family

28 September 2015

Lessons from the Blood Moon

Photo credit: Russ Campbell

Photo credit: Russ Campbell

We had a crystal clear night in which to observe last night’s blood moon. Even better, the eclipse of the super moon coincided with the time the moon shines through the skylight onto our boy’s bed. So I laid down on the end of the bed, propped my feet up onto the bookshelf, binoculars in hand, and watched the show. It was late, he was tired, and so periodically I would nudge him and hand him the binoculars so he could sit up see the ever-reddening moon. At first viewing about halfway through he was nonplussed, but when the eclipse was total he looked at me and said, “That’s pretty cool.” Then he crashed back onto his pillow.

A few minutes later, he finger-walked his hand down the bed and parked it gently on my shoulder. I reached up and gave it a squeeze. And when I next looked at the moon I noticed something else. Besides giving the moon more dimensions and a better-defined spherical shape, the dim light also allowed me to see the stars nearby. When there is a new moon it is easy, in our neck of the woods, to see the depth and grandeur of the Milky Way across the sky. But during the eclipse we can see the Milky Way and the moon together and for me, suddenly, the universe was real in a way that hasn’t struck me in a long time.

Over 30 years ago, I sat alone on a Lake Michigan beach during a new moon. I felt the depth of the sea of stars above me, and it occurred to me that if the moon was on the other side of the Earth then I must be upside down, in danger of falling into outer space. The thought was startling enough to make me reach down to steady myself and of course all I came up with was two handfuls of sand. I had to depend on gravity to hold me in place; that thought has stayed with me. I recall that moment often because it was then that my 19-year-old self became aware of all of the possibilities and uncertainties that were ahead of me, and there was only so much I could do to control the future. There would be times when I would reach for something solid to steady me and come up with a handful of sand. Sometimes a person would be there. Other times, gravity would have to suffice.

Last night when I looked out, past the moon and into deep space, someone reached for me and I was there. I was the something steady, and with my eyes on the cosmos I felt somehow worthy of his grasp. The future is as full of possibilities and uncertainties as ever, and the idea of it all being tied to a blood moon is not lost on me. Going forward, sometimes the full moon will dominate the sky, illuminating some things and obscuring others. Sometimes the new moon will let us see the rest of heaven from our darkened earthly landscape. Many things will change, for him and for me, but these – along with blessed gravity – will be constants if we can just remember to look up, together, and try to see it all.

7 January 2014

Shelter in Place, Emerging in a Better One

Once you've seen fire on ice, anything seems possible.

Once you’ve seen fire on ice, anything seems possible.

So, I’ve been away from my own blogosphere a while. Sometimes it just doesn’t feel like the right thing to do. The concept of “shelter in place,” made real during the aftermath of the Boston Marathon bombing, really appealed to me over the past several months. The idea of staying in where it is safe so that the world can take time to set itself right before we venture out again. It doesn’t have to be about danger, but sometimes it is about preservation of self. This is what I have been doing – sheltering in place.

But today it seems right to venture back here. Today there is news that is worth sharing, because I can say that investing in hope pays dividends.

In a post last summer, I wondered when it was okay to give aways things that most children outgrow during high school. We all have remnants from our childhood stashed away somewhere (don’t we?), but in the case of our boy we have, well, a lot of things we know that he is not ready to part with. So I kept most of  it. In that process, I took a very long look at the book shelf. The ABC and farm books are long since packed away, but many of the most beautifully illustrated books, picture encyclopedias and easy readers remain. I know he appreciates the images and that they inform both his understanding of a story and his artistic sensibilities.  Still, I very deliberately left the collection of biographies on the shelf next to the head of the bed. I bought them during the middle school years, when they were age appropriate, because they were fact-based, had lot of photos but contained some narrative stretches on highly reinforcing figures in history: Teddy Roosevelt, Abraham Lincoln, Amelia Earhart. He always looks up facts on the internet about these people; I convinced myself the books were still useful, and they look nice (and not too incongruous) on the shelf, too.

IMG_7353I know he will never be in love with books the way I was. I know he will never delight in conjuring places, events and people from a page dense with type. I know that I am lucky that his visual learning style is tailor-made for 21st century digital information. I know all of that, but all of my knowingness didn’t prepare me for the moment when, upon peeking in to say good night, I saw him reach over and slip a book off the biography shelf, open it and begin reading. Reading for pleasure. Reading for information. Reading pages on which there were no pictures at all. Just type. I slipped away unnoticed, afraid that I would interrupt and ruin the moment by making too big a deal of it.

