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Last week I attended the Matan Educators conference. Matan’s mission is to ensure that every Jewish student has access to a meaningful Jewish education and that one’s special needs never become a barrier to full participation in Jewish life.

 

The opening key note speaker was 19 year old Jacob Artson.  Jacob is autistic and non verbal.  He had typed his speech which his mom read to the audience.  I have included a link to the speech here - http://www.matankids.org/2012/03/13/jacob-artsons-keynote-address-m....  Everyone should not only read the speech but take his words to heart.


Jacob referenced Martin Luther King's I have a dream speech.  King dreamt of equality, dignity. His dream was that the US would capture the spirit of the founding principals and recognise that each person is made in the image of G-d.


Sadly Jacob noted that the Jewish community is living in the 60's by choosing segregation by excluding special needs people.  This profound message of a 19 year old was on my mind all week. Then I was confronted with my reminder just how much change still needs to come......


As a parent of a special needs child your work is never done.  For my other kids we made one call for a school and we were done.  For Caily it is therapy, meetings, advocacy, more meetings, more therapy and lots of phone calls.  We just celebrated SAR accepting her in school. Our bubble was shattered when we attended her CPSE meeting for her IEP. Special need mom's learn a whole dictionary of acronyms.  For lay people its her annual meeting with the city to access her progress and plan for the next year.  The person leading the meeting has a PhD in Education from Columbia.  She opened the meeting with a comment that she had reviewed Caily's IQ test and that she was pleased to see it was in the normal range. She then proceeded lecture us on how an IQ test at age 3 is based on concrete variables. And that later in life she may not score as high when tests are more abstract.  She then peered over her glasses and said I am sure you have read the research and that most Down's kids plateau at age 6 and told us to manage our expectations.


Apparently highly educated, educators from esteemed educational institutions can live in the Ivory Tower world of plateaus and limitations. Where THOSE CHILDREN progress to age 6 and then simply stop developing cognitively. Well we have chosen to rather live in the world of possibilities, rational optimism and hard work. We know many of THOSE CHILDREN who have progressed all the way through high school and now attend tertiary education institutions, who play piano in symphony orchestras and live happy, independent and productive lives. We prefer to live in the world framed for us by Prof. Reuben Feuerstein in Jerusalem who told us, "what can you expect from your daughter? Exactly what you expect from your other children - tertiary education and grandchildren! Its going to take an incredible amount of work but never be disappointed if you don't get there but that vision should guide you every day."

 

And Prof. Feuerstein should know. He has a grandson with Down syndrome who just finished high school, has gone through the entire mishna 20 times and will be entering the IDF soon.


It is only when the world in general and our Jewish community in particular stop talking about THOSE CHILDREN and appreciate the intrinsic uniqueness of every person irrespective of their level ability that we will emerge as a whole,  good and inclusive society.

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Tags: caily, imma, jacob artson, jewish, jodi, matan, mom, special needs

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Comment by Devorah Landau on March 18, 2012 at 11:48am

Jodi, As the mother of a 20-year-old with"special needs" I have stoically sat through so many of those acronymed meetings and held in my tears and frustration until I safely sat in my car in the school parking lot. Then one day I finally realized that the Committee had a job to do -- which was to make my son's disability sound so awful that the district just had to provide him with oodles of therapies and special services. Then, after they wrote pages and pages of reports citing his limitations, they could pat each other on the back and congratulate each other on serving kids with special needs. Through all of this, I was Forrest Gump's mother, trying to get them to see my son's potential, and pushing them to allow him to fulfill it. It was not easy -- it still isn't -- but it became my personal mission, because only I could love him as fiercely as I do, and understand how capable he is.

Caily is fortunate to have a mom who loves her fiercely, and will never stop advocating for her. What's more, she has a mom who is brilliant and articulate, and knows how to get things done, even when it's really, really hard, frustrating and exhausting. May G-d continue to give you the courage, strength. wisdom and grace you need.  

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