One of the biggest challenges in my life is dealing with my brother, Shaya. Shaya is seven years old and has Down syndrome. Even though Shaya is the most lovable kid I know, he can pose many problems. The foremost problem for me is the stares and remarks he gets in the streets. The second problem is that when my friends find out that my brother has Down syndrome, they treat me with pity and feel sorry for me. Also, they are embarrassed to talk about this topic in front of me. The third problem is not as challenging as the first two, but, Shaya is sometimes frustrating to work with.
In spite of being in the uncomfortable position of being stared at, my family and I are never embarrassed to go places with Shaya. It's true that his eyes might be slanted upward and he might speak and act strangely at times, but is that a reason to stare?!? Don't people know that this young, innocent child is human? Once, I was waiting on line with Shaya for a ride. The little girl on line behind us could not stop staring at him. What was so strange about him that she was so fascinated? It hurt me so much; didn't she understand? Didn't she understand that he also had feelings?
Another incident once occurred that really disturbed me. Shaya and I were sitting peacefully in our car with the windows open. A woman who looked approximately fifty years old, noticed Shaya sitting innocently in the back seat. She promptly stuck her tongue out at him and began imitating him (remember-this behavior from a woman in her fifties). She then noticed me sitting in the front seat, so she said, “Oh, sorry honey!” and hastily hurried away. I was too appalled to react.
I've noticed that many times when someone sees a photo of Shaya or hears from somewhere that he has Down syndrome, they all of a sudden treat me with pity. Shaya is not someone to be pitied, nor does he evoke pity for others. He is someone to be treasured.
Once, a classmate of mine was assigned to do a project on Down syndrome. A few days before this girl was to present her project, a friend of hers said to me, “So-and-so is nervous about talking about Down syndrome in front of you.” Did she think I would be embarrassed? I should be embarrassed because my brother is one of Hashem's more unique creations?!? Also, once our eighth grade English teacher had a discussion with our class, saying that if she would give birth to a retarded child, she would give it up for adoption. My classmates were so grateful that I was absent that day! If I would have been in class I would not have minded the discussion; the only problem is that the teacher would never have heard the end of it from me!
This boy is one in a million! Not every girl is as lucky as me to have a brother so unique!
Hashem only gives tests to people who can pass them. Shaya is a test for my family. Shaya was placed in my family because Hashem knew that we could handle it. Hashem knew that when the doctors would tell my parents to place him in an institution, they would say, “NO!” Sometimes after telling Shaya not to do something ten times, he still might do it again. It can be frustrating to work with him, and after a while you feel like throwing up your hands and saying, “I give up!”. Sometimes I feel like all the times I've tried disciplining him have gone to waste. For example, Shaya has a habit of shaking various items like socks, shoelaces, suspenders, and the like. Many times I've taken away the object from him and scolded him for doing something we've told him so many times NOT to do. He might not shake anything for the rest of that day, but I guarantee you the next morning he'll be found on his bed waving a pair of socks before his eyes. Although this might be frustrating, my family and I love him so much that our love for him makes us more patient than annoyed, and we don't have the heart to yell.
This brother of mine is special, not deserving of stares! To me, Shaya is not disabled. To me, he is a precious, innocent soul not to be scarred by words and looks of others. Truthfully, who cares what they think? He is my brother, and I will love him forever and ever.
I know that the “staring” issue is very much on the front burner, especially with the teenage population. Look at it this way: Hashem created every normal individual with a sense of curiosity. In fact, as a sibling of a brother with Down syndrome you probably remember that when Shaya was getting his infant stimulation, you were very happy to see HIM developing that ‘chush'.
As the statistics tell us, Down syndrome occurs approximately 1 in 800 live births. That means that our DS children ARE somewhat unusual from the rest of the so-called “normal” population. Therefore, it is only natural for people to do a double and triple take when they meet an individual who is different.
I have always maintained that I derive tremendous ‘chizuk' from people's stares. I make sure that Moishey is impeccable at all times, his behavior is acceptable, and his manners are excellent. I actually enjoy taking him to the pizza shop. I observe the people who stare at him and watch as he loudly and clearly says a correct ‘bracha' on his pizza, eats it like a gentleman, makes use of his napkin, and is generally a ‘mentsch'. I love to see peoples' stares turn into smiles of approval. To me, that is the ultimate compliment and ‘chizuk'.
This article first appeared in issue #5 of Down Syndrome Amongst Us