Susan's Blog

Friday, December 31, 2010

The Quiet, Abiding Love of Two Brothers

I’ve always lived in New England, so these long winter vacations at home are very familiar to me.  Memories of the whiteness and the pervasive cold are as much a part of my days as an extra sweater and socks.  And being a mother during winter vacation is perhaps the most familiar feeling of all — although now that I’m seeing that we all really do get older and things change, I am aware that even winter motherhood won’t always be like this.

My first child moved out and it was like he was ripped from my womb.  As melodramatic as that sounds, it felt that horrible to me.  I think this feeling was because I also needed him to leave, I wanted him to leave, and that fact hurt as much as having him gone.  Friends tell me that even when the child who moves out is “typical,” the feelings are mixed like that — you both want him to go and you are sad to see him go.  Each of us feels a different degree of readiness for that passage to happen.  I was ready for Nat to go, but that fact deepened my pain, because all my life I had vowed that I would not do that.  I would not Go Residential (interesting that I thought of it that way, the same construction as Go Insane); I would hang on to Nat and keep him with us.  So when I needed him to move out, it felt like a failure, a broken promise.

It is neither of those.  It was painful, but that didn’t mean it was wrong.  Nat’s move-out was the best thing that ever happened to him, other than going to Extreme Sports Camp for Autism, learning to ride a bike, going with me to Disney, and joining Special Olympics.  These leaps of his were such risks at the time, depending on his age and developmental stage, but they ended up being moments that propelled him into an utterly new way of being.

Faced now with my second child leaving, I find some of these dynamics recurring, shaped specifically around Max, but familiar and scary all the same.  Last night Max called us to say he was spending the night at his girlfriend’s house.  Max is a few months shy of 19, a young man who has traveled on his own, who works nearly fulltime, whose cap is feathered with many adult achievements.  It is not the first overnight he has had with Hannah.  But last night, Nat was very aware that Max wasn’t home.  He has become increasingly aware of Max’s whereabouts, of his new activities, like not being here for dinner, like driving and like staying out way beyond our bedtime.  Max’s presence is unpredictable, and Nat is adjusting to that.  Like the changing of vans, seasons, bedsheets, and breakfast routines, Nat notices the changes around Max with great interest and discomfort.

When Max called, Nat bolted downstairs; he seemed to have been waiting for this.  “Max will come home,” he said almost immediately.  He was straining to hear what Max was saying on the phone to Ned.

“Okay, you’re staying at Hannah’s tonight,” Ned was saying into the phone.  I looked at Nat in dread.
“Max will sleep home,” Nat said.

“No, Sweetie,” I said.  “He’s staying at Hannah’s.  He’ll be home tomorrow before lunch.  You want to talk to him?”  I figured maybe it would feel good to him to hear Max’s voice.  Max is always willing to talk to Nat; sometimes he talks to him when we are out, when Nat calls from his group home.  Max always has a smile in his voice when he greets Nat:  “Hey Nat, what’s up.”  Nat often answers him.  I think Max is tickled by how much Nat pays attention to him.  Max accepts this warm attention as naturally as he accepts all of the admiration that comes his way.  He’s a golden soul; he’s always been loved by the world, and he has always given love as easily.

I don’t think Nat can remember a time when Max was not there, because Max is only 2 years younger.  When you show Nat baby pictures of himself or Max, he says it’s Ben.  Ben is the only baby Nat has known.  Max was never a baby, in Nat’s experience.  Max was his Constant.

Max waited on the other end of the line to talk to Nat, but Nat did not want to.  We said goodbye to Max and I could see Nat tense up.  Here was one of the most familiar sights and feelings of my life:  all of Nat’s tremendous energy compressing into frustration and panic.  I get a flash of panic that I won’t be able to handle him, that all will spiral out of control.  I looked at his hands and I remembered his sudden pinches and scratches, the way he’d become like a human thresher, slashing at us rhythmically, unstoppably.

