Tuesday, April 30, 2013

Images of Acceptance

This is my last 
#AutismAcceptance post for 2013. 
I took a photo of my MissG each day this month, 
to show what her life looks like when she is accepted just how she is. 
We do our best to adjust the environment around her and 
provide appropriate supports  to meet her needs. 
We try to avoid putting her in a position where she must 
change herself to blend in and appear like everyone else. 
To us, this is acceptance. 
These photos show what accepting her looks like at our house.

1. MissG designed snow men toys and gave me the instructions to construct them.
2. Playing the drum she made
3. In her favourite pyjamas- she wore them for 3 days straight
4. Playing with the interactive globe
5. Tracing my shoes with circular counters
6. Wearing her choice of costume for the easter Hat Parade
7. Sitting on a piece of newspaper in front of the fire eating a sandwich wearing t-shirt and underpants 
8. In the cubby house she designed and helped build
9. Bouncing and playing on the Wii
10. With face painted as a dragon
11. Exploring electricity
12. Snuggled on her bed in a sleeping bag for some sensory deprivation time
13. Hanging out with her godmother
14. With her friend from preschool "E is my best friend"
15. Having a go at the trumpet with the help of a friend
16. After many years of fearing the noise of the vacuum she suddenly decided to clean the floor for me!
17. Being a "hero warrior" on her rocking horse
18. Hand washing is important
19. Watching her favourite show with Daddy
20. Peering into the fish tank
21. Making music on the wall
22. Playing with K
23. Blowing bubbles in milk
24. Another detailed drawing.... MissG does numerous pictures every day
25. Her favourite food- "bone chicken" (chicken drumstick)
26. "Kiss?".... countless times a day
27. Helping wash the car is a great excuse for sensory input
28. Another sensory game- squishy "fairy eggs"- wearing her princess cape
29. "Squeezey hugs" 
30. Bath toys line up

Tuesday, April 23, 2013

An answer to a letter

Do you remember when I wrote a letter to NSW Premier Barry O'Farrell? It was almost a year ago. 

Well, today I received a reply! 

I guess my email address was filed away in the PR office under "reply to with bulk email when we need to impress people who complained about the massive education budget cuts and/or removal of Disability Support Funding".

In case you can't read the text in the photo image of the email, it says this-

Historic Achievement for NSW Students, Teachers and Parents

Today the Prime Minister and I announced NSW would be the first Australian State to agree to the “Gonski” national education reforms.  

This is great news for students, teachers and parents. It will mean more resources and a fairer system – and assist our aim of higher standards and a better education for our children.

The agreement will deliver an additional $5 billion for NSW schools as well as continue the NSW Government’s education reforms, including improving literacy and numeracy, raising teaching quality and empowering principals and school communities to make local decisions.  

I am proud of this historic reform which could not have been achieved without your advocacy. I congratulate you for your efforts.

Yours sincerely

Barry O'Farrell MP

Isn't that nice? 

Except for a few things.....

Last year the state government removed $1.7 billion from the general NSW education budget.

The amount the NSW government is contributing to the Gonski reforms is... (wait for it)... $1.7 billion.

The amount in the letter the letter I received of $5 billion is misleading. He wants us to think that is coming from the NSW government, but in reality that is the amount coming from the federal government.

Although the fact that Gonski is going ahead in NSW is encouraging in that there is allowance for extra funding to be given to schools that have students with additional needs attending, there is no real sign of the disability support funding farce being resolved.

And how about this little gem.... Mr O'Farrell is going to pay for the states contribution by (among other things) cutting funding to TAFE (which is an educational institution) again! I can just imagine the discussion.....  "I know, let's fund the increase to education spending with cuts to the education budget". 

Call me a cynic if you will, but Mr O'Farrells statement that the NSW government will "focus on what's most important in education, which is giving our young people the best possible start and opportunities in life" seems a bit hollow. And his statement that "the state had always supported the Gonski principles and had been preparing the way for the funding overhaul" does appear to be true, however maybe not in the way he would prefer voters to believe.

What does "Awareness" get us?

