16 April 2012

It’s April Vacation – let’s have a fight about The Mom Thing.

Thanks again cable news for the sideshow.  Let’s pit Ann Romney against Hilary Rosen and watch the sparks fly.  What a fabulous use of everyone’s time.  And yet, I jump in. Frank Bruni pretty much got it right when he said that inclusion does not quite reach the stay-at-home Mom.  Who came up with the idea that being a Mom isn’t work if you have money?  Nobody ever said that about Jackie Kennedy. Who thought it was a good idea to denigrate the experience of one woman to validate the choices of other women?  Just because you have a Mom or are a Mom does not give you the right to pass judgment on other Moms.  Everybody knows that’s what playgrounds and playgroups are for, not mass media.

We can’t seem to embrace the individuality of motherhood because it is such a universal and formative experience; we all develop ideas about what it is supposed to be, and women in particular see the quandaries coming far in advance.  But there is only so much we can plan for.

I read a Facebook status the other day that tugged at my heart. A working Mom spoke eloquently about the career that was waylaid by the appearance of autism in her life. Sometimes it sneaks up on her, she says, and she allows herself to daydream about what might have been. Sometimes I think my own motherhood was high jacked by autism – that I never got to be the kind of mom I truly wanted to be. More of a free spirit – a gallivanting museum hopping different activity every day type.

I recall the day I realized I would have to rethink everything. We were with our playgroup at a new indoor playplace that was all the rage in the 90s – a converted house with rooms for dress up, crafts, and tons of opportunities for free play. And while my girl danced about in a tutu and feather boa, my boy fell apart – unable to share or cope at all among the noisy activity. I took him out to the car and there we sat, each of us stunned and bewildered in completely different ways. Both of us felt like our fun was taken away. I knew at that moment that we would need to plan better where we went and what we did, and I felt all sorts of fun things drop off the to do list.

After that there were long periods where I could not take joy in parenting the same way I had before. I wanted more than anything to be a relaxed mom. I know autism moms who are at peace, but that’s not the same as relaxed. I am much better at exhausted than I am at relaxed. And it was so ironic because I was fully prepared to mourn the suspension of my career to full time motherhood but I am still coming to grips with the lost opportunities of parenting – I was thrust into a kind of motherhood for which I seemed ill prepared. Or I thought I was. I was – and remain – frustrated about the things I cannot do, and the lack of spontaneity that comes from wanting to avoid meltdowns. Through the anxiety and exhaustion I had to improvise and become the mom I needed to be as opposed to the one I wanted to be. Sometimes I think that if I was a better mom maybe I could have found a way to build in the freedoms I lost.  I’m still working on this.

All of this is tempered by the reality that, by and large, autism has made me a better mother, and a much better person that I ever could have been without it. I am more empathetic and accepting of the different ways people perceive and function in the world, I understand my husband and typical kids better. I am more attuned to people’s need for sameness balanced against their capacity for change. I still need to be right but am much more willing to change my mind – I always did work mostly on instinct; I now understand the value of being data driven because the regular kind of parent intuition often doesn’t work with autism.

Most of all, I saw that I needed help if I was going to manage this family properly and be a good parent to all of my kids. The product of parochial schools, I didn’t understand that I could get extra help from my school district, that there were therapists and teachers and doctors who could give me advice (in the early days, unfortunately, a lot of that advice was lousy).  When my husband travels it was – and sometimes still is – difficult for me to rely on friends and neighbors to help us keep everyone on track and happy. It is work – physical, emotional, administrative, mind-bending, and incredibly rewarding work.

So if Ann Romney has money to spend on raising her kids, I don’t see where that means she doesn’t work and I don’t think she should have to outline her challenges the way I have outlined mine to justify the life she has chosen.  Money can’t buy happiness but I don’t see that it trumps credibility in parenting.  I hope that she is the kind of mom who values her children and spends time with them, knowing them, teaching them.  There are plenty of well-to-do working moms who choose to raise their kids differently, using their salaries to provide their children with other loving presences in their lives.  It is disheartening to think that, with all of the talk of women and choice, women can’t even respect each other’s choices.  In life, mutual respect is one of the very few choices we are always free to make.

15 April 2012

Before the Moment Passes

As the Easter Season winds down and we put the harbingers of Resurrection away, I must recognize the egg tradition as it plays out here.  This year, our boy chose to dedicate his annual painting of the wooden eggs to his trains and tugs.  Borne of my desire to avoid the smell and potential disaster of eggs and vinegar dyes, the wooden eggs painted by all of us over the past dozen years are scattered throughout the house.  Each year, it brings the renewal of the spirit home for us.

