I was very surprised at how much I enjoyed the afterschool class I teach — little girls’ Middle Eastern dance (aka Baby Bellies). I have not taught BB all year — I got burned out last year — and so I have not been in my stride. Today was the second class. And I was totally dreading it. I looked at the bag of bright colored jingling shmatahs, and I thought, “why did I sign up for this?” I was remembering class at its very worst, when there were about 8 screaming 8 year-olds, running with my veils dragging, and all kinds of school people (kids, teachers, specialists) looking at us to figure out what the heck we were doing. And there I would be, with my hip scarf tied around my jeans and my boots off, trying to teach these girls a few bellydance moves while trying not to perspire too much. Good luck with that, as Jerry Seinfeld would say.
The problem with me is, sometimes I get in my own way by thinking I know what something is going to be like beforehand, and then getting sick of it before it even happens!
To be honest, there are some Fridays where I think, “Argh! I almost forgot, Nat’s coming home for the weekend.” And, please God forgive me, my spirits plummet. I immediately think of how I’m afraid it’s going to be, namely that I will be trapped in the house a lot unless I want to take him out with me. So I make the mistake of feeling like I know what it’s going to be like (living with Nat the way it is at its worst) before the guy even steps off the bus.
There were so many times in his younger life when Nat was so difficult my life felt like a prison. I am so sorry to say that, and I’ve said it before for sure, but it is the truth and that is that. It makes me sad to think that I have felt this way about my son, whom I love probably more than I love myself. But loving someone and living easily with someone are two different things. There was the bloody wrestling to the ground outside of the Stop & Shop. There was the horrible struggle in the subway, holding onto Baby Benji while fending off Nat. There was the clawing of Max’s hand at the Bertucci’s. The screaming, screaming, screaming. The inexplicable screaming at the end of George of the Jungle (probably warranted, when you think about it). The attack while I was driving. The pouring of water in the handbag, the pushing over of little kids at the playground. These things die hard in the memory. It is very unfair to him. That stuff, after all, is the disability. Or, more accurately, the co-morbid conditions that frequently accompany autism. There is no wheelchair, there is no cane, no feeding tube, no weak heart. There is the sudden, scary snap. Intermittent Reinforcement, a most powerful psychological dynamic. Rats.
He’s not like that now. Now there is this fast-moving young man, very content to be himself, anywhere, with anyone. He is game for anything: a trip to the mall, Home Depot, a restaurant, a bookstore. He will try on shoes, try new foods. He will sit and read his social group schedule over and over again, and leap up off the couch when I say, “Okay, it’s time to go, Nat.” He loves visiting people, loves parties, I could go on and on (especially since this is my blog, and not a newspaper or editor I’m writing for). So what, then, is my excuse? Get over it, right?
There is, however, my low-grade anxiety that is always with me, like a small, invincible infection: the worry that somehow, what he does with his time is not good enough. And it is that feeling that I dread on a Friday afternoon. I have pinpointed it as of today, right now. The feeling, the fear, that I am allowing a mediocre existence for my son.
Which is interesting, because that was exactly what made me dread Baby Bellies. For the longest time I felt like I wasn’t very good at teaching because I could not reign them in. I could not get them to systematically learn the moves. I couldn’t get them to pay attention long enough, before they starting pleading for the snack I always bring. I have a memory for the bad stuff, that’s for sure. The long hour of getting pissed off, of hearing my amazing Arabic music, and having no one really listening. Of not knowing what level to teach, what to expect.
Sometime recently, it gelled, however. I realized that I could sit down, pick music at my leisure, and be there for them — let them come over to show me stuff and to ask questions. When I feel so moved, I stand up and start doing the Basic Egyptian (walking with a hip lift, trading off sides), or some zilling (playing finger cymbals). Every now and then a pair of girls will have a duet they made up. Today S and J invented “the tunnel spin,” which is the two of them facing each other with two veils draped over their heads, covering them both, and then they spin apart. The other girls wanted to learn it. Then E starts in with her move, “which is kind of like jumping rope with a veil.” “Just be careful not to trip,” I say. Off in the background, always always where she is not supposed to be — by the desks piled up in the corner — is K, saying, “Pretend I’m…” or “Pretend you’re…” Those were my exact words when I was her age. And I thought, how I would have loved a class like this, with a mellow teacher who never yelled, never shamed anyone, encouraged, taught you when you wanted to learn, and brought in all kinds of dress-up materials. Weird music, but nothing’s perfect.
