Coping (or not) with the holidays
01 Jan 2011 25 Comments
in acceptance, Asperger's, autism, gratitude, Love Tags: acceptance, Asperger's, autism, belonging, gratefulness, Love, sensory overload
The Before and After Comparison:
Today I am assessing how I handled the holidays this year compared to other years, now that I self-identify as an Aspie. What difference has my “diagnosis” made in my ability to cope with the social stressors of the holidays?
My Family:
All my family gathered for a few days at our home for Christmas. We had eight people (my wife and me, our two sons, our two daughters, our son-in-law and our grandson who is one-and-a-half years old). We also had five dogs in the house (our two, our son’s, and our daughter’s two). We live in a relatively small house of about one thousand to eleven hundred square feet, so it was fairly cramped for space.
I am always very thrilled to have the whole family together under one roof. It gives me a sense of contentment — that all is right with the world at least for now while we are all together. I think it brings back feelings of warmth and love that remind me of when the kinds were young and we were all together every day and night. I consider my family members to be my biggest blessing.
My family is very supportive, courteous, and caring towards each other. We don’t argue, attack, or put people down. The social atmosphere is very pleasant in our home and everyone seems to enjoy the reunion. Even the dogs enjoy each other’s company. Of course it is particularly enjoyable to see our little grandson playing with his toys and board-books; it brings back memories of our own kids when they were small.
In Retreat:
However, I spent the majority of our holiday time in retreat in the bedroom where my computer resides. This is because I know that engaging socially is such a tremendous energy drain for me. This is particularly so when there are multiple conversations occurring. And there is the sensory overload from the sounds of music, bright lights, toys, dogs trotting around, etc.. To avoid exhaustion I need to retreat and have a lot of what I call “down time” where I can be quiet. I seem to just exhaust all my energy when I am in social situations.
A Major Difference:
A major difference this year was that, being conscious of Asperger’s and my need to limit stimulation and the stress of conversation, I managed to withdraw to my room prior to reaching a state of exhaustion from too much socializing. I then could enjoy my down time, and then return to the group situation later, feeling refreshed and ready for some more contact. I would then retreat again before exhaustion got the better of me.
In previous years I would often remain engaged too long, get exhausted, and crash on my bed unable to enjoy my down time, and too far gone to recuperate sufficient energy to re-engage. This state of exhaustion I usually found very depressing, and I would be quite angry with myself as well.
I Congratulated Myself:
This year, while my family were all here, I found myself wishing that I could be with them more, but I congratulated myself on managing my energy well, and I knew I was doing my best and doing the right thing.
Then Sadness Crept In:
However, when my older daughter and her family left for their home three hundred miles away I slipped into a bit of a depression that lasted a day or two. This was partly because I knew I wouldn’t be seeing them for a while, but also because I got down on myself, annoyed, and disappointed with myself, for not being able to spend as much time with them while they were here as I would have liked.
I Felt Accepted the Way I Am:
But the bottom line is that I believe everyone had a great time gathering together and seemed to enjoy each other very much. I am not aware of anyone being upset because I retreated upstairs (I guess that after seventeen years of Chronic Fatigue Syndrome disability they are accustomed to me taking breaks).
Focus on the Successes:
So I am trying to focus on the fact that I did have some time with my kids and grandson, and not worry about all the time I could have had if I were someone else! And I am feeling quite good about our family gathering and the way my new understanding of my Asperger’s helped me to manage my energy.
Blessed by my Family:
I am so blessed by my family’s love and acceptance and by their gathering here for Christmas.
Support from Bloggyland:
And I am so very grateful for all the support and encouragement I have received from my Bloggyland friends. You have given me a base of acceptance, and a sense of belonging that is new for me, and this is very empowering. I am moving forward in a way I could not have imagined prior to meeting my fellow Aspie/auties in Bloggyland and getting to know myself through your writings. It is such a relief to have found people who understand me in my depths, without needing an explanation. Thank you all so very much. Love and hugs to all of you.