2 March 2012

The Pledge

Earlier this week our boy was asked to help lead the Pledge of Allegiance at the opening of a School Committee meeting.  He’s done this once before; this time the was filling for another boy, who could not make it at the last minute.  I asked what happened to his friend, and to my surprise my son answered, “I think he is too shy.”  Here he was, someone who struggles with his own anxiety every day, recognizing it in someone else and willingly stepping in to help.  Add to this his cheerful acquiescence to the immediate nature of the request – we had to just hop in the car and go – and the evening was already extraordinary in that it was so very ordinary.  He sat quietly in the back of the school library as people filed in and I chatted with the Superintendent.  He greeted former teachers and administrators who made their way over to see him.  He was a little distracted, and little awkward, but composed and charming in his way.  He was prepared.  He and his classmate beamed as the Superintendent introduced them; his hand fluttered ever so slightly as it made its way up to his heart and they led the Pledge.  School Committee meetings are televised; he looked straight into the camera, fully cognizant of the moment.  Everything went perfectly.

And then a member of the Committee rose from his seat and strode over to shake each boy’s hand, warmly and sincerely.  I was struck by the authenticity of this gesture and how it underscores my hope for us as a community.  Recently I have been agonizing about how inclusion for behaviorally challenged kids can really work in a high school setting.  At this age it is much harder to accommodate the differences in learning and socialization; there is so much to prepare for in life that successful behavior in the classroom setting just doesn’t seem like an important goal anymore.  Having spent all of these years trying to make kids successful in the school setting, now our attention necessarily turns to life outside of the school building and in the larger community.  So many people are worried about how their college graduates will get jobs; in this economy the odds are doubly stacked against those for whom an advanced degree is not in the offing.  But these small moments – a public appearance, greeting teachers and friends, a handshake from a leader – they change everyone’s lives.  I’m glad that, against the odds, we have stayed in public schools and that we have taken on what is sure to be a battle for the resources that will allow our boy the training and education he needs to be successful outside of the classroom.  I have always believed that everyone can benefit from what we teach our children with disabilities because it gives them a chance to teach us in return.  Inclusion comes in many forms, not just in the school but in the community, and it means we not only have them in attendance but we recognize that they are there and that what they have to teach is worth knowing.  I was starting to think that it was just talk, that our efforts will result in little more than the minimum required.  And then someone got up and shook his hand and I realized how much more is within our reach.

24 February 2012

The Blood Knows Where to Go

Last November, I read an article in the New York Times about the alarming number of people with developmental disabilities who die unexplained deaths while in state custody.  I couldn’t finish it through my tears.  The previous weeks had been largely devoted to transition planning and cognitive testing for our teenaged son, so my worries about his future were already close to the surface.  I usually am better at keeping a lid on my anxiety on the long term issues; I don’t think it’s fair to my other children to let autism dominate the family dialogue any more than it already does.  So after my decidedly lid-off response to the article, I went up to take a shower, which always helps me regain my equilibrium.

In my extremely nearsighted state I fumbled with the new razor I took with me into the shower, and nicked a bit of skin off of one of the knuckles on my left hand.  It bled a little bit but for what seemed like a long time, and I stood there in the steaming water, watching it channel through grooves in my skin, run off the side of my hand and disappear in the cascading water.  Maybe this is why people cut themselves, I thought, understanding for the first time why anyone would do such a thing.  The bracing clarity of pain and the fascination with flowing blood make other troubles fade, if only for a moment.  Having drawn blood, your instincts take over and stopping the flow becomes your only goal.   There’s a strange kind of release (adrenaline, I guess) in that kind of single-mindedness, especially when the pursuit of multiple goals is what is making you crazy.  I thought of my worries running down the drain with the hot water, and how what is terrifying in one moment can seem perfectly manageable in the next.

I haven’t been tempted to capture that feeling again in that way, but I understand better now the value of tackling challenges one at a time and setting short term goals rather than taking on the entire future at once.  And perhaps I should be a little more selective about what I read in the paper, and when.

14 February 2012

True Colors

The other day I was trying to explain some of the more practical points about autistic behavior to people who work in schools but do not have a lot of interaction with autistic kids during their day (the event leading up to that particular conversation is the topic of a post to be named later). These folks should know more, they should interact with the kids more, but they don’t.  On some level, there is only so much you can expect from the uninitiated – there are lots of disabilities and syndromes that I don’t understand because I don’t live with or near them. Most of the time, you learn because you have to; you learn because someone shows you.

