Day 31: On endings and new beginnings

Summer is ending, and with it ends the Summer Blog Challenge.

I succeeded in my goal. I posted every day, inane as some posts may have been, and challenged myself to making my own project as much of a priority as the needs in my family.

It hasn't always been fun. It hasn't always been interesting. But I was consistent and, for that, I am proud.

Today also marks Charlie's 7 month birthday. Wow. Time is flying quickly. And yet, somehow, it feels like she has always been here.

Tonight, I end my challenge, and I take the evening to reflect on what the next one should be. Will I blog about my adventures in learning photography? Or perhaps continue to just post daily updates of what's on my mind? Do I continue to push myself to write every day, knowing how therapeutic it is, or should I go back to just letting this space be one that I use when I want to vent or gush with pride.

Tonight, I am too tired to answer those questions. But I know that with the new day and the new season will come new beginnings.

As always, I go to bed truly excited for what the next day will hold for me.

Goodnight, Summer Blog Challengers.

It's been a good season.

Day 30: On renos

Tomorrow, we begin the first of half a dozen huge home reno projects.  The next yeat will pretty much be dedicated to bringing our house up to date and tending to some of the things we've neglected over the past few years.

Our first item is redoing our floors in the main part of the house. The new flooring has been purchased, so now we have nothing left to do other than- you know- tear out carpet and install it all. Piece of cake, right? ;)

Immediately following this, we replace the kitchen/bathroom/hallway flooring and repaint the whole front end. I am really looking forward to getting a fresh coat of paint and brightening up the entire home. I'm leaning towards a pale, butter yellow which would be a stark contrast to our current mocha walls.

I love dreaming of renos but the reality of actually trying to do this with two kids has really hit me today. Thankfully, our amazing family is stepping up to give us a hand with labour and childcare, otherwise it could never happen.

I will take some before and after shots tomorrow and through the weekend to update on our progress.

Here's the great reno list fo 2013-14. It's going to be an exciting (and expensive) year!!!

- new main floors
- new kitchen/bathroom vinyl tiling
- new carpets in all the bedrooms
- paint main house
- repaint garage door
- rebuild and paint fence
- fix bricks at front entrance
- rebuild rails at entry way and stair case
- finish floors in basement
- paint remaining accent wood to match
- fix fireplace

Whoo...that's quite the list when you write it all down.

Scary.

Wish us luck.

Day 29: On a line...

So Sam is sick.

This happens VERY rarely.

So rarely, in fact,  that I was just joking with my bestie that it seems he never gets sick. Jason and I traced it back and the last time Sam had a real cold he was only 2, well over a year ago...

Sick kids are among the world's saddest "everyday stories". It isn't, on its own, particularly interesting.

But what does make this story interesting is how I came to realize he was sick.

Yesterday, Sam had a "quiet" day. Even at school, he seemed to pull away from the routine, preferring to play puzzles quietly in the play tent. This struck me as unusual. Sam is usually quite gregarious, and while he often plays alone, he always seeks out others frequently during his play.

I wondered if he was just tired from the exhausting swim session from the night before, but watched him closely through the night.

This morning, he woke up in a great mood and appeared to be feeling fantastic. At one point, I noticed him wiping his nose but it hadn't really been runny so I brushed it off to the cool weather he had been swinging in.

My friend, A, was over and was going to watch him while I attended a meeting. She mentioned that she wiped his runny nose, but also commented that he seemed fine and brushed it off to the weather. A is one of the most astute people I know, and happens to be an early childhood expert, so I trust her judgment immensely.

And then I noticed the line.

Sam had systematically taken every toy and other random object from the room and lined them up in an orderly fashion on the couch.

Hmm.

Now, this behaviour may scream "autism" to many parents. But that's just not how Sam rolls. The only objects he lines up are his trains. I haven't seen him line anything else up like this since he was barely a toddler.

"Something's not right." I said.

"He's sick."

A appeared surprised by my reaction. Aside from being a little whinnier than usual, he seemed fine.

"I need to keep him from school. This isn't normal for him."

So I made calls, and arranged for Jason to come home from work, despite his general appearance of "fine-ness."

But I knew my gut was right and, within two hours, he was red eyed, stuffed up and running a fever.

I put him down for a nap and he slept 3 hours for the first time since before school started. Upon waking, he spent almost the entire evening in bed, quietly watching his shows.

I ran him a bath with eucalyptus and, before I could stop him, he stepped in fully clothed.

I have one very sick little guy on my hands.

And I knew it when I saw that line.

I can draw a few conclusions from this day.

As I have long suspected, Sam's behaviour depends almost entirely on how he is feeling physically. When he is disregulated, he acts in unusual "stereotypic" ways. But control the biological issues (health, diet, sleep, sensory stimulus) and he is generally asymptomatic, with the exception of being non-verbal.

This furthers my suspicion that the root of Sam's issues lie in the fragile relationship between his brain and his physiology. If his body is out of whack, his neurology is too.

This reenforces the conclusion that behaviour alone can not and should not be the diagnositic criteria for treating his impairments. The root of Sam's issues, while unquestionably impactful on his brain, lies in his body's ability to adapt to his surroundings.

Sam's erratic behaviours are- and must be seen- as symptoms. Not problems in and of themselves, but rather as clues to what the underlying issues really are.

We can not limit ourselves in attempting to control the behaviours. We must continue to ask ourselves "why". What are the environmental and internal causes that are leading to such dramatic differences in his comportment.

Today, Sam felt 'disordered' so he did the one thing he could to create order in the chaos.

He made a line.

And, in doing so, he clued me into his discomfort long before his symptoms could have done so.

Was it unusual behaviour? Maybe.

But it was also brilliant.

