Susan Senator

Late January is a very still moment in the year, even when there’s a gusty storm outside. The world might be going to hell in a handbasket —  but there are some things that will never change: the way we want to hibernate, and turn inward during the dark winter.

My husband, however, fights this. Armed with lists on index cards, his laptop, and decaf, Ned remains full of purpose even as the wind rages against our windows. He always has a project going — most often it involves writing code or helping others fix bugs in their software, online. Even though he is sitting down, he is never still: he drums his fingers when they’re not typing, and he hums when he pauses to think.

When he’s had enough of his digital world, he looks around for our sons to see what they’re up to.  Natty is content with winter inactivity like me. In the normal weather the rest of the year, he and Ned will take long walks downtown. But in the deep winter, Nat will be on a couch under the pilled blue blanket, or burrito’ed in his own bed most weekend afternoons.

Ned lets Nat be on these January Saturday afternoons because they’ve already done a lot: Special Olympics basketball for two hours in the morning — I’d say Nat earns his nap. Ned, too, has earned a nap because a lot of that time in the gym he was barking orders at Nat — and others on the team. Ned’s never been a Special Olympics coach but he acts like one. He never misses a practice, and he stands on the court during their games. Well, often, too, he is typing at his laptop in the bleachers, but he’ll always have an ear out for what’s going on — especially if Nat is slacking off. “Nat why are you standing way out there? Get over with the team!” he’ll yell.

Once we’re home, Ned will turn to our other son, Ben. Ned won’t say this but he longs for the days when the boys really wanted to spend time with him. This is not a Cats-in-the-Cradle type of regret; he played with them all the time back then. It’s more that it is hard for him to stand inside this new phase in our lives. It seems like the one easy thing he can do with Ben right now is drive with him. Ben is seventeen so even this is a struggle, even though it is clearly in his interest to get his license. But one of the items Ned keeps in his list is getting Ben to practice driving. Needless to say, Ben has improved very fast.

Sometimes I despair over Ned’s regimented routines. I pout like a child wondering where on the index cards am I? But the thing is, I know I can get his attention anytime I want. If I told him I needed him to snuggle me right now, he would. If I told him I want him to come home from work early, he probably will. But I want to be barked at, too, sometimes. I want him to say, “Susie, what are you thinking of doing now?” Sometimes he does that, to be fair, but most of the time, we are orbiting each other, coming together for our coffee and our tv show. And bedtime. I feel, though, like I am the one who keeps track of the life of our marriage, and keeps count of when the last take-out occurred, when was the most recent dinner out, or how’s the sex been lately. I have never been able to guess what he’s thinking, or predict when he’s going to turn his love my way, but as the Allmans say, “Lord you know it makes me high” when he does.

I can get his attention, but I don’t try that much, at least, I don’t overdo it. On these cold days I find I’m craving my own company, baking or something like that. I try to get Nat to do this with me, especially when I’m baking cookies. Ben rarely spends time downstairs with the three of us; he’s in his ginger-candle-scented room cave, either “arting” or texting, snapchatting, whatever-ing friends. I’m comfortable with Ben’s independence, for the most part. It feels like it’s supposed to be that way. But I probably wouldn’t be this okay with that if he didn’t also just come over to me sometimes and show me something amazing on the computer.

Lately I couldn’t stand the cold that comes through our old window sashes — you can feel the breeze just standing near them. So I went around the house with old scarves of mine and stuffed them into all the window gaps. Weird that I did it, rather than Ned. There are some things that are just not on his list. I don’t mind. Now there are splashes of fuschia and jade poking out from curtains. I know that this kind of thing I do charms Ned. He’d never think to use beautiful scarves as a cold buffer.

We’re so different. He’s Nordic snowy silver and I’m Mediterranean terra cotta. I bake bread and splash stories on the screen while he types green on black. I’m impulse, he’s lists. I guess I’m his heat. And he is my shelter, he shapes me, he is clear thought and purpose. He’s the reason I can stay put, inside, and it’s okay.

Any social movement ultimately opens up to new discourse, different points of view. Autism is no exception. We’ve had the anti-vaccine groups vs. the medical/pharmaceutical/scientific institutions. We’ve had identity-first vs. person-first debate. We’ve had the Autism Speaks Awareness campaigns vs. the ASAN (Autistic Self-Advocacy Network) nothing-about-us-without-us/acceptance, not awareness, campaigns. And I believe each stage in the modern history of autism (starting in 1981, when Lorna Wing discovered Hans Asperger’s work and came up with the term Autism Spectrum Disorder), is important and must be faced courageously and thoughtfully. Wing’s contribution ultimately broadened the diagnosis to include many many people who — Steven Silberman points out — were otherwise marginalized in institutions as psychotic or intellectually disabled or criminal; or marginalized as weird, odd, crazy, nerdy, unlovable.

