Friday, May 23, 2014

Warning: Triggered

I am triggered.

I know that that's a term that some people think is over-used or cliche'd. They think that warnings used to prevent people from getting triggered are senseless and leave to a feeling over over-protecting and coddling people who just need to buck up and deal with their feelings and not restrict the "freedoms"...

Clearly these people haven't ever survived a trauma.

I have.

I've survived many. More than I like to think about. More than any person should.

One trauma is too much.

I don't talk about my traumatic experiences often. This is not because I feel shame or embarrassment. It is also not because I can't talk about them without getting "emotional" or "upset".

I can, and do, talk about these events in very pragmatic ways- personal yes, but not necessarily overly emotional.

I'm not exactly know for being an 'overly emotional person'

(unless you ask my mom, who is absolutely convinced that I am in a constant state of dramatic and theatrical climax...which is, again, why I would not consider her an "expert" on me...)

Most people, or at least most people who have talked to me about it, actually think of me as being a little cold, a little stoic, a little hard to read, and completely unafraid of conflict or uncomfortable topics. I have very little need for privacy when it comes to events, but am extremely unlikely to talk about my feelings on them.

Feelings are private.

Very private.

So yeah- I can talk about things like losing my hair when I in treatments. Or my experiences as a sexual assault survivor and former counsellor. Or how upsetting and traumatic it is to argue with people who think that your son shouldn't have the right to be alive.

And I do talk about these things pretty frequently, though not necessarily divulging much private information (like feelings...)

But an awful lot of mental preparation goes into these dialogues. I get myself emotionally and spiritually ready for what I am going to encounter. I pick my time, my days, even my minutes very carefully. I don't talk out-loud about certain aspects that I know will be too difficult manage vocally without losing control of my emotions. I communicate in written format much more easily and can take the time to really frame my ideas...

I do an awful lot of things to keep myself from getting "triggered".

Most people who get "triggered" do. On a daily basis.

I have walked out of theatres. Stopped reading books. Left parties. Ended friendships with people.

I will do whatever it takes to not get triggered.

It's a survival instinct.

But sometimes, no matter what I do, I can't help it. It happens.

And sometimes, for a variety of- usually unrelated reasons- I get triggered repeatedly, in a variety of different ways, to the point of going into what is commonly referred to as a 'mental meltdown' or a 'mental breakdown'.

In these moments, I become almost completely incapacitated.

I have a hard time sleeping. Eating. Thinking. Breathing.

You know, all of those things that you need to stay alive...

I expect everyone experiences meltdowns differently.

For me, it feels like dying. The kind of dying where you wish it would just happen already so that it would stop hurting.

And it takes me days to recover.

It has been three days since my meltdown.

I don't want to talk about why it happened. That will make it worse.

I just want to tell you that my hands are still shaking. And my vision is still blurry. And my stomach is still tied in knots.

I want to tell you that I will be seeing a doctor today because I don't think I can pull myself out of this without anti-anxiety medications- a treatment that I have not needed in over a decade.

I want to tell you that just because YOU don't get triggered by a topic, doesn't mean that I don't get triggered by a topic.

And just because YOU don't feel that Trigger Warnings are a good thing, people like me NEED them.

And even then we sometimes forget to use them. And we trigger others and ourselves inadvertently.

And it takes days to recover.

Some people don't recover.

So as nice as it is for you to discuss what is best for helping me overcome my 'mental health issues', I'd sure appreciate it if you let my doctors and I sort it out.

I'm going to go back to my corner now and shake for a little while and count the minutes until my husband comes home and hope that this feeling passes soon.





Tuesday, May 20, 2014

There's nothing 'free' about gluten free...

Lately, my social media feeds have been inundated with food shaming articles. The 'article du jour' this week seems to be about how gluten sensitivity is apparently "bullsh*t" based on a small-study that has recently been released that indicated that participants (all self-declared as gluten sensitive) did not show any significant different when placed on gluten-based diets.

While I tend to put very little to no stock in Jezebel articles, and there are countless flaws with extrapolating that gluten-sensitivity (also known as non-celiac gluten sensitivity, or NCGS) is a myth, the bandwagon of social media shamers have jumped on this one with zest and zeal.

The anti-gluten-free crowd is having a field day passing this around and gleefully mocking the 'gluten free' crowd for it's scientifically-disproven, fad diet.

