Tuesday, November 4, 2014

When school isn't working anymore

Those of you who have been following my parenting journey for a while know that I've spent a lot of time advocating for my kids in their school environments. We've had varying levels of success over the past few years in terms of gaining appropriate supports for the kids within the mainstream schooling environment. 

We've worked with some amazing teachers who have given their all to help the kids. We've also met some teachers who just don't "get it" and don't seem to want to. For the most part though, school was working well enough for the kids. 

Until this year. 

So we made a decision. 

Without going into too much detail, we decided that both MasterL and MissGs social and communication support needs were not being met, and that MasterL in particular was so overwhelmed that his stress was having an affect on his ability to learn in the school environment. MissG was still learning well, and enjoying school, but she was exhausted, and told us she did not want to go to school anymore. 

It's not an easy decision to make, on the one hand, because deciding to homeschool your children requires a substantial commitment of time and resources.... and to be honest, was not what I had anticipated we would be doing right now. But, on the other hand, it was an easy decision because we do not ever want to see our kids so overwhelmed that they cannot cope. I realise some people are not as lucky as us to be in the position to bring the kids home, but for us right now, it works. 

MasterL is enrolled in a Department of Education Distance Education school. MissG is currently away from school on an approved exemption, and is in the process of "unschooling". We will shortly be registering with our state homeschooling authority. 

The changes in both children since leaving the environments that were so stressful for them are easily observed. They are both calmer, happier and more relaxed. Meltdowns, shut downs and periods of overwhelm are occurring significantly less often. They have the opportunity to retreat and self regulate as they need to. They can take time to be creative instead of constantly needing to be on alert. MissG particularly is enjoying setting her own pace and seeking out learning that engages her and is relevant to her interests. 

So over the coming months this blog will undergo another change of focus.... we will be talking about home education and how that works in our family, along with other things that catch my interest or set off my injustice alarm. This parenting gig sure is an interesting journey. 

Sunday, August 10, 2014

I'd like to be able to shop at Build a Bear in Australia

The #boycottAutismSpeaks movement appears to have had a victory this week, as Build a Bear Workshop in the USA has announced it has ended its support of Autism Speaks.

This is very exciting news!! 

I'd be even more excited if it meant I could go buy bears for my kids.

Unfortunately, Build a Bear Workshop in Australia supports Autism Awareness Australia, who are responsible for spreading the same message Autism Speaks does. Their video 'Autism Awareness' is full of fear speech and tells the world that my kids minds and personalities have been stolen by Autism, and compares Autism to caner diabetes and AIDS. You can view the video here- https://www.youtube.com/watch?v=_7IFs3cIRak- but be warned, it is a horrible video. 

So, until I know Build a Bear is no longer supporting Autism Awareness Australia, I won't be shopping there. 


You can read an article I wrote on this topic during April this year here. This article was picked up by The Huffington Post, and can be read here.

Saturday, July 19, 2014

#boycottAutismSpeaks

It's no secret that I do not like Autism Speaks

There is a virtual protest against Autism Speaks on at the moment....  you can find out more about it on the Boycott Autism Speaks Facebook page, twitter account, and website.

If you do not like the message of fear Autism Speaks spreads, you might like to join in too. Write a message and send in a photo- easy!!


Here are the photos my family and I have contributed.

Image is L, a smiling teenaged boy in a red shirt,  holding two signs. The sign on the left reads "There are things about me that would change if I wasn't Autistic and I like myself the way I am  #boycottAutismSpeaks.  The sign on the right reads " Autism Speaks, 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.  #boycottAutismSpeaks "
Image is of a sign on a wooden table. It reads "I told my 7 year old Autistic daughter that there was a group of people trying to stop Autistic people from begin Autistic. She gasped. I asked her if that would be good. She frowned and said "no". "Why?", I asked.  "Because I like being Autistic"  She doesn't want to be in this photo, but told me I should share this sign with all the people who want to stop AS from trying to change them.  #boycottAutismSpeaks "

Image is of K, a young girl with shoulder length straight hair and pink framed glasses looking at the camera with a feint smile, holding a sign that says "I love my brother and sister just the way they are.  #boycottAutismSpeaks "


Image is of me, a light skinned brown haired woman wearing black framed glasses and looking at the camera. I am  holding a sign that reads "My Autistic children are HAPPY and HEALTHY, SMART and FUNNY,  RESOURCEFUL, PERSISTENT and CAPABLE OF SPEAKING FOR THEMSELVES  They are not missing, merely existing, a burden, tragedy, epidemic, health crisis, or a national emergency. I am not in despair. Please do not believe Autism Speaks when they try to tell you otherwise.  #boycottAutismSpeaks "

Wednesday, July 16, 2014

When the mouth says something different than the mind is thinking

Tonight MissG was having a really tough time coping with the noise in the house, and was barely "holding it together" when a ball accidentally bumped her on the head. It wasn't a big bump to cause physical pain, but she was very upset. A outburst followed, and MissG took herself off to her room to be alone for a while. 


