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!

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.   

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.

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.

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.