Thoughts about divisions Part II: People separated by a common language

Oliver lining up his Beanie Balls

Oliver had a meltdown on Sunday.

I’ve read a number of stories about meltdowns. One of the best and most heart-wrenching is Don’t Laugh at Me . If you’re unsure what the difference is between a tantrum and a meltdown then that’s a great place to start.

Oliver has had smaller-scale meltdowns before, when faced with things like nail clippings or haircuts. They’re more like sensory freakouts really and I’m working on helping him stay calm during these times and thankfully it does seem to be getting better. Last Sunday was the first time I had witnessed him go “full Chernobyl”.

Gingerheaddad was with us and the boys had just had their swimming lesson, something they both enjoy. We went to a nearby Starbucks to grab a post-swim snack. The boys typically enjoy going for a coffee because it means they get a cookie the size of their head. If we are headed to the coffee shop in our neighbourhood Oliver will often jolly us along in his adorable echolalic fashion:

“We’re going for coffee”

“Yes Oliver, we’re going for a coffee”

“We’re going for coffee”

“That’s right! You and Owen can get a cookie and Mummy will have a coffee”

“We’re going for coffee”

…..I’m sure you get the idea. 🙂

That day I really wanted to finish my coffee while it was still warm (me and my crazy ambitions!) so I gave the boys their iPads as this will generally keep them both happy and at the table. Oliver had just started to ramp up – he was standing instead of sitting, saying things like “I want to jump” and moving around the table, so we figured it was a good time to go. Jim had to run to the washroom so I helped Owen with his coat and at that point Oliver started to run around the coffee shop – I wasn’t phased at this point as that’s actually pretty normal behaviour for him and we were on our way out anyway. Jim herded Oliver back to the table so we could put coats on and then seemingly out of the blue…

Oliver started throwing himself on the floor and screaming over and over at the top of his lungs “Oh maaaaaaaan”. He was crying but his eyes were all scrunched up, his upper body was rigid and his legs were kicking out – not really at anyone or anything in particular, more like a rhythmic kicking of his legs.  Owen can be a sympathetic cryer but, miraculously, he took the situation in stride and just sat at the table and waited it out. Logically I knew what I had to do – don’t touch, don’t speak, don’t look; stay calm and make sure he stays safe. Nonetheless, every instinct I had was to comfort him and a couple of times I reached out to pick him up and he would escalate. I’d mentally chastise myself and go back to waiting it out. After the storm broke Oliver visibly relaxed, looked at me and said “Mummy, I want a hug”.

Note to self - don't try and hug this. Wait it out.

Once we had hugged for a few minutes he seemed fine. We got ready and went home without incident. He was a little less exuberant than usual but otherwise ok. I on the other hand was a wreck. At no point however did I think – “God I hate autism”. Not because I’m some kind of saint but because, for me, it would be akin to saying “God I hate Oliver”.

You may be wondering what the subject of this post so far has to do with its title. Well, in Part I of ‘Thoughts about divisions’, I wrote about why I didn’t feel my sons’ autism needed curing. Does that mean I’m happy as a clam about Oliver’s meltdown last week? No it does not; and believe me, I will continue to deploy every strategy I can to try and ensure those meltdowns aren’t triggered. But the reason I don’t see the need for a ‘cure’ is the same reason why this horrible experience he went through didn’t leave me saying how much autism sucks; its because autism is an integral part of who he and Owen are. Autism is not a separate entity that has attached itself onto my sons and which I now have to cleanse them of – it is woven into the very fabric of their being.

In Part I of ‘Thoughts about divisions’ I shared how helpful I had found it to re-think autism through the paradigm of gender. So, in the context of this post I ask myself, am I female, or is femininity something I live with?

– If a friend is upset and I give them a hug, is that a response from me or my gender?

– If I both cry and eat when I’m happy and when I’m sad, is that me or my gender?

– When I’m irritable and snappy is that me or my gender?

