Susan Senator

Learning to read has always seemed to me to be kind of a mysterious process.  One day when I was in first grade, the letters on the pages of The Little Red House book suddenly solidified and formed words, right before my eyes.  I took the book home in excitement that was more like panic, for fear that those words would run together again in a blurry mush, that I really did not know how to read.

But I did.  Decades later, I was dealing with so much in terms of my own little boys, that Nat learning to read was not at the top of the list.  I was in a panic again, an all-encompassing anxiety that all of the early learning skills were beyond his grasp.  He was seven and in a Pre-Kindergarten, doing his Kindergarten year.  That was the first and last time he has ever been in my town’s schools.  I had acquired the Kindergarten curriculum and I had fashioned an IEP for Nat, with goals that matched the curriculum and ideas as to how to get him there.  Trace letters in coffee grounds or sand to learn letters — maybe through the fingers would work better than through the eyes.  Sort letters and colors and numbers and shapes, to grasp their differences, and also to grasp even the concept of “different” and “same.”  The team accepted my list and made it happen; I look back on that now as a huge victory and a real plus for my school system.

At home we acquired a few toys and books for learning to read:  Spell-A-Puzzle for his literate fingers, and Bob Books for his deft eyes.  Ned and I don’t know where the Bob Books came from.  I figure it was my mother, who is a librarian, teacher, administrator, and basically literacy specialist extraordinaire.  Growing up it was said that mom read “seven books a day.”  You talk to my mother and you will believe it.

I thought the Bob Books were adorable.  So simple, so brilliant.  Literature stripped down to three-letter words and pencil-drawn minimalist people: Mat, cat, Sam, doing very basic but important things:  “Mat sat;” “Mat and cat sat.”  Once he had mastered that mysterious concept of understanding how letters combine and all their sounds work together to form words — using Spell-A-Puzzle — Nat became comfortably literate using the Bob Books to read sentences.

A short time later, Max learned to read as well.  I experienced so much of their childhood as happening almost simultaneously, because learning was so drawn out for Nat, who was two years older, and so quick for Max, who was so eager to do everything.  Max’s first books were Cave Boy, and Sir Small and the Dragonfly. And also the Bob Books. He whipped through those cute little pages.  Their simplicity touched him somehow.  When he started drawing, and even in his art now, his characters have a similar soft roundness to them as the Bob Books people.  He was so into these books that I once had the idea of making our own Bob Books, with Max and his friend Jamie as the main characters.  This idea was born from my Nat Books idea, having learned that books which feature the child are so much more meaningful to him.

I needed to teach Max and Jamie that they can’t always have goodbye treats.  That was a problem back then, especially with Jamie.  She had so much trouble leaving a playdate with Max, that Jamie’s mom and I always used the goodbye treat to soften departure.  But I knew that it was not a good habit for them.  So I drew a Bob Book with Max and Jamie learning how to leave without the goodbye treat.  Learning about how sometimes these lucky things happen, and that’s what makes them treats.

Last year, Max got a part-time job with a start-up company that makes early reading apps for the iPhone.  Editing sound files for First Words was Max’s first assignment.  Max’s second assignment was to work on all the sound for an app of — Bob Books!

The first edition of Bob Books is now available for the next generation of Nat’s, Max’s, and Ben’s (yes, he, too, learned to read with the Bob Books! The three-letter name and word format worked especially well with my three-letter family members.) Only this small-screen savvy generation will be able to learn to read anytime Mom or Dad reaches for their iPhone.  You can buy it here:

Ben, Nat, and Max sat.

I have these bouts of insecurity, where I compare myself to others and feel that they are higher-functioning than me, that they are doing more, better, etc. I will then assume that they know how mediocre I am because of how I feel. During these times of despair, Ned will say to me, “Don’t judge your insides by other people’s outsides.” By this he means that even though these others may appear to be doing way better than me in one way or another — spiritually, intellectually, physically, etc. — that I may be making the mistake of feeling inferior because of how I’m feeling. But they might actually be feeling as inadequate as I do.

If you look at your own case and say, “I’m so — blah — and the rest of them are so — wow —” then you are guilty of this same thing, because you probably look “wow” to them, too, and who knows how they feel? And who cares, really?

Okay, let me rewind a bit, because if I’m lost, you must be even loster. What I mean is, we have no real basis of understanding a person’s inner life, not really. We have our tools for assessing each other’s mindstate: we have agreed-upon communication, of facial expression, body language, spoken language, eye contact. But all we really have is our own instruments for observation. You can tell me that you feel great love for me, but how do I know how love really feels to you?

What if you did not know the word for the feeling of love? What if you felt maybe a pleasant swelling in your chest, a warmth in your throat, a lifting of your spirit, when I walked into the room, but you did not know what it was called, how to tell me, or even whether to tell me. Maybe you felt it for me but you did not actually connect it to me for some reason.