As ugly as these rifts have become, each phase, is important in the progression of autism as an important social movement.

The current rift is a new iteration of the AS-Self-Advocates division. The rift began with AS (Autism Speaks) using stories of suffering on the part of autism families to raise mainstream awareness of what families need.  The tension came from the AS emphasis on Autism-As-Child-Kidnapper. The positive sides of autism were not a factor, the idea of autism as identity was not actually known. I believe that Autism Speaks acted in the best interests of the cause of putting autism on the map. No one — other than autistics themselves, autism families, a handful of researchers — was thinking about autism, period, before AS came along with its empty stroller ads or Autism Everyday video. I give AS the benefit of the doubt, considering the pervasive view then, the ends-justify-the-means battle mode.

Before long, self-advocates who could communicate protested this attitude, rightly so, because it is potentially damaging to autistic people. The AS-type of autism hatred was a direct attack on who the autistic self-advocates were. This makes sense: if you harp on extreme and negative conditions of a disorder, then all people will want to do is eradicate it like cancer. And for a small, damaged minority, this view may translate to justifying violence towards autistic people (never ever justified.) Or, much more likely, for well-intentioned but misguided parents, questionable or even harmful, unscientific “cures” or treatments, like the use of chelation (which killed one child), or giving a child bleach enemas, or the drug Lupron that staves off physical development in the child.

These are horrible approaches, unjustifiable. But let me ask a question, without condoning anything harmful to a child:  Might there indeed be something environmental harming our children? This is a question worth asking, and it is a thread that runs through the anti-vax, anti-autism groups. That, plus the GI connection to some autistic-like symptoms — these came in part from the anti-autism group. Formerly discredited, now many doctors urge looking at intestinal issues and physical causes for behavior problems. Furthermore, there are immune-compromised children who cannot be vaccinated but should not be ostracized for their decision.

The new issue is a further evolution, and the term “Inspiration Porn” sums it up. We now have autistics who can communicate decrying the parent bloggers who appropriate their autistic child’s life story and use it as a way to promote themselves, or to get sympathy from other parents and groups. I’ve read tweets that express outrage at the pain parents describe of dealing with autism. The mostly legitimate fears for the parents’ own children get translated to callous, clueless unjustified whining.

This is a bloody split, because it gets right to people’s hearts. If you have a child  — or an adult loved one with autism who cannot communicate, is self-injurious, acts out, destroys things, runs away — you may have a very difficult time even believing that the self-advocates understand your child’s — and your — struggles. And the name-calling, the put-down of “Inspiration Porn” doesn’t help. The challenging behaviors and episodes are very real. Yet they are not the whole picture of autism by any stretch. And yet again they may be a very large picture of some families’ lives. Mine included, at several points. No, we don’t want society thinking Autism = Violent People. But we do want help for those families who are living with it. Yes. We. Do. We just need to find balance in how we talk about it.

There are self-advocates, too, who explain much more fairly and accurately the harms of ableism, like this one. I’ve learned about ableism and the ways I’m likely guilty of it, from the self-advocates like this one and from ASAN. I’ve asked myself what I should do to change, if indeed I am guilty of Inspiration Porn myself. The ableists see everything through the Poor Autistic filter. They want to force the mainstream, the neuro-typical. They see autism as inferior to non-autism.  Hugely important for society to see this, the wrong of it, the harm, the psychological fascism involved.

And so: there are no definitive answers here. I understand all the sides. I have friends in all camps. I’ve also seen my Nat evolve and my own perceptions of him have radically changed over the years. I also believe that things are not clearly sides at all, that this is one big Spectrum spectrum. There are grays here. There is an entire rainbow of viewpoints. The non-negotiables, of course, is inflicting harm on others. Or using your child without considering his/her feelings about what you write. Or vicious attacks on honest, worthy, awareness-raising posts. Each part has for better or worse contributed to putting autism on the public’s radar. Each group can and should learn from the other.  Let’s hope that that radar remains focused on resources and accommodations and scientific research that helps autistics realize their potential, and helps families connect with — and help, yes, help — their differently-wired loved ones.  Only with balance, bona fide science, courageous open-mindedness, and compassion for all of us will we move forward, faction-free.

I wrote this two years ago.