People have earned countless academic degrees looking at the subject of gender identity and stereotyping. My point here is horrendously oversimplified and for that I apologize but I’m trying to get across the fact that most of us don’t see our gender as something separate from ourselves. We don’t look at the strengths we have and attribute them to our gender. If we have tendencies or traits that aren’t healthy, like over-eating or being quick to anger, we deploy strategies to modify those behaviours, we don’t blame them on our gender. We don’t talk about how much we hate being male or how femininity totally sucks.

Applying this way of thinking to my kids:

– The other day Oliver met someone he hasn’t seen in a year and he remembered this individual’s name without prompting. Oliver remembers entire sections of script from tv shows he hasn’t seen in months. Is that Oliver, his gender or his autism?

– Owen will get so excited at the prospect of doing something simple like being on my bed, that he will run up and down the hallway several times before actually getting on the bed and then covering himself with the duvet and pillows whilst squealing with joy. Is that Owen, his gender or his autism?

– Oliver has challenges sharing but loves giving things to people in order to get them to smile – is this trait Oliver, being male or being autistic?

– Owen is fearful of dogs. Oliver adores them. Which trait is autism? Or are they just both little boys, one of whom loves animals?

In my experience, what can often happen is that all the traits we love about our children and all the strengths they demonstrate, become inextricably fused into their identities, whereas all the challenging behaviours are bundled up and neatly labelled as ‘autism’ – something we view as separate from our children.

In many ways, parents in the ASD community are united by a language that can be incomprehensible to others – its one filled with jargon like ‘echolalia’ and acronyms like OT, ABA, IBI, SLP, IEP, IPRC… the list goes on. Yet when it comes to describing our children our language firmly divides us. We debate the use of person-first terminology and the compromise most of us come to is to agree to disagree, to respect each other’s choices. If you want to refer to your children as “living with autism” then I’m not going to correct you – neither your children nor your worldview are mine. However, my children are autistic and I will do everything I can to ensure they are proud to be autistic.

I’m female; I was born female and I always will be female. I think of myself as a woman; I don’t think of myself as living with femininity. In self-identifying as a woman and when people call me a woman, I feel good, not slighted. Is being female everything I am? No; I can be both gendered and an individual. In finding kinship with women I don’t somehow lose my personal identity. In speaking with and reading the writings of, adult autists and aspies, they view their autism in the same way as I view my gender. I haven’t yet come across an adult on the spectrum who refers to themselves as living with autism; on the contrary, in the same way that I’m proud to be a woman, they’re proud of their autism and have no qualms about referring to themselves as autistic.

I have no doubt that my friends love their children, regardless of whether or not they use person-first language or think that autism sucks. But before we go back to respecting each other’s choices I would encourage all of us to consider a few things first:

  • If we hate our children’s autism, what steps do we take to ensure that our children don’t learn to hate themselves? If you think a child doesn’t pick up on their parents’ hatred of their autism then I respectfully suggest you may be mistaken.
  • We worry terribly about our children being bullied. Do you think that our children are more, or less likely to be bullied if they are proud to be autistic? Would your answer be the same if a child knew their parent hated their autism?

Our words have extraordinary power. Using the word ‘hate’ to describe a part of our children may have consequences we do not intend. Autism is the only reality our children know, insisting that it is a separate entity that they live with, rather that the reality they are living in, may have repercussions that we cannot foresee. My children are male, blue-eyed and autistic unless and until they tell me otherwise.

Men suppose their reason has command over their words; still it happens that words in return exercise authority on reason – Francis Bacon

 

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20 Comments on “Thoughts about divisions Part II: People separated by a common language”

  1. CGregoryRun March 2, 2012 at 12:33 pm #

    Love the whole person ❤

  2. KJ DellAntonia March 2, 2012 at 1:55 pm #

    I hope you’ve read Priscilla Gilman’s The ANti-Romantic CHild–this is a big theme for her, and it’s so important and fascinating. I’m sure you have, but if not, I think you’d enjoy it–Love your post here–Best, KJ (NYT’s Motherlode blogger)

    • OMum22 March 2, 2012 at 1:57 pm #

      I haven’t – but thank you for the recommendation and for taking the time to comment.

