Category Archives: Autism

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Before I even started this blog, I wrote a few pieces for an online publication called catapult. The thoughtful themes and diversity of voices was an appealing place to begin writing for a broader audience.

Topology is a brand new magazine from the folks who used to put out catapult and they are running a few “throwback” pieces from the old magazine this fall.

This month they are featuring a piece I wrote in 2013 about living on the margins as a family dealing with autism. I hope you’ll click over and take a look.

Dreams and anxiety

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Last night was one of those 3:30am nights. Awake, mind already racing at full speed, rehearsing, rehashing. I hate those nights.

I usually sleep well so when I don’t it feels especially abrupt and intrusive and disorienting. And it sometimes means maybe, just maybe, I need some decompression and download time I’m not giving myself, so my mind takes over in my sleep when my defenses are down. I was up for a while, trying to breathe and listen to my rain sounds app, then, when that didn’t work, trying to zone out to the background of familiar Friends episodes until a fitful, anxiety-dream-filled sleep set in from about 5:30-8am.

When I told my husband about the stew of dreams that rushed in during that time, he said I managed to include every major anxiety-inducing situation. Why, yes, I did. One dream included our home’s roof leaking in two places, the discovery that a small child used one of our vases as a toilet, and realizing after lounging unshowered in my pjs all day that I had one hour to be dressed and at a wedding. I made it to the wedding in question, where I was not the clergyperson presiding but where I was supposed to pray before a meal. I stumbled as I started the prayer, stopped myself, and said, “I’m just going to start over.” Then, as I gathered my thoughts in a moment of silence and was about to open my mouth to try again, the clergyperson I didn’t know who was officiating the wedding – Generic Priest Collar Dude – jumped in and just slapped out the prayer himself.

Luckily, my husband had the coffee ready when I woke up.

My autistic stepson Blair sometimes has trouble sleeping straight through the night so I’ve taken to gently telling him, when he comes for his good night hug right before bed, I hope you have a good, long sleep. I hope you have beautiful dreams and you rest and sleep all the way until morning when it’s time for everyone to wake up. And in the morning, we’ll say “Good morning!” and give you another hug.

Even when I know things have built up and I need decompression and meditation, I’m not as good at saying similar things to myself. Today, as the dreams recede, I’m hoping a swim in the sun and the space of an afternoon off can help where words seem lacking.

 

Who Wants to Pray?

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People in my profession get asked to pray a lot.  Many times, there isn’t even any asking going on – it’s simply assumed the pastor is the one who prays.  When one of us pastor types goes off script and cheerfully offers for one of the other Christians in the group to have the honor, uncomfortable silence ensues.  “Who feels called to offer a blessing for this meal?”   Crickets.

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I can’t blame the non-pastor types.  It can be intimidating to be The One who announces through prayer – through what gets prayed for and what does not – where our collective focus lies and where we especially hope for the signs and wonders of God’s presence.  Since, in many faith communities, pastors are the only ones who ever have the opportunity to pray, it can send the message that you need special training or voice intonation or secret knowledge about the “right” things to say.

A couple of weekends ago I got to be one of the listeners as a group prayed together.  We took my stepson to a wonderful surf camp offered by Surfer’s Healing.  I’ve written about them before and the overwhelming nature of standing on a beach together watching our children go out to sea without us.  This year I was teary and moved again.  I found myself standing at the shoreline with gripped hands at my chest – almost in a prayer position – holding my breath, watching him work on trusting the surfers enough to go where they led.

It was breathtaking and comforting again to move through this “one perfect day” together, rehearsing the hard letting go of parents.  But what struck me this time was the ritual of beginning the day.

Once the surfboards are unpacked and lined up at the shore, the beach area roped off, and the registration tables up and running, the event organizers gather everyone.  Logistical announcements and thank you’s are issued and then Izzy Paskowitz, the founder of Surfer’s Healing (along with his wife, Danielle), says a few words.

He and the other surfers all wear wetsuits and stand together in a line at the front of the gathering.  Izzy talks about the “club none of us wanted to be in” as parents of autistic children and he talks about the generosity of sponsors and volunteers.  Then he calls on one of the other surfers to come offer the first of several prayers before embarking on the day.  We hear a prayer in English then a second surfer takes the mic and offers one in Spanish.  Then a third surfer comes forward and sings a traditional Hawaiian prayer to the tune of the doxology.

