Susan's Blog

Wednesday, September 29, 2010


I had a bad day today; not earthquake bad, but icky bad.  Bad enough.  I was crying, and Ned said, “Would an M&M tasting make you feel better?”

I laughed immediately.  Yes it would.  What a great, Ned-like idea.  And now there are all these different types:  pretzel, coconut, peanut butter, and of course plain and peanut.  So we took a little road trip to Walgreen’s and raided the candy aisle.  I was remembering how I used to buy The Pounder, a whole pound of M&Ms, when I was in college.  When my boyfriend Ethan dumped me, the first thing I did was run to Ned’s room (he was my best friend at the time) and tell him that Ethan had broken up with me.  I secretly wanted him to leap up and ask me out.  But he didn’t. He was focused on what I had just said.  Or something.  He just stared at me, while my heart started to dissolve into little pieces.  I guess what I really felt bad about was that Ned hadn’t asked me out, rather than that Ethan had dumped me.  I did what any red-blooded, glucose-addicted American girl would do:  I bought The Pounder and ate it with my friend Lois, while we talked about how stupid guys were.

Well, we all know that they’re not stupid.  Just different.  And yet we can all come together over one thing:  Candy.

Saturday, September 25, 2010

Bundle of Joy

Nat was the first baby the family had seen in a decade or so, the first baby of all of my friends.  I look back and even though I was 27, I was like a girl with that tot.  I had no one to ask except my mom, who lived three hours away.  So everything was a discovery, so many things were a surprise.

One thing I remember being utterly surprised about was the swaddling.  I had no idea people did that.  The hospital nurses would present you with this tightly-wrapped bundle with a hatted head sticking out.  The hats also surprised me.  Everything was different from the cartoons, I guess, which were my only frame of reference.  In the end, cartoons of babyhood turned out to be just as accurate a depiction of infancy with Nat as Brazelton, Leach, or Spock.  (If only Eustacia Cutler had written a baby book:  Living With and Loving Your Autistic Baby. How wonderful!  Maybe I should.  Chapter 1.  Delight in his placid nature. 2.  The Difference Between Stimulation and Overstimulation.  3. I See a Line of Cars…4.  Revelling in Routines.  5.  Sesame Street:  Who Cares?  6.  Finding  Other Special Needs Parents to Hang With.)

Being too soft and well, clueless as Nat’s Mommy, I couldn’t even swaddle properly. It seemed weird to me.  I didn’t like it.  I wanted to feel him, not wrap him up.  The blanket ends always came undone.  Ned had to do it.  He was a champion swaddler.  He would wrap the boys into tight footballs and pass them to me like an eager quarterback.  It was explained to us that the swaddling calmed the baby, made him feel better from the pressure; it was womb-like.  That made sense to me. I imagine now that swaddling felt really good to Nat, if it’s true what they say about deep pressure being a relief to many with ASD.  I think deep pressure is a relief to many of us.

Over the years I forgot about the beneficial pressure from swaddling, and as Nat graduated from OT and Sensory Integration Therapy (more accurately, was kicked out for being too old or too aggressive), we forgot about deep pressure, and how well he responded to being held that way.

As an adult, Nat is always on the go.  He burns hot and fast.  Sometimes that spills over into his emotional state.  Lately we have seen the return of his anxiety, which does seem to be somewhat seasonally inspired.  Autumn, even a gorgeous summery autumn like this one, sets him on edge.  I am not surprised; it does that to me, too.  The air and the light is too sharp, like glass.  Everything has sped up:  the pace, the change of leaf colors, the routines.  It may be that Nat enjoys the routine of fall, but that it’s “too much joy,” something I’ve mentioned in earlier posts.  Too much joy for Nat means it’s just too good to bear and it flips over into anxiety.

