Susan's Blog

Friday, December 25, 2015

Christmas Story

You can listen and read my story from Tom Ashbrook’s “On Point” show here. My story is about taking Nat to my in-law’s Christmas dinner, and a sweet thing that happened as we were getting ready to eat.  Merry Christmas!

Tuesday, December 15, 2015

Slow down. Just stop.

Recently while getting on the checkout line at a local supermarket, I sized up the backlog of items on the belt and the cashier and the packer — as I always do. It was around 3:30 in the afternoon, the last of the winter light thinning out, and the traffic outside was picking up. I was starting to feel the weight of the evening ahead sinking onto my shoulders. I wanted a quick checkout. The cashier had bright brown eyes and a cheerful round face peaking out from a head scarf. She had a strong smile and confident eye contact that told me all I needed to know. This was a good line to be in.

But then I saw the packer, moving as if in slow motion. Her mouth was slack on one side. I heard her explaining something to the customer ahead of me, something that did not need explaining. Ohh, I thought. Disability.

But, yeah, I have a son with a disability who also works in a supermarket, and I wanted to give this woman a chance.

My checkout went quickly, and before I knew it I was burrowing through my handbag for my wallet while the packer laboriously loaded my two bags. I was just writing the amount in my checkbook when I saw her hoist the bananas into the paper bag already stuffed with boxes of lettuce and the pineapple chunks. The bananas sat uncomfortably perched on the lettuce and started to tip. I reached out and quickly set it right, but the paper handle tore and the whole thing fell on the floor. She and I watched and waited for the disastrous splat. As the round plastic container of pineapple wheel to a stop, I knelt down and started stuffing everything quickly in to the ripped bag, while the packer exclaimed over and over, “Oh, no! That was my fault! I should have listened to you!”

I hadn’t actually said anything except maybe to murmur about the heavy bananas being tricky, but she was just horrified at herself. The more upset she got, the calmer I acted, determined that this would not be a problem. I said, “No, don’t worry, everything’s fine. Look,” and I gestured with the lumpy bag in my arms. She remained unconvinced and sad. I said again, “It’s fine. No worries,” and I walked out struggling with the bag, pretending I wasn’t.

I got to my car, with a prickly anxiety catching on my thoughts like thorns. What would happen to her? Would there be trouble? Probably not, because the store had to know about her challenges. And also because of me. I had tried to make the whole thing look like nothing, when really, as checkouts go, this was not that great. To have the customer fix the packing job, and then kneel down on the floor picking up her own groceries. To let her leave with a torn bag. In that little supermarket world, this was bad stuff.

And what if the customer hadn’t been someone like me? I got to thinking about the way the world is, beyond those automatic doors. People want things just so. We are all in a hurry — but to get where? Nowhere, really. Almost everything can wait, when you think about it. Yet we tailgate each other on the road bearing down on our horns, when we’re just trying to get home. Which can wait. Or to work, to an appointment. If we’re late there are consequences. So we have to be obnoxious, because we’re all a big bunch of dominoes. One tries to stand still, but then another one knocks into us. We just can’t stop. We can’t stop our twitchy brains or our wiggly fingers from pulling out the phone and tapping away. We are like sharks, we have to keep moving. Even sitting at a stoplight we have to do something.

We are a society that cannot slow down and breathe. We don’t allow ourselves to think. We expect everyone to move at top speed, ultra competent, no mistakes. But where are we all going? What is all the rush and rage about?

The days are growing shorter. Our hearts are racing, our teeth are gnashing.We say that this is the world, though. it’s a tough place. We have to live in it the way it is. Sink or swim.

But I think it can be different. We can slow down.


Our packages may burst. So pick them up. Because, really, we should be bursting. With joy. That we are even here, alive, today.

Monday, December 14, 2015

Book Me!

I’m now getting book signing and keynote offers for spring 2016 for Autism Adulthood, my book that will be out April 2016. Please let the disability/autism organization you love know that I am ready, willing, and able to do powerpoints, formal keynotes, informal talks, workshops, and readings. My topics are Autism and the Family, Autism and the Pursuit of Happiness, and of course Autism Adulthood. You can email my publicist Ashley Vanicek,, or me directly: to make arrangements and to find out specifics about what I do.

