December 06, 2018

On Grief

I’m no expert on grief, but I want you to know you’re not alone and everything you are feeling is totally normal. Just like birth connects women to the wisdom of the ancients – we have been birthing for millennia and each of us become connected like a cosmic thread – death unites us in the same way. Or rather, grief does. I’m unsure if we are united with anyone after death, but for sure, once you experience the death of a loved one, you gain membership into a club no one told you about and one you never wanted to be part of.

The first year is the worst. It just is and there is nothing you can do about it. Accept it is awful. You will feel sick, weak, tired, drained, exhausted, depressed, angry, impatient, and sad. You are going through the process of seeing the world with new eyes and adjusting to a new way of life without your loved one in it. You will take pictures you wish you could show them, and the sudden memory that you cannot will sting your heart. You will go to pick up the phone to call them and remember you cannot. You will hang on to every shred of memory you can find – a scent, an item of clothing, a favourite object of theirs.

a brown woman with a pained expression on her face, holding her head in her hand.
image of a woman holding her head in her hand, eyes closed with a pained expression on her face

The first Christmas/Hanukkah, birthday, whatever major celebration without them will suck. If you do manage to have fun, you might stop yourself and feel bad for having fun. Try to just feel whatever you feel and not judge it. I don’t believe any loved one would want us to feel bad – especially because of them.  Ask people to be gentle and patient with you.

I had/have days I wake up fragile without a good explanation other than the emotions just have to pass through and come out. It’s OK to tell your friends and give a head’s up – "today is a vulnerable day."

Every year after gets better. Unlike people, grief never dies. It morphs and lightens and changes, often leaving bittersweet memories instead of pure sadness in its wake, but it will always be with you. And this is why it is futile to fight it and easier to accept it as a journey or a friend who won’t go away. Annoying, but still a friend. A journey without an ending. See it as you wish but know it won’t leave you.

At the same time, there’s no need to hang on too tightly. By moving on, you are not disrespecting the memory of your loved one. They have tucked themselves into a little corner of your heart to make space for all the other wonderful people you will meet in your life. Your heart has enough room to hold them all. It’s a muscle that expands with exercise. Allow your heart to exercise its love muscle!
Remember that all this pain – this horrible heartache – is evidence that you have loved, and loved deeply. And that is a gift, my dear soul. You were lucky.

April 22, 2018

Beyond The Spectrum - Documentary Review

Content warning: functioning labels, pathology paradigm, feeding/gagging, injections, ABA language

Beyond The Spectrum screenings were held in theatres across Canada for World Autism Awareness Day, and I was invited to be on the discussion panel that was to be held at the end of the screening. In our case here in Montreal, no one showed up to watch, so it was just me and three other of my autistic friends.

I'd love to say I really enjoyed this documentary and had a great time, but I didn't. But let me back up.

Beyond The Spectrum follows a Canadian family for a year after their two year old son, Oskar, receives his autism diagnosis. His parents decide to take a year off work to devote to his care and explore many different methods, therapies, diets, and supplement "cures" to try to make him less autistic - I guess this is the best way to put it. They don't explicitly say that, but the father "hates autism" so this is the best paraphrasing I can come up with.

It should be noted there's an older son, Teddy, who is also autistic. The mother appears to have been a single mother at the time Teddy was diagnosed, so the therapies she did with him were different. Teddy appears to be around 8 or 9 years old in the film (I do not remember his age) and says he believes he is no longer autistic. He speaks of having autism in the past tense.

Regardless of the functioning language used in the film (Oskar is "severe"), My Little Man (now 8) presented very similarly to Oskar at the same age and now presents very similar to Teddy. Only difference is we did not subject our son to even half the therapies this other family tried.

The PR people who reached out to me to sit on the panel warned me ahead of time that the content of the documentary could be difficult or controversial. I was told I did not have to agree to everything I saw in the film, just provide my opinion/perspective. I believe their warning was warranted and I also think it contributed to the lack of an audience showing up to see it.

