Archive for April 28, 2009

Like a Deer Caught in the Headlights

April 28, 2009 Rachel Communication, Monologues, Sensory Processing Issues

Does this ever happen to you?

You’re outside, enjoying your day, puttering in your garden, or taking a walk, and then someone comes along and decides to tell you, in exquisite detail, all about his or her entire marital history, job history, or experience as a small-town government official. The topic doesn’t matter. It’s the sheer amount of time it goes on. And on. And on.

And the person doesn’t tell you the story once. Oh, no. That would be too simple. The person tells you the same thing, over and over and over. More than you need to know. Way more. Way, way more.

I never know what to do at times like these. I just stand there, hoping the person will be quiet soon. I am so afraid of being rude that I don’t dare move.

In these moments, I know that I’m looking at one of the following: a fellow diagnosed Aspie (in which case, the person may not mind being told when to stop); an undiagnosed Aspie (in which case, the person may be anxious about going on for so long, but doesn’t know when to stop); or a self-absorbed NT (in which case I start to feel a little pissed off).

A version of this scenario happened to me yesterday. I really like the person, but I was completely overloaded by the time I managed to extricate myself. I kept trying to give little hints, but they didn’t work. And of course, the more overloaded I got, the fewer hints I could toss out.

I’ve been in this place before. Many, many times. Perhaps I’m not putting out the right signals to let the person know to wrap it up. Or perhaps the person sees that I’m somewhat defenseless against these monologues and decides to take advantage. Yesterday, I don’t think that the person was taking advantage. He’s a good guy. He just didn’t know when to stop. Maybe he was waiting for me to tell him?

Of course, the hardest part is that I’ve also been the person doing the endless talking, telling the same story multiple times, and not knowing when to give it a rest. (Yes, I’ve been that person. So many times, you shouldn’t know.) Perhaps that’s why I don’t interrupt and say that I need to go to the bathroom, or chop wood, or catch my plane to Iceland. I figure that either I’m getting an object lesson in keeping it short, or I’m burning karma for all the times I didn’t.

In any case, I have to learn some self-defense and retreat strategies when these types of things happen. Today has been a failure-to-launch day from beginning to end. I’ve barely been out of the house. It’s partly that I’m exhausted by yesterday’s monologue, and partly that I’m dismayed to find myself filling the role of endless listener yet again.

Does anyone have any words of wisdom about how to disengage from this sort of thing? Like I said, I’m so afraid to be rude that I just get paralyzed.

© 2009 by Rachel Cohen-Rottenberg

17 comments

Music and My Fifth OT Visit

April 27, 2009 Rachel Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Listening

Note: For posts about previous visits, including my sensory assessment, see the Occupational Therapy category, to the right of this post.

My OT rocks! I am so lucky.

I drove down to my OT appointment this afternoon on about 4 1/2 hours of sleep. I had gone to bed reasonably early, but then woke up at 3:45 am and couldn’t get back to sleep. Instead of fretting about it, I meditated awhile, thought about what I’d like to do with the day, and tried to relax till daybreak. Then, I got my daughter up for school and, once she was on her way, decided to do some joint compressions by going out into my front yard at 7 am and digging up what’s left of the grass. Very therapeutic. An hour and a half later, I had breakfast and then worked out on my bike. Also very therapeutic.

Then, just before I left for my appointment, I had a nice talk with a neighbor about the work I was doing in the garden. The talk didn’t last for more than 10 minutes, so I actually succeeded in keeping track of the entire conversation. I like it when that happens.

Finally, I got in the car and drove for an hour to my appointment. I was really looking forward to going. Why? Because my OT rocks!

Oh, right, I already said that. Well, here’s why she rocks:

1. She is friendly in a genuine way.
2. She has a great sense of humor.
3. She is sensitive to my sensory needs.
4. She knows how hard I work just to get through the day.
5. She wants to know how I’m doing.
6. She is very practical.

This list is not exhaustive, but hey, I don’t have all the time in the world here, and I’m trying to learn brevity. (How am I doing so far?)

It seems like nearly everything we did today involved music, which was wondrous.

But first things first: When I got there, she asked me what I needed in order to ground, and before she even got the words out of her mouth, I said, “Thumper!” (Quirky Mom, you might want to skip the rest of this paragraph.) She used that divinely inspired machine on my back, and this time, I could feel the vibrations in my nasal cavities and in my lips. Pure heaven.

Then, she asked me how the Therapeutic Listening was going. I really love the Mozart for Modulation CD, but found that I’ve been getting a lot of migraines lately. She thought it might have to do with the fact that I sometimes listen for more than a half hour at a time. When I’m out gardening, I lose track of time and have probably listened to the CD for 45 minutes to an hour in one session. The music is really working my ears, so even though I don’t feel like I’m working hard, I am. She said that for the next two weeks, I should start by listening to the CD for 20 minutes, twice a day, once while resting and once while being active (doing chores, having dinner, and so forth). I’m supposed to increase my listening time by 2-3 minutes every 1-2 days.

That sounded good. Then, I got to choose a new CD. I started by listening to one that had children’s songs on it. It was kind of sweet and appealed to the childlike Aspie aspects of my soul, but when the alphabet song started, my brain got really hooked on the letters. The whole point of the exercise is to listen to the CD without fully concentrating on it. In other words, the point is to multi-task. If I get hooked on the letters, I’m giving the music too much attention.

So she gave me another CD, one with water and dolphin sounds, along with some sort of music in the background. It drove me nuts. The music had no center. I don’t know why some people find that relaxing, because it makes me want to cry.

My OT said we didn’t have a lot more choices for this stage in my Therapeutic Listening life, but perhaps I’d like a Vivaldi for Modulation CD? OMG! Heaven. Absolute heaven. I love Vivaldi with a passion. So I was a happy camper. I listened to Vivaldi while my OT asked me a lot of questions about other parts of my sensory diet. I’ll share a little about that.

I love working out on my bike and singing with the Annie Lennox Medusa CD. It’s a 45-minute CD, and I listen to it twice. I’m noticing that my singing voice is getting much stronger and clearer, and that I’m singing with more of my body. It feels great. My husband loves the CD too, so sometimes, he’ll come in and do paperwork and sing with me. It’s way fun.

