLUG. It begins again ” “Ride to CVS to buy new orange earplugs” Knowing I am totally NOT going to get anything done until I have new orange earplugs I say through gritted teeth, “FINE – GET IN THE CAR” I’m thinking my head may explode, it’s already been an hour’s worth of time devoted to this quest, and the temperature is rising. I’m driving down the John Fitch Highway with the radio on and suddenly IKO IKO comes on the radio. All I can think of is Tom Cruise in the movie, Rainman, dealing with a similar episode surrounding ” 5 o’clock Judge Wapner ” and I begin to chuckle. The release of tension was palpable.
Yes, I was horrified as a young parent thinking I ‘d be dealing with “behaviors” as an old lady with an autistic adult son. Yes it takes but a few minutes into one of these episodes for old feelings of panic and despair to creep their way in to your psyche. But thirty years has taught me two things . 1. Those feelings are not productive to a solution, and 2. These episodes will pass, will be resolved if I can just keep my cool, so I take a deep breath and suggest that the hardware store may be a better choice in our quest for orange earplugs and he agrees.
We head to Rocky’s where the young girl with Aspergers, who works there and knows us, greets us with a smile and an offer of help and leads us directly to aisle 21 where the quest for orange earplugs ends with success.
This is autism. This is life on the spectrum and at anytime in Central Massachusetts, chances are there are others dealing with similar scenarios. Knowing that makes it easier, knowing we are not alone.
Knowing that afternoon I would be joining some of the survivors of this life at the Mother’s Retreat made it easier to take that deep breath and deal. Thanks for the support ladies, until next year, in times of stress remember we do have a village.