2013 In Review

2013: A year in review

Amazingly enough, this is a tradition that dates back 8 years! Welcome to the 2013 edition.

Sum Up Your Year In A Nutshell: 

2013: Last year, I ended this post by saying that "2013 will have its work cut out for it if its going to top this one." Amazingly enough, I think it did. This year was one of the most eventful, exhausting, amazing years of my life. I have become a better mother, friend, wife and person than I ever thought I could- and have learned that I still have much work to do on all those fronts before becoming the person I really want to be.  This was a year of birth, of renewal and of growth. It was also a year of endings, of turbulence and of hardship. It was an exceptional year on all fronts, and I'm glad it's over. ;)

1) What did you do in 2013 that you have never done before?

Held my daughter in my arms. Charlize Andree-Anne was welcomed into our family on February 20th, 2013. 

2) Did you keep your New Year's Resolutions and will you make more next year?

Last year's answer: Yes, and no. (See next post). I will be making new "resolutions", but these are more guiding principles than actual tangible goals.  The one thing I am learning to (slowly) accept is that life has a way of handing you unpredictable hurdles and that- while goals are important- focusing on flexibility and adaptability are more important life skills for me than accomplishing specific tasks. 

This year's answer: I think that, for the most part, I met the goals I outlined for myself last New Years. I have come a long way in terms of flexibility and rolling with life's punches.  

My "word" for the 2014 is "ADAPTABILITY"- this has also become my life's mantra.  It's a life long journey, but I have the two best tour guides in the world ;)

3) Did someone close to you give birth in 2013?

Yes! SO MANY BABIES! 

Mine was the first of the 2013 babies in my life, but quick on my heels were baby Hailey, baby Ethan, Baby Sophia, and Baby Flynn (to name just a few from my closest friends). 
4) Did someone close to you die?

No one close to me died, but I did feel the grief of friends of mine who lost their loved ones this year. My heart continues to with them.  

5) What countries did you visit?

This was the first year in forever that we didn't go anywhere. Like, we didn't even leave central Alberta except for a few trips to Stettler and Calgary. Wow. We're lame. Also, traveling with Sam is a task easier said than done.

6) What did you lack in 2013 that you would like more of in 2014? 

Time. I never seem to have enough time.

7) What dates from 2013 will remain etched upon your memory? 
February 20th, the day my heart grew two whole sizes!

Also, Sam's first day of school, Charlie's first Christmas, Sam's first Christmas concert, and every single word my son spoke for the first time. <3 Also, this year we finally "officially" welcomed a new sister into our family in a perfect wedding that made me smile from cheek to cheek! 

8) What was your biggest achievement of the year? 
Balancing a newborn, special needs parenting, school schedules, various appointments/therapies, social programming, sensory diets, food restrictions/aversions, taking on a musical, and going back to work has been tremendously difficult. Most days I come out unscathed. That's an achievement, right?

9) What was your biggest failure?
While I'm not sure I would characterize it as a "failure", per say, failing to account for "me" time was something I really struggled with. I definitely need to find the time for the everyday "me" things (she types, as she sits, unshowered and in her pajamas, with a sleeping baby balancing on her lap.)

10) Did you suffer injury or illness?
The "saga" of fertility/pregnancy/labour health related issues ended with a relatively easy  Some complications arising from the birth, but nothing compared to what we had experienced in the past. While it is hard to accept that my "child bearing years" are past me, despite the fact that I would probably continue to have kids until I had my own colony, I know that our family is finally complete with Charlie's arrival.

11) What was the best purchase you made? 
My Blentec was amazing. Going gluten free/dairy free with Sam came with many challenges, the biggest being that we now have to make almost all our food from scratch. I would be lost without that thing. Also, we just got a new Macbook- it was definitely time to retire the old one, which served us faithfully for over 6 years.

12) Whose behaviour merited the most celebration?
This always a really tough one. I am surrounded by some amazing people. But this year, the answer is a LOT easier than it has been in the past. The one person who blew my mind this year with his achievements is unquestionably Sammie. Every day, in every way, I am amazed at the little man he is becoming. He takes on his obstacles with grace and determination, and a presence of mind that many adults would be well served by. While we still have a long road ahead of us when it comes to meeting all of his needs, Sammie's development is a daily reminder that he is EXACTLY who he is meant to be and that his potential is truly untapped and endless. I am so very proud of him, and so much better for having him in my life.

13) Whose behaviour made you appalled and depressed? 
As always, I will not name names nor will I point out one or two people. Instead, I will chose to focus on specific behaviours and patterns that particularly annoyed me this year. 

There is one thing in particular that I have learned that I have little patience for: parents who treat their children as inconveniences to be managed instead of human beings to be loved, respected, and uplifted.  

In the world of special needs parenting, we have definitely been exposed to all types of families and while I certainly can not tell anyone how to live their lives, there is very little more heartbreaking than hearing parents talk about how "hard" or "awful" or "bad" their children are. Yes, sometimes it is definitely challenging to have a child with a disability. But these are not "bad" kids. And you don't deserve praise or a medal for having a "harder time" with them than other parents do. The fact of the matter is that parenting is hard. It is hard for special needs parents and it is hard for non-special needs parents. But it's what you signed up for. You owe it to your children to give it your all, and not blame them for the things that go wrong in your life.

So yeah, that was probably my biggest pet peeve this year.

14) Where did most of your money go?

Actually, we made some surprisingly good financial decisions this year and are ending it consumer debt free. We still spend a lot more on luxuries than we need to, but our priorities have shifted to providing our kids with everything they need. This was definitely the year that we matured into responsible financial adults, and I am really proud of that.

15) What did you get really really excited about?

Overall, it was an exciting year, but the birth of Charlie was the one thing I got "really" excited about. She is a wonder- a true force to be reckoned with. I've never met a person quite like her and I can't wait to see the beautiful woman she will grow into. (But I am terrified of the toddler years, because she has a VERY spirited side to her...)

