Grieving Autism Accepting Autism

I was asked recently if I am worried BabyR will be Autistic. The question stumped me for a minute. I felt like I was expected to say yes. I wanted to say no. In reality my answer would have to be "it depends".

When MissG was diagnosed I grieved. I sought a diagnosis for MissG because of problems she was having. Problems with communicating and in social situations. Problems due to sensory overload. Problems caused by my expectations of how she should behave.

The reality is my grief was based on my own false expectations. On what I thought society wanted from me and my child. On what I thought I was losing, based on what media and health professionals told me about Autism.

But I now realise that I didn't know anything about Autism. About its creativity. Its persistence. Its resilience. Its beauty.

I am not worried that my child may never speak out loud. I am not worried that he might have some challenging behaviours. I am not worried that he may have difficulty processing sensory information. We have 2 Autistic children already and we know how to support them. What we don't know yet, we will learn if and when we need to. The fact is that parenting any child, Autistic or not, presents its own set of challenges and requires learning new skills and ways of thinking. I am not worried about facing those challenges.

I am only worried that if he is Autistic he will face bullying, discrimination and stigma.... that people will not accept him for who he is.  That he could grow up knowing that in some peoples eyes he will always be less.... broken.... inferior.

But not to me. To me he will always be just fine as he is. His neurology does not make any difference to me. I love him. I will not be disappointed if he is Autistic. Sure, it would mean another intense parenting journey. Sure, it would mean more work finding the right supports for him. Sure, it would mean more learning. But why would that be a problem? He is my son. I would do anything for him. Just as I would for any of my children. Just as you would for yours.

I am not the only parent of Autistic children who feels this way.

"We cannot afford for the focus of Autism be about parental grief.   Our anger and our sadness and our grief need to be directed at the targets which are worthy of it.  Those targets should be the ways that Autistic people are disabled by their environments.  And we need to attack those targets with ferocity.  To disable the environments which keep Autistic people from thriving."          

from love explosions

"When I try to imagine how my child feels about life, I take my childhood and try to imagine my life minus those experiences. But that's a fallacy. Anytime I try to subtract my experiences, I will feel a sense of loss. That same sadness happens when I imagine what I think is a "normal" childhood, an ideal childhood, that comes with a list of all the experiences a child needs for a great childhood. Karate, Valentines, kindergarten, music lessons, ballet, team sports, schoolmates, formal dances, first car, spring break, college visits. Any missed experience means that I have to cross that item off his list. A missed experience means a less-than- ideal childhood. Always. For any child. It's a flawed paradigm.

This paradigm is the same one that causes us pain when we think certain children with certain qualities are "Normal" and any difference is "Not Normal."  It can only set us and an entire group of children up for isolation.

Children with a disability do not have a life minus. They have a life period. It's their life. It's not some other child's life, the parent's life, or their peers' life. It's their life.

A complete childhood has nothing to do with specific experiences. A complete childhood does have certain qualities: connectedness, optimism, playfulness, a passion for things that interest them, a feeling of proficiency at things they want to do, and a feeling of being loved wholeheartedly for who they are right now.  That list is the one that matters."  

from Mama Be Good

Autistic adults have spoken out about grieving Autism too.

"You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you."

from 'Don't Mourn for Us' an article by Jim Sinclair 

Look at this picture. How could anyone honestly ask me if I am worried this baby will be Autistic like his older brother? Look at them! How could I be worried when my Autistic son is a strong, intelligent, persistent, brave, tenacious, caring, funny, generous and thoughtful young man who has big dreams and expectations for his life?

Why would I worry about having 2 sons like that?

This is Autism Acceptance

You might not have realised it if I hadn't pointed it out, but these photos are of Autism Acceptance.

Acceptance- the process or fact of being received as adequate, valid, or suitable

My MissG started Kindergarten this year. We did a lot of preparation for this, because MissG is Autistic and has Sensory Processing Disorder. We worked with the school to help MissG get used to the routines of the school, gave her practice being in the classroom, and moving around the school in a group, playing in the playground with lots of other kids darting around..... things like that. We focussed on her own safety by teaching her a procedure she could use when she is feeling stressed or experiencing sensory overload so she could go to a "hiding place" where she felt safe and could wind down a bit. We made sure she knew the ladies who work in the office because they are the ones who look after kids who need first aid. We made sure she was totally comfortable with The Principal because he would be the person who would intervene in an emergency. We made sure she knew who her classroom teacher would be and got to know her, so there would be no anxiety about who she would be with. [search "transition to school" using the search function at the top right of the blog if you want to read about the preparation we did]

We did all this with the willing help of the school, who showed us by their actions that they accepted MissG just as she is and are happy to welcome her into their school and do whatever she needs them to do to make school work for her.