My boy, without words, told me everything I needed to know.

I am just grateful that I was paying attention.

I don't care what they say: Behaviour IS communication.

DAY 28: On lifelong learning

Tomorrow, I start a new project. I am taking two online classes. The first is on digital photography basics and the second is on learning how to use Adobe Photoshop.

I am super excited, because I LOVE taking pictures...and with kids as cute as mine, you need a camera ready to go at all times ;)

But I am also excited for the challenge. I love learning new skills and feel that this is an area of my life that I have sorely neglected since becoming a parent.

Don't get me wrong. Parenting is mighty challenging, but it isn't quite the intellectual stimulus I have grown to love from actual "book type learning".

If I had the time, no doubt I'd be working away at my MBA, but given my current reality that goal will simply have to wait.

So instead, I will learn about technology and have some fun while I do. I plan on continuing with my blogging on a regular basis as well, so I will have lots of brain candy for at least the foreseeable future. And that makes me happy. :)

(I have more to say tonight but any other post would have been a violation of the BIG AUS CHALLENGE so they will have to wait! BUT I start work on our Snoezelen room tomorrow and I am super stoked! Pics to follow ;))

DAY 27: On random, crazy Zita stories

I have writers block, so tonight I am offering up for your reading pleasure a top 10 list of little known facts compiled by my husband and hetero lifemate Conor. If it is isn't funny, blame them:

1- I once, in a drunken stupor, broke Jason's coffee table. I "fixed it" by shoving a yoga ball underneath it and later told my husband to be "Shhh...don't tell Jason" before passing out on the floor.

2- I was once almost beat up in the washroom of the Purple Onion because Conor, Jason and I had gone out "skank hunting" and had rather loudly identified a terrifying woman as "Amazon Skank", the rarest of all breeds.

3- I once met Eric Clapton and gave him pointers on how to make "Layla" a better song. (Again, I might have been drinking...)

4- I once told Eddie, the lead singer from Live that everything he wrote after "Throwing Copper" sucked except "Dolphin's Cry". He subsequently bought me a drink and dedicated the song to me during his performance.

5- Kevin Smith once used my cell phone to call someone and tell them to "Fuck Off". He also called me adorable and complimented my flask.

6- If could pick one place to have sex, it would be on top of Elton John's red piano. "He might be gay, but that piano is SO straight." I don't remember saying that...probably because of the rum I'd consumed.

7- I once, while being the only employee on shift, turned on a deep fryer in a restaurant to make myself one mozza stick because I had a craving for "just one". It was at Keegan's, so it's safe to assume that I had been drinking the booze that Jason and Conor had smuggled in.

8- I used to have a crazy habit of hugging random strangers on whyte avenue after a night out at the bar. I once almost got a guy beat up by his buddy becauee he didn't hug me back.

9- My favourite candy is actually called "Crunch Munch and Blow" only because it is the best candy name ever. I consumed a great deal of this wonderful delight after many nights of hosting Karaoke at the scariest bar in Edmonton. 

10- I am worth 5 points on the Gateway Purity Test for 2005. To date, no one has actually offered me a definition of what "being Zita Dube'd" actually means, but I suspect that far fewer people actually deserved those points than those who took them.

There you have it. Moral of the story? I used to be more interesting when I drank more. Or at the very least, less discreet.  ;)

Day 26: On a new challenge...

This is going to be short because I am enjoying a drink and cheese with Jason and don't want to spend any more time than I have to writing nonesense.

But I need to do something, because lately I have lost a bit of my grip on what is important in life.

You see, I vowed to myself that I would never let a medical condition or diagnosis define my children. And on that front, I have been holding my own rather well.

But lately, I am starting to find that something I didn't predict has happened. I have started to allow a medical condition to define me.

I can't remember the last day that went by when I wasn't researching autism, desperately trying to find ways to give Sam every opportunity in the world to be all the Sam that he can be.

And somehow, despite my best efforts, this word, this ill defined concept, has slowly taken over my brain.

It's all I think about.

Sometimes, it's all I talk about.

And when I'm not talking about it, it's still there, like a rat gnawing away at my subconscious mind.

I need to get a grip.

Autism doesn't define my life. It doesn't control it. It is part of my parenting journey, yes. But it should not be the biggest part.

I am letting this word rob me of just enjoying my life as a mother.

So I am issuing myself a challege: The BIG AUS CHALLENGE to be precise.

For the next 72 hours, the word "autism" and its evil cousin "developmental delay" will not escape my lips.

I will remember the parent I used to be and start enjoying the journey again.

And when I lapse, as I am sure to do, I need to hug my son and tell him that I love being his mom.

Because really, that's all I should concern myself with: being the best parent to Sam and Charlie that I can be.

And there's no DSM V definition for that.

Day 25: On sour moods

I am cranky today.

For real cranky.

The kind of cranky that makes it really hard for me to say anything positive.

I hate when I get this way, and thankfully it doesn't happen often, but I think my brain has just had "enough" this week.

The heat. The lack of sleep.  The stress.

And most importantly: I haven't had any time to myself.

And I mean that literally.  There were three days this week where I literally had so little time to myself that I couldn't even shower or eat a full meal.

I need to step away, in a big way.

It started this morning and just got worse throughout the day. I don't want to talk to anyone. I don't want to read Facebook updates or look at pictures. I don't want to watch tv or even read a book.

Yes, even fictional characters are too much for me to handle visiting with tonight.

I don't even want to blog. I just don't.  I am doing it out of sheer obligation, but I have nothing to say worth saying.

This is what they call "burn out".

And I need to find a way to recharge.

So, tomorrow I am going through my schedule and systematically identifying the days that I have overbooked. And then I am purging my appointments and taking back a little of my much needed introversion.

