The Apple Tree: Raising 5 Kids with Disabilities and Remaining Sane

By Linda Petersen

The birth of Linda Petersen's multi-disabled brother, and her unconventional home life, shaped her total acceptance of individuals with disabilities. Her first son was born blind, and the four subsequent children whom she adopted had a variety of disabilities, including profound deafness, attention deficit hyperactivity disorder, post-traumatic stress disorder, reactive attachment disorder, Dissociative Identity Disorder (multiple personality disorder), severe sensory integration deficit and Asperger's Syndrome.
This book explores the heartwarming, heartbreaking and humorous adventures of these children in their quest to become successful young adults. Ms. Petersen's parenting suggestions and view on parenting children with disabilities are priceless!

• Language: English
• Publisher: BookBaby
• Release date: May 12, 2012
• ISBN: 9781620959596

Book preview

Us

Chapter 1: From Whence I Came

I have led extraordinary life! I have come to expect days brimming with laughter, love, sadness, joy, acceptance, compassion, hard work and inner peace. In order to understand who I have become and why I have chosen to add such interesting children to our family, one must understand from whence I came.

I was born in the 1950s to a mom who desperately wanted a child and a father who was less enthusiastic but agreed to have children because he wanted to please the wife he so adored.

During World War II, my mother, a vivacious young woman, volunteered for the United Service Organization. She loved to jitterbug, and every Friday night she went to the USO Club and danced with servicemen on leave. Pretty, with a lean figure, smooth skin, bright brown eyes and dark red hair, she became a favorite at the club. But this Friday night dancer faced drearier daytimes, regularly working twelve-hour shifts in a brassiere shop, fitting overweight women for their undergarments. She did that from breakfast through dinner, sewing with cloth and grommets, twelve hours a day, six days a week. Her only escape was that Friday night dance.

She was caring and conscientious and treated all the servicemen equally. She spent time with each and every one, never playing favorites and making everyone feel comfortable, even those who could barely dance. Often, she sacrificed her cherished time on the dance floor and just sat and talked with the men. She listened compassionately to their wartime horror stories and provided solace and understanding. Compared to their experiences, her life was trouble free.

Other than when dancing, she did not hold hands with the servicemen, and, heaven forbid, she never kissed any of them. She was very chaste. (My how times have changed!) Every man received her equal attention…until she met my father. Trained as a soldier, he had yet to visit the battlefield. This spirited young man often led crowds in singing around the piano and was a Ping-pong champion. He taught my mother the game, which she too grew to love. Of Swedish descent, he was handsome, tall and lean, with light brown hair and hazel eyes. He took pride in his appearance and he dressed meticulously. His confidence, zest for life and complimentary way captivated her. During those six weeks he was on leave, they fell in love with a passion that only a soldier headed off to war and the love of his life could evoke. Before my father shipped out to Germany, they became engaged, albeit without a ring because neither had any extra income. As was so often the case in those days, they would not see each other again for four years, but they corresponded regularly in handwritten letters that would take months to arrive, if they were received at all. My mother’s correspondence was always breezy and upbeat. My father’s was brief, often censored with black marks to hide his location or details of his mission. However, he wrote adoringly of his love for my mother and her wonderful traits, which heartened her and enabled her to endure the situation with patience.

Although she missed her fiancé terribly, my mother continued to attend Friday USO dances. During those years, she served her country in a different way, jitterbugging with the guys and giving them a 1950s version of a good time while conveying to every serviceman her commitment to her absent fiancé. If possible, she became even more chastely, saving herself for the love of her life.

When my father returned from Germany, my mother still felt that he was the love of her life, although his wartime experience dramatically changed the outgoing young man who had left four years earlier. He no longer enjoyed dancing or Ping-pong. He disliked crowds, and his appearance, once immaculate, had deteriorated. He had gone from meticulous to messy. His hygiene was poor and his hair, once it grew back, was rumpled and scraggly. However, my father was, and would be for the rest of his life, madly and devotedly in love with my mother. Living during the Depression as one of 13 children with her grandmother who scrubbed floors for a meager living, my mother had not received much love or attention up until this point in her life and she was in her glory with my father.

They were married with only a handful of friends in attendance, as much due to poor economic circumstances as to the fact that my father had an aversion to crowds. His distaste for being with other people was inversely proportionate to how much he loved my mother’s company. For their entire life together, he never missed an opportunity to be affectionate, daily telling her many times how much he loved her. They held hands regularly, and he often gave her a pat on the arm or a kiss on the cheek, his hazel eyes brimming with love. He put her on a pedestal and treated her like a queen, and she beamed with happiness in his presence. They made the perfect couple, and spent their entire married life giddy as school children in their love.