And the school has continued to show that they accept MissG and do not expect her to change to suit them. I know this because of the conversations I have with her Lovely Teacher when we check in with each other to make sure everything is going well. I know that when MissG is struggling her Lovely Teacher makes sure she has extra time to process things, and that she is teaching the other kids in the class to do the same. I know that MissG's Lovely Teacher makes an effort to give MissG plenty of warning for transitions and when the usual routine has to be changed. MissG has her own special drawer in the classroom where she keeps some fidget toys and comfort items she can go to if she needs to do something to calm herself.

MissG's Lovely Teacher, The Principal, the Office Ladies and all the other staff in the school value my daughters uniqueness. They let her be who she is. They encourage her. They are proud of her achievements. The see her as adequate. They *accept* her.

I know this because of what happened at the Easter Parade. I posted the above photos so you can see it too.

That is MissG. Dancing. With a partner. In the middle of a group of about 80 children. To loud music. Without her ear defenders on. With a huge smile on her face.

See her? My Autistic daughter? Dancing! With a partner! In the middle of a group of about 80 children! To loud music! Without her ear defenders on! With a huge smile on her face!!

The same girl who 12 months ago could not go shopping with me without having to run away and hide to get away from the overwhelming sensory input. I stood and watched her in that huge group of kids, enjoying herself. Feeling safe. Being confident. And I cried. Happy tears.

I know that the school staff accept my MissG just the way she is because I stood next to one of the Office Ladies during the parade and she said she had been looking for MissG and was so happy to see her enjoying herself even in the middle of the bustle and the noise. I know that her Lovely Teacher values MissG just how she is because she was almost as teary as I was about how well MissG did during the parade. I know that the community we live in accepts my MissG just the way she is because a few people saw me with tears in my eyes and when I told them what they were for they cried happy tears too. They put their arms around this Autism mum and they shared my joy.

My daughter has found a place where she feels safe enough to just be herself and dance.

This is Autism Acceptance.  

Best Australian Blogs 2013

On the right hand side of this blog you will see two blue buttons. They are there because I have entered the Best Australian Blogs 2013 Competition. There is a judged category and a Peoples Choice Award. I have also entered my post 'An Open Letter to Members of NSW Parliament' in the Outstanding Advocacy Post Category.

If you would like to support me by voting for Amazing Adventures in the Peoples Choice Category, please click on the button that says 'Vote for me now'. It will take you to the Australian Writers' Centre website survey that allows you to vote. All you have to do is follow the prompts. All the entries are listed in alphabetical order, so just find Amazing Adventures, then keep clicking through the pages until you get to the end. Your vote is counted after you press the 'done' button.

Thanks for your support.

Awareness vs Acceptance

Being aware of something is quite different than being accepting of it. 

Awareness- knowledge or perception of a situation or fact

Acceptance- the process or fact of being received as adequate, valid, or suitable


"Awareness says the tragedy is that I exist as I am. Acceptance says that the tragedy would be trying to make me any other way",  Kassianne of Radical Neurodivergence Speaking wrote, in an article published by ASAN. You can read the whole article here (and you probably should read it as Kassianne has been thinking about, and living with, the issue of awareness vs acceptance a lot longer than I have). You may agree or disagree with her that her statement is true. But the fact is, that all Autism Awareness campaigns have achieved for Autistic Adults in many cases is to help them feel that "normal" people see them as wrong. 

I have a 14 year old Autistic son, who is rapidly approaching adulthood. There are many things I want to help him achieve. There are also many things I want to avoid as I support him navigating life. One of the things I most want to avoid is him thinking that I believe he is not good enough just as he is. I am very aware that one day he might read everything I have written in this blog. If he does, he will see the posts I wrote last year in April for #Autism Awareness month. They were a series of Question and Answer style posts. No doubt if I were to sit and write them again now they'd be a bit different, as I have learned a lot in the past year, and my attitudes have changed in some ways. Life is, after all, a journey.