16) What song will always remind you of 2013?
"Twinkle Twinkle Little Star"- the first song Sammie ever hummed intentionally. Hearing him sing, with absolutely perfect pitch, was one of the greatest moments of my life.  This is followed closely by "Up On The Rooftop", the first song that Sam ever "joined in" with, giving a hearty "ho ho ho" during the chorus while his dad, uncle, aunt and I caroled down Candy Cane Lane. It was amazing. 


17) Compared to this time last year, are you?
Happier or hardened? Happier. I don't know if I've ever been this happy. And I think most of the "hardened" side of me has softened out, alone with my waistline ;)
Thinner or fatter? Thinner. I was in my third trimester with Charlie this time last year. And, overall, I am thinner this year than I have been in many, many years- and hopefully this trend will continue.
Richer or poorer? Richer- in more ways than one.

18) What do you wish you'd done more of?
I always wish that I would spend more time actually playing with my kids, but the one thing I really wish is that I'd had more one on one with Jason. Charlie is a very high maintenance baby and we only got our first date night in December of this year. Even then, it was short and very stressful for her (and my poor mom, who had to listen to her cry.)  I am looking forward to getting some more time with Jason as Charlie becomes a better sleeper...fingers crossed.

19) What do you wish you'd less of?
I wish I'd spent less time arguing with strangers on Facebook. I have this "debater" side to me that constantly feels the need to discuss every topic, no matter how futile the discussion. This has caused me a great deal of unnecessary stress and it is something I plan on better managing next year.

20) How did you spend Christmas?
Surrounded by my family and friends. It was a lovely holiday, filled with "ho ho ho".

21) Did you fall in love in 2013?
More and more every day. I could not be more deeply in love with my husband if I tried, and I am deeply grateful for the life we have built together.

22) Any one night stands? 
Nope.Ha ha. This question makes me laugh every year. I've never really been the "one night stand" kind of person to begin with.

23) What was your favourite program?
I'm a creature of habit, so my favourites are the same every year (West Wing, Lost, 24, Community, etc.) but I did greatly enjoy watching "How I Met Your Mother" this year. I also have a seriously guilty pleasure for "Gossip Girl"- it's like a flashback of all the trashy teen novels I used to love as a kid. 


24) Do you hate anyone now that you didn't hate last year?
I have released myself of hatred. That sounds corny, but it's true. I did end several relationships, some with more sadness than others, but I have absolutely no ill will towards any of them. 

25) What was the best book you read?
I admit- I LOVED the "Hunger Games"...

26) What was your greatest musical discovery?
 This may not be the answer this question is looking for, but this year I "rediscovered" my love of musical theater and stage work and will be beginning 2014 with "Tales of Two Cities". I'm definitely dusty and rusty, but am having a wonderful time with the production.

27) What did you want, and get?
Baby, out on the outside of my belly. Mission: Accomplished. ;) Also, a new espresso machine. This sleep deprived mom needs all the caffeine she can get.


28) What did you want, and not get?
Not much, actually. We are finally in a place where if we want something, we can get it. Though we did buy a whole bunch of new flooring which we haven't had a chance to put in yet. So yeah, that's annoying. 


29) Favourite film of this year?
Man, I really didn't watch many movies this year. I enjoyed "Les Mis", for the nostalgia more than the performances. I thought "The Sessions" to be really moving as well. And my drunken, live tweeting marathon of Twilight was epic and awesome. 

30) What did you do on your birthday and how old were you?
We went swimming to Servus. It was all very dramatic- my brother's badge got stolen and police got involved. It was crazy and chaotic. But all turned out well and the badge was recovered.


31) What is one thing that would have made your year immeasurably more satisfying?
More sleep. The lack of sleep definitely made this one a more challenging one than in the past. May was particularly difficult, as Sam's sleep had regressed down to 2 or 3 hours a night, total. But since going gluten free, we have seen massive improvements on this front. Now, if only we could convince his sister to follow suit...


32) How would you describe your personal fashion concept in 2013?
Um. "It's clean. It'll do." I finally bought myself an ENTIRELY new wardrobe last week. I will be starting off 2014 by purging any piece of clothing that is older than 3 years and/or too damn big for me.

33) What kept you sane? Family, friends and Sammie and Charlie's awesomeness.

34) Which celebrity/public figure did you fancy the most? I don't really have celebrity crushes. They really aren't my thing.

35) What political issue stirred you the most? 
Probably the Remand Strike. Followed closely by the overly dramatized "Fatal Care" series, that proved to me that journalists care more about themselves than the safety of our most vulnerable population. Many idols fell that week...

36) Who do you miss?
My dad. And my family/friends who are far away.

37) Who was the best new person you met? 
I met many amazing new people, most specifically linked to Sammie's school. But the one person who has made a huge impact on me this year is Grace Wong and her amazing son, Marcus. Having the support and advice of a parent who has journeyed this path before us has made an incredible difference in my life.

38) Tell us a valuable life lesson you learned in 2013:
As I did last year, I will sum this up with a few quotes:

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg.” ― Paul Collins

"A daughter is a miracle that never ceases to be miraculous...full of beauty and forever beautiful...loving and caring and truly amazing." -- Deanna Beisser

"
I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close." Pablo Neruda 

39) Quote a song lyrics that sums up your year:
.
"Everything (Between Us)" (Liz Phair)

We have everything we need here
We have everything between us
You have nothing left to fear dear
Cause it ain't ever gonna leave us

We might get a room downtown now
Get away for a half day
We might drave a car to the next town
Get away from our family

Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you
We have everything we need here
We have everything between us

You have nothing left to fear dear
Cause it ain't ever gonna leave us

Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you

Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you

Let your body move real slow
Tell your body we left yesterday
Let your body hold me close
Let your body move you

We have everything we need here
We have everything between us

He shines

Every minute of every passing day, I am rendered speechless by him.