The irony here is that the article itself isn't condemning those who don't eat wheat, nor is it trying to say that there aren't people who don't have very real aversions to certain foods that all seem to contain gluten. All that we can really conclude is that "something" is making people sick- but we're not entirely sure what it is...

But that hasn't stopped the entire dialogue from revolving around shaming people for their food choices.

I get it. "GFCF" is a trendy thing, especially in the Autism world. Many people are 100% convinced that taking their kids off of gluten (or even just limiting its intake) will magically transform their happy-stimming Autist into a quiet, well-behaved Allistic child.

Even if this was true (it's not), I certainly did not go GFCF with Sam out of an attempt to cure him.

I did it because multiple studies indicate that sleep disorders may be related to gluten-sensitivity.

For the first three years of his life, Sam didn't sleep.

And I don't mean he was a restless sleeper, or had a hard time sleeping through the night.

I mean he didn't sleep. He would average 2-3 hours a night, for weeks at a time. Then have one good night of five or six hours before going through the entire process again. He had not slept through the night (over six hours in a row) his entire life. Not once. Ever.

We had him tested for allergies. We raised the foot of his bed. We co-slept with him, and I extended nursing because we thought it might be a reflux issue. But nothing helped.

I needed to try something...and so I leapt into gluten free without even talking to my doctor.

I was so sleep deprived that I wasn't thinking clearly. And everything else had failed, so I was kind of banking on this failing too...so the decision to just "try" didn't seem to be that big a deal at the time.

But it was.

It was a game changer.

Within a week, Sam was sleeping at least 6 hours a night. Within a month, he was sleeping in stretches of seven to ten hours.

Now, almost a year later (June 1st will mark out gf anniversary), Sam goes to bed at 730pm and wakes up at 730am...

Unless it's a full moon...then all bets are off.

When we made the diet change to gluten free, I also started investigating co-morbid conditions that often accompanied intestinal disorders. I found that gluten intolerance could lead to absorption issues when it comes to fundamental vitamins, specifically iron, in which Sam was clearly deficient. He used to get finger print bruises from just changing his diaper and had deep, dark circles under his eyes...

So, we added in iron supplementation, magnesium supplementation and other key vitamins and minerals that we felt could contribute to his overall health given his very restrictive diet.

This was another game changer.

Within a few weeks, the bruising lessened. Within weeks, his skin colour and the quality of his skin was notably improved. His bodily functions had changed dramatically and his overall wellness seemed to improve like night and day.

We had people asking us, out of nowhere, what we had changed. They could tell something was different.

He was like a 'different' kid. Except not. He was the exact same kid, but happier.

...More mellow...

....More rested...

...More nourished...

...Less uncomfortable...

(Note: (In September, three months after going gluten-free, we also removed casein from his diet. I am not convinced that it changed anything for him- so we will be doing a test to see how he reacts in the near future.)

Gluten free was the single best decision we had ever made as parents.

Then suddenly, out of nowhere, everything changed. He went back to not sleeping. He went back to bowel issues. His skin started to get pale again.

We could not figure out what was wrong! Maybe it wasn't the gluten after all...maybe there was something else.

For two weeks, we racked our brains, desperate to figure out what had changed to cause such a massive regression in his health.

Then, one night, at 12 am, it dawned on me. We had started giving him a new rice cracker. He adored it. The entire brand of rice crackers was gluten free...but maybe...maybe this one wasn't???

So I ran, outside, to where he had left a half eaten bag under his swing.

Sure enough- "contains soy sauce".

Damn.

Soy sauce has gluten in it.

And it was hurting my baby.

So away when the rice crackers, and I got MUCH more careful about labels.

We have not had an issue since.

In science, this would be referred to as a double blind experiment. Neither we, nor Sam, were aware that he was being exposed to gluten. His changes were document carefully on our sleep log, and coincide within days to his introduction to the new rice crackers, which had also been logged on our food log. It's not a scientific sample size, but it's a pretty good case study as far as anecdotal, uncontrolled studies go.

So, now Sam is gluten free. And so am I. And so is his sister. And his dad.

Why?

Because it's easier that way. And because gluten makes me feel like a bloated, disgusting mess of a woman. (Though that might be more from the fact that I am not used to eating many complex carbs and starches anymore since we have moved towards a mostly adapted paleo diet).

