It’s become pretty clear to me that there is another dichotomy in the autism community, and that I have to talk about it: the high-functioning autistics vs. the parents. This split is as lethal as the melting ground in a volcanic eruption. I am not talking about it to piss people off, though. I’m writing about this because I am sad about Nat and this question is like a moldy lump inside me that needs to get some light.  I do not want to hurt people by saying this stuff out loud but I have to talk about this.

I have many friends in both worlds, needless to say. This is a passionate community where friendships are forged from the deepest of despairs: the idea that something is wrong with your child. For the parents, having a child with autism means lifelong worry.

That statement alone is enough to inflame many autistics, however. So many of the high-functioning and Asperger’s group feel that autism is not the problem. Autism is a different way of being, of perceiving. If the autistic person is given the right supports, therapies, and education, and a chance to succeed, then there is no problem. The problem, to the autistics (I’m generalizing for simplicty’s sake), is with society. Society does not fund autism interventions or therapies nearly the way it should. Society discriminates, by insisting there only be one standard, one way of showing intelligence — mostly through being verbal. Society (going by what the media reflects) insists that people focus on what the majority focuses on — love, friendship, career, health, attractiveness, popularity. But these may not be what autistics focus on. If an autistic’s very perception is different from a neurotypical (NT) person’s, then by definition the autistic will be excluded, discriminated against, thought of as inferior.

If you can’t do what the majority can do, you are different. Different is usually not liked. Again, I’m not saying I feel this way, I am trying to reason out what I think happens out there. Different is usually disliked. The deeper the difference, the deeper the int0lerance. The more resentment. And yet we as a country legislate compassion — and rightly so — with programs like Medicaid, Welfare; we legislate fairness with Affirmative Action, and the Americans With Disabilities Act. And so, because we legislate and fund help for the different, the different then have a chance to become less so.  But what happens when they do?

Should autistics be trained to some degree to lose their appearance of autism in the name of having a “better” life — or would their lives be better without the attitude that different is bad? The divide is whether you believe that autism is an inherently good or bad thing. The divide is about who can speak for whom. Should a parent push their autistic child to be as NT as possible (suppress stims, learn to speak) in order to live a better life? (“Better” meaning more like the mainstream, or at least more independent of others’ help) How far is too far? We all agree that we should do no harm. But how do we define harm? Many parents feel that you should do everything you possibly can to mitigate the autism: education, speech therapy, SI, behavior mod, biomed interventions. And many high-functioning autistics feel that if you do this with the underlying assumption that autism is something to be rid of, you are abusing the child because you are giving him the message that he is inferior. Because autism, to many autistics, is a part of them, and not a bad part.  To the parents, the autism, the autistic behavior, these are problems that should be fixed to whatever degree possible, because they are getting in the child’s way of a better life.

The divide is about not knowing where the truth lies, if there is even a universal truth.

My truth is pretty much only about Nat. My need — the purpose of this post — is to admit that I don’t know what he knows, and that is a huge source of pain for me. If I see him sitting around doing nothing except move from to chair to chair throughout the day, I feel bad. I look at him in his fullness and his clear, complicated eyes and I ask myself, “What kind of life is that?” Yet to give him a chain of activities, even to have him choose between a few, feels like I’m forcing an agenda on him. The choices don’t usually make him smile, but is that because he doesn’t know to smile, doesn’t smile socially, or because he truly is not happy about the choices?

Many high-functioning autistics and Aspies will tell me to presume competence. Assume that Nat understands pretty much everything around him, everything he hears, but he does not communicate that. He chooses not to, or he cannot. Either way, assume that he is at roughly a 22 year-old’s level of comprehension. Remember those who suddenly speak at 30 and say, “Don’t treat me like a child.”

But the parents experience their child differently from this. Or I should say, I do. Only sometimes can I see that Nat is understanding what is being said. Many other times that is not at all clear. Ned says I read meaning into what Nat does, that I project. Ned’s attitude is — to simplify it a bit unfairly — work with what we got, work with what we see, make the best of that. Don’t make shit up.

But I often feel that I am intuiting what Nat feels and connecting with him and enabling him to do more and grow. My attitude is more like: what if Nat does know close to everything that is going on around him; then shouldn’t I be treating him as if he has Asperger’s, and taking him to Aspergers Association of New England meetings, to Autistic Self Advocacy Network meetings?  Talking to him all the time, the same way I talk to Max?

But what if he needs a slower, more simplistic way of talking? If I presume competence, I may end up talking over his head and excluding him!

I think that the more negatively you see autism, the less you can believe that there is someone there. In effect, you experience him as less, as different, as not fully able.

Or is it that the more you hate the autism, the more motivated you are to build the child’s strengths and make him more successful — and perhaps “less “autistic?

I was crying a lot this past week, but it ended well. Does that make it okay? At some point, do we run out of I did this, but at least it ended like that. Is there a limit on how many bad days one member of a family can have?

Writing this now I can scarcely remember why I was so weepy. But I do know that it had a lot to do with feeling disconnected from my family. I felt so irreconcilably different from the four of them. They — we — are all such islands. But I’m an island that wants at least to be a peninsula, attached somehow. (What an ugly, stupid metaphor.) Ben is enjoying his winter vacation from inside the depths of Hyrule. He surfaces occasionally for  12 o’clock breakfast or a 3pm lunch. He has too many oreos, not enough exercise. Yet he is increasingly muscular, taller than me, lanky, gorgeous acne’ed teenager. He still lets me in a little, showing me cute or freaky stuff on the Internet.  He is deeply attached to me, somehow; I feel it.

Max is home from college for the month, out every night, up late, sleeping late, when he’s here he’s with his girlfriend. We did have him to ourselves on Thursday, and on that day Ned and I got him to take a walk with us. We went, of course, to Starbucks. Even without Nat that is a perfect short walk, up our street, down the hill, across Route 9, and into The Village. I get a skinny vanilla latte, Max gets a hot choc, and Ned gets decaf and a slice of the cake-like bread. We share it, cramped around a small table. I love this.

I don’t know what we talked about; maybe the different genres of computer games. Some about Max’s classes and floormates. I just drank in the beauty of him and his life, along with my toasted-marshmallow-flavored drink. We walked home and got there just in time for Nat’s van.