He shines, brighter than the sun, breaking through the darkness between us to touch my spirit and my soul.

One by one, the smiles become brighter. His focus is more present. His eyes are somehow more aware.
He looks at me and his gaze sends shivers down my spine. He sees into me, through me, and I see myself through him. His hand reaches out to mine- a connection so real, so tangible.

Every day, more and more, my son chooses to step out of his world and into mine.

We connect and are one with each other, happily co-existing...different but complimentary, built for each other, despite our different outlooks and understandings. There is a growing peace between us. I no longer fear this unknown journey. He reminds me to always have faith that we are exactly as we are meant to be, perfect in our imperfections.

He is happiness, incarnate.

Today was Sammie's first Christmas concert.

It may sound mundane to some, but for me this was a milestone that I have dreamt of since I first began to envision my life as a mother. To celebrate family, peace, love and laughter with my child is, to me, the very essence of what it means to be a parent. It is a time that unites us and where every miracle seems possible.

Today was one of those days that reminded me of just how far we have come on our journey together. Today was filled with miracles.

As I walked into the crowded room, literally bursting with noise, excitement and anticipation, I made a rookie move. I couldn't help myself. I desperately wanted to see my boy- to show him that I was here, ready and waiting to celebrate this happy occasion with him.

It didn't take me long to find him, squirming in the arms of his aid, his piercing eyes taking in all the activity around him.

His eyes found mine, and we connected.

I was thrilled and waved enthusiastically to him! "Hi baby!"

It took him a second to register what was happening...Mom was here!

And he decided that he DESPERATELY wanted to say hi as well.

Of course, this wasn't the time for visiting. Sammie had to wait with his class. They were the first the go on the stage, and he needed to be ready.

And so there were tears of anger and frustration at being held back from coming to welcome me.

I'll admit, a part of my heart broke watching him struggle. I wanted to take him into my arms and reassure him that everything would be alright.

But there was also a part of me that was joyful. He *wanted* me. He *needed* me. He knew that I was there, was aware of me despite the crowd, and wanted to come to me.  And while I wish he didn't feel so frustrated in that moment, my heart soared at the knowledge that he knew that he belonged with me.

There is always a silver lining....

I would like to say that the tears passed quickly. But his frustration was not abated by any of the efforts of his skilled team. My little guy knew what he wanted and would not settle until he got it. So he struggled his way though his song (Up On The Rooftop) and at the very end, gave a big smile when he was finally released. He ran into my arms for a great big bear hug!

We spent the rest of the concert together, dancing, holding hands and playing games with each other as the other classes did their presentations. When he felt overwhelmed, he rested his face into the crook of my neck, the way he did when he was just an infant. He found his safety and security in me.

And from the moment he jumped into my arms, no tears were shed.

Parenting expectations are funny things. I know many people who would have been frustrated, even angry, at their children for being "that kid" who cried through the entire song. I know many parents who would have been disappointed that his bow tie was crooked or that he had peanut butter in his hair.  I know many parents that would have wanted to see him, sitting peacefully and obediently beside his teachers, waiting for his turn to be called.

In a different time, at a different place, I might have felt the same way. In fact, I know that I would have.

But if there has been one gift that I have been given in this unexpected parenting journey it is this:
Reality far exceeds expectations, if only you learn the cherish the what is instead of the what might have been. 

We do not count the beads of sweat on the face of the victorious marathon winner.

We do not

The victories in life happen when and where we least expect them.

I dropped the ball...ish

Well, sort of. I quit before the end of my NABLOPOMO challenge last November. I didn't forget about it as much as I consciously decided to step away for a few weeks.

The thing about blogging is that it is therapeutic for me. It is a place where I can organize my thoughts, share my feelings, and record the memorable moments of our lives.

But sometimes, it isn't therapeutic. Sometimes it is stressful and too much. And when it is, I take a step back- from the blog, and usually from social media in general because I find that the two go hand in hand. I don't step back because the blog makes me unhappy, but I do step away from it because it is time consuming. And if I am "unhappy", it almost always means that I have been misallocating my time and messing with my very delicate life balance.

So I walk away for a week. Or two. Or a month. Maybe more. It doesn't matter.

What does matter is what I do instead.

Last month, instead of blogging, I snuggled with my husband.

I read stories to my babies.

I had long phone dates late at night with my friends.

I drank a few too many glasses of wine.

I put up my Christmas tree.

I cleaned out my storage room (a project I've been procrastinating on for years).

I bought all my Christmas gifts.

I watched some favourite movies.

I took some long baths.

I spent too much time stressing about politics.

I visited with my family.

I played trains with Sammie.

I taught Charlie how to clap and how to say "HUZZAH" when she is excited.

I slowed down.

I made memories.

And, slowly, I started to feel better and I started to take control over the things that were causing me unhappiness and stress.

Because as therapeutic as this space is, there is no therapy greater than spending more time with the ones that I love.

So now I am back, and I'm doing another "challenge" (which I will write about right away). I can't promise you that I will be faithful to it, but I can tell you that I am going to enjoy it.

And if I don't, I will simply walk away and live to blog another day.

:)

Shadows

An old friend posted on a link that I shared over Facebook last night. The link spoke of Synesthesia, a phenomenon that I have been closely observing with Sammie since he was an infant. Synesthetes have a fascinating sensory perception condition in which the stimulation of one sense triggers unconscious and involuntary reactions in the other sense. So some synesthetes "hear" or "taste" colour, "see" music, and "taste" light.  Recent studies indicate that Autistics are 30% more likely to experience synesthesia than neurotypical people, and it is definitely something I have picked up on with Sammie since, as a very young child, he appeared to try to "touch" light and "sounds" and still covers his eyes and ears when there is a smell in the room he doesn't like.