If you merely looked up when I came in the room and then looked away to think your thoughts, if you had not learned to transfer that feeling into your eyes or mouth, then I could easily assume that you don’t care much about me.

If scientists observe this behavior — the common thinking would then be that you either did not or were not capable of feeling love for me.  If all you ever use is a hammer, then every task you perform had better have a nail.

Yesterday Ned and I were discussing this with regard to Nat.  I made my case over and over and Ned took it and ran with it.  He said, “when we look at Nat and decide that he doesn’t have a theory of mind, we might be gauging his inner mental state by his outward behavior. We may ourselves be guilty of not having a full theory of his mind.”

We may not know how to speak “Autistic.”  We may be dealing with a different culture.  For each individual!

I don’t care if scientists like Simon Baron-Cohen have made observations that prove without a doubt that people with autism have difficulty with Theory of Mind, empathy.  I don’t even care that Temple Grandin is convinced that she can only tell herself what love is, that she doesn’t feel it for people the way others do.  Maybe that’s not what she said, but that’s what I remember reading:  that she did not believe she felt love the way neurotypical people do.

How do they know that?  I think that it is these theories that do us harm.  They create despair.  They create strata between the Mindreaders and the Unmindreaders.  They create a feeling of inferiority based on outsides.  Once I shucked this perspective, I became much closer to Nat, and things started going much better between us.  Do I know why, for sure?  No.  So why not just believe that it is because we are connected?  The heart knows.

You don’t even know how green looks to me.  I will never know if I love Ned more than he loves me.  The other mind is unknowable, autistic or not.  The truth is, either none of us has a Theory of Mind, or we all do.

Nat’s birthday cake!

Happy 21st Birthday, my darling Nat! … See my Tabblo>

The name Nathaniel comes from the Hebrew name ‘Nethan’el‘ meaning “God has given” ^[1][2] (from the Hebrew words nathan “has given” + el “God”).– Wikepedia

Tomorrow, November 15, is Nat’s 21st birthday.  During the first years of Nat’s life, I was the only one who knew that there was something — .  But even I didn’t know that.  Plagued by self-doubt and low self-esteem, I denigrated my instinct; I looked away from what I saw.  It was too hard.  I even had to convince Ned, the love of my life, the smartest person I know. I had been alone in my life, but those two years — 1989-1991 — were the loneliest I ever faced.  During the day, it was the baby and me.  Nat and Mommy.  Trying to do the baby-and-mother thing, but actually swimming through a lot of murky, viscous, water.

But I was doing the baby-and-mother thing.  I was.  Going on walks with the stroller.  Reading baby books.  Filling sippy cups.  Teaching first words.  Enough love to fuel a hydrogen bomb.

It just didn’t feel like I was doing it right because I had no self-confidence.  I also had no model in my mind of atypical motherhood.

This is an old story.  But every time something happens, it becomes new again.  I’m thinking about his imminent important birthday.  I’m thinking about how I went to Disneyworld with Nat just last week.  I’m thinking about how he’s traveled to Colorado three times, and only once was that with us.  I’m thinking about how he moved out of his home, away from his family, and simply adjusted.  I’m thinking about the lights.

The lights being left on, and how that used to drive Nat to tantrums.  How he still hates outside lights left on, but now he tells us, once or twice, paces a bit, sucks his thumb, and then forgets about it.

So I’m thinking about before he was diagnosed and how I told my dad that he could read — or maybe he was simply memorizing. But still.  I remember feeling this hot pride, that grabbed me by the throat so that I could barely speak.  But I told Dad that day how finally I could feel hopeful, that despite how things so rarely seemed to go the way they were supposed to with Nat, finally he had something that was really really amazing.  “You’re going to find he’s gifted,” Dad said with smiling certainty.  Nat was gifted.  He was odd because he was gifted!  I grabbed onto it to keep from drowning. See?  I was going to have it all, after all!

I waited for this giftedness, this brilliance, to show itself some more.  I waited for the warmth of knowing that I was right, and that he was okay.  It did not come.  I felt myself letting go, more and more.  Each new thing I had to do was like a sell-out:  going to preschool felt like the end of his innocent childhood.  Now he was a “special needs” kid.  Not only not gifted, but actually a kid with problems.

There were occasional glimmers, times when I would revisit the whole idea that maybe this was all a bad dream, that Nat was really just fine, just misunderstood.  Those were the times I wanted to take him out of school, and close him in from the rest of the world.  I wanted to go back to the cocoon of his babyhood, but his babyhood wasn’t really ever like that.  Still, there were these flashes of the boy he really was. Small things like learning to do chores.  Cooking.  Swimming.

