My Son Is Not His Illness

December 1, 1999
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Bradley Shavit Artson

When our son Jacob was about two years old, he began to pull away, to slide into another world, behind some wall that we could not penetrate. We constructed a delusion to fool ourselves into thinking that nothing was wrong, that our boy was just developing differently from his twin sister. The horror was so vast that we willingly agreed with the popular pabulum that people offered us: We need to let him grow to be who he is without labeling him. We repeated this desperate, misguided mantra until we could no longer honestly say it: until the reality was so pressing that it shredded our denial. Finally, we took Jacob to a specialist for diagnosis. After a frustrating and futile effort to get Jacob to engage in the diagnostic test, the doctor told us that Jacob suffered from something we had never heard of-PDD, Pervasive Developmental Disorder, a form of autism.

I felt as though the entire universe had caved in, that we were the living dead. I had been betrayed by God and the cosmos, and by everything. For months the pain was so great that I couldn¹t speak about it to anybody and I couldn’t confront it on my own.

Since that time, our life has become a battleground. Our home is ground zero in our private war against autism. We are fighting for a beautiful boy who’s locked somehow inside himself, who needs to learn how to emerge.

Every day is a struggle. The things that other parents don’t have to worry about worry us. Well-intended opportunities confront us with insurmountable challenges. How can we accept an invitation to someone’s house when Jacob is going to sit by himself the whole time? How is he going to be able to play with other children when he doesn¹t really know how to play, when he has to be guided, and when the other children have to be taught how to play with him? How can we bring Jacob to any new place when all new places are frightening?

This is not meant to be just another anguished parent venting in public. I’m sharing this, my pain, because all of us carry pain, and all of us carry wounds, and all of us bear disappointments. I want to share what my son has taught me about life because what he has taught me is precious and applies to us all. Jacob has taught me to let go of the future. Jacob taught me that I had to give up the thousands of expectations that I didn’t even know I possessed. I only discovered that I counted on them when I realized I couldn’t have them any more. Although we tell ourselves, “Our children can grow up to be anything,” we don¹t know the extent of what we demand of them until they won’t do it. And then, suddenly, we realize how much we want for them and from them. I now admit that I don’t know Jacob’s future. Nobody knows Jacob’s future. I pray that he will have one that is full and rich. Jacob has helped me to focus more deeply on something I knew only intellectually: all we have is today. Tomorrow may never be, and it will certainly not be what we expect. Because I can’t know how Jacob will develop, or how he might respond to different treatments, I am forced to live with the Jacob we know today. And it is that Jacob that I love. He is my comfort against tomorrow’s fears and fantasies.

Jacob also forced me to reassess what is really important in the world, what really matters in our loved ones. When I first found out that Jacob was autistic, I confess that I experienced fantasies of his dying. I imagined being rid of him, of starting over. I couldn’t face the fear and the pain of not knowing whether he would ever come out of his shell. I didn’t know if I would hear him speak to me. I didn’t know what his future would be. I feared that he would have to endure a lonely old age in which nothing would make sense, his Abba and his Ema would no longer be there for him, no one would appreciate or love him. That nightmare terrifies me still. And so, in those first horrible months, I would toy with the idea of his death.

Those daydreams made me realize that the only possibility more terrifying than living with Jacob and his illness was the thought of living without him. His sweetness lights up my soul. When he looks at the Torah and smiles and says “bye-bye Torah” at the end of the Torah Service, something inside me glows. With all of my fear of the future, with all of the suffering and uncertainty his autism entails, Jacob is a blessing. Every child is a blessing. I thank God for Jacob because he is a gift every morning when he crawls into bed with me. Jacob has taught me that what really matters isn’t the IQ, although it¹s nice. It isn’t accomplishments, although those are also beautiful. But what is really at the core, what we can’t give up, what is the essence, is soul. What is the essence is sweetness and goodness and loving and caring.

Our worth is not what we do; it is that we are. What is precious is simply that being ourselves, we bring something precious into the world. We don¹t have to earn God¹s love, and we don’t have to earn each other’s love, either.

I see a beautiful soul, a zisen neshomeh, trying to express itself, and I see his sickness trying to shut him in. I see Jacob beating against the limits of his autism, struggling to emerge. I know my Jacob from the inside out, and I know that my Jacob is not his illness. But I also see people shying away from him-confusing his illness for him and not seeing the beautiful boy but seeing instead a label, autism. Jacob isn’t autism and Jacob isn’t autistic. Jacob is Jacob. And he is like every other child: precious, and sweet, and beautiful if addressed appropriately. It takes effort. It takes starting with Jacob’s illness and working toward Jacob’s soul, so that his label is a tool, not an obstruction. We live in a world of labels; we live in a world of division. We live in a world that sees only the label and dismisses the person beyond the label.

My Jacob has taught me more in his six years than all of my professors at Harvard and in rabbinical school, because Jacob taught me that what really matters is in the heart. He reminds me to love the unlovable, because the great miracle of life is that if we love the unlovable, they become really lovable indeed. And so do we.

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Rabbi Bradley Shavit Artson is the Dean of the Ziegler School of Rabbinic Studies at the University of Judaism.

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