That night Ned made dinner, not me. One of the things we realized, he and I, was how much I’ve been hating dinner. Really hating it, not like funny-hating it. It’s been almost painful for me, from 3pm on, to come up with an idea of what each person will actually like, something not too fattening for me. To then wait until around 6:30 to start it, because Ned has to finish work. Not to snack until then.

And then, the dinner itself. If all the boys are there, it can be just as bad as if none are there, because they all have their own things going on, and they are not sharing nothin’. I sit there, with my spare plate and look at their full plates and their full lives — even Nat’s is full and ahead of him, but is it the life he wants? — and not knowing that, and yet seeing them in their fullness and potential, I want to leave.

The geography cure, a long-ago therapist once called it.  How can I be this ungrateful for everything I have? But there it is, I’d been getting in my car all last week and fantasizing about driving and driving, away.  I finally told Ned; “told,” ha, that’s a good one. We had a huge nasty fight. They all heard it, Goddammit.

How much more can I say I’m sorry?  All I can do is keep trying harder. But then my life feels like one big TRY.  All that helps is for some time to pass, for them to see that I’m okay, it was just a bad day.

Usually I clear my plate before everyone else and clean, clean, clean while they eat. My mind is on being in a different room, away from them. That makes me sad, and I don’t know why I feel that way. What I know is it is so different from when I’m in Starbux with them. Our  Starbux date is a moment in time, aware and crystalline, surrounded by earthy chocolatey smells and people on break, just wanting to be there for that brief time. Creature comforts of heat, of sweet aroma, and of satisfying our hunger and thirst. Starbux is the new communal cave, where the hot drinks bond us like fire.

When Ned made dinner Thursday — and it was a dinner that Max came up with and helped with — I felt so privileged. I felt royal. I was the Princess, the one female in the house, and it was special that night. I found I could sit, and stay, linger and listen. I could live there, after all.

The Washington Post ran this oped of mine on Christmas Day:

Tiger Mother to an autistic son

I was reading Real Simple waiting for Ben at the dentist, an article about meditation, of all things. I don’t meditate, I medicate. Ha ha. No, the truth is, I’ve always wanted to meditate, but I didn’t really know how. Blank your mind? Empty your mind? In my brain, the minute one thought leaves another one moves right in. Sometimes there is overcrowding.  My head is like a poorly-run group home, where the uneven ratio of helpful thought to overly active impulses spells trouble most of the time.

My tumultuous emotions and high stress levels make me a perfect candidate for meditation, and so I read the article with great interest. The bit that stuck in my mind the most equated the meditative state with watching a river flow, where your thoughts are like leaves floating by.  Leaves floating by, I thought. I can do that.

Since reading that I have found several opportunities to try this out. Once was after a particularly disappointing phone call. I envisioned the stream and the leaf and noticed that this metaphor allowed me to have a kind of distance from my feelings that I have never felt right when something bad has happened.

I tried this several more times; there was no emptying of my head, no need to push thoughts away to maintain some kind of blankness. Rather, the simple practice of picturing the curled brown leaf passing along on the curve of the current gave me a recurring separation from the event. One day later — today — I had the realization that what this was doing for me was showing me for the first time in my life that feelings, events, pass by. I am not my feelings. I am not what happens to me. I am something else, next to, or underneath the feelings.

My insight stops there. I’m not ready for more. I have a friend who is a master yoga teacher, a longtime meditator, a person who is  beyond being crushed by others and brought low by weaknesses or events because she knows, just knows, that there is so much more to us, to life, than this particular body, this particular moment in time.

I have not been able to listen to her. I don’t like those thoughts of hers. I want to matter, I want my moment in time to be utterly unique and momentous. In fact, she and I don’t really talk to each other anymore, because of these large differences in our outlooks. And yet there is some comfort I have found from my little leafy stream exercise, some measure of sanity and sweetness I am getting from that small distance from — but not repression of — my bad feelings.

The phone rang a little while ago and it was Martin, from Nat’s former group home at school. He was just calling. He wanted to know how Nat was doing. I told him all the news — the surprisingly easy transition to home, the new job at CVS — and Martin was clearly delighted. He spoke to Nat himself, but I could see that Nat was worried that this call might mean he was not going to his “new apartment in winter,” which is what we are calling his new group home. A while back I told him it would happen in the winter, and so this is what Nat calls it.  (All I can say is, the thing better be ready soon, because today is the first day of winter!)

I hung up the phone and felt my tight chest, the clogged feeling of an overstuffed heart. I am just so blown away by what people are capable of, by the reality of love. I realized that love was one of those feelings that does not flow by me, however. Love gets stuck on a rock or in a throat.

I sat on the corner of the couch, in the light, near Nat. He was leaning on his hand, looking at me. His brows were raised. I said, “It was so great of Martin to call.”

“Apartment in winter,” Nat whispered.

“Yes, darling, of course,” I said. “Martin was just calling because he loves you. You are still going to the house, the apartment that we saw on Saturday. Soon.”

“Yes.”

“So many people love you Nat.”

“Yes.”

We just looked at each other, and I felt how special he is, that particular human being, this particular moment, this life.

Here is a new book that I highly recommend: The Thinking Person’s Guide to Autism. This book is savvy, witty, compassionate, and useful. Contributors include longtime mom bloggers Kyra Anderson, Jess Wilson, Kristina Chew, and someone named Susan Senator, for starters…Here is more info on it:

Thinking Person’s Guide to Autism: The Autism Book You’ve Been Waiting For.

Redwood City, CA December 19, 2011 — “Refreshingly free of dogma, disinformation, and heavy-handed agendas, Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them.” — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science

Thinking Person’s Guide to Autism is the book we wish we’d had when autism first became part of our lives: a one-stop resource for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.

About the Editors

The Thinking Person’s Guide to Autism editors are Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg. Each woman writes, educates, and advocates within the autism communities. This project has its foundation in their collective parenting, science, education, and self-advocacy experience.

For more information or review copies of THINKING PERSON’S GUIDE TO AUTISM, please visit www.thinkingautismguide.com/p/press.html or contact our media relations department at 650.260.8742 or thinkingautism@gmail.com.

