The Little Things

Sometimes Giancarlo reaches for my hand and intertwines his fingers around mine, like a boyfriend would do, and I think to myself, “will he ever hold another person’s hand this way in the future? will he ever date?” but then I bring myself back to the present moment and try to be grateful for his affectionate gesture, and I am. I am grateful for all the little things.

Every time I refuse one of his demands, and instead of going apeshit, he reformulates it into a more complete and polite request, I am reminded of a time when we wondered if his severe speech delay would ever improve enough to make him understood by anyone other than me, and I am grateful.

Every time he dips his finger into a new food and licks it, regardless of the reaction that follows, I am reminded of how, for the past 9 years, his diet has been so rigidly restrictive, and I am grateful.

Every time he leans in and kisses his sister’s forehead or takes her hand and places around his round belly, I am reminded of all the other children I know on the spectrum who refuse to be touched – whose parents ache for hugs and kisses, and I am grateful.

Every time he drops something by accident, and I notice him pick it up without being prompted, as he mutters “aw sheet” under his breath, I realize how aware he has become of his surroundings and I am so, so grateful.

I am grateful for these little things, because a few years ago, when he was diagnosed, I literally never allowed myself to imagine him doing those things because I was too afraid of the very real possibility that it would never be. My husband was the optimistic one, but although I never gave up on my son, I was hanging on too thin of a thread to be able to handle the crashing down of false hopes. So instead I have focused on pushing him just outside his comfort level, without an end goal in mind. My only objective has been constant progress – and boy, has there been!

So, if I complain about how hard some days are, or when my depression clouds my perception, it is not for a lack of gratitude. I am grateful every day for every little thing, and I always, always will be.

Why I support the blue puzzle piece

Photo by Ann H on Pexels

Before my son’s diagnosis 5 years ago, I don’t think I knew about the blue puzzle piece symbol. I can’t say for certain, though, because it feels like a lifetime ago. What I do remember, however, is that it was an extremely isolating time and I felt so alienated from my friends and family who had no idea what I was going through. The first time I felt seen and PART OF something again was when my family and I attended our first AUTISM SPEAKS CANADA walk a few months after my son’s diagnosis. At the time, I had no idea that there was any controversy about the American counterpart of that organization. I fell upon it because it was the only organization that came up when I looked for anything local that had to do with Autism. Since that first day when I met the regional representative who organized the walk, I felt welcomed into a community where I felt like we belonged. Where my family was understood and embraced – flapping, screaming, fleeing, and squealing included. Because we were amongst people who GOT IT for the first time. And so many of those people, like us, were wearing variations of a blue puzzle piece t-shirt with a little personal touch. It was heart warming and emotional to see families come together wearing their matching shirts and caps, and to have my support system by my side doing the same. I have found my tribe, I thought to myself. That’s what the blue puzzle piece emulates for me.

I later learned that initially, the puzzle piece had been chosen as a logo because researchers had sent out to find out the missing puzzle piece regarding the causes of Autism. I too, was on a quest to understand it more. In fact, I had an unhealthy obsession at the time and would lose sleep reading anything and everything I could get my hands on to answer all the questions and theories that my anxious brain was flooding me with. Again, I related to the symbolism of a piece of the puzzle being missing, because it was consistent with what was happening within me too. Over the years, my mindset shifted, and I learned to focus more on the present, and the future. That, too, is part of this puzzle – the unknown… not knowing what the outcome will be until all the pieces come together.

Never once did I think that anything was missing within my son.

Let me say that again. I support the blue puzzle piece and I don’t think my son is missing anything. In fact, I don’t think he’s anything short of perfect. He can be a huge cacahead sometimes, but that’s because it runs in the family – not because I believe there is a piece missing in him. When I found out that so many people are so fiercely against the puzzle piece because they think that’s what it stands for, I was appalled. I was appalled that anyone would think that because I support the symbolism of a puzzle piece, that I think my son is simple and missing something, and then proceed to hate on me because of their misconception of my beliefs.

I was not appalled because anyone has a different opinion that I do. That would make me no better than the haters. I was appalled because of the divide in a community that faces enough adversity already. Appalled that there could be so much hatred for people like me who identify with a symbol that has brought them some solace. I am not appalled by those who prefer the infinity symbol, or the colorful ribbon, or no symbol at all. I respect any differing opinions and expect the same in return. I stand with all neurodiverse individuals and their parents and caregivers, in the knowledge that although our paths my have some similarities, there are likely even more differences, including our beliefs, but that should never divide us.