I got the weekly call from Nat’s teacher and I was not surprised to hear that Nat’s been getting worked up about routines, particularly other people’s routines.  He is a yenta of the first degree, his nose in everyone else’s business:  “Mommy will get dressed;” “Daddy will take off his shoes;” “Ben will eat breakfast;” “Max will wake up” (good luck with that, my son)  At school he watches and waits for everyone to do what they’re supposed to do.  We are all slugs, laggards in Nat’s view.  He’s fast and efficient; what’s wrong with the rest of us??

I was interested to hear Will, Nat’s teacher, say that what he has found works to help Nat be less anxious is to be firm with him.  Confident, not soft.  Direct.  Tell him it is not his business, that we are not talking about Eli or Sam right now.  He only has to think about Nat, not Max, Ben, or Mommy.  (And people say autistics don’t notice anyone but themselves!  Hmph)

I told Ned that we are going to have to try to be more consistent and firm with Nat, that it will alleviate his stress and calm him down, even though it seems counter-intuitive.

But not to Ned.  “It’s just like the swaddling,” he said.  Ned knows — has always known — that Nat just needs to be reigned in, and held tight.

Friday, September 24, 2010

Eunice Kennedy Shriver Day is 9/25

Tomorrow, September 25, is Eunice Kennedy Shriver Day, a new global celebration which is dedicated in her honor to the act of inclusion, in particular, inclusion of those with intellectual and developmental disabilities.  All you have to do is think of ways, large and small, that you can connect with someone with ID or DD.  And then — just do it! Inclusion can start with just a new way of thinking, and if you let that lead to personal connection — well that’s all there is to it.

Here is what I did:

The golden welcome-back aura of September brings with it the opportunity of new beginnings and second chances.  But I find myself uncomfortably challenged by that. My oldest son is severely autistic, and our emotional calendar—to say the least – does not always match up with other people’s.  So I have to admit that when I first heard about the upcoming “Eunice Kennedy Shriver Day,” planned for September 25th, I kind of sighed. This was to be a new, international day devoted to acts of inclusion of those with intellectual disabilities. Sounds good but how, exactly, am I to do it? A simple trip to the ATM with Nat can be a cause for anxiety, because I know he is going to want to walk around and around that crowded little room, waving his hands and whispering to himself. Yet I bring him because I know he loves being among people, even though it looks like he’s not even noticing them. Is that an act of inclusion?  I suppose it is, because I bring him along even though I don’t have to.  Somehow, I don’t think that this is quite in the spirit of EKS Day.

But I wasn’t thinking about any of this the other day when I took Nat to the hospital for a routine EKG.  Around once a year we go in and he gets tests like EKGs and blood labs, because of his serious medications.  And every time, I sit with him, watching him closely and holding his hands.  That’s probably unnecessary at this point, now that he’s twenty; it’s just that there was this one time – maybe ten years ago –  when the phlebotomist stuck him and Nat twisted around, shouting, “I want to bite you,” aiming his teeth at the man’s wrist.

Shortly after we registered with cardiology, a woman came into the waiting room with her teenage son.  They checked in, then sat down to wait.  She chose a magazine, and soon the technician came out and called out the boy’s name.  His mom barely looked up from her magazine as he left for his EKG.  I felt a small twinge of envy for this normal mom and her normal, independent son, but by now I am so used to those little pinpricks of pain that it barely registered.

I got ready for our turn. Maybe that was when I got the idea – a fantasy really, of Nat going into the EKG by himself. He was calm today, after all.  I just get scared of what could happen, what used to happen, and so my tendency is to do everything with him, to avoid trouble.  But was that fear based in reality anymore?  Was it even fair to him?

So I did the quick mental calculations of risk that I have become so adept at:  EKGs are a  simple procedure; you take your shirt off, tape on the sensors, turn the machine on, peel off the sensors, and put your shirt back on. All of five minutes.

“So Nat,” I said.  He looked up, wide-eyed.  Nat gets anxious about conversation.  “Do you want me to go in with you for the EKG, or do you want Mommy to stay out here?”

“Mommy stay out here,” he said immediately.  Then he added a firm “Yes.” I had my answer.  He didn’t want me with him.

