“I didn't want to think of Benj in terms of syndromes and categories and labels and diagnoses, in terms of his performance on tests and evaluations, in terms of his differences from a perceived norm or imagined ideal. One of the questions my experience with Benj raised for me is: how do you value your child in a culture whose benchmarks for achievement and whose standards for evaluating and assessing kids are so out of line with your own values and who your child is?”

“People often ask me: What are your goals and hopes and dreams for Benj? And the answer is so simple: That he be seen whole against the sky. That he not suffer beyond his and my capacity to bear it. That he be allowed to enjoy the pleasures of "his own private nook" and come out of that nook for joyful engagement with others. That he always hold on to his visionary gleam, his bright radiance.”

“Living with Benj was like experiencing an unfolding miracle.”

“There is nothing less romantic, literary, or lyrical than the language of pathology, diagnosis, symptom checklists. As I read through these checklists over and over again I was struck by the harshness, the crudeness of the terminology. And once the evaluation process began, more and more distinctly unpoetic terms were added to the lists, as the problems quickly grew in scope and seriousness.”

“In the last month, I've realized in a way I never had before that this is and will be my life -- this day-to-day work on and for and with Benj. He will improve and develop and there will be many rewarding moments. But he has a lifelong disability and he will always need loads of effort on his behalf, both in every single interaction with him and with his teachers and therapists. It can be extremely exhausting and overwhelming... But the blessings of being his mother far outweigh the worry and stress and fatigue. Truly he has made me an infinitely stronger, more patient and compassionate person. I can do this.”

“You say you are a nameless man. You are not to your wife and to your child. You will not long remain so to your immediate colleagues if you can answer their simple questions when they come into your office. You are not nameless to me. Do not remain nameless to yourself — it is too sad a way to be. Know your place in the world and evaluate yourself fairly, not in terms of the naïve ideals of your own youth, nor in terms of what you erroneously imagine your teacher's ideals are.”

“So even as he was making great strides, memorizing the expected answers and beginning to answer questions appropriately, I often wondered to myself, yes, he is learning how to "function," but is he really learning how to connect deeply, flexibly, authentically with others? Or are we just helping him to "get by," to "pass" more easily? Will he ever experience genuine intimacy? Will he ever be real?”