autism

2 July 2012

Day 1: I Miss the Grocery Store Rules

Off to camp for just over 24 hours and everything was just fine until we went to the grocery store and realized I only have to make one kind of dinner tonight. No special burger, dog, or pizza, just the regular stuff. I was okay with all that – happy, even – then, stashed under the checkout on the way out, I saw the ice melt with the Road Runner on the package, and no one said “Beep! Beep!” in my ear. I realized that for the next several weeks I will not need to invoke the local grocery store rules:

  • No Road Runner sounds.
  • No Tigger bounces.
  • No yodeling.
  • No skipping.
  • No chasing.
  • No DVDs.
  • No Scooby Doo gummy snacks.
  • No buying every single container of lemon sorbet, box of Rice Chex, or package of gluten free chocolate chip muffins (one of each only).

There are dozens more and they will all come back to me every time I go to a different store. There will be days when the suspension of the rules will come as the relief it is supposed to be, but today there’s just an empty space where the “Beep Beep!” usually is.

30 June 2012

The Pre-Tromp Romp

Now is a good time to note that, however camp turns out, we have learned and grown enough in the last two weeks to make it worth it. From a delightful and heartwarming exchange with the creators of Hoops & Yoyo to the deepest conversations ever with our boy about growing up and what camp is for, we have already made great strides. We have packed a summer’s worth of activity into one week and watching our growing children do the same things they always have shows us how much they have grown physically and emotionally. So, for a moment, we smile and breathe easier, understanding that we were a little better equipped for change than we thought. Hearts full, fingers crossed – here we go.

Photo: a parade of sparklers.

13 May 2012

Mother’s Day: Instant Respect!

Any holiday that results in the world being filled with flowers and slightly burnt toast can’t be all that bad. Our mother told me that some of the best days of her life as a mother were when her own children had kids of their own and felt the weight of responsibility that comes with holding a newborn.  She paused for emphasis and raised her hand with a flourish and proclaimed: “Instant respect!!” And she treated all of us like people all the time – no talking down – never really couching her guilt trips (there were many; they can be useful) in a way that diminished motherhood itself.

A feminist who disdained the very word, she understood the power of matriarchy and wielded its grandly. And her belief that children are gifts from God, given to us to teach us about ourselves as part of a the pursuit of the divine was probably her greatest lesson to me. She believed in everyone having a divine purpose and often said that pride was her biggest obstacle to pursuing the path laid out for her. I get that.

Mom said she had to remind herself that she could neither control nor shape the fates of her children (though that really didn’t stop her from trying) but the more powerful thing she said was that her belief in divine providence reminded her that she could neither take credit for our successes nor blame for our mistakes. And while there were times I thought that statement was a cop out, I can see how she thought that when I look at my own children; I don’t know that much more about them today than I learned in the first 24 hours in the hospital after each of them was born. They have all been so much themselves from the very first moment we met, and yes, I factored in the autism. Certainly we must give them all the tools we can to release the full potential they have; to keep them healthy and safe but most of all to help them know and understand the power and meaning of love.  It sounds simple and it’s pretty straightforward until you have that moment as a mother where the greatest love means letting go.


6 May 2012

IEP Meeting Prep: Read Differently, Move Deliberately

When preparing for meetings I find myself glued to the computer, doing research, typing notes, reading and organizing old files – mission statements, health care plans, meeting agendas.  I am bushwhacking; managing the jungle of information in front of me in hopes of paving a road for us to walk on, hoping to keep us from falling off of some existential cliff that I imagine is there if we do the wrong thing or miss the wrong cue. My mind and my fingers move so furiously that the rest of me is paralyzed and exhausted.  I don’t want to cook or clean or be social; all I want to do is sleep and prepare, sleep and prepare.  I am a tenacious, insufferable, boring, anxious, obsessed stick in the mud.  On-screen diversions – Facebook, The Times – don’t count because they are filled with reminders of the task at hand and then tend to divert in the wrong direction.

