Ignoring people with disabilities is an age-old problem. Breaking free of its stigma poses another. Parents of children with disabilities find that recognition of their child as a child first is the key to grounding themselves as they begin a new lifestyle.
Today, parents of children with disabilities expect no less than any average parent as they navigate their family in a way that focuses on the positive contributions they can make as individuals and as a family unit. The role the child will develop in society is a collaboration of family and professionals who are committed to being the foundation of acceptance. The three families here are works in progress. Their stories -- a collage of emotion, strength and resolve -- show what it takes to raise a child with disabilities.
The Russell Family
Helen and Mark Russell exude a deliberate energy that has served them well during a number of job-related moves across the country as they coped with resettling in new places and raising four children.
Their resilience was tested, however, when Martin was born in 1995, at just 29 weeks' gestation due to a group B strep infection that Helen was unknowingly carrying. At birth, Martin suffered from septic shock and a runaway infection. Twice, he almost died.
The infection left Martin with severe visual impairment and cerebral palsy. The doctors encouraged the Russells to be active and involved advocates for Martin, but they cautioned that Martin's prognosis would be constantly changing.
Not long after, the Russells moved to Herndon. The supports they found most valuable were their relatives, linking with other families in the same position, and finding the Fairfax County Early Intervention System, which the Russells say was a source of tremendous help.
The Russells compare Martin's life to a marathon: "He's running his own race, and he'll get to the finish line in his own way and time," Helen Russell says.
"People need to have higher expectations for Martin rather than dismissing him," she declares. "Otherwise there's no cause for him to be motivated. His barriers tend to blind people. We've been able to help others, including his teachers, understand what Martin can do."
Mark Russell agrees, adding, "People tend to think in categories: normal or not normal. `Not normal' makes people uncomfortable. How do we help people blur these lines?"
Among the realities with which the family must contend are expenses related to having a child with disabilities: life-long therapies and medications -- some not covered by insurance. Martin's siblings struggle with their roles, too: Marjorie, 12, knows how to be flexible and looks on the bright side. Harrison, 9, finds talking about Martin painful.
In a world that too often stiffens and looks away, the Russells practice what they call normalcy outreach. When out in public places with Martin, the Russells encourage inquisitive children to explore Martin's wheelchair and to ask questions about him.
Overall, the Russells are believers in the possible. They encourage Martin's active participation in society and they invite society to join with him -- supporting him when he needs it, but mostly believing that he deserves the opportunity.
The Staisey-Divorski Family
Everyone relies on intuition now and then. It's what Nancy Staisey leaned on when her 2-year-old, Lora, inexplicably began dropping things. Nancy and her husband, Stan Divorski, thought something was wrong, but doctors said not to worry -- saying they'd all look back on this and laugh.
But something was wrong. An evaluation by an occupational therapist determined that Lora was having tiny seizures. They grew so frequent that by the time she was 3, Lora was having up to 80 seizures an hour.
After endless tests and hospitalizations and exercises, including charting Lora's every move, she was put on a series of medications, including one normally used for treating malaria. Two years later, Lora, then 7, was taken off the medication because of side effects. The seizures, mysteriously, stopped and didn't return. Lora now has language-based learning disabilities. Memorizing, finding the right word, and auditory processing are difficult for her. Her success in school is dependent upon academic accommodations.
When the family moved to Fairfax County in 1997, they were forced to enroll Lora in regular education classes; the special assessment clinic was temporarily closed. Months later Lora was identified for special education and the Individualized Education Program (IEP) process began.
The system failed her. Generally, the IEP suggestions were ignored. Tests, homework, classroom seating that should have been adjusted to benefit Lora, weren't. Meetings with school committees didn't help. At one session her mother discovered that many participants were unfamiliar with Lora's background -- let alone her hopes and dreams. "That's what [parents] contribute. The IEP should reflect her hopes and dreams," says Nancy Staisey.
Their voices continued to go unheard, so the Staisey-Divorskis hired an educational consultant and an attorney -- to no avail. Consequently, Lora now attends private school where she is currently happy, motivated and eager to learn.
The Staisey-Divorskis still believe in public education. "But we can't sacrifice Lora. We looked for a school where we could be certain that teachers would recognize Lora's strengths and adapt for her disabilities," says Stan Divorski. Lora's older sister, Staisey, 19, recalls a former preschool teacher: "I realized that people could be mean. I remember that I had loved that teacher when I was her student, but she was mean to Lora."
The message this family offers is clear: Be systematic and persistent. Do things to make your voice heard. And know as much about your child's condition as possible.
The West Family
Fowler West's first word came at age 15 months. His parents, Anne and Fowler Sr., were concerned, but doctors encouraged a wait-and-see approach -- a recommendation that played into the Wests' natural inclination to seek refuge in a state of denial regarding the well-being of their son.
As Fowler grew older, the problems multiplied, and he was finally identified as having learning disabilities and language impairments. The Wests chose to mainstream Fowler. He attended public school until third grade, when it became clear that his classmates couldn't relate to him. His emotional health suffered with each successive year. Fowler attended private school for grades four through eight. Now 20 years old, he is a student at T.C. Williams High School in Alexandria. He's a member of the swim team, he has a part-time job, and his mother is encouraging him to get his driver's license.
Although his experience at T.C. Williams has been positive, only a few students socialize with Fowler.
"It's been a slow drip of isolation for 20 years," declares Anne.
Fowler's parents are his social circle, taking him to restaurants, movies and museums on weekends. His younger siblings -- Mitchell, 17, and William, 14 -- enjoy doing generic guy-stuff with Fowler, but much of it stops when Mitchell's or William's school friends visit. Explains Mitchell: "My friends are all great with him. They're solicitous and respectful, but Fowler doesn't have the skills to socialize properly. He can't have a normal conversation."
William feels bad about Fowler's lack of friends, and most of his friends are too shy to include Fowler. As William struggles with questions about Fowler, he reveals a layer of embarrassment. Mitchell has grown to recognize the true colors of people while William is still learning to cope.
Anne West stresses that people have abilities, not disabilities. Fowler Sr. believes that the past 20 years have focused the family inward, and he's more sensitive to how kids interact. The Wests have learned to create five-part harmony -- even when sour notes have come their way. They admit faltering, but they continue on as Fowler struggles for his place in society.
The Russells, the Staisey-Divorskis and the Wests will continue their journeys -- constantly learning, facing challenges eye-to-eye, checking off goals as they are achieved, and encouraging others to be tolerant and receptive.
Combining these elements, the families say, creates the formula necessary for inclusion. They say their true desire, though, is for society to extend its hand as a measure of support -- creating an atmosphere of humanity. It takes no less than this to raise any child.
CAPTION: Marjorie Russell holds her brother, Martin, as he awakens from a nap.
CAPTION: Physical therapy for Martin Russell, 4, involves his mother, Helen, left, sister, Marjorie, 12, and father, Mark.