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by Lisa Kain
A shocking statistic in a New York Times article stated, “90 percent of people who find out they are expecting a baby with Down syndrome decide to abort.” A local Columbus couple, the Bohannons, learned four months into the pregnancy their newborn would be born with Down syndrome. They experienced the array of emotions one would feel when faced with the unknown—fear, worry, anxiety, and in the end, happiness over the addition to the Bohannon family. They were able to gather a wealth of information, and when Kai Adyson, now 2, was born, they were able to fully enjoy her arrival.
It is difficult to know what to expect with any newborn, but the fear of the unknown is even more prevalent when one is not armed with adequate information. As with anything in life, the best medicine is knowledge, which Wendy and Chris Miller learned after the birth of their daughter, Lilly Lane on March 12, 2003. Wendy and Chris were not new parents. When their oldest daughter Lauren was born, she was “your text-book, easy, typical child,” said Wendy, “so, we had a lot to learn about having a newborn with Down syndrome.”
“The first and most important thing you will need to do, if your child is born with Down syndrome or special needs, is to get in contact with a program called Babies Can’t Wait,” Wendy explained. Babies Can’t Wait is Georgia’s interagency service for infants and toddlers with developmental delays or disabilities and their families, guaranteeing all eligible children, regardless of their disability, access to services that will enhance their development. “Babies Can’t Wait is early intervention from birth to 3 years old, and they provide awesome therapists and advice at no cost,” said Wendy. “The first three years are so important to your child’s future development, so parents should take advantage of any early intervention programs available. BCW will send someone to your home or daycare to determine the best possible program for your child.”
After the age of 3, children advance to the Steps Program, located at the 30th Avenue Preschool. Karen Wilson, Steps Program coordinator, explained: “We offer an array of services for 3- and 4-year-olds who need intervention, either for learning, for speech therapy, motor skills, socialization or adaptive behavior. We offer Steps classes at 30th Ave., as well as at five other schools. We work very closely with the child’s daycare or with their other pre-school, if they are in a lottery-based pre-school or a head-start program, because we want them to be with “typical” kids as much as possible.”
The Steps goal is to keep the children in the environment in which they feel most comfortable. An Individualized Education Program (IEP) is established before the child starts kindergarten since schools vary in the way in which they provide aid to children with Down syndrome and other special needs.
In addition to the services needed for your child’s development, another enormous consideration is healthcare. Children with Down syndrome require more doctor visits, tests and hospitalizations than “typical” children. When Lilly Miller was born, she qualified for a program called the Katie Beckett Waiver. This program is based on parental income and helps when parents make too much for Medicaid, but not enough to handle all of the inevitable expenses associated with Down syndrome. “Katie Beckett is a backdoor, so to speak, into regular Medicaid,” said Wendy.
When Lilly was born, a diagnosis of Down syndrome was an automatic “in” to the Katie Beckett program. Chris and Wendy decided to keep Lilly on the family insurance and they were accepted into a program called HIPP, which paid the insurance premiums. This saves the state money, because all of the medical bills were filed with their personal insurance first.
The Katie Beckett Waiver has since changed the criteria of acceptance, and only severe cases of Down syndrome are covered by the program. Because Lilly is not considered severe, the Millers lost their waiver and their HIPP eligibility went away, as well.
Down Syndrome Resources |
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Support group: BuddyWalk: Babies Can’tWait: Steps Program: Websites: |
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A final letter of denial from Katie Beckett will allow you access to funds from another Georgia program, Champions for Children. Champions for Children funds cover costs for a variety of services, up to $2,600 per year.
The Chattahoochee Valley Down Syndrome Support Group
provides support to families or others who have, as Debra
Bohannon explained, “some association with someone with
Down syndrome.” That support is given out in various forms
depending on what the need is. For instance, a new family may
just need a shoulder to lean on or someone to answer questions
they may have.
“We participate in fundraisers, such as the BuddyWalk, which helps raise awareness about Down syndrome,” Bohannon said. “We also help point families in the direction of various other agencies that may be of help to their family. A good example is the Emory Genetic Clinic in Atlanta. They follow children with a diagnosis of Down syndrome from birth to 5 years old. The doctor that handles Down syndrome is Dr. Jeannie Visoosak. She is able to assist the local doctors in making sure all recommended tests and such are taken care of, and she is wonderful!
“One of the main things that I would like to see the group do in the near future is to help pay for local doctors, therapists and special education teachers to receive of training to better educate themselves on Down syndrome.
“I often get asked if I would change the fact that Kai has Down syndrome if I could, and, I guess that is a million dollar question,” said Bohannon. “My response is just this: I truly believe this is just the path that God intended for our family. And, I must say that life is so much more complete with that path and all the people we’ve met while on it.”
The Times statistic and the choice to end the lives of their precious children was never a consideration for these families. And, in the end, their lives and the lives of everyone who has had the opportunity to meet these amazing children are better because of that choice.
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