Tuesday, December 13, 2016

My Father the Fly

Dad and me
You know how sometimes the holidays can make you feel blue because not everyone is still around? I've thought of a remedy. This year I have started a new tradition. Through the magic of my imagination I have decided to share this season with a creature, a reincarnated member of my family. 

For my first guest, I have conjured up my father as a fly. He died in 1982. Say I'm crazy, but it's true. My father is here as I write this, and he is a fly. I've noticed him before so it makes sense. On his birthday in October a few years ago I wondered how he would celebrate in heaven.  He enjoyed photography, tinkering with cars and boat motors, and he loved sailing. I imagined he'd be doing one of those things.

Later that day, as I worked on my computer, I felt a tickle on my arm. I noticed a fly had landed there. I shooed it away, but it was back seconds later flitting back and forth between me and the computer screen. As we played swat-the-fly, I had the odd sensation that I had seen this fly before. Since I had been thinking so much about him, I had hoped for a sign that Dad was still around in some form or another. Wouldn't it be great if our deceased relatives could connect with us?

Dad had been a teasing sort. He liked to get under my skin on occasion. It's no wonder I recognized him as a fly. 

Fast forward a few years. I'm having lunch last week. A fly appears. Odd that it's December and a fly is on the prowl.

"Dad, is that you?" I ask.

The fly ignores me. He continues to feast on my lunch crumbs. You didn't think he would talk, right?

As I write this, I know he's around me somewhere, and I'm going to include him in all my holiday plans. He can help me decorate the house, wrap gifts and bake cookies. He can lie in wait for me to work on the computer so he can pester me as he sees fit.

"It's so good you're here, Dad." I'll say this when he appears. "Want to help me find sprinkles for these cookies?"

Hope you have a great holiday season and are able to share it with all your friends and relatives--real or imagined.


Sunday, October 16, 2016

Celebrating Writer's Week

I just bought a shiny new journal for our 5th wheel trailer. I want to record our travels around the country.The purchase also helps me celebrate Writer's Week, October 16th to October 22nd.
Kathy Thomas, president of the Napa branch of the California Writers Club, was recently awarded a framed certificate in honor of Writers Week by the Napa County Board of Supervisors. Good going Prez! She encouraged everyone in our last newsletter to make life worth reading.

Now all I have to do is get busy recording our recent travels. We bought our trailer in May. In August we spent a weekend at Point Reyes National Seashore where we stayed at Manchester Beach in a KOA campground. Definitely 5th wheel friendly, this spot had all the amenities: outdoor kitchen, fire rings, swimming pool, hook-ups for electricity and water. It was our maiden voyage and my son, Jim, and his wife, Whitney, planned the trip along with her parents, Tim and Dawn, and her Aunt Kristi, Uncle Ralph, and cousin, Jennine. Three RVs in all.

Chase traveled with us. Around dusk the first night he took a jog down to the beach and back and declared to all that he ran five miles. The next morning we all prepared for a long hike to the beach and were pleasantly surprised to find it was only one mile away with a good-for-walking path.

Whitney and Jennine fell in love with a herd of  cows at a pasture along the way. They were beautiful young animals with numbered tags on their ears. They came right up to the fence and greeted us as they posed for pictures. Perhaps they were hoping for treats.

The beachy weather was what we expected for Nornthern California in August. Foggy evenings clearing by noon each day and breezy, but not too cold. Evenings we all shared meals.  

Jim arrived Friday evening in his truck with a trailer carrying 3 kayaks. He's the youngest fishing fanatic in our family. He loves the ocean: the scenery, salty sea breezes, diving, spear-fishing, kayaking, sandy dogs, and all. Toby, his dog, rode up in the motor home with his old friend, Ashley (Whitney's family dog).

Chase and TJ (Whitney's brother) shared kayak #1. Jim and his friend, Daniel, used #2 and #3. Daniel, who had joined us for the day, spear-fished with Jim and he caught a rock fish, the most bright orange. Dave, Tim, and Ralph went fishing from the pier with no luck, so Dave bought fresh crabs from a fisherman and marinated them to go with everyone's dinner. 

The second day, Chase cooked everyone blueberry pancakes served from our trailer--our very first home-cooked meal. Very tasty! We all treated ourselves to one lunch at the pier after the guys went fishing. Great clam chowder!

We had no trouble with the 5th wheel along the way, just a little food spill, because we didn't secure our refrigerator door. Apparently, there's a certain click to listen for when you close the door. It locks the seal. Dawn later showed us our mistake. There had been a small spill, but luckily a Tupperware container saved my rice salad from ending up on the floor.

