• Jodi Samuels

What Is Down Syndrome?



We are away at the moment with good friends. We have kids of the same ages and they spend hours playing with each other as they have for many years. There is a Youtube video circulating about an adorable Labrador playing with a child with Down syndrome.


The kids were watching the clip and our friends’ 6 year old asked, “What is Down syndrome?”. Temira my eight year old promptly answered in a spontaneous and matter-of-fact way, “It’s like Caily – someone who learns a little slower and sometimes needs extra help and therapists to catch up and learn better” We were stunned. Good answer Temira! The only points I could have added are (1) to remember that Down syndrome are much more similar to regularly developing children than they are different and (2) spoken about the joy she brings to our world and how much work goes into parenting her and fighting for her to be included at all levels of society.


We are all looking for success, happiness and fulfillment of our potential in life. Having a special needs child gives one pause to think about what this all means.I recently caught up with a friend from university. This person was voted most likely to make it to front page of Fortune. He had so much potential and today he is Mr. Joe Average working on a job in a middle management position of a large multinational company. He is bored and unfulfilled in this career but lacks the energy and confidence to try to change his career. What is success?


One of our JICNY members is going through a very tough time at the moment. Beautiful, polished, vivacious and completely embroiled in controversy, life in a big downward spiral. What is happiness?


I was thinking about someone I know from my childhood. The most shy, quietest kid in class, someone never tapped as a leader. Yet this person is changing the world every day. What is a leader?


The label of Down syndrome will always be used to define Caily. Jewish Day schools would not asses her or meet her. Therapists and educators see mental retardation before they even meet her and are so surprised to hear she has normal IQ and excellent functioning. She will always be stereo typed.


Perhaps we should use Temira’s simple answer. So many people need therapists, marriage counselors, career coaches, dietitians. So many people need extra help.


Life is tough with a never ending series of challenges. Life is also beautiful, exciting and wonderful. The trick is to find a way to use the gifts we were given to reach our maximum potential and enjoy a fulfilled life to the very best of the abilities we were given. That is the most any of us can ask for.


Originally published: December 27, 2012

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