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Monday, 05 March 2012

Part III: Still More on Expectations…

Written by  Susie Feder

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As a young mother of a child with "different abilities," I had my moments!! Moments of excitement and pride at the accomplishment of my first born, and moments of distress and sadness and even some jealousy when seeing what other children were doing that I wasn't sure my son would do.

Bar Mitzvahs, for example.  Many of our nephews and friends’ children were getting to that age, and as each one reached the age of Mitzvot (observing the commandments), I had to gather up my strength to show my happiness and joy and share in the joy of our siblings and friends as their sons read from the Torah, led the congregation in prayers and made beautiful speeches.  They were all very impressive and I really was proud of them and happy for their parents, but somewhere inside there was a pain and tears would come to my eyes.

As our son grew, so did his desire to be more like other children and to do what they were doing, but all the while, he showed a sense of happiness and contentment with his life and even felt himself that he was special, because, as he put it: “G-d made me special”.

We mainstreamed him in “regular” school, not without much difficulty, and he began to prove to teachers and students alike that he was someone worth knowing and learning from.  He didn’t give up, he worked hard.  He said good morning to everyone and even when he got no response, he persisted; he taught other children how to be accepting!

A couple of years before his thirteenth birthday, we began planning for his Bar Mitzvah.  We knew that we would throw him a beautiful party and he would be thrilled to have a band, and everyone would dance. We asked our rabbi if he could lead the prayers for the congregation and were told that since he clearly understood about mitzvoth, he could lead the prayer service.  My husband taught him to pray the service welcoming the Sabbath on Friday nights, and worked with him tirelessly on the blessings for the Torah so that he could have an aliyah (be called up to recite the blessing on the Torah)!  Josh wanted more and so my husband asked our friend, a very good Baal Koreh (singer of the Torah portion) to make him a tape of the Maftir (the last chapter in the weekly portion).  Joshua learned it and knows it by heart to this day.  But, that still wasn’t enough and Joshua wanted to also say the Haftarah. (An additional chapter read from the books of the Prophets.)

My husband made him a tape for that as well and Joshua studied and studied.

There were moments that I thought maybe he would mess up, but I put those thoughts aside and decided that whatever he can do he will do and we will be proud.  His teacher helped him with a speech about his Parsha (Torah portion) and another friend would practice that with him too.

A couple months before his Bar Mitzvah, I went to a Bar Mitzvah in Seattle.  It was beautiful and lots of fun.  They had a Melaveh Malka (celebration taking place after the close of the Sabbath on Saturday night) and when the Bar Mitzvah boy got up to speak, he was suddenly struck with the giggles.  He could barely go on.  I thought, oh how mortifying for him!  But no, he recovered and everything was ok.  You see he was just a kid, it was important to let him be a kid and if the pressure was a bit much, better to relieve the pressure and rejoice in his accomplishments without judgment.

The Bar Mitzvah and the party were a success.

I had learned a valuable lesson.  I knew for sure that whatever my son did at his Bar Mitzvah it would be ok!

The special time arrived! The family gathered and all of our friends were excited to be part of the big event.  It was an amazing weekend!  Joshua exceeded all expectations.  He did all that he set out to do with grace and pride.

The following week an article appeared on the front page of the Jewish newspaper entitled: Excellent. Period.

The article went on to describe all that Joshua did, perfectly, no mistakes -- he did not just do well for a child with Down Syndrome, he did well by all standards.

The editor called the event an “Up Syndrome Bar Mitzvah.”  “The congregation was amazed,” the editor wrote. “The congregation was moved. The davening (prayer) reached a level I never remember in this shul (synagogue). This was an unforgettable moment of spiritual elation and unity,” he wrote. “This was a triumph of the human spirit…sets a standard of excellence — and of hope”.

Can every boy with Down Syndrome do what our son did?  No. Can every ordinary Bar Mitzvah boy do what he did? Probably not. But can EVERYONE strive and achieve in general? Definitely!  Again, expectations play a part.

As parents we must recognize our children’s strengths and help them reach goals that are appropriate for them.  Everyone has special gifts; we have to know how to unwrap them and appreciate them for what they are.  We have to give children a chance to shine.

All of our children: for all of G-d’s children are special!

Susie Feder is a nurse midwife at Sha'arei Zedek Hospital, Jerusalem.





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Susie Feder

Susie Feder is a nurse midwife at Sha'arei Zedek Hospital in Jerusalem.

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