After the screening, I posted on Instagram and the father asked me if I related to it. I had to tell him, sadly no. As an autistic person, I could relate to the children and why they were behaving the way they did. As a parent, I was deeply disturbed - I found parts of it extremely difficult to watch and am glad I had my friend next to me to comfort me. Images of Teddy undergoing "feeding therapy" and gagging are still burned in my memory. Oskar being injected in his buttocks with vitamin B12 just make me sad.

On the plus side, I am glad I saw it because it represents what I believe so many Canadian families go through. We are still such an ignorant and ableist society that we don't leave room for difference. Because of this, parents are absolutely terrified by autism. They don't understand autism and have never spoken to another autistic adult. They see no hope.
Because I am so well-surrounded for the most part by people who accept difference, I forget there are still those parents who are parenting out of fear and ignorance. But this is reality and they are in the majority.

Unfortunately, autism has become an industry based on fear. People charge thousands of dollars to apparently "make children indistinguishable from their peers" and parents fall for it because they're terrified of who their child will become.

It makes me sad for them because they are stressing themselves out, they are stressing their marriages, they are stressing their children, and they are emptying their bank accounts - all because of their misunderstanding of autism.

At the end of the year, the father decides to go back to work, and the mother seems to be more accepting of Oskar.

I don't know what this family will do in the future, but I hope they find a way to be accepting and happy. It makes me want to work even harder to destroy the myths and fear, and create a society that is truly inclusive so that this family's story doesn't have to be the norm anymore. 

March 20, 2018

Chewigem Reviews

Last fall we became Chewigem Ambassadors. We already had quite a few pieces we had already bought and used, but now Chewigem has been sending us their newest pieces to review. 

I've been making video reviews, so I'm compiling them here so you can check them all out, starting with the most recent. 

If you have any questions, Carla and Linda are there to answer you promptly and very accessible, whether by email, phone or even Instagram message. And shipping is fast! 

Check out what we think of our Chewigem accessories!

October 30, 2017

We're Not As Divided As You Believe

mage of a man icon on a circular gradient chart with sections of varying shades of pink, with black text which says "a community divided?" on blog
Image of a man icon on a circular gradient chart with sections of varying shades of pink, with black text which says "a community divided?"

If you speak to a lot of parents of autistic people, you'll hear many excuses for why they don't listen to us as authorities of the autistic experience. Aside from the whole, "you're not like my child" (well no, we've grown up), I'd say the most common way to try to discredit us is by saying our community is divided.

And I'm going to jump in here as someone who's very active in the community and say NO. That is not the case. If you choose to believe that, you're just making excuses. 

If anything, you are the one creating a divide by not listening to the many of us who are speaking. It's also amazing to me how much energy many would rather spend trying to come up with excuses for not listening to us rather than just listening to us. 

When I speak to and meet other autistic people, I feel an instant connection. Not only that, but even if I don't agree with them 100%, I am totally able to see where they are coming from and why they think the way they do. (I can't say the same for dealing with NT people)

Do we argue amongst ourselves at times? Yes, we're human. Do we get very passionate in our debates? For sure! We are logical beings. We have feelings and emotions. We have a distinct need to be heard. Do we disagree on language? Sure, while most people prefer the term autistic, some people prefer to be called people with autism. No biggie. These are not major devisive issues.

By and large, do we agree that ABA is abusive? YES.
Do we have issues with Autism $peaks? Many of us do.
Do we want to be cured? Nope.
Do we believe in neurodiversity? Yes!

When it comes to big and important issues, we're much more cohesive and in agreement than many might think!

I see it as no different than the Deaf community - there are many for sign language and there are some for cochlear impacts and verbal communication. There's a whole overlap within there, but they are still a distinct culture. Do we discredit the needs of Deaf people simply because there is more than one way to be deaf or hard of hearing?
(Actually, I'm going to say society finds way to discredit pretty much any disabled experience, but I'm trying to make a point here.)

