“Sweet soul in a little cat body,” that’s what my sister Laura used to say about her cat Pushkin. Pushkin was the first cat I ever really knew; he was Laura’s first pet in her grown-up life, acquired when she moved off to medical school in Rochester — “Ra-owr-Chester,” she called it, as if it were Pushkin saying it. Pushkin was one of those black and white cats, whose markings formed a black cardigan buttoned down his front, and a perfect little black mustache under his nose. He was a tiny Russian aristocrat, as dignified as he was cute. He was lethal — I once saw him bring down a bird flying low over a garden — but hilariously adorable.
Laura getting Pushkin was a new phase for us. He was adult life. She had just gone and adopted him; I don’t know what her thought process was, but getting him was a statement of independence. Younger sister that I was, I did not have nearly the same sense of independence — at least I didn’t think I did — and so I was in awe of the entire cat-acquisition-and-raising process. How did she know what to do? I guess she read stuff about it. She knew to have the litter box and the food bowl. But what else were you supposed to do? How did you know it was okay?
I think perhaps a lot of people go into adulthood less consciously than I do and so, like Laura, maybe they just do these things without worrying about “am I doing it right?” Until they finally meet their match, and then they have some thinking to do. Pushkin was not Laura’s match, however. Soon after she had him, she got Sweet Pea, who was all black, and my favorite cat in life so far. Sweet Pea had a dumb look, because you could not really see his face, other than his always wide eyes — the mouth and nose were lost in the darkness. Sweet Pea looked unintelligent, not smart like Pushkin, but Sweet Pea could talk. He could communicate with his loud, enthusiastic purr and his expressive meows. One famous family story is that Laura was upstairs and Sweet Pea was downstairs, looking for her. Meowing, ra-owing. Finally she heard him say, “Ra-er are you?” And she replied, “I’m up here, Sweet Pea!” And Sweet Pea came running upstairs to her.
Laura had her cats and then I had my baby. I think she may have felt, perhaps unconsciously, the same way about my having Nat that I had about Pushkin, like how do you know what to do? I remember feeling a secret small smugness that he was mine, that I had the rights to him, that it was up to me. I think she knew about that because we once had a terrible, bloody fight over him, over who got to sit next to him in the back seat. It blew up into the ugliest episode in our life together. I wonder what we were really fighting about. We were always so close. Sometimes it felt like we were a unit, a pair. We were not twins, but we were 19 months apart, in a Family of Four that did everything together, intensely. She and I fought like cats and cats growing up, but also shared the exact same sense of humor and perceptions of many things.
Laura helped me make my Labor Tape, the cassette I was supposed to listen to while giving birth to Nat — I was trying to have the birth my way, but it turns out that’s only for hamburgers — and to this day those songs bring back a satisfyingly complicated blend of emotions. Laura also attended me during Nat’s birth, with Ned on my other side. Laura and Ned had become close during our college days, so much so that even they fought sometimes, which back then was a true sign of closeness for us, whether you could have awful fights and then totally make up moments later.
Laura was there that day when Nat first became truly alert, a few days after his birth. We laughed and laughed over it, how his eyes were just crazy-wide open. There are so many pictures of her playing with him and as the years go by it is hard to tell if some of those pics are of her or of me. Recently she confessed that she used to go into his room sometimes when he was sleeping and wake him up so we could play with him some more. Every phase of his life is marked for me with memories intersected with Laura.
There was that terrible big secret we shared, too: what was going on with Nat? We didn’t discuss the possibility that anything was wrong. Our lives had not yet wandered out of that protective circle of our childhood. We had our fears, sure, like all children, but in the morning you would wake up. I would bring all of my questions to her about his development, as if she were a sage. She was merely doing her big sister thing, reassuring me without really knowing anything, but just confident that all was well based on her enormous love for him (and me) Why wouldn’t everything be well? It always had been! That was childhood. That was how it went as adulthood began, too, with Pushkin. You moved into new phases, you didn’t have to think about it so much.
Ned and I just finished our will and special needs trust last week — about time, considering Nat is now 21. We had to figure out trustees, guardians, all of those soul-grinding questions, those scenarios with Ned and I being no longer here. All those impossible answers. But the answer for us was pretty clear: Laura. Laura who now has four cats she rescued, two amazing children, and who tears up with pride over every single thing Nat does. Soon after he was born, and her cats were still young, she referred to Nat as a “Sweet little soul in a little Nat body,” and we laughed. She still does, minus the “little.” When I told her about the will, she said, “Of course,” just like I knew she would.