After a few minutes I went to her and asked if she would like a hug, as she often appreciates some deep pressure squeezes when she is stressed. She replied "leave me alone". So I quietly left. 

When she came out she wanted to talk to me. She asked me to sit with her, and she told me that when she said "leave me alone" she had meant to say "I do want a hug".  

I asked her if she often found herself saying things that weren't what she wanted to say. She said "no" and then she said "but when I yelled 'I hate you' to E when the ball bumped me I meant to say 'I am OK'." 

We talked about this for a while, and I told her I knew of other Autistic people who who find it hard to get their mouths to say what they want to say when they are stressed. I told her about writing to communicate. She asked what to do if you can't write yet. I told her some people use pictures to communicate. She thought about that for a while, then said she wanted to tell E she didn't mean to say "I hate you". 


After she went to explain to E and she felt things were restored between them, she asked to draw pictures of her feelings. 

We got out some coloured paper and she drew some feelings. I asked her if she wanted to use her pictures to help let people know what she wants to say if she gets stressed. 

She loved the idea, so we set about putting together a book of feelings for MissG to use when she has trouble making her mouth say the same thing her mind is thinking. 


 The images in this post are the pictures MissG drew of how she feels at different times. Each has a caption written by me so that the people MissG shows the picture to knows what she means by them. There is a "title page" that says "MY FEELINGS" and has a few different pictures of faces on it. There is a yellow page with a smiling face that says 'I am happy'. Then a green page that has a face with a small smile that says 'I am OK'. Next is a pink page that has a picture of a person with their mouth open and hands on their cheeks that says 'I'm so surprised'. Following that is a light brown page with a face with an open mouth and eyebrows raised that says 'I wasn't expecting that!'. Next is a purple page picturing a face with downturned mouth and two tears under each eye that says 'I am sad'. A grey page follows showing a face with a downturned mouth and eyebrows close to the eyes that says 'I'm feeling cross'. The next picture is on dark brown paper, there is a picture of two people and a cat standing next to a fish tank, one person looks happy and one looks sad, the caption says 'I'm feeling a little disappointed'. The last picture is on blue paper and is of a person with wide eyes and a flat line mouth, the person has big ears and is holding their hands over their ears, it says 'That was too LOUD'.

The pictures and information in this post are all shared with MissG's permission.

Thursday, July 3, 2014

Sometimes I just want to cry

Can I be honest for a minute? Well, I'm always honest with you guys, but I want to tell you some honest hard sort of stuff. 

I love blogging. I really do. I usually don't care if a post gets lots of likes and lots of comments, because I work on the knowledge that it's worth writing if it makes a difference to just one person. 

I like begin an "activist"- pushing against the status quo. I think it is worth the effort to try to help people see things differently, maybe think about things in a way they haven't before. 

I saw a quote today- (sourced here)


Krishnamurti: “It is no measure of health to be well adjusted to a profoundly sick society.” 


and I hope that in some small way what I do when I write is to help people realise where society is sick and how they might be able to change that a bit in their part of the world. Most days I go to bed feeling like it is possible. 

But lately, I'm just feeling discouraged. Writing can be hard work. I put a lot of myself into what I write. I check with the kids to make sure they are comfortable with me sharing when I write about them.  I get a "bee in my bonnet" about things, and I try really hard to stand on the right side of justice and to support the Autistic community well. 

Then I look around the internet, and you know whose blogs and pages are the most popular? The ones with a feel good story every single day (whose life is actually like that???). The ones with lots of swearing. The ones that are funny or witty or just plain smartypantses (yes, that is a word).  Or worse, the ones who don't show much respect for their kids, and who would rather see their beautiful unique children be changed or 'cured'. 

When I see that, I get angry. I get a bit jealous, too. I start to want to see more likes, more comments, more people agreeing with me. 

Because I want to be heard. Because I want to know that all my effort standing up and saying something different than that message of tragedy and fear is making a difference. Because I want to be reassured that the world will be different for my kids than it has been for my adult Autistic friends. 

I can't guarantee that my efforts will lead to any of that. 

Lots of nights lately, I just want to cry. 

