Archive for March 29, 2009

My Second OT Visit

March 29, 2009 Rachel Making Art, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Brushing, Vestibular System, Weighted Blankets, Weighted Vests

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

10 comments

My First OT visit

March 29, 2009 Rachel Gravitational Insecurity, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Brushing, Weighted Blankets, Weighted Vests

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:

1. Using a 15-lb weighted blanket when I get home from work and when I go to sleep at night.
2. Using a 4-lb or an 8-lb weighted vest when I need to ground.
3. Holding onto a velvet skirt and scarf, touching them with my hands and rubbing them on my face.
4. Bicycling on a stationary stand.
5. Playing with a gyroscope on a wire track, watching it spin around and around.
6. Playing with a magic wand that has spinning lights.
7. Watching my spoon mobile spin around and around.
8. 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

2 comments

Do You Remember Your Childhood Meltdowns?

March 25, 2009 Rachel Childhood, Girls and AS, Meltdowns

[Note: This post talks about the physical and emotional abuse I experienced as a child. The descriptions aren't graphic, but if you're not feeling up to reading about the subject, you might want to skip this post.]

Lately, I’ve been reading a number of blogs written by moms of Aspie kids. At some point, each mom describes her child’s meltdowns, and asks for guidance and support. The girls’ meltdowns sound every bit as spectacular as the boys’ meltdowns—a fact that interests me a great deal, because I don’t remember having any meltdowns as a child.

Except maybe one. Or, at least, the beginning of one.

I was four years old and the flower girl at my uncle’s wedding. I was all dressed up and sitting in an empty room with pine wood floors. In front of me was a photographer who was getting ready to take my picture. To my right were a number of relatives, including some aunts and uncles, who started making baby talk and saying “Smile!” as the photographer picked up his camera. I decided, right then and there, that I would not have my picture taken. So, when the photographer pointed his camera at me, I started screaming. I really didn’t know why I was screaming, and I still don’t know why. It just felt like the right thing to do. When the photographer put the camera down, I stopped screaming. Then, when one of the relatives in the wings told him to try again, he’d pick up his camera, and I’d resume screaming where I’d left off. After several attempts, lots more annoying baby talk from my relatives, and lots more screaming from me, the photographer finally gave up.

Fast forward to the wedding reception. There I was, between my mother and my father, and the photographer thought he’d pull a fast one on me and take my picture. I caught him at it, though, and I started yelling my head off. The next thing I knew, my father yanked me by the arm down to the basement, where he started dragging me with one hand while he hit me, over and over, with the other. Everything became a total blur. At one point, an elderly man tried to stop the abuse, but he failed. I have a vivid memory of my ankles burning against the floor. I must have been completely overwhelmed, because I don’t remember how it all ended. I just remember coming back upstairs and feeling very ashamed and very ghostly.

There were many other incidents of this kind of behavior from my father. Often, my mother would set it up by concocting some reason that I’d pissed her off that afternoon. She’d then torture me for hours by telling me what my father would do when he got home. I was so afraid of the pain that I once tried to bribe her by spilling out the contents of my piggy bank on her bed—an attempt at self-protection that only infuriated her. By the time my father got home, I was actually relieved that the suspense was over.

So, here’s the question I’ve been turning around in my mind: Is it possible to hold back a childhood meltdown out of fear? It certainly seems so. When I was about ten years old, I remember walking upstairs in our house and realizing that I wanted to start screaming. I held it all inside me, though, because I didn’t want to get hurt. I remember thinking about it quite clearly.

Apart from the screaming episode at the wedding, I didn’t melt down again until I was out of my parents’ house, 3000 miles away, and in my first serious (and tumultuous) relationship. Then, I made up for lost time and had a series of absolutely stellar meltdowns. The best I can say for them is that they resulted in getting me into therapy, which was a blessing straight from heaven. Therapy didn’t just save my life. It enabled me to create a life worth saving.

But what happened during all those years of sensory overload, with my mother’s screaming and crying, and my father’s hitting and shouting? For one thing, I dissociated from my feelings almost entirely. Except for sadness and fear, I don’t remember having any feelings. Dissociation is very common with trauma, so that doesn’t surprise me.