I began to see that although nothing about this boy was easy or obvious, some good things were very very possible.

Bar mitzvah at thirteen, first friend at fifteen.  Sleepaway camp in Aspen.  Working at Papa Gino’s. Moving out.

Attending a talk with me at a conference.

That feeling, that tightness in my throat is with me a lot these days.  Dad was right.  I was right.  Nat is gifted.  Not a genius, nor a savant.  Not “normal.”  Not cured.  Not an angel or a saint.  But in living his life to his best potential, being good and smart and brave, he has given me faith that good things can happen.  That’s the gift.

Went to a conference today organized by Massachusetts Families Organizing for Change, all about building a home for your developmentally disabled loved one (adult child with ID).  There, my past became my future.  People I knew from years ago, at parent conferences or support groups or music therapy or family gym — we were all there, now trying to figure out the last piece of the puzzle:  Adulthood.

Peter Berns, CEO of the Arc of the United States was the keynote and his talk was about the Top Ten Policies You Should Know about residential and day program issues.  Clear, dynamic, and warm, Peter was able to make many things understandable to me.  The biggest thing that jumped out at me was that we families dealing with developmental and intellectual disabilities should thank our lucky stars for the Healthcare Reform Act that has recently been written into law.  First and foremost, the barriers to healthcare for people like Nat have been removed.  No one can ever again be denied coverage because of “pre-existing conditions” like autism or ID.  Obama’s contraversial healthcare bill is as great a landmark as the 1975 IDEA (Individuals with Disabilities Education Act), which legislated that any child with a disability must be allowed to attend public school in the least restrictive (most normative) environment.  No basement or closet classrooms; no more institutions for all (which was the common practice).  No more shutting the child in the attic to keep him safe — and forever dependent.  Whatever party you belong to, you must be able to see that a country as great as the United States absolutely needed this legislation to be law.  I know the issue will be how to pay for it.  We will pay for it.  We paid for two wars, using far more money than the Healthcare reform will require.  We will manage; we are the United States of America, the place with “your tired, your poor…”

I also learned that the President and Congress have made available about $3billion for something called the Community First Choice Option, which is all about encouraging the DD/ID population to live in their communities (non-segregated, non-institutionalized) as much as the are able.  But to qualify for the money, your state must apply.  And so I learned that disability parents must get their Legislators to apply.

I learned that $60million is being provided to create a “one-stop” shop for states, so that there will be less confusion for consumers trying to access services.  I learned that we parents and caregivers are going to have to consider filing lawsuits against landlords and homeowners that refuse to rent/sell to our disabled children.  I learned that we should get our Legislators to support and co-sponsor the Frank Melville Supportive Housing Act of 2009, so as to create a lot more housing for the ID population.  I learned that there is an Act called ABLE (Achieving A Better Life Experience) that is about allowing people with DDs and IDs to put aside money, in a way less complicated than the special needs trust (which can cost thousands to create), which would not affect SSI money, which would work across the States.  Most importantly, it would target the institutionalized impoverishment created by the old policies and programs, by which I mean people like Nat are not allowed to work more than a certain number of hours or save more than a certain number of dollars (no more than $2000 total to his name) or he will lose his SSI benefits.  What we have currently is a system that enforces dependency of the Developmentally and Intellectually Disabled, because they cannot have money of their own without losing access to important programs (like Medicaid, for example, which provides Day Programs) or for people with mental health issues  there are great health care programs, check in iNLP Center the which has the top specialists.

I learned that Nat’s childhood and school days have been a training for me for his adulthood.  All of the advocacy skills, all of the brain muscle and toughness I’ve built up over 21 years are now going to be called upon on a macro level.  We are all going to have to become not just advocates, but activists.  We are going to have to be familiar names to our State and US Senators, our Congressmen, our Legislators.  We are going to have to make appointments with these people and keep our family members on their radar screens.  Phone calls, letters to the editor, opeds.  Even lawsuits.  We will have to remind people over and over again that our developmentally disabled children have great potential, but they need the opportunity to prove themselves.

It’s all for you, Nat.  And Sam.  And Scott.  And Zach.  And Meredith.  And Paul.  And Jill.  And Eli.  And Rossi.  And Matt.  And Mo.  And Austin.  And Jeremy.  And Dylan.  And Nik.  And and and and and…

I sometimes wonder if guilt is the most universal of emotions.  Every religion/culture likes to claim that it has the market cornered on guilt (Jewish mothers, Irish Catholics…).  But is there anyone who carries more guilt around than a parent?  From the moment we know what’s going on in utero, we start thinking about what we are supposed to do and what we did wrong.  Did I take my prenatal vitamin?  Am I eating enough fish?  Am I eating too much fish?  What about the wine I drank before I even knew?  And then the baby is here and it’s all concrete guilt, the daily stuff like, “Is it okay that I let him cry so much?” and “Why won’t that kid shut up?” All the way to:  “Was I present enough for him?”