I’ve been wondering lately if I can become a ghost after I die. I am not looking to die — not at all. It’s just that I have a severely autistic son who is 24 and I can’t imagine how anyone will look out for him the way I do. Even though Nat has two brothers, who are lovely young men — but at 16 and 22, they have begun to grow their own lives. I know they will be there for him in one way or another, but still, it is not the same. I am going to have to depend on the kindness of strangers.

Over the years, I have had to let go of Nat in one way or another. The first day of preschool I sent his father to go with him. I’m ashamed to say, I just could not go. The break had to be clean for both of us. It was anything but. My husband spent the morning out in the hallway, listening to him cry for us, wondering how to help him get through it, knowing that he could not go in. It’s hard enough explaining to a typically-developing child why he has to go to school, but how would we get Nat to understand? It felt like abandonment to me.  I don’t even remember how I spent my day — it is lost to me, as so many of my days felt at that time. I even remember feeling like a ghost when I returned with him soon after this, to our playground, hollow inside, watching the other moms and their perfect kids.

He got used to school, of course, and so did we. But the fear, irrational perhaps, was still there, its clammy breath at my back. I don’t even really know why I was so afraid, but I think it had to do with not knowing how he felt about it. My question — unanswered — is always, “how much of his life does he understand?” If one has such little language, such a choppy processing ability, how can we know what he knows? It is all so raw, a cut inside that just doesn’t heal. I grieve even now that he’s 24, because the limitations and the sense that I have somehow abandoned him never quite go away. I don’t mean to sound entirely gloomy, it’s not like that, either. Nat has brought me some of my life’s deepest joys. His first sentences, first friendships, first job — all of these milestones have been infinitely sweeter because of the long wait, the hope growing cold.

I felt a similar lacerating pain when Nat had to move out, to live at his school. He was nearly 18 then, and people tried to comfort me by saying that it was normal for kids to move out of their parents’ homes at 18. But I was just so ripped up at that point that their logical words just seeped right out of me. Just like when he was three, and off to school for the first time, he had to go. Living with him was threatening to destroy our family. We could not manage his anxiety and he became frighteningly aggressive and out of control with us at times — once, he attacked me at the subway platform and another time he broke a window with his head. But my bond with him never broke. Even when I was scared of him, and terrified for him, I always knew him, I always felt the soul inside. But clearly he needed to live with more structure, with trained people who understood how to help him calm down. But I was sick about it, for nearly a year, crying bitterly every Sunday when we dropped him off again — even though he was improving. I was sure that I’d failed him.

So how can I get my head around planning for my ultimate departure? There is no state mechanism set up to help parents like me, no bank of trustworthy mothers who would take my place. I hear that the state “takes over” if there is no place for the disabled adult to live, but what is that like? I can’t leave Nat’s life to chance. And how does this work for the thousands of others in my position? It is probably somewhat like taking over for aging, ill parents. Except that is kind of a normal stage in life. There has never been anything normal about the way I have had to parent my son. My connection with him, though strong, has always been amorphous, spiritual, heart-to-heart. Our relationship is always present tense, it resides in being with each other, breathing the same air together. But when I’m dead, that connection will be severed. He won’t be able to know me anymore; we won’t be on the other side of the door, or here for him on weekends. Perhaps the most horrible thing about that, my deepest, bottomless fear, is that in being dead, I won’t even be able to care.

Last Saturday night I did not want to cook. I had been good all week, making stupid boring dinner every single day — well not Tuesday, okay, pizza (salad for me) — but I was just lusting for dinner out. Dieting all day. All week. All year. We settled on Cheesecake Factory, can’t be too fancy with Ben and Nat. Cheesecake Factory is middle ground. Large, comfortable seats, fairly interesting psuedo-Egyptian-Southwestern theme going on. No weird smells, food’s always good.

We got there and it was a 50 minute wait that became an hour. We were so hungry, and standing around the mall with the vibrating alarm in hand, waiting for it to come to life. Everyone else hanging around was waiting, too. It was weird — they were all so friendly, and relaxed, and so were we. One family was taking up most of the seating but my knee was killing me, and when the dad got up, I sat down, smiling and apologizing. No problem. Then an old man with a cane came over and I got up. “You sure, Dear?” he asked. So sweet.

By the time we sat down, Weight Watchers had become Wait Watchout in my head. I did not care. I ate and ate. Nothing was bothering me. Ben was happy. Nat was into it. He looked at the menu and said, “Pasta.” As soon as the waitress came over and asked about drinks, he said, “Sprite.” It was just perfect.

We even had a shared enemy — the woman behind us. She was puffed up with Restylane, and her entitled teenage girls were brats, off shopping while their dinner was coming. Who cares, really, but it gave us something to laugh about. The girls even lost the mom’s charge card. “I don’t know!” they screamed. “Well go back and retrace your steps!” the mom yelled, exasperated. We just kept smiling smugly at each other. My boys are so great, I thought. They never shop. Ha ha. Just me.

