Susan's Blog

Wednesday, August 31, 2011

Max on his own

Max has gone off to college.  I am missing Max in a soft way, a quiet but constant awareness that he’s not here.  For the past year — his gap year — he was here so much, even though he was also away so much, using his newly-earned driver’s license, hanging out at with his girlfriend (also not yet in college) and friends who went to college nearby.  He was simply part of the family, though in a nineteen-year-old’s undependable way.  I never knew when there would be only the three of us for dinner (Ned, Ben, and me) or six for dinner (Max, his girlfriend Hannah, and his friends Yaz and sometimes Sam).  Sometimes — when Nat was also home —  I had to tell Max that any more than one friend, they were on their own.  An impromptu dinner for seven, when two of those people are vegetarians?  I don’t think so.

My feeling of missing Max is compatible with my feeling of Max, his entire life.  He came along when I didn’t know Nat was autistic, but I did know that things were not going well with my firstborn.  Those days I thought that the problem was me.  It made sense to me that I would not have been a very good mother; I hadn’t done a whole lot yet in my life except marry and get a master’s degree.  The only books I’d written were unpublished novels that I knew were not very good.  I hadn’t held any real jobs and it seemed unlikely that I would in the next decade.   I had not separated psychologically all that much from my parents and so I lived in a kind of emotional dependence on them merged with a teenage rebellion/angst even in my late twenties.  Predictably, this mess ran over into my relationship with my sister, with whom I would have bloody, visceral fights from time to time.

I was so uncomfortable in my own body that it was pretty much impossible to be comfortable anywhere.  Two months after Nat was born, we moved into a crappy but fairly charming little house in a shitty part of a suburb of Cambridge.  I spent the next year of his life figuring out that we had made a mistake leaving my beloved Brookline, and trying to convince Ned of this.  I also spent that year figuring out that something was wrong with my beloved Nat and trying to convince Ned of this.

Both were exceedingly difficult to come to terms with.  Who wants to move out of their first house only a few weeks after moving in?  Who in the world examines their new baby over and over again, obsessing about every nuance, interaction, or lack thereof?  But I, a nascent obsessive compulsive, spent my first years of motherhood in a miserable state of knowing something but not knowing it. Knowing something but not having the credibility because I lacked confidence and experience, because my husband and parents didn’t know how to deal with this progressively painful situation.  I was Cassandra, I was the prophet of doom, but I had no street cred with my loved ones.  So the pain just bubbled and boiled.  Susan was unhappy, Nat was an eccentric baby, why couldn’t she get fixed and enjoy her life?

She could not.  But when Max came along, something changed.  There was a lightening, a softening for the first time.  This easygoing baby responded to me with wise eyes that believed in me.  He depended on me, and I mothered him, and that was the deal.  Simple, straightforward.   This relationship gave me my first experience of confidence as an adult, though I didn’t know it at the time.

We say that we shouldn’t compare our children, but I think we should.  This is the way that we learn about childhood development.  But we should not compare our children so as to judge the value of one against the other.  In my heart, Nat occupied so much space, and yet, there was just as much room for Max; this seemed wondrous to me.  There was no comparison, only learning.   So much hurt about Nat but did not hurt about Max and I needed to know why.  One boy informed me about the other. I could see the miracle of normal development in Max and I rejoiced in the beauty of even the most mundane things with Max, such as problems with sharing, getting muddy from the rain, getting him eating vegetables.  And then, o joy, there were the most amazing things, such as Max himself:  his mind, his quick intelligence, his fun.  The way he spoke like Woodstock, in all exclamation points.

They say that happiness is the absence of pain, like when you are sick and finally you are better, how beautiful that feels. One aspect of my happiness in Max will always be about the relief of normal development, the absence of fear.  But the other aspect of my joy in Max is purely about Max, my calm and confident baby who grew into this calm, confident, beautiful young man.  His leaving for college feels right and timely.  His absence here is omnipresent.  Everywhere I look I think about Max, how he would come right into the livingroom with us as soon as his friends went home.  How he would open his laptop like a treasure chest and pull out cool things to share with us. How every once in a while he would start talking to me, this quiet smiling son, releasing torrents of thought and information so that I’d have to grab hold, like to a branch in a rushing river, but at the same time  hope that it wouldn’t stop coming at me.