More trip talk to come. Happy Writers Week!  

Friday, September 16, 2016

News Blast

photo by Mark Morgan

I interrupt this blog post for an important announcement!
Recently my agent, Sandy Fergusen Fuller, of Alp Arts Company, contacted me.
She has sold my picture book, The Bunny Poets to Tannya Derby, publisher at MacLaren-Cochrane. The book will be released in the fall of 2017!
What, you say? I didn’t know she wrote picture books. I was inspired to write the book on a whim after attending a poetry reading at the St. Helena Library. The audience sat facing a podium and a wall of floor to ceiling windows with a vineyard view. While the poet read, I found myself distracted by a bunny wandering among the vines.
This is the only detail I will reveal about the book. More details will come later when we are closer to the release date. And, if I tell you everything now you won’t buy the book will you?
For those of you who did not know, I had tried (unsuccessfully) to sell another picture book on my own before seeking an agent. I found Sandy through the Society of Children’s Book Writers and Illustrators (SCBWI). Sandy, an agent who writes picture books herself, helps authors develop their ideas if needed. Luckily, she liked the concept of that first book and helped me by offering to agent it.
In the meantime, I had studied a bit myself about picture books, and am also lucky enough to have a critique group for support. When my bunny book concept came along I sent it to her. So, I’m hopping up and down here with the news.
Thank you Tannya Derby! And thank you Sandy Fuller!
Now back to my regular series programming!
For newcomers to my blog, I’d like to explain what it is about. My husband and I have raised two sons. Our eldest son, Chase, was diagnosed with mild autism. This has affected our family in many ways. My stories reflect our struggles, but also celebrate our successes. Chase is now a sensitive, thoughtful, and kind man. He is honest, hardworking, and physically fit.
My intention is to collect all of these stories and combine them into a book. Ultimately, I am hoping to help parents and caregivers see that once they get through the struggles of raising a child like Chase with a disability they will come to realize its gift.

Saturday, August 27, 2016


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.
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.

Tuesday, July 12, 2016

Smart Cookie

photo from flickr.com by Millie
By the time Chase started middle school my file of paperwork regarding his health and education could create a how-to manual: How to Grow your Child from Seed. It’s an entire volume of clinical studies: doctor records, school reports, and special education plans. I won’t throw them away because our Chase is a fascinating fellow. I’m always looking for ways to understand him.
Now I’m reviewing one document, which summarizes the many evaluations Chase had prior to age 13. One study from second grade brings back difficult memories. Mildly retarded.  Before this study, I believed his delays were due to autism—that autism was his only issue. I was wrong. Along with an intelligence test, a nonverbal test was given. Results confirmed two issues: autism and mental retardation. 
There had been some discussion about middle school, whether or not Chase was ready—physical versus mental age. I had been in denial about my son growing into a man. I tried to ignore the clues, but eventually I had to answer the question, Where did that mustache come from? 

A psychologist had concluded that Chase’s placement in a 7th grade special day class appeared to be appropriate. Fifteen students in all made up his class. I met their teacher, Ms. Hanson. A patient woman with a plan, she had developed a positive reinforcement program that involved cookies for good behavior. Perfect. What kid doesn’t like cookies? 

Chase’s favorite subject had been math. He knew his multiplication tables by heart, but he lost track when it came to problems with two and three place numbers like 146 X 17. We tried division too, a good review for me, but not so much for Chase. The concept was too advanced. I started to realize the extent of his disability when I helped him with homework; he had trouble retaining information. We solved problems one day and he forgot how the next. This was frustrating at times, but we kept at it until his worksheets were complete.
One day I asked Ms. Hanson, “How can this be helping Chase? He doesn’t seem to understand.”
“As long as he’s willing to try, why not? Every day he wants to take home extra worksheets.”
“You mean more than what is required for homework?”
“Yes. He seems to enjoy the practice.”
I didn’t let on how much time I had spent helping him. While we talked, my eyes drifted around the room and settled on a package of cookies left open on a counter. “Ms. Hanson, does Chase earn extra cookies for the work he turns in?”
“Sure. All the kids do.”
I left the classroom feeling duped. My son was one smart cookie. He was using me to help score extra treats.

Wednesday, June 8, 2016

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!

