by Kristen -

Good Enough

The day before she planned to board a plane to Chicago for Christmas, my sister-in-law tripped on the stairs of her home, tumbling all the way to bottom.  Fortunately, she was able to call a neighbor, who drove her to the hospital, where doctors diagnosed a nasty concussion and badly sprained ankle.

Advised not to fly for at least a week, she spent the holiday alone, half a country away from the family who loved her.  It was not the annual reunion any of us had hoped for.

It could have been so much worse, of course, as we told ourselves repeatedly over the next few days.  Living alone, she may have lain unconscious for hours before someone found her.  She could have been permanently injured, even killed.  The possibilities don’t bear thinking of.

She was, in fact, lucky.  Yet luck is a relative term.

I’ve struggled with this kind of contradiction often since my son’s diagnosis, seeking the bright side, the countless positives in Daniel’s life to counter the implacable weight of autism.  These self-imposed pep talks seldom evoke the level of gratitude I believe I should feel, however, or appreciation for the grace I’ve been granted, again and again.  How often have I told myself that what I have, what my son has, should be enough, even as my self-pity shouts me down: “Of course it could be worse!  Of course it could!  But it’s bad enough as it is!”

Slowly, though, I’m emerging from this kind of wallowing.  This past Christmas I realized that, perhaps, I’m making some progress after all.  And I don’t know how I feel about that.  It’s taken me weeks to wrestle my emotions into cohesion.

We brought Daniel home for a day visit on Christmas Eve, an excursion we haven’t attempted in several years.  It’s easier on everyone, including him, to simply celebrate at his group home in Wisconsin, rather than tempt the erratic behavior that makes his living there necessary with transitions back and forth from the environment he’s grown accustomed to over the years.

This year, however, I decided to try again.

The holiday season is not particularly joyful for me, and despite my grim resolve each year to make it so, over the last decade it’s become a period to be endured rather than savored.  Exceptional work demands at the close of last year had me more anxious than ever, and a wise friend urged me to set aside, just this once, a few of the traditions I’ve felt duty bound to maintain, even as they brought more stress than satisfaction.  I tried to take her advice.  Christmas 2016, for instance, marked the first year since my children were born that I didn’t include their photo with my Christmas cards.  And what do you know?  The world survived, just fine.

Maybe this frame of mind helped ratchet down my expectations for Daniel’s visit, let go just a bit of my perfectionism and take the day as it came.  It didn’t have to be perfect; almost certainly it wouldn’t be.  And indeed, it wasn’t.

My Facebook post that afternoon painted an idyllic portrait of family togetherness, drawing supportive comments from my circle of friends.  My daughter, her boyfriend, and their enchanting puppy were home as well; we dined at Denny’s, Daniel’s favorite restaurant, and exchanged gifts around a glowing Christmas tree.

Pictures rarely tell the whole story, of course.

I’d planned to give Daniel his Christmas stocking, bulging with favored treats, before leaving for lunch, but he showed little interest, leaping from the sofa and pointing to the door — “Denneh?  Denneh?” — again and again until we tossed the stocking aside in resignation.

At the restaurant he was allowed soda to his heart’s content, but this did nothing to slake his obsession with the beverage, demanding more as soon as we got back in the car.  Nine years after leaving Illinois, he still remembers the precise location of the grocery store nearest our house, and pointed in its direction as we drove quickly home, praying he wouldn’t wet his pants before we got there, a very real possibility due to his public bathroom aversion.

Back in the living room once again, we tried enticing him with the mountain of merrily wrapped gifts assembled under the tree. He was having none of it.  “Stoar?  Stoar?”  His requests became more belligerent as I tried coaxing him with a sticker book, my well-stocked refrigerator sadly lacking the 16-ounce bottle he apparently had in mind.

“Stoar!”

One photo I posted on Facebook was especially popular, my once-little boy now towering over me, hands on my shoulders, looking deeply into my eyes as I smiled up at him with joy.  It elicited tender comments from far and wide.

“I can see the love in this picture!”

“You are his world!”

“This picture says so much!”

It said plenty, all right.  It said our whole happy Christmas visit had been hijacked by Daniel’s unremitting obsession; that I was desperate for the holiday’s magic to break the vicious hold of autism for just one day.  That as that photo was snapped, he’d just released my chin after pulling my face to his, laser-focusing as he repeated, again and again, “Stoar?  Stoar?  Stoar?”

We gave in.  Armed with a bottle of Coke Zero chosen from the gas station minimart, Daniel finally relaxed, giggling, posing for photos, enjoying time with his family before Andy drove him, happy and willing, back to his Wisconsin home.

