Archive for Anxiety

Toward a New Sense of Belonging, Part 5: Self-Acceptance

May 24, 2009 Rachel Anxiety, Belonging, Communication, Community, Disabilities, Gravitational Insecurity, Happiness, Sensory Processing Disorder (SPD), Sensory Processing Issues

Thank you all for your honest and insightful words in response to my last post. I feel so supported and appreciated. In the world of autistic people, I can finally feel comfortable being myself. I can speak from my heart, I can say what’s on my mind, and I can know that it will be okay. After a lifetime of anxiety about saying the right things and wondering whether I’ll ever be accepted by a group of people, your acceptance and appreciation of me is a great gift.

In the process of reflecting on all of your responses, I’ve come upon a new realization. If I feel at home with myself and accept myself as I am, then I can continue to feel at home with other people who experience the world as I do. The key to developing a new sense of belonging is to cultivate a new sense of self-acceptance. As LizzieK8 pointed out so succinctly, “Accepting who you are is really the next step.”

For most of my life, the road to self-acceptance has been part of my spiritual path. I’ve done some good, useful work on this path, but I’ve never felt sufficiently grounded. In these past few days, however, my spiritual path has come down to earth and into my body. Walking that path means paying attention to the minute particulars of what I can do from day to day, understanding the work that I can’t live without, and getting a clearer sense of the kind of help and support I need.

The hardest obstacles on the path are all the negative connotations of the word autism. Like most people growing up in the larger culture, I was told long ago that autism is a scary word. The word suggests so many things that I now know to be false: that I don’t have feelings, that I’m not quite whole, that I’m “less than” everyone else, and that my family is to be admired (and pitied) for putting up with me. I know that this nonsense is all untrue, but undoing it is very hard work. Once a lie comes in and sets up house, it takes a lot of doing to root it out.

So, I’ve been looking at the internalized negative messages about my autistic traits, and I’ve started rewriting those messages. My goal is to empty them of their power to grind me down. Here are a few examples of the challenges that I’ve struggled with over the past few days, and the steps I’ve taken toward accepting who I am:

1. I cannot think clearly when other people are around, especially if I think that people are going to interrupt me.

It’s not just that I need time alone to write my blog posts. It’s that I need time alone to write a grocery list. I have a poor working memory and difficulty sequencing tasks. Both challenges are common and significant aspects of AS. 

Regarding grocery lists, I have a strategy for making sure that each member of my family gets what he or she needs. I’ve made two very complete lists of all of our staples. One list is for my daughter’s food preferences, and the other list includes the edibles that my husband and I like to have around. I take the lists, look around the kitchen, see what we need, and write it down. Even by myself, it’s difficult not to get distracted by a hundred other things, but if someone else is in the room, it’s like running a sensory obstacle course. As Saja put it, “It’s like my head is filled with sand or buzzing flies or something, until I’m all alone, and then my thoughts can flow.”

In the past, I’ve figured that I was just plain stupid, hopelessly broken, extremely lazy, or not working hard enough on my therapy. Now, I realize that I have a Pervasive Developmental Disorder, otherwise known as a high-functioning form of autism called Asperger’s Syndrome. Doesn’t that sound ever so much better?! Don’t I feel just wonderful now?! The negative connotations of all these words send up some very uplifting and useful thoughts: Not me. I’m smart. I’m not one of those people.

Well, I reply, I am smart, and those people are my people, thank you very much. My people show care and concern when one of us feels like she’s sinking. My people use their minds to try and figure out solutions to the problems we share. My people say things so straightforwardly that it shocks the less autistically wired. My people are not broken, not crazy, not heartless, and not stupid. My people are…just like me.

So…where was I? Oh, right, the grocery list. When I was writing down the grocery list this Friday, my husband started to ask me about something. I was tempted to try and think about two things at once, because, after all, I’m smart. But I didn’t. Instead, I had the presence of mind to say, in a very straightforward and friendly voice, “I can’t answer a question and do the food list at the same time.”

Simple. No judgment. Just a statement about what’s true. And my husband’s response was, “Oh, right, I forgot.”

What a relief. The more I can articulate what’s going on in a neutral way, the better I do at accepting it as a part of me.

2. I have developed a complete aversion to sweeping the floors and cleaning the bathrooms.

I’ve been doing these tasks all my adult life, and it’s been making me progressively more irritable, grouchy, and generally unpleasant. I thought I was just lazy and immature.