When we first got to the beach I saw the surfers in wetsuits and felt some competing combination of being a geeky teenager around the cool kids and being an old mom.  Each of them is young, many are tattooed, and they look sleek and muscular in their second skins.  If I let my own high school experiences or movies clichés take over my thinking, they appear to me as a group of untouchably cool dudes.

But I look at them as we are praying.  Every last one of them is holding hands with the surfers next to him, heads bowed.  No one looks impatient, bored, or uncomfortable.  I don’t get the feeling from any of them or from the crowd at large that this part of the day is imposed or strange or old-fashioned or constricting.

They do this every day of camp all season long.  Before heading into rough waters with autistic children they’ve never seen before this moment, they pause and pray.  As they gather their strength, stamina, patience, and hopes for a rough and rewarding day, they recognize their intentions and ask for God’s blessings on the camp.  There was nothing showy about any of the prayers or the fact of praying together before beginning.  I only consciously understood the words of the English prayer but I’ll go out on a limb and say none of the prayers were self-conscious or full of buzzwords.  They were simple, short, in and of the moment, heartfelt.

I was completely taken aback and had to wipe tears from my eyes during the prayers.  The sight of the cool dudes, long hair flying in the wind, holding hands and praying on the beach got me choked up.  It was the opposite of what many of us experience in church – or what we are afraid will happen when we pray together in church, especially if one of the “non-professionals” offers the prayer.

That day on the beach, I began wondering about how we are teaching people to pray in context.  For those of us who are asked/assumed to pray, how can we model praying so it’s an invitation to others to do the same?  It seems to me that many times in the church we gather to offer prayers and ask God’s blessings on a meal or a service trip but our humility is hidden under slick phrasing or a tone-of-voice assumption that the prayer is a “lock on it” rather than the start of it.

What I experienced on the beach was a group of consummate professionals vulnerable enough to hold hands and remember the One who makes all days gifts.  How can we professional pray-ers model this spirit and invite the non-professionals to the mic?  What would this look like at tax time in an accountant’s office?  In a writer’s room?  Before surgery in an operating room?

I need to hear more prayers from the trenches, raised up from wherever by whomever, stating the simple but obvious truth and need of our lives.  This matters and we give it to you – the success and the difficulty of it – and ask your blessing.  We know you’re here.  Thank God.

 

Epiphany on the Shore

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When I got married at 40 I also became stepmom to a 19 year-old with autism.  By the time we became a family, I had finally started feeling proud of my single self for putting some money into my retirement account each month.  That’s where I was with planning for the future – and I thought it was pretty good, all things considered.  Then I became one of the autism parenting team. 

In the time I’ve been his stepmom, he has graduated from the school he attended and – as with many times before – paved the way for those behind him, this time as one of the first in the fledgling adult day care program.  It’s a wonderful program and he’s contented there. 

surfers healing at va beach

Click the picture for a great short video about Surfers Healing.

And we still don’t know what’s next.  I spend more time than I probably should worried about it.  My meager retirement-savings-for-one – even when coupled with my husband’s – are even more meager when expected to last another lifetime for someone who will never work or live on his own.  And that’s just the money.  I also worry about how and where he will live and who will take care of him.

I’ve known for a while now the worry is not good and does no good.  But it’s hard to stop. 

Then we went to the beach for the day.

We had one of those coveted spots at a Surfers Healing camp this summer.  Surfers Healing is a non-profit founded by Izzy and Danielle Paskowitz after discovering the calming effects of surfing on their son who has autism.  A former competitive surfer, Izzy recruits other pro surfers to take children – hundreds at each camp – surfing.  They are expert surfers and amazing people who interact so beautifully with the kids and adults with autism. 

My stepson loves the beach so he didn’t take any convincing to go.  I wasn’t sure what his reaction to surfing would be, though we rehearsed the story with him the whole day before and on the long ride there.  He can swim and they put everyone in life jackets before they get anywhere near the ocean’s edge.  So I wasn’t worried about him.  I was happy we could take the time and make the trip.  I wanted him to have the experience and I thought he’d be the one gaining healing and calm that day.  The only one.

I was wrong.

