Journeys with Autism

You might remember that, a few weeks back, I wrote a post called Creating a Support Network. I had written down all the tasks that I needed help doing, and Bob and I were going to cobble together a list of people who could help me do them. Over the course of the month, however, we’ve realized that while we can enlist the help of others for regular, practical tasks (such as housecleaning and carpooling), we’re going to have difficulty finding help for other, less predictable tasks:

• If a task involves advocacy, finding someone is next to impossible; we live in a rural area, and the chances of finding someone sufficiently knowledgeable about adult autism are slim.
  
• If a task needs doing only once in a while, it will be very hard to find someone to be “on call” to do it.

So, we’ve shifted gears. We have someone cleaning our house once a week, and Bob is going to take care of making sure that the carpooling goes smoothly until Ashlynne gets her license. As for the rest of the tasks, I am experimenting with ways to do them comfortably, and if I can’t find a way, the task will have to go away.

Our Strategy List
Here’s how our strategy list looked as of Sunday night:

Resolved issues

1. Housecleaning.
2. Understanding home and non-profit financials.
3. Food shopping: Rachel shops at the co-op once a week for herself and Ashlynne.
4. Banking: Rachel has begun the process of transferring funds to our local bank.

Tasks for Rachel to try on her own (limiting each attempt to one per day)

1. Going to the therapist’s office.
2. Going to the stationary store, art supplies store, and other relatively quiet places to do errands.
3. Making deposits at the bank.
4. Bringing envelopes or parcels to the post office.
5. Picking up prescriptions and other items at the pharmacy.
6. Moving more funds to our local bank.
7. Finding out what tasks she can do online.

Issues that Bob will work to resolve

1.   Getting Ashlynne where she needs to go until she gets her license.
2.   Finding people in his network of friends to pick up prescriptions, drive, or do other “spur-of-the-moment” tasks when he is ill.
3.   Making an appointment with an attorney to create Advance Directives for Healthcare for both of us.

Issues on which we will improvise

1. Cooking meals. Bob does not mind cooking meals when he is well. For times that he is ill or out of town, we will begin to create an emergency cupboard of canned soup, macaroni and cheese, herbal tea, over-the-counter medication, and other items that will allow Rachel to make simple meals and have symptom-relief medicines available.

2. Accompanying Rachel to doctor or hospital appointments and advocating for her. No one other than Bob knows Rachel’s autism well enough to be a proper advocate. When Bob can be there, he will. When he can’t, Rachel will write a letter to the doctor or hospital ahead of time, stating her needs as an autistic patient (a quiet room in which to wait, sensitivity regarding sensory issues, and so on).

3. Making telephone calls. Bob will make these when he can. When he is not available, Rachel will make them only if necessary, and only so long as she gives herself sufficient time to prepare and to recover.

Adaptive Measures
I now have three—yes, three!—Peltor noise-reduction headsets:

• My original Peltor Optime 101 headset, with a Noise Reduction Rating of 27. I use this one at home when loud noises are coming in from the outside world.
• My new Peltor Optime PTL (Push to Listen) headset, with a Noise Reduction Rating of 25. I use this one for working at the thrift store.
• My even newer Peltor Ultimate 10 headset, in blue, with a Noise Reduction Rating of 30 (the highest for a Peltor headset, as far as I know). I use this one for walks and errands in the outside world.

I also have a number of “I can’t hear you” cards in my purse, explaining why I’m wearing a big headset, why I’m in the store (or bank or post office), and how I intend to pay for everything. If I’m going to become more self-sufficient, I’m going to have to continue my strategy of encountering the outside world as though I am deaf and mute.

I gotta tell ya, I’m lovin’ every minute of it. Well, almost.

People Have to Listen to Loud Music in a Pharmacy WHY?
Yesterday, I decided to try going to the local pharmacy and buying some supplies for our “emergency cupboard.” I knew that I might encounter an itty-bitty problem with LOUD MUSIC THERE, SO I WORE MY PELTOR ULTIMATE 10 HEADSET.