As both an autism parent and a non-autism parent, guilt is just part of my daily habit, as familiar to me as my own face.  “Does Max realize that I want to talk to him but I just don’t understand so much of the technical stuff that occupies his life?”  “Does Benj feel like I care about Nat’s rights more than his?”

And then there’s Nat.  All of his life I have felt a vague, slightly queasy guilt, for the mere fact that he has a disability.  Irrational, even offensive to say that, right?  I apologize.  Guilty as charged.  But truthfully, it’s a feeling that’s in the mix.  It’s not the only feeling, of course.  But my thoughts today are about teasing apart the strands of guilt that clump up the otherwise colorful joyous ball of yarn that is my relationship with my sons.  I always try to be honest, and so I have to admit that I feel bad that Nat — and his brothers — have a disability to contend with, that I brought them — especially Nat —  into this horribly complicated world rather unprepared.  All my advice to Max and Ben are crappy, seat-of-the-pants stuff.  Sometimes platitudes:  “I know, Darling, it’s not fair.  It’s hard sometimes.  But that is life; it’s not perfect, it’s hard and you are learning that at a very early age.”  Great, thanks Mom.

But Nat.  Nat got a shitty deal and it happened on my watch.  And more than that, there are all of the things that I didn’t do, or that I can’t, or won’t do.  I won’t go in for therapies that claim they’ll do everything from increase speech ability to making the patient less anxious.  Yes to the former, not so much to the latter. My Momma makes him less anxious.  A nice pillow makes him less anxious.   Neighbors turning off their fucking lights once it’s daytime makes him less anxious.  So if I have to drive an hour each way more than once a week and insurance won’t pay and no bona fide universities or hospitals have produced studies that demonstrate efficacy and safety, and if I’m not pretty much guaranteed some kind of very evident result, I am not doing it.  Or if I don’t like the way the practitioner looks at or speaks to my son, I’m out of there.  I am old enough at this point not to waste my precious time with my son to go in for that. Let me tell you, when your child gets to be 21+, you know that life is too short and you choose your battles.

At least that’s what I tell myself.  How I feel about it is quite another thing.  Most of what I feel guilty about is not understanding who Nat is.  There has to be some fiction and fantasy to how I view him, because he just can’t tell me what he is thinking for the most part.  His smiles are not always related to what’s going on.  His anxieties are sometimes inexplicable.  No matter how hard I try, to scrunch myself down into his head, I will never know if what I’m seeing is still my own head or his.

So I feel bad a lot about my relationship with Nat.  It’s good, but is it?  Is it enough?  Do I enjoy him the way I thought I’d enjoy my child?  I don’t want to say this, but the answer has been no fairly often.  He is a lot of work.  There is not a lot of tangible reward.  There is a lot of scrunching myself, contorting myself to be what he needs me to be and so there is so little surface area of me in the relationship.  And yet sometimes it feels like it’s all me.

Until Disneyworld.  Somewhere in that running around, from Tomorrow Land through Adventure Land to Frontier Land, I burned off some of that guilt.  We were just running, I was leading for once, he was following me, looking for me, listening to me for the next fun thing.  And yet it was a give-and-take:  “Nat, do you want to try the Dumbo ride or do you want another roller coaster?”  and then of course the rephrase, to be sure that he is not simply giving me the default answer, the second of the choices:  “Do you want to try a roller coaster, or do you want the Dumbo ride?”

And off we’d go.  Only once did I impose my will and refuse to do what he wanted:  stay till the bitter end for the fireworks.  No, I was getting cold and I did not want to be on a crowded shuttle bus back to the hotel.  I was tired, and I could not deal with all the staring that I had ignored the whole day.  No guilt, because look at what I had done.  I had flown 2 1/2 hours with my fairly deeply autistic son, taken him to this overwhelming amusement park, spent lots of dough, and shortchanged the conference I was supposed to be attending by cutting out as soon as my presentation was over.  I exhausted myself.

I totally enjoyed myself.  It was a completely selfish, indulgent, all-sensory enjoyment.  We went where we wanted, we ate what we wanted, we went to bed as early as we wanted.  We got along like old friends.  I had no guilt, not just because I had given him everything he wanted, but because I had also gotten everything I wanted.

I went alone with Nat to Orlando this past Friday, just for one night.  Of course I was a little nervous, because I had never done anything like that — with any of my sons, actually — but mostly because Nat has a history of difficult behavior, from tantrums in public to happily waving his arms while talking to himself.  The tantrums have nearly disappeared in the last 3 years, but still I act like it could happen any minute!