The teenage boy soon came out and his mom stood up and gathered her things, completely oblivious to the miracle of nonchalant normal she had just experienced.  The same technician called for Nat.  He leaped to his feet and slipped quickly past her, waving his arms and talking to himself as always.  The tech didn’t seem to notice; she didn’t realize he was anything but a guy going in for his EKG.

But I could feel that old, heavy responsibility pushing down on me, from twenty years of protecting Nat from the world and – I realized just then – of protecting the world from Nat.  So of course I felt it was my duty to inform her: “He’s autistic – but I’ll be right out here…”  I said, almost apologetically.  As if I had no right to send Nat in there alone; as if he had no right to try out independence on his own terms.

“It’ll just be five minutes,” the technician replied.  So I sat there waiting, glancing at magazines that I wasn’t relaxed enough to read.  And then, indeed, five minutes later, Nat burst back into the room, talking and waving; all was well.  The technician stood there for a moment, smiling at us from the open door.  I could have cried with happiness and pride.

I’ll never know what it was like in there for Nat and the EKG technician.  I guess I don’t really need to know, any more than the other mom has to know about her son during his five minutes. But what I now know is that inclusion doesn’t necessarily come with a lot of fanfare – sometimes a meaningful act of inclusion may only last for five minutes.  When Nat jumped out of his chair and into the examining room without me, shucking his isolated, protected existence for a few moments, that was a move towards inclusion:  his own.  And what made it work was that there was someone smiling and waiting for him when he got there.

Thursday, September 23, 2010

Read it and leap

Yes, indeed, children with ASD do grow cognitively over time; you just have to know how to recognize it. The link below says it all. And  I’ve always said, it’s not the people with ASD who have the problem knowing things about life; it’s the tests, the researchers, that are skewed towards neuro-typical ways of measuring knowledge.  Even and especially the most “severe,” i.e., the most autistically-involved individuals have what I think of as a communication clogging, a language-flow problem.  It is not a blown-out brain, it is not about stupidity.  Those words merely reflect the assessors inability to see what is there, but hidden to us.  (And please note that I am not using the tired old metaphors of autistics being mysteries, enigmas, or puzzles.  I am saying that our inability is just that, and we need to figure out a way for our autistic loved one to “speak.”  Yes, it may not happen in this particular lifetime.  I hope it will.  Remember, it ain’t over til it’s over.

Mark my words, that the more varied communication tools become available for those with ASD, the more we will see research like this, that show that it is we who have not understood, not those with ASD…

Sunday, September 19, 2010

Open your eyes

The other night I gave a brief talk at an organization called Vinfen. The oddly-named Vinfen offers services, residences, and supports for those with developmental disabilities throughout Massachusetts.  They chose their name (a contraction of the street names “Vining” and “Fenwood” in Boston, where the organization was founded) because it would have absolutely no stigma to it.  I liked Vinfen before I got to know the place, because Nat had gone on some fun social outings with some Vinfen clients who live nearby.  I liked Vinfen even more when I heard about their thoughtfulness around stigma, and how it extended to everything they offered, including how they named themselves.  That night the talk I gave was about stigma, negativity, and the baggage we carry around about ourselves.  The difference we experience when we let it go.

I’ve talked and written about this concept a lot.  In the Survival Guide, I tried to make changing perspective a central theme, that the more we allow our vision to be clouded by negative preconceived notions, the less happy we will be.  I have found time and again that going into something with clear eyes, as much as possible, is mostly a good thing.  The truth is multi-faceted anyway.  Why assume you have the truth in your grasp, when things shift and evolve?  Evolution is the way of all things, from the way Man came to be, to the way you and I came to be.  Cells die and regenerate, dreams die and are reborn, and our own selves reshape according to whom we meet and what we do each day.

