We all want our children to reach for the stars. But should these expectations change when we have a child who is born with special needs or disabilities?
This was something I had to grapple with as my world came crashing down around me in February 2008. A pediatrician strode into my hospital room and asked me the five words that changed my life, “Did you do genetic testing?”
With his question he revealed his suspicion, and later testing confirmed the somber truth: Caila, our third child, was born with Down syndrome.
Those first few minutes were a struggle as my natural parental expectations for my child were on the verge of being shattered. Thankfully, before I careened too far into the abyss of despair, I got hold of myself. I remember looking in the mirror and facing the truth. We as a family had always accepted anyone into our homes. We had an open door, literally, at our Manhattan apartment, and we welcomed to our Shabbat table guests from all walks of life and religion.
If I could not accept my own daughter, who came with her own set of challenges, my life would be a lie.
From this decision, which my husband, Gavin, had also come to on his own, we took another significant step forward. As we were leaving the hospital and the guard snipped off our security bracelets, Gavin said to me, “They might as well have branded us activists.”
We headed out the door determined that we would set the narrative for our daughter. We did not want people feeling sorry for us. I was never a victim in other situations, so why would I be with my child? We would be proactive and we would advocate for her inclusion in all aspects of society.
And we decided something else: Our expectations for Caila would be just as high as they were for our other two children, but according to her ability. We made a point of treating Caila exactly the same by giving her responsibilities that she can handle and pushing her to be the best person that she can be and to reach her potential.
But we soon found out the hard way that not everyone shared our strong beliefs in inclusion. When Caila was two years old, we were categorically barred from even applying to a modern Orthodox day school, the very school our two older children attended. The school gave a litany of reasons they could not take Caila and refused to give her a chance.
I am not one to take “no” for an answer very easily. We met with the board, we pleaded with the head rabbi. Finally, having received only negative responses, we consulted several rabbis to make sure we were on the right path regarding inclusion. Maybe we were wrong to fight this. We wanted to know what the Torah says about inclusion of children with special needs.
The Torah, it turns out, is clear regarding inclusion. On Shavuot we read how all of Israel stood together at Mount Sinai “like one man with one heart.” No one was excluded. There was no special section for those with disabilities at Mount Sinai.
Every single rabbi we spoke with, except for one, agreed that Caila is entitled to a full Jewish education at a regular school. This lifted my spirit and encouraged me in our fight for inclusion.
In fact, the rabbis we spoke with told us that we could — and should — make this issue public. This was not just about our daughter, but about a general acceptance of others in the special–needs community. I sent a public letter to the head rabbi of the school — and I cc’d the entire school mailing list so the parents would be aware of what was going on. I also posted this letter on Facebook. We also started a series of public forums on inclusion in religious communities.
Our story made the papers. We made waves in the local community. The Catholic Archdiocese of New York even called and offered Caila a spot at any of their schools.
While we made headlines, Caila still did not get into the school. It was a heart-wrenching experience and it tested our resolve and commitment to inclusion. We lost friends and my not-for-profit outreach lost donors as the entire island of Manhattan took sides in this battle.
The struggle for inclusion in society is bold, and it is righteous. But it is also hard.
Despite that losing battle, we continued to take a proactive approach, educating people in our community about why inclusion was the right path. Up until we went public with our fight, even our closest friends failed to understand the challenges we faced as a family who has a child with special needs. Our honesty and transparency about our own troubles helped engender understanding among others — not just for our situation but for others as well.
Meanwhile, the Chabad Early Learning Center near our apartment met with us and accepted Caila with open arms. “Every Jewish child has the right to a Jewish education,” the principal told us. We wholeheartedly agreed.
Inclusion may be hard, but it is the right thing to do. This became our mantra.
The following year, another school, which had heard of our troubles, contacted us to extend Caila an invitation to apply to that their kindergarten program. Caila attended that school until we made aliyah two years later.
We pressed on with inclusion in Israel. In Israel, we found, inclusion is fully backed by the law, but for various reasons we still had trouble finding a suitable grammar school. Many schools claimed they didn’t have the resources. Though we had heard that excuse before, in Israel it is the truth. The bottom fell out of our amazing support system that New York State had provided. Suddenly, inclusion was all on the parents’ shoulders. Not only were we ill-equipped to manage our daughter’s education, we couldn’t speak Hebrew.
What is different in Israel, however, is the hundreds of organizations that offer assistance in integrating children with special needs. With the help of several organizations and the valuable advice of parents who have pioneered inclusion in Israel, we managed to navigate the system and, to this day, Caila is fully included in a regular school.
Our journey has not been without struggles. The challenges are immense, but the rewards make it worthwhile. Inclusion is a win-win for everyone. My child benefits from a normative environment, but her presence in the classroom is beneficial for the other children. Making inclusion the norm now is crucial lesson that will enable future generations to learn to accept the “other.”
I see it playing out in my own family: My older children have wholeheartedly accepted their sister and, in the process, they learned teamwork, empathy, and sincerity among so many other important character traits.
And the main lesson we have all taken from the challenges we have faced along the way is that life doesn’t have to be perfect to be wonderful.