I was 13 when I decided to work with children on the autism spectrum. The catalyst and inspiration for this decision was a movie called: “Son-Rise: A Miracle of Love.” I watched this with my sister, Nicky. It’s funny how the same incident can mean so much to one person and nothing to another. My sister does not even remember watching the movie, but to me it was the beginning of everything. It was my first introduction to autism and I was completely intrigued and fascinated by it. I became the kind of teenager who only read the cliff notes for her school assigned books because she was too busy reading other books on child development. It was also my first introduction to the concept that love and acceptance is the most powerful force for healing and change. Luckily my 13 –year- old brain was still open enough to receive the powerful truth of this message.
The movie “Son-Rise – A Miracle of Love” – is the real life story of Samahria and Barry Neil Kaufman, whose son was diagnosed with severe autism and an under 30 IQ at 18 months, and their journey to help him. In the 1970’s there was little available in the way of autism treatments as at that time only 1 in 10,000 children where affected. At that time, harsh, behavior modification techniques, including electric shock, were being used to treat severe autism and this is not something they wanted for their son. The Kaufman’s searched for help for their son and were told repeatedly that autism was a lifelong condition and that there was no chance for their son to lead a normal life, or even learn very basic skills to take care of himself. Doctors advised institutionalization. Instead of going with the treatments they were offered by professionals, they decided to work with their son themselves. They took a very different approach from the mainstream thinking and attitudes of that time. Instead of viewing their son’s unique behaviors of hand flapping and rocking as a tragic sign of his ‘terrible disorder’, they took a different view. They decided to see him as a gift in their life. Read More
From that point onwards working with children on the autism spectrum became my dream, my focus, and one of the great passions of my life. Throughout my teenage years I would spend my summer holidays and spare time working in play schemes and after school programs where I might encounter special children, and most importantly children with autism. One summer, to my great delight I met my first child with autism, I was 15 and she was 14. She wore a helmet because she would bang her head, and was at least a foot taller than me due to the specially designed very high heeled shoes she wore to accommodate her toe walking. I was assigned her for the day and within seconds of our meeting she got me in a headlock and started walking, dragging me along. She walked straight out of the school building and headed for the white line in the soccer field. The only knowledge I had about autism and how to be with a child with autism was the movie I had watched. It had left me with two ideas, join the child in their own world and love and accept what she wanted which was to walk around the soccer field. So I concentrated as much as I could on enjoying the white line and the walking, and felt good that at least she wanted me with her. She was assigned to me for the rest of the summer, because when she was with me she never banged her head. This was my very first sign of the healing power of joining. We walked, laughed, played and had the best time together. She was my first real life encounter with autism and I was hooked.
My second encounter was with a child of a family friend. He was 3 years old when I met him and was such a sweetheart. He loved to run back and forth and back and forth from one wall to the other and switch on and off light switches. Again when I was with him I focused on joining him in his activities and loving and enjoying being with him. I noticed how he would look at me and smile when I ran with him and was touched by the loveliness of his personality. Seeing glimpses of his personality shine forth as I joined him consolidated the idea that there was a complete person inside this silent boy and I wanted to find a way to reach him and help him communicate to the world. This only solidified my belief that joining a child in their activities was an incredible way to connect with them.
I went on to college to study music and education at Surrey University. I chose music because it was a subject I was good at and I had the idea that I might become a music therapist. The more I learnt about music therapy the more I realized it was not the therapy for me. I think it is a wonderful therapy that does great work with children with autism, but for me it was too restricted; I wanted to work in a more varied way. I was still itching to work directly one-on-one with children with autism in a therapeutic way, and was discouraged with how long it would take until I was allowed to do that. I was told in order to work directly with children one-on-one I would have to do more educational work and I did not want to wait – I wanted to work straight away.
Upon leaving university instead of going for further academic studies I went to work for Dr Rachel Piney, the author of “Bobby – Breakthrough of an Autistic child” and “Creative Listening” and was the founder of Children’s Hours in North London. She worked with a variety of children some who were emotionally disturbed, and a number of children with autism. She truly was a genius with children, they loved her and she had an incredible ability to connect deeply with them. Like most genius’s she had a colorful character and loved to push peoples buttons. She was 80 when I met her, and my initial interview took place while she was taking a bath. After having asked me a few questions about myself, she let me know that I had passed the test. What test? I asked. She then informed me that she liked to see how people reacted to different situations. The fact that I was not fazed by her being in the bath lead her to believe that I would not be judgmental toward the children I would be working with.