My friend commented on his own experiences of heightened/stimulated perceptions, and I found myself so curious to ask him more about it. I was just about to send him a private message, when I stopped, fingers still set to type.

Where does one even begin?

You see, where once upon a time we were actually quite close, my friend and I haven't seen each other in around 8 years.  Almost 3000 days....

I've followed him- from the comfortable distance of Facebook- as he has explored the world, fallen in love, become a father....

I've followed and read with intent curiosity his shares about politics, food, and life in general...

I've laughed at some of the comments which remind me of why we were friends in the first place...

I've smiled, sensing very much that he is happy and exactly where the Universe wants him to be...

But it has been years since I have said 'hello'. So long, actually, that I'm not even sure where to start.

You see, I'm not entirely sure the person he was once friends with still exists.

While I do know that most people grow, change and evolve over the course of their young adult lives, I'm not entirely convinced that most do it with such a strong-handed division between who they were (and thought they would be) and who they are (and have become).

I can trace back, to the day, the moment that my life got split down the middle: Zita of Then Vs. Zita of Now.

February 5th, 2010. I was 19 weeks pregnant with Sammie and received a call at work from my doctors office. He was just about to leave for Mexico but "needed to talk to me before he left" because he didn't want another doctor to have to give me the news.  The ultrasound had come back with signs of severe abnormalities. The child that we had coveted for so long, that we had risk so much for...the baby was sick. 

The whole conversation seemed to take place in a blur, but I remember every word. 

"You're going to have to decide what you want to do. You only have a few weeks if you want to terminate. We can wait and see what happens, but that will make it harder for you to act if you decide that you don't want to go through with this. What you need to know is this: the baby will probably not survive the pregnancy, and if it does, it will likely have a limited quality of life. And you are also at risk- this could be very dangerous for you."

My heart stopped beating. And for that moment in time, all I could hear was the blood pulsing through my head....and something faint behind it. Another heart maybe? My baby's heart. 

There was nothing to think about, nothing to consider. 

I knew that I would risk my life for this baby. That I was prepared to die so that he might live. 

I went home and talked to Jason, already knowing he would agree. We would fight for our child. We were his parents. It was our job to keep him safe. 

We named him that night, knowing that we would want a name in case we had to bury him prematurely, inspired by the book of Samuel, verse 27: "For this boy I prayed, and the Lord has given me my petition which I asked of him."

On that cold day, almost four years ago, something shifted inside me and I would never quite be the same again. I realized, in a real and tangible way, that there was nothing- NOTHING- I was not prepared to do for my child, and with that realization, I walked away from the selfish young adult I had been and entered a whole new world of understanding that self-actualization only comes when the self is no longer the principle focus.

Prior to that day, I had already been a friend, sister, daughter and wife. I had already loved people, many unconditionally, and had fought battles to protect them and our relationship.

But there is something slightly different between saying that you are prepared to die for someone, and actually signing a document stating that you would like another person to be saved before you are.

On that day, I knew that I would never be the same. That every hope and every dream I had would be placed on hold- possibly indefinitely- while we awaited the outcome of the pregnancy and birth.

The rest is history.

Since then, one day at a time, the person that I used to be slowly became replaced with the person I have become.

My perfect, immaculate parlour with baby blue furniture? Covered in raspberry finger prints.

My dreams of becoming a corporate lawyer? Replaced by working from home, usually during nap time.

My business suits and designer glasses? Replaced by yoga pants to make floor time more accessible.

My love of food, and obsession with restaurants? Replaced by a mostly pesticide-free, dye free, corn/soy/msg/gluten-free, casein/dairy-limited, modified Paleolithic Diet. (Yum!)

My ambitions for wealth? Replaced by hope for government supports for families with disabilities, and a sincere understanding of just how good we've "got it".

My son's Registered Education Savings Plan? Replaced by a Registered Disabilities Saving Plan.

My vision of a wet-bar in the basement? Transformed into a Snoezelen Room and Gross Motor therapy space.

My idea of a perfect Saturday night dinner? One where Sammie actually eats what's on his plate.

My dream Christmas gift? A maid service. Seriously. How awesome would that be?

My Friday mornings? Meetings and training seminars with Speech Therapists, Occupational Therapists,  Developmental Psychologists, and teachers.

My super huge, pillow top mattress? Not so huge now that I have another baby snuggled up beside me.

My days of wild-child style partying until 5 am? Ha ha. Last night, I was breastfeeding at 5 am. :P

My life? Absolutely perfect, and I wouldn't change a thing. 

But it isn't where I thought I would be, and I doubt it's where others would have predicted me to be either. Sometimes I look back and am amazed by just how far off my original path life has taken me.

And so, in moments like last night, I think back to the those friendships of the past and wonder- would they- could they- have changed with me? What would we say now if we were face to face? Would we have anything to talk about? Or would we have so much more to say now than we did before?

There are a handful of people who walked the last five years by our side. We've lost many friends, mostly due to the significant changes I have described above. Many people don't understand. Many people are scared of the life we are living. Special needs parenting is not for the faint of heart.  It is full-on, 24/7, intensive and unabashed adoration of another human being (and in our case two) with almost no respite and minimal support.

There is very little room for "you" in this world.

And the "you" that there is room for is a very different person than the one you knew before.

I didn't grow, or evolve,  or develop.

I changed. Black and white, from one day to the next, overnight.

Pre-Sam Zita is a distant memory. All that is left are the shadows of the life I thought I was meant for.

There is no regret or sadness, though there is sometimes a tugging nostalgia.

But I'll be honest with you, I like this "me" a lot more than I liked myself back then.

And I have a suspicion that, if ever we were to meet again, my friend would too.

Maybe that's why we were friends in the first place.

Out with the old

I have been cleaning out my storage room for 13 hours, practically straight. I am seeing double, my legs are throbbing and I can't feel my toes.