But it was a big deal. It reminded me (not for the first time) that I kid myself that I know more about him than I do, and that creating limited opportunities for him will yield limited results. I won’t be placing Ulysses on the shelf anytime soon, but I’ll be upping the ante on a lot of fronts based on this moment. It also reminded me that one of the reasons that I felt the need to shelter in place was that the conversations that swirl around the senior year of high school are all about competition and achievement. Conversations that lead to well-meaning questions that I don’t necessarily want to answer. That simple act of opening a book means more to me than an 800 SAT score, but there aren’t many who would understand that, and I am past the point of wanting to explain it (and yet here I am, explaining it).

I need to leave more books on the shelf, more doors ajar, more options on the table. We don’t have to have anyone’s life mapped out by May.

But I had to know something. The next morning at breakfast, I asked him what he read before bed last night.

“I was reading about Abraham Lincoln,” he said.

“Were you looking for something specific?”

“Yes, I wanted to know how he met his wife, Mary Todd.”

Relationships. He was reading to learn about relationships.

10 April 2013

Today is National Siblings Day. Isn’t Every Day? Okay, Maybe Not.

SONY DSCWho thought this day up? Hallmark? Well, it’s a good excuse to sift through the photos, and it’s amazing how hard it is to find a photo that includes everyone that captures the spirit of our brood and still preserves some privacy. I think I found it.

Siblings of autistic children don’t have it easy, and we do our best to recognize their challenges and build some rewards into the process of accommodating the necessary quirks of life with autism. Remember my movie post earlier this week? Access to movies, screens and electronic devices like iPods is exponentially greater in our house than it would have been without autism (I think). We’ve made more trips to the beach, given more nods to everyone’s food preference (a special diet for one person demands more flexibility for everyone, sometimes), and we’ve tried, not always successfully, to give everyone the spotlight at time when they wanted it (sometimes they don’t).

The hardest thing so far is giving each child space from the others when they need it to create their own identity. Sometimes it’s difficult for ASD people with a developmental delay or cognitive impairment to see a younger child grow past them, as it were. And siblings are not always diplomatic in creating the separation that’s necessary for them to grow up. It’s hard to do and hard to watch; everyone involved experiences frustration, anger and hurt. It’s typical for all families to go through this, but as parents it is much harder to keep ourselves from intervening than we expected – we are so invested in the idea of inclusion that we have to remind ourselves that our children need to prepare for a life apart from each other. If we give them the space they need now, we hope the bonds they forged when they were young will stay strong after the angst of adolescence has passed. That’s the idea, anyway.

4 April 2013

Putting Autism in its Place

Written by me on my non-autism blog. Clearly, I’m not that good at compartmentalization.

LettersHead

Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.

Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with…

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2 April 2013

Light it Up Blue: sometimes the reflection is brighter and more beautiful than the flame itself

Our blue light

Our blue light

As I angled the camera to get a good photo of the blue candle, I saw that the reflected flame is more beautiful than the original. With all the talk of Holland* and dashed hopes that some of us face with an autism diagnosis, with all the planning and worrying still to come, with all the explaining and misunderstanding and misinformation in the world out there, with all the emotional collateral damage yet to assess, there is still a light that shines in the darkness of what my life would have been without him (and his siblings, who show such tremendous grace and humor under pressure). As much as ever, I embrace what I wrote in 1998 when I tried to describe what turned out to be autism: this boy is closer to heaven and hell than I will ever be on this earth. His unfiltered (or sometimes, overfiltered…) take on the world reveals the sublime and the absurd and gives me the courage to keep fighting demons that, without my children, surely would have overtaken me long ago.

But I know the roles can reverse. There are many who justifiably curse the cloak of darkness that autism drapes over their child. It’s impossible to be grateful for every moment; there are millions of them that are best forgotten. But it’s in those dark moments that we are most grateful for the light when it does return (if we can just remember where we hid the matches).

***

*The Welcome to Holland essay inspires many people when they first face a disability diagnosis, but Susan Rzucidlo’s Welcome to Beirut has always been my personal favorite for families on the spectrum.

19 March 2013

Saturday Moment: “Is THAT the Holy Child?!” The Pieces Fall into Place at Mass.

The Scene

Our church as it looked in January 2013

For many reasons going to Mass is a production for us (I documented some of our more memorable visits), and so we do not attend as regularly as I would like. The politics of the Vatican in recent years did little to stoke my religious fervor but we do make frequent trips to the empty church to say prayers for those we love, and in particular to remember the young friend my son lost to leukemia last year. The choice of Pope Francis I last week led us to venture to Mass this past Saturday afternoon, in honor of the forgiveness, renewal, and the promise of a fresh start his papacy and this Easter season may hold for all of us. It didn’t hurt that our boy, after a sigh, seemed willing to brave the crowd if it meant a chance to recall his friend. So off we went, arriving early so we could get a seat with a good view of the altar and the Blessed Sacrament.