Learning to read has always seemed to me to be kind of a mysterious process. One day when I was in first grade, the letters on the pages of The Little Red House book suddenly solidified and formed words, right before my eyes. I took the book home in excitement that was more like panic, for fear that those words would run together again in a blurry mush, that I really did not know how to read.
But I did. Decades later, I was dealing with so much in terms of my own little boys, that Nat learning to read was not at the top of the list. I was in a panic again, an all-encompassing anxiety that all of the early learning skills were beyond his grasp. He was seven and in a Pre-Kindergarten, doing his Kindergarten year. That was the first and last time he has ever been in my town’s schools. I had acquired the Kindergarten curriculum and I had fashioned an IEP for Nat, with goals that matched the curriculum and ideas as to how to get him there. Trace letters in coffee grounds or sand to learn letters — maybe through the fingers would work better than through the eyes. Sort letters and colors and numbers and shapes, to grasp their differences, and also to grasp even the concept of “different” and “same.” The team accepted my list and made it happen; I look back on that now as a huge victory and a real plus for my school system.
At home we acquired a few toys and books for learning to read: Spell-A-Puzzle for his literate fingers, and Bob Books for his deft eyes. Ned and I don’t know where the Bob Books came from. I figure it was my mother, who is a librarian, teacher, administrator, and basically literacy specialist extraordinaire. Growing up it was said that mom read “seven books a day.” You talk to my mother and you will believe it.
I thought the Bob Books were adorable. So simple, so brilliant. Literature stripped down to three-letter words and pencil-drawn minimalist people: Mat, cat, Sam, doing very basic but important things: “Mat sat;” “Mat and cat sat.” Once he had mastered that mysterious concept of understanding how letters combine and all their sounds work together to form words — using Spell-A-Puzzle — Nat became comfortably literate using the Bob Books to read sentences.
A short time later, Max learned to read as well. I experienced so much of their childhood as happening almost simultaneously, because learning was so drawn out for Nat, who was two years older, and so quick for Max, who was so eager to do everything. Max’s first books were Cave Boy, and Sir Small and the Dragonfly. And also the Bob Books. He whipped through those cute little pages. Their simplicity touched him somehow. When he started drawing, and even in his art now, his characters have a similar soft roundness to them as the Bob Books people. He was so into these books that I once had the idea of making our own Bob Books, with Max and his friend Jamie as the main characters. This idea was born from my Nat Books idea, having learned that books which feature the child are so much more meaningful to him.
I needed to teach Max and Jamie that they can’t always have goodbye treats. That was a problem back then, especially with Jamie. She had so much trouble leaving a playdate with Max, that Jamie’s mom and I always used the goodbye treat to soften departure. But I knew that it was not a good habit for them. So I drew a Bob Book with Max and Jamie learning how to leave without the goodbye treat. Learning about how sometimes these lucky things happen, and that’s what makes them treats.
Last year, Max got a part-time job with a start-up company that makes early reading apps for the iPhone. Editing sound files for First Words was Max’s first assignment. Max’s second assignment was to work on all the sound for an app of — Bob Books!
The first edition of Bob Books is now available for the next generation of Nat’s, Max’s, and Ben’s (yes, he, too, learned to read with the Bob Books! The three-letter name and word format worked especially well with my three-letter family members.) Only this small-screen savvy generation will be able to learn to read anytime Mom or Dad reaches for their iPhone. You can buy it here:
I have these bouts of insecurity, where I compare myself to others and feel that they are higher-functioning than me, that they are doing more, better, etc. I will then assume that they know how mediocre I am because of how I feel. During these times of despair, Ned will say to me, “Don’t judge your insides by other people’s outsides.” By this he means that even though these others may appear to be doing way better than me in one way or another — spiritually, intellectually, physically, etc. — that I may be making the mistake of feeling inferior because of how I’m feeling. But they might actually be feeling as inadequate as I do.
If you look at your own case and say, “I’m so — blah — and the rest of them are so — wow —” then you are guilty of this same thing, because you probably look “wow” to them, too, and who knows how they feel? And who cares, really?