Touch, Texture, and Pressure.
17 Nov 2010 8 Comments
in Asperger's, autism, senses Tags: Asperger's, autism, senses, sensitivity, sensory overload, texture, touch
Touch, texture, and pressure are things I have been sensitive to since I was young.
Pressure: I enjoy having covers pressing down on me. My mother always made beds that were firmly tucked in at the foot and even the sides. I like the feel of weight on me and so I am unable to sleep if I have only a sheet on top of my pajamas. I usually have a sheet, one blanket (at least), and a comforter. Lately, since switching to a long queen size mattress, I have found that the weight of the comforter and blanket puts sufficient pressure on my feet that I no longer need the sheet and blankets tucked in at the foot. This is because my six-foot-one-inch frame no longer overhangs the foot end of the bed. I think if my feet still hung over, it would be essential to tuck in the sheet and blanket. I also prefer, when lying on my side, to have the covers drape down and completely cover my back and front with no air gap. I seem to need to be in a cocoon. (Rachel has a post on a weighted blanket).
Texture, especially of food, is also important to me. A few days ago my wife made a lovely squash soup. It had chopped onions in it which added to the flavour. But there was also chopped parsley in there and I could not handle the texture of this. I had to remove the tiny morsels from my mouth and then spoon around the remaining parsley in the bowl. I also dislike the sensation of wool against my skin. Cotton is my favourite fabric. I dislike having polyester blended in because a shirt made of a blend feels to me like a plastic bag. I want my clothes to breathe.
Touch has been an issue all my life. I remember many a physical exam when the physician tried to check my liver, spleen, etc., by poking his fingertips into my abdomen. I found this so unbearably ticklish that I would recoil. And my mother had the habit of getting my attention by lightly touching my arm with her fingertips. I found this irritating, but did not know why at the time and therefore never thought to ask her to not touch me lightly. Now that I have reached retirement age, my nerves seem to be degenerating (neuropathy) and I find I am much less sensitive to touch.
This pickiness, or sensitivity, may seem trivial compared to the pain caused by glare or the confusion caused by noise at a lunch table. But it is among many other things that made me feel different. One reason for writing these posts is to document my experiences and open them to scrutiny (comments). Perhaps some of this is just unique to me and not part of the spectrum. But by exploring my past in these posts, I am gaining understanding and insight about how and why my life unfolded as it did. Hopefully this process will enable some readers to relate, and feel a little less alone, just as I did when I found this blogging community.
Snow
08 Nov 2010 8 Comments
in Asperger's, autism, senses Tags: Asperger's, autism, sensory overload, simplicity
I woke up to snow on Sunday October 31st. It was peacefully exhilarating if that is not a contradiction in terms. I felt happy to see the snow return. It reminded me of how I like the winter so much.
There was a transformation of our yard. The day before it had been a jumble of brown leaves, green grass, gray stones, black earth, a green deck, a red upside-down canoe, and yellow wilting plants. Now everything was covered by a blanket of smooth white snow. Chaos had been transformed into uniformity and simplicity. The cars sound so quiet on our gravel road when the snow dampens their tire sounds.
Snow brings the relief of simplicity and silence. There is a great reduction of stimuli for my brain to process. All is a soft subdued white, except for the grey tree trunks, and some green spruce and cedar boughs peeking through the snow.
My world is all covered in soft country-white snow.
So soothing, peaceful, simple, and silent.
Unfortunately it only lasted a day, but I know winter is coming soon.
The Joys of Socializing
04 Nov 2010 12 Comments
in Asperger's, autism Tags: Asperger's, autism, Brain Fog, burnout, eyes, glare, memory, noise, sensitivity, sensory overload
The joys of socializing were experienced by me again yesterday and I was reminded of why, even though I enjoy it in small doses, I make sure the doses are few and far between.
