Susan Senator

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.