Category Archives: parenting

Raising a Cup

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Eighteen years ago my mother was here with me, welcoming our first child, a girl.  Mom stood on our deck, smoking cigarettes and commenting on the spectacular display of autumn leaves.  “That,” she said, nodding toward a large, bright red sugar maple, “will be her tree, because it will always be beautiful on her birthday.”  And for 16 years, it was, casting lovely pink  light into her bedroom on sunny autumn mornings.  It is both satisfying and sad to know how much of the world we shared in those heady, confusing days of new parenthood is gone.  I look at it now as the cusp between being a child and becoming a mother, feeling only now, with my girl 18, that the transformation is nearly (though never, I guess) complete.

We are renovating our bathrooms, the last rooms untouched since those weeks she spent here, and it was recalling her blowing smoke out of the downstairs bath window (please don’t smoke in the house, Mom) that prompted me to think of all that has changed since then.  Little by little we have made the place our own, replacing the carpets, the floors, the kitchen, the boiler, the air conditioning, the roof, the deck and many of the trees (the sugar maple fell victim to a spring storm downdraft that sliced it clean in half).  Nursing a broken foot, I am forced to slow down and note the changes to life, inside and out, as I walk gingerly down the street and up the lawn after getting the newspaper, just as she did.

She used to tell a story from that visit, in which she and my husband stood at the kitchen window viewing some small pine trees scattered around the back yard.  They talked about how it would be so nice to have a little row of them lined up outside of that window.  A couple of hours later she came bustling upstairs to my room where I was nursing the baby, to report that my husband had gone out that very moment and moved all the trees to create the row of tiny pines outside the window, where they remain today, almost as tall as the house now.  She couldn’t get over it, “He just went out and DID it!!  Just like that!!”  It was a defining moment for her, and for us, as we have benefitted from – and been dumbstruck by – countless permutations of my husband’s thought-it-up-and-did-it moments.

She did that for me, and for many others, pointing out things in life that we weren’t really noticing but maybe should be.  She wasn’t always right but she made me think, made me BE in my life in a way that is still hard to do without her, eight years after she died.  But she has her ways of appearing, of reminding, of inhabiting the lives of her children and grandchildren.  A day does not go by that I don’t tell a story about her, say something just like her, or wear something that makes me think of her.  I wear her rings, I have her gray hair, I have glasses that are too big for my face,  and I’m pretty sure I am buying her sweaters. So, while the outside looks more and more like Mom, inside I am less lost in her shadow than I have ever been.  Life has thrown us different curves, and we have handled them differently, if with the same kind of determination. 

This week I pulled out a china cup and saucer  for my coffee like the ones she used to use to replace my usual white diner mug, partly to reduce the amount of coffee I drink (which is a Mom story for another time) but also because when I see it from across the kitchen, I can pretend for a second that she is just around the corner – or more likely, in the bathroom (I painted it her favorite color, periwinkle) having a smoke.

Dusting Off the Soapbox

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I have signed up for another tour of duty advocating for special education in our school district and so am subject to ruminating and ranting about how to do this kind of work without becoming jaded.  It’s probably already too late. 

The local organizations, committees, boards and councils charged with overseeing or advising school districts are made up of people who have consciously chosen to volunteer and advocate on behalf of students and communities.  These are roles people take on outside of their chosen profession; it’s not anyone’s day job (although we could certainly make a cases that it can be a full time job).  In larger towns and cities the lines between volunteer organizations and professional and political organizations are distinct, but when it comes to schools (and churches, for that matter) in smaller communities, those lines become blurred.

My point:  while the volunteer groups are in it (mostly) for the community and the kids, the same cannot be assumed to be true of educators and staff.  Hear me out.  At the outset it seems cynical, but education is a business and the currencies are power and turf – for every fabulous, gifted educator there are a dozen for whom it is a job where they do what they need to do, benefits are good, job security is great and the summers are open.  Being a teacher or a special education provider doesn’t automatically make someone a better person or make them insightful enough to see what is best for each child; not everyone is equally good at their job.  I hasten to add that people who volunteer don’t win the altruism prize automatically, either – they are just as vulnerable to power grabs and turf wars as anyone; for years we had PTA groups who refused to sit in the same room with each other to share fundraising and or even calendar event information.

