Susan's Blog

Tuesday, August 31, 2010

The Pennsylvania Gazette, which is the University of Pennsylvania alumni magazine (Ned and I graduated in 1984), has just published a feature article on me, autism survival, and family love/life.  You can read it here.

In My Mind I’m Going to Carolina

Ain’t it just like a friend of mine,

To hit me from behind.


One of the best friends I’ve ever had is someone I met in childbirth class, while pregnant with Nat.  Merle was the second Southerner I’d met in my sheltered New England life, but I had never met anyone like her.  Merle had a lot of knowledge stored up, about babies, but also about family, health, people, religion, organizations; you name it, she had something to say that would make me think.  I didn’t always agree, but I did think.  It seemed as if an entire structure of World View — (sorry to geek out here, but I mean in the Schopenhauerian, Weltanshauung sense of world view, our inner, indestructible, and immutable perception and value system) —  had been built around her, like a library of good sense and information. Whether it was particular to her family culture or had to do more with growing up in a small town in South Carolina, or just how Merle is, she could always match what was happening to a reference in her mental stacks.

I was always surprised by her certainty.  I was never certain about anything.  And when our two babies came along (Quin and Nat), I was even less so.  I had read Leach and Brazelton, but still I knew nothing.  It was as if I were inventing motherhood.  Merle, on the other hand, had only read Spock, but she knew right away about things like allergies, thrush, possible ear infections, and subtle shifts in behavior.  Merle was the first one in my circle who mentioned a concern about Nat and how quiet and withdrawn he could be.  When we found Nat hiding in the bathroom from Quin one day when they were around two, Merle told me she was worried.  When I protested that Quin was just too noisy for him, and that our pediatrician was not concerned about all the other things about Nat, Merle’s response was, “Well, you are.”

She knew that I was worried, and didn’t make a big deal out of it, even though it was a very big deal.  Nat’s behavior, to her, fit right into an area of her wisdom, called, “The Doctor Needs to Do Something About This.”  No value judgment, just certainty.

I got angry at her.  She backed off, but she was unfazed.  All the while that I churned the idea in my head that we would no longer be friends because she just could not deal with her out-of-control kid who terrorized tiny Nat, and because of her cornball Southern Common Sense, Merle just eased off and continued to be my friend, just a little more quietly.

I don’t actually remember how she responded to the news of our diagnosis.  We just kept being friends.  I do remember telling her a lot about my own relationship with my parents, which was very strained, on and off, at the time, and that Merle would listen with furrowed brow, and always say, at the end, “Yes but they’re your family, and they love you, so…”  Another bottom line.  Infuriating, and yet, when you found yourself in Merle’s orbit, it was very easy to find a place and go with the flow.

I gave a talk the other day in North Carolina, for Autism Services of Mecklenberg County, and there I met another Southerner, Ann,  the organizer of my talk, who possessed a similar solid scaffold of wisdom.  Just having lunch with her, I was blown away by the way she could dip into her stores of experience/philosophy/knowledge. She told me about how her son, who has Asperger’s, was once asked by fellow students, “Are you a snob, or just a retard?”  because he did not talk to any of them.  His response was “neither.”  Ann told me that when she heard this, she told him how he had missed a teaching opportunity.  He could have explained Asperger’s to them, enlightened them about how it is difficult for him to converse the way they did.  She said (and I’m paraphrasing awkwardly here) “everyone gets one more chance, to be good.  You explain, inform, enlighten, and maybe they’ll be sorry, or next time they’ll think.  After that, if they do it again, they’re bad.”

No dithering around with bullying and teasing theories, no wailing about the lack of adults present, no throwing up of hands.  Ann could really think on her feet, and grab onto the teachable moment, while at the same time, treating her son as the responsible individual.  And in doing so, this is what he has become.  He just got back from a year in Americorps.

Ann seemed familiar to me while we sat there and ate and exchanged stories of our adult sons, even though we’d never met before Friday.  I felt an odd ease and comfort with her, that feeling that I was being challenged and embraced at the same time.  I realized at some point later that she reminded me of Merle.

