Susan Senator

They’re extra-ordinary so better be wary
Because they come in every shape and size
–Winnie-the-Pooh

No one else is awake.  I woke up full of energy and ideas.  Time to sink my teeth into a juicy blogpost.  Not sure exactly what is there, but I have an image troubling me, of a friend, a new one, and the newness of the diagnosis.  Those raw days where you bleed at a moment’s notice, like an emotional hemophiliac.  What is it that is at the heart of this vulnerability?  I think that, along with the grief of not having what you had hoped for, is shame.  Shame is one of those lightning rod words; you can’t even say it without feeling it! Ick.

So I’ve been thinking about how shame works.  Shame is so deeply ingrained in us — that feeling of the sucker punch, of a cry in your throat that doesn’t get released.  All eyes on you, seeing the real, defective you. I don’t know the psychology of shame, but I think it purportedly comes from earliest rejection — as in early childhood not-getting-what-you-want/need and feeling worthless.  Shame is a feeling, of course, so it is not something you can just get rid of or reason away.  But, like all feelings, I’m guessing that if you think about it long enough, you’ll at least start to soften it up.

Shame is part of our autism baggage, and by “baggage” I mean the junk that hangs heavy on our child, cluttering our view of him.  Baggage is acquired, accumulated.  Because you know there was a time when you could see your child without anything getting in the way.  When Nat was first diagnosed, I would look at him, I remember looking at him standing in the playground, looking like Christopher Robin — beautiful, composed, dreamy, creamy.  I remember thinking, with the shards of my heart jabbing, slicing: “so — that [Christopher Robin thing] — is not true now?”  I wondered how the diagnosis changed the essence of Nat.  What was going to crumble away — was his beauty and darlingness really a facade?  He had autism, a monstrous thing, so a monster lurked inside.  Beware.

So then he’d do something “autistic.” Toss sand, say something weird.  And I’d look around quickly, like a squirrel.  Who noticed?  What would they think? And there, it was born, shame — that inexorable flesh-eating emotion.  I didn’t even recognize it at the time; the shame merely folded into the whole bad feeling stew that sloshed around inside of me all the time back then.  But it made me want to hide, go back to my sandy burrow away from all those eyes.

But then I’d get home and it was still there:  the feeling that something was wrong, that something bad was happening, was still there.  Nat, me.  Something broken, ugly, dark, dead.

Until, some moment later, it would be gone.  I would look at Nat and see just him again, and I would know that whatever it was, it was not him.  It was not actually the autism, either.  It was what I thought, what they thought, it was the evil maelstrom of thought swirling around Nat.  But he was still there, my little Christopher Robin.

Just finished an hour-long radio show in ijpr.org (Jefferson Public Radio).  I find that when I’m talking on the air, I swing into manic mode.  My voice gets tight, as if there is not enough air for me to talk, breathe, and think at the same time.  There is a lot I want to get said, and I never know how long the host will let me talk.  So I talk fast.  I try to slow down and I’m almost gulping for air.  There is no slowing down.  I am thinking on my feet, walking from room to room with the phone pressed to my ear, waiting for the next question, wondering what it will be.  This time, I was also waiting for the bus to bring Nat home, halfway through the interview.

I was stressed but not incapacitated.  There was one question where I forgot what I was saying, because I was thinking about Nat sitting down in the dining room to eat his snack.  I could hear him humming and smacking his lips, crunching at the chips and scooping out the salsa in big red lumps.  A blizzard of crumbs swirl around him.

I was zooming around, not paying attention to much except the man’s voice in my ear and Nat in the other room.  I was trying to block out all else.  I was struggling to listen to what was being said to me.  I wanted to give the person what he wanted, and also give Nat all the care he wanted the moment he first comes home.  The endless walking in circles helped calm me and focus me.  My words came out faster than I would have liked, because of my high degree of stress and effort.   I was actually functioning almost in an autistic manner while talking about how autism parents function and try to live good lives in the context of great challenge and devastating love.

I think that this is the way I lived so much of my life when Nat lived at home:  thinking fast, trying to solve problems put to me, trying to be articulate to those talking to me, keeping more than one eye out for Nat and what he was up to, what he needed.  Stressed but not incapacitated.  But maybe not always at the best of my four cylinders.  Trying to do something for me (usually that meant just living that moment) while of course trying to do whatever Nat needed.

How do we live our lives well when we are living our lives so jammed up?  We talk, we do, we try to think, we try to love.  We breathe but sometimes even that is hard.  I think we just do it, endlessly, and that we are doing it well though it may not seem it, because that is what living is.  Otherwise, it is just kind of a nap.