But I did more than dissociate. I imploded. The meltdowns, which should have been on the outside, took place on the inside. I held everything in—all my fear, all my sensory overload, all my confusion, all my frustration, all my loneliness, and all my anger. But it didn’t stay inside and dissipate. It just wore me down and exhausted me with no possibility of catharsis. By my sophomore year of college, I was unable to read a single page of a book and remember what it said. When I tried to write my papers, the script was jagged because my hand was shaking.

That’s when I fled to the west coast. My first adult meltdown about four years later was an unbelievable relief. I felt as though I’d waited for it all my life. Which I had.

Whenever I read about parents of Aspies being concerned about handling their children’s meltdowns in the best possible way, I feel an incredible rush of love and appreciation for those parents. I’m not sure they know how well they’re doing. They seem to wonder whether they are being good parents. I wish I could get them all together and shout, “You are spectacular parents!”

And now, a question for other Aspie trauma survivors: Do any of you remember only a very few childhood meltdowns, or none at all? I’m wondering how common this scenario is.

If you’ve read this far, thanks for coming along with me.

© 2009 by Rachel Cohen-Rottenberg

17 comments

The Fine Art of Perseveration

March 22, 2009 Rachel Making Art, Marriage, Perseveration, Visual/Spatial Skills

The word perseveration has been coming into my mind with great frequency these days. It’s a cool word, you know? The verb form, perseverate, sounds like some weird techno-version of persevere, except that the -ate tacked onto the end makes it sound like something you do with a Cuisinart.

Anyway, I became curious as to what the authorities think perseveration means, so I went to the Merriam-Webster Online Dictionary and looked it up. Check out the definition and etymology:

Main Entry: per·sev·er·a·tion
Pronunciation: \pər-ˌse-və-ˈrā-shən\
Function: noun
Etymology: Latin perseveration-, perseveratio, from perseverare
Date: 1910
Definition: continuation of something (as repetition of a word) usually to an exceptional degree or beyond a desired point
— per·sev·er·ate \-ˈse-və-ˌrāt\ intransitive verb
— per·sev·er·a·tive \-ˌrā-tiv\ adjective

I have read that people on the spectrum perseverate about things large and small, and I’m no exception. I’ve had therapists, boyfriends, schoolmates, and family all tell me that I think about things for far too long and that I need to give things a rest. Of course, it’s never seemed like too long to me. Having all those thoughts constantly spinning in my brain, like a hamster on a wheel, has always felt perfectly normal to me. But then again, in the words of a Paul Simon song, “When something’s wrong, I’m always the first to admit it, and always the last to know.”

Not that anything is wrong with perseverating, unless you’re driving the other people in your house nuts with it. That’s where continuing a process “beyond a desired point” gets people tense. Lately, I’ve been watching myself perseverate, and for me, it’s been great fun. My husband doesn’t much mind either, except when I say, “I’ll be right there to watch the movie,” and an hour later, I’m still working on whatever-it-is that really, truly, I-mean-it was only supposed to take a few more minutes to finish.

My main warning sign that I’m about to go on a roll comes very early in the game. It usually starts with a “nudge-nudge, wink-wink” of denial, as in, “I’ve got this great idea for a new mobile, and I’m just going to wind the beads around one spoon before coming downstairs and finishing breakfast.” Yeah, right. Several hours later, I’m still working on the mobile and haven’t had anything to eat or drink at all.

Now, I know better than to start when I have a commitment outside my house in the early afternoon. I’ve set up my schedule to start my volunteer work at 1 pm, which means that I need to eat, drink water, work out, drink more water, shower, dress, and generally take care of myself before going out into the world. If it’s a week that my daughter is with me, I can stave off the perseveration even without an outside commitment, because her schedule gives me a schedule, and thus a break from my own extremely focused process.

But if my daughter is at her father’s house, my husband is visiting his dad, and I’m not working outside my house, I’ve got the green light to go. I get so absolutely lost in whatever I’m doing that I couldn’t tell you whether five minutes have passed or five hours.

Lately, when I have time to myself, I’ve been perseverating with my art. I love trying things out, and seeing how they look, and taking things apart when they don’t work, and trying something new, and seeing how to do a task that’s been stumping me. I love the feeling of the beads in my hands. I love wrapping the wires to get them to coil just right. I even love the nicks and the callouses I’m getting on my fingers. I love the whole blessed thing.

