Susan's Blog

Monday, May 31, 2010

No Means No

There was a boy his name was Nat
He couldn’t make up his mind-oh
Yes, yes, no, no, no
Yes, yes, no, no, no
Yes, yes, no, no, no
He couldn’t make up his mind, oh.
–Nat, 4 years old, song from preschool (sung to the tune of ‘Bingo’)

Yesterday we went to a barbecue with old friends. These are people who always make me laugh and always make amazing food. We were all outside for the most part, sitting in their meadow-like backyard while kids played in the pool. We’d brought Nat and Ben with us, Max having been invited to the first of many graduation parties. These days having the five of us together at one time is really an event, sigh. So much so that I find myself thinking, “Hey! Family of Five!” when it happens. (When Ben was born, I’d made up this song:

Family of Five, Family of Five,
So much trouble just to stay alive
They’re always tired
Please don’t get fired
Family of Five.)

Anyway, our friends have a dog and a cat. Every time they invite us up, I ask what the situation will be with Lindsay, the dog, because Nat is afraid of dogs.  It’s kind of a habit of mine, because the reality is that I don’t want my friends to do anything special with the dog; I want Nat to stop being afraid of her.  It’s just one of those things, one of my goals.  I see no reason for Nat’s fear of this dog.  Lindsay is friendly and not obnoxious in the constant-barking, jumping-up, crotch-sniffing way dogs have.  But Nat just fears all of them.  “NO,” he will say when a dog approaches, and he scrambles behind Ned or me, and almost tries to climb up on us to get away.  He is utterly, irrationally, phobic about dogs and cats.

And yet, there is this element of fascination he has for them. He’s not screaming running away.  He’s not teary, or upset.  It’s just this insistent, “NO, NO,” while looking at the dog.  It is not like real fear.  Yesterday I felt that it was almost like a rote response.  Or a game.

So Ned and I set about getting him over it.  Lindsay hung out at our feet for a long time, while Nat said, “NO,” quietly and continuously, all while staring at the dog in fascination.  We extended the backs of our hands to Lindsay to let her lick and sniff them, to show Nat that was okay, and nice.  Everytime we would say, “Nat, show Lindsay your hand, like this!” Lindsay would extend her head towards Nat, watching him in curiosity.

Little by little, Nat started extending his hand in Lindsay’s direction, never close enough for actual contact, and still saying, “NO.”  Lindsay would try to meet him halfway, but she knew that she should not be too forward with him.  This continued for awhile, with us saying, “Nat, really, she’s just a little friend, she likes you, it’s okay,” and all of that stuff you say about dogs, and with Nat still saying, “NO,” and yet sticking his hand out — but always too far away actually to touch Lindsay.

After awhile Nat started smiling while saying, “NO,” and we all laughed.  He never did touch the dog.  He had made up his mind,oh.

Friday, May 28, 2010

Past Perfect

I think I was raised to be a perfectionist. This is not a criticism of my parents; it is merely a statement of fact that we Senators are supposed always to do our best, to try our hardest, to be as kind and smart and healthy as we can possibly be… All not to be better than anyone else but so that we would not be faulted for anything. I think perfectionism springs from a fear being found out as being flawed or fraud.

I also do not think we are unique in this approach. I think most people operate from the need to be on top of the heap. Maybe it’s Darwinian.

Of course I am speaking on a deep, primal, irrational level. I don’t go around feeling fear or struggling to be so very good. But I do notice sometimes, that I am making an effort to “rise above.” What I mean is, I’m often trying not to be part of the problem. What I should have said at the outset of this piece is that I was raised to make the world a better place.

Having a child with a profound disability makes this an interesting challenge. Here you are, sitting politely in a restaurant, perfect manners, smiling kindly to everyone around, mentally wishing a happy time to all… jeez, I sound like Saint Pollyanna of Eateries or something and I swear I am not. (My religion doesn’t do sainthood. Instead, we have The Supreme Jewish Mother inside us, saying, when you bring home an A: “Nu? So you couldn’t bring home an A+?”) . I know I am “diseased to please,” as they say.
So anyway, sitting there with Nat, while he does his thing: puppet hand, self-talking, difficult eye contact, few reciprocal greetings —

