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Being happy does not mean everything is perfect

We have been in Israel for five weeks. Caily has been attending the Feuerstein Institute - The Center for Enhanced Learning Potential, started by Prof. Reuven Feuerstein, a visionary nonagenarian who in the 1940’s came up with the fundamental principle of cognitive modifiability. A person’s cognitive ability is not fixed but can change over time with the right stimuli and intervention. At the institute one sees a constant flow of disabled kids many with severe conditions.

I have learned three things sitting in the lobby waiting for Caily during her sessions:
1. You have to see the positive in your situation - it helps you to frame your challenges
2. Parents need hope - they need to believe and know that their kids will make progress
3. Parents love their kids no matter what their challenges – it’s beautiful to see so much unconditional parental love in action even in the presence of severely disabled, non-communicative children

In NY in her inclusion classroom and as part of the community Caila is just a child who happens to have Down syndrome. At Feuerstein when I am sitting amongst the disabled kids I have to face the fact that, although unusually high functioning, she is also a disabled child and I find it hard. The reality hits me and all the questions about the future come to me. Yes she is high functioning but I sometimes wonder if the expectations that we have on her are not too much, not necessarily now but down the line. After all I have her included in one of the top Jewish Day schools with the top 5 percent of kids in her age group. Those that have been given every form of stimulation, intervention and the best education money can buy. Questions about marriage and relationships surface. I know she is only 5 but we live in a world where we bless the children at birth that they will merit to come to the chuppah. I know how hard the 1st wedding I attended was after Caily was born. Marriage and financial success are the sub text of our culture.

Just as I was pondering all this with another moms whose amazing daughter is about to be engaged to young man with Down syndrome I got this Facebook post sent to me. Its of course stirred emotions and raised questions of practicality, ethics and rights of all parties. See the picture below.

At the end of the day, Caily is full of charm and joy. Every challenge that has been thrown her way, she has embraced with a poise, grace and determination that is truly inspiring. Yes, there are many challenges ahead but I have to learn to take on each one as it presents itself and not worry about the total of all possible challenges all at the same time. Caily can teach us all the important lesson of how to always be happy. I need to learn how to take things one day at a time.

Views: 916

Tags: Caila, Down, inclusion, marriage, needs, special, sydrome

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Comment by Evelyn on July 26, 2013 at 1:44pm

We parents can drive ourselves crazy thinking about the future...what if this, what if that, how will she ever...When I catch myself on this path, I just take a deep breath and move back into NOW.

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