It was an exhausting afternoon, another celebration driven by the disorder that has dictated the course of our lives.  But while the day failed to unfold as smoothly as I had hoped, it didn’t crush me as some past Christmas ordeals have done.

I don’t know why this was so.  Was it because my daughter was so obviously happy, or that her boyfriend touched me so deeply with his maturity, his affection and respect for his girlfriend’s special brother?  Was it the joy of their dog Mattie’s exuberance, the fun of having a puppy in the house?  Was it that we made it through lunch at a restaurant without incident, no hapless diner’s soda wrenched from their unsuspecting hands?

Did the positive, this time, simply outweigh the negative?

I can hardly believe it’s that easy, because I don’t do simple very well.  Separating my feelings around Daniel’s disability from the rest of my life is an ongoing challenge; his autism colors everything in my world.  With Daniel’s struggles so blatantly on display, enjoying a festive holiday feels like a betrayal, acceptance a sell out to my own longing for harmony, for normalcy, for simple. Daniel’s reality is my own, and conceding that it is good enough is defeat, like giving up on a Christmas photo.

A mere bottle of soda satisfied my son, but that wasn’t the way I wanted it: I wanted my will for Daniel to prove stronger than his fixation, than his disorder itself.  That kind of transformation doesn’t happen very often with autism.  I know this by now.  I still hope for it, though, unwilling to accept circumstances as they are because they could be, should be, so much better.

Yet this year I felt the grace of truth more powerfully: those circumstances could be worse.

And I hold these truths now as well: Daniel’s smile as he ran from Andy’s car to our back door, beaming, eager to be home again; his delight as Mattie pranced on his bed, licking his hands and face while I tightened his shoelaces and brushed back his hair.  His careful examination of the tree ornaments, touching, tapping, as he did when he was a boy.  His willingness to return at the end of the day to the life he knows now and embraces, untroubled, secure in our bond and our love.

For a few hours on Christmas our family was together.  Imperfect, stumbling, winging it, but together.

And this time — dare I say it? — that was good enough.

by Kristen -

Denny’s: A Love Story

Denny's

Several years ago, the former pastor of the church I worked for sent me an email a few days before Christmas, and we exchanged brief updates on our lives and plans for the holidays.

Chris and his family were going skiing in Michigan the week before New Year’s; I reported that Daniel would be home for the day on Christmas Eve, and we had our own big plans: dining at Denny’s, his favorite restaurant.

Apparently our upcoming yuletide celebration sparked an idea for the Christmas Eve sermon Chris was pondering for the new church he’d founded in Chicago. He hoped to illustrate the Magi’s likely bewilderment upon finding the humble manger, when they had anticipated grander surroundings befitting an infant king. He wondered if my feelings about going to Denny’s for Christmas perhaps echoed those muted expectations.

As it happened, I’d just learned that a letter I’d sent to the Chicago Tribune would be published on the 26th, and I sent Chris a copy of the text. In it, I described my adjustment to simpler holiday traditions, the gradual lessening of expectations as autism changed our lives.

Chris’s sermon was well-received, he told me later, my story of Christmas at Denny’s the hook he’d been seeking to hold his message together.

For years when he lived with us, visits to Denny’s were a high point for my son. We loved it too, as the franchise near our home was never too crowded to find a booth in which to ensconce Daniel while he waited, impatiently, for the meal he always ordered.

I remember in particular a Saturday evening shortly after Daniel’s twelfth birthday. His sister Natalie had her own life by then, rarely stuck with her parents on a weekend except under the most dismal of social circumstances. So it was just the three of us, Daniel anchored between Andy and me in a spacious, semi-circular booth, his eyes glued to the swing door that led to the kitchen across the dining room. Despite his elation at being there, he remained watchful: the food had not yet arrived.

A paper kid’s placemat lay in front him, on which he sporadically scribbled, when prompted, with the worn crayons provided by management to keep children occupied until their meals were served.

There was no distracting Daniel, though. Repeated assurances that his food would come soon didn’t cut it. I sensed him trying to relax, to trust us and his own previous experience, that his coveted “Sampler Platter” with a side of fries was forthcoming. Yet every minute or so he’d ask again for his food, tapping the laminated menu for emphasis.

“Frah? Cheh? Chica?”

And at last the Sampler Platter appeared, a heaping, monochromatic mound of fried mozzarella sticks, chicken fingers and onion rings, augmented by a plate of French fries. As it emerged from the kitchen he sat straight in his seat, his gaze riveted on the server’s progress toward our table, reaching for a fry before she had set the plate in front of him.