All of that to say: no post tonight.  :(

Cop Out Post

I am copping out tonight. I am supposed to be writing about being a team player...and I will. Tomorrow.
For tonight, let me sat this: Being a team player sometimes means knowing when to focus your energy on your team mates so that you all have something worth fighting for tomorrow. So tonight, I'm snuggling with the hubby, eating nachos and watching Survivor. The blog can wait. ;)

#33: Lessons from the playground. (Another spin on getting along).

(Please read the background to this post here: http://www.autismorsomethinglikeit.blogspot.ca/2013/11/writers-block-33-7-17-47.html)

Topic # 33: Lessons from the playground. Another spin on getting along.

He stares out the window with a depth and soulfulness that makes me wonder if he is actually taking in every shade of refracted light stemming from the droplets of condensation on the window. 

He is so still and so quiet. And yet so present and aware. 

We pull over to the side of the road, where the green grass exceeds the height of the cement marker used to instruct me on where to position my car. I pull him out. He looks down at the ground. I can almost hear his thoughts "Mom parked on the yellow line again. Doesn't she know she is supposed to park between the lines, not on them?"

From the distance, I hear the voices. Laughter, squeals, and screeches of delight. Someone shouts "No Fair!"  I hear an adult voice loudly drowning out the other sounds: "Tommy! Leave your brother alone!"

He doesn't raise his head, but cocks his ear as if to acknowledge that- yes- he hears them too. More than that, he hears the sound of the wind floating across the wings of the birds that have taken flight overhead.  He hears the buzzing of the bumblebee as it hover over its conquest, embracing into its bosom the sweet nectar of life. He hears the rabbit, perched merrily on top of a mound of dirt, gleefully gnawing on a blade of grass

"But- yes, mom- I also hear the voices. I know that they are there." 

I look at him, waiting for a cue. He does not ask to go back into the car. I can press him further.

"Sammie Baby, it's a beautiful day! We are at the park. Would you like to play here for a little while? I can push you on the swings if you'd like."

I pause, waiting for an answer that will not escape his lips. I watch his face and body closely, waiting for the slightest movement to betray his heart's desires. 

It takes him a moment to lift his eyes and take in his surroundings. 

Slowly, he looks around, examining the environment and assessing the situation. 

He glances at my eyes. 

Briefly, then its gone. 

That means yes.   

He lets me take his hand and smiles. He knows I've understood him. He likes that we just "get each other". I wonder if he knows how hard I work at it...

The park is overflowing with joyful faces, young and old. There are blankets laid out for picnics, and shoes casually discarded in the sand. The older boys and girls are taking turns leaping off the top of the slide, as their parents pretend not to notice and attempt to conceal their anxiety. 

He is thrilled. He loves people and activity. He loves to watch them play. He wants to play too. 

He doesn't know that he doesn't know how...

He races off, faster than I expected. I run after him, carefully craddling the baby's head so that she doesn't get hurt as I bound as quickly as I can after his nimble feet. 

He stops in front of a group of kids, probably two or three years older than he is. 

They stare at him. 

He is different. 

He stares at them. 

They are different. 

He doesn't care. He smiles. He laughs. He hums. He jumps. He flaps.

When we don't have any words, we have to show joy with our body. 

The children continue to stare. 

"What is he doing" they ask me. 

"He is saying Hello" I reply.

And then he starts to spin. 

I hold my breath. I am being watched. I know that my cover is blown. We've been exposed. The panic rises and, all of a sudden, I feel like I am fourteen years old again, terrified of being picked last for basketball. 

"Leave that little boy alone" A mom calls out, from a safe vantage point in the shade. 

And the world stops. 

...

He spins

...

I am frozen

...

He spins

...

They are staring

...

He spins. 

...

"Ha ha! He's getting so dizzy! I want to try! I can spin really fast too!!! Watch me!!!"

...

What?

...

And now there are two. And soon three. And then four. And they tumble to the ground in a heap of giggles, their heads reeling from the sensory overload. 

"Wow. He's a really a good spinner. He doesn't even fall down. Come on, let's go down the slide."

He stops, and watches them go. He is smiling when he looks up at me. He wants to go on the swings. It is must quieter there- no one else is around. 

We stay, swinging away, just the three of us for another hour and I watch as, one by one, the group starts to dwindle down to nothing. It must be dinner time. 

He takes my hand, and we walk back to the car together. And as I lift him up into his seat, I pull him close for a hug and whisper "Sammie Baby, it sure is a beautiful day."

Writer's Block: #33, #7, #17, #47.

I have writer's block. This always happens to me at around days 18-21 of my month long challenges. I sit, staring at my computer, with no idea what to write.

I took on this project, not to just write gibberish, but to actually force myself to connect with myself- mind and spirit, working together to sort out some of the information overload I've been facing lately. So I'm not interested in doing "just to write" posts. I want to write something meaningful everyday- or at least meaningful to me.

So, I tossed it out to the interwebz: Give me a number! (between 1 and 125)

And I got 33. And then 7. And then 17. And then 47. (lots of 7s there. Interesting).

So, for the next four days, I will use this list of 125 Blog Topics to guide my writing.

Wish me luck!

This is how we build an identity

If you had asked me two weeks ago "What is autism?", I doubt I could have put together much more than a pseudo-medical breakdown of its symptomology. It just wasn't a question I had asked myself very often- it was something I'd always accepted as "It just is."

And then this happened.

And then this.

So I wrote this.

And I read this.

And this.

And this.

And so many more stories that moved me. 

And, much to my surprise, a new part of me was born into a community that I never knew existed. Or rather, I knew that it was there- I just didn't know that I belonged there too.

Over the course of the day, my heart swelled with joy, my eyes filled with tears, my soul soared to the clouds.

These are my people.

This is my home.