Okay, let me rewind a bit, because if I’m lost, you must be even loster. What I mean is, we have no real basis of understanding a person’s inner life, not really. We have our tools for assessing each other’s mindstate: we have agreed-upon communication, of facial expression, body language, spoken language, eye contact. But all we really have is our own instruments for observation. You can tell me that you feel great love for me, but how do I know how love really feels to you?
What if you did not know the word for the feeling of love? What if you felt maybe a pleasant swelling in your chest, a warmth in your throat, a lifting of your spirit, when I walked into the room, but you did not know what it was called, how to tell me, or even whether to tell me. Maybe you felt it for me but you did not actually connect it to me for some reason.
If you merely looked up when I came in the room and then looked away to think your thoughts, if you had not learned to transfer that feeling into your eyes or mouth, then I could easily assume that you don’t care much about me.
If scientists observe this behavior — the common thinking would then be that you either did not or were not capable of feeling love for me. If all you ever use is a hammer, then every task you perform had better have a nail.
Yesterday Ned and I were discussing this with regard to Nat. I made my case over and over and Ned took it and ran with it. He said, “when we look at Nat and decide that he doesn’t have a theory of mind, we might be gauging his inner mental state by his outward behavior. We may ourselves be guilty of not having a full theory of his mind.”
We may not know how to speak “Autistic.” We may be dealing with a different culture. For each individual!
I don’t care if scientists like Simon Baron-Cohen have made observations that prove without a doubt that people with autism have difficulty with Theory of Mind, empathy. I don’t even care that Temple Grandin is convinced that she can only tell herself what love is, that she doesn’t feel it for people the way others do. Maybe that’s not what she said, but that’s what I remember reading: that she did not believe she felt love the way neurotypical people do.
How do they know that? I think that it is these theories that do us harm. They create despair. They create strata between the Mindreaders and the Unmindreaders. They create a feeling of inferiority based on outsides. Once I shucked this perspective, I became much closer to Nat, and things started going much better between us. Do I know why, for sure? No. So why not just believe that it is because we are connected? The heart knows.
You don’t even know how green looks to me. I will never know if I love Ned more than he loves me. The other mind is unknowable, autistic or not. The truth is, either none of us has a Theory of Mind, or we all do.
Tomorrow, November 15, is Nat’s 21st birthday. During the first years of Nat’s life, I was the only one who knew that there was something — . But even I didn’t know that. Plagued by self-doubt and low self-esteem, I denigrated my instinct; I looked away from what I saw. It was too hard. I even had to convince Ned, the love of my life, the smartest person I know. I had been alone in my life, but those two years — 1989-1991 — were the loneliest I ever faced. During the day, it was the baby and me. Nat and Mommy. Trying to do the baby-and-mother thing, but actually swimming through a lot of murky, viscous, water.
But I was doing the baby-and-mother thing. I was. Going on walks with the stroller. Reading baby books. Filling sippy cups. Teaching first words. Enough love to fuel a hydrogen bomb.
It just didn’t feel like I was doing it right because I had no self-confidence. I also had no model in my mind of atypical motherhood.
This is an old story. But every time something happens, it becomes new again. I’m thinking about his imminent important birthday. I’m thinking about how I went to Disneyworld with Nat just last week. I’m thinking about how he’s traveled to Colorado three times, and only once was that with us. I’m thinking about how he moved out of his home, away from his family, and simply adjusted. I’m thinking about the lights.
The lights being left on, and how that used to drive Nat to tantrums. How he still hates outside lights left on, but now he tells us, once or twice, paces a bit, sucks his thumb, and then forgets about it.
So I’m thinking about before he was diagnosed and how I told my dad that he could read — or maybe he was simply memorizing. But still. I remember feeling this hot pride, that grabbed me by the throat so that I could barely speak. But I told Dad that day how finally I could feel hopeful, that despite how things so rarely seemed to go the way they were supposed to with Nat, finally he had something that was really really amazing. “You’re going to find he’s gifted,” Dad said with smiling certainty. Nat was gifted. He was odd because he was gifted! I grabbed onto it to keep from drowning. See? I was going to have it all, after all!
I waited for this giftedness, this brilliance, to show itself some more. I waited for the warmth of knowing that I was right, and that he was okay. It did not come. I felt myself letting go, more and more. Each new thing I had to do was like a sell-out: going to preschool felt like the end of his innocent childhood. Now he was a “special needs” kid. Not only not gifted, but actually a kid with problems.
