Day 8: Supplementary post: On relating, part 2.

So, I just wrote a post that I suspect may ruffle some feathers. While this was not my intent in the slightest, I'm also not going to apologize for it. I can't. It was too honestly written and I meant every word I wrote.

But I do feel the need to add a supplement; an appendix, if you will. And I hope that you will read it with the genuine sincerity with which it is written.

Dear friends with "normal kids":

Some days are hard.

This parenting gig. It's hard. And while I can only speak from my first hand experience, I can tell you that sometimes being Sammie's mom is really hard.

You see, he is my amazing little man. He is so crazy awesome that it brings tears to my eyes.

But he is different. Very different. And so parenting him brings different challenges. Not necessarily worse or better, but definitely different.

One of the hardest parts of parenting a special needs kid is learning to not compare them to other kids who have no disabilities. It's learning to understand that the "normal expectations" for his life just aren't quite the same. It's struggling with the knowledge that what I thought I was signing up for is very, very different than the gift that I was given.

And sometimes different sucks.

Day in and day out, I read updates about my friends' neurotypical kids. Their struggles, their successes and everything in between. And it's hard.

Please don't get me wrong. I love hearing about your kids. But, all too often, these stories come with a healthy dose of bittersweetness, knowing that they are stories I may never share.

This is my struggle to carry, and I am not asking for anyone else to take it upon themselves. 

But I am asking this: please, please don't make this harder by comparing my kid to yours. Not in their successes, and not in their failures.  Please stop trying to equate our parenting experiences, grasping at straws to find the parallels within the differences.

There are many things that we have in common- but if you're struggling to find common ground on a topic, it probably isn't one of them.

I promise you- I will never diminish the struggles or successes that you are facing and living. But please, don't try to diminish mine by pretending that our realities are the same.

They aren't.

When we talk about sleep troubles, we are probably talking about two entirely different types of issues. All kids have sleep disruptions and some neurotypical ones have genuine issues. I don't doubt that, and highlighting or discussing the issues that we are currently facing does not minimize what you are living.

But when you compare our kids, even on something as mundane as sleep, you are comparing apples and oranges. Children with autism are reknowned and studied for sleep disturbances that are unlike any other condition. To date, science has not identified the root of this issue. Almost universally, parents of children with autism will tell you that it is the single biggest impediment to having a healthy quality of life. And if affects every single member of the family.

So unless your reality sounds like what I've outlined above, the fact is that when we talk about "sleep issues" or "sleep deprivation", we are talking about two entirely different concepts. And trying to make these the same does nothing but further isolate us, further remind us of how "not normal" our problems are.

Of how you can't relate, despite how hard you try.

So please choose your words carefully with me. Don't whine to me about your kids who never stop talking.  And when you call me to tell me about your baby's first word, please remember that while I am happy for you, this is a painful reminder of all the words that Sammie has never said.

Unless you have a special needs, nonverbal kid (or an expertise in the matter) don't give me helpful hints on how to potty train or teach Sammie togl get dressed. Please don't assume that you have some magical remedy that I haven't tried yet. Trust me, I've probably tried it all and if I haven't, there's a reason for it.

Don't say that you are "scared" your baby might be like Sammie. Don't act as if our life is a tragedy that you are witnessing. It isn't, and trust me- the world could use a few more Sammies in it.

Don't talk about your kids' "special needs" unless they really have them. No, being high energy or spirited does not make your kid disabled. It makes them typical.

Don't argue with me about how your life is better or worse. It's neither. It's yours. This is mine. They are different, both imperfect but full of potential.

Don't pretend that your introduction to psychology course somehow qualifies you to diagnose my son or cast approval or disdain on our parenting choices.

Don't ask me if I've read Temple Grandin, or inform me that Einstein didn't speak until he was five.  I am aware of both, and while both are interesting, neither is actually all that relevant to my daily experience.

And finally, don't tell me that you hope Charlie is "normal". That's a discussion I am just not ready to have yet. Not with anyone.

Just be our friends, for better and for worse, and understand that are lives are very different from yours and that that's ok.

Help me to not compare my child, for his sake and for mine. He is unique, like every other child in the world.

Thank you.

Mama Zita

Day 8: On Empathy or Something Like It...

Social relationship building is a topic that I spend a great deal of time reflecting upon since I first started to recognize that Sammie is unlike other kids. The desire to connect to others, which we are told is innate, is something that has just never come naturally to him.

