Including Caily – A Reflection
The short answer? I believe that God wants every person to be in this world. The Torah teaches us that people with special needs can not only be included, but have important roles in society. In fact, some of our great biblical leaders had challenges: Moses had a stutter and Isaac was blind, just to name a couple.
The longer answer? Our world is ever-changing. We now have a black President of the United States; women have equal rights in Western countries; the LGBT community is achieving unprecedented success in living as fully integrated individuals. It seems only fitting that people with special needs be included in society at large.
My family’s greatest challenge is in getting people to judge our daughter, Caily, by her abilities and not by her diagnosis. Even professionals hear “Down Syndrome” and have a knee-jerk reaction that Caily is severely cognitively impaired, despite the fact that her scores consistently show her IQ in the normal range. I recall a time when a therapist heard Caily singing all of the words to different Chanukah songs. Although this therapist had been working with Caily for 5 months, she was surprised that Caily knew the songs. Caily’s only limitation was the therapist’s low expectations.
Other parents, too, must be educated about each child with disabilities and be guided to learn what to say to their own kids. In our family, our position has always been to encourage others to say nothing and to avoid labeling Caily. I have learned that people follow our lead in how to behave and interact with Caily. We treat Caily as our princess and our gift; and as a result, we have changed a whole community’s knee-jerk reaction when they hear “Down Syndrome”.
Despite all of this, there have been many times when I wonder if inclusion is the right choice. I believe in inclusion, but I also know that it is not the best option for all children in all circumstances. The day I see that Caily is struggling emotionally, for example, is the day I will reconsider inclusion for Caily. For now, though, I know that she is in the right place and I believe that even more people can be successfully included in their schools and communities.
As Caily’s parent, I know I have a responsibility to defend her right to be included. It is not easy, but it is the right thing to do. I realized early on that even when Caily is in an inclusive school environment, I have to fight battles and overcome challenges. Too often, children with special needs are excluded because organizations are afraid of including them. Parents of these children find themselves in the position to not only advocate for their own child, but to educate others about the value of inclusion. Personally, I use my metroimma.com blog and facebook.com/cailysworld to create awareness. I speak to parent groups, university students, high school kids, Rabbinical students and even medical students. Inclusion is hard work. It sometimes seems like it would be easier to put my child in a safe, separate special needs environment. But for Caily and our family, the huge amount of effort that inclusion requires truly pays off.
We are so fortunate to live in a time when there are abundant resources for parents who are looking to include their children. I have learned more from other parents than from anyone else. There are many parent support groups and an amazing amount of meaningful information online. I suggest following parents with inspirational blogs as a source of hope and possibility. There are so many amazing success stories out there. Most importantly, you must believe that your child is capable of growth and change.
Reuven Feurstein published what I consider to be a “must read” book: “Don’t Accept Me as I am: Helping “Retarded” People to Excel“. His approach is about active acceptance, loving your childno matter what and believing that they can change. This philosophy has helped us treat Caily as someone with true potential. We have never treated her differently from our other kids. We have never made excuses for her and we have always had typical expectations of her. Caily is just a child who happens to have some challenges.
My new favorite saying is, “Life does not have to be perfect to be good.” Perfection is appreciating the good in every situation. Caily has certainly taught me that. I believe she teaches her therapists, teachers and peers this same message every day. Inclusion is just as much a gift for them as it is for Caily.
Jodi Samuels has over 20 years of business management and startup experience. She is known as a community organizer and a special needs activist and she has worked in the not-for-profit, finance, fashion and beauty sectors. Jodi successfully started two non-profit Jewish organizations including the Jewish International Connection NY that currently boasts 10,000 members from 40 countries. Four years ago Jodi launched jmedia connections and she has successfully built jdeal – a Jewish daily deal site, Buy Israel Week – an initiative to combat the BDS movement, and jblasts – an email blast network with extensive reach into the US Jewish market. She is the co-founder of Metroimma, an online site for Jewish moms, with over 6000 active monthly members and a large following of her blog. Her latest initiative is jgives.com – a destination site to give charity. Her expertise in strategic and relationship online marketing has given her the foundation to acquire and retain a strong membership base for her businesses. She is an active member of the Council of Young Jewish Presidents. In addition to an MBA, Jodi holds a Bachelors degree in Psychology from the University of South Africa.