Sunday, September 11, 2011

Being there

It's been a hard week.

I've written before about my dad's Alzheimer's and about the beautiful relationship that he and Bud have. Both of these things have been weighing heavily on my mind this week.

My dad fell on Tuesday. He was alone in the yard when it happened, so we don't know the circumstances, don't know how hard the fall was, don't know how long he was down, don't know what he had to do to get up. An x-ray revealed that he had fractured a rib - a problem for which the only solution is time.

The first days after his fall were frightening, because, as often happens with Alzheimer's, the pain, or the pain medication, or both, transformed his dementia into delirium. When he slept, his sleep was fitful, his hands moving, his legs twitching, and his lips murmuring unintelligibly, but with purpose. When he woke up, he was bewildered and angry - he had things to do, he insisted, and we were keeping him from them.

His condition worsened, his pain so extreme that we were unable to move him. He ate very little. His speech was slow and muffled. His eyes were wild. I was afraid that we were - that Bud was - losing him completely.

The past 24 hours have been transformative, though. A visiting nurse and a home health aide have been in. My sister, my mom, and I have been joined by family friends with experience dealing with situations like this. My dad's pain is being managed. He is more mobile. His eyes are clearer. His dementia is less extreme, allowing him to spend longer stretches of time engaged with us and making his mental forays away briefer. It's clear, though, that we can't leave him unattended at all. Not right now. Maybe not ever again.

So, the big questions - the new realities - are still largely unknown and overwhelming, but for the first time in days, I find that I can exhale a little. I'm starting to reflect on the past week - a week during which I feel like I spent my time vacillating between two postures - flailing action and paralyzed inaction. I flailed my way through my life outside the house - tearing through my to-do lists without being able to prioritize in any meaningful way - applying quick-fix resolution to issues that really deserved more thoughtful consideration, and postponing action on mundane things that could have been more easily settled. And then, when I walked through the door to my house - saw my father in his bed, confronted his labored breathing, heard his muddled speech, looked into his wild eyes - my mind went blank. My to-do list vanished. I felt completely at a loss.

Things are better now, of course, but there is still so much that needs to be done, and I find myself struggling to fight paralysis without starting to flail. But it's hard to know what I should be doing. I feel like I should plan - but for what? for how long? with whom? Without knowing what we're really facing, it's hard to know where to put my energy.

My best cues, though - the most useful bits of wisdom I've gleaned in recent days - have come from the two sources I'd have thought most unlikely - the two people whose expertise I'd clearly underestimated most: Bud and my dad.

Because this week, while I stood looking at my father, trying to fight my paralysis, but feeling the panic rise within me, Bud brushed past me, ran to his grandfather's side, and greeted him joyfully, "Hey-a, Papa! How you doing?"

As I stood worrying about my father's hygiene, concerned about the time he'd laid still in bed, unkempt and unwashed, Bud clamored up beside his sleeping grandfather, nestled in, and said, "I love you soooooo much."

As my father slept and I walked aimlessly around the house wondering what I should be doing, Bud sat in the chair by his Papa's bed, matching Papa's labored breath with his own, slow breathing - his eyes closed, his ankles crossed, sharing the stillness.

As I made room for the professionals who came in to help my father sit, stand, walk, bathe, eat, and I found myself hovering on the periphery, unsure if I was staying on the sidelines for the sake of my father's privacy or because of my own discomfort, Bud settled himself in the center of the action, assuming the roles of both head coach and cheerleader. He sat across from Papa, his arms crossed, intently watching the nurses in action, and chiming in frequently with encouragement and support: "Papa, the nurse is going to give you a check-up and it WON'T. HURT. ONE. BIT," and "You're doing great, Papa!" and "I'm very proud of you."

As my father's color returned and his breathing normalized and he settled into an easy chair, I collapsed in on myself, focused on my own relief, but Bud sidled up to Papa, stroking his arms and patting his head.

And my father. My father. Even when things were at their worst - when his eyes were their wildest - when he seemed unsure of where he was, how he got there, and what in the world was happening to him - he consistently recognized Bud. When the rest of us could barely get a response from him, my father still brightened when Bud entered the room. The fog lifted temporarily and my father spoke more clearly than he had all day: "Hey, buddy. How was your day?"

Both my heart and my mind are still trying to process it all. But the messages, I think, are clear.

