October 27, 2014

Angry Autistics - A Two Part Exploration: Part 1, Parents

A lot of parents with newly diagnosed Autistic children go online looking for help, support and to vent. In general, they will stumble upon three distinct groups in their search:

1) The "gloom and doom" of Autism $peaks, with its focus on research for cures, Biomed experiments on children, and ABA "behaviour modification;"

2) Supportive communities which focus on acceptance and respecting the Autistic experience;

3) An army of Angry Autistic people jumping down people's throats for not immediately "getting it."

While I am sure this post will ruffle feathers (and more!), I think it needs to be talked about. Being a parent myself AND sometimes being an Angry Autistic, I've been on both sides and can understand both sides.

First off, I'll address the parents:

I will explain, not condone or make excuses for, but help you understand why we're angry. 

If you, as a parent, have ever joined an Autism community, said one thing and had it taken completely out of context and had everyone totally dissecting your words and telling you to check your privilege, then banning you from the community before you even had a chance to say, "what?" - then you know what I'm talking about. I've even had it happen to me. But before you get too hurt about it, please remember this is how us Autistics feel the vast majority of the time in the real world. We're misunderstood when we think we're doing it right and then totally shunned from groups. Isolated Autistics don't feel they can fight back. Put them in a group as a gang and they have power, and they will wield that new power with impunity. Does it make it right? Maybe yes, maybe no.

Another reason we're angry is quite simply because we've been abused. Whether our parents knew of our disability or not, we were abused at home for being different, abused in therapy for "noncompliance," and bullied and shunned at school. When you take a child and abuse them their whole childhood, not only do they not know any other way to deal with problems other than to be abusive themselves, but unless they have had access to a lot of good therapy, they will carry around the triggers and pain with them into adulthood. Actually, even with therapy and healing, some of us still carry the weight of our pasts around. It's not easy to shake off the ghosts of abuse. Some of us still find ourselves in abusive relationships or reliant on abusive people for our very care. Damn right we're angry!

A lot of us, me included, are still not always great at being assertive in a non-confrontational way. Again, none of this is an excuse for bad behaviour, but it can explain a lot of it. All you can do, dear parent, is protect your child from abuse and make sure you are raising a non-angry child. Make it your goal to raise a child who can advocate for him/herself and is happy to be who they are. 

Also be conscious of the fact there is a lot of sadness in us - mourning for happy childhoods or families we never got to have. Sometimes things you bring up that you are doing with your child will trigger us again. Just be aware of what you're saying and who you're saying it to. 

If you come asking for advice or opinions, please don't argue with us and tell us we're wrong. If you're not open to a different way of thinking, please don't ask us for our advice. If you don't agree, you'll need to sit and think about it, but don't argue with us. Take what you've learned, say 'thank you' and move on. Telling us our opinions, insight or experiences are not correct won't win you any points.

Don't play Devil's Advocate. I'm even guilty of this, since I like to try to see things from all sides, but it doesn't go over well with Autistics who are easily triggered. They will place you squarely in the evil box and you won't be able to get out. For people who are often accused of lacking emotion or care, we have lots, overflowing, everywhere. Maybe too much. So just be really clear about what you want to know and stick to the facts. 

If you pity us, think about what you can do to help us. Or what you can do to prevent that happening to your child. Because we are like your child, whether you like it or not, but your child doesn't have to end up angry like many of us.


I plan to make another post addressing Autistic people who spend their time in groups and forums trying to help parents. 

October 26, 2014

You Can Comment Freely Now

Just letting everyone know that I've reverted the comment system from G+ back to Disqus.

I had some Autistic adults tell me they didn't want to comment on my blog because they cannot be anonymous with G+ comments, and not all are open at their workplaces or with their family.

While it opens the door for more spam and annoying comments, I hope people can feel safe leaving comments now. The genuine people should outnumber the spam people - or at least I hope!

So please, comment freely! Comment often! Just call to say you love me!

You can still share my posts with G+ like before, so that aspect hasn't changed. If you have any glitches, feel free to send me an email at 1blackpepper @ gmail.com

October 24, 2014

We Have A Disabled Parking Pass For A Reason

We have a disabled parking pass for a reason - now stop giving us the stink-eye!

Quebec disabled parking permit copyright 2014 OneQuarterMama.ca

We've only had our disabled parking pass for a few months, but we've already noticed it causes people to stare at us (more than normally) and sometimes give us dirty looks.

