Archive for Parenting

The Vividness of Memory

August 24, 2011 Rachel Modes of Thought, Parenting

On September 16, my daughter will fly to California to begin life at UC Santa Cruz. These days, I find myself reliving much of her childhood in my memory: The rainy winter night we brought her home from the hospital as a newborn. The January morning she stood up in her crib in our room in Paris and patiently waited for her dad and me to awaken. The bright summer day we went bicycling in the Green Mountains. The crisp fall morning we started homeschooling.

I can remember everything in vivid and brilliant detail: The green and gold striped jumper I dressed her in before bringing her home for the first time. The pink and teal portable crib, and how we lugged it across the country from California to Connecticut, and then to Paris and Amsterdam. The Paris light. The sandbox outside Notre Dame. The baseball shirt and helmet she wore biking. Our excitement sitting in her room on the turquoise carpet, beginning our lessons on her first day of school.

My recall has always been very vivid. A photograph can awaken a whole array of visual, sensory, and emotional memories.

I have a photograph of my mother standing outside the door of the house I grew up in. It is 1966. She is standing in a sundress on the landing, leaning against the railing. My brother appears behind the screen door. He is five. Whenever I look at that photograph, I feel as though I could simply walk through that screen door and everything would be as it was. My parents, now passed away, would be in the kitchen drinking instant coffee, and my brother and I would decide what game to play, or whether to go down to the drugstore for candy and baseball cards. I feel myself there, a girl of eight or nine, innocent and hopeful about everything to come.

Lately, I’ve been feeling that my capacity for such vivid recall is a mixed blessing. On the one hand, it’s as though no part of my life is ever really gone. I can go back in a moment and relive the memory as though it had happened just a few minutes ago. I can see it, smell it, taste it, feel it. On the other hand, there is the jarring moment when I realize that it’s gone and that I can’t go back, not really. Is this why I’ve taken so much for granted about time? Is this why I’ve always felt that things would go on forever — because they seem to go on forever in my memory of them?

Until yesterday, I’d always believed that everyone experienced memory in this way. But when I described the way I remember to my therapist, she was amazed. She kept saying “Wow!” with a look of intense surprise, as though she’d never heard anyone describe memory in the same way.

The way I relive my memories is why I can become very emotional about events and people from the past; the memories don’t fade into obscurity. Old events can creep up on me and give me great happiness, or deep pangs of regret, or tremendous sadness.

These days, I’m painfully aware that all of my vivid, precious memories are in the past. My little girl is no longer little. She’s no longer even a girl, but a young woman. And while I am excited to see her begin college in a beautiful place that we both love — and while my vivid memories of my own college years only add to the excitement of this moment — I’m also sad to feel time passing, and to know that so many things will never come again.

New things will take their place, certainly. But I loved the old things. And I still do.

© 2011 by Rachel Cohen-Rottenberg

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For the Young Literal Thinker: Good Children’s Books about Idioms

July 27, 2011 Rachel Childhood, Literal Thinking, Parenting

A few weeks back, my post On Literal Thinking was republished on Shift Journal. In response to it, a commenter made the following excellent point:

I wonder sometimes if all the anecdotes that describe autistic children as literal thinkers may be creating a self-reinforcing stereotype. Any young child, whether autistic or not, who had never seen broken dishes wouldn’t know how fragile they were. The child might reasonably assume that if she had been told to toss them, they must be made of something that wouldn’t break, just like a rubber ball or other toy. In most families, if that happened, nobody would think much about it after the mess was cleaned up. But if the child happens to be autistic, the story ends up on the Internet as an example of literal thinking. That leads to more parents of autistic children posting such stories, and so forth.

She’s right about the dangers of some of the anecdotes that make the rounds on the Internet; after all, not everything an autistic child says or does is atypical. But in this case, there is a difference between the way an autistic child and a non-autistic child might respond to an idiom that he or she has never heard before.

In the example in my post — about a mother asking her daughter to “toss the dishes” into the sink — the child was definitely old enough to know what happens to dishes when you throw them. My guess is that the literal meaning took over in the child’s mind and got in the way of practicalities. When I look back on my neurotypical daughter’s early years, I have no memory of her misreading an idiom in that way.

In fact, I don’t remember her taking idioms literally at all. If she’d never heard the expression before, she’d probably look at me and say, “Mom! What are you TALKING about?” So, for example, if I told her to “shake a leg,” she wouldn’t just shake her leg, as an autistic child might. She’d know that the meaning was figurative and that she didn’t understand it. Similar anecdotes about autistic kids usually don’t reflect that understanding.

The whole conversation got me thinking about a couple of children’s books I once bought to teach my daughter about idioms. They were on one of the homeschooling curricula that we made use of, and they turned out to be a lot of fun. It occurred to me that the books might come in handy for parents who want to teach their autistic kids what idioms mean and how they work, so I thought I’d share a little bit about them.

The ones we have are called In a Pickle and Mad as a Wet Hen, both by the wonderful Marvin Terban. (He’s written two others — It Figures! and Punching the Clock — but since I’ve never read them, I can’t vouch for them.) Both In a Pickle and Mad as a Wet Hen explain common idioms very clearly and succinctly, and both are full of great illustrations to delight the visual thinker. In a Pickle contains fewer idioms than Mad as a Wet Hen, but is still a very useful book. I got them both because, well, the more idioms the better, right?