Their everyday life mirrored many others of the day. They worked long hours and scrupulously saved their money. My mother continued to work at the brassiere shop and my father began his career as an architect. They bought a small, run-down tenement, and, when they were not at work, remodeled the apartments one by one. My father did the electrical and carpentry work, my mother the painting and wallpapering. They stayed in the least suitable apartment, often without electricity or running water, as they renovated it. Once completed, they would rent it and move on to the next quarters most in need of repair. Much love and hard work filled their first decade of married life.

For my mother, having children was just a natural circumstance. They never used birth control and would have welcomed as many children as The Lord saw fit to give them. However, my mother and several of her friends had been unable to conceive immediately post-war, or for years to come. My mother once explained to me that shots were given to the soldiers to prevent them from getting girls pregnant during the war. Due to her difficulty conceiving, she surmised that the effects of that shot lasted will into their childbearing years. After nine years of trying, I was finally conceived and born in 1954.

When my mother went into the hospital for my birth, she encountered a medical culture that anesthetized women at the first twinge of a contraction. She woke up hours later, staring into my red, scrunched newborn face. Fathers were limited back then to regular visiting hours, which was fine for my dad who abhorred hospitals. He came only once, checking on his beloved wife, who seemed no worse for wear, and peering in at me behind the glass wall in my bassinet. Breast-feeding was discouraged and my mother was instructed to stay in bed to recuperate for the full week of her hospitalization. I stayed in the nursery, cared for by the nurses.

Once home with a newborn, my mother officially became a housewife and she loved it! My parents had managed to save considerable money by renovating several tenement buildings, so she no longer needed to work. She loved the lifestyle of caring for little me, cleaning the apartment, and preparing wonderful meals that she set on the table as soon as my father returned from work. She made sure to bake a cake or a pie daily to satisfy his sweet tooth.

By this time he was carving a successful career as a brilliant architect who designed modern office buildings with lots of windows and steel, the style in the 1950s. As his career flourished, so did his eccentricities. Fused with his creativity was an edginess he could not tame. He became contrary and secretaries refused to work with him. Lacking people skills, he chose to work in seclusion. Because he was extremely productive, his company tolerated the odd work habits that reflected his artistic persona. He hardly fit the role of a traditional professional, and began to sit at his drafting table in his undershorts. (Yes, in his undershorts!) He believed that wearing pants constricted him and prevented ideas from flowing freely. To accommodate his work style, his office windows were painted black so no one could look in. Fortunately, he was socially conscious enough to don his pants each time he left his office!

Four years after my birth, my brother Curtis was born. I remember it distinctly because my father drove my mother to the hospital and dropped her off, leaving her in the care of a capable attendant. Unaccustomed to spending time alone with me, he bought me a huge bag of miniature Reese’s peanut butter cups and plopped me in front of our small black and white TV. What a wonderful father who bought me candy and let me watch Ed Sullivan and Gunsmoke, shows that were on way past my bedtime! I was so happy!

My mother was not. When she awoke after giving birth, she was not allowed to see her new child. Her somber-faced doctor gravely related that her son was deformed, probably would not live long, and if he did, would lead a useless life. As was customary in those days, the physician encouraged her not to see her baby and informed her that he would be admitted to a local institution for children like him. She had most likely come into contact early in her pregnancy with someone who had German Measles, the doctor explained, causing Curtis to be born with Rubella Syndrome; blind, deaf and an imbecile (the actual medical term for severely developmentally delayed in the 1950s). In a fatherly manner, the doctor told her that she should forget about her infant, and that she was young enough to have more children who would be normal. Left alone in that hospital room, she sobbed in despair. While she always was a person to heed the advice of others, especially doctors, she was not sure she could agree to not take home her own baby, however disabled he might be.

My father visited once, but his distress over my mother’s unhappiness overwhelmed his ability to return. His beloved wife was upset and he could do nothing to make it better for her. He left her in the care of her doctors who were much better suited to deal with the after effects of delivering such a severely handicapped child. My mother cried for a few more days, then dried her tears and demanded to see her son. It was ill advised, the nurses told her, because it would only make it harder when she went home alone. But she insisted, so they relented. It would be great to report that when they brought Curtis to her, she looked at him and thought, What a beautiful son! He looks perfect and of course we will keep him! But life does not mimic fantasy. He was less than three pounds, with a misshapen head, huge ears that stuck straight out sideways, and scrawny arms and legs that flopped limply at his side. The major problem she focused on was the gaping hole in his face, a cleft palate. She tried in vain to ease his screaming cry, which sounded like a kitten with a piercing screech. She was his mother, she should love him at first sight and she should be able to quiet him! But Curtis’ disfigured face prompted no immediate love and his screaming never abated. When the nurses returned to bring him back to his bassinet, they had to dispense a little blue pill to calm my devastated mother. She remained overwhelmed for a few more days, and continued to consume her fair share of little blue pills. Eventually, though, guilt caused her to accept that Curtis was her son, problems and all. How could she ever turn away a child of hers and doom him to a useless existence in a ward of other imbeciles? She decided to do everything in her power to care for him as best she could.