I’m not. Having an AS and an SPD diagnosis, I finally understand the core of the problem. It’s called severe gravitational insecurity. That’s what my OT calls it, and she has a license and everything. The problem is that when I start to move my head through space, I can’t tell where the ground is, so I don’t have a feeling of stability. Moving my head anywhere except in a line with the rest of my body is extremely disorienting.

Sweeping means that I have to bend down to look under the bed. It entails moving furniture and bending over to see what’s behind it. Cleaning the bathroom means bending down into the tub. No wonder I get grouchy and irritable. It’s my nervous system’s way of defending itself. It’s as though my nervous system is saying, ”Um, whoa, excuse me, please don’t do that thing you do with your head in mid-air and a sponge in your hand.”

So, given that my nervous system and I are trying to be friends, I’m about to do something I said I would never do: I am going to find someone to clean my house.

Trust me, this is big. I grew up in a neighborhood in which many people hired housekeepers, and my mother was very proud of the fact that she cleaned her own house. I’ve inherited that pride, and I’ve become a reverse snob about it. But I really have to let go on this one. My husband did the cleaning on Friday, but that just can’t go on indefinitely. He’s 64 and perfectly healthy, but he’s not getting any younger, and I don’t want him shouldering all these responsibilities. Since I’m dealing with an actual, real-life disability, we need to start getting used to the idea that we need assistance. We need to start calling in support now.

3. I’m about at my wit’s end with auditory overload.

I feel so crowded and so overstimulated by sound that my nervous system is regularly going haywire. It happens everywhere outside my house, especially now that people are spending more time outdoors. And at the store, there is a music speaker directly above the jewelry case where I work. At first, I’m rockin’ to the music, but pretty soon, it’s enough to make me weep.

So, given my acceptance of the fact is that I’m autistic and that sound is really hard for me, I’m considering wearing earplugs when I’m out in the world. Yes, earplugs. This weird sister just got a little weirder. I’ll still be able to hear enough to know whether someone wants to speak to me, and if they do, I’ll take out one of the earplugs and listen. I mean, what’s worse—someone thinking I’m odd, or my head feeling like it’s going to explode? Gee, let me see…

I’ll let you know how it goes.

4. I feel really awful and very insufficient when my husband picks up the slack for me.

Luckily, I’m beginning to realize why. Read carefully, because it’s weird: I actually think, and I am not lying, that basic tasks are as difficult for him as they are for me.

Of course, they aren’t. He has his limits, but going to the grocery store and chatting it up with people is fun for him. And he likes cooking, too.

So why do I share Saja’s experience of having such a loving, sensitive, supportive husband that it makes me want to weep? It’s because I’m used to driving myself relentlessly in my quest to be “normal,” all the while denying how much work it takes to navigate through the sensory world. Over the course of my life, I haven’t been as loving, or as sensitive, or as supportive toward myself as I’d like to think.

And then, one day, out of the clear blue sky, my husband comes along and says, “I love you just as you are, and I can help you take care of things,” and it just doesn’t compute. At all. Fortunately, I’m learning that it doesn’t have to compute. I just have to stand there and accept that my husband is actually speaking the truth.

After all, as one reader said to me, neuro-typical people who love, respect, and support their Aspie spouses and children have the same difficulties with belonging as we do. Because families with autistic people are so different from what most people consider normative, our neuro-typical loved ones are left standing apart in the larger world. They support us in ways that ordinary people can’t fathom. They have patience about things that other people consider impossible—like having a spouse or a child who has meltdowns. They try to understand our challenges, they know how hard we work every day, and in the best of times, they don’t expect us to be “normal.” Lots of them don’t even think that something called “normal” exists. And so, they don’t fit squarely in the NT camp, and they don’t fit squarely in the AS camp, either.

But I always feel that they are an integral part of who we are. They’ve freely consented to come with us on this journey. They’ve thrown in their lot with us. They belong here, too.

© 2009 by Rachel Cohen-Rottenberg

15 comments

Toward a New Sense of Belonging, Part 4: What’s Next?

May 21, 2009 Rachel Anxiety, Belonging, Communication, Community, Friendship, Sensory Processing Disorder (SPD), Sensory Processing Issues

What’s next? I have no idea. I’d hoped to say something comforting and insightful about where to go from here, but I’m full of profound sadness, loneliness, and doubt today.

