"Hom-gen-ized"

photo by Barbara Toboni

My expectations had been high for our first-born son. That’s why I felt overwhelmed when I left the office of our pediatrician with four-year-old Chase. Mild autism? What little I knew about autism, I had seen at the movies or read about in books. While my imagination flipped through frightening images of children rocking, screaming, and flapping their arms, David seemed to consider this a mere blip in his boy’s life. I should have understood. He had always been an optimist.

David came up with his own diagnosis: “That doctor is mildly autistic.”

We both had a lot to learn.

A few years later, after more testing, a psychologist told us that our eight-year-old would never learn to read phonetically.  

I tended to believe her, but David was skeptical. At breakfast the next morning as Chase ate his bowl of Cheerios, David asked our son to read the milk carton. Chase read the simple words first. This milk is from cows. He stopped. Homogenized was the next word.  

“Sound it out,” David said.

Hom-gen-ized.

Not bad! Maybe David had a point. The doctors didn’t know everything. Why was I so quick to believe them? It was true our boy had problems, but he strived to be like everyone else. He seemed to want to please his father.

When the boys were small, David worked long days as a cement mason. Although his company was based in Napa he often did repairs on existing buildings out of town. Commuting added extra hours he was away from the boys and me. That left mom on duty just about all the time.

Adding to that, I felt isolated. My relatives lived out of state and David’s family lived out of town. Sure, I could pick up the phone and call David’s mom or sister, but I didn’t want to call just to complain. Friends couldn’t relate to my troubles. I shied away from them preferring to be alone rather than having to explain Chase’s odd behaviors.

When David wanted time to pursue his interests—fishing, diving, or wine-making—I reacted by flying into a rage. How dare he want time away from us?  I would never put him in that position. The boys, both under the age of five, needed me. I knew their schedules and I didn’t want to give David my control—no matter how out of control we were. Back then I didn’t understand who I was if I wasn’t their mother. I needed them to make me feel whole.

I wished David could understand my outbursts, my grief. How could he be so casual about Chase’s autism? How could we be so different? It caused friction in our marriage. David didn’t fight me when I suggested marriage counseling.

Our counselor praised us for staying together. She told us many marriages fall apart when there is a disabled child, because each parent adjusts in a different way. You can say that again! I learned most of our trouble stemmed from the fact that we didn’t know each other well enough. It was true; we had dated only six months before David proposed, and Chase was born a year after we were married.

During one visit David and the counselor were talking about his interest in wine. The more he described his new hobby, the more animated he became. I grew anxious watching them. Why couldn’t I get that excited about something new in my life?  I needed to find an interest of my own, something to remind me of who I had once been. I used to do things I enjoyed.

Back then, I had spent too much time feeling sad about Chase. We hid from others rather than go somewhere, like the park, because I didn’t want to associate with “perfect” mothers and their “perfect” children.  I didn’t want to be stared at, or judged, or even worse, be shunned, but I needed to get out of the house. I needed to feel air and see light. I tried to remember the things that brought me joy.

In school I had been a shy girl with few friends. I liked English classes, especially when there had been writing involved, and I had kept a journal for poetry. Writing, I could do alone. Writing engaged my mind, and held my interest for hours while I searched for the right words to express my thoughts.

Every semester the local college sent out a catalogue which offered adult education courses. I usually thumbed through the catalogue and put it aside, but one day I lingered over a writing course. What if I started writing again? I could escape for a little while, get out of the house, get out of my head, and allow myself a sliver of joy.

It occurred to me then that David and I could each bargain for time alone.

Focus Pocus

Wish I could wave a magic wand and make my next post appear, but that's not going to happen. Just like everything in life nothing gets done until you sit down and do it. At the beginning of 2016, members of my critique group decided to share their writing goals. My goal was to post a memoir piece once a month on the subject of autism in our family and to bring it to the group for their review. It seemed like an attainable goal. I figured by the end of the year there would be 12 perfectly polished pieces I could combine into a book. Exciting, eh?