First of all I would like to say that, contrary to comedic stereotypes, my mother-in-law has always been kind to me and I have no problems with her as a person. Secondly, I post this not in search of sympathy, and not to complain, but to document my life on the autism spectrum. I hope such documentation may be of help to others, as I have benefitted so much from the blogs of my fellow autistics/Aspergians who have shared their lives.
Yesterday my wife and I visited my mother-in-law, who lives about a one-and-a-half hour drive away. My wife drove. There was a short visit and then my wife and her mother went out to do some grocery shopping while I walked for some exercise.
After they returned there was some more socializing in the living room. The low sun was shining into the room from over my shoulder as I sat with my back to a large window. The bright sunlight was hitting my mother-in-law’s white slacks. The dazzling sparkling glare was so penetrating and painful to my eyes that I put on my sunglasses. My mother-in-law asked if I could see in the room with my sunglasses on. I assured her that I could see just fine and attempted to explain about the glare from the sun. I quickly realized that my explanation was being met with polite incomprehension and possibly the feeling that I was nuts.
The radio was playing classical music fairly loudly in the next room. My wife was yelling in order to converse with her partially deaf mother. The pain in my ears was unbearable. I considered going back outside to walk some more but rejected that idea as rude since there had been so little social time with my mother-in-law. I picked up my backpack and retrieved my earplugs. I held them in my hand and thought of inserting them in my ears to gain some relief. I vacillated several times and returned the plugs to my pack as I did not want to appear rude.
On the drive home, to shield my eyes from the low sun, I tied my scarf over my sunglasses like a blindfold (as I said, my wife was driving 
). I commented to my wife that I felt so very tired.
The sensory overload from sight and sound had drained my brain. Later in the evening, when I tried to put some comments on friend’s blogs and reply to comments on my blog, I found that I just couldn’t think. It was as if my brain was mush. When I was diagnosed in 1993 with Chronic Fatigue Syndrome I learned that this was called “Brain Fog.” Writing was really difficult. I managed to write a couple of brief comments or replies, if I remember correctly. I noticed that Rachel and Laura had each posted on the “cure” but my brain could not remember from the beginning of one paragraph to the end, so I couldn’t follow their well written arguments. So I decided not to comment at all on the “cure” (partly because, being new to the community, I am not up on the issues, and partly because I was struggling so much with my thinking and writing).
So now it is almost twenty-four hours later and my brain is still somewhat foggy. I probably shouldn’t be writing. I am still tired and feeling rather numb in the head, although I am on the mend. I got a phone call from my doctor’s receptionist this afternoon reminding me that I have an appointment on Monday. This took me by surprise as my brain supplied no memory of an upcoming appointment. The receptionist then told me that I had made the appointment for the purpose of getting my memory tested! Good grief!
So was it all worth it? Yes, it was nice to see my mother-in-law and to have an outing with my wife. But I don’t think I’ll do it again tomorrow. At least not until the fog lifts.
Noise
16 Oct 2010 2 Comments
in Asperger's, autism, senses Tags: Asperger's, autism, noise, senses, sensitivity, sensory overload
Noise. What most people refer to as sound is often experienced by me as unpleasant noise.
Before I had to go on Long Term Disability benefits many years ago, our team at work would occasionally go out to a restaurant to celebrate someone’s birthday. The noise level at the table was very high and we were surrounded by tables with similar high decibel conversations. When trying to listen to an individual near me at the table, I would not be able to filter out the other conversations. All the sounds just blended in to one confusing noise. If I cupped my hand to my ear I might be able to grasp a bit more of what was being said to me. I am sure they all thought I was quite deaf.
My hearing actually tests out as very good when I am in one of those sound-proof rooms and the audiologist feeds me one word at a time. My hearing falls apart when I have to separate a word from a jumble of words all coming at me at once. My specialist (ENT) says this is a problem in my brain (higher processing level) as my ears are fine.
