For most people, the circle is a symbol of belonging, of connections and clasped hands. For families whose children often don't fit in, however, circles can look more like fences. Any line leaves someone in and someone out. In this story, families share their view from the outside of some of those circles and the inside of others. They explain the birthday parties that don't happen because it is too painful to throw a party and have only one or two guests. They tell how weary they are of the grocery store question, "What is wrong with your baby?"
While many doors have opened in the past decade for children with physical disabilities, learning differences and behavior issues, today's parents still know the ostracism of the special look, when their child draws a second glance. One mother always keeps her eyes averted from those of other people when her child is drawing attention. "I know it sounds bad," she says. Publicly, she advocates bravely for the civil rights of all people. Privately, the courage she wears as armor is exhausting to carry. The constant sight of pity, fear or curiosity in the eyes of others gets in the way of helping her son. So she just doesn't look.
According to a Washington State Department of Health report, "Disability in Washington State, 2001," there are an estimated 230,000 children in Washington who have a chronic condition that limits their mobility or their learning, or requires special care beyond what is routine for their age. The state Department of Health defines these children as "with a chronic condition." The condition can be biological, psychological or cognitive, which means that a brilliant child in a wheelchair, as well as an able-bodied student with a behavior disorder, might fall into this category.
These state numbers count only those children who have been receiving special services for more than one year.
For parents whose children belong in the above statistical group, there can often be major barriers to entering the many circles of community life. According to one state survey, these families with special needs children find it very difficult to participate in the community that the rest of us take for granted. Grocery shopping, stopping at a mall or even seeing a movie in a theater may require a lot of extra work and planning. While their child probably attends school, parents may find it difficult to attend night meetings of the PTSA. It is hard enough to find a babysitter, but even harder if the sitter needs extra skills for a child's disabilities.
When a pediatrician gives a family grave news about a child's health, some parents compare it to a bomb going off and destroying the imagined future they held dear. Whether that happens in one day, or slowly over years, it begins a process. Most parents of children with special needs grow into their role with stops and lurches, not smoothly and not steadily. One mother of a child with autism says she resents her friends telling her that God gave her this burden because she's so strong. "I don't have a choice," she wants to say back.
Lawrie Williams remembers the two years that she spent in a kind of limbo, waiting for a definitive diagnosis after the birth of her daughter Madison, now age 9.
Madison didn't sound like other babies, and she drooled a lot. Strangers at the grocery store would sometimes tell Williams her baby looked sad or tired. Why should she have to explain her daughter's face to people picking bananas in the produce section? Eventually, doctors found that Madison had suffered a stroke before she was born.
In hindsight, Williams looks back on those frustrating days with much more understanding of herself and the strangers who didn't know better. She sees that her own sensitivity to the comments of others fluctuated up and down, depending on how settled she felt about her daughter's health problems. As time went on, Williams also chose to remind those asking questions that her daughter was listening. "Do you want to tell them about your drooling?" she might ask.
Gradually, Williams has strived to transfer responsibility to her child for facing the world and answering the queries. She takes great joy in witnessing Madison's every accomplishment. The family celebrated the day she first wore a belt to school with her stretch jeans. She had asked to wear one, even though working the buckle had frustrated her fingers up until then. "We practiced and practiced with the belt five times that morning," Williams recalls. In their tight-knit Seattle neighborhood, there are many friends who can share in these milestones.
Seattle mother Rose Yu remembers her son's diagnosis as a shock that left her in a kind of grief. Yu's son Asher, now age 9, was diagnosed with global developmental delays at 18 months of age. Yu is a marriage and family therapist who specializes in helping couples cope with difficult transitions.
Looking back, she can see how her grief progressed through stages. She feels supported by her husband, family and friends, and has found many accomplishments to celebrate in Asher's life. "We were so excited and proud when Asher took off on his bike without training wheels for the first time last summer," Yu recalls. However, she emphasizes that the grief piece of parenting comes and goes. "You cycle through it again whenever there is a milestone that perhaps your child will not reach but others around him are experiencing."
Yu says she now feels "seasoned" but not immune to pining for some of the everyday social events that her son misses. Asher is in a self-contained special education classroom of 15 children at Adams Elementary School in Seattle. "By the time we threw Asher's birthday party last June, I realized that none of the other families had thrown a birthday party," Yu observed. "Families (of children with special needs) are more challenged and many elect just not to have them," she explains.
