By Phyllis J. Lubin
Down Syndrome International has officially designated March 21 (3/21) to symbolize the triplication of the 21st chromosome. World Down Syndrome Day was first instituted in 2006 and has grown exponentially across the globe.
Trisomy 21 is due to an extra copy of chromosome number 21. Instead of having the normal two copies of chromosome number 21, the person with Down syndrome has three copies of that chromosome. I can’t say that I completely understand the actual scientific explanation of the condition, but I do understand that this is the condition that has contributed to Yussie’s special needs.
Yussie is physically different in many ways: the lack of a nose bridge; chubby hands with short fingers; short, stocky arms and legs—he will never grow to be tall in stature; and his eyes have a different shape than the rest of the people in our family. When you see our young man, the physical characteristics prompt everyone to suspect that something is unique about him.
There are also differences that you can’t see right off the bat. He has low muscle tone, which is hard one to believe when he feels much stronger than us much of the time! In fact Yosef was born with a heart defect (ventricular septal defect—VSD), which is common in people with Down syndrome. At the tender age of six months, Yussie underwent open-heart surgery to repair a small hole in his heart.
Children with Down syndrome may also have delayed mental and social development. Common problems include impulsive behaviors, poor judgment, short attention span, and slow learning. Upon interaction with Yussie, you can tell that he is different in those ways. He doesn’t seem like your average 12-year-old middle-school student. When a young child meets him and finds out his true age, they are baffled and think that they are being misled. He seems more like a typical child half his age.
Although many of these differences seem negative, Yussie has a light inside him that few people will ever experience in their lifetime. He seems to be perpetually happy (unless he isn’t). He loves hugs and smiles and inside jokes. He is a savant when it comes to random things, like memorizing lines to his favorite songs or remembering game show schedules for every night.
If you make a date with him to do anything at a specific time, he will not forget it. He loves to be on time, and will even tell on himself if it is past his bedtime.
March 21 has been set aside for National Down Syndrome Day. In fact, the Down Syndrome Advocacy Foundation (DSAF) has asked that everyone “Dress Down for Down Syndrome” on this special day for very special children. The DSAF is a not-for-profit organization founded by a group of individuals who have children or family members with Down syndrome, dedicated to ensuring that individuals with Down syndrome have equal access to schools, leisure activities, employment, and housing. If March 21 is not a convenient date, any day to dress down to raise awareness for Down syndrome would be greatly appreciated.
So as we scramble around preparing for this holiday of freedom, let’s lay back, dress down, and appreciate all that Hashem has given us! Chag kasher v’sameach! v
Phyllis Joy Lubin is an attorney with Maidenbaum & Sternberg, LLP, who resides in Cedarhurst with her husband, Leonard. They have six children: Naftali, Shoshana, Rivka, Rochel, Yosef, and Lea and now a daughter-in-law, Nina. The author welcomes your questions and comments at MothersMusings@gmail.com.