Saturday, May 11, 2013

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. 

Thursday, May 9, 2013

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. 

Wednesday, May 8, 2013

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. 

Wednesday, May 1, 2013

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.


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
Premier


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.