Four days after I heard the news of his death I still can’t comprehend a world without Stanley. He was like earth, fire, wind and water; an essential elements of our universe. His light guided us and his fire warmed us. His gravity grounded us.
I will never understand what angels and demons drove Stanley, but I do know that they drove him to a passionate pursuit to make the world a better place. He was driven and he, in turn, drove us to care more and to do more.
Stanley’s uncompromising nature made him difficult to contend with at times. He was, to an extent, a “Challenging Child” who could be demanding, argumentative and petulant. But, without a doubt his unyielding passion, drive and devotion were core elements of his brilliance: We do not have to accept the world as it is; we can change, we must change. Like Einstein who questioned fundamental assumptions about time, space and matter, Stanley’s fierce intellectual independence allowed all of us to see our children and ourselves in a new light. His genius enabled us to see a better world and his passion drove us to pursue it.
No one would ever question Stanley’s fashion sense; he had none. Sweat pants, flip flops, a well- seasoned baseball cap were standard attire in and around the home. When Jo and I met with him for our first session with Jacob, he sported a flannel shirt, wrinkled khaki pants and sneakers. After our experience with white coated and carefully quaffed clinicians at the child development center, we didn’t know what to think. But within minutes we knew that we had found the only person who could help Jacob and the only person we would let help Jacob. Stanley’s attitude toward dress revealed his contempt for social conventions that did not directly advance human good and humankind. The blue blazer, tie and button down blue shirt would come out for presentations, speeches and conferences. They were tools to serve a greater good but had no intrinsic value of their own. Thus, Stanley compelled us to ask important questions: What is truly important; what truly matters.
Without question, our son Jacob would not have healed had Stanley not questioned and challenged (and compelled us to question and challenge) all the presuppositions of the day; children with ASD cannot get better; they are slated for a life of marginality. Jacob would not have been the warm, thoughtful and funny teenager he is now if we had blindly gone along with the directives proposed by the “experts”. When we sat impassioned, and emboldened in front of the Board of Education special needs panel, rejected their advice to send Jacob to their “special needs program” and demanded our rights to educate him in the “least restrictive environment” – it was Stanley’s uncompromising passion that drove us and sustained us. We were able to see a better world and a better future because Stanley showed us that world and convinced us that it was possible. When the administrator of his elementary school insisted that Jacob be placed on medication, Stanley’s analysis was direct and simple: “They’re full of shit”. Those were clinical terms; an assessment of a system that far too often looked for the easy way out and too blithely accepted compromised on behalf of our children. Stanley would do none of these things. And he would not permit us to do these things.
Last night, on a cool, beautiful southern evening, I sat on the deck and had dinner with Jacob. We talked of movies, of politics, of life. It has been both a typical and eventful week for Jacob; of the five colleges to which he was accepted, he chose to attend Georgia College and State University, a lovely small liberal arts college in Milledgeville Georgia. He was scheduled to have the final interview to confirm his participation in a pre-college year program in Israel. He drove to school on those days where my work took me out of town. He got an 89 in his statistics test. He did all those things one would expect of a typical teenager. He did all the things he would be incapable of doing without Stanley’s intervention (along with those of Stanley’s remarkable colleagues). Jacob continues to lay the foundations for his future; a future that, seventeen years ago, when a mute and isolated child rummaged through a closet of broken toys and meandered aimlessly about a sun drenched office on Glenbrook Road in Bethesda, Stanley was able to see. When the world seemed so dark for us, Stanley showed us a beautiful and hopeful future, illuminated a path forward and compelled us to pursue it. “You should not place any limits on Jacob’s potential, he might not go to MIT but he just might.”
What will we do without Stanley: All the things he taught us to do: to be uncompromising, fierce advocates on behalf of our children; on behalf of all children; to see the world differently and challenge conventional wisdoms and assumptions; to care less about social norms and niceties and more about what truly matters – our children, our families, each other. For all he has done for us, this is what we must do for him.
