Forty-five Hours

Grandma Ruth's blanket waiting for baby Chase.

Dave described the waiting room in the maternity ward at UCSF as “crowded.” Outside a short partition with a shrub on one side and an open corridor on the other had offered him some privacy as he leaned against a connecting wall and fell asleep.

He tells me now my foul mood chased him out of the delivery room. I’m sure I complained plenty about my uncomfortable position and my lack of laborious progress due to the steroid medicine coursing through my veins. I remember distinctly he uttered these words. “It can’t be that bad.”

I forgive myself now for whatever unpleasant outburst I snapped back at him in reply. Nurses—I’m certain they overheard me—tsk-tsked my behavior but kept their forced smiles as they went about their business of keeping me in check. I didn’t care. This was about mid-point in my forty-five-hour birthing process. I felt sorry for myself and I was tired.

Tired of hearing, “Your cervix is not dilated enough yet Mrs. Toboni.”

I had been a handful. “Could you find my husband? Can you help me roll over? How much longer? I need the bathroom again.” I looked forward to this last activity, hoping my child would drop into the toilet. Of course then I’d rescue him. Or would I? All kidding aside, I was scared. I kept trying to comfort myself with the reassuring words from my doctor, back in Napa—the one who couldn’t be here because he was on vacation. Women have been delivering babies since the beginning of time. You have nothing to worry about.

I had plenty to worry about. Did those women have preemies? How small is too small before there are problems? What if I smother my baby while I’m rolling around?

“Please try to stay calm, Mrs. Toboni.” I heard over and over again. At this point I am feeling achy, and there are twinges, but little else.

“Don’t push,” the doctor ordered. I wanted to push. I was anxious to practice my new breathing technique that I had learned in my first prenatal class. There had been no time for a second class. You’re too early baby!

The sonogram had confirmed our baby was a boy. Dave and I had agreed on the name, Chase. As I counted the minutes and hours, I watched the baby monitor. Chase Martin Toboni, I silently told him, I love you. You’re going to be perfect.

Beautiful Baby

Chase's plaque

Every mother likes to say her baby is beautiful, but I had proof. Johnson & Johnson awarded Chase an Honorable Mention in their Beautiful Baby Contest. I had hoped for first place and a college scholarship, but was glad to accept the plaque. His first couple years, I was only aware that my child was a beautiful baby destined to have a bright future. I couldn’t see that he was autistic, not yet anyway.

Before Chase was born I went to sleep as usual but woke up a few hours later in labor. How could this be happening? Our baby wasn’t due yet. I had just quit my job at the local newspaper, and I thought the timing would be perfect. I’d have six weeks to prepare, but Chase had his own timeline. 

David drove me to our local hospital and after checking in a nurse placed her stethoscope on my belly. Surprised, she looked at me and said, “You’re having twins.” She had found two pulses. She ordered a sonogram. Pre-term twins? What did that even mean?

Dave was half asleep in the hallway. “Guess what?” I called as I rolled by in my wheelchair. “We’re having twins. Come with us to the sonogram.”

It took a minute for the shock to stop constricting his vocal chords. “Twins?”

            “Yes, twins. You look pale.” He looked as bad as I felt.

After the sonogram the doctor—not my doctor, he was unaware of Chase’s timing and was off on vacation somewhere—confirmed what the nurse had told us. “Yes, there are two pulses, but only one is a heartbeat. The other is an ankle beat.” He assured me my baby was a good size for a preemie, about four pounds. “His best chance for a normal birth is at UCSF Medical center. We’ll send you there by ambulance.”

Ambulance? I’d never been inside one, but this wasn’t some great adventure. This was an emergency—sirens, paramedics, and the frightened mess that was me. And this new term for babies, preemies? How could there be this whole other species of babies that I’d never heard of before? 

“But I’m in labor now. Isn’t the baby going to come out now?”

The doctor explained that the labor could be slowed by injecting me with a steroid type drug allowing the baby’s lungs to develop. Even one more day of keeping the baby in my womb could make a difference.

My anxiety grew on the way to the hospital. This was partly because Dave couldn’t ride with me in the ambulance—he followed in our car—and because the intravenous drugs were working. I felt jittery. The paramedics were doing their best to keep me calm, but it was impossible to relax for the hour long ride from Napa to San Francisco.

At the hospital nurses and doctors buzzed around me as they settled me into my room. I was instructed to stay in one position, on my side, because the baby would have trouble breathing if I rolled on to my back. After a few hours my body was aching, but I dared not roll over. My water had already broken so there was nothing to stop Chase from being born but my uncomfortable position and the meds. Dave did what he could—massaging my back—but he was exhausted and after a bit he had to find a place to rest. He told me later he had found a bench outside and had fallen asleep for a few hours.