I’ve also relearned Torah cantillation, and have been choosing random portions of Torah to chant every couple of days. It makes me feel really great to know that I can just pick up any passage and follow the cantillation marks without much trouble. When my husband and I were leading services, I would prepare a Torah portion, and it always felt like a lot of pressure. Now that I’m doing things for my own enjoyment, they’re much more fun. I’m not chanting Torah in preparation for any kind of public gathering. I’m just chanting because I love it. In Jewish tradition, it’s customary to rock back and forth when you’re chanting or praying, so I get to do movement that feels very natural to me.

A few weeks back, I xeroxed some lines from Torah and put them on a door in the kitchen. There are three groups of words. I have to look up to see one, I have to look directly in front of me to see another, and I have to look down to see the last one. My task is to start from 10 feet away, chanting from the top, while walking forward and backward. Kind of like walking and chewing gum, except harder. I had been practicing this exercise a few weeks ago, and the OT said to reinstate it. I enjoyed the exercise before, so that will be fun as well.

So, there you have it. I left the appointment feeling very relaxed and focused. On my way home, I even had the energy to stop at a store that sells perennials. I bought a few (okay, eight) to bring home and plant. When I got home, I was quite tired, but lying down didn’t help, so I went back out and attacked the remaining grass in my front yard. It is now gone. Time to start planting the garden!

© 2009 by Rachel Cohen-Rottenberg

5 comments

Seeing My Life from a Sensory Perspective

April 26, 2009 Rachel Childhood, Eye Contact, Perseveration, Sensory Processing Disorder (SPD), Sensory Processing Issues

[Note 1: This post includes some general information about the abuse I experienced as a child. The descriptions aren't graphic, but if you're not feeling up to reading about the subject, feel free to skip this post.]

[Note 2: I spell the word God like this: G-d. It represents my belief that G-d is beyond all words and images, beyond any name I could employ to represent the unfathomable mystery of existence. It works for me, but I don't mean to suggest that it should work for you. I have enough on my hands without telling other people what to believe!]

And now, my post:

In the process of realizing that many of my challenges are neurological, rather than psychological, I’ve begun reassessing key relationships from earlier times in my life. A great deal comes into focus. I can make sense of things that had previously been entirely baffling. Most of the issues revolve around my very painful relationship with my parents and extended family, so these are the issues I will share in this post.

My Relationship with My Father
My father was most likely an Aspie. He was abusive, but in a very odd kind of way. He lacked meanness and guile. I never felt that he was a bad person. He just didn’t understand boundaries or what kind of behavior was appropriate. He seemed very lost. I knew he was on overload a lot, even though I didn’t have the words for it. He had many other Asperger traits: he couldn’t make eye contact, he thrived on non-sequiturs, he loved detail, he couldn’t hear me in situations involving more than two people, and he constantly interrupted and changed the subject of any conversation.

Regarding the abuse, I don’t excuse his behavior, but I see why it always had this weird quality of cluelessness rather than malice. It never seemed textbook, and until I discovered AS, I was mystified as to why. I kept waiting to meet someone with a story similar to mine, but despite going to a number of survivor support groups over the years, I never found anyone who did.

My Relationship with My Mother
Oy. My mother was always certain that she was right and knew the proper way to do things. And everything—everything—was always about her. For instance, if I were sick, she wouldn’t say, “Oh, I’m sorry you don’t feel well.” Instead, she’d say, “Goddamit, I had plans today.”

Needless to say, she dominated both my father and me. My next-door neighbor from childhood described my parents in this way: “Your father is a puppet, and your mother is the puppeteer.” I immediately had an image of my mother in the second-story window manipulating the puppet strings while my father watered the lawn. It was the perfect image to describe their relationship. As a result, she was able to dominate me almost entirely. It was like living with a tornado.

It may have been common for Aspies in my parents’ generation to marry a dominating partner. I can see why an undiagnosed Aspie might want to marry someone who is absolutely sure she is right, at all times and in all places. It didn’t go very well for me as a child, however.

My Relationship with My Extended Family
When I was 33, I cut off contact with my both of my parents. I wasn’t able to assert my boundaries and be taken seriously, so I continued to feel very unsafe, even in adulthood. After every conversation with my mother (even from 3000 miles away), I fell into very deep depressions in which I didn’t think that I deserved to live. In response to my breaking contact with my parents, the rest of my extended family broke contact with me, including my brother (and only sibling). I have tried to reestablish contact with several family members, but my attempts have been rejected.

Taking a Sensory Perspective
You can see why I approached these issues from a psychological perspective for many years. Working on my healing in conventional psychotherapy did me a world of good.

But the picture never seemed complete until I brought in my Aspie sensory issues. For example, I went to support groups with women who had undergone similar kinds of abuse, and they didn’t present the way I did. To be sure, they suffered from depression, and anger, and sadness, but they were able to cope with life much better than I did. I used to watch them relating to one another during and after the group, and they were able to connect in a way that I couldn’t. I just couldn’t keep up, and I could never understand it. I thought that the abuse had broken my ability to connect to other people. No matter how much work I did, I always felt apart from everyone, behind an invisible force field. Even in support groups, I felt overwhelmed and cut off.

Now, of course, I recognize all of these responses as Asperger traits. Clearly, the trauma didn’t help, but no amount of psychological healing can fix Asperger traits. It’s nice that I’ve finally stopped banging my head against that particular wall. Really nice.

However, the break from my parents has been a more difficult issue for me to resolve. Every year or so, I go through a “Should I have broken contact?” cycle, in which I talk to my husband or my therapist or myself about the whole situation, and why I broke contact, and whether I could have stayed in contact, and whether the first people I’m going to meet when I die will be my parents, and whether they’ll both obliterate me the moment I show up, and whether G-d will be giving them instructions on how to do so.

In response to my perseveration on this issue, my husband invariably says, “Rachel, there is nothing you could have done differently. We’ve been through it over and over. You could not have maintained contact and protected your sanity or saved your life. You know it, I know it, and G-d knows it.”

