You have probably never met anyone like me who can’t speak but can communicate by typing on the computer. I am an example of how someone can be impaired in one area but have great strengths in another. That is true of most people, but it is true in the extreme about people with autism.
When I was diagnosed at age 3, I couldn’t speak or move my body properly, and 15 years later I am still extremely impaired in both areas. But if success is measured by being a mensch and helping make this world a better place, then I would classify myself as a success. You can be the judges.
When I turned 6, my family moved to LA in search of opportunities for me. Our journey took us to many purported experts, but they all saw me as merely my extremely impaired verbal and motor abilities and assumed my cognitive abilities must be similarly nonexistent. After several months, me and my parents came to the last place on our list — the “autism doctor.” I am not really sure what I was expecting, but Dr. Ricki looked nothing like I expected. She wore a fashionable sweater with a colorful necklace. But mostly I noticed her smile. I had been to so many doctors at that point I couldn’t even remember all their names or specialties. But not one had ever smiled at me like Dr. Ricki. She kept smiling, watching and waiting for me. For the first time in my life, I was able to smile back. I stayed for an hour and we played with puppets, but mostly I was just watching Dr. Ricki in complete fascination. I had expected that she would have some medicine or treatment to prescribe and that would be the end of the appointment. But she said nothing about any pills or therapies. She just smiled at me for an hour as though I was a person worthy of respect and dignity. I had always thought of myself as a defective human being. It had never occurred to me that a doctor would see me as a person with the potential to be a productive member of society.
At that transforming moment, Dr. Ricki taught me that despite my disability, I was as worthy of love and respect as any other child. That smile gave me hope, and hope gave me the motivation to begin the battle to conquer autism before it destroyed me. So I began my journey of millions of small steps. Along the way I found supporters as well as detractors, and the steps sometimes did not appear to be going forward, but I persevered because I had hope and people who believed I could fly. Today those steps brought me to blog for you.
So that is my story. I think it is also the story of many autistic kids I have met and many poor black and Hispanic kids I have known at school. I think most kids who fail do so for the same reason I did –- I didn’t believe I was capable or worthy of success.
What makes a child believe in himself or herself? These are the factors that have made a difference in my life:
First and foremost, my family has never wavered in their belief that I am a child of God with an equal claim to dignity and respect as any typically developing child. I know that it has taken a heavy toll on them, but it has been a lifesaver for me. My twin sister is my best friend, fashion consultant, role model and cheerleader. My mom has been my tireless advocate and my rock. My Abba, whom I adore more than anyone on earth, has given me a model to strive to emulate.
Second, I have been blessed to have many wonderful mentors throughout my life, including teachers, Dr. Ricki, my horseback riding instructor, the coaches at my basketball programs and, most recently, my new adult case manager. All these people believed I could achieve greatness despite my body’s limitations and the naysayers around them. Kids with special needs don’t need to be reinforced like dogs with good job and good listening and similar phrases as if we are in puppy obedience training. What we need instead is stimulation, patience, and someone to believe in us and notice our little triumphs.
Third, I have found great support in God and Torah. I think that people vastly underestimate the importance of spirituality for people with special needs. Of course I have some friends who are confirmed atheists, but many more for whom Judaism is a lifeline. My body and emotions are very disorganized, but the one time that my mind, body and emotions feel totally connected and in harmony is when I pray. I have also learned many important lessons from listening to my rabbis’ sermons because we all need to live with meaning and know that we are not alone in our struggles.
Finally, Judaism has taught me the importance of gratitude. For much of my life, my existence was controlled by autism. Autism was at the root of every experience I had or didn’t have. I lived with constant anger at my disability and fear that it would isolate me forever. Then one day several years ago, my wonderful physician and mentor, Dr. Ricki Robinson, asked me what is the opposite of anger. I realized that it is not the absence of anger, but rather acceptance, laughter and joy. I also realized that fear and anger just produces more fear and anger, while acceptance brings connection to God and humanity. For many years I had been praying for God to cure my autism and wondering why God didn’t answer my prayer. I realized at that point that I had been praying for the wrong reason. I started to pray for the strength to accept autism and live with joy, laughter and connection. My prayers were answered more richly than I ever imagined! Sometimes I still hate autism, but now I love life more than I hate autism.
But there is one part that is still incomplete before I can truly believe in myself and that is a sense of belonging. Everyone needs a sense of belonging and many of you probably are involved in your Jewish community for precisely that reason. In Los Angeles, there are now several wonderful programs for Jewish kids with special needs, and they deserve your support. My peers and I have been fortunate to have had inclusive opportunities in part due to the fact that our typically developing peers had to fulfill their community service requirements. But now my peers are adults too, so there are no more community service requirements and no one to reach out to all of us formerly cute kids who are now trying to make our way in the world as adults. I love my autistic friends, but I do not want to spend the rest of my life in a special needs cocoon.
So here are some “mensch” ideas I would like to propose for your consideration:
1. Inclusion isn’t just about me, it is about everyone. I have seen the incredible stress my family has endured because of me, and being excluded from our Jewish community, or having to constantly fight to be accepted as part of it, has greatly magnified our stress. After ten years, we finally left our synagogue and joined a new one where people smile at me even if I am sometimes too loud or excited and no one stares at me like I am a piece of trash. The kids engage with me even when they are not getting community service credit for doing so. I often wonder how many non-disabled families have the same experience of feeling ignored in their synagogue. The truth is that a shul that welcomes me is a synagogue where everyone can find a place and people will want to join and be engaged and involved. This is not something a rabbi can do alone because one of the rabbis at our prior synagogue was and continues to be very supportive of me personally. A synagogue is a community and we all have to reach out to support each other.
2 The best peers and aides I have had didn’t have any special background. It doesn’t actually take any training to be a leader who models inclusion. It just takes an attitude that all people are made in God’s image and it is our job to find the part of God hidden in each person.
3. My favorite Jewish holiday is Passover because it is the story of our people’s journey from degradation to liberation. That is the story of my life and the lives of many of my autistic friends. Our lives are not determined by where we start. God lures us to find our gifts and to choose liberation. My journey has taken me through the desert and toward the Promised Land. I look forward to our journey together toward the day when we can all stand together at Mt. Sinai as one people, the day when everyone is included and together we bring God’s glory to all of humanity.
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