Hello, my name is Caila Samuels but I like to be called Caily. I'm two years old and I have Down syndrome. Everyone tells me that I'm doing really well -- I walk and feed myself and play all the same games as my other two-year-old friends at playgroup. I'm very friendly, full of smiles and sociable, I’m assertive, interactive and intensely curious. Some things are difficult for me to learn but I work really hard and never give up. I have a wonderful family and excellent therapists that help me. I may not be designer perfect but my Imma told me that life doesn’t have to be perfect to be wonderful.
My dream is to attend a Jewish Day School in Manhattan -- it’s the same school that my brother, Meron, and sister, Temira, go to. They are my favorite people in the whole world. Abba and Imma have been trying to get me into the school for five months but the professional and lay leaders of the school just keep saying “No.” I don’t understand why, especially since they haven’t even met me or spoken to me.
How can I show the teachers what I can do if they won’t even meet me?
All the other two-year-olds who have applied to the Toddler program at the school get to meet the teachers and be assessed by them. But they told me I couldn’t come for an assessment. In fact when Abba and Imma asked, they were specifically told not to bring me. Randi, my special instruction teacher, says that I can do just about anything that any other child my age can do -- in some things even more than them. How can I show the teachers what I can do if they won’t even meet me? Don’t I deserve a chance as much as any other Jewish child?
I have a friend named Avi who is three years old and has Down syndrome too. He goes to a regular Yeshiva in New Jersey and he is doing really well. The school was anxious about including Avi -- they had never done this before. The Principal and the teachers now love him so much and tell his Abba every week that they are amazed by what he is capable of and get so much out of having him in the class.
The majority of children with Down syndrome attend regular school. In the US, Israel, UK, South Africa, Australia and many other countries, laws have been passed which make sure that children like me can go to regular schools. They call it LRE – “Least Restrictive Environment” which means special needs children should be allowed to attend school programs that are as close as possible to the other kids. If the authorities in all these counties concluded that inclusion is best for special children like me, why does the school I want to go to think differently than all these people in so many countries? How can they all be wrong and that school be right?
I know of special children who go to Jewish Day Schools all over – Brooklyn, Riverdale, Long Island, Boston, New Jersey, Miami, Montreal, Los Angeles, Jerusalem – everywhere except Manhattan. Why?
Abba and Imma keep asking the school this question – why? They were told that the answer is “No” and nothing that they say or do would make them change their mind or budge one inch. Then the school said that they would not give any reason because my Abba and Imma would not be satisfied with any reason that they gave.
Finally some answers began to surface:
- “We’re not in that business.” What business is that? I thought a Jewish Day School was in the business of Jewish education. We have an obligation to give every child a Jewish education. And what about the Special Needs Fund that everyone contributes to – what business is that?
- “There is no room for shadows in the classrooms.” I know that can’t be right because both my brother and sister have had kids with shadows in their classroom.
- “The school cannot afford to have a Down syndrome child in the school.” What is there to afford? The New York City Board of Education will send a special teacher to be with me in the class. If there are any other costs my Abba and Imma will cover those costs including hiring an integration consultant.
- “If Caila is let into the school, she will have to come with two shadows and this will take up the space of three toddlers costing the school thousands of dollars.” Why two shadows? One will be more than enough. (In fact my Abba and Imma have friends in Jerusalem whose son with Down syndrome goes to one of the best schools with no shadow at all!) They haven’t even met me so how do they know what I will or will not need?
Abba and Imma love me so much and they want the best for me. Every specialist that they have spoken to and who has assessed me agrees that inclusion is the best option for my development.
So they are doing what any other Abba and Imma would do for their child -- fight to give him or her the best. They asked all the people who said “No” at the school what they would do if I was their child. Wouldn’t they also fight to give me what is best for me?
A few people have even been mean to Abba and Imma. They were very surprised, but they're not discouraged -- it makes them even more determined to educate the community about me and my potential. They promised me that they would continue fighting for me no matter how long it takes. Besides, there are so many people who have supported us through this. They have written emails and called the school and over 1,250 people have joined my Facebook page (www.facebook.com/cailysworld).
Abba and Imma are people who want to change the world. They told me that someone should have branded the word activist on their foreheads the day I was born. They will help me not only be the best that I can be, but also change the world to be a better place for me.
Before embarking on their campaign, Abba and Imma spoke to many great rabbis in America and Israel. They wanted to know what Judaism had to say about education and inclusion of special children. They also wanted to know if they could share the campaign publicly with the community or if it would create a chilul Hashem (desecration of God’s name).
Every single rabbi said that I absolutely should have a full Jewish education at a mainstream school.
With the exception of one rabbi in Manhattan, every single rabbi said that I absolutely should have a full Jewish education at a mainstream school. Some of the rabbis called the school. One called the school’s position “unconscionable.” The rabbis told Abba and Imma that not only could they make this issue public, but that they should for my sake and the sake of other special needs children in the community.
Many kids with Down syndrome don’t walk by age two, but our family was determined to try. My Abba did special exercises with me twice a day and my physical therapist came three times a week. It was hard and sometimes it made me cry but we kept trying.
I would get up and fall down 100 times a day but I never got frustrated and I never gave up. And guess what? On the day of my second birthday, I got up and did not fall over – I walked! In my world there is no such thing as "I can’t." I am looking to the school to have the same CAN DO attitude.
On Shavuot we will learn how the entire people of Israel stood together at Mount Sinai "like one man with one heart." No one should be excluded. There was no special section for special needs children at Mount Sinai
With God's help, my family and I will be successful and I will attend a Jewish Day School.