When I’m alone and can let the art take me where it wants me to go, I find that perseverating doesn’t happen “beyond a desired point,” because there is no desired point. At those times, it’s the “continuation of something…to an exceptional degree.” It’s better than persevering. It’s persevering by letting go and letting the process take me where it will. It’s persevering with inspiration.

However, nothing exists in isolation from its opposite. So while perseverating on my art feels wonderful, having to stop for any reason is very, very difficult. Sometimes, it feels painful. Perseverating is physical, like a powerful force that doesn’t want to stop. Something has to interpose itself between me and the object of my perseveration. Sometimes, an external commitment, like a doctor’s appointment, will do it. At other times, it’s my internal moral compass telling me that I can’t keep my family waiting endlessly for dinner or for a movie.

There are forces equal to perseveration, and being an adult, I can choose to stop and shift my attention. I love spending time with my husband and daughter. I know that nothing lasts forever, that my daughter will soon be grown, that my husband and I are getting older, and that I’d better pay attention now, because one day, everything will be changed. Growing older provides perspective, and I am glad of that.

It’s the transition from one activity to another that is difficult for me. I even have difficulty saying good-bye to the day and going to sleep, no matter how tired I am. It’s my Aspie wiring. I can talk my way around it and adjust my life around it, but I can’t ever change it.

And why would I want to? As difficult as it is, it makes me who I am. And I’m enjoying who I am, more and more, with every passing day.

© 2009 by Rachel Cohen-Rottenberg

8 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

Aspies, Doctors, and Advocating for Ourselves

March 20, 2009 Rachel Communication, Doctors, Meltdowns

I had a very frustrating experience at the doctor’s office on Wednesday. It taught me a lot about my Asperger’s challenges, my limits, and the necessity of getting the right support.

But first, I need to vent.

Since moving up to Vermont, I’ve been seeing a new doctor. I went to her office on Wednesday because I had requested a referral to my OT, and the doctor wanted to check in each month about my OT visits. We also needed to do some “housekeeping” tasks, like figuring out when I had my last physical.

When I saw her last month, my chart did not have any information in it from my last doctor. I’d requested that the records be transferred about five months before, and it was surprising that they weren’t there. I later got a very apologetic message from the office manager, saying that the records had arrived long ago, but had not been placed into the folder with my new patient information.

Unfortunately, that mistake was a harbinger of things to come.

On Wednesday, I had a 3:00 PM appointment. I showed up about 10 minutes early to check in and give the receptionist my co-pay. I then sat in the waiting room, which was slowly filling with people, until 3:20, 3:30, 3:40…You see where this is going. At some point, a woman with two small children came in. The older boy was coughing constantly, and the younger one (who undoubtedly was carrying his older brother’s germs) was crawling around putting everything in his mouth that wasn’t tacked down, and touching every object he could find, including the walker of an elderly woman who was there to see the doctor. The mother of the two boys sat with a magazine held up to her face (literally) and paid very little attention to the children.

By about 3:45, I was long since overwhelmed and had begun to realize it. So, I went up to the receptionist and asked whether there was a quiet place in which I could wait. Luckily, a room had just opened up, so the nurse brought me in there and took my blood pressure, my pulse, and my temperature. When she was done, she said that the doctor would be there “in a few minutes.” I began to enjoy the solitude until I realized that it would be more than a few minutes, at which I point, I started to silently cry with frustration and anger. At 4:10, the doctor walked in, and without offering an apology or an explanation for the long wait, said: “So, you’re here for an osteopathy appointment?”

I just about spit. It was everything I could do to keep from rolling my eyes and snarling. Instead, I used my best humorless monotone voice to say, “No, I’m here because I’m seeing an OT and you said I needed to come in once a month.”

“Oh,” she said. “That’s right.” (Did I mention that she had the seven-page OT evaluation I’d brought in a month before?)

Then, we spent about ten minutes talking about health insurance, during which time she told me that I needed to call the insurance company and find out whether the referral had been approved. She suggested that I carve out about 45 minutes and put my phone on speaker while I got the run-around. Again, in my most humorless voice, I said, “No, I absolutely cannot do that.” She finally said she’d get someone from the office to call the insurance company.

Terrific. So, about scheduling that physical, I said. I couldn’t remember exactly when I’d had my physical last year, so I asked her to look it up on my chart. She said, “Well, I see you had a physical in 2007.”