When my family is sitting around the table socializing I often need to have some “down time”, so I go upstairs and try to read. Unless I put in earplugs or wear ear protectors, I have a very difficult time reading because the words coming in my ears get all mixed up with the words on the page. This also happens if the radio or TV is playing.
If the text reads:
Look! See Dick run. See Jane skip. See Spot jump.
it will come out something like this if the radio is on:
Look! Do you See think North Dick Korea will run See develop nuclear Jane skip weapons and See Spot bomb jump us?
except the colours aren’t there, which makes it even more confusing.
Trying to read under such conditions just sucks all the energy out of me and I am left exhausted with my head hurting and all my brain circuits flooded. I have to put the book down because my mind just can’t cope.
Not all sound is noise to me. I find I can hear one-on-one conversations in a quiet space. And I do enjoy some music very much. There is a tea-room in a small town not far away. The owner plays Baroque or Renaissance music, or nature sounds, at a soft level. I find it soothing. It enhances my enjoyment of the meal.
But when I was at the ENT specialist a couple of weeks ago there was a pop radio station, with a motor-mouthing DJ, playing through a ceiling speaker. I was trying to read a magazine. I felt like asking the receptionist if they had ever surveyed patients’ preferences as to sound bombardment. I didn’t ask because I have grown accustomed to being the odd man out.
Four Pairs of Sunglasses
12 Oct 2010 Leave a Comment
in Asperger's, autism Tags: Asperger's, autism, eyes, sensitivity, sensory overload
Yesterday I posted about wearing four pairs of sunglasses: this is how I did it:
A is a pair of large sunglasses designed to go over prescription glasses.
B is my regular prescription glasses.
C is three rigid thin plastic sunglasses designed to slide behind regular glasses. They are made from sheet plastic and shaped to hook over the top of regular glasses and hang behind. I stacked three of these together and hung them behind my regular glasses.
(note: if the regular prescription glasses were tinted then there would be five pairs of sunglasses).
Glare
11 Oct 2010 13 Comments
in Asperger's, autism Tags: Asperger's, autism, eyes, glare, sensitivity, sensory overload
Glare! Sunshine, blue skies, orange, red, yellow and gold leaves on the trees, and I needed four, yes that is four, pairs of sunglasses to drive home from the big city about one and a half hours from here. I would have used five pairs if I 
had another in the car. It took that many to reduce the light hitting my retinas to a bearable level. I am talking about the kind of day that most people would have revelled in with one pair of sunglasses or none.
Bright light, and glare from car windows and chrome, can feel like skewers jabbing into and through my eyes. Even closing my eyelids fails to give relief. Multiple layers of sunglasses or a dark room are my only remedy. Without shades, and sometimes even with, I get stressed and exhausted because the brightness is so unbearable. I just can’t wait to get home and find relief in the shade of our trees or the darkness of my bedroom.
And the outdoors is not the only source of glare. My computer screen is turned down to the lowest level and I still find it too bright so I am typing with my eyes shut. (Thank goodness for WordPress’ spellchecker!). I also find some of the chairs in doctors offices to be a source of jabbing pain in my eyes. These are the chairs with chrome plated metal frames. They often have padded cloth seats and backs. The metal frame reflects the flourescent light coming from the ceiling and I must avert my eyes. There are usually so many such chairs that I have no place to gaze, so I resort to closing my eyes. Even a polished tile or wood floor will reflect sufficient glare from the room lights that I hold a magazine at the correct angle to block the reflection.
I also find myself moving a box of kleenex or a bottle of juice, while I’m eating, so as to block that jab of glare on the table. Sometimes I hide my knife under the edge of my plate because of the brightness. Reflected room lights bouncing off the window at night have me shifting my chair or closing blinds so I can converse with my family.
I don’t personally know anyone else who goes to these extremes to avoid light. So I thought I’d post my reactions in case there are others out there who know what it is like to have skewers jabbed into their retinas. This way perhaps they won’t feel so alone! And no, I’m not in the sunglasses business!
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