There are a lot of stories out there about kids with DS. They walk, they talk, they go to regular schools, they go to work. This one plays 3 instruments and that one is multi lingual. Another one knows all of TANACH. Success.
"You see", we are told, "they can accomplish so much."
Those who tell us these encouraging things have only the best intentions in kind. But, I have a niggling question in the back of my mind. What if he isn't one of these high functioning wonder DS kids? What if he doesn't learn to play three instruments? What if he can't be mainstreamed or hold down a regular job, or learn all of Tanach. It seems to me that all we are doing here is fooling ourselves into thinking that we are accepting our child's limitations. All we are really doing is downshifting our expectations. We are still judging our child by what he accomplishes, but now we are happier with a lower level of accomplishment.
Perhaps this is a step in the right direction, but ultimately I feel it is misguided. What if he doesn't do these things? Is his value as a human being defined by his accomplishments? Have I really learned anything from this nisayon if I measure him by what he does even if I use a different yardstick? What can we answer the secular doctor who wants to pull the plug on someone who can't DO anything? Why not terminate his life? If life, that is a soul which was sent to this world, has a value, it has to be regardless of the specific accomplishments of the body that is carrying that soul.
I spoke to the mother of a 5-year-old girl with DS. She is sweet. She does not speak more than a few words. She learned to walk at 3 1/2. This is not a wonder child. Yet, her mother told me that she dovens that her other children will some day reach the levels that this little girl has reached in gratitude, middos, ben Adam l'chavero.
What did you do to raise such a child, I asked.
Nothing, that is just her nature the mother replied.
But I beg to differ. The message this child received from her parents was that she was loved, not because of what she could do, but because she was their daughter - no strings attached.
What better way to raise a kind, loving, considerate, grateful, warm human being than to show her in every way that her mere existence is a cause of joy. What better way to encourage her to accomplish whatever she can than to show her that she is valued for her self, and her accomplishments are just something to make her life easier, more pleasant. We learn nothing by having been given our special children if we continue to value them for what they do, even if we think we are big tzadikkim for lowering our expectations to something reasonable for someone with a physical and or mental handicap.
Only when we come to value our children for their own sakes can we learn the lesson that they are sent here to teach us.
This article first appeared in issue #13 of Down Syndrome Amongst Us