I may actually cancel everything except family and kiddo obligations actually.

The thought of that makes me smile.

It actually makes me a little giddy.

This might be the first genuinely sincere smile I have had since 7 am.

Screw this day. I'm going to bed.

Day 24: On leaps and bounds

I haven't really posted much about Sam's school, frankly because I didn't want to jinx it, but I have to finally say: ELVES IS AMAZING!

Now, I don't know if it's the teachers (who are remarkable), the environment (which is perfect) or just that Sammie was "ready" for these leaps, but he has already been transformed and we have only done week 1.

Here are just some of the massive improvements we have seen this week:

-Sammie is actively seeking out opportunities to play with others, including other kids.

-His social reaction have dramatically improved including sustained eye contact during play, responding to being called, patiently waiting when asked to do so, following through with instructions...

-His tendency towards obsession has almost completely disolved (seriously, he walked passed his trains in a state of disarray and chose to leave them to go play outside) and he no longer requires comfort objects to transition from different spaces.

-He is learning to share and respect the physical boundaries of other kids (including his sister, which is a huge win)

-He is choosing to eat on his own, including working on using utensils. He is following through on art projects and requesting to do them at his home craft center.

-He is regulating his emotions much more effectively, and hasn't had a meltdown all week.

-He has accepted sitting on the toilet every time we change his diaper. (Another huge win).

-He is sleeping more solidly and for longer periods.

-He has begun using occasional signs ("more" and the beginning of "help"- which we have been working on for months now) and is noticeably more intentional with his verbalizations.

Now, as expected, with these leaps come some minor regressions, particularly in terms of his sensory seeking behaviours, but all in all the changes have been remarkable not only in their intensity but in the speed at which he is developing.

Even his teachers are blown away, saying that he is practically a different child than he was when he first arrived Monday.

I personally would not go that far- Sam has always been capable of extraordinary behaviours , often meeting and surpassing his peers. Instead, what I would say is that his baseline has moved up to where his "best" days now seem to be his new normal.

I know there will be tough spots still to come; as he moves forward with new skills, regressions will arise and we are going to see occasional sensitive/disregulated days. But I haven't felt this optimistic about his progress in months, and knowing that his teachers see his full potential fills my heart with joy.

I can't wait to see what else lies ahead for us as Sam continues to steam roll his way through new goals.

Go Sammie Go!!!

Also, Charlie won't stop talking. Ever. It's adorable and strange to have babble conversations with my baby. Gotta admit that I love that an awful lot

Chatty Charlie and Silent Sam.

My heart is full.

Here's some Charlie eye candy for y'all to melt over. :)

DAY 23: On Staring

It's ok if you stare.

Truly, it is.

I'm not being fascetious or defensive or sarcastic.

I will say it again, even more clearly:

It is ok with me if you stare at my son and I because you noticed he is different.

We are trained from birth to recognize the abnormalities in life. As young children, we could all hum along to "One of these things is not like the other", and took great pleasure in solving the puzzle. As we grow, we are encouraged to be unique, yes, but only in ways that are socially acceptable. We are told to stand out, to be leaders- but we also witness first hand how difficult the lives of non-conformists can be.

Trust me, I know that different "sticks out".  And staring is a normal reaction.

Honestly, I actually wonder if it isn't preferable to pretending not to see, scuttling off as if we are somehow like the insects on the ground, too unpleasant to acknowledge.

So yes, you can look at us. You can watch us. You can notice that we are different.

But if you really want to make my day, you'll take it one step further.

Ask the question.

It's on your mind. On the tip of your tongue. Just ask it already...

Is your son "ok"?

(Which, in reality, is the older, more mature version of "What's wrong with your kid")

Or, if you are feeling especially brave, "Does your son have special needs?"

Ask the question- and give me a chance to respond- cause I have a boatload of awesome, informed, education-focused answers.  I can practically quote verbatim half a dozen sources explain neuro-diversity. I am a walking FAQ on Autism Spectrum Disorder and a host of other PDD, Sensory and Behavioural conditions.

Please, let me share this with you.

You see, three years ago, I was just like you.  My knowledge of Autism was what I picked up watching Rainman or Oprah. I was scared of this condition that I heard you could get from a vaccine. I was terrified of having children who didn't love me, who were cold, unfeeling, disconnected.

I had a genuine phobia of Autism.

And I knew nothing about it.

I remember seeing it once- about 10 years ago...or at least I *think* I saw it.

And boy, did I ever stare.

I wish I had the courage back then to ask- not assume, but sincerely ask- to have it explained to me. I wish I had been able to say "Can you tell me about his disability? I really want to learn and understand.  Where can I learn more?"

But instead, I stared.

It may have been "awful" of me, I know. But not all stares are full of judgment. Some stares are inquisitive, desperate to understand.

And what I saw while I stared stuck with me for the past ten years...

A mother, adoringly stroking the hair of her grown son, whispering soft and reassuring things into his ears.

A son, whose body had betrayed him, clasping her hand in his, desperately trying to regain control.

A voice, wordless, but full of intention and meaning.

A human connection.

And, just like that, a flicker of light struck me in my darkest soul...there was love here. Real, reciprocal love.

And on a very basic level, I began to understand a fundamental truth: Whatever I "thought" I knew about Autism was wrong.

Of course, I couldn't have known then that I would one day stand in that mother's shoes.

But I do remember standing in yours.

And only through sharing knowledge and education can we begin to address the massive social misunderstandings that surround this condition.

So please, if you can be brave, ask me the question. I promise you, I will answer with as much honesty and information as I can.

But, if that's too much for me to ask of you, then please just look at me in the eyes.