I’m looking back at all the times that I thought, “This time, everything will be okay. I’ll just change my house/neighborhood/community/job/synagogue/therapist/diet/exercise program, and I’ll fit in. I’ll belong. Everything will be all right. All this struggle will be done.”

Onward and upward and all that jazz. Living in the land of hope, where my therapist told me that I was going to soar. She gave me so much hope. I can’t blame her. I imagine it’s worked a time or two for other people.

But it didn’t work for me. And in these last few days, I’ve realized that I’ve spent my whole life trying to be an NT, and that working like crazy at my therapy was part of it. Now that I can’t be an NT, what do I do? I only know what I can’t do. I can’t go to my daughter’s concert tonight. I’d give almost anything to leave the sensory overload at home and be there. She and her best friend are not just in the chorus; they’ll be in front, singing their hearts out.

But I can’t go. The sensory overload would happen in the first five minutes. My stepson is taking a video of the whole concert to distribute to anyone who wants it. So, I’ll get one of those and at least get to see the performance that way, but…still. You know.

Last year at this time, we had just moved to Vermont, and I had all kinds of plans. I was getting dressed up for work, going to the movies, going out for dinner, chatting with the neighbors, and feeling like I was finally standing in the sunshine. I thought that the hard times were over, at least for a little while.

But it didn’t work out that way. Six months after we moved here, I got the AS diagnosis, and its implications are all hitting me very hard right now.

I feel so bad for Bob. He didn’t sign up for this ASD stuff. He didn’t sign up for a wife who goes shopping at the co-op for a half hour and then needs to lie down under 30 pounds of weighted blankets for the rest of the afternoon. He didn’t sign up for a wife who is afraid to try going to the movies anymore because the sensory overload of the sound, the visuals, and the people is so difficult to bear.

He says it’s all fine, that he doesn’t think anything is wrong with me, that he loves me, that he’s so happy with me, and that I do so much for him, even though I can’t see it. He says that he did sign up for all of this, for every bit of it, because that’s what marriage is about.

I know it’s true. And I know that if the roles were reversed, I’d feel just as he does.

But, still, it wasn’t supposed to be like this.

So, where do I go from here? Through the fog and the haze, I can see that there are situations that give me some sense of belonging, although with each of them, I feel very limited in what I can do:

1. Living in our neighborhood.

The positives: I like living on our little one-block road with very friendly, kind neighbors who respect one another’s privacy and don’t play loud music. That soothes me. It’s reassuring that I can have some nice conversations, so long as it’s between me and one other person.

What’s not so great: When a neighbor comes over to chat with both Bob and me, and I can’t keep up. Then, I don’t feel soothed. I feel sad. I watch the whole interaction take place, and I can see that the other two people are connecting in some way I can’t grasp, and that I’m out of sync. It feels truly and painfully awful, like I’m in some sort of invisible time capsule that no one can see but me.

2. Going to my volunteer job

The positives: Everyone seems to be very accepting of quirky people, and I’m becoming quirkier with every new day. People genuinely seem to like me there, even though I feel completely “other” all the time.

What’s not so great: Last year, I went there looking for friends, and somewhere down the line, maybe even paid employment. Now, I just go there, do my two-hour shift, try to be friendly and helpful, feel overloaded, come home, lie down under weighted blankets, and hope like hell that my nervous system calms down sometime before the weekend.

3. Connecting with people online

The positives: I love writing this blog, reading people’s comments, getting emails from readers, and responding to them. I also love reading other people’s blogs. I have made my first Aspie friends in the past year, people with whom I correspond by email on a regular basis.

What’s not so great: It all feels so…virtual. Except for a few photos, I don’t know what anyone looks like. And I definitely don’t know what people sound like. Although my visual and auditory systems can get overwhelmed, they also help me feel reassured, especially when it comes to belonging. I’m an artist and a singer. I love visuals and sound. They just have to be the right ones.

So, I’m left having to take a very, very big leap of faith that there are people out there:

a) whom I’ve never met in person,
b) whose names, in some cases, I don’t know,
c) who feel just as I do,
d) who accept me for who I am (whoever that is), and
e) who comprise an online autistic community, to which I belong.

Do I have that right? Is that what everyone else is attempting to do? Help me out here. This requires a huge leap of faith for me. I’m not good at those. (It’s the feeling of weightlessness that comes with the leap. So often, it’s been followed by a crash.)