During our first years of marriage we lived in a town near Boston in a little house on a quiet street.  Across the street live Sergei and his wife and their two or three children; I can’t recall how many of them there were, but each morning he would stand outside and wait for a school van to come and pick up his daughter, who must have been 12 or 13.  Sergei was big and square with a bushy mustache and large rectangle glasses.  His daughter – her name was Leah (Lia?) – was tall and thin with long black hair, a distant smile and wandering eyes.  It was always the two of them, sometimes holding hands, always smiling and waiting for the van.

My husband would talk to Sergei when he was out in the yard or talking a walk.  He was quiet and friendly, and he would bring Leah by on Halloween to trick or treat.  She wasn’t dressed up with more than kitty ears or a bright scarf.  She would just whisper the words; behind the smile she seemed to be somewhere else.  I wanted to say more to her but the words would catch in my throat; I didn’t know how to engage her and was afraid of making mistake and thus offending sweet Sergei.  I wanted to ask him about her but did not want to be rude.   So, to make up for being at such a loss, I waved and smiled whenever I saw them.

Watching the van one morning I remember thinking, “This is a kind of life I know nothing about.”  And later that morning on the train to Boston I recalled my Aunt Billie, who, in a previous generation’s vernacular, “was a little slow.”  The family talked about how Billie had gone to some of the same schools as Rosemary Kennedy, a remark whose significance was lost on me at the time.  Billie lived with our family for a brief time (a summer, maybe?) during which I worshiped her as she made fabulous art on our dining room table.  I was probably 8 or 9, and it never occurred to me to treat her any differently or feel that her faculties were diminished.  She made beautiful ink and paint designs on fabric interfacing – gorgeous flowers in vibrant colors that spread deliciously through the fibers.  Our mother had them framed and put them up all over the house.

When Aunt Billie died from kidney problems in her late 40s. I was 11 years old and the only one who got to attend the funeral in Philadelphia with my mother, and I was allowed to choose from among her things something to remember her by.  I don’t recall seeing any painting among her few things, so I chose a small needlepoint of a butterfly and her clock radio.  (In 1974, a clock radio was a big deal.)  I knew my connection to Billie was special, but I didn’t much think about how or why.  I loved the attention she gave me; she was an artist and I wanted to be one, that was all.

I still have the needlepoint tucked away somewhere, but better yet I now have several of her paintings.  A few years ago we were redecorating our upstairs and I decided to have some of them reframed – the faded dark mats and speckled antiqued wood frames were decades out of date and didn’t seem to match the art.  At the framers I chose thick white beveled mats and simple black frames, and I asked the framer to remove one painting from the old frame so we could see how it would look when it was finished.  It was then that I saw that the previous framers had backed the paintings with brown kraft paper, which, for all these years, had shone through the translucent interfacing and muddied the pigments.  When we backed the art with white paper the true colors burst forth.

All of those years, muted and misunderstood, Aunt Billie’s art was there for us to see but not in the colors she had intended.  Mom had done her best to give Billie all she needed, a place to live, the tools and a place for her artistic expression, but still the world couldn’t wholly appreciate her gift because she lived and worked on the periphery.  And as I grew up I didn’t notice the difference between the bright paintings on the table and the ones muted by the brown paper backing; I don’t think anyone did.  By then I knew what it meant to be in the same school as Rosemary Kennedy and had blindly accepted that the margins of society were okay for some kinds of people.

Now the school van comes to my house and the art is by my child, and we are doing everything we can to stay engaged in our community and steer clear of the margins.  We go to the public school and advocate for a program that is supportive and inclusive to the greatest and most practical extent.  Often it’s difficult – the margins are quiet and there are some people who need the space to be there.  But the decision has to be ours; we have the right to choose where we will be happy and how we want to belong.  And as we go, we will learn and we will show the people whose vision is obscured by the brown paper how they can remove those old dull perceptions so that they can appreciate what our true colors are.

