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!
I speak with a researcher who says, “we need to hear the pain and needs of the parents of individuals affected by the disorder.” She goes on to say, “Nobody else can know better what the needs of the affected person are.” “Oh,” I say, “how about speaking with Autistic people?” Surely they know better than any what it’s like to have once been a child. The researcher tells me this is not their focus. I try to understand what I’m missing, what is the focus then? I ask more questions. I listen. As I listen I am aware of my heart. It feels louder, is that possible I find myself wondering. Can one’s heart actually beat harder? I decide this cannot be true. I’m upset. I know I become more aware of my heart when I’m upset. I try to listen to her words, but I’m not able…
Today is the first day in a week that I feel myself climbing out of the abyss of mental frustration and physical pain. Well, the pain is still there, though the screams have softened into mere staccato expletives while in the act of eating and drinking. I had a relatively clement luncheon of roast pork and tomato salsa with rice, and I finished the last two lemon cupcakes. That is an achievement indeed. I am also in the midst of writing up the proposal for my upcoming exhibition. This, to me, is really good news indeed, some work at last!
My thought for the morning was a poignant quote from this post in Emma’s Hope Book:
The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem. We are raising a population of children who are internalizing the awful message given to them… Our children, who will grow up to be Autistic adults, are getting this message from almost everyone they come into contact with from the moment they are given the diagnosis. It is a message that is hurting our children and hurts all Autistic people. Our children, whatever their neurology hear it,and those who have internalized it may go on to deliver it too. It is up to us to change the message.
Ask a parent what they want most for their children and most will say, “Happiness.” Yet so much of what we are told about autism and our Autistic children is ensuring the opposite outcome.
Chicken and corn soup, salsa with roast pork, and lemon cupcake
Asparagus and spinach soup, bread and brie
A master in the art of living draws no sharp distinction between his work and his play; his labor and his leisure; his mind and his body; his education and his recreation. He hardly knows which is which. He simply pursues his vision of excellence through whatever he is doing, and leaves others to determine whether he is working or playing. To himself, he always appears to be doing both.
There is a delicious (but horribly sinful) snack in Singapore, “bakwa,” which is basically meat jerky (in Singapore, pork is the preferred meat, but in other parts of Asia, they also use beef). The Bee Cheng Hiang company is one of the largest there, with branches in many other countries. My favourite are the bacon strips! Horrors of horrors, oui? Yes, I know, I do horrify myself at times, but ah well. Anyhow, I’ve experimented on DIY versions, nothing has ever come close, of course, but my own experiments have turned out pretty delicious nevertheless. Continue reading →
Ever the avid Foodie Aspie Bunny on a budget, I’ve been experimenting with microwave potato crisps for a long time now. I’ve never managed to get it quite right – they were either too soft, or overcooked and hard – until this last try. At last, just the right crunch and snap!
The trick, I think, is to microwave on high in 2 or 3 minute stages, checking on the progress each time. The potato slices need to be flipped over too. Preparation is simple, just slice, toss in olive oil, salt and pepper to taste. You can add paprika too, but if you want cheese, remember to add it at the end or the cheese will be overcooked. Continue reading →
With olive oil, feta, spring onions and dried cranberries
Still in non-verbal mode here, so here are some visual images. I love tomatoes. The colours help to cheer me up. I got these from Harris Farm, Aussie grown, and I am going to try and grow these in my balcony. Wish me luck. We’ll find out in the summer, I suppose? They taste great stuffed with feta cheese and brie. Oh, and with dried cranberries too!
Another day crashed and washed away, down the abyss into nothingness. Nothing achieved. Apart from cupcakes. The only important activity in my day today was hugging and cuddling my Angel. Well, here are some visual images, taken over the last few days of struggle, that have brought me a measure of comfort… Images that trigger more than just visual pleasures of symmetry, asymmetry, colour contrasts, shape, pattern etc, but also associations with motion, movement, taste, smell, texture, personal history, nostalgia, and emotional connectivity.
Sensory contradictions. Shivering cold. Sizzling hot. All at the same time, in different places, different parts of the same body. Burning hot cheeks. I could cook an egg on them. Burning cold head. Icicles pierced through temples. Pounding. Pain. Feet and shins encased in ice. Fingers scorching keyboard as I type. Eyes roasting inside sockets. Throat throbbing, febrile.
Physical and mental exhaustion. Battling spectres, boxing at shadows in surreal half light, each movement fanning the flames of torment.
“I need to work!” a voiceless hissing whisper inside my brain. Wriggling worms. Tired from endless gyrating, compelled by unknown force, twitching and writhing in wild a-rhythmic threshing towards ominous fate. Work is not drudgery to me. Work is relaxation, expansion, deep breathing and meaningful living. Being incarcerated by physical impairments, forced into inaction, that is wretchedness. Continue reading →
This is most distressing. Disabled people are treated badly in myriad ways, some subtle, and others not at all subtle. Reading about someone else’s tragedy may make you empathic in a distant way, but Kateryna is a friend of mine, and the frustration and anger I feel is thus all the more palpable. There is something very very terrible with the system by which the world operates. I could go on, but I shouldn’t. This is Kat’s post. Take time to read it. Thank you.
I am alive. I am also annoyed. I keep trying to update with nice things like the fact my carer is awesome, and the agency sucks. I keep wanting to update on helpful things. Instead I am going to paste my facebook status about Washington Federal bank who stole from me. Flat out. Stole. Shocking? Doubtful. It is a bank. Do I want this passed on? Yep. If you are with them should you run? Far and fast.
This post is public. I want to have you all share this because the bank Washington Federal is underhanded, slimy and needs to lose customers. I didn’t ever open an account. They bought my bank. The building is in accessible. My account was bought out in 2008. The first thing they did was lose it. I had to find proof of my account amid surviving my exhusband’s attempts on my life, my…