Quin and Nat are all grown up, and I talked to Merle the other day for the first time in a while.  I don’t know why we lost touch.  She told me how Quin was probably going to take a gap year from college, and how she thought that was a good idea, give him a little more time to grow up.  She told me what her worries were, and what she would do about them.  She listened to mine.  My problems were not bigger or worse or anything, even though we have autism going on.  When I brought that time up recently, when she’d told me what was what about Nat, she merely shrugged and said something like, “Well, I just knew he was too quiet.”  Just like always, Merle knew what was what, and went on from there.  I could feel my place in the universe, talking with her like we used to.  Things fit softly together, and made inexplicable sense.  Surrounded by her solid walls, I found I could really enjoy the view.

Tuesday, August 24, 2010

Love the one you’re with

This is the second day of battering winds and cold rain on my Cape Cod vacation.  You might find yourself saying, “Oh, that is really too bad!  Ugly rain on your vacation!  You have to be indoors and bored and trying not to eat to console yourself.”  Of course, you could also say, “Wow, you get to be on vacation in the most beautiful place on earth with your true love and ultra cute sons.”

Which is the truth?  It’s both.  How do I balance contentment with the human condition of dissatisfaction, and the drive to have the best/be the best?  Lately Ned and I have been really into Louis C.K. (the link I’ve given you is much more restrained than his usual stuff, but still funny).  The other day, Ned quoted from him, saying, “The key to being happy with your body is to want the body you have. In my case, you just have to want a shitty body.”  The thing is, unfortunately this is the truth.  Loving what you’re given is so much a part of happiness, yet it is one of the most challenging things to do.

It is also not what we are supposed to do — not entirely.  Because even as I try to curl up softly and contentedly with what I have, there is all that I still want, and that I am working toward.  My children are the best example of what is given, of what I have, but there is no way on earth that I’ll simply let them be exactly who/what they are.  They have to be pushed to try things and grow.   We say we love them for who they are, but we also love them for what they could become, if they push themselves.

I’ve always been trying to balance this dynamic, so that I am not pushing them to be something they’re not, thus giving them a bad message about themselves.  But — who they are is changeable, improvable!  So how do you do it right?   For example, over the years, I have learned that it is important not to view Nat’s autism as a defect, but rather as a collection of characteristics that are both him and not him.  This makes it all the more complicated, trying to get him to grow.  He’s like a big beautiful sunny meadow of flowers:  but which are the “real” flowers and which are the weeds? If you pull out too much, what will you have left?  If you completely replant, haven’t you changed the original essence?

I have heard virulent ABA-ists talk about stomping out all of the autistic behavior, in order to make the child fit in better.  Of course we want him to fit into the world, to find his place, and yet, at what cost?  Perhaps his self esteem will suffer, perhaps not.  The cost may be something more broad, like a vague pervasive unhappiness and feeling of discontent permeating the family atmosphere.

Sometimes I envy those autism parents who are just so sure of what is bad about their child, or fixable.  They have it all stacked up, solid and immutable.  They have a list in their heads of what is what.  I have never had that kind of certainty.  I have always seen the dreamy spacey qualities in Nat as both things to work on and things to let be.  I have sometimes (often) simply been in love with his autistic traits, such as his ability to sing the erratic movement of his wagon, as a little boy.  Or his odd verbal formulations that truly express the sentiment, far more than the “correct” usage:  “It’s a different, that’s okay.”  Or his soft self-talk, wispy whispers of things he needs to say, but also needs you not to hear.  How can I explain this to you, you who might say, “I have no right to complain to you because you have it so much tougher with that” that you have every right? I don’t know the depths and darkness of your misery, and you don’t truly know mine.

There is no way to compare one child to the next, one family to the next.  It is all about what it feels like.  It feels good to me to have this particular messy garden, where stuff dies one year and inexplicably grows the next.  Louis C.K. probably has it right:  he just loves his “shitty” body, rather than feeling miserable about the body he just can’t have.  The real truth, however, is that it is not a shitty body if it is alive and giving you joy.