He will also one day read the things I will write this April.  He will probably notice that this year I will not be using the phrase #Autism Awareness. 

Along with many other bloggers, I will be calling April #Autism Acceptance Month.

If you have time, read this article by Steve Silberman at NeuroTribes for an explanation of why- it is long, but really, really worth it. Steve has written thoughtfully and insightfully on this topic, and includes interviews with many wonderful Autistic Advocates (some of whom I am immensely grateful to have been given the opportunity to get to know online recently). I could write pages of my developing thoughts on this topic, but it would still just be the thoughts of a parent of Autistic children, and what you really need to hear is what Autistic Adults think and feel about Awareness and Acceptance. So, please do read Steve's article. If you can't make time to read the whole article, just read the next bit here, which is taken from it:

Two years ago, [Paula] Durbin-Westby proposed that autistic people and their families and friends recast April 2 as an occasion for promoting acceptance and understanding rather than vague “awareness,” and reclaim the day as an annual opportunity to celebrate their community’s diversity and vitality. ”I started Autism Acceptance Day as a corrective to the ubiquitous negative images we see every April,” she recalls. “The first World Autism Awareness Day referred to autism as an ‘equal destroyer.’ From videos that talk about autism as some sort of soul-sucking demonic persona, to 150 empty strollers signifying that autism has robbed parents of their toddlers, navigating April for many Autistics has been like walking through a field of (stroller-shaped) land mines. No more! Autism Acceptance Day takes back April and puts it where it belongs — into the hands of Autistic people, supportive family members, friends, and communities.”

Durbin-Westby’s notion of rebranding April 2 in a more positive and proactive light is catching on with local autism advocacy groups worldwide. The Autism Society of Northern Virginia recently declared April to be Autism Acceptance Month, and other groups are getting onboard via social networks like Facebook and Twitter.

Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults  – now, starting today?

That’s the question I posed to a group of self-advocates, parents, and teachers that included Nick Walker, an autistic aikido master who founded his own dojo in Berkeley; the first openly autistic White House appointee, Ari Ne’eman; Emily Willingham, one of the sharpest science writers in the blogosphere; Lydia Brown, a prolifically articulate and thoughtful 18-year-old self-advocate at Georgetown University; Todd Drezner, director of Loving Lampposts, a groundbreaking documentary on autism and neurodiversity from a father’s perspective; and the editors of Thinking Person’s Guide to Autism, which is my personal recommendation for parents to read after their son or daughter’s diagnosis.

Throughout April this year I will be posting stories about Autism Acceptance. Sometimes I will quote others who have much more experience in this than I do. Sometimes I will talk to you about my children. Always I will be celebrating Autistic people and their achievements. I will be talking about the difference between awareness and acceptance, and the impact the two can have on Autistic people. I hope you will join me this April for #Autism Acceptance Month.

I am still thinking about Every Student Every School

Yes, I *am* still thinking about Every Student Every School.

This is because it is still affecting my sons education.

For those of you who are new to the blog you might need to do some reading of older posts to understand exactly what I am writing about here. You can do this by using the search function at the top right of the page and looking for "Every Student Every School".

The short summary of the situation is that last year our state government decided that a good way to save money in the education system would be to remove most individually allocated disability support funding.

MasterL used to be allocated individual funding that allowed him to receive teacher aide support in his mainstream high school classes. The funding is now gone, so he does not get the support he needs.

Last year the school was able to minimise the impact this had on MasterL by fiddling with some existing funding. This year they can't do that anymore. I knew that would be the case, so I wasn't surprised when MasterL started to say things like "maths is too hard" and "I don't want to go to school today".

So when I met this week with the High School Principal, and then the Learning Support Unit Co-ordinator, to chat about how things are going this year I found myself in the position of - once again- having to sell my child's so called deficits to them in order to get some action. I have to use phrases like "communication impairment" and "selective mutism" and "inability to read social situations", instead of talking about how smart and funny and persistent and kind and creative he is.

I HATE having to do that.