To me, a puzzle piece is part of a big picture. It takes many individual pieces, unique, in a spectrum of colors, to come together and create something beautiful. Just like individuals coming together to form a family, each with their quirks and sometimes rough edges. Or a community – like the community I became a part of when we began supporting Autism Speaks Canada. The support I got from the people I met through them has been a saving grace during many difficult times over the years. My son and my family have directly benefited from them or contacts we made at the walk. Specialized tennis lessons, informative conferences, free tablet, and the list goes on. Not a single negative experience. I have never understood the hatred associated with the American Autism Speaks organization but the mission, narrative, and values of the Canadian counterpart I support proudly.

And then there’s the issue of the blue, right? Since I’ve started raising awareness, I’ve been all about LIGHTING IT UP BLUE on April 2nd, and when I’m teaching I wear blue throughout the entire month of April and I teach my students why. Why? Because it is the color that is widely associated with Autism. Just like pink is associated with breast cancer and red is associated with AIDS, and purple is associated with epilepsy and the rainbow is associated with LGBT. I wonder if there is as much controversy within those communities as there is in the Autism one about the color blue. My initial research explained that the color had been chosen to represent the prevalence of boys on the spectrum, due in part to the under-diagnosis of young girls, and most likely genetic factors, but also because it is a soothing, calming color. Makes sense to me. So I supported it. And when I read all the counter-arguments, I decided to continue supporting it, because I think it’s beautiful that there is a simple way for family, friends, neighbors, businesses, international monuments, to join a movement and show support. Is it perfect? No. Does it mean that there are no longer bureaucratic injustices and social inequalities for autistic individuals and their families? No. Is it better than ignoring the issue and the cause? I think so!

And so, when I associate with the little blue puzzle piece, I am not suggesting that my son and other individuals on the spectrum are simple or infantile. I don’t think there is anything missing about them or their DNA. I don’t ignore the misunderstood and misdiagnosed females on the spectrum. But I do relish in the support I see on my social media feed when I see pictures of my friends and their kids wearing blue. I do like having an internationally recognized symbol that unites me with other people who live a reality similar to mine. People who advocate and struggle so that their kids have a fighting chance at being treated equally and having fair opportunities to live a fulfilled life throughout their lifespan. For me, that is part of the puzzle, too.

Do I think awareness should be present every day, and not just on April 2nd? Yes. Do I think that being AWARE equals ACCEPTING and INCLUDING, no. But I do think it’s a first step. And I will not be shamed for it. I will continue to share the puzzle piece and light it up blue with pride, and it will continue to make me happy to see you do the same.

Take 2…

I am currently 7 months into my second burnout leave from my job as a high school teacher. It’s easy to pretend that I’m off work because of the pandemic. Some colleagues and social media friends assume that it’s a sabbatical. I’m sure most believe that it has to do with my autistic son being home from school. All of those factors have definitely contributed, but the fact is that it’s me. I’m the problem. And I’m starting to think I won’t get better.

Coincidentally, I am writing this around the same time that my first medical leave started. Back then, I wholeheartedly believed it was temporary. So much so that I planned to be off for the 4 weeks between March break and Easter break because it worked nicely with the timing of the curriculum and it was a neat little period of time for a replacement to pop in and hold down the fort while I healed from the effects of having neglected my mental health for over 30 years. So, as any type A control freak would do, I lesson planned for the weeks I would be off, as well as the lessons I planned on doing upon my return. I was so excited about coming back in April to lead the Autism Awareness campaign I had been planning in my grade and throughout the school. That’s what I do to cope – I plan. I plan and I manage (euphemism for control). I didn’t see it then, but I was so neurotic that I even insisted on interviewing my replacement. Administration humored me. I later found out that my principal knew fully well I wouldn’t be back to finish the school year, but she didn’t have the heart to tell me that. I needed so desperately to believe that things would go according to my cute little plan, which gave me 4 weeks to learn how to cope with a generalized anxiety disorder and recurring major depression. Cute.

