Thursday, November 28, 2013

Transition to "big school"

It's that time of year in Australia when parents who have kids starting school next year are really feeling nervous. Most schools have run a transition program of some sort. A lot of parents are buying uniforms, have been given the date for their childs Best Start assessment (in NSW), and are counting down until the end of preschool for the year. If you have an Autistic child, this can be a very nervous time. It was for me a year ago. We had MissG enrolled in a school I knew was fantastic, but I was still nervous. How would she cope with the noise? The teacher? Making new friends? Having to move around school in a large group? Having to be in a classroom with a large group? Would she remember to go to the bathroom? Would she eat? What would happen if she had a sensory overload? 

We started preparing very early in the year, and I am happy to now be able to say that all our planning paid off. MissG has had a good year. Not without its hiccups, but a good year! 

I thought I would share the links to the posts I wrote last year as we went through the process of getting ready. Here they are, all in one place for you to find easily and have a read through. Of course, not all kids are the same, what worked for us may not be right for you, but hopefully reading our experience will be helpful, even if it only triggers an idea for you that will work for your chid.

Part One- The Overview

Part Two- The Funding Application

Part Three- Kindergarten Orientation

Part Four- The Safe Hiding Space

Off she goes... To School

This is Autism Acceptance
This last link is to a post I wrote after MissG had been at school a few months. I'm including it because I think it is important to share what it looks like when the staff of a school truly accept our kids just as they are, and to encourage all of you to look for a school that will do this for your child. They are out there. 

So there you are, our journey to "big school".

And as I publish this post I send out my best wishes to all of you who are making this transition over the new year. If you have questions or worries and would like someone to talk to, please do send me a message either by commenting her or by using the message box on the Facebook page.

Tuesday, November 19, 2013

L writes for the #thisisautism flashblog

MasterL (14 year old Autistic, who has a 6 year old Autistic sister and 4 other siblings) has something to say to Suzanne Wright. When he heard about what she had written in her recent letter and found out there was an opportunity to reply to her through the flashblog, he asked me to post this.


This is an artwork by L.
He enjoys art, music and computer games.
He is learning to program computers and wants to
work as a game programmer in a few years
when he leaves school.
Dear Mrs Wright,

I don't want to come straight out and say you are wrong because when people do that to me I find it rude.

But, my life isn't miserable.

My sisters life isn't miserable.

My family's life isn't miserable, or, I guess they are only as miserable as any other family.

Maybe you should ask Autistic people if they are miserable before you tell everybody that they are.

Sincerely,
L










#thisisautism

Saturday, November 9, 2013

My kids are growing up

My kids are growing up.

Which is, of course, completely obvious. That's what kids do. Yet it still needs to be said.

My kids are growing up.

This time last year I was writing about the difficulties Master L was having at school. He had endured a year of being bullied. His individual funding had been taken away, so he was getting much less support at school. I feared this year would be worse. 

Despite all the problems he was having, L managed to continue to perform well academically, and the school took the step of moving him into the Gifted class for this year. This had the effect of taking out of the way of the bullies and into a setting where learning was more of a focus than socialising, and it turned out to be what he needed, for the most part. 

The first half of the year went well. The second part of the year got harder as work load increased and fatigue began to set in. 

School is still a hard place for my boy. Communication is still an issue. Sensory overload is still an issue. Unexpected change is still an issue. He still does not like school. 

But he recognises its purpose for him. 

We were talking about the fact that he will need to return to the general population of students next year, and he was expressing nervousness about that, and a desire to not go to school, but to be homeschooled instead. 

It is an idea that Hubby and I have kept in the back of our minds for the past two years, and will continue to. If L reaches a point that any academic and learning benefit of him remaining at school is outweighed by his stress we will need to remove him from school. 

But when we last talked to him about it he told us that he can see the benefits of being at school because there he has resources available to him that we cannot provide in a home schooling environment. Despite it being hard for him, he will continue to go and cope with the difficult parts. 

Yes. He is growing up. And I am proud.


As always I asked for and received Ls permission to publish this.

Friday, September 27, 2013

Dear New OT....


