This is why I advocate

This. This is why I advocate. This is why I go on and on and on about the right supports. This is why I get all worked up about accepting people who are different than us. 

click here to watch the video

My kids have another difference than these kids, but they live in the same society- one that holds such strong prejudices that these kids see themselves as different and therefore less and bad and ugly simply because that is what society tells them. This is horrifying. 

This is why I advocate.  Because when I fight for "disability rights" I am really fighting for human rights. Because when I stand up for justice for my kids I am also working towards making a change that will support all kids who are treated unjustly simply for not fitting the "norm". 

This is why I advocate. This is why I will never stop.




*this blog entry is a copy of one I published originally at different kinds of normal

Exploring a train of thought- The problem isn't Autism?

I haven't done this before, but I am going to share with you all an unfinished train of thought. I've been tossing this around in my head for a while. It's still very broad in terms of concepts explored.... but it's a start. 

Image source 

I've been wondering, since I honestly believe that Autism is not a "disorder" but instead is a different kind of neurology, where that leaves me in terms of calling it a disability. 

I have tried to identify key things that make an Autistic person different, and then figure out what is behind each thing that is actually in common with a person who is not Autistic (or a "person lacking Autism" which is a phrase I read this week, and L O V E).

So, if (in the case of my kids)......
Meltdowns = not having sensory regulation needs met
Not wanting heaps of social contact = introvert 
Struggling to keep pace at school= system designed in a way that doesn't suit his/her learning style
Stimming= society believes some stims are inappropriate based on some arbitrarily decided-by-no-one-in-particular set of constructs

Then I come to this.....
Theory- autism is not so much a disability in itself, but society disables Autistic people by being unwilling >to accept some differences as part of the normal or >make accommodations to support their needs.

Thoughts?

Just like me

Ear defenders and sunglasses were required for MissG to make it to the dinner table last night. 

I have been aware lately of letting her do what she is comfortable with to cope with sensory input. I want her to grow up feeling confident about who she is and unashamed of doing what feels right to her. I hate the thought that she might grow up feeling she has to conform to what others do to feel valuable. But I am also aware of her need to feel accepted and not different from everybody. 

There is, unfortunately, a lack of Autistic adult role models in my childrens lives, and I find myself relying on a few wonderful people I have met online as my main source of Autistic adult role model for my kids, even though they will likely never meet them in real life. I suspect these people are quite unaware of the impact they are having on my family and how grateful I am for it. One way I do this is by showing the kids photos of these people and telling the stories I know from chatting with them online. I talk about their strengths and all the things they can do. I talk about strategies I know they use to manage their challenges. 

So, as MissG sat at the table with her ear defenders and sunglasses on I mentioned that I know some adults who use ear defenders. We talked about that a bit and she asked to see them. I said they live far away, but I could show her a photo. So we had a look online for Paula and found a picture of her wearing ear defenders and sunglasses! MissG was really happy about it. She looked for a while......

"Is she Autistic, just like me?" 

"Yes" 

"And sometimes things are too loud for her?"

"Yes" 

"She looks a bit funny" (pointing to the ear defenders)

"She looks happy to me" 

"Because she has her ear defenders?" 

"Yes, I think they help her feel better when things are loud" 

"Just like me?" 

"Yes" 

....... and we had a great talk about being Autistic and how its ok to do what you need to when you are a kid and even when you are an adult.  We also looked at Paula's Autism Acceptance blog's picture gallery and talked about the images we saw there, and I took the opportunity to introduce the idea of typing for communication instead of speaking to MissG. She liked that idea very much because "sometimes those grown ups get sad and can't talk, just like me?" 

How important it is that we have people we can relate to on our journeys! I can't tell you how fortunate I feel to be able to show my daughter others "just like her" as a way of helping her feel more confident to be herself. 

What if I don't want ABA therapy for my Autistic child?

So, today my dad sent me the link to this gem of media reporting <insert sarcasm font> 

Here is the link if you want to go see it in it's original form....  http://www.smh.com.au/opinion/political-news/scheme-will-cover-cost-of-autism-treatment-20130510-2jd94.html

Below is the full text of the article.

The national disability insurance scheme will cover ''most'' people with autism and could pay the full cost of early intervention programs, Disability Reform Minister Jenny Macklin has declared in the latest clue as to what the $22 billion-a-year scheme will cover.

Autism affects about one in 100 children in Australia. Diagnoses of the condition more than doubled in Australia from 2003 to 2009 - 64,000 Australians have autism, latest figures show.

There were fears that the condition would be excluded from the scheme, or that the support provided by DisabilityCare Australia would be no greater than the current program, which funds only a fraction of the cost of the most effective therapies.