Today I’ll be on the air, live, at noon EST and 9am PST, on www.jpr.org.  This is an NPR affiliate, Jefferson Public Radio, operating out of Mendocino, CA and Eugene, OR.  The interesting thing here is that I forgot that Nat has an early dismissal today, and so he will be arriving home right in the middle of the phone interview!  His bus driver often walks him to the door and knocks, and waves good-bye to me after handing Nat over; Nat’s teacher calls at 12:30 to give me the weekly update.  Nat comes in, unpacks his stuff upstairs, zooms downstairs looking to eat, stomping loudly…  I stop him, hug him, ask how he is… I am going to tell the radio host beforehand what’s going on.  It is “Autism Mom’s Survival Guide” in action, I guess!

I’ve had no blog since stupid Blogger bailed on everyone.  So Ned and Max transferred this thing with its 1300+ entries over the course of several days and I’ve become choked with posts that could go nowhere.  Here is the first one to come bubbling up:

Ned and I took a walk with Nat into the Village this afternoon, more to see how he seemed than to get anything.  But Starbux is always a lure for me, especially when I have a long day ahead (I’m traveling for the book tour.  I had cut some of it short to come back home and be with Natty.  Now I’m headed back to Connecticut and then onto New Jersey.).  So we headed there; it’s only like a half-mile from home.

Nat eagerly accepted the invitation to go, which is a good sign.  Lately, while he’s been home suffering from the shingles, he has not been himself.  He has been answering a very elongated “ye-es” to most questions, and hardcore “NO,” to others.  There has been very little that has elicited the psyched-Natty “YES!” complete with the jump-up and the scramble for shoes.  I miss that.

But Nat loped ahead of us in his usual style and I felt very good walking next to Ned in the humid air.  It was so steamy and sunny, in fact, that for the first time you could smell the blossoms of the trees.  There will be a waft of sugary air and then I turn immediately to identify the source, which is kind of impossible when every tree around me is fluffy white or pink.  Ah, such a good problem.

We got down the hill and crossed over by the Post Office.  The blocks are pretty contiguous at this point, but there is one small alley-like street that actually has a crosswalk and light.  Nat was ten feet ahead of us, as usual.  I watched him get to the curb and I saw him pull himself back and wait, even though the walk light was on.  Then I noticed a car that had barreled right up to the crosswalk.  Nat had noticed it too, and so he had not crossed, even the light was on.

I think this means that Nat now understands the gray areas of walking in the streets:  that you have to watch for cars and you cannot simply rely on drivers to obey the lights.  It happened.  It really did.  Now the goal of letting him walk alone in the neighborhood is visible, just beyond another block.  More independence has bloomed inside that incredible brain of his.  I breathed in that knowledge, enjoying it like a fresh breeze of apple blossom.

Took Nat around the pond on bikes this morning. This is about a 2-mile loop. We start with a long downhill that ends on an extremely busy street, so I have to look back at that point to be sure he is aware and braking. Once we can cross that, we are pretty much homefree for fifteen minutes.

I usually take the lead, and I glance back every so often at Nat, who is remarkably slow on his bike. He used to be very fast, but I think he now understands about how being slow gives him more control, which you need to have in a crowded city park.

I love going at around 7:30 am, though, because there are so few people there– only dog-walkers, runners, and other bikers, spaced apart very conveniently for the nervous mother rider. Nat is afraid of dogs, but he now knows to give them a wide berth, and remain calm.

As I get to the first (slight) hill, there is a nice view of the wide pond. Today we heard a goose going nuts and I pointed it out to Nat. I never know what level of conversation is exactly right for Nat. I don’t want to baby him and say, “Nat, what does a goose say?” But I would ask him that if I thought it interested him — if I thought that were his level. I don’t want to miss out on any chance of interacting, so I take the high road and I say, “Nat did you hear that goose?” I’m going to assume that he already knows all about animal sounds and that we should just focus on regular conversation.

Pushing hard on my pedals I feel the first burn in my calves and thighs. I still wonder how it is that a previously uncomfortable feeling is now one that I crave. My mind is telling me, “this is hard work!” but my body is saying, “Mmmmm, that’s an all-encompassing feeling.” No judgments.

Nat does not shift gears. I gave up on trying to teach him that one. I always set his bike to second range, 5th gear. I always ride in third range, 6th gear (the almost-hardest setting). Nothing fazes him. He goes up a hill and I can see that his body is pushing harder against his bike, but he is still smiling and chatting to himself. It sometimes sounds like he is shouting, “Hi!” That would be cool.

First really good downhill takes you close by the pond and I get a rush of good feeling, ala Beethoven’s 6th, First movement. I speak aloud, to God, and I say thanks again for this, that I get to ride my bike with Nat. I am grateful again and again that I can do this, and that every year it gets easier and easier — for my muscles and for my son.

Here are some excerpts from the Exceptional Parent Magazine review of my book. I am thrilled to receive such praise from that venerable magazine, which gave me my start as a journalist back in 1997. Go get a copy (of my book and EP!) and after you read it, tell me what you think; I am already brewing the next book.

“So many new autism-related books are on the market that it’s impossible to review them all; which made pinpointing this month’s selections a bit difficult. After careful consideration, we chose these two—one for parents, one for kids—for their genuineness, readability and unique insights.”