The homecoming for mother and son was a sad time for all of us. Unable to suckle, Curtis had to be fed with an eyedropper. Often, the precious formula spilled from his mouth and was wasted. He cried constantly, and, as he grew, his kitten screech grew more into a cat’s mating shriek. On those rare occasions when he did sleep, my exhausted mother flung herself onto her bed. I regularly heard her sobbing in her room. My father, unable to tolerate the stress and the constant crying, threw himself into his work, often toiling 15-hour days. The heavy workload distanced him from the sadness and provided the extra money needed for Curtis’s medical care. I couldn’t fathom what was happening, all I knew was that our once happy family was now perpetually sad. My mother who had so conscientiously fed me nutritious foods, shielded me from television and imposed early bedtimes, suddenly no longer cared what I ate, when I went to bed, or what I did, a very disconcerting sea of change for a four year old. Staying up late to watch Gunsmoke lost its allure.

One day when my brother was about two months old, for some inexplicable reason my mother stopped being sad. She looked at Curtis differently, and her demeanor changed. She began to talk to him softly and lovingly, as a mother does to her infant, and soon the crying lessened. She sang to him softly while spending hours trying to feed him formula. She bathed him in warm water that seemed to soothe him. She dressed him in the cute baby boy outfits she had bought at the second hand store. The doctors knew that he was almost blind, but he was found to have some hearing, so she carried him around while she did chores, talking to him constantly. Most important of all for my father and me, her old personality, although not quite as joyous and bouncy as before, began to reappear. She stopped crying and started to smile again.

She threw herself into providing the best possible life for Curtis. There was a constant round of medical appointments and therapies. My mother would gather us up and we would travel on the bus to and from the local children’s hospital. Although Curtis had surgery to correct his cleft palate, he never gained the ability to suck or speak normally. Feedings became a little easier, though, after my mother learned to add thin oatmeal to the formula. To everyone’s amazement, Curtis began to grow and thrive. Instead of the regular baby sounds and toddler words that normally emerge, guttural sounds emanated from his mouth. My mother soon became adept at deciphering the sounds and meeting his needs. They understood each other and they were communicating! His muscle tone remained floppy. Sitting, rolling over and standing took many years more than usual, but, with therapy, he eventually learned. He even began to walk, although he would need a hand for steadiness. As he aged, his feeding improved, although he has never really been able to chew and swallow food normally. He actually developed into a happy, sweet little boy with blonde hair and bright blue eyes. His crying ceased and contentment replaced it, along with contentment for the whole family.

Chapter 2: We Earned Enough Travel Miles to Reach the Moon

Once my brother’s medical situation stabilized, my father emerged from his self-imposed mode of working to avoid conflict. Instead of logging 14 or 15-hour workdays, he wanted to quit his job and travel the country, picking up odd jobs here and there. My mother, who was torn between this man she so adored and the need to raise a family, which included medical appointments and schooling, convinced him to travel for three months on and three months off. His company was ecstatic that he had not quit altogether, so they readily agreed to this schedule. And so our vagabond lifestyle began!

My father seemed to have to travel to tame his war demons, as though driving away from them. He had submerged them by working, but that clearly was not the lifestyle to which he aspired. Traveling was a joy to him! He purchased a Volkswagen van and renovated it with a bunk over the back seat for my brother to sleep in, and a portable hammock over the two front seats for me.

My mother loved to ride, watching the scenery go by and change daily, depending on our location. My brother loved traveling, also, and he would lie on the bunk looking out the front window. Thinking about it now, I realize that without a seatbelt, if my father had ever been in an accident or stopped short, Curtis would have flown forward right through the front window! As for me, I hated riding because I became carsick. I spent my time sleeping while he drove during the day. The only time I enjoyed riding was when I could sit in the front seat next to my father in the middle of the night when my mother and brother were asleep. My father would often drive for twenty-four hours straight, so I had plenty of nighttime riding. It was very peaceful, with stars shining and the moon glowing. My father generally avoided highways and traveled side roads, so there was always the challenge that we might hit a roadblock, see a deer or drive into uncharted territory. That slim element of danger lurking in the dark made night riding exciting for me.