  3. Holly Stillwagon March 2, 2012 at 4:48 pm #

    I have no words. ❤

    • OMum22 March 2, 2012 at 4:49 pm #

      Thank you Holly! ❤

  4. Lara March 2, 2012 at 5:05 pm #

    I loved “Part 1” so much that I’ve really been looking forward to “Part 2” you did not disappoint. So often, we find ourselves caught up in the day to day frustrations of being a parent (SN or otherwise) that we don’t realize how those frustrations translate to our children’s self-esteem. Thank you for putting it in to perspective. Very well done. ❤

    • OMum22 March 2, 2012 at 5:50 pm #

      Thank you Lara. Sorry to keep you waiting for Part II – I’ll try not to leave it so long until I do Part III 🙂

  5. Lisa Gallegos March 3, 2012 at 1:09 am #

    You know I can read you everyday of the week. You put into words what I feel about autism and Racer.

    • OMum22 March 3, 2012 at 1:12 am #

      I can’t think of a higher compliment than being told I’ve written something that my friends love to read. Thank you Lisa.

  6. janet groll March 3, 2012 at 5:51 am #

    Wow! What powerful, thought provoking writing….

    • OMum22 March 5, 2012 at 11:15 am #

      Thank you Janet – for your comment and also for liking my Facebook page and sharing this post amongst your colleagues.

  7. Angel March 4, 2012 at 1:04 pm #

    Hi!

    I just saw this post from Aspie Side and I am so glad I came over to read it. The last part about considerations and the power of our words are so confirming and ringing in my heart today. Thank you for this post.

    • OMum22 March 5, 2012 at 11:34 am #

      It was so kind of Aspie Side to link to my post and I LOVE her post about Beanie Balls. They really are quite awesome! I’m glad you came here too and it makes me so glad that you got something out of this post. Thank you for commenting.

  8. Leah Kelley March 4, 2012 at 8:22 pm #

    Spectacular!! You have handled a complicated topic with such skill and insight, and in a way that is accessible to others who might not otherwise be aware of these perspectives.

    And I agree… I love my boy in his entirety and autism is a part of who he is… and I think your analogy to gender is an excellent way to explain this.

    Thank you D! This is a brilliant post!

    Leah

    • OMum22 March 5, 2012 at 11:38 am #

      Leah, you are always so generous with your support. Thank you for your kind words – I can only hope that someone out there reads this and decides to reconsider using the word ‘hate’ in connection with anything related to their children.

  9. E (The Third Glance) March 4, 2012 at 9:38 pm #

    Hi there,
    I just stumbled upon your blog, and I absolutely love it! I’m sorry I haven’t found you earlier. As an Autistic Adult, I really admire and appreciate your perspective. I know us Auties can be a challenge, especially when we’re little, but I so appreciate your refusal to “hate Autism” – I so appreciate you saying that. I can’t wait to read the rest of your blog. Thank you so much for sharing your wonderful. 🙂
    Cheers,
    E

    • OMum22 March 5, 2012 at 11:40 am #

      Welcome E, its a pleasure to have you here. I love hearing from auties and aspies so I am looking forward to also checking out your blog. 🙂

  10. Gingerheaddad March 10, 2012 at 8:49 pm #

    It was a pretty stunning thing to witness Oliver’s meltdown. You and Owen were amazing.

    I have often thought of people who say they are angry with autism and wondered how long a distance it is from there to being angry with their child who is autistic or angry with the other parent who helped create the child. Special needs parents are under such incredible stress and we may not always able to tell that we are transferring our anger or hatred of a thing to a person we love.

    It is impossible for me to think of my son as anything other than autistic and that is one of the many things that make him lovely. His kind soul cannot be divided from him any more than being autistic can. How people react to him and how he behaves or lives his life will shape him. Hating autism cannot give him a sense of pride and strength. Instead, it would make him feel guilt and defensive.

Trackbacks/Pingbacks

  1. Beanie Balls for Sensory – The Aspie Side of Life - March 4, 2012

    […] twitter about a parent saying “I hate autism”. I can’t go there in this post but here is a great post on that topic that also reminded me that I have been meaning to write about Beanie […]

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