Focus pocus! Another deadline bumped me off my mark. Submissions were due for the 2016 Redwood Writers Club anthology. While considering the opportunity to see my words in print, I felt pangs of guilt because I would lose focus on my New Year's goal. How could I justify the delay?

Are you thinking what's the big deal? It's only a few weeks, a month? No. How about forever? I have seen my writing evaporate the second I stop thinking about it. Try to remember a dream after you wake up. The more time that elapses the harder it is.

On the other hand, I knew what a great opportunity this would be. I could work with an editor for free! Editors aren't cheap. It's also a nice feeling to be able to contribute to the club. The anthologies raise funds.

I'm happy to report my piece was accepted. Wonderful. I was not happy to see how much editing the story needed to produce it for a page. But, with great relief, I finished my second draft. I'm hoping there won't be much of a third. We'll see. Maybe I can rescue that fragment of my 2016 dream after all.

In other news, I also belong to our Napa Valley Writers Club and they just celebrated their four-year anniversary. Guess what? They are in the process of planning a maiden edition of their anthology. Should I submit? Of course. Focus Pocus!

Fearless

Chase, age 16

Chase loves the snow. He learned to snowboard as a teenager on a trip to Lake Tahoe with his brother, Jim, and cousins, Kyle, and Kevin. Dave’s sister, Vickie, and her family rented a cabin with us in the snowy village of Homewood. Vickie and I rented skis and snowboards and signed up for lessons with our sons at the mountain resort nearby. David didn’t need instruction, and Kirk chose not to ski, but he drove us to and from the resort in his minivan. That was scary enough! Especially, the one night when we ran into black ice on the way back to our cabin. 

I should admit my skills at the end of my lesson were not much better than when I began. A few sweeps down the bunny slopes and I discovered I had another skill, falling without breaking bones! Vickie fared much better. She had some prior experience, but our skills are not what this post is about. The point of this post is that we found out Chase was fearless with a snowboard, more so than his cousins. Very more so! And this was worrisome to us because we knew Chase, an autistic fellow, wasn’t always alert to his surroundings. David and I had tried, for the most part, to keep him out of danger, but we wanted him to have fun too.  

After Chase’s lesson we checked in with his instructor and he told us that Chase had done well. He had demonstrated two basic skills necessary for boarding, steering, and slowing down to a stop. Our boy was ready to fly, but I wondered how fast he could use those skills when speeding down a mountain. Being the oldest of his three cousins, he wanted to lead the pack. I recall one long discussion about staying off slopes designed for the pros with black diamond markers, but Chase seemed to think he was an expert. Unfortunately, he didn’t have the knowledge of an expert.

I will admit all of the boys possessed an amazing agility for snowboarding, but the grown-ups decided that to be safe they should stick together, and, if necessary, Kyle and Jim should act as bodyguards to rein Chase in. “Stay away from black diamonds,” we called to them as they marched off to the trails. That left Dave, Kirk, Vickie, and me with some freedom to relax in the lodge, and stay warm while we prayed.

As we sipped hot drinks on the sidelines, six-year-old Kevin, a quick study from his own beginners class, kept us entertained with his new moves. Outside the giant windows our boys blended in with the crowd, a blur of bright parkas and knit caps. Their antics reminded me of a pack of penguins dressed in fancy costumes instead of their usual tuxedos.  

I recall it was a week of bliss surrounded by stunning views of snow covered mountains studded with glistening pines, glowing fires, and lopsided snowmen. And sledding, my new thrill. Easier than skiing!  I'll never forget the boys’ ruddy faces when they came in from the cold, their eyes shining with excitement as they described their adventures. They told tales of Chase as though he was their hero, the way he flew the fastest and arrived at the bottom of the mountain first.

Although the controls we, as parents, placed on Chase were crucial for him to live in society, snowboarding allowed him some freedom to be himself, to be in control of his own body on the board. There were many tumbles for Chase on that trip, but after each one he emerged smiling and fearless, ready to fly again.

It’s an entire family, uncles, aunts, and cousins that help raise an autistic child.  

Uncle Kirk and Chase shoveling snow.