Monday, May 2, 2016

Clueless: Part Two

Chase, Jimmy, and Frog
For me to explain the effect of having a sibling with autism, I would have to be that sibling. At times I know it couldn’t have been easy for Jim—now an adult—to have an older brother with autism, but I can only tell you what I observed.  
Because Jimmy had a naturally outgoing personality, I thought it would inspire Chase to come out of his shell, but his autism affected the way he responded to everyone, including his little brother. As far as big brothers go, Jimmy might have felt slighted. For instance, when he found a frog and showed it to his brother, he might have expected a high five. Instead he heard nonsense sounds like AAA or EEE, or silly sentences strung together by random words. One I remember that makes me laugh now—Happy seatbelt day—had been embarrassing at the time. What did this actually mean? I have no clue. Perhaps he was excited about a car ride, but when said randomly like in a supermarket it was total lunacy. I can’t imagine how his little brother felt.     
When Chase started special classes at an elementary school, four-year-old Jimmy seemed lonely. We live in the same rural neighborhood where he grew up, and few friends lived nearby. Occasionally I arranged play dates with other children, or took him to a park, but that wasn’t enough to keep Jimmy busy. As a remedy, we enrolled him in pre-school.
We chose St. Helena Cooperative Nursery School. First built in 1888, it was a sturdy old building with a working chapel bell on top. Over the years it had housed a number of schools, but it became the Co-op in 1966. Because parents helped to run the school it was affordable, and Jimmy attended for two years. His second term was tuition-free, because I was able to work as the school’s treasurer.
 The first morning I looked forward to dropping Jimmy off and waving goodbye. I certainly could use the ME time. Not so fast, Mommy. Kathy, the school’s director and her assistant, Darlene, invited me to join their morning circle. We introduced ourselves, sang songs, and were given the rundown of the day’s activities. Afterward Jimmy and I said our goodbyes. I was a bit miffed at how easy it was for him, but I knew he was excited to get on with the playing.
I always thought a mother shouldn’t make comparisons between her children, but I couldn’t help remembering Chase on his first day of pre-school. His handicapped class scared me. It had been heart-breaking to watch the children try to respond to each other. Some were so limited in their capacity to understand what was happening that I had wondered how it could help them to try. Just to think of my son’s inclusion in that class had been painful, but in my heart I knew he needed to belong there for a time. Giving up was not an option.
By comparison, watching Jimmy adapt so completely, so willingly, was heart-warming. I enjoyed his circle activities as much as he did. Still I was a young mother and had just as much to learn in pre-school as my son.   

Thursday, March 31, 2016

Clueless: Part One

Mom and Jimmy
Chase was four years old when his brother Jimmy was born. Like Chase, he was premature, but he stayed in my womb two weeks longer, and his hospital stay was shortened too. My doctor had warned that another pregnancy could result in another preemie, and although I tried to get more rest, my baby body could only accommodate so much. I envied the mothers that brought home their babies a day or two after delivery.

Home Jimmy came—albeit late—and it was then that I noticed a difference in their behavior as infants. Eye contact for one thing, I felt a strong connection with Jimmy especially when I fed him. Although Chase’s eyes had met mine, the pull on my emotions seemed stronger with Jimmy, but because Chase was my first, I had no frame of reference.

Jimmy turned his head when I said his name, tracked the movement of my mouth whenever I spoke to him, and reached for me to pick him up. Chase didn’t always respond to his name and happily entertained himself when I left him alone in his playpen. Family and friends had dubbed Chase the “good baby.” He was quiet and seemed content most of the time. I remember thinking how lucky I was that Chase didn’t need all my attention. 

Cuddling felt different too. Jimmy snuggled against my chest and wrapped his arms around my neck which created a pleasant bond between us. When I held Chase it was awkward, much like cradling an appealing bag of groceries, and as he got older, he preferred to attach himself to my back. My hair fascinated him, and he buried his face in it, like the union forged between a mother and baby monkey.

Feeding time for Jimmy seemed to be the only time that Chase showed an interest in his brother, and while I understood there could be jealousy, I hadn’t anticipated what Chase would do about it. As soon as he saw the two of us settle on the couch he acted up, whining, shrieking, and leaping about. Going into another room and closing the door was out of the question. I tried it a couple times, but it amped up the noise, and Chase needed supervision. A four-year-old out of control is unsafe.

“NOOO BABY,” he screamed one day and I was shocked—it being one of his few audible sentences. At least little brother got him talking. What caught me off guard was that while all this was going on Jimmy seemed to find the situation amusing. A grin would settle on his little face like the two boys had planned my impending madness together.

Whenever I could arrange it I’d have Dave distract Chase during a feeding, but unfortunately the man also needed to work. I tried some strategies on my own like spending time with Chase beforehand, or offering him toys or coloring books. But feeding times were unpredictable and Chase had a short attention span.