So I ended up having the best afternoon with the Baby Bellies, staying way beyond the scheduled hour, so they could show their moms what they had learned. R does quite a decent hip-bump sideways walk with double veil (something I don’t think even Petite Jamilla does). K is just in her own world, wrapped in her turquoise like a blue mummy. I just sit and soak it in, a happy sweet-filled sponge. And so, I’m going to go into sponge mode tomorrow when that van honks.
I got de fire in my belly today — and those flames are dancing around Nat’s future! Where the F is he going to live in a year and a half? I ain’t gonna wait around for no stinkin’ entitlements to kick in — or not. Today I made two appointments: one with a group called Specialized Housing, who have been setting up group homes for decades!!! Another is Jewish Family and Child Services, part of Combined Jewish Philanthropies. I am going to go to these people and pick their brains dry. Call me the Housing Vulture.
Here’s the fantasy — and don’t tell me I can’t do it!!! As an autism mom, you must know that is the best way to get us going and doing it!!!!!!! I am going to gather 8 or so guys like Nat (of course I’ve known them for years — stay in touch with those autie families, folks — in the end, they might just become your family). I am going to go to our Housing Authority. I am going to find a fixer upper near my town. We will all pool our money and buy it and fix it up. We will get assistance from philanthropic organizations. We will pool our services to pay for one qualified live-in staffer. The guys in the House will share a kitchen and a livingroom and have chores to the best of their abilities. I will try my damnedest to get a job coach for my darling so he can continue to be the best darn worker Papa Gino’s has ever seen!!!
If I succeed, or when I succeed, I will write about how to do it. Autism Parents of the World, Unite! Our kids will not be lost. They will have a future, we just have to really really plan and try to stay awake and alive.
They never tell you what it’s like because they are still struggling with that realization themselves. Tell you what it’s like? I got my own problems! So we all have to find out. We all do, over time. Maybe autism is your first time. Childbirth itself was the first thing for me that made me realize down to my bone marrow that life was not going to the way I had planned. Autism was the second thing. I hadn’t even planned, actually; I had expected. In my mind there was a semicircle of things spread around me that were possibilities, back when I was pregnant with Nat — little girl storybook things like “he’ll look like me; he’ll look like Ned. He’ll be into school; he’ll be kind of bad. I hope he won’t become a criminal. I hope he doesn’t have a disease. I should breastfeed him so that he’ll be healthiest. I’ll research the stroller safety, the crib bar distance. I hope the cat will like him — what if they don’t get along?” So adorable! I was a baby, too.
Once Nat was born, the semicircle became a circle, stretching behind my back, to things I couldn’t see. I had no idea, before his birth, how the worry about his pure survival would give me a permanent feeling of anxiety; it just would not go away. How in the world could such a soft pink hairless boneless creature survive? What? It’s all up to me? That’s just crazy.
But I got over that, inured to it, callused. So I could just do what it took. Become a young mother, no longer a carefree girl (well, let’s face it, I was never carefree. There’s always something to worry about, after all. As a fourteen year old: will that boy like me? As a ten year old: will that new girl be my friend? As a six year old: can we go to Old MacDonald’s Farm for my birthday?
So the young mother sloughs off some of that flawless youthful skin and suddenly has circles under her eyes. Give up the damned dream of breastfeeding because how could it be the right thing if he howled like that, clearly starving? No no, it could not be right. So they were wrong about that. The bottle was better for this baby. What else were they wrong about?
Guess what else they were wrong about. This baby was not progressing the way all the books said. I could not interest him in anything. Yet he was clearly happy. Was it the case that babies were not all alike, that they did not all watch Sesame Street or delight in rolling a ball? That they didn’t give a shit about other babies? Like people, they were all different!
Gradually, I figured it out. Or in sharp ugly bursts of awareness. Oh. Oh God. It’s the worst thing that could possibly happen to a person. It really is. My child has something wrong with him. What now? Penelope Leach and Dr. Spock and Brazelton had no answers for that one. Neither did my doctor. All the people I’d looked up to, suddenly the mask slipped and I saw that they were as young and stupid as I was.
When you see that, you lose years of life. So I became a much older woman at that point. I was “seasoned.” I was seasoned so much I was like Cajun food. My flesh became plump and yet not all that juicy. I was completely thrust into the mother phase of life, where my job, my identity became all about being strong for someone else. I had to take extra special care of this child because he had something.