“Okay,” I said slowly, “in what month did I have my physical in 2008?”

She said she’d have to figure that out. So then, and I am not kidding you, she began to remove the pages from my chart and spread them out onto the examination table. She still couldn’t find the pages from 2008, so she said, “I’ve got to go and get someone on the case about this.” She left the room. I know, I should have grabbed onto her ankles and kept her from leaving, but I figured she would be back in a minute or two. Why I made that assumption, given how swimmingly everything was going, I don’t know. Anyway, the minutes ticked by. First, I started crying again, and then I walked out into the corridor, just to make sure everyone hadn’t gone home. I couldn’t decide whether to just walk out of the office altogether. I probably should have.

Finally, after ten minutes, she came back and told me that I’d had my last physical in June of 2008. Halle-freakin’-luyah.

Then, she gave me some new prescriptions for my medications. Did she ask me anything about my visit to the OT? Anything at all? Nope. And that was the reason for the whole visit. I could have gotten my prescriptions called in and found out the date of my last physical over the phone.

I drove home crying in utter frustration.

So what have I learned about my Asperger’s from this little disaster?

1. As the saga in the doctor’s office wore on, I could see a meltdown on the horizon, and I steered myself away from it. Nothing would have been gained by it, and I wasn’t about to lose my dignity in front of everyone. However, steering clear of the meltdown was so exhausting that it left me without a clear sense of how to express my frustration and my needs in a constructive way. Instead, it took a huge effort just to ask the simplest questions, and by the time we were done, I could hardly put a sentence together.

2. I don’t do well when my expectations are thwarted. I generally expect some wait at a doctor’s office, but I had not imagined a 70-minute wait for what should have been a 15-minute appointment. That was more out-of-whackedness than I was prepared for.

3. I don’t do well when people are very late after I’ve done everything I can to show up on time. I’ve gotten more flexible about some lateness, but over an hour is really over the top.

4. I don’t do well when people don’t apologize. A simple, “So sorry about the long wait, but we’ve had a series of mishaps today” would have sufficed. But then again, I’m an Aspie and don’t understand social graces. I guess I’ll have to work a little harder on that.

5. I can’t sit in a crowded waiting room for very long.

After telling the story to my husband, he said, “Look, you’re dealing with a disability here, and they need to make accommodations for you. Otherwise, you can’t go to that doctor’s office again. If you had a mobility problem, they’d make allowances, so what’s the difference?” (A smart man, my husband.)

So we’re going to write a letter to the doctor’s office, making it clear that my AS and SPD make certain things very difficult. We want to be able to call before coming in, so that if they’re running late, we can wait at home, rather than in a crowded waiting room. If they can’t accommodate us, we’ll find someone who can.

I realize that what I need most in these situations is an advocate, rather in the same way that an Aspie kid in school needs an aide. So my husband will go with me to future appointments. He won’t be overwhelmed, and he’ll have enough clarity of thought to express what I can’t express while I’m just trying to process what’s going on.

My next appointment isn’t until June, so we have some time to continue thinking it over. I’m not going to accept that what happened is so common that I should let it go. I know it happens a lot, but that doesn’t mean I shouldn’t protest it and advocate for what I need. Nothing will change otherwise. Nothing ever changes without people making themselves heard.

© 2009 by Rachel Cohen-Rottenberg

7 comments

Creating More Art from Found Objects

March 19, 2009 Rachel Making Art, Visual/Spatial Skills

Since I last posted about making art from found objects, I’ve completed the crown I was working on, and I made another mobile.

For the crown, I added some color and texture to the four wires on top. I used a couple of bracelets and a beaded necklace, winding them around each portion of the wires. Here’s how the crown looks hanging in the window:

 

 

 

 

 









Yesterday, I made a new mobile from some pieces I’d picked up at the thrift store. We have a “World-Famous 25-Cent Shelf,” on which you can find all manner of miscellaneous items for a quarter apiece. Here’s how the mobile looks:

The circular metal at the top and the spiral in the center came from the 25-cent shelf. I put some blue beads onto the spiral, wrapped some wires around a thin tube to make them squiggly, and then hung three wind chimes from them. Through the center of the spiral, I suspended a Zuni ring I had bought in New Mexico in 1987. In the circle at the top, I hung a piece of white quartz I’d found at the store.