The surfers walked with him down to the shoreline and demonstrated how to lay stomach-down on the board.  Three of them steadied the surf board and accompanied him out to sea.  As they bobbed their way out, away from us, I was overcome with emotion and tears.  I was not expecting this.  I stood there in the wind, watching these kind surfers take him some place I couldn’t go and yet I knew he was still completely safe.

It was relief I felt.  And it flooded me with tears.  Standing there, I felt the weight of the worry I have been carrying since I came into his life.  I recognized my biggest worry by far is who will take care of him after we are all gone. 

I know it won’t be those surfers we met that day.  But the gift of watching them surround him on the board and go with him into the waves was the gut-level certainty that someone could and would.  It was like a trial run, handing him over to others who can take care of him and handle his quirks and his beauty.  It was the most unexpected gift and relief-drenched glimpse of what can come next.

I didn’t go to the beach for my own healing that day.  I never even got in the water, but I’m ready to go back next year and stand on the shore again.  Rehearse the relief.  Receive the gift of community.  Allow healing.  Look ahead into the choppy waters with hope.

Travelers

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sign post along the path reads "difficult path - impassable after heavy rain"I traveled solo for a long time.   Single, with friends and family all over the globe and a love of the road, meant I developed habits to keep me safe, on schedule, traveling light, and unnoticed.

I am the kind of person who is ready to de-plane well before we pull up to the gate.  When we get there, I am standing in the aisle, meticulously organized and ready to walk, waiting behind the person who can’t remember where he put his scarf when he sat down.  I am the kind of person who checks her tickets and writes down emergency numbers.  I try hard to sleep on the transatlantic flights because when I get to London alone and still have a couple of hours to go until I arrive at my friends’ house, I need to be alert and quick and get on the right train without calling attention to myself, the solo American.

When I left to study abroad in France during college, the USA was in the midst of a spat with France over air rights and Libya.  France started requiring visas and word went out that Americans should keep a low profile.  Experienced fellow ex-pats assured me that passing for Canadian would be the way to go if the going got tough.  I took it to heart and tried to blend in.  Or at least not stand out as American right away.

I read Rick Steves and pared down what I considered necessary for a 2 week visit.  Traveling alone means that it all has to fit on my person or in my hands.  God forbid, I ever end up somewhere looking for a trolley that I still can’t push because of the mountain of suitcases I’ve brought.

Backpacking also contributed to my thoughtful, scant packing skills, honed further on my many treks into the Smokies.  If you’re headed out into the woods for a few days, everything you take has to be useful and absolutely necessary, and fit in your pack.

Later, when I started taking trips with friends who, according to me, packed too much, I felt superior.  Streamlined.  In the know.  I was the svelte and efficient traveler who didn’t need help to manage my bags and no one was waiting on me.

I have people waiting on me now – husband and son and a passel of students.  And I do a lot of waiting on them.   I’m working on the superiority thing.

No matter how many advance packing lists we devise or how little room our caravan of cars has, students always show up for mission trips with too much luggage and big, gangly, sloppy sleeping bags spilling out of their ties.  The guitar always ends up on top of everything else in the back of my car, leaving just a sliver of rear view left in my mirror.  We never move through an airport or a restaurant or a town square without being noticed, all 25 or more of us laughing and talking loudly over top of one another, clearly “not from around here.”

When I travel with my family people usually notice as soon as we get out of the car.  My stepson has autism and needs to jump up and down and make a lot of noise.  Absolutely not an incognito experience, making a pit stop or a visit to Starbucks.  Things take longer with him and he is not generally interested in whatever schedule we have in mind.  As my husband says, “He can wait you out.  He has all the time in the world.”

During seasons like Advent and Lent, I tend to lean on journey images…  Making the Advent pilgrimage to Christmas.  Clearing space in our lives and hearts for God to show up along the paths we travel.  Allowing ourselves to be surprised by the turns in the road…  And, though, I can’t claim this was part of my solo traveling ethos, it does seem that the less baggage we lug into the season the more open our hands and hearts are for what God wants to give.

The thing is, God gives us what we need, but rarely expect.  Apparently I needed a noisy, jubilant, jumping son and a crowd of witnesses who are still learning to pack lightly.  I know I needed my traveling partner husband (who’s not half bad at packing, by the way).  Perhaps my solo traveling habits weren’t formed for my own speed and convenience but so that my hands and my life would be open enough to lend a hand to my fellow travelers with the huge, toppling trolleys.