About a year and a half into that burnout leave, I received a package from my insurer that intimidated me. I decided I would go back to work at the beginning of the next school year. My therapist, who I had been seeing regularly, didn’t think I was ready, but ultimately it was my doctor’s decision. This doctor has always been supportive and solution oriented. She, too, didn’t think I was ready, but I convinced her that being home was contributing to my depression and she agreed to allow me to return on a part time basis. For a while, it worked. I was back at doing something I was good at. My confidence was boosted with my false eyelashes and nicely coordinated outfits. I made a class full of teenagers do what I wanted them to (for the most part) and sometimes they would humor me and laugh at my jokes. These are all things I miss so desperately now that I’m home without them. As I continued working, I began unraveling again. And so the doctor tried to switch up my cocktail of meds to save me. But I kept spiraling, slipping, drowning…

Then the world shut down because of the pandemic and I could no longer distract myself with going to work every day. Fast forward a few (very dramatic) months and the prospect of teaching in person during a pandemic scared the shit out of me. My anxiety completely took over. I would have nightmares about killing my parents (who live with us) and children because I brought the virus home. Granted, I’m sure most of my colleagues felt the same and continue to do so, but the fact is that the only way I knew how to function in the past few years was by viewing my job as my sanctuary. In my classroom and in front of my coworkers, I was poised and in control – a far cry from what was going on beneath the surface. Knowing that the school environment in the context of the pandemic was high stress and bursting with anxiety, my doctor and I both agreed that it was best I stay away.

This time around, though, I can’t fathom ever feeling well enough to be that poised and in control person every day. With some distance, I realize how much that facade wore me down, despite me thinking that it was holding me up. It could be because the cognitive distortions of my anxiety disorder are making it seem much more unsurmoutable and catastrophic than it is. But how can I mask the brain fog well enough to sound eloquent and educated when I can barely complete simple every day tasks? How can I ignore the fact that, despite all the medication and work I have done on myself, the cycle keeps repeating itself and I find myse…

I’m not going to go there. I will not list all the hardship and dark moments.

The fact is that it’s hard to break cycles. But I can do hard things.

I have done, and will continue to do hard things.

It knocks the life out of me, but it gets done. I am not as strong as people on my social media feed perceive me to be. At least not strong in the conventional sense of the word. Brave, maybe. I read something somewhere once and it stuck with me. I repeat it to my daughter all the time. Being brave doesn’t mean you’re not afraid – it means you feel the fear and go forward anyway.

So even though it’s scary as hell to think I may not ever “get better” and I don’t have a plan for how the next year will look like, I choose to go forward.

As the wise Anna said in Frozen 2, I’ll…

“Just do the next right thing
Take a step, step again
It is all that I can to do
The next right thing
I won’t look too far ahead
It’s too much for me to take
But break it down to this next breath, this next step
This next choice is one that I can make
So I’ll walk through this night
Stumbling blindly toward the light
And do the next right thing”

Little soldiers

I was not born to follow. Over the years, I have embraced my role as a leader, a shaker, and quite often, a shit disturber. It is the source of most of my anxiety. Even when I try to sit in the passenger seat, delegate, or let shit go, I micro-manage in my head, judging everyone’s moves and decisions. I cannot witness inefficiency and injustice and sit back and do nothing. I am a mover. But it comes it a cost. I am rarely at peace, despite meditation, medication, and several lifestyle changes in attempts to be zen as f*ck.

It feels like I have the soul of a revolutionary, perhaps a guerilla warrior in a past life. But my inner warrior cannot be bothered by politics and governmental disasters. Its fire is not ignited by curfews, mismanagement of government funds and ridiculous policies. It is fueled instead by the (perceived) gross injustices in my personal life. Mostly with regards to Giancarlo’s path. And it is the area that my stomping feet and assertive demands have made the biggest impact, but it spills over into other misplaced areas.

Case in point: I have been off work since September and this morning I was getting worked up and planning steps to reform a mundane issue in my former department. Despite knowing it’s not my circus, and those are thankfully not my monkeys, that doesn’t stop the bullet points from formulating, in my mental action plan. And a very convincing speech plays unsolicited in my head. I have pissed off my share of colleagues because of it. But it doesn’t even matter all that much to me! Why can’t I let it go? I know why. Because if my brain and its army are occupied by that stupid shit, then it’s not focusing on my marriage, for example. The speech formulating in my head isn’t about how my husband doesn’t talk to our kids the way I do and or about anything that stems from the fact that, from up top my almighty horse, it is so easy to judge every step and misstep taken by everyone in my house.

So in working on letting those things slide and having a more peaceful and harmonious home life, my soldiers anxiously scan for other revolutions. In writing this, I wonder if the goal should be to get rid of those soldiers, train them to live on a prolonged standby, or embrace them. I have a deep rooted need to have strong convictions and opinions about things at all times. Can that really be ignored or changed?