There were occasional glimmers, times when I would revisit the whole idea that maybe this was all a bad dream, that Nat was really just fine, just misunderstood. Those were the times I wanted to take him out of school, and close him in from the rest of the world. I wanted to go back to the cocoon of his babyhood, but his babyhood wasn’t really ever like that. Still, there were these flashes of the boy he really was. Small things like learning to do chores. Cooking. Swimming.
I began to see that although nothing about this boy was easy or obvious, some good things were very very possible.
Bar mitzvah at thirteen, first friend at fifteen. Sleepaway camp in Aspen. Working at Papa Gino’s. Moving out.
Attending a talk with me at a conference.
That feeling, that tightness in my throat is with me a lot these days. Dad was right. I was right. Nat is gifted. Not a genius, nor a savant. Not “normal.” Not cured. Not an angel or a saint. But in living his life to his best potential, being good and smart and brave, he has given me faith that good things can happen. That’s the gift.
Went to a conference today organized by Massachusetts Families Organizing for Change, all about building a home for your developmentally disabled loved one (adult child with ID). There, my past became my future. People I knew from years ago, at parent conferences or support groups or music therapy or family gym — we were all there, now trying to figure out the last piece of the puzzle: Adulthood.
Peter Berns, CEO of the Arc of the United States was the keynote and his talk was about the Top Ten Policies You Should Know about residential and day program issues. Clear, dynamic, and warm, Peter was able to make many things understandable to me. The biggest thing that jumped out at me was that we families dealing with developmental and intellectual disabilities should thank our lucky stars for the Healthcare Reform Act that has recently been written into law. First and foremost, the barriers to healthcare for people like Nat have been removed. No one can ever again be denied coverage because of “pre-existing conditions” like autism or ID. Obama’s contraversial healthcare bill is as great a landmark as the 1975 IDEA (Individuals with Disabilities Education Act), which legislated that any child with a disability must be allowed to attend public school in the least restrictive (most normative) environment. No basement or closet classrooms; no more institutions for all (which was the common practice). No more shutting the child in the attic to keep him safe — and forever dependent. Whatever party you belong to, you must be able to see that a country as great as the United States absolutely needed this legislation to be law. I know the issue will be how to pay for it. We will pay for it. We paid for two wars, using far more money than the Healthcare reform will require. We will manage; we are the United States of America, the place with “your tired, your poor…”
I also learned that the President and Congress have made available about $3billion for something called the Community First Choice Option, which is all about encouraging the DD/ID population to live in their communities (non-segregated, non-institutionalized) as much as the are able. But to qualify for the money, your state must apply. And so I learned that disability parents must get their Legislators to apply.
I learned that $60million is being provided to create a “one-stop” shop for states, so that there will be less confusion for consumers trying to access services. I learned that we parents and caregivers are going to have to consider filing lawsuits against landlords and homeowners that refuse to rent/sell to our disabled children. I learned that we should get our Legislators to support and co-sponsor the Frank Melville Supportive Housing Act of 2009, so as to create a lot more housing for the ID population. I learned that there is an Act called ABLE (Achieving A Better Life Experience) that is about allowing people with DDs and IDs to put aside money, in a way less complicated than the special needs trust (which can cost thousands to create), which would not affect SSI money, which would work across the States. Most importantly, it would target the institutionalized impoverishment created by the old policies and programs, by which I mean people like Nat are not allowed to work more than a certain number of hours or save more than a certain number of dollars (no more than $2000 total to his name) or he will lose his SSI benefits. What we have currently is a system that enforces dependency of the Developmentally and Intellectually Disabled, because they cannot have money of their own without losing access to important programs (like Medicaid, for example, which provides Day Programs).
I learned that Nat’s childhood and school days have been a training for me for his adulthood. All of the advocacy skills, all of the brain muscle and toughness I’ve built up over 21 years are now going to be called upon on a macro level. We are all going to have to become not just advocates, but activists. We are going to have to be familiar names to our State and US Senators, our Congressmen, our Legislators. We are going to have to make appointments with these people and keep our family members on their radar screens. Phone calls, letters to the editor, opeds. Even lawsuits. We will have to remind people over and over again that our developmentally disabled children have great potential, but they need the opportunity to prove themselves.