Although her journey has sometimes been painful, Yu feels that Asher's friendships have helped widen her view of the world and brought her in touch with people she might not have met. He shares a bus ride with students in transitional housing situations who attend the special education program at B.F. Day Elementary. His classroom is diverse, bringing together children of different economic and ethnic backgrounds that might not otherwise have encountered one another. "It pushes me beyond my own boundaries," Yu said.
Drawing your own circle
Parents may discover that getting to know other parents with some of the same challenges can help them find a knowledgeable sympathetic ear. One mother remembers clearly telling a room of strangers that her tiny son could not bear the feeling of socks and their seams, only to discover that almost everyone in the room had a similar story. Parents in the audience all had children diagnosed with Asperger Syndrome, which is thought to be related to autism. Sensitivity to certain touches is a common complaint.
A variety of organizations foster networking between families. Jodi Reimer is the director of one of them, the Arc of King County's Parent-to-Parent Program. Reimer is the mother of Kellen, 14, and Heidi, 17, and lives in Federal Way. With her help, families can find other people to talk to who understand the day-to-day challenges they face. Many choose to join email chat groups where they can be a part of a much larger circle of regional families.
Just being the leader of this program, however, does not make Reimer immune to the social issues of her son's diagnosis of Down syndrome. Just when she thought she had adjusted, Kellen is changing, entering puberty and showing the completely typical desire to not have Mom tell him what to do. Reimer feels that she learns important lessons from the adults with disabilities who are part of the Arc of King County, where she has her office. The Arc is the oldest nonprofit in the state that serves people with developmental disabilities and their families.
Adults with disabilities sometimes tell Reimer to back off more and let Kellen experience the world without her editing. Recently, the two were in a Subway restaurant and Kellen chose to sit down at a table next to a girl his own age. Reimer could tell the girl was perplexed. The girl's father, who had been ordering food, returned to his daughter and asked Reimer, "Do they know each other?" Reimer shrugged. She calculated that it might be more emotional trouble to get Kellen to move than just to let him sit with the girl and her Dad. All ended happily.
To help his peers understand Kellen better, Reimer has done a variety of things over the years. When Kellen was in an inclusive public school classroom in third grade, Reimer visited his class one spring to talk to his classmates. She hid facts about Kellen on papers inside plastic eggs. The students opened the eggs and read the facts aloud. As students learned about Kellen's favorite flavor of ice cream, his pets and his sister, they came to see more and more of what they had in common with him, Reimer recalls.
One girl drew a poster for Kellen that Reimer treasures. Two fish are leaping from a brilliant blue pond. In the sky, the girl printed these words: You are a fish surrounded by fish different than you. I am the water surrounding you with friendship. For Kellen and other fish-children in the diverse world of differences, the water can be warm, but it is also sometimes very cold.
Jenny is a girl in Issaquah who has experienced both the warm and the cold waters of the social pond. When she was 4 years old, Jenny was diagnosed with autism -- a condition that has many faces. Jenny is now 11 and is considered a high-functioning person with autism, who could pass easily as typical in some situations. Jenny has a fantastic memory and can speak very intelligently about the things she likes.
However, the plus of Jenny's abilities can be a minus in some situations. When she misbehaves, speaks too loudly or paces around a classroom, other people may not know that it is because of her brain differences. Instead, they may assume she is badly behaved or defiant. "We can never let our guard down," Jenny's father, Phil Dougherty, wrote in a newspaper article about his daughter.
Jenny is in a typical education classroom in Issaquah and has an aide who goes with her to school. Good days outnumber bad days, but puberty is bringing less tolerance from other children and adults. One neighbor wouldn't speak to Jenny when she walked outside of her family's home in Sammamish. The snub hurt her dad's feelings, although Jenny herself seemed oblivious. "Society accepts us, but with an asterisk. We live in a parallel but alternate universe," Dougherty wrote.
Teaching social skills
Every family makes its own temporary peace with the social reality of their child's physical limitations and behavior. Some families want to limit themselves to the safety of a very small circle that they draw around home, school and a few close friends. Other families seem confident navigating Boy Scout troops and swimming classes at the local pool, and may even help lobby organizations to create classes that are accommodating to children with differences. Some young people with disabilities are even confidently entering big public events, such as beauty pageants and spelling bees.
Felice Orlich, Ph.D., believes that each family has to juggle their child's comfort and their own energy in creating a social sphere. But she would like to see social relationships regarded as essential, just like food and water. Our children need them, even if only a very few. Everyone's social sphere doesn't have to be the same size.
Orlich is associate director of the University of Washington's Autism Center. She has taken particular interest in the social awkwardness that is a hallmark of the autism diagnosis.