***I live in Australia. There are things that are common knowledge in The USA, where some of my readers, and a lot of my online friends live, that are little known here, even in the Autism Community. This post may contain information that a lot of my Northern Hemishpere readers already know, or even know more about than I do. If I have anything wrong, please let me know! I am trying to help my Australian friends discover some of the issues that exist so we can try to learn from others experiences and guard against replicating undesirable situations.

Since 2007, April 7 has been the United Nations sanctioned World Autism Awareness Day. This year, UN Secretary General Ban Ki-moon said, "This international attention is essential to address stigma, lack of awareness and inadequate support structures. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential. "

There are many large organisations that have joined the bandwagon, so to speak, and now acknowledge and even celebrate Autism Awareness Day. Some of them now run Autism Awareness Month activities, and use the time as their major fundraising event for the year. But there is a problem. You might wonder what on earth can be wrong with raising awareness about Autism and raising money to support families affected by it. On face value, the answer would have to be "nothing". But unfortunately, not everything is what is seems on the surface. To show you what I mean, we need to talk about Autism Speaks. Autism Speaks is a large "not for profit" organisation in the U.S. that instigated the "Light it up blue" campaign that many people associate with World Autism Awareness Day. In fact- the campaign has been so successful, that most people don't realise WAAD is a UN initiative. A.S uses "light it up blue" as a major fundraiser. I'll start with a quote from Nick Walker, an Autistic adult,

"Don't "light it up blue" in April!

"Light It Up Blue" is an "awareness" campaign by Autism Speaks, an anti-autistic hate group dedicated to preventing the existence of people like me.

If you take part in the "Light It Up Blue" campaign by displaying blue lights in April, or promoting the campaign with "Light It Up Blue" images and profile pics on Facebook, you're not doing anything to help or support Autistic people. Instead, you're showing support for a corrupt and bigoted organization that has a history of maligning us, silencing us, excluding us, and harming us. An organization that openly declares that its goal is to "prevent" us."

Huh? What is he talking about? A while back, I did some reading to find out what the fuss is in the Autistic community. I'm not going to spend a lot of time explaining all the reasons why I would never support AS. If you want to learn more google the phrase "what is wrong with Autism Speaks?" and see what comes up. Here are a couple of things I found when I did that search-

I found this flyer here on the Autistic Self Advocacy Network website. It's hard to read in this image, so here is the pie graph summary of who AS spends their money. .......

4% of their funds are spent on Family Services- that is the part that supports Autistic people.

44% is spent on research.... that is a worry for an organisation that openly says they are " dedicated to funding research into the causes, prevention, treatments and a cure for autism" because when Autism is a part of who you are and how your brain works, the idea of the organisation claiming to be there to support you actually wanting to prevent or cure you is pretty scary really!

Here is another link for those of you who have some time on your hands and want to do some more reading on this... https://en.wikipedia.org/wiki/Talk:Autism_Speaks/Controversy_links. There are some fantastic articles linked here that explain the controversy better than I could ever hope to.

If you would like to know what many Autistic Adults think of the organisation that claims to speak for them and claims to be there for them, read this by Alyssa of Yes, That Too.

Lastly, on Autism Speaks, if you want a really good, but short summary, The Caffeinated Autistic can help! Click here.

Now, in Australia we don't have Autism Speaks (although they are conducting research here, and did happily back up and promote the Australian organisation Autism Awareness' efforts to "Light it up blue" this year), but we do have governments that are taking away disability support funding from schools, and we suffer our fair share of what I now think of as "tragedy talk" (examples?... Autism is a Tragedy.... 1 in 88 *suffer* from Autism..... Autism is an epidemic.... etc.) Daily newspapers report sensationalist stories, fuelled by newly announced statistics, and media statements by organisations like AS. On April 2 major newspapers ran stories written by parents of "children with Autism" about how hard life is living with Autism and how little support there is for Autistic people in our country. Some of these stories I found depressing as thy just talked about the hard stuff. A couple of them were good, and it was clear the parents were attempting to put out a positive message.

But here is the problem with "Awareness": the media wants to tell the story so they can sell the story. They make people aware that Autism is hard by calling it a Tragedy, a Burden, a Struggle, and label it Heartbreaking. People will read that. The result of this is when I tell someone who doesn't actually know me or my family that 2 of my kids are Autistic they say [pause to put on compassionate face] "oh, I'm sorry. That must be hard" (or something similar). Which, although the person is responding in a way they feel is appropriate due to the information they have, is annoying because in our house Autism is not something to be apologised about.

