Count Your Blessings

In 1954, my grandmother Natalane Ricci gave birth to twin girls: Janet and Joyce. Both were born one month premature, four minutes apart. Janet weighed five pounds and Joyce weighed three pounds five ounces. In those days, babies less than five pounds were kept in incubators, so Janet went home, but Joyce stayed at the hospital.

Like other babies, the twins learned to sit, stand, roll and walk. But unlike other kids, when they were three, Natalane and my grandfather Olinto discovered they were deaf. When Janet was five, she was diagnosed as autistic and aphasiac, and Joyce may have also had a touch of autism. My grandmother, who grew up motherless, cried when she heard the news because her dreams of raising a normal family were shattered.

"My mom used to say God had a countdown," my Aunt Jill, the eldest of my grandmother's four children, said. "You're it, you're it, you're not, you're not. [She was it] and He gave her a double-header."

According to Amy Homes, an M.D. who wrote "Metal Metabolism and Autism," in the 1950's, only about two in 10,000 were diagnosed autistic. Holmes wrote that today, cases of autism have increased to one in 150 and can be recognized as early as 18 months.

"[My parents] didn't know anyone with a handicap. No one provided services. They were out on the slow boat to China," Jill said.

"We lived over 500 miles from our nearest relatives," my dad Paul, the youngest, said. "The isolation and the lack of immediate support [...] amplified our family's special circumstances." My grandparents' families lived in Nevada, while they lived in El Centro, California. My dad is three years younger than the twins, who are a year and a half younger than Jill. In 1967 my grandparents moved to Westminster, California to make it easier to commute to Janet and Joyce's respective special education schools in San Diego and Riverside.

Both twins went to the Hear Foundation in San Diego every Saturday, and my grandmother had a private speech therapist come to their home during summers. Whenever there was time, my grandparents dragged the whole family to the Cal State Diagnostic Center, Los Angeles, or other nearby cities for more analysis of the twins. My grandparents were very concerned about their children, and anxious to find out what they could do to help them. They took every opportunity available to learn possible causes and solutions for Janet and Joyce, which included visiting professionals from medical fields as well as psychics.

Janet was constantly monitored because she displayed unpredictable and violent behaviors. My grandmother could not even use the restroom without Janet because otherwise Janet would dash off as fast as a newly freed rabbit from its cage. In the 1960's no one locked their doors, and Janet took advantage of that fact. Whenever she broke free from my grandmother, she ran into the neighbor's houses, scrambled up into their closets, and tore through their boxes-as curious as a toddler who just learned to walk.

Janet attended Home of Guiding Hands in San Diego for several years. At age 13 she went to Logopedics in Kansas, Missouri for eight months before she was sent home because her behavior was too hard to control.

One such behavior was her need for perfection. "If she discovered any imperfections she would destroy the item to force its repair or replacement," my dad said. Countless times she broke windows with her bare hands, and cut her arms and wrists because of a tiny crack or flawed putty in the panes. Even as an adult, she continued to destroy imperfect objects. Six years ago, she ripped apart the back of a tightly woven chair with her bare hands because it was old and had a slight tear. Author of the article "Characteristic Behaviors of Autism" Sharon Gillson wrote that self-injurious behaviors (like Janet's) are typical.

After each of Janet's incidents, my grandmother felt frustrated and sat and cried on the couch.

"She would say 'I just want to die, and I want to take Jannie with me,'" Jill said.

"It was hard for us to hear," my dad said. "She never meant it, but she was overwhelmed." My grandmother loved all her children; they were precious to her. However, she lived in a time when there was little information a aabout her children's conditions, and she did not always know how to deal with it.

My grandmother speculated that Janet may have had so many problems because she was dropped right after birth. Jill told me my grandmother heard things like "what happened?" and "uh oh" but she was never sure what happened. Additionally, when the kids were young, they had chronic ear infections and were given myacin, which is bad for hearing.

When Janet was 25, she moved to a group home in Yorba Linda, where she stayed until 2003 when my grandfather died. My dad and Jill decided to move her to another home after they learned her roommate Kim physically abused her.

Janet now lives in a group home of six adults in Anaheim. She takes four to five medications everyday, including pills for her OCD and hyperactivity. For a while she took birth control to regulate her hormones. As a side effect of her medication she has first-level glaucoma, which means she needs eye drops four times a day.

"As she's aged, she's mellowed out a lot," Jill said.

Her new home provides a job coach, and she works everyday from 7 a.m.-2 p.m. and does activities such as decorating stepping stones to sell at the Farmer's Market.

As a kid, Joyce was a tomboy and the best baseball player on the block. She did not develop any language until she was 12-years-old. Jill said in the 1960's a battle raged "between people who thought deaf children should be oral and those who thought they should learn sign language." Before she was 12, Joyce was in the John Tracy Clinic Program, which focused on how to read lips and speak properly. At age 12, my grandparents enrolled her in the Riverside School for the Deaf where she learned sign language.

Joyce had a more normal adult life. She worked for about 20 years as a power sewer for a company called Catalina, where she met her husband Steve. They were married for a year and a half, but Jill said it was only because she was curious about marriage.

"He tried to boss her. She was stubborn," Jill said. "It was like going to college [for her]. She thought, 'I'll try this out for a couple years' and then realized she did not like it."

Joyce divorced Steve in 1980, and lived with my grandparents until they passed away. After my grandfather's death, Joyce transformed. She moved into her own apartment in Aliso Viejo, took interest in sports (mostly the Lakers) and read the newspaper more.

At age 50, after less than one year of life in her own apartment, Joyce she was diagnosed with stage 4 ovarian cancer. My family believed Joyce associated cancer with death because it killed both my grandparents, so we did not tell her right away. HHo However, once she found out, her resilience and her stubbornness propelled her to live much longer than expected.

For two years she endured every chemotherapy treatment and every operation available to her to fight her way back to health. Never once did she complain, and rarely did she reveal her pain, even to Jill-her best friend, who stayed by her side nearly every day and night.

By December 2005, not many options were left. Joyce's chemo stopped working, and my dad and Jill quietly prepared themselves for the worst. In May 2006, at age 52, Joyce's cancer claimed her.

Joyce and Janet's situation had a great impact on my dad and Jill's childhood.

"It changed my birth order," my dad said. "Even though I'm the youngest I'm really the second oldest in many ways." Because of Janet and Joyce's disabilities, my dad often had to watch over his sisters.

Both my dad and Jill feel they developed a good sense of humor because otherwise they would never be happy. My dad also feels he has good communication skills because of his sisters, which helps him in his current job as a director of engineering.

"It was stressful," Jill said. "A lot of times you wanted to let it all rip but if you did you'd be paying for it."

Although their family was not perfect, Jill felt she had a good childhood. Neither Jill nor my dad ever felt sorry for themselves. Her junior year of high school, Jill decided to become a speech pathologist because she wanted to find answers for her sisters' conditions. Now she teaches special education at a public school in Tustin.

"What I learned is there is no one answer," she said. "You don't get a cure you just get the best that person can be."