Opposition Leader Tony Abbott has demanded the government clarify whether autism will be included in the scheme, but ministers have only pointed to the legislation passed in March, which set broad parameters.

But in an interview with Fairfax Media, Ms Macklin confirmed the scheme would support ''most'' people with autism but stressed the agency would work with people to identify their individual needs.

''People are very different, they have very different levels of disability, and very different levels of ability, so what they need from DisabilityCare Australia will really vary.''

The government's Helping Children with Autism program provides families of children with autism $6000 a year for two years. About 19,000 children used that funding in the program's first five years. But the annual cost of applied behaviour analysis therapy - the only specific early intervention the federal Families Department rates as effective based on ''established research evidence'' - is $40,000.

That research shows about 50 per cent of children with autism are able to reach a normal educational outcome by age six.

Ms Macklin said that where an early intervention therapy is deemed ''reasonable and necessary'' DisabilityCare would be able to fund its full cost.

Funding applied behaviour analysis therapy could cost the scheme more than $300 million a year once it is fully operational.

Ms Macklin said DisabilityCare would over time replace the autism program, but no family would see their level of support reduced.

''If people are getting an autism support package from the Commonwealth now, that will continue until that child is brought into DisabilityCare Australia and their needs are assessed,'' she said.

Nicole Rogerson, chief executive of Autism Awareness Australia and the mother of a 17-year-old boy with autism, said ''we would be absolutely thrilled if what the minister is saying actually happens''.

''Autism is not a stagnant diagnosis,'' she said.

''If we give children with milder forms of it really intensive, evidence-based intervention, some of those children will go on to come off the diagnostic criteria for autism and will go on to have completely independent lives, and that should be the outcome of the NDIS.''

This is the first time I've commented on this blog about the NDIS. I'm very skeptical of it, and this article highlights most of the reasons why. 

Firstly- learning that "The national disability insurance scheme will cover ''most'' people with autism and could pay the full cost of early intervention programs" (emphasis mine) does nothing to reassure me that the new system will be any better than the old one. In fact it could be worse for many. Come to think of it, I've not seen any information anywhere so far that tells me exactly how anything will be done to make services or funding better, easier to access or more appropriate for anyone with a disability. 

Secondly- who decides what to deem "reasonable and necessary" therapy? What if I don't want my Autistic child to receive the therapy that is covered because it has been deemed "reasonable and necessary"? What if I want to do something that is not deemed "reasonable and necessary"?  

What if I don't want ABA therapy for my Autistic child? 

Autism is not a disease. 

It is not an illness. 

It is not something that you can get rid of. 

It is a neurology. 

It is the way a brain works. 

It is part of a person. 

It is for this reason that I disagree with Nicole Rogerson (" chief executive of Autism Awareness Australia and the mother of a 17-year-old boy with autism") that it should be an outcome of the NDIS that children should "go on to come off the diagnostic criteria for autism". Being not Autistic any more is not a prerequisite to living an independent life! Neither is still being Autistic but hiding it so well that no one can tell. I know plenty of Autistic Adults who live independently... many of them earning more than I do in their jobs. Lots of them raising children, some of them as single parents. 

{And while we are talking about Autisitic Adults, why aren't they getting a mention in this article? Sure it's important to support Autistic children, but what about the adults? They have support needs too. I sincerely doubt that in 6 years time MasterL is suddenly going to stop needing support. And no, before some clever person points out that I am contradicting myself, I don't think that needing support and living independently contradict each other. I live independently, and find the support of my husband family and friends invaluable, as I'm sure most people do- Autistic or not.}

For the same reason I also disagree that ABA is the be all and end all of therapy options. Don't get me wrong- I like science, and scientifically proven therapy is a good thing. ABA does what it says it will do. It helps reduce undesirable behaviours. The thing is I do not want to send my child into 20 hours a week of therapy designed to train them not to engage in behaviours that are only undesirable because society deems them to be for no real reason other than that's how it is. 

I don't want my kids rewarded for not flapping.

I don't want my kids to be forced to look people in the eye. 

I don't want my kids taught unquestioning compliance to social norms and authority figures. 

I don't want my kids to become indistinguishable from their peers. 

And if that's what the NDIS will  be providing to "help" Autistic people, they can count my family out. 

Time management plan

MasterL is 14 and in year 8 at school. He is Autistic, and struggles with many aspects of the school day.... social interactions, keeping up with instructions in class, unexpected interruptions... just to name a few.  His workload is increasing which means more homework, and he is finding it difficult to balance the time he spends on the things he wants to do and the things he has to do when he is at home. 