My most unhappy moments are when I am stuck, mired in some thought or feeling that will not move forward.  I have always been prone to obsessions, and from time to time, I have been trapped in one obsession or another.  The terrible thing about obsession is that you know in your mind that things are one way, but your gut, your other parts, will not see it that way.  Obsession is one area in my life where my thoughts have no power, my intelligence loses its ability to light the way.

Lately I have been — ironically — thinking a lot about obsession and I see suddenly that it is related to baggage and negativity.  For example, what I tried to illuminate at Vinfen the other night was that by breaking free of the ideas society foists upon us about disability, we can find a new truth.  We can evolve our view of disability by breaking the pattern of destructive thinking.  We do that by deciding it is okay to do that.

During one of the darkest periods of my life, I eventually learned that the only way out was by changing my behavior.  Yet at the same time, I was in therapy, where I was learning all about why this was happening to me.  So I don’t know which came first, the chicken or the egg, the behavior or the awareness, but there was one beautiful shining day when I unstuck myself.  I remember the moment.  I was walking somewhere.  The feeling came over me, to backtrack.  That horrible sweating panic that I had to.  But I did not.  I walked a few steps, realized I was walking forward, and that maybe I was going to do it, to be different this time.  I kept walking.  Soon it was just too late to go back.  I walked, and that was that.  After that, I had that experience to draw upon, where I could say to myself, “You didn’t go back, and you were okay, so you don’t have to go back now.”

The thought followed the action.  But the action was born of great reflection.  And so for years I have been thinking and articulating this idea that we don’t know, we really don’t know all that is true about our children and their disability, their potential.  I am constantly being splashed in the face by Nat’s complexity; he gets me unstuck every time.  Just yesterday, in Starbucks, Ned was asking Nat, bugging him for a bite of his chocolate chip cookie.  These days Nat just does not like to share.  He said, “Nooooooo.” I wondered if he would share with me.  I knew he’d say no, but I also kind of knew that if I begged him or something emotional, he’d say yes.  At least, I hoped he would.

So I asked him for a bite of his cookie:  “Nat, can I have a bite of your cookie?”


“Nat!  What if I cry?”

He quickly thrust the cookie towards me, saying quietly, “Bite, yes.”  I laughed in delight and told him that I was just kidding.  Perfect.  I knew it would happen that way.

Of course we can predict our children’s responses to things, of course we know them the way we know the sun and the ground.  And yet we don’t know them, because there is always the surprise, the growth, the change.  One day soon Nat might be back to sharing with everyone, no guilt necessary.  Like our own bodies’ cells, our children are constantly remaking themselves, reaching tendrils towards the sun.  There cannot possibly be a One Truth about them, because nothing in this life is static — except for our own limited perceptions.

Friday, September 17, 2010

Stress Less

My friend Thea Singer has been a journalist for years, for Inc Magazine, Boston Magazine, The Boston Globe, and The Boston Herald. She teaches at MIT.  Thea is brainy and brilliant and also petite and fiery.  Take a look at her latest piece in The Huffington Post, on stress and addiction.  Her book, “Stress Less,” published by Hudson Street Press, will be out next week, towards the end of September.  Stress Less links aging and stress in a way that’s never been done before, and Thea presents it in a very readable, accessible, thought-provoking format, using her stellar researching skills.  If you have stress in your life, (uh, hello?  Who doesn’t?) and you feel you ain’t getting any younger, buy this book today.

Wednesday, September 8, 2010

I wish

I wish I knew, I wish I knew

What makes me me what makes you you.

-Cat Stevens

I’d thought myself too old in this regard.  So often I feel like I’m supposed to be a role model.  Beyond it all.  Well, not beyond it all, but wise and easily recovered from it all.  I’m the future, some people feel.  But I forget that I’m also the present.  And the past.  The usual state is that the waves of pain subside, it feels like an eternal low tide.  But when it rises, it has the strength of twenty years.  I fear the ocean.  I love the ocean.

