Friday, September 12, 2014

Is it ok to kill my husband?

trigger warning: 
discussion of murder, murder of children, murder of a disabled woman, suicide, excuse of murder, sympathy for murderers 

Dear Journalists and Members of the Media,

We need to have a talk. I have some serious questions to ask you, and I'd like to know your honest answers. 

Once again this week, I'm seeing violent murder....  4 violent murders, actually- 3 children and their mother ....... reported as a tragedy and with sympathy for the murderer. He was a pillar of the community. He was a great guy. He was so patient. He was under stress. He must have snapped. He must have been suffering, after all, he committed suicide. 

His wife had a disability

Maybe that is why we are reading your sympathy for him.

So, here are my questions for you:

If I kill my husband, who has a disability, is that OK

If I kill my 3 kids, who have disabilities, will you feel sorry for me too

Now do you see how dangerous what you are doing is? 

Do you realise that while ever you continue to empathise with murderers you put lives at risk?

Will you stop? Or will you keep doing it because it sells papers and gets ratings? 

Saturday, August 23, 2014

Who are the REAL experts? ... more on privilege

Earlier this week I wrote about privilege. We all have some. Some of us have more than others. 

This week I had opportunity to try to use my privilege in an effort to help some friends of mine. I'll explain what happened. 

I sometimes write articles that get published by The Huffington Post.
Twice recently Autistic friends of mine have submitted to them, and not been published. Because I thought the words they had to offer were valuable I have done a bit of an experiment with HuffPo and submitted my own articles, that carried essentially the same message as my friends article did- including direct quotes from these friends, with links back to their blogs where the posts are published- and my articles have been published by HuffPo.
So- here is my question to The Huffington Post:
Why will you publish the message of acceptance of Autism, and the message of the need for advocacy to support Autistics, when it comes from a non-Autistic person..... but not when it comes from an Autistic person?
Sadly, I think I know the answer. It's because as a non-Autistic parent to Autistic children I am afforded privilege that Autistic parents are not. 

You see, Autistic people are very much caught in a catch 22. Society has been told, and believes, that all Autistic people are generally less capable than non-Autistic people. This means that if they say something about parenting it is not as valuable or significant as if a non-Autistic persons words.... even when they are talking about raising an Autistic child. Then, on the odd occasion that an Autistic parent says something and people think it's great, somehow the Autistic person is now seen as less Autistic.... or sometimes even confronted and accused of lying about begin Autistic (yes- this happens).... and their view point is again put back in the position of less valuable. 

Let's really have a think about the wisdom of listening to non-Autisitc people as our primary source of information about Autism. 

Above is an image that contains the title “Ask the REAL experts:” and has 4 pictures of female presenting faces(the one on the top left wearing a cute pink hat with ears), each with a speech bubble next to it. 
The first speech bubble says, “Would you get a tattoo from me? I mean, I know a lot about tattoos because I am married to a tattooist, and I even have a lot of tattoos. So, it makes perfect sense that you'd come to me to get a tattoo, even though I am neither licensed or experienced, right?” 
The second speech bubble says, “One of my besties has a pilot's license, so folks are going to let me fly them around in an airplane. Right?”. 
The third speech bubble says, “My husband is a nurse, so I can totally put in a catheter for you and administer your IV medications. OK?”. 
The last speech bubble says, “My boyfriend boxed in college, so if you need anybody punched out, I can tell you all about how to do it.”
Below the faces and speech bubbles to the left is the large word “No?” Followed by “Well, consider this: That’s pretty much what you're doing when you go to non-Autistic people to learn about Autism. And no, it won't be on your skin permanently, endanger your life or get you put in jail. But when you get the wrong messages and information and pass them on to your kids, you can most certainly damage them permanently.”
My thanks to Lei, Sparrow and Kassiane for their permission to use this image with their words and pictures. 

So, what do you think? Should HuffPo be favouring my voice on the topic of parenting Autistic children over the voices of Autistic people who have asked to have their work published by them? I don't. 

To be honest, I feel really conflicted by the fact that this happens. On one hand, I am glad they are happy to publish what I say when I do my best to let people know how much listening to Autistic people has helped me. On the other hand, it feels very, very wrong that the message that Autistic people have something to offer is only acceptable when it is filtered through a non-Autistic person. I am allowed, as a non-Autistic person to say "hey! I have something to offer here!".... why aren't they? 

After all, who are the real experts? 

