Below you will find a new PSA campaign to End the Word (raise awareness about how pejorative is the word “retard.”), and it should air tonight around 10pm. Remember, this is not about PC — although to tell you the truth, I am sick of PC-bashing. What the hell is wrong with being mindful of how ones words can be used differently? If I didn’t believe in the power of words, I would not be a writer, after all. This campaign is about getting people to think. You are still free to speak however you choose, but just know that if you use the word around me, you’ll get an earful.
Special Olympics is not perfect, but it never claimed to be. In fact, the beauty of SO is that it began without a plan, just an idea in one mom’s backyard. Aimed at people who also were thought to be far from perfect, SO has taught me that the only place we find perfection is in love, acceptance, and doing our best. Click on the link and you will feel it, too.
A Story About Gardening, Autism, and Other Messy Business.
By Susan Senator
Late February: Frozen Ground
“Eye, heeem,” Nick said. He reached up and touched his open eyeball, and blinked at the unexpected jolt of pain. The pain spread, flashing red light everywhere. He could feel the sharpness opening outward and he silently endured it, waiting for it to subside. There were no sounds in his throat right now and he was glad. His noises made Mommy talk to him, and there were always too many words itching deep inside his ears.
A few moments later, there was only a soft ache behind his lid and he opened his eyes. They were clear again. He looked skyward, and his eyes followed the rays of the sun to where they hit the porch door. He liked the way the sunlight slanted when it went behind a cloud, like an eyelid closing. He closed his eyes and rotated his head until he almost couldn’t see it. The light became a tiny ribbon, shining across the back of his eyes. Happiness coursed through him at the beauty he was seeing. “Heee, light,” he said quietly. Every now and then, his own words appeared to him and he could say them. Letting them out was like bubbles popping, like the ones Dan used to blow. They popped, a tiny sound that he liked; Nick felt he could hear the tiny click each breaking bubble made. Also that was how words came out of his mouth: a sudden, round pop in the air.
It was Mommy, and her line of words flew past his ears, like a sharp, stinging wind. He shut his eyes so that she would stop looking at him.
“What. Happened. To. Your. Eye.” Mommy said this the right way, with spaces of air between the words. Nick loved air. He liked to squeeze it with his hand, open, shut, open, shut.
Mommy was very close now. He could smell her skin, which he loved. It made him want to sleep. He knew she was waiting for him to talk, and his stomach squeezed itself. Then he realized Mommy was saying a lot of words again. He felt them rushing up to him like water, and enjoyed the sensation, without trying to break them into words. He closed his eyes while she talked, rat-tat-tat like when it rained hard:
“I know you won’t like this, Honey, but I have to look at your eye to see if it’s okay.” She approached him slowly, and Nick felt her pry open his lid. “It looks okay, just red,” she said. “You must have gotten something in it and rubbed it too much. Try not to rub your eyes, Nick.” Mommy let out a big gust of air and tilted her head, still looking at him. Her eyes were so big, and he could see that shadow in them. He knew the word for this: “sad.” He would never forget that word. He saw it passed over Mommy’s eyes, like the cloud and the sun. He hated that because it always spread into him.
Once she saw that he was okay, Emmy reached out to give Nick a kiss but then thought better of it. A kiss would feel good to her, but not to him. Nick suffered through kisses and hugs, but never offered them himself. She sighed, breathing extra deeply to suck in the cold air so that it might freeze the flare-up of sadness before it got any worse. She walked through the garden, back inside the house.
She hadn’t noticed it before, but it looked like a wild animal had been let loose in there. Henry’s junk was strewn everywhere. She started gathering it into a pile for him, so that she could walk more easily through the living room into the kitchen. She found herself staring at a notice that had been stuffed into Henry’ backpack. Henry, although newly fourteen, still did not mind his mother going through his backpack, or cleaning his room; at least she thought he didn’t. Her hand pushed aside a half-pack of Juicy Fruit gum (were they allowed to chew gum in school these days?), a crumbled lunch bag, a rubbed-raw binder with Green Day written in big letters and then “sux” in Henry’s handwriting right beneath it. Finally she seized on the usual small pile of flyers and sifted through. An offer for cheap tickets to several performances: Boston Ballet; Flying Karamazov Brothers; Alvin Ailey. She tossed it.