“This book is undoubtedly one of the best I’ve read on raising a child with autism. The author has an authentic way of inviting the reader to look at all sides of an issue and gain a broader perspective of what it means to live in a family affected by autism, without ever sounding too clinical, preachy or victimized. Senator’s believable writing style, personal experience and ability to blend the different viewpoints of other parents makes The Autism Mom’s Survival Guide as real as it gets.”

“Senator does a terrific job of helping parents move from feelings of helplessness and shame to greater detachment and a sense that they are doing the best they can, and that that is enough.”

“The section on coping with judgment and criticism is particularly helpful.”

“Another great chapter offers ideas about how to have fun with your child—not just keep him occupied—something that is often overlooked in how-to books of this nature. Senator also shares some wonderful advice about taking care of yourself, finding innovative ways to improve your love life (yes, that’s important, too!), and move beyond the “you and me against the world” mentality that can stifle a parent’s desire to venture among “regular” parents and kids.”

I’m realizing that when you are a parent, you not only have to live your own life, but you kind of feel like you have to live your child’s life, too. When Nat was a little guy, and all throughout his school years, I was never satisfied with the communication from teachers. It seemed that in the communication notebooks, I always read, “Great day,” or “Did all of his work.” Sometimes, during the more difficult phases (February and November, when he would become unhappiest and aggressive — can you blame him? They are the barfiest months of the year.) I would get “No issues.”

I often devised little check-off sheets for the teachers, that took stock in what I wanted to know, such as, “who did Nat play with or talk to?” and “what book did Nat look at?” It was more work for the teachers to have to answer these questions daily, but I needed to know these things because Nat could not tell me himself. This little aid gave me a little more of what I was seeking, to be a fly on the wall of Nat’s school life, and I have to say that every single teacher not only used my little sheets, they were happy to. (To this day, I truly believe that people go into the service professions, like teaching, because they care about making a difference. That has been my experience, by and large, with 17 years of Nat in schools).

And still, it was not enough. There was just more, more, more I wanted to know, but what, I can’t say. That inarticulable longing, the yearning of a lot of autism parents is as strong, or stronger, than any other emotion they’re dealing with, I would bet.

One of the rare times that I was not happy with a school’s treatment of Nat was when he was around six. (and I am not including in this recounting that terrible horrible year when he was ten, and expelled from a school program. That one, that “special education collaborative” does not even count as a school program. That one is off the charts terrible and as my grandma would have said: “a curse on all their heads.” I fart in their general direction. I salt their earth. Unfortunately most special needs parents have one of those wedged into their memories like an evil splinter. No, I am talking about all the other normal, hard-working, lovely staff we have ever worked with at all of Nat’s other school programs.) But when Nat was around six, he developed his “silly talk,” or self-talk, and it completely freaked me out. What was this? I wondered. What were we supposed to do about it? Up until then, our only real problem with Nat was that he was utterly disengaged from us, for the most part, and very stimmy. His language had always been odd, developed from passages from books he loved. Charmingly odd. But the self-talk! That was not charming.

The school’s solution was to gently interrupt Nat and “give him something else to say.” This was one of the first times (of many) where suddenly the weight of Nat’s entire future crashed down onto my shoulders. Not like when they are babies and you know you are the one keeping them alive, basically. I mean that the message I got from the school was: if you don’t keep this up, he will be more autistic. One teacher even said to me, “however much more you can do for him now, he will be that much more capable later on. It’s your choice.” Or something like that. The way I heard this was that if I were to employ — around the clock — the techniques I had learned from the school, it would make Nat de-auticize (NancyBea’s fantastically apt term). I was now to think of things for Nat to say — and constantly, because he was doing his self-talk constantly — as well as things I wanted to say.

So here’s the formula: 1 autistic Natty + 1 mother (living her life+Natty’s) = 1 cured Natty.

But I am terrible at math. Over the years there would be many other such messages I would get, and I pretty much did them all, half-assed, tiredly, sadly. If I only had tried the diet a little longer, a little better. If I had only gotten him in the queue for Secretin. If I had driven that hour each way for the Auditory Integrated Therapy. If I had tried, just tried that drumming thing. If I had kept up the SI therapy. (If I had found a way to prevent him from attacking his therapists, he would have kept that one up.) If I had sat with him every single time another kid was around and facilitated appropriate play. If I had pushed the Floortime.

Instead, I worked tirelessly on finding him the very best teachers, on creating the most effective, comprehensive IEPs, on hiring tutors to work with him one-on-one in our home (based on Temple Grandin’s mother’s approach) so as to have someone in-his-face as much as possible, on finding him speech therapists who didn’t mind getting hit, on finding him the best medication combinations, the lowest dosages, that would mitigate aggression and relieve anxiety and stimulate speech. On taking him to this activity and that, trying every sport, every music therapist, blah blah blah.