Wednesday, December 2, 2015

The Rise of Individual Nat

I feel proud — probably smugly so — of my sons’ personalities and consciences. They share most of Ned’s and my values (caring about family, being kind and generous, trying to be a force of good in the world) and so I feel like we did the right thing by and large, working so hard every moment to teach them right and wrong. I know, however, that I get obsessed about my children. I know that my generation of parents is like that, though; it isn’t just me. In grad school I remember studying various theories on the evolution of the family — this professor’s particular bent was that the family is a social construct and it’s different everywhere, in every era, and social class. The research that stood out the most for me was Princeton historian Lawrence Stone’s, which theorized that affection and attachment, and the lavishing of attention on children did not occur in England until the 18th Century.   In addition to keeping children alive long enough to bond with them, the British middle class was doing very well economically. According to the Journal of Social History, Stone also found that the bourgeoisie was marrying often for love, rather than economic or property considerations. Stone called this “the rise of affective individualism.”

I bought Stone’s ideas, and so I know that my attitude towards my boys is not something shared eternally and everywhere. I especially remember watching my peers with their babies, back in the 1990’s when Max and Nat were little. So often I felt angry at the other parents for being lax, for letting “Little Precious” do anything they wanted — even if meant letting them take Max’s shovel right out of his fat little hand. I’d hear a lot of rationalizing from these parents; one even said to me that Max had to learn to be more assertive. Actually, another said the same about Nat. For years I thought it was Nat’s autism that she was scolding, and that was highly unfair. But now I realize that Max was blamed equally for, essentially, being the victim.

I suffered for my gentle children, even while I continued to reinforce high standards for them. They weren’t allowed to hit, they weren’t allowed to mess up a room without taking some responsibility. But my end of the deal was that I wouldn’t just sit on the couch and bark at them, nor would I hit them. I had to be off the couch as much as possible, on the floor with them. Guiding their language, their values, their morals. Calling them out for anything unkind or violent.

So maybe I was the Queen of Precious Children, after all. But I don’t really think so; my purpose was to teach them to be moral, ethical people, never cruel, always thinking of their actions. The lazy laissez-faire parents around me did not seem to realize that their goals for their kids had to be reinforced as much as possible. Every little interaction was potentially a teaching moment. It sounds tiring, and tiresome, and maybe I was. I know I was tired a lot, and did not have many friends when the boys were little. There were so few parents I could even stand to be around, because of the way they did not take responsibility for their kids’ behavior.

The first live theater we took the boys to was The Lion King, when they were around 2, 8, and 10. I remember seeing all the likely typically-developing kids around us misbehaving during the performance, with total impunity. I don’t mean that they should have been punished, I just would have liked for their parents to have given a shit. And there I was, antennae stuck way out, attending to everything Nat especially did because I wanted to be sure that he did not get away with “bad behaviors,” that clarion call of shame to so many autism parents.

It occurs to me I have had extra high standards for Nat because of my fear of public shaming.

It’s only later in life that I have learned to give everyone a break. Especially Nat. I now know that sometimes It’s the Disability, Stupid; and other times It’s Just Him Being Human, Stupid. Sometimes I need to separate what he can’t help because of autism and sometimes it’s what he can’t help because he’s simply having trouble.

Even in my first book I was certain that at age 2 1/4, when Max was born, that Nat’s autism was finally fully unsheathed, as was evident by the way he would cry and cry everywhere we went, stay in the stroller and not play, refuse to go to new places, refuse to be soothed. In my writings and in my talks all of that was Manifestations of His Disorder, and how I wished I had known what to do then.

Recently, however, I was remembering how another bout of Nat’s difficult behavior spiked when Ben was born, too. So much so that he was expelled from school, all of our caregivers quit, and we were afraid of what he might do to us. We all scratched our heads in bewilderment, wondering why, why, why. Was it the change of seasons, the lack of daylight? Was it preadolescence? Was it his diet? Was it behavior we had to crush with Neutral Ignoring and Rechanneling, While Looking For Moments To Reward Him for Good Behavior? Sheesh.

I had a flash of insight just a few days ago. Both difficult periods occurred when Nat’s baby brothers were born.

All my vigilance, obsessive wondering, suffering to figure out how to help and work with this difficult autism, and perhaps, just perhaps, it was all about Nat trying to adjust to having siblings. Imagine having a language and communication deficit and sensory overload and trying to adjust to someone else being on Mom’s lap, all the noise of babies, and CHANGE. Through my broken heart for my little Nat, struggling just as so many other kids do, for the same reason, I could also feel some relief that I was now seeing him just a little more clearly than ever before. And what I was seeing was just a boy. An individual, a good person despite difficulties, whom I could be proud of, love, and understand (eventually). Well, better late than never.