This pharmacy is unlike any that I have ever encountered. The number of employees and pharmacists present at any given time is almost always higher than the number of actual customers in the store. Most of the employees are behind a series of counters at the back, and they spend a great deal of their time on the telephone, taking orders for prescriptions. They all sit, stand, and move around in very close proximity to one another, all talking at the same time, all talking rather loudly, and all listening to very loud rock ‘n roll. The truly amazing thing about the people, though, is that when you come up to the counter, they are very focused, very friendly, and very helpful. Whenever I’ve gone there to fill a prescription, I’ve been so entranced by the mystery of how these people can actually work under these conditions and enjoy themselves that I forget what’s happening to my senses until I get home and stagger in the door.

So, when I set out yesterday afternoon, I knew my adventure might not last long, and as you might have surmised, it didn’t. The walk was wonderful. I could hear very little of what was going on around me. Then, I walked into the pharmacy. I was there for about five minutes, and I had put about five items into my basket, when I couldn’t stand hearing the music anymore. I felt as though someone were screaming right into my ear. Even with my headset, I felt like I was being assaulted by sound. I simply couldn’t concentrate. I finally just put my basket down and went home.

Once I had recovered from the fiasco at the pharmacy, I decided to order all the items online. I found a site that offers free delivery if your order is over a certain amount, and I got everything on my list. Then, I called my insurance company (yes, myself!) and arranged to have my regular prescriptions mailed to my house. If I need some other prescription once in a while, my husband, or my daughter, or a neighbor, or some other nice person will go and get it for me.

One task resolved. Onto the next one!

© 2009 by Rachel Cohen-Rottenberg

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

On any given day, venturing outside the walls of my house feels akin to entering a sensory minefield.

Of all the things that feel difficult, driving my car keeps rising to the top of the list. I’ve had a lot of resistance to driving for some time now, which is difficult when your teenager goes to school an hour away.

My daughter has a friend nearby who goes to the same school, so our two families share the driving. My husband does our share of the driving, and the other parents do the rest. Occasionally, my husband is out of town when my daughter is with me. At those times, I am perfectly capable of getting up at 6:00 am, getting in the car by 6:45 am, getting my daughter to the bus stop by 7:15 am, and then driving home.

Perfectly capable. It all goes swimmingly. The problem is that I cannot do this routine every day. When I have to do it, I do a lot of advance planning to clear my schedule for the rest of the day. If I can’t clear my schedule, and I have to do something else in the world, the next day I’m pretty exhausted. I stay home, and if I’m lucky, I might remember to drink enough water.

For some reason, driving feels especially daunting. It must be all the attention that I have to give to so many things at once: other cars, stoplights, pedestrians, work crews, construction vehicles, and road signs. I simply must read all the road signs. Every. Single. One. Then, of course, there are all the various stores, and advertisements, and strip malls, and signs with print and flashy graphics by the side of the road. Of course, I simply must read all of the print I see flying toward me, even though I will never go to MacDonald’s or to my local Chevy dealer. When I think about driving, the sensory minefield image becomes especially vivid.

Now, it’s true that I drive an hour for my OT appointment, but that feels very different. I know that when I get there, I can relax my attention completely. My OT has set everything up so that life doesn’t feel like a sensory minefield. She even asks me how the drive felt. She doesn’t ask whether there was a lot of traffic, or whether I knew which exit to use. She asks how the drive felt. It’s a minor miracle, really.

The drive home is pretty good, too, because I’ve just spent an hour with someone who understands how much work it takes for me to do any of the following:

1. Drive
2. Plan a sequence of apparently simple tasks
3. Transition from one apparently simple task to another
4. Walk through a grocery store
5. Figure out how to put my shoes on without feeling dizzy
6. Keep up with a conversation between two people
7. Keep up with a conversation that involves more than two people
8. Be in a crowd in which people are talking loudly and/or all at once
9. Handle sudden or persistent noises
10. Keep track of visual stimuli, whether moving or stationary

She also understands that the following are not optional or a waste of time, but activities absolutely essential to my neurological health:

1. Walking or bicycling
2. Making lists
3. Singing and moving
4. Stretching
5. Doing my OT exercises
6. Touching soft fabrics
7. Watching spinning things
8. Writing
9. Resting under 30 pounds of weighted blankets
10. Doing physical labor (the more strenuous, the better)
11. Having a routine
12. Doing art work
13. Stimming
14. Having a good night’s sleep

The husband also understands all of these things. He’s amazing. Today, for example, he asked me whether I could take the car in for inspection, because he has a cold. He didn’t say, “You do it, honey. I’m sick.” He said, “I don’t want to do it, but I realize that if you do, it means dealing with the outside world.” He understands that I need a fair amount of lead time to prepare, and that I will need a great deal of recovery time when I get back.

