My Son, The Artist
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My Son, The Artist

My Son, The Artist

Expectations for a child with Down Syndrome.

by Susie Feder

This article originally appeared on WholeFamily.com

My son is 15 years old. He was born with Down Syndrome. In the last 15 years I have amassed enough stories to fill volumes. However, right now I want to just stick to the topic of: Expectations.

When Joshua was born the doctors advised us to not "waste our time, energy or money." They claimed that our son would never amount to anything. They told us he would never walk, talk or toilet train. Lucky for us and for our son we were not about to accept that prognosis. However, we weren't really sure what to expect.

Therefore, we expected him to develop at his own pace, with a lot of help and stimulation, but to develop nonetheless. We decided that as long as we saw progress we could never give up.

There is never a dull moment when raising a child who is "different." The lows can be quite low, but the highs are really high. Our expectations must be realistic but what is realistic can differ greatly from one person to the next and even for the same individual at different times in his life.

If we did not have high hopes, the chances would be very slim for him to work to his potential.

Very early on we knew in our hearts that we had to have high expectations, but how high? We could not set goals for him (or for any other child, for that matter) that he could not ever possibly reach. However, if we did not have high hopes, the chances would be very slim for him to work to his potential.

I would like to illustrate this point with a story.

When Joshua was four-and-a-half years old he was mainstreamed into a "regular" preschool. His younger sister, C.J., was three and attended the same preschool in a younger class. The school ran an art contest and all the children submitted pictures. The pictures were hung on the wall and the president of the synagogue where the school was located, who was not personally familiar with the children, was the judge.

On the day of the contest I made an effort to see C.J.'s picture as it was being hung, but Joshua's class pictures were not yet up and I did not think twice about seeing his picture before leaving the building. You see, I had no expectation for Joshua to win; it was enough for me to know that he was able to draw a picture and have it displayed with those of the other children.

Joshua winning? I am ashamed to admit that I did not even consider the possibility.

Well, when I returned to pick up the kids you can imagine my surprise to discover that Joshua was the winner from his class! He was so proud and excited, he told everyone, "I won the contest! I made it! I made a tree!"

C.J. kept insisting that she won too and it was certainly a special feeling to know that Joshua had accomplished something that his sister could not.

After that I decided to keep my expectations high. It seems that most people work up to whatever expectations are set for them.

Why should Joshua be any different?

Copyright WholeFamily.com

Published: January 31, 2004


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Visitor Comments: 5

(5) Rhoda Schnarch, February 5, 2004 12:00 AM

I was very touched by your story. Interesting that your wonderful son drew
a picture of a tree. The holiday coming up this week is the holiday of
trees.
I do not know Hebew word or else I would tell you the Hebrew name of this
holiday. But the compaision to your son is great. From the roots to the
top where his spirituality is growing.
Hope to hear from you and the best of luck and nachos with your family.

(4) susan, February 3, 2004 12:00 AM

don't ever give up

My son is 13 years old. With high degree of problems. They told me he would never read well, but turns out they were wrong he reads over other children but does difficulty with comprehension. He was just put in a mainstream math class. the first quarter he recieved a d, this quarter he recieved a b. I believe the teachers some times have attitudes that they dont want to see the child fail, but theyhave to experience life. I am so proud of him. Also the hebrew school, thought he wouldnt be able to be bar mitzvahed because of his attention, he has been tutored last year and now is doing advanced prayers. And ready for the barmitvah. Dont ever listen to others saying he cant do it.

(3) Ruth Palatnik, February 3, 2004 12:00 AM

the sky is the limit-one day at a time

My daughter, Rina, age nine, is a lovely child of nine, and happens to have Down Syndrome.
At first, many parents of a new child who has Down Syndrome, is worried: "Will he marry? Read? Be independent? Can I handle this?"
Well, you will be surprised. Yes, it is not always easy. (I recently finished a battle of over a year to get my child included in a regular (religious) classroom in Israel.) But this child will, as he grows, develope their own personality-- with strengths of his own. Rina amazes me time after time with her insights and thoughts. And her determination.
The main thing is not to worry what will be- just to "get on the road" that takes you towards the goals you seek for your child.

(2) Anonymous, February 1, 2004 12:00 AM

Down Syndrome Adult

For over the past 5+ years,I have been a caretaker for a Gentile fellow in his 30's who has Down Syndrome. We are close friends. I took him to Orthodox shul once, and he was fascinated by the davening. I put a yarmulkah on him;and he began to rock back and forth, imitating the guys in the minyan, who treated him with great respect. I understand that such special people are reincarnations of highly evolved souls. Sunday, 02/01/04

(1) Richard Wenig, February 1, 2004 12:00 AM

Heros come in all shapes

Great story, not sure who is the hero, the mom or the son.

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