But no, that is not what happened.  I knew it wasn’t going to happen.  That stuff is in the past.  Nat is not a machine, he is a complicated adult whose understanding of the world is becoming both clearer and more layered.  “Sit here, Nat,” I said, reaching for his hands, trusting that they were just hands, even though they were curled tightly in tension at the moment.  He sat and said again, “Max will sleep here.”

Ned explained gently that Nat was not sleeping here tonight.  We both repeated the litany, that Max would be there, but would come home late morning.

Nat listened, his body bent over heavily.  At last he said, “Max will put on pajamas.”  This meant he was beginning to imagine Max sleeping somewhere else, and he was trying to work out all the logistics.  Where would his pajamas come from?  Did he have a toothbrush?  Unlike Nat, I do not want to know the answers to those questions, but I told Nat with great certainty that Max had pajamas there and that he would still be able to brush his teeth.  All would go on, differently but normally.

Ned brought out the chocolate, our family’s medicine, and Nat accepted some, but not with the usual enthusiasm.  He was definitely bothered by Max’s absence, saddened by it, but also trying to move on.  I only hope I can be as gracious when Max leaves in the fall.

Thursday, December 30, 2010

Understanding Works Both Ways

The Doctors’ Lounge site ran a relevant and sensible finding by scientists at Johns Hopkins U.  Apparently adding in a component of focused social engagement into ASD toddlers’ interventions increased their social abilities, wherein they were better able to give “joint attention,” eye contact, and “shared positive affect” with others (HealthDay News).  This is the kind of science we need to see.  I think we need to devote equal attention to positive therapies that build skills for those with ASD, as much as finding out the causes of autism.  I used to take the hard line that we didn’t need to know the causes so much, but truly, we do.  Autism is a difficult disorder to contend with, no argument there, so most likely we would want to know its causes and have less of it, or at least have it be less severe if possible.

I’d also like to see studies that worked with older folks with ASD.  Toddlers seem to me to be low-hanging fruit.  Plasticity of brain and all that.  But I believe that all of our brains are plastic enough, practically saran wrap at this point, plus there’s all that white and gray matter not even being used.  So let’s figure out a way to tap into that, damn it!

We need to encourage similar studies in adults with autism.  We need to stop acting like they don’t exist.  We need to stop acting like they’re a lost cause.  We need to look at them, and see them as the people they are, with all that they have to offer.  Untapped potential!!  Open the floodgates!  Imagine what we might find.  The Hopkins study is important in that it helps create better understanding of ASD among the neurotypical populations.  Understanding works both ways.

Defcon Deconstructed

I love it when I’m right.  This has been quite a week. A typical Christmas break week.  I watched War Games the other night, a movie I’d never seen, but one that we all could agree on.  I learned what Defcon 1-5 is really like from that flick.  It wasn’t bad.  The movie, I mean; Defcon 1 was bad.  “Not bad” is actually pretty good for us.  We have so many variables it is a strange common denominator indeed that links us together.   A lot of what we do as a family of five with one 18 year old fully deployed male, one 21 year old male, fully activated and but still in need of some programming, and one 12 year old newest version still in Beta.  (huh?)

Our Christmas break goes something like this:  Nat comes home, and I’m so so so happy to see him.  I kiss his rough oily face and marvel at his size and presence.  He stomps and stomps around, and it’s all very endearing, even to the point of calling it “Joyful House Stompies.”  But this is actually Defcon 5, the most peaceful stage of homelife.

Then I notice a day or so later that the House Stompies are not so Joyful.  They’re  just loud.  And repetitive.  Nat is everywhere:  running up the back stairs, to the third floor, down, then down the front staircase and into the kitchen.  Takes a look at what I’m doing — or not doing, as the case may be, because I’m always disorganized in Nat’s eyes, when it comes to making meals — then circles back upstairs, sits on a bed, runs back down. We just purchased a new bedspread from homefaith. Maybe a quick sojourn into the livingroom, to see what they know there (nothing; everyone but Nat is glued to a laptop or reading; why read when you could be running all over the house loudly, from room to room?  Normal is defined purely by the majority.).