Here are couple of interesting examples from In a Pickle:

White elephant: A totally useless possession that you’d like to get rid of.
As the book explains, the expression derives from ancient Siam (now Thailand). In days long ago, a white elephant was considered sacred. When the king was angry at someone, he gave the person a white elephant. Because it was sacred, the beast could never be made to work. It would simply lounge about until its owner ran out of money caring for it.

To get up on the wrong side of the bed: To be grumpy
As Terban tells it, the ancient Romans thought that it was unlucky to get up on the left side of the bed. (The Latin word for left is sinister.) So if you got up on the “wrong” side, you’d probably have a very bad day, which would make you grumpy!

And here are two of my favorites from Mad as a Wet Hen:

To pull the wool over someone eyes: To trick someone
According to the book, in the days when judges wore big woolen wigs, a judge’s wig might sometimes slip over his eyes so that he couldn’t see. A lawyer who thought he had tricked the judge might brag that he had “pulled the wool” over the judge’s eyes.

Are you pulling my leg?: Are you trying to fool me?
Terban explains that, in bygone days in England, a robber would use a cane or a wire stretched across the sidewalk to catch a person’s leg. Of course, after the person fell, he was robbed.

Neither book explains the derivation of each and every idiom, but there is enough information in each one to keep things interesting.

I especially like both books because most of the idioms and their explanations are accompanied by humorous illustrations that reflect the literal meaning of each expression. While I tend to think in text, the text usually brings up a strong visual image, and reading these books sometimes feels like looking at a (very stylized and artistic) reflection of what goes on in my own mind. So, whether your child is a text-based thinker, a visual thinker, or both, these books may very well reflect the ways in which his or her mind works and, as such, may provide a good introduction to the world of idiomatic meaning.

© 2011 by Rachel Cohen-Rottenberg

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I Am Now the Mother of a High School Graduate!

June 5, 2011 Rachel Education, Parenting

I can’t believe it. I really can’t. It was just yesterday that I had that liberating experience of leaving high school behind forever, and now, my daughter has just graduated. How can she have grown up so quickly when I’ve hardly aged at all? It’s a mystery.

But grow up she has, and yesterday, she graduated in a beautiful outdoor ceremony at her small, rural school. Her graduating class consisted of only 15 students and, in keeping with tradition, each of them got up to give a short speech. Here is a photo of Ashlynne speaking:















And here is a photo of Ashlynne listening to the other speeches (and looking beautiful besides):


















For her graduation, her aunts, uncle, grandma, and cousin from her dad’s side all came up from Connecticut. I had been very apprehensive about seeing them again — it had been 10 years since the last time — but everyone was very friendly. Some friends of ours also came to wish Ashlynne well, including her best friend’s mom, who made her an amazing 15-foot Doctor Who scarf, knitted to specification to match the scarf worn by the fifth Doctor:


















And then, of course, there were the proud mom and stepdad:


















And the very, very, very happy graduate:


















© 2011 by Rachel Cohen-Rottenberg

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Living with an Open Heart

May 7, 2011 Rachel Childhood, Communication, Friendship, Parenting

My daughter has been going through a difficult time in these past couple of months. I don’t want to share particulars, except to say that she’s dealing with having been abandoned by someone she was very close to — someone to whom she was a very loving and caring friend. It happened very unexpectedly, without warning, and left us all reeling.

Ashlynne has dealt with some difficult and heartbreaking things before, but there is something going on here that feels much different to me. It feels like a loss of innocence, as though her childhood has abruptly ended. Perhaps it’s because it’s yet another ending — like the end of high school, the end of living at home, and the end of the arc of her first eighteen years. Because it came so quickly and so painfully, it’s resonating across all these other endings.

It’s like a tear in the fabric of Ashlynne’s past. It hurts to imagine her going off to college without the tie to the past that this friend represents. There’s barely a thing that Ashlynne owns that doesn’t have the memory of her friend intertwined with it from the past five years of their lives together. And so, her friend’s absence is always palpable.

We’ve had a number of long talks about the situation, and Ashlynne is aware that she has done nothing wrong. So we’re not spending any time on second-guessing and self-blame, thank God. Instead, we’re starting to talk about the kind of people we are in this family, how it feels when people take and walk away, and how to care for our hearts and minds in these kinds of situations.

I have been in Ashlynne’s shoes many times in my life. It’s in my nature to be helpful. It makes me happy, and it rarely feels like a burden. And even when it does feel like a burden, it gives me satisfaction to carry it. Many times, I’ve been the person to give with an open heart, only to find that the other party is nowhere to be found when my hour of need arrives, or when it’s time to celebrate a joyful event.

I’m not talking about helping by giving money or material things, as I don’t give either away very easily at all. It tends to complicate friendships, and besides, I’m eminently practical and sensible when it comes to both. I’ve never been ripped off or taken advantage of financially, and I never will. In financial matters, it’s in my nature to be deeply suspicious and to exercise an abundance of caution.

But emotionally and spiritually, I flow outward. I used to think this basic approach derived from my autism. I used to think that, because I have neither the ability nor the desire to manipulate people, I’m just open to what they need and how I can help, and that I get blindsided when they don’t reciprocate.

