One of my five New Year’s resolutions included writing my blog every week. So far I have been somewhat more successful with my diet resolution. The reality is that I am been so busy because we launched jgives.com our new charity portal, just before Rosh Hashana. I also hosted almost every meal over Rosh Hashana in Tel Aviv where I did not have a kosher kitchen just foil trays, 1 pot and 1 knife and no help at all. We arrived back to our NY apartment at 6:30pm Sunday showered and fed the kids. By 8pm I was in a meeting and 7am the next morning the kids were off to school. No adjustment time after two and a half months away in Israel. By Monday I was in my usual breakneck routine hosting events, meetings and going to Board of Education offices to continue my fight for Caily’s inclusion.
Thank G-d we have an amazing solution with SAR Academy – the one Jewish day school that stood up for doing what is right even if it’s not easy and welcoming Caily into the kindergarten class. Fighting an administrative bureaucracy is another story. While SAR provided the place in the class, NYC Department of Education provides her support services – PT, OT, Special Education, Speech etc.
When we had your meetings with NYC for placement in the school system and we explained how well your child is doing in inclusion, their response is, “Great, then she does not need as many services”. We as the parents carefully explain that she is in an inclusion environment with high expectations and doing very well because of all the support she gets. There City’s fallback position is then, “Well if she needs so much support then she should be in a special education environment and not in an inclusion class”.
That’s when we need a lawyer to fight for her rights as the Federal law says she is entitled to an education in the least restrictive environment. I always pity the people who don’t have the education, financial resources or determination to fight the system which is designed to cut costs regardless of what is best for the child. Oh the hours and hours fighting for Caily’s rights.
Over the summer Caily went to a regular camp in Israel. When we spoke to the administrator about Caily, she didn’t see obstacles just possibilities. After one phone call she agreed to have an extra junior counselor (15 year old kid) for her group to help Caily when needed. There was no drama and the situation worked out great. One day I asked Caily how was camp and she said “great”. She told me that they did Zumba, a dance class. She said, “I love Zumba but it’s hard for me – I need help”. My stomach churned because that will always be Caily’s story, she will always need support but that does not means she cannot or should not be included or get as much joy out of the activity as any other kid.
This weekend we attended a ballerina birthday party. She colored in a picture of ballerina, made a crown, danced with the kids and had a ball. I challenge any parent who did not know Caily to have spotted the child with Down syndrome. It’s sometimes hard for Caily and it’s also hard for me to succeed in this journey and fight for inclusion. But yesterday, while watching my little ballerina with her huge smile and bright eyes, I know it’s the right thing to do………
Originally published: September 16, 2013
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