It was nice to be Mrs. Obnoxious with my grown-up, well-behaved sons. It’s unusual. Often I envy the other tables, families with three little girls, for God’s sake. No, I don’t want girls but they just look so pretty and perfect. My boys are scruffy, big men. Gloriously male. But jeez, how did I get so old?

Well, perfection is only a dream. The false note came when Nat wanted another Sprite and Ned countermanded it. He interrupted and told the waitress no, treating Nat like a child. Okay, Ned is his father and does have to protect Nat to keep him healthy, but still — Nat is 26. I whispered to Ned: “Next time talk to Nat about how it’s probably too much sugar, suggest water, rather than speaking for him.” Ned nodded. “He’s a man, after all,” I said. “You wouldn’t do that to Max.” Inside I burned for Nat being patronized, even by his loving father.

Later that night I had a dream that Ned was making Nat eat a potato, uncooked. I told Ned the next morning and said that I didn’t like how the Sprite incident had gone, and the dream was about that.

The sad thing or maybe the happy thing is that Nat moves on. Is it because he’s used to being told what to do, or is it because he’s not oversensitive like me?

Well, there’s always a spot that mars the perfect surface in this life. So sometimes you just have to fix the hurts with treats. That’s what I do. Food = love in my sweet family. And when it came time for dessert, I insisted we get the Chocolate Tower Truffle Cake and a coconut chocolate cheesecake, dammit. Forkful after forkful of the creamy sweetness, your teeth sink in just right. Let it spread like frosting over your dear heart, my Nat. And Ned, who probably felt bad about what he’d done.

I didn’t even feel sick after. It was just enough — too much is always enough.

I don’t know, the outing was just so unexpected. Usually Ben doesn’t want to go, Nat is sloppy and eats too fast. Ned gets grumpy waiting for the check. I get stressed out about which is the least fattening entree. I then order the wrong thing.

Not this time. We just went in as ourselves — and it was as (almost) as smooth as that cake.

My latest piece is on the website MariaShriver.com. It asks, “what makes a life worth living?” Enjoy!

On New Year’s Eve, my son Nat drank some spiked lemonade and passed out after midnight — from exhaustion. His roommate John texted me the next day to tell me. I don’t know if there’s ever been a time in Nat’s 26 years of life when I have not been worried about him, but when I heard about Nat drinking, I was not. In fact, I was happy. This felt like a rite of passage. Nat partied with friends on New Year’s Eve.

I am not as odd as I sound. Nat has fairly complex autism, and so his social development has been hard-won. So even a night of drinking might actually be cause for celebration in my family.

Most of the time I need to read Nat without words,  through a combination of watching his body language, and listening to his very quiet unintelligible self-talking. When those strings of Nat-words first emerged in early childhood, they seemed to loop and coil in the air, playful, joyful, and we called it “silly talk” — a deceptively lighthearted term for something I actually feared like a disease. Surely this was a sign of deep disability, far worse than we had realized when he was first diagnosed. And it was a call to arms for me. I had to get rid of it, or he would never be okay.

This began the long hard era of battling autism. Nat’s teachers at the time exhorted us to engage him, as much as we possibly could, fight for him, keep the dragon at bay. Interrupt, channel, redirect these impulses of his, dam up the ever-opening tributaries of aberrant, abnormal behavior. Our kid had to be forced into normal, or else he would be lost.

And so, raising Nat was exhausting, debilitating — for me, but far worse, for him.  What is a child to make of always being given the message that he is off somehow, that every sound that comes out of his mouth had to be caught by watchful Mommy, and pummeled into something else?

I don’t know when the light went on in me, and I realized I could stop. “It” wasn’t working, anyway. Silly talk will out. And what a relief it was to finally understand that, and to let go of all the fighting. Suddenly I knew in my core that yes, my job as Nat’s mother was to help him be the best he could be, to educate him about how to act in the world, but my main purpose was to let him be who he was.  One way that I could help him do that was to arrange for him to live away from me. Since the age of 17 Nat has had roommates and caregivers, and I have been a visitor in his life. His teachers and caregivers took over from me the work of teaching him independence.  This positive development has been heartbreaking to me, though, because a part of me still fears that I am doing wrong, that I have to be the one in charge of who Nat is.

Every now and then, though, I understand that the truth is, I don’t. When I get happy news from John, who is also his caregiver, I realize that with or without “normal” words, Nat is his own man. I’ll drink to that.