Friday, August 15, 2014

Things I don't need to worry about: Let's talk about privilege

privilege |ˈprɪvɪlɪdʒ|nouna special right, advantage, or immunity granted or available only to aparticular person or group: education is a right, not a privilege | [ mass noun ] :he has been accustomed all his life to wealth and privilege.• something regarded as a special honour: I had the privilege of giving the Sir George Brown memorial lecture.• (also absolute privilege)(especially in a parliamentary context) the right to say or write something without the risk of incurring punishment or legal action for defamation. he called on MPs not to abuse their privilege. [ mass noun ]a breach of parliamentary privilege.• the right of a lawyer or official to refuse to divulge confidential information.• chiefly historical a grant to an individual, corporation, or place of special rights or immunities, especially in the form of a franchise or monopoly.verb [ with obj. ] formalgrant a privilege or privileges to: English inheritance law privileged the eldest son.• exempt (someone) from a liability or obligation to which others are subject:barristers are privileged fromarrest going to, coming from, and abiding in court.

Have you heard the phrase "check your privilege"? People use it when they want someone to think about their attitudes in terms of what they assume due to their circumstances that others can't assume because of theirs. 
Let's check my privilege.
I am fairly neurotypical. This means I do not have a diagnosis of Autism or Bipolar or Depression (currently) or any number of other things considered to be a divergence from expected neurology. This means that, unlike my husband, if I get angry about something and want to speak out about it people do not respond to me by saying "forget your meds today, did you?". It also means people do not question my ability to parent my own children based on the assumption that neurodivergence makes a person less competent to be an adult. 
I am white. This means that, for the most part, I do not have to worry when I step out that someone will make a racial slur at me based on my appearance. It means, in this country, I am not likely to be assumed to be in the wrong because of my skin colour. It means I do not have to worry my children will be targeted because of their skin colour. 
I am well educated. This means I have a choice about what kind of jobs I can do and where I work. It means it is easier for me to do more study if I want to in order to improve my work prospects. It means I am able to support my children if they need help with their learning, and I can assist them in making wise decisions about their education. 
I am articulate. This means I can hold my own in a discussion in a meeting at my kids schools and I do not have to worry that the teachers I am talking to will assume that I am part of my childs "problem". It means I can speak my opinion confidently without have to worry people will police my grammar.
I am (reasonably) slim. This means I do not have to expect jokes to be made about my size, assumptions to be made about how lazy I am, and doctors to tell me that all my health problems are related to my weight and if I were just to eat less and exercise more everything would take care of itself. It means I can walk into any clothing shop and find clothes in my size that I like and am comfortable wearing. 
I was born in a country where good food, accommodation, health care and education are readily available, and I am of a socio-economic standing that I can access all those things freely. I am by no means wealthy by our societies standards, but I have everything I need.This means I do not have to worry where my next meal comes from, where I will sleep each night, what I will do if I become ill, and more importantly I do not need to worry about any of those things for my children. 
All the things I have just listed that I don't need to worry about are actually covered by the Universal Declaration of Human Rights. It is a sad fact that not everyone has the same privileges/rights afforded to them that I do. It is important to recognise this for a number of reasons, the most basic of these is for peoples wellbeing and safety. Another is because it should be a consideration when we speak to each other. 
We need to be aware of where we have privilege that others don't. 
For example, if I am talking to someone who struggles with anxiety I do not say, "just ignore it and it will pass" because they can't do that. I might be able to ignore my anxieties, but that doesn't mean everyone can, and I need to be careful not to shame them for their current inability to do so. 
For example, if someone is expressing frustration over not being able to find work, I do not say "just apply for every job in the paper" because that fails to acknowledge that there may be reasons they cannot just apply for a job that might be 50kms from their home and to do so is insensitive when I am not in the position of not having to worry how to pay the bills and feed my kids. 
For example, if someone complains that their rented home is freezing and mouldy, I don't say "so move to a new place" because that assumes they can afford to make a move when in fact they can't. 
Of course, there are areas in which other people have privilege where I do not. One example is that most men will never be told they should wear a face full of make up to make a good impression, or that they need to wear 'modest' clothes to avoid being raped. 
Do you see what I mean? 
We need to be aware of our privilege. We need to be respectful of other peoples situations and refrain from applying the same reasoning over other peoples lives and situations that we apply to our own. We need to show empathy and compassion for everyone. We need to listen to each others stories and value each others perspectives. 

Image is an orange rectangle under the words "Have you checked your privilege lately?"

Sunday, May 11, 2014

40 things I am thankful for on my 40th birthday

Every few years my birthday falls on Mothers Day. This year happens to be Mothers Day and my 40th birthday.  

I am taking time today to "count my blessings". 
Here is my list of 40 things I am thankful for on my 40th birthday. 
Yes, I know it looks like a list of 10 things, but- trust me- there are 40 things in there (there may be more....I kind of got muddled counting)!! 