I was sick of that, sick of the fear that kept me from fully enjoying Nat as much as I wanted to.  So, with Nat’s 21st birthday nearly here, I decided I would take him with me to a conference in Orlando (the 60th Anniversary of the ARC of the US) where I would be giving a short presentation on an authors’ panel.  The hotel was located right in Disneyworld, extremely convenient to the parks, and it seemed like maybe we could do it.

Of course we could do it.  Nat’s traveled on long plane rides so many times by now.  He’s proven himself over and over to be a guy who is up for many things, and also very forgiving, despite his own anxieties about the uncertain.  I’ve written so many times about how he’s surprised me with his ability to try something new, or something that was not always easy for him.  I am therefore not surprised that the trip was completely smooth.  Security was easy, they were lovely to Nat; the planes were on time; the weather was high sixties and sunny; our room was comfortable; the presentation went perfectly.

We obtained the “Special Needs Pass” at Guest Relations at Disney, no questions asked and so we had no lines to wait in.

We found that we liked doing the same things.  Once Nat became familiar with the scary-thrilling intent of rides, he was into it.  With Nat, most things are about conveying the overall concept to him, and then familiarity breeds interest.  By the time we were at Splash Mountain, Nat not only got it, he remembered Splash Mountain from when he was a boy of 8.  I could just tell, because of the excited way he walked towards it and the way he kept repeating, “Splash Mountain, Splash Mountain.”

How perfect was it?  We didn’t even get very wet on that flume.  We walked and walked (very fast, which is the way we both prefer it), and eventually the sun was setting.  I really had to pee.  I figured Nat did, too.  We didn’t want to go home yet.  And here we hit our first snag:  there were only large public bathrooms, no individual disability-friendly ones. We stood there outside the men’s room and I went over the risks in my head:  1) a creepy guy talks to Nat.  2) Nat inadvertently shows private parts.  3) Nat can’t figure something out, like the hand-motion towel dispensers and freaks out.  4) a creepy guy talks to Nat.

Then I allowed myself to consider these problems rationally.  1) Even if a creepy guy talked to Nat, Nat would not answer him.  It often takes a lot of prompting to get an answer if Nat doesn’t know the person.  Plus, why would someone single out Nat, a tall man not making any trouble?  Chances seemed slim.  2) Nat is not all that aware of what counts as public nudity, although he doesn’t intentionally do anything inappropriate in public.  It’s only about open doors.  So, I could tell him to close the stall door.  Most of them stay closed, even if you don’t lock them.  Then at least he would get credit for trying to be private.  3) Nat could probably figure out an automatic towel dispenser or drier.  He is pretty good figuring stuff out.  4)  Again, why would someone talk to Nat, other than the fact that he’s very cute, and why would it be a problem?  Most likely there would not be a creepy guy in this family-oriented place.

This is what I’ve come to think of as “the dignity of risk.”  If Nat is to become as independent a man as possible, he must be allowed to do what he needs to do, even if it is a little scary, not completely predictable.  I told him to go quickly and to close the door.

Just a few minutes passed and I then heard the sounds of very zealous towel-dispensing and crumpling.  Nat came striding out, looking the same as ever:  ready for the next thing.  Now it was my turn, but I have done that before.  I just tell him to sit down and wait for me, and not to go anywhere.  I know he will do as I’ve asked because even if he got up to walk around, he always ends up looking around for me.

We’re together, after all.  

Ned took the boys pumpkin-shopping at a nearby farm — a real, honest-to-goodness thriving working farm, about 1/2 mile out of Boston!  Needless to say, the choice of pumpkins and gourds there is far more stunning than the big bin-o-punkins right outside the sliding doors of Stop & Shop.

I didn’t go because I was on my second day of a new experiment of mine:  cold weather bike rides.  I refuse to give up riding; I just can’t stand to.  If it’s sunny, why not just layer up and go?  It’s different, alright.  It’s so much less immediate, because there’s so little skin exposed.  You pedal through a cloud of cotton and spandex.  You’re so much more in your own world because of the ear-warmers under the helmet.  It’s a little like being under water.

As I ride I see the same things over and over, but they look a little bit different every time.  I take the same few routes, or vary them just a tiny bit.  I don’t get bored.  The sameness is part of the joy.  The sameness with just a tinge of new.  I pass that same Parks and Rec meadow (well, it’s just a soccer field but if you approach it just a certain way, it is kind of a meadow.  You have to play these kinds of games with yourself when you ride in fairly urban areas.).  Everytime I pass that field, it looks a little different.  Two days ago the weed trees were the color of fire.  These are straggly palm-leafish kinds of beasts that spring up everywhere if you’re not careful — one even sprung out of the side of my foundation — but the thing is, in the autumn, even these are gorgeous.  A sunset of colors.