So I start to come up with projects.  I’ll bake gingerbread with him and Ned will take a walk with him.  I’ll take him food shopping and then make him carry my laundry up and down on those practiced legs of his.  Ned will see what he thinks of the iPad.  I’ll see if any of his teachers want to come by and do something special with him.

Still, over vacation we have our own inner lives, our own desires — Nat included — and these orderly plans don’t always pan out.  For example, the other day, I got all psyched to have a quiet house for an hour while Ned took Nat out to Peet’s to pick up a pound of our favorite decaf (French roast).  Problem is, Ned needed to help a friend out with something right after he had given the signal to Nat to get ready to go.  So we were already on Defcon 3, which is the level at which Nat already has on his shoes (Defcon 2 is coats on, Ned’s shoes not yet tied.  Defcon 1 is some other unforeseen delay).  But sometimes Defcon 3 can blow straight through 2 and suddenly, Houston, we have a problem.

Ha ha, that’s so funny now, in retrospect.  But when it was happening, Ned was on the third floor in his office (where it was quiet) trying to help our friend on the phone, Max was on the second floor with two friends over discussing video games, Ben was trying to keep his cool while chatting with numerous friends on Buzz, and I was — what the heck was I doing?

Whatever it was, I could see Nat was escalating.  I heard, “Take walk, take walk,” in increasingly higher pitch, the stomping even harder (loose old house ceiling fixtures clinking).  My pulse racing, Think think think Susan.  Scared, scared…memories dark the corners of my mind…pissy, ordure-colored memories, of the way we were

Can it be that it was oh so simple then?  Let me tell you, it was not.  I used to be so lost in Nat’s upset.  My mind would go: “Ahh! Benji!  Scared! Stop it! Loud! Think! Don’t reward bad behavior!  Must stop bad behavior quickly! Reward it — who’s going to know? Act! What did the school say to do?  Fuck the school!  Our house is blowing up!  Siege, warning, warning…NAT!  STOP THAT YELLING AND STOMPING,” I say, yelling and stomping.

But that was then.  You see, neurons can be retrained.  Mine and Nat’s.  All I could think this time was, “Come on, Ned.  Nat is getting upset, thinking he may not be going on a walk.”  I could see Nat was so upset, and I felt bad for him.  I yelled at Ned a little, and then I thought, “You know what to do.”

“Come on Nat, come sit with me.”  He followed me upstairs.  “Sit here,” I said, sitting on my bed.  Not a time-out.  Just the two of us sitting in a peaceful place.  The sun through the lace curtain was soft, etching filigreed gray shadows on the white bedspread.  Quiet air lay heavily, reassuringly on our shoulders and against our ears.  Nat began sucking his thumb, a good sign.  The loud chirps rocketed me back in time, to 1990, to another room, the same bed, my beautiful golden baby next to me, refusing to nap.  Oh Nat, I thought.  We are still the same.  We are still you and me.  “Let’s just wait a little bit.  Daddy is almost done talking on the phone.  He will come.  You will go on your walk.  I promise.”

Nat exhaled deeply.  He heard me.  And so we just sat together.

Sunday, December 26, 2010

The Polar Extremes of Brothers

My pride in my 18 year old son, standing by the sink peeling potatoes, is as brilliant and sharp as my sadness for my 21 year old son, banished from Ned’s stepmother’s kitchen.  In the past years both have learned their way around a kitchen:  Max from his girlfriend who studies and thinks deeply about the existences of all living things, and Nat from his group home where everyone is expected to pitch in with meals.  Max is embraced and pulled into the gravity of family excitement and anticipation, his large, capable hands grabbed and filled with gifts and tasks.   Nat is a force unto himself, walking with knife-like strides through the family clusters, making his route, a long flat figure eight from living room to dining room to sitting room.  The eight should include the kitchen, but this is not allowed.