But mostly, it's just easier. Because cross contamination is a thing. And gluten makes my baby suffer.

We have never had Sam diagnosed as having Celiac Disease. In order to do so, we would have to have him placed on a gluten-based diet for a minimum of six weeks followed by an endoscopy. I'm not ok with doing either of those things just to confirm what I already know to be true: Sam can't eat gluten, nor can he be exposed to it in shampoo, detergents, playdoh or other substances. He also doesn't tolerate soy very well. I am unclear about how he deals with casein, but I'm not feeling any pressure to put him back on a high-dairy diet.

I don't need a doctor to tell me that. I know it to be true. And so does he. (Sam won't even touch foods that he doesn't have prepared by me because I think he is scared of what they might do to him...)

Some day, they might discover another protein or issue that co-exists with gluten that wreaks havoc on people's system. Someday, they might discover that NCGS is, in fact, a neurological reaction instead of an autoimmune or immune one, and that we've been testing for it inaccurately. One day they might discover a whole whack load of things.

But for now, Sam and I are Non-Celiac Gluten Sensitive. Because there's simply no other word to describe us yet.

There is nothing easy about living a gluten-free lifestyle.

There is nothing 'free' about gluten-free...not in time, money, energy, or emotional/social issues.

We get teased, taunted, and mocked all the time. My own family has yet to really understand how big a deal this is to us, despite all the changes that we have made.

You don't have to believe my story.

You can chalk me up to a 'fad diet' or 'trend follower' or 'cure mom' or whatever you want to.

Make whatever assumptions you want about my life, my goals, my judgment and my ability to self-assess.

I don't care.

Because my kid didn't sleep.

And now he does.

And, quite frankly, what I choose to feed him and feed myself is none of your damn business. 

So, next time you want to crack a joke about all of us 'gf hippies', please bear in mind that you don't know our story. You don't know why we reached the decisions that we reached.

And you don't know that my poutine from NY Fries is made with a corn-starch based gravy and is gluten free.

Food shaming is an asshole thing to do.


Sunday, May 18, 2014

I'm not in it for the "cool" points

So, over the past almost-four years, I've undergone an interesting and marked progression as a parent.

From the earliest days of parenting my hyper-colicky, needy newborn, to first identifying that he was walking a different path than most infants his age, to sorting out what supports and language would work for our family, and muddling my way through my own emotional transformations, I've evolved into what many people call an "Autism Parent".

For reasons that I'm not going to wade into too deeply at this time, this is not a term that resonates with me. Nor are the 'co-morbid' terms that seem to accompany it like 'Warrior Mom', 'Super Mom', etc.  I guess I'm just not nuts about "describing myself in terms of my child's disability", his Autism "doesn't define me"...labels are for soup cans, right? (*note: sarcasm)

But that's a post for another day.

Today, I want to talk about something closer to home. Because, like it or not, being the parent of a child with a disability does carry with it an element of identity. To say that it has not been significantly impactful- possibly more so than any other role in my life- would be an outright lie. This is my reality and it is one that embrace wholeheartedly. I am proud of the parenting journey I am leading and I am proud of the advocacy efforts I am making on my son's behalf.

But let me get one thing clear: I'm not in this for the "cool" points.

Parenting is a life-style that leads to the formation of many cliques. There are the attachment parents and the mainstream parents; here are the breastfeeders and the formula feeders; there are the homeschoolers, the private schoolers, and the public-schoolers...

And, as inevitably is bound to happen, within each subcategory, sub-cliques of their own also form.

Or so has been my experience as an "Autism Parent".

Many have written about the need for unity within the Autism Community. Unfortunately, we can't seem to agree on what that unity should look like.

So there are those that are anti-vaccine.

And there are those that are seeking a cure.

And there are those who believe in strict and comprehensive therapeutic approaches.

And there are those who rage against labels, argue for more funding for families, or believe wholeheartedly in telling the "truth" (or at least their version of the truth) of what Autism "looks like".

And some of these groups are way larger than others. Some of these groups dominate the figurative "high school" that is the Autism Community.

There is the "in" group and the "out" group.

And these two groups have distinctly different agendas.

Perhaps one of the most defining aspects of the "Autism Community", or- one could argue- of the Disability Advocacy movement as a whole, is the fact that, unlike other social movements, the dialogue within this one is predominantly voiced by those who are indirectly affected.