I felt pretty goddamned awful about having to say no today, but it wasn’t because he was putting any pressure on me. It was because I had to say the words: “I have a disability, and I can’t do these things on the spur of the moment. We need to start thinking about getting some assistance from other people when you’re not feeling well.” It was so hard to say those words. I went outside, dug up some more grass (yes, we still have some, but not for long…) and felt really sad. On the positive side, however, saying those words helped lead me in precisely the opposite direction from a meltdown. Not bad for one lifetime.

I used to be able to do everything. Really. You must believe me. Everything. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work at a demanding job, teach my kid, support my family, pay the bills, cook, clean, plan birthday parties, include all the neighborhood kids in our Jewish holiday celebrations, plant a garden, exercise, and do just about anything anyone asked me to do, except stand on my head. But, as LizzieK8 said so beautifully in her comments to Monday’s post:

“We’ve spent so much of our life using up our energy to pass for normal, that we just don’t have the reserves for full-time passing anymore. We can do it when we have to (if given enough time to prepare), and we know better how to take care of ourselves when we’ve had to overextend our reserves, but we just don’t have it any more to do a full-time job, day in and day out.”

I burned a lot of energy in 50 years trying to be “normal.” I tried to do everything I thought the world demanded of me, and I did it with a very sensory-sensitive neurology, undiagnosed AS, SPD, dyspraxia, and who knows what else.

But those times are over. I’m sad that they’re over. And I’m also unbelievably relieved.

I’m finally learning that a human being is not an infinitely renewable resource. We have to take care of ourselves and use our energy wisely. For Aspies, just walking through the world and taking care of ourselves is a lot of work. For those of us who are feeling the effects of a lifetime of defying the way we were made, taking care of ourselves is the most vitally important work we can do.

© 2009 by Rachel Cohen-Rottenberg

Last week, I found a used children’s book called How It Works: Funny Bones and Other Body Parts, written by Anita Ganeri, and illustrated by Steve Fricker and John Holder. The book is written for third or fourth graders. I was attracted to it because there are basic systems in the human body that I have never been able to understand. I wasn’t interested in complex, high-level information. I was interested in things like the difference between a muscle and a tendon. So I bought the book.

It’s wonderful. Each section consists of detailed drawings that cover two pages. The book presents each body system by using analogies to familiar objects. For example, in the section that illustrates how different parts of the brain function, a compass symbolizes the ability to orient oneself in space, and a megaphone denotes the ability to understand speech.

I began reading the book the night I bought it, and I sailed through the sections on hair and skin, bone and muscles, the five senses, the brain, and the respiratory system. I was enjoying myself immensely until I got a few minutes into the part on the circulatory system. Very soon, I began to feel very, very dense.

I will try to describe why. On the picture of a heart are the following easy-to-read chunks of text:

Arteries are the blood vessels that take oxygen from the heart to the rest of the body.

Veins are the blood vessels that bring carbon dioxide to the heart from the rest of the body.

So far, so good. Arteries take blood away from the heart, and veins bring blood to the heart. Very nice. I can grasp that. But then, there is another chunk of text, and this is what it says:

Arteries take carbon dioxide from the heart to the lungs. Veins bring oxygen to the heart from the lungs.

At this point, my poor brain began to twist itself into knots and lots of grey matter started dissolving. In a nutshell, here is the problem:

1)  On the picture, the text says that arteries take oxygen away from the heart. But then, the other text says that arteries take carbon dioxide away from the heart. To the lungs. (How did the lungs get there, anyway?)

2)  On the picture, the text says that veins bring carbon dioxide to the heart. But then, the other text says that veins bring oxygen to the heart. From the lungs. Help!

Don’t forget, I am looking at a very well-rendered picture in a children’s book, and I just couldn’t get it. I couldn’t see the relationship between the words and the pictures at all. I finally put the book down and felt really, really stupid for the rest of the night.

A day or two later, I picked up the book again, determined to understand. So I looked at the pictures. And I looked at the words. And then it dawned on me to draw the pictures out myself.