But I was wrong. It’s not the autism at all. My neurotypical daughter, my neurotypical ex-husband, and my neurotypical present husband all operate just as I do, and they’re all just as capable of being blindsided. None of us thinks that life is all about us, none of us holds back from wanting to help people in difficulty, and none of us, in our heart of hearts, really expects things to go as badly as they sometimes do.

My ex-husband used to sum up his relationships with other people by saying, “I’m the guy who always picks up and drops people off at the airport, but when it’s my turn, people just tell me to take a taxi.” I spent a lot of time in that taxi with him, literally and figuratively, over the thirteen years of our relationship, so I know that he’s right.

My present husband is also a very generous person whose first impulse is always to ask how he can help. What’s troubling is how often people take that help completely for granted. He does it all so lovingly, so patiently, and so well that people often think that he’s some sort of higher being to whom it all comes naturally. They’ll recite an encomium on Bob and what a wonderful person he is, but deep down, most of them have no understanding whatsoever that he has worked very, very hard, throughout his life, to have the spiritual and emotional discipline to do what he does. It’s not something you’re just born being able to do. Yes, he’s got some great raw material to work with, but without all his years of spiritual and emotional work, all that great raw material would have come to nothing.

And what’s even more upsetting to me is how few people understand or appreciate how much the giving takes out of him, and how much support he needs.

And my daughter is all about counting her blessings and wanting to share them with others. She is welcoming, generous, and caring. I don’t think it ever occurred to her that what just happened was a possibility. Sure, people can have a falling out, but you’ve got some warning there. You know that things are not good, and you’re in conflict. In this situation, there was no warning. Absolutely none. It just happened, like a piano being thrown out a fourth-story window and barely missing your head.

It tears my heart out. It really does. I feel sad, and I feel well and truly pissed, too.

But all I can do, in addition to supporting Ashlynne emotionally, is to work through the current issue with an eye to how to approach these situations in the future. So I’ve been reflecting on relationships lately, and on the things I’ve learned that might be helpful to Ashlynne as she enters adult life.

There are some situations in which you can make a conscious choice to give, without any expectation of reciprocity. That’s a very high ethical level of giving, and perfectly appropriate in some situations. It’s not a bad way to live, so long as you’re aware of what you’re doing and why.

But you can’t base a friendship or an intimate relationship on that kind of imbalance. There has to be reciprocity. So I’ve learned, over the years, to scope people out better. I don’t just pour out all my giving at once anymore. I see what the other person is capable of, and I try to match it. It’s never perfect, but I’m getting better at it. So I’ve suggested to Ashlynne that she stay mindful of holding a balance and that, when the balance is upset, that she be aware of it and how to bring it back to center.

Of course, part of what feeds an imbalanced relationship is a failure to articulate needs. When I don’t assert my own preferences, I have no way to gauge the other person’s level of commitment to me and what he or she is truly capable of giving. In the absence of that information, there is no way to adjust the level of giving in a friendship. I just end up “on” until the other person is done taking or I’m exhausted, both of which often happen pretty much simultaneously.

It’s been good to look at these things, because it means that I can help my daughter along the path. But in the final analysis, everyone in this family is going to be open to the kind of hurt that Ashlynne is going through right now. I don’t think there is any way to completely protect against it without closing off and distorting our true natures. We can take steps to avoid these kinds of situations, but we’ll never be immune to them, because we will so often take the emotional risks that come with doing the right thing.

I’ve come to accept the situation for myself, to some degree, but I’m having a much harder time accepting it for Ashlynne.

In my worst moments, I feel like an absolute fool for having raised Ashlynne to be a kind and ethical person. In the past week, I’ve actually thought to myself, “What an idiot I’ve been! If only I’d just said to her, ‘Honey, just go out there and take from the world. Giving is for saps.’” Instead, throughout her entire childhood, we discussed Torah, and did role ethical playing, and made a commitment to being the hands of God in the world. Sometimes, it feels as though I’ve sold my daughter a bill of goods.

But I know I haven’t. I know I’ve taught her about what’s highest and holiest in life. The solution to the madness of “me, me, me” isn’t to become part of the problem. If I’d raised my kid that way, I’d have done major damage to her essential nature — and to mine.

So am I a fool to be giving in a world in which so many people just take? Perhaps. But I’m beginning to realize that if I’m a fool, I’m a fool in the service of what’s right. I’m not big on the question of belief in God, but I am very big on my experience of God, and doing right is the experience of God in the world for me. In the eyes of the world, maybe I look like a fool to think about giving before taking. But I’m learning not to care. Doing what’s right makes me feel safe, and sane, and connected to something greater than myself. The opinions of other people really can’t hold a candle to that feeling.

So screw the wisdom of the world. Yes, there’s a lot of difficulty and disappointment on this path, and sometimes, I wish I could save my daughter from it. But I know that I’d be interfering with the beauty and wonder of who she is, and with her connectedness with all that is, and that, I will never do.

© 2011 by Rachel Cohen-Rottenberg

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Following the Path with Heart

April 26, 2011 Rachel Education, Parenting

It’s been a very intense weekend in our house, in a very good way: my daughter Ashlynne made her final decision about which college she wants to attend, and she finished her senior project, the culmination of a year’s worth of work.