The parents and the 'professionals'- medical, scientific, therapeutic and educational- voices outnumber and outweigh the voices of those that they represent in a way that is bordering on comical.

When looking at previous civil rights movements- whether it be feminism, racial equality or gay rights- the propelling force of the movement has always been from the people actually within the oppressed groups.

Let's be frank- it wasn't men who, out of nowhere, suddenly said: "Hey, you know what we should do? Give women the vote. Maybe for Mother's Day? They'd like that."

It wasn't white people who rallied and protested racial segregation.

It wasn't a bunch of straight people who thought to themselves that gay marriage should be a 'thing'.

Certainly, there were people from outside these groups who worked tirelessly on supporting the movements. But the driving force? That came from the inside.

In fact, I suspect the world would feel extremely uncomfortable at the idea of the formation of a gay rights advocacy group that was comprised of almost no LGTBQ members.

As a cisgendered, white woman, I am extremely aware of where I sit within the various social movements that I support. For the most part, my job is to agree and support the work being done by the self-advocates. I can not speak of the experience of a visual minority- but I can let them speak, and treat them as equals. I can support politicians and organizations that are also receptive to these messages.

It is my privilege to not be a part of the problem, and to do my best to be a part of the solution.

But I probably am not going to come up with the solution, because I am not living the reality and can not comprehend the complexities within it.

And, as an able-bodied, allistic-identifying (ie: not identifying as an Autistic person), I see my role as being largely the same.

My role is simple:
To actively support the rights of Autistic people by elevating and amplifying their voices, by supporting organizations that are modelled and led by Autistic people, and by recognizing that my experience- as an Allistic person- is completely removed from the actual lived experience of an Autistic person.

Basically, to use an incredibly cliched phrase: I need to check my able-bodied privilege at the door.

Because parenting an Autistic child is not synonymous to being Autistic, the same way that being the parent of someone who is homosexual does not make me, a heterosexual, understand what it is to be gay.

I can be an advocate for gay rights, but I can not be gay.

I can be an advocate for Autistic rights, but I can not be Autistic.

Seems simple enough, right?

Except that apparently it's not. Because, as I mentioned, in the Autism Advocacy movement, Autistic people are not dominant voice.

Overwhelmingly, the dialogue is being dictated by parents who have co-opted the movement as their own.

And they are this high school's 'popular' kids.

If you don't bow down at their feet, you are outcasted, slandered, shamed, attacked and vilified.

This is true if you are Autistic. And it is true if you are a person who believes that Autistics should be the voice of the movement.

As a parent of an "it's Autism...or something like it" kid, long before he was officially diagnosed, I already felt lost in this world. None of the articles and blogs that I had been introduced to resonated with me. I could not grasp why- if I wanted to better understand my son- my main source should be parents who were just like me, albeit slightly further in the length of their own journeys.

I was introduced to many writers- some of whom every so often offered me snippets of hope that I wasn't fully alone in my unconditional acceptance and adoration of my atypical child.

But nothing really stuck with me...and so I went on and did what they advised me to do...and started working on the therapies that I'd be 'prescribed' for Sam...

And then this post changed my life: Quiet Hands

This remains the most important piece of literature I have ever read.

Here was a woman, who was like my son! And she was telling me to STOP what I was doing and listen. She was saying "When you do this...then I feel this"- and what she was describing was torturous.

Immediately, we hit the pause button. We re-evaluted absolutely everything. We asked ourselves the question: "When I do this...what does it feel like to Sam?"

And I began to understand what it was that I was missing. I was missing them- these voices- the adult voices of my non-speaking child. I was missing the Autistic in the Autism movement.

Quiet Hands was followed by a series of equally impactful posts, in particular this one that still haunts me to this day: Here, Try On Some of My Shoes

These were the shoes of an Autistic adult. And, despite the very different lived experiences, the shoes looked an awful lot like the shoes my son could have worn, in another time, in another family.

And something inside me finally broke. I had had enough of being quiet. I could no longer pretend to be something I wasn't. I could not longer allow myself to be part of the problem.

So I wrote a response to Shoes. And that was the first day I chose to become an "Ally".

And I never looked back.

But here's a little secret: Sometimes I suck at being an ally.

This is not because I want to. It's definitely not because I try to. It's simply because I don't know what I'm doing. I am still fighting against 33 years of deeply ingrained stereotypes, myths, and lies that I have been fed by the media, the medical community, 'advocacy organizations', and the world.