Parents should recognize that administrators and teachers are under tremendous pressure to perform in a variety of ways, and for some teachers and schools the best way to get your students’  statewide test scores up is to get the children with difficulties assigned to another class or school.  Inclusion is a wonderful idea that takes tremendous work to implement successfully; not everyone is up to the task.

I didn’t come to this view quickly or easily myself – someone in my family, a high school teacher and track coach for over 30 years – clued me in ages ago when my kids started school but it took some time for me to grasp his fuller meaning.  He advised me that, just as in the business world, educators  are (understandably) interested in establishing their place within the educational community and that parents and kids are transients in that world – parents come and go but, especially with unions, colleagues are forever.  Sticking together and resisting certain kinds of change among staff peers is key to survival.  I remembered this when I learned over the summer that teachers in our district were asking that their non-certified colleagues get the ax, regardless of how successful they were with the kids.  I also thought of it during the various search processes where people lobbied to get friends hired or took our staff with them with them to new assignments.  People have a right to pursue their professional goals, but sometimes those goals do not match up to those of the students they serve.

Thus, I think parents who advocate for their children with special needs hobble themselves when we assume that everyone at the table is in it only for the kids – we are constantly having to push people to make child-centered decisions because in many cases they really don’t know what that means and making a child-centered decision often means change – and we know that people are naturally resistant to change even when their intentions are good.  We have seen again and again that some of the people working with our children do not learn quickly or adapt well to new methodologies.  I’m not saying that such educators are not doing their best (though some aren’t); I am just pointing out that they are people who are not inherently more virtuous or altruistic than anyone else, that education is their job, and that parents and volunteer organizations would do well to remember that when they interact with district staff.

 When advocating for children who are having difficulties, parents often feel so vulnerable and exposed by the process of asking for help they fail to see clearly what other people bring to bear on the situation.  Parents are seldom at their best when their children are the topic of a meeting (duh) and this adds to the power imbalance and increases exponentially the possibility of misunderstanding.  Most of the families that come to me at the outset of their interaction with the district tend to exhibit one of two postures:  fierce and demanding, or needy and apologetic.  The demeanor I strive for – and don’t always achieve – is unrelentingly realistic and collaborative.  It requires listening when I don’t feel like it to people I don’t respect, overlooking small slights that are painful for me but that don’t affect my child, arriving with an agenda that has as many bullets praising things that do happen as things that require attention, and advocating for teachers getting what they need so that children get what they need.

 Naturally, it is not fair or realistic to assume that everyone is as invested in a child’s success as the parent, or that they are invested in the same way; indeed I have seen several cases where schools offer help and parents decline services.  In both schools and families there are so many things competing for attention and resources it’s impossible to give every issue, every child the attention they deserve.  The key is to try, and to create and maintain a climate in which that effort is rewarded.

The Autism Beat: Reflections of a Furious Cow

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I asked my son to turn off the basement light and as he strode across the room to comply he retorted, “Oh all right, you furious cow!”

“Thank you!” I said, not very politely.  At which point another of my children said, “If I had called you a furious cow, you would have gotten really mad at me.”  I agreed, adding, “But he got that from somewhere else, and on top of that he loves cows – the furious part is the insult, not the cow part.”  Point taken.

Even though I shouldn’t be pleased that the autistic trait of drawing speech from movies and TV is so prevalent in our boy, I have to admit I get a kick out of it.  When he was small, people at the local pool thought he was British because he drew so many of his phrases from the exceedingly polite Kipper cartoons: he would stand next to the diving board and pipe up, “You have a go!”   Considering all the movie lines people throw around these days, it’s really not so undesirable – it’s a useful kind of shorthand.  As he has grown and developed more of his own, original speech, his reliance on scripts appears most often when he is upset and words come less easily. Knowing that the phrases come from somewhere else takes some sting out of the confrontation and allows us all to laugh (most of the time).  After the cow exchange we set about documenting the latest vocabulary of annoyance, and its sources:

  • “Exactly WHEN did you go insane?” – Ice Age
  • “I’m not interested in your excuses!”  – Sir Topham Hatt, Thomas the Tank Engine
  • “You’re a cowardly chicken, you really are.” – Porky Pig
  • “You are shrewd, rude, mean and dangerous.” – Chicken Little
  • “I hate you, rabbit.”  – Yosemite Sam
  • “Foom!!”  – This is the noise made when Sylvester the Cat’s head ignites in frustration.
  • “YOU get out!  This is MY swamp.” – Shrek
  • “Well?  Where’s the REST of me?” – Daffy Duck
  • “I’m going to go to the hospital for a NEW one.” – so old no one remembers, including him
  • “You’re just. . .different.”  Howard Bannister in What’s Up Doc?
  • “Murderer” – Scar in the Lion King (complete with Jeremy Irons accent)
  • “You’re a looney duck and a cowardly cat, you really are.” – Porky Pig.
  • “Madam, you WON’T” – Merlin in The Sword and the Stone

and, my all time favorite from What’s Up Doc:  “Who is that dangerously unbalanced woman?!” 

That would be me.

1919-1992

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Today is the 18th anniversary of my father’s death; my mourning has come of age.   The hot days of summer bring back all kinds of memories of him and playing them back and filling in details is a process that seems to dominate every July.  As much as I love him, most of the years we spent in the same house would never make a highlight film of his life.  And as much as he loved me, I am haunted by the bittersweet feeling and misplaced sense of responsibility that there are people and tasks that merited his attention and did not get it.

Depending on how you look at it I was in both the right place at the right time and the wrong place at the wrong time.  Appearing late enough in his life that I offered the joyous, no-strings-attached love of a little girl when such attention was in short supply, and in return I got the attention every small child craves from a parent.  My late arrival also afforded me a front row seat to a mid-life bout with alcoholism whose confusion scattered our family in untold directions.  I found myself adrift and distracted in the eye of the passive aggressive hurricane that characterized my parent’s marriage at that time, my allegiances shifting daily and instilling in me an unsettling certainty that there is no such thing as the whole truth.

His story ends well, with beloved grandchildren, an embrace of cooking, work and friends in the community, and a rekindled friendship with my mother.  She liked to say that the first 15 and the last 10 years of their marriage were worth all that happened between.  As it happens, what happened in between was my childhood. While I maintain that it was a happy one, I find myself sorting through it like a jigsaw puzzle, trying to make the brightly colored, oddly shaped pieces fit.

The inequalities of parental love – or any love at all – are tough to reconcile, and because I have witnessed in other families the carnage that can result when people attempt to settle old scores, I find myself overly focused on fairness and communication with my own children, knowing full well I have no control over how they might view their lives, and my role in them, fifty years on.  But what I carry with me is the sense that my parents, my family, have loved me the best they can, and that I should lift my head from the puzzle and work each day to return the favor.

Cracked Windshields (2007)

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Both of our windshields are cracked.  Each car dinged on separate journeys, the line making its way across in the cold and dark, a silver thread delineating a muted mountain scape, meandering across just below the line of sight we use when we drive.

My ding happened the night before I visited Melmark that November, and my companion looked at it and said you’d better get that fixed, it will spider and spread.  Noting the other ding on my side of the glass, I said, I am not in a big hurry – that one has been there since June 2005.  But exposure to the cold and snow of a night outside the garage in the snows of Vermont took the November crack and stretched it across the glass, to the point that I spent the hours travelling south to Rutland waiting for it to split wide open.  I trained my eye on the spot where it stopped, waiting for it to continue to the edge where I imagined a snap and a rupture on Route 107.  My eyes darted back and forth, eye in the crack on the left and following the churning white river on the right.  It is an interesting river, rocky and changeable, winding its way through the muted colors of the sloping green mountains, now more gray and black than green.  Aside from the occasional red barn, the whole world seems is in shades of gray, the mountaintops getting a sprinkling of sugar snow that we see as rain.  With each swipe of the wipers I wince, waiting for the silver line to extend and breach.