Please stare.

If you don't look, then you can pretend we aren't there.

But we are.

So look.

And if you do look- with an open heart and an open mind- you will see a love story of a mom and her son, just trying to put the pieces of the puzzle together.

You will see affection.

You will see connection.

You will see love.

You will see the true face of autism.

Day 22: On the bus...(Wordless Wednesday)

Day 3 of school. A glowing report from school. And Sam's first bus ride. ♥

(Sadly, I was too busy working out with Sam to take pictures of him at his first day of Karate lessons, but it was super fun and I know that he will start to catch on soon.)

Day 21: On Lists (and Sam's first few days of school)

I like lists. So here's a fun one :)

5 things I learned on Sam's First 2 Days of School

1) It doesn't matter how well prepared you are and how much time you give yourself, you are going to be late for drop off/pick up or both.

2) You should always pour yourself a stiff drink before opening the "communication book".

3) No matter how many 'cool' things you buy your kid for school, they will inevitably covet the other kid's backpack.

4) The extra change of clothes isn't a precaution; it's a necessity.  (Yup, epic poo-apocalypse on day 1. Go Sam. My kid will forever be known as "that kid that poo'd"... :p)

5) I am totally going to be "that mom". Oops.

Seriously though, Sam's first two days of school were good. Some minor meltdowns, a couple of tears and some expected transition issues (we don't like to 'share' with other kids), but we are already starting to see some subtle changes and growth (like using the "more" sign).

The staff is awesome and they are buying a trampoline just for my kid. My anxiety has been almost completely alleviated and, even though I miss him like mad, I know in my heart that this is going to be awesome.

Now, step two of my plan: teach Charlie to sleep while Sam's in school so I can FINALLY DO ALL THE CLEANING!!!

Day 20: On denouement...

Today was one for the books, that's for sure.

Honestly, I just don't have the emotional strength to tell the story yet. I haven't even uploaded my pictures from the camera.

I understand the meaning of the word "denouement" even more today than I ever have before. The climax is over, but our story hasn't quite ended yet. There is still the aftermath, where the characters unwind from the action and slowly settle back into their "new normal".

This has been my evening.  I don't think I can consider this story fully over until I close my eyes and fall asleep, amd let it slowly lift from my body into the atmosphere.

Until then, I will relish the quiet and stillness that comes at the end of a great battle won. I will let my hand linger, intertwined with my son's as he softly slumbers, and think back on all the times I held him to sleep. I will reflect and dream of what the future will hold for my young daughter, and look forward to the hours of "us" time that we will now have together. I will let my body collapse into the arms of my amazing husband, and I will weep into his shoulders tears of joy, pain, heartache, and love.

And when this is over, there will be closure.

Roll credits.

That is, until we do it all over again in the morning... ;)

100th Post! On Anxiety Follow Up Post: On Taking Control

No they aren't.
They are not going to take my son.

That's just not how this is going to go.

Parents dream about what their child's first day of school will look like. They plan out the clothes, carefully label the supplies. It's a bittersweet moment in our lives. A rite of passage.

This is a milestone, not only for him, but for Jason and I.

And I will not be robbed of it.

So I made some calls.

And I made some changes.

And I took control.

So instead, of loading him on a bus right off the bat, Jason and I will drive him. We will walk him right up to his class room. We will hold his hand and see his face as he takes in his new surroundings. Will will hug him and tell him that he is safe, secure and comfortable. We will hold him and show him that he is loved and that we know he is ready for this new step. We will reaffirm to him that we are ALWAYS there, his two pillars of strength, never fully out of reach.

And then, when he is ready, we will walk away and trust that we have truly done everything we can to make this step a joyful and exciting one.

And when he is done, we will be there- in person- ready to take him back home again.

This will not be the worst day of our lives. I will not allow that. It will be a celebration of the next step in our family's journey.

Why?

Because I said so, dammit.

Day 19: On anxiety

I can't type today.

My fingers are trembling and the words are locked inside my brain, screaming to get out.

They are all caught up in a lump in my throat.

They flutter around like Monarchs in my stomach.

And I just can't catch my breath.

All day today, I've been breathless- deflated and wrinkled like an old abandoned balloon, shriveled from the memory of the inflations of the past.

The are going to take my baby.

They are going to take my son.

The child I carried in my womb for seven months. The one I for whom I was prepared to die so that he might live.

The precious baby that I grew at my breast, and swore on my life I would protect.

They are going to take him.

They will put him on a big orange bus,one that he's only ever seen in cartoons and pictures.

They are going to strap him down, ignoring his protestations, and drive away with him.

And when he cries, there will be no familiar faces to console him. No recognizable voices. None of the comforts that he has clung to his entire life.

He will not be able to ask for help. He will not be able say that he is scared. He will not be able to say if he is hurt.

Never before has his wordlessness been so tangible. So real. So terrifying.

"This is what we do", They tell me. This is their profession. They will take good care of him. They will see the words in his eyes, hear the voice of his body, listen to the whispers of his soul.

But They don't know him.  And he doesn't know Them. They are strangers to him.

And he will be terrified.

He will not understand why it must be so; that this is the first brave step into a whole new world of growth.

He will be confused. He will be angry. He will be hurt.

And I won't be there.

Even though I promised him I always would be.

I hope to God he will forgive me.

I hope to God I can forgive myself.

Day 18: On today (A Love Letter To My Son)

Some days, you wake up without even looking at me and walk past me as if I were some ghost in the room.

Some days, I kneel down to see what you are playing with and you carefully turn your entire body around so as not to look at me.

Some days, no matter how often or how loudly I call out your name, my voice is carried off into the wind as if you never heard a word.