(You know what? I hate the way I refer to Nat as what he is not or cannot. People ask me what is Nat like and I say, “Well, he has difficulty speaking, and doesn’t really converse to well… ” It’s like I am ticking off what is not perfect about Nat, what is still unformed. When people ask me what Max is like, on the other hand, I say, “He’s a real mellow, go-with-the-flow kind of guy. Very bright, into technology, coding software, making movies, making animations. He’s going to study film and technology at NYU. He makes apps for the iPhone. He has a wonderful girlfriend…” It’s like I’m selling him, like a product! Like I think we have to reach a certain standard, always. This is what I mean by perfectionism. You don’t want anyone to think you’re slacking off. This is why I have such a problem with my free time. I feel, deep down, that having free time means I am not doing what I am supposed to be doing at the moment. There is an element of almost-panic to my productivity. People ask me how do I have the time to do this and that, and I feel embarrassed, because I do it all to avoid having nothing to do! I hate having opposite problems from others. I hate feeling different. Learning to relax and maybe just go on a bike ride is an achievement I’m proud of because it means I am actually enjoying my free time!

Sure, I know that many times I do speak of Nat in a positive way, but there is the same piece to it where I am trying to — justify his existence? Just like I justify my own: “He has four part-time jobs! He lives with five other guys in the residence at his school! He is happy doing most things and learning new things. He has a lot of friends, loves sports, especially basketball and swimming…” This is what I’m proud of in Nat, these are accomplishments the average non-autism citizen can sink his teeth into.

Again, bear in mind that I am speaking on a more subconscious level, I’m speaking almost theoretically here. This is something that occurred to me while eating in a restaurant with Nat today. At my conscious level, I was so proud of him. Tangibly, I was proud because (here come the “necessary” reasons) he ordered for himself and the waiter understood him. The waiter spoke to him, not to me, about refilling his water. I will let you absorb how momentous that is.

One thing I left out when describing how I was raised: My parents were also probably aware on some level, of the quest-for-perfection streak that runs through our family. And so they often said to me, “Give yourself a break.” I remember thinking that I did not know what that meant at all. I had no clue what giving myself a break was.

I think I know what it is now. Sitting there with Nat today, on the edge of my seat and making sure he did everything right, I was suddenly aware of an even deeper feeling: just pure joy that he was mine, that we were there together. Doing everything right because we love each other, nothing more, nothing less.

Monday, May 24, 2010

Q&A on surviving and making peace

The Globe did a little Q&A piece on making peace with autism (the philosophy), featuring the Survival Guide and me!

Sunday, May 23, 2010

All is Lost

Ned, Ben, and I started watching Lost this past winter because Max is SO into it that we wanted to see what was so good about it.  We have the whole thing on DVD (minus Season 6, of course) and became, predictably, obsessed.  And now we just cannot bear the fact that it is ending. So, of course, to honor this momentous occasion, we all baked a cake:

"Lost" Cake with Smoke Monster & Golden Cave

Lost is the best show that ever was.  It had science fiction, yet, which normally I hate, but that ended up being one of the best things about it (the time travel)!  It had religious themes, character backstories, what-if flash sideways, love, hate, excellent dialog, humor…

…and totally sexy men to watch.

Desmond. Jeez.

mmmmm Sawyer

mmmmm Sayid

My favorite hunk, Ned

Friday, May 21, 2010

All His Base Are Belong To Him

When Benj was a very little guy, he used to sit on my lap at the beach, holding on tight to some little palm-sized truck or being.  He did not like to move from there.  I was his base.  He took a long time to get himself into the sand, and even longer to play in the waves the way he does now.

It worried me, of course.  All the other little kids were sitting on their fat, puffed-up diapers and digging, crying, yelling, laughing, pointing.  Benj could do all of it; he just had to do it from my lap.  I tried pushing him off, prying him loose, setting him down, showing him how to play, but generally, he preferred my cushiony self.  Sweet Baby.  But oh, God, was I worried.  He wasn’t like Nat, but he wasn’t like Max.  So what was he?

He was always content to play on my lap.  He was always content to sit in the big arm chair with kitten Beanies or drawing tiny palm-sized pirate ships over and over and over again. Sometimes he’d ask me to play with the kitten Beanies with him, but he always had such a firm idea of what the game was that it was tough to get it right.  He had such plans, so much going on in that adorable head, such an intense stare, thumb plugged into his mouth as if to help keep it all to himself.  Why did he have to keep so much to himself?  Why did he enjoy solitary play so much?  Why was I the main playmate, for so long?  Why was it always his idea that had to win?