A torn note, written in smeary gray pencil. Henry’s handwriting. It said, “play structure — J.” The rest had been ripped away. Emmy suddenly felt a pang; guilty to be going through his stuff, she supposed, because this was obviously personal business of Henry’s. Henry’s secret life. She smiled, thinking of him and his messy head of hair. She was so proud of his emerging independence, achingly proud. She embarrassed him with her overflow of love, she knew that. It was hard to control, hard to get things right with a crabby teenager.
She put the backpack away, and walked back to the window to watch Nick. He was standing still in the very center of her brown, dead garden. The tendril of sadness unfurled, fully this time. She had thought she was long inured to that kind of pain by now. Nick was fifteen, after all. Why was she still susceptible to sudden waves of grief?
copyright, May 2011, Susan Senator
It’s different. Of course it’s different. And here’s how: because I don’t know what he knows. I don’t know how he understands things, and that is a very unfair thing. And that is why I think I will always be a hovermother.
We tried another House weekend this time. It was bad timing because the House staff did not have him call for several nights last week and I was out other times. I did not get to connect. I hate that. What does he think of that? Does he care? How far in does it go? Or is it like Max or something, he notices but he’s okay, because he’s Whole?
No, I’m not feeling sorry for myself, and if I am, why the hell should that matter? Why are we all so set on being Strong? What is disgusting about being weak, or sad? Goddammit, I am so sad. I am supposed to be letting him get used to the Adult World (sorry for all the upper case, but that is how the words seem to me). This is not something I am being forced to do, so please don’t tell me that I don’t have to. If you do I will not print your comment. Do not tell me, because you don’t know. Ned and I are doing this. We are doing this. And I hate it.
And just because it makes me sad doesn’t mean it shouldn’t happen. But I am not like others who can tell themselves truths and then move on. I don’t know how they do that, how they convince their feelings to behave, to go away. I can’t. Mine just hang around, clinging to me, telling me what is real anyway.
My sadness is real, and Nat’s adulthood is real. He is at the House, he doesn’t always get to call, and I don’t always get to call. My other sons live their own lives and sometimes it feels like Ned really does, too. And then it feels like I’m the only one living and thinking about Nat.
In some ways, I wish I’d never let him go. Anywhere. Back when he was first diagnosed — “diagnosed” makes it sound like they determined that he was sick, but he was not, he was still Our Nat, but he now Had Something. Something he’d had along, but we didn’t know, and why did that have to matter?
Sometimes I wonder, stupidly of course, why does a person have to go away? If he’s just not ready? What the fuck is Tough Love? That is an oxymoron.
Back then, I was told, like I am today, that he had to go. He needed school, not his home all the time. It was home that was not doing for him what he needed.
But home was me. And Nat at home was our reality. If I sent him to school, then didn’t it mean that reality had shifted, and he was what they were all saying he was? I still can’t help it, a part of me feels that They changed him, with their stupid diagnosis and their special education. They made it real by calling it a name.
Shit, I’m sitting here writing and crying. Really, really quietly, pretending I have a sniffle. Max is right next to me, working on something on his laptop. Does he know I’m crying? Is it just “Oh, there goes Mom again with a mood swing.” Or what? I don’t even know what his reality is, but you know, I really do know enough what it is, because there is feedback I can understand.
Why do Nat and I have to speak a different language? Why is mine so word-heavy and his so much movement and silence?
So we all decide it is time for him to start dealing with change because 22 looms large and ugly. There is no clawing it back to what it was, no matter how much I pull at it. Just like school, it is just ripped away from me. But I don’t heal.
I’m going there today to take him out for ice cream.
We have a video of Benj, from the time that he was born through 11 months. We would just pick up the camera, shoot for a little bit, and then put it down, catching bits of Benj, Max, and Nat over the course of 1998.
One of the segments is a quiet moment in the diningroom, our old house, the yellow one, before this one. The diningroom there was beautiful. It had gray walls with cream trim, and there were french doors that opened out onto a tiny garden. The camera zooms in on eight-year-old Nat, standing before the stereo in there, while Raffi sings, Thanks a lot; Thanks for all I’ve got. It’s just Nat in the room, and I am holding the camera on him. I say, “What are you listening to, Sweetheart?”