Dear New OT,
it is more appropriate for me to say my children are Autistic than it is for you to correct me with “children with Autism.....” and then go on to say “or aren’t you at all concerned about being politically correct?”
Also, just so you know, if you are trying to compliment me, saying “you have done such a good job that she comes across as completely neurotypical” is not the way to go about it. 
If you are trying to compliment her, saying "she is obviously high functioning" is not a great way to do it, and makes me worry you aren't looking at her as an individual but rather as a stereotype, which in turn makes me worry that you are going to overlook the struggles she has. 
And if you want to impress me, or gain my confidence, try something other than “I’m trained in DIR so I can help with her sensory issues”.
You see, I don’t mind at all that my kids are Autistic. Yes, they are Autistic. Autism is not a flaw they have added to them that needs to be corrected. It is a part of who they are just as much as having blue eyes is. 
For the record, I see "politically correct" as a construct the majority uses to determine how the minority should be perceived and treated. Accusing me of being unconcerned with being PC is a compliment. Your interpretation of my stance as being bad is an insult given the amount of time I have spent thinking over the issue of how the language used to describe my children affects them. 
I have never, and won’t ever, do anything to train their Autism out of them. 
I have never, and won’t ever, attempt to extinguish behaviours my children find useful or calming simply because others see as them strange (unless of course they are dangerous!). 
And I am perfectly happy for you to play with my child and help her develop some helpful sensory regulation strategies- I’m pretty sure that I was clear that is my expectation when we met- but if you ever try to therapy my child to be “better” “fixed” or “less Autistic” you will not ever see us walk through your door again. My daughters only “issues” are that many people in society are unwilling to be accepting and make the changes necessary to support people who are not the majority, and that most people who assume because she can talk to them confidently also assume when she struggles with sensory overload she is just misbehaving. 
So you can help her with some strategies based on the information I give you rather than your assumptions about her, or we are out of here. 
Sincerely,
Michelle

Sunday, September 22, 2013

Functioning labels

Have you heard the term "functioning labels" in relation to Autism diagnosis? It refers to the tendency to call an Autistic person "high functioning" or "just an Aspie" if they don't seem "too badly affected by Autism" and to refer to Autistic people who are non-verbal or have trouble with toileting or who stim a lot more noticeably as "severely Autistic" or "low functioning". I guess people do this in an attempt to let others know more information about the Autistic person in question. However, I have a real problem with it, and in this post I will explain why.


When you start categorising into ability based on outward appearance, you put people into groups that do not accurately reflect who they really are. You minimise their struggles. You overlook their strengths. You make assumptions you have no evidence for and no right to make. 

But it is even more complex than that.

The best way to explain why I don’t like function labels is to let Autistic people tell you what they think of them...... 

Amy says 

“I am one of those autistics who were said to be hopeless. Doctors and “experts” were convinced that I would never make any progress in life, that my parents were better off sending me away so they could have one. The “experts” said I was “too low-functioning to learn”.
Of course, they were wrong. I am here, I have an independent mind, a fairly independent life. I taught myself to read and I am a writer. But I am still non-speaking and I look very disabled. I also need a lot of help with things that are considered simple by most people. Maybe that’s why the “low-functioning” label stuck. It happens to a lot of autistics like me.
The assessment is incomplete and based on parameters that were created for non-autistics, by non-autistics, not taking into consideration the neurological differences of autistics.”


“I am autistic, non-speaking. I am also labeled “low-functioning”. This label is a pre-judgment based on what I cannot do. It makes people look at me with pity instead of trying to get to know me, listen to my ideas.”


“....it is very dismissive to call someone “too high-functioning to understand” as if they don’t have challenges, as if their autistic lives are just an adventure with a happy ending. Some autistics might be able to live independently and work; some have children and seem to live an ordinary life. But they also have moments when they might “lose” their ability to speak, ..... “


Alyssa says

“So, what are we defining functioning by anyways? We ALL have strengths and weaknesses. If I'm high functioning, you just ignore the weaknesses, and if I'm low functioning, you just ignore the strengths. Either way, we get hurt (and ignored!) 


Judy says

“In reality high-functioning and low-functioning are not real labels, having no definition, no skill set lists, and no diagnostic criteria. Yet these words are often used to determine opportunities that will be denied or extended to an autistic and in assigning the correct amount of personal responsibility and blame to an autistic for the way his autism plays out in everyday life. 