But it was a tough choice, because I love the annual pumpkin run.  You pull a splintery flat wagon through the rows and you get surprise after surprise of the weirdness of pumpkins.  Well, I made my cherce, as they say in Joisey, and so I missed it this year.  But my loved ones brought me back such bounty:  four very big, carve-able Jack-O-Lantern types; 3 pale-colored greens or pinks for decoration; and two sugar ones for baking pies. Ned was telling me about how one pumpkin they came upon was three feet long and U-shaped!  He also described a genie-bottle-shaped gourd that had fins somehow sticking out of it.  “Like an alien,” he said.

Randomness in nature is, to me, proof of God.  Because it is through the randomness that we get such intense new beauty, that lights us up inside.  The weed tree is now the Queen of the Meadow.  The absurd, monstrous reject veggies become the jewel in the crown of our porch steps.  The autistic, non-verbal, arm-waving sometimes scary young man is also sometimes the most breath-taking, heart-stopping, mind-boggling individual ever to cross my path, and so my path is very wide because of him.  We all have our beauty and our purpose, but you have to figure out your own season.

October makes five years that I’ve been writing this blog.  I’ve been lazy about it lately, but many posts have simmered nonetheless.  I’ve been very caught up in trying to move forward on Nat’s future — housing, supports, day program, job.  It occurs to me that though you do have to plan the future in many cases in life, with Nat I feel that I have to move, to make, his future.  I can’t let the future unfold.

Yet, this is not a situation unique to my oldest child.  I also had to look for the path and propel my middle child, my Max, forward to his future.  We assumed, knew, imagined that he would apply to college, but, to paraphrase Mammy:  “Imaginin’ ain’t gettin.'”  Ned and I had to attend parent meetings, where the panic and energy in the room made it hard to sit still.  We took Max on trips to visit colleges, slogging across dewy quads, studying the faces of students to find — what?  Something familiar, something that felt “right.” Max was on the look out for kids with ironic tee-shirts and balaclava hats.  Posters advertising geeky get-togethers.  If there were too many clean-cut guys carrying tall blue plastic cups, too many girls in Uggs and ponytails, it was not the place for him.

It wasn’t much, but it was a start.  We didn’t know that we already knew so much:  Max eschews categorization; Max is an A student; Max thrives in the world of creativity + engineering; Max has a good head on his shoulders; Max did not want to stay in Boston.  So  Max ended up getting into the Tisch School — NYU’s art school — and so Greenwich Village will be his campus.  That seems pretty right to me.  But we still won’t know anything until he starts (this is his gap year).  He’s already making noises about how he wants to do computer stuff, not so much film…

Whatever.  None of this makes me worried.  No, I won’t be kept up at night worrying about NYU until Max is there, and then, well — ick.  But I have time.

Not so with Nat.  The sense of not much time has been pressing down on me for a long time.  Ever since we got to that IEP meeting five or seven years ago where they started making noises that we should cut some of the academic goals in favor of the pragmatic.  That was the moment when I realized that Nat’s childhood was over.  He was not going to be going to school forever.  Just like when he was three, Time swoops down and pries him out of my arms and throws him somewhere and I just have to run alongside him and make sure he’s not hurt and can still stand up and walk forward.

With Nat’s imminent adulthood, I have responded in the only way I know how:  taking wild, sweeping swings at the dense clusters of information on Post 22, gathering knowledge greedily in both arms, sucking it down, all of it, whether accurate or not.  Recently, for example, I’ve been on a rocket ship trajectory towards setting up a group home for him.  I’ve been meeting with so many other people, and canceling meetings with so many people, just trying to figure out how to put it all together.  Do I sell my house to make this happen?  Do I put my energy into getting a philanthropical organization to create a home?  Do I become a 501C3, R2D2, or whatever?  The more info I consumed, the more constipated I felt.  I felt like I was in Dante’s version of Dys, the lowest part of Hell, where the more you struggle, the more you are trapped in ice.  What I keep finding is, there is no Step 1 and then Step 2.  It all feels like you have to do 1,2,3, and 4 all at once.

Talked to a Dad yesterday, though; this guy knows everything about housing, vocational, day programming.  I’ve known him for a couple of years now and I used to feel nervous whenever I was pulled into his orbit because he knew so much and seemed almost to enjoy arranging the pieces and rearranging them to see what the puzzle could look like.  He crackles with competence. He smiles a lot. Yesterday, after a long session with him on the phone, I finally knew what I have to do next:  Figure out Nat’s days, rather than his nights.  “What does it matter if he’s living in a home you’ve created, if he’s got nothing to do all day?”  This was the question that snapped me out of my funk.