In moments his mood changed as he let his guard down at last. Only then could he truly enjoy the experience, smiling and chuckling while plowing through each delicious, deep-fried morsel, gulping his soda between bites.

That night seems like a lifetime ago, when hope still glimmered for at least a semblance of the normal life we dreamed of for our son. We’d recently begun tentative exploration of the scant, unappealing choices offered by our state for adults with disabilities, advised by transition specialists that it was never too early to begin preparing for this possibility.

But in 2004 nothing yet had been etched in stone; we were several years from the bleak December day we moved Daniel to residential care. He was still young, adaptable, impressionable. Dramatic, life-altering change was still possible, with maturity, continued therapy, the eleventh-hour intercession of God. It was possible.

Wasn’t it?

I still see him that night, his anxious face reflecting concern carried, unspoken, for a lifetime; that his simple request, finally discerned among so many unarticulated, misunderstood desires, would yet be denied him.

And once the food came, his worry allayed, he relished his modest treat, a meal of his choosing, oblivious to the world beyond the walls of the restaurant: the world of sports and video games, of roughhousing with peers or movies with fledgling boys whose voices were changing, a world of first, tentative contact with girls, a world of moving forward.

Is this what life holds for my son, I thought, the bright spot of his days eating at Denny’s with his parents on a Saturday night? This isn’t forever; it simply can’t be. This can’t be what God has in mind for my son, my beautiful, bright child. There must be more for him one day…

I didn’t realize that one day even Denny’s would be out of reach, that the disorder that limited his focus to a platter of fried food would render even that pleasure unattainable.

It’s been a year and a half since we took Daniel into a restaurant, even a fast food venue. Past incidents of upset and aggression haunt me. I don’t care if he hurts me; I’ve survived that before. I fear him hurting another, an unsuspecting stranger, standing in the way of the obsessions that seem to drive him now where food and beverage are concerned.

The team at his group home have taken him into eateries for over a year, McDonalds, Panera, Olive Garden. We’ve joined them there, amazed and encouraged by Daniel’s demonstration of acceptable behavior when monitored by professional caregivers. His case manager hasn’t encouraged us to try this ourselves, however, cautioning that Daniel must learn new patterns, breaking rituals and expectations formed over years of parent-child interaction.

Yet increasingly these last few months, I knew we needed to try. Andy and I chose mid-morning last Friday to give it a go.

We stopped at a Denny’s a few miles from Daniel’s group home before picking him up, finding it more crowded than the one back home. A few booths were unoccupied, however, and I asked the manager to hold one for 20 minutes until we returned with our autistic son. He didn’t seem particularly enthusiastic, but a booth remained vacant when we returned. Flanking him on either side, Andy’s finger hooked in Daniel’s belt loop, we walked quickly through the parking lot and into the waiting booth.

We must have looked odd, hustling our 6’1’’ son through the restaurant. Andy suggested I relax just a bit, that we needn’t behave like prison wardens escorting a convict to his cell. My heart pounded, though, the tension I intended to conceal thrumming off me in waves, the limitless calamities Denny’s held in store streaming like ticker tape through my mind.

Our booth ran parallel to the galley where orders were dispensed and the soda fountains were housed. Daniel craned his neck to get a better view, and I flashed on the image of him leaping over the partition, a maneuver of which he is entirely capable.

“I can’t believe it’s come to this,” I remarked mournfully, once we’d settled, a sticker book replacing the kid’s placemat on the table now. Andy remained calm, though, despite my anxiety, despite Daniel’s repeated demands for pop and restless gestures toward the kitchen. He covered my hand reassuringly. “Relax, hon. We’re doing fine.”

And then the beloved Sampler Platter arrived, complete with a side of fries. And Daniel relaxed, just as he used to do, wolfing down his food in customary fashion before we could change our minds. By the end of the meal he was beaming, giggling, encouraging our tickles, just as he did as a boy.

It was a tense outing. But it was a beginning, a return to a pleasure once enjoyed.

My son’s life now bears little resemblance to the life once hoped for, yet I recognize that those hopes, those expectations, were my own. I wish more than anything that I knew what Daniel hopes for, what dreams he holds dear, what experience he longs for.

Yet he remembers Denny’s. It holds meaning for reasons I may never fully understand. But he still loves it there.

Would he have been just as happy with his caregiver by his side? Maybe.

I think he remembers, though, that this experience, this treat, is part of our life, together.