Friday, September 26, 2008
Sunday, September 21, 2008
Thank you, Jim.
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.
But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.
Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.
I invite you to look at our autism, and look at your grief, from our perspective:Autism is not an appendage
Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.Autism is not an impenetrable wall
This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say,"I wish my child did not have autism,"what they're really saying is,"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.
That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.
It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.Autism is not death
And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.
Yes, that takes more work than relating to a non-autistic person. But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.
Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at the same time the child being mourned for died.
But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives--
but it has nothing to do with autism.
What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.
You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.
This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?
Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go.
After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."
If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.
[This article was published in the "Our Voice," the newsletter of Autism Network International, Volume 1, Number 3, 1993. It is an outline of the presentation I gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]
Friday, September 19, 2008
3 tsps cumin seeds
3 tsps coriander seeds
0.5 tsp brown mustard seeds
5 curry leaves
1 tsp turmeric
0.5 tsp chilli
1 Tbsp ground ginger
2 cloves garlic crushed
2 tsp sea salt
2 cups hot water
1 cup peas/spinach
1 tin of crushed tomatoes
Grind up seeds (mustard, coriander and cummin) in your mortar and pestle.
Throw everything in slow cooker, except peas/spinach.
Stir so spices evenly coat everything.
Turn slow cooker on and walk away!
One hour before serving, add peas/spinach.
Stir again to mix vegetables through.
Have a cup of tea.
If gluten and dairy are ok - I'd suggest naan on the side and natural yogurt on top.
If gluten and dairy free - pappadums (made from lentil flour) and coconut milk to taste.
My kids even eat this. It's a very mild flavour, absolutely delicious.
Thursday, September 18, 2008
And I've actually had to tear myself away to get housework done.
So this morning (after making yummy pikelets for breakfast) I limited myself to one quick test.
ISTJ - "Trustee". Decisiveness in practical affairs. Guardian of time- honored institutions. Dependable. 11.6% of total population.
2 cups GF flour
4 teaspoons baking powder
300 mLs soy milk
1 teaspoon vanilla essence.
Sift flour and baking powder. Has anyone else noticed how hard it is to sift GF flour in a sifter thingie?
Pour wet ingredients into dry and whisk until batter is smooth.
Cook in a heated frypan, flip and serve.
We had ours with Freenut Butter or Tofutti "Better than cream cheese".
So while I spring clean today I will ponder the point of having all these mock products in the house...and consider making some jam.
Tuesday, September 16, 2008
This risotto is absolutely basic, and simply delish! The great thing about risotto is all that time you spend stirring, gives you a little bit of daydreaming/thinking time. Which as a solo parent, I don't get very much of.
Garlic Chicken Risotto.
500 grams skinless chicken breasts, cubed
8 cloves garlic, crushed
4 cups vegetable stock (warm)
2 cups arborio rice
Gently heat the oil and saute the garlic. Add the chicken and brown. Remove from pan and put aside. Pour rice into pan and stir until coated with oil (you may need to add a dash of oil). Heat until rice becomes somewhat translucent. Then add a cup of stock and stir until absorbed by the rice. Continue adding stock a cup (or ladle) at a time until it is absorbed. The rice is ready when nice and plumped but al dente in the middle. Pop the chicken back in the pot. Stir through and dinner is ready!
I have to say, this Gluten and Dairy free gig hasn't been all that hard. Dishes like this risotto have been part of my cooking repertoire for years. Other dishes we've frequently made have only had to have parts replaced. Now that we've found a great GFCF Cheese, we are once again enjoying nachos and tacos. With the help of ready made gluten free flours, pizzas, pikelets and cakes have become simple. And with Summer on it's way I am looking forward to eating a lot of salads and fruit. I am ashamed to admit that I don't eat any fruit. I buy it for the kids but I've never really got into it myself. So I have plans to make use of melons (cantelope and honeydew) for breakfasts. And I'm going to learn how to use my own barbecue!
Saturday, September 13, 2008
Gingerbread-style Gluten & Dairy Free Biscotti.
2 cups gluten free flour.
2/3 cup caster sugar
2 teaspoons ground ginger
1/2 teaspoon cinnamon
1/4 teaspoon ground cloves
1/4 teaspoon nutmeg
3/4 teaspoon bicarb soda
110 mLs water
1 tablespoon treacle
1/2 teaspoon vanilla essence
Preheat oven to 180 C.
Put flour, sugar, cinnamon, ground ginger, ground cloves, and nutmeg in a large mixing bowl. Stir together.
