4 Questions of A Special Needs Child
Caily’s Four Questions for Pesach
Hello, my name is Caila Samuels but I liked to be called Caily. I am 2 years old and I have Down syndrome. Everyone tells me that I am doing really well – I walk and feed myself and play all the same games as my other 2 year old friends at playgroup. I am 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 Manhattan Day School – 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 4 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.
At playgroup, we learned all about Pesach – the matzah, the 4 cups of wine and the 4 questions that they youngest child asks. I think I’m a little young to ask the 4 questions myself this year but I do have 4 other questions to ask. Maybe you can help answer them for me?
1. Why is this child different to any other child?
All the other 2 year olds who have applied to the Toddler program at MDS, 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. Randy, 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 MDS teachers what I can do if they won’t even meet me? Don’t I deserve a chance just like any other Jewish child?
I have a friend named Avi who is 3 years old. Avi 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 to begin with – they had never done this before. The Principal and the teachers love him so much and tell his Abba every week that they are amazed every day and what he is capable of and get so much out of having him in the class.
2.Why is this school different from any other school?
The vast 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 MDS think differently to all these people in so many countries? How can they ALL of them be wrong and MDS be right?
I know of special children who go to Yeshivas all over – Brooklyn, Riverdale, Long Island, Boston, New Jersey, Miami, Montreal, Los Angeles – 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:
§ “MDS is not in that business” What business is that? – I thought MDS was in the business of Torah education. We have a chiyuv to give every child a Torah 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 NYC 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 2 shadows and this will take up the space of 3 toddlers costing the school thousands of dollars” Why two shadows? No other Down syndrome kid anywhere in the world needs 2 shadows. They haven’t even met me so how do they know that what I will or will not need?
And some solutions put forward by the MDS leaders when Abba and Imma asked what they should do:
§ “Send her to Chabad”. But Chabad only goes to age 5, then what? The answer to that was, “Then what? Then Moshiach will come!”
§ “Send her to a non-Jewish school and she can come to MDS to light a candle on Chanukah and for a hamentash on Purim”. Would that be good enough for your own child? If not, then why is it good enough for me? I may be different but I’m not less worthy.
3. Why are my parents different to any other parents?
Abba and Imma love me so much and they want the best for me. They work with me for hours every day and make sure I get the best therapists. Every specialist that they have spoken to and who has assessed me agrees that inclusion is the best option for my development.
So my Abba and Imma 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 MDS what they would do if I was their child. Wouldn’t they also fight to give me what is best for me?
Some people have been very mean to Abba and Imma. Two different people have called to threaten them. One told them that the whole community would join against us and that we “would be squashed and not be able to show your faces in public”. My Abba and Imma were very surprised that religious people would be so mean but they are not discouraged by that – 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. And anyway, there are so many people who have supported us through this. They have written emails and called the school and over 1,100 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.
4. Why is this school not bound by Halachic opinion?
Before embarking on their campaign, Abba and Imma spoke to many great Rabbis in Manhattan, Gedolim in other parts of America and in 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?
With the exception of one Rabbi in Manhattan, every single other 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. The Rabbis said that Abba and Imma weren’t creating a chilul Hashem – MDS was.
I wonder……which Rabbi did the Principal and Administration of the school ask? After all it does state on the school website: “Every student, regardless of strength or weakness, talent or need, is considered a valued member of the Manhattan Day School (MDS) community”
Answer to my Four Questions:
Most kids with Down syndrome don’t walk by age 2 but we all were determined that I would. My Abba did special exercises with me twice a day and my PT, Lisa came 3 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 can’t. I am looking to MDS to have the same CAN DO attitude.
My brother told me the story of Pesach, how Moshe had to go back 10 times before the Israelites were free. So to, with Hashem’s help, my family and I will be successful and I will attend a Jewish Day School. After all, we will read about the four sons at our seder and on Shavuot we will learn how all of klal yisrael stood together ki ish echad b’layv echad – like one man with one heart. No-one should be excluded – there was no special section for special needs children at Mt. Sinai
So I with the challenges and blessings that I have been given tell you what people older, wiser and more able than I seem not to understand. The answer to my Four Questions is: I love everyone unconditionally and fully. I accept everyone for who they are because we were all created b’tselem Elokim. I judge no-one. I am a SPECIAL CHILD