I recently had the pleasure of attending a support group for parents with Down syndrome children. It was one of the most informative and delightful mornings I have had.
Gwinnett County Public School's parent mentor, Jackie McNair was the speaker. Georgia Parent Mentor Partnership (GaPMP) are parents of special needs children who have been hired by local school systems to work with special education directors, parents, school teams, teachers and the community.
On the day that Jackie McNair attended, Lisa and Russell Brown and their children Brody and Piper welcomed the support group into their home. There was even a play area set up for all the children that came with parents. Russell’s mother June and a couple of dad’s took charge and the kids had a wonderful time. Two-year-old Brody was the perfect host to his guests.
Why Support Groups?
A support group offers many services to parents with a special needs child. Each family is unique. Each child has problems/difficulties unique to his/her circumstances, but they all share the need for knowledge, direction and compassion. Support groups offer a listening ear, provide information on various subjects and let families know that they are not alone. It is a safe place to share horror stories, vent your frustrations and educate others on how to proceed.
Groups such this one are much more comforting and rewarding than locking yourself in the bathroom and screaming for an hour. However, there are days that screaming into a pillow really does help. I recommend hiding a bunch of Hershey Bars for nourishment. I suggest the kind with almonds so that you are eating a “vegetable” and replacing the magnesium your system.
You must always have a healthy component to whatever you do. (Hint: Pull the tissues out of a box of Kleenex and put them in there. Force the Kleenex back into the top of the box. The kids are less likely to find them. And, you are going to be using the tissues anyhow.)
One of the mothers at the meeting said that "parents feel so alone." It's true, however, that you do gain strength from others. It is encouraging to see someone survive the terrible twos and come out OK. One needs to learn that your greatest support and key to knowledge is the ability to ask for help.
The day's guest speaker, Jackie McNair, gave valuable information on the evaluation process for services and what to expect from educational teams meetings.
Getting Out the Word
Through various organizations, such as public schools and Babies Can’t Wait, children’s needs are evaluated. Services, such as speech, vision and motor skills therapies are available. Without a proper assessment, children will not be offered these services. An Individual Educational Plan (IEP) is designed to offer the appropriate services.
The Down Syndrome Association of Atlanta (DSAA) is working diligently to make the public more aware of Down syndrome. Jennifer Shersan, a mother of 14-month-old Joey and two other children, is a member of the board of directors. She is the chairwoman of the awareness committee at the association. Among many activities to increase awareness, DSAA has creative note cards from children’s art. These will be available for purchase soon.
Another awareness effort is the organization's Buddy Walk, which began in October 1995 to celebrate the time as Down Syndrome Awareness Month. Again, it is hoped this will promote awareness and educate the public of Down syndrome. The walk was held this year on October 9.
The Road Ahead
Back to Jackie McNair and the support group. As the guest speaker, Ms. McNair provided samples of questions that parents need to ask and important words to know. And, by the way, no question is too dumb. We are talking about the quality of life for your child. Teachers know you don’t have all the answers, and you are scared about the future. Let them help you find some answers and direction.
One of the most important aspects of this meetings was stressing that each child is precious to his or her parent. One of the statistics mentioned was that 90 percent of the women who discover they are carrying a baby with Down syndrome will abort the child. Those parents who choose to keep the child should be heralded.
They know the road ahead of them is going to be difficult. They know there are going to be days when all they want to do is lock themselves in the bathroom and scream. But, they also know there will be rewards that will be indescribable, joys unimaginable and love unconditional.
Editor's note: Marlene Buchanan, a retired educator and long-time Snellville-area resident, brings Patch readers community news and happenings in the Snellville area. This column appears twice a month on Tuesdays. You can read her column in the Snellville Patch.