Today at work, I picked up some more items from the 25-cent shelf, mostly odd and interesting pieces of metal that I can use for the frames of my art work. Then, to my heart’s delight, I found out about a box of metal items in the sorting room.


All the metal was going out for salvage, and I could take anything I wanted, for free. I ended up with several white wire hangers (that I can take apart and mold for wiring), a whisk, some small spoons, and a bottle opener. They will all get turned into art, eventually.

I’m really looking forward to tag sale season. Around here, after tag sales, people leave all the stuff that didn’t get sold in boxes by the sidewalk. There will be more free stuff to salvage and use. My basic rule for the items that make up my art work is that they be used (rather than new), and that they be free, or cost a dollar or less. It’s extraordinary what you can find.

© 2009 by Rachel Cohen-Rottenberg

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Reflections on Being an Aspie Parent

March 16, 2009 Rachel Childhood, Communication, Marriage, Meltdowns, Parenting, Women and AS

000_0298I sometimes hear my fellow Aspies say that they are afraid to have children. Some fear being cold, remote, and unfeeling parents. Others are comfortable with the idea of raising a child with an ASD, but feel apprehensive about parenting a neuro-typical child.

Certainly, there are challenges related to having Asperger’s and raising children. I won’t deny it. But we Aspies bring incredible strengths to the process as well. No Aspie should disqualify himself or herself from parenthood simply on the basis of an Asperger’s diagnosis. My daughter Ashlynne is neuro-typical, and I wouldn’t trade being her mom for anything in this world. The past 16 years have been the best years of my life.

Our Aspie Challenges

1. Confronting family history

To me, dealing with one’s childhood issues is a must for any parent. Having a troubled childhood is tough on anyone, and it can have an even greater impact on an Aspie. Having an Aspie parent who is difficult can also put an Aspie child off the idea of parenthood altogether.

My father was an undiagnosed Aspie. He could be very fun or very distant, very supportive or very condeming, very loving or very frightening, depending on the day and time. I identified strongly with my father’s sensory defensiveness and confusion about how to interact with other people, but I swore that I would do everything differently when I became a parent. It was many years before I realized that my father’s Aspieness was separate from the things he had done. We were both Aspies, but we had choices about how we treated our children. He made his choices. I made very different ones.

While no one ever works out every life issue completely, I’m glad that I recognized and began working with mine before becoming a parent.

2. Meltdowns

Most Aspies have them. They’re not fun for anyone. How to handle them when you’re parenting is a big challenge.

I didn’t know I was an Aspie when Ashlynne was small, so I felt very, very guilty about my meltdowns. I thought that they were reflective of some terrible character flaw and that I needed to work harder in therapy. Now that I’m diagnosed, I feel much less likely to have a meltdown. I know what causes one, I can read the warning signs, and I know how to speak my feelings before they consume me.

Looking back, I can see that I mitigated the effects of the meltdowns by a) making sure Ashlynne wasn’t present during them, or b) taking special care to tell her that the meltdown was not her fault.

Has it worked? Certainly. One night, when I was in serious self-abasement mode, my husband said, “Oh, for goodness sake. Look at your child. How is she doing? Good self-esteem? Basically happy? Friends she enjoys? Yes? Can we start dinner?”

Every child has challenges in life, whether that child has an Aspie parent or not. I have watched apparently neuro-typical parents do far, far worse things than have a meltdown. Ask me sometime and I’ll try to describe what they did without resorting to every curse word I know.

3. Inability to do fun kid things in crowds

When Ashlynne was small, I braved the wilds of Chuckee Cheese and insanely chaotic birthday parties. After awhile, though, I realized that I ended up with a migraine or a case of exhaustion. So, we worked it out for her neuro-typical dad and step-dad to do the crowd stuff while I did the more quiet stuff. For a number of years, I have not entered any of the following places: a mall, an ice skating rink, a roller-skating rink, a party, a downtown New Year’s celebration, the 4th of July fireworks, or a first-run movie.

Before I knew about AS, I felt awful about not being able to do activities in crowds. I kicked myself over and over because I was not the fun parent. I thought I was lazy and let my husband do all the work. Now that I’m diagnosed, I have been liberated from these kinds of distortions. These days, I just say to my daughter, “I’m afraid I can’t take you to the mall, honey. You know those places aren’t for me.”

