“Is There Anything Else We Should Know?” is the title and refrain in B. E. Pinkham’s essay that tells the story of moving her fourteen-year old autistic son to a group home. It was also the final question on the forms needed to convince the state that this move was necessary for everyone’s safety. What proof did she have, she asked herself, in the “blessed absence of blessed absence of police reports and emergency room records”?
Stories, was her answers:
But after years as an empowered and optimistic parent with a
reputation for maintaining a sense of humor, I resisted incarceration
in this Opposite Land where all of our good stories were “bad” and
all of our bad stories were “good.”
From later in the essay:
Is there anything else we should know?
Yes. After years of singing Yes, I can! filling out those forms became
my debut as a diva of No, I can’t. Of course, I’d written about
my experiences with Stuart before then, but always post-crisis, in the
glow of a victory. The hard truths were there, but those stories all
ended on the upsweep with at least some optimism and a whiff of
earned redemption. Now I had to renounce my faith in my ability to
care for my child in order to get the services he needed—an experience
another group home mother compared to a Christian being
forced to deny Christ.And I did it. I told on him; I gave evidence against my son.
The shame of that betrayal merged with the recognition
of the truth in those stories to keep my head pounding and my
stomach churning for five days.
Is there anything else we should know?
Yes. Of course I remember that day the previous summer on
the beach at the end of our street. My husband and I swimming with
our kids in Lake Michigan, and then warming ourselves on the sand.
It seemed just a little bit reckless to sit there together with Eve and
Stuart still out there, waist deep in the water. My husband, Arnell,
disagreed. Maybe he’s right, I thought, Stuart would never, even
inadvertently,do anything to endanger his little sister. He adores her.
But I stayed alert, watching Stuart’s every move, watching my
watchfulness, squinting through sunglasses as Arnell lay on his
towel. We’re like that: he’s optimistic about the present
moment—until something goes wrong—but pessimistic about our
future. I always assume we’ll all be okay in the lovely hazy future,
but what might happen right here, right now, freaks me out.
I watched them splash, playing. Stuart laughing. Eve dolphin-leaping
up and under. Both such strong swimmers. A plane razzed its
single engine at us, turning there just below Chicago’s northern border
to circle south again with its cell phone banner ad in tow. Somebody
kayaked past, beyond the buoys. Arnell wondered aloud if the
radio-controlled airplane we’d seen the previous week might return.
A jet ski howled away from the next beach south, zooming the kayak.
Then I saw Stuart’s broad back, trouser cleavage, and red bathing
suit as he dove under the water, but no Eve. The lifeguard on the
concrete jetty had only two others to watch but she saw a game—
nothing alarming. Eve’s arm surfaced then vanished. I slapped my
husband’s leg and stood for a better view. Her open mouth appeared,
her face sheeted in dark hair, but her brother’s hand on her neck
pulled her down.
“No! Stuart, stop!” The lifeguard looked at me, then him. They
were both under again. Eve is less than half Stuart’s size. He likes to
pretend we can all swim underwater like the seals, penguins, and
mermaids in his videos. He only wanted to watch her. He meant her
no harm. I started running. Arnell passed me. I was not afraid for
her life because we had plenty of time to save her—they were only
thirty feet from the beach—plenty of time to wonder if I’d been
stupid and callous.
Before Arnell’s swimsuit was wet, Eve popped up ten feet away
from her brother and kept going. I’d watched the beginning, the
middle, the end, felt no surprise. We had plenty of time.
Eve walked out of the water, head down, round shouldered.
She let me hug her with the towel. I told her she did the right thing,
and she was a strong girl to swim away like that, and I was sorry.
She nodded.“He didn’t mean to hurt you.”
“I know, Mom.”
Everything I could say to her on the beach was
already obvious, just the way it’s always been for us.
“That was scary. You okay?”
She nodded. I thought of her dead guinea pig and everything
I’d said then, and how forgiving she’d been as she cried, explaining to
me that Stuart didn’t understand what he did. This is what happens
when her parents foolishly pretend to have a normal family.
(The essay continues in the book.)
Pinkham’s family, including Stuart, adjusted to the transition and, to this reader’s great relief, she writes near the end of the essay, “we’re telling good stories again”. From Pinkham:
Stuart just turned 17 on February eighth. He’s a mostly happy guy, but still has a few rough tantrums every couple of weeks. His biggest pleasures when he’s home on weekends (besides Jello, toy trains, train videos, Sonic the Hedgehog and Wallace and Gromit) is his music. He rolls my desk chair in front of the stereo and cranks up the N’Sync, and then “It’s Raining Men” and then “Holding Out for a Hero”. He’ll spin and dance for a half hour or more, sometimes at six in the morning. Of course, the music drives his sister Eve nuts, but my husband and I are thinking about hanging a disco ball in our living room.
His longterm future is foremost in my mind these days. What will happen when he turns 22 and is no longer eligible for school district funding? The rate that our state pays to the group home agency will be less by then too because there’s a wildly mistaken bureaucratic assumption that adults are less expensive to care for than children. Illinois’s funding level for adults with developmental disabilities is 51st in the nation. (We’re even behind the District of Columbia.) It’s nearly impossible for an agency here to provide the level of care that my son will require for a decent life. Nearly! The people at his current agency are passionately working to expand their adult residential and vocational programing. We’re working and hoping with them to find additional funding sources, but if they can’t do it, our family will be forced to leave the state and the city we’ve loved for 29 years.
During the 1980s, B. E. Pinkham was an artist and earned all the fine art degrees she would ever want. During the 1990s, she was a landlord and acquired all the buildings and tenants that she would ever want. By 2000, she was a mother and had all the children she would ever want. Since then, she’s been writing. She hasn’t yet written everything she wants. Her work has appeared in Brain, Child Magazine. She is seeking a publisher for her memoir, Let Me Look at You, in which autism plays a shockingly minor role.