Wednesday, June 25, 2014

Mid year school report

It is almost term 2 holidays. MissK and MissGs school gives out mid year report cards this week. MissK has not received hers yet, but MissG brought hers home today.  

I read through it and was pleased with all the comments her teacher made... she is achieving well academically and her teacher reports she has a good attitude and loves learning, she takes pride in her work, she is confident, flexible and can compromise, she is considerate of others and is sensitive toward their needs. None of this was news to me. 

Despite what some "experts" would have us believe, Autistic kids are not completely rigid and inflexible. They are not completely self centred. They are not unable to empathise with others.  In an environment that supports their needs, Autistic children- like my MissG- are compassionate and confident beings who can really enjoy being around others. 

We see this with MissG at home when she offers toys to her little brother when he is upset, when she helps out when others need it, when she shares with her sister, and in many other situations. We work hard at home to maintain a safe space for everyone, and when we get it right this is the result. 

When we do see behaviour that some would label 'rigid', 'inflexible' and 'demanding' in MissG we can almost always identify the cause as being a sensory need that we have failed to meet.  

I'm so encouraged to see evidence that the school is also working to support her needs and is succeeding. MissG's class teacher is very good at this. Knowing that MissG is comfortable enough at school to be able to be flexible is a big thing for me.

Those who have been reading the blog for a while will know all the preparation we did before MissG started school (you can read about it by clicking here, if you are interested- the link will open in a new window). We chose the school we did because we knew the teachers there are good at supporting kids in an individual way. The hard work and careful planning are paying off. 

It was lovely to read all the positive comments about how well MissG is doing at school. But the comment that really spoke volumes to me wasn't about how MissG is interacting with others, or how she was performing academically. 

My biggest concern for MissG when she started school was how she wold manage when she experienced sensory overload or when she had difficulty communicating her needs when stressed. 

We have done our best to support MissG by giving her specific scripts to use when talking to others, and also to say to herself, when she is stressed or overloaded. We have done our best to support her by introducing strategies she can implement when she feels overwhelmed. 

Just the same as with all our children, we want MissG to be able to go out into the world independently of us and to be able to advocate for her needs and to be able to manage her stress in a way that does not exclude her from participating in activities she enjoys. So the comment that really made me smile was this,

"She is learning to deal with her emotions in a positive way and can independently calm herself so that she can carry on with activities." 

Which isn't to say that she doesn't struggle with this at all anymore, or that she always gets it "right"- just that more often now at school she is managing this on her own. And  that is progress toward managing the challenges she faces well and independently. 

Well done, MissG, well done. I know how much effort this takes for you. I am one super proud mum tonight.  


Image is a picture drawn by MissG of her, wearing a red shirt and black pants, standing in her classroom. There is a light green back ground on the bottom half of the picture with a line of drawings (one dark green and one red) hanging on a string just above her head height, and a purple and red window to the left of the picture at her was it height.
This picture is shared here with MissG's permission. 

Sunday, June 22, 2014

A big day out

We live in the Blue Mountains, NSW.  Each winter solstice there is a community event called Blue Mountains Winter Magic Festival. It's a huge day for our community. This year they estimate there were 40,000 visitors to the festival, which is held in the small town of Katoomba. You can get an idea of how full on it is by looking at this news story, and checking out the pictures on the Winter Magic Facebook page.

MasterL chooses not to go each year. He just doesn't get enough enjoyment from this sort of thing to make the crowds worth while dealing with. 

MissG always wants to go. She loves the music, especially the drums, and she loves seeing all the wonderful costumes and  amazing puppets, props, displays and performances. Even though she loves it, it is a massive challenge for her- the sensory input is extraordinary and takes a toll on her very quickly. When she was younger we could help her cope by letting her ride on our backs in the Macpac carrier. She is too big for that now, so other strategies are necessary. This year MissK was playing cornet in the City Band as part of the Parade, so we were committed to being there at least until she was finished, and we had to be there in time for her to meet up with the band well before the parade started. 

MissG wanted to dress up this year, as many people do. The theme was Phoenix Dreaming (a recognition of the strength of our Mountains community in the aftermath of the devastating fires that claimed over 200 homes last summer), so she wanted to be a phoenix. We made some additions to a red coat, and she was ready!!  

Image is of MissG in her phoenix costume:
a red jacket with hood that has eyes attached,
her face obscured by a yellow cap sticking out
from under the hood as her beak, and orange and
yellow fabric feathers draped over her shoulders.
She is holding her arms up at shoulder
height in the middle of a bit of a flap.