Some days, the silence has a life of its own and I am overwhelmed by the aloneness of it all.

Some days, I just don't know if you know the difference between me and the stranger on the street.

But not today

Today, you sat on my lap to show me the latest toy to capture your attention.

Today, you ran to my arms, seeking in me comfort after scraping your knee.

Today, you took my hand and asked me to follow you as you moved from room to room, exploring your space.

Today, you sat up on my lap during lunch, not wanting to be further than an arm's reach away, even for a moment.

Today, you folded your body into mine and let me hold you, my lips resting on your forehead, tickling you as they whispered that I love you.

Today, you showed me just how deeply connected you truly are, to me and to the world.

Some days, our worlds are galaxies apart.

But today, you reached through the distance, took my hand and for a day our worlds were one.

As today reaches its end, I know in my heart that the "some days" are growing fewer and fewer. There are more days like today on the horizon.

Today, we lay one more stone on the bridge between us, as one more piece of the puzzle falls into place.

Today was amazing.

Day 17: On Perspective

It is said that most families are only three pay packets away from homelessness. This seems surreal to many of us who see ourselves as so far removed from the reality of true poverty. But when you sit down and crunch the numbers, the truth can often be terrifying. This serves as an important reminder to us all not only to be prepared for emergencies, but also of just how fine the lines are between all of us human beings. While we fool ourselves into believing that we live in very different worlds, the truth is that life's unpredictability can connect us all in ways that we can never foresee.

Before I had kids, I remember seeing families with special needs and thinking that I simply couldn't imagine what that life must be like. I waxed philosophical, pondering issues of quality of life, of what kind of "supports" were really needed, on what role society should play in helping families that were faced with these incredible difficulties. As a social progressive, I have always understood that I have a shared responsibility in helping those who can't always help themselves. I just didn't quite understand what that meant.

Now, of course, I find myself in the shoes of those that I so often reflected upon.  As many of my friends will tell you, I always had a bit of a premonition that I would be given a child with exceptionalities. While I didn't know what it meant, I truly believed that my life had been an exercise in preparing for the children that I might one day have. Of course, you can never truly understand a situation until you are living it. Heck, sometimes I'm not sure I entirely understand the situation I am currently in. ;)

I work really hard at keeping things in perspective. I have been blessed in extraordinary ways and my life is a fantastic place to be. I have no regrets and there is nothing I would "change".  But I have my moments, like everyone else, of getting lost in the "why me" of it all. Usually, this happens over the dumbest of things. I actually think that I subconsciously choose the dumbest of things simply because when a real crisis hits, there simply is no room (or time) for self-pity. You go into action mode. You have no choice. This is our basic human fight or flight instinct.

But, on days where I just can't get Sammie to engage with me, no matter how hard I try, I find myself whining. And I lose perspective.

It happens to us all.

But life has a way of jarring us back into reality. Sometimes, this is direct ways that impact your life immensely. But more often than not, it happens in indirect ways where you witness- and vicariously live- a trauma that reminds you of just how good you have it.

Yesterday was one of those days.

Yesterday, my world and the world of the only Autism Community was shaken to its very foundation. I wrote a post recounting the story. You can find that post here.

It is a story of a mother who attempted the murder/suicide of her highly aggressive, autistic daughter. It is a story of a tragedy so deep that I am not sure I will ever be the same because of it. It is a story where you sit there and shake your head, thinking to yourself "I could never do what she did. I could never hurt my child. I could never hurt myself. I could never feel that desperate. That could never happen to me...."

Except that that it could.

And that's the terrifying part.

The way I see it, like we are only a few cheques removed from homelessness, most of us in the Special Needs Community are only a few steps away from rock bottom. We have life preservers, we have supports, we have plans. But if these all disappeared from under us, how close would we really be to desperation.

And desperation can cause us to do things that we could never conceive of doing.

Desperation can make you go mad.

I am very likely one of the most well supported special needs parents I know. My kids have absolutely everything going for them, and our future looks exceptionally bright. But what if these pillars of stability were to suddenly disappear. Then what?

We have family and friends in abundance. They are there to lend us a hand, be it by dropping off meals, providing us with childcare, giving us the much needed friendship and companionship that we crave in our long and silent days, understanding, listening and sharing in our struggles and in our successes.

At any given time, day or night, we have at least 15 families that we can call on in an emergency. My "village" is amazing.

Beyond that, we are blessed to be surrounded by some incredibly intelligent and capable friends, many of whom actually work in childcare, education, special needs, early intervention, etc. My immediate circle of friends includes two teachers who specialize in special needs education, a social worker who is studying to be a psychologist, a nurse who specializes in newborns and breastfeeding, several parenting/breastfeeding advocates, a holistic and naturopathic practitioner, other moms who have been navigating special needs parenting and know much more than I do, and the list goes on....And of course, there's my mom who is surrounded by the real "experts" in the field of early child intervention and exposed to the most cutting edge treatments, approaches and therapies. When I have a question, there are half a dozen people I can turn to for advice. I do not have to wait in a queue to talk to a case worker. I have them at my disposal, and they are all eager to help with whatever they can.

I also have a huge network of social media allies. Advocates, friends, parents who are all battling the same fights and living very similar realities. In them, I find kinship, support, and an army that I know is fighting as hard for Sammie as I am for their kids.

This is not everyone's reality.

My husband works a job that allows for a quality of life that is high enough that I do not have an extraordinary pressure to work myself. While I do work when I am not on maternity leave (a "luxury" in and of itself), I am able to do most of this from home and money is very rarely a serious concern. If we need a learning tool for Sammie, we buy it. If he needs a sensory space, we build it.

This is not everyone's reality.