So I did. I drew the heart with its two chambers, and then the lungs to either side. I drew the aorta, and I labeled what it was for. I drew the superior vena cava and inferior vena cava, and I labeled what they were for. I drew veins from each lung to the heart, and arteries from the heart to each lung. Finally, I drew arrows to chart the blood flow from the body to the heart, from the heart to the lungs, from the lungs back to the heart, and from the heart to the rest of the body. I cannot draw to save my life, but at least I drew a picture that made sense to me.

Finally, and I know you will be shocked to hear this, I made a list. There is always a list somewhere, waiting to be born, and I will always find it. My list (which is now tucked safely inside the book for easy reference) looks like this:

1) Veins carry carbon dioxide from the body to the right chamber of the heart.

2) Arteries carry carbon dioxide from the right chamber of the heart to the lungs, where the blood picks up oxygen.

3) Veins carry the oxgen from the lungs to the left chamber of the heart.

4) Arteries carry the oxygen from the heart to the rest of the body.

I can understand this system as a linear sequence of events. I can conceptualize the difference between what arteries do and what veins do. But I cannot visualize it in my mind at all. I have the words, and I have the pictures in the book. The pictures help me grasp the meanings of the words. But I cannot hold the pictures in my mind.

Now, if I were in an operating room with a surgeon who was doing open heart surgery, and he or she explained all the different parts while showing me each one, and I could see the blood flowing and the valves of the heart opening and closing, I would hold that picture in my head for the rest of my life. I’m certain of it. I can visually remember things I see and touch. But I cannot visualize things I read, and I cannot hold a picture I see in a book in my head for very long.

So how did I get all those As in grammar school?

We had picture books to read, but tests and homework consisted solely of words. All I had to do was rote memorization, something that many Aspies are very good at. In those days, I had a nearly photographic memory. I could look at a word once and know how to spell it. All my life, I have seen spoken words and my own thoughts as word pictures in my mind. I literally see all the words spelled out across my mental screen.

So I could regurgitate information on a test without understanding it at all. I had lots of facts and lots of details, but no big picture—another Aspie trait. I could not have told you how the body parts fit together. I saw them as discrete objects. Had I gone to a school in which we were expected to synthesize information, I would have had a much more difficult time of it.

In any case, in these days of educational software with lots of blinking lights and moving images that endlessly distract and ultimately overload my senses, I’m glad to know that picture books have not gone the way of the wind. Where would I be without them?

© 2009 by Rachel Cohen-Rottenberg

In The Complete Guide to Asperger’s Syndrome, Tony Attwood defines executive function as a term that includes the following skills:

• Organizational and planning abilities
• Working memory
• Inhibition and impulse control
• Self-reflection and self-monitoring
• Time management and prioritizing
• Understanding complex or abstract concepts
• Using new strategies

Attwood goes on to say that most people with Asperger’s Syndrome have some level of executive-function impairment (Attwood, 234).

At one time or another, I have found most executive-function skills to be a challenge. At present, my difficulties tend to be in the areas of working memory, organization and planning, and time management. 

Making lists has always been my strategy for coping with these executive-function deficits. Over the course of my life, my lists and I have had a rocky relationship. Sometimes, I labor over them lovingly. At other times, I declare my independence of them entirely. Ultimately, I always come home to them with an odd mixture of desperation and limitless hope. It’s only now, at the half-century mark of my life, that my lists and I have settled down to a mutually agreeable existence.

Working memory

My fears about my poor working memory have always been with me, but as a child, I could not consciously express them. Instead, I made lists that reflected just how frightened I felt about forgetting people, places, and things.

The first lists I can remember contained identifying information about photographs I took in 1970 and 1971, when I was twelve and thirteen years old. I still have these photographs. Every single one has the following information on the back:

• The full name of each person in the photo
• The address, city, state, and zip code of each person in the photo
• The age of each person in the photo
• The date the photo was taken
• The location in which the photo was taken

I can vividly remember my state of mind when I was documenting this information. I felt as though I were doing a rote homework assignment in a thorough and conscientious way. I concentrated on my handwriting so that it was consistent across photos. All the information being there, every time, no matter how redundant (and it was quite redundant) was absolutely crucial. These lists calmed me and helped me to feel safe.

The people in the photos are generally my parents, my brother, and myself—not people whose names, addresses, and ages I’d be likely to forget. I now see this odd ritual as an expression of my fears about my working memory—that is, about my tendency to forget my thoughts very quickly. That I was afraid of forgetting the names and addresses of my parents and brother when I was still a child indicates just how deep my fears went.

