Share this Blog Post
This morning the Rabbi from Bnai Torah in Boca, in his sermon shared about a boy who is at the very extreme end of the Autistic spectrum.. He just had his Bar Mitzvah at the age of 16. This boy never spoke a word and when he tried to express himself, strange sounds came out of his mouth which was the energy of his intentions and thoughts. How captured can one be, never to be able to fully express and have your feelings heard?
The mother dedicated her life to the wellbeing of the boy. Computer technology offered a tremendous change; he learned to express himself on the soundboard. The first sentence he wrote: “I love you Mom”. The second:” I miss you Dad.” ( His father passed). These sentences moved me deeply, knowing from nearby the lonely place where autistic people can be. How much love they need, compassion and understanding from their environment, and how hard it can be for some of them to GIVE love. My own sister, who passed a few months ago, never spoke a word either. The computer program didn’t work for her. She seemingly chose to be at that place of loneliness, living in her own world, often very sad and unhappy. One of her deepest issues, she was never ever able to discuss and nobody could ever change that self talk in her head, was the doubt if she was worthy of being loved.
If she was lovable. That must be a terrible thought to live with, and why did she have that thought so clearly? From what place did that originate? Yes, she could hear, but she closed her self totally off. Classical music, therapeutically Mozart, she turned it always off. We as a family did love her very much and expressed that often to her. That sometimes changed her mood into a happy one.
She never gave any affection. Her dolls she was playing with together with me who came one and a half year after her, she was carrying like bread under her arm, head down. As a little girl it freaked me out. No physical touch has been ever appreciated by my sister.
What I did learn from being with her was compassion. The guilt I felt for having my own “normal” life, was huge. The loneliness my mother must have felt, soon after WW II in Holland, having a first born child like my sister and then to hear it was supposedly her fault, so was told her by her doctors. This carries a huge message. Don’t judge, don’t think you know it all, be compassionate and stay humble in whatever great place you might be. Things are often not quite as they seemed to be.
The greatness of my parents who took care of my sister to her last breath when she died from cancer, was reflected in my sister. The last months of her life, every night she hurried to step in my parents bed before they were coming, in order to sleep between them, as a baby. The only moments in her life she clearly showed in her way that she needed others.