Autism’s everyday heroes

Everyday I meet heroes. They don’t really look like heroes; sometimes they look really tired, with black rings under their eyes and messy hair hastily gathered into a ponytail. Some are Jewish, others Arab; some religious and others new immigrants with heavily accented Hebrew. But they are all heroes in my eyes, everyday heroes: every day; day in, day out.

When I first came to send my children to kindergarten in Israel, I searched for a place that would expose them to children who were different from them and that would teach them to be inclusive and tolerant. That is how we arrived at the Matam (Beit HaYeledim) Kindergarten in the Jerusalem suburb of Ramat Eshkol. We chose this kindergarten, despite the fact it is not in our neighborhood, because it is an integrated kindergarten that has children with autism and regular children in the same framework.

The first heroes I met there were Shai and Michal, the kindergarten’s managers, whose eldest child, now an adult, is autistic. After discovering that there was no appropriate framework for their son in the Jerusalem area, they did what heroes do: instead of complaining, they sought a solution and decided to create a framework that would provide what they wanted for their son. It was not easy, it never is, but it is in such circumstances that heroes are made. They needed a building to be able to make their vision into a reality and City Hall was the only address that could provide them with the real estate.

From back in my days at City Hall, I had heard the ‘legend’ of the crazy guy who slept outside the Mayor’s house for over a week, until the day came when the mayor’s wife threatened (so the legend goes), “It’s either him or me! Find a solution or I won’t come into the house until he is gone!” I now know that that crazy hero is Shai, who to this day, together with his amazing wife, Michal, continues to fight to provide autistic children and their families an inclusive framework to educate their children.

The kindergarten they established developed into a cluster of daycare and preschool classes which today mainstreams 35 children on the autistic spectrum from age one and a half through six years. Each class includes up to six children with special needs and has an additional special education teacher, aide, and national service volunteer to insure their successful integration. In addition, each autistic child has individual paraprofessional treatments, animal therapy, psychological treatments and either DIR or ABA treatments.

Every day, when I bring my daughter to kindergarten, I meet the parents of the children with autism. Parents who are my heroes. These are normal people for whom every day is a battle: to make it to the end of each day in one piece; to make ends meet despite the enormous costs of therapies; to balance work and family with the demands of a special needs child; and to find the strength to keep on hoping and trying to make things better for their children.

I meet other heroes there as well; the teachers and therapists who are devoted, day in, day out, under less-than-perfect conditions, and with inadequate compensation, to advancing and nurturing these children. And every day I marvel at their courage and strength, and admire their optimism and determination.

The issue of autism has been in the spotlight in Israel in the past few weeks. The organization for families with autistic children, ALUT, has embarked on a nationwide campaign to raise awareness of the increasing numbers of children diagnosed on the autism spectrum in the country and to demand an increase in government funding and legislation for autism. Thirty years ago, one in 10,000 children in Israel was diagnosed with autism. Today it is one in 100. There is a severe shortage of educational frameworks and trained paramedical therapists for these children, and budgets have not been increased for more than a decade, despite the sharp increase in the number of children needing care. The rights of autistic children are not anchored in legislation in the same manner as those with other types of disabilities.

One of the superheroes of this battle is Tami Yona, the Chair of the Jerusalem District of ALUT. Quite honestly, I have never met a person like her: gruff and sometimes even scary, but with a heart of pure gold. A woman who spends her every waking hour advocating for families with autistic children; taking phone calls from parents who are struggling and near breaking point; lobbying government officials and helping every single person who turns to her for assistance.

She once told me a story about her son, Yossi, who has autism. The shuttle bus which was meant to pick him up to take him to school didn’t arrive. She called the driver who said that he had missed picking him up and was already in the next suburb. “Come back and get him please,” she demanded. The driver refused. Tami took action. She bustled Yossi, who is by no means a small child, into her car and drove him to the bus company offices. She spoke to the manager, to no avail. So she made herself a cup of coffee… and set Yossi loose. Yossi, who loves all things electronic: phones, computers, calculators; had a ball. Tami stood back and watched. The manager got on the phone mighty quickly and the bus driver came and picked up Yossi and took him to school. You don’t mess with Tami Yona. She is a superhero.

In the end, although my aim was to teach my children tolerance, it was I who was most changed by my experience with integration. It is a humbling privilege to be able to meet real heroes every day. It puts your life in perspective. Ironically, after several years of being involved in the kindergarten, my own niece in Australia was diagnosed with autism, so now I have heroes in my family as well.

Last week, I asked my boss for a few hours off and I went to the Prime Minister’s Office, my old workplace. This time, it was not to visit colleagues or drink coffee – I stood on the other side of the fence, alongside my heroes, and shouted with them on behalf of their silent children.

About the Author
Rachael Risby-Raz is foreign and Diaspora relations consultant and former Diaspora Affairs Advisor to the Prime Minister.