Blog Standing Up For What’s Right
We will do anything for our kids.
We will wake through the night.
We will nurse them to health.
We will do homework to all hours of the morning.
We will wait up until we hear the door open.
We will also defend our children under attack…
As a mom of a special needs kid, we also become CEO’s of our kid’s intervention teams.
We become chief worrying officer.
We become familiar with hundreds of acronyms like cpse, ei, pt, ot,si, st.
We also sometimes have to defend our kid’s right to existence…
Our beautiful princess was just four days old and my husband was holding her when a “friend” came to visit and said, ” I don’t understand how could you have not done an amnio and aborted.”
That was our wake up call – welcome to reality. When we applied for a spot in a two-year-old class in a private Jewish day school where her siblings attend, we were told NO. 12 kids, three teachers, and we offered the school a full-time shadow and told them we would cover all expenses not provided by the city. We soon learned about more realities – the lack of dignity for special needs families, the fact that people in power could threaten us, the fact that very few people truly cared. Everyone says “bad bad, sad, sad.” Very few people will leave their comfort zone and take a stand for what’s right.
We soon learned our story was not ours alone. The harsh reality is we live in the wealthiest Jewish community in the world in one of the largest communities and our special needs children have no access to an Orthodox, Jewish education. No inclusion programs in synagogues, no physical access to many synagogues and schools. No empathy from the community at large.
My husband and I soon realized if we wanted the world to change it would have to be us who fight for the change. If we wanted real change, this needs to be a community issue, something on the community agenda. We embarked on a campaign of advocacy and education. We created a fan page, www.facebook.com/cailysworld. We speak at events, we meet with all the organizations in the special needs area to determine how we can effect change. Community forums educate, they create discussion, increase communal pressure…they attract media and they force this issue onto the community agenda. We have a vision of a series of forums. Our first one was titled “What is the Jewish community’s responsibility to special needs children?” At our next forum, on Sunday, January 9th, at 7.30 pm Accepting the challenge: Towards a fully inclusive Jewish Community
We plan to build a series with communal support. We insist that we will be heard and have a rightful place in a community that is charged with the role of being a light unto the nations.
As Martin Luther King so aptly said, “We begin to die when we are silent about the things that matter.”
Originally published: January 7, 2011