We had to drop MissK off at 10.30, so we took some time to walk around and see the stalls set up before hand. We did a little shopping, visited the stall of a lovely friend (who so insightfully offered the space under one of her tables as a sensory refuge for MissG if needed- thanks Jeni, you are a star!!) and slowly made our way to the drop off point while things were still relatively quiet. We dropped MissK off, and heading back to the main festival area to pass the time until the parade started.  


Image is of MissK wearing pink framed glasses,
a furry black bucket hat and black jacket,
holding her cornet in from of her
and smiling at the camera. 

 By now it was getting very busy, and very congested. So we decided to get out of the crowds for a while, and go do some chew therapy! One thing that helps MissG calm when things are stressful is chewing and sucking. We went and got a drink and and a chewy snack and found a quiet place to sit and eat. 

After 20 mins of quiet and chewing, MissG wanted to go and look at some more stalls, so we headed back into the crowd, but after only a few minutes it was enough, and she was really struggling. Because of the crowds it was hard to get to a quiet place quickly and poor MissG started to meltdown in the middle of a group of people. Just then a lady who was giving out balloons appeared, and MissG latched onto that as what she wanted to do to help calm herself. We grabbed a balloon and continued to head for a quiet spot (it really helps to be very familiar with the town in these sort of situations, I knew exactly where we could go to give her a break- if we had been somewhere unfamiliar this would have been much harder). 

In our quiet spot MissG busied herself with making the best balloon shadows she could, experimenting with the angle and height to get the best amount of colour showing through in the ballon shadow. She especially liked this shadow, and asked me to take a photo of it. 



Image is of the shadow of MissG holding her
balloon in front of her and looking up at it. 

After a while we decided to go back and see if the parade was starting soon. We found a not crowded space between two stalls next to a lovely lady with a cute puppy, who offered for MissG to move in front of her so she could see easily and not be squished, and we settled in just in time to see MissK go past. 

Image is of a group of people dressed in black playing
brass instruments while marching in a parade.
The back of MissK can be seen in her furry bucket hat.
There are music sheets on lyres and parts of
trumpets and cornets visible everywhere.

And as soon as she saw her sister go past, she was done. She needed to go, and that was that. We excused ourselves past the people behind us, and headed for the place we organised to meet MissK. Fortunately there was a good wall for shadow making while we waited. 

Image is of MissG in her phoenix outfit, facing a brick wall holding her red ballon.
There is another ballon above her head being held by a person out of the photo.
There is a shadow of MissG and her balloon on the wall, and the shadow of the other balloon next to her on her right. 


I was so proud of both my girls today. MissK for trying something new- it was a huge effort for her, after only learning cornet for a short while, to join in the parade. She did so well. And MissG for knowing her limits and letting me know what she needed to do to manage her stress and overwhelm. We left home at 9.30. We arrived back home at about 1.00.  Three and a half hours of pretty much too much everything. Even though it was hard, even though she did have an overload induced meltdown, her impression of the day was "It was good". And the best bit? "It was when we got the dolly". 





Thursday, June 19, 2014

Getting the "little" things done

This blog started 2 1/2 years ago mainly as a record of what we were doing, and to try to reach out in an encouraging way to other families. At some point in the past year or so, I stopped writing about our day to day and turned into an activist. It seems that every time I sit down to write I am angry about one injustice or another. It’s almost like writing about the “little” things is boring now. If there isn’t something brewing in my mind to write about that has me pretty worked up, it’s an unusual day. The trouble with that is that it is exhausting. And only writing about that stuff is an unrealistic representation of what I actually do every day. Sometimes I feel like, in the fight to advocate for the rights my kids have in the bigger picture, the little things get lost in my writing.

My day to day is not full of face to face situations in which I must actively defend to others my kids rights to exists as proud Autistic individuals. Some days do involve that, but thankfully they are not the majority. Mostly what I do each day is support my kids to help them discover the ways that work for them to live the best way they can. 

I’ve been working on finding ways to help MissG process language more efficiently. She wakes up very slowly in the mornings, as her sensory system relies on a lot of physical movement and stimulation to kick off each day. It’s hard for her to process auditory requests, especially in the morning, so getting ready for school is tough. After talking with some friends I learned that some of them also find auditory processing of spoken language difficult, but that they can process singing more easily. 
Image is a twirly music staff with a treble clef and a few notes on it

So, I have been trying singing to MissG in the mornings, using tunes I know she likes and putting the words of my requests to music. It’s helping!! 

Image is of a yellow hopper ball with long ear handles
and big eyes printed on it.




