This blog is dedicated to the three most special people in my life:
my beautiful, big-hearted baby sister and her valiant, generous hubby, and my most loyal and supportive friend YS – thank you for helping me eat better, look beyond my feet, reach out, live my dreams and keep on keeping on, knowing always that I am loved!
The sensory nightmare continues – Miss USA Door Slammer has been hard at work with the increasingly vicious and violent slamming, as if this was her one grand mission in life. But I have been valiantly plodding on. There’s good news to relate, though. I have at last found a place to move into! A sweet little space back in our old neighbourhood. I am so relieved! The grand exodus will take place this weekend. In the meantime, I have been valiantly forging on, feeding myself with as much gusto and as cheaply as I possibly can. However, I have been feeling a screaming stretto of mounting anxiety and agitation, because my work has been punctuated with so many frustrating holes, the mental-visual landscape is that of a very large and ugly block of Swiss cheese!
I need a Jeeves. He or she will do the dishes. Cook when I am buried in work and not feeling like it, but let me cook when I want to. Do the grocery shopping and laundry. Keep the physical environment clean and organised without disturbing the ordered chaos of my work space.
Oh, and there’s the electricity supply and internet connection to take care of too.
Mounting stress. The noise is a cloying, overwhelming force dragging us both further and further down into the seething darkness of desperation. No rest for the weary. Literally. But there is still food. And an Angel. Though even my Angel is suffering too. I need to work harder to get us out of this quagmire. And… as I type… my bones shake, my flesh aches, my belongings rattle from the incessant sharp violent door slamming. Sometimes, it occurs so frequently in dramatic sequence, she must be doing it deliberately? Now everyone else on the floor is following suit. I can hear her footsteps now, pounding the hallway in those flipflops. Yes, flipflops can pack a good wallop on a carpeted floor too!
Grappling with and at the mercy of ignorant fools who have no shred of consideration or empathy for people of a different ilk, a gentler, peace loving, quiet seeking genre, so different from their brutality and turbulence. Continue reading →
Very sad. Austistic advocate banned for being too passionate (and hence allegedly using ‘offensive language’ which were merely expletives), but haters openly abusing autistic persons not banned. I used to like TPGA, for the same reasons as many autistic people. I have been saddened by the recent developments, and this final one just made my already heavy laden morning crash. Into the abyss. Disappointment indeed.
Okay, so, it’s with a heavy heart that I announce that no longer will I recommend the Thinking Person’s Guide to Autism book or community as if they’re on my mental list of good parent resources. They’ve been demoted to “less bad.”
Because of their continued, and worsening, treatment of autistic adults on their community facebook page, which came to a head last night and the night before. For a long while now, autistic people have been held to a higher and higher standard than non-autistic parents in the comment threads of TGPA. It had gotten to the point that some autistic users complained of a seeming “parent’s code” that appeared to prevent real criticism by parents of other users who were parents.
This phenomenon was apparently out in spades Sunday night (I was not there and so cannot speak to it myself) and was definitely apparent last night…
Dark eye circles. Deep crevices under droopy eyes, squinting from exhaustion and lack of sleep. Jaws clamped so tightly the head throbs from the pain. Beside me, my Angel tosses. She sighs loudly and shudders. It is not cold. She whimpers and shakes in her dreams every night these days. She never used to do so this often. She licks herself far too much these days, she licks the sheets in her sleep. Lick, lick, lick. We are both weary under the constant sensory assault of noise. Noise along the corridor. Noise emanating from the rooms. Sudden explosions from slamming doors which rattle and shake everything inside our little abode. Shrieking, screaming, laughing. Loud music. Even as I type right now, there is cackling piercing the air, coming at us through the flimsy building materials that merely visually separate our private space from the public cacophony. Continue reading →
The song that looped in my mind this morning while out walking with Lucy was Cole Porter’s “I Concentrate on You.” I was thinking about Lucy, and how she has made such a tremendous difference to my life. People often stop us and ask me what Lucy does for me, as my service dog. Most of the time, they are polite and genuinely curious to know. I take it as part of advocacy, not just for autism and how service animals can improve our lives, but also for Greyhounds as companions and the human-dog bond. I do not only focus on what service dogs can do for us human, but also on what our responsibilities are towards our close animal friends. It is a symbiotic, synergetic relationship. Continue reading →
Food reflects culture and mental states. Especially the meals of a foodie. My breakfast this morning was a combination of effort at Self Cheer and textural visual reflection of a dull aching oxymoronic state of throbbing-melancholia. Soft boiled egg with mayonnaise and plain yoghurt on a bed of cheap Aldi bacon (microwaved for less olfactory intrusion) and spring onion sprinkles, accompanied by cheap Coles coffee laced with cheerful caramel chocolate. The aroma of the caramel was balm to my sensory discombobulation.