Although she was 80 and walked with the help of crutches she had a lively mind and soul. As part of my training with her I would accompany her on the different lectures she gave in her surrounding community. I would carry suitcases of books around for her. Amazingly – she carried around the book “Son-Rise”, by Barry Neil Kaufman, which was the very story I had watched on television when I was thirteen! She trained me herself to work one-on-one with the children, and I spent every day working directly with children with autism. I was in heaven. I was struck by the intelligence and love each child showed me on a daily basis. It was here that I met a family who were going to the United States to participate in a special program for their daughter with autism. Although I had no idea what the program was, I jumped at the opportunity to have this adventure and learn another form of treatment for autism.
It was not until on the second day of the program in America, when they showed us the NBC movie “Son-Rise: A Miracle of Love”, that I realized that this center was run by the family I had watched the movie about, that had inspired me to work with children with autism in the first place. Wow! That was a very awe-inspiring moment for me. I had come full circle, and it was as if in some way I had come home. I knew that I had found the methodology that I wanted to train and work in. Until that point I had never encountered two particular traits within the same methodology. First, the staff was so sincere in their love and delight of the little girl I had come with, you could see it and feel it in everything they did. Secondly they were also so powerful and effective in asking her to change and grow. They asked her to look at them, to use the spoken word, to dress herself. They helped her to grow so much during that week and all within the context of truly enjoying and loving her.
I carried on my work with Dr. Rachel Pinney and then, instead of pursuing further study I returned to the Autism Treatment Center of America® to begin my formal Son-Rise Program® training. I trained intensively for five years to become a Son-Rise Program Child Facilitator and Son-Rise Program Teacher. This is about the same amount of time and energy it would take to get a PhD. My training was extremely hands on. It is an in depth training and has a strong emphasis on attitude. I worked directly with children and adults on the autism spectrum and got direct feedback from the senior staff. We were video taped and then our time with each child analyzed, sometimes frame-by-frame or second by second. I also worked directly with parents and other family members training them on how to work with their children and received feedback. If we were to teach a principle or technique, we would be observed and then our explanations and sharing would be reviewed in detail by our trainers in order to help us to be the most effective communicators possible. We spent hundreds of hours exploring our own thoughts and feelings so that we could truly approach each child and each adult with an open, caring and accepting heart.
One thing The Son-Rise Program® recognizes is that each child with autism can be so different, motivated by different things, and have different varying degrees of complex challenges. I needed to be able to recognize these challenges, connect with and help these children and families from the very start of meeting them. Then I had to be able to articulate what I knew and teach it to many families so that they could work in this way with their own children. This took a lot of time and focus on my part and experience of different children and families to acquire.
I have now worked with The Son-Rise Program® for over 20 years, and feel so blessed to have supported so many children and their families. I have spent thousands and thousands and thousands of hours working 1:1 with the most lovely, silly, funny, determined and hard working children and adults. I have never worked with a child who did not want to learn, who did not try their very best. I feel so grateful to have had so much time with each and every one of these children, for they have taught me what it means to open my heart, to listen and have the daring to try even the things that seem impossible at first. I have been hit, punched, kicked, bitten, spat on, defecated on, peed on, loved, kissed, danced with, been talked to for hours on end about numerous different subjects from the magnificence of washing machines, to the statistics of earthquakes, and I have joined thousands of unique and wonderful different “isms.”(“Isms” are what we, in The Son-Rise Program® call a child’s repetitious behavior or ‘stims’.)
Although I can never say that I have stopped learning, and am sure that I will encounter many more wonderful different situations, I can say that I have experienced many that you encounter today with your children. Although your child is unique, I am sure that I have worked with a child who has displayed some of the same behaviors, motivations, nature or challenges as yours. One of the great parts of my education and training is the depth and breadth of hands on experience that I have to share with you. I know of no other training that exceeds this. I feel that I can say with confidence from my own heart that although I have never met your child or children I know that I would love them. Their uniqueness and loveliness would not be lost on me no matter what their behaviors are.
I am now the Director of The Son-Rise Program and I train the staff at the Autism Treatment Center of America to become Son-Rise Program Child Facilitators and Son-Rise Program Teachers. I also teach individual and groups of parents to run Son-Rise Programswith their children. I do this either via the telephone, going to their houses or when they come here to our center. We have parents come to our center from all over the world. I have worked with families from Thailand, Singapore, Africa, Malaysia, China, France, Poland, Russia, Slovakia, Argentina, Brazil to name a few, and frequently travel with our staff to Europe to present The Son-Rise Program. It has been such a wonderful journey and I feel so blessed to have met and worked with so many amazing families and their children.
This is why I have written this book. I want to help you and offer you the tools and strategies that will help you build a wonderful life with your very special child and family.