Wednesday, August 11, 2010


This is what happens when a teacher is great.  A whole world opens up.  This is what Therese, Nat’s teacher and camp-aide-to-be, sent me:

Today I went to Nat’s House in the morning and I had one of the best conversations with Nat. It started with the probing questions from me about what we will be doing this weekend and next week and the quick affirmative responses from him; but after two or three turns he started giving me more details. He started giving me the details of what he would be doing or going during the day. Like when I asked him about Sunday, he said “you go to airport, you go to Colorado, you go to camp.”  The school staff at the house started to engage in the conversation and he switched his eye contact back and forth between all of us. And when someone asked him what he will do during the day at camp and he said “you wake up” then paused then said “go tubing.” Not all of his responses were complete sentences but still he gave us DETAIL! The conversation between the four of us lasted close to a minute and Nat was completely engaged! That just made me that much more excited about this trip!

Me, too. Here is a Tabblo of pics from Nat’s very first time in Extreme Sports Camp, in 2007:

Tabblo: Leavin' On a Jet Plane

Day Eight:  Back to Boston.  We left Aspen and headed to Snowmass to pick up Nat from his camp.  Each of the campers swung into view via a ropes course!  When Nat finally disembarked, he got a lot of cheers and hugs.  Fifteen hours later, we were home!
See my Tabblo>

Let’s Start Packing

Rabbi, we’ve been waiting all our lives for the Messiah. Wouldn’t now be a good time for Him to come?

Rabbi: We’ll have to wait for him someplace else. Meanwhile, let’s start packing.

–from Fiddler on the Roof

I guess all families, all people really, must live with the unresolved.  I feel like sometimes I go around with the anxiety of the unresolved as if it were physical; I feel it right in my stomach.  It happens a lot when I think about Nat, and also Max and Ben, but maybe moreso with Nat.  Especially now that he’s not here for most of the week, and so a lot about Nat has to be taken on faith.  I’m not so good at having faith.

Sitting here on my living room couch, with creamy sunlight splashed across the frayed armchair nearby, I thought about the things that I had to get done in the rest of the week.  Any peace that the softness of the scene could have given just shattered as I realized that the number one thing going on is Nat going to camp on Sunday.

Why do we do this to ourselves every year?  This is the third time we are sending Nat away to this camp in Colorado, and it is always an anxiety-producing proposition for us, and by us I mean me, Ned, and Nat.  Even if all the details were squared away, such as the packing of sunblock and sturdy shoes for hiking, (and by the way, they’re not), this trip is one big nightmare of worry. Thankfully, we are going to get the gear honey website to ship last minute items directly to the camp and so, that’s a relief. We send him on a plane with a teacher who knows him well.  She has to get him through airport security, a plane ride, a plane change,  into a rental car from Paris and across a mountainous highway to the camp.  And then there’s camp itself.  Extreme sports camp!!!  She’s never been there and actually this is a new location for the camp, so neither has Nat.  Same set-up though, of one-to-one counselors during the day, and the teacher with Nat during the night.

I am not going to go into all the details here because that will only make my stomach feel worse.  The thing in my head right now, that forced me to open up and start writing is just that sinister undertow of Unresolved, pulling beneath the surface.  What do I mean by “unresolved?”  I mean all the stuff I have no answers to, never a definitive, tablets-from-God certainty.  Is he alright?  Is he going to be alright?  What does alright look like when you are fairly severely disabled?  From Day One, we all wish for a manual that will tell us these things.  We read book after book, and google autism until we’re googly-eyed.

We all want to know:  am I doing the right thing?  How about this?  How about now?  What if I stop, because I’m so tired?  Why did we commit to this path?

What have I forgotten?

Why do we have to be human and flawed, and so we just end up having to hope for the best?  What if we never get the best, but only the so-so?  Maybe it’s just that the thing about my life is that I’m doomed to uncertainty, and that happier days are ones where I’m more certain.  But I don’t think I’ll ever be Sure.  And so I’m sending him on this trip, feeling like it will probably be okay, probably great, but dammit, I just won’t know until he’s back.  Meanwhile, he has to keep leaping faith, because I fly by the seat of my pants.

Wednesday, August 4, 2010

A Fine Balance

The other day I had a pretty bad bike accident.  I was going really fast down a hill, on a street where I’ve ridden many times before.  There were no people around, no cars.  There was nothing to distract me, except my own thoughts.  I was thinking about colors.  I was feeling my power, and the glory of being alive.

I hit a curb and flipped to the right, landing on my right hand, shoulder, and knee.  My helmet and head were intact.  A kind woman living nearby helped me with hydrogen peroxide, water, bandaids, and a sit-down on her steps.  Ned picked me up in the car, and it was over.