1. I am thankful for my mother and father, without whom I would not be here! My parents made sure I had everything I needed as I grew up, and are to this day always there when I need support. I don't call on them as often as I used to, but I know they would be here in an instant should I say I needed them. 

2. I am thankful for my Wonderful Husband, without whom I would not be mother to my children. My hubby is an amazing guy.... hard working, persistent and self-sacrificing. He is my love and my best friend and I would not want to be without him. 

3. I am thankful for my children. 6 of the best things I ever did. Each an individual, each with their own strengths and challenges, each a privilege to have in my life.

4. I am thankful for my siblings. 3 people who have known me their whole lives, who still like to spend time with me occasionally! I miss the times we all lived close together, but I know we are all in the right places, living our lives well. I am thankful for their partners and children.... my extended family, and people my kids would be happy to turn to in the event I couldn't be here for them. 

5. I am grateful I had the opportunity to grow up in a culture different than my birth culture. The experiences of my high school years formed the way I view the world, and helped me to become understanding of the need for compassion toward those who are from different backgrounds than our own. 

6. I am thankful for old friends. These are people who I have known since high school that I still love to chat with. They understand things about the way I think because of experiences we shared that no one else gets. They are in the stories I tell my kids about "when I was growing up", and are in the  memories of simpler times I cherish. Because of them I have little to draw on when my teenaged kids tell me of difficult experiences I am led to believe are "typical teenage relationships". Because of them I grew up feeling valuable and understood. I will be forever grateful. 
Bel bilong mi i amamas tru long yupela wantok bilong mi.

7. I am thankful for the friends of my adulthood. These are the friends I made as a young parent. We learned some tough lessons together. We supported each other through the days that followed sleepless nights, learning how to navigate parentings tough decisions, and through unexpected diagnoses. We've done this in person when we lived near, and continue to do it over the phone now that we live further apart. Here I give a special mention to my kids godmother who countless times has leant her listening ear to allow me to process my thoughts and her gentle wisdom to support me in tough decisions, and the kids godfather who has welcomed us his into family's home and lives unreservedly.  

8. I am thankful for friends in my local community. These are the people who I see daily, the parents of my kids best friends,  the people who support me and my family and who I hope I support in some way too. They put up with my bad mood days when I have Uni work due, they are on hand to pick up my kids from school if I'm running late from an appointment, they invite me to do stuff with them when they know I likely won't be able to- just so I know I am thought of and welcome, and they check up on me if I go "missing" when I am super busy.   

9. I am thankful for online friends in the Autism community. Many of these people are Autistic, and amazing advocates for themselves and for Autistic children. Some of them are parents of Autistic children who love and accept their kids exactly as they are. I am grateful that these people speak up about things that need changing in our world, sometimes at great personal cost. I am grateful that they give of their own time to answer my questions. These people have helped me challenge the generally accepted discourse around Autism, and as a result I am changed and my parenting is changed, for the better. 

10. I am thankful for the privilege of living in a well resourced place in the world, where I have access to good food, comfortable housing, running water, electricity, warm clothes, technology, choices, education that helps me know which choices are wise, opportunities to better myself, the freedom to express my opinion without fear for my life, and for people in my life who are not afraid to speak up and help me to appreciate all of this. I am also thankful for those who are helping me learn how to use my privilege in a way that benefits others. 

Friday, April 4, 2014

Autism Awareness, Light it up blue, and other problems

I know I am overdue an end of March post, but I've been so busy and I want to catch you all up on what's happening for "Autism Awareness Month" in my neck of the woods. 

The most exciting news is that The Huffington Post republished an article I wrote on my Amazing Adventures blog. The post is called "I will not light it up blue". I'll let you go read it to find out why. You can read it on the Amazing adventures blog or on The Huffington Post website, or on the Aussie Mum Network website (because they are running a series I edited during April too, so if you go there click around a bit to see the other posts).

We've been having some fun on the Amazing Adventures Facebook page too, making and posting memes like these.....

The 5 images above are all of smiling Autistic people next to a caption that says 
"I need your ACCEPTANCE much more than I need "Autism Awareness"

 I've said it before, but April is always a good time to say it again. Running campaigns for "awareness" does little for Autistic people.  Especially when the groups running the campaigns have the motive of raising money so they can pay their own salaries run programs that have been determined by non- Autistic people as helpful for Autistic people. 

Rather than rewriting my thought on this I'm going to jump on the republishing bandwagon and share with you a post I wrote for Amazing Adventures. You can find the original here.