From Bud, the message is this: Be there for Papa. Stop focusing on who he was and on who you want him to be. See who he IS. Love who he is. Stop thinking and trying and pushing and planning and doing - and just BE with him. Be present to him. Just be there.

From my father, the message is this: Be there for Bud. Set aside your own confusion, forget your own fear, step outside your own pain, and be there for him. Stop trying to plan for, to warn about, to protect from, and just BE with him. Be present to him. Just be there.

And I'm trying. I'm trying to be there. I am. I have two extraordinary role models - two exceptional teachers.

I'm a slow learner.

But I'm trying.


I've been thinking a lot today about the post I wrote a year ago on September 11.  The messages in it are helpful to me today, as I confront the bittersweet realities in our lives right now.  I'm re-posting it here in its entirety and, like everyone else in the country today, I am remembering.

This post originally appeared at Hopeful Parents on September 11, 2010.

Some weeks ago, when I learned that I’d been assigned to write for Hopeful Parents on the eleventh day of every month, it occurred to me that I would be posting on the eleventh of September. September 11. I wondered how I would write an upbeat, positive post on such a tragic anniversary. To acknowledge the date would be somber; to ignore it, when I have been specifically designated THIS day to post, might seem disrespectful.

About a week ago, on a day when the stress of Bud’s transition to a new school year manifested in hard-to-manage behavior at home, it occurred to me that my posting date was fast approaching. I wondered how I would write an upbeat, positive post for Hopeful Parents when I was not feeling like a very hopeful parent. To acknowledge my frustration and self-doubt would be somber; to ignore it would be disrespectful to the mission of this site.

And that led me back to thinking about 9/11.

On that day, when the first plane hit the tower, Bud and I were dancing. We were in a Kindermusik class full of parents and toddlers. We were surrounded by baby laughs and mommy hugs, while hundreds of miles away, inconceivable tragedy was unfolding.

I think about those contrasting images often.

They are images that, through their contrast, capture my world view. It’s a world view that may have started to develop in my high school science class, because it seems to have its roots in Newtonian physics: To every action, there is an equal and opposite reaction.

In my own mind, it has become this: The universe seeks balance.

It’s a theme that plays out consistently in my life.

I look at pictures from Bud’s second birthday party, held four days after September 11, 2001. The faces on the adults are ashen, fixed in still-fresh shock and disbelief. And yet, there we were, gathered with joy, gathered in love, gathered because a two-year-old’s birthday mattered, despite the horror we were all still trying to process. We gathered to meet our grief with an equal and opposite reaction.

I think about Bud’s birth itself – the birth in which his twin brother was stillborn. I think about the hours and days that followed – hours and days of profound sadness, made livable - made powerfully joyful - by the healthy baby boy I held in my arms. Equal and opposite.

I think it’s the way that each of us processes the balance – the way we frame the moments and events in our lives that stand together in juxtaposition – that really defines our experience. I could, I suppose, reflect on my life and feel cheated - angry that the sorrow of x diminished the joy of y. Instead, I reflect on my life and feel fortunate - grateful that the joy of y sustained me through the sorrow of x.

So, I cling to my memories of the earliest moments of 9/11 - those moments in which something was stolen from us that we’ll never reclaim - and I remember the dancing. I remember the joy – and I believe that the people who were dancing, who were laughing, who were kissing, who were living with compassion and kindness at that first terrible moment of impact, created an equal and opposite force that kept us all moving forward, that allowed us to preserve something that can never be stolen.

It’s the same world view that keeps me moving forward through Bud’s darkest days of anxiety and aggression – because as challenging as his behavior can be, as powerless as I can feel in the face of it, I know without question that soon we will experience equal and opposite progress – equal and opposite joy.

The universe seeks balance. Better days are coming. And there’s nothing more hopeful than that.

Thursday, September 08, 2011

How to explain autism to children

I've gotten a lot of great feedback about the series of posts I wrote about talking to Bud's fourth grade class about autism.  The initial post - A Hairdryer Kid in a Toaster-Brained World - has been especially well-received.

I've also gotten feedback that the posts are difficult to find and that people stumble upon them after they Google something like "talking to kids about autism" and are directed through a circuitous route of posts that reference each other, until they land here.

So this is a housekeeping post.  The title should help bump it higher in the Google hit list and, therefore, help people find the blog more easily.  And if you've landed here because you've Googled something like "explaining autism to kids" or "helping children understand autism," then I encourage you to click here to read the whole series.

(And also:  Welcome!  Come back soon!  We also have a Facebook page...)