I am having a beautiful afternoon, bruised by this one thing.  Why is the kitchen welcoming to Max and not to Nat?

I don’t know why I so often see things as what one has and what the other one does not.  I come from a family of four; we were two girls only 19 months apart.  Many families do the “X-sister and the Y-sister” thing, convincing themselves that whatever one sibling is, the other one can’t be.

I don’t want to see things this way because such thinking diminishes both children, actually.  Outwardly Max gets to be the ultra-accomplished child, so easy to be around and to love, in contrast to his puzzling older brother.  (And I am not even going into the dynamic of the third brother, 12-year-old Ben.  Not in this post.)  Seems like it’s great to be Max, but what if Max wants to fuck up?  Does Max get to be a pill?  Does he get to be a gloomy teenager, someone who makes you frown sometimes?  What does it feel like to be so easily loved by the world?  Is there a downside?  Probably not much, but emotions and situations are never simple, never unblemished.  I want Max to be able to be ugly if he needs to be.  No living person should be beatified.  We all need our uncertainties, our flaws, our disabilities and our inabilities.

I completely understand that we all figure out our ways to make it through life, to navigate our way around the many strange and varied souls we come across.  And that this is what was happening yesterday with Max and Nat and the kitchen; it is easier for some to go with the apparent flow of Nat as “out of it” and someone to manage and maintain, rather than to dive into his depths and see what there is to grab onto.  I float lightly around him myself at times.  But I can’t help it, it hurts, it really does, to see others making assumptions about Nat that are so ignorant.  I understand that they don’t reflect Nat’s reality at all.  Still, I don’t know what he might feel about being viewed this way.  Maybe he doesn’t notice.  But what if he does?

What is cutting into me is that maybe I could have helped with all of this but I did nothing about it.  I did not know what to do about it.  I wanted to enjoy myself, with Ned’s sister Sarai, and her baby Willie, and everyone else.  I did not want to upset anyone or ask awkward questions, like, “What are you afraid is going to happen if Nat wanders into your kitchen?”  I did not feel up to being a teacher, and saying, “hey, did you know Nat could help with the potatoes, too?”  Or maybe I could have merely shown everyone, taken the Teaching Moment to say, “Nat, please help Max by rinsing off those potatoes.”

Here’s the crazy-making thing:  I also wanted Max to have his star moments of being this great guy helping out.  Look how far Max has come; he used to be just like Baby Willie. Blond, beautiful, pink-cheeked, laughing, running, breaking stuff, spilling, proudly telling us the colors and the noises of each animal.  Filling up everyone’s hearts with Baby Goodness.

And so did Nat.

Sunday, December 19, 2010

There’s More Than One Answer To These Questions

Yesterday I wrote a horribly depressed blog post but if you blinked, you missed it.  I took it down.  I am terrified of showing the ugly despair I feel sometimes.  I think it is human nature to want to hide that from the world, like a cat in a litter box.  I do show more of my honest and grotesque thought processes than many people, and I do that because after a while I can’t keep it shut inside my own skull.  But I need a Medieval barber, someone who can apply a leech or bleed me and let out the toxic spirits.  That’s what this blog is for at times.

The poison comes from self-loathing, or perhaps self-knowledge — meaning that I’ve come to realize that something I do is not the best course of action and yet I do it anyway.  Unstoppable habits:  this is the stuff that nightmares are made of.  We know we shouldn’t — and yet we do it anyway.

I know I should engage Nat.  I know I should organize Nat.  I know I should have more expectations of him when he’s home.  No, no, don’t tell me that he needs his downtime, the dignity of orchestrating his own weekend day.  I know that.  I believe that.  And yet, as his mother, I am supposed to guide him towards self-improvement and growth.  It is my job, just as it is any parent’s job to teach their children the right way of doing things, to show them how to be self-preserving rather self-destructive:  to push them to grow.  The child’s softness and underdeveloped social and mental muscles have to be exercised regularly.  We are the ones who are supposed to oversee that.

