GLOBAL HEALTH | Addressing the world’s health challenges
11 April 2008
Getting the Best Education: Advocacy, Hopes, and Dreams
By Jeanne Holden
I am a writer, a wife, and the mother of three children. My daughter Jenny is 18 years old. She is pretty, creative, and inquisitive. She is 4 feet 6 inches tall and weighs 85 pounds—about the size of a 10-year-old. She is also intellectually disabled. I couldn't be more proud of her.
But it wasn't always like that. When I found out that my new baby daughter had Down syndrome, my dreams for her were shattered. Down syndrome is a genetic disorder that delays a person's physical and intellectual development. Most children with Down syndrome have mild-to-moderate mental retardation. I was told that Jenny's life would be very limited—if she survived. She needed heart surgery as soon as possible.
After Jenny's operation, I stayed by her hospital bed, following the directions of numerous nurses. Then, two young doctors, still in training, asked me to leave so they could draw Jenny's blood. My presence made them nervous. A half hour later, I was still waiting outside Jenny's door, fearful and wondering if my daughter was all right. Her cardiologist walked by and asked what I was doing. When I explained, this gentle doctor did the verbal equivalent of shaking me. "You are your daughter's advocate!" he exclaimed. "They cannot throw you out. What if she needs a specialist? You have to speak up and protect her interests." How lucky I was to have been taught this lesson when my daughter was so young!
Advocacy. That above all is needed if a parent is going to get the best education for a child with a disability.
My daughter was born at an exciting time in the United States. Legislation had been passed requiring public schools to provide an appropriate education to all children with disabilities. Prior to the implementation of the Individuals with Disabilities Education Act of 1975, many children with intellectual disabilities were not even allowed to attend school. But despite the new laws, my role as advocate has remained critical.
My first step as an advocate was to learn as much as I could—about my child's disability, about federal and state laws governing special education, and about my local school district. I joined a support group for parents of children with Down syndrome before my daughter was a month old. Not only did I learn that there is a wide range of ability among children who have Down syndrome, I learned that educators were reassessing the intellectual potential of these children because their achievements were growing in response to increased educational opportunities.
One of these was "early intervention." Shortly before Jenny was born, a federal law was enacted requiring individual U.S. states to provide educational and therapeutic services—without charge—to infants and toddlers with disabilities. In Virginia, where we live, Jenny was entitled to physical and speech therapy during her first year of life. But demand for services far outpaced the supply of therapists. It was a perfect opportunity to try out my new role as advocate. I was firm, courteous, persistent, and, surprisingly enough, successful. I convinced the program's administrator, a former physical therapist, to provide Jenny's therapy herself.
This scenario has repeated itself many times during my daughter's school years. Quality educational services exist, but a parent has to be knowledgeable enough to locate them and activist enough to get her child access to them.
Jenny entered the preschool program for students with disabilities at our public school at two years of age. She also attended an innovative private preschool that included two children with disabilities in each of its regular classes of 10 children. Jenny thrived in this program, where she learned by playing with her nondisabled peers.
But educating a child with a disability is more than therapy and the right preschool. It means reinforcing every lesson at home, practicing letters or numbers or how to pronounce words. It means teaching appropriate behavior, praising small achievements, and saying, "Just try to do the best you can." It is reveling in your child's abilities and believing that, with sufficient practice, your child will succeed. For example, during preschool, an occupational therapist predicted that Jenny would never learn to write because her muscle tone was so low. Today, she has a neater handwriting than her brother or her sister.
Looking ahead to kindergarten, I met with the director of special education for our town's public schools. Students with disabilities are, by law, to be educated in the least restrictive environment in which they can progress, and this official believed that Jenny would bloom in a regular education classroom. I was delighted! However, neither she nor I had anticipated the resistance we would encounter. The local school's principal didn't want special education students in regular education classes. She didn't even want students with disabilities walking into school with their nondisabled peers.
I could have protested in court. Instead, I convinced the special education director to enroll Jenny in a more progressive public school. This official also appointed me to two educational advisory committees. I was able to collaborate with teachers to improve special education programs and to change the attitudes of those who saw students as their disability labels, rather than as children first.
By the time Jenny was in third grade, she was fully included in a class that was team-taught by a regular education teacher, a special education teacher, and an aide. Jenny gained new friends and role models. The other students gained compassion for children who looked or sounded different.
My role was to help Jenny's teachers create her Individualized Education Program (IEP)—a cornerstone of U.S. special education law. We needed to fashion a totally individualized plan to determine which supports and services Jenny would receive to enable her educational progress. Most teachers welcomed my input. Some, however, wanted me to simply agree with their suggestions. But I wouldn't be intimidated. Who else knew that Jenny was a visual learner who would be overwhelmed if math problems were crowded together, but could do them if they were spread out? I had important insights to provide.
Throughout elementary school, Jenny worked on the same curriculum as her nondisabled classmates, but her assignments were reduced in length and complexity.
Jenny's success in school made it easy to encourage her outside interests. She won medals running races in Special Olympics. She played soccer in a regular league and "Challenger" baseball for children with disabilities. Jenny joined Girl Scouts, and I became an assistant leader because it made others more comfortable about including her.
Like her siblings, Jenny was enrolled in our synagogue's religious school. I asked for an older student to be assigned to help Jenny in class because there was no special education program. They worked hard, but it was worth it: At age 14, Jenny led her own Bat Mitzvah service in English and Hebrew, accomplishing the same goal as the students who did not have a disability. It was her proudest moment. Now, Jenny is a teacher's aide in the religious school's kindergarten.
While the public elementary school program provided a good experience, middle school presented problems. Because the public school program for students with mental retardation was not academically challenging, and it was physically isolated from the rest of the school community, I enrolled Jenny in the local middle school, which only offered limited support for students with intellectual disabilities. But this created another problem—too much material was being taught too rapidly for Jenny to absorb. I had to find a solution in time for high school.
I enrolled Jenny in a small, private Catholic high school that had a "modified inclusion" program called "Options" for students with intellectual disabilities. Options students are taught academics in special education classes and are included with regular education students for electives such as art or acting. More importantly, the school strives to fully include Options students in the school community. About 90 regular education students volunteer each semester to give up study halls and, instead, help Options students in their classes. Many of these students join Options students for lunch and after-school activities. It is considered "cool" to hang out with students with special needs.
Jenny couldn't be happier. She takes part in the school's clubs, sports events, and dances. She has written a recurring column for the school newspaper. She was in the school play. It's really quite incredible. Until she was five, Jenny didn't speak a full sentence. Today, she reads school announcements on a closed circuit television program broadcast throughout her high school, a school where the vast majority of the students do not have disabilities.
Of course, I've had to intensify my daughter's lessons in self-advocacy. When she arrived at Catholic school, the regular education students assumed that she was not crossing herself before prayers because—as a special education student—she could not remember how. It never occurred to them that Jenny might have made a choice not to cross herself because she is Jewish. But a parent of a child with a disability must teach self-advocacy. If we do not teach it, how can we hope our children will achieve any independence?
Jenny is currently a high school senior. What will she do next? We have looked at public school vocational programs. But Jenny has her heart set on attending one of the new college programs for students with intellectual disabilities. Such programs are expensive, but we are considering it because she loves to learn.
Jenny's goals include getting a job working with children. She also dreams of having a boyfriend and getting married. My hopes for Jenny have been replaced by her own. A good education has given her a promising future.
The opinions expressed in this article do not necessarily reflect the views or policies of the U.S. government.