Publication information:

Available: on Amazon http://is.gd/TPGAonAMAZON and at Createspace.com http://is.gd/BUYTPGA

Paperback: 370 pages

Publisher: Deadwood City Publishing (2011)

Language: English

ISBN-10: 0692010556

ISBN-13: 978-0692010556

###

Strange how I’m a perfectionist in some ways and Ned is a perfectionist in others. While Ned worries deeply about getting tasks done correctly — whether projects at work, paperwork at home, fixing things — he does not worry overmuch about how he’s doing with the kids. I, on the other hand, think of myself as a “big picture” person, which is really code for “lazy”, meaning, I’m someone who thinks big and is perhaps a visionary at best, but sloppy and screw-the-details at worst. But when it comes to the kids, my worrying is a bottomless pit. I don’t know if I ever rest comfortably on the ground of an interaction with Nat, Max, or Ben.

People say that kids are resilient, and I should believe them. But I don’t, deep down, in my non-resilient little girl heart. I had a mushy center, I was bruised easily, and I held/hold onto grudges. So because I don’t know how to let go of stuff, I fear that my kids don’t, either.  I know I must be wrong, but reason gets stuck in my soft core.

I saw some shopping carts at the supermarket today, the kind that have little cars attached for a toddler. I know they did not exist in Nat and Max’s day. But Max insists that they did, and that I didn’t let him ride in them. Why wouldn’t I? I would have, but they did not exist! Where does this sad little memory come from? He also reminds me of how I “killed” Seater, Tiny Mouse, his imaginary friend. I may be guilty of that. My accessory, however, was our pediatrician at the time, who scared me by saying that imaginary friends should be gone by age 6. This was back when I had no internal certainty, and so I believed her, and kept asking Max if he knew that Seater wasn’t real.

Today I was remembering that stuff and feeling sad again! But then a thought interrupted, saying, “Get over it, Max.” And then:  “Actually, get over it, me!” Then I felt this relief rush in, and said out loud, “Yup, you were not a perfect mother, not at all. Nor a perfect wife, God knows. You do the best you can, under the circumstances…”

What are “the circumstances,” I then asked myself. The stress from Nat and autism? But the clear, clean rush of thought swept in again like a raging river, washing that one away: “Can’t blame Nat. Take responsibility, but don’t blame anyone.”

Where did this voice of strength and reason come from?  I don’t know.  But I look at my two older sons and I see who they are. Max has adjusted so well to NYU and living in New York City and all that comes with that; he feels centuries away from me. Competent, clear, confident, content. Walked into that dorm room and never looked back, just like when he was a little guy starting preschool. I was the one sobbing outside in the playground.

And Nat. One month out of school and he’s surging forward. No more school, the end to decades of academic structure and one-to-one ratios.  Back home, with his flying-by-the-seat-of-the-pants family. Good stuff for someone who needs consistency, right? Yet he seems fine. Starts his Day Program, all new people, new outings, new tasks, new workplace.  A ratio of around one to seven. He just goes. Today his transportation started up, and off we went in the new blue van packed with 10 other adults going to their Day Programs. He did not hesitate; he just climbed aboard.

I’m the one who’s stressed, who’s always wondering, “is it okay? Did I do that right?” Terrified at how I’m screwing up my children. Wanting to be perfect. It’s an illusion, though, that if I’m perfect to them, they will grow up with no problems, and everything will go well. It is nothing but magical thinking. Perfect cannot happen. Nor should it.

Today — at least for now — I’m all business. Maybe later I will write about Nat. But honestly, If you like this blog, you will love my novel: Dirt, A Story About Gardening, Mothering, and Other Messy Business.  There is a Nat-like main character in it! You can order it easily from Amazon, at this link. If you like it, write a review on Amazon, give it as a gift, and maybe I’ll be able to sell my latest autism book, about adulthood!!  I need to impress a publisher…

It is a guaranteed thought-provoking experience. What have you got to lose?

I know I’m kind of obsessed with Nat, with figuring him out and expressing my feelings about him. I’m so glad to have a blog, so I can get it out, tease it apart. When I get sick of being a blogger, but I want to write, Ned asks why I don’t just write it for myself; why do I have to publish it on the Internet?

Because it wouldn’t feel as real to me. The stuff I write that I don’t show anyone — that stuff feels stupid, half-assed. As I write this I’m wondering if this one will fall flat. But I don’t think so, because I have that feeling that there’s a pull in here somewhere.

I need to say my thoughts out loud — in this case, onscreen. But when I can’t write, I talk to myself. Especially in my car. That’s when I figure a lot of things out, driving to some dumb place or another. It isn’t enough just to think it: I have to say it.

So I wonder if it’s the same for Nat, the way he talks to himself in his own language of stretched out or half-swallowed English. Does he have to hear it out loud? Does the out loud make him feel more here? Less lonely? What is Nat’s usual state like? He moves from room to room, bed to couch to chair, and then maybe perches on top of our coffee table. He makes his sounds, very high-pitched and then low. Suddenly there will be a word I recognize, and I often jump in and nab it. Sometimes he likes it when I do that, sometimes he doesn’t.

I think that he doesn’t like it when there is an expectation that he respond a certain way. I think at those times he does not want the hand offered to him. He wants his words out there, and just out there, moving forever outward into space. I, on the other hand, need to throw my words outward like fishing line, hoping they’ll catch and bring me something lovely.

In this way we are very different, Nat and I.

This dynamic played out in two different ways today. This afternoon I told him that his one-on-one wasn’t coming. He said, “Heeyah John.”

I said, “You’re thinking about John.”

He said, “No.”

I said, “But you said ‘John!'”

“No-oo.”  And he put his hands over his ears.  I thought I’d upset him, but then he started laughing, jumped up, and left the room happy.

At dinner tonight Ned started talking about how he was going out to a Django meetup.  “When will you be home?” I asked.

Nat picked his head up from staring at his food and said to us, “Yes, Daddy will be home.”  To me, this meant: “I’m anxious (or curious) about you going out. That’s different from our usual.”