Moreover, Jason's job has been extremely flexible and understanding about family's unique situation. He has been able to attend early intervention sessions, has never missed a doctor's appointment, has been able to come home on particularly bad days when I just didn't feel like I could handle things alone.  His boss asks about me regularly and reconfirms that he understands, empathizes and is committed to being as supportive of our family as we can. His career is stable. We are well care for, and need for nothing.

This is not everyone's reality.

I live in Alberta, a province recognized across North America as being one of the leaders in early childhood intervention and special needs integration. Sammie will be attending school 15 hours a week starting on Monday, a service paid for entirely by the Ministry of Education. There, he will work with specialists that would cost hundreds of dollars a week to hire out privately. He will be bussed, at no additional cost or inconvenience to me.  Schools have an obligation to accommodate special needs children up to the point of extreme hardship, at which point other systems fall into place to ensure that every child has access to a full and rounded education. We have access to Family Supports for Children with Disabilities that helps carry many of the extraneous costs associated with parenting a special needs child. We have Specialized Services, an innovative multi-disciplinary approach to supplementary therapies and supports for children with severe disabilities. And we have countless different organizations and agencies offering services, programming, counselling, family supports, playgroups, etc. Once Sammie hits full time school, the system continues with its supports until he reaches the age of 18, at which point he is transitioned into adult support systems.

This is not everyone's reality.

I also live in Canada, a country that has made an ongoing commitment to accessible, universal health care (to say it is "free" is a serious misnomer, but that's another post entirely). Our country has also found ways to help alleviate the financial load of special needs parenting. We have tax credits worth thousands of dollars a year, and a Registered Disability Savings Plan, which is supplemented by the Canada Disability Savings Grants and Bonds, up to a lifetime maximum of $70,000. Our medical expenses that are not covered by our provincial health care plan are tax deductible. This includes any learning or development devices that can benefit Sammie's education. When navigated properly, the 'system' provides many- if not most- of the financial support you need to navigate the financial hardship that can accompany special needs parenting.

Are the Government interventions in an easy system to navigate? No. I get "lost" in it on an almost daily basis. 

Is it a perfect system? Not even close. There is a tremendous amount of work needed, and so many people who fall through the cracks on a daily basis that it literally makes me sick to think about it. (This is especially true for our adults living with special needs, who are too often forgotten because their parents lose the ability to advocate full time on their behalf.)

Does it cover everything? Ha ha. Not by a long shot.

But it is a lot better than nothing, and it is our to benefit from what is available, and to continue to advocate for improvements every day. 

This is not everyone's reality.

The truth of the matter is that, in perspective, we have it really good. But there are many parents who are living realities that are very different from my own. They are without the family and friend network to provide help, solace, and support. They are without the understanding boss and the stable, flexible job. They are without a government that pays for many of the treatments required, and subsidizes almost everything that isn't paid for. They are without a government that is committed to seeing every child succeed to the best of their ability.

Involved Family/Friends. 
Stable Finances. 
Government Intervention. 

They are three pillars of support removed from me.

Or, put in a colder, harsher light, I am three pillars of support away from rock bottom.

Remove even one of these pillars, and my foundation begins to crumble. Remove two, and I am teetering on the brink. Remove all three, and my life falls apart.

Crash.

Bam.

Boom.

Rock bottom.

And then what?

I don't know. It seems to far removed from me that I just can't imagine what that reality must look like.

But truly, we are all only a few steps away from the life that we fear the most.

I don't believe I will ever find the words to truly speak on the horrors of Kelli and Issy's story.  I can not tell you if what she did was justified. I can't tell you that she is evil. I can't tell you that she is a victim, or that someone else is to blame. I simply don't have the capacity to fully wrap my head around any of it long enough to form an opinion.

All I know is that it was, without a doubt, an act of sheer and utter desperation. It was the act of a woman so broken down that she genuinely didn't see any other choice. And while I can never imagine myself taking the actions that she did, it definitely makes me reflect on just how lucky I am and how close I could be to living in her shoes.

Desperation. It can make you go mad.

And that is all the perspective I need.

Day 16: On feeding the soul

Today, I'm doing another freebie. You see, a lot happened today that is still sitting heavy on my soul. And I have a lot to say about it. But not tonight. 

Tonight, I fed my wounded soul with the best remedy there is: time spent with good "old" friends.

There were a lot of laughs.  And a lot reminiscing. And a lot of catching up.

And it was good.

My soul needed that tonight. And a good night sleep.

Battles can wait for another day.

Mama Zita

On Tragedy

*I do not consider this post to be a part of the summer blog challenge. I will write a response post of my own for that. This post is intended to share a story, a tragedy, and to give perspective to those who work with special needs and the friends, the family, the siblings, the parents who love them. 

I do not know if there has ever been a more heartbreaking story of the world failing a parent, and a parent failing her child. It is a story of hopelessness and of tragic desperation. It cuts to the core of who we are and what we believe in as a society. It is difficult to read, but it might be the most important story I ever share on this blog. 

I know that reading blog posts is time consuming. I know that this is especially true when there are a bunch of links to read first. But I am asking you- no, I am begging you- if you are close to our family, please take the time to read each and every link that I am about to share.  

From: The Status Woe, written September 3, 2013:

Our story opens with a mother who was on the brink of losing everything- everything- because the system failed her. Her safety, and the safety of her children, was on the line. Her options had been exhausted. She had been fighting for years. This is her final cry for help. 

http://thestatuswoe.wordpress.com/2013/09/03/when-a-power-player-takes-you-down/

From: The Traverse City Record Eagle (Online Newspaper), written September 4th, 2013

The unspeakable happens. 

http://record-eagle.com/local/x312422563/Charges-loom-for-Benzie-woman-in-murder-suicide-attempt

From: Mostly True Stuff, written September 4th, 2013

Lexi puts into words how most of us- followers and friends and partners in this sometimes dark journey of special needs parenting- are feeling. 