Thankfully, doctors knocked me out so I was able to get a few hours sleep before the birth. In all I labored 45 hours— 3 a.m. July 3rd to noon July 5th. Chase’s grandmother nicknamed him our Firecracker Baby. I learned very quickly that this wasn’t at all about me anymore. I prayed everything would be all right.

Chase: Part 2: First Words

Chase age 4

Along with the contact information for North Bay Regional Center, the doctor advised David and me to call the Napa Infant Program—NIP—a pre-school for toddlers with special needs. We’re talking just beyond potty training. (Some bragging here, Chase aced the potty by age 2.6.)

The next day I called NIP and they set up a home interview. On a rainy November afternoon, Johanna, a Special Education teacher, arrived at our house on time. I recall her name because she had been so kind. David’s mother, Colleen, had driven over from Petaluma at my request. I didn’t want to be alone. I brewed three cups of hot tea, because my hands were freezing.

“Hello, my name is Johanna,” she said to Chase. He mostly ignored her preferring instead to play with the puzzle his grandmother had offered him. Johanna watched him and took notes. Then she turned to me. “How do you know when Chase is hungry? Or when he wants to play with a toy out of his reach?”

I tried to be honest. “He fusses and fusses until I give in. I just give him what I think he wants.” What did I know about modeling the behavior I wanted from him? Nothing.

She offered Chase a candy—a mini Tootsie Roll—a signal to me that our interview was over. Johanna explained the NIP program to Colleen and me. “I believe Chase would benefit."

The process had begun. That had been the start of Chase’s first Individual Education Plan—IEP—others would follow annually. Four days a week from 12:30 to 3:30 he would attend NIP. Beginning after the holiday break, a little yellow school bus would deliver our toddler from our door to the school and back again.

On the first day of NIP I had been prepared to go with Chase on the bus, but he didn’t seem to need me. He marched right up the steps, took a seat, and didn’t even wave goodbye. Perhaps the bus driver felt guilty when she saw tears well up in my eyes. She waved goodbye to me.

Chase adapted well to pre-school. Parents were invited to visit, but it was noted that some of the kids—our son included—acted up when we did. I settled for sending notes back and forth in a journal that he carried with him in a back pack.

Progress was made. One day the teacher sent home instructions for the use of sign language. “Chase said book today by opening his hands. Try these words at home!” Potty was a word he could say by shaking his little fist. I guess for him that one was a no-brainer. As for talking, it took years for him to learn to communicate.

 His first true words came by age six. One night I couldn’t sleep so I went into the kitchen and poured some milk. Chase must have heard me. Did he want milk too? Leaning against the couch, he watched me while he rocked back and forth.

“Chase, how can I know what you want if you don’t tell me? Do you want milk? Do you understand what I’m saying to you?”

He continued to rock. What kind of an answer was that? “This is hard, Chase. I just want my son to tell me what he wants.” Tears threatened, and I tried to control them. “It makes me very sad that you won’t talk to me. Couldn’t you at least try?”

I was determined to get through to him. “Do the children at your school ever talk?”

No answer.

“What about Ivan?” Although I knew Ivan had Downs syndrome, I remembered hearing him speak. “I bet Ivan could tell me that he wants milk. And I would give him some right away. Can Ivan can say he wants milk?”

            “Ivan mik,” he said. Just like that, my son spoke. Not exactly what I wanted, but he spoke. My hands shook as I poured him a cup of milk. We opened the cookie jar to celebrate.

After that night more words slipped out—incoherent at times—but words, something so simple for most six-year-old children were remarkable for him.

Chase: Part 1: No Words

photo by Kiljander

Einstein didn’t talk until he was four.

He’ll talk when he has something to say.

Can he hear?

All were remarks from our relatives and friends intending to be supportive, but I mostly ignored them. My child was not Einstein, and it seemed to me that if he could whine and cry he could toss out a word or two.

By age two, at Chase’s physical exam, the doctor asked how his vocabulary was developing. I listed what I knew: da for Dad, dō for dog, ba for bottle, but they were sounds not words. I explained he had never babbled like other babies. Sometimes he gestured for things, a cup, a cookie, but mostly he yelled. 

“He should be putting two words together by now,” the doctor had said. “Make a list of his words and see me again in two months.”

Chase had been born six weeks premature so I expected delays in his development, but when he sat up at eight months, and walked at thirteen months, I stopped worrying. Did he need more time? Was I doing the mom thing right? Did this happen in other families? Chase was my oldest child. I hadn’t been around enough children to know for sure that something was wrong.

One day, feeling desperate, I decided to not let him out of his high chair until he said “down.” Any similar sound would do: dow, deh, doo. Nothing.

“Just sit there then,” I told him, and ignored the consequences. His vocal chords were fine.

“Say ‘down’,” I said.

