Shoes and humanity

My (early) contribution to the ‘Walk in our shoes’ flash blog

“Every time media reports about the abuse and/or murder of an autistic child, we are told not to judge. We are told to walk in the perpetrator’s shoes. Most of the time, the perpetrator is the autistic child’s parent.

But we have shoes too, and no one ever asks anyone to walk in the victim’s shoes. This flash blog invites people to walk in our shoes for a change.”

I’m tired. In so many ways and for so many reasons, I am tired. Today, I feel tired because I had to repeat myself again.

I carefully crafted my words (to the best of my ability), I researched statistics (to back them up), I tried to refine a logical explanation (as concisely as possible for your convenience) and I even told you how you made me feel (I’ve heard that helps?!).

I’m tired because I feel as though I’m wasting my time, my creativity and my hope for acceptance on you. Hopelessness is exhausting.

Why can’t you understand?

Maybe ignorance and denial is more comfortable. Majority opinion means majority support.

Maybe you disregard us as haters or PC police, without a second thought (I am not a troll and I am concerned about the well-being of others).

Maybe you think I am minimising your experience as a parent of an autistic child (there were times I really wasn’t coping as a parent and I sort help for ME. I did not abuse my autistic children when I wasn’t coping).

Maybe you want someone to blame for the wrongs of the world; a convenient ‘other’.

Maybe you have been responsible for more than your ‘fair share’ of oppression (there is no ‘fair’ share) and shame prevents you from further growth and connection.

Maybe you can’t handle the idea of being wrong. We all make mistakes, we are human.

Maybe you are missing a deep enough understanding of ableism, intersectionality and oppression. Please read about these concepts and keep reading.

Maybe empathy is not your greatest strength (not your fault) and you refuse to believe in anyone else’s experience besides your own (meet more diverse people, go where you haven’t gone before and do what you haven’t done before or read books and blogs. Learn to trust.)

You can never truly walk in my shoes.

Perhaps it’s more helpful if you work on the basics of your humanity: trust, vulnerability, acceptance and connection. But don’t apply your humanity without care because it’s the oppressed that need your support the most and abuse is never justified.

 

The last man standing

Munch, crunch, slurp, burp! That is what I have learned in the past month or so. I’ve been volunteering, for a couple of hours a week, at my sons’ primary school. In particular, I’ve been given the task of helping a student with her writing but I strongly doubt that I’m actually helping.

It turns out that you learn, at the age of 7, how to engage your readers by starting with action words and clues, to some dramatic event. My student’s narrative was titled ‘Mr Mac ate me’. I find this ironic because a year or two ago, I attempted to write an Autobiography (just because anyone can, right?!). I went as far as to source an experienced author to look at a draft of the first few chapters and she was honest with me. She tried to be constructive in the short time she could spare a complete amateur in her busy schedule by telling me the exact same thing those 7 year olds are being taught right now.

I was also told that the story of being Autistic is no longer unique. We are too normal to publish it seems. Oh the irony! The third and final nail in the coffin of my Autobiography (besides not being able to write and being boring) was that I didn’t want to jeopardise any relationships that I have by being truthful about them and without the truth (or more accurately the truth the way I see it) the most interesting parts of my life can’t be told.

And now, I have a conundrum. My most recent blogposts have taken on a different angle because I feel I can no longer blog about the most interesting people in my life, my Autistic sons. Given that my sons’ truths are different to my truth, is it right for me to interpret their experiences and share them with everyone (even for the sake of sharing what I have learned)? Is it fair to them? Is it empathetic to them?

A cousin of mine recently said to me “I miss all those Facebook posts about the funny things your boys say and do. I used to show my friends and they thought they were hilarious”. I wouldn’t have been comfortable with my mum sharing stories with some of her friends, about the funny things I did or worse the personal awkward things and the upsetting things (closer friends I would have been ok with if discussed respectfully).

Maybe there is an age limit where the private stories stop, like when you stop taking nudie pictures of them playing in the bath or something. Maybe, I shouldn’t have started at all. Anyhow, from now on it stops and you are left with just me.

Hi!

(P.S. I’ve reinvented myself on Twitter @rachelmcnamar15 as a retweeter of the writings of others on all sorts of social justice issues. Don’t follow me unless you are seriously interested in social justice and keep in mind that many posts are Australia- specific)

“caregiver burnout”

This blog post by Love Explosions covers an important concept of parenting that is not unique to parenting autistic children and it does so brilliantly. Given that I have not covered the topic of self-care anywhere in my blog, I thought I should share it.

love explosions

"Caregiver burnout" caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member “Caregiver burnout” caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member

I dislike the term “caregiver burnout.”  To me, it carries a very negative and connotation about the person being cared for.  It also seems to imply some sort of culpability on the person under care which makes me super uncomfortable in a way that I cannot articulate.

It makes me so sad to see people using this term to describe themselves and all that it implies about their Autistic children.  And families.  It makes me sad that these stories of hardship dominate the conversations about Autism because it gives the impression that there is no alternative to this way of life–to this emotional state of being when you’ve got an Autistic family member.

