Day 11: On the end of an era...

Tonight, after 12 years, B Street bar, the best Karaoke Bar in Edmonton, closed its final weekend in this format. Tomorrow, it begins its new life as a live music venue.

12 years...
I celebrated my 21st birthday there.
I started, and partially ended, a long term relationship there.
I laughed.
I cried.
I fell down drunk there.

One post could never contain all the memories, all the nostalgia.

But I am glad the old gang got together to relive it, if only for one night.

I feel like a part of me is officially closing the door on my youth.

Goodbye, B Street. It's been quite the ride.

Mama Zita

Day 10: On posting for the sake of posting

I am working really hard lately at finding my drive again, that inner sense of push towards accomplishment. I used to be an extremely "accomplished" person. I did a lot, and most of it I did rather well. Whether it was sitting on a dozen committees or pounding out a 20 page paper in two days and still acing it, I was known for being able to "do"  a lot, usually in a small amount of time.

But when I got sick, nine years ago, all of my drive got refocused into "getting better" and life, in all its craziness, kind of kept up that pace of 'survival is enough' since then.

But now, six years in remission, I am finding that I am done with acting like I am still in "survival" mode. I want to thrive, flourish and adore life the way I used to.

So I am setting myself "me" focused goals, focusing on reigniting passions that I'd long abandoned.  Music, writing,  even physical activity, have become new journeys of rediscovery.

And to do this, I sometimes have to force myself to accomplish, even when I don't always feel up to it.

So tonight is another exercise in follow through, and a small step towards that goal.  I committed to blogging, 30 days, no matter what.

And so tonight, you get rambles. The words don't mean all that much. But the fact that I wrote them means everything.

Day 9: On Charlie...

I've noticed that I spend a disproportionate amount of my writing talking about Sammie, too often forgetting to write about my daughter.

Part of that is owing to the fact that a lot of our lives revolve around meeting his unique needs. Part of it is habit- I've spent three years plus focusing on Sammie and it can be hard to get my brain away from comparing my internal notes on how much he's grown and evolved as a human being. And part of it is simply that I've gotten to know him more. He and I had years together before we even dreamt of a little girl, and even now she has to share attention with him all the time.

Regardless of the reasons, valid or not, it's a habit I am intent on changing. While she may not be the "squeaky" wheel, my baby girl is crazy interesting and awesome. And the world needs to know it.

So here is my post, dedicated entirely to my teeny tiny baby girl, Charlize, who never goes by her full name. To me, and to the world, she is simply "Charlie".

Let me start by saying this: Charlie is a total dream boat. She's the kind of beautiful that takes your very breath away. Every feature is perfect, and was from birth. Even the nurses gasped and said that they'd rarely seen such a beautiful newborn.

But beyond her beautiful face is a beautiful soul that radiates from her everywhere she goes.

Seldom a cryer, Charlie spends almost her entire day in smiles and giggles. Even when she does cry, she often smiles through the tears as if to tell you "It's ok! I know you are trying to help". Unless she ie exhausted or hungry, she spends her life in a perpetual state of happy.

She is in love with people, and unabashedly shines adoration upon anyone who is willing to pay her a little attention. She has a particular soft spot for children, who seem drawn to her. Rarely does an outing go by where I am not stopped by a young child pulling on my arms, asking me to see her.

While very outgoing and loving, Charlie is an intensely attached to me. She rarely wants to be out of my arms for long periods of time and insists on being held as often as humanly possible. But as she gets older, she is discovering the joys of independence and is slowly releasing her vice-like grip. ;)

An avid music lover, Charlie has been instantly soothed by song since her first hour of life. Her favourite seems to be the theme song from Bonanza, but only when Daddy sings it. ;)

By four months, she was already "singing along" with me and has been working hard on forming her first words. She's even said "mama" a handful of times...but I'd be lying if I said I thought it was intentional. ;)

In many ways, she is already night and day different from her brother. But they have many similarities too, and she is crazy about her big bro. She wants to be just like him, and has decided to start by being a night owl. Even as I type this, nursing her in bed, she is looking up at me with gleeful eyes and a half smirk on her lips.

I could never have dreamt that I would be able to love another child as much as I love Sammie. What I didn't know is that the miracle of a mother's heart is its ability to grow exponentially in size, making room for new loves, adventures amd experiences without ever giving up on the old ones.

I've only just begun the journey of discovering Charlie, amd every day brings new joys along the way. I am eternally blessed for the gift of her, and fall even more madly in love with her every day.

Mama Zita

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...