And the last time I went over this territory with a therapist, she said, “You know, we’ve really got to talk over this G-d of yours.” How could I explain that, as long as I’m not talking about my parents, my experience of G-d is one of unconditional and unending love? Only with my parents in the conversation does G-d become merciless.

These days, though, when I consider the breaking contact question, I don’t feel inclined to perseverate on it. Something has changed in me. I’m able to look at the situation from a sensory perspective, and a couple of things become very clear.

1. I hate my parents. There, I said it. I don’t hate them in the sense of wishing them harm. They have both passed away, and I hope they are with G-d and that they are healed. I would not want them to spend eternity in the same state of mind in which they lived on earth.

The feeling I have is more visceral: my senses are repelled by them. I can’t explain it any other way. When I look at pictures of them, I feel sick to my stomach. It’s my Aspie empath ability to take in the full picture of a person’s energy, while missing all the little nonverbal details. When I take in the full picture of my mother’s energy, I feel repelled by it. When I feel my dad’s energy, I feel exactly the same thing.

It goes beyond anything they did. It’s about who they were. I believe that my parents, like all people, were made of G-d’s light, and that their souls were pure. So I don’t think of them as evil. It’s just that who they were in this life, and who I am in this life, could not coexist happily, anywhere.

2. Given my jangly nervous system, my ability to go into immediate sensory overload, and my extreme difficulty in conversations consisting of more than two people, it’s amazing that my relationship with my parents lasted for 33 years. With my father’s constant interrupting, my mother’s ability to dominate every situation, and the fact that I couldn’t politely disagree with either of them, about anything, without a loud, verbal, angry, relentless cyclone of epic proportions coming at me from their general direction, I’m not sure how I managed to share space with them for five minutes, never mind 33 years.

I always feel that people will judge me harshly over this subject. I hope you won’t. I’ve done the best I can with what I’ve got. I wish things could have been different, but I know now, finally, that it simply wasn’t possible.

© 2009 by Rachel Cohen-Rottenberg

15 comments

Finding an AS-Literate Therapist

April 23, 2009 Rachel Autism-Literate Therapists, Food, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues

I did it! I found an AS-literate therapist. She’s a colleague of the psychologist who diagnosed me with AS in November. And she’s only a half hour away. So now, in addition to seeing an OT in Massachusetts, I’m going to meet with a therapist in New Hampshire. (Did I mention that I live in Vermont?) Anyway, I have an appointment with her in late May, so we’ll get to sit down, and talk, and see whether we click.

It’s been so important for me to find a therapist who understands AS. I’ve done a lot of psychotherapy over the past 25 years, and it’s done me a world of good, but around the time I was diagnosed with AS, I began to feel very frustrated with it. The underlying assumption of psychotherapy is unending progress. You just have to work on your issues, and the sky’s the limit. In fact, my last therapist told me that with a little more work, I was going to “soar.” It didn’t make me feel good. I didn’t know why then, but I understand now. I don’t need to soar. I need to learn how to walk through the world being exactly who I am.

One of the many things that I love about my OT is that she doesn’t make me any promises. She doesn’t say I’m going to “soar,” or learn to filter out background noise, or even go grocery shopping once a week. She doesn’t promise anything. She just gives me tools and says, “Let’s try this and see how it works for you. Everyone is different.” What a relief! It allows me to accept myself exactly where I am, knowing full well that I might make some progress, or none at all. As long as there are practical things that I can do, I’ll do them and see how they work. I like that approach very much.

So it’s a little odd to think about going to a therapist again. A great deal of my present work consists of undoing all the psychotherapeutic assumptions I’ve lived by for 25 years. The main assumption to overcome is that all of my problems are emotional and psychological, rather than neurological and physical. Undoing that assumption is very hard work, but I’m getting a little better at it. Consider the following:

1. How I handle my anger. I have lots of reasons to be angry. My lousy childhood. My estrangement from my original family. Global warming. Autism Speaks. I could go on, but you get the idea. For much of my life, I’ve seen my anger as a psychological problem to be solved. I’ve needed to “work through” my anger at my parents. I’ve needed to learn to “channel” my anger at the ills of the world into productive work. And that’s fine. I’ve worked hard at all that, and I’ve had a lot of success at it, too.

But now, I’m realizing that a great deal of my anger is my nervous system trying like crazy to get my attention. Yesterday at the co-op, in the midst of all the sensory overload, I could feel my anger rising, and I realized that my nervous system was yelling at me: “Get me out of here! Get me out of here! There are too many people! They’re all talking at once! The large-size gloves are driving me nuts! Someone is banging on metal! There’s too much music! Please, take me home! Now!” As my OT would say, my anger is just my nervous system defending itself.

What an incredible piece of information. I don’t have to take my anger out on myself. I just have to listen to my anger as a signal from my nervous system—a signal that I need to respect. The respecting part is the hard part, because I’ve devoted most of my life to overriding my neurological signals. I’ve gotten quite adept at it. It’s become a deeply-ingrained habit, and habits are difficult to break. Difficult, but by no means impossible.

2. Why I overeat at night. I can hardly express what a failure I think I am around food. I soothe myself with it. (Isn’t that just awful? I mean, it’s right up there with global warming and Autism Speaks, isn’t it?) Up until the past few months, I figured I was soothing myself emotionally because of trauma issues, loss, and insecurity. But I’ve worked on these issues forever, and I still use food the same way.

Now I realize that my nervous system is in an uproar at night. An absolute uproar. After a full day of wending my way through the sensory world, I am tired and my nervous system is going nuts. How wonderful to talk with my OT, and to realize that overeating at night is not about a lack of willpower or commitment or strength or character. It’s just my poor 50-year-old jangly Aspie nervous system saying, “Help. Please. Help. I’m hanging from the chandelier. I know you don’t have a chandelier. It’s just a figure of speech. Help.”

So why see a therapist at all? After all, my OT is giving me the information I need.