And, in direct contrast to the Passover song, it would never have been enough. Sometimes I have experienced autism parenting as the Anti-Dayenu.

It would never have been enough, if my goal was to completely flatten all of the autism out of Nat. And once I realized that this was not my goal, I could relax a little and just plain enjoy my boy. That’s what I’ve been doing for the last seven years. I enjoy the check-ins with teachers and House staff, I learn whatever I can about his day, his week. But I will never know what goes on inside Nat’s head or in Nat’s school day as completely and thoroughly as I long to know because it is just not possible to live someone else’s life for them.

I’ll be interviewed by Voice of America tomorrow at 9am EST. Other interviews are listed on my radio events page.

Here is my Passover album on Facebook — I hope this link works. It was an exhausting but wonderful night. I made a brisket. Mom brought matzoh ball soup, tsimmes (a sweet potato and carrot mixture), the seder plate contents (roasted lamb shank bone, horseradish root, parsley, roasted egg), and cranberry sauce. Laura brought delicious (non-Manischewitz) wine. Dad presided over the seder service. All the kids participated. And Nat said most of the prayers at our seder — he even paused when he got to “shel Shabbat,” which means “the lights of Sabbath.” I prompted him: “Passover,” and then he said, “shel Passover.” He also read passages (in English) from our Hagaddah (the story of Passover that you read from at the seder table). He corrected himself when he got the word wrong, like when he read, “spirit,” as “sprite.”

Apparently the President has put on hold the nomination of Autism Advocate Extraordinaire Ari Ne’eman to the Disability Council. There has been a great deal of negative feedback to the President for his pick of Ari. You can read more about the issue here. There is no question in my mind, however, that Ari deserves the post because he is a tremendously powerful, persuasive, and articulate spokesperson for high-functioning autism.

The problem with the pick is that autism is such a broad spectrum and those most affected by it are also extremely diverse to the point of terrible antagonism in the autism community. The cracks that run in the autism community landscape are broadening to the earthquake level. Autism-Vaccine-Connectors vs. Autism-is-Genetic-and-not-an-environmental-injury is only one such divide. We also have autistics themselves vs. parents. We have behavioral-therapy-practitioners and we have relational-therapy-practitioners; we also have biomedical-interventionists and traditional-medication interventionists. And I am mostly speaking of the case of autism parents, not of those with autism themselves.

We also have the majority of the parents who are a bit of all of the above. We try many many things to help our kids perform at their best potential. That is a parent’s job — along with loving and accepting our children for who they are. I don’t need to lecture any of you on this.

It is this broad and colorful reality of the autism experience that calls for a more diplomatic choice than Ari, or for a co-representation. My thinking is that Ari represents many autistics themselves, the high-functioning in particular; so then we also need a parent (parents are arguably just as affected by autism as autistics themselves, particularly the more involved children with autism). We need diplomatic people on this council who will listen and truly represent and understand all of the plate tectonics of the many autism continents. If we are talking about autism policies and programs and the spending of money, we are talking about a serious chunk of change and energy. We therefore need the broadest and least inflammatory representation possible. I think Ari + a parent of a fairly severely autistic child would be the best representation for such a split community.

Last night, Nat was really on.

Lately, it seems that he really wants to talk to us on the phone. Here’s the latest conversation:
[phone rings]. I pick up (once I’m sure it is the House calling and no one else. I don’t like to talk on the phone, unlike Nat).

S: Hello?
N: Hi
S: Hi, Nat!
N: How you
S: I’m good, how are you?
N: Good.
S: So what’s the weather like there?
N: [pause]…sunny…
S: And who did you work with at [the House]?
N: Evans.
S: Good! And did you do any exercise?
N: Treadmill.
S: That’s really good.
N: Yes.
S: Nat, did you go to work lately?
N: Yes.
S: Where do you work?
N: Papa Gino’s!
S: What do you do at work?
N: You walk…you…put coupons.
S: Wow! So where do you put the coupons?
N: Door.
S: That’s great, Sweetheart.
N: Yes.
S: Okay, well, I’m going to hang up now. I will see you tomorrow, and you know you are going out to dinner with your social group, your friends. And then the next day is the Harlem Globetrotters. And Laura, Kim and Paul will be here. And Grandma and Grandpa. We are having our Passover Seder!
N: YES
S: Okay, bye Darling
N: Good-bye
S: Bye, I love you
N: Bye.
[they hang up]

This is a boy who could not answer “yes” or “no” when he was 4, 5, 6 — this is nothing short of a miracle. How did it happen, you wonder. I do, too. But it was just long, hard work on his part and his teachers, and growth. No magic pill, no secret anything. He’s got a disability. I respect that.

I guess he really started being able to converse at 9 or 10. Slowly. Oddly, like a person learning a new language. He swallows some letters. This may be because, as Temple Grandin says, this is how he actually hears words most of the time: some consonants are dropped. (!)