After re-reading the OT report from a couple of years back I remembered that bouncing was recommended as a way to help stimulate MissGs sensory system too, so after talking to her last night about how hard it is to wake up she agreed that it’s too cold out to use the trampoline in the morning but she would like to try swinging on her rocking horse to see if that helps her feel more prepared to leave the house for school. This morning she came to wake me up and tell me she had already done some rocking, and was ready for breakfast. For MissG to be ready to eat before 8 in the morning is unusual, so I'm calling that a win! Hopefully it is something she will find helpful over time. She did say to me this morning that she wants to get a "bouncy ball" again because she misses her old one. I promised to look for one to buy for her. 

Image is a pair of black ear defenders 
MasterL is now homeschooling, after a series of things happening that brought him and I to the conclusion that school was no longer a place conducive to learning for him. Today he was at the hardware shop with Hubby and I looking for a way to store the paints he is collecting to use on his model planes, and we saw a pair of ear defenders. It struck me what a difference removing him from the stress of the school environment has made, as he confidently said he would like to choose a pair to wear because sometimes the noise is just too much. 

Image is a white plastic cutlery set consisting
of a fork, knife and two spoons
We have introduced plastic cutlery as an always available option for use at meal times in our house, because metal cutlery is a sensory problem for MissG. Sometimes the accommodations are small, but they make such a difference. She ate a whole meal with a fork for the first time the other day. 


So, even though you will often see me writing about the “big stuff”, rest assured, life carries on here, one little decision, one little change, one little accomodation, one little success at a time. 


Wednesday, June 18, 2014

'Sesame Street' Partners With Autism Speaks: Why Are Autistic People Upset?: a repost

I wrote this  earlier this month and it was originally published on The Huffington Post.  I am reposting here now, in an attempt to continue to spread the word.....



'Sesame Street' Partners With Autism Speaks: Why Are Autistic People Upset?


One of the most important things I have learned as a parent to autistic children is the value of listening to autistic adults. As a person who is not autistic, listening to autistic voices is essential as they can give me an insight into my children's lived experience that I cannot gain anywhere else. As K, from Radical Neurodiversity Speaking says:
The first thing you need to do isn't find therapists. It isn't commiserate with other parents. It isn't become an AAC expert (though all of these things have their place!). It's something not in the autism introduction packet: you need to connect on a human level with adults like your child. You need to go make some Autistic friends.





I agree with all of K's reasons too -- autistic people are awesome to hang with, loyal friends who care deeply about their friends. My kids benefit from me being tapped in to autistic culture, and will more easily have access to role models themselves if I have autistic friends. If I don't introduce my children to autistic adults, how will they meet others like them? But don't just take my word for it, read what K says for yourself,here.
Because I value the voices of autistic people as a way of supporting my children as they navigate life in a world not made for them, when I hear my autistic friends say they are upset about something I want to know why.
Recently, my friends have been telling me they are upset about the partnership between Autism Speaks and Sesame Street to promote acceptance of autism as a form of diversity. Sesame Street is really good at promoting diversity. The reason my friends are upset is not that Sesame Street wants to focus on autism -- it is that Autism Speaks is involved. And I think they have a point.
I have written previously about Autism Speaks here and here.
The key issues I have with Autism Speaks are that:
  1. 1. they claim to represent autisiic people, but have no autistic board members;
  2. 2. they put more of the money they raise in the name of helping autistic people into researching to eradicate autism, and therefore autistic people, than they do actually helping them (in fact, they pay themselves more each year than they put into helping autistic people); and
  3. 3. they convince people to donate to them by sending out a message that Autism is a tragedy, burden and disaster that ruins entire families lives, and that Autistic people and their families are constantly suffering and barely living.
I, for one, do not want an organization that aims to get rid of my kids neurologies helping with a project that is designed to promote acceptance of autism. My friends don't want Autism Speaks speaking on their behalf in this way either. They are justifiably upset. And they are speaking up for themselves to let people know they are upset.
Sesame Street, this is an Autistic speaking.
Don't partner with an organization that silences us. 
We are proud of who we are and we want all kids to feel this way.




Lei Wiley-Mydske explains:
I am an autistic parent to an autistic child. I grew up watching [Sesame Street], and my son has too. I encourage you to end any partnership with Autism Speaks if you wish to truly celebrate diversity.
I would be THRILLED to see autism portrayed on your show, but not when the message is one of despair and fear. Or one that would pretend that disability is shameful.
In developing this project, please remember that autism is not something we do to our families, or our communities or anyone else. Autism is how my brain works and interprets the world around me. Our stories deserve to be told with US doing the telling. Not with someone else speaking for us. Again.
Please don't allow a group like Autism Speaks continue to dominate the conversations about autism. They do us harm. You do us harm when you partner with a hate group who wants to prevent people like my son and I from existing and spreads harmful and dehumanizing rhetoric about us.











