Journeys with Autism

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

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

Note: For information about my first OT visit, see my previous post.

For my second appointment, I showed up slightly less of a wreck than I did at the first, but still in need of some grounding. This time, the OT used the Thumper, a big vibrating machine that she ran back and forth over my back. The vibration was so strong that I could feel it inside my ears. It was another piece of heaven.

Once I got more grounded, we talked about how the past week’s activities had gone and discussed new activities to try in the coming week.

Therapeutic Brushing
After hearing about my negative experience with the brushing, the OT agreed that I should discontinue it. Instead of the brushing, we tried using soft bean bags and tapping them on my arms and legs. It felt okay at the office, but when I tried it at home, it felt distinctly like hitting myself, which is a trigger. She had also mentioned that I might try using a soft fabric that I find comforting. I have tried using the velvet fabrics I have, and they feel okay on my arms, but I still resist the whole activity. Trauma stuff, I think. Anyway, I do what I can.

Drawing an Infinity Sign
When I told my OT how frustrated I felt drawing the infinity sign, she suggested that I just imagine a large one on the wall and track it with my eyes. I’ve been doing that every day, and it feels really great. I can actually move my eyes without moving my head! After 50 years of doing it the other way, that really amazes me. I even find myself playing around with the exercise at work. I’ll look at something, and then shift my eyes to another object without moving my head. Everyone is so busy looking at all the objects in the store that no one notices the strange woman in the linen department doing eye exercises.

Learning the Cross-Crawl
At this visit, my OT taught me something called a “cross crawl,” in which I lift my right hand and then use it to touch my upraised left knee, and then use my left hand to touch my upraised right knee. The point is to cross the center line in my body in order to get comfortable with the parts of my body working independently. I find this particular exercise very easy, as it reminds me of various karate exercises that also work with crossing the body’s center line.

Singing
After hearing that the vibrations from the Thumper felt like they were inside my ears, the OT told me to sing every day. She said the vibrations would help to activate and soothe my vestibular system, which controls balance and movement, and is based in the inner ear. I always sing when I work out anyway, so this has been an easy one to practice each day. I also want to relearn Torah cantillation. In fact, the book and a small keyboard have been sitting in my loft, beckoning me for months. I’m hoping to add cantillation to my OT routine at some point.

Proprioceptive Activities and Late-Night Snacking
As I mentioned in an earlier post, the propriocetive system provides information about the relative positions of the parts of the body. Engaging the proprioceptive system includes how we feel the joints in our body and the kind of pressure we put on them. The right amount of pressure is very soothing. 

I find that I do a number of activities to engage the proprioceptive system, such as using a weighted blanket and weighted vests, bicycling, taking walks, doing my artwork, and fidgeting with whatever object is handy. I wondered whether my tendency to eat a lot before bedtime is also related to my need for proprioceptive activities. My OT said that chewing on things engages the joints in the jaw in a powerful way, which is why I like chewy, crunchy things at bedtime. I’m using them to calm myself down.

I don’t particularly like using food for this purpose on a regular basis, and she suggested that I try a different proprioceptive activity when I feel food cravings without being hungry. It’s going to take a while to work out of the habit of using food to calm myself at night, but the amount I eat seems to be diminishing as I do other activities. Last night, for instance, I spent some time doing my artwork and ended up eating a lot less than usual before bedtime.

When all is said and done, I’m enjoying the process of occupational therapy. Because of my executive dysfunction, I’m still having difficulty consistently working the exercises into my daily routine. But I’ll get there.

2009 by Rachel Cohen-Rottenberg

Since my sensory assessment, I’ve had two visits with my Occupational Therapist, and they have been unlike any visits I’ve ever had with a health professional. No matter what state I’m in when I arrive, I know that she will offer me ways to ground and to feel held.