To be honest, I struggle with the same thing! So much so that sometimes during the day when the kids are at school I get so caught up in a project that I want to do uninterrupted that I lose track of time. So I did something to prevent me being late. I set an alarm on my phone. At 2.30 my phone asks me if BabyR needs to have a feed before we go pick up the kids, and at 2.45 my phone reminds me to leave to get the kids. Sometimes I get to the school early and I'll be standing there chatting with other parents when the alarm goes off. At first they used to laugh at me. Now they all just say "It's time to go get the kids"!!

Tonight when MasterL was having a bit of a meltdown and telling me how much homework he had and that he'd known about it for a while but now it is due and he doesn't have enough time to do it all..... we decided he needed to set a routine around homework. He already has a few routines he runs for himself during the day so this is not a new idea for him. I suggested that he set some alarms like I have to help him remember when to do things until it becomes habit. He was happy to do this, so we sat down together and set some alarms. 


He decided to have alarms for homework time in the afternoon, getting ready for bed time and lights out time. He must have really liked the idea because then he went on to add alarms for the weekend to remind himself to check if he needs to do homework and to clean his room. 

The great thing was that once he had the alarms set he was so much calmer, and managed to go through the rest of the night easily even though his workload had not changed. It's amazing how having a plan makes everything so much easier to manage. 

Pushing our limits and making progress

Today at the school there was a special afternoon of activities celebrating the cultures of Australia's Indigenous people. At the end of the afternoon there was a performance of traditional dance. This involved a lot of loud noises. Feet stomping, hands clapping, sticks tapping, and men shouting and singing. LOUD!!! We were sitting on the floor. MissK on one side of me and MissG on the other. MissG has numerous sensory sensitivities, and loud noise is a big trigger for her. 

As soon as the show started I began to watch her for signs that she was becoming overwhelmed so we could leave when she needed to. After about 2 minutes MissG said, "It's very loud". "Yes, do you want to go?" "Not yet." I wasn't expecting that. She then sat through about 20 minutes of the performance, without flinching once. 

Her shoulders were not hunched. 


She didn't cover her ears. 

She didn't try to hide behind me. 

As soon as it was finished she wanted to go. I pushed her to stay a minute longer so we could take a photograph with some of the performers. I really wanted to have a reminder of the performance, and of the milestone MissG had reached in being able to sit through it, noise and all. I got the shot, and we went outside. 

Then I realised I had pushed it too far. The meltdown began. Suddenly everything was wrong. She couldn't carry her bag anymore (I offered to carry it). She wanted a balloon (they had run out). She didn't want to leave (BabyR was overdue a feed and an nappy change and I really needed to get home). Someone looked at her!! It went on. 

As I did my best to be calm for her and tried to help her through it with many eyes on us, even though I was sorry I pushed the limits too far, I found myself feeling just a bit proud. Even though she was in the middle of a meltdown she said to me, "I want to run away". She didn't actually do it. She just said it. 

Progress.

In the middle of a meltdown, even though she was unable to stop herself from crying and yelling and being irrational about everything, she was talking to me in clear sentences about how she was feeling.

Progress.

The meltdown only started after spending 20 minutes in a highly sensory environment, and having to wait to leave when she wanted to go immediately, instead of during the first 5 minutes of the performance.

Progress. 

And I am happy for her. She loves to dance, and to watch people dancing. She loves music and all kinds of performances. So to see her today able to sit and enjoy the whole experience made me very happy for her.

Yes. My girl is making progress. 

Amazing Adventures celebrates 1000 Ausome Things #AutismPositivity2013

I've been thinking about what to write in this flash blog post forabout a week. This years flash blog focuses on all the "Ausome" things about Autism.

I thought about telling you how great my Autistic kids are because they are honest, loyal, persistent, funny, creative and brave. 

I thought about telling you that I have learned so much from them about being authentic. 

I thought about saying how cool it is to see them get involved in special interests when they find out heaps of information about different topics. 

Then I had my best idea- I thought of asking the kids what they think is awesome about being Autistic. 

MissG is 5, and she is still just learning about what Autism is going to mean for her. But I will say that both she and I think it is awesome that she went to bed tonight wearing nothing but her underpants and a cape.

MasterL is 14. He's got a pretty good grasp on how he is different from others and is developing good strategies to manage sensory issues and things he finds stressful. 

So I asked him what he thinks is awesome about being Autistic. 

To get him thinking I asked does he like being good at computer games, coming up with stories, or being good at researching to find out information about things he is interested in. 

He said yes, but that he didn't think those things has a lot to do with being Autistic. 

So I stopped talking and listened to him (sometimes I am so clever!) He thought for a minute and then he said this:

"I think the thing I like most about being Autistic is that I know I am different from lots of other people and I feel proud of who I am" 

..... I think that is pretty awesome!

This post is part of the #Autism Positivity 2013 Flash Blog in which bloggers all over the world will be sharing "Ausome things" in an effort to flood the internet with positive messages for people to find when they search for information on Autism.