And of course, as I write this, I’m thinking, “I hope these people don’t think I’m completely nuts. Should I even say all this?”

Yes, I should say all this. After all, it’s real.

I’m not the only one who feels these things—am I?

© 2009 by Rachel Cohen-Rottenberg

14 comments

The Words I Most Needed to Hear

May 11, 2009 Rachel Anxiety, Disabilities, Gravitational Insecurity, Happiness, Making Lists, Marriage, Meltdowns, Parenting, Sensory Processing Issues, Women and AS

Some momentous personal things have occurred since last Friday. It’s taken me awhile to know how to express what I feel about them. Although I woke up with a bad cold today, I’m feeling fairly lucid at the moment, so I thought I’d start describing the happenings.

Last Thursday, I made a big mistake that only I could see: I tried to do two things in the outside world in a single day. And worse than that, I tried to do them consecutively.

Before I left for my volunteer job last Thursday, my husband asked whether I could stop at the co-op after work to get him some more homeopathic medicine for his cold. I told him I’d try, and I felt the way I always feel about these requests: Totally Lousy. Lousy because it’s so hard for me to go to two different places in the same day, and lousy because I wish I could just say, “Sure, honey, no problem.”

In any case, I went to work, and then I went to the co-op. Outside, there were some really nice plants, so I bought a bunch, and then I went into the store and bought some medicine for my husband. Luckily, the store was quiet, so I didn’t feel completely overwhelmed. When I came home, I was tired, but that’s pretty normal after work, so I rested. The remainder of the day went along fine, and I felt great. 

Then, Friday came, and I had my first meltdown since my diagnosis in November. To understand why, you’ll need to understand that every Friday, we get ready for Shabbos (our Sabbath), which includes the following tasks:

1. Sweeping up the house (me)
2. De-cluttering the house (me)
3. Emptying the wastebaskets and recycling (me)
4. Buying the food for dinner (my husband)
5. Cleaning the bathroom (my husband)
6. Setting the table (my husband)
7. Cooking the food (my husband)

This past Friday, though, my husband was sick, and I started worrying about having to take on some of his tasks. That was the beginning of the meltdown: the worry. I knew I couldn’t do the food shopping myself and get the house cleaned up, so I offered to go food shopping with him. I figured that it would help us both. So that was the plan.

Nice plan. Except that then I had to figure out in what order to a) clean the house, b) get a shopping list together, and c) go to the co-op. But I couldn’t even get to the point of sequencing. Each task felt absolutely monumental. Like. Turning. A. Barge.

So, I started with what was familiar. I started sweeping. And as I started sweeping, I noticed that I was becoming more and more sensitized about how hard it is. I’m fine with taking the broom and moving it back and forth on the floor. But then, there’s having to pick it up and pull the dust bunnies out of it; somehow, having the broom upside down makes me dizzy. And then, of course, there’s having to bend down with the dustpan and sweep the dust bunnies into it. Serious gravitational insecurity moment. Just thinking about it makes me anxious. And then, the worst part is sweeping under the bed. Arghh. I have to get down on the floor on my stomach and kind of shove the broom here and there till I get all the dust balls. When I’m all done, I am one dizzy, disoriented human being.

When I realized how hard all this was going to be, I started to get really agitated. And when I get agitated, I start thinking really helpful thoughts, like, “Hey, Rachel, if you’re so smart, how come sweeping the floors is so hard, huh? Huh? HUH?” As my self-esteem started going down, my irritability started going up, until I was stomping around and angry at everything. When my husband committed the unforgiveable sin of moving the recyclables to the garage, the recyclables that I had planned to move myself, thank you very much, I just about had a cow. Fortunately, I was able to recover some sense of time and space, and say, “It’s not you I’m angry at. It’s me. It’s me. It’s me.”

Ultimately, I just broke down into inconsolable sobbing. The more I thought about how hard it was to sweep the floor, the more I thought that writing up a shopping list was beyond my skills as a human being. How could I possibly transition from one task to another in the state I was in? Especially when writing a shopping list required time and concentration that seemed impossible to locate at that moment. On a good day, each task feels like a big challenge. On the day following one in which I had pushed my limits, each task seemed beyond my reach.

Hubby tried to give me some comfort, but I just kept saying, “Everything feels so incredibly hard. Why does it feel that way? Why can’t I just sweep the room without getting dizzy? Why can’t I just make a food list and be done with it? I can’t stand it.”

