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Acceptance key for children with disabilities |
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Written by Sally James
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Mar 01, 2005 |
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 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.
Alternate futures
When a pediatrician gives a family grave news, 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. 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.
Invisible disability
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.
Intersecting circles
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, see www.seattlecenter.org/SCAReachforIt.htm
Cinda Johnson's full report is available at www.newhorizons.org
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Health & Development 