Look, the fact is, people can pick and choose what they want to hear and what advice they want to take, but do not discredit us as a whole, or tell us you just don't know who to listen to because you've heard more than two opinions. Get more opinions and listen to the majority - even if it's not what you want to hear.

June 30, 2017

We Have A Male Babysitter

The title of this post has been sitting in my drafts since 2015. Why has it taken so long to write? What is the hesitation?

I guess I feared judgement. Or maybe I didn't think it's such a big deal. Considering how long it has been sitting in my drafts and my brain, I think it's something that does need mentioning and talking about.

So here goes: we have a male babysitter. I shouldn't have to qualify it that way though. Like "manbun," men can have buns. The hair style is not the sole domain of women. Nor should the title of "babysitter" be automatically feminine. So let's try again: we have a babysitter, who happens to be male. In fact, we're on our second one.

Why not? Perhaps it's not all that common, but it works for us. I think the next generations are going to be a lot more egalitarian.

Light blue icon of a male on a dark blue background with the text: We Have a Male Babysitter written across the top

The fact is, both my boys have gravitated to males. In my household, I am outnumbered. Even our pet rabbit is male. My eldest son was thrilled to find out his camp shadow this year is male.

But let's address the elephant in the room: Abuse.
Yes, pedophiles are more likely to be male than female. (They're also more likely to be left-handed...should left-handed people scare you? I'm a leftie!)  However, I do think both males and females are equally likely to abuse people in general (physical, emotional). Having grown up with an abusive mother I can attest that women are just as damaging, but are better at hiding their abuse perhaps.

Either way, we vet the people who care for our children thoroughly, and also go by our gut instincts. Male or female, we ask for First Aid/CPR certification, background checks, references, non-smoking, and no drugs or alcohol when you show up to work. Both our (male) babysitters came highly recommended by other families and/or their work.
If you sit and think about it, my own husband would not have been qualified to babysit our own child by our standards. (I already had my CPR certification with the Little Man was born, but he went and got it later. And yes, I insisted on it!)

In the end, I want my kids to have fun and be well-cared for. The gender of the person is irrelevant. I know we are in the minority and I think that's why I hesitated writing this.

I think, however, as my sons grow up, if they need aides for daily living tasks, they will still probably opt for a male. I don't know, but I think for myself, if I'm going to need help bathing or toileting, I would probably prefer a female rather than a male. I prefer a female masseuse. I have no preference for doctors, though mine are currently male. It comes down to individual preference I guess, and right now my kids are squarely in the man's-man territory.

Would you, or have you, hired a babysitter or caretaker who was male?

June 28, 2017

All The Weight of Our Dreams is Available

I am so happy because it's been a long time coming and I am pleased to announce All The Weight of Our Dreams is available!

I had mentioned last year I was contributing to two autistic anthologies and All The Weight of Our Dreams is the first one out. The second one should be available in November 2017. Cross your fingers!

Book cover of All The Weight of Our Dreams: on living racialized autism

Compiled by Autistic writers/editors and the Autism Women's Network, here is the description:

Delve into poetry, essays, short fiction, photography, paintings, and drawings in the first-ever anthology entirely by autistic people of color, featuring 61 writers and artists from seven countries. The work here represents the lives, politics, and artistic expressions of Black, Brown, Latinx, Indigenous, Mixed-Race, and other racialized and people of color from many autistic communities, often speaking out sharply on issues of marginality, intersectionality, and liberation.

It's also available from Amazon and a pay-what-you-can version is promised soon.

Stay tuned as I hope to be able to do a few public readings of my piece. 

June 26, 2017

This Language Ain't For Y'all

Let me state that language is a bit of "special interest" of mine - I have a degree in Linguistics - so I have an educated understanding of language and all its idiosyncracies and beauty. While there are hundreds of languages spoken in the world, communication, at its most basic, is any two people managing to understand each other. That's it. Communication may use writing, spoken utterances or gestures, but it just needs any two people to understand each other to be valid. I have a deep respect for this wonderful human process.