And then he said the words that I’ve been waiting to hear all my life:

“It’s not your fault.”

I melted. What an incredible relief. It’s not my fault. I’m doing the best I can, and then some. I have to accept myself as I am. I need to stop apologizing for what I can’t do. It’s not my fault.

Wow.

Okay, hubby loves me as I am. He sees me clearly, and he loves me as I am. That’s very good. Cross that worry off my list. Done. I got it together to make the food list and go shopping. My husband even swept under the bed and swept up everything into the dustpan. We were both tired out, but we were in it together, and that put me in a much better frame of mind.

But then, on the heels of this major piece of wonderfulness, came the second worry: I don’t do enough for my daughter. I can’t cook more than a one-course meal because the sequencing is too hard. I can’t go to her concerts at school because the sensory overload is immediate. I didn’t go to the paintball place for her 8th birthday. And on and on like that.

I was right back in the soup. I felt like writing her a letter, apologizing for all the things I haven’t been able to do over the course of 16 years. I know, it’s a little much, but that’s how I was feeling. I decided that when she came back from her class trip, I’d talk with her about it. I’d try to explain why I am the way I am. She knows about the AS and SPD, but we haven’t talked about its impact a lot lately.

So, I was getting ready for this conversation when Mother’s Day came, and I thought, great, we’ll have our talk today, when everyone is in a good mood. And then, before I got the chance to initiate even the merest hint of a beginning of a conversation, my wonderful, loving, utterly fantastic daughter gave me a Mother’s Day card she had made.

And the card said, “Thank you for being such an awesome mom. Thank you for everything you’ve done for me. I love you so much.”

I couldn’t believe it. It was perfect. I said, “That’s so beautiful, Ash, and so much what I needed to hear.” And then my big strong teenager gave her little Jewish mom a great big hug.

I melted. Again.

So, in the course of 72 hours, I got to hear the words I most needed to hear:

My challenges and disabilities are not my fault.

I am an awesome mom.

It’s no coincidence that today, I’ve finally got this cold that’s been coming on and going away for months now, over and over. Until today, I’d start to feel sick, and then a few days later, it would turn into nothing. This would happen in two-week intervals, over and over and over.

Now that I’ve had these two weighty pieces of worry taken off my body and soul, I can get sick like a regular person, get over it, and go on with my life. That sounds pretty good, don’t you think? ;-)

© 2009 by Rachel Cohen-Rottenberg

11 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

12 comments

Success!

April 10, 2009 Rachel Anxiety, Communication, Happiness, Judaism and Jewish Life, Marriage, Sensory Processing Issues, Social Gatherings, Weighted Blankets

Well, I’m amazed, but I made it through our Passover seders in one piece, and I’m feeling pretty good.

On Wednesday, we were able to get all the cleaning and other preparation done with time to spare, thanks in no small part to all you wonderful people who extended so much kindness and support. On Wednesday night, we had a mini-seder for our immediate family–my husband, my daughter, and myself. We had the ritual foods, said the blessings, and then spent a lot of time singing songs from the haggadah.

We decided on a mini-seder because, a few years back, we had two full seders at our house and decided never to do it again. Basically, the first one left us running on fumes for the second one. So this year, our homemade, doing-it-our-way first-night seder was perfect for us.

We had invited guests over for our second-night seder, so yesterday, we got the house prepared. I set the table, got out the haggadahs, put out the seder plates, and made the matzo ball soup. My daughter helped my husband chop up apples and walnuts for the charoset (a mixture of apples, walnuts, and grape juice that my daughter could eat 24/7), and my husband prepared the chicken.

At one point in the afternoon, I began feeling very apprehensive and irritable, and it occurred to me that I needed to clarify my role in the seder. So I told my husband that since singing is very soothing to me, I would like to lead all the singing, while he could take charge of navigating us through all the ritual.

It took some time for me to explain to him what I needed, and it took some time for him to say that he didn’t want me to blame him if I had a bad time. Yes, I’m sorry to say, we’ve been there before with the blame thing. We’d go to a social gathering, and I’d feel excluded and expect him to make everything all right. When he didn’t, I’d get upset with him. This time, I reassured him that however the evening went, I wouldn’t blame him and that I wasn’t interested in tapping into that pattern again. Been there, done that, enough already. He felt reassured.