In a small saucepan, gently heat water and treacle, until dissolved. Add bicarb soda and stir briskly. Tip into dry ingredients and stir well. Lightly beat egg and add vanilla essence. Stir into mixture with a rubber spatula until the dough is smooth and shiny and the consistency is not unlike Play-Doh! On a baking tray lined with baking paper, form a flat rectangular shape. Bake for 30 minutes.
Remove from oven and allow to cool. Cut into slices about 2 cms thick. Lay slices on their side (so the cut surfaces are either up or face down) and cook for 10 minutes. Remove from oven, turn over and cook the other side for 10 minutes.
Remove again and allow to cool completely on a wire rack. The biscotti may still be soft while warm, but will harden by the time they've cooled down.
Enjoy with a good strong cup of coffee!
Friday, September 12, 2008
250 mLs Soy Milk
1 tablespoon Rice Vinegar
1 teaspoon bicarb soda
2/3 cup polenta
1/2 cup GF flour
1/3 cup sesame seeds
2/3 cup cheese *optional*(I used Delre Mini Chol soy cheese)
25 mLs oil
Preheat oven to 200 C.
Add vinegar to milk. This will make the milk curdle, and is essentially mock buttermilk. Leave aside while you measure out remaining ingredients (30 minutes is best so maybe have a cuppa as well).
Place polenta, sesame seeds and flour into a large clean mixing bowl.
When time is up briskly stir bicarb soda into milk/vinegar mix, then pour into dry ingredients and combine.
Lightly beat egg, add oil and pour into mixing bowl and stir through.
The batter should be quite runny. If you're adding cheese, gently stir it through now.
Pour batter into greased loaf tin and bake for 30 minutes.
For best results, allow to cool in tin. Serve with a smear of dairy free spread (and we're having it on the side of our Broccoli Soup!).
Thursday, September 11, 2008
Back to calcium! For anyone on a dairy free diet, there ARE ways to still get enough calcium.
Leafy greens are good (bok choy is best!), blackstrap molasses and sesame seeds are high in calcium. And soy beans and soy milk contain lots too! I found a very helpful list, which shows you how much calcium you're getting from alternative sources here.
4 "trees" of broccoli
2 large potatoes
2 litres vegetable stock
2 teaspoons of cumin
2 cloves of garlic, crushed
Cook in slow cooker for 6 hours (low) or 3 hours (high).
Puree in blender. Then serve or freeze.
Tuesday, September 9, 2008
But there they are>>>>
Before I give you the recipe, I'll give you a few tips to make life in crumpet-making town a little easier.
- Make sure your batter is runny. If in doubt, add water.
- Do NOT mix the batter between rounds. The air bubbles need to stay there.
- Be prepared to spend a little time making these. Keep the heat LOW and go slow.
- Don't expect them to look like shop-bought ones, because they're not.
- Keep It Simple!
300 Grams gluten free all purpose flour
3 teaspoons baking powder
1 sachet dry yeast (7 grams)
1 teaspoon caster sugar
400 mLs tepid water
Sift flour and baking powder into a clean dry mixing bowl.
Mix yeast and sugar into water and pour into flour. Mix until you have a nice smooth batter (I used a hand-mixer on low speed). Allow to sit while you prepare your egg rings and frying pan.
Once the batter has air bubbles that can be seen it is ready to cook. Pour into egg rings until 3/4 full and cook over low heat until bubbles form on the surface. Cover and cook until top is no longer runny.
When cool, pop in toaster and serve with drizzlings of honey. :)
Monday, September 8, 2008
Sesame Chicken Balls:
500 grams good quality chicken mince
a cup of finely chopped broccolli
a grated carrot
1/4 cup sesame seeds
3 garlic cloves, minced
a bowl of white rice
Mix everything except the white rice in a bowl until combined. Roll into balls and then roll in the rice to cover. Place in a steamer that has been lined with lettuce/cabbage/silverbeet over boiling water and steam for 30 minutes. Serve with honey soy dipping sauce.
This made too many for us, so I popped some assembled but not cooked into the freezer for a rainy day.
Sunday, September 7, 2008
1 packet Diego's GF Corn Tortillas
Grated mini chol soy cheese
scrambled eggs (free range, organic)
button mushrooms, sliced
To make this all happen at once, I preheated the oven to 230 C and popped the bacon in on an oven tray. Bake for 30 minutes.
I popped the mushrooms in the microwave with a knob of dairy free spread in a covered dish. Four minutes for 1200W microwave.