Her response is usually, “Yeah, mom. It’s not like I haven’t noticed.”

If I were married to a crowd-aversive Aspie and had the same neuro-typical daughter, I would enlist the help of other parents. Some parents love driving and being in crowds. Really! It’s amazing. There are other things I can do, and working out an exchange of skills to keep a balance with other parents would not be difficult.

4. Hyperfocus and special interests

Most Aspies are capable of high levels of focus when it comes to our special interests and projects. I am no exception. When Ashlynne was born, I had to make the shift from having lots of time to do whatever I wanted to being on call 24 hours a day. Most parents find this transition a daunting one. I certainly did. I can very clearly remember organizing boxes of memorabilia, and then reorganizing them, and then reorganizing them some more, just to get back a sense of control.

The good news is that once you get into the swing of things, you can start including the child in the things you enjoy. I remember thinking that my life would really take off when I had Ashlynne, because I could include her in my activities. And that’s exactly what I did. I’ve always loved to go for long walks, so I did, with Ashlynne in her stroller. I love picture books, and lo and behold, so did she! As she got older, I could homeschool her and learn new things every day. I could share music and art with her. I could teach her to read and share my joy in it. I could shop with her at thrift stores. I could help her carry the pounds of books she took out of the library each week. There was no end to the interesting things we could do together.

Our Aspie Strengths

1. Ability to verbalize

Over the past 30 years or so, the phrase “use your words” has become a staple of parenting. If your child is screaming, you say, “Use your words and tell me what’s wrong.” If your child is hitting someone, you say, “Don’t hit. Use your words instead.” If your child is pouting, you say, “I’ll be happy to listen to you if you use your words.”

And what do we Aspies use in our interactions with other people? Words! Lots of words! We don’t read nonverbals very well, and we don’t use them to regulate social interactions. Words are our life rafts in a sea of social confusion.

Personally, I consider words holy. So, I have always used them to express what I’m feeling or thinking, and I have always asked Ashlynne to verbalize her emotions and thoughts in return. Her dad and step-dad are also verbal people, so she’s had plenty of good role models. As a result, she has always been able to articulate her thoughts and feelings.

2. Ability to create structure

Not all Aspies are good at structuring things, but those of us who have the structuring gene provide a great service to our children (so long as we don’t overdo it). Kids need structure, and they feel very secure when they have it. Our Aspie need for routine can play a very positive role in the life of a child, so long as we take everyone’s needs and interests into consideration. It’s an opportunity to work creatively with your partner and child so that everyone can get what they need and keep a modicum of sanity. It’s not always easy, but it’s very satisfying when it works.

My ability to create structure allowed me to homeschool for eight years. I loved it. I created a curriculum every year, made lists of books under each subject header, and kept a daily homeschooling journal for the school district. One of the reasons I enjoyed homeschooling so much was that I got to spend time with my daughter in a structured way while being creative with the learning process. 

3. Honesty and directness

Our Aspie capacity for being honest and straightforward can work wonders for a child. I grew up in a family with a mom who was, to put it mildly, a very unreliable narrator. It was intensely confusing for me to try and figure out how things really stood. I still catch myself stating something that my mother said as fact, and then having to remind myself that the story may not be true.

Fortunately, children of Aspie parents do not tend to have this problem. If anything, they may have the opposite problem: thoughts and feelings stated so bluntly as to be hurtful. It is very important to frame honest feelings so that a child can receive them in the most constructive way. I am very conscious about how I say what I need to say to my daughter at any given time. Sometimes, bluntness is the best policy, especially with a teenager. Sometimes, it’s the worst choice. When it’s your child, you know what works and what won’t.

4. A passion for justice

I’ve always had a heart for justice. It’s a wonderful and painful gift. If you insist on fairness, having a child is a crash course in how completely maddening the world is. Kids regularly come up against the insensitivity of adults who think that children accrue human rights over a period of years, rather than having been born with them.

Enter the Aspie parent, who feels compelled to educate such people. Does it work? Usually not. I have written so many eloquent, well-considered, solution-oriented letters to people who weren’t capable of understanding a word I said. I wish I’d saved those letters. I’d compile them into a book called “If I Have to Explain Why, You Wouldn’t Understand” (with a shout-out to Harley-Davidson, who made the T-shirt with that slogan on it).