I need some emotional support, too. I need some support for feeling my otherness, for accepting my aloneness, for guiding my daughter into young adulthood, for figuring out what to do here in mid-life when everything I’ve planned for, and dreamt about, and worked so hard for is done. The therapist I’ll be meeting specializes in helping women through mid-life transitions, so if anyone can help me get comfortable with becoming a crazy old cat lady, it will be someone like her.

Of course, I’ll need to get some cats. I’ll put them on my list. But where do they go in the sequence? At the beginning, before I see the therapist? Or as a reward somewhere down the road? I don’t know. It’s all so confusing. But I’ll get there. Wherever it is. That’s for sure.

© 2009 by Rachel Cohen-Rottenberg

14 comments

Aspie Hell, or Why I Now Hate Baroque Music

April 22, 2009 Rachel Sensory Processing Issues

Hello friends,

I have discovered where Aspie hell is located. Okay, so maybe not all of Aspie hell, but one of its major outposts.

I just got back. It’s rare that one of us comes back with our ability to communicate intact, but I am one tough Aspie, this is my blog, and I am not going to let this information be lost.

You will be shocked—shocked!—to learn where I found it. Do you have your inhaler ready? It is located at our neighborhood, member-owned, grunchy-granola, Obama-loving food co-op. I kid you not. And when did our neighborhood food co-op morph into an outpost of Aspie hell? On Earth Day. Earth Day, people. Can you sense the evil?

Here’s how I happened to find myself there: Twice a month, I work a two-hour shift at the co-op in order to receive a 10% discount on our groceries. The co-op is a very large market that has outgrown its present building. In other words, it’s crowded. I work in the bulk food area, where I put rice or papaya or cornmeal into plastic bags, weigh them, and put a label on them. It’s actually very satisfying work, except that it happens in a location that looks for all the world like a customer-service desk. So, whenever I’m there, I’m pretty constantly interrupted by well-intentioned people asking me questions I can’t answer. It’s very annoying.

Just last night, I was telling the husband that I can’t do my member hours there anymore, because it drives me nuts. The husband suggested that I ask whether I can do some other sort of work, like helping to edit the newsletter. I thought that was a wonderful idea. What happened today was G-d’s way of telling me to remember this wonderful idea.

So here’s what happened: I got to the co-op at 1 pm to work my shift. There were some raisins to bag, so I looked for a pair of disposable gloves. Alas, there were only large-sized gloves, and I have rather small hands. I asked a staff person if there were other gloves, but he was on his lunch break and said he’d look for them in a few minutes. So, I figured I’d use the large ones for a little while.

Silly moi. I put on the large gloves, and in about 30 seconds, I was ready to cry with frustration. The gloves kept slipping and getting stuck in the raisins, and the tactile sensation of the gloves moving around on my skin was more than I could bear. After about five minutes, I decided to go in search of more suitable gloves. I ultimately found some medium-sized ones in the staff bathroom, and they worked just fine.

So, I came back to my post and began bagging the raisins. Then, all of a sudden, somewhere in the stock room behind me, someone decided it was the perfect time to bang one piece of metal against another really, really hard. I just stood there with my eyes closed, feet frozen to the floor, waiting for it to stop. After about 10 iterations, it did.

At that point, I started feeling angry. I tried to breathe and tell myself that I wasn’t angry at anyone, that it was just my nervous system having a hard time. But I sure felt angry. I finally understand why little Aspies get so upset over what looks like nothing to other people. Being an adult, I told myself that no one was to blame, including me, and that at some point, my shift would be over, and I could get the hell out of there.

Then, because some evil genius was undoubtedly in charge of today’s proceedings, music started playing. Baroque music. I thought perhaps it was someone’s cell phone ringing, but it went on too long for that. My next thought was to find the people who had brought their CD player and ask them to turn it down. So I went out walking in the direction of the music.

And what did I find? Two middle-aged ladies, playing Baroque music, on recorders. Recorders. Like in elementary school.

You’re probably thinking that a lot of time must have elapsed between putting on the large gloves and finding the ladies with the recorders, but I looked at the clock, and it was only 1:15. My heart sank, so I tried to cheer myself up by asking the following rhetorical question: “Okay, this is tough, but how long can two middle-aged ladies play Baroque music on recorders?”

Do you want to know the answer? I’ll tell you the answer: One hour and forty-five minutes. I’m not kidding. One hour and forty-five minutes. Till 3 pm. Till the end of my freakin’ shift.

Of course, I didn’t know this at the outset. Every time they finished a song, I thought that was it. Then, they’d start up a new one. It felt personal. And the oddest part was that every single piece they played sounded exactly like the last one. Exactly.

Now, I used to like Baroque music. I really did. I was a classical pianist as a kid, and I know for a fact that all Baroque music does not sound the same. At least, not until today. Today, something happened to Baroque music. Something happened that I cannot explain, and it happened right there in my local neighborhood food co-op.

Never, ever, in my life do I want to hear Baroque music again. Anywhere. I am going to go through all of our CDs, and if I find any Baroque music, I am giving it to the local thrift store. I thought about running the CDs over with my car, but that would be a waste. Surely, someone out there would enjoy the music. Of course, my husband might want to keep the CDs, so perhaps I’ll ask him to put them in a secret hiding place where I cannot possibly stumble upon them.

Anyway, after reflecting upon my visit to Aspie hell, I learned a powerful and ironic truth. I learned that I am a patient person. As Stat Mama said on her blog a week or so ago, we Aspies are not impatient people. Creaky door hinges and ladies playing Baroque music drive us crazy only after we have worked very, very hard to put up with lots and lots and lots of sensory overload. When we finally complain about something, we have been working so hard that we just can’t take it anymore.

What Stat Mama said is true. If I were not a patient person, I could not have spent two hours in Aspie hell being pleasant and helpful to people who asked me questions I couldn’t answer.

If I were not a patient person, I would have left the raisins for someone else to bag and run out of the store in tears.

If I were not a patient person, I would have removed those recorders from the hands of the lovely ladies who were playing them and thrown the recorders into the river that runs behind the co-op.

If I were not a patient person, I would have come home and found some pretext for getting angry at my husband and dumping my upset all over him.