Those with autism. Those who love them. Those who teach them. Those who nurture them. Those who advocate for them, and for themselves. Those who see a brighter future and a world full of acceptance and diversity.

They are me. And I am them. 

Today, I discovered a new part of my identity.

I suppose you never know who you are until someone attempts to mischaracterize you.

I was put here, in this time and in this place and I can choose how my life is spent.

I choose to spread love.

I choose to see hope.

I define myself by what can be.

I choose to do more than just "survive".

A huge thank you to the creators of the This Is Autism flashblog for bringing us together as one united voice for change. And a sly thank you to Suzanne Wright, of Autism Speaks, without whom none of this would have been possible (or necessary). 

On Neurodiversity: A poem

You say you oppose
Neurodiversity
As if- somehow-
The billions of unique personalities
On this planet
Are housed in our ankles and elbows
And not in
Our minds

Our brains flash at different intervals
Pulsing with different electricity
Who are you to say your wiring
Is superior to mine

Or to my son's?

Do only brains that look like yours
Enjoy a quality of life?
How do you begin to measure
Where the animal ends and the person begins?

You say I support
Neurodiversity
I ask you
As opposed to what?

My contribution to the "This is Autism" Flashblog

This blog post is my contribution to the This Is Autism flash blog. 

We read every label. 

We avoid foods that upset him. 

We supplement with nutrients, vitamins, minerals, secretly hidden in his juice boxes  

We stress about his diet. 

We worry about whether he will eat lunch. 

We bulk buy the half dozen foods that he enjoys, only to wonder why he won't eat them. 

We cover every food imaginable with peanut butter, in hopes that he will cave.

We avoid restaurants, knowing there will be nothing there he will tolerate. 

We rejoice in every new food he tries and reward him with praise and love. 

This is parenting Sammie. 

We follow a strict bedtime routine. 

We hope every night that he will follow it too. 

We watch him on the monitor, hoping that he will stay safe. 

We cringe every time he sighs and moves in his sleep. 

We settle the baby who woke up when he cried. 

We wonder why he can't seem to calm his body. 

We agonize over his exhaustion when sleep goes awry.

We struggle with whether or not we should use a sleep aid.  

We haven't had full night's sleep since he was born. 

We celebrate every time he sleeps through the night. 

This is parenting Sammie. 

We dim the lights. 

We monitor noise levels. 

We plan every outing, carefully scanning the environment for triggers.

We cut off tags and cautiously select fabrics. 

We wonder where his shoes and socks have gone. 

We built a dark, sensory room. 

We built a fun, gross motor room. 

We bought a trampoline, a swing set, a slide, an indoor hammock. 

We stock up on toys that he will never play with.

We hope he might change his mind. 

We wonder when our house became a jungle gym.

We follow a sensory diet, and regret when we get off track. 

We hold him when he breaks down because it's all become too much. 

We agonize over his meltdowns, and are filled with guilt and regret. 

We have gotten injured. 

We have watched him injure himself. 

We accommodate the needs of his body. 

This is parenting Sammie. 

We analyze every movement. 

We wonder if it is developmentally appropriate. 

We laugh when we watch him spin in the kitchen.

We feel exposed when he does it in the mall. 

We tell people that he speaks with his body. 

We reenforce that behaviour is communication. 

We offer alternatives to busy his hands. 

We know that we are judged. 

We want him to express his joy. 

We wish he could do it with words. 

We seek out people who "get us". 

We surround ourselves with people who get him. 

This is parenting Sammie. 

We seek out his eyes. 

We relish every look, every smile, every laugh. 

We constantly try to keep him engaged. 

We are overcome with guilt when we can't. 

We are thrilled that he has friends who love him. 

We know that we are very lucky. 

We worry that, soon, they won't understand. 

We are scared that they will abandon him. 

We are terrified that he will be lonely. 

We wonder what he is thinking. 

We wonder what he is feeling. 

We wonder what he would say, if only he could say it. 

We manage out expectations. 

We understand that the future is uncertain, for him and for us. 

This is parenting Sammie. 

We research GPS location devices. 

We have the police department programmed into our phones. 

We walk a fine line between over-parenting and allowing him to grow.

We want him to feel safe. 

We wish he understood fear. 

We know that water is his favourite friend. 

We know that water is our enemy. 

We know that he loves to explore. 

We lock all the doors. 

This is parenting Sammie. 

We feel his love in every hug and every kiss. 

We hear his love in every song. 

We believe that every word is a gift. 

We bear the responsibility of managing the world. 

We know he can not manage it without us. 

We seek out answers to mitigate his negative symptoms. 

We encourage him to explore and expand on his strengths. 

We count our pennies. 

We budget for unforeseen expenses. 

We see doctors, therapists, specialists, teachers. 

We are overwhelmed with information.

We juggle the needs of both of our children. 

We wonder if we are failing him. 

We wonder if we are failing her. 

We love our son for who he is. 

We do not try to change him. 

We try to understand him. 

We try to help him. 

We wonder if we are. 

This is parenting Sammie. 

We cherish every day.

We think he is the most interesting person in the world. 

We tickle him until he cries from laughter. 

We snuggle and watch Shawn the Train. 

We hold hands while walking down the street. 

We babble back and forth in the car. 

We stare adoringly as he plays with his sister. 

We cheer him on when he punches in karate. 

We love to take him swimming. 

We love to take him to the play gym. 

We love to take him everywhere. 

We read stories. 

We trip on trains. 

We shake our heads in amazement at everything he can do. 

We speak his language. 

We know that he understands ours. 

We hang his artwork on the fridge. 

We play peek-a-boo. 

We sing silly songs to him. 

We go along with his silly jokes. 

We are proud of him every day. 

We know that there is nothing he can't do. 

We look forward to the future. 

This is parenting Sammie. 

We cry. 

We celebrate. 

We analyze. 

We grow. 