It’s hard for me to admit this, but I began to resent Chase; his disturbances were robbing me of the time I needed to nurture my new infant. There was no more wondering if Chase would improve with age. At four, something was very off with him. It took his baby brother to teach me these things.

Friday, March 4, 2016

Doctor's Orders

Dave, Colleen, and Doctor watching over Chase.

It’s finally morning, thirty hours of labor, and no bouncing baby boy, at least not yet. I haven’t slept and Dave is somewhere out there able to enjoy his freedom, while I lie here sideways in my hospital bed fastened to a fetal monitor while clutching my giant beach ball belly.

“How much more waiting is good for my baby?” I ask the nurse as she fiddles with my IV bag. The steroid drug is designed to slow down my labor in order to help Chase’s lungs develop for his premature birth. Although I like what the drug is doing for him, I don’t like the side effects.  I feel as though I drank too much coffee for someone confined to a hospital bed.
“Hang in there,” she says, “the doctor will be checking in again soon.”

With not much else to do, I talk to Chase in my head. Breathe baby, breathe!

I wish my mom was here. She’s gone now, died years ago—much too young—from ALS. Did she have a fetal monitor hooked up to her when I was born? I was a big baby—eight pounds. A few years later—two months before our wedding—Dad died of complications after heart surgery.  Sorry you won’t have my parents, little guy.
I am so tired, but my mind is buzzing. Can you hear me Chase? My sister—your Aunt Nancy would be here if she could, but she lives in Hawaii with your Uncle Gordon, and your new cousin, Sherron, four months older than you.  Some day you’ll meet her. Sherron was full-term, C-section, not a preemie like you, Chase. Why are you a preemie?

I wish someone was here besides just me and the medical staff.  Bet they’re having a nice break right now. I want a break! Before Dave sped from the room, he told me his mom would be arriving soon. Want to meet your Grandma, Chase? I know she can’t wait to meet you.

The doctor pokes his head in the door. “How are we doing?” He wants to check my cervix again. Is it the third time or the fourth?

I tell him that I feel pressure, but there is no intense pain. “How much longer?”

“It will be soon, today,” he says. “Let’s see if we can get you some rest before the big event.”
He orders a sedative. “We’ll wake you in a few hours, and then induce labor. Things will move quickly after that.”

 I like the doctor’s first order—sleep would be welcome—but the second order? Induce labor? I imagine another IV bag with forceful chemicals surging into my blood stream. Is it really necessary? I wasn’t too happy with the first bag full of jangling nerve juice, but now I am relieved to see they are removing it.

As the steroid sizzles out, the sedatives start to simmer, and I drift off. The next thing I know I am the center of attention. More fluids are administered and soon after a searing pain grows inside. So this is when I’m supposed to do the breathing.
The doctor doesn’t want me to push too hard, but that’s what I really want to do. I want this thing out of me. I’m shouting out my own orders. “Give me something for the pain!”

A doctor says, “Try to stop yelling, Mrs. Toboni. We’ve ordered an epidural.”

Am I yelling? Oh, sorry! Perhaps you’d like an epidural for your eardrums. Why don’t they put mothers in sound-proof delivery rooms so they don’t disturb anyone?
Between contractions I watch the clock hoping for swift pain relief from the shot, but it only takes a fraction of the sharpness away and with it all of the feeling in my legs. They are numb. I’m paralyzed and still pregnant.
I feel Dave clutching my hand and there are tears in the corners of his eyes. “The head is crowning!” I seize his arm as a band of burning, squeezing, pain grips my lower body. “Do the breathing,” he says. We lock eyes as I blow out air.
Another hour passes and I hear the words, “Here’s your boy.” Chase peers at me with shockingly blue eyes before the nurse rushes him away to an incubator. The doctor explains, “Chase needs more oxygen.”  The rest of what he says I do not comprehend, because all I can think about is that Chase is not inside me anymore.

Dave leans over me. “You did it,” he says. Soon he leaves the room to share the news with his mother. She pops in briefly. “Congratulations! We’re going to go check on Chase now. I’ll see you soon, honey.”

Now that Dave’s mom, Colleen, has arrived I feel as if the situation is under control. I am offered a warm blanket and a peace settles over me, as I realize I am at last comfortable. Everyone has left the room and I am alone, but I don't mind. The work is over, at least for now.

Saturday, February 20, 2016

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.

Monday, February 8, 2016

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.

Thursday, January 21, 2016

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.

Thursday, January 7, 2016

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…