So why am I writing this? Because it annoys me when people criticise other people's language or communication because they "don't understand it" or they accuse other people's communication of "dumbing down society." Scientifically, this is absolutely ridiculous. Politically, it's bigotted, sometimes even ableist.

Take this Tweet, for example:

"On fleek" has been in use since 2014, if you use Merriam-Webster as a source, or 2009, if you go by whatever you find on the internet. Either way, it's not a mainstream word and not everyone uses it. However, you'll get plenty of people criticising it and other "slang" words' use.

"I don't get get it. It sounds stupid! Why can't people speak proper English anymore!" 

So there are a few problems with complaining about language evolution:

  1. You can't stop time and change, sorry to break it to you! No matter how much you complain, new people will do new things. The world changes and you're kinda stuck either adapting or being really unhappy.
  2. Who made "proper English" (whatever that is. That is not a scientific category) the Holy Grail of languages?
  3. These words or language being used aren't for you to understand. In fact, many speakers much prefer you not understand. 

Remember how I said communication is any two people being able to understand each other? Sometimes languages develop specifically because the speakers don't want anyone else to understand them.

If we look at the development of many creoles in the Caribbean, this is exactly what occurred. People from different African countries were stuck together on slave boats. They did not share a common language, so they had to find ways to communicate with each other. By mixing words and phrases from their own languages, and those of the slave drivers, they were able to create their own languages. In Linguistics, we call this a pidgin. Ideally, they did not want the slave drivers to understand them - I think we can all appreciate why this would be.

When a pidgin evolves and a basic grammar starts to emerge, it becomes a creole. The point I need to make here, however, is not only is language in constant evolution (just like people!), but the necessity to have communication that is solely for the understanding of certain groups of people has been going on since we started communicating with each other. Social groups use different methods to make themselves distinct such as diet, dress, creed, and of course, language.

Is it really any surprise that teens might make up their own words and use them with each other, maybe so their parents don't understand? It's creative and genius. There's nothing unintelligent about it and it certainly doesn't affect any one else's use of the dominant language.

Or if we look at African American Vernacular English (AAVE), again created by a racial group, which can serve as a marker the user is part of that social community. It's how people relate to each other. Contrary to "dumbing down" English (or any other language for that matter), all users of a creole or a vernacular speak the dominant language of the area (English) - meaning they are actually bilingual or polyglots (multi-lingual). They're actually using more of their brain than unilingual people.

As it's all communication, I see all languages (spoken, text, sign, morse code) as equally valid. A pidgin is not any less useful than "proper English" - both get the job done. Pidgin poety also exists, so fear not, the arts are not neglected.

[Image description: a corner of a keyboard, a cell phone and a pen with the words, "This Language Ain't For Y'all written in dark blue along the bottom]

When people hear slang and complain, "that isn't an English word! I don't get it! It's dumbing down society!" that's like saying Italian is going to ruin English because you don't understand it. And really, don't be so full of yourself. It's not for you to use. It's not even for you to understand. You're not part of the group that is using it! You weren't invited into their conversation. You're being the rude one if you're jumping in and demanding you understand other people's private (or exclusive) conversations.

Remember that any group of people excludes others from their conversations in many ways. Inside jokes are one. Or a family that uses a term for something their toddler came up with and it stuck forever. My husband's family has an "oompa." What is that? You can guess, but unless you're part of his family it doesn't make sense for you to know or understand. There's no reason for you to start using it, and his family's use of it doesn't somehow hurt the whole English language and threaten its very existence.

Certain words and phrases come into use because of spelling errors, or short cuts in written language (texting) being necessary or common. What might look "lazy" to you could just be someone's dyslexia. Is it really fair to complain someoene's learning disability is not only annoying you or is "ruining" the language? If that's the case, I don't want to hang around you.

So of course, you are free to continue criticising the words other people use, but please try to remember that it has nothing to do with you. It's not meant for you. You do you :)