It’s all for you, Nat. And Sam. And Scott. And Zach. And Meredith. And Paul. And Jill. And Eli. And Rossi. And Matt. And Mo. And Austin. And Jeremy. And Dylan. And Nik. And and and and and…
I sometimes wonder if guilt is the most universal of emotions. Every religion/culture likes to claim that it has the market cornered on guilt (Jewish mothers, Irish Catholics…). But is there anyone who carries more guilt around than a parent? From the moment we know what’s going on in utero, we start thinking about what we are supposed to do and what we did wrong. Did I take my prenatal vitamin? Am I eating enough fish? Am I eating too much fish? What about the wine I drank before I even knew? And then the baby is here and it’s all concrete guilt, the daily stuff like, “Is it okay that I let him cry so much?” and “Why won’t that kid shut up?” All the way to: “Was I present enough for him?”
As both an autism parent and a non-autism parent, guilt is just part of my daily habit, as familiar to me as my own face. “Does Max realize that I want to talk to him but I just don’t understand so much of the technical stuff that occupies his life?” “Does Benj feel like I care about Nat’s rights more than his?”
And then there’s Nat. All of his life I have felt a vague, slightly queasy guilt, for the mere fact that he has a disability. Irrational, even offensive to say that, right? I apologize. Guilty as charged. But truthfully, it’s a feeling that’s in the mix. It’s not the only feeling, of course. But my thoughts today are about teasing apart the strands of guilt that clump up the otherwise colorful joyous ball of yarn that is my relationship with my sons. I always try to be honest, and so I have to admit that I feel bad that Nat — and his brothers — have a disability to contend with, that I brought them — especially Nat – into this horribly complicated world rather unprepared. All my advice to Max and Ben are crappy, seat-of-the-pants stuff. Sometimes platitudes: “I know, Darling, it’s not fair. It’s hard sometimes. But that is life; it’s not perfect, it’s hard and you are learning that at a very early age.” Great, thanks Mom.
But Nat. Nat got a shitty deal and it happened on my watch. And more than that, there are all of the things that I didn’t do, or that I can’t, or won’t do. I won’t go in for therapies that claim they’ll do everything from increase speech ability to making the patient less anxious. Yes to the former, not so much to the latter. My Momma makes him less anxious. A nice pillow makes him less anxious. Neighbors turning off their fucking lights once it’s daytime makes him less anxious. So if I have to drive an hour each way more than once a week and insurance won’t pay and no bona fide universities or hospitals have produced studies that demonstrate efficacy and safety, and if I’m not pretty much guaranteed some kind of very evident result, I am not doing it. Or if I don’t like the way the practitioner looks at or speaks to my son, I’m out of there. I am old enough at this point not to waste my precious time with my son to go in for that. Let me tell you, when your child gets to be 21+, you know that life is too short and you choose your battles.
At least that’s what I tell myself. How I feel about it is quite another thing. Most of what I feel guilty about is not understanding who Nat is. There has to be some fiction and fantasy to how I view him, because he just can’t tell me what he is thinking for the most part. His smiles are not always related to what’s going on. His anxieties are sometimes inexplicable. No matter how hard I try, to scrunch myself down into his head, I will never know if what I’m seeing is still my own head or his.
So I feel bad a lot about my relationship with Nat. It’s good, but is it? Is it enough? Do I enjoy him the way I thought I’d enjoy my child? I don’t want to say this, but the answer has been no fairly often. He is a lot of work. There is not a lot of tangible reward. There is a lot of scrunching myself, contorting myself to be what he needs me to be and so there is so little surface area of me in the relationship. And yet sometimes it feels like it’s all me.
Until Disneyworld. Somewhere in that running around, from Tomorrow Land through Adventure Land to Frontier Land, I burned off some of that guilt. We were just running, I was leading for once, he was following me, looking for me, listening to me for the next fun thing. And yet it was a give-and-take: “Nat, do you want to try the Dumbo ride or do you want another roller coaster?” and then of course the rephrase, to be sure that he is not simply giving me the default answer, the second of the choices: “Do you want to try a roller coaster, or do you want the Dumbo ride?”