Kelli is one of our own. A woman I have "known" through her advocacy. This is a woman who loves her children. She has championed them. She has fought for years, for them and for all our children

http://www.mostlytruestuff.com/2013/09/4416.html?fb_source=pubv1

I have no words for the sadness and pain and anger and fear that I am feeling.  I am in shock. I am terrified. And I am all too aware of her struggle. Never before has a stranger's story hit closer to home.

Day 15: On sexuality and my daughter

Dearest baby girl,

As I write this letter, you are only 6 months old. You are only beginning to see the beauty in the world, only beginning to learn of love, only beginning to discover where you fit into it all.

You find your hands fascinating. You find your feet hilarious. You smile at yourself in the mirror because you love the face you see.

It is an amazing face. Everyone agrees. When it comes to beautiful babies, you embody it all. I have no doubt that you will also grow to be a beautiful toddler, preschooler, tween and teen.

And as you grow older, you will come to better understand this mysterious, complicated amalgamation of cells we call the 'human body'. It will frustrate you. It will fascinate you. It will frighten you. It will free you, and empower you.

And, in far too many ways, you will think that it defines you.

Far too soon, you will become inundated with a world intent on dominating your mystical body. They will barrage you with clothes, make up, hair styles, and other products, each one making wilder promises than the last.  You will be told that if you look a certain way, talk a certain way, act a certain way, you will achieve that one true dream that all women secretly have: To be desired.

But, my darling girl, this is a scam. It isn't real. They aren't selling beauty. They are selling you a belief system that underlines that you, your body, and your self worth can be packaged up and marketed. And then they are turning around and selling a piece of you, of your spirit, to the world.

And, wily as they are, they will use every trick in the book to do it. They will tell you that "sex sells" and that you should put yourself up for the highest bidder.

And then, they will shame you for believing them and act as if, somehow, you are responsible for all the ills of the world. They will confuse you. They will confound you. They will betray you.

If you let them, they will break you.
And I am powerless to stop it.

Try as I might, I can not shield you from a world that is often terrifying and cruel because to do so would be to deprive you of a world that can also be wondrous and astounding.

But, what I can do is give you the tools you need to take on this world and make it everything you want it to be.

My daughter, I will equip you with the truth: You are not a Madonna and you are not a Whore. You are not a prude and you are not a slut. You are a girl, a woman in the making, and you will be filled with dreams and desires.

And yes, you are human. And, for the most part, we all share on basic commonality: We are sexual beings.

I will never shame you for your sexuality. It is a part of who you are, in many ways the most dominant part. Sex is a beautiful and empowering expression of self that I hope you grow to enjoy and embrace.

I will not shame, and I will not judge. But I will remind you that, like all things in life, sexuality can be complex and the consequences of our actions are very real. I will make sure that you understand these consequences so that you can make educated decisions that align with your personal values and beliefs.

Along the way, you will falter. You will make decisions with your body and your heart that you regret.  And when you do, I hope you turn to me so that I can help you confront them, move beyond them and expunge these ghosts from your past.

Fear not, my love. I made mistakes too. I gave my heart and my body in ways that I didn't understand or consider.

But these mistakes became a part of my history, of my sexual soul, and helped me to come to a place in my life where I am deeply comfortable with my body, my partner, and myself.

I hope, my daughter, that you learn to love your body of the future as much as you love your body of today.

And if I have anything to say about it, you will.

Mama Zita

Day 14: On setting a tone

Yeah, so I'm sure it will surprise no one to know that I am "that" mom. You know the kind who reads ALL THE BOOKS, and LOGS ALL THE THINGS, and generally overwhelms and inundates caregivers with every last tidbit of information they need to know before I hand over the caring of my child.

To date,  Sam has been left with only five people in the world without Jason or I present: my mom, my brother, my best friend C, my best friend E, and my dear friend S (who ran an awesome dayhome that we used for drop in occasionally). In the same vein, Charlie has never been without her father or I for more than an hour since the day she was born.

When it comes to Charlie, the reason is simple: she's a breastfeeding baby who refuses to take a bottle. But with Sam, the situation is made complicated by his inability to communicate in easily accessible ways. Therefore, all his caregivers have to be people that I trust completely and who have a functional understanding of "Sammie Speak". And even with these loving, engaged friends, leaving him alone has always come with a serious amount of trepidation. After all, when your child can't even tell you if he is hungry, there is a much higher risk at hand.

So, understandably, the idea of sending him to school every week is morbidly terrifying. I know that it will be amazing for him, but the fear is there nonetheless.

So, being the control freak that I am, I felt I needed to set a tone for how I want Samuel's care to go. This was not so much in terms of what to do, but rather in how Jason and I have chosen to parent him. I wanted to give his teacher a bit of an inside look at who we are and what we believe in.

Ever the strategist, I know that these things are usually best conveyed in writing. Together, Jason and I drafted a document outlining the values and beliefs that frame our family vision.

The document (which was incredibly short by my standards: only 3 pages long), outlined a history and our in-home strategies in more depth (including nutrition, sensory diet, pivotal response goals and outcomes), etc. But it is the first page that I am the most proud of. This is where Jason and I really dug deep to identify our cores values which frame our parenting worldview.  Tonight, I thought I would share these with you.

:) Mama Zita

Dube-Lockhart Family Mission Statement
Our family mission is to provide to every member of our family the love, comfort, support, and opportunities they need to learn, grow, and flourish to their fullest potential and live happy and enriched lives.