I get it, none of us are elderly. None of us use a wheelchair or walking aids. None of us "look" disabled, whatever that may mean to most.

I went through the legal process to get one like anyone else. I paid the fee and had a doctor sign off on it. The government approved it and issued it. It's not like I found one on the black market.

I got it because every once and a while, the Little Man has a penchant for bolting. Ok, not really a penchant, but a tendency. It happens when he gets angry or upset usually. He's not an eloper or a wanderer. He's a runner.

He tends to do it when things are not going his way - and a common scenario for that would be when we quickly have to leave a store because he wants every shiny item in it and if we stay there, things will break (I've had that happen. Luckily, no one made me pay for damages!)

So then the next logical thing would be to exit the store and run away from me, usually into a parking lot. I think we can all agree this is not safe. So rather than having to drag a screaming, unpredictable, potential-bolter through a parking lot and hope for the best, we applied for a disabled parking pass so we would always have the closest parking to the door. Because I don't want my kid to get hit by a car.

I know I don't have to explain myself or justify myself to anyone (or at least, I shouldn't!) but I have to admit, being stared at or given the stink-eye by strangers is kinda annoying. I'm not writing this for people who understand not all disabilities are visible. I'm not writing this for people who get that everyone has a story. I'm not writing this for people who understand some parents will do anything and everything in their power to keep their kids safe.

I'm writing for those who don't think, or haven't ever considered the possibility, that disabled parking is not a privilege afforded, but a RIGHT to make sure disabled people, whatever their disability, have safe and easy access to every public place, just like anyone else.

I will keep taking him out - I will not hide him in my house in order to make other people more comfortable - and one day he will get to a point where he won't bolt. When that day comes, I will gratefully give up our disabled parking pass and be thankful there are systems in place that make sure we are treated with equality

October 22, 2014

Thanksgiving Roadtrip!

It took me a while to assemble all the pictures, but here is a recap of our Thanksgiving Roadtrip!

My sister lives outside Toronto, which is a good 500km from Montreal. The halfway point for that trip is roughly Kingston. Before having a kid and when he was small, we would do the drive in 6-7 hours. We found that as he gets older, we need to stop more and for longer and I don't think it's fair to keep a 5 year old in a car for that long. So instead we booked a hotel in Kingston and spent the night each way.

I left work a bit early on Thursday and, as planned, were on the road to Kingston by 8pm. We were checked into our room and in bed by 11:30 that night, which makes me feel like Wonder Woman for accomplishing that. We gave the Little Man a bath before we left and dressed him in his pajamas before sticking him in the car with a pillow and a blanket. Of course, he didn't fall asleep in the car until close to our arrival, but he was ready to sleep once he got into the hotel bed, which is pretty impressive.

the little man in bed with his angry birds blanket on OneQuarterMama.ca copyright 2014
Angry Birds help him sleep

The next morning, we had breakfast and the guys took advantage of the hotel salt water pool. I couldn't go in because of my new ink.

my new ink "live your life" tattoo on back copyright 2014 by OneQuarterMama.ca
My New Ink!
guys in salt water pool at First Canada Inns Kingston photo by OneQuarterMama.ca copyright 2014
Guys in the pool

Then we got on the road to his Auntie's place, but of course, we had to make a stop at The Big Apple. The Big Apple is really just that: a giant red apple with a smiling face, just off the highway in Colborne, Ontario. Not only do they make amazing giant apple pies, which you can watch them make, but they have free activities for kids.

Big Apple Colborne Ontario copyright 2014 OneQuarterMama.ca

chicken at Big Apple Colborne petting farm copyright 2014 OneQuarterMama.ca
goat at Big Apple Colborne petting farm copyright 2014 OneQuarterMama.ca

First we checked out the petting zoo and fed a chicken and a goat. A llama also looked at us intently, but that was it.
llama at Big Apple Colborne petting farm copyright 2014 OneQuarterMama.ca

Auntie left a key for us (she was still at work Friday afternoon) and we let ourselves in.

When Auntie came in from work, all the excitement led to a minor meltdown for the Little Man. He had contained all that energy and was so good with all these new experiences on the way over that is just had to burst out.

The next night we had our Thanksgiving Dinner and the Little Man was restless, so he slept half on top of me on the futon, while Dada got stuck on the air mattress.

