Caila presented me with her results of her sixth grade math test. Wow 93% and a comment from the teacher “kol hakavod” meaning “well done”. Caila was beaming! I gave her a big hug and then I went to my bathroom to sob!!
Caila was 3 days old when the doctor raised his suspicion of Down syndrome. Within hours of hearing the news, Gavin and I decided that we would always fight to include Caila is school, synagogue and community. We became activists with a mission before we even checked out of the hospital.
Choosing the path of inclusion is tough! Even in 2021 we are constantly have to be the pioneers that forge a path for our daughter. A path that is not easy. It is however her right to included. It’s the right of all people regardless of abilities to be included to the fullest extent possible in every aspect of community life.
We had to fight for a place in pre-school in New York, a really nasty fight where our 2-year-old was rejected from a community Jewish Day School in one of the wealthiest neighborhoods in the world. Finding a first-grade inclusion option in Jerusalem, after we made aliya, was also painful. Eleven schools said NO!!! Finally Caila attended our local mamlachti dati (religious public) school in our neighborhood. The school had limited experience and resources for inclusion, and I was grateful for the teachers that showed a willingness to try.
Inclusion requires activism and education on so many levels. The teachers and support staff take on so much extra responsibility and they have a steep learning curve. There is the challenge of educating the kids and parents in the school. Caila also has ever changing needs and her inclusion requires the whole Samuels family to pitch in from helping with homework, improving her social skills and schlepping Caila to her therapies, tutors and activities. It also requires a huge amount of my time as I am the “CEO” of Team Caila. The hardest part is sometimes seeing no matter how hard we work and how much activism we engage in we still don’t move the needle on true inclusion.
I really don’t want to walk into a school and hear about my 13 year old, “she is cute” or ״she is so beautiful”.
My dog is also cute! Caila is a young lady with feelings, hopes and desires just like any teenager. And she, like any other teenager does not want to be called “cute.”
The reason I sobbed when I saw the math test was the test was not a reflection of Caila’s hard work. In fact, she was not given a modified test and her shadow completed most of the work. Caila had studied so hard for the test yet the teacher had not made any accommodations or a test modified to her level and then gave her a fake grade. This is not inclusion – it’s not even “chesed”. It’s what one might call ‘pretend inclusion’.
Just like the time I escalated an issue to the administration about Fridays in school. Caila did not have a shadow on Fridays and the schedule included four lessons in a row that she typically learnt with her assistant. I kept asking that the school either change the schedule, allow us to send an outside assistant or find a resource in school to be with her. I implored them to consider that it was the last six weeks of 6th grade and that Friday was a big social day after school. Caila has enough challenges, why create a situation where she is anxious and feels unsuccessful which in turn affects her social interaction. A person in the school administration accidentally sent me the WhatsApp intended for the class teacher! It read as follows: “Caila’s mother is complaining because we have not made a plan for Fridays. Can you please pretend to include her, say some nice things and she will report back good things to her mother?”
As Caila starts her journey today in middle school I pray for real inclusion. I pray for a time when we celebrate differences and believe that every child has the right to be included in all parts of society!
Good luck Caila we are all rooting for you!!