There are others speaking up too. Not just autistic people, but parents of autistic people and friends of autistic people. There is a whole movement dedicated to addressing this problem. If this is an issue you would like to help do something about you can find more information at Boycott Autism Speaks Facebook Page. On Twitter check out hashtags #BoycottAutismSpeaks and #EducateSesame You can also sign a petition to Sesame Street here.

Tuesday, June 17, 2014

Autism, Stigma and Murder: a repost



Note: I wrote this article on 25th April 2014, and it was originally published at The Huffington Post.  It is  similar to an article I posted on Different kids of normal, but written specifically related to Autism.  
Trigger warning for discussion of murder of disabled children, and discussion of the stigmatisation of Autistic people.
April. Autism Awareness Month. And another murder. Sixteen-year-old autistic boy Robert Robinson was murdered by his mother, who then killed herself. News reportssay she couldn't cope with her son's allegedly violent behavior and the lack of support she had in caring for him. So they sympathize with her. They encourage us to feel sorry for the woman who murdered her son. They want us to pity her and justify her ending her child's life by blaming her stress on him being autistic and his "violent" behaviour.
There have been other children murdered by their caregivers over the years. Too many to name.
How do we get to this point as a society? How is it OK to learn that a child has been murdered by their parent and then feel sorry for the murderer?
Are you familiar with the term "stigma"? 
stigma
noun
shame, disgrace, dishonor; stain, taint, blot, blot on one's escutcheon, blemish, brand, mark, slur
How about "stigmatize"?
stigmatize
verb
condemn, denounce; brand, label, mark out; disparage, vilify, pillory, pour scorn on, cast a slur on, defame, discredit
There are lots of things that people can be stigmatized for. Some stigma is quite subtle, falling into the "label" category, some is more obvious and in the "denounce" category, and some really noticeable and easy to see as vilification. 
Here's what someone said to me last year when I told them I have two autistic children:
"Oh, no! So what do you do? Are they like real members of the family?"
The reason people feel sorry for me when they find out my kids are autistic is that they don't know anything about autism except that it makes them hard to live with. They know this because the media tells them.
And this is what I'm talking about when I say "autism awareness" doesn't help autistic people, and that the media has no place blaming autistic children for their own murders.
So instead of listening to the facts being spoken by autistic people and their allies, people listen to the media tell them that autistic people are violent and difficult to live with. So society moves down the slippery slope of assumption until it reaches the point where vilifying children based on a diagnosis is acceptable. 
Did you know there are autistic adults all around you? They are working as doctors and nurses, teachers, ambulance officers, cleaners, artists, writers, professors, journalists, pilots, executives, actors, sportspeople, good parents. But many of them don't tell you they are autistic because they don't want to be stigmatized.
When they were younger, they were kids who were just like Robert Robinson and all the other children who have been murdered by their parents for being autistic.
Some were nonverbal as children, some still are nonverbal as adults and are making significant and valuable contributions to society as writers and poets, and some were labeled "violent" as children and are now working with children like them as their mentors.
So why do the media report on murders of autistic children by blaming the children and sympathizing with their killers?
Well, basically, they do it because it sells. 
People want to hear that story. It gets ratings. They do it because the public wants to hear it. And for that we should all be ashamed. We are encouraging the media to help perpetuate the stigma against autistic people.
We accept these stories without batting an eyelid because we have already been primed to believe that disability is bad and we don't bother to question it.
When we sit quietly by and listen to this discourse, we are complicit in the murders of innocent people. 
When we sit silently and fail to question the assumption that mental illness or disability is the cause of violence, we support the media in their continued assault against people like my children, who just want to do what they need to -- and receive the supports they require -- to live their lives as productive and happy members of society. 
Are you happy to let Robert Robinson's death be blamed on him being autistic?
Are you happy to be part of the continued stigmatization? 

Tuesday, April 29, 2014

[Amazing Adventures Autism] Expressions of PosAutivity: #AutismPositivity2014

A letter to MissG

When you were a baby we paid close attention to learn your cries. We came to recognise when you were hungry, when you were tired, and when you were overwhelmed by your surroundings. We didn't need to hear words from you. Your cries spoke to us and we listened. We did our best to meet your needs, even though you couldn't speak them to us.