More important to acknowledge than my irritation as a parent when people apologise to me that my kids are Autistic is this- When Autism is presented as a burden, a problem, and a tragedy the result is that Autistic people suffer.

Here is an example. On World Autism Awareness Day this year, ironically, an Autistic lady named Amanda was in hospital. She was being actively encouraged to consider NOT having a lifesaving medical procedure. You see Amanda is non-verbal and requires support to manage some of the tasks she needs to do daily so it was assumed that her life must be miserable and she would be better of considering allowing her life to end. Yes... really! Read here for more information about this situation. THAT is what "Autism Awareness" gets us.

This is not an isolated incident, either. Last year an Autistic man called Paul was denied the right to go on a heart transplant waiting list because he is Autistic. You can read his story here. THAT is what "Autism Awareness" gets us.

But that’s America you say. That wouldn’t happen here in Australia.

Really? In 2012 an English family was denied entry into Australia to take a job that had been offered because their daughter is Autistic which you can read about here. THAT is what "Autism Awareness" gets us.

In 2012 the NSW State Government removed Disability Support Funding from public schools resulting in most Autistic children in mainstream classes losing the support that was helping them succeed at school. You can read about these changes here. This change has impacted my family with both of my Autistic children now unable to receive funding toward providing them the support they found so helpful. THAT is what "Autism Awareness" gets us.

As Genral Ban Ki-moon says, "Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential. "

Here is another quote for you: ".......autism isn’t just a hole in the floor that people are tripping over, autism is a part of who we are!" That Autistic that Newtown Forgot

Autism is a neurology. It is not an illness. It is not a disorder. It is a part of who a person is. You cannot cure Autism. You can use genocide against it. You can eradicate it. But you can't cure it.

It is a horrifying thought to me that one of my Autistic children could be denied medical care that would be standard procedure for a person without a disability! It should be a horrifying thought to all of us that it could happen to anyone!

Autistic people do not need more awareness. They need people to accept them as they are, as valuable people with the same rights as everyone else.

We need to move towards acceptance of everyone, regardless of their neurology, so that all people receive the support, validation and recognition they need and deserve.

You might say that I am just arguing semantics here. I would reply that I believe there is a very important difference between awareness and acceptance because of the behaviour that results from each. Awareness results in all sorts of knowledge, whether it be fact or fiction, that doesn't actually help Autistic people. Awareness is a good start, but not a solution.

image from ASAN

Wednesday, April 17, 2013

Accepting "obsessions" ... or.... FISH, a guest post by Master L

One of the things accepting Autism means in our house is encouraging special interests. The best way to tell you about this is to introduce you to MasterL. So, I asked him to tell you all about his current hobby. What follows is all from him.

At the moment I am really interested in keeping tropical fish aquariums. I have a 4ft tank. It has a large heater in it and a four chamber filter.I have a levels testing kit that I use for testing the pH, ammonia, nitrite and nitrate levels. That is important so that nothing gets too high or low and fish die. Tropical fish need particular environments to live in. 

I also have a small tank. In that tank I have a smaller heater and a built in one chamber filter. I use the same testing kit for that tank. 

I feed the fish basic tropical fish flakes. I have sinking pellets and bloodworms to feed once a week for the fish that won't eat flakes. Some fish that live in more shallow areas like swamps and small clear ponds tend to feed from the surface and they eat the flakes. The ones that live in more fresh rock pool and river like areas tend to eat from the bottom of the tank, so I feed them blood worms and sinking pellets. 