And even after doing that, the reality is that there still just isn't the funding available to provide the social and communication support he needs at school. And again I am left with the unsettling feeling that people believe my son being given the opportunity to achieve his dreams and desires and reach his full potential is less important than other people being given the same opportunity. And that makes me angry because it is not fair.


He is just as much worth investing in. He has just as much potential to make significant and valuable contributions to society as anybody else. Failing to support him adequately simply for lack of willingness to provide a few extra dollars a year for his education is discrimination. I could go on and cite studies that prove financial expenditure now on education will prevent greater expenditure on welfare later, in an effort to convince the politicians. But really, why bother? They aren't going to change their policy. They are not interested in fairness or justice, they are interested in saving money in the short term so the majority will vote for them in the next election.

And frankly, my energy is better spent being there for my kids right now, when they need me, than repeatedly head-butting a system that doesn't care and won't change.


*I have used two images in this post that I have seen on Facebook, but I have been unable to find out who they images were originally made by. If they are yours or you know where they came from please let me know so I can give credit to the creators. Thank you.

I am a poopy pants

Today MissG called me a poopy pants. I was so proud!

For months we have been saying "use your words" to try to help MissG learn to speak about her frustrations. She has been using a variety of strategies to avoid doing things she doesn't want to, or to let people know she is unhappy about what they are doing. She has tried hitting, pushing, running and hiding, crying loudly, and most recently completely ignoring the person (usually me when I ask her to tidy her own mess).

Today I asked her to put some clothes back into a clothes basket.

She said, "it's too hard"

I encouraged, "just do one thing at a time"

"I don't want to"

"I know, but if you do it quickly you can go and play again"

"You are a poopy pants"

OK, so maybe a different choice of words will ultimately get her further, but hey- this is progress. She engaged with me verbally when she was feeling stressed. I didn't once have to say "stop ignoring me" or "use your words".

I suggested she go and sit on her bed (her safe hiding place) for a minute to calm down then come back and have a go at putting the clothes in the basket.

"Fine" she said as she went to her bed.

She did calm down. She did come back and all the clothes were in the basket very quickly. She went and played on her iPad. Later on today she even put away some of her soft toys without any resistance.

I seriously never thought I'd think being called a poopy pants by my 5 year old was a good thing, but what did I know about real life anyway?! This is so much more fun and interesting than I ever expected!

Autistic People Are....

Last weekend there was a flashblog called "Autistic People Should" which was run by a group of Autistic bloggers in response to the fact that a google search on the words 'Autistic people should....' provided some horrific autofill responses. 
As a result of this flashblog Google has promised to undertake to change the autofill results to this particular keyword search! 
Yay for Autistic Activists! What a great result! You can have a look at the flashblog here-
http://autisticpeopleshould.blogspot.com.au/

This weekend the same group of bloggers are putting together another flashblog for the same reason, but this time with the key words "Autistic people are". Check it out here- http://autisticpeopleare.blogspot.com.au/

I am not going to show you what google autofill suggests people look at when they begin their search with "Autistic people should" because it is distressing. However, to give you an idea of the kinds of things that show up as autofill search options currently here is a screen shot of what happened when I typed in "Autistic people are"

I'm no expert on Google and how its searches work. I've heard people say there are complicated algorithms, and others say it just spits out what people put into it. Whatever the explanation is, it is completely unacceptable that these are the first three things that are suggested to me to look at when I type in those three words. So, I am taking the time to add my voice to the voices of my Autistic friends and fellow bloggers, by writing this post.

I know quite a lot of Autistic people these days, and I'd like to share with you what they are to me. 
I'd love to see some of these words suggested by Googles autofill prompts.....

Autistic people are

children, adults, children fast approaching adulthood, brothers, sisters, fathers, mothers, husbands and wives, girlfriends, boyfriends, partners, lovers, grandparents, aunts and uncles, cousins,
friends

students, teachers, professors, office workers, artists, business owners, software developers, accountants, researchers, inventors, bloggers, advocates, experts 

karate students, soccer players, abseilers, runners, swimmers, bushwalkers 

video game developers, chess players, collectors of all sorts of things 

story tellers, joke tellers, truth tellers

worth listening to, worth spending time with, worth getting to know, worth respecting

loveable, loving, loved