Embracing Disability

A Very Special Journey

I was standing in my daughter's kitchen the day after she had given birth to a beautiful baby girl when the telephone rang. My husband answered, spoke quietly and then, without saying a word, handed me the phone. "Mum", said my daughter Debbie from the hospital, "she's Down's. The baby has Down Syndrome", and then she began to sob.

Eighteen months later her elder son, Henry, was diagnosed with high functioning autism (now known as ASD – Autistic Spectrum Disorder). Thus began, for my daughter and son-in-law, the long and difficult journey of acceptance and knowledge, fighting every step of the way for the best care for their children.

Eight years ago, they made aliyah from London. They learned, through bitter experience, how to negotiate the Israeli system of special care provision which is truly excellent but difficult to access. They have endured endless meetings with special care school heads and teachers, mainstream school heads and teachers, psychotherapists, physiotherapists, doctors and local council minions. The number of meetings has been endless and often harrowing, sometimes resulting in tears which, nevertheless, often helped to break through walls of seeming indifference and hostility.

Along the way Debbie, together with her husband Jonny, started a local baseball team for children with special needs. They wanted to provide a place for these children to play a sport at their own individual levels and pace after many had been rejected from mainstream sport activities. To explain the game and to help engender team spirit, Debbie wrote "When Words Fail" for parents and children to read together. The baseball team, the only one of its kind in the country, comprising up to 18 children each week, ran successfully for several years.

After Henry entered mainstream school, Debbie began to understand how very difficult this world was for a child with ASD. The challenges were huge and included adjusting to new surroundings, routines and expectations, navigating the rules of the classroom and, especially, the playground. As a result, she wrote an outline of "Getting Ready for School for Children with Autistic Spectrum Disorder" which she sent to a publisher in New York.

In response, they asked her to write a story about her own experiences and so she produced "A Brief Moment in Time", reliving the challenging early years. "A Brief Moment in Time" was released online and reached No. 10 on the special needs bestseller list in America and went on to win two honorary mention awards from the New York and London Book Festivals.

In the interim, Debbie began cooking with Henry.

"One cold winter's day, when Henry was four years old, we decided to bake cookies. I purchased supersized cookie cutters to help compensate for clumsy fingers. I was surprised that Henry's movements were controlled and attentive. His cookie shapes were immaculate. Every evaluation we had received in his four years had stated clearly that Henry was unable to concentrate for longer than five minutes on any given task. As a tray of freshly-baked cookies came out of the oven, I realized that in the kitchen Henry's concentration and fine motor skills were excellent."

In time, Debbie began a weekly cookery class for all children including those with special needs. When she resubmitted her "Getting Ready for School" book proposal to another publisher in the UK, her bio included the fact that she taught children's cookery classes. This publisher asked her to write a book on teaching cookery to special needs children. Two years later, in summer 2015, "The Cookbook for Children with Special Needs" was published and the book is now available through all major book providers such as Amazon and Book Depository. 

After Debbie was invited to address youth groups about how to respond to children with special needs, she created Mazal l'Chaim (Luck for Life) in 2013 in order to promote and encourage tolerance and understanding in the belief that education dissipates ignorance and breaks down social barriers. Exchange visits between the pupils of Henry's mainstream school and her daughter Amariah's special school were organized.

At first, the mainstream children were suspicious and fearful. However, following many discussions and question and answer sessions which Debbie held with these children, the results, when the two groups of children met, have been meaningful and ground-breaking, creating a real sense of achievement for everyone involved.

I only wish that my daughter and son-in-law could have seen into the future all those years ago. They would never have recognized where they are today. They have grown beyond belief. New, untested territory opened up before them and they have succeeded in negotiating every bump in the road. I have the greatest respect for the way they have ridden the storm and brought up two amazing children, alongside gorgeous twin girls who arrived on the first day of Operation Cast Lead.

Many years ago, I heard Mark Haddon interviewed at the Orange Book Festival in London. Author of "The Curious Incident of the Dog in the Night- time", he had worked, albeit briefly, in a special needs facility. I will never forget his words: He said that a disabled person is 10% their disability and 90% their own personality. How true that is.