In the little tank I keep a Siamese Fighting fish. He is in there because he had an injury with the filter intake in the big tank and his back fins got damaged. The Siamese Fighter is also known as the Betta fish, they are very territorial towards their own kind and it is best to only keep one per tank. They originate from the shallow waters of Thailand.
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The large tank is not so much used as emergency and is full of schooling fish such as the next topic fish, the Silver Shark. We have two silver sharks, despite their name, Silver Sharks are actually Minnows. They can grow to about 50 cms, but that takes a long time.
photo 1.JPG

I have 2 Gouramis in the large tank. One is a Flame Gourami. The other is a Silver Gourami which is funny because it actually looks quite blue. My favourite thing about Gouramis is how uniquely they move and use their weird antennae when they move. 

photo 3.JPG
I have 5 fish called Widows. They are silver and black, like the Silver Sharks but they are quite a different shape. On the bottom of them they seem to have a fan fin that flutters a little. They school with each other, and sometimes with the Serpaes. I have 5 Serpaes. They are similar to the Widows, but are kind of a peach colour. 

photo 2.JPG
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I have 3 Albino Corys. They are a small catfish. They grow to about 5 centimetres. They are some of the fish that like to feed off the bottom. They are often found in streams and rivers in South America. There is also a Sucking Catfish. I used to have 4 but 3 died.

photo 5.JPG
My favourite fish (which I saved for last) is my Black Ghost Knife Fish. The can grow up to 30cms long. They are a relative of the Electric Eel. Their electric abilities are very weak and mainly used to detect food. Unlike most eels he has a wavy long ventral fin (along his underside) rather than a long dorsal fin. Although he moves quite smoothly, we have researched and found out he can move quite quickly if he wants to. Some people have trained their Knife Fish to feed from their hands, and I'd like to do that. He is quite shy and he spends a lot of time hiding in the plants and secret places. When he comes out he is really interesting to watch because of his fin and because he can move any way he wants- up down forwards, backwards.... he's the most amazing fish in my tank. He is not incredibly easy to take care of, but he's not too hard either, so I'd recommend him for beginners as long as they are willing to try.     

It can be really hard work establishing a new tank. I have come across many problems keeping the chemical levels right. It has been hard to achieve what I have. It is worth it though because when you get it right having a fish tank is really enjoyable. 

Tuesday, April 2, 2013

Grieving Autism Accepting Autism

I was asked recently if I am worried BabyR will be Autistic. The question stumped me for a minute. I felt like I was expected to say yes. I wanted to say no. In reality my answer would have to be "it depends".

When MissG was diagnosed I grieved. I sought a diagnosis for MissG because of problems she was having. Problems with communicating and in social situations. Problems due to sensory overload. Problems caused by my expectations of how she should behave.

The reality is my grief was based on my own false expectations. On what I thought society wanted from me and my child. On what I thought I was losing, based on what media and health professionals told me about Autism.

But I now realise that I didn't know anything about Autism. About its creativity. Its persistence. Its resilience. Its beauty.

I am not worried that my child may never speak out loud. I am not worried that he might have some challenging behaviours. I am not worried that he may have difficulty processing sensory information. We have 2 Autistic children already and we know how to support them. What we don't know yet, we will learn if and when we need to. The fact is that parenting any child, Autistic or not, presents its own set of challenges and requires learning new skills and ways of thinking. I am not worried about facing those challenges.

I am only worried that if he is Autistic he will face bullying, discrimination and stigma.... that people will not accept him for who he is.  That he could grow up knowing that in some peoples eyes he will always be less.... broken.... inferior.

But not to me. To me he will always be just fine as he is. His neurology does not make any difference to me. I love him. I will not be disappointed if he is Autistic. Sure, it would mean another intense parenting journey. Sure, it would mean more work finding the right supports for him. Sure, it would mean more learning. But why would that be a problem? He is my son. I would do anything for him. Just as I would for any of my children. Just as you would for yours.

I am not the only parent of Autistic children who feels this way.

"We cannot afford for the focus of Autism be about parental grief.   Our anger and our sadness and our grief need to be directed at the targets which are worthy of it.  Those targets should be the ways that Autistic people are disabled by their environments.  And we need to attack those targets with ferocity.  To disable the environments which keep Autistic people from thriving."          

"When I try to imagine how my child feels about life, I take my childhood and try to imagine my life minus those experiences. But that's a fallacy. Anytime I try to subtract my experiences, I will feel a sense of loss. That same sadness happens when I imagine what I think is a "normal" childhood, an ideal childhood, that comes with a list of all the experiences a child needs for a great childhood. Karate, Valentines, kindergarten, music lessons, ballet, team sports, schoolmates, formal dances, first car, spring break, college visits. Any missed experience means that I have to cross that item off his list. A missed experience means a less-than- ideal childhood. Always. For any child. It's a flawed paradigm.