But I’ve let things go for too long here.  All three of my sons spin off into their own worlds, deeply invested in their projects, their habits, that for me to step in now would be an enormous effort.  When do you decide that your child is fully formed and not in need of your intervention?

Somehow we can all pretty much say that Max is “done,” and can take care of himself, with minimal oversight.  He’s in a committed relationship, he has a good job, he can prepare meals, and he can be left alone overnight.  Ben, on the other hand, is not yet “done,” because he doesn’t take care of himself as well.  If left to his own devices, he’d stay in front of his art forum and his game design and he’d only eat ice cream when he came up for air. But I figure he will be done pretty soon, once he internalizes constructive habits, once I see him going for an apple on his own, once I see him close the screen and sit down with a book or a pad and pencil.  I already see signs of that, so I’m not afraid for him.  I see that he can arrange his own social life, he can get his schoolwork done, though it takes hours and hours.  I’ve seen him advocate for himself in so many little ways that are actually huge.

So how about Nat?  When will Nat be “done?”  The overall assumption is that he won’t ever be done.  His disability label takes that away from him.  His limitations seal the deal.  I am eternally on the hook for teaching him more and more and more, for overseeing his development.  Parents of people with disabilities understand and feel that hook and that is why there is so much more anxiety in their lives:  the knife of ultimate responsibility sits poised at our throats.

This is the danger of seeing our children as a long checklist.  Having the developmental tasks stretch out before me makes me feel tired and hopeless.  It reduces all that we do to effort and mental calculation.  How many constructive activities did I manage with Nat this weekend?  Okay, well, I brought him to a densely packed Christmas party, where there was even a dog, and he paced from room to room, avoiding the dog and looking for new things to eat.  Occasionally I would grab him and introduce him to someone, or give him a kiss, and try to make him respond to people when they addressed him.  It’s funny how the others would try to get me not to force Nat to do anything, to let him be.  They were anxious about Nat being unhappy.  They felt that he was “doing great.”  I felt that there was so much more he could be doing.  I’m supposed to think that way, to always have expectations of him.  But those around me were trying to get me to see that what he was doing was actually very good; he was there, he was happy.

So which is it?  Am I to put more demands on him, to try to bring him more “up to speed?”  Am I still working under the model that I have to push him Closer to Normal?  Or is the goal Closer to Fine?

Tuesday, December 14, 2010

This Little Light of Mine

I have a piece in today’s New York Times online, Lisa Belkin’s Motherlode blog!

Sunday, December 12, 2010

Belated Thanksgiving Pictures

Finally, Ned gave me the Thanksgiving pictures off his camera! Better late than never.

Friday, December 10, 2010


With Ned and with my boys I’m truly home, but it’s taken a very long time for me to understand why this particular group of beings is my home.  What makes “home,” that place where you can rest, and just be?

Nat just got home, and before long I could hear the hum of the tv, and so I went in and asked him what he had chosen.  “Cawry,” he said, referring to our very very old Weston Woods video of Corduroy.

Corduroy was the very first book Nat liked, the very first character that engaged him, way back at 18 months.  He would sit in Ned’s lap, in my lap, listen rapt, thumb in mouth, and when the story was over, he’d close the book, take it out of my hand and then put it back into my hand, saying, “um, um, um.”  I knew he was asking me to read it again.  Over and over we’d read it.

The story goes like this:  Corduroy is a bear in green corduroy overalls.  Unbeknown to him, one of his shoulder straps is missing a button.  A little girl, Lisa, wants to buy him but her tired mom needs to get home, and so she points out this imperfection, hoping to discourage Lisa.  Corduroy watches them go, sadly, and notices for the first time in his life that he has a flaw.  Mystified, but not given to too much reflection, Corduroy sets off into the department store once it is closed, in search of his button.