I have to undo all the misinformation that is firmly implanted in my head.

So sometimes, I mess it up. Badly. And I get called out for it.

As I should be. 

Because the road to hell is paved with good intentions. And even if I don't "intend" any harm, it doesn't mean that I can't cause harm.

Today, I read a blog that called out 'Ally parents' out in a way that I hadn't seen before.

It upset and angered me, in large part because this was from one of the first bloggers that I really respected and related to when I was a new 'Autism mom'.  She was one of the bloggers that inspired me to write. She was one of the few bloggers that I actually thought 'understood' why it was so important to put Autistic voices first.

She writes:
"I'm seeing a trend toward some of the self advocate allies to soak up words from autists with nearly cult like fascination and immediately apologize should they (the ally) ever step out of the dictated lines.

You know what I call my "allies?" Friends. We bicker, disagree and debate. In private.

Is that what we want? Really? Do we want to attack the very parents who are raising autistic children? Those who will be the next self advocates? How do you expect any progress to be made?

We have reached a point where debate is no longer allowed. We reached the point where talking about the hard things isn't allowed and to do so results in vilification and condemnation."
And while I seldom call out actual blogs or bloggers personally, and- as I said- there is a lot that she has written that really resonates with me and has been impactful in my parenting, I feel that I need to respond to this particular section.

I am the 'self advocate ally' being discussed. I absolutely "soak up words from autists" with a passion and vigour. Is it cult-like? No. Would she describe it as cult-like? Probably.

Because - yes - every so often I step out of dictated lines (let's call this line: "Don't Be An Ableist Asshole") and I crawl into a dangerous places ("Ableist Asshole Territory") and I become exactly the kind of person that I am trying to fight against.

Instead of elevating people, I pull them down. Instead of promoting acceptance and inclusion, I promote fear or anger.

And the worst part of it is that I just don't see myself doing it.

I am so blinded by my own privilege (able-bodied parent) that I forget that this isn't supposed to be about me.

And that's wrong.

So I back the fuck up. And I grow from it. And I get myself back on the right track.

Because that's the right thing to do.

It sure as hell isn't popular.  It's pretty much the furthest thing from popular in the world actually.

But it's the right thing to do. 

I have befriended many Autistic adults. Some of them are people that I desperately wish I knew in real life. We have formed deep and meaningful connections.

And yes. We've disagreed. In private. Because we're friends.

But the fact of the matter is that- when it comes to Autism Advocacy- I'm usually in the wrong. And when I step back and reflect on that, I see it crystal clear.

But I have NEVER been attacked. I have NEVER been abused. And I have only witnessed (over and over and over) retaliation and self-defense from this group.

I'm sure some people don't like being called bigots.

They should stop being bigots.

If a racist doesn't want to be called a racists, they should stop being racists.
And if a homophobe doesn't want to be called a homophobe, they should stop being homophobic.

I don't do what the Autistic self-advocates say because I am scared of them. I don't follow them because they are the cool kids and I want to belong.

I follow them because they are right. And if I want to be their ally, I need to let them dictate the terms.

The irony of a post about unity and not "condemning" or "vilifying" each other while simultaneously actively mocking parents like me for wanting to grow and become better people is not lost on me.

And in a perfect world, everyone in high school would get along. And there would be no cliques. And we would all be united.

And I guess the same can be said for the perfect world of Autism advocacy.

But the thing is, I didn't want to hang out with bullies and jerks in high school. It was never my thing. And if being a united front meant that we all had to become bullies and jerks just so we could get along, I wasn't interested.

I guess as much as things have changed for me, that has remained a pretty fundamental value.

I'm not in this advocacy thing for the cool points. I don't care if we all get along. I care about doing the right thing and making change in my child's life time.

And if that makes me an outcast, so be it.

History wasn't changed by a bunch of people who cared about 'getting along'. It was written by people who cared about doing the right thing.

Even when it isn't popular to do so.

And no matter how many times you tell me that 2+2=5, I still am not going to agree with you. Because it doesn't.

Sunday, May 11, 2014

Mixed Emotions and Mother's Day.

I have mixed feelings about Mother's Day.

Let me clear about something before I wade into that:

I do not have mixed feelings about my mother, nor the fact that I should celebrate her every day, and this day in particular.