I became old beyond my years, as they say, and because I eventually figured out how to survive that stuff, I was deemed wise. I was wise simply because I was not dead, and neither were my kids. There were more ugly surprises along the way, rabid bite-in-the-ass kinds of surprises, like sleep disorders, manic behavior, aggression. Traumatized siblings. But there were other issues, other tragedies, completely unrelated to autism. I didn’t know that things could be even worse. Terrible mistakes, irrevocable scarring. Things wrong with people, not just Nat. Nat turned out golden and beautiful, strong-limbed but flexible. Brilliant in his own way. Max and Ben, they struggle, they are scary, too. Children grow, all of them, no matter what they “have.”
And here’s the thing: People leave. They leave you, in all kinds of ways. I find that now I am increasingly grateful for the ones I still have: children, husband, parents, friends. Life. We never know for how long. We forget, unlike the cavemen or the poor desperate Medieval folk, that we are completely vulnerable organisms. As soon as we know that, once I knew that, I became old, like the boy wizard who read the Book of Knowledge and overnight had a long white beard. I am on the other side, an older mother: aware, all too aware.
The part of me that is wise, though, is not that I know so much. It’s only that I now know it won’t last forever, and whatever it is, I am damned lucky to have it.
I use the puzzle piece symbol on my website, in a kind of loyalty to my younger blogging self. I remember when Ned and I searched for a subtle and elegant puzzle piece that was in the public domain, and we eventually found my clear one. Do I think of Nat as a mystery? But I know him so well. There are things about him that I don’t know, of course, but to assign a puzzle piece to him and not to enigmatic mellow Max or smoldering secretive Benj — not sure if that’s the best use of a compelling symbol.
The mysterious part of Nat, the aspect that fascinates me and gives me both joy and sorrow is his language. Sorrow because I want more. Joy because sometimes I get a little bit from him, and then I want more — but it’s a good kind of want. I have always been interested in how people talk, their particular idiosyncrasies, their voices. When I was a kid I loved doing impersonations and part of the secret of a good impersonation is to channel that person, to immerse yourself thinking of them and how they talk, and then for a moment, letting yourself become them. It’s not that I get the timbre of the voice or the pitch or tones right — not like Rich Little or Dana Carvey, let’s say — it’s that I channel them wholeheartedly for that second or two. It’s fun. Benj can do it, too; and he’s even better than me at remembering precisely what a given person has said, so his imitations are amazing.
Capturing how a person talks is like finding an open door to their mind. If you can think them and make their way of talking, you can kind of know them a little bit. A good writer can find other people’s voices and speech patterns this way. One of the best writers in that regard is Sharon Kay Penman, who writes good historical (non-bodice-ripping, except where warranted) fiction about old English kings. Her best are Here Be Dragons, (about Llewellyn, the last king of Wales before it became an English add-on), and The Sunne in Splendour, which is about the last of the Wars of the Roses, of Edward IV and his much-maligned brother Richard (III). Pennman basically turns history on its head and rethinks Richard, building the case that he was not the Crouchback or the murderer of his nephews. Rather, she draws Richard as a faithful, bright, but humanly flawed brother living in terrible political times. In this story, the bad guys are the Tudors who basically steal the crown from both the Yorks and the Lancasters. Not only does Penman get inside this famous story and find details — or create them — that really convince us; she also seems to have a feel for what the speech was like. They talked 15th century, but somehow, it worked. “Your life is in mortal peril, my Leige.” I love that stuff.
Ever since Nat was a tiny guy, before age two, I have been fascinated and in love with how he talks. I have also been terrified by it. When he spoke only from his books, repeating lines over and over, exact same emphasis, it gave me the chills. That’s because I didn’t know. I feared something was wrong with him and this seemed the real evidence. To write sincerely and honestly about this, I need to immerse myself in my younger self, grab hold of some detail or imagery that transports me to those days. I have to sit still and imagine the scene, and allow the slow simmer of emotions begin. I have to then type as I’m remembering, with little editing.
I no longer feel fear when I hear how Nat talks, because I now know, and have known for nearly two decades, what it’s called, what it means clinically. Communication disorder, neurological problems (synapses not met, pathways closed off). But the mystery of what this means about Nat remains. Even that is not such a mystery. Nat processes language very slowly, and needs or likes to repeat words and sounds. He likes to distort words so that they become his own.
When Nat talks now, I feel something like hunger. I want more. And more and more and more. It is delightful when he shares with me his mind and experiences. Last night, for instance, he went out with his social group and they saw movie. Ned told me that when he picked Nat up, they had a conversation about it, Nat-style:
“Nat, what did you do tonight?”
“Movies. You ate pizza.” [something like that]
“Nat, what was the movie about?”
