‘On Being Tender’ by Margaret Lewis

"On Being Tender" was originally printed in October 1983 in the National Down Syndrome Congress' "Down Syndrome News" where Margaret Lewis was the editor. The NDSC reprinted the article in 2001, and received a great deal of response.

There is a dilemma, as an editor, in meeting the need of the public relations impact, of proving beyond the measure of a doubt that children and adults with Down syndrome have potential - that formerly inconceivable capacities are possible for people with Down syndrome. The dilemma is that, in striking out with our best foot forward, we sometimes run the risk of kicking, quite cruelly, some parent whose cherished child will never go to high school, never give a public talk, perhaps not even speak at all.

Continually we hear talk of stories of success, of tip-top achievements.

Often there is humor and gentle acceptance of imperfections, but in each of us as parents there seems to emerge that insidious seed of wanting to have, as someone put it, the "best child with Down syndrome." Having conquered (we like to believe) the grief of not having the typical child we expected, we still play for the winner's circle.

And it is good to have high expectations. Good to take joy in the little triumphs, good to show a doubting public that our kids too are wunderkinds. But where is the line, where is the edge of tenderness that keeps us aware of the hurt of others?

The great thing we as parents of children with Down syndrome share with one another is the vulnerability we each inherited when our particular child was born to us. The automatic humbling came to us every one, and out of it was created a kinship unlike any other but that pain can bring.

In the end, of course, it's a matter of individuality. The final joy is in the achievement, the communication - whatever level - of each child as himself or herself. The final proof of our humanity is in the non-comparing love we can show for our children and for each other.

But, if chance has dealt you a "high functioning" kid, take a few minutes and role-play the part of the parent of a child who doesn't read, or count, or jabber hundreds of words. How do you insulate yourself from the "what did I do wrong?" feelings, the "maybe if I try harder..." feelings, the just plain jealous, wounded feelings that surge up over the triumphs of another child-particularly one close to your own child's age - and then the guilt feelings of knowing you should be taking unalloyed pleasure in the achievements of someone else's little genius.

We need to interact with one another as parents and encourage one another with reasonable expectations. Let us be sure that we are not reduced to bragging at the expense of someone else's dignity and despair. Our advocacy is for every single child born with Down syndrome, not just the cream of the crop!

 Reprinted from "Down Syndrome News", newsletter of the National Down Syndrome Congress, Volume 24, Number 2 [2001].