So, maybe you can’t change other people, but you can give your child a code of ethics that is sorely lacking in many kids. When we were homeschooling, Ashlynne and I would do lots of role playing about making ethical decisions—about not following the crowd to do wrong, about being inclusive, and honest, and keeping your word, and all the things that seem to be going out of style. She loved coming up with different ways to address ethical dilemmas, and the lessons have stayed with her.

5. Acceptance of non-conformity

If you’re an Aspie, you’ve always been in the minority. You’ve had to deal with being different, with being the odd one out, with being out-of-step much of the time. As painful as these experiences are, they’re very valuable for a parent. I entered parenting with an acceptance of a fairly wide range of behavior and outlook. As a result, lots of kids congregated at our house because they felt safe there.

In conclusion
Our children don’t expect us to be perfect. They’re looking for integrity, and they want us to make our best effort on their behalf. They’re nowhere near as hard on us as we are on ourselves.

So if you’re an Aspie, and you’re considering parenthood, don’t count yourself out. It’s a great adventure.

© 2009 by Rachel Cohen-Rottenberg

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Creating Art from Found Objects

March 15, 2009 Rachel Making Art, Sensory Processing Issues, Visual/Spatial Skills

Some years ago, I visited a woman who made art from found objects. In her medicine cabinet, she had rows of different colored bottles with marbles on top. Sitting on her shelves and hanging on her walls were beautiful, colorful, sparkly creations. Everywhere I looked, I saw art made from objects that had been lost, thrown away, or forgotten by other people.

Friday morning, I was thinking about this woman on my way to the library, daydreaming about how fun it would be to make art objects like she did. As I was walking along, I looked down, and there on the ground was a small, beautiful beaded earring! So I picked it up and realized that I had begun. On my way home, I bought some wire and a pair of wire cutters at the hardware store and started getting excited about all the things I could make.

Later, I gathered some old beaded decorations that my daughter and I had made long ago. They were all tangled up and packed in a box in our garage. While I was there, I noticed a small organizer box with clear plastic drawers. We’d found it at the transfer station a couple of years ago, but had never used it. After I brought the box and the beads into the house, I started collecting old spoons we no longer use and some earrings, rings, and bracelets I no longer wear. After several trips, I got everything into my loft, where I spent a good hour or two unstringing the beads and organizing everything into the little drawers. Such bliss!

On Saturday morning, I woke up before dawn, thinking about what to make out of everything and how to go about it. I couldn’t shake all my ideas and go back to sleep, so I went up to my loft and began. I love hanging objects, especially mobiles and wind chimes, so I started making a mobile. Several hours later, here was my first creation:

 

The colors sparkle in the sunlight from my skylight, and when you spin it, the spoons all splay outward to very nice effect:



















After taking a walk, I decided to make a second mobile. This one was made from two ankle bracelets my daughter had given me, a charm bracelet, several old pairs of earrings, the earring I found yesterday (of course), and a really cool marble pendant. I was going for the effect of a crown. The piece might be finished at this stage, but I’m not sure. I’m thinking that I might add something to the wires on top:
















Working with my hands seems to bring all my senses into harmony. I felt great yesterday, just as I did last Sunday, when Bob and I made the hamentashen and rugelach. I felt grounded in my body, with a fullness of energy and happiness that I haven’t felt since I was a kid.

Maybe I should skip the OT visits and just do art? (Kidding. My first appointment is tomorrow.

© 2009 by Rachel Cohen-Rottenberg

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Coming Out as an Aspie

March 11, 2009 Rachel Communication, Friendship, Marriage

Ever since my diagnosis in November, I have been struggling with the question of telling people that I have Asperger’s. In the beginning, my husband told his father and his brother, and they were very supportive. Soon thereafter, I told my daughter. Her main response was surprise. She had met a boy her age with Asperger’s, and his presentation was very different from mine. I took the conversation as an opportunity to talk about how male and female Aspies present differently, and to share the strategies I’ve used to make my way through the world as an adult. We had a great talk.

At the outset, I also emailed two of my oldest friends, one who lives in Minnesota and one who lives in Utah. They were completely supportive, and still are.

Having no problem with extremes (when they don’t involve visual, auditory, tactile, or emotional stimuli), I then made the transition from telling my closest friends and family to telling anyone with a computer and an Internet connection. I didn’t start my blog as a coming-out project, but once I decided to blog under my own name, it soon became one.