We usually sit in the front section a few rows back. Hanging from the vaulted ceiling high over and in front of the altar is a massive crucifix with a fairly graphic representation of Christ. It has always been there, in that spot. There we sat, with my boy and his iPod open to a picture of his friend. He had used the paint app to put a yellow halo on his head, and he held it up high so that it faced the Blessed Sacrament. As I reached up to lower his arm gently he looked at me in alarm, pointing to the crucifix as if seeing it for the first time.

“Is THAT Jesus?!” he said in a stage whisper. I nodded, two fingers presses to my lips to remind him to speak quietly and to keep myself from smiling.

“Is THAT the Holy Child?!” Suddenly, the connection between Christmas and Easter began to forge in his mind.

“What HAPPENED?!” I told him we would talk about it later but the questions kept coming.

“Is he dead? Who killed him? See the blood?” He turned the iPod so his angel friend could see, too. That almost did me in.

Finally, in the car I did my best to tell him the full narrative, Christmas to Easter, promising him that we will go back during Holy Week and see the stations of the Cross that tell the entire story of the Crucifixion. He was wary, and raised his hand, palm toward me.

“I’m good.” Then he thought for a minute, playing something in his head. I mentioned that we have a movie at home that tells the story of Jesus.

“Wait! I get it!” And then he did a perfect imitation of the announcer’s voice on the preview from one of his Christmas videos:

“JESUS of NAZARETH!! That’s him!” It only took, like, fifteen years.

When we returned home he bounded up the stairs to say hello to his sister. She came downstairs, laughing.

On this visit in January he didn't even notice the crucifix.

At that point he didn’t even notice the crucifix.

“What happened? He came up to my room, jumped on my bed and said church was AWESOME. He never does that when he comes home from anything, ever.” I told her everything, and she went up to his room and hugged him. A while later he emerged and called down to me, standing at the railing where I could see him.

“Mom, does Jesus make our hearts happy?”

His smile, his voice, and the way he had his hands clasped over his heart told me it wasn’t really a question.

4 September 2012

So, How Was Camp?

I wish there was a simple answer to this question.  Was it the right thing to do? Yes. Are we glad we did it? Yes. Did it result in miraculous, instantly recognizable changes? In some of us, yes, but how if affected our boy and how it influences our next moves to plan for his transition to adulthood I am still not prepared to say. We still need to assess his physical health with regard to his diet and digestive system not to mention the dislocated knee (which appears to be fine). We also need to benchmark his academic skills and assess   his social development.  The latter shows greater depth and fluidity, but I can see the potential for him to fall into old patterns with old friends. He seems generally more communicative and more cooperative, though we are still in the glad-to-be-back-home honeymoon period.

Those miraculous, instantly recognizable changes allude to those of us left to fend for ourselves, boyless, at home. My own angst has been clearly documented here, but it must also be said that for all of our hand-wringing the most surprising change was that things here did not change nearly as much as we expected. Special diets, elaborate toy tableaus and the occasional Gerald Mc Boing Boing sounds are not as disruptive to our lives as we may have thought. In our case, the burdens of autism are not nearly as heavy as we were lead to expect – when he was gone we felt more far more emptiness than relief. In earlier years we may have felt it more than we did at this point but I feel the need to point out that the camp experience was more about him being away from us for his benefit, not our need to be without him. Some people really do not understand that. And we do recognize necessity that our other children need to know that his independence as an adult is just as important to us as theirs, which is a point that absolutely must be made with both actions and words. In reality, the hardest part of the camp experiment is that it is so lovely to have him home that we are loathe to think about ever letting him go away again (for the record, he is also perfectly fine with that).

And there’s the rub. The urge to become complacent is, at this early moment, almost irresistible. But we must keep our eye the prize of independence, or whatever measure of it we can hope to achieve. He is vulnerable – we know now that he can endure a lot but we also know that he may be just removed enough cognitively that he might be forced to endure things that he should not. He was in an environment that we knew would not exploit his good nature – where else can we possibly find that outside of home?

So camp, in the end, did not give us as many answers as we might have hoped, but it is making us rethink our questions.

10 August 2012

The Visit: Longest and Shortest Day of My Life.

We went. We visited. We came home.

We got the best hugs ever and spent much of the day just soaking up the feeling of being together again. It was hot and humid and so group activities where we could socialize and learn more about camp just seemed impossible – we strolled off in search of a breeze and found it on a hill overlooking the lake.