I annoyed myself by giving into the metaphor created by the fissure.  They tension, the duality, the precarious holding together of everything and still all of it as invisible, as transparent as glass.  Do I only imagine that a break is imminent or is it simply a part of life occasionally in need of attention and repair.  The tiny leak in the front living room window, the dead car battery, the dual cracked glass, do they are they cries for help or simply a life in need of routine maintenance.

He is treating me delicately; careful not to snap or blame, qualifying each observed problem with a judicious remark that it is no one’s fault, and I wonder if he observes the fault lines in me and knows that my internal plates shift easily now.  I am as tentative with myself as he is; confidence is fleeting, patience is hard won, joy almost non-existent, tears the most accessible.  All of the ingredients of happiness are there but they are frozen and refuse to mix and become the whole person for more than a moment or two.

I see the same suspended animation in him, too, (his glass cracked last week and he has driven to work today with his own silver fissure just below his eyes on the glass).  We do not discuss it but only hint at the cautious relief that the boy appears moderately stable on this Christmas vacation.  We watch him as a sailor watches a changeable sea, wondering how long the calm will last, knowing that the waters ahead are unlike any we have sailed before.  How to plan for the unplannable, how to respond to the lightning fissures of the autistic mind, how to stay poised for those and still respond to the vagaries of adolescence and anxiety that still form the other two. Sometimes it feels like we are fighting a war on three fronts and can barely resist the urge to run up the white flag – but then what?  There is no surrender beyond sleep and so we take that and hope that when we wake there will be a smile to greet us.

Scaffolding

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I’m a little slow on the uptake.  Yesterday it occurred to me that we have spent the last sixteen years carefully constructing scaffolding around our children, trying to raise them smartly, lovingly, safely.  And now, now that we are enjoying those revelatory moments in which they think things through, do the right thing, ask good questions, and fall in love with the outside world, we must watch them dismantle that structure that we built so carefully, and sometimes have an active role in taking it down around them.  I held on to a conceit that I could supply guidance and instill confidence when they need it, but now I see so clearly that there are steps – lots of them - they have to take beyond my view and that those steps include tasks I looked forward to doing myself that I must now entrust to others.  I knew that the process of building independence would be easier in different ways for each of my children, but I’m starting to realize that the person I need to build independence for is me.

The Autism Beat – The Flip Side

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Well, after making it sound like I live in a war zone I really should say why I love what autism has brought to my life.  Years ago, when I had an inkling that my life as a parent would be somewhat different than I expected, I plopped myself down at a friend’s kitchen table, and said “I don’t want this to change me; I don’t want to become angry; I don’t want to become the kind of parent that other parents avoid.”  Well of course it did change me and there are moments when I am angry and there are parents who avoid me, but I know all of that would have  happened anyway, regardless of whether I had a special child or not.

But what I didn’t know was that my life would have more texture and incidental joy than I could ever imagine.  That my child brings as much joy to others as we give love to him, that for every unexpected thing he does we learn something unexpected about ourselves.  We learned that it is impossible to parent any two children in the same way, that consistency is not about rules but about stability.  That believing what you say is just an important as the words you are saying.  That children often teach each other better than adults teach children, and that there are some children you can parent instinctively and other children that you have to seek help to learn to parent them well.  I have been quicker to understand and slower to judge, but less tolerant of those who might be quick to presume they understand me.

I learned to think in pictures, that emotions are a language unto themselves, that I can listen and speak with my eyes, and the practical value of being able to memorize dialogue from movies and TV.  I’ve learned the hidden language of touch, and that each person speaks it differently.  I’ve had spoken conversations for hours and gotten nowhere; I’ve made months of progress in a few moments of holding hands.  The two most important things in life are sleep and a sense of humor, followed closely by coffee and the internet.  With these things, I have found ways to help my family, stay connected with people I love, and found my way back to being the person I always hoped I could be.