But I didn’t do any of those things. I worked my shift, I treated people well, and then I came home and dug up some more of my lawn so that I can turn it into a beautiful flower garden. The digging up the lawn part was very therapeutic, let me tell you.

We Aspies work very hard, just to get through the sensory world. And we have jobs and get married and raise children and do all kinds of great things besides.

We should all give ourselves a lot of credit. We are pretty amazing.

© 2009 by Rachel Cohen-Rottenberg

14 comments

Parenting, Grieving, and Letting Go

April 20, 2009 Rachel Childhood, Grieving, Parenting, Women and AS

I’ve been doing a lot of grieving lately. I’ve been missing my daughter’s childhood terribly. I’m not sure whether I’m missing the child she once was, or the person I once was, or both. I’m not sure there’s a whole lot of difference. Motherhood changed me from who I was before.

From the time I was in my early 20s, I knew that I wanted to be a mom. I didn’t have Ashlynne until I was 34, and then I fell in love with the whole thing. It wasn’t difficult. She was an amazingly easy baby. She even woke up giggling every morning. I kid you not. Giggling.

When I was on maternity leave, we’d go out to the park whenever the sun was out, and then she’d take a nap. Her dad would call from work to see how things were going. I’d tell him that Ashlynne was napping and that I was really exhausted. He’d ask me why I wasn’t catching up on sleep. I’d say, “I can’t. I’m just sitting here, watching her. She’s so incredibly beautiful that I can’t take my eyes off her.”

It seemed as though it would last forever. Of course, people warned me. “Enjoy it now,” they’d say, “because the time just flies by.” Rest assured that while I politely thanked them for their wisdom, I was smugly thinking, “They’re just regretting the fact that they didn’t pay attention to their children. My daughter’s childhood will not fly by. I will be paying attention.”

And I was paying attention. I was doing crafts and letting her use face paint on her tummy. I was homeschooling her, encouraging her creativity and her independence of mind. I was working at home as a writer so that she could see me whenever she wanted. I took pictures of just about everything she did. I kept journals. I kept every piece of artwork. I was determined to be there for every moment I could. And it just kept going and going and going and going.

But now, suddenly, it’s almost over. She’s driving. My car. On the highway. The fact that she only has her learner’s permit, and that my husband is always in the car when she drives, does not detract from how old that makes me feel. And how strangely unnecessary.

Oh, yes, I know. I’m still necessary. I’m her mom. I help her with her problems (the ones she tells me about). I listen. I empathize. I give good advice. I let her drive my car. (Did I mention that?) I read the awesome creative writing she does, and I look at the amazing photographs she takes. I give her money for the movies. I used to ask her whether she needed help with her homework, but I quit doing that last year. She told me that she was grown-up enough to take care of it herself. And she takes care of it just fine.

When did it all begin to wind down? The first indicator I had was the day last year that she said to me, “Mom, there are things about my life you do not know.” Once I got over the shock, I said, “Yes, you’re a teenager, and you deserve some privacy.” I even believed it.

Does that make me a good mom? Yes, it does. Give me an award and I’ll frame it.

But it won’t stop time.

And now, my daughter has crossed over from childhood to young adulthood. My friend Sue saw her a few weeks ago, and she cried when she saw what a beautiful young woman she’s become. When Sue and I first met, our daughters were 9. Now they’re 16. How is that possible?

I don’t know what to do with myself. I mean, I do lots of things. I blog. I do my community service work. I keep the house together. I knit. I do my art. I’ve relearned Torah cantillation. I see my OT. Now that the spring is here, I’m gardening, which I love. In fact, I spent much of yesterday digging and weeding and transplanting.

But everything is different now. Everything I did before was in the service of being Ashlynne’s mother. It gave me a focus—spiritually, emotionally, physically, and intellectually. When Ashlynne was born, I thought, “When she’s 18, I’ll be 52. That’s a long time away. I’ll be old by then.” Now I’m almost 51. No more babies. No more intensive child-raising. No going back. Only forward. But to where?

I can’t work anymore. There is no new career. For most of my life, I powered through my sensory overload, anxiety, and general Aspie confusion with all the willpower and tenacity at my disposal. I worked full-time, homeschooled, and did enough honest labor for three or four people. My last manager used to joke that when I had the flu, I worked at normal human speed.

I worked from the time I was 17 until I was 47. And now, I can’t work anymore. I lived in defiance of my neurology for 50 years. I can’t do it anymore. My husband says I’m like the Road Runner in the cartoon. Everything was fine, even when he ran himself right off a cliff. Even then, he could still run in mid-air. Until he looked down.

When I discovered my Asperger’s, I looked down. It’s a good thing I did. But now, all of a sudden, I’m an Aspie with a young woman for a daughter. How did that happen?

These days, I seem to vacillate between hope and grief. Yesterday, I was sitting on my front porch, and the little girl who lives across the street came over. Because our family is new to the neighborhood, we’re just getting to know our neighbors. She introduced herself and told me she was eight years old. We talked a little, and then she skipped down the street with her dog. It was a wonderful, reassuring moment. There are still little kids around. They’ll come over and talk a bit. I’m still in the flow of life.

And then I realized that half of Ashlynne’s life ago, she was eight, skipping down the street like that little girl. I got really teary, just as I am right now.

I’m certain this grieving is all very normal. Our kids are only on loan to us, so the grieving is inevitable.

Is it worth it? Yes, even with the grieving, it’s worth it. All of it.

© 2009 by Rachel Cohen-Rottenberg

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Therapeutic Monday

April 20, 2009 Rachel Hearing, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Brushing, Therapeutic Listening

The Therapeutic Listening program is going very well for me, and I’ll share some experiences below. At the end of my post, I’ll also have some information about a possible alternative to Therapeutic Brushing.

But first, today’s visual.

To explain the difference between how neuro-typical people and Aspies handle sensory input, Tony Attwood employs the images of a bucket and a cup. Our neuro-typical friends, he says, have a sensory bucket, capable of holding a great deal of sensory information. Those of us on the spectrum, however, have a much smaller vessel—a cup, which gets filled a teensy-bit more quickly.