Of course, Corduroy is not going to find his button anywhere in the store, and we know that from the start.  Even if he were to find a button (and indeed he tries to pull one off of a mattress in the bedding department), how would he attach it to himself?  He has stuffed bear paws!  Yet look he must, because that is our nature:  to be complete.

I do wonder what it is that drew Little Baby Nat to this story, and what makes him still love it today, at 21.  Because there is quite a bit of projection, imagination, and intuition in my relationship with Nat, I found myself thinking about this today.  I allow myself this kind of exercise, not just with Nat, but with all my guys, because imagining their inner world helps me connect to them.  Maybe there’s some fiction to it, but who’s to say?

In the end, Lisa comes back to buy him, missing button and all.  The last picture shows her sitting with him on her lap and sewing on a new button.  “I like you the way you are,” Lisa says, “But you’ll be more comfortable with a button.”

I could say a lot about how perhaps Nat empathizes with Corduroy, who knows he is not like everyone else, and so must try extra hard to fix that, in order to get what he wants. I could say that Nat enjoys Corduroy’s journey of discovery, his lovable mishaps.  His finally being understood.  But I think that what Nat may love best about watching Corduroy is the feeling that he is home.

Sunday, December 5, 2010

Could have, wood have

Nat walks into the livingroom this morning, announcing himself in his own language, dressed in his signature yellow, shining like the sun.  I am flooded by de-light.  “Natty!”  I say.  “You’re so cute!”  Nat’s eyebrows go way up, as if he is concentrating really hard on the meaning of cute.

Ned and I agree that indeed, he is cute.  But then!  Oh shit!  A flash, a split second of something, sharp, ugly, and true, that has wedged itself like a splinter into my full, fleshy happiness and whispers:  –You’re treating him like a baby.

I can’t help it, I reply.  He’s cute.  He’s adorable.

-He’s 21, says the splinter.

I know.  But he is an unusual 21.  Besides, if I see him as truly 21, all 21, I feel a pang that I don’t want to feel.

-And that is?

Imagine what he might have been like by now.

-You have no idea.  This is who he is.

Well… I look at Max and Ben…

I don’t dare finish the thought.

-You are a terrible person, says the splinter. They are who they are, but who are you to say that Nat should have been someone else?  It’s vanity.  It’s chutspah.  It’s hubris.

I guess, well, since we’re talking about it — I look at Ned’s and my genes.  Or I think about what they contain.  The dark and light of Ben’s art.  The round warmth of Max’s.  Their lightning epiphanies, realizations about — everything.  The way they can do math (that’s Ned’s genes).  The way they laugh at my jokes — or the way they hate them.  The million different things they do and become and once were.

-And what does that have to do with Nat?  Isn’t he a million different things and going to become even more?

Yes!  But the boys are so close, genetically.

-I know what you’re going to ask.  Go ahead.  It’s okay to wonder. It’s okay to think it.

WHY did things end up so different?  Why?

-There is no ‘why.’  There is only what is. There is only who he is.  Exactly who he is.


I’m going out.  I’m going to ride.

-In this weather?

You’re just a splinter!  You can’t know what it’s like!

I know.  Because I was once a tree.  I could have been standing proud in a park, giving shade, dropping orange leaves in the fall.  But instead, I am just a metaphor for your conscience.

Now I feel my smile coming back.  The splinter floats free, as splinters do.  I bundle up and I ride.  The air is so cold, but I am dressed just right.  My trunk, legs, and arms are warm.  I only feel a few slashes of the wind here and there, and it is only cold like peppermint.  Every now and then there is an ache, a burning and a strain, a pop of knee, a lumbar pressure.  There is always, always, a little tiny bit of pain, but it’s nothing compared to the pleasure of just being here, exactly this way.  Once again, I understand.