I don’t want to cry, I want to sigh.  I want to breathe and think and look around and picture him, constantly, in his new life on his own without the friends, girlfriend, effluvia of his family.  What is that boy like in the world out there?  I feel a bit of maternal worry but mostly just a missing him — with pride.

Thursday, August 25, 2011

It’s not about your autism approach; it’s about your humanity

For Therese

It’s a funny thing about autism dogma.  Those under the sway of one kind or another are almost evangelical in their beliefs.  They see all autism success (or failure) in terms of how closely one has followed the True Path.  I think that I detest dogmatic thinking more than most dogmas themselves.  I detest dogmatists and yet sometimes secretly am jealous over their certainty.  I rarely feel certainty about anything.  I experience reality and relationships as ephemeral, not static.  I search for solidity but rarely find it.  I’d be a terrible politician, because I flip-flop constantly, both in mood and belief.  As a Libra, (and dedicated flake) I see many sides to a situation or person at once.  And seeing them, I must acknowledge them.

I remember when I was much younger and I pursued the belief that vaccines cause autism.  I went back in time and I remembered the day I had sat Nat on the examining table in Dr. Kerbel’s office while he got his MMR shot.  Nat had looked up at us, his eyes blinking back surprised tears, and he had smiled.  I remember thinking in the years after that, “Was that the moment It happened?”  And saying to Ned, “If indeed the MMR caused Nat’s autism, I want to kill myself.”  For me, the response was never to blame pharmaceuticals, doctors, anyone else but myself.  I was his mother and I let him get that shot.  At times I have felt jealous about the anti-vax certainty and anger, because I never felt any of that.  It would have been a relief to have felt that, I think.  Then I wouldn’t have had to feel that terrible laceration of responsibility.

But time passed and I could not ignore the research, the articles, the discussion with doctors I respect.  And I could never get past my own inability to believe in one answer and stick with it.  I have never even been able to make The Vaccine Controversy be my main autism theme, my Issue, because I can’t even sustain enough passion or interest in it.  And also, there were too many other factors I could not deny, namely, that Nat had always seemed different somehow, even as a newborn.  Wistful, my grandma called him.  Vistful.

Inevitably, my slippery mind flops from the question of etiology and blame, to something else, or just back to Nat, and Nat alone.

So it’s Nat — and my own lack of convictions and theories and favored approaches — that drives me.  Nat drives me, and also, the people in his life who have made a difference.  It is ironic that Nat has attended an ABA school for nearly eleven years, given how my perceptions fluctuate.  What is more ironic is the reason we have stuck with the school:  the diversely talented individuals they hire there.  While Nat’s school prides itself on strict ABA to the point where they believe that their intensive teacher training renders each teacher the same, what I love about the school is that each teacher is gloriously different.  The ABA-ists want to see their success as being about metallic gray consistency, where “a staff” is interchangeable with another, and that progress is about carefully measured antecedents and consequences to a given behavior.  But what I’ve seen over the years is that consistency is overrated.  I know that, because I’m often inconsistent.  And where years ago an ABA teacher commented that Nat would only do as well as the efforts I made to be consistently ABA-ic, I find as an older mother that it is Nat’s flexibility and my spontaneity that have wrought some of the best aspects of our life together.  Yes, of course it would be great if I could more frequently create a schedule and stick to it, follow the same system of rewards the school uses.  Nat might be less anxious if I did that.

But because Nat has known fluctuation in his mother, he has become a person who is sensitive to moods in others.  He knows every inflection of my voice, every shadow that passes over my eyes.