Just before Passover, my husband made an offhand comment about my sensory vessel being a thimble. At work the next day, I just happened to run across a very nice ceramic thimble. I put it on our seder table as a reminder. So here is my sensory vessel, photographed next to a very small bottle cap for scale.

And now, onto the therapeutic ways I am attempting to replace a thimble with a cup.

Therapeutic Listening
So far, I am able to listen to the CD for 30 minutes/day while lying under my weighted blanket. I generally fall into a deep sleep after a half hour of listening, and I wake up an hour later wondering what day it is. I don’t think that’s the primary purpose of the exercise, but I appreciate it nonetheless.

In terms of intended effect, I am seeing some small progress already. For example, at work the other day, I was looking at some clothing. To my left, a staff person was talking excitedly with a friend she hadn’t seen for awhile. To my right, a man was laughing loudly over an outfit that two women wanted him to put on. I had the following reactions:

1. I was not jarred or annoyed by the man laughing loudly, even though he was only about 6 feet away from me. In fact, I smiled to myself. Weird, but true.

2. I did not experience both conversations in stereo. I tuned out the first conversation because I was enjoying the laughter in the second conversation.

These responses are highly unusual. I generally get very irritated by loud people. And it’s almost always impossible for me to tune out one conversation in the service of another. I was able to do so at the store because only two conversations were going on in an uncrowded space. With more people, in closer quarters, all talking at once, I still hear everything at the same volume—the one marked “Very High, and Why Do You Look So Alarmed?”

I also noticed that I was able to pick out a line from song that I’d been listening to for weeks. I have a terrible time hearing song lyrics, but all of a sudden, this one line just sounded loud and clear. Kinda cool.

In general, I’m becoming more aware of the effect of sound on my nervous system. Usually, I’m so fascinated by visuals that I don’t really notice my body’s response to sound until I’m overloaded. But yesterday, when my husband and I were going out shopping, something changed. As we were walking down the street, four guys driving VERY LOUD Harleys drove past us and gunned their engines as they were idling. (Don’t you hate that?) My first response was to feel very angry, as though they were gunning their engines just to piss me off. Then, I noticed that my ears and head felt assaulted, and that my stomach was churning. After the motorcycles were gone, I stumbled over to the nearest wall and tried to catch my breath. When we got into the sneaker store (which was pretty quiet and calm), the stomach churning stopped.

So, some small (but welcome) progress on the auditory front.

An Alternative to Therapeutic Brushing
A friend in Minneapolis, who is an OT, wrote to tell me about an alternative to Therapeutic Brushing. It’s called “hand hugs,” and consists of someone using their hands to apply pressure to the arms and lower legs. I’m told that it’s a powerful technique, so do not try it without an OT showing you how to go about it. Apparently, Therapeutic Brushing does not work for many people, so if you’re having difficulties with it, hand hugs might be an alternative. I am going to ask my OT about it the next time I see her.

And now, I’m going to go take a nap…I mean, listen to my Therapeutic Listening CD. :-)


© 2009 by Rachel Cohen-Rottenberg


 

4 comments

I Finished It!

April 16, 2009 Rachel Fiber Art, Happiness, Making Art, Visual/Spatial Skills

My sweater, that is. My very first sweater!

I learned so much from working on this sweater. I figured out how to shape a collar, how to block the pieces, how to knit the shoulders together, and how to seam. I had planned to get help from the nice lady at the yarn store, but then I decided it would be more fun (and a better learning experience) to do everything myself. Typical Aspie, I know, but what can I do?

It’s actually chilly enough tonight for me to wear it. Our mornings have been below freezing lately, so I might get a little more wear out of it before spring begins in earnest. I’d much rather have the spring start already, but since it’s taking its time, the sweater is a nice consolation prize.

© 2009 by Rachel Cohen-Rottenberg

7 comments

Sleeping, Listening, and My Fourth OT Visit

April 15, 2009 Rachel Anxiety, Hearing, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Sleep, Therapeutic Listening, Vestibular System, Weighted Blankets

Note: For posts about previous visits, including my sensory assessment, see the Occupational Therapy category, to the right of this post.

After receiving so many wonderful ideas from all of you about my sleep resistance dilemma, I went to see my OT on Monday. The first thing she had me do was to write out a list of objectives for the therapy. A list! I was so happy.

Objectives

  • To stop resisting sleep by eating and watching TV.
  • To reduce auditory overload. (Auditory overload seems to be the most intense for me, followed very closely by visual and vestibular overload.)
  • To do the grocery shopping one day per week, every week. (My husband does most of the grocery shopping these days.)
  • To deal better with changes to my routine. (I don’t get upset with people anymore when plans change, but I still get very stuck and have difficulty adapting.)
  • To keep up with OT tasks, such as exercise, singing, and drumming.

We began working on the top two issues on the list: sleep resistance and auditory overload.

Sleep Resistance
We talked about my sleep issues from a sensory point of view. My OT feels very strongly that I need to reframe the way I see winding down, ending the day, going to bed, and sleeping. Right now, I resist all of those things. She said that I need to frame all of them as being very positive. Sleep is the time that our bodies regenerate cells. Sleep provides rest for the immune system and for the nervous system. Both systems are key to the health of the body and to the enjoyment of the daytime hours.

We then discussed ways to take care of my sensory needs so that I don’t try to calm myself by watching TV and eating too much. It’s clear to me that what calms my nervous system is a lot of physical, tactile pressure, like the pressure of a weighted blanket or the vibrations of the Thumper. On Passover, I fell asleep under two weighted blankets—30 pounds of pressure. Since I’d like to start going to sleep earlier, my OT suggested that in the evening, when I imagine the best possible place in the world to be, I imagine lying underneath 30 pounds of weighted blankets at 10:15 pm! Talk about reframing. Given that lying under weighted blankets feels a little bit like heaven, I think I can do it.

As we talked about the process of replacing one routine with another, my OT was very adamant that I not completely ditch the old way of doing things until I add something more powerful to it. My tendency is to try to jettison an entire routine before I’ve started on a new one. The results are usually not good. So this time, for example, I will not take away chocolate without giving myself something that works better. In other words, I need to respect that I am in a transition. Transitions are difficult, but I’m willing to put some energy into this one.