The…

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to the autistic people in the crowd

It was a call for autistic people!

It was a call for autistic people!

In my last post ‘Autistic Voices’, I almost congratulated our State organisation’s (AMAZE) attempt at promoting autistic voices in their ‘SPECTROSPECTIVE’ movie project. I barely discussed that several of the videos submitted and shared were from a carers point of view and sacrificed the dignity and privacy of their autistic children (such as Addie’s video here http://www.spectrospective.com.au/gallery-4.html#). It was disappointing that those few videos compromised the message but I was so used to it that I accepted it as inevitable. However, just today I read this blog post by Jess from ‘A Diary of a Mom’ and I realised that AMAZE could have done better. AMAZE called for autistic voices (stories of autism from an autistic persons perspective) so they should have been the only videos shared. Neurotypical people should not be hijacking our voices. Neurotypical people already get most of the attention on the discourse of autism. Neurotypical people could learn from Jess. I could learn from Jess. Keep spreading your words Jess and amplifying ours, we need allies like you 🙂

a diary of a mom

I had made a decision. Before I said anything else, I would say this. Even if it were technically only addressed to 3 out of the 240 people in that room, it mattered. And it mattered that the other 237 hear it.

This is what I said.

I did my best to transcribe the words (below) for those who find auditory processing challenging. Any errors are wholly unintentional.

Thank you so much. Thank you for having me here to all of you and Lisa and Maeghan for all of the incredible that work you’ve done here. I hope you guys can take a minute now that you can breathe and appreciate what you’ve done. This is some pretty amazing stuff. Above all, thank you for ensuring that I am sharing the stage with Michele [Gauvin} who will speak for a few moments later. That’s Saturday, April 4, 2015

” target=”_blank”>really important stuff.

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Child’s play

We love a game of cards

When the air is full of tension, when the frequency of fights begins to overwhelm, when you are not feeling so much love towards the behaviour of your children it is a wonderful time to stop whatever it is you are doing and play with them. But boy am I glad the days of imaginative play are over because now I can play a game of cards with them, play a board game, play poison ball on the trampoline or even just cuddle up on the couch and watch a kids movie together. All you need to do is spare the time and the results will save you time in the long run (reducing time spent disciplining them).

When I start playing with my boys I notice the smiles and laughter, their behaviour improves by a multiple of ten and my own blood pressure drops and mood improves. Big events like a family bike ride, baking (it’s big for us) or outings do not often achieve the same results for us because they present triggers for anxiety. Such activities are more rewarding when planned in advanced and well organised for a time when we are all fresh and energetic.

As for imaginative play, my children and I have autism and many health professionals have recommended that young children with autism be extended in this area because imaginative play is something that people with autism are proposed to lack in, although the results of imaginative and pretend play are variable among people with autism (Woodard 2011). I can see the value of imaginative play as being like role-play or a rehearsal for real life and therefore teaching valuable skills (social or other).

But honestly, as a general rule, I find imaginative play challenging in the sense that in order for it to be fun you have to really think outside the box. The amount of thought I have to put into it to be enjoyable has a high energy cost for me. Otherwise, imaginative play is just too boring to contemplate. I think I share this in common with my son Jeremy (unlike Damian) who is only ever interested in imaginative play when someone else is leading it. Jeremy is one of those kids who lines things up and catalogues things when playing alone. I don’t look at that as some kind of dysfunction. That kind of play has its benefits too. I consider us to be maths and science people.

However, when Jeremy was younger, I could see the benefit in imaginative play for him because if other kids were doing it, I wanted to make sure that he could understand the concept and join in at the very least. An occupational therapist, who had an interest in the area of imaginative play in children with autism, recommended the resource ‘Learn to Play’ for Jeremy. ‘Learn to Play’ is essentially a detailed step-by-step guide, with play scripts, on how to develop a child’s imaginative play skills for each developmental level. I did find it the resource useful so it may be of interest to you but honestly I also found it laborious.

Have you ever had a pretend cup of tea with your child? I have dozens of times, and I don’t even drink tea in real life. How many times can you blow on a hot cup of tea before you hyperventilate? I get bored and my boys detect when I am bored and it’s just not as much fun. Now if I had my way, I might be able to mimic (really dramatically) a waiter in a cafe,  who spills the coffee before reaching you and has to clean it up and apologises profusely for the inconvenience and offers you a free coffee in compensation. When I (the waiter) go back to the kitchen (feeling really bad about my mistake), I debrief with a fellow waiter about what a terrible week I have had (what with my girlfriend breaking up with me and my bike being stolen and all). My waiter friend sympathizes with me and tells me not to worry about the spilt coffee saying that it’s ‘no big deal’ and offers me a ride home. Now, that’s a little more interesting.