Of course I had him evaluated.  Wouldn’t you, seeing that Nat was autistic, hearing all of the Early Intervention warnings/statistics?  I learned that he was not on the autism spectrum.  He was “normal, but stubborn.”  I was instructed to break into his solitude with other little kids and other games:  to gently insert my own ideas and steer him off his internal path.  But the psychologist also pointed out that she knew our family, so she knew the chances of my actively changing my behavior, into this play therapist mommy, would probably not be stellar.  (We are all islands in this family.  We all have our laptops open at all times, and Ben’s desktop is always on with a project of his.) Dr. W knew us very well and she smiled, saying it would all probably be okay.

That was a great thing for her to say.  He is indeed what she said, and then some.  He is not Nat, and he is not Max, and he is not easy.  No diagnosis, but life comes to him kind of hard anyway.  He’s “got”  Life-Comes-At-Him-Hard-Ism (LCAHH)

Today I was thinking about a friend whose second child was also found to be on the spectrum.  And also another friend who fears it.  I know of so many who did a sib study program somewhere because of one child on the spectrum.  And so much of the time, the sibling turns out to have a diagnosis of some sort, but much more minor.  I was thinking about Little Benj as well.

I had a thought that was kind of radical for me, and please don’t let it offend you:  what good does the diagnosis do in some of our children?  We all reply, “Well, of course you want to know.  You need the services.  You need to know what you’re dealing with.”  But do we?  Do we need to know?  Does hearing, “He has Asperger’s” give you relief, does it change how you parent him?  Really?  How?  Weren’t you already creating structured routines, rewarding good behavior, using five-minute warnings for transitions?  Or did it only make you sad and unsure of what this means?  Weren’t you already worried about some stuff, like where was he going to be in five years or ten years?  Or how would I take him to the supermarket?  Or can he have sleepovers, if he’s on the autism spectrum?  Relationships?  Did the technical certainty from a doctor bring you relief, make a positive change?

Probably not.

Okay you need the label for the services.  I’m not going there.  Nat has come so far with the services he’s gotten.  And then there’s the argument for Early Intervention, the nip-it-in-the-bud argument.  Yes, a good one.  But —

What bothers me is that the worship of EI has gotten to be so fervent that people believe it to be fundamental in Making a Difference Later On.  Pay now or really pay later. But sometimes EI didn’t make a difference later on.  And no one knows why.  Did the kid get misdiagnosed?  Did the schools fail him?  Did the parent screw up? Does it matter?  What matters is that there be supports and structures for him in Later Life so that he can live okay as an adult.  No matter what the diagnosis, if someone is struggling, they’re struggling, and they could use a little help.  You might have an Aspie who simply cannot be left alone.  You may have an adult with Down Syndrome who can live independently.  Life is full of surprises.

What bothers me is when the label confirmed what you already suspected, and made you feel worse. Made you now think your kid had a limitation that he doesn’t necessarily have.  Changed his childhood into one with services and therapies, with assessment and appointments.  If that’s what’s needed, okay.  But I am here to say, don’t let the label change how you see your child.  It’s just words.  You already knew who he was, his difficulties.  He is different, you know that already.  Okay, the therapies may help some of that.  But what you need to do the most is give your kid a childhood to the best of your ability — and his.  You have already been adjusting to the way that he plays (or doesn’t), the odd language (or lack thereof), the eccentric behavior, all the difficulties.  Okay, that’s the disability part.  You’ll do what you can, he’ll do what he can.

But you don’t know what will be.  Benj wasn’t like Nat, and he wasn’t like Max.  He is Ben!

So do you have a future, an entire life with your kid.  And a few letters cannot change that, one way or the other.  He’s got you, his base on the beach.

Little Compton, Rhode Island 2001
Tuesday, May 18, 2010

Just My Imagination

Having a rich imagination sometimes works well with autism — and sometimes it doesn’t.  With my ability to think, dream, and create, I have been able to imagine the way some things could be for Nat, a bit like Jack Kennedy, only I dream of things that might be and ask, “Why not?”  My imagination has helped me have breakthroughs, in that I would give myself new ways of seeing old things, and continue to hope.