When I look out from my life at the lives of others, I don’t see people who have it better than me – I see some people who think they have it better than me.  Everywhere I turn, people are still having mid-life crises, still worrying about their kids, still dealing with their parents (living or dead), still searching for something.  Sometimes I think people manufacture problems out of sheer boredom.  So, even as I struggle to create balance in my life, I am acutely aware of what I have and the bounty of my blessings.  Autism has given me the freedom to do what I think it right because there is no map for this life – I looked everywhere and I asked everyone and nobody knows.  That’s the gift:  the challenge of unraveling the mystery, of being able to write about it, of finding those marvelous people who speak our languages and who are on a similar journey, and who are laughing all the way with us.

The Autism Beat – Living with Improvised Explosive Devices

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A while back, someone sent me a link to an article that said that mother’s of kids with autism have the same type of stress as combat veterans.  This is not news, but it’s nice to have this kind of twisted validation.  I showed it to my husband, and he laughed and said “No kidding, we live with an IED.”  Exactly.  It’s the perfect illustration of what living with autism is like – you live under the same roof as an Improvised Explosive Device.  Just walking past – even a conversation with another person - can cause a freakout.  It’s like those phantom light switches that don’t turn anything on – some unsuspecting soul in China flips a switch and your child ignites.

To be fair, there are also parallels with living with teenagers, but with teens you can bet that eventually they will just give up and go to their room, or – better yet – stop speaking to you.  With just about any typical child, you can win the occasional argument, but that is not true with autistic people – if you decide that you are going to win they raise the stakes so high you have to rewrite the concept of what winning means- for you.  In our family we have dubbed this the Pizza Kid rationale.  Several years ago an autistic teen left his grandparent’s house and hid in the woods for five days because they had refused to have pizza for dinner.  Five days. He was never lost – he watched people look for him while he hid, and finally, finally got hungry enough that he didn’t have the strength to elude them any more.  You have to admire him for refusing to lose, but when it’s your own family, and for their own safety, you still can’t let them gain control.  So you barter – it’s really the only thing that works with anyone, but you have to be much more transparent in your motives because to people with autism it’s not about winning – it’s about keeping their world the way they need it to be.  Perhaps what is most unnerving of all is the randomness of it - the improvised part – what is crucial to them one day might not matter in the least on the next.  They need to control everything if they are going to survive, and you are the one who can provide the order they crave, or disrupt it.  So it has to boil down to life via contract – I will trade you this for that.  And even then there are times when they are so freaked out by the vagaries of life – bickering siblings, changes in schedule, bad weather – that they can’t even cut a deal, and the house of cards collapses - BOOM!

But there is a silver lining to this thundercloud.  You learn a lot about yourself and a lot about what motivates people of all abilities.  You learn the power of your own fear and the power of someone else’s, and that managing fear – yours, their, everyone else’s - is what 99% of your struggles with autism amount to. If you can find ways to keep either one of you from being afraid, of the world, of uncertainty, of each other, eventually, hopefully, you can put the flack jackets away.

The day after I drafted this essay the New York Times ran a front page story about a boy with high functioning autism who rode the subway for eleven days because he didn’t want anyone to yell at him.  This is not a closed topic.

Revisionist Parenting

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When I was nineteen I had a major crush on a boy I met at a summer job in Michigan. He was smart, sweet, earnest, funny and boyishly hadsome. We were inseparable for much of the summer but did not exchange so much as a kiss – it was fun; I thought it had potential. At the end of the summer we cooked up a plan to visit my family in Missouri before returning to our respective colleges. I knew my mother would like him, and she did. The feeling was mutual, I guess, because on the first evening at our house he said to me, ” When I met you I thought you were such a unique person, but now I realize that you are really just like your mother.”  I should have known at that moment that the romance was doomed; he entered the seminary the following year.

Fast forward twenty-seven years. My husband sits down in front of the family computer situated at the desk that I use, and looks at me and says, “Look at the way you have all of your notes and photos up on this wall and all of your papers here – you are your Mom.”   He is smiling – he loved my Mom. “I think you do it on purpose.”