Ash applied to seven colleges and was accepted into six of them. After much thought, and angst, and worry, and indecision, she finally went with her first choice all along, and accepted admission into the University of California at Santa Cruz.

Huzzah!

I am so overjoyed for her. She went out to visit UC Santa Cruz this past November, and she loved it there. She loved the ocean, the redwoods, the beauty of the campus, the classes she attended, the people she met, and the town itself. But since she had offers from other colleges, she wasn’t sure on what basis to make a decision. What ultimately became clear was that Ash needed to follow her heart.

As we worked through the decision-making process, I shared with her how I ended up at UC Berkeley. My first two years of college, I went to Princeton. I had worked, and worked, and worked so hard to get into an Ivy League school. I had overachieved like crazy. I had studied for my SATs and my college boards until my eyes had nearly fallen out. I had read all the books about the different colleges. And I had worried so much, for so long, about making the right choice.

Then I went to Princeton, and it was complete disaster in almost every way. Socially, it was a wasteland. Intellectually, I found a troubling lack of curiosity. Ethnically, I encountered way too much anti-Semitism. And geographically, I was stuck a tiny little affluent town, and I wanted to see the wider world.

At the end of my sophomore year, I went out to Berkeley with my roommate, whose family lived there. The visit was only supposed to last a summer, but as soon as I crossed the Sierras from Nevada to California, it felt like a homecoming. At the end of the summer, I went back to Princeton for three weeks, but my heart was calling out for the Bay Area, and I knew it was the place I was supposed to be. So I went back to California, worked some minimum wage jobs, paid my way, made some friends, smoked some cigarettes, drank some espresso, and found myself a home. For awhile, I never even considered going back to school.

After a year and a half, though, I was bored to death serving up fries and wiping up runny noses (no, not on the same day), so I decided to go back to college. Unlike the first time, I didn’t fret over it. I didn’t consult lots of books about available programs. And I didn’t wonder whether I was about to screw up my entire life by making the wrong decision.

All I wanted to do was to get a college degree. So I looked around, noticed that there was this university called UC Berkeley, about which I knew nothing, right in the neighborhood, and I thought, “Hey, I’ll apply there!” And I did, and I had a great experience there.

Everything that’s come into my life after that point has come about because I followed my heart and went to college in a place I loved. I loved it so much there that I got a master’s degree as well, which led to the job at which I met my first husband, which led to Ashlynne’s coming into the world. And having Ashlynne has brought about so many decisions that have landed us all in the good place we are today. I followed my own path, and so much has come of it — including sitting in Ashlynne’s room, working out which place she wanted to go to school, and encouraging her to dream her dreams.

Ashlynne has always felt that Santa Cruz was the place she wanted to be, for so many reasons that go above and beyond the university itself. So even if the place doesn’t measure up to her dream of it (and what place does?), something good will come of it, I am sure. It will propel her on the path that’s hers, the path with heart.

I’m very proud of my kid and all she’s accomplished. But her accomplishments pale in comparison to who she is as a person. She’s kind, she’s sensitive, she’s ethical, she’s compassionate, and she’s a loyal and caring friend. Those are the things I most value about her, and I’m so proud of all the ways in which she brings light and beauty into the lives of the people around her.

© 2011 by Rachel Cohen-Rottenberg

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Positive Autism Parenting Blogs

January 11, 2011 Rachel Parenting, Spectrum Pride

All of you lovely and supportive parents who commented on my last post made me feel so much less alone. You were unfailingly respectful and affirming, and you extended yourselves without defensiveness. You understood that my intent, now and always, is never to deny anyone’s grief and pain, but to ask for sensitivity and respect regarding how, when, and where those feelings are expressed and manifested. The nuanced levels of feeling that derive both from being Autistic and from parenting Autistic children are not lost on any of us, and I’m so glad that we were able to have such a great discussion.

This morning, I decided to replace my list of “Autism Blogs” with two lists. One is called “Autist Blogs,” and it contains links to blogs by Autistic people that I regularly read. The other is called “Positive Autism Parenting Blogs,” and it contains links to autism parent blogs that have felt safe for me to enter. The divide between Autists and parents can feel very deep and wide, but I’m determined to help bridge it by highlighting blogs that I feel do an excellent job of balancing the challenges of parents with respect for Autistic people. As you’ll see, because some parents are also Autistic, some blogs appear in both lists.

Of course, every reader will want to make a personal determination about whether a site feels safe or not. We all have different sensitivities. The blogs I’ve listed are the ones that appeal to mine.

If you know of other positive and affirming autism parent blogs, please leave a link in the Comments section. Because I filter comments that contain links, your message will be moderated (or go to spam), but never fear! If you provide a link to a blog that feels right to me, I will retrieve and post it.

Thank you all for being out there.

© 2011 by Rachel Cohen-Rottenberg

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Autism Parents: It’s Time to Stand Up With Us

January 8, 2011 Rachel Community, Empathy, Friendship, Marginalization, Parenting, Self-Advocacy

I’ve recently had a very painful experience on another site. It’s not the first such experience I’ve ever had, and it likely won’t be the last. I’m not going to mention the name of the site, partly because I like the people who run it, and partly because what happened is not at all particular to them. It happens all the time, and it wouldn’t be fair to call them out specifically without naming every other equally problematic situation. Similar instances are so abundant (and multiply so rapidly) that I’d never get to the end of it.