For my first appointment, I ended up on her doorstep feeling really crummy. I was having a flare-up of a very painful condition that no one has been able to explain. Perhaps once or twice a year, I get a terrible pain in my bladder, like I have a urinary tract infection, except that when I use the bathroom, the pain radiates from my bladder, right up through the center of my body, down my arms, all the way to my hands and the tips of my fingers. I yell and cry until it passes. I’ve been checked many times for UTIs, and it’s not a UTI. No one seems to know what it is. (If anyone reading this knows what it is, please tell me!)

I told my OT what was happening, and she said, “What would you like to try? The big heavy blanket? The Thumper?” I went for the big heavy blanket and immediately felt comforted. As I was lying on the floor, enjoying my little piece of heaven, the OT asked me a number of questions about my sensory diet. For some reason, I was able to rattle off a list, even though I hadn’t made one on paper yet. Here’s my sensory diet, so far:

Rachel’s Sensory Diet

• Using a 15-lb weighted blanket when I get home from work and when I go to sleep at night.

• Using a 4-lb or an 8-lb weighted vest when I need to ground.

• Holding onto a velvet skirt and scarf, touching them with my hands and rubbing them on my face.

• Bicycling on a stationary stand.

• Playing with a gyroscope on a wire track, watching it spin around and around.

• Playing with a magic wand that has spinning lights.

• Watching my spoon mobile spin around and around.

• Working on art projects–bending wire, putting things together and taking them apart, and watching them spin and sparkle in the light.

When I started feeling better, I got out from under the blanket and we worked on some exercises for me to do at home. These included therapeutic brushing, drawing an infinity sign, and lying on the floor watching a spinning mobile.

Therapeutic Brushing
My OT told me to try therapeutic brushing, twice a day, on my arms and legs. The purpose of the brushing was to “wake up” the nerves in my extremities, with the aim of helping to reduce my tactile defensiveness. She warned me that if I have any trauma issues, the therapeutic brushing might start unlocking memories in my body and generally erode my defenses. The brushing can also be very over-stimulating, even though it is supposed to be calming.

At first, the brushing at home seemed to go well, but very quickly, I began to resist it. I felt myself getting more and more anxious and over-stimulated as the week went on, and I began to feel somewhat raw and undefended. I came to the conclusion that after many years of trauma recovery work, I’ve stripped off as many defensive layers as I need to. The remaining ones are necessary and I’m not willing to mess with them. So, I stopped the brushing midway through the week.

Drawing an Infinity Sign
We worked on having me draw an infinity sign, tracking the pen with my eyes without moving my head. I found this exercise a bit frustrating. The purpose was to help me train my eyes to work independently of the rest of my body, with the aim of diminishing the dizziness from my gravitational insecurity.

I noticed that I when I used my left hand (my dominant hand) to draw, I tended to stare at the dot at the center of the sign and track the rest with my peripheral vision. When I consciously tried to track, my eyes seemed to go faster than my hand. When I switched to my right hand, however, I was able to synchronize my eyes with my hand, perhaps because I had to concentrate harder when I used my non-dominant hand. It’s also possible that my left brain is my visual center. I am the left-handed daughter of a left-handed mother, and that can mean that the typical functions of each hemisphere are switched. In any case, drawing with my right hand seemed to click.

Watching a Spinning Mobile
I was supposed to lie on the floor in my loft, watching my mobile spin and tracking the circle without moving my head. I tried it. Once. I immediately got nauseous and dizzy. I didn’t try it again from the floor. I can watch it spin nicely at eye level, so I’m sticking with that.

© 2009 by Rachel Cohen-Rottenberg

On Monday afternoon, I got my weighted blanket and weighted vest in the mail. They came at the perfect time. My husband was visiting his father for a couple of days, and I was missing him. I needed some hugs, so I was looking forward to seeing how comforting the blanket and vest would be.

