Sunday, March 8, 2009


“Willie” wasn’t his real name. His parents are not internet users, and probably wouldn’t want me to post about him. But I will use a completely different name to give him anonymity.
A few days ago I was busy calling several mothers of young adults with Down syndrome, to see if they were still interested in being notified about group meetings in our town, or only special events pertaining to young adults, or even not at all.
When I reached Willie’s mom she paused.
“Did you hear about Willie?”
“Willie died about two months ago….”

Now I’ve known Willie’s mom for about eleven years. Willie was a youngster of about eleven at the time. She complained to me how he was not progressing at all in his special-ed school, one specifically for low-functioning children.
As the years passed, his mother put pressure on his school. Eventually he was reevaluated and they finally admitted that in addition to having Down syndrome, he had autism. He was not as severely retarded as they had thought, but they had not been approaching him in the correct way. For years the school had been working with him in the way one works with a child with just DS, not taking into account his additional diagnosis.
Unfortunately many years had been lost, because no one had asked “Why is this not working? What needs to be done differently? What are we overlooking?” The school finally started working with him in a more appropriate way, and some progress was seen.
And I always admired Willie’s mom for her perseverance, her belief in her son, and her ability to see beyond her son’s severe behavior problems to the soul within.

“You know, I miss him. We were very close….”

I have no doubt of that. But I think of all the children with Down syndrome who never get the chance to be what they can be, whether it is due to poverty, ignorance, prejudice, and it makes me sad. In twenty years who will remember Willie? Will anyone besides his mother shed a tear over what could have been?


TUC said...

I got a chill reading this post. My heart goes out to that mom for her loss. Thank you for caring enough about Willie to share a little bit of him with us.

Anonymous said...

I agree. If we don't pressure/push/encourage etc our children to do, to be the most they can-- then they atrophy... and their growth and development can be seriously stunted, beyond what their disabilities may have impacted...
It's "easier" to go with the flow, let him be "happy," let him "be"-- but life isn't about sitting back on laurels and tanning in the sun. Of course e/o has to find the happy medium of encouraging, pushing-- and accepting and saying, I see that there may be some limitations. But I don't want to be the one to impose those limitations...

Batya said...

How sad.
Many kids with all sorts of disabilities serious, mild etc suffer, because in incorrect or no assessment at all. We parents have to be advocates for our kids.