We had another rough night. No rest for the weary. The Door Slammer kicked off the fabulous evening with a supremely noisy party. Her visitors traipsed in, announcing their arrivals with less pomp than raucous ceremony, then the customary now obligatory door slam to welcome each one’s initiation into invigorating zest for Extreme Neurotypical life. Then came the cacophony, introduced by loud out of tune singing of Happy Birthday, then variations on a trio-theme of Shriek-Scream-Guffaw. In and out they went, revitalised no doubt by every sharp slam of the door. No, I was not standing outside. Our units are separated by several feet along a corridor. My door was closed. But I could hear ever single sonic embellishment. Then, thankfully, towards midnight, there was a mass exodus to another party venue, and although the exit was marked by brilliant screeching coloratura and booming basso continuo, I heaved a sigh of relief.
I am thinking of you today. I think of you every day. You live in me. But today marks seven years since you left. I wasn’t there to say a final goodbye. My only one regret in life. I promised to bring you lanterns to hang in your room, it would have been just a few days longer before I returned, but you could not wait for me. I understand. The agony was too much. I just wish I was there to hold your hand.
Remembering you always, daddy.
You weren’t the regular dad, I cannot remember you ever hugging me. But that was ok, we are both Aspies, we don’t need that kind of affection. Not much anyway. All the other things you shared with me, gave to me, and taught me: these filled me with so much more than the hugs and kisses that other dads give. We are different from other people. And it is that special difference that I will always treasure. You left me with what I love, all that I can embrace and be enwrapped inside. You left me all that I am and am still discovering that I can be. The inspiration, the art, the music, the songs, the dancing, the literature, the science, the love for dogs, the enquiring mind, the relentless pursuit of knowledge, the hands on zest for practice, the minutiae, the sensorial delight, the multimodality and multidimensionality that gathers all that makes my life full. My polymathic idol. My Golden Standard. Thank you for the autistic brain. Your last word to me was to return to where I belong, to pursue who I am, “It is time you went back to your music and art. That is you.” Thank you for this final legacy and for giving me the means. I hope you are proud of me.
Oh, and Fred Astaire. You loved Fred. And so do I. They can’t take that away from me.
Oh what fun. More shenanigans in the wee hours. Today’s ensemble features the Chinese guy directly across my unit and three others of his pals, most likely from other surrounding units, performing the Door Symphony in B-crushed-flat! They started just after midnight, and at 7am, when I finally managed to drag my aching body out of bed for our first morning walk, they were still there in the study room. Hunched forward in crumpled hoodies pulled over their heads, the table cluttered variously with food wrappers, laptops, books, a mini water dispenser, one of the study room chairs had been placed atop the table (why, I don’t know) and the floor littered with scrunched up paper. By then, they looked somewhat moldy, and there was a palpable odour of stale surliness mixed with the sweat of the unwashed. What a glorious cadential close to the marathon. Continue reading →
Jolted from my sleep at 3.30am by a smashing crack! Heart thumping wildly, as if wanting break free of the ribcage, I broke into a cold sweat. The seeping, sickly warm-cold sizzle of fear crawled up my back and clamped around nape. The Door Slammer was up and about. Again. A faulty hydraulic door stopper? No doubt, but knowing that, why couldn’t she make sure to hold the door and close it manually? Doesn’t the sudden explosive crack bother her at all? Obviously not. The terrible thing is, this person persists despite already having been spoken to by the building’s manager. What is worse, since the manager sent out an email to residents about the noise and door slamming issue, urging everyone to be more considerate, a few others have now decided to join in the fun and games, as if in defiant retaliation. Will it, can it get any worse? The saga unfolds… Continue reading →