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 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 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 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 8: Supplementary post: On relating, part 2.

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

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

Dear friends with "normal kids":

Some days are hard.

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

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

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

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

And sometimes different sucks.

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

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

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

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

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

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

They aren't.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you.

Mama Zita

Day 7: On technology failing

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

TOP 5 HIGHLIGHTS OF MY DAY

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

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

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

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

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

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

Real post tomorrow, I promise.

Good night!
Mama Zita

Day 6: On fear

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

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

It was only seven words.

Seven words that changed the world.

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

My mother.

An accident.

A car wrecked.

My God.

There are no words...

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

"Dad is dead."

Three words that changed the world.

The sound of them was deafening.

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

My father.

Dead.

My God.

There are no words.

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

Fear.

It has a taste.

It has a smell.

It has a life of its own.

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

I almost lost my mother last night.

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

Day 3: On Giving

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

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

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

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

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

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

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

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

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

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

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

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

"All I want is you."

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

The Gift of the Magi

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

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

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

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

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

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

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

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

Mama Zita

Day 2: On nostalgia

It's Throwback Thursday, so I thought I would share one of my favourite pictures of Sammie.

While I was uploading it, I noticed that it was taken the week of his 6 month birthday.

Seeing as we just celebrated Charlize's 6 month birthday this week, I thought I'd recreate the moment.

Here are my two kiddos, each enjoying a bubble bath. They may look a lot alike, bit these two kiddos are night and day different.

And I wouldn't have it any other way.  :)

Enjoy!

Mama Zita

Day 1: On not looking a gift horse in the mouth

I had a great post lined up for tonight. I spent all day thinking about it and writing it in my head. Sadly, a more pressing post must be written.

You see, last night was the first night in over two weeks that Sam slept through the night.  Now, unlike most kids, Sam's version of night waking doesn't involve a few pats on the back and then falling back asleep. 

No, when Sam wakes up, he does it style.  Usually each waking period lasts from 3 to six hours, thus resulting in less than a total of five hours of sleep in the whole night.  When he wakes, he needs to work it out by jumping on his trampoline and playing for a few hours before settling back down.

So, between him and my six month old teething baby, I've been running on so little sleep that I am refusing to drive because I do not believe I have all my faculties present to do so.

But tonight, he has napped well and will hopefully sleep easily.  Charlie has just gone down and I have a chance to catch a few precious hours before the potential for a five am playtime rears its ugly head.

As much as I'd like to write something interesting and involved, I have learned that I can't afford to pass these hours up for any reason. So I am going to bed, my interesting post still safely drafted in my head for another night.  Tonight, all I care about is getting some rest.

You take what you can get, and appreciate what you've been given.  This horse is a welcome gift, and I'm going to ride it right into La-La Land.

Good night, folks!

Mama Zita

Summer Blog Challenge: Take 3

Well, it's here again. The summer blog challenge starts tomorrow. From August 21st until September 21st (the last day of summer, and presumably the first day of "Alberta Winter"), I will be posting a daily blog post. This may seem funny from someone who has not updated her blog since April, but I've done it two years prior now, so I guess that makes it a tradition.

This year, I suspect may be a touch different than years past. I will probably focus significantly more time writing about our lives now, a topic which has changed dramatically in the last twelve months. With the addition of a second baby, being back on mat leave, navigating the scary and complex world of special needa parenting, getting ready for Sammie to start school, I suspect there will be much to talk about.

I am committed to posting daily.  That is all.  No word limits, no special topics, no guidelines or rules. Some days, you may get an essay. Other days might only bring a picture or a quote. But I will post. Probably from bed, while I nurse my baby and try to ignore my three year old jumping on the bed

Follow along if you'd like.  I promise to make your life seem a lot more normal. ;)

Momma Zita