A Family’s Coping Guide to Down Syndrome

For parents, those mysterious minutes before the birth of a child and the deliriously joyful moments after the baby enters the world are preamble to a lifelong relationship. For Deborah and Andy Bogen, daughter Elizabeth’s birth brought with it the happiness of seeing her safely delivered followed by the bewildering news that she had Down Syndrome. The most critical moments for the Bogens were those filled by the words, both good and bad, offered by hospital staff which would lodge deep inside their vulnerable hearts. The obstetrician’s heartless warning not to get too attached to Liz because they might want to consider institutionalizing her stung the new couple to the core. It was the loving words that the couple would repeat over and over as they began the challenge of raising their daughter. The Filipina nurse on duty told Deborah that in her country children like Liz were considered a blessing in the family and that the whole community would take a hand in raising this special child. And the pediatrician offered the Santa Monica Canyon couple firm hope. “You are going to take her home and love her, and she will give you back more love than you can imagine,” he said. “You will nurse her and do all the things we talked of last month in my office.” Deborah and Andy set out on a course of raising their special child, building on positive attitudes that would make the job easier and surrounding themselves with knowledgeable people and helpful counsel that would give them some much needed relief. That first year, now 25 years ago, Deborah began a diary that chronicled the steps the Bogens took to get Liz moving into the mainstream of life. Deborah’s diary, serious, funny and filled with vignettes from the family’s life together, has been compiled in a new book “But Will She Be a Brownie? Lessons from a Daughter with Down Syndrome,” which she has intended as a workbook for other families to read, scribble notes in and refer to often. Deborah and Liz will be talking about their experiences and sign copies of the book on Wednesday, March 3 at 7 p.m. at Village Books, 1049 Swarthmore. From the very start, the Bogens counted their blessings, which included a supportive extended family, living in a city rich in resources for their daughter; having funds to pay for extra help and respite care if needed, Elizabeth’s good health (often children with Down Syndrome have heart and lung complications that require multiple surgeries at a young age); and being resourceful people themselves. When Liz was born, there were few books on the subject, and none that considered the child with Down Syndrome from infancy through independence. “This book was something I really needed to write over a long period of time,” Deborah says. “It’s written in a very plain style, without a lot of jargon, and, very user friendly.” While Deborah follows Liz’s life from the early, getting-organized days, through school days (first at University Elementary School, followed by Santa Monica public schools), to independent living, she doesn’t flinch from revealing her own missteps. “When Elizabeth was born, I had been a teacher of special education for over 10 years. Still when the teachers instructed me in how to help her, I was all thumbs,” she writes. And in her eagerness to “stimulate” Liz, Deborah would often keep up a steady chatter while driving along to encourage her verbal skills.”I remember we were driving along San Vicente and I was telling her all about the coral trees,” Deborah recalls. “Finally, Liz said, ‘Mom, that’s really enough, I’m already talking.’ She was already 3-1/2 or 4 and I’m such a literal person. I didn’t know when to stop.” Early on, Deborah had a feeling that Liz would be strong in the area of language, which she attributes to having developed her cheek and tongue muscles while breast feeding. Her teachers in the Exceptional Children’s Foundation’s Infant Program encouraged families to look for areas of strength in their babies, so Deborah decided to push the language envelope, as she says. Over time, Liz did develop exceptional language skills, which has helped her in establishing friendships, negotiating the public transportation system and working at a job. While language was strong, she was born with extreme hypotonia (low muscle tone) and needed much work in muscle development-balance, sitting up and eventually walking. Apart from helping Liz develop physically, Deborah assisted her in acclimating to the world outside, making friends and navigating her social life. “You have to be prepared to do more than you may like, but it smooths the way for your kid,” Deborah says. “You do extra things even if you were never that kind of person. You have to grease the wheels for her. You have to understand that you will invite more friends over than she will ever get invited.” It was important that other kids knew that Liz and her family were more like others than not. Kids needed to see that Liz had a younger brother, Michael, and a dog and that she played with Barbie. The Bogens as a family did a lot of things with her that other girls do, including watching proudly as she was inducted into the Brownies. Over the course of writing the book, Deborah read portions and got feedback with her friends in her writing circle, and after each chapter was completed, she had Liz read it and add her own comments, which she has done in most chapters. Liz has become an active participant in advocacy and education for people with Down Syndrome. She sits on the board of the Santa Monica Commission for Disability Rights and has served on the board of Best Buddies, the organization started by Anthony Shriver that matches up typical college students with high school students with developmental disabilities. She is a frequent speaker and guest on the local public access TV station in Santa Monica. These days, Liz lives in a condominium not far from the Bogens’ home in the Canyon with assistance from her companion Lucy, who helps her with meals and housekeeping. She takes the bus to her job at Goodwill Industries on Wilshire at Barrington five days a week. Liz and Deborah are deeply connected. Liz calls every morning at 7:30 to check in and is never far from her mother’s heart. “I tell her my secrets, my worries,” Deborah writes in the book. “Often she is my counselor. Who would have thought it? She looms large and takes up a lot of space-a high maintenance kid. Were it not for her, what would I have put in her place?” For more information, visit www.deborahbogen.com