Photo by Pixabay on Pexels.com

I guess I’ll let you know once I start therapy again and someone answers that for me.

Adieu, 2020

Let me preface by saying that I didn’t hate 2020 as much as it seems the rest of the world did.

Photo by cottonbro on Pexels.com

I needed to learn the lessons that 2020 had in store for me.

I learned that I can in fact keep going long after I think I can’t. I learned that when there seems to be no solution in sight, and all you see is dark despair, there is still a move to make: just look for the next right thing. Sometimes that thing is to let go and let be. Stop trying to fix. Stop trying to anticipate. Sit in your darkness until the next small move appears. Something will make you laugh again. There will be another tiny, tiny breakthrough. And you can hold onto that until the next one. Your intuition will find its voice again.

2020 taught me that, contrary to what my depression fools me into to believing, I am essential.

I learned that Giancarlo progresses and develops more when he is given freedom to do so. His learning doesn’t depend on calendar time, arithmetic and worksheets. I learned that, until this year, I had only pretended to accept that his path was different. This year I let him take the lead, and he blew me away. I am learning to question everything conventional.

In 2020 I learned how to turn off the perpetual manager in my head. The one that always needs a project, prepares for every possible outcome, manipulates and controls those around me… The one that contributes to my self sabotage.

You see, 2020… I didn’t completely hate you. You taught me a lot of important lessons. Ease up a bit in 2021… though, k? I’m still learning.

Sweet spot

As I was lying in bed, scrolling through social media as I often do in an effort to shut out my thoughts, I came across a post in a mommy group that spoke to me. It was a fellow special needs mama, asking where to turn to vent about the challenges of having a different child. Many special needs communities tend to shame moms for even implying that additional needs can sometimes feel like a burden. I replied to the post saying “I don’t know of any such group, but know that you can reach out to me any time you want to vent to someone who gets it.” And then, as one does, I read the other replies, and noticed that another mom had referred the original poster to my blog!

Ok, not gonna lie, I kinda felt famous for a few seconds.

Then I was flattered.

Then I was self-conscious because I was reminded that when you spill your heart out on the Internets, you may actually be read by people who don’t actually know you and therefore support you by default. So I re-read that post, and, much to my surprise, it was actually pretty good! My own writing impressed me. Then I looked at the date I posted it. March 16th. My brain immediately translates that to “3 days after that day”. The day I was pretty sure I had hit rock bottom. The day I lost total hope that anything would be okay, despite all the colorful signs around the city saying otherwise.

And then, in an instant, a live reel plays in my mind, of all the days since that day. How is it that I haven’t written since then? If anyone is actually reading this, I want you to know how many times I have wanted to blog about what our lockdown life has been like, but I never knew how. Most days, it was even too overwhelming to put into words. Still is, actually, even for someone who fancies herself a writer.

Ever since I was very young, writing was my catharsis, but only when I was in the “sweet spot” of any given emotion. Too little (or too light) and I couldn’t translate it into poetry – too intense, or too dark, and I shut down completely.

And so, I suppose that in writing this, I am declaring (mostly to myself) that I am no longer dominated by the despair that over the past few months, has blocked my creative outlet and any other effort I made to take a step towards coming up for air for longer than a few hours at a time. Any short bout of laughter, pharmaceutically-induced peace, or “self-care” indulgences pulled the weight back just enough so that it sent the pendulum thrashing, past worry and exhaustion, past anxiety and pain, landing violently into the abyss of numbness.

But I am writing tonight. Which means I am back in the sweet spot, and it feels good to feel again.

This is not about CoVid19 – Part 2

I see the news and cancellations and the number of infected individuals coming in from all sides. However, I am so consumed by my own perceived catastrophe, blown out of proportion by all the cognitive distortions I learned about during my CBT therapy. But I am too far down the spiral to climb out of it now. I had been counting on meeting with the social worker and special educator to discuss the steps we would take in what the professionals I spoke to at Giancarlo’s school called a dire emergency. Given the CoVid restrictions, our emergency meeting has been postponed temporarily to March 20th, a week away. I realize I am alone, again. I manage to scrape together enough rational thinking to realize that I need to fix my mindset, quick. More despair and discouragement ensue. I observe my mom engaging in blowing balloons and playing barbies, cooking up a meal and caring for my little monsters. They manipulate and take advantage of her weaknesses – she is so worried about me that she just wants to keep them happy so I can stay on the couch and not intervene. What a fucking mess of a mother I am.