And Nat turns around, and his eyes look like a hunted deer’s. He has big buck teeth, and he is holding his hands out, with his fingers splayed, as if he’s in pain. “Fanks A Yot,” he replies, and he thrusts his fingers from both hands into his mouth. I continue filming him, and he says, “One-two-free, go!” which was his way of telling me to finish filming and leave him alone. I can hear myself giggle behind the camera because he is so clear in how he doesn’t want me there, and so cute. “Okay, Sweetheart,” and the camera shuts off.
Tonight Ned referred, laughingly, to “Fanks.” I laughed, too, but then I also remembered Nat’s wild, haunted look back then. Suddenly it was like I was there, seeing him like that, but out of my current eyes. He was so stressed out, I could really feel it now. But I also remembered how I felt then, with such a tenuous hold on Nat. Back then he was beginning to be aggressive with us, and certainly withdrawn. His fingers were often splayed but also crossing each other. A picture of discomfort.
Back then I was so concerned with controlling him. I was so scared of him, so scared for us. Where was it all going? What was he going to turn into? He was already kind of wild. Feral, with those teeth and eyes. So alone, snarling in the corner. And all I could think back then was, “Make it stop.” I was in pain, too, because my family felt so defective. We were falling apart, it felt like. I had this new baby, but I couldn’t provide him with a safe, secure family. And my Maxie was already learning to be careful, so careful. I just needed all the bad to stop.
I wish I could have done a better job, better than damage control. I wish I wasn’t just maintaining, staying afloat, only finding tiny moments of pleasure behind the camera, filming him but not helping him.
I don’t think I ever thought, “Oh, Natty, come here, sit down with me” the way I would now. I had no idea I could talk to him that way. But maybe back then I couldn’t. Maybe he and I have both grown up and changed. He doesn’t get that wild look anymore. He doesn’t splay his fingers, he just walks faster and talks it through to himself.His eyes now are rich blue, always, and they are opened out to the world, to me. He sees us. He notices things.
How did he get to this point? How did he shift from being so scared and bitey, to this capable young man? Was it a slow evolution, tiny milliseconds of progress undetected by the human eye, or sudden jumps, moments of flashing revelation? I guess it was both. Fits and starts, periods of pain, followed by the joy of relief.
And now he’s gone, living in the school residence. This was not a Home weekend, so I haven’t seen him since Sunday. I still worry that he’s not happy, stressed-out by unknown forces. But I have no real reason to believe that. He has a lot to do there, both fun and productive things. They went into Cambridge today, a bunch of them from the House. He didn’t call tonight, and I miss him.
Every so often I get filled up with happiness and it’s gotta go somewhere. I try to make it tangible, to articulate this joy because I love to think in words. So I make these lists I call “Keys to the Universe,” of things that make me happy, whether mundane or poetic. Things or activities or dynamics that are no-fail, from the superficial to the significant.
I think we should all create these lists every now and then, just as reminders that there are good and great things in our lives.
1) A hard bike ride that turns out to be easy.
2) Alleve muscle relaxant.
3) Paul Simon’s song Graceland.
4) Turning the corner on Clovelly Road.
5) A “yes” from the Washington Post.
6) The three sons I’ve created in my novel, Dirt: A Story of Gardening, Autism, and Other Messy Business.
7) Ned’s face.
8) My new bike shoes.
9) Boca burgers, the flame-grilled ones.
10) Hot shower
11) Great nap
I have really been thinking about this different set of standards we have for disabled people. We think that we have to handle our guys with kid gloves. This weekend I was with my family at my childhood home in Connecticut — as enlightened and loving a group as there can be — and I was struck by how it was still difficult for some of the family to address Nat directly about things. “Just ask him,” I kept saying to people.
People in general are skittish around Nat, and I can’t blame them, he has been volatile in the past. Plus you don’t want to have an interaction that falls flat; it just doesn’t feel good.
But every day it seems that I am seeing more and more of Nat himself. Nat, without limits. I am seeing him fully, without a barrier of assumptions. Just him and me. I find I explain things to him assuming he understands a good deal of what I’m saying, even though he seldom answers, and if he does, it is with this baby-talk kind of simplicity. When someone is as adorable as Nat, it is difficult not to let that fact take over how you treat him. I keep saying to myself, “He can’t help how his speech comes out. He probably doesn’t feel satisfied with the way he talks. Imagine how that must feel.” So I don’t want to add to his potential unhappiness, by talking down to him.