Have you ever played doctors and nurses? I have dozens of times. I’ve had so many pretend x-rays that I would have developed pretend cancer by now. Now if I had my way, I might invent a new treatment for a previously incurable condition but patients would have to travel long distances and sell their houses and/or fundraise to pay the exorbitant fees involved. Post treatment and operation, patients would skip home (literally) after many weeks of rehabilitation singing my praises (literally singing) and grateful for a second chance at life, swearing that they will never complain about small problems like a stubbed toe or sprained ankle again (then turn around and stub their toe two weeks later and swear profusely about it).

Have you ever played families? I have dozens of times, and it’s actually a lot easier to script because I do it ‘day in and day out’. However, if I had my way (and from time- to- time I have had my way on this one), I might insist I play the role of the child because that’s a role I can have some fun with. I might complain that I am bored and beg to play the iPad, ignore requests to ‘get ready’ to go somewhere by being vague and continuing to play with my action figures or torment my brother until it ends in tears. Of course, my boys would get sick of that pretty quickly and insist I become the mother. Then they would give me a bit of karma in return and as ‘pretend mother’ I would decide that it was time to stop whatever pretend activity I was doing at the time and play a game of pretend cards with them and we’d all live happily ever after. Hey, it’s my pretend story OK.

Seriously though, if I need to teach my boys a particular social skill we might do a role play or rehearse it but as for ‘imaginative play as a therapy’ goes, those days are over for us and I could not be happier. The ‘Learn to Play’ resource was targeted at ages 5 years and below. Now, don’t even consider telling me (over a cup of tea for instance) about the existence of imaginative play resources for older age groups or I may just hyperventilate.

Reference:

Woodard, C.R. and Van Reet, J. Object identification and imagination: An alternative to the meta-representational explanation of autism. Journal of Autism and Developmental Disorders 2011; 41:213-226

Introducing Autism: A personal account

“He’s just odd like you!” my husband grinned; his humour had exposed a truth that I was previously unaware of. I had been expressing my concern at my two year old son’s peculiar behaviour to my husband when he uttered the words that forever changed the way I interpreted the world and how I thought the world interpreted me.

I had sometimes reflected on my life with the purpose of trying to understand past experiences where it was obvious that I was completely unable to converse or where I had exhibited extreme vagueness beyond what would be considered a personality trait and yet in contrast to that, I excelled academically. However, until my husband’s comment that day, I did not know that I appeared generally ‘odd’.

What occurred to me next was that if my son had inherited the difference that made me appear ‘odd’ to others then he might experience a life like I did. All I could think about was that I didn’t want him to have a childhood like mine, being unable to relate to and being afraid of my peers. I knew then that I was going to do everything I could to find out what it was that my son and I had in common that made us different so that he could have a ‘head start’ finding his niche in the world.

Shortly after that, perhaps days or weeks, I watched a documentary on Aspergers Syndrome (AS). I hadn’t intended to watch it, it just happened to be on when I sat down to watch TV and it caught my interest such that I didn’t change channel.

The reason it caught my interest was that it referred to an Autism spectrum. It had previously occurred to me that my communication difficulties were like a form of Autism but I was unaware that Autism existed on a spectrum until then. I was only aware of the more extreme presentation of it without any understanding of what a person with Autism was thinking or feeling. Although I couldn’t relate to everything that the documentary addressed, Aspergers Syndrome described as an Autism Spectrum Disorder (ASD) was the closest that I had come to an explanation that fit.

Broadly speaking an ASD is a complex neurological condition which affects social communication and is also characterised by restricted and repetitive patterns of behaviour interest and activities*. As a Spectrum Disorder it represents the wide range and complexity of challenges and abilities of people with an ASD.

According to one of my most favourite books on ASDs, ‘Inside Asperger’s Looking Out’ by Kathy Hoopmann:

‘In general, a person with Asperger’s syndrome, or high-functioning autism, is someone who may have:

  • Difficulties relating to others in social situations
  • Difficulties understanding nonverbal communication
  • Heightened sensitivity to touch, sight, hearing, taste and smell
  • Set routines and a strong preference for order
  • An intense ability to focus in specific interest areas
  • A great loyalty towards others
  • A unique mind which is able to see life from a new perspective’

Another of my favourite books ‘Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models’ by Norm Ledgin, lists positive traits of ASD including: a natural sense of fairness, justice and honesty, being creative in several interest areas and having an appealingly droll sense of humour.

By creating this blog, I hope to promote an awareness of the positive traits of ASDs because there are many and they deserve to be recognized. I do not believe that we can adequately support people (in an environment that caters primarily for those without an ASD) without first having respect for them. Being aware of what people with an ASD can achieve because of the ASD rather than in spite of it, may help foster respect.

Primarily this blog is designed to offer insight for parents, teachers and health professionals and informed guidance to parents on how to support their child with an ASD.

*My understanding of Autism has moved beyond the medical diagnostic criteria since writing this post. I never really believed that it was a disorder but have come ‘full circle’ on understanding it to be a disability (according the Social Model of Disability) and a part of the neurodiversity paradigm. I encourage you to read this article by Nick Walker (a guru in the neurodiversity paradigm) for a more nuanced understanding of what Autism is. Unfortunately, my early posts may contain ableist comments. For instance, people should not have to “achieve” in order to be respected.