30 January 2012

Free Us From All Anxiety

I went to Mass alone yesterday.  I usually have someone with me but I decided to go at the last minute; I needed to sort some things through.  It had been the kind of week that gave us a preview of things to come and some reminders of things we hoped were over.  At such times I like to go to Mass and check in with my parents in heaven.  I am grateful for the link they created in the common experience of going to Mass, back when the Church was a haven and when you felt guilty for not going.  Now I feel guilty when I go and when I don’t; betrayal weighs down both sides of the scales. The Golden Rule remains, though, and it is enough to bring me back.  I pray – head down eyes closed most of the time – through every Mass and wait for my favorite phrase:  “Free us from all anxiety as we wait in joyful hope…”  I hang on those words as I have ever since I can remember and they never fail to comfort.  I tell my children this; I do not know if they listen.

And so yesterday I prepared to lay my questions before God and family, knowing that the simple act of unburdening them in this way would bring some measure of peace.  Unlike many other Sundays, I was more confused than desperate. In fact, my issues were pretty typical: I wanted to come to terms with what it means for all of my children to grow up – dating, college, driving, cooking, cleaning, banking, living without me.  My job is to make them independent and if I succeed they leave me and if I fail they stay and drive me crazy.  Lonely versus crazy.  This was the problem du jour.  I needed a plan.

I listened to the priest make a reference to the movie The Exorcist, which I still have not seen because my mother – on the instructions of the Church – forbade it in 1973.  I imagined every kid in that church going home to stream it on Netflix.  I wonder if my own kids would be more terrorized by Linda Blair’s spinning head than they were the first time they saw the bleeding crucifix suspended over the altar.  It made me smile to think of that as we stood for the Profession of Faith.

I looked across the church and up at the balcony (the building is shaped like a cross with the altar in the middle) I saw a father with three boys and the one next to him was clearly autistic, fluttering his fingers and chattering away (but not audibly to me).

Several times after that I saw the Dad forcefully put this hand over the boys’ mouth and whisper in his ear, sometimes enveloping him in his arms as he spoke to him.  They boy did not seem upset or to resist his father’s embrace (the deep pressure probably felt good), but he didn’t appear to comply, either.  The other two children looked away.  The father was losing his cool, unaware that this was playing out in front of dozens of people, focused only on quieting a child who, compared to the toddlers and babies holding forth, was making very little sound.  Feeling both angry and empathetic I wanted to tell him that it isn’t worth it, that if being successful in church requires such physical restraint then maybe he needs to redefine success.  I recalled earlier times when my favorite thing about that cross-shaped church is that it has nine exits – nine ways to escape if (when) things go south.  Sometimes – rarely – we made it all the way through, but the plan of action was the same for Mass as everywhere else we went: don’t go anywhere that you can’t leave, and be prepared to leave at a moment’s notice.  Sit near the door.

The last time we went to church as a family was this past Christmas Eve, and for most of the Mass I stood behind my son – who is taller than me – trying to persuade him to keep the Kermit the Frog he had smuggled in his coat from making an appearance. The conversation went something like this:

“Why did you bring Kermit?”

“So he could hear the singing.”  He shows me that he is holding Kermit’s hands together as if he is praying.  He looks at me and then uses his other hand to clamp Kermit’s mouth closed.  With some effort, I give him a stern look.

“He needs to stay in your coat.” His eyes widened.

“Is it because he is naked?”

Tears of mirth and joy welled up in my eyes to know that he enjoyed the singing and that he was trying so earnestly to understand the impropriety of bringing a large stuffed frog to church.  I remembered how we tried to get him accustomed to the routine of the Mass, but it was never predictable enough – he was constantly startled by people suddenly bursting into song (and I noticed that not everything is sung at every Mass; it is pretty random as far as I can tell).   For him, if it wasn’t a wedding or a funeral, each of which clearly have a purpose, Mass was something to be survived.   With the help of many lovely people, we managed to get him through religious education and to make his First Communion but it was clear that the very stress of going was draining the spirituality out of the whole experience for everyone.  I prayed that the man in the balcony would learn the same lesson, and soon.

Mass with Kermit means progress, albeit the kind I never expected, and I guess that’s the point.  Drawing a map of other people’s lives as a way of defining my own will only take me so far.  Sometimes the most you can do is sit near the door.

16 January 2012

Tyranny of the Snowflake Plates

We have plastic plates with white dots on them that look very much like snowflakes, and this morning my boy came in and said, “Mom, you need to put these snowflake plates away.”  All of the holiday stuff was stowed last weekend, but I usually keep these plate out because, well, it’s still winter.  “They are TOO Christmassy.”  he says. “How about we just think of them as polka dot plates?” suggests my clever girl.  Nothing doing.  “Put them away,” he says, “they make me worried.”