When others talk down to him, not realizing what they’re doing, I feel so bad for him now. For people to talk about him in front of him: it makes me want to cry. How patient he is, to put up with that. How frustrated he must feel, to be aware of his difference, his clunky tongue and knotted words, and not to be able to set people straight. To feel compelled to talk to himself, unable to break the habit because it feels so good, but also to know on some level that it sets him apart from everyone.
The torment of having an autistic child is not knowing what he knows, so you don’t know what level to interact. And you don’t know what to hope for.
More and more, I am talking to Nat without adapting anything. Yesterday I got him to calm down over something very upsetting to him — my brother in law was wearing a sports jacket, and to Nat this looked like something you should only wear outdoors. I had him sit down next to me. I watched his visible efforts to get this not to bother him, but he couldn’t. He covered his ears, wrung his hands, walked and walked, muttered about “outside,” and was just so unhappy and frustrated. I watched him running around. Other family members watched, too, but I don’t think they understood how I could be bursting with pride. For I could see how he was struggling so hard not to escalate. You could see it in his panicked eyes, his busy hands, his stomping.
He did not escalate. But he needed help. And I knew that and I stayed with him. Finally I found a photo on my parents’ fridge, of my brother-in-law in a sports jacket at an inside event! Nat relaxed soon after that. And now he knows. Because I talked to him and he understood.
I was having dinner with a friend tonight and we were talking about the various autism programs around the state and their philosophies. This friend is a colleague from the disability advocacy community, and he has had decades of experience with all of the programs and players in the adult disability community. He has helped me plan for Nat’s group home, and he has explained all of the issues and challenges I have to confront to make this happen.
We were talking about how autism school founders are very passionate and forceful personalities — they have to be to do what they do — but that sometimes the schools end up being too dogmatic for anyone’s good. Nat’s school is a terrific program, but their flaws are that they are too afraid of lawsuits, so they are too risk-averse; and that they are too invested in behavior modification.
But parents do it, too. Risk aversion may not sound like a problem, but without risk you cannot have growth. You have to be able to assess a person’s abilities and potential, as well as the moment and circumstances, and then try it if the difference between the former and latter are not too great. You have to try things in order to open up your world. You have to be willing to fail in order to succeed. It’s a cliche for a reason.
Nat learned to ride a bike independently because I let him ride around the block, away from me. I couldn’t help it; he just took off. I had to pray he’d be okay. But I had a lot of evidence to let me feel that he would be. Why not? Just because he’s disabled doesn’t mean bad things will happen to him more than if he were not. And didn’t I feel just as terrified the first time Max got behind the wheel of a car? But I still let him practice driving. Risk needs to happen with our disabled kids, just as it needs to happen with our non-disabled kids.
We say, “Well, it’s just different with my autistic kid. I can’t explain why.” You know what? We have to explain why. We have to get to the bottom of that. Because we might discover that it is irrational to feel that way. There may actually be no real reason that the autistic child gets the kid gloves and the normal kid gets opportunities handed to him.
Too much of any one philosophy is probably too limiting. We are human and we get sick of things. Stuff loses its efficacy. You need to change it up sometimes. You need to step outside of the lines once in a while. And so I remember a couple of times when Nat’s school and I bumped up against each other, and I just wanted to write about it so that maybe a reader or two can learn from this. The first time we disagreed was when Nat was having a lot of outbursts of aggression. I wanted the school to deal with Nat in their way, which was why I was sending him there, but I also wanted them to have Nat apologize to the staff or student that he’d hurt.
This being a behavioral school, there was no way they were going to draw attention to the undesirable behavior by having Nat apologize: “I’m sorry I hit you.” That would cause him to focus on the hit and to see that it was a big deal to that person, something that got attention and potentially become something that was therefore rewarding to him. But, I would argue, Nat needs to learn real-world behaviors and consequences; he needs to know how to apologize. He needs to understand that his actions have an effect on others. Now Nat apologizes. Not only that, he tells me when to apologize, by saying, “I’m sorry I yelled at you,” if I yell at him. That is a beautiful thing.
Peter Gerhardt’s message about autism and sexuality is revolutionary in its very simplicity: Sexuality is one of the most basic elements in our lives, and is inherent to what it means to be human; sexual behavior is one of our most vulnerable areas of our lives; and sexuality is a basic human right. Therefore, it is of the utmost importance that we educate our autistic loved ones in appropriate sexual behavior to that they can keep themselves safe and happy.