The best teachers Nat has ever had know this about him.  They know when to gently push aside the curtain of their training and simply pat him on the shoulder.  They lift him out of the constricting lines of the data graph and hold him in their hands, just Nat.  He does this because that teacher spoke harshly to him.  He did that because that person disregarded him.  He reacted this way because he did use his words but you still did not honor them.  The best teachers do not adhere to one solid principle of pedagogy; they get to know the student and respond accordingly.

Nat has had more than his share of wonderful teachers, at his current school and previously.  Pretty much all of them have been terrific, except for that handful at the Unnamed Collaborative, when he was 10, the place that traumatized me more than it did him, and turned me into Mrs. Jumbo, Dumbo’s Mad Elephant Mom.

Anyway, this is a long-winded way of saying that probably One of The Best teachers Nat has ever had,  humane, creative, loving, with whom I trusted him on his last trip to Colorado:  Therese.  Is leaving the school.  She is moving on to the public schools.  We will miss her so much.  I could not begin to thank her for the love and spontaneity and creativity she showed Nat.  My feelings of love and gratitude to Therese are one of the unwavering truths in an otherwise changeable life.

Wednesday, August 24, 2011

Black thoughts on a bright sunny day

My so-called strength is deserting me.  I hate this, I hate this.  There is no escaping my terrible sadness and fear for Nat’s future.  Yes, yes, he is luckier than some because he does get some funding.  We don’t know how much or where he’ll live or with whom or whom the staff will be but we do know he’s eligible for residential care.  But still, for residential care, there is always a catch.

Nat is between two worlds; he always has been.  Neither “high-functioning” or “low,”  it is hard to find a match for him, just as it was hard to find a school program.  There is always a fork in the road, between the upper levels who are mostly verbal and can make conversation and be left alone maybe a little or a lot, and the so-called lower levels who appear disengaged and have a lot of trouble with communication and safety. In school we had to make the choice between academic programs and pragmatics.  We had to risk regression with peers who were more challenging or we had to risk his anxiety and aggression with a more demanding curriculum and fewer support staff.

Nothing for just plain Nat.  How often I have wanted to just pull him out of the world and teach him myself.  But what kind of life would that be for either of us?  I need to be out in the world and he does, too.  He loves being around people, as long as he doesn’t have to talk to them, probably more than I do.  I can’t deny him that.

The group home project is a bit frail at the moment.  We are not at all sure we have anyone for Nat in November, when he needs it.  There is talk of bringing Nat home for a few months, with support.  But that makes me scared.  Will he become anxious with the changes and regress and aggress?  Will Ben pay the price?  Will we even be able to find adequate staff once he does have a cohort?

Why does the state set such low pay rates for caregivers?  How the fuck does that make any sense?  And if they do that, why can’t I legally supplement their salaries and pay them more?  It is a system that perpetuates low-level life styles, mostly maintenance, because the staff are disengaged.  They need to be paid better, like anyone else.  What is motivating them?  Coming to work to restrain people and clean them up?  No wonder there is so much “van therapy;” it is probably a relief to pile them into the van and get them seat-belted and deposit them at DayHab or a mall.  God damn it.

Oh, I’m sorry to anger or depress you, my dear readers.  These are my fears.  They are your fears, too.  They are the worst I can think of.  Oh no, wait, there is worse.  I could live in a country like Darfur or something.  God forbid.  This fucking world.

I know of a young man who would be a perfect match for Nat but he doesn’t have funding.  The only funding available for staff for Nat and this guy is very very low.  So to put them together means risking a disengaged caregiver.

Who can help us?  All I see is uncertainty stretching ahead for my dear son.  Sons.  Me.  Us.  Sure, yes, life is always uncertain, red in tooth and claw.  But fucking hell I have tried so hard to make things work for him and now there is so much I have to leave to chance.

plus Max is leaving on Sunday.