My imagination can also be my worst enemy.  The way my autism upbringing began, the evaluating doctor told me a lot of “we don’t know, so you’ll have to find out what’s true for Nat.”  That was the perfect bit of (non)guidance for me in that it fueled my already profound sense of my own intuitive ability.  But you might also say that it ignited my morbidly obese imagination.

Tonight, while talking to Nat on the phone, I detected a scratchiness to his throat.  He was hoarse.  I asked him, “Nat, do you feel okay?”  And he said, “No.”  He did not respond in his usual rote way, tossing off a casual “yes” the way he does even when the truth was a dire “no.”  Tonight, he answered “no” right away.  I then asked, “What is hurting you?”  And he answered,”Your froat.”

Stunned, I asked Nat to give the phone back to R, the staff person he was working with tonight.  Nat understood that he was saying good-bye to me, and he said, “I love you,” which is what I say when we get off the phone, and what Nat says if prompted. Every now and then he says it unprompted, like this time. But I was too overheated to mark it.  I asked R to take Nat’s temp (normal) and to check on him in the morning.  Had he come down with strep, like Max had a few days ago?

I went through the rest of the night with Nat not far from my consciousness, wishing I could know for sure if he was feeling awful.  Knowing for sure is, for me, the Holy Grail.  I don’t know if I’ll ever know anything for sure, and all my life I’ve been able to drive myself crazy with that quest.  Having autism in my life has provided a never-ending list of things I will never Know For Sure. Tonight, I suddenly thought, “What if Nat is lying in bed, in pain from strep, and feeling like the night will never end, and his pain will go on and on, because he’s not home? How do I know he’s not sad and scared?”

I brought this to Ned, of course, because I was immediately filled with too much pain to bear.  Ned said, “Why would he think that?  He knows the drill by now.”  And — splash!  Out went the fire.

I realized that it is just so easy for me to work myself up, believing the worst, imagining an entire Dante-like world of horror in Nat’s mind, simply because I don’t know for sure.  And what’s more, it seems like in doing so, I miss out on the perfect little gem of reality that Nat put in my hand tonight:  not only the “I love you,” but even better:  he told me how he was feeling, for real.  He took care of himself.

Sunday, May 16, 2010


Ned took Nat back and I am sad.  I pack up his bag and the feeling inside me was that this was so wrong.  So sad, mushing his crapped up pillow into the canvas bag.  His clothes, his bright colored clothes, and his messily folded jeans, all tumble back into the bag, that no longer smells like my home.  It smells like their detergent.  And why do they send him with so many clothes?  That makes my heart sink a little.  I know I am sighing a lot.  I imagine him unpacking the stuff, and jamming his pants into the drawers.  Why does that bother me?  Max does it, too — when he even puts his clean clothes away, that is.  Ben’s stuff rests eternally on his desk chair; the dresser seems to be merely a storage space for stuff he will never wear, all the hopeful Gap stuff in non-black.

They all make me sad.  I shouldn’t be sad.  So much to live for, so much to love. But I had children to have children — around me.  Now they’re not.

Why did Ned take him back?  Why didn’t I go with him?  It hurts me less to go sometimes.  And in this matter, I don’t think Nat really cares.  Sometimes I don’t want to draw out the non-caring.  It makes me tired.

You don’t get over some stuff; you get used to it, and then, suddenly, out of nowhere, even on a gorgeous May day, the wound is opened.  Not fresh and flowing like it used to be, but dull and achy, like a phantom limb after amputation.

Walk the Walk: Train Lawmakers Like Teachers

I think that lawmakers should have to go through training, just like teachers do.  Teachers are required to have many courses in education strategies, child development, special needs; and then they also have to do internships, and learn on the job before they take charge of a classroom.  Lawmakers, on the other hand, are simply elected, and they serve based on whatever their experience or record may be.  When I was on our Board of Education (School Committee) a few years back, not one of us was an educator; we were laypersons elected for what we believed and had done in the community.  We were there as representatives of “the people” in town, and not as experts.  We had to meet with and listen to the experts’ recommendations (the superintendent, the assistant superintendents, department chairs, etc.) as well as to weight what we knew the parents and students felt (ideally) and make our decisions based on all of that.  A lot of responsibility and not a lot of expertise, but that is representative government.