The site I’m talking about is not someone’s personal blog. What people say and do on their personal blogs is none of my business, really. I mean, if I don’t like what they say, I can just stop reading, yes? No one invited me in, and I can always find the door. However, the site in question is one of the many “autism community” sites that posts articles from folks involved with autism in one way or another. I tend to have more of an investment in those sites, because most of them actively invite participation from all comers and present themselves as being inclusive. I’m a sucker for all that. Truly.

But it’s one thing to say “We want to hear a range of perspectives” and “We’re an inclusive community” and quite another thing to make it safe for everyone to participate. When it comes to places being safe for all comers in the autism community, we Autistics tend come in last.

I’m pretty certain that most people who read my blog can come up with any number of examples of what I’m talking about. In fact, these experiences are probably the reason that a lot of people come to my blog, and others like it, in the first place. But for the sake of clarity, I’m going to be specific about the kinds of things that make places feel unsafe. In addition to references to autism as an “epidemic,” these things include, but are certainly not limited to, posts and comments in which the writer says the following:

How disappointed the person is to have an Autistic child
How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)
How altogether unfair it is not to get the child the person dreamed of
How getting an autism diagnosis is like finding out that someone has died
How autism is analogous to a fatal disease

Now, I’m not saying that it’s not okay to feel these things. Everyone is human, and everyone has the experience of life not aligning with their deepest hopes and dreams. That’s where grief comes from and, trust me, we Autistics have had these experiences—not because something is Terribly Wrong With Us, but because we once had a dream that the world would love and respect us for who we are, as full human beings with a complete set of human feelings, and the world seems bent on reminding us that it just ain’t happening.

So yeah, we totally get it. Truly. And as I said, it’s fine for people to have these feelings. What’s not fine, to my mind, is to create a forum that is supposed to be inclusive, and then allow people to say demeaning things without a hint of self-reflection or self-criticism. It’s one thing to say, “When I got my kid’s autism diagnosis, it felt like I’d just been told she had cancer, but then I realized how demeaning that is and, for the sake of my child and others like her, I’m not going there again.” I support that. But it’s quite another thing to say, “When I got my kid’s autism diagnosis, I felt like I’d just been told she had cancer, and why should such a thing happen to me?” And when ten, or twenty, or thirty, or a hundred people chime in with a version of “I know! It’s all so unfair!” without any pushback at all from anyone, it just adds insult to injury.

Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours? To tell you the truth, I don’t know and, at this point, I don’t care. Over the past couple of days, I’ve realized that I’ve got to stop asking the Why is this happening? question. It’s a bottomless pit of a question, because the answers all have to do with people’s personal issues and, if we keep waiting until people get clear on their personal issues, nothing will ever get better.

Rather than framing it as a personal issue, I’m going to frame it as an ethical issue, because that’s really what it is. So I’m not going to burn a lot more grey matter on the Why is this happening? question. Instead, I going to turn my attention to the What can we do to stop this from happening? question.

As one of my fellow Autists said to me, just imagine if someone compared his or her gay child’s coming out with a Tragedy of Epic Proportions. There are some people in the world who do consider it a Tragedy of Epic Proportions to have a gay child, but a large proportion of straight people would consider that perspective to be seriously messed up. And not only would they consider it seriously messed up, but they’d take the expression of that perspective as a golden opportunity to say so. It’s not that they’re insensitive to the feelings of people who believe that their gay children are literally headed straight to hell. The pain of that must be excruciating. It’s that they’re sensitive to the impact of this kind of talk on people in the LGBT community and what it does to the lives of living, breathing, fully formed human beings, every minute of every day.

But I have never—and I mean, never—seen any non-Autistic person on any blog, anywhere, stand up and put a stop to this kind of talk about Autistics. I’ve seen Autistic people try to put a stop to it. I’ve been one of them. But not once has any non-Autistic person backed us up by telling their fellow non-Autistics to knock it off.

Usually, when I protest, I get roundly ignored. If I do get a response, it’s generally along the lines of, “Thank you for your perspective, Rachel. It’s very valuable.” When I’m posting on a mom blog, and I share my insights about what the person’s Autistic child might be going through, I love hearing exactly that response. In fact, I only read mom blogs in which people appreciate my contribution, because those moms realize that Autistic adults can give them a perspective that no one else can. But when I’m crying out against demeaning words that harm the minds and hearts of Autistic people, telling me that what I’m saying is valuable isn’t nearly enough. Not even close.

Parents, you have to stand up against demeaning words. You have to push back. You cannot leave it to us to carry this burden alone. When I protested about the situation on the site in question, one of the site owners said, “I think it’s important that you keep coming back here to educate people.” And sure, I’m all for educating people—but it’s a bit much to put that responsibility solely on the shoulders of the beleaguered minority, and to walk away from the responsibility yourself. If you don’t understand that you need to stand up with us, how successful can my “educating” really be? And if you’re a member of the majority, and you don’t serve notice to other people in the majority that you will not tolerate people using words that batter our hearts and minds, they will feel permitted to keep using those words. Forever.