Peter spoke yesterday at the LADDERS Conference in Massachusetts. He made it clear from the beginning that he is not talking about people having sex, but rather, he is talking about sexuality as a defining and human characteristic of all of us. Sexuality and sexual feelings are so basic, so important, and yet, there is very little literature or research out there as to how to teach people with autism how to behave appropriately in terms of their own bodies and other people’s as well. This was not to be a talk on how to or whether to… but rather, what every human being, on the Spectrum or not, should know about safe behavior.
Stunningly controversial and yet utterly necessary. So difficult to talk about, to think about, and yet, what do we all want for our children: to be happy, to be safe. What do we do towards that end, given that sexuality makes them so vulnerable to, frankly, disaster? Peter and other experts suspect that somewhere around 60-80% of folks on the Spectrum will experience some form of sexual abuse in their lives. This doesn’t mean rape necessarily, Peter pointed out, but that, too, is in there as a possible danger.
The lack of information is astounding. There is nothing written on teaching ASD women about menstruation. Nothing. That means that every parent of every ASD girl has to wing it.
On one hand, we as a society are so out there when it comes to sex. Peter pointed out how fascinated we are with sex — hundreds of slang words, Internet obsession with sex, debates about sex education in regular classrooms, teen pregnancy — and yet how telling that for some of our most disabled people, we are utterly silent. What is implied by society’s attitude here, the silence, the lack of info, is that a) people on the Spectrum do not experience sexual feelings or b) people on the Spectrum can’t be taught about sexual appropriateness.
Wrong and wrong. We may not enjoy the task, but we have to be able to face and talk about our ASD children’s sexuality as something real, natural, and in need of guidance. Peter made the point several times that whatever we have statistically in the neurotypical (“normal”) population, we can assume that we have in parallel in the autism population. That means there is homosexuality, fetishes, fantasies, transgender issues. We just don’t know about it. The feelings are there; but because of communication disconnects, we don’t know about it and many on the Spectrum cannot express it.
I wish we could have a Public Service Announcement about developmental disability that says something like this: Autism: Everything you know about it is wrong. Start from there. Look at all of our assumptions as just that: assumptions. Autistics, no matter their functioning level, are full human beings and all that entails.
Does that scare you? Does it sadden you? Okay, then, deal with that. But do not make the terrible mistake that you don’t have to help your autistic kiddo understand about his body and safety, because you are asking for trouble of the worst kind.
So what do we do? Peter has what he calls The Five Year Rule: always think ahead to what things we will need to have in place five years from now. If the 5-year-old is running around the beach naked, we want to be sure he doesn’t do that at 10. If an 8-year-old is touching himself in the classroom, we want to make sure he understands that he cannot do that there and then when he is 13. Or 15. We may have to start teaching him time and a placet now, if he is on the Spectrum, because the longer difficult behaviors go on, the harder they are to redirect.
Keeping the ASD child’s future in mind, we need to also think about how to teach what they need to know, given their particular learning style. If you have a person who is a concrete learner, a black-and-white thinker, then you’d better be sure that you are being clear and literal. Do not put a condom on a banana and expect someone to be able to generalize this to their own bodies. Use realistic photos, real words. Keep the message simple and repetitive. Peter even advocates allowing some silliness into the conversation, to break the ice.
Teach about what Peter called “The Circles of Comfort and Safety:” who is in your life and what is their role? The innermost circle is family members, loved ones, closest friends. These can help you with personal needs like bathroom help. Next circle, friends, cannot help you with that level of need. The Circles illustrate who can and cannot touch you, even on the arm or the head. It is all very well-defined.
You have to think about precisely what you don’t want to think about when you are a parent: what your child needs to know when you are not there to buffer him. You need your child to know to lock the door of a bathroom stall. You need your child to know how to say “no” in one way or another. You need your child to know that masturbation itself is not a crime but that it can only be done in the privacy of ones bedroom: appropriate time and place. You need your child to know who can help him and who should not. If we use pictures and words that are not symbolic, but rather, visual and accurate and direct, we will probably succeed to some degree.
If we don’t know how to teach this, then we parents must start learning. We must start demanding of our professionals that sexual safety goes way beyond identification of body parts. Sexual feelings and sexual safety are a basic human right, for all humans. The first step towards helping our autistic children lead whole, happy, and healthy lives in general is to end the silence and embarrassment over this topic.