I then made one of the best decisions of my life, ever. I took the two weighted blankets we have, brought them up to my loft, put them on the futon, and laid down under 30 pounds of beans and fleece. Then next thing I knew, it was an hour later, and my daughter was knocking on the door, telling me that it was 6:30 pm and that everyone had arrived. I had actually napped! Usually, the best I can do before a social event is to lie down, concentrate on my breathing, and try really hard not to get a migraine or a stomachache. The nap put me in such a calm and grounded mood that I felt ready to meet the world.

There were seven people in attendance: my husband, my daughter, my stepson Elijah, our friends Julia and Tristan, my daughter’s friend Claire, and myself. Because Julia used to be the music teacher at my daughter’s school, she knew my daughter and her friend, and since my stepson teaches at the school, she knew him as well. So everyone there was connected in some way to everyone else. That made for a very good feeling.

There was quite a bit of ritual before dinner, and everyone seemed very engaged. Sometimes at seders, people show up out of obligation, or take on the role of tourist and just watch the proceedings. It can be very tiring to host a seder under those circumstances. Luckily, at this seder, everyone was there by choice and ready to jump in. I took the lead on the singing, and I had a great time with it. Julia is an artist by profession, with a beautiful singing voice, and when she didn’t know a song, she picked up the melody quickly and added some gorgeous harmonies. The dinnertime conversation was very friendly, and then we finished with some really fun seder songs.

I had thought that I’d need to take some breaks during the evening to fend off sensory overload. In fact, I’d planned on it. I had everything set up so that I could go and snuggle under my weighted blanket and calm myself down when I needed to. As it turned out, I didn’t need to take a sensory break. Instead, I found that the sensory protections were built into the evening.

First of all, I decided to wear my weighted OT Vest. I felt a bit self-conscious about wearing a 4-pound vest, but it was a damned sight better than getting a migraine, so I went for it.

Second, the social gathering was held together by a traditional structure laid out in a book. I had forgotten how much any kind of ritual structure wards off sensory overload for me. It always makes me feel calm because I know where I’m going. For Passover, it’s the same routine, every year, and for an Aspie, that is a Very Good Thing.

Third, I had a job to do, leading the singing, so that gave me a significant focus. There aren’t just a few songs scattered throughout the evening. There is at least one song on nearly every page. That held my attention and kept it from getting too diffuse.

Finally, I realized that I could do a lot of work with my hands, which is also very grounding for me. There were a lot of plates to bring back to the kitchen after the first part of the ritual, so as to make room for dinner. Plus, because dinner came in several courses, there were different kinds of food to bring back and forth. I took on the role of making sure that everyone had what they needed, and then I sat down to have dinner, too. Being able to get up and walk around was a good sensory break.

As for the “otherness” factor, it was definitely there. I was aware that I wasn’t keeping up with what people were saying, and that over dinner, with more than one conversation going, it was hard for me to hear all the words. I felt so comfortable with being an oddball, though, that I stopped things every now and then with “What did you say?” or “I don’t understand” or something equally honest about how clueless I felt. No one seemed to give it a second thought, probably because I wasn’t trying extra hard to be “normal.” I was just feeling comfortable being the weird Aspie at the end of the table.

After lots of very fun and raucous singing, we finished a little after 11 pm. Instead of being wired and exhausted and up till the wee morning hours, as I am after most other social gatherings, I actually fell asleep by midnight.

I couldn’t have asked for a better time.

© 2009 by Rachel Cohen-Rottenberg

6 comments

Thank You All So Much!

March 22, 2009 Rachel Anxiety, Communication, Meltdowns

Hey there, cyber pals:

I appreciate all of your comments about my recent visit to the doctor. Your observations have given me so much to mull over.

Ben, you make a great point about meltdowns being partially fuelled by the anxiety of having to face the same situation again. In fact, when I was talking with my husband about the doctor’s visit, I said, “I don’t ever want to go back there again.” It’s generally my first response to getting overwhelmed. The part that really gets me moving in the direction of a meltdown is the idea of having to face the situation again alone. I have a very difficult time asking for help from another person or saying that I can’t do something on my own. The Aspie aloneness, the sense of being apart, has accustomed me to thinking in terms of going everything alone.

John, I’m also the person who shows up at the party right on time and stands by the dip, eating things I shouldn’t. Perhaps you’ve seen me there? I also relate to your resistance to asking for help around the disabling aspects of Asperger’s. Many of us older Aspies have lived in sink-or-swim mode for so long, trying so hard to do everything right, that it goes against years of conditioning to let go and say, “I have a disability and need some reasonable assistance.” I’ve spent so much of my life trying to hide it all and act “normal” that simply coming out and asking for what I need feels distinctly like turning a barge.