I scrambled the eggs in a saucepan with dairy free spread and a splash of rice milk.
For the tortillas, I sprayed one side with olive oil spray and heated until soft. Flipped over and sprinkled grated cheese on top. When cheese was melted, I removed from the pan, popped bacon, mushrooms and scrambled eggs in and folded over. Serve with freshly ground pepper and sea salt.
The mistake didn't happen in the kitchen. My mistake is kind of really a vent...
All of this was planned for my ex-husband. He sees the kids EVERY SUNDAY. And sometimes he's late. Like today.
And this means me trying to get the kids to wait for something until Daddy is here ends in tears. So while his lovely breakfast is congealing on the kitchen bench, Torin is howling in his room and Bridie is sulking. And I typed this one handed because the howling woke Edan who is now climbing all over me.
I give up trying to be nice. I really do...
Saturday, September 6, 2008
These were easy and another thing I could pop in the freezer for the looming school holidays.
2 cups SR GF Flour
1 cup water
3 tablespoons oil
0.5 teaspoons salt
Mix together to create a sticky dough. Pre-heat oven to 190 C.
Place on an oiled tray with a tablespoon and pat down to form small circles.
I topped them with tomato sauce (I forgot the tomato paste!!!), small circles of cacciatore, mini-chol soy cheese, oregano and slices of button mushrooms. Bake for 25 minutes and serve (or allow to cool and freeze).
We are loving this Spring sunshine. Finally I can coax the kids outside to explore the garden and enjoy the sun. After all the Spring cleaning it's a good thing too as they're not messing up the house! :)
Thursday, September 4, 2008
But in all honesty, I don't completely trust mince some days. Whereas I do know the gluten free sausages we buy are hunky dory. I must write about the brand next time we buy them (I threw the packaging away) but they are marketed as "Kids Sausages" in IGA Supermarkets, are made in Geelong and are Gluten Free.
So anyway, this is how I made the super simple sausage rolls.
I had to pre-heat the oven to 210 C for the pastry. So I figured while it was pre-heating it's little self I'd save energy and use it to do some work while it was getting itself all ready. So I popped the sausages in a casserole dish. Poured boiling water over them (enough to just cover), placed the lid on and sat them in the oven while I made the pastry. My reasoning behind this was after tummy bugs and with all the food issues we've had, the least I could do was make sure the meat was absolutely, positively cooked. Because it's hard to tell once something is encased in pastry.
While they were baking, I again made "The Maggie Beer GF Pastry" replacing butter with Nuttelex and chilled it for 30 minutes before assembly-time.
So basically, 45 minutes after popping the sausages in the oven, I took them out and drained them. I then rolled out the pastry between sheets of baking paper, cut it into sausage width lengths and rolled the sausages up. Placed them on a lightly oiled tray, brushed them with water and sprinkled sesame seeds on top.
I made two lots. One for our tummies and one for the freezer. With school holidays only a few weeks away, I want the freezer stocked with snacks!
Wednesday, September 3, 2008
Oops! I had visitors today and forgot all about dinner until it was nearly dinnertime! So a quick assessment of the pantry and fridge and I came up with this kid-friendly dish. Eggs poached in mashed potato nests served with a side of sweet potato chips for dipping!
Red Soldiers (sweet potato chips)
Preheat oven to 220 C.
Peel one large sweet potato. Cut into think chips/wedges. Lightly coat in olive oil, season with sea salt and ground pepper. Bake for 45 minutes (but shake the pan every 15 to make sure they cook evenly).
Nested Eggs (eggs poached in mashed potato)
Make up mashed potato as you normally would. One small potato to one egg is the best ratio.
Spoon mashed potato into baking receptacle. I used ramekins which each fit 2 potatoes worth of mash and two eggs. Muffin trays might work? Or one big baking dish would also be fine.
With a spoon, poke little wells in the mash. Crack eggs into a cup and pour into the holes. Bake for 20 minutes so the yolk is still runny.
Serve with soldiers and dip into runny egg!
I found this dish good because once everything is in the oven, you have time to set the table and so on. Pretty low maintenance dish.
Monday, September 1, 2008
I can see I am going to have a mountain of stuff to get rid of. But it feels so good being organised again!
Next I'll do something really weird like...recipe plan. LOL!
I have to say a BIG THANK YOU to Ms Skipper at Domestic Guru.
Being the type of person who has been distressed about an untidy house, her site has helped me break it all down into "bite-sized chunks" which makes housework so much less daunting.
So I'll recommence blogging ASAP with a tidy house!