The blanket is from The Original Bean Blanket Company and weighs fifteen pounds. It’s twin-sized and consists of a very soft blue fleece material with beans sewn evenly throughout. Here’s a picture from the company website at www.thehugshack.com:

The vest came from the OTVest company. It’s a dungaree vest with the weights attached to the inside of the shoulder area by velcro strips. It weighs four pounds. Here are some photos from the company website at www.otvest.com/index.html:

Most weighted vests have both shoulder weights and weights in the body of the vest. I ordered one of those as well and should be getting it soon. I’m interested in seeing the difference in the effects of the design.

Since the blanket and vest arrived, some of my daily patterns have started changing. For instance, when I get home from work, my senses usually feel pretty overloaded, but I rarely know what to do with myself. I have certain protocols: I empty my backpack, put away anything I bought, gather up the receipts, and put my cell phone on the end table. But I’m still quite unfocused and at a loss as to how to proceed. I generally end up on the computer or eating something, even though I don’t really want to read about world news and I’m not hungry at all.

When I got home from working at the store on Monday, I completely bypassed the computer and the food and got right under my new blanket. I immediately noticed how reassuring it was to have the weight on me. Then, very quickly, I began to register how over-stimulated my nervous system felt. I kept having the feeling of energy pulsating through me, like a recurrent wave. I could feel how hard my nervous system had been working and what a pitch of activity it’s at most of the time.

After awhile, though, I could feel myself starting to relax. I’ve tried all kinds of meditation and other methods for relaxing, but I was experiencing a much deeper kind of relaxation. It wasn’t just my mind relaxing or my muscles unclenching. It was my nervous system calming itself down.

I can’t remember how long I stayed under the blanket. It might have been a half hour. When I finally got up, I had a very odd feeling of being very refreshed and extremely tired. I felt calm and ready to focus on putting some dinner together, but I also felt how deeply tired I was. It showed me how hard I work every day just to deal with sensory phenomena and the world of other people. I used to think that only my mind was working hard, but now I realize that it’s basically all of me.

I went to sleep that night under the blanket and my quilt, and miracle of miracles, got a good night’s sleep. I seem to remember waking up in the middle of the night, but the next thing I knew, it was Tuesday morning. The only down side was that I woke up with a migraine that required two tablets of Imitrex to knock out. I had a similar experience the next night: a great night’s sleep, followed by a migraine. It’s possible that the migraines resulted from the decrease in stress. I’ve found that when I’m stressed out, I don’t get migraines. When I’m debriefing from the stress, they arrive. Sometimes, they arrive out of the blue, but this time, it seemed like a reaction to bringing down the stress level.

Today, I worked for a couple of hours at the local food co-op and then had to see my doctor about getting an insurance referral to the OT. By the time I got home, it was snowing, but I was feeling pretty good. I had a snack and worked out, and then decided to try out the blanket again. I was relaxing pretty nicely when my husband got home. We chatted about his trip and his dad, and then he began unpacking. I continued relaxing under the blanket. Then I woke up at 7:30 pm—two hours later.

I was amazed. I rarely fall asleep in the middle of the day or in the early evening. If I do, it’s because I’m so sleep deprived and overloaded that I feel as heavy as a rock. But today, I felt great when I got home and I wasn’t sleep deprived at all. The simple truth was that my nervous system was exhausted, as it is every day. After sleeping under the blanket for two hours, I woke up groggier than I’ve felt since I was a chronically insomniatic kid. My husband wanted to go out for dinner or a movie, but I couldn’t imagine having the energy to put my boots on, much less go out in the snow. So we had dinner together at home as I slowly returned to consciousness.

As for the OTVest, I’m wearing it as I write this post, and I love it. It puts very gentle pressure on my shoulders and feels very soothing. I’m not sure what I’ll do when the warm weather comes. The vest and weights will be too heavy. Fortunately, the weights detach as a unit, so I can put them on my shoulders without the vest. I’ll probably do that at home as the weather improves.

Great stuff, eh? Too bad I had to wait 50 years to experience it, but hey, it’s better late than never!

© 2009 by Rachel Cohen-Rottenberg