This paradigm is the same one that causes us pain when we think certain children with certain qualities are "Normal" and any difference is "Not Normal."  It can only set us and an entire group of children up for isolation.

Children with a disability do not have a life minus. They have a life period. It's their life. It's not some other child's life, the parent's life, or their peers' life. It's their life.

A complete childhood has nothing to do with specific experiences. A complete childhood does have certain qualities: connectedness, optimism, playfulness, a passion for things that interest them, a feeling of proficiency at things they want to do, and a feeling of being loved wholeheartedly for who they are right now.  That list is the one that matters."  

Autistic adults have spoken out about grieving Autism too.

"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."
from 'Don't Mourn for Us' an article by Jim Sinclair 

Look at this picture. How could anyone honestly ask me if I am worried this baby will be Autistic like his older brother? Look at them! How could I be worried when my Autistic son is a strong, intelligent, persistent, brave, tenacious, caring, funny, generous and thoughtful young man who has big dreams and expectations for his life?
Why would I worry about having 2 sons like that?

Monday, April 1, 2013

This is Autism Acceptance

You might not have realised it if I hadn't pointed it out, but these photos are of Autism Acceptance.

Acceptance- the process or fact of being received as adequate, valid, or suitable

My MissG started Kindergarten this year. We did a lot of preparation for this, because MissG is Autistic and has Sensory Processing Disorder. We worked with the school to help MissG get used to the routines of the school, gave her practice being in the classroom, and moving around the school in a group, playing in the playground with lots of other kids darting around..... things like that. We focussed on her own safety by teaching her a procedure she could use when she is feeling stressed or experiencing sensory overload so she could go to a "hiding place" where she felt safe and could wind down a bit. We made sure she knew the ladies who work in the office because they are the ones who look after kids who need first aid. We made sure she was totally comfortable with The Principal because he would be the person who would intervene in an emergency. We made sure she knew who her classroom teacher would be and got to know her, so there would be no anxiety about who she would be with. [search "transition to school" using the search function at the top right of the blog if you want to read about the preparation we did]

We did all this with the willing help of the school, who showed us by their actions that they accepted MissG just as she is and are happy to welcome her into their school and do whatever she needs them to do to make school work for her.

And the school has continued to show that they accept MissG and do not expect her to change to suit them. I know this because of the conversations I have with her Lovely Teacher when we check in with each other to make sure everything is going well. I know that when MissG is struggling her Lovely Teacher makes sure she has extra time to process things, and that she is teaching the other kids in the class to do the same. I know that MissG's Lovely Teacher makes an effort to give MissG plenty of warning for transitions and when the usual routine has to be changed. MissG has her own special drawer in the classroom where she keeps some fidget toys and comfort items she can go to if she needs to do something to calm herself.

MissG's Lovely Teacher, The Principal, the Office Ladies and all the other staff in the school value my daughters uniqueness. They let her be who she is. They encourage her. They are proud of her achievements. The see her as adequate. They *accept* her.

I know this because of what happened at the Easter Parade. I posted the above photos so you can see it too.

That is MissG. Dancing. With a partner. In the middle of a group of about 80 children. To loud music. Without her ear defenders on. With a huge smile on her face.

See her? My Autistic daughter? Dancing! With a partner! In the middle of a group of about 80 children! To loud music! Without her ear defenders on! With a huge smile on her face!!

The same girl who 12 months ago could not go shopping with me without having to run away and hide to get away from the overwhelming sensory input. I stood and watched her in that huge group of kids, enjoying herself. Feeling safe. Being confident. And I cried. Happy tears.

I know that the school staff accept my MissG just the way she is because I stood next to one of the Office Ladies during the parade and she said she had been looking for MissG and was so happy to see her enjoying herself even in the middle of the bustle and the noise. I know that her Lovely Teacher values MissG just how she is because she was almost as teary as I was about how well MissG did during the parade. I know that the community we live in accepts my MissG just the way she is because a few people saw me with tears in my eyes and when I told them what they were for they cried happy tears too. They put their arms around this Autism mum and they shared my joy.

My daughter has found a place where she feels safe enough to just be herself and dance.

This is Autism Acceptance.