Ibby says 

“A person is not a function.  A person is a person.” 

and there is a great story that goes with it

Nick says

"Without the fictive reference point of “normal,” functioning labels – “high-functioning Autism” and “low-functioning Autism” – are also revealed to be absurd fictions. “High-functioning” or “low-functioning” compared to what?Who gets to decide what the proper “function” of any individual human should be?"


Square 8 wrote a great piece called “I am Joe’s Functioning Label”




You can also find the content of this post at the Facebook Page Parenting Autistic Children With Love And Acceptance where I help with moderating. It's a great page for those wanting to get involved in discussion about respecting Autistic people and listening to their voices on issues important to them.

Sunday, September 8, 2013

Why do I call my children Autistic?



One of the debates that rages like a never ending tornado in the Autism community is over language. 

Should we refer to people diagnosed with "Autism Spectrum Disorder" as persons with Autism or as Autistic people?

The question has a reputation for dividing opinions and groups, and for that reason I have refrained from writing about it previously. However, last night someone made a visit to my Facebook page to correct me on my use of language in the name of my blog. Her argument was that I should be using what is known as “person first language” when I refer to my children. She suggested the blog should be called Amazing Adventures parenting children with Autism. She also implied that my current use of language is an indication that I do not respect my children. So, I thought it might be time I wrote about this. 

I have seen the argument that person first language is more respectful that identity first language before. Some people say that putting the disability before the person in language shows you don’t value the person, and that it means you see the disability more than you see them. 

I have also come across an argument that goes along the lines of “you wouldn’t call a person with cancer ‘cancerous’ so you shouldn’t call a person with Autism ‘Autistic’.” In fact, this one was levelled at me on my Facebook page during this week just gone too. 

If you have been following my blog for any amount of time you will have noticed that I refer to my children as Autistic. As with pretty much everything I do, this is a conscious and deliberate decision that I spent a fair amount of time thinking through. 

While I was thinking about it I made sure to read what Autistic adults think about this. I value the thoughts and opinions of the Autistic adults I know very much. They hold a wisdom I cannot have, as I am not Autistic. They know what it means to be an Autistic child and to grow up in a world that is not designed to support their needs. They also know what it is to be an Autistic adult, and they provide me with valuable insights that are helping me support my children as they grow and eventually become adults themselves. This is not something they are obligated to do. They are very generous in answering my questions, and I am very grateful to them for the time they give to help me learn and grow as a parent. 

So, what do Autistic adults have to say on this? There is a hint in the way I have been referring to them! As I listened there were three main issues I noticed.

The first thing I heard them say was that it is important to respect the way a person wishes to identify. That is, if a person prefers to be referred to using identity first language, you should refer to them in that way. This is why I call my friends Autistic. If I come across someone who prefers to be referred to using person first language I will say they have been diagnosed with Autism or say they are “on the spectrum” instead. I tend not to use the exact phrase “person with Autism” though (unless they specifically direct me that this is what they prefer). The reason for this will become clear in the next few paragraphs. 

The second thing I heard them say is that they find person first language problematic for many reasons. To explain this I am going to use the words of Autistic writers, because their voices should be heard on this issue, and because they say it so much better than I could!

Lydia, who writes the blog Autistic Hoya, has spent a lot of time looking into the issue of person first vs identity first language. Reading what she has written taught me that person first language is problematic because it feeds the idea that Being Autistic is something that can be separated from a person and that it is in some way bad. The key things she said that impacted on me are as follows: 

“In the autism community, many self-advocates and their allies prefer terminology such as "Autistic," "Autistic person," or "Autistic individual" because we understand autism as an inherent part of an individual's identity..... “

“...when people say "person with autism," it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.”

““Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic. I am also Asian, Chinese, American, Christian, Liberal, and female. 
These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else. “

You can read the whole of Lydia’s article here 
and the second part of her writing on the topic here.

NeurodivergentK, who writes the blog Radical Neurodivergence Speaking, taught me that arguing for person first language by comparing Autism to Cancer is just plain offensive. To both Autistic people and to people affected by Cancer.

“Now, why I feel the autism/cancer comparison is disrespectful. First, it's disrespectful to autistic people. We don't have something growing in us attempting to kill us. We don't have a "devastating disease" which, let's face it, cancer usually is. We don't require painful chemotherapy to stay alive. The cancer comparison is nothing but lazy writing and a way to promote funding to people trying to get rid of us.