Thursday, August 18, 2011

Getting There

Just finished Left Neglected by Lisa Genova.  Genova seems to be well-versed in brain disorders; I think she studied neuroscience at Harvard.  Left Neglected is about a disability called “Left Neglect” that can result from a right brain trauma, in which the patient misses seeing items on the left.  It is hard for me to imagine that, but Genova draws a believable portait of Sarah, the main character, who is badly injured in a car accident (using the cell phone while driving in the rain, let that be a warning!).  Sarah is (was) a high-powered Alpha woman prior to the accident and spends much of the book battling both her Left Neglect and also the idea of having a disability itself.  That is why I liked the book (well, it is also a fun read).

The concept of separating ones self from ones disability is something I think about a lot, especially in terms of Nat and his autism.  Sometimes I feel like autism defines him, and makes him someone who seems younger than he is, less capable, and somehow also more lovable because he bends my heart with his need.  Other times I feel like the autism is just something that gets in his way, that he operates around or through.  It clouds his mind so that he can’t see the right words.  It presses in on him when he doesn’t understand what is expected of him, and the world then seems to be going by too fast.  No, maybe that is when I love him all the more, because I can see Nat distinctly apart from autism and his supreme efforts at purely existing here — and my heart swells with pride.

There is a point in Left Neglected where Sarah crosses over into acceptance.  I don’t want to spoil the book for anyone, but when it happens it is at a moment when she feels both the most ridiculous and yet also the most free — and she feels like a cool person because of the freedom.  Even though she would never be caught dead in this particular situation before the accident.  She finally lets her freak flag fly, which is what it’s all about.

I’m still trying to get to the point where I do not care what others may think of Nat when he is deeply into his stimming.  Or what I mean is, I am trying to get to the point where I do not think anyone is judging Nat when he is deeply into his stimming.  I so often assume they are laughing at him, not getting it; but I really don’t know what their looks or smiles mean at all.  I wish I could be proud of him at all times, instead of feel the burn of embarrassment and anger (at the others).  I admired the way Sarah ultimately handles her own embarrassment and is humbled by her struggle — the way we are all humbled by life eventually.  Once we can move past our feelings of humiliation and say, “Okay, yes, okay,” the way Nat does — “Okay, yes, okay, I am flawed and parts of me are ugly.  Sigh, move on.  Or as Sarah learned when she started walking at last:  Cane-Step-Drag-Breathe.

Whatever gets you there, gets you there.

Wednesday, August 17, 2011

Nothing Sweeter

Long time since I blogged.  I’ve been obsessively trying to make Nat’s group home a reality.  I’ve been traveling (to Provence, which feels like a fairy tale).  And I’ve been trying not to deal with Max going off to college. But it is imminent.

My relationship with Max is a good, solid one.  He was easy to raise.  My main concerns were that he not be too much the Middle Child stereotype, or the Sibling of a Disabled Child stereotype, both of which are about not making any trouble.  I also worried that he did not get enough of the right attention from me; that no matter what I tried, I was probably still psychologically occupied with Nat.

One way that I spent time with Max and Nat, which was not too difficult, was to take them to stores and to the mall.  Not that I would buy myself clothes or anything; I would just wheel them in the double-stroller, and later, walk them into the food court, after we looked at the glass elevator that showed how everything worked.  Max cared about these things; Nat was quiet about them.

The mall we visited most often was Cambridgeside Galleria, in North Cambridge.  It was very close to Lotus, where Ned used to work.  We had one car in those days, and so I needed to take him to work if I was to have a car that day.  On those days, I would take the boys to the Galleria.  We had our routine, of course.  Nat and Max both love routines, even though only one of them is autistic.  People in general love routines and traditions, and that’s what our Galleria jaunts were.  I’d take them to the Burger King for dinner, after a stop at Mrs. Field’s cookies.  We would marvel at the huge flat chocolate chip cookie in the case.  I would buy them chocolate chip cookie cupcakes; I can’t remember much about them except colorful fluffy frosting.