If it were only people of color who had fought for civil rights in America, we wouldn’t have any civil rights legislation at all. If it were only LGBT people who had fought for gay marriage, I woudn’t have lived in two states that have legalized it. The outrage of the majority is necessary to the civil rights of the minority. Always. We can keep your feet to the fire, but we can’t change the world alone.

Look at all the violence against women in our world. Why does it happen? We’ve had feminism, and the women’s movement, and all kinds of powerful women in all kinds of positions of authority, for many decades now, and yet, women are still being battered at an alarming rate. It’s not because women haven’t worked hard to end it. It’s because most men consider it a woman’s problem. Plenty of men do not assault women, but how many of these peaceful men actually get together and say, “We must put a stop to this. We must do everything we can to stop other men from believing that it’s perfectly all right to beat up a woman”? Precious few. They figure that they’re not doing the battering, and that’s enough for them.

It isn’t. And if you really want to make the world better for your Autistic children, it isn’t enough to respond with “Thank you for your perspective” when Autistic people say, “Stop using words that demean and belittle us.” It isn’t enough to be the one who doesn’t use those words. It’s time to start calling out the people who do. It’s time to say, “Stop using those words. They’re not just demeaning to your child. They’re demeaning to my child. They’re demeaning to any Autistic person who hears them, and they’re demeaning to Autistic people everywhere.”

In my own community, there are a number of Autistic young adults that I cannot reach. They do not want to spend time with other Autistics—not because they’re decided that they have better things to do, but because they have spent their lives so battered by the talk of pervasive wrongness and tragedy and brokenness that they are in complete rebellion against being Autistic at all. And I can’t say that I blame them. But these are not people who are “passing” for neurotypical. These are people who are struggling with everyday tasks and seriously in need of support. And yet, they want nothing to do with the very people who could include them in a supportive community.

I don’t think that every Autistic has to self-identify as Autistic; there are plenty of ways to construct identity, and as long as that identity is positive, I’m happy. But we’re not talking about people who have constructed a positive identity. We’re talking about people who are fleeing from themselves and ending up completely isolated, with neither a clear, healthy sense of self nor a welcoming group of people in which to be themselves. And why? Because they’ve heard one, long, unbroken message all their lives that they are one big tragic disappointment, and no one in their lives has put a stop to it.

I will spend the rest of my life helping Autistic people to create a strong, empowered, positive Autistic identity, free of shame and stigma. I know many people in the Autistic community who have the same commitment. And community is crucial; without it, we’re stranded. But creating a refuge is not enough. We have to create a world in which people do not feel like walking disappointments. We can talk about inclusion all we want, but if people feel that their very existence is a tragedy, they can’t even begin to avail themselves of what inclusion really means.

So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.

© 2011 by Rachel Cohen-Rottenberg

75 comments

On Becoming the Mother of an Adult

January 5, 2011 Rachel Parenting

In the past month, I’ve become the mother of an 18-year-old daughter. I won’t exaggerate and say that it’s been as momentous a process as giving birth. After all, it’s pretty momentous to bring a complete stranger into the world, and to invite that stranger to live in your house, eat your food, interrupt your sleep, spit up in your hair, trigger absurd amounts of worry, and make you feel more vulnerable than you’d ever thought possible.

In fact, if you apply the word momentous to giving birth, you’ve pretty much ruined your ability to use it in a meaningful way about anything else.

But becoming the parent of an adult is a huge milestone, the result of 18 years of intense labor. Being a parent is one, long, ceaseless act of faith and love—even when you’re saying very mature things like “If you don’t sit down and do your work RIGHT NOW, we’re ending the homeschooling and sending you to PUBLIC SCHOOL. Is that what you want?” The occasional moments in which you become one with your inner six-year-old are as inevitable a part of the process as the moments in which you say just the right thing and all is right with the world.

In many ways, I feel the same relief now that I felt after 22 hours of labor when Ashlynne was born. It’s a feeling of the intensely hard work being over. It’s an illusion, of course. For one thing, the hard work of parenting actually begins after the labor of childbirth, so if the past is any indication, I can be quite certain that the rest of my life is not going to be one free pass. For another thing, it’s not as though the intensity of child-raising remains constant over time. After all, it’s been a good long while since I’ve needed to wipe Ashlynne’s nose, zip up her coat, or accompany her to a friend’s house, just to make sure that she’s safe. But there’s a feeling of “We did it!” that fills me with a kind of peace I wasn’t expecting.

I’ve found myself especially excited about the prospect of Ashlynne going to college in the fall, and I say that knowing full well that she is not going to be close by. Because she wants to escape New England winters and go to a college with a strong creative writing and arts program, she is applying to UC Berkeley, UC Santa Cruz, UC Davis, Whittier, Pitzer, and two different campuses of the University of North Carolina. And yet, I’m dealing. Maybe it hasn’t hit me yet that I’m not going with her, but it makes me indescribably happy to imagine Ashlynne at school in a place that she loves, pursuing her gifts. Imagination isn’t quite the same as being there, but if you’re as visual as I am, it goes a long way. At least, I hope it will.