Oddly enough, I haven’t felt anxious about tossing my anonymity to the wind. It feels very liberating to stop hiding who I am, and writing is my natural medium. When I write, there are no visuals to distract me, no eye contact or processing delays, and no possibility of visual or auditory overload. I have time to clarify my thoughts before communicating them. It’s ideal. While other people decry the fact that the Internet is taking the place of face-to-face communication, I am very grateful for a medium that allows me to make friends and interact with people without becoming overwhelmed.

Of course, as an Aspie, the middle ground is always the most difficult for me to locate. Telling all the people who reside somewhere on the continuum between close family and total stranger has been a challenge.

I decided to begin by sending an email to my friends Kim and Dave. They are wonderful people who have invited my husband and me over for dinner many, many times. We have always put them off and I began to feel that I should tell them why. I really love them and want to spend time with them, but the sensory overload of more than one person at a time is so difficult for me that I haven’t been able to do it.

The email I sent explained about the Asperger’s and my associated sensory processing issues. I also included a link to my blog. When I didn’t hear from them immediately, all my fears started surfacing. Were they upset because I’d used email rather than meeting in person? (I’ve had that experience before.) Were they overwhelmed by all my words? Were they writing me off as broken or weird? I should know by now that most people need time to read and digest new information, but I often forget that essential fact.

After about a week, I got an email from Dave. He began by expressing his shock at learning about my autism, for which I couldn’t blame him, because I was pretty shocked when I first discovered it, too. Then he wrote the following:

“I sense this is really amazing for you, to be able to understand and make sense of so many parts of your life…It seems truly great that you’ve been able to learn, find support, and process accordingly, setting up the limits and structures that fit you…Reading through your blog entries, I’m struck by your amazing courage at facing this and exploring deeply. It seems like you’re creating a re-alignment of sorts for yourself. What a lot to process and assimilate…All the best as this major new development unfolds in your life. I look forward to finding the new ways for us to stay connected over time.”

After getting such a great response, I took the next step of sending email to a wider circle of friends. Almost everyone responded and all the responses were positive. Here are some examples:

From Jim: “You really are something else! How many people have I ever met who are diagnosed with anything and see it as a gift…I so enjoyed reading this and learning.”

From Liz: “What an amazing revelation! And to have made this discovery after all these years—how remarkable how you say the pieces now all fit together. Thank you for sharing this with your friends. I’m looking forward to reading your blog and talking to you more about this next time we get together.”

From Sue: “I feel so honored to be included in your discoveries. I have been reading little bits of your blog daily and love it…[I] wanted to let you know I received your gift and send you hugs.”

From Irene: “Little by little, over many days, I made my way through this journey of your life’s discoveries and am so happy that you have been able to pull, as you put it, the missing pieces together. A good many diagnosis causes depression and despair, this diagnosis has been a blessing.”

I’m discovering that my friends really love me. Wow.

I’m also finding that I still resist getting together with them. For instance, I’ve been trying to find a time to meet up with my friend Ramon. He knows about my Asperger’s and sensory processing issues, and he has been very kind and supportive. With winter and flu season in full swing, it’s been difficult to get together. As the snow thaws, though, I want to make plans with him, but I find myself very anxious about seeing him in person. Though it’s been many years since we’ve gotten together, he’s the last person in the world I should worry about seeing. He’s one of the kindest and most genuine people I’ve ever met.

So what’s the problem? Being seen in person, now that my secret is out, feels very difficult. Being held in another’s gaze is so hard for me. I’ve spent most of my life trying to hide under a mask of competence, intelligence, and limitless energy. Now that the mask is off, I’m afraid of being seen. I lose sight of the fact that the only person in the world who feels ashamed of me is…well, me.

What am I ashamed of? I’m not sure. It’s more a habit than anything else—a habit begun in childhood, when everyone had such high expectations of me and I was afraid to admit that I couldn’t do the simplest things. I’ve kept the habit going in adulthood, as I see so many of my former classmates do great and important work in the world while I struggle to get through each day.

After all these years, I still catch myself feeling that I’m supposed to be someone else. It’s a hard habit to break. My family and friends, however, seem quite happy with who I really am. They seem to feel that I am just fine.

I should get into the habit of taking their word for it.

© 2009 by Rachel Cohen-Rottenberg

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