And gradually, with practice, he has strengthened his ability to think on his feet and answer questions. It’s like Temple Grandin also said, you have to give a long enough response time so that he can process every word, every letter. And what I also do is to add in words that are cues, that are bridges to his finding the answers. So I repeat the word, “work.” And “coupons.” If my question is about the weather, I emphasize “WHAT..” and “WEATHER” so that those are the words he really hears.

It seems to be working.

Here is my BlogHer interview with Blogger and Autism Mom Shannon des Roches Rosa! Enjoy!
(and Happy Birthday Ben and Laura)!!!!

My book, the Autism Mom’s Survival Guide: Creating a Balanced and Happy Life While Raising a Child With Autism will be out in stores a week from today (or tomorrow).

Chapter 8: Looking Toward the Future

…Jane, a kindred spirit in Milwaukee, is way ahead of me.
Her son, Chris, is thirty-three. “My son has been working
at Barnes and Noble and living in an adult family home
in the community for eleven years,” she wrote me. “I still
suffer from separation anxiety and miss him every day
(even though I do see him every weekend). I can tell you
that I still do not know if this is the course he would have
chosen for himself. He does not verbally indicate whether
he is happy or not (he has limited speech). We judge his
well-being via his behavior.” This has always been our
modus operandi with Nat, who so often cannot or does
not express what is going on inside.

Jane impressed me with her positive attitude and her
ability to meet difficulties head-on, despite the challenges of
being a single mother. “I was divorced when Chris was six or
seven years old,” she told me. “I really felt alone. I just wanted
to take care of my son and daughter. We all moved to Akron,
Ohio, because I had a stepsister there. It was great because we
had family; we had supports.”

The support of her stepsister enabled Jane to go back to
school and earn a degree that would help her get a good job.
After she finished her education, the three of them moved
back to Milwaukee and lived with Jane’s parents while Jane
looked for a job. Jane feels she was so lucky to have been
able to do that, as opposed to feeling discouraged about
moving in with her parents. “Those were the happiest days
of Chris’s life,” Jane said. Even now, twenty-six years later, he
points in the direction of her parents’ old house when they
pass their old neighborhood. It is Jane’s dream to buy her
parents’ former home so that Chris can live in it again.

Jane’s strong sense of what is important and her ability to
stick with that has convinced her that advocacy is the key to an
autism family’s happiness: advocacy for the child and for the
parent. “I want more for him,” she said simply. “I want to build
a better world for him while he’s alive.” Doing that is a tall
order, but Jane has learned that facing the obstacles that come
up gives her such a feeling of accomplishment. “You have to
stay on top of all the tasks related to supporting Chris as an
adult in the world. It never ends. But it’s the challenge of it
all that interests me,” she said. “If you’re negative, all the work
you’ve accomplished will cave in. It is just that simple. Chris
can sense my attitude. It affects him in so many ways.” And
being negative will affect you, the parent, as well.

Jane also discovered the value of finding trustworthy
people who understand her child. One such person helped
Jane’s son Chris to get the job he has had for eleven years at
Barnes & Noble. “Chris had a job at a public library,” says
Jane. “There was a woman there who knew how to connect
with him. When this woman left the library to work at Barnes
and Nobel herself, she took Chris with her.” Since then, she
has acted as a job coach and sometimes serves as a liaison
between Chris and the customers. But it is Chris’s ability to
internalize the layout of the bookstore that has made him
the cherished employee he is today. “He knows just about
where every book is in the store,” says Jane. “He helps customers.
He walks them to where their book is.”

Ned and I went into a Newbury Comics store today and were browsing the buttons, figuring we’d buy a few funny ones for Benj for his birthday. We were laughing at the button that said, “Ask me about my explosive diarrhea.” But as my eyes scanned the long rows of the ironic, witty, silly, I saw a button that said, “I’m retarded.”

“Ohhh,” I said to Ned, pointing at it like it was glowing with radiation. I started to pick at it, thinking I would remove it, throw it on the floor. Ned said, “Sue, you can’t do that.”
“But they shouldn’t have that,” I said.
“You can’t vandalize, though.”
I sighed. I looked regretfully at the other buttons; the fun was over.
“They shouldn’t have that,” I said a little louder, suddenly realizing I wanted the guy behind the counter to hear me. I said it again and he looked at me. I was quivering for a fight, all of a sudden.
“You don’t have to — uh, buy it–” he said. It was the argument everyone makes: you don’t like what I wrote, don’t read it. You don’t like what’s on t.v.? Don’t watch!

It was a legitimate argument. It is the anti-censorship argument. First Amendment and all that. The breath and blood of a free country. Yes, I agree, I don’t have to buy it, read it, or watch it. You start taking away that right and you are on a slippery slope.

There’s the law — and then, there’s just plain humane behavior. Newbury Comics doesn’t have to sell that particular button. They can make the choice to have one fewer button on that stand– there were so many, nobody would have missed it.