Organization and planning

Up until recently, I believed that my organizational abilities were quite advanced. And, in some ways, they are. For example, if I am faced with a chaotic array of objects (like an overstuffed attic or a floor covered with toys), I can easily see the categories into which the objects fit, and I have no problem putting them in order.

For several years, I worked a full-time job as a technical writer out of my home office, and along with my former husband, I homeschooled my daughter. In those years, my life was a triumph of strategic planning. I had a schedule that showed what time to begin and end work, when to get exercise, when to homeschool, when to take my daughter to her flute lesson, what books we’d taken out of the library, and when we needed to bring them back. I had lists of the writing projects I was working on, along with milestones, deadlines, and meeting times. I had sublists showing the tasks I still needed to complete for each project. Along the way, I was making more lists. I was planning curricula (with accompanying book lists) and documenting each day’s homeschooling activities (in a list with subheadings) for the school district.

I’m sure you will be thrilled to learn that I consistently got everything done on time. My lists were flawless. The superintendent of schools was amazed. My co-workers thought I was super-human. So did I. Of course, I was irritable, overwhelmed, anxious, and exhausted most of the time, but since everything was moving along so well, what did it matter?

In the light of my Asperger’s diagnosis, I can now see that I was able to organize and plan the daylights out of myself, but I had no sense of what was appropriate to plan for. I never took into consideration my feelings, my energy level, my stress, or my health. My present husband recently pointed out that I was like the Road-Runner, speeding along, right off a cliff. Remember Road-Runner? Everything was fine, so long as he never looked down. The minute he did, he plummeted to earth.

Something like that has happened to me in the past six years. I got divorced and remarried, and along the way, I quit my job and decided to devote myself simply to being a homeschooling mom. Once my daughter began going to school, I saw how helpless I felt without a work schedule or a homeschooling list. As I’ve let go of the things I used to do so efficiently, I’ve begun to see just how much all that efficiency was masking significant deficits.

Time management

My most serious executive-function deficit is my inability to manage time. For me, this problem is related to having a poor working memory. I often forget to do the simplest tasks. I now have a series of lists that help me get through the day so that I take proper care of myself and meet my responsibilities to my family.

I began making these lists when I was a child. When I was in the seventh grade, I wrote down what to do in the morning before school. The list was handwritten and quite specific, with the proper time for doing each activity, such as brushing my teeth and putting my books in my bag.

I was very embarrassed about having this list, and I never showed it to anyone. I felt like a silly child who had to be told the simplest things. Over the years, I’ve continued to make lists, all the while feeling ashamed that I had to write down the tasks that other people had learned to do effortlessly decades before.

Since my diagnosis, I have learned that because I have a sensory processing difficulty, I need reminders of what to do, and in what order to do them. Learning the proper sequence of tasks has been a challenge.

My lists no longer have the hour and minute at which I must do something. That level of specificity made me feel like a prisoner; ultimately, I would rebel and throw the list away entirely. The logic of my current lists came mostly by trial and error (which is why the lists are in pencil). But now I have lists in which I have a great deal of confidence.

Here is my morning list:

AM

• Stretching and situps
• Put on sweater and hat
• Floss and brush teeth
• Comb hair
• Use deodorant
• Use hand cream
• Get dressed for working out
• Set out warm pajamas for tonight
• Make bed
• Give cat food and water
• Rinse tofu
• Have fiber powder in juice, water, vitamins, etc.
• Have breakfast (cereal, fruit, soymilk) and do dishes
• Walk or bike
• Dress for the day
• Put out workout clothes for tomorrow
• Turn on cellphone

The morning list was easier to put together than the evening list. It may be my difficulty with transitions. The morning transition is the easiest one: I’m just waking up. As the day goes on, the activities I want to do start to compete with the tasks I need to do. Once I get started on something, my hyper-focus can take over and make the transition to a new task very difficult. I’ve now succeeded, however, in putting together a workable evening list.

The great thing for me about having these lists is that if I get off-track because something else has grabbed my attention, I have a way of getting back to the basic things that need doing. Having a visual reminder of what to do is enormously comforting. All that anxiety about forgetting what to do has diminished. For the first time, my life has a rhythm that comes from within and a pace that makes sense.

© 2009 by Rachel Cohen-Rottenberg