In fairness, it hasn't really come naturally to me either. While I am generally good in a group and have never really struggled to find friends, my "social self" has always been a slight deception of sorts. In truth, even one on one interactions can be a lot for me and I have to really psych myself up before I can function fully in a group. Generally, I'd much rather be alone or one on one with someone from my small handful of close friends and family members. I am an introvert in the truest form, masquerading around as an extrovert.

And I often struggle with "relating".

I tend to see things from a strictly intellectual point of view and have a hard time considering the social-emotional components of discussions. I've been called "cold" or unfeeling more times than I can count; even my nickname in university was "Zita-bot".

Social media has opened a whole new world in terms of 'relating' with one another. We now know intimate and personal details of the lives of our friends and acquaintances. We are invited to comment and dialogue on all these topics, leading us to forming better "relationships". 

I suppose this is, for the most part, a good thing. People who are innately social are able to have their Maslovian needs met. But, from my ice-box, I can't help but wonder if we don't take the idea of "relating" a bit too far.

One of my greatest social media pet peeves is on "pseudo empathy". Not to be confused with genuine empathy (defined as the ability to mutually experience the thoughts, emotions, and direct experiences of others), pseudo-empathy has nothing to do with actually relating to the other person. Instead of going through the internal process required to truly empathize with how someone is feeling, pseudo-empathizers use the pain, hurt or frustrations of others as a platform for airing their own discontentments. Sometimes, this is genuinely innocent as the person just needs a place to vent. Other times, it transcends into being a veritable competition of whose situation is the worst one. Either way, the original poster is left not only receiving no genuine compassion or understanding, but they are often left feeling worse off since their feelings were minimized and trivialized. 

Let me give an example:

FACEBOOK POSTER: "Wow, what a horrible day. First, the two kids were tired and cranky and whinning all day. Then I got mugged at knifepoint in our back alley. :("

EMPATHETIC RESPONSE: "Oh my god! That's horrible! I am so sorry. That must have been so terrifying. How are you feeling about it? Is there anything I can do??"

PSEUDO EMPATHETIC RESPONSE: "I KNOW RIGHT! Aside from the mugging, I had the exact same day. I totally know how you feel. FML."

Now, we can see from the empathetic poster's response that they have taken the time to internalize, process and relate to the information that was presented. In doing so, they were able to identify 1) How the other is feeling, 2) How they would have felt in their place, and 3) What they need to say in order to convey that they are understanding of, and compassionate to, the situation.  The response is sincere and genuine. It is relational, but in a way that is internal to the respondent. 

The pseudo-empathetic response, on the other hand, is everything but. It begins by discounting the poster's feeling and the great graveness of the situation by acting as if the mugging is somehow superfluous information as opposed to the central plot point. It then ascribes feelings to the poster by saying "I know how you feel" despite the fact that the poster didn't actually get an opportunity to express any feelings of their own. It is clear that this response is neither a) considered, or b) understanding. In fact, you kind of wonder whether or not the responder has actually even read the original post to begin with. 

Now, granted, this is an extreme example. But it's actually not that far off from the situations that I have witnessed on my own page and on others. This month alone I've had people do virtually the same thing as above regarding our sleep deprivation (no, Sammie going on his third week of sleeping an average of 3-5 hours a night is not comparable to your toddler waking you up twice because he needed a drink of water...), on describing an injury ("Aside from the broken rib, my day was exactly the same..." Yes. That really happened.) and on my mom's car crash ("I felt the exact same way when..." or even better "Ugh. I was in a fender bender last week. Insurance is such a bitch.") 

Heck, take it one step further. I've actually had to argue with people why it's not ok to tell me that I "should feel grateful that Sammie is nonverbal" because their kids "talk all the time and never shut up".  Really? Did you actually just insinuate that somehow my kid's disability makes it easier to parent him because he doesn't annoy me by talking? Really? Wow. 

And it isn't just my page. I see this kind of stuff literally everywhere I look. 

Someone says they're stressed out about finals, and within seconds you see someone retorting with "you don't even know what stress is until you've had kids" or something equally ignorant. 

Someone says that they've been sick. Cue immediate response of "Well at least you didn't have to..." or "when I was sick, it was way worse..." or the ever popular "I've been sick for the last month...". 

Seriously, people. If you need to vent or bitch, I'm all for it. But can't you do it on your own page? Do you really need to compete with every negative thing someone is living?

Or, to turn things into a different direction: Let's talk about success! Pseudo empathy isn't just for the sad, you know!

Your kid overcomes a challenging feat or performs extremely well at something? HA! You'd better bet that you have at least three friends who will be there to "share" in your joy by highlighting their own kiddo's success. 