We have so many other words in this language of ours. We came up with better words — and concepts — for blacks, for Jews, for so many. There are so many ways to say something. And no one is telling the Newbury Comics dudes that they can NOT sell those buttons anymore. But Newbury Comics can decide that it’s just not all that funny anymore.

I was shaking with anger as I headed for the door. I saw a guy that appeared to be the manager, and I tried talking to him. “You know, you shouldn’t have that ‘I’m Retarded’ button for sale over there. It’s not a good word.” I wasn’t sure what to say. There are a lot of words out there but sometimes my mouth can’t find them.

But he got it. He looked at me, and said, “Hmmm. Well, I’ll be happy to bring it up with my supervisor.”

I gave him my best smile. “Thanks!” I said. “That’s great!” And I left. One down, 299 billion to go.

Each one of them made their appearance to me like the stork-brought babies in Dumbo.
The unfolding of the blanket — I could not swaddle them; the edges fell away limp and loose. It was like I just couldn’t put them away, even for a moment. So Ned did it for me.

Looking at their faces for hours, trying to figure it out. Who are you? I asked Max, laughing at his square-ball head and tiny pointy nose. Where did you come from? I talked to Nat, my lips never far from his head, my nose from his skin, like he was my food, my air.

But you — if ever there was a Changeling, you would be it. Dark, moody. Always thinking.
The worlds you draw. The words you write. Piercingly grim, achingly hopeful. Every nuance carefully shaded, intentionally subtle. All is there for a reason, everything purposeful. Angles I would never consider. Stories that make me shiver — with joy, with sadness.

And yet that is also us. Sometimes it is harder to see what is closest.

I write this because it is four days until you slipped into the world, my little B-nut, a third gift from God.

Chapter 7: Letting Go: When Our Kids Leave Home

It is as if, by leaving home, Nat has been propelled to
another level where perhaps he now feels the need to communicate
with me in a way I will understand. I believe that
he needs, more than ever, to connect and he seems to be
aware of that.

Nat is always a surprise, sometimes because he shows me
that he is just a teenage kid, and not a Disabled Teenager.
This was clear when, another time, I heard him saying, “Peeiss”
and giggling. Could it be . . . ? Yes. Nat was laughing at
body parts, just like so many kids do!

Thus I realized that the words at the end of Nat’s seemingly
senseless phrases were full of meaning. This small
glimpse into Nat’s mind felt as good to me as any conversation
a mother could have with her teenage son.

It is often difficult for me to remember that Nat’s own
particular development and progress is actually OK. I guess
I am scarred in some way since his babyhood, when nothing
went as planned. But sometimes his phases parallel Max’s so
strongly that I get a kind of flash of understanding: They are
both teenagers, after all, and they are both leaving the nest,
one way or another.

One night during the summer Nat left home, I got a call
at eleven p.m. from Max, who had gone off to Vermont for a
week with his girlfriend’s family. I had put him on a Greyhound
bus Monday morning, reaching up to hug his hard,
broad shoulders and to kiss his impassive face. It smarted
just a bit to let him go, and to see how eager he was for me to
leave the bus terminal.

I asked Max to call me when he arrived, but he forgot
until late in the evening. He was a little sheepish on the phone
at first, knowing he had not done what I had asked him to do.
But there was something else that shaped his tone, a roundness, a curl of
happiness that I had never before heard from him on the
phone, or perhaps had not heard it in a long time. What surprised
and touched me even more was the content. He kept
offering information, descriptions. He told me how cows
were “really disgusting, because they lick their noses and so
their faces are always wet with either saliva or snot,” and then
he laughed. He described the beautiful large house he was
staying in, the icy-cold pond, the “crazy stars.”

When I got off the phone, I felt happy, full. I think it was
because for the first time in a long time, Max really wanted to
talk to me. What I realized then was that even though things
were so different for us these days, we were all still connected.
My sixteen-year-old and my eighteen-year-old were both
moving on from here, but neither one had let me go.

We were sitting in the bleachers at the gym at Clark University today, in between basketball games. Nat’s team was in Special Olympics Massachusetts State Games this weekend, and we were waiting for our third and last game.

I felt as if I had just finished a large feast–tired, well-gorged, and satisfied. Although Nat’s team ultimately were 1 and 4, the second game today was magnificent. That was when they hit their stride. Unlike last year, just about every athlete (as opposed to the unified players, who are not cognitively impaired) on Nat’s team played really strong offense. Nat, G, B, S, J, and C all brought the ball down the court several times during the game where one or the other made baskets. Nat scored twice. M did not dribble much, but he has such focus that he seems to be psychokinetic; it is as if his eyes will that ball into the basket. He stands very very still and stares upward, and it seems as if he is moving in slow motion. He brings the ball up and just about every time, he makes a basket.

At Special O you are in the magnificent presence of disability. Special needs, disorder, birth defect, all of those terms that make outsiders shudder: they are in full view, right in your face. You see disability in all of its rawness, and there are moments where this fact, of the glaring, obvious, outwardly distorted and seemingly different are so apparent that your breath catches. And we don’t shudder at all. These are our kids, and their teammates. This is their moment.