Children who fall on the autism spectrum may be almost blind to certain social cues. Typical conversations between people are a choreographed interplay of spoken language and facial cues. When one person doesn't read the cues, they make big mistakes. They may say things that are insulting, without meaning it, or dominate a conversation because they don't take turns.
Orlich and others teach classes on social skills for children on the autism spectrum, in which they help the students learn to make eye contact, read expressions and take turns. Working with Microsoft Corporation, Orlich has been developing software that teaches these skills in a video game format, dubbed Kidtalk. Later this year, it will debut as a tool for therapists to use with groups of children; some day there may be a version for families to use at home.
Helping people with disabilities to have friends may seem less important than helping them read, write or hold down jobs, but Orlich sees relationships as vital to long-term health. Caring about others provides fuel for the whole engine of learning skills, practicing compromise and adjusting to life with challenges.
Orlich sees the social difficulties of autism as a great wake-up call for the wider world to recognize the tremendous importance of teaching social skills to everybody in both schools and other community groups. The growing numbers of children diagnosed with autism are bringing many more research dollars to this crucial area. The resulting increase in discussion about the social realm should benefit every child.
Social blindness can cut both ways. While students in special education classes may study how to make eye contact properly, there are no corresponding classes offered to their peers in how to accept differences and reach out to others. As with other skills, practice makes one better. And it may begin with very small and simple steps.
At the grocery store, there could be fewer insensitive questions and more offers of a helping hand. In school, there could be older mentor students who eat lunch with those kids who don't get many invitations. When summer camps are organized, there could be weeks that promise extra staff for campers who need more supervision.
Warming up the waters of the social pond happens very gradually, with one drop of compassion at a time. If families resolve to think outside the circle and welcome someone new into their acquaintance, they will be widening their own social worlds. One mother of a child with special needs called her son a mirror. His visible differences always bring out the best or worst in people who talk to him. "Whatever is really inside you . . . he will show it to you," she said.
Sally James is a Seattle freelance writer and mother of three teenagers.
Lending an ear, giving a hand
Lawrie Williams at Children's Hospital and Regional Medical Center spends a lot of time thinking about how people can support other parents whose children face challenges. Williams coordinates the Parent Support Program at the Center for Children with Special Needs, which helps families of children with chronic illnesses or special health needs, such as cancer, liver disease or diabetes. Here is her short list of suggestions:
1. Listening makes a difference.
Experts in family support say that when we ask a question and listen so as to truly understand, we offer a rare gift. It is not up to us to solve the problems or to know all the answers... just listen. An easy way to start is by simply asking, "How are things going?"
2. Throw assumptions out the window.
If you know one child and family with special health needs then you know only one, and you can't compare them to others. Each family is in a different part of their long journey, which includes sadness, frustration, and joy.
3. Explore ways to help.
Ask what form your help might take. Maybe it is assistance with laundry, grocery shopping, dog walking or scheduling a play date with your child.
Camp encourages kids to 'Reach For It'
When it comes to making a diverse group of students feel comfortable, the Seattle Center Academy's Reach For It! summer program wins a seal of approval from a professor who studied and reported on their methods.
Cinda Johnson, Ed.D, is a professor in Seattle University's Master in Teaching program with about 25 years of experience in special education. Johnson observed the program in 2003 and had high praise for the way youngsters with special needs were welcomed in and given social support.
Every summer, the Seattle Center Academy provides a two-week camp opportunity for up to 270 middle school students. Activities include dance, music, visual arts, video production and some science. Since 1995, the Reach For It! program has given students with special needs the opportunity to attend and participate successfully in the camp. In 2003, 12 students participated in the Reach For It! program. Each of the 12 had a volunteer partner-mentor (camp alumnus) who spent the whole camp day with them.
According to Johnson, these high school-age mentors were integral to the success of the program. Although most of them had little or no experience with people with disabilities, they functioned remarkably well as companions. Other students in the classes were able to take hints from the mentors about how to react to the students with special needs, many of whom had autism or cognitive or behavior disorders. The mentor model is great, Johnson wrote in her report, because it models acceptance to the other campers.
Johnson indicated that Reach For It! fills a valuable need in the community, as there are not many summer opportunities for children with special needs. Most available camps focus on disabilities themselves, rather than art, music or other enriching subjects.
For more information on the Reach For It! program.
Cinda Johnson's full report is available at newhorizons.org
Originally published in the March, 2005 print edition of ParentMap.