He stretched out his arms.

“DOWN,” I demanded.

He kicked and his highchair wobbled.

“DOWN,” I yelled. (Not a good strategy, but I was feeling it.)

Afraid that his rocking might land him on the floor, I finally helped him. “Want a cookie?” Perfect. Now I was rewarding him for not talking. He snatched it out of my hand and ran from the room.

Two months later in the doctor’s office, I didn’t need a list. There were no words. Instead, there had been noises, silly noises, elongated vowel sounds, or tuneless humming, endless noise. “Quiet!” I yelled. We were the perfect pair, unable to communicate; there weren’t enough cookies in the world to fix us.

The doctor handed me a slip of paper with the phone number of North Bay Regional Center. He explained it was a state agency that offered free psychiatric testing for families in need of services. He also ordered a hearing test.

The results came back normal. 

To be continued…

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?

Hidden Muse

 



 

Wall art by Chase Toboni

If you’re in need of inspiration clean out a closet. Recently we installed carpeting in our house and that meant clearing the floor in our closets. Years ago, one wall we never had the heart to paint over was in my son’s room. Chase, at age four, had a passion for scribbling, and we decided to give him the inside of a closet wall for his doodles. While he doodled he seemed to be at peace.      

Chase has a mild form of autism and repetitious activities are the norm. Coloring seemed something he could do. Rainbows, in particular, appealed to him. He drew them religiously, and who could not be pleased when viewing a child’s rendition of a rainbow? Birthdays, holidays, and gifts for no other seeming reason than to announce to the world that he was among us. What a simple thing to give someone, an upside-down smile of happiness.

Years later, in high school, a teacher suggested he join a ceramics class. Chase seemed to have an interest in art, and his teacher had caught on. Art calmed him down. It was one way he could be included in a normal classroom. He seemed to enjoy clay and he produced these ornamental objects. They may look a bit ungainly but they are expressions of the soul, just like any creation.

I proudly displayed these objects for a time, but later wrapped them in newspaper and stashed them away in a paper bag marked Chase’s sculptures. These few forays into the art world also produced a brown mask-like sculpture of me, which I put outside in a planter box, but it later broke. According to my son, it was me in the morning, my hair all scraggly coming out the sides of my face like short ribbons of mud. He called the piece, “Mom’s Hair.” Good subject, bad look for me. That’s how it ended up outside. Wish I had stashed it in the closet too for safe-keeping.   

Chase in 10th grade with his ceramic pieces.

Toast to our Future

Now that it's in black and white it feels real. Today's Napa Valley Register headline reads, Computer Business Owners to Retire. Below is our letter to the editor.
 

Cheers!

Dear Editor:

In 1995 David Toboni started our business, Able Computers. His motivation was a new computer we had just purchased. In no time David had created an “irreversible error terminate” message on the new pc's screen. 

Our neighbor then, Dr. John Hazlet, said, “All you have to do is sys the boot drive.”

Booting to a floppy drive and sys the c drive did work. Success! After that David was hooked knowing he could experiment, and if he failed he could get the computer running again.

More and more curious, David expanded his knowledge in building computers, networking systems, and helping friends. He took training in 1993 with Clarity Technologies, for two years. He also took classes at Diversified Office Training in Rutherford and worked at Computers Online in Santa Rosa.

            Now, after 20 years in business we are announcing our retirement. Prior to David’s years in the computer business, he had worked in construction along with a handful of other jobs, forty-five years in all.

It’s time to slow down. David and I want to thank everyone that has come to him for help for the past twenty years. We’ve met so many folks that will remain friends. David has always said, “I can’t think of a better place to work and raise a family.” I agree. I have worked alongside David managing our office and keeping the books. We have two grown sons that are also employed in Napa.

It’s a little sad to say goodbye, but we feel the community will be in good hands. Computer Engineering Group has purchased Able Computers. Jorge Zetina, the owner, has just celebrated his tenth year in business, and we feel Jorge and his team are a good fit for our clients.

David and Barbara Toboni
Able Computers
 
 
 

Spring Snapshots

Photo by Barbara Toboni

The sun’s embrace triggering one’s shoulders to unwind

Windows so clean I can’t tell if I am standing inside or outside

Hummingbird playing in the spray of my sprinklers

Dazzling orange lilies and pink frilled azaleas blooming on my back porch

Tabby cat scratching her back in the pebbled dust of the vegetable garden  

A fragrant fusion of rose, lavender, and jasmine while out for a stroll 

The remembered scent of Grandma’s towels washed in Sweetheart Soap
and hung out on a line to dry

Snacking on a ripe, creamy, avocado

Tasting a ripe mango and dreaming of a sunny locale far away

First drive of the season out to the coast along with the first sighting

of the sea and its magnificence


HAPPY MOTHER'S DAY!