Except that it wasn’t.  I became depressed for two days after that.  I still lived my life, functioned fine, but I was sad.  Even though I got right back on the bike the next day, it wasn’t fun.

It wasn’t fun because I was riding in the company of fear, and I was being very careful.  I was trying to prove to myself that I could still do it all, eyes only on the road, head cleared of all color.  I took another ride the next day, a brief one with my sister, her kids, and Benj, and it was slightly better, but I was still subdued and grayish.  But because Laura makes me laugh so much, I felt a lot better at the end of the day.

So, today I had enough time and I rode all the way back to where I’d fallen. The familiar tingling pain of pumping pedals up hills bloomed in my muscles.  Gradually I felt my body settle into my bike, with deep pleasure. I rode fast down the hill, just like the other day, and when I got there I spat on the ground.  While riding back home, I found myself singing and psyched, pushing the pedals very hard and fast.  I aimed for a low curb, and took it hard but in good control.  I swerved in and out, on purpose, delighting in the return of my mastery.

I thought about how it is with this kind of high joy, that there has to be a kind of recklessness, a forgetting, in order to fly like that.  Suddenly I thought about Nat, and my fears of going out in public with him, of being hurt by him, and lately, of him getting hurt — on a bike or anywhere else.  The more he moves outward into the world, the more fear I feel, right there next to my pride, my celebration, my elation.

I found myself wishing I could experience that crazy wild fun joy with Nat — with my boys; what would that be like?  Will I ever get to a point of utter blissful forgetfulness going out somewhere with Nat?  I think so.  It has already happened in tiny bursts, on bikes, in the waves, in my dreams.  It’s gotta start somewhere.  But, also, it occurs to me now that it may not be possible to, because they are my children, and I will never be reckless with them.  I have to settle for the watchful kind of happiness, always in the company of the fear phantom, because balancing motherhappiness is just not the same as balancing on a bike.

Sunday, August 1, 2010

Beam me up, Scotty

Yesterday we were up in New Hampshire visiting Ned’s dad and stepmom.  They have a new cat, almost a kitten, the black kind with the white markings.  His name is Scotty, and he is really friendly.  Still, that didn’t mean much to Nat.  As soon as he saw the cat, he backed away, saying, “Nooo.”  His strong and certain “No” is very striking.  Innocent and confident at the same time.  He hears over and over that these pets won’t hurt him, but it just doesn’t get in.  He tenses up and he struggles to wrench himself free, even when I am gently holding his hands telling him it’s okay.

As a little guy Nat didn’t really notice animals.  I remember taking him to farms, zoos, to animal movies:  nothing.  He knew what animals “said.”  He knew Floppy Bunny was a rabbit and that Fuzzy Minken was a minken (monkey? bear? lamb? we just don’t know, but Nat called him Fuzzy Minken and that was that.).

The fear of animals has nothing to do with his autism.  And I don’t think autism has anything to do with his stubbornly insistent fear in the face of all explanations and evidence that he should not be afraid.  I think what’s happened is that this is yet another awakening of Nat’s.  His animal switch went on.  He’s aware and he’s afraid.  He is aware of danger now; I can see it when he rides his bike, the way he swerves to the side to avoid cars.  But to get him to understand that most people’s pets are safe is a hard thing to do.

Max and Ben played a lot with Scotty, getting him to jump up and chase stuff.  Max really loves cats these days, I think because Hannah turned him onto them.  She has four.  They watch kitty videos together pretty often.  Anyway, Max was in love with little Scotty.  We all were, except for Nat.

At one point we were sitting in the living room watching something on tv, and Nat was in the armchair.  Max was standing next to Nat. I became aware that Scotty was moving a lot back and forth because Nat kept fidgeting.  I also became aware that Max had his hand right near Nat. and he would lay it right on Nat’s shoulder, saying, “It’s okay Nat,” every time Nat tried to leap up. Nat would settle right back in his chair as soon as Max’s hand went to his shoulder.  I’ve never seen Max and Nat interact like that, ever.  I have never seen Max being tender to Nat, and Nat responding.  It’s like the brother bond switch just got turned on — in both of them.