But enough about me. I’m going to let the girl speak for herself. With her permission, I’m sharing an essay that she wrote for one of her college applications. It reflects who she is so well—her generosity, her social conscience, her creativity, her sensitivity, and her sense of responsibility. It’s pretty amazing:

I know that I am privileged. I have food, clothing, shelter, parents who love me, and the opportunity to go to college. As a person with this much privilege, I recognize that it’s my duty to help others. When I began researching colleges, I became interested in Pitzer because the core values of the school ensure that the education I receive will not only benefit me academically, but will also help me find my place in the world.

For the past six years, I’ve been practicing community-based social responsibility at my school. Instead of having locks and alarms, we have the honor code – a document that every student and teacher agrees to uphold. My school has taught me to be socially responsible in all of my interactions. I don’t tolerate bullying, stealing, or disrespect. On a larger scale, I have spent my adolescence fighting for human rights. For example, gay rights is a cause close to my heart. I was raised in a liberal environment with many gay people. As I got older, I became more aware of oppression based on sexual orientation, and I began to fight against it. I participated in The Day of Silence, posted gay-rights related news on my blog for Journalism class, and started an LGBT awareness group at school. As I leave home, I will continue fighting to make the world a more socially responsible place.

To my mind, intercultural understanding is tied closely to social responsibility, and respect for other cultures has been part of my entire high school experience. My best friend Nadia is Muslim, and I have been there as she struggled with the growing anti-Muslim sentiment in America. As Nadia became more interested in international affairs and her Lebanese heritage, I learned about the larger world as well. We often lamented how difficult it was to get anyone to care when a natural disaster devastated Pakistan or thousands of Palestinians lost their homes. Nadia taught me to look beyond my privileged American life to those suffering oceans away. I am painfully aware of intolerance for other cultures and races in America, and I believe it is my duty to debate and educate people on these issues wherever I go.

In my quest to educate people about human rights violations and the value of other cultures, I realize that I must be able to write well. These topics span several subject areas, and in order to discuss them with others, I have to write about many different disciplines. I am especially drawn to photojournalism, a cross-discipline pairing that affects people emotionally as it informs them intellectually. Photojournalism shows people the disasters they don’t see, the cultures they don’t know, and the people they shun, and it reveals their misconceptions. My parents homeschooled me until the seventh grade, and interdisciplinary learning was a big part of our curriculum. I studied Judaism by reading literature, discussing ethics, learning ritual and language, and practicing community service.

Throughout my homeschooling years and my time at school, I have been responsible for my own work. My parents let me choose which books to read and when to study each subject and, at school, I have free periods instead of study halls, and I’m trusted to use my time productively. I have a strong work ethic, and I trust my ability to independently solve whatever problem comes my way. This autonomy has taught me to take initiative and to make ethical decisions on my own despite opposition, such as when I began an LGBT awareness group. Student autonomy at Pitzer is important to me because I want to continue strengthening my ability to think, to make decisions independently, to stand by my beliefs, and to not give in when I fight against ignorance or intolerance.

Every time I read Ashlynne’s writing, I’m reminded once again that having a child isn’t about keeping the human race going.

It’s about making the human race better.

© 2011 by Rachel Cohen-Rottenberg

32 comments

I Am So Not Like the Other Soccer Moms!

December 5, 2010 Rachel Childhood, Parenting

Now that my daughter’s high school soccer career has drawn to a close, I’ve had some time to reflect upon the ways in which I fit in—and didn’t fit in—with the other parents.

Of course, when my daughter began playing soccer six years ago, I was right in the thick of things, chatting it up with the other moms. It was four years before my diagnosis, and Ashlynne had just started regular schooling, so I was very keen on being in the midst of it all. From the outset, though, three things set me apart:

1. For the first few years, I brought food for my daughter and her teammates to every game. Sometimes, another mother brought food, but I brought food every time. I mean, lunch at school started at 11:30 am, and the soccer games started at 3:30 pm, and those girls couldn’t play with their blood sugar running low, now could they? So I brought chips, or popcorn, or peanut butter and crackers, or graham crackers, or chocolate chip coookies, or whatever looked quick and delicious at the local market.

Once Ashlynne got older, I stopped, mainly because I wanted to give her space to be with her friends—and also because I figured out that the kids had brought food to school, and so the risk of their collapsing on the soccer field was minimal.

2. I tended to talk with Ashlynne and her teammates in a very down-to-earth way. For example, this fall, her team played a game that was just spectacular. The girls were passing to one another beautifully, and Ashlynne was making a series of fantastic saves in goal. After the game, I went over to Ashlynne and her best friend, and said, without any preface whatsoever, “Day-um! You guys were on fire today!”

Her friend looked at Ashlynne, smiled, and said, “I love your mom!”

Apparently, not all the soccer moms open up a conversation with “Day-um!”

Who knew?

3. Most of the other parents socialized during the game. Now, I tried socializing, too. I did. I sat in the bleachers with the other parents, and I did all right.

The problem was that most parents were so busy socializing that they missed what was going on in the game. They talked about anything and everything, and they rarely talked about soccer. My breakpoint came when one of the girls scored a goal, and her mother missed it completely. She stopped talking long enough to say, “Oh, did Lucy get a goal?” as though it were a distraction from why she had come. Then, she just picked up talking where she’d left off.

