Susan Senator: A place to call home

A place to call home

The Jewish Advocate, April 22, 2011

When I was growing up, my mom used to tell me about Israel, that its existence was utterly necessary after the Holocaust. This Zionist view is what I was raised with, for better or worse. You may disagree — and I appreciate the difficulty of the Palestinians’ plight — but that is not the point here. The point is how I’ve always believed in this kind of security for my people, because of their multi-millennial history of expulsion and wandering. “Now the Jews have a home,” my mother said — her voice rough with emotion.

These conversations occurred in childhood, of course — way before I had a child of my own. Nat is my oldest son, and his severe autism has brought with it deep seismic shifts in what I thought my life would be and what it actually is. With autism, I have found the good and the bad are inextricably linked together: one step forward, one step back, so to speak. As he has grown up, I am still at times surprised and caught off guard by the volatility of life with Nat: a sudden return to aggressive, self-injurious behavior and acute anxiety; an apparent retreat from us yet one accompanied by a new shining ability to hold five part-time jobs. And, most startling and poignant of all: Nat’s emerging independence.

Nat, as a young man, is able to express his frustrations and needs — albeit with the pieced-together language of a toddler or an immigrant. This achievement feels like the greatest of miracles, as clear a blessing as there ever was. He tells us, “Nat go Social Group,” right when it is, indeed, time to leave for his Friday night Parks and Rec get-togethers with others who have similar challenges. And he leaps out of my car to get to them, gigantic grin on his face, high-fives all around. He is a young man with autism, and yet he lives for his nights out with his friends. All of these skills — work, social life, self-control, communication — come from his education and a lifetime surrounded by people who believed he could achieve. And the right supports.

Now 21, we face the question of what Nat will do with his adult life. Once he turns 22, Nat will no longer be in the public school system and will, in effect, be on his own. Although we are relatively young parents and our home is big enough for all three of my nearly grown sons, our ability to give Nat the structure he needs — were he to live at home — is sorely limited. Without the carefully delineated calendar of his school days, Nat starts to wander, literally, in circles around the house, and within his mind, untethered, profoundly uncomfortable and unproductive.

And so I’ve begun to wander a bit myself, making forays into the world of adult services, like I once did with children’s services. The complexity of the adult services system, however, has been like taking on a new job, or going back to college. I find myself suddenly attending mind-numbing workshops and conferences on Medicaid, Social Security and support service providers. At a time in life when most parents can sit back and watch their children go off to college and make their own way, I have had to set out on a search that is arduous and uphill most of the way. And yet I have begun to make sense of it, and to piece together a vision for Nat’s future. I now have a grasp of the federal and state programs out there that can help make this happen.

My dream is of Nat living nearby, in an apartment with three other young men similar to him, and a shared caregiver. I see him taking the T with his housemates to work, to movies, to dinners out, just like he does now on Friday nights. He will live in the real world, not sit facing the walls of his childhood bedroom. And I think I know how to make that happen: through the social programs provided by this great country of ours.

And today as I sit in my dining room, safe from the lingering cold of early spring, I am tired from my journey as Nat’s mom, but I feel a sense of warmth inside. I feel gratitude that I live in a country where we are, indeed our brother’s keeper, where we have the programs our most vulnerable people need — though they are extremely difficult to find and understand. Where Nat will always have a home, a place for him to grow, and to live, safe and happy — even after I am gone.