My parents decide to take Giancarlo to the chalet with them Friday night. The squeals of joy and happy flapping that boy emits when he is excited – boy, it even made my numbed heart smile. I get up to help him get ready for the trip he is so enthusiastically anticipating. He takes a running start and bodychecks me into a bear hug. This boy loves me so intensely. He needs me to get my act together. They leave and tears are streaming down my face, although I barely notice. I am lost in thoughts I cannot even identify. Rosalia looks up at me and asks “mommy, are you okay?”

Somehow these words come out of my mouth, “Honestly, my love, I’m not so okay right now. But I will be. I just have so many feelings right now that they are pouring out. But I am going to work on finding solutions. I am good at fixing problems. Everything will work out and I will be okay again soon. You don’t need to worry about fixing me.”

Together Rosalia and I create and laminate an activity wheel, individualized schedules for her and her brother, and prep a bunch of activities for our first “homeschool” day when Giancarlo returns from the chalet. We laugh together. I feel productive, proactive, I see glimpses of hope that maybe it won’t be as bad as I am anticipating.

I have been through worse. I need to stop listening to the lies my anxiety is telling me. Andrà tutto bene.

The world is fighting a fatal pandemic for fuck’s sake. My problems pale in comparison.

Andrà tutto bene.

I ran away to a hotel last night. I live a priviledged life, I know. I am grateful for that, but it only adds to the guilt. Look at everything at my disposal and I still can’t snap out of this. I was staring up at the stars last night – something I haven’t done in so long. Cried my eyes out again. And that was it. I decided I was gonna keep fighting.

I took the time to be alone and take a bath and write this blog. In a few seconds I’m closing my laptop and going to pick up my kids from the chalet (I dropped Rosalia off there yesterday). I can’t wait to see them. Wish me luck!

This is not about CoVid19

Except it kind of is. You see, this quarantine came at a time when the worst possible thing I could imagine was being in close quarters with my kids 24/7. In fact, in the days prior to the quarantine, at the end of the school day, I would sit in my office, put my face in my hands and break down crying at the thought of going home to my kids. What kind of a monster of a mother does that?! It’s hard to admit. I am ashamed. But it is the truth. I have been in a depressive state for a while, and the only thing helping me to keep my head above water (besides meds) is the fact that I would force my ass out of bed, dress like a professional, and go to a job I am good at. No matter how heavy my heart was and how many tears I fought on the way to work, the load lightened as the day went on – a silly comment from a teenager in their broken English, extra endearing because of the effort to connect with me despite the generation gap and language barrier; the sweet “thanks for the class, miss!” when exiting the classroom, making me feel like, maybe, just maybe, I still got this despite my world falling apart. And my rock, my colleague, who pops into my office to eat lunch with me and naturally brings out the “me” that I have lost. The “me” that laughs, the “me” that loves hearing about wedding plans, the “me” who still sees humor in things, the “me” that can still find solutions… the “me” that gets lost once I pull into my driveway and I am overcome by something similar to a vacuum sucking out everything from your breath, to your voice of reason, leaving you empty.

Obviously I didn’t get to this point overnight. It’s been a slow and painful downward spiral, an accumulation of mental surcharge, juggling everything a typcial high school teacher would, in addition to weekly appointments with a social worker to animate family meetings regarding our differing parenting styles (my parents, who live with us, have basically been co-parenting and consistency is a huge challenge). To that mix, add a change in special educator assigned to our family, emotional fatigue, and physical abuse. From my 8 year old son. My 130 pound 8 year old son with defiant behavior disorder, in addition to his Autism and lack of impulse control due to his ADHD.

His violence has been something I have asked for help on for years. The multidisciplinary team supporting us through it has changed members several times, each with a different philosophy, way of working, observation periods, charts to fill, medications to adjust, advice to give… but at the end of the day, my bruises keep multiplying, both on the outside and, the ones that heal less easily, the bruises on my heart. I stopped believing this would ever get better. And to add salt to a very open wound, his psychiatrist last week, after agreeing to try a new med, added that changing doses and molecules will be en eternal cycle until we place him in a center. Put him away. My sweet, joyful, affectionate boy. Torn from the people he loves so intensely. That is the solution I was offered.