You know who else it disrespects? People affected by cancer. Ask anyone who lost a child to cancer-they'd have that child back, autistic, cognitively challenged, it wouldn't matter. Their child would be changed (in some cases almost to someone not the kid they remembered) but they would have their baby back. Ask anyone going through chemotherapy if there's anything worse than this. Hell no. Cancer is expensive, cancer is exhausting, and cancer KILLS. Give the families a little respect. Give the people who actually HAVE cancer a little respect. “

You can read the whole article here

The third key message I got from the Autistic adults I know is that they prefer to be called Autistic. It is something they are proud of, and a part of their identity they want recognised in positive ways. 

After reading what Autistic adults I wanted to talk to my kids. MissG is too young to be able to understand the issues around this topic, so I haven't talked to her about it. When she is older I will. MasterL is old enough to begin thinking about it. I asked him how he would like me to refer to him, and he said, "by my name", which is a really good point! After some discussion, when I was sure he understood what I meant he said "Sometimes I tell people I have Aspergers sometimes I say I am Autistic, but on the blog you can say I am Autistic". And that is enough for me. 

My children are Autistic.

I could go on, but that’s enough for one post, I think. 

I am more than happy to answer honest questions on this topic, and to provide more links and information for people genuinely interested. I will not be engaging with people who comment in order to correct me or make deliberately inflammatory remarks. This is my opinion and I have come to it after much thought- I won’t be changing because someone picks an online fight with me, and I won’t be subjecting my readers to that sort of comment either. 

Friday, September 6, 2013

Murder is not acceptable

Tonight a 14 year old girl lies in a hospital battling the effects of carbon monoxide poisoning because her mother tried to kill her. And all over the place I see sympathy for this mother. Do you know why? Because her daughter, Issy, is Autistic. They are saying they feel empathy for her. Because her daughter was aggressive and hard to live with. They say it is because she was failed by the system. Some say they can understand why she did it. 

I can't. I can't understand at all.

Can you imagine how it feels to be an Autistic person reading these proclamations of sympathy and support for the mother who attempted to murder her child- a child who is much like they were as children? 

Can you imagine how my children would feel if I told them that there is a girl fighting for her life because her mother tried to kill her and that people feel sorry for the mother because her daughter is Autistic- like them? 

I won't tell them, though. My children live in a house where they are safe from this news. Where they are safe. They do not need to know about this. And I hope that by the time they are old enough that they will be exposed to the news without my filtering it, that the world will have changed to be a place where murder is unacceptable no matter what. 

Please, please, please do not stop to comment here if you want to justify, explain to me, or in any other way support the murder or harm of Autistic children by their parents or carers. Please don't. 

My heart is broken for Issy. She deserves better.


Here are some links to what some others are saying on this:







Thursday, September 5, 2013

Opinions, online etiquette and Autistic safe space


There has been very little "drama" on this blog and its Facebook Page in the 18 months or so that it has been here. I love that!

I am noticing a shift in the way people interact on blogs and Facebook Pages, though. I am seeing a lot of arguing, accusing and just straight out poor behaviour (not on this page!). People seem to feel that they should come onto a blog or page and make sure that things are "democratic" and that "free speech" is upheld. It seems to me, however, that these things are code for "I disagree with you and I want to be able to do that loudly and rudely on your blog/page without you asking me not to". And I would disagree that that is what blogs are for.

The fact is that it is impossible for a blog to actually be a democracy. It is not even possible for a blog to be unbiased. A blog is a collection of thoughts and opinions put together by a person who has put time and effort into deciding what they think, believe and value. In my experience a LOT of time and effort goes into this.

In my social circle, and throughout my life, I and the people I have interacted with have worked on the assumption that it would be rude to walk into someones house and start to criticise them or what you think you know about them.

I feel it is the same with interactions on blogs and on Facebook. A blog is like someones house. I would not go to visit a blog that I can see holds different values and opinions than I do and expect them to welcome me if I begin attacking them or the things they have written on their blog.

Likewise, if I post something here I would hope that people would recognise that this is my blog, where I post things I agree with, value and support. I would hope that people would respect that and refrain from being rude, or aggressive about their disagreement.

In the past I have purposely avoided posting on topics that I know can be divisive. This has been because I have not felt up to the task of having to moderate the blog heavily.