There will be a flash of something, something I forgot to do, something I’ve lost.  A song, forgotten in my shuffle. It sends me back to you, my darling boy.  I can’t help it, please forgive me, I feel heartbroken today, because I just wish I could talk with you.  Really talk.  Hear your thoughts.  Have you want me to hear your thoughts. I wish I could make you less alone.  I wish I knew how you felt about life, how much you know.  I feel that I know, but just once, I want certainty.

There is no blame here, no one’s at fault.  That’s what makes it so hard; no one to be mad at.  I like to know why and who.  But I can’t.  I have to go by my heart, by the air, it slips through my fingers.  Strength is about having strong fingers.  Strong heart.  But how can a heart be strong and soft at the same time?  How can a person be so silent?  What happens to the life teeming in your brain?  Where does it go?

I want it to come out.  I want to hold it in my arms.  I want it to come to me.  I am tired.  You’re so alive.  Come to me.

Tuesday, September 7, 2010

Old House, Young Men

It was past 11pm, so I was fast asleep.  Ned heard the screen door creak open, but then there was no other sound.  He waited for the sound of the key in lock, a long, drawn-out cranky conversation between old metal teeth and grouchy tumblers.  Nothing came.  He went downstairs, figuring it was Max, home from his girlfriend’s house, with no key.

He found Max out on the lawn, throwing things up at Ben’s window, which was lit up.  “I figured Ben was awake, because his light was on,” Max explained.

Ben was awake, but he had not gotten out of bed because, as he put it, “I heard the noises, but I just thought it was stuff breaking.”

Wednesday, September 1, 2010

Give me a break

I danced tonight; it had been about six weeks since I had done it last.  I was beginning to think I was done with it, until yesterday when I was invited to perform for an organization in town.  I was psyched about the invitation.  My response told me that I was not done with dancing at all, just coming back from a big break.  That was a relief, because I was feeling really sad about being done.  But it just had not seized me the way it always had before.  I didn’t want to force it.

So tonight it was there again and I went upstairs and changed; I put on the deep red fringed Turkish one, my most recent acquisition.  It fit better than ever, probably thanks to all the bike riding I’ve been doing.  I felt no pressure to have an intense workout like I used to; all I wanted was to perform, imagining that I was at my performance downtown.  I haven’t even said I’d do it; I have to see how I feel about it.

The dancing was fabulous.  I chose all old classics, because those are much more conducive to performance.  The new Egyptian pop stuff is more dance party music.  But George Abdo, Eddie Kochak, and Samy Farg all have that old world feel and they always have an interesting, definite finish, rather than a fade-away.  All my moves were coming back to me, and I felt relaxed and also energetic.  In fact, it seemed almost as if I were better than before, even though I’d had a 6-week break.

Which made me think about Nat and the way he comes back to things after long breaks.  It is so weird to think about his first forays into sports, and how disappointing that was.  Challenger T-Ball and Viking Soccer.  Nat was too spacey, and the coaches just didn’t get him.  They were more interested in the kids who were better at it.  I guess I can’t blame them, but then again I really believe that kids sports should be about teaching/learning first, and beating everyone else second.  Maybe what we have here is a mother who just doesn’t get sports.

When I think about it, our very first foray was when I took Baby Nat to that pool at the Y for the mother-tot swim class.  Where he just floated and stared at the ceiling, poor darling.  And me, poor darling:  I just wanted to cry over my odd little baby.  And now, look at him.  He’s a champion swimmer, a gold medalist.

I get Nat.  At least now I do.  I learned from those sports debacles that it was a matter of trying again in a year, and some other sport.  Some other coach, some other venue.  Not to get discouraged and chuck the whole thing, but to regroup and find a different group.

And the thing is, he comes back to his sports better than he was, each time.  It doesn’t seem to matter that there’s a break or a rest — for either of us.  Maybe that’s actually better:  to have a break, and not to have to think about it for a while.  Then, let it come to you, naturally.  A break is good.  Down time.  It’s just a little thing Nat taught me, but sometimes I’m just not paying attention.