“Well, Daddy’s going out now, but he’ll be back at 9,” I rushed to explain.

“Yes,” Nat said. And then, “heeyah home.”

Okay, he said “home.” But I remembered this afternoon and I didn’t want to pop this sweet bubble, this moment of mutual understanding encased in the most fragile of membranes.  So I said as quietly as possible, “Yes, he’ll be home at 9.” I didn’t look at him for long, and I did not ask it. I did not put it to him with any expectation or bridge to me. All I did was blow out a gentle reassurance of the temporary quality of this break in the routine.

And he looked at me nervously, knowing what I was doing.  Without my expectant sentence swinging upward on its last words, hanging heavily in expectation of him, he was okay with my understanding him and repeating it. Because it was not too much pressure on him, the pressure of connecting, he could simply answer: “Yes.” It makes sense to me. In a world that judges your intelligence by how well you spew words, it must feel awfully threatening to be on the spot if your words lay hidden from you.

Naturally I’ve been worried about how Nat is doing in his Day Program. Now that he has his transportation lined up, I don’t drive him there, so I don’t talk to the staff. I’ve asked them to use a notebook to give me just a thumbnail of his day, but neither they nor I have been very good at keeping it up. Now I email them.

It’s never been very satisfying relying on Nat to tell me things, especially accurately. He just doesn’t like to talk. I’ve actually asked a few higher functioning autistic adults how I can get him to communicate, and the answer pretty much was, “if he doesn’t want to, don’t make him. Often autistic people don’t see the point of/cannot manage small talk.

But my questions are anything but small. What Nat does with his day is big. Big talk. I just want the basics. So I sent the Program Director an email with a lot of questions. She answered them, and then I fired more at her. Those she answered as well. My main concern was about Nat’s work outside of the DayHab building. I told them I wanted him to do volunteer work even when he wasn’t in the Day Program. (You see, DayHab is different from Day Program, even though they operate out of the same building, through the same organization. But DayHab is Medicaid money, and so there are requirements and regulations about how it is spent. A consumer cannot work in a DayHab; he has to do rehabilitation and therapies, anything that helps him function. Day Program, on the other hand, is funded by our state Department of Developmental Services, DDS. Day Programs are most often work programs, jobs with transportation and a job coach.  Nat is doing a DayHab/Day Program split during the week.)

I chose this particular DayHab for two reasons. One is that Nat’s old friend S is there; S’s mother is an autism power mom, so I trust her choices for S. These days S works in a CVS. When I heard that I was so psyched for Nat’s future, remembering his success at Papa Gino’s.  The other reason I wanted this program is that they have a unique view of what is therapeutic, and so they get their clients volunteering sometimes. No pay, no job coach, just a small group with a staff person. Perfect, as far as I’m concerned. But I don’t know if Nat is doing that or other things.

Since my emailing, I have a better idea. And it turns out that Nat has told me everything accurately. Two weeks ago, for instance, I asked him what he did after Meals on Wheels. “You went swimming,” he said after thinking for a while (the wait time for conversing with Nat is very, very long.)

“What? Swimming?” I said. “But I didn’t send you with a suit!!  What did you go in?”

“The pool,” he said. Darling!

“No, Nat, I mean, what did you wear?”

“A towel.”

“I mean, what did you wear in the water?”

“Bathing suit.”

“Really? But I didn’t send you in with your bathing suit! Nat, what color was the suit?”

“Brown,” he answered.

Jeez. So what the heck did this mean?

I asked the staff the next day. Sure enough, they told me they swim once a week, usually Thursdays.

“But he didn’t have his suit!” I said to the Director.

“Oh, we have suits here. And towels,” she replied.

“So — what color are they?”

“Brown…”

Ah, accuracy. I am having these kinds of conversations with Nat more and more. Interestingly enough, we have also decreased his Risperadone.  We found we kept forgetting the afternoon dosage, and realized that Nat was no different without it, so now he has less. I believe that the Risperadone acts like a sedative, and makes him less inclined to speak. What would happen if he were off it completely? This is a goal of ours, to find out gradually if he needs it anymore. This kind of progress makes my heart float.

So tonight I asked Nat where he went to work today. Long pause, then “CVS.”

I knew this was right because the Director had told me. “Oh, wow, CVS! Great! And what do you do there?”

Longer pause. “Put milk away.”

I thought about this. Yes, that’s right, didn’t they tell me he was stocking the coolers? What an excellent choice for Nat, the master of cleaning up and putting away!

Then I threw in: “Who did you work with?” I was thinking of the staff names, when Nat said, “S.”

I realized he meant his friend, S, who does indeed work at the CVS!

Can it be that this is actually working out?

Ned wakes up with a wheeze and a cough; I go to bed with the same. I’m forever cleaning dust, wiping it away, sucking it up. I hear that we’re dust, too, somehow. Benj used to say that dust was skin cells and the Bible agrees. So many actions in our lives are these small repetitive movements, of living, dirtying, cleaning, renewal. Movements and moments of tiny living, tinier dying.

This does not depress me right now, though. The other day I thought of the phrase “Sparks in the darkness,” from the James Taylor song There We Are:

There we are,

sparks in the darkness,

speaking of our love,

burning down forever and forever.

This song has particularly sweet meaning to me because this was one of the first songs Ned shared with me when we were first almost in love. I didn’t like James Taylor back then, but once I heard that song, I did. The lyrics are simple, innocent; his voice, just plain James, unaffected.  He reminded me so much of Ned, that was (is) Ned’s essence to me. I’d never met anyone so pure, so still, so sure. I was consumed by a soul-squeezing, breathless love almost as soon as we met, that just grew more intense as we remained friends only — his request.  For the better part of a year, I hung back, my brain screaming, “Why? Why? Why can’t he love me?” Until finally I let go of it. One spring day as we went our separate ways — he to 1920 Commons dining hall, I to class, I thought, exhaling deeply, “Okay. If that’s what it has to be, I’ll take it. I love him no matter what, that’s all there is to it.”

Just like that, everything changed. Just two days later (I think), he became my boyfriend.