These days I am learning a lot about how important it is to be up front about what I believe. I am learning about the importance of there being places that are safe for Autistics to visit online. I want these places to exist for my kids when they are older.

To this end, you will start to see more open discussion of hard topics on this blog. You will notice me intentionally opposing some view points. I am working towards creating a space where it is safe for Autistic people to come- where they do not have to worry about seeing comments that make them feel they are seen as anything other than wonderful just the way they are.

It will be a work in progress. I am still learning. I am listening to Autistic adults. I am listening to  my children. I am figuring out where I may have contributed to hurt in the past and endeavouring not to do that again.

I hope that you will want to come on this journey with me.

Of course, if you find that you disagree with me and you are no longer comfortable here, that is fine. All our journeys are different. I will not be upset or offended if you decide to unlike the page and stop visiting the blog. I am not here to be popular or to chase after "likes". I am just here learning and documenting the journey.

Saturday, August 31, 2013

Interacting with people who are not accepting of Autistics

Over the last couple of months, I've had a couple of experiences with members of our local community who are aware of Autism, but not very accepting of it. It's a hard situation for me, because I like to think I can be tolerant of and gracious towards all people, but I am learning there are some people I just can't. I'm going to tell you two stories, and you will see what I mean.

Quite a few weeks ago I posted on my facebook page about a conversation I'd had with a man at playgroup. When it came up in conversation that I have Autistic children he said "Oh no! So what do you do? Are they like real members of the family?" Of course, when I write it down his intonation is gone, and it is impossible to read the intent behind his words. Face to face I could tell that he did not mean to be offensive. He was trying to let me know that he knows enough about some Autism to realise that there are Autistic people who struggle significantly with communication and socialisation. He was way off base in his interpretation, and so I tried to calmly point out to him that his comment was inappropriate and take the opportunity to help him learn about acceptance of people with differences (which is everyone!). This kind of person I am happy to talk to and engage with because I believe they are honestly trying to understand and are open to learning. 

Last week I was subject to what I believe to be an unprovoked written attack by someone in my local community while she was contributing to a  discussion with a mutual friend in a public facebook discussion. This attack stunned me in its viciousness and the strength of the disdain this person has toward me. I honestly don't know why or if I have done anything real to provoke it. Twice in the past I have done things I knew would upset and result in my being publicly attacked, but I did them anyway, after attempting to explain to the other people involved, because I believed then (and still do) that it was the right thing to do to serve the needs of the community. This time I am sure the person thinks I have done something, but I don't know what it is. 

So this is what she said......I will not quote her, as I did in the first story, because the words she used I don't care to repeat, and because she referred to my children using a word I wouldn't use against my worst adult enemy (I don't actually have a worst enemy, but you know the saying....!!), let alone against a child. The polite summary of her beliefs about me is this:  
your children are not Autistic, they are just poorly behaved. They are poorly behaved because you need to back off from parenting them the way you do. You only had your children labelled with Autism because you are lazy, you want attention and you want access to government funding. And six children is too many. The comments were not said to me, they were said about me in a conversation I had been tagged in, so she knew I was aware of what she was saying. 

Now, to be clear, I actually don't really care what this person thinks of me. My response on facebook was to not respond. I gave it no public air time. I vented privately to a couple of friends about the language she used to refer to my kids and that I couldn't understand why a person would find it necessary to be so openly disagreeable. I didn't mention it to anyone else, because it is not that important to me. 

I mention the situation here only because I know others of you out there have faced similar situations and might like to know that you are not alone. It is not your fault. You do not need to second guess your parenting, your childs diagnosis or anything else just because someone who doesn't know your life or care to try to understand it says something to you, or about you, when they are in a bad mood. 

In this instance I chose to completely ignore the tirades because I believe the person was not at all interested in changing her mind, she just wanted to say mean stuff. Maybe she was fishing for a reaction. Maybe not. Maybe she was trying to make me look bad. Maybe not. Maybe she was looking for support from others. Maybe not. I don't know. I never will know. I don't need to know. My life is full and busy enough with things that are important to me that I do not have time to spend on people like the one in my second story. For people like the one in the first story, who may speak awkwardly and inadvertently rub me up the wrong way, I will continue to make time if I can see they are open minded. But the people who are only interested in attacking, justifying and demeaning, I have no time or even anyinterest in making time for. 