What made a difference for me back then was whenever we were invited to take part in an activity of a particular group or issue. For example, we would read to a random classroom anywhere in the school system, on Dr. Seuss’ birthday; it was kind of a symbol of how reading is important.  The kids gathered around me; the teacher sitting off to the side, smiling.  Me, trying to make this children’s book come alive to them.  All in all, a small gesture, certainly one for the newspapers, and yet, not without its actual merit.  Just the half hour I spent in that first grade classroom at a nearby school taught me so much that I didn’t know about teaching.  It made it real to me.  It made me stop and think next time anything to do with “first grade” or “literacy” or “large classrooms” or “challenging children” came up.  However much more a School Committee member could attend events and meetings, made that much of a difference in our ability to represent because we had learned something firsthand, or at least, first fingertip.

Training does not have to involve actually going somewhere like I did.  I am reading Precious, based on the novel Push, by Sapphire, and getting a tiny but vivid training in what it’s like to live around crack addicts, survive child abuse, navigate the Welfare system, become homeless.  I thought I knew something about this just by reading newspapers but the thing is, reading Precious’ story is making me feel what it is like, just a small painful slice.  I caught myself remembering some quick, summary judgment I had made about how “of course, a victim of rape should get an abortion,” and then thought about how Precious feels about baby Abdul, her child and her brother(!), and how she fights to keep him with her.  This is the first time I understood how that could be so.  I also realized how much our social programs helped save her life.  So easy to talk about Waste and Big Government in the same breath, but do we ever stop to think about the millions who are actually helped by Big Government?  Precious was a victim, whose life would have remained shit in a swamp if she had not been able to collect Welfare, go to an Alternative Public School, and live at a halfway house.  All funded by the US Government.  That right there is a modern-day miracle of how the system works. And your tax dollars are going towards repairing the world.

So I got to thinking about how legislators have to vote on item after item with little knowledge about it, and certainly without any training around it.  They come to power with their beliefs already intact.  Often based on ignorance, or worse, on hatred.  But imagine if legislators were made to teach a class for twenty minutes, or work in an adult residence for a little while, or sit behind a Welfare desk.  What if they had to meet with the parties that would be affected by their vote?  Cutting the education budget?  Before you do, come in and teach in that overcrowded classroom, just for twenty minutes.  Against healthcare for all?  Live with an autism family whose insurance refuses autism therapy coverage and who cannot afford any interventions and whose child is in one of those overcrowded classrooms.  Against environmental protection?  Spend a little time in a country where there are no EPA controls and have fun breathing.

The legislator’s life would become much fuller; he’d have less time for meetings with wealthy and powerful lobbyists.  His schedule would be much more finely drawn.  His brain would be stretched and tired; his heart would be soft and worn.  And his votes would be infinitely more intelligent and compassionate.

Monday, May 10, 2010

We just don’t know

All this time I’ve been saying that I have to be careful of being too negative about autism, especially around Nat, for fear of hurting him or others with ASD’s.  I’ve talked about the neurodiversity movement, of autistics and non-autistic family members who argue for the right to dignity, acceptance, and accommodation rather than for a cure.  Or, more importantly, they don’t want to talk about autism with disgust because it is a part of them.

I have tried to tread lightly because I don’t want to be part of the problem; I don’t want to hurt autistics who are fighting for civil rights and dignity.  Nor do I want to hurt other parents who are struggling to help and understand their autistic children to feel bad about what they do.  Even if it is to cure autism.  It’s not my business to criticize them; they are another family and you just can’t do that.  You don’t know what it is like for them.  You don’t know what they know.  You don’t know.

This weekend I started asking myself, “what if I were to think and act as if I really don’t know what it is like for Nat?  Eliminate all the years of assumptions, the labels (MR, DD), the interpretations that I’ve been laboring under.  What if I approach Nat the way I approached “A”, my friend’s son, the other day, that is, assuming in a new way?  Assuming that he understands many things?  I’ve been saying all this time that I believe Nat understands a lot, but that he “just has trouble” getting the words out.  I know it is more complicated than that; but what if it is not that much more complicated than that?  What if I think about that statement, and posit that Nat understands 75% of what people say?  Or 50%?  One third?

Let’s say that Nat actually does understand in some ways what is being said around him — and about him — but that he, like “A,” can’t do anything about it.  “A” is inside a physical form that interferes with his self-expression, his conversation, his interactions with the world.  So, many of those who’ve studied autism theorize that there is receptive language but not expressive.  And the more able to converse an autistic person, the more we hear about how they are aware of what goes on around them.