It is the flawed moments when Special O is the most interesting. One moment is when a teammate forgets which basket is his and scores for the other team. Another is when someone makes a terrific shot — long after the whistle has been blown. Another is the way the team members hang onto the ball, twisting and turning away from an opponent, traveling down the court with it in their hands; or when they try to slap it away from each other, greedy and nasty. Sometimes an athlete will be pushed down or will trip and fall. I saw one stout angry guy start to hit one of our teammates, in frustration.

We clap and yell when our team makes a basket; but we also clap when the other team makes a basket. We also get pissed off when they make too many.

Another potential pitfall is underestimating an opponent. This is really the parents’ issue. Sitting there in the stands a few of us noticed this extremely short, rotund man, who did not move very fast. But — oh my God could that guy shoot. It started to get to be, “Oh, no here comes that guy!” Same thing at another game: two guys who seemed almost to be twins, short, wide, middle-aged, wearing pale gold shorts; they were a whirlwind.

Sometimes the unifieds get a little aggressive. I don’t think anyone wants to win as badly as they do. The way they jump to seize the ball — Ro is one of them. She flies through the air. She runs like Jackie Joyner-Kersee, her feet smacking the floor like thunder. She will not let the other team have the ball. She gives the other unifieds (the opponents) “the look,” and like Medusa she could turn them to stone. (Although Ro is beautiful.) (Look in the background at #7, my dear Nat, going on Walkabout all of a sudden.)

I thought I’d seen everything. Every moving, sweet, gripping, heart-stopping instance. And then, just before our third and last game was to start, this little woman walks by — bespectacled, slightly shuffling. She couldn’t have been more than four feet tall. She was probably in her thirties. She cradled a Paddington Bear against her cheek. My heart just turned right over. I wanted one, too. That was the Special Olympics moment, the reason we all go. Disability is real there; nothing hidden, and no one ashamed. It is interesting, it is poignant. We see that “they” are all human beings with needs, desires, anger, spitefulness, caginess, and every other human nuance. Paddington Lady and all the others remind us that “they” are “us.”

Last Thursday I went to a conference in Rhode Island held by Community Autism Resources, an advocacy and support organization connected to Dr. Barry Prizant, one of the creators of the SCERTS model of autism education. Temple Grandin was the first speaker. I had heard Temple speak years ago, but having just seen the Clare Danes movie, I was eager to hear her again.

Temple talked a lot about different types/manifestations of autism and how to tackle the various issues associated with them. She spoke in terms of “brain problems,” rather than attempting to use traditional diagnostic terms like dyslexia, ADHD, or even autism. Her point was to make clear the fact that understanding the specific learning style of each brain you meet helps you relate to and educate that particular brain. You can’t get “locked into labels,” she said.

Temple discussed comprehension and learning styles by making three basic categories: those who are visual thinkers; those who are pattern thinkers; and those who are verbal thinkers. Of course there is a lot of migrating in between the groups. Visual thinkers would be “poor at algebra but can do geometry,” Temple said, because of how they think in pictures (the way she does). They might be industrial engineers. Pattern thinkers would be good at music and math, or playing 20 questions; they can’t show their work, either — which made me think of Benj. And Verbal thinkers would have no speech delays. They might become journalists. They are word people; they think words.

Right away I could see something revolutionary here because nearly all Nat’s life I have heard about how “autistics are visual learners,” and it always struck me as a broad generalization and not entirely true when applied to Nat. Nat learned to read by spelling, not by images. I never felt that Nat needed the Meyer-Johnson symbols to understand things; he did so well when I sung things to him or even spelled out loud. Not all the time, of course; some of Nat’s learning is indeed visual but the point here is that people have so many variations in their brains that we do ourselves and our children a disservice by assuming one-size-fits-all. Obvious, but then again, easily forgotten.

Temple talked about how some autistics cannot see and hear at the same time. Their central auditory processing is “messed up.” They have problems discerning detail in sounds. In some cases, hard consonant sounds disappear; the quicker sounds “drop out,” and yet the same person will test perfectly for hearing. “Slow down and enunciate,” Temple advised.

“Then you have the echolalic kid who hears fine if [things are] repeated exactly the same.” You would teach him that words have meaning, using hundreds of flashcards, with the word and the picture. He would need many, many examples of things to understand their meaning and then generalize to their category. But it can be done. “Explain enough–they’ll get it,” she said.

Next Temple described those with “attention-shifting slowness,” whose ability to focus and then refocus is affected tremendously by distractions. Interruptions in conversation may mean utter breakdown in comprehension. “Give them time to process,” she advised.

Further, there are those whose “visual systems are messed up.” Their eye exams would be normal, but images break up. They learn through hearing(!). People who have this problem may see print jiggling on the page, and therefore their reading ability will lag. Temple advised pastel-colored lenses to correct this. They’re available in Target, she said, and she felt that if people don’t try this, something this simple, they’re idiots.