I’ve decided to make some changes. Over the past couple of days, I’ve taken a look at my daily list and given more attention to the times for my late afternoon and evening tasks. According to the list, I have different self-care tasks and chores to start by 4 pm, by 6 pm, and by 8 pm. Up to now, I’ve been getting the tasks done, somehow, but I’ve paid virtually no attention to the time at which I get started. For example, sometimes the dishes get done at midnight, even though according to the list, they should get done by around 8 o’clock.

In addition to keeping better track of my present tasks, I added a new task, which is to make myself a very weird but useful concoction of mashed bananas, soy powder, and tahini at 10 pm. I used to eat this little concoction when I was on an elimination diet to weed out food allergies and sensitivities. It always helped me to feel full so that I could fall asleep. So, on Monday night and Tuesday night, I had this lovely dish and also allowed myself a small piece of dark chocolate. On Monday night, I feel asleep at 10:30 pm, woke at 4:20 am, and then meditated myself back to sleep until 6 am, when my alarm went off. On Tuesday night, I fell asleep a bit later, around 11:15 pm, woke up again at 4:20 am (not sure why, except that perhaps the heating system was coming back on), and then fell back to sleep until about 7 am. Not too bad at all. I didn’t watch TV either night.

I can see that this whole transition is going to be a one-day-at-a-time proposition.

Therapeutic Listening
After our conversation about sleep, my OT and I went into the gym and began the Therapeutic Listening program. The goal of the program is to help me filter out sounds in my environment so that they don’t feel like they are all rushing in at one high volume. It involves using a special headset and a series of CDs.

While lying under a heavy weighted blanket, while standing up on a swing and rocking laterally, and while rocking laterally on a peanut-shaped physioball, I listened to part of a CD called Mozart for Modulation. The makers of the Therapeutic Listening program take pieces of music and change them in ways that work the muscles in your ears. The music is supposed to be in the “background” to make your ears reach for some of the sounds, so I heard it at a low volume (from 2-4 on a CD player, without any bass boost), and I could still talk to the OT without needing to speak loudly. I was supposed to listen to the music while not actually concentrating on it (not so easy for an Aspie), so my OT had me swinging and rocking while I talked to her about, well, whatever—my daughter as a baby, what her sleep patterns were like back then, and a lot of other stuff I don’t remember.

Listening, talking, and moving were a lot to do at once, and I felt pretty tired and disoriented by the end of the session. My system really resists that amount of multitasking. But the OT said that the point of the therapy is to ask my brain to attend to several things at once without getting overloaded. I overloaded this time, but the goal is to begin to reduce the overload, so I’m willing to commit to this program and see whether it helps.

I brought home the CD and special headphones. I don’t have a portable CD player, and my OT said it was okay to listen to the CD on my computer, as long as I wasn’t watching the screen. (She said that, under no circumstances, should I listen to the CD while driving or watching anything on a screen. I don’t know what happens exactly, but it doesn’t sound good.) I was supposed to combine movement with listening to the CD, but right now, the only way to move and listen at the same time is to put the computer at the foot of my bike while I’m working out. I really don’t want to do that, because I love the routine of biking and singing my favorite songs. My OT agrees that I shouldn’t interrupt that routine.

So yesterday, after work, I came home, got myself organized, lay down under my weighted blanket, and listened to 20-30 minutes of Mozart for Modulation until I fell asleep! I really enjoyed lying under my weighted blanket in the late afternoon and listening to the CD. It was the first time that resting felt like a good thing, because my mind was occupied with something other than my own constant thinking. Since it feels so nice to me, my OT said that once a day, I should listen to the whole CD while resting, and then listen to it again at some other point, while I’m moving around. Moving around can include walking, eating a meal, knitting, making mobiles, or doing the dishes. The goal is to activate and integrate the visual, auditory, and vestibular systems. The CD is nearly 75 minutes long, so I’ll need to work up to listening to the full CD twice a day.

[Correction: I just heard from my OT, who reads my blog. She said that I only need to listen to the CD for 30 minutes, twice a day, with at least three hours between listening sessions. She said that the beginner CDs are 30 minutes long, and that she had forgotten how much more music was on the one she gave me.]

Of course, I finished off the OT visit with the Thumper, and this time, I could feel the vibrations in my teeth! Very cool.

© 2009 by Rachel Cohen-Rottenberg

8 comments

Sleep Resistance, Anyone?

April 12, 2009 Rachel Anxiety, Childhood, Food, Girls and AS, Sensory Processing Issues, Sleep

I’ve been reading lately about Asperger’s and sleep disorders. From what I can gather, the problems fall into two categories. Some Aspies can fall asleep without a lot of trouble, but wake up several times during the night. Other Aspies have great difficulty falling asleep, but few problems staying asleep. At any given time, an Aspie can have one difficulty or the other, or a combination of both.

My Life as an Insomniac
I’ve experienced both types of difficulties, but my biggest challenge has always been falling asleep. As a child, it took me 2-3 hours to fall asleep at night. I had all kinds of ways of passing the time. My favorite was to hide a small transistor radio under my pillow and listen to talk shows about baseball or hockey. I’d turn the volume down low so that my parents couldn’t hear. In the absence of a radio show, I’d create an elaborate fantasy in my mind about becoming the first female baseball player and pitching a perfect game in the World Series. (For details about this particular portion of my interior life, see my earlier post.)

Outside of baseball and hockey season, I’d run through all the songs from Mary Poppins or The Wizard of Oz in my mind. We had LPs of each, and I’d listened to them so many times that I could recreate them verbatim in my head. If I were still awake, I’d make up stories about being adopted by some all-American family, like The Brady Bunch. This particular pastime would generally put me to sleep.

In the midst of the radio shows, the musicals, and the hope for a TV family, there was a constant anxious undercurrent. The only way I can express it is to say that I was just plain afraid to fall asleep. Specifically, I was afraid to lose consciousness. As a child, I was sure it would hurt to drop from consciousness into sleep, rather like falling from a second-story window onto my head. I used to go around in circles, believing that the longer I stayed awake, the worse it would hurt to fall asleep. Of course, the fear would only increase the wakefulness, and the wakefulness would only increase the fear.