Stat Mama, you’re right: if the situation becomes so overwhelming that everything in me says, “Okay, I’m out of here,” I should respect my instinct to flee. I often get stymied because I look at everyone else in a situation and wonder why I can’t handle things as well as they do. On Wednesday, I looked around the waiting room and here’s what I saw: an older woman making cute conversation with the children playing on the floor; the children’s mother reading a magazine; the person next to me sitting with his eyes closed; another older woman reading a magazine; and an elderly lady smiling at the children as they sent their germs in her direction. I’m looking at all of these people, who seem to be handling the situation like adults, and I want to jump to my feet and say, “Hello? Does anyone else value their time on this planet sufficiently to be really upset at waiting for an hour, or am I the only one—as usual?!?!” It would be good to remember that the impulse to do so is my nervous system defending itself and does not reflect upon my level of maturity or otherwise excellent manners.

LizzieK8, thanks for telling me about your experience bringing an advocate to the doctor’s office. It strengthens me in my resolve to bring an ally to potentially overwhelming situations.

Erin, I really appreciate knowing that you feel as I do about the kind of rudeness and disrespect I encountered, and that it’s not just an Aspie thing. And you’re right: these things happen because people don’t say anything about them. I definitely need to put my foot down. The question I’ve been wrestling with is “How to do it?”

Being a writer, I’m very partial to putting my feelings on paper. My husband is less than enthusiastic about this idea. He is afraid that a letter might get read days, weeks, or even months before the actual appointment and then get forgotten. He makes a good point.

My husband’s idea is that he should talk with someone in the office, either in person or on the phone, about what I need. Then, on the day of the appointment, he’ll call again, remind them of what I need, and ask whether they’re running behind. If they are, he’ll let them know what time we’ll be there for the appointment.

This morning, I realized that each of us can handle the situation in our own way. We can also simplify the entire process by asserting one basic fact: I am an autistic person. People might not understand what Asperger’s Syndrome is, or what Sensory Processing Disorder is, or why sitting in a crowded waiting room is beyond the pale for me, but everyone has heard the word “autistic.” They may not correctly understand what it means to be autistic, but the word will get their attention. Once we have their attention, the rest will follow. So, I’m going to write a (hopefully) short letter to be attached to the front of my file, and my husband will begin his conversations with the office staff using the words, “My wife is autistic and needs…”

After 50 years of overload and 20 years of migraines, it’s time to assert who I am and ask for the help I need.

© 2009 by Rachel Cohen-Rottenberg

2 comments

AS and Loneliness

March 7, 2009 Rachel Anxiety, Childhood, Loneliness, Marriage

Every now and then, my husband goes down to New York City for a few days to visit his father. I used to go with him, but being in the city became too disorienting and exhausting. I crave the familiarity of my home and my daily tasks, so I’ve stopped going on these trips. My husband tends to travel when my daughter is with her father for the week, so I am on my own for a few days.

Whenever my husband goes away, I get very anxious. For years, I used to melt into tears every time, like I’d never see him again. I’ve always had a lot of separation anxiety, throughout my life. Any kind of leave taking brings it up. When I was about 12 years old, I went on a weekend retreat and was homesick the entire time—which was especially odd, because home was not a great place. About twenty years ago, I moved across the hall at work from one office to another, and I got all choked up when I was taking my pictures off the wall. The fact that they would soon be on another wall about 50 feet away didn’t seem to matter. Any kind of change like that makes me sad.

Although I no longer get teary when my husband goes away for these visits, my ability to self-modulate pretty much goes out the window. At first, I think about how nice it will be to have some time alone after work. So I go to work and have my afternoon, and then I come home to an empty house. I’m so used to my husband being there that a chill comes over me when he’s not. The minute I close the door behind me, it’s as though I’m the only human being left in the world. It’s such a lonely feeling. I barely know what to do. I’ll eat something, check my email, maybe watch TV, but I’m on edge. I get more and more tense and wired, and I can’t fall asleep till the early morning hours.

The problem seems to be that I don’t carry anyone around with me in my mind. I don’t think that tomorrow, I’ll see a friend and tell her about the knitting I’m doing. I don’t look forward to what I’ll do, who I’ll see, what I’ll say, or what kind of experiences I might have. In my mind’s eye, I don’t see myself “spontaneously sharing” anything with anyone. I feel very cut off from the world.

