Expectations have such a powerful influence on children that the Maryland Developmental Disabilities Council created a hashtag to bring home the point – #ExpectAbility: “These messages can make us stop and be more aware of our assumptions, our actions and the barriers we might inadvertently construct,” wrote former Council Executive Director Brian Cox. Do we assume the boy with Downs Syndrome is slowing progress for the rest of the class and will never go to college anyway? Do we blame the parents for a young girl’s meltdown at the mall? Do we give our children – including and perhaps especially children with intellectual disabilities – chances to build resiliency, make choices and learn from mistakes, or do we make decisions, fill in forms and take actions ourselves just to keep things moving smoothly?
The Transition Work Group is a Montgomery County coalition of government agencies, service providers, nonprofit organizations and parents working to improve the transition of young people with intellectual/learning disabilities and autism from school to adulthood. The group’s Transitioning Youth Resource Fairs (November 2, 2019, at Montgomery College Rockville; March 15, 2020, at the Jewish Federation of Greater Washington in Rockville) are filled with exhibitors offering opportunities and resources to help young people achieve their highest expectations. Just like college fairs, the number and variety of choices can be overwhelming. And just like college fairs, the interests of parents and their soon-to-be-adult children may differ. “Transition” in this case usually covers ages 14-26, but transitions continue well beyond age 26 – and preparation should start much sooner than age 14. Children of all abilities need opportunities to express themselves, make choices that may not always work out and become increasingly independent.
Independence can be a sensitive subject. Perhaps for cultural or physical reasons, a family may feel the need to protect children with a disability and keep them safe in a cocoon even as they become adults.
“Being over-protective can inhibit skill building,” suggests Shawn Lattanzio, a child and adolescent coordinator in the Montgomery County Department of Health and Human Services. Children see risk as adventure. “Let kids experiment with their surroundings. Give them some control and power,” encourages Lattanzio. Even nonverbal children may be able to point to pictures to make choices and gradually improve their decision-making ability. Lattanzio will lead a workshop on “Conversations about Creating Independence” at the November 2 resource fair.
For a young adult, independent decision-making may mean living alone in an apartment, ordering a pizza or just spending the afternoon successfully with a new caregiver. What choices can parents allow their children to make at home and in the community right now? Apple or blueberries, pasta or burger, pick up the toys or take a bath.
Nancy Forsythe’s older son Adrian Forsythe y Korzeniewicz was born with Down Syndrome. “We assumed he belonged,” recalls Nancy. “We knew he had to be in group settings, express his wants and needs. We never made different rules for him. We created in his head the idea that he was not different.” She even remembers asking him the questions we sometimes put to a child who has done something crazy. “Is your brain not working?” “What were you thinking??” As a young adult, Adrian became an actor and board member with the inclusive theater company ArtStream. Writing a fundraising appeal one year, he wrote, “I am not a person with a disability at ArtStream. I am Adrian.”
Perception is everything – including our own perceptions as parents, teachers and members of the community.
Jessica Long is a world-class competitive Paralympic swimmer from Baltimore – a double amputee whose first love was gymnastics. Her parents worried about the pressure on her knees every time she jumped. In her book, “Unsinkable,” she writes, “They told me I could continue with gymnastics if I would try it while wearing my prosthetics, or I could find a new sport that would be gentler to my knees.” With unwanted visions of a prosthetic leg shooting across the room while she did a flip, Jessica was off to the swimming pool. Her parents had made safety the bottom line, but Jessica made the choice to excel in a new sport – and she has now won 23 Paralympic medals in swimming.
In Carolyn Hax’ advice column in The Washington Post, a parent wrote that “It takes practice to let your dearest treasure be an adult and make adult decisions that seem risky from the parental perspective. This is a great opportunity to practice letting go a little and being supportive.” The advice holds for all children.
We want our children with disabilities to be accepted in the community, employed in fully integrated settings and visibly participating in community events. So as parents, we must take risks to get out into the community with our children who have disabilities. Go to restaurants, take advantage of “sensory friendly” movies and plays or start a playgroup with someone in your neighborhood with whom you are comfortable. Nicolette Stearns, a founder of ArtStream, urges parents to look for opportunities for social and emotional growth for parents and children – especially in the arts. “The arts don’t discriminate. Everyone has a chance to express themselves,” says Stearns with characteristic optimism and enthusiasm.
Every engagement or event helps children grow and develop. “Our job is to make sure that our sons and daughters have as many opportunities as possible to explore their communities,” advises George Tilson, a teacher and consultant who helps young adults overcome disabilities and other challenges. He will be talking about “Making Your Dreams Happen,” at the November 2 resource fair (presented in Spanish and English). His Positive Personality Profile identifies a young person’s values, dislikes, idiosyncrasies, work and life experiences, dreams and goals, challenges and accommodations. “Disability itself is not the challenge,” writes Tilson, “rather it is the specific dilemmas posed by the disability. Having a learning disability is not a specific challenge, but not being able to comprehend verbal instructions is.” For each challenge, parents, teachers and the individual young person need to “identify potential solutions, using strategies that help people feel competent, confident and comfortable – and highlight their assets rather than their deficits.” Tilson strongly believes he can identify employment possibilities for anyone with any disability. Veronica could only read at a second grade level but had excellent visual-spatial ability and now works for a company that assembles cables for robots. Sharonne cannot read at all but offers lively renditions of storybooks – she is employed by a nursing facility helping elderly people in the dining room.
Life is a series of challenges, opportunities and transitions for everyone. Our role as parents is to give our children of all abilities as many tools as possible to surmount the challenges, take advantage of the opportunities and manage the transitions.