"World Autism Awareness Day has been held every year since 9 September 1989. It was designated by the United Nations General Assembly resolution "62/139. World Autism Awareness Day," adopted on 18 December 2007, proposed by Qatar, and supported by all member states.[1][2][3][4] The resolution had four main components:
  • the establishment of 2 April as WAAD
  • participation of UN organizations, member states, NGOs and all private & public organizations in WAAD
  • raise awareness of autism on all levels in society
  • to ask the UN Secretary-General to deliver this message to member states and all other UN organs.[3]

I suppose in 1989 a World Autism Awareness Day may have been useful in some ways. After all, at that time the diagnosis of Autism had only been available for about 40 years, and Autism was not something most people knew about. In fact, in the 1840's Donald Gray Triplett, now in his early 80's was the first person ever diagnosed Autistic. Although I can't speak on his behalf, I'm pretty sure that World Autism Awareness makes no difference to Donald in his every day life.  

I can, however, speak on the behalf of my children. And I can tell you with all certainty that World Autism Awareness Day does not stop students at my sons school calling him stupid when he has to seek clarification on work tasks because he didn't understand the way the teacher communicated. 

World Autism Awareness Day does nothing to stop students at my sons school calling him rude when he tries to assertively explain his viewpoint in his someone monotone voice. 

World Autism Awareness Day does not prevent people from staring at my daughter if she has a sensory overload triggered meltdown in a public place and making snide comments about her needing a good spanking.

World Autism Awareness Day doesn't stop a mother in my community referring to my children as c*#^s who have behaviour problems because of my parenting and insisting they can't be Autistic. 

Those kind of situations can not be helped by awareness. 

I would actually argue that awareness can in some instances can hurt my kids. Like when students at my sons school say to each other- "don't do that, it makes you look Autisitc".  I'm not going to break down for you how many ways saying something like that is wrong (mostly because, to be completely honest, I can't stand the thought that you might have been reading my blog for a while and still not know why that statement is so offensive). But I will say that hearing his neurology referred to as an insult breaks my son just a little bit more each time it happens. 

There are others who agree with me. They are Autistic adults. When I asked them if World Autism Awareness Day helps them they said:

Kassiane- "yeah it helps me by making the world more aware that I don't exist, but would if I was a 6 year old white boy. And then when it finds out I do exist it reacts in a way that's a really awful amalgamation of insisting on denying my existence and acting on every awful hyperbolic stereotype, thus resulting in me being invisible except when people are wiping their asses with me.

Oh wait that's the opposite of helping."

Lei- "Awareness does not help me. I am aware of a great many things, but that does not mean I understand or accept them. Almost everyone I've ever met is "aware" of autism. That doesn't mean they accept me, or think it's okay to be like me. It just means they recognize my existence. That just seems weird to have a day set aside to say "Yay! You exist" and nothing else. I don't think it helps anyone to be tolerated once a year. I do plan on "celebrating" that day by reframing it as Acceptance Day and using it to open the library and hopefully, to change some minds about autism, acceptance and the value of human diversity."

Accpetance on the other hand......  true acceptance of Neurodiverstiy.....  true acceptance of the idea that everyone is valuable just as they are and has something of worth to offer even if they are part of a minority group.....  that would help my kids and my friends. 

Acceptance of difference would stop students making value judgements on people needing communication clarified. 

Accpetance would make it inappropriate to make jokes and form insults based on someones perceived differences. 

Acceptance of things we see but don't always understand would mean I and my children would not be subject to criticism and hurtful comments when things get hard for us in public. 

Acceptance is the only way my kids are going to grow up and not have to face the societally induced struggles my Autistic friends have faced in their life times. 

And let's face it, no one wants to know their kids are going to grow up having to fight every day to be deemed worthy by their peers just because they process information differently and need more support than most people do. 

No one wants to know their kids are going to be the butt of jokes and snide remarks because their voice doesn't have the same range of intonation as other people. 

No one wants to know their kids are going to grow up knowing that one day a year they are celebrated but the rest of the year they are going to have to "tough it out", "suck it up" and "just do what you can not to draw attention to yourself and you'll do fine". 

No one wants that for their children. 

So World Autism Awareness Day does not help my children. Or my friends. 

I am asking you to please, please, please, help me spread the word that what Autistic people need is ACCEPTANCE not awareness.  

For my kids. Please.

Saturday, March 29, 2014

The cocoa cost of parenting

I made a conscious decision a few years back to do all I could to encourage autonomy in my children, even when it was inconvenient for me. 