I spent the next few days on the couch, in a bit of a haze. Alternating between despair and numbness. When I was finally able to put into words all the noise that was in my head, I reached out to other professionals. I tried to make a plan. It’s how I deal. I plan. Except, what was missing this time was the convinction that my plan would change anything. And then the dispair comes back and I am back on the couch crying. In the meantime, my mom has stepped up to care for the children. When I finally give in to their pleas and requests for mommy, I try to put on a face and participate in an activity. Giancarlo wants to bake a cake. It’s something he has recently taken an interest in and I have stocked up on Betty Crocker mixes. His energy level is through the roof – a mix of excitement and anxiety. I know him well enough to notice that we need to write down the steps before starting. Reading gives him the pause to breathe, and the structure offered by a written enumerated plan also calms his anxiety. It was a strategy I had used effectively many times before. Except, he started insisting that we should not add salt. “No, Giancarlo, no salt”. “NO SALT, NO SALT NO SALT!” He bangs his elbows on the table The escalation has begun. “Giancarlo, no salt, look, first…” and I read the steps I have coped down from our trusty Betty Crocker box. “No salt mommy!” “No, my love!” (me trying to remain calm) He must have taken my no as a denial of his request for no salt. He skipped three levels of regulation and went full-on apeshit. Threw himself on the floor, punching the legs of the table, knocking over the mixing bowl. I get down to his level to try to reason with him, because clearly there is a misunderstanding. He locks eyes with me and reaches for the hair near the nape of my neck, right where it hurts most – his favorite spot. What happens next is a blur. I just know that how I reacted was out of character for me. “Me”. God, I can’t even recognize myself anymore, neither in my actions, nor in my parenting, and much less in the thoughts that have flooded my brain lately.

And then comes the news. Schools are closed for at least 14 days. WHAT THE FUCK AM I GOING TO DO?!

My mommy and her monsters

I’ve been trying, unsuccessfully, to put into words what has been going on in my head and my heart. The weight on my chest. The quiet, yet high-pitched ringing in my ears, constantly reminding me of the blast.

“How does it feel when a bomb goes off?”

“What are the symptoms of shell shock?”

“truth bomb”

These Google searches led me to sites ranging from party games to Hiroshima, but nothing close to what I have been feeling. A confusion so deep that it blurs all the other emotions like a fog hovering over the debris. Now that I think about it, maybe it wasn’t a bomb that fell over us that day. Maybe it was more like a volcanic explosion. Years of secrets, rage, and fire brewing, brewing.

active ash cloud ashes blaze
Photo by Pixabay on Pexels.com

“There are several different causes for a volcano to erupt which all fundamentally come down to a  pressure change within the volcano which forces the magma to overflow the chamber it is held in.”

That chamber was my mother’s heart.

For as long as I remember, I knew that my mother carried many secrets that weighed heavily on her. In recent years, I even thought I had figured them out. But I had no idea. None of us did. No one saw this coming.

The thing is, despite having spent her whole life shielding everyone from the truth, my mom is finding her words. Perhaps that is why I cannot find the words to write about this. It is not my story to tell. But I had to say something. I could not contribute to the silence.

Silence.

I used to fear silence as a young girl. There was something so gloomy and heavy about it. In recent years, though, between teaching in a language classroom and raising two boisterous little humans, silence has been a rare commodity. In managing my own very loud anxiety, silence became therapeutic. But since that day when my mother broke the silence, it carries new weight. A weight that is too much for my chest to bare. Silence is piercing now. Cuts my breath like razor blades. Squeezes my heart so hard that I want to scream.

But scream what?

It is not my pain.

They are not my monsters.

 

 

 

 

 

 

Powered by Love

Yesterday, on my birthday, I addressed the crowd at the 2019 Autism Speaks Canada Walk, on behalf of my little monsters who were this year’s walk ambassadors. Giancarlo and Rosalia blew me away yesterday, holding hands and marching proudly as the crowd followed them. Sun shining, surrounded by the people I love most, watching my kids walk ahead confident and happy – it was the greatest birthday gift ever.

Just look at this pic. Tell me I’m not the luckiest person in the world. Go on, try. I would never believe you. I have everything I need, right here. We are Team GiaGia, and we are powered by love.

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Good morning to all,

First and foremost, I want to thank Krista for once again putting together a beautiful walk. This event has been important for my family for many years, because, as it is for many of you, it is one of the few events we can attend that is free of judgment. Instead, there is a beautiful sense of community, solidarity, understanding, and the comforting knowledge that we are among our tribe, joined by a cause that is dear to all our hearts.