You post a picture of your kiddo in a cute outfit? You'd better hope it isn't a hand-me-down, or you will almost inevitably get the "I remember how cute my kid looked in that outfit". 

Yup. The pseudo-empathetic oneupmanship is rampant in all walks of life. 

Except marriage. You post a happy post about your marriage, and you will get torn to shreds for being too sappy. No one wants to read about a happy marriage apparently. 

But I digress. 

Listen, I have no issue with conversation. I have no issue with relating. I have no issue with sharing your joys, pains, heartaches, stories, and life events. Please do so. Do it on my page. Do it on other's. Do it often. 

But before you do, I urge you to find your place of empathy first. 

Ask yourself: 

1. Am I truly, genuinely and sincerely acknowledging the feelings of the person that I am responding to?
2. Is my response going to make them feel better about their life event, and am I validating the importance of what they are living?
3. Am I contributing because what I have to say is important and valuable to the discussion?
4. Am I coming from a place of compassion, or a place of competition?

It is totally possible to contribute your own stories, while observing these cardinal rules of human relationships. 

So, what do you do when little Johnny learns to count to five? 

Don't say: "That's great. Jill can't count to 100 now. She's so smart. :)"

Say instead: "Wow! That is so great for him, and for you! You must be so proud. I know how hard you guys have been working on those. I remember how amazing it was when little Jill learned her numbers- and then she could count to 100 almost overnight! Keep up the great work, Mom!"

And when Mary says "I've never been this stressed out before. I need to sleep so badly, but there is so much work to do for my mom's funeral."

Don't say ANYTHING except: "Mary, I am so sorry about your loss. How can I help take things off your plate?"

Any other response violates any sort of human empathy and understanding codes that exist. 

Trust me. All your friends will thank you for it. 

Day 7: On technology failing

My stupid phone lost my blog post, twice.
I am too frustrated to start over, so tonight you get a cop out post.

TOP 5 HIGHLIGHTS OF MY DAY

1) Charlie took a 3 hour nap this morning, which gave me time to organize Sam's new arts and crafts centre, getting school plans organized and really playing with Sammie, with my attention completely on him for well over an hour.

2) During said playtime, Sammie and I discovered three new games, including making echoes with the Karaoke machine. Totally adorable.

3) Both my kids were in awesome moods and there were no meltdowns to be found, even during grocery shopping. In fact, both were full of smiles and giggles all day.

4) My husband and I shared an inappropriate inside joke at the grocery store that reminded me of just how much we get each other.

5) All members of my family were in bed by 10, with both minis actually asleep before then.

All in all, it was a great day...technology failures aside. ;)

Real post tomorrow, I promise.

Good night!
Mama Zita

Day 6: On fear

"Was in accident.  Car wrecked. Home now."

The screen burned into my eyes, still crusted from the sleep I'd been jolted awake from.

It was only seven words.

Seven words that changed the world.

It only took seconds for my body to register what my brain is still struggling to process. Within a heartbeat, the bile had risen to my throat- its bitter metallic taste bursting like a volcano through my body. Tears began to overflow from the confines of my eyelids. My body, literally exploding from emotion.

My mother.

An accident.

A car wrecked.

My God.

There are no words...

I've felt this way only once before. I was 21. It was December 16th, 2002, and I was called out of a final exam to take a call from my eldest brother, calling from a province away.

"Dad is dead."

Three words that changed the world.

The sound of them was deafening.

Instantly, the world got dark and blurry, and a thin, nauseating taste of iron filled my mouth.

My father.

Dead.

My God.

There are no words.

After that, I don't remember much, except falling to the ground, as consciousness escaped me.

Fear.

It has a taste.

It has a smell.

It has a life of its own.

And despite the knowledge that she is safe, my brain and body know no rest.

I almost lost my mother last night.

And the thought of that takes my breath away...

Day 5: On little things...

A day spent sharing smiles and laughs with my mom and sister over tea.

The careful tottering of my nephew as he bravely works towards his first steps.

My son's shining face when he greets me at the door after a long night away.

My daughter's shy giggle as she hears me sneeze from across the room.

The clanging of pots and pans as my husband washes the dishes after a meal well enjoyed.

The ticking of the clock slowly making its way to bedtime.

The knowledge that Big Brother 15 is patiently waiting to whisk me away into an hour of escapist bliss.

The glow of my phone, softly lighting up my little girl's face as I nurse her down to sleep.

The spinning of the fan cooling me off after a hot summer day.

The knowledge that I will fall asleep in the arms of my love.