But I was prompted last week by a parent wiser and stronger than I, that motion – physical, heart-rate elevating motion – is necessary to calm the psychic storm that comes with these moments of transition.  She faces some of the same issues I do and she is making herself run; I will have to be content to walk, but I will do that and whatever else I can to get out into the daylight.  I will take a walk, get my hair cut, and go to the hardware store and get things that have been languishing on my list for weeks.

The last time we were retooling at home and school like this, the same novel sat on my nightstand for three years, unopened, collecting dust.  By the time I got around to picking it up I was so tired of looking at it I gave it away instead of reading it.  The moment had passed.  I don’t even recall what book it was; I only remember that moment of picking it up at all is that it happened when I was talking on the phone to my cousin who was dying of cancer at the time.  We were talking about things left undone and I mentioned the book that was sitting there, and she told me how she had managed to pare down her life to only the essentials and divested herself of the distractions of television, newspaper and computer.  At that moment I realized that there would always be something better to read than that book.

Now the books – good ones this time! – are piling up again (sorry, Walter Issacson, William Trevor, David McCullough) but at least I am learning to make it mostly non-fiction or short fiction.  I must finish it before bed or  know how it turns out.  I am interested in knowing about the journeys of all kinds of people in the 20th century, and so the book that rescues me today is Sidney Lumet’s Making Movies.  I’ve seen so many of the movies he made and he writes so easily and compellingly about the process of film making that it gives me something that is both easy jump into and easy to let go of when my attention is diverted, as it so often is at these times.  At this moment, it is the right mix of nostalgia, entertainment, and clarity of process that makes me happy and still keeps me learning.

29 April 2012

Hug Me Elmo.

This is from a couple of years ago and it is a sweet photo but at this moment it is an example of all I want to overcome.  Now, suddenly, as adulthood looms for real, the endearing photo of a birthday hug from Elmo only tells me that we need to do more to make the adult world accessible and palatable – no, joyful – to our boy.  Adulthood is daunting to all of us, so how do we differentiate childlike from childish, nurturing from insulation, love from coddling, wisdom from denial, bravery from cruelty?  The lines between all of these things shift on me, all day, every day.

18 April 2012

You’re a Pretty Cute Kid but Your Feet Don’t Match

That’s what my Dad used to say to me all the time.  The first time he said it I was very small and absolutely horrified, and I heatedly insisted that my feed DID match.  Then he took my tiny toes in his hands and pointed out that my big toes were on different sides and that if my feet truly matched they would look exactly the same.  Stubborn as I was, I did not like to be teased in this way and for a long time I scowled at him every time he said it.  The older I got it became progressively more annoying until – poof! – it it became endearing, one of many stock phrases he could be counted to toss out in the course of a day. And eventually I started saying it to my own kids, and they find me annoying.   Surprise.

Last Sunday morning it came to mind when my boy padded into my room and slipped into bed with me, taking up the spot usually occupied by his traveling Dad.  As I snoozed on my right side, he lay on his left side playing with his iPod, and he lined up his feet so that the soles of his matched up with the soles of mine.  An excellent case of respecting personal space with me, as I jealously guard the few weekend mornings when I can sleep in.

I used to think more than I should have about the matching feet thing – it took me longer than usual to grasp the concept of symmetry, I guess.  It bothered me when I was little, because I was the youngest and hardly ever in on the joke and thus took everything so literally (case in point: I thought the guerillas who terrorized the Olympic village in 1972 were men in gorilla suits). Sometimes I still miss the cues and can be gullible, which makes me love living with this boy even more because his syntax and receptive language are all over the place – it can be hard to know when he is being silly and when he is earnest.  He relies quite heavily on scripted speech and so some of the mashups that come out are priceless.  A few weeks ago after being rude and subsequently scolded he asked, “Did my popping off cook my goose?”  The latest favorite happened when he got into the car after a long bike ride with a friend:  “Man!  I have a splitting butt ache!!”

Our feet might not match, but I think we understand symmetry.  And, unlike his mother, he has very nice feet.

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.