We learn. 

We spread awareness. 

We support each other, and others like us.  

We struggle.  

We thrive. 

We do so much more than merely survive. 

This is parenting Sammie.

We can not tell you what Autism Is.

We are not Autistic.

We are the supporters, the cheerleaders, the co-advocates, the friends, and the family.

This is parenting Autism. 

Testing waters

Tomorrow, we go on our first overnight trip in almost a year. It used to not be a big deal- after all, what difference does it make where your kid sleeps, when he only sleeps a few hours a night regardless?

But now the game has changed. For the past few months, we have had Sam on a sleep routine that actually works for him and he sleeps, on average, 10-12 hours a night.  As you can imagine, this was a game changer for our family and the sleep has been the best change in the past year.  But, we are gun shy. The fear of regressing back into that world of sleeplessness hovers over us like a shadow, reminding us of the horror of genuine sleep deprivation.

So, tomorrow we test the waters. We are packing all the "safest" foods. We are bringing all the comfort objects. We are prepping ourselves psychologically, and picked a suite in a hotel with a pool to give him full gross motor and sensory exposure.

And we are fully prepared to pack up and head home in the middle of the night if this all proves to be the worst experiment of all time.

I am all kinds of nervous right now.

But I have to put my faith in my kiddo and his resilient, adaptable nature. And I have to remind myself that he always has an uncanny way of surprising me when I underestimate his ability to adjust to the unknown.

But, just to be sure, I'm also packing the melatonin. ;)

Jungles of the Mostly Unknown

There are a lot of cheerleader-style inspirational memes floating around the interwebz extolling thr virtues of the "autism parent".

Most of these make me smile and have even pushed me to persevere in rough times. But every so often, these happy messages cross a line with me because while the message may seem positive and empowering, sometimes they do so at the expense of empowering our children.

There are two main messages that I take issue with:

1) I am the only "expert" on my child/I am my child's best advocate types

And

2) I am my non-verbal child's "voice".

These are two ideas that, while altogether pleasant as far as catch phrases go, have deeper implications that concern me.

Why, you ask?

Because we would never make that claim about another human being that wasn't disabled.

I would never say: "I am the expert on my husband." This would imply that I know him better than he knows himself. It would also imply that I am omnisciently aware of his thoughts, opinions and beliefs- many of which he has not necessarily shared with me.

Don't get me wrong. I know my child. Really well. Way better than some doctor off the street who has seen him for an hour total.

But I only "know" what I am shown. No one has access to the inner mind and soul of another human being.

I know that Sammie is resistant to new foods. I know that this is often because of sensory issues like texture. But I also know that I make a lot of assumptions about what he experiences based on what I see.

Only Sammie knows what it is to be Sammie.

The only "expert" on my child is himself.

Likewise with being his "best advocate". I may well be the most well positioned to advocate on his behalf, but I am a poor substitute at best for what he could (and does!) accomplish as a self advocate.

Sammie knows what he needs. He just doesn't currently know how to put these needs into words and phrases that our social institutions understand. So he turns to me to act as his interpreter. And I do the best I can to translate his language into English (or more accurately into 'policy'). But, as is often the case with parents of non-verbal children, a lot of this winds up feeling a lot more like incovering some ancient lost language than it does like actual translation. I speak "Sammie" but it isn't my mother tongue.

Which leads me to my major beef:

I am NOT Sammie's voice.

As mysterious as his language may be, it is there. Sammie speaks, in a variety of ways, and his voice is very clear if you know how to listen.

To claim to be speak for someone else without having rhe ability to ask them a) for their permission and b) if your interpretation is correct strikes me as condescending and arrogant at best.

As "autism parents", we do ourselves no favours by pretending to have all the answers. Moreover, when our children hear these types of statements, what they are hearing is that who they are is only as important as who we think they are. We strip them of their individuality and sense of self determination, two of the most important qualities they have.

I have always thought, and will continue to think of myself as a tour guide, leading others through the wild safari that is Sammie's world. I have a road map, but it is still largely new terrain. It's a foreign land, and is sometimes scary, but it is always an exciting adventure into the "mostly unknown".

But he remains the King of his jungle.  ;)

(Mostly) Wordless Wednesday: The Most Beautiful Picture In The World

My son.

My daughter.

Together, in a picture.

Touching each other.

Loving each other.

Looking at me.

There are no words for what this picture means to me, but those who know us know how big a moment this was for Sammie, Charlie and I. <3

Adventures In IPPs

Kids who are in early education programs such as Sam's all get IPPs (Individual Program Plans).  These documents outline the child's individual strengths, areas of development, and goals for the academic year.

I'm pleased to say that, after a month of discussion, changes, accommodations and revisions, I am very pleased with the IPP that the teacher and school have outlined for him.

Our goals this year are as follows:

• By the end of the year, Sam will independently feed himself 3/4 bites with a utensil during lunch time.  (This is a big one for us too. Sam CAN self feed. But he doesn't. He is very food resistent, and when he does self-feed, he insists on using his hands. It has been the cause of much stress...and laundry). 
• By the end of the year, Sam will independently accomplish arrival/departure (pull off jacket and shoes on/off) routine with 70% success, with staff prompting. 
• By the end of the year, Samuel will improve his ability to interact positively and cooperatively with his peers with staff prompting 75% of the time. 
• By the end of the year, Samuel will show increased interest and attention by responding to a communication partner 5 times throughout the school day in a variety of natural contexts. (This includes using the PODD, sign language, words, eye contact, etc.)

Overall, I'm happy with the goals and looking forward to applying them at home as well. 

I just wish that they would add one more goal, for him and for all children:

• Samuel will show a genuine relish and love for life, and continue to be the joyful, well adjusted, talented and intelligent boy that he has always been almost all of the time.