My father occasionally traveled highways for my brother, who loved bridges, tunnels and tollbooths. His favorites were Pennsylvania’s long tunnels and the Chesapeake Bay Bridge and Tunnel. My brother clapped his hands and laughed all the way through tunnels and over bridges and was elated when it came time to pay a toll. My father would move aside and let Curtis dispense the money out the driver’s window. It seems silly to say, but paying the toll and driving over bridges have been my brother’s greatest joys in life. Even on the back roads, we would often come across a bridge that may have been lacking in size, but was, all the same, exciting for Curtis. As a treat, my father often stopped after we’d passed the bridge, and we would eat our lunch picnic-style, blanket spread on the grassy ground with the view of the bridge in the background.

During our months of traveling, we either slept by the side of the road or stayed in state parks or campgrounds. While my father found the former expedient, I loved it when we spent a few days at a campground. Curtis and I would venture away from the campsite to explore, and I was great at finding playgrounds. Curtis loved the swings and the slides, and I loved the frequent company of other children. Coming prepared with a ball or a jump rope, I could usually get a group of children together to play a game or two. Curtis, who was unable to play, would contentedly sit in the swing while I frolicked with the other children. I made friends easily because, quite frankly, if I did not, I would never have had anyone to play with, (other than Curtis, of course, who was not quite an exciting playmate!) Sometimes, the children disparaged Curtis, or, worse yet, teased him about his odd appearance and the guttural moans he used for communication. I took that as an opportunity to educate them that all people are born different and that Curtis was just a kid like them. I did so politely, regardless of how they had behaved. I only remember one time in my entire childhood when a group of boys continued to tease, so I gathered Curtis up and we returned to the campsite. I learned this turn the other cheek tactic from my mother who never said an unkind word about anyone. She and my father never raised their voices, had an argument or criticized us. Her ability to find the silver lining in everything was the driving force in my personality development, and was certainly a pleasant way to grow up!

Like most people, when I remember historic events during my childhood, I recall where I was at the time. For instance, when President Kennedy was assassinated, I was in the fourth grade at my neighborhood elementary school. It was November and we were living in our home for three months. The schools were closed while we watched the funeral on our tiny black and white television. Other events occurred while traveling. When Bobby Kennedy was assassinated, we were camping beside Lake Michigan, where I caught many large fish that my father grilled over the campfire. I remember when John Glenn was the first man to orbit the earth because we were in Arizona, a place where the night sky was so clear that I could imagine his capsule twirling above the earth. Neil Armstrong walked on the moon while we camped among the bluegrass in Kentucky. When the Beatles’ Yellow Submarine came out, we were staying at a campground in South Dakota and some teenagers I had befriended introduced me to the song. It was one of the few tunes that came to have sentimental meaning for me, as I did not generally listen to the radio. Also, around this time the song He Ain’t Heavy, He’s My Brother debuted. My family was visiting Mount Rushmore and I remember humming the song and proudly giving my brother a piggy back ride while viewing the huge stone figures.

During our travels I made a lot of different friends and experienced many new things that I may have never experienced otherwise. I learned to water-ski in Louisiana, climbed a mountain in Maine, white-water rafted in Wisconsin, and sledded in the snow of Colorado. The experience that most affected me, however, happened in Georgia. As my father traveled south on Route 301, we often stopped at campsites along the way. He seemed to like Georgia in the winter because of its moderate temperatures. This was during the 1960s, when the bathrooms and water fountains declared: For Whites Only. I was confused. Did that mean I had to wear a white shirt? If so, I didn’t have one, so where would I go to the bathroom? My mother ever so quietly explained the meaning, as though by whispering it, no one would hear and no one would be offended. I was flabbergasted! What did they MEAN; only Caucasian people could use the bathroom or get a drink? Did that mean the African American girls with whom I was playing jump rope had to go thirsty or pee in the woods? I could not comprehend any logical reasoning behind such rules. One night, however, as we were asleep in the woods next to a gas station, I came to learn that logic does not always rule. We were awakened by an apparent argument. My father jumped out of bed and I awoke, frightened by the angry voices. My father, still in his undershorts, quickly thrust the keys in the van’s ignition. The yelling grew louder and closer, and I could make out the obscene words and names that I knew should not be used to describe an African American person. When I looked out the window, I saw a very large group of angry men dragging an African American man by his shirt collar. They threw him on the ground and kicked him, as he curled into a ball at an attempt to protect himself. My first instinct was to intervene, to open the door and yell at them to stop, but my father knew better. He started the van and we drove off quickly into the night. I had never witnessed any violence up until this point in my life, and I was very frightened. As scared as I was, I am still not sure if I imagined the gunshot in the distance or not. It was a sound that still haunts me. Traveling as we did, with no newspapers or television for news, it was easy to imagine the country as carefree and loving. However, my naïve bubble was burst that night. I officially learned about Martin Luther King Jr. and the civil rights movement. The thought of a prejudice against one group of people, so many African Americans having to