Perhaps I don’t have to work so very hard at trying to build Nat’s group home now, when I don’t even have a reliable cohort of families to work with.  I can put my energy into finding for Nat an enriching day program, one where he works as much as possible, where he can exercise, where he can be creative, cook for himself, and perhaps even go back to some of the academics he had to give up years ago.  Even if he remains in my house for a year or two — so what?  He will be gainfully occupied for most of the day.  And it won’t be forever.  Once he is established in the Day Program routine, then we can take the steps towards living somewhere else, with others, with supports.  And during that time, we will get to know more families with similar outlooks and start to cultivate each other, to form relationships that will lead towards a housing solution.

I don’t know, at least that’s where I am this weekend.

I told fortunes today at Pumpkinfest, my youngest son’s school’s fundraiser.  I learned a lot about people watching their faces and responses as I interpreted the cards they chose!  I did study Tarot about 15 years ago, but today I was doing a “shorthand” form — all positive and empowering readings.  I removed The Tower and Death, the two cards that would trouble most people.

I was flipping through this book on dog behavior, Inside of a Dog, which is about dogs’ thoughts, reasoning abilities — it caught my eye as a good thing to get for Max’s animal-crazy girlfriend Hannah — and right away I was struck by the admiring tone of the author, Alexandra Horowitz, who is a cognitive psychologist.  Dr. Horowitz had such a lovely, deft way of describing the minute details of what her dog Pump does to learn and communicate.

I found myself feeling envious of dogs, for the level of affection, tolerance, and understanding so many of us give them.  I was thinking that we can be especially generous with our assessments of dogs’ intelligence, because we allow from the start that they are different from us.  We know that dogs are not humans, but that there are so many traits that they share with us, including the ability to learn, reason, and predict.  We automatically cut them slack for their inabilities, because our perspective is that we take them for who they are. I wish that our magnanimity extended as such to humans.

I am thinking in particular about how we judge Theory of Mind in autistics.  Dr. Horowitz makes the typical claim that many people with autism have difficulty with or even lack Theory of Mind, which is the ability to understand that there are minds, perceptions, and mental existences apart from your own.  The theory of Theory of Mind is that with autism you only know yourself and you’re not aware of others.

It is time that we, as representatives of enlightened humanity, move past this archaic notion of autism. Those of us who live with, work with, and or love a person on the Spectrum know that there are many ways to skin a dog, er, cat.  Most of the time, the difficult issues that crop up with autism, are about communication and frustration.  It follows that if you are a person that has overstimulated neural connections, underutilized neural connections, and other complex difficulty with language and interaction, you will have difficulty showing others what you do know.  If Michael Phelps, a swimmer capable of breaking Olympic records, has his legs frozen, immobilized, and you throw him in a pool, he will flip and flop and sink.  Someone who doesn’t know would think, “Jeez, that guy cannot swim.”  But he can.  He just hasn’t learned how to overcome his impaired legs.

How do we know that people on the Spectrum have little or no Theory of Mind?  Maybe they do, but they don’t know how to show it, or they don’t know to show it.  Nat knows how to smile, but he doesn’t do it sometimes when he “should.”  Is it that he doesn’t feel warm towards others?  Or is it that he doesn’t know that this is the way to show how warm he is feeling towards you?  What may look here like semantics, is actually a lightyear of a distinction.

Even if we ask some with Asperger’s who can describe their own experiences, is that going to explain Nat’s?  If Temple Grandin says that she learned about human interaction by observing social cues and teaching herself, “That facial position means you are happy,” for example, that doesn’t mean she does not feel the happiness.  It means that she now understands the more universal way of expressing that.  Dr. Grandin may even go as far as saying that she does not feel what the rest of the neurotypicals feel in terms of love, but how does she know that?  Maybe the emotion that feels like love to her is actually more intense than the way I feel love, but we have no way of comparing.  Another example of this would be the way I see blue compared to the way you see blue.  We can all agree (colorblindness notwithstanding) on what is blue, but none of us know what blue actually looks like to another person.

It stands to reason that Nat does wonder about other minds but does not show it, or does not know what to do with that input.  I defy anyone to prove to me that people with autism have no Theory of Mind.  Even or especially with the non-verbal, so-called Low Functioning (that’s another term we have to reconsider) isn’t the burden on us to try to plumb what he does know, rather than to assume what he does not?  There is some disconnect within Nat’s processing, but I would never go as far as saying that he does not have awareness of others’ different perspectives, of others’ minds.

The responsibility rests with us, the neurotypicals who are in the majority in this society and who make the rules and draw up the I.Q. tests and create the hypotheses, to be ever more accurate, to move our own language forward so that it matches potential reality.  We don’t want to be guilty of what I am now calling “neurism,” bias towards neurotypical responses.  If we don’t consider autism from fresh perspectives, we will continue to be dogged by the problems of stereotyping and ignorance, and hopelessness.