Sometimes, it seems to me that we've forgotten that the real goal of all of this should not be the ability to comply and meet standards, but instead to ensure that each child feels loved, secure, and cherished so that they can learn to thrive in life above all of our wild expectations. 

The school can have their IPP, but I'm always going to keep that one goal at the very front of my mind. 

Everything else is semantics. 

Guest Post: Auntie Erie was taken by surprise

Tonight's post is my first guest post. I never anticipated or sought out guest posters since this blog has been more of a diary to me than anything else. But some stories are too big to be told second hand. They need to come from the source.

Erie has been a part of Sam's life literally since the hour I learned that his heart was beating. She has loved him, for who he is, since before he was born and he adores her.

Thank you, Erie, for sharing this special moment with us.

I've never been so grateful for a messy car. ;)

*******************************************

Today was a bit of a shocker from the start. I hadn't seen Sam since he started his new class. I knew he has been growing leaps and and bounds, I just couldn't fully appreciate it until I saw it. Today Sam was what I so eloquently referred to as "Instant Sam". Sam has always taken a little time to warm up to me. He is amazing and smiley and happy when he does, but the transition time is usually there. Today blew me out of the water. Today he was smiley right off the bat. He held my gaze (eye contact has never been an issue between us, but even my 6-year-old has problems holding my gaze for the full 5 seconds Sam did!) and smiled and giggled. We threw him in the snow, took dozens of pictures, and marvelled at how much he had developed in the last 4 weeks.

Nothing, however, could have prepared me for what happened next.

I took Sam's hand, and for the first time ever, he let me. He held onto it, looked up at me, and smiled. Sam is my buddy, but as I said before, it often takes him awhile to warm up to me. I took his hand and we walked back to the car.

As I lifted him into his his car seat, he twisted as if he was trying to look on the floor of the car. There was a pile of Sam's stuff - jacket, a lunch bag, and several toys. I remarked that he wanted to have a look, and he let me lift him back down to the ground so he could better inspect the pile.

Amongst everything were 3 discarded juice boxes, all empty. I paid little attention to these as I looked around to see if there was a beloved train or book nearby.

"What would you like, Sam?" I asked. I assumed Sam would grab what he wanted, or exclaim in frustration and his mom would offer up suggestions. What I did not expect was for Sam to lay a finger atop one of the empty boxes, and say (clear as day, I might add) "Juice".

The word still rings in my ears, 8 hours later. He did not grab one of the empty boxes, he did not get frustrated that I was taking my time looking for a toy, he did not go around to the other side of the car and get his mom. He gestured at the empty box, and said "juice".

I looked up at Zita in stunned silence. He did not mimic me (I hadn't said the word at all), and there wasn't a "was it/wasn't it" guessing game of the random sound he made. He answered my question in the clearest of manners. I could not get him the juice box fast enough.

Today was more than just giggles and smiles. Today was more than an "Instant Sam". Today was a glimpse into all that the future holds possible for this amazing boy.

Today Sam spoke.

Voodoo Podd: Finding Sammie's voice

So, as I mentioned, we introduced the PODD system to Sammie this week.

It's a big book. And heavy. And it has to go everywhere with him.

So we thought we'd spruce it up a bit.

Sammie is now one cool cat, rocking out his new PODD Guitar.

I used duct tape to give it some pizazz and rigged it up with a Jimi Hendrix "Voodoo Child" guitar strap so we can easily cart it around.

It took forever to make it look "just right", and I spent most of it feeling pretty discouraged by the enormity of having to find my way through this new tool. It is daunting to say the least.

But tonight, Jason used the PODD to ask Sammie if he was tired and wanted to go to bed. Slowly, and seemingly deliberately, Sammie tapped the image that Jason had pointed to.

"TIRED"

Maybe it was coincidence. Or maybe he was just mimicking (which in itself would be a HUGE step in the right direction.) 

But tonight, my kiddo- accidentally or not- clearly told me how he was feeling for the first time ever.

He's a little rockstar, and I know he'll be jammin' this thing in no time.

;)

I need some 'down time'

Life is busy.

Some would even say crazy.

And I love it. Truly. Every second.

But it is a go, go, go existence and tonight, I just need to

Stop.

Take a breathe.

Put my feet up.

Shirk responsibility for a night and enjoy the company of friends

Over a glass of wine

Or six

Who's counting anyway?

Not me.

You will get no words of wisdom from me tonight, save this:

Cherish your friends and the moments you spend with them.

They are the flashlights that guide you on your way to the light at the end of the tunnel.

Goodnight!

He notices her

Out of the corner of his eye, I see him steal a glance in her direction.

They are few and far between, but I notice.

I notice him, noticing her.

Adding a sibling into the mix has definitely been a lot for Sammie to take in.

His whole world got turned upside down, and we definitely had some growing pains. 

Cries of anger. Screams of resentment.

But, day by day, the outbursts of jealousy have started to fall by the wayside.

And, slowly but surely, his gaze has started to take her in.

I wonder what he thinks of her, this feminine mirror image of himself.  I wonder what he thinks when he sees her, adoring him and every move he makes. I wonder if he understands that he is, and always will be, her hero.

I wonder if he knows that she loves him.

I wonder if he has begun to understand that he loves her. 

That despite the chaos of this new world, she is exactly the sister and friend that he needs. 

I wonder if he wonders what she will be like when she grows up. Will she learn to speak? And if she speaks, what will she say? Will he understand? 

Will he respond?

There are still so many questions, but- more and more- the answers are creeping out.

Because he may not have noticed, but I saw him take her hand when she was crying in the car. 

And I saw him give her one of his trains to play with when she didn't have a toy of her own. 

And I saw him smile when she giggled, and smirk when she tried to crawl over him.

He may not have known it, but I saw it all.

I noticed him, noticing her.

Every time, better than the last.

Every time, a dream come true.

(Sammie meets his sister Charlie for the first time, February 20th, 2013.)