There are too many things in life worth being grateful for to ever feel sorry for myself.

Not today, anyway...

Mama Zita

Day 4: On rolling with the punches

Parenthood, by definition, demands a certain amount of flexibility. We all know that kids- and life in general- seem to have their own opinions on what should happen, where and when.

This is all the more true when you are parenting a kiddo with special needs; and exponentially more so when that special need is autism.

For those less familiar with autism, one of the dominant characteristics is that children on the spectrum thrive on routine and consistency.  Of course, life is seldom consistent, thus making this a feat much harder to predict than one would expect. A simple deviation can- and usually does- lend itself to a domino effect of epic proportions, sometimes for the better and sometimes not so much.

In order to survive, you have to learn quickly how to roll with the punches.  If everyone comes out no worse for the wear, then you chalk it up to as a good day. But, like in boxing, attitude is half the battle.

As someone who has been diagnosed as OCD, this is a daily struggle for me...but I am learning.  Today was one of those days where I won that battle...based solely on the decision that it would be a good day, no matter what.

A few days ago, Jason decided that I needed a break.  Knowing that a real break away wasn't feasible, due in large part to a super attached, breastfeeding baby, he planned a super fun day of family time mixed in with relaxation.

The day had an itinerary- probably the first sign that very little would go as planned.

The first item on the agenda was letting me sleep in and having breakfast served in bed. On a perfect day, that would have happened. Sadly, Charlie- the demanding ginger that she is- had another plan in mind. She awoke, early by even her standards, with a teething induced fever. So my sleep in was cut short as I nursed her calm. But a lovely breakfast was served to me, in the recliner, as I enjoyed a pvr'd episode of Next Top Model. Not quite the plan, but winning nonetheless.

Our next event was a morning of fun adventures at the John Janzen Nature Centre. Having never been before, this item had been on my bucket list for years. So we packed the kids up and took them out.

A month of sleeplessness has been playing havoc with Sam's mood, so we were literally navigating a minefield almost the entire time. But, we did manage to catch a glimpse of the steam train rolling by, which I know brought my kiddo tremendous joy. Were there meltdowns? Sure. But overall, he seemed to enjoy the experience. Another win.

Heading home for naptime, Sam fell asleep in the car. No biggie, right? Wrong. He failed to transition out from the car to the bed, resulting in a nap delay of almost two hours. Finally, Jason took him for another drive while I attended to the teething soul-sucker. But, we finally got her napped and, when Jason returned with Sam, he was out cold too. Both kids sleeping, albeit in unusual circumstances? Win.

For the next step in our adventure, we were supposed to head off for a bit of retail therapy followed by a family swim.  Swimming usually goes very smoothly and helps Sam regulate his senses for the evening wind down, so it was a good activity to follow his sensitive morning.

Since Sam was still asleep in the car, our retail therapy turned into me rushing into the store to buy a new outfit while dad worked hard at keeping the baby entertained in her car seat. It was rushed, and I didn't try it on.  But I got it home and it fits. So what do we call that? You guessed it: winning.

Swimming went pretty much as smoothly as we'd hoped, with both kids enjoying the activity immensely.  Once we'd wrapped up, it was time to head over to Mamelie's (aka "I don't DO "Grandma") to drop off a happy little Sam-Sam a sleep over, his very favourite thing in the world.

By this time, we were running a fair amount late (according to our "itinerary") so we rushed home to change for dinner. I got all dolled up just in time for Charlie to have an epic teething meltdown. We knew that it would be unfair to her (and the other restaurant guests) to go out again with her in this state, so I nursed her to sleep while Jason made some cocktails and called up the fancy restaurant to order our dinner to go.

So now, I am waiting for my husband to return with our Styrofoam packages containing meats too fine to ever be places in Styrofoam.  I've set the table with our finest china. I've decanted a nice bottle of red and I am perusing the movies on Video On Demand to mimic as closely as possible what used to be called " Date Night".

It's been an usual day, and I'm not sure I could call it relaxing. My house is trashed and I am bone tired.

BUT...I spent a day with the three people I love the most in the world. I laughed a lot. I watched my husband do some exceptional parenting. I watched my kids faces lit up in glee at the sound of trains and running water. I got some sunshine in. And everyone is going to bed happy, healthy and feeling loved.

So yes, despite the craziness and despite the ups and downs, today was a great day. It was the kind of day that life was made for, full of little joys and surprises. It was a day that confirmed everything I believe in, in terms of family, parenting and perspective. It was a day that I was grateful to be alive.

