Remembering Sandy

IMG_0095It’s been a year since I received the call that would break my heart.   I saw it coming.   My sweet “little sister,” Sandy Masor Zimmerman, the one who married my cousin Harry who in truth was always more like a brother, had died.

Her illness was unforgiving and in the span of a few short months, she went from being the always optimistic, sunny, fun  redhead we knew and loved, to someone beat up by a cruel illness.

She left behind her husband and two boys, Evan and Zack, and her brother Harold  and his wife Amy, along with many nieces nephews and cousins.

When I visited her in Los Angeles, she spent a lot of time sleeping. I’d walk around the house, looking at the many photographs that told her story.  Most were of her with the people she loved most, her husband and two teenage boys, redheads like her. There were framed black and white photos of her deceased parents, and her one brother as a child, and later with his wife and children. Bookshelves were crowded with photo albums, catalogued with numbers and dates, a visual narrative of a past for a woman who was fighting for her future.  Sandy’s presence was everywhere.

The platter of needle pointed mini pastries, textured and beaded, sat on the kitchen table, a wink to her weight watching ways.  Cash coupons, rewards for accruing credit card points, were hung from her cupboard. Shopping was her sport and bags filled with sale items from A list stores was to her, a personal triumph. Sandy studied genealogy, and after years of painstaking research into the histories of her and her husband’s families, she had her findings bound into leather volumes.  Sadly much of the book was taken up with stories and documents about the Holocaust.

Sandy loved all things Jewish, and was a great supporter and lover of Israel.  She led campaigns to raise money for many causes in Israel and encouraged her sons to spend time in the Holy Land.

This year, after we celebrate the Passover holiday together, members of our family will travel to Poland together to retrace many of the steps she wrote about in her book.  We will commemorate what must never be forgotten and then travel to Israel.    There is comfort in knowing that this is something that would make her smile.

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OREOS – A New Currency

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Jonah lumbers in unsteadily, using the tips of his fingers to carry a 32 sports bottle tray of water by its shrink wrap.   At first glance he looks like any other six foot two, 30-year old delivery person.   But he is accompanied by a woman who prompts him every step of the way.

“Here Jonah,” she says pointing to the space I had cleared in the garage. “Put it here.”   It’s a good day and he listens.

I give him a hug, after all I am his mom, and invite him in for the non-monetary tip he knows to expect —   Oreos.  Cookies.  Now that’s a language Jonah understands.

Jonah is non-verbal, requires 24/7 supervision, and has no attention span or impulse control.  He has severe autism and even in the best economy hasn’t been able to handle a job— not that we haven’t tried.   Still I don’t know that I can blame him for running away from every paper shredder and hanger sorter he has been handed.

Throughout the years we tried our best to think “outside the box,” to be honest about who Jonah was and what he was capable of doing.   And though we worked hard to encourage use of language, interaction and independence, the gains he made, modest at best, often left us feeling like we were banging our heads against the wall.

At one point we talked about starting a farm cooperative perhaps in partnership with one of Michigan’s many universities. Jonah likes animals and being physically active, especially outdoors.  Staff could be drawn from students interested in special education, psychology, social work, various therapeutic fields. Agricultural students could run the farm while business students could manage the accounting end of things.  But when I proposed the idea to the administrators who oversee such decisions, I was told, “the days of funny farms are over.” By that time, having doors slammed in my face had become old hat.    

As Jonah approached his 18th birthday we struggled but eventually set up for him, a  good long-term living situation with fitting roommates and responsible caregivers.  That he lives less than a mile from our home didn’t hurt matters.

Still there were 16-hour days to fill, no small challenge considering that Jonah is a shoot from the hip young man who does what he wants, not what he is told.   Work programs rightly consider him “too high maintenance” for hire, and day programs, while willing to take him, remain depressing warehousing affairs.  What could we do? 

One afternoon as I was loading heavy cases of bottled water into my car, I thought of my able-bodied Ashton Kutcher look-a-like son. If I hated lugging bottles in and out of my trunk, certainly there had to be others who felt the same way.  What if Jonah and his aide, the one he is always required to have, delivered trays of water bottles to homes and offices?

Jonah is a longstanding devotee of warehouse clubs with their free food samples and aisles of items he loves to look at in food magazines and catalogues. Heavy lifting is often considered therapeutic for people with the kind of sensory issues Jonah has, and besides water bottles being unbreakable, they are rarely urgently needed, an accommodation that would be helpful on Jonah’s occasional “bad days.”

“We could do this,” I told my husband.

I put up a website, made cards and hung posters accruing a list of 35 customers, many of them friends and neighbors. All really do appreciate the service Jonah provides. The money he makes in tips, which is negligible after paying for gas and mileage, is almost beside the point.  He is busy doing something purposeful within the community, becoming reacquainted with people who haven’t seen him in years.

Nothing is perfect.  So many variables go into shaping a life and Jonah’s story is his alone. But despite the skyrocketing autism statistics, the advantage he and others of his generation have, is that they are being raised in parental homes with families who can have a hand in staging improved futures. 

Even today, it is hard to look at Jonah and not wonder what he might have become, as a person, husband, father, and professional. But at 29, I see, a reasonably happy and content young man munching on an Oreo, and am grateful for the perfect compensation we have figured out for his little bit of a job.