What, then, do I know about Nat’s reality?  He appears “out of it” when he walks around talking to himself.  But if he understands even a third of what we say around him, that is a lot.  That is enough.  That means that he has some recognition that he is different.  But does he know why or how he is different?

He orbits us, walking in and out of my mother’s kitchen this weekend, where the rest of us gathered to drink coffee and talk.  The noise level of several different conversations at once — Senator style — is pretty bad in there.  Nat is long used to not being a part of the talking, because something gets in the way for him.  He is smiling and chatting to himself, and yet when you address him directly, he stops and grows as still as a stone, as serious as a student in a difficult class.  He looks afraid, actually.  He labors for the answer.  What comes out is something that sounds young, it sounds innocent and “babyish,” and so we have come to feel that he is kind of babyish himself.  Our experience of him is that he’s not really a part of what’s going on, not listening, because of what comes out of his mouth.

But what if we are mistaken about Nat and his comprehension?  After talking to “A,” who has CP,  I am certain that we are.  Because this weekend I set aside all of my previous assumptions about Nat and I looked at him the way I look at Max.  Not that they are the same — not at all.  But I decided that I would not say or do anything to Nat that I would not say to Max.  I would not just go up to him, “Natty!”  and hug him.  Yes, I hug Max at times, but it is always with a lot of checking to be sure it is okay.

What did I notice?  That Nat hung around us a lot, watching quietly, until someone noticed him, and then he would start moving again, maybe even leave the room.  He would get more animated in his self-talking, walking away from us, less “reachable.” I wondered if the self-talking was maybe a defense?  A way to block us out — and our painfully confusing words, our talking-down ways — and have something of his own?

I asked this question years ago, when we first took the boys to Disneyland, when Nat was around 5:  What if he knows somehow that he is really different from us in that he cannot participate with us?  What if he knows, but doesn’t know why? What would a person do with that question, and all that it implies, if he didn’t know how to ask?  If he didn’t even have the inward words to work it out?  Nothing but noise, confusion?  What must that be like?

In the last two years I have seen tremendous growth in Nat’s abilities.  He willingly and competently goes to school and work, and learns new things without any trouble.  He controls his anger now, and finds ways to communicate what he needs, even though his speech level is almost like a preschooler’s.  He has friends, sports; he has preferred activities.  He can go and do just about anything you ask him to do.  He may not understand, and he certainly does not know how to ask you to clarify; but he will go and try to find that book you left in your room, or bring down the laundry.  Always.

I asked myself yesterday, in the morning of Mother’s Day, what if he really does understand some of what is being said around him — and about him — but that he can give no indication of this, just the way that “A” cannot make his words clear and sharp.  You have to listen very carefully to “A.” You have to take a lot of time and effort and focus.  So does he.  But you see that it is all there.

I’m not saying that it is all there with Nat.  This is not just about being able to talk.  There are certainly other issues.  I know he has some delays, processing problems, issues with connecting things up in his brain.  I know there are circuitry issues in his neurology.  But if Nat does comprehend some of what we are saying, then that is an entire universe of knowledge.  That has cataclysmic ramifications for us. It means that over the years he has learned ways of withdrawing from us because he does not know how to keep up.  Because he perhaps suspects that people don’t take him seriously.  That a lot of what he gets from me is this amorphous affection.  A lot of explanation, but perhaps in an overly simplistic way.  A lot of forgetting that he is really right there.

I turned to him yesterday and said, “Nat, I am sorry that I have treated you like a baby at times.  I know you have trouble talking, but that you understand a lot.  I am going to try really hard to just talk slower and wait for you to respond.  I am not going to baby you.”

He listened, looked at me, said, okay.  He looked serious, drawn brow.  I don’t know what he thought or felt.  But I do know that he thought or felt something, and that is so much.

Saturday, May 8, 2010

It just is.

Yesterday I ran into a friend’s son at Starbucks, while I was waiting for Benj.  I didn’t recognize him at first.  I did a double-take, because this was a young man, with a beard and all, but something about him looked familiar.  He was finishing an iced coffee at one of the central tables.

“Are you A?”  I asked shyly.  He smiled and nodded.  “I know your mom and dad,” I said, shaking hands.  We caught up a little bit, not much to say between a twenty-something and one of his mom’s friends he didn’t even remember, but I love his mom, so there I was.  And he was very nice.  He told me he was going to transfer to an art school nearby and study film.  I told him that Max would be studying film at NYU. I studied his face while he talked; I couldn’t believe how grown-up he was, and handsome.