That was thirty years ago. It’s not just the years that have changed us, it is everything. These days so many of the couples I know are just barely together anymore. There’s not that strong a line between divorce and just kinda staying married. I think that I have not really understood that, not really known about that, until recently, when the stress in our life pushed upward to a whole new level, and I became very very sad. The uncertainty about Nat just weighed on me, pulling at my heart, making me hurt inside all the time. I kept thinking back to a different period in my life, when I felt like I had it all. This, surprisingly, was not when I was a young woman newly in love. The had-it-all time was more recent than that, around the time my first book came out.

I went away for one night, all the way to New Jersey, to my sister Laura. She’d heard a few words out of me on the phone and she said, “You need to come here.” So I did. She fixed me up. I slept in her guest bed. The thing is, she has five cats and I’m highly allergic. I didn’t care. I didn’t care if I wouldn’t sleep all night, I had to be there. Laura, being a doctor, had allergy stuff for me and so it worked out. I woke up in air dusty with cat dander but I was okay.

Last night Ned and I went together to drop Nat off at social group, because we figured we could catch a little dinner out during the time he was gone. Because we were early, we sat in the dark of the car together waiting for people to arrive. A young mom pulled up and and got out to pick up her child and I thought of the complicatedness of her life, this little task, all the intricate parts that made up this little task:  the car and its own engineering and troubles, locking the car and what that implies, being unconscious of all that as she rushes in to get her little girl. Maybe not even thinking about her little girl because she was thinking that there was dinner that still had to be made, for the family. Maybe her husband was a pain in the ass and never helped.

I thought of our busy-ness. I said to Ned, “We all do this, we all think we are so important, every little thing is so important, yet we will all be gone one day. And that’s really the way it is. Everyone always thinks that their own bits of their life are so important. It’s what we do. It’s what humans do. Every animal does his thing; humans create intricate lives. But still we are only a tiny tiny part of all the others before and after us. Sparks in the darkness, remember?” He did.

It made me feel good, like I was part of something, even if I am ultimately just dust, part of the mass that makes up the universe. I felt  lucky to be one of the living doing my little thing, right now.

Last week I wrote this letter to the Editors of the Boston Globe concerning the importance of Medicaid.  Today it was printed:

To the Editors:

THANK YOU for the strong message about the dangers of turning Medicaid over to states and block grants ( “Medicaid has a problem, but block grants won’t solve it,’’ Editorial, Nov. 25). The Republican sound bites about the waste in the Medicaid system are often based on political motives, not fact.

As the mother of a young adult with autism, I depend on Medicaid to fund my son’s day program. I would invite any political candidate to visit one the state’s programs and look at what they do on spare budgets. Look at the remarkable ingenuity of programs that provide entire crews of unpaid volunteers to work for valuable businesses like Meals on Wheels.

Anecdotes on waste should not indict an entire support system. Nor should quality vary so much between states, as it would under the block grant proposals. Though far from perfect, Medicaid is the only thing standing between so many disabled people and a wasted life in aging parents’ homes – or even a life on the streets.

Susan Senator

The last of the leaves have settled to the ground. Every time I ride it seems I happen upon a leaf dance, where a handful of them swirl around each other, their translucent yellow skin catching bits of fiery sunlight. It feels like a good autumn — now — because I, too, have settled into my new routine — of Nat living at home — and just today I had a little time to think about things.

I was sitting on a park bench in Boston Commons, having just finished teaching my Tuesday class. I was talking to my mother on my cell, while people walked by me snapping pictures of the State House and the impossible steepness of Beacon Hill. A guy was spearing trash and the pigeons were happy in the warm air; you should see them when they’re cold and unhappy, sitting so still and close to the ground, fat and round like potatoes. I was telling Mom the news, catching up from when I last saw her at Thanksgiving — we talk frequently.

I described Nat’s days and the problems we’ve been facing, mostly of getting used to working with a staff person. This guy is a competent, capable young man whose job it is to work with Nat from around 4 until 6:30 every day. Even before we hired him, Ned and I knew that this part of Nat’s day would likely be the hardest. For years Nat has been accustomed to being productive at his school residence, but completely relaxed and on his own at home. And now, after years of this routine, his days at home are now being structured.

“We’re having a lot of trouble coming up with things for Nat to do,” I told Mom.  And, as she always does, Mom swung into problem-solving mode: “Why don’t you have him do some of the food shopping, everyday. Don’t buy all that you need when you go food shopping; leave some for him.”

This was precisely what we had started doing for him, and I began to tell her that, when a thought popped into my head: this is his life.  Then I felt a strange lightening inside, a billowy softness that I tried to understand. I said to Mom, “See, the thing is, it’s not a matter of coming up with activities to keep him busy.  Not like what we used to do [or what the school and residence did], chaining one activity after another, teaching ‘leisure skills,’ and then ‘travel skills’ and then ‘computer skills,’ or ‘social skills’ in order to keep him structured and out of trouble.” (I did not say it like that, but those were the ideas that were forming.)  Suddenly what I wanted to think about was what is it that people do with their time after work? What do I do?

Nothing. Everything. Something. Just stuff to keep going, keep living, enjoying what I can.

My discovery took wing. I had images, clips dancing around my eyes, of necessary and frivolous errands; sometimes I go to CVS knowing I need batteries or Claritin but feeling happy once I’m there because I can browse the new makeup and buy a Diet Sunkist for the drive home. Or I put a load of laundry in and then go mail some stuff.  An hour goes by, the laundry’s done, I think about what I am missing for dinner.  And then there’s catching a movie, spur of the moment, going out to dinner, walking around Jamaica Pond. These are the things Nat can do. Just the mixture of purposeful and aimless that we all deal in after work.

These thoughts came to me like the deep breath you finally catch and pull into your lungs after a strenuous hill. That’s all I have to do, I realized. I have to think of Nat’s days in a slow, unfurling way. We’ll all have to see — Nat included — what his days have in store for him, how they will arrange themselves around the fact of the staff person. I have never thought of Nat’s life this way before, like something rolling out before him, to be created–and revealed–all at the same time.

I am trying to get gigs for book groups, book talks and autism group talks.  Below is some of the publicity material for my latest book, my novel Dirt: A Story About Gardening, Mothering, and Other Messy Business.