And that, my friends, is the very definition of winning.

Mama Zita

Day 3: On Giving

Lately, I have had several people comment to me how much my marriage with Jason inspires them in their own relationships. Of all the compliments I could ever recieve, this one is the most welcomed and the most humbling. 

Of all the things in my life that I have poured myself into (and there are a fair amount of them...I've always been the 'passionate' type), being Jason's wife has been the most important to me. It forms the basis for all other aspects of my life: who I am as a parent, as a friend, and as a person.

I don't know any wise secrets to "happy marriages"- to be honest, I think that luck plays a much larger factor than most would want to admit- but I do know this: I learned almost everything I believe in from a handful of stories from my youth. Like, I am sure, all other avid readers out there, we have each encountered stories and characters who impacted us in ways that we could never have predicted when we first opened the book.

In my case, there are three stories that framed my worldview of romantic relationships.  These, possibly more than any other factor, inspire me to live my marriage by certain codes. In a rare moment of intimacy (or as intimate as one can really be on a blog), I'd like to share these stories with you.

The Giving Tree:
For those unfamiliar with Shel Silverstein, I have but this to say: Get thee to the nearest book store and pick up anything you can by this famous children's author. His stories, generally marked with a certain amount of sardonic wit, are beautiful forays into human nature.

The Giving Tree is perhaps Silversteins tour de force, his opus if you will. Put simply, it is the story of a "boy who loved a tree" and she loved him. In this story, the tree literally gives the boy everything she has to give, asking for nothing in return but love.

Truth be told, it is more a story about parenthood than it is about marriage, but it taught me about unconditional love

When I was a child, I thought this book was very sad, mostly because the tree was never given anything in return. But as I grew and matured, I better understood the message: that giving to someone you love is, in and of itself, a gift to yourself.  That love is the precious gift one can receive, and that it is worth sacrificing everything to have. This has created for me the foundation upon which I build my relationships. I want to be a giver.  And I want to surround myself with other givers.

Anne of Green Gables/Anne of Avonlea/ Anne of the Island

Ok, ok...I know that this is actually three books.  But it is one story, the story of a love unfolding from acquaintance, to enemy, to friend and- finally- to love.

Those who know our story wouldn't have to search hard to see the similarities between Lucy Maud Montgomery's Anne and Gilbert's progression and Jason and mine's marriage. We too followed this exact progression over the course of eight long years. We met and were instantly intrigued by the other. We quarelled and spent several years believing that we hated each other. We were reunited in friendship, in one of the most unpredictable ways, when I fell ill with cancer. Through the illness, we grew to understand that we had transcended from friends to lovers. We've now been married five years, and have once doubted that this was the ending our story was meant to have.

"I don't want sunburst or marble halls", Anne finally tells her lover, whom she had previously rebuked because their friendship seemed too 'quaint'.

"All I want is you."

And with that, I came to realize that the love story lived in person would always trump the fantasy in my head. And I knew that I could never settle for anyone who was not also my very best friend.

The Gift of the Magi

I can not read this story without crying. It is quite literally impossible for me. I believe it to be a perfect piece of literature, and is without a doubt my favourite short story of all time.

Along the lines of The Giving Tree, O. Henry's story tells a tale of unconditional love. But this time, our characters are poor and madly in love. Without any money to buy each other gifts for Christmas, each character gives up their most prized possession in exchange fir buying the perfect gift for their loved one, ironically, rendering the gifts useless.

A little sad, and a lot bittersweet, our heroes remind us that when you love someone you give them everything you have. Like Anne learned, this is more than riches and luxury- it is the gift of oneself.

But what Henry also underscored is that true love is reciprocal. It is the original "gift that keeps on giving" because your loved one wants to return the love to you as unconditionally as you give it to them.

This truth, above all others, enlightened me as to what marriage should be about, and it is what I strive towards every day.

I can not properly express the joy and gratefulness that I feel for having found a partner like Jason. Sometimes it feels like we've been through it all together. Of course, then life has a way of reminding us just how untrue that is. There are many obstacles to face, many more bridges to cross and challenges to overcome. But, I am not afraid of these, because the foundation of my life is rooted in a love so deep that it overcomes against all odds. It is rooted in the giving fully, unconditionally and whole-heartedly to another human being, and the peace that comes from having this trust returned to you.

I'm not saying we're perfect- not by a long shot. But we are happy. And that feels pretty perfect.

So, sappy as it might be, I will always consider my marriage to be the rock upon which I build my life. As long as we have each other, and the family that our love has built, I will never be lacking.

Mama Zita