When you were a toddler and you would fall over or find yourself hurt, you didn't want me to touch you. I longed to give you a hug, to rub your back, but you would push me away. You were teaching me that I can show my support and love without touch. All you needed from me was to be present and wait for you to be ready for my touch. And when you were ready, the snuggles were priceless.

When you started to want to play with others but things didn't go well you would scream out. It was hard for your brothers and sisters to listen to those shrill screams sometimes. Your dad and I tried to help everyone understand that you couldn't find words when you were stressed. We tried to help you by giving you phrases like "stop, I don't like it". Slowly, you found your voice, and we were so careful to listen when you used those precious words. If you said stop we stopped, even if we couldn't tell quite what the problem was, because you were telling us with the only words you had that something did not feel right. You taught us your need for control over what happened to your body and how important it was for us to respect that.

When you are frustrated and overwhelmed you can't speak to me to explain why. It can be so hard to see your pain and not know how to help. But you taught me that compassion does not always rely on knowing the specifics of a situation. All you need from me is that I be present with you and wait until you are ready to explain. 

Now you have started to be able to draw me pictures of what troubles you. I love those pictures. They are as much your voice as spoken words are. They tell me you want me to know, that you value my support, and that you believe I can help. 

As you get older, I wonder if you will begin to type to me as your big brother does when he has lost his words, but I know it doesn't matter whether you do or not. You will still always let me know what you need in your own way. And I will always be listening. 



This article is part of the 2014 Autism Positivity Day Flash Blog



Sunday, April 27, 2014

What I hear when you have compassion for parents who murder their children

OK world, let's get something straight.  You need to know what I hear when you sympathise, empathise and otherwise have compassion for people who murder their children.

When you say "oh the poor mother, she must have been so stressed, she had no support, I feel sorry for her, I can understand why she killed her son", I hear you saying to me:

"If you kill MasterL or MissG, I will feel sorry for you."

That is wrong. It is so wrong it makes me sick to my stomach.

I also hear you say that their lives are less valuable than my other children's lives. I hear you say that my life is more valuable than their lives. I hear you say that because they are not "normal" they can be disposed of and that would be understandable.

I'll say it again. That is wrong and it makes me sick.

I know that is not what you think you are saying, but it is what I hear.

And when you try to shame me for not having compassion for a murderer by asking me if I know for sure I would never kill my child.....  I have to walk away from my computer for hours, and am unable to eat for that whole period of time because I feel so nauseated.

When you make excuses for parents who murder their child by saying "oh, they must have been mentally ill" my skin crawls.

What I hear you saying is that my husband, who is Bipolar is more likely to kill our kids because he has a "mental illness", when in fact the research clearly shows he is actually more likely to be bullied by you and discriminated against by you than he is to ever hurt one of our kids.

So, you know what? Shut up the lot of you. Close your mouths and really have a think about what you are saying, what you are implying, and how your words impact other people. Every time you make comments like these you help to increase the stigma against my whole family and you endanger my children's lives.

Friday, April 11, 2014

Speaking my truth

During #AutismAcceptanceMonth is a good time to talk about Autistic safe space. This is incredibly  important information for people to understand.  Please read this article from Cynthia at MusingsofanAspie.

So often when looking at Facebook pages and websites about Autism, I see parents talking about the importance of sharing their experience with the world. They argue it adamantly, over the top of all other voices, stating their right to free speech, their right to be heard, their right to support. 

I've been struggling with this because I do believe that everyone has a right to speak their own truth, but I have trouble reconciling that belief when I can see a persons words damaging others. I see some people trying to silence others because their truths don't match up.  

Reading Cynthia's article today helped me clarify some thoughts I've been processing and I'd like to share those with you. 

Cynthia says, 

"I think of autistic safe space as a kind of middle ground, between autistic friendly space and autistic space. There isn’t necessarily a clear definition of each of the three, but for the sake of helping people new to these concepts understand them better, I’ll take a stab at describing them.

Autistic friendly space tends to be predominantly allistic space which has been modified to make it more welcoming to autistic people. For example, sensory friendly film showings or an event that features flapping instead of clapping, is held in a hall without fluorescent lighting, requests attendees to be fragrance-free, provides communication badges, has a quiet area and does not allow flash photography.

An autistic person isn’t necessarily going to feel totally comfortable in autistic friendly spaces, but there are considerably more accommodations made than in the typical public space.

An autistic safe space takes the concept of autistic friendly space one step further, putting the autistic person’s needs first. Often safe space has a greater emphasis on safety with regard to identity and expression whereas friendly space has a greater emphasis on disability accommodations.