Susan Senator is a writer, speaker, political activist, wife, and the mother of three boys, the oldest of whom is 22 and is severely autistic. Susan likes to say: “With autism, never say ‘never.’” She is the author of the Exceptional Parent Award-winning Making Peace With Autism:  One Family’s Story of Struggle, Discovery, and Unexpected Gifts, (Trumpeter, 2005), and The Autism Mom’s Survival Guide (For Dads, Too!):  Creating a Balanced and Happy Life While Raising a Child with Autism (Trumpeter, 2010)  Her new novel, Dirt: A Story About Gardening, Mothering, and Other Messy Business (Stellated Books, 2011) features a severely autistic young man as one of the main characters.

Susan has written articles and essays on disability, education, parenting, and living happily, in the New York Times, the Washington Post, Boston Globe, Exceptional Parent Magazine, Family Fun, and Education Week. Susan also teaches English at Suffolk University in Boston and is a popular blogger. Her writings took her to a state dinner at the White House in honor of Eunice Kennedy Shriver and the Special Olympics, in 2006. Susan is available for booktalks, conferences, and workshops. See http://susansenator.com

Here is what some have had to say about Dirt:

“Loved it top to bottom! Senator’s prose makes colors and emotions bloom like rare flowers on the page. A glimpse into the marriage garden, weeds and all, with a story that blossoms before you.”   —Kim Stagliano, author (with foreword by Jenny McCarthy) of All I Can Handle: I’m No Mother Teresa

“Dirt is an honest and moving novel about very real people. Anyone whose own family isn’t perfect (and that’s all of us) will relate to the Grahams’ struggles to hold on to each other when so much threatens to pull them apart. Sometimes you can’t solve all your kids’ problems—sometimes you just have to love them. Senator understands this and she makes us understand it too.”           —Claire LaZebnik, author of Families and Other Nonreturnable Gifts

“Susan Senator’s novel, Dirt is as pleasurable as it is unforgettable. Through vivid characters and seamless prose, Dirt gets to the heart of family and the power of love to pull us through. Dirt is a book you will take with you long after you’ve devoured the last word.”    —Emily Miles Terry, New York Times Bestselling Author, Nesting: It’s a Chick Thing

“Senator gets it all right. The characters breathe, they are all likable, believable people struggling to do the best they can under enormous pressures. It’s a realistic novel: things don’t magically get better, problems don’t disappear, but what does crystallize is the parents’ intention to see each family member as the unique individual he is, and to honor that individuality and the specific needs and issues, rather than focusing on how those individuals revolve around Nick and his needs. One of the better books I’ve read that incorporates autism into its narrative and one I can wholeheartedly recommend.” —Kim Wombles, blogger, Autism Blogs Directory

So far, I have published two books having to do with autism:  Making Peace With Autism, and The Autism Mom’s Survival Guide.  and one novel that features a deeply autistic character:  Dirt, A Story About Gardening, Mothering, and Other Messy Business.  It is my very biased but honest belief that these books would make excellent holiday gifts. Making Peace is good for those beginning to come out of the haze of diagnosis, who are trying to regroup and reconfigure their family life with autism in the mix. The Survival Guide is good for those starting out, needing to figure out how they can still be whole people in their own right, how to have fun, how to look at this huge thing called autism.

Dirt is a novel, my latest book, and it is a story of a suburban family of five affected by autism as well as other issues — divorce, drug abuse, sibling rivalry, infidelity. The characters intersect intensely, including the highly autistic oldest son, Nick.  He is barely verbal but he is a full character in the book nevertheless.  Dirt is a fun and thought-provoking read and a good gift for anyone who like contemporary family novels. Good for gardeners and families alike!

Okay, now it is time for a little bit of politics. With the Supercommittee about to act — or not — either way they are taking action — it is time to weigh in with our senators and reps.  Here is how you email your own senators and reps. And here, below, is a template that you all may use. You may not believe it, but I know for a fact that senators and reps take these emails, letters, and phone calls to sessions and show the others what their constituents have told them!  Your letter will help. Just cut and paste mine and substitute your own stories.

Dear Senator Brown,
I am the mother of a 22 year old lovely but challenged young man with fairly severe autism. I have published several books helping parents who live with autism. But now that Nat is 22 and in the adult system, I see once again that we need so much help just to keep our families together. Autism is so complex.

One of our country’s blessings is our human services. Let’s take Medicaid as an example, because I have firsthand experience with that program.  As you know, here in Massachusetts, Medicaid funds DayHabs for many, including folks like my son. Though far from perfect, these DayHabs give support and therapies during the day for so many adults with developmental disabilities.  Without the DayHabs, which run usually 9-3 M-F, there would be nothing for these people. Nothing. With so many having been educated with our public school system (also far from perfect, but lightyears beyond what the disabled used to have — Nothing) isn’t it a profound waste of human potential to let these people just languish for the rest of their lives, doing nothing and living in their aging parents’ homes — and that’s only the lucky ones who have parents up to the task.  Autism sometimes comes with difficult behaviors (my own son, whom I love with all my heart, just this morning bit his own arm out of frustration with the world…)

I want to invite you to come with me to my son’s DayHab in Wellesley, Autism Services Association. There you will find one of the top-notch DayHabs, and yet you will also observe the shoestring budget they run on. There is no fat to trim. Not with level funding for all these years.

Senator Brown, Medicaid is not the place to experiment with deficit reduction. As unpleasant as it is, we all know that revenue to pay to run this country comes from taxes. Please look to the wealthiest in this country first, before looking at the poorest and most vulnerable. Medicaid helps the most vulnerable. Come with me and see for yourself. I will make time in my very full schedule if you will in yours. Please come; lunch is on me! –Susan Senator, [my address and phone number]

For a lot of today I was walking around feeling a little like my skin hurt–that’s how bad I felt about Nat’s situation. I called my Mom after I dropped him off this morning and I was barely coherent. I could not figure out why I felt so bad, and I was pausing a lot while talking to her. I know she was getting pretty worried.

