When Caily was born we had no signs anything was wrong. From the recovery room we posted on Facebook that we had delivered a healthy and precious princess. We also sent an email to 8000 www.jicny.com members. On day 3 of her life a pediatrician asked “Mrs Samuels did you do genetic testing?” – from that moment on, our reality changed. We were now parents of a special needs child with Down syndrome.
There are lots of support groups and well meaning people with advice. In fact one day I will publish a book with some of the stupid things people said to us. So much so that Gavin wanted to make a T Shirt for Caily that reads
“I have an extra copy of chromosome 21 that accounts for my mental retardation what’s your excuse?”
While searching for information we came across an organization the Feuerstein Institute. Gavin is a physician who only believes in anything that has published scientific data was weary of so many approaches and treatments that he considers to be essentially hope in a box presented to desperate parents who are willing to pay anything to help their special needs child. The Feuerstein Institute works extensively with Down syndrome population and other special needs and has published over 2,000 peer-reviewed articles and numerous books. They essentially believe that a person can learn and change with the correct intervention. Inclusion in society, community and school is their goal.
Professor Feuerstein who is in his 90’s and studied under Jung and Piaget proposed the concept of cognitive modifiability – the idea that one’s cognitive function is not fixed but rather with the correct intervention and hard work can maximize the child’s potential. He has written a book “If You Love Me DON’T Accept Me as I Am”. Essentially the idea is to “actively” accept your special needs child. Instead of passively saying, “Oh well G-d gave me a special needs child and I have no choice but to accept this”, Feuerstein philosophy is about actively accepting the challenge, believing your child can grow and change and constantly working on new goals. It’s about believing in your child, setting life goals, working hard and staying optimistic but not being disappointed if they do not get there. In our first meeting with Prof. Feuerstein, we asked him what we can reasonably expect from Caily and he answered, “Exactly what you expect from your other two children – tertiary education and grandchildren! Keep that vision in mind every day because its going to take a huge amount of work and effort to get there and you cannot be disappointed if she doesn’t reach all or any of these goals but that is what we will aim for”
Caily has been in a mainstream class fully included since age 2. She is a happy and confident little girl who doesn’t think she is different from her peers. Inclusion is not easy for her – she has to work very hard to keep up and has a team of highly skilled and dedicated therapists to help her. Her teachers and the entire Early Learning Center Faculty at SAR where she and her siblings attend school are committed to working with us and sharing our vision and are putting in tremendous effort to try making this work. We are so grateful to SAR.
We don’t know what the future will hold. We are not sure that inclusion all the way through school is possible or even the best thing for Caily at this stage. But we do know that according to every expert that has assessed her to date, she is unusually high functioning and an excellent candidate for inclusion.
We also know two other things – that we LOVE Caily very much and will NEVER accept her as she is.
Originally published: October 28, 2012
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