“Well, anyway, tell your mom,” I said, smiling and getting into line for my coffee. I had that same feeling I get when I’m out with Nat; like I know people must be watching us and I’ll be damned if I’m going to make eye contact and let them get their shit all over me.  And spoil the moment.  Because I had really liked talking with A, and seeing how much he had grown.  After all, he has a fairly severe disability — Cerebral Palsy, I think — and he gets around in a wheelchair.  It’s quite an effort for him to talk, although he clearly enjoys it.  But in the years since I last saw him, he had become this young man, out on his own — someone I could chat with while waiting to get coffee.  That kind of growth really does happen.  Of course he made me think of Nat, and the gentle blooming I have witnessed in him the past two years.

I was telling Ned this morning, and the first thing out of my mouth was, “A just has so much courage.”  But then I stopped and said, “Well, actually, I hate when people say that about me,” about how ‘brave’ I am going places with Nat, working hard at my relationship with him, and his relationship with the world.  Brave that I’m his mother, doing the mother thing in such difficult circumstances is the implication.  As if there’s some kind of — choice involved?  He’s just my son, and I love him.

They are also expressing admiration, I know that.  And that’s what I felt about A, too.  But — when people say that to me, still, I always want to scream, “It’s just what I do!  I’m just his mother.  There’s no “brave.”  It just is.”

Same thing about my friend’s son.  This is just his life, and he felt like getting a coffee.

Thursday, May 6, 2010

What it takes

I have sent this letter out to my state reps and senator, to my US Rep and US Senators, too.  Feel free to adapt it to your child’s specific situation and send it to your government officials.  Just google them; they’re all online now.  Elected officials need specific, personal stories to make their case.  They want to hear from constituents.  Our emails and phone calls are their currency.  I have heard this time and again from the senators and reps I know here in Massachusetts — and I know a lot of them.  You should know yours, too.

All I’m asking is that you, my readers, keep housing for developmentally disabled adults on the front burner of our government’s priorities.  This is how you do it.  One email at a time.

Hello Senator____
Let me introduce myself.  I am the mother of three sons, the oldest of whom, Nat, is 20 and has fairly severe autism.  I have written two books about autism and many other pieces because it is just such an encompassing factor in my life. I love my sons, and Nat is a wonderful young man.

Now I am piecing together information so that I can secure Nat a safe and fulfilling homelife as an adult.  I am writing you with this issue in mind.

Nat currently lives at _____ and attends school there.  He comes home on the weekends.  Having him move out at 18 to live at his school nearly broke my heart but we had to do it, because of his aggressive behavior.  My 12 year old son Ben was terrified of him.  Anyway, Nat has improved SO much due to the round-the-clock efforts of the ___ staff.  He now holds 5 part-time jobs (two of which are at Papa Gino’s) and he still attends school.  He helps me when he’s home on the weekends, with food shopping, laundry, and housecleaning.  He is just a wonderful young man.  But he will never be fully independent.

I have spent most of this week meeting with all kinds of people about post-22 housing for Nat.  I have so far met with the Housing Authority president; with the Housing Advisory Committee head ___; with Combined Jewish Philanthropies, and one or two others active in Massachusetts affordable housing.

I also visited the ____Adult Residence housed in ___a few months back, which felt a lot like where Nat is living now __.  We love the level of care and attention Nat gets in the ___ residences.  I am thinking about the feasibility of perhaps through Project-Based Section 8’s and Massachusetts Residential funding for Nat, (not that Nat has gotten anything yet, because that can’t be known until he is 22) beginning a home for young men like Nat.

I want you to see what it is like for parents like me — and just imagine what it is like for parents who don’t have my energy and time (I work my own hours as a writer)!!

I am not panicking, but I am — shall we say — highly motivated and energized about his future!  I am asking you to do what you can to use your incredible energy and sharpness for the developmentally disabled populations, particularly the complex needs of the booming autistic population aging out of the public education system.  It feels pretty dire to most of us!

Let me know how I can help you in all of this advocacy.  I believe in you and in all of your excellent work in Congress.  I want to be able to continue that faith as Nat becomes an adult.

Thanks for listening,
Susan Senator