Temple calls ’em as she sees ’em. No mincing of words. Her approach is to identify the brain problem and then find the strategies that will apply. Don’t waste time on changing the world; put your energy into simple corrections and techniques and stay focused on problem-solving. For example: Supermarket fits? Probably sensory — bad lighting. Not always behavioral, but sometimes it is. Find out which it is. If the behavior is not sensory but rather is about attention and pushing people’s limits, then you should not tolerate it–like rudeness at the dinner table. As Temple put it, “Autism is not an excuse for having a fork in your hair.”

Building on her theory that not all autistics have autism in the same way, and that we are talking about individuals with their own particular set of challenges, she brought up the “break it all down into small parts” approach. This is one of the most common forms of instruction for kids on the spectrum. Small steps, small parts. Discrete trials of learning, built one step/layer at a time. Temple blew my mind when she said that actually some folks on the “lower end of the spectrum” do not do well with things broken up like this. With some, you should “use one continuous movement, and it will get through. He must see it all.” She talked about one person she knew whose mom realized this; she had to show him how to get dressed by slowly pulling his shirt on in one connected action, not by doing first arms in sleeves, head in neck hole.

Temple’s basic approach to understanding autism and life is based on common sense, observation, and experience. A mixture of intuition and scientific research. Her overall philosophy seems to be to figure out your kid’s learning strengths and deficits, and work within that configuration. Eventually you will identify learning styles, preferences, and then you can help find hobbies and perhaps one day employment that goes with his particular kind of brain. “Don’t de-geekify the Geek,” she warns. The differences in brains are the sources of our problems and our suffering, but also, of our individuality, our genius and our creativity. After all, “Who do you think made the first stone spear? It was some Asperger off [alone] in a cave…”

The point being that we don’t need to work to change/fix people but rather to help them become the best they can be given their particular issues. Temple’s humble, common-sense approach doesn’t even presume to know how to change/cure. She blows you away with her humane attitudes and by implication, her compassion.

The most wonderful thing about listening to Temple was that even though she is an Aspie, her philosophy and findings are not just applicable to that end of the spectrum. As she spoke, I could apply much of what she was saying to Nat and many of his peers, all up and down that huge spectrum of theirs/ours. Her underlying message is that there is no big mystery here, just a set of problems to identify and solve. Although she did talk alot about therapies, both alternative and traditional, (GFCF diet, sensory integration, medication) and how many are worth trying for one-three months if they are not harmful, she was not focused on a cure, but rather, on how to work with what you’ve got. Something we could all use.

Chapter 6. Moving beyond “You and Me against the World:” Getting Help from Others

…Unfortunately, it’s a common experience for most autism
parents, at one time or another, to feel humiliated by strangers.
Or, if it is not humiliation, then we might experience just
plain lack of understanding. Paulette, who calls herself my
twin sister in Alabama, told me of the challenges she faces
going into public with her daughter Punkin. “Punkin and I
have had some good experiences and some bad experiences.
I really understand other autism parents when they say how
proud they are just to be able to go places and it’s normal.

I am invited to go and see The Nutcracker ballet for Christmas.
I have decided that Punkin will not be going. Everyone
wants to know why I am not taking her when my best
friend is taking her girls. I find myself getting defensive.” Paulette
has a long memory of her experiences out in the world
with Punkin, and it makes her think twice about going any-
where with her, just like I still do with Nat. “This summer,”
she said, “when it was just the two of us and the meltdowns
were happening on a regular basis, I couldn’t get anybody to
help me—but they are still quick to criticize my decision not
to take her to the ballet.”

Paulette continues, “They just don’t know how much I
would love to take her, but this is going to be a trip that I take
just for me. Most of the time when we go places, I say, ‘This
is for Punkin,’ and if I have to spend a little time in the restroom
calming her down, it’s OK because I am doing it for
her. But when we get up because she needs to go somewhere
else to calm down, nobody gets up and says, ‘Do you need
any help?’ Yet they still want to criticize.”

…Probably the most helpful happiness strategy for an autism
parent is finding lifelines. Lifelines are the people in our lives,
outside of our spouses or partners, who truly understand our
children. Lifelines are the people who “get it,” as many autism
parents say. You can leave your kid with a lifeline for a period
of time—an hour, a weekend, it can vary—and you don’t
have to worry about it. These are the folks who let us escape
and rejuvenate. Lifelines help our children, too, because they
provide them with bonding experiences beyond Mom and
Dad and help them to develop more independence…

My Maxie is 18 today. About to hear from colleges, a man with his own life and his own secrets, his own mind. I loved him the moment I saw him. With Max it was easy. He is, knock wood, my easiest child, and special in so many ways. Mostly I love his serenity and kindness. Plus he’s damned gorgeous.

Happy Birthday, my darling young man!!