Well, I didn’t; I don’t. I make rolls like she did on purpose, I speak truth to power like she did on purpose, I try to make my home welcoming like she did on purpose. But as my hair goes grayer and the questions from my children get thornier I find it maddening for it to be so hard to lift myself out of her ruts in my road – she did not overtly impose her ways on me and there are so many ways in which our paths greatly diverge.  I know we have faced the challenges on our lives in fundamentally different ways.   And yet, her influence is an incredibly strong default mechanism. It can make me frustrated, because in the years since her death I have begun to understand how she crafted the myth of herself by selectively sharing information with her children. But I also can empathize with why people do that – there are so many conversations that people will do anything to avoid. Parenthood doesn’t have a full disclosure clause, and the line between honesty and too much information is constantly shifting. When you share you risk two responses:  ”Why did you tell me this?” and “Why didn’t you tell me this sooner?”  I have been through this with my own children over the most minor events already, and perhaps I do share too much.  One person’s enlightenment is another’s burden, one person’s honesty is another’s pain.  You never know.

I witnessed enough drama in my Mom’s life to know that, as her youngest, I missed plenty. I wasn’t very good at letting those moments I did know about fade; I have a penchant for rehashing events in hope of prying out more details, reasons, answers. I keep looking for a version of the truth that I can live with, knowing full well that my ability to live comfortably with any truth changes from day to day.  What is acceptable in one moment is decidedly lacking in the next.  Sixteen years ago, I spent weeks camped out in my living room with my Mom, quizzing her about her life while we waited for my overdue baby to arrive. We covered a lot of ground, but I noticed gaps in her memory that I attributed to advancing age. It doesn’t really matter what she kept to herself, it is that she made that choice – repeatedly – that caught me off guard as the details emerged in later years after her death. He legendary candor was not what I thought and some of the things and people she put faith in were, to my mind, not worthy of her devotion.  She didn’t owe me full disclosure, but some examples she tried to set have not entirely stood the test of time, either, because she obfuscated.

But these things are true of all parents, all families.  For when we tell a story we are telling our own version, and that, by design or not, means that anyone else who was there as there may or may not agree.  We have a large family – something as simple as a Thanksgiving Dinner in 1975 can come off as Rashomon on steroids.  And I know that, quite often, there are plenty of good reasons to let sleeping dogs lie.  And so I struggle to calibrate what memories are rightfully mine, what traits I truly own, how I can understand what it is to write honestly knowing that truth in memory is only our own version of the facts at a particular moment in time.

I will always love and admire my mother, and there are many ways that I am glad to be like her.  Still, even in the throes of middle age, it is difficult to know where she ends and I begin, and I am reminded of what she said in the weeks before her death.  ”You’re going to be forty,” she said as she spoke of her terminal illness, “this is a good time for me to go.  It will be a liberating experience.  When your parents are gone you are truly free to make your own choices.  I never really felt like a grownup until both of my parents were gone.  It’s a good thing.”  Now, I think I know what she meant.

When the cat’s away, something breaks

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I go out of my way to make it seem like my husband’s business trips are fun for the kids and me.  We miss him less if we can break with the weekday school-dinner-homework routine.  We get takeout, make blanket forts, build Playmobil and train setups in the living room, become worse slobs than usual, watch black and white movies and have sleepovers in our bed (I steal his jeans and his pillow and I don’t have to worry about my snoring). 

But the house takes liberties of its own, kind of like the script of an Albert Brooks movie where everything goes wrong in the most eye-rolling ways.  The house lets loose all of those pranks it has been saving just for me – it allows the field mice in and sends them dancing up to the wall behind our bed, pops the lightbulbs in the most unreachable sockets, lures the woodpeckers to all four outside corners of the house, swarms the carpenters ants and termites, crashes a computer or two, breaks one major appliance, and finds never-before-seen ways to rupture the plumbing.  We are now at the point that, when the neighbors learn he is away, they call to ask if anything has broken yet.

And even though part of me thinks my husband has the power to set me up by conspiring with beasts and infrastructure, there’s nothing like a little drama to make time fly.  As long as I can marshall the courage and resources to make it right – so far my record is pretty good – I think it’s key for both of us to remember why we work better together than apart.  I feel liberated for all of about 15 mintes when he leaves, and then I notice the scaffolding of our lives tremble ever so slightly and though I get to snore, I don’t sleep quite so well.  Even so, I know that the house could come down around us, but the structure that counts is in fine shape.