By Nancy Hennefer, Cherry Hill, NJ
In Forrest Gump, a popular 1994 comedy-drama, Forrest says, “Momma says life is like a box of chocolates, you never know what you’re gonna get.” In many respects, that is very true of raising a child who has Down syndrome or any disABILITY for that matter. When our son, Brad, was born 20 years ago, we never envisioned his incredible accomplishments or the life that he now leads.
To our knowledge, Brad is the first individual with DS to play two varsity sports through all four years of high school. Brad earned four varsity letters playing golf at Cherry Hill High School East in New Jersey. He also played on the basketball team all four years and earned a varsity letter in his senior year. Over time, Brad acquired quite a following and attracted media attention with features on Good Morning America, ABC, CBS, NBC and Comcast; and in Sports Illustrated and The New York Times. “Google” his name or see video clips on his website at www.golfforlife.org.
Brad has always loved sports. We have pictures of him swinging a golf club at age three and joke now that we stood back pretty far as he swung his new weapon. For Brad, standing back and giving him that opportunity has made all the difference in his life.
We often get asked what we did “different” with Brad. I don’t profess to have all of the answers and no one size fits all, but Brad has had a lot of “behind the scenes” preparation. I can share my ideas of what has worked for Brad. While they may not work for everyone, I hope other families will find them beneficial.
Top Ten Tips for Successful Inclusion in Athletics
1) Abandon all preconceived stereotypes. Focus on the ABILITY portion of your child’s disABILITY.
2) Think of sports as “physical therapy.” The added bonus of positive peer mentors makes it fun! We always looked for opportunities for physical development alongside typical peers.
3) Start young while in preschool and kindergarten. Brad learned basic, socially appropriate playground rules with his typically developing peers — take turns, line up, wait your turn, etc. Brad learned quickly that if he didn’t behave and follow the rules, other children avoided him and he was not included in recess activities. His playground peers were some of his best teachers. When it came to behavior, our rule of thumb was that if we observed behaviors that we did not want to see as a teenager or adult, we did not permit those behaviors as a young child.
4) Work collaboratively with your school district. We have always worked collaboratively with our school district, picked our battles carefully, and never let the relationship turn adversarial. While we realize everyone’s circumstances are different, we do believe that our strong relationship with the school administration had a positive influence on Brad’s ultimate success in high school. We always viewed Brad’s progress as a 21- year journey in our district. We tried to view some of the daily challenges within that context.
5) Take advantage of community recreation programs. We enrolled Brad in our township’s summer community recreation programs with typical peers. We did not always feel the need to tell them in advance that he had DS. Instead, we volunteered to help out once he was enrolled.
6) Participate in Special Olympics. If there are no appropriate Special Olympics training programs in your area, then start your own. We started Special Olympics programs as an “Independent” in golf, basketball and power lifting. The programs are now funded through our local NDSC affiliate parent group.
7) Participate in elementary and middle school athletics. Brad has always participated in regular physical education classes to the best of his ability. This was supplemented with physical therapy.
Being part of a team is more important than playing time. As Brad got older, we wanted him to continue experiencing the joy of being part of a team. We did not set out for him to actually play at the high school level. We first approached the school about Brad being a manager and participating in practices for physical therapy and social interaction. Participation at any level is beneficial. Playing time may be an added benefit, but it was not our initial expectation.
9) Be prepared to devote your personal time to high school athletics.
In four years, our family did not miss one practice or game.
Basketball games and practices were six days a week for two or three hours each. Since we were pioneers in uncharted territory, we wanted to be there to make sure Brad was successful. We did not demand or expect an aide to be assigned. If Brad needed additional assistance, we did not want the coaches to take time away from his teammates. For basketball, the school obtained a waiver adding a spot to the team roster so that Brad did not take one away from a deserving teammate.
10) Think of physical fitness and weight management as life skills. In high school, Brad took a physical education class that focused on weight training. He worked in the weight room five days per week with the other athletes. As a family, we routinely go to the gym, where Brad independently performs his own exercise routine. It has become one of his life skills.
Just remember, wherever you happen to be on this journey that we all share with our family member who has DS, “you never know what you’re gonna get.” What we “got” was slowly revealed to us over a 20-year journey. I’m sure the best is yet to come.