We respect the individuality and personal needs of every member of our household, while always embracing their uniqueness and valuing their authenticity.

We strive to treat ourselves, each other, and the world with kindness, compassion, understanding, and a healthy sense of humour.  

We believe that knowledge is power, that laughter is the best medicine, and that the only “special need” we have is to be loved and accepted for who we are.  

We are a happy family, and every day is a new adventure.

Jason and Zita’s Parental Commitment:  

We believe that children are born as human beings, each one having personal feelings, opinions, and points of view worthy of our respect and understanding.
We will not treat our children with any less respect, accommodation, consideration and kindness than we would treat each other, or any other human being.

We believe in teaching self-discipline through establishing developmentally appropriate expectations and by inspiring the desire to meet and exceed these milestones.

We will not use violence, shame, or coercion to punish.

We teach with love and compassion.

We will see both our children as individuals, equal but not the same, and each requiring a unique parenting approach personalized to their needs.

We will not compare their achievements, abilities, or challenges with each other.  

We will do everything in our power to give to them the opportunities and accommodations that they need to live rich and happy lives.

We will never give up on them, and will never undermine their abilities.

We will celebrate every milestone, no matter how small.

We will never lose hope, and will focus on the positive.

We will love our children and each other unconditionally.

Our Vision for Samuel

We believe that if we are committed to learning Samuel’s language, he will learn to speak ours.

We believe that if we are committed to entering into Samuel’s world, he will learn to enter ours.

We believe that if we share in Samuel’s interests, he will learn to share in ours.

We will never underestimate our son’s potential.

Day 13: On battles on the homefront

This one is going to be short.  Honestly, I have too much on my plate today to write a long, engaging post. So instead, a short mini vent.

A lot of Sam's specialized programing happens in the home.  For the past year, every two weeks we had a visit from our Early Intervention counsellor, Bev. Now, as we prepare for school, we also prepare for the barrage of additional people coming into our home to "help".

Don't get me wrong. These programs are great, and helpful, and I am sure that many parents love that there are house calls. But this introvert isn't one of them.

I *hate* having strangers in my home.  Even then, hate may not be a strong enough word. I loathe it, with every fibre of my being. It makes me want to wretch just thinking of it.

The sheer amount of stress that goes into one of these visits in insane. It is hugely invasive, disrupts not only my schedule but Sam and Charlie's as well and makes me feel an obligation to play hostess while simultaneously having every aspect of my home and parenting examined under a microscopic lense.

To call it invasive is putting it mildly. It borders on investigatory. And it gives me the shakes.

So tonight, I am on my third anxiety attack. Jason spent the whole day cleaning. We are both exhausted, and hardly even got any time to play with Sam what with preparing for the home visit. (That, my friends, is irony.)

So all you people bitching about the government spying on your facebook activity, give a thought to those of us who are innundated by the "system" on a near continual basis. From here on in, I will need to justify every parenting decision I make to a "team" of specialists who all pretend that I am "in charge".

But let's not kid ourselves. They are the keepers of the services. So if I want them, I'd better be prepared to play ball and conform or my child will go without.

As far as options go, these choices suck.

Mama Zita

*Edited to add:

Please do not mistake my whining for the belief that these services are not a) amazing, b) necessary for Sam (and everyone in the family), c) generally pleasant and filled with wonderful people who work their buns off to help make our lives better. I am grateful for the opportunities we are given.  Just frustrated by my own social anxieties amd obsessive compulsive behaviors that make these meetings challenging for me.

Day 12: On reason, seasons and lifetimes

Last night, my fellow Summer Blog Challenge participant and a woman that I admire a great deal despite my few interactions with her, posted an exceedingly insightful and sad post about friendships ending. (You can read it here: )

Since read it last night, I haven't been able to shake it from my spirit. You see, over the past year, I too have lived the same experience of watching a few friendships absent themselves into oblivion. Most of these had no "cause" per say. Our journeys just reached forks in the road that took us in vastly different, even oppositional, directions.

Simultaneously, I have seen myself drawn closer into relationships with women that I would never have predicted would mesh with me.

They say for every door that closes, a window opens...

This has made me really reflect on the nature of friendship. Why and how do we come to choose the people we give our hearts to? Why and how do these relationshios evolve, either in drawing closer or being pushed apart? How do we know when to "let go" and when to fight to hold on? And what of those people that you see only infrequently, but who nonetheless command a loyalty and love so deep that time and distance can not divide them?

I admit, I have been disproportionately blessed with wonderful friends in my life. Most of my close friends have journeyed with me for a decade or more. They have laughed with me, cried with me, grieved with me, and grown with me. They are parts of my heart and of my soul.

But, like everyone I am sure, I have had my share of transient friends, moving like nomads in and out of my life. Some leave forever, some drift back and forth before fading away entirely.

Each has brought sadness, but less than I would have originally predicted. What I have learned is that friendship is not a stable concept. Each relationship in our life is in a constant state of flux. We grow and change, and hope that those we love will grow and change in ways that continue to complement us.

And when they don't?

Well, just because a door is closed doesn't mean it is locked forever. Characters in the story of our lives appear and disappear so as to help us move forward in our own personal plot. This is critical to our development as human beings. As painful as it may be, it is important.

I was once told a quote- by whom, I wish I could recall- that sums this up perfectly.

In our lives, there are three types of people. Those who are there for a reason. Those who are there for a season.  And those who are there for a lifetime.

Each type is equally valuable- but recognizing the difference saves us from a great deal of heart ache.

I am grateful for all the people who have shared my journey. And for those who have fallen distant along the years, tonight I raise my glass to you, for it was you who helped make me the person that I am. I hope you cup also overflows with 'lifetime' friends.

Good night!
Mama Zita