One look at his cabin made me feel so proud of our boy – living in close quarters in that heat (lots of fans) for so long would test the best of us. And of course this is no ordinary group of boys. They are quirky and sometimes challenging kids, and fortunately the counselors are young men with good hearts and lots of energy. It is clear that he copes by drawing  – the walls next to his bunk are plastered with art in which every part of the paper is colored. Our girl found a little note written on the wall next to his pillow: “6 weeks can take forever and all summer.” At that moment it was hard not to whisk him to the car and bring him home, until I asked him what he missed most. He looked wistfully away and sighed. “Wireless internet.” Okay, he can stay.

And the reality is that he showed us he has the tools to stick it out for another couple weeks, and do so happily. His knee is great, he is taller (I think), more muscular (for sure), and much more self sufficient. He swims twice a day and has learned to water ski. He got and wrote some terrific letters; there’s an impressive pile of them next to his bunk. I am overwhelmed at the generosity of all of the friends and family who make the effort to write to him and send him care packages. It is an unexpected blessing of this whole enterprise that so many people would take the time from summer work and travel to think of him – he got packages and postcards from Europe, Ohio and California representing family, friends and teachers he has known at every age all the way back to preschool.

Our world – his world – is bigger than we thought. That alone is worth the price of separation.

2 August 2012

Letters? Oh…you mean theeeese letters…

Naturally just before Parent’s Day they get the kids to get caught up on their correspondence – just in time to ask you to bring them stuff. You know they’ve been sitting around his bunk for a while because there’s no mention of the knee injury. Doesn’t matter – I live to see his distinctive handwriting (best in family), which I keep trying to make into a font.

You can tell that the bulk of his letter-writing experience has been to Santa Claus and the Easter Bunny because he’s got the gift requests down pat – very specific, down to the materials and manufacturers. The boy understands how to communicate when he wants something – he includes visual prompts. He drew the cookies he wants me to send.

Awesome.

23 July 2012

Take Me to the River

It is easier to leave than be left. When you are the one leaving there are no empty spaces to fill – you can become immersed in the going, in new environments and sights and experiences. And so I took the opportunity and, for a few days, we left our partially empty nest and explored a brand new place. I chose a destination that I always wanted to visit but that held no particular sway for my boy and would at least not completely bore my remaining children: the Hudson River Valley. It had the added appeal of being a place I know my father would have loved, with the river, the railroad and the legacy of FDR. This post, 20 years to the day after he passed, is for him.

Let me say now that my kids were fabulous sports and that I told them this repeatedly as I stuffed them with food they loved.

Everyone deserves to get their way sometimes, and I made sure that we all had a say in what happened each step of the way. I fed my inner history geek with visits to Franklin and Eleanor Roosevelt’s sites, the Vanderbilt Mansion, historic Hyde Park and charming Rheinbeck, NY. The weather was sweltering but the views were fabulous, and I will never forget a golden hazy afternoon driving down the Taconic Parkway toward the river – we were the only car on that undulating road, and it was as though we were moving through time toward the bygone days of FDR, the Vanderbilts, and the railway chugging along the river, with each view painted to perfection by someone perched upon the hills. Oh, that I had been driving something other than a minivan, but no matter.

I was determined that this summer would mean something more to us than surviving camp and preparing for college. I wanted to give a little of what I got from my childhood, trailing my mother though cities and museums and restaurants, only half listening but loving being part of something that seemed bigger than me. I like being where things happened, I like knowing about those places, I like sharing what I see and marrying it with what I read. All of this generally requires a lot more talking than the autistic mind would prefer, and so my inner narrator has in many ways become the blogger (see also, Lettershead).

The complicated story of the Roosevelts was not lost on me as I toured the vastly different homes of Eleanor and Sara Delano Roosevelt. Each of them doggedly pursued the agenda life set before them, with many changes of course and myriad joys and disappointments along the way. Both raised in privileged surroundings, one used money to exert power, the other to buy whatever freedom she could get for herself and selected others. We looked at their things, looked at their spaces, and talked about their influences on the presidency and the nation, independently and through FDR. It reminded me that there is only so much you can plan, only so much you can expect to preserve, and that if anything is to prevail it is the spirit. All else is fleeting at best.

Photos: Overlook of the Hudson River from the Vanderbilt Mansion, Hyde Park; The Eveready Diner, Hyde Park; The stream at Val-Kill; Corner walkway of Springwood, the Roosevelt Home; View of the Stone Cottage from Val-Kill from Eleanor’s Val-Kill cottage, with ramp for FDR in the foreground.