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  • Jodi Samuels

Different: 2 Sides of the Coin

When Caila was younger, I always imagined that my saddest day would come when Caila would realize that she is different. At the time, I joked that she actually saw herself as superior to others - like her Down syndrome was her superpower.

As Caila matured, she has certainly become more aware of her challenges - especially that she is living in two worlds (Typical/ Special Needs) as a child in full inclusion. At age 10 she told me she did not want to attend activities for people with special needs, that she only wanted to be with “the real people”.

We have tried to give Caila experiences in both worlds. She attends a regular high school in a regular class. She goes to a youth group (Bnei Akiva) with typical peers, but after school her activities also include Knafayim Shel Krembo (Krembo Wings), an inclusive youth movement in Israel for children and youth with disabilities that provides weekly social activities for hundreds of youth with all types of mental or physical disabilities together with their neuro-typical peers. She also participates in Friendship Circle where individuals with unique abilities and their families, teen volunteers, supporters and staff link together to form a continuous circle of friendship.

I watch Caila struggle with where she fits in. Last year she told me, “Imma (Mom), I don’t want to have Down syndrome anymore - it’s just too hard”. Sometimes when we discuss something about Down syndrome, she says, “Stop I don’t want to hear. I don’t care if everyone is different, I just don’t want to have Down syndrome anymore!” What can I say? I don’t think most teen girls can see their imperfections and challenges and rationalize the good in the situation.

In spite of her struggles and awareness, I watch her navigate her world. She enthusiastically goes to school and her after school activities. It’s hard - very hard. She often just observes rather than participates. She so badly wants to be part of it all, but often becomes the wallflower. I think back to my own teen years, when I was so painfully shy. I would never have had Caila’s resilience to navigate her overwhelming social realities. I would rather have hidden away than actively seek out opportunities like she does.

I was recently at a conference and networking event and found myself feeling very overwhelmed. I used the pretext of urgent work so I could be in the corner on my phone. In that moment I imagined that this must be how Caila feels every time she participates in a world that moves faster than her, a world with subtleties she cannot fathom and a social hierarchy that she does not know how to navigate. My heart breaks for her, but at the same time, I also want to burst with pride!

I realize her incredible accomplishments. We were told when Caila was in third grade that it was time to give up on mathematics. I don’t give up easily, and we persevered. Caila is now slowly but surely keeping up with 7th grade math! She does not learn at the pace of her class, but with much patience and extra effort, she stuns us every day with her ability to keep learning and break barriers. How many kids enthusiastically wake up at 6.15am each day to do math with their dad? Caila does not shy away from the difficult things.

Caila is defined by her tenaciousness and hardworking attitude. She has incredible resilience and a positive disposition. I truly feel that Caila defines herself by the mantra “Impossible just takes a little longer.”


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