I just couldn’t understand why socializing took priority over watching the game, but I knew one thing for sure: I was there to watch my kid play soccer. So, I began spending each game on the sideline, camera in hand, taking photos and shouting encouragement to the team. When Ashlynne started playing goal, I’d stand on the sideline on her end of the field, snapping photos like crazy and shouting out support. I had a friend come to a game with me once, and she kept trying to talk to me through the entire game instead of watching it. I’m not sure how she missed that I’d invited her to watch my kid play soccer, but clearly, socializing was far more important than the action on the field.

Now, I will admit that it was a big relief to get away from the socializing, because it made the sensory experience of the game so much more enjoyable. But I know that my desire to have some peace and quiet to watch the game wasn’t just a sensory thing, because Bob did exactly what I did. He stood on the sideline, cheering the kids on, for exactly the same reasons. He was there to see the game, not to yack with other parents. At halftime, he’d go and schmooze with the other adults while I got some quiet time to myself, but other than that, we were both focused like proud parental laser beams on the game.

I’m very glad that I paid attention. It’s all gone so very quickly. It’s hard to believe that six years ago, Ashlynne ran from the ball, and that since then, she’s been named her team’s MVP, become a co-captain, and won this year’s Excellence in Soccer award at her school. I have a lot of good memories of watching her on the soccer field, and they’ll stay with me forever.

© 2010 by Rachel Cohen-Rottenberg

13 comments

“I’m Ignoring You Because I’m Just So Terribly Busy!”

October 18, 2010 Rachel Communication, Community, Parenting

Are you sick of the “I’ve just been so terribly busy!” excuse for rudeness? Do you have the uncomfortable feeling that it’s just another form of rudeness? You’re not alone.

Yesterday, I felt like I was up to my eyeballs in this kind of discourtesy. Two situations came together at just the same moment. Both scenarios involved, I kid you not, offers that I made to help others in the community. For free. Yes. For free. Just because it seemed like a good thing to do.

In the first case, I’ve been asking to help out at a place in town since February. Every couple of months, I send the guy in charge an email, reminding him that I’m available to help–for free–and I inevitably get a response along the lines of “I’m just so terribly overextended, and I’ll get back to you soon” and then, I hear nothing. Two months later, I write another email, asking why I’m being ignored and restating my interest in helping out with my highly paid professional skills–for free–and I get much the same response. Sometimes, he throws in, “You know, I’m ignoring a lot of other people too, so don’t take it personally.” It makes me feels so much better to know that other people are being treated equally rudely, don’t you know? And did I mention that I’m trying to help the guy from being overextended by offering my skills? For free? Yes, I am.

The second case involves an individual I was going to do some work for—again, for free. I’ve emailed three times, offering my help. The first time, the other person said, “Email me again in three weeks.” I did. Twice. When I finally said, “You know, if you’ve changed your mind, you can just tell me,” I got back an explanation of how the person was just so terribly busy, and my email just got left on the back burner, because their kid is applying to college, and everything is so hectic, and so on, and so forth, and could I come over on Thursdays? Wha-hah? Did I mention that I spent last weekend providing support and comfort to my own daughter as she worked on her college application essays? And that I still managed to find the time to actually be courteous to people who asked me things? And that even when I was working full-time and homeschooling, I kept track of who needed a response and made sure that no one got left behind? I did.

And do you know why I did? It’s simple: because I was raised that way.

My parents taught me that if someone offers to help with something, or wants to get together, or asks you a sincere question, you get back to the person in a timely manner. My grandfather’s immigrant parents raised twelve kids in a tenement, so they were a little busy and stressed out, you know? And yet, they weren’t too busy and too stressed out to instill this teaching in their children. My grandfather passed this teaching to my mother, who was in agreement on the whole concept with my father, and they passed it on to me. As you know, my parents were about four or five cans short of a six-pack, and yet, even they understood the concept of consideration for the time and the feelings of others.

When I was a kid, I learned all the social rules. I observed them, I listened to people talk about them, and I followed them. And then, at some point, when I was focusing on something even more fascinating, all the rules changed and no one sent me the memo. These days, as far as I can tell, the rule is that you can disregard the value of someone’s skills, time, feelings, and goodness of heart just because you’re busy. It’s the all-purpose explanation. Surely, you understand?

This weekend, I really thought I must be nuts. I felt like the only person left on the planet who even uses words like “rudeness” and “courtesy” in a complete sentence anymore, and the only human who considers them to be something more than the ancient relics of a bygone civilization. I started wondering who was upside down—me, or the world?

So I said to my husband, “Am I nuts?”

And my husband said, “No, honey. You’re not nuts. The world has gone crazy.”

I told the story to a friend on the spectrum this afternoon, and she had the same response. She just couldn’t understand the idea of leaving someone hanging for months on end without an update or an explanation. Neither can I.

I’m old-fashioned, I know. And I suppose that there are people out there who will pathologize my desire for courtesy as a symptom of being neurotically attached to rules and consistency. Well, guess what? That’s how civilization goes on, people. Rules and consistency. Otherwise, you have chaos. You have callousness. You have gross insensitivity to the feelings of others. You have bullying. You have the survival of the fittest.

You have the world we live in.

© 2010 by Rachel Cohen-Rottenberg

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