As an adolescent, the problem became worse. High school meant loads of homework, constant sensory overload, and an alarming increase in the dysfunctionality of my home environment. I’d routinely stay up studying until 3:00 or 4:00 in the morning. I don’t think I was really learning anything. I was just keeping myself awake by staring at print and taking notes. Of course, having to get up a few hours later for a 7:30 bus didn’t help my stress level at all. By the time I left home, I was already chronically and painfully insomniatic.

As a young adult, I struggled with this condition for the next ten years. Not only was I unable to fall asleep easily, but I also started waking up in the middle of the night and often had difficulty getting back to sleep. For a short time, I used over-the-counter sleep remedies, otherwise known as The Pills From Hell. They suppressed my REM sleep, so although I slept, I woke up the next morning stressed from not having dreamt. The stress created so much pain in my body that I continued taking the pills just to fall asleep, which led to a vicious cycle of increasing stress, increasing pain, and increasing insomnia. The cycle ended two weeks later, when I finally realized why my mother’s friends had gotten addicted to sedatives. Never sleeping ever again was better than the alternative, and thus my two-week foray into the land of sedative medication came to an abrupt and bitter end.

I continued to struggle until 1987, when I was a graduate student and went to UC Santa Cruz for a weeklong conference. After three terrible nights of not sleeping at all, I drove myself to the emergency room, signed myself in, and told the attending doctor that he had two choices: give me pills to help me sleep or hit me over the head with a hammer. He gave me the pills. They were tricyclic antidepressants called Amitryptiline, and he had used them himself when he’d come back from Viet Nam in a state of traumatized exhaustion. After taking the first one, he’d slept for two straight days.

That sounded good to me. So I took the first tablet at 8:00 that night, and the next thing I knew, it was 6:00 the next morning. I had fallen asleep easily, I had slept through the night, and for the first time in my life, I felt happy to wake up and start the day. My heart was open, the birds were singing, and I was connected with everyone and everything. I felt, for lack of a better word, normal. At least, a lot more normal. Okay, a little more normal, but in a major way: I understood why other people got out of bed and looked forward to the day.

Fast Forward to the Present: Fighting Sleep
I’ve taken the same medication for over twenty years, and I no longer suffer from chronic insomnia and its associated physical and mental pain. The medication I take is non-addictive and non-narcotic. It allows me to get gradually tired and sleepy, like a, um, normal person. That’s the good news.

The bad news is that I now resist that effect of the medication. I resist going to sleep. Some people have a very good nighttime ritual, with a routine bedtime and everything. Some people can’t wait to get under the covers. Not me.

I’m okay until about 10:00 at night. I’ve generally had a good day. I’ve worked out, eaten healthy food, drunk plenty of water, spent time with my family, gone out to work, and immersed myself in writing or singing or art work. I’ve taken very good care of myself. Then 10:00 pm comes, and I stumble off the path. Consciously and willfully.

It starts with turning on the TV and watching some detective show, like Law and Order or CSI:NY. While I’m watching the show, I start getting hungry. At least, that’s what I tell myself. But I’m not really hungry. It’s more like my head saying, “Enough with the healthy food. Enough with the exercise. Enough with taking care of yourself. Let loose. Eat just to feel the food in your mouth. Eat whatever you want. In fact, bring up a spoon and a bowl, and eat in front of the TV, so you can feel worse and worse about the poor dead people on the show, and you can eat more and more to feel better. Won’t that be fun?”

That’s how it starts. If I’m very lucky, I can extricate myself from the TV by 11:00. You’d think by that point I’d be ready to call it a day, but you would be wrong. I come downstairs, and then I begin this strange, repetitive, non-functional routine (ever heard of those?). It consists of first going to the pantry and eating, in succession, some spoonfuls of almond butter (hmm, smooth and crunchy and healthy), some spoonfuls of tahini (hmmm, smooth and smooth and healthy), and some spoonfuls of granola (yum, refined sugar and crunchy stuff, too). Then it’s time to check the freezer, where I eat, in succession, spoonfuls of each kind of soy ice cream, spoonfuls of any other kind of ice cream, and then some chocolate. If there happen to be any large chunky things in the ice cream, like pieces of Snickers bars or cookie dough, all the better. I can begin excavating.

By this point, it’s about 11:30, and I’m almost literally stumbling around because I’m so tired. But I am determined to stay awake. So I go through the whole routine again, telling myself that I’ll just eat one more thing, and then that will be enough. It never is, of course. I finally have to close the freezer door and admit defeat. Whatever it was that I was searching for in the kitchen simply isn’t there. I could have avoided the entire last hour and a half and just gone to sleep.

But I never do. I’m like a kid again, afraid to go to sleep, afraid to let go of the day, afraid to lose consciousness.

Up to now, this problem hasn’t felt insurmountable. Lately, though, as I get more in tune with how the Asperger’s affects me, this strange late-night TV-and-food ritual has begun to make me feel literally sick. I go to bed feeling congested and sick to my stomach, and I wake up sick to my stomach and not wanting to eat or drink a thing.

I’m not sure how to work out of this pattern. I’m beginning to see its cause, however. Going to sleep means that I have to put in my earplugs, close my eyes, and stop ordering my world. I have to stop tracking and translating all the visual and auditory chaos I work so hard to keep in order.

How do I stop working so hard? How do I turn off the hypervigilance, the need to scan my environment and notice all its details? It feels like it hurts to stop. And I’m afraid. What will happen to the world when I sleep? What will happen to me? Will the chaos swallow me up? Will I awaken to a world that is completely overwhelming? Will I be able to put it back together?

So I use food and the TV to zone out while staying awake. I’m not working quite so hard. After all, the TV is creating its own order, and the food is just sitting there, waiting to be eaten. But I’m still vigilant. I’m still working. And ultimately, I have to go to sleep, and it never gets any easier.

There must be a better way.

© 2009 by Rachel Cohen-Rottenberg

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