When my husband is here, I feel so normal. He is the first person I’ve ever felt truly at home with. It’s as though I’d been in exile all my life, and when I met him, I finally came home—to everything. So when he goes, I feel like I’m in exile again.

I don’t like how vulnerable I feel. I don’t like needing anyone this much, and I don’t like knowing that someday, one of us will be gone and the other will be left alone. I feel so connected to him in a world that feels so strange to me.

I realize that loss comes to everyone. I wonder, though, whether we Aspies feel the possibility of loss more intensely than other people because a) we don’t like going out into the world to socialize and b) we feel like such oddballs most of the time anyway.

For me, being left alone for a short time resonates with the possibility of being utterly alone, always. And then, when my husband comes home, I can’t possibly imagine life being any other way.

Do others feel as I do?

© 2009 by Rachel Cohen-Rottenberg

15 comments

Nonverbal Communication and Anxiety

March 3, 2009 Rachel Anxiety, Childhood, Communication, Girls and AS, Mind-Blindness, Theory of Mind (ToM)

Anxiety seems to be very common for Aspies. I’ve struggled with it my whole life.

I’m realizing that much of my anxiety centers around the fact that I cannot guess what people think of me in any given situation. I can’t look at their body language, or their facial expressions, or their subtle nonverbal cues (whatever those are) and make any kind of educated guess. Simply put, unless someone says something outright, I can’t tell whether people like me.

Now, I know that this whole issue should be immaterial at my age. I mean, really. I’m not in high school anymore. But if I can’t tell what people think of me, I have two options:

1. Forget about the subject entirely.
2. Worry about whether I’ve completely screwed up.

Since I’ve been diagnosed with Asperger’s, I’ve found it easier to choose option 1. After all, I’m never going to fit in, so why concern myself with some ideal future in which I’ll belong? There will always be that strange, invisible force field separating me from most of the world. I’ve burned so much energy trying to belong—in academia, in the corporate world, and in religious institutions—that it’s a relief to realize that I’ll always be the odd one out. It’s a done deal. Now I can get on with my life. I can be myself. I can live with integrity. I can be kind to strangers. I can accept other people for who they are. I can love my friends and family. I can have my hyperfocus and my special projects and my general eccentricity. On a good day, it feels quite liberating.

But I’m finding it hard to break the habit of going to option 2. Usually, the anxiety is just a low rumble, but it’s there. I can look back and see that yesterday, people at work liked me. They smiled. They joked with me. They told me what a great job I’d done. But what about today? It’s a whole new day. What if today is the day that I screw up and have no idea that it’s happened?

My anxiety increases if I have to deal with any kind of misunderstanding, no matter how benign. When I misunderstand something, all of my alarms start going off. I think, “Oh no, what did I miss?” At such times, I forget that misunderstandings are common in life. That’s why there is a five-syllable word for them. We Aspies aren’t the only ones who misunderstand other people.

But consider this: Most people communicate nonverbally about 90% of the time. That means that 90% of the time, most people are communicating on a frequency that many of us Aspie folks cannot hear. And that makes this Aspie nervous.

Part of the anxiety is knowing the way that women communicate aggression. We don’t tend to express it like men. Men are very straightforward. Women manifest aggression very subtly. Ever notice the group of girls in the lunchroom looking at someone and giggling? Ugh. I was usually the person being looked at. I think. Or maybe not. Who knows?

I brought up this issue with my husband the other night, and he added a new wrinkle to the whole question. He said that most people do not make a judgment about whether they like someone or not. It’s mostly situational. If a situation is working well, and Person A does something that works for Person B, then life is good and Person B likes Person A. If Person A does not fit into Person B’s game plan that day, not so good. But nothing is written in stone (unless something major happens). Usually, it shifts from day to day.

Just thinking about this way of interacting makes me feel disoriented. It’s so foreign to the way I think. I usually scope people out and get a sense of their energy. I know when I’ve run into someone who is bad news. It doesn’t happen a lot, but when it does, my instinct tells me to tread carefully. And believe me, I ignore my instinct at my peril. If none of my alarms go off upon meeting someone, I generally like and enjoy the person.

Somehow, I don’t think I’m the only one around here who works this way.

© 2009 by Rachel Cohen-Rottenberg

11 comments
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