So what was it that had set me off? I think it had something to do with our arrival this morning. We were waiting outside the building because we were early. Two clients, a young man and a young woman got out of a van and were so excited to see me. They had that look that many have in Nat’s circles: stained buck teeth, pimples, fat. But their faces lit up when they saw me — and they didn’t even know who I was. They asked who I was; they shook my hand. The young woman kept saying it was time to go in, but the staff person did not want her to come early. But he did let Nat and me in, which was odd. I told myself not to read into it. I went around smiling and shaking hands with clients and staff, and tried to remember names. I wanted to ask question after question: what does Nat do during the day? Are there forks and salt or does he have to bring it? What is he like there? Do people understand him?

I got some answers but I felt so many more questions filling me up, but it was too much and so nothing valuable came out. I kept hearing my thoughts:  this is so familiar, so familiar. Same phlegmy and raw stuff in my throat, dry pain behind my eyes, making my forehead wrinkle. It’s that deja vu of leaving Nat somewhere kind of drab; kind of ugly, leaving with a cloud of uncertainty. The thought Institution sucking out my soul like a Dementor. Like The House at school, like school itself. When back then what I thought I wanted was for him to just be with me, my boy in a bubble.

I think what I wanted, and what I’ve wanted all along was to fix Nat’s life. I see myself as a powerful, capable, bright person. Time and energy on my side, a beautiful husband at my side. Why can’t I create something better than this?

So those thoughts were taking bites out of my insides most of the day. Sometimes while I was riding they cleared away and I healed a little. The Beethoven helped. And the sweet, sweet creamy coffee. I also made myself grade a lot of papers, to make me feel like a Woman With A Purpose, rather than just a watery blob.

I dropped Ben at an appointment and sat in my car with more papers to grade but I didn’t. I cried a lot, so much that my tissues disintegrated. I let it evaporate and went to get Ben, grateful for the dark in the car so he wouldn’t see. In the house, I lay on the couch like a sloth and talked to Ned about what dinner should be. I’m not sure when it was in the conversation but at some point he said, “You know, Sue, that room they’re in? The whole thing; it’s a lot like social group, you know, at the Eliot Center? A lot of guys running around, a kind of dingy old room, some are chatting, Nat’s walking all over the place, and they’re maybe painting pumpkins. This is at least as good as that.”

Social group! Yes. Oh my God, yes.

Sometimes you’re just looking at something and not seeing it at all, like those optical illusion paintings, where first you see the vase in the center and then you look again and you see the two profiles on either side of it. Once you see that you can never not see it again. Here I’ve been telling Nat that DayProgram is work.  Or that it’s like school, kind of.  He tried calling it New School once, but that didn’t stick. That wasn’t it, and both he and I knew it. The thing is, it’s not school. It is much more like social group which we all know is Nat’s absolute favorite place to be.

With that new paradigm in place, I found the energy to get off the couch and start pulling out leftovers and salad.

Today didn’t go so well. Or maybe it did, depending on your perspective. My perspective right now is dark mud, so there you go. I am remembering my feelings of being under siege with Nat in my house, and I feel a wisp of that stinging me today. Not only that, there is also a profound sorrow that is pulling me down, despite telling myself to stop it already; despite knowing that we are the lucky ones.

My sorrow is the oldest kind, that of a mother whose child is disabled and limited. As I write this, my sorrow deepens and I even feel a little pinprick of fear/shame because I know that I am betraying people:  Nat, because I just said that bad thing; those who look to me for guidance, who thank me for forging a path where there is none, who learn from me. I’m betraying all of you because I feel these terrible things. I find myself wishing he didn’t live at home still. I find myself wishing he wasn’t autistic. I find myself terrified of his future, that here we are, here it is, and that in itself is scary.

As he walked into the DayHab today for his first day, I could feel his anxiety, his excitement, perhaps, his being at loose ends. He didn’t know what to do, where to sit. We were early, so they were not quite ready for him. He stood there, gangly in his down coat, like a big bumpy blue lollipop — it was already too warm for that — and carrying his school backpack that only had lunch in it. A lunch he’d made. I feel so proud of that and yet so sad, too, about every little thing…making lunch while supervised by his mom, at 22; not having the right coat on; feeling awkward and new and not knowing how to say that. Someone called his name:  “Nathaniel,” and he shouted, “Nathaniel!” As ready as a soldier, and perhaps just as nervous.

Or is that me?

Walking back to my car, feeling those stupid tears, wanting to talk to someone, opting first to talk to myself.  Is it okay? Seemed a little loose and unstructured… Better call Ned. Ned doesn’t pick up. Call my other friend/my guru, get his perspective. I felt better when we switched over to some State House gossip, the stuff that lights our fires.

Did a little food shopping and I carried an almost painful lump from my throat down to my upper belly. Caught sight of myself in the closed-circuit TVs in the aisles and saw a black and white me, bony-faced and serious.  I wanted a Starbux, but I had ice cream in the car so I went home. Way too hot even for my little jacket. And there’s no way that Nat will leave his coat behind when he goes out to the worksite. Zipped all the way up, too. Will someone notice and suggest he leave it? Probably not. This is the real world now, people can’t expect to give too much of a shit, even good people.

If I sit for a moment — which I hate — and identify the source of the pain, like a stupid masochist, I find that it is, of course, the same old tired, boring wound: that I don’t know what this new situation is like for Nat and I fear that he is unhappy. Also: that I can fix nothing, that he really is disabled. And that this is forever for him.

Ned picks up this time, “No, it is not forever,” he says.

“You don’t feel sad?” I ask him.

“No, I think he was happy there when he visited with his teachers last week. I think he’ll adjust.”

Why am I always the head case, and he’s the brave and reassuring one? This is the old pattern from the earliest diagnosis days. I feel alone even though Ned is so much with me, on my side. I find myself thinking, Am I going to have to go through another 6-month period of grieving, just like when he was three, just like when he moved out at 17? I don’t want to go through that. I don’t want to keep feeling this way. But it is back, and I have to go through it.

This was forwarded to me by a friend:

People with intellectual disabilities and autism, and their families.  We need your help.

Representative Dan Winslow is presenting a bill to the Senate November 15 at the State House, Room B2, at  10:30am.  This is a hearing for the bill, open to the public!