And off we’d go. Only once did I impose my will and refuse to do what he wanted: stay till the bitter end for the fireworks. No, I was getting cold and I did not want to be on a crowded shuttle bus back to the hotel. I was tired, and I could not deal with all the staring that I had ignored the whole day. No guilt, because look at what I had done. I had flown 2 1/2 hours with my fairly deeply autistic son, taken him to this overwhelming amusement park, spent lots of dough, and shortchanged the conference I was supposed to be attending by cutting out as soon as my presentation was over. I exhausted myself.
I totally enjoyed myself. It was a completely selfish, indulgent, all-sensory enjoyment. We went where we wanted, we ate what we wanted, we went to bed as early as we wanted. We got along like old friends. I had no guilt, not just because I had given him everything he wanted, but because I had also gotten everything I wanted.
I went alone with Nat to Orlando this past Friday, just for one night. Of course I was a little nervous, because I had never done anything like that — with any of my sons, actually — but mostly because Nat has a history of difficult behavior, from tantrums in public to happily waving his arms while talking to himself. The tantrums have nearly disappeared in the last 3 years, but still I act like it could happen any minute!
I was sick of that, sick of the fear that kept me from fully enjoying Nat as much as I wanted to. So, with Nat’s 21st birthday nearly here, I decided I would take him with me to a conference in Orlando (the 60th Anniversary of the ARC of the US) where I would be giving a short presentation on an authors’ panel. The hotel was located right in Disneyworld, extremely convenient to the parks, and it seemed like maybe we could do it.
Of course we could do it. Nat’s traveled on long plane rides so many times by now. He’s proven himself over and over to be a guy who is up for many things, and also very forgiving, despite his own anxieties about the uncertain. I’ve written so many times about how he’s surprised me with his ability to try something new, or something that was not always easy for him. I am therefore not surprised that the trip was completely smooth. Security was easy, they were lovely to Nat; the planes were on time; the weather was high sixties and sunny; our room was comfortable; the presentation went perfectly.
We obtained the “Special Needs Pass” at Guest Relations at Disney, no questions asked and so we had no lines to wait in.
We found that we liked doing the same things. Once Nat became familiar with the scary-thrilling intent of rides, he was into it. With Nat, most things are about conveying the overall concept to him, and then familiarity breeds interest. By the time we were at Splash Mountain, Nat not only got it, he remembered Splash Mountain from when he was a boy of 8. I could just tell, because of the excited way he walked towards it and the way he kept repeating, “Splash Mountain, Splash Mountain.”
How perfect was it? We didn’t even get very wet on that flume. We walked and walked (very fast, which is the way we both prefer it), and eventually the sun was setting. I really had to pee. I figured Nat did, too. We didn’t want to go home yet. And here we hit our first snag: there were only large public bathrooms, no individual disability-friendly ones. We stood there outside the men’s room and I went over the risks in my head: 1) a creepy guy talks to Nat. 2) Nat inadvertently shows private parts. 3) Nat can’t figure something out, like the hand-motion towel dispensers and freaks out. 4) a creepy guy talks to Nat.
Then I allowed myself to consider these problems rationally. 1) Even if a creepy guy talked to Nat, Nat would not answer him. It often takes a lot of prompting to get an answer if Nat doesn’t know the person. Plus, why would someone single out Nat, a tall man not making any trouble? Chances seemed slim. 2) Nat is not all that aware of what counts as public nudity, although he doesn’t intentionally do anything inappropriate in public. It’s only about open doors. So, I could tell him to close the stall door. Most of them stay closed, even if you don’t lock them. Then at least he would get credit for trying to be private. 3) Nat could probably figure out an automatic towel dispenser or drier. He is pretty good figuring stuff out. 4) Again, why would someone talk to Nat, other than the fact that he’s very cute, and why would it be a problem? Most likely there would not be a creepy guy in this family-oriented place.
This is what I’ve come to think of as “the dignity of risk.” If Nat is to become as independent a man as possible, he must be allowed to do what he needs to do, even if it is a little scary, not completely predictable. I told him to go quickly and to close the door.
Just a few minutes passed and I then heard the sounds of very zealous towel-dispensing and crumpling. Nat came striding out, looking the same as ever: ready for the next thing. Now it was my turn, but I have done that before. I just tell him to sit down and wait for me, and not to go anywhere. I know he will do as I’ve asked because even if he got up to walk around, he always ends up looking around for me.