We left Sunday afternoon and of course had to stop at The Big Apple again on the way back. This time we rode the train and then the guys climbed all the way to the top of the apple. (I had to use the toilet, so I missed out on that.)

family selfie on Big Apple Colborne train copyright 2014 OneQuarterMama.ca
Family selfie on the train

family picture at Big Apple Colborne copyright 2014 OneQuarterMama.ca

Then we checked back in at First Canada Inns and settled in for the night. 
First Canada Inns Kingston hotel front copyright 2014 OneQuarterMama.ca
And drove the rest of the way home on Monday! 
The End!

October 20, 2014

The Loss of a Dream

Every few months, the Little Man seems to go through a growth period and during this time, his sleep gets disrupted.

He normally sleeps very well (he takes after his mama) but during times of growth or transition, everything will go haywire for about a week. During that week he will be hyper and anxious during the day, chatting a mile a minute, and then restless at night. He will wake up at around midnight-1am, tell me he is scared and climb into our bed.

Since we bed shared from the beginning, he's always been welcome in our bed, even though it results in worse sleep for us as he's gotten bigger. I am more concerned about his rest than mine, and he likes to take over my pillow and then sleep with his legs on top of me. I usually end up with sore muscles from hanging off the bed and not being able to move. But such is the life of a mama.

So it's no big deal when he came in at 1am and said, "I'm frightened in my room, I'd like to try out yours." Lovely. Come on in! He tossed and turned and squirmed and I asked him if he was ok. He said he was fine.

Around 4am, I wake up to him crying. "What's wrong?"

"NOTHING!" he screams out into the dark, like a petulant teenager. "Nothing" is his upset response when he loses his words. "Nothing" is like the "I'm fine" of some women. It means there is something very wrong, but so wrong it cannot yet be expressed.
Familiengrab_des_Otto_Schurig_-_Mutter_Erde_fec.jpg licensed with Attribution Sharealike 3.0 modified by OneQuarterMama.ca under same license

"You're crying, you seem upset," I tell him.

And in between sobs, he begins to tell me about a dream he was having with a slide and a bucket. Mama and Dada were there. The bucket was pink and black and brown...and he lost it.

"Now I can't get it back because I lost it in the dream!" he wailed.

"Oh my goodness, that IS upsetting!" and I tell him I understand. I tell him he will have to go back and look for it.

"But how?! Now the dream is gone and I can't ever go back!"

"Well, you just have to believe you can go back. And then you make a new dream and go back and get it."

"OK," he says, still crying.

I tell him, "we will go back to the dream together and I will help you find it. I know you can do it!"

And he fell into a deep sleep in search of his bucket that was pink and black and brown, and oh, so dear to him. 

October 19, 2014

Health Canada Seizes MMS

No More MMS Skull and Crossbones copyright 2014 OneQuarterMama.ca

I am so excited to see Health Canada finally trying to stop the sale of MMS. I wrote about the horrors of MMS here. It's essentially bleach. It's used as a disinfectant and in the production of pulp and paper. It is NOT made for human consumption, but despite this, people are making their autistic children drink it in hopes of a "cure."

Despite Health Canada issuing advisories on this product since 2010, this is the first I've seen of them actually seizing it.

It doesn't mean that it will completely stop people from torturing and abusing their children - if they can't get their hands on MMS, I'm sure they'll find something else. But anything to make it a little harder to carry out their actions makes me happy and hopefully it will make a few people think.

More coverage here:

The Toronto Star

Global News

October 17, 2014

Fake It Til You Become It

A lot of us Aspies/Auties are a little obsessed with understanding and reading body language. I know it often eludes me, even though I'm pretty good at reading emotion. (Or so I think!) I think I do miss out on some cues and I find it frustrating. I also know for sure I often give off the "wrong" body language even though it's not reflective of how I feel inside. I wish I knew how to coordinate the two better, but I am at a loss much of the time.

This is a TED Talk from 2012 that I just stumbled upon now. Dr. Amy Cuddy gives concrete examples of powerful poses and how using these poses can actually change how you feel. She advises not just "faking it til you make it" but "fake it until you become it." She says eventually, you will be changed fundamentally and your feelings will reflect your body language.

What do you think? Are you going to start doing Super Hero poses in the bathroom?

Cosplay of superheroes on OneQuarterMama.ca
4 people pose as Super Heros; from L-R: Wonder Woman, Batman, Superman and Spider Man