My mom is the kind of amazing woman and parent that makes me wish that every day was "Mother's Day". There are no bounds to her love, her benevolence, her drive, her spirit and her passion for life. I can not begin to adequately put into the words the kind of inspiration that she gives me, or begin to enumerate the ways in which she- by her very existence- makes this entire world a better, brighter place.

Hallmark doesn't make cards for people like her. The poem to capture my gratitude could never be written.

But I have mixed feelings about "Mother's Day".

Because not every mother is like my mother. And not every woman like her is a mother.

***

Throughout my life, Mother's Day has held different meanings.

As a young child, I remember the excitement I felt in handcrafting my mother the perfect mother's day gift. Of course, I never felt like it was perfect- my hands are lazy, and I have absolutely no visual ability whatsoever. I felt shame that I wasn't able to make her something beautiful, something worthy of her.

I always felt like I fell short of that goal.

But I knew, inside my heart, that she loved everything I gave her. I knew that- when it came to expressions of my love- everything I did was perfect.

My mom always had a way of making me feel special.

***

When my parents divorced, I was eight. It was a nasty, tumultuous divorce and it was one of the best things that could ever have happened to me. I knew how unhappy my parents were in their marriage. I knew that they could no longer love each other the way you are supposed to love your spouse.

My father remarried the woman who had been, for lack of better words, his second wife.  The one before my own mother.

And I did not love her.

To be honest, I was also very aware of the fact that she didn't love me either.

This would finally be confirmed to me when, after over ten years of marriage, my father died and she severed her relationship with absolutely everyone in my family.  She stopped talking to the children that had been born to my older siblings; children who thought of her as a grandparent. She wanted nothing to do with any of us, and I have not seen her in years.

I am not worse for the wear.

But I remember vividly being instructed by my father to make her a 'mother's day' gift.

This woman was not my mother. She never acted maternally towards me.

But I was forced to tell her how important she was to me. How my life was better for having her in it. How she was the greatest 'stepmom' in the world.

And it was a lie.

Not only was she not a great stepmom. She was a pretty horrible person to me in several ways, and I did not love her.

For those years while I was young enough to be forced to do this, Mother's Day became a fraud, an imposition on my feelings of apathy towards her, and a disrespect to the feelings of adoration that I really did have for my own mother.

***

For a variety of reasons, it was believed that I would never be able to carry children. My uterus had been weakened from multiple surgeries and I lived many years believing myself to be completely infertile.

But my heart so desperately wanted children.

So desperately, in fact, that- despite knowing that doing so might kill me- I kept trying to have children regardless.

I couldn't help it. In my heart, I genuinely felt that this was my calling in life.

So...miscarriage after miscarriage- nine in total- I grieved not only the babies that I lost, but the entire identity of motherhood that I believed to be outside of my reach.

***

And then came Sam.

I will never fully understand the shift that happened, or when it was that I first became a 'mother'. I know that it happened when he was still in my womb.

I was already a 'mother' when my doctors asked me to consider terminating the pregnancy since he would likely be born still and would likely take my life along with his.

I was already a mother when I named him "Sammie" (Samuel 1:27) so that he would have a name on his gravestone if he did not survive.

I was already a mother when, hours before my hellish emergency c-section, I asked my own mother to advocate on behalf of the child I was carrying and to save him over me, if there were that choice to be made.

I was already a mother when I placed my palm on his tiny back, his premature body smaller than my hand, and vowed to protect him through this and through everything that life would throw at us.

As you know, Samuel survived his hellish birth and is today a thriving almost-four year old. He is also a big brother to an amazing sister Charlie (whose entry into the world was only slightly less dramatic.)

So now Mother's Day is no longer only about celebrating my own mother; it is a celebration of me as well.

***

And you know, maybe I deserve to be celebrated...I know in my heart that I am a really good mom. Far from perfect, but absolutely committed to giving my kids everything they need in life to be happy and thriving individuals.

So I should feel all 'Yay!' about Mother's Day now, right?

Except I don't.

Because all around me I see memes and statuses extolling the virtues of mothers everywhere. It's the "hardest job in the world", they say, without lending much thought to what they are actually saying.

"Motherhood" isn't "hard".

Yes, being a good mother can be hard.

But motherhood itself is a biological imperative.

Women have babies because it is in our genetic code to do so.