I hope that those of you who have experienced similar things can see that it is not your fault and that you needn't spend your precious time on it either. Instead, let's spend time putting our energy into our beautiful, unique families and our wonderful, brave and strong children! 

Thursday, August 1, 2013

The first lost tooth

When MissK lost a tooth a few months ago MissG was quite concerned. She wanted to look at it, and at the space it left. She remembered the discomfort of the dental work she had done last year. She asked lots of questions.... will it hurt when I lose a tooth? Will I be able to eat? Will the new tooth be big? And most importantly, will it bleed?

MissG doesn't really cope well with blood. We have talked about how clever her body is, and that when she bleeds her body sends platelets to clot the blood and form a covering over the cut so her skin can heal underneath. We have tried to convince her that seeing blood is good because it means her body is doing what it should.  We have told her the sting is temporary, and will pass soon. These days, she can talk quite calmly about it, and knows in theory that she doesn't need to worry. But when the moment comes that she cuts or grazes herself..... she panics! It's a quick rush to cover up the wound and soothe and calm her until the initial surprise and pain subside. Depending on the injury and her general state of mind at the time, this can take a while.

So MissG and I have both been a bit nervous about her losing teeth. I have been working on "wobbly tooth readiness" for a while. We have talked about what happens to cause your tooth to wobble, how it feels, how long it might be wobbly for, and what happens and how it will feel when the tooth falls out. MisG's older brothers and sisters have been drawn in to the preparation process, and have all told stories about how cool it is to get big teeth and that it doesn't hurt much when the baby ones fall out. 

Then her front tooth wobbled. And she got excited! 

We talked about what to do if her tooth falls out at school. We told her teacher that her tooth was wobbly and that MissG wants to save it and bring it home if it falls out at school.
We waited.
She wobbled it.
We waited. 
She got me to check it.
We waited.
She ate crunchy foods. It hurt. She ate soft foods.
We waited. 
She wobbled it more.
We waited.
She said, "this tooth has been wobbly for AGES!"

And then last night, while I was at the shops, my phone rang.

"Hello?"

"MY TOOTH FELL OUT!!"

I couldn't quite tell if it was an anxious yell or and excited yell. I went with excited...

"wow! That's great!!"

"I WAS IN THE BATH AND I WAS BLOWING THROUGH THE STRAW AND MY TOOTH FELL OUT AND I GOT IT AND PUT IT IN A BAG AND I WIPED THE BLOOD WITH A TISSUE AND I WANT TO TAKE IT TO SCHOOL TOMORROW"

She was *so* excited. 

I was so relieved. Preparation had been successful, and she was happy. It doesn't get better than that!

Friday, July 19, 2013

best birthday ever






 MissG turned 6 this month. We try to keep her birthday celebrations pretty low key, because she really struggles with big gatherings and lots of noise and unpredictability. This year she asked to invite her whole class, but when we talked about it she decided 4 friends would be good. We made some invitations and handed them out at school. We made a calendar and she excitedly crossed off each day as she went to bed. As the day got closer we regularly heard comments like "I can't believe it's only 5 days until my birthday" and "I'm so excited I'm going to be six". She had chosen a dinosaur theme for her party, so we bought a few things, and she decided what she wanted her cake to look like. Anticipation was running high. She was disappointed that two friends couldn't come, but it didn't matter in the end. She had such a lovely time with the two that came, and the party was very relaxed and enjoyable for all. Just as we were about to wrap things up there was a little moment of anxiety over something not going as planned, but she took herself off to her room for a moment, and re-emerged back in control and ready to have more fun. All in all a great success of a party, and as her friends were going she threw her arms around my waist and declared "This is the best birthday EVER"!!!  
Mission accomplished! 








Thursday, June 20, 2013

Respecting his privacy

I realised something this week after a conversation with my 14 year old Autistic son.

I realised he is growing up. It sounds obvious, I know. But I don't mean he is getting taller, or more competent or wiser. I mean he is wanting to start to understand and navigate some of the more complex issues in relationships.

Then I realised something else.

We are entering a period of his life in which a lot of the significant things I will probably want to write about him will actually be private.

And I will need to honour that.

This seems a shame to me, in that the sharing of these sort of things with you all would likely be helpful for many. Lets face it, navigating the teen years is a time when parents value the support of other parents. Possibly even more so when we are navigating them with children who struggle to interpret social situations at the best of time, let alone with raging hormones while the situations are all new and the rules constantly change.