1. My childhood

2. That Nat can now master his frustration

3. When Ned gives me that look

4. Freshly hatched chicks (meaning the boys as babies, waking up in their fuzzy pastel pajamas)

5. The Four Senators’ sense of humor

6. Bicycling past a sunny meadow

7. All five of us under one roof

8. Finishing the last chore of the day

9. Alone time in the morning with my first coffee

10. Being “on” in my classroom

One of the world’s most effective disability advocates is my friend Tim Shriver. Take a look at his recent blog post, all about Rosa’s Law, to be signed (hopefully) by the President, to help us all think about how language matters; words matter.  Some of us may feel that this is an example of PC gone mad, but I think that is missing the big picture.  We have all seen the hurtful and rampant usage of the word “Retard” and it is time to shelve it with all the other slurs we no longer dare use.  No excuses.  Just end the word already.  And make sure you pass this message onto those who use it without even thinking.  If they don’t mean anything by it — why even say it?

I would guess that one of the most common wishes of the autism parent would be to know what one’s child is thinking.  That’s been mine.  Even knowing that neurotypical children don’t always readily tell you what they’re thinking, it doesn’t change the fact that we want to know.  And because neurotypical children presumably show themselves more like we adults do, maybe they are easier to figure out, for the most part.

Nat does not show himself, in general, in ways that are easily recognizable.  I know if he’s happy, because his self-talking becomes giddy and giggly.  But I don’t often know why he’s happy.  More and more, however, if I listen carefully to the self-talk, I can hear a word that might tell me.

Nat’s self-talk these days are often about us and what we are — or are not — doing.  If Ben is still at the computer by 11a.m., rather than at the breakfast table, we will most certainly hear, “Ben breakfast,” embedded in the pattern of the self-talk that swirls around us.  Ben is clearly in violation of the morning routine, and Nat is not happy about it.  I don’t think he even likes when we leave the house.  To have one of us gone is to tear the household fiber.  Not knowing when we’re coming back makes him anxious.  Today when I got back from the gym, I heard Nat stomping extra quickly upstairs, and I heard animated self-talking.  “Nat!”  I said.  “Are you happy that I’m home?”

“Yes,” he said.  And then, “whooo-feeeem hoooome.”  Something like that, ending in home, all stretched out.  Gotcha, Nat.  But, of course, he did not tell me the word “home;” he told himself and let me figure it out.  That’s progress, but I want more.

Nat got pretty upset this afternoon when he came back from a walk into town with Ned, and Ned stashed what he’d bought — a book for my birthday — in the trunk of his car before they came into the house.  The trunk of Ned’s car is one of his hiding places for my presents.  Not that I look; I just know, because all of the house hiding places are ones I use, for everyone else’s presents.

Nat came in saying, “Daddy will bring the book in.”  Ned kept telling him that the book was to stay in the car.  “Some things stay in the car,” he said, making it a rule.  But Nat continued to work himself up about it, though never biting himself or yelling.  The worst he did was jump high and hard, crashing down onto the floor, and making Ben hid under the table.

Eventually Ned had to say that we were not talking about it anymore, to be firm with Nat and thereby help herd him back in between the safety of hard rules.  It kind of helped.  I directed Nat to sit down, and he complied immediately.  He knew he was acting inappropriately.  He knew he was a bit out of control.  But he was so upset about this rupture in the way things are done that he just could not stay calm about it.  I understood, I could almost feel how panicked he was; but I knew we could not alter anything, and that was for his own sake.  This world disappoints us, people let us down and do stupid, inexplicable things, and the sooner Nat understands that, the better.  It is another tough job for parents, to let their children struggle about something and come through it stronger.

Easy to say, but I was worried as we packed Nat up and got into the car to bring him back to the House in time for dinner there.  I had a shadow of that heart-in-throat feeling, of the question, “Is he going to attack one of us in the car, over the book?”  But for the most part, I felt okay.  Sad but okay.  I don’t like when we revisit the terrifying behaviors of the past, even when we don’t get there.

We drove around the Franklin Park Zoo rotary and into Boston.  Nat was sucking his thumb so hard the chirping sounded like the aviary at the zoo.  “Nat, what are you thinking about?” asked Ned, steering onto the bridge past the clock tower.

“Book,” Nat answered, without hesitation.  He continued sucking his thumb, but said nothing else about it.  “Thanks for telling me, and for staying so calm,” I said, but truly there wasn’t a praise phrase in the world that could capture my pride in his growth and self-control.

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.

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.

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.

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…

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?”

“Noooo.”

“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.

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.