It is for that reason that I was so honored when my children Giancarlo and Rosalia were asked to be ambassadors for this year’s walk. Giancarlo is 7 years old and if he were able to get passed his anxiety and address you this morning, he might tell you how excited he is that there is no school today and how much he loves the bouncy castle and bubble makers, but he doesn’t understand the honor that was bestowed upon him as ambassador. His 6 year old sister, Rosalia, however, does. She knows that she was chosen as co-ambassador because it is important for people to know that Autism doesn’t only affect the individual, but it affects siblings and family members alike. She knows that her role as a sibling is an important one, and she has a wealth of experience to share about living with a brother who is on the spectrum. The problem, though, is that Rosalia is extremely shy. She accepted to be ambassador on the condition that she wouldn’t have to talk on stage, so I am humbly speaking on her behalf.

I also spoke on my children’s behalf several times during this year’s Autism Awareness Campaign leading up to this walk, and very often, the main goal was to demystify what it means to live with Autism Spectrum Disorder. However, I won’t stand here this morning and lecture you about it. If you are here today, it’s because Autism has touched your life one way or another. You may have witnessed, from near or far, the ups and downs of being on the spectrum. Like me, you know that for every small victory we celebrate, there have been obstacles and struggles that preceded. Like me, you also know that none of the victories, big or small, are achieved alone. If you are here this morning, it’s because you’re part of someone’s tribe. Someone’s village. And on their behalf, I thank you. Whether you are a family member, a friend, an educator or a cheerleader for someone on the spectrum, the fact that you are here, wearing your team tshirt proudly like a loyal fan, it means the world to someone. I know it does to me.

Team GiaGia is my tribe. They are the village that, through their love and support, are helping me to raise Giancarlo and Rosalia, who BOTH live with Autism and its challenges. Yes, Rosalia is neurotypical, but she is still very much affected by it. From a young age, she was aware of the fact that her older brother wasn’t able to do many of the things she was quickly learning. She learned early on to stand up for herself when she felt that she wasn’t getting a fair share of attention, as Giancarlo’s special needs took up such a large part of our time and energy. She started worrying a lot too – more than anyone her age should. For example, it worried her, and continues to worry her, when Giancarlo is having a meltdown and I intervene. She worries for my wellbeing. She worries about going to or missing out on events that would be too overwhelming for her brother. She is constantly faced with the conflict of caring for her brother and finding her independence from the weight of his disorder, and that is something she, and other siblings, might live with all their lives.  On the playground or at the park, to decide between playing with the other children or staying behind trying to help her brother integrate into the group. As she grows older, the decisions will become more complex. So, yes, Rosalia has a lot to bring to the table as an ambassador for Autism Speaks Canada, even though she herself is not autistic. She is, though, very much part of the village that is helping me raise Giancarlo. She is his translator, because when he struggles to make himself understood, she is often the one who can decipher his sometimes cryptic requests. She is his ally, his guide, his positive role model, and his best friend, and although Team GiaGia is named after Giancarlo, she is as much a star of our team as he is.

And what a team it is. Team GiaGia is a team composed of not only these little ambassadors and their mama, but also a supportive and loving father, grandparents who are generous with their time, energy, and are basically co-raising Giancarlo and Rosalia, educators whose dedication towards Giancarlo’s success is surpassed only by their patience with him and with me! Team GiaGia also has a large following on social media and the outpouring of love and support that I have received through them has given me strength during many difficult moments. The same is true for the family and friends walking with us today, some of whom travelled all the way from Ontario. It is such an honor to have you all in our corner, wearing our team name on your hearts. All the walkers today are doing that for somebody. Know that if you are here, you’re making someone’s load a little lighter and their heart a little fuller. Every team has a story. Every team has its cheerleaders. And every team is powered by love. It is a true privilege to stand before all of you this morning and be witness to such love, and I can’t wait to see that love pour onto the field when the walk begins in a few minutes. However, before it does, know that we are walking with you. Not only on this walk, but on this journey. Whether you are raising or supporting someone on the spectrum, whether you are a grandparent, sibling, or friend, we see you, we applaud you, and we are honored to walk beside you.

Without further ado, and on behalf of the ambassadors Rosalia and Giancarlo, I wish you a beautiful walk.