That is what makes 'a mother'.

The nurturing, caring, supporting mother? That's a social construct.

A good one, I might add.

But it's one that many, many, many mothers fail at every day.

There are mothers who neglect their children, physically and emotionally. There are mothers who abuse them. There are mothers who subject them to horrible practices to try to make them into different people- a little less Autistic, a little less Gay, a little less "prepuced"- all for the sake of forcing children to conform to their own expectations. They do not consider or care about the lifelong trauma they are inflicting.

There are mothers who kill their children.

There are mothers who abandon their children on the streets.

There are mothers who are horrible people, horrible human beings.

And I can't pretend they aren't there just because Hallmark and Facebook tell me to.

I can't say that "Mothers are the most beautiful people in the world" when I know that this is not only untrue, it is a statement that hurts and harms women who choose not to be mothers or who are, for whatever reason, unable to be mothers.

Or those who have lost children.

I can't celebrate an entire group of people based solely on the fact that they pushed a human out of their womb.

Motherhood does not always equate love.

But I do welcome the chance to celebrate the good moms out there. I know many. I have been touched by many. I was raised by one.

So, I have some very mixed feelings about Mother's Day.

And I can't help but wish we had interpreted the day slightly differently.

What if- instead of a day of celebrating Motherhood- we had chosen to use this day as a day of gratitude for the privilege of motherhood?

What if, instead of talking about how hard motherhood is, we spent more time talking about ways that we can better ourselves and better our parenting journey?

What if instead of saying "Thank you, Mom!" we said "Thank you for making me your mom"?

What if the focus changed towards bettering ourselves so that we might raise better people, instead of adulating an entire group of women without an consideration of the individual experience.

What if we chose this day to talk about supports for single mothers, and for families whose parenting journeys require a little bit 'extra' to keep them at a healthy baseline?

What if this day, we chose to address the major inequities that still exist when it comes to mothers being able to access the work force?

What if we spent this day talking about how to help build a community of support around women who did not "choose" motherhood, but instead had it thrust upon them?

What if we chose to go beyond Hallmark, and step into conversations that are so desperately needed?

What if we stood as society and said 'The first law of Motherhood should be DO NO HARM', and held every mother up to that standard?

I have mixed feelings about Mother's Day.

It goes too far.

It doesn't go far enough.

It says too much.

And leaves too much unsaid.

It celebrates a title, but all too often forgets to really celebrate the people.

And, in far too many ways, it furthers the illusion that a woman's worth is the result of what she is able to produce from her womb.

I had a beautiful day today, with my wonderful husband and my amazing children. I was given beautiful gifts, and huge amounts of praise and celebration.

And in most ways, it was just another Sunday. Because, for me, the real celebration of motherhood happens every time I take my children into my arms.

And that is not something you should thank me for.

It is something I should be thankful for.

And I am.

Friday, May 9, 2014

Unexpected Epiphanies

My family has been sick this week.

Not with anything major- just with a nasty cold that has been going around.

I got it first- not unusual given my immune-system deficiencies. I started to feel pretty miserable on Thursday, and by Friday I was in full-blown "you should probably isolate me for the good of humanity" mode.

Of course, that didn't stop me from packing my family into a car and driving us out (in a beautiful May blizzard no less) to Calgary for Thomas the train.

When I'm sick, I go into a strange sort of hyper mode. Hyper reactive. Hyper sensitive. And, oddly enough, hyper productive. I get a ridiculous amount of stuff done when feeling at my absolute worst.

I used to think that this was a reflection of my need for normalcy. Or of my frustration at not being able to be efficient enough.

And I've never lent it much more thought than that.

This week, Jason got sick too. We very rarely get sick at the same time (thank goodness!) and he rarely gets sick in general. So when he does get hit, it's usually with sudden and ferocious impact.

He needed to lie in bed for three days straight.

But he only did that for one.

Why?

Well, Jason might be the best husband on the planet. Or at the very least, one of the best.

And when his wife goes into hyper productive mode, he knows that it means he has to kick his game up a notch too.

So where most men would have been 'man-colding- it up, Jason was right beside me, wiping down toys with bleach wipes and sorting them into piles to be donated.

He spent countless hours sorting through laundry and making sure that all the kids' clothes actually still fit them.

He sat down and worked through an updated version of our budget, and helped me format all my fancy new spreadsheets.