Long pause. “Dragons.”
And yes, they had seen, How to Train Your Dragon. No mystery, just perfectly to-the-point. If I need to know more, I guess I’ll have to read the book/see the movie.
Tonight Nat referred to The House as “home.” It stuck in my throat like a piece of dry steak; there’s nothing that will make that thing go down once it’s passed your teeth. But I kept trying. After he said that, I inserted the words, “The House,” and “tomorrow- when-you-come-home” several times in the conversation, because I am that petty. So now he thinks of there as home. And so what are we, chop liver?
I wonder what Nat thinks of this place, his childhood home. What are his memories like? Does he get shots of scenes shown incongruously with others from his past and present, like I do? Does he suddenly see our previous home, his nursery blue walls with the Laura Ashley border, when he’s looking at the walls of The House? Are words tied into the images, or are words too difficult, even in thought and memory?
When did I stop thinking of where I grew up in Connecticut as “home?” Was it when I went to college, or when I got married? Now when a childhood memory flashes before my inner eyes, it feels odd, like “did that really happen?” Today, for example, when I posted a shot of a rabbit in my garden (see below) on my Facebook page, I was thinking of Dad. Dad loves rabbits, identifies with them, defends their garden-destroying ways. I love them, too, but I love sparring with Dad even more. Dad reads Watership Down every May, for his birthday. He knows the language of the rabbits intricately, and the way they thought as they made their journey to their new home. He discusses the qualities of Hazel’s reluctant leadership, the growth of BigWig, the belligerence of Woundwort; he sees how each character has his use and purpose to the rest of the group in the warren.
When Laura and I were little, we played a game called “rabbits,” with Dad. We would be crouched around the living room floor, pretending to eat lemon leaves and lettuce leaves, but eventually, inevitably, Mr. MacGregor (Dad) would show up and try to catch us. He’d call for help from Mrs. MacGregor (Mom), but she seldom helped him. That would have made it really an unfair match of them against us. Mom would call things out from the kitchen or wherever, but Dad was pretty much on his own. This was our game. Sometimes instead of being Mr MacGregor, he would be The Trap. He would lie on his back on the blue tiled foyer that was next to the blue living room carpet where our garden was. Every so often he would raise a robotic arm or leg with a “chk-chk-chk” mechanical noise, because after all, he was a machine. I can see it and hear it as if it were yesterday, and yet I also see how strange this whole scenario seems.
Dad perpetuates our memories and our childhood by talking about the rabbits and The Trap every now and then. He has an amazing memory, so he dredges up jokes and games from forty + years ago, so that we remember them as if they just happened. And yet when I really think about them, it feels like they couldn’t possibly have happened to me.
So what does Nat remember? When I try to quiz him, like fill-in-the-blank, from a favorite childhood book, he looks at me blankly. It could be that he doesn’t remember; it could be that he doesn’t want me to do that. After all, Max and Ben only barely tolerate my frequent dipping back to when they were little. Maybe Nat feels the same? It is so hard to know what he feels, what he thinks about. I know that it is that way with the other two as well, but they still communicate so much more with their expressions. It’s like I keep grasping at them as they were, and sometimes they let me catch them and they indulge me in the memory. Nat doesn’t. He doesn’t even think of this as “home.” I guess he has made his way to the new warren and is very happy with his place in the group there. And I’m supposed to be Mrs. MacGregor and not interfere.
Even though I am no longer a member of my town’s School Committee, I am still a part of the Massachusetts Association of School Committees and Superintendents email listserve. A propos to a question posed by a School Committee Member from a different town, I wrote the response below. Massachusetts is one of many states in our country that administers a high-stakes test that determines whether a student gets a diploma. I have protested this policy ever since its inception, over 10 years ago. Here is my argument. If you agree, feel free to substitute your own information and state and send it along to your Board of Education, local newspaper, and state representatives.
What Massachusetts ought to do is administer the MCAS but not tie it to graduation, i.e., not make it a high stakes test but simply another standard by which to measure a student’s proficiencies. Otherwise you do indeed get a system that discriminates — not only against better resourced school systems (per today’s Globe op ed) but also against different learning styles.
Let me give you an extreme but poignant example. My own son, severely autistic, now 20, has benefited phenomenally from my town’s generous special education. Despite great struggle, he has learned how to read, how to converse (limited, but still…), how to live in a group home, how to be street safe, and how to control his frustrations that come from such a communication deficit as his (he is no longer aggressive, thank God and thank a terrific education). He also works 5 part-time jobs: 3 at his school, 2 at Papa Gino’s. They are fading out his job coach because he has become so independent and capable. He is now an educated person who can contribute to society.