However, while I'd love to be able to engage in those sort of conversations with you, this falls squarely in the category of things I would not want my kids to see in future years that I had published about them. Especially since there are quite a few of you reading this blog who know my family personally.

So, you might notice me talking a bit less about my boy over the next while. At the very least there will be gaps in what I will be willing to say.

Because I love him.

Because he has a right to do this growing up without the world watching.

Because I respect his privacy.

Tuesday, June 11, 2013

Wooooooooo!!

This picture tells two stories.

First- I caught MissG mid stim.

{I have talked briefly about stimming in this post at Different kinds of normal}


Nick Walker defines stimming this way-
"To stim is to engage in movement and/or in other activity that stimulates one or more of one's senses, for the purpose (whether intentional or purely instinctive) of regulating one's own sensorimotor experience and/or state of consciousness. Examples of stims include (but are certainly not limited to) such activities as rocking, hand movements, humming, drumming, touching a surface, or gazing at running water. Functions of stimming include (but are certainly not limited to) self-calming and self-soothing; inducing, enhancing, or responding to experiences of sensory pleasure; regulating sensory input; integration of information; and accessing specific capacities and/or states of consciousness."

MissG licks her face as a way of regulating sensory input. She does it when concentrating hard, when stressed, excited and tired. Before we realised the licking was a stim we tried to get her to stop. She would say "I can't help it". Now we know what it is we don't ask her not to do it, we focus on teaching her how to care for her skin by encouraging her to use a cream on her face to help protect and heal the skin. She likes the feel of the cream, fortunately, so it is easy to get her to use it. Now we are trying to help her remember to use it without being prompted. I hope that at some stage she will replace the licking with use of a chapstick or lip balm as it will mean her face won't be sore. In the mean time, she licks and her skin is often quite red. 

Second- "Josh and the Woo Woo" is MissG's favourite book. (This is NOT a sponsored post!) It tells the story of a little bunny who struggles with all loud noises, until he hears a steam train for the first time. It's cute, and she can relate to it. She also loves when I read it and do the Woo Woo's really loudly and as much like a train whistle as I can. She asks me to read it pretty frequently, and as she is beginning to be a reader herself likes to join in pointing to words she recognises. She pretty much has it memorised now. Tonight she asked for a piece of paper, and shortly after appeared to show me that she had written "Wooooooooooooooooooooooooooooooooooooooooooo" on it. She asked for her photo to be taken. 

So, here is a very proud and excited MissG, stimming and showing me her writing and her favourite book.  Wooo!

Monday, June 10, 2013

Reminiscing about the week of the helmet


MissG's birthday is approaching. I've been thinking about all the things that have happened in her life the past couple of years, and how much she is growing up. 

I was going through some old photos and came across some of her birthday week a couple of years ago, and they really made me smile. 

She had been wanting a scooter for a long time, so we bought her one for her birthday, and of course bought her a helmet too. She loved that helmet! We called it the week of the helmet and when she did something with it on we called it an extreme sport. 

Here are some of the things she did while wearing the helmet that week. 
Extreme candle blowing

Extreme cooking 

Extreme play dough

Extreme dress ups

Extreme movie watching
...... and of course, she wore it to ride her scooter


Saturday, June 8, 2013

It feels good on the hands

I've been trying to get this picture for ages, but haven't managed to get a clear shot until the other day. Every time MissG comes to the supermarket with me this is what she does. We park downstairs and and have to use the travelator to go up to the shops and again to go back down to the car. I tend to get on the travelator and just stand there until I get to the top (why move my legs if I don't have to, right?!). MissG always runs up or down and when she gets to the end she stands between the two travelators and and lays her hands on the moving hand rails. She gets quite an intense look on her face while her hands rest there, like she is concentrating on something important. I asked her about it. She says it feels good and it tickles her hands. She says she likes that ones rail goes one way and the other goes a different way. 


While we were talking about it MasterL told me that there are railings around the stairs at his school that feel really good if he puts his jumper sleeve over his hand and runs it along the rail while he walks. 

No great break through or revelation, just part of our everyday. 

Thursday, May 23, 2013

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

Friday, May 17, 2013

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?

Thursday, May 16, 2013

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. 


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.