We got a lot of work done over the past few days- and I guiltily admit that he is the worse for the wear. :(

I know...I'm a bad wife.

As I was sitting there, watching him work- sweat streaming down his forehead and matting his unwashed hair to fevered brow- I couldn't help but ask myself...

"What the hell is wrong with me?"

I mean, really? We're sick. Why do I pick this particular time to clean up the entire house? I've pushed these projects off for months- and this week, of all weeks, I decide to tackle them all?

It doesn't make sense.

And then something inside me clicked.

I always do this.

Seriously. I always do this.

Whether I'm sick with a cold, or recovering from a c-section, I somehow always find a way to go into productive mode. I do things that absolutely don't make any sense, taking on WAY more than I should. And I feel totally miserable doing it- but, for some reason I can't help it.

It's not a martyrdom thing. My brain knows that I should take it easy. It knows that I should rest. But my body can't follow what my brain is trying to tell it.

And then I remembered that time Sam got *really* sick.

It was the first time he'd been sick in years. He is almost always as healthy as can be- almost bizarrely so.

But this time, I knew he was *really* sick...because he did something that he hadn't done in years, and hasn't done since.

He made a line.

A perfectly straight, organized, and oddly stereotypically "Autistic" line.

But, Autistic or not, making lines isn't his thing. It's not what he does.

Sure he lines up trains- but random objects around the house? Never.

So that clued me in that something was wrong. Really wrong.

Sam hasn't been as sick as he was that week since I wrote that blog post. But he has been sick. And when he's sick, I've noticed that- without fail- some of his Autism "symptoms" seem to become more pronounced.

His sensory issues are heightened and he reacts more strongly to light, taste, touch, and smell.

His obsessiveness (usually only a mild trait) because increasingly present, making him cling to objects and routines in ways that he usually does not.

His stimming becomes more frequent and more pronounced, particularly in terms of his circles and hums.

When he is sick, his body seems to try to find every single way in the world of forcing him back into a state of control and of regulation.

It's almost like a self-defense mechanism.

And I've got it too.

Sam and I share a lot of traits. Yes, I know that he is mostly a mini-Jason, but when it comes to his quirks (aside from being generally non-speaking), he gets them from me.

I have been diagnosed with Obsessive Compulsive Disorder, Social Anxiety Disorder, and have strong indications of a sensory processing disorder.

I have repetitive behaviours that make me feel more sane. They are mostly mundane, like biting my finger nails, cracking my knuckles, or fidgeting/hyperfocusing on objects (my phone being my most recent go-to, but before that, I was a pen-clicker).

And when I am sick, my body seems to kick these traits into overdrive.

It's not that I *want* to clean, or organize, or hyper-obsess on paperwork, or any of the other crazy traits that I take on when I'm under the weather or in pain.

I just don't have a choice.

My brain says no, but my body says "NOW".

And it occurs to me that disinfecting toys is just my own personal version of a line of perfectly organized toys.

My body, desperately trying to find a way to organize the chaos that it is feeling inside.

And I realize, upon further reflection, that I don't only do this when I am sick. I do it during any time of extraordinary stress.

Christmas dinner has to be just so.

The house has to be immaculate before a meeting with our case worker.

The kitchen needs to be fully re-painted, 24 hours before my estranged in-laws came to see us for the first time.

My bedroom was never cleaner than during finals.

When my mind is stressed, my body needs to busy itself in order to create a feeling of control and of normalcy.

This may strike most of you as a particularly meaningful realization, but for me it's kind of earth shattering.

I have spent my whole life wondering why I did these kind of things.

I've gotten into fights with my family and friends over 'taking on too much' when I am sick or overwhelmed.

I've been teased and taunted for my almost surhuman pain tolerance (it's not really tolerance; it still hurts like a bitch. But I rarely let pain slow me down, and was up and doing housework within 36 hours of Charlie's surgical birth).

I've been told that I'm just a sucker for punishment; that I need to invent some sort of drama all the time.

The truth is much more simple.

I'm a lot like Sam.

And while most people crave comfort when they are sick, I crave normalcy.

I crave order in disorder.

It's how I keep my brain from getting sick when my body fails it.

And it makes absolute and complete sense to me now.

So next time my crazy kiddo makes a line, I'm going to smile to myself and think:

"Like Mama, like son."