Following is an exerpt from an article written Fred Misilo, Jr. Attorney, of Fletcher Tilton, Attorneys at Law, who participated in a film that recently aired titled “Coming of Age”.  The film discusses the issues faced by parents of autistic children who have turned 22.

“… this documentary highlighted, in part, the irrationality and harshness of the DDS eligibility regulations. As most readers know, DDS uses a rigid bright line IQ cut off of 70 or below in making eligibility determinations. This regulatory practice is not consistent with nationally recognized professional standards. After becoming informed on this issue, Representative Dan Winslow filed a bill (H3527) entitled: An Act to Adopt a Definition of Intellectual Disability Consistent with the American Association of Intellectual and Developmental Disabilities.

A hearing on this bill is currently scheduled for November 15th, at 10:30 AM in Room B2 of the Statehouse. This bill would require DDS to adopt the AAIDD definition of intellectual disability. Since its inception in 1876, AAIDD has led the field of intellectual disability in understanding, defining, and classifying the construct that is currently referred to as intellectual disability. It has been my observation along with many others with whom I’ve spoken that the current DDS regulatory definition has had one sole purpose – to unduly restrict access to DDS adult service eligibility of individuals who meet the AAIDD definition of intellectual disability. Parenthetically, this shouldn’t be controversial. Massachusetts DDS formerly utilized this definition until it unwisely chose its current irrational, rigid and exclusionary definition. My hope is that Massachusetts will return to a social policy that embraces the best national practices in the intellectual disability field instead of running from them. Adopting H3527 will reflect a return to a rational eligibility policy based on the real needs of individuals and not on bureaucratically driven fiscal concerns.”

If you cannot attend the hearing, call your state senator and representative and ask them to support H3527. We must make changes to the current eligibility practices at the Department of Developmental Services (DDS)!

On Friday at Nat’s graduation, the biggest theme I heard from the speakers was about his work ethic. Nat’s very first day at Papa Gino’s was highly structured and a long time in preparation. His teachers feared that he would be anxious and they set the bar low. But Nat proved his own desire to be productive, and he completed his job in record time. The rest is history. Anyone who’s been reading this blog knows how Nat loves his work–any job he’s ever been given. Nat now has a resume with at least six different job experiences, all positive, as well as documentation of his ability to work several hours in a row with very few breaks.

But when we first were asked at an IEP to start thinking of vocational training for Nat, we were so sad. It seemed to us that we had reached a crossroads, where we had to put Nat into a slot of “vocational kid” rather than “academic kid.” Work rather than college. Another door closing. Lesser rather than better. Disabled for life. Blah.

This was undoubtedly a difficult time for us, as this article I wrote illustrates. But now, 8 years later, I feel differently about the issue of voc ed. This shift took a while, of course, as does every new turn in the autism path. The terrain changes, the forks surprise us, we get tired and can hardly ever rest.  But eventually we could see that as usual the relief came to us from Nat. Nat loved working, much more than any of his school work, and work changed him. With his jobs, Nat grew into a confident young man, because his tasks were clear and complications were few. Just as Nat went in for sports rather than the arts or music or books, he turned out to be a working man. Leave the academics and the indoor life to my other two sons: Nat is a man of action, rather than contemplation.

Parents need to know that it is okay to see their autistic children as a type of person. It gives us comfort and even pleasure to view our disabled children with the same lens as our other kids. It provides a much-needed sense of normalcy to the family. Just like your kid who built towers as a toddler, and you said proudly, “he’s going to be an architect,” your autistic kid did things as a toddler, too. Maybe he was fascinated with fans whirring. It could be that later in life he will be interested in repetition and machinery. Maybe he will become a guy who assembles stuff. You can then connect his job later in life to his hobbies early in life.  Rather than seeing him as a kid who would walk in circles meaninglessly, maybe as a 21 year-old he becomes an active man who delivers coupons for a restaurant and covers great distances happily. Maybe the kid who obsessively lines up toys later in life puts things away, stocks shelves, returns library books to their proper places, folds laundry…

Parents also gotta stop being snobs. Working with ones hands is time-honored and respectable, just as exercise–simply running or biking or walking just for the sake of it, going nowhere on a treadmill–is simple and yet so important. Not every person goes to grad school or even college. But there is likely a job that every person can do. We have to look upon our children for who they are and what they like and not see it as a deficit, but as a mark of their personhood. We have to get out of our 21st century tunnels and see that there is earth beneath our feet that needs to become paths, farms, roads, or preserved park land. Things that we grab hold of, and these things must be made by someone. We need the guy who cleans without stopping, who assembles parts seamlessly, who delivers without complaint, who works without needlessly gossiping with colleagues, without fake sick days. Our guys are not social enough to lie or slack off.

Work ethic is not to be taken likely. Who is happier:  the guy assembling boxes at Papa Gino’s with blissful contentment, or the top executive who has ulcers and never sees his family?

Take a look at this study from the University of Wisconsin, which concludes that those autistic and intellectually disabled students who have jobs as teens are far more likely to work as adults. And then you decide if taking the vocational path is a loss or your child’s good fortune.

My town’s special education director of out-of-district-placements sent me a new online guide to Transition in Massachusetts, put together by the Disability Law Council, Massachusetts Advocates for Children, the Federation for Children with Special Needs, and Northeastern University School of Law.

A Transition Services Online Manual:

(October 2011)

• Basic Legal Rights    • Forms    • Resources    • Video

This Manual is written for parents and students who are advocating for
better transition services, including social, vocational and independent
living skills.  It is written in an easy-to-understand format but also
contains “Endnotes” and an Appendix at the end of the Manual with legal
information for attorneys and experienced advocates.

The Manual was edited by the Disability Law Center (DLC), in partnership
with the Federation for Children with Special Needs, the Institute for
Community Inclusion, and Mass. Advocates for Children.  It was written by
the Northeastern University School of Law Legal Skills in Social Context
program.

Please help spread the word about this Manual by forwarding this
information to your contacts and networks!

DLC will be updating and improving the Manual on a regular basis.  We plan
to include more videos of students, parents and advocates, in English, ASL
and Spanish, as well as updates on legal developments, new forms, and
other practical advice.