Online, autistic safe spaces are very much about safe speech. In person, the concept is extended to physical expression, meaning that things like stimming and atypical communication are welcomed and accepted rather than simply tolerated. Safe spaces are often a place to explore difficult topics and push at boundaries without the fear of rejection or humiliation.

Autistic safe spaces can be mixed spaces, but are generally autistic led. Sometimes this works out really well, with people of different neurologies sharing experiences and learning from each other. And sometimes it turns into a disaster. I’ve seen both cases firsthand and, ironically, when things go wrong in a safe space, people can be hurt badly. Much more so, it seems, than when things go wrong in typical public spaces.

Finally, there is autistic space. I was going to define autistic space as one in which all participants are on the spectrum, but then I realized that my home is autistic space. It’s a place where I feel completely comfortable to be myself and where my communication style is honored. It’s a place where I have minimal sensory distraction. A place where I know what to expect.

Perhaps autistic space is a cultural construct rather than something that is created strictly by the neurology of the participants. And that feels like an idea that’s too large to get into in the final lines of a post, so I’m going to set it aside for another day."

This is something I work hard on here at Amazing Adventures parenting Autistic children.  

To be honest, as a non-autistic person, I am unable to keep this page as Autistic space, or even Autistic safe space.... because I do not know what it is like to be Autistic, and therefore cannot always anticipate what will make a space unfriendly, but I am learning. I am trying to do better than just having an Autistic friendly space, but it will take time and more learning. 

To that end, I do my utmost to keep my blog and my page Autistic friendly space. You may from time to time notice that a comment has been deleted, or that I do not repost some things shared on my page. This is because they are things I know from having spent time with and listening to Autistic people that those things make a place unsafe. 

And, as Cynthia says, there are some things that will always be completely unacceptable. You will never see me speak about my children making my life harder. You will never see me supporting the "Autism is a tragedy" message. You will never see me favouring the voices of non-autistic people over Autistic people on the topic of Autism. 

There are three reasons for this. The first is that to do any of those things would hurt my Autistic friends. The second is that assuming doing those things would hurt my Autistic friends, I also assume it would hurt my Autistic children. I am not prepared to do either of those things in order to make myself more relatable or readable,  to increase traffic to my blog or page, or to fit in with the status quo. The third reason is that I value my integrity, and I will not speak things that are not true for me. My truth is important to me. 

I will always speak my truth unapologetically.

And the truth of my life is, it is hard. 

Parenting is hard. But that is not my children's fault.

Being a wife is hard. But that is not my husbands fault.

Being a student is hard. But that is not my teachers fault.

Being an advocate is hard. But that is not your fault.

It is just life. It is how it is. This is fact. 

My life is my responsibility. I have chosen everything in it. I continue to choose everything in my life everyday that I don't walk away from it all. It is hard. It is mine. 

And my truth is that even if it is hard, I do not choose to walk away to something easier, therefore I will not complain to you how hard it is.  

Some will say that not telling how hard things are all the time makes me inauthentic, unrealistic and a phoney. Some will say that it is important to tell the struggles so that other parents know they are not alone. Some will say that failing to acknowledge the difficulties publicly invalidates the experience of others. 

I say that insisting I do all those things would make me inauthentic, leave me isolated from those who share the same experience as I do, and would invalidate my experience. 

Our truths do not align. Yes, they are entitled to speak theirs. When they are individuals I do not go into their space and tell them they are wrong. I simply avoid their space (this changes for me when the person speaking represents an organisation, but that is not what I am talking about here).

I do not live a life so difficult that is is miserable. I do not need to hear each individual story to know there are others out there who find things tough. I do not need to hang around with people who want to focus on the hard stuff. I do need support from those who are trying as hard as I am to remain positive and proactive. 

I will always speak my truth unapologetically.

I hope that other individuals will respect my right to speak my truth, and rather than stepping in to my space to educate me, they will simply avoid my space. 

In my space I will continue to speak my truth unapologetically, and I will do everything I can to keep my space safe for my Autistic friends and family members.




To my Autistic friends, I am sorry. 

I am sorry that all too often you have to deal with spaces that are not Autistic friendly, let alone Autistic safe.  

I am sorry that I sometimes let you down. 

I am listening, though, and I hope I am learning enough to improve in this area. 

I want to thank you- for being patient with me, for being open with me, for teaching me when you have no obligation to. 

Thank you. 

You are all making such a difference in my life, and in the lives of my children. 

I will do whatever I can to make this space safe for you, and for my kids. There are so many places that I know you do not feel safe in. I hope this is a place you can come and feel heard and be safe.