If you measure how far Nat has come since he first started school at age 3, you would probably see off-the-charts progress! And yet, because of our system, Nat will not get a diploma when he turns 22. I don’t think he will care, but it always makes me sad because what does a diploma symbolize these days, if it won’t reward someone who has worked as hard and come as far as Nat? To me it’s some sort of exclusive club membership, then — not at all what a public school education is supposed to be about.
It is very hard to get it right. When Nat is home for the weekends, it is tough to figure out what he’d like to do, other than walking all over the house, again and again, or going from bed to couch to bed. I suggest movies, reading, or music to him, but yesterday he kept saying, “no.” I don’t feel I should force him to do something on a Sunday. But I do wonder if he would be happier having a schedule. At one point, I even thought I heard him say “schedule,” in his stream of self-talk. I stopped him and I said, “Nat, we could make up a schedule.” “NO.” Am I supposed to pursue this, behaviorist-style, and force the matter? At 20, if he views home as the total stimming ground, how do I change this view?
When I think this way, my head gets very murky, like I’m suddenly swimming in the part of the Bay that’s got the icky hidden underwater grasses. You can’t put your feet down anywhere, because what’s in those grasses? Some kind of weird tick things? Crabs with open claws poised? Way-too-soft mud?
I rewind a little and think in terms of real activities to do with Nat, that we both enjoy, rather than “what are Nat’s choices of activities I could set him up with?” When I think the latter, I get overwhelmed with how few things I can think of. But when I think, “It was nice and easy going to Starbux with Nat,” and I imagine the walk, and how long it will take, and the people staring or not, I almost always decide to do that.
Yesterday I did not. It did not even occur to me, I have to say. Yesterday was a day like an old puzzle you find, where you know there are going to be missing pieces, but you work on it anyway. I knew from the moment I got up that I was not going to have enough to do. I knew I was going to plant seven shrubs but this would be over in an hour. I have a good book, and a new crossword, too. Yesterday I had cleaned the house, top to bottom. Laundry was chugging away. Groceries totally need to be bought, but I just didn’t want to. Or I’d see if someone would do it with me. Max busy with friends, Benj busy with some new animation project. If I don’t know what I’m doing with myself, how can I begin to know what to do with Nat?
Bad thoughts beget bad feelings, so for a lot of yesterday I had a kind of low-level guilt running through me like a cold coming on that you think you can ignore. Max and his friends saw the bare cupboard and offered to go buy a few things so they could make pancakes, bacon, and eggs for dinner. Fine with me. I hate making dinner, I hate food-shopping. More guilt, but okay, go ahead, knock yourselves out. I listened and heard some joking about how we were out of food, but this annoyed me because why do you think we’re out of food? Because Max and his gigantic friends move through the kitchen every few hours like locusts.
I roused myself to bellydance for the time they were gone shopping (so no one would see). They got back and got busy with the dinner preparations. Nat kept traveling all over the house. I started to feel bad that he had no social group this weekend, so no friends. I wondered if he wanted to be with Max and his friends. I wondered if he was sad being alone, on his house journey. I would have been. I was.
(A tiny little thought flashes through my head right now, too little too late, but it says, “were Max and his friends gainfully occupied by playing video games all afternoon between snacking? Is that better than what Nat was doing? I think so because it is “social.” But at least Nat was getting exercise.)
Max’s friend put out a plate of bacon, while they finished up setting the table. The plates of fluffy yellow eggs were set at each place. Nat was already sitting down, eating. At that point, I should have told him to wait, but it never occurred to me. I grabbed three pieces of bacon off the plate and gave them to him before we all sat down. Because I wanted him to have “this little bit of joy, Poor Darling.” Those were my feelings, the underlying ones. Let Nat get away with not-so-great behavior because I feel sorry for him! (I only realized this in the middle of the night last night). Plus, what did Max think, seeing me just go and let Nat eat before everyone else?! Did Max think, “oh, well, it’s what Nat does.” Did his friends also accept it, because Nat is “different,” and so in a category by himself?
By trying to take care of Nat I think I was unfair to Max. I think I was also unfair to Nat, by not treating him like everyone else. Okay, okay. Learn from it. Next time, he waits his turn. Next time, he helps and sets the table. Think like Scarlett, tomorrow is another day. And sure enough, it is.
They’re extra-ordinary so better be wary
Because they come in every shape and size
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.