The Burger King was particularly good in terms of the toys that came with the kids’ meals.  Back then, Toy Story One was very big with us, and a theme with Burger King more than once.  Because we went practically every week that year, we amassed quite a collection of Toy Story characters.  At one point we had tiny Buzz Lightyear, Buzz Lightyear in a little rocket, giant Buzz Lightyear in the box like the one in the movie, and a Buzz Lightyear costume.  Maxie was Buzz Lightyear through and through.

After a while, life changed, and we stopped going there.  The Galleria was a bit scuzzy, I realized.  I didn’t miss it.

Things are so different now.  I shop online or at The Atrium, an upscale mall in Chestnut Hill. No one eats Burger King in my family, especially Max, who is a vegetarian.  He also carefully monitors his junk food and sugar because as a kid he would get such stomach aches and nausea from that stuff.  We got rid of the Toy Story box of toys long ago, at a yard sale.  Mostly Max has his own life — already, even though he has lived his gap year with us.  He drives, he goes out and stays out late.  His girlfriend is often here.  I adore her, and she is like a part of the family.  But I have missed Max in the last year, even though he is still here.

Today I needed to go to Cambridgeside because it was one of the few places with a Travelex counter.  I needed to exchange the euros on the Travelex card that I had bought in preparation for Provence. I invited Max to come, just spontaneously.  He said “sure;”  he still likes to shop.

In the car our conversation was awkward sometimes, with most conversations originating with me.  But when we shut the doors of the car, Max said, “Is there a cookie store here?  Somehow I always associate parking garage smells with cookies.”

I looked at him in surprise, but why should he remember Mrs. Fields’ Cookies?  “Oh yeah!” I said, and told him about our tradition of getting the cookie there.  “Hmm,” he said.

We went to the Travelex counter, where they gave me $740 in cash; no checks, no putting it back on the debit card.  We then went to Best Buy, then Borders, which was having a huge close-out sale, and then we split up.  He eventually joined me at the Gap and I spent a bundle of that cash on his college clothes and stuff for Ben.  I started to get tired of being there, and we left.

Back in the garage I remembered the smell, and the cookies.  “Oh!”  I said.  “The cookies!  We forgot!”

Max, in his usual laid back way shrugged.  “Do you want one?”  I asked.  “I don’t need one,” he said, predictably.

We walked a few more steps, a sad pressure growing in my chest.  In ten days he’d be in college.  It had been years since we had been at the Galleria; who knew how many more it would take to come back — if any?  Not that I loved the place.  But I love Max, and I loved his memory of it.

“Let’s go back,” I said, as we dumped our Gap bags into the trunk.  He hesitated.  “Come on, why not?”  We went back to the doors and took the elevator to the street level stores.  We went in the wrong direction and then found the signs for the food court.  As we came to the Food Court, I looked left and there, in ugly pink and orange, where Mrs. Fields should have been, was a Dunkin’ Donuts.  “Oh,” I said.  “I guess we can’t expect that a cookie store would last that long.”

“Yeah,” said Max.

“Do you want a frozen yogurt?”  I gestured to the stand to the right.  But I knew he’d say no.  There’s only so much effort Max will make for sugary food these days.  We walked back through the mall, and stopped to look at the elevator.  It went so far down, ending in black metal darkness.  “Wow,” I said.  I’d never noticed that, or maybe I’d forgotten.

“Yeah,” he said.  “It really is cool.  Look how you can see everything, even the huge counter weights.”  We marveled in silence.  Then we went back to the car, and drove home chatting comfortably.

Sunday, August 7, 2011

A Sea Change

One of my missions these days is to help people understand that communication comes in all, shapes, sizes, and sounds.  It is the verbal people with autism who taught me this.  They are known as Aspies or those with High Functioning Autism, but I know them as inspirations.  Amanda, Ivan, Christchurch, Diva, and so many others have taught me that just as Nat can learn, so can I.  Here is my latest piece, from the Boston Globe Magazine, about Nat, son and my number one muse.