Halloween Friends

Greg, Chase, Jim, and Sean on Halloween

One year my sons dressed up as their favorite video game characters, Mario and Luigi, for Halloween. Chase, my oldest son is autistic and had become obsessed with the game developed in 1985. Two heroes, Mario and his younger brother Luigi, try to defeat creatures popping out of the sewers below New York City. What’s not to love?

My husband, Dave, known for his infinite patience, had spent hours teaching Chase to play the game, and Chase, like his younger brother Jim, conquered one level after another to win points. But this post is about the boys and their good friends in the picture. Chase, age nine, and Jim, five, wore white painter’s caps with the letters, M for Mario and L for Luigi, marked on the front. Knight, Greg Felten, and Dinosaur, Sean Felten, set out that night to hunt for treats.  

Dave and I had joined a support group for children with disabilities, and once a week we met in the evening at a nearby school. There were 5 families that attended the sessions on a regular basis. Steve and Mary Ellen Felten became our close friends. Their son, Sean, had Down’s syndrome. While parents met in one room, the children played in a classroom nearby with supervision. A volunteer facilitator led our group and it didn’t take long for us all to open up about our stressful lives.

In one instance I told the group that I felt burdened, having to explain Chase’s odd behaviors. I didn’t know what to tell people. Should I explain how my son was affected by autism? Should I apologize when his disruptive behavior was out of control? One solution that stuck with me and, if needed, I still use today, Just say simply, Chase has problems. That’s what we do. You don’t need to apologize for your child or explain anything. It was a simple solution, one I needed to hear from a parent who had been there. Over the course of about a year we attended meetings and learned a lot from each other. 

So I’m thinking this Halloween I will give Mary Ellen a call. Although her family moved down to Paso Robles, we remain friends. I feel like our families bonded like pieces in a puzzle. All of us had much in common. Steve, a winemaker, enjoyed working with Dave on his homemade wine. Mary Ellen, who went back to college to finish her degree late in life, inspired me to do the same. We shared many Halloweens and family birthday parties, football Sundays and summer barbecues. We often talk on the phone and still share the challenges and successes in our childrens’ lives. Raising a child with a disability was not something I could do alone.

Seeing Elephants

photo by Kesara Rathnayake

I don’t usually remember my dreams, but a recent dream was so absurd that I woke up and recorded it in my journal:

I saw a man and his wife in my neighborhood out walking with their baby in a stroller. A baby elephant walked alongside them. Very odd. I asked him why there was an elephant with him, and we had a discussion about why I thought it was a bad idea. Can’t remember the exact conversation, but I thought it might make a good writing prompt.

Me: I see you are walking with an elephant.

Man: Yes.

Where did it come from?

I really don’t know. It showed up on my doorstep.  

 I see. Well, we have something in common. I am having a dream of this exact elephant. Are you going to keep him?

It is not a question of keeping him. I will take care of him as long as he continues to follow us. He seems to have chosen us.

Wouldn’t it be wise if you called an authority like a zookeeper? Maybe you could see if a zoo nearby is missing an elephant. I mean are you willing to bear the expense of caring for such a large animal?

It is my duty to bear the expense.

If it was me, I’d call the zoo. Do you know anything about the needs of an elephant? You should call an authority.

Elephants are wise. He has chosen me for a reason. You are very worried about a problem that does not concern you. You must leave this dream at once.

Hey, buddy, this dream chose me just as the elephant chose you. As a dream symbol this elephant may represent something important. I’m staying in this dream until it makes sense to me. Step aside and let me talk to the elephant. I’ll see if he knows why we are here.

The man stands back, and the baby elephant speaks! (That’s right. The elephant talks now. Writing prompts are even sillier than dreams.)

Me: Excuse me, Elephant Baby, Do you represent an obstacle in my life that I need to address?

Elephant: Yes. Anything is possible.

Okay. Why do you say that?

Anything is possible.

 Again. Please explain.

You are having a dream in which anything is possible. And you are having a hard time believing that anything is possible. You tell me why I’m here.

You are not real. I will wake up. You’ll be gone.

Anything is possible.

You mean if I allow myself to dream, anything is possible?

Bingo!


For comment, do you ever dream about elephants?