I love knowing I can get myself around the world solo.  I love remembering those times and adventures.  But the adventures I am having now are wearing away at my rough edges.  Almost none of my trips are solo any more but I love the company.

Yielding

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(This was originally published in the 4/8/11 issue of catapult magazine.)

When Lisa told me she was learning to yield it was the most honest description of becoming a parent I had ever heard.  She was a new mother and we were sitting in her study, books everywhere, windows overlooking the yard, glass doors to close when needed.  It was nap time and we were there with the doors open, in case her son woke up.  We spoke quietly about how she was making way in her life and how she still craved thoughtful solitary times, even as she learned to yield to the new contours of her calling as a mother.

I understood something about yielding then.  I was finally answering God’s persistent call for me, making my way towards ordination after a roundabout and wandering journey.  The unsettled acceptance Lisa described seemed familiar and I hoped to remember her experience when I had children.

A few years later, the year I turned 40, I married the love of my life.  In a garden with geese honking as they flew by overhead, we were married and I became the stepmother of an 18-year-old with autism.  Absolutely perfect — and not at all how or when I thought marriage and motherhood would happen in my life.

A year and a half into our marriage we decided not to have a baby.  I was 42 and Woody was 54.  Blair was 20.  I knew about the tendency of autism to run in families and the increased likelihood of older parents to have a child with autism.  We already had concerns about managing Blair’s lifelong care and we knew autism isn’t the only concern for parents our age.  One day, with strange and sudden clarity I said to myself, “I have no business trying to get pregnant.”  Then I said it to my husband and cried.

I still wanted it.  I still want it, sometimes more than others.  My next door neighbors’ darling girls, the adorable Lily on Modern Family, and my own Goddaughter awaken a deep and still-present urge to have a baby with Woody, to raise a child from birth, to mother a girl.

But for me it has ended up not to be entirely about wanting.  Though I experienced a moment of clarity and made a decision, I am uncomfortable saying, “We decided not to have children.”  It felt less like a decision and more like yielding.  Yielding is about recognition, somehow, like turning around a bend to see familiar terrain or looking up from a book and into the face of your beloved.  There you are and you acquiesce to keep going in that direction.

Woody talks about an earlier time in Blair’s life with autism when he realized that his own parental expectations and goals had changed.  He relaxed his grip and focused his attention on stewarding Blair’s happiness and health.  My own yielding has something to do with stewardship, with recognizing old scripts about life for what they are, while also recognizing in deep appreciation where I have actually ended up.  These are the people – the family – I’ve been given so much later than I thought they would arrive and almost past the point when I thought it still possible.  This is the familiar terrain I’ve been given, the gift of right here.

Right here in our life together how do we practice stewardship?  What is the best and most faithful way we can steward – put to use for God – our life, time, love, and money?  Here is the child given into our care and he’s enough.  Being faithful stewards of Blair’s well-being is enough – a hard, joyful calling we are blessed to inhabit.

Six months to the day after our wedding, I led a trip to Israel-Palestine with my congregation.  My still-new husband stayed home and I felt the absence of my family.  Perusing a gift shop in Nazareth I found an icon of the holy family, three other unlikely people who were formed into family.  Earlier in my ministry I had anticipated the joy of being pregnant, preaching, and presiding at Table during Advent, my story comingling with Mary’s.  In Nazareth just after Christmas Joseph became my new companion.  Joseph, the one not related by blood but the final link that forms the family.

I was caught off guard just last week:  “Did you ever have a baby?” and “Do you and your husband want to have children?”  Sometimes, at times like that, I feel more unsettled than accepting.  I know people are curious and unaware of how deep the answers go to those questions.  And, depending on whether it’s one of my 18-year-old parishioners or someone with a few more years on her, I can struggle with how much and which parts to give in answer.  More painful are statements like “She put off a family for her career,” in their obstinate or ignorant insistence on only one set of choices about the path through life.  A or B.  But, as it turns out, there are more paths than can be conceived.  Some you choose, others choose you.

I would have chosen to be Mary but Joseph’s role chose me instead.  I became a mother by marriage and by the grace of God.