Saturday, July 19, 2014


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.