This means my house is often messy as they learn about caring for their own things by experiencing the consequences of not caring for their things. My planned schedule is often discarded as they learn about being organised and taking steps to be ready on time. My kitchen usually looks like a disaster zone because they are still perfecting the art of preparing their own food and cleaning up after themselves. It would be a lot easier for me to just come in and clean up after them, but I resist because I know the value of them learning these things for themselves. 

This morning I paid a price for this decision. A 1kg box of (peanut and sesame free) cocoa powder was accidentally exploded in my kitchen.  The person who had the accident was being a bit silly at the time. It happened just as everyone was coming into the kitchen to get breakfast. I am unwell and had a poor nights sleep, and have a heap of things to get through today. 

I'll admit it- I was livid.

Fortunately, and this doesn't always happen, I remained calm. I enlisted the help of the older kids to keep small people out of the kitchen and to get the now cocoa covered perpetrator cleaned up while I set to work liberating the pantry and surrounds from its thick brown covering before it was spread through the house as people moved in and out of the kitchen. The stuff was everywhere. I had to move each individual item on the bottom 4 pantry shelves and clean it. I had to wash each shelf, the pantry doors, the floor, the walls. It took me an hour. 

When I was finished I was approached by a very embarrassed looking girl, who said, "Mummy I really wish that never happened and I'm very sorry for all of it".

I have never been so glad I had kept my s*@t together. She was feeling terrible. She did not need me to tell her she had made a mistake. She did not need me to condemn her actions. She was doing a fine job of that all by herself. 

We had a hug. I told her it was OK, I knew it had been an accident. 

I do not always get this right. I know I have hurt my kids in the past, and I've no doubt I will do it again at some point. Parenting is a difficult balance of meeting the kids needs and/or your own. However, this morning I was reminded the importance of trying to do the best for them all the time. 

Our kids do not need our judgement or our anger when they stuff up. They need our unconditional love and support as they navigate the difficult task of growing up. 

Her mistake cost me some cocoa and an hour of my time. 

A mistake in reaction from me could have cost her a damaged self esteem, her trust of me as a safe person in her world, and the chance to learn a positive lesson about what sort of parent she wants to be. 

Some cocoa and cleaning time is a small price to pay. 

Friday, March 14, 2014

We are perfection

There is a pile of dirty dishes in the sink. 
We are learning to take time out when we need to.

There is a mountain of dirty clothes on the laundry floor. 
We are learning it’s alright to leave the mess and come back to it.

There is unfinished homework on the kitchen table. 
We are learning that sometimes others expectations can wait.

There is only a container of leftovers heating in the microwave for dinner. 
We are learning to look after ourselves even when we are tired.

We are in the lounge room, dancing wildly loudly giddily, singing along even when we don’t know the words. 
We are enjoying each others company. Rejoicing in life. 
We are magnificence. 
We are perfection. 

There is an argument over who will play with the horse. 
We are learning to advocate for ourselves and to negotiate with others. 

There is a mutiny over who is doing which chore tonight. 
We are learning how to cooperate and about the consequences of not working as a team.

There is a mess of toys that would rival a bomb explosion in the bedroom. 
We are learning about caring for our own possessions. 

There is paint on the table and texta on the walls. 
We are learning to enjoy the process rather than focussing on the ends.

We are playing, creating, maturing. 
We are becoming. We are changing. 
We are exquisite just as we are and will be sublime as we grow. 
We are perfection. 

There are file drawers full of psychologists reports. 
We are learning the best ways to support the lives entrusted to us. 

There are therapy appointments we arrive late to and meetings we cry in. 
We are learning how to be our best no matter what.

There are endless forms and funding applications to be completed then have rejected. There are fights to fight. There are times we give up because it is not worth it. 
We are learning to navigate a system not built for us and to advocate for what we need. 

There are meltdowns, hallucinations, missed medications, days when we just don’t do our best. 
We are learning to pick ourselves up and try again…. and again……  and again……. and as many times as it takes because that is worth it. ABSOLUTELY WORTH IT.

We are Autistic. We are Bipolar. 
We are sometimes depressed. Sometimes anxious. Sometimes frightened. 
We are sometimes angry. Sometimes overwhelmed and completely unable to speak. 
We are what many would call imperfection. 

There is nothing wrong with us- we just aren’t what most expect. 
There is nothing broken in us- we are just in the minority.
There is nothing to be fixed in us- we are just works in progress. 
There is nothing particularly special about us- we are just like you in many ways. 

We are neurodiversity represented in one household. 
We are surprising. We are one in 100, or one in a million, or just us. We are humanity.
We are the ultimate, the greatest thing since sliced bread, the bee’s knees. 
We are spectacular! 

We are perfection. 

picture by MissG, used with her permission