Everything its place at its proper moment; this how he keeps from being overwhelmed and thus he structures our lives for us by compelling us to manage the details properly. Sometimes, just so he knows that change is doable, we will do something really crazy like have hamburgers for lunch at home (“It’s not dark!  They are only for dinner!”) or ask him to take a shower in the morning (“HMPH!”).

But this time, on this subzero no school Monday holiday (“No PJs all day, right, Mom?”), I will store the plates away until the day after Thanksgiving, when he will undoubtedly ask for them.

I should probably take the Christmas wreath off of the front porch, too.

***

PS  The cookies in the photo are salted shortbread cookies and the recipe can be found here.

10 January 2012

Friendship, Take Two

A lot of people talk about becoming alienated from friends – even family – when they have a child with autism.  Part of it is the total preoccupation that comes with addressing a newly diagnosed child’s needs – you don’t have the energy or the interest in keeping up your end of the conversation on things that used to matter. Many marriages do not survive this phase, let alone friendships.  Granted, for some people it isn’t a phase, because depending on the intensity of the child’s needs, that preoccupation doesn’t ever subside and there is a full-scale retreat into a necessarily specialized world.  But there is usually a point at which you look up from your computer or IEP or daily schedule or home log and think, “I miss my old friends and the way I used to be with them.”  Despite the fabulous relationships and real camaraderie I have with the friends I have made with kids on the spectrum, I get the feeling that I have somehow lost something so valuable to me in my younger years.  It’s real work to remember the person I was and to figure out whether any of the old me is left.  It helps to have a partner who shares the emotional care of our child, especially because my parents have already passed and taken with them the objective (kind of) view of my younger self.  I know we change as we get older and that midlife naturally brings on a certain kind of navel gazing and regret, but there’s nothing like parenting a person with an alternate reality to really turn your self-image on its head, so to speak.  But if you have typical children you are also raising you need to have one food planted firmly in their world, and that, too, can be alarming as you remember your clueless adolescent years and find yourself alternately missing those times and being embarrassed by them.  At this point I am haunted by my self-absorbed teenage self and the graying face in the mirror – all the versions of me in-between are currently out to lunch.

But now, suddenly, I am encountering friends who are coping with challenges that I grappled with earlier in my life.  Aging parents and chemically dependent relatives, like an autism diagnosis, are now sending others into crisis mode and now I am the one on the outside looking in, and I see that it is hard to know how to be a friend to someone immersed in crisis.   I have to remind myself to be a good listener, and to understand when to ask questions and when to change the subject.  The hardest thing, surprisingly, is to not get frustrated with them when I think they are focusing on the wrong thing.  When talking with parents of children with special needs you develop a brutal battlefield type of honesty that allows you to tell someone to find a new doctor, hire a lawyer, or call the Department of Education.  That kind of candor does not serve well in these situations, any more than it did for me in that first year after the autism diagnosis when I could not bear to take my son in for some kinds of testing because I knew it would be torture for him.  People who tried to push me into action only sent me deeper into the cocoon I created for my family as we plotted our next move, which I hoped would result in the emergence of a fully recovered child.  With the miraculous help of the internet, I plotted the steps that I could take – I think of that scene in Indiana Jones and the Last Crusade, in which Harrison Ford has to close his eyes and take the one big step to cross the chasm that stands between him and the Holy Grail.  It is a hold your breath moment, followed by many moments in which people trip lightly over the same threshold that took such courage for Indy to breach because he has led the way.  You can’t push anyone into acceptance or advocacy in a difficult situation; they have to take the first step themselves and in their own time.

As I think through this process of learning to properly reciprocate friendship again I recall a moment from last summer, when I visited a lifelong friend (some friendships did survive the crucible) in Iowa at her mother’s house, where I spent as much time as I did my own house.  I was so delighted to be back in Cedar Falls after so many years, showing my youngest son the old neighborhood.  I sat for a spell with my friend and her Mom, and we caught up on events old and new, and at the end of the conversation her mother observed, “You know, I thought that living on the east coast for all this time would have changed you, but you are just the same as you always were.”  Even though I have actively worked to preserve my inner Iowan, it wasn’t until that moment that I knew a kind of success at being myself.  All of the angst, all of the work, all of the proving myself in various venues, had not eroded who I was after all.  But there is still work to do getting back in touch and on track with friendships that have allowed autism to get in the way and to learn how to support people who are facing issues very different from ours.  That process remains work in progress.  I suppose that is what is known as life.

Washington Street, Cedar falls, Iowa, June 2011