90-year-old mother shares experiences as inclusion advocate for son with Down syndrome in new book
Glen Ellyn, IL
In December 1960, Marjorie Sullivan Lee's sixth child was born. After five other children, Marjorie and her husband, John, were used to the routine. But what made this time different from the rest was the diagnosis given by their pediatrician the day after Kevin was born — their son had Down syndrome.
The doctor explained their options, which at the time meant telling Sullivan Lee she could send her son away. She immediately told the doctor, “No.”
This experience, along with others involving her son, Kevin, is described in the book “Bloom Where You Are Planted,” which published this year.
Through this book, Sullivan Lee has been able to share the message that "life with Down syndrome is OK" with parents of children with Down syndrome and those in the community.
“I want to help others learn that people with cognitive disabilities want to be a part of — rather than apart from — the rest of the community,” she said.
And Sullivan Lee has spent the last five decades searching for this inclusion both in the educational system and the community.
Kevin went to a school for people with disabilities away from his neighborhood until he was 17, despite efforts by Sullivan Lee and her husband to keep him closer to home.
The Education for All Handicapped Children Act — the predecessor of the Individuals with Disabilities Education Act, or IDEA — was passed in 1975 and required that children with disabilities be educated alongside peers without disabilities whenever possible, as long as that environment could provide the education they needed.
Based on this new law, Sullivan Lee and her husband initiated a due process procedure that won Kevin the right to be educated in his own neighborhood school with peers who were not disabled.
Kevin was the first person with Down syndrome to graduate from Glenbard East High School in Lombard.
Sullivan Lee then helped found the Parents Alliance Employment Project, which partnered with what is now called the workNet DuPage Career Center to provide credits for employers who hire people with disabilities, creating a way for people with disabilities to get “normal” employment.
Kevin has a volunteer job shredding documents at a government office, which he has been doing for about 20 years. He also takes physical education and individualized reading courses at the College of DuPage.
Even with the improvements Sullivan Lee has seen and fought for during her time, she said not all problems in the educational system and community have been answered; there still are areas in need of improvement and advocacy.
She wants parents of children with Down syndrome to know their loved ones can have a “very nice, happy, comfortable life while living with Down syndrome,” something Kevin has shown throughout his own life.
And just as his mom has enjoyed life with him, Kevin has enjoyed life with his mom.
Kevin said he is proud of the book his mom wrote for him, a book that’s described on the cover as “a story of family love for a special person.”