Dear everyone that crosses my family’s path in public,
Yes, my son is 5’6, 190lbs and likes talking like a baby voice while making hand puppet gestures.
Yes, he might ask you random questions like “do you like stinky cheese?” or whatever comes to his mind, because he has no idea how to properly interact with people.
No, he doesn’t notice when you stand off to the side and whisper to each other about him.
But, yes, he does notice when you ignore him. When you are standing within earshot of him and he says “excuse me mister! Excuse me!” and he looks at me to come to the rescue, as I usually do when he wants to interact with strangers (as he so often does), how do I explain that you do in fact hear him and see him but choose to avert your eyes?
He doesn’t understand what it is about him that makes you uncomfortable.
He doesn’t mind that you make fun of him. As long as he sees you laughing, he does too.
As a mom who’s been struggling with managing his intense rage that has been taking over our lives, I hang onto every smile, every laugh. That’s all he wanted from you. That’s all I wanted as well.
You could have smiled and walked away afterwards, whispering whatever you wanted under your breath. But you could have given us a smile. A nod. A look in the eye.
Facebook reminded me of this memory today – a throwback to simpler times. Chilling with my baby boy and growing my sweet girl in my belly. Full of hope. Confident that things would get easier once my difficult pregnancy stopped wearing me down and I could be the mother I always dreamed of. So proud of all the milestones my son was crushing, like they were proof I was succeeding at motherhood.
You know what I noticed first in this picture? That he was wearing jeans. My boy, in jeans! For the past few years he can barely tolerate jogging pants.
My life was going EXACTLY as I had planned it.
And then it didn’t. And the floor got stolen from beneath my feet and I spent 9 years desperately trying to regain the control I once (naively) believed I had over anything.
My sweet, baby cub. Mama bear had so much to learn about life back then.
I put on a pair of black pants this morning. It’s the first time I wore black since you’ve been gone, which is ironic, because I had a black outfit planned out for months, anticipating the day we’d receive that call.
But when we did, I didn’t feel the need to stand over your grave and say any final words. I said everything I had to say to you while you were still here. And I wasn’t going to stand there and wish you well, either. I couldn’t wish you harm though – that would make me a monster too. Instead, every time I think of you, I wish you what you deserve, and I remind myself that I’m not the one who gets to decide that.
My daughter asked me if I was sad that you were gone. She was wondering if she should be sad too, I guess. At that moment I hated you. I hated you because I was scared. And when you’re scared, it’s so easy to blame others. I realized that I was so scared that I wouldn’t be able to stop the cycle. I felt like in that moment, the words I said to my daughter would determine whether I passed on the toxicity and dysfunction another generation, because hiding the truth in order to protect the ones you love ends up doing that too. So I told her, this vulnerable and confused 9 year old, that I wasn’t sad to have lost the person you had become. I had been sad years ago, when I mourned the person I thought you were. The one who adored me, who found such joy in my children’s presence, and seemed to love them genuinely. I was sad to have lost the person who I shared so many happy childhood memories with, and who was admired by so many. I mourned that person a long time ago, even while looking straight at you and not recognizing the person looking back at me.
For the first time in my life, you looked at me with a piercing hatred. Your eyes were black as you spoke to me with a disdain I had never experienced before. It took me so long to reconcile how that could be, and the only answer I had is that you were not the same person. It was this “other” you that spewed venom all over me, and threatened to set me and my children on fire while we were sleeping. So no, I was not sad when I found out that this “other you” had crossed. I didn’t feel guilt either. My conscience is clear, and now you will face judgment for yours.
I stared at myself in the mirror in my black pants for a few minutes and proceeded to dress in black from head to toe, which is out of character for me. I didn’t do it out of mourning, but rather to prove to myself that I am also not running away from mourning you. Every time I cross a mirror today I will be reminded that I did in fact break the cycle of hiding truths for appearances, and I will hold my head high, with the integrity of knowing that I made hard choices. I can look at myself and be proud of my reflection. I don’t know if you were able to do that, but I realize it is not my burden to figure it out.
As I write this, I should be on a beach in Punta Cana, but I had to cancel that family trip because my daughter caught COVID. Unpacking the suitcases was hard but I tried to stay light and cheery and all “silver lining” for her sake, because she felt terrible for being the reason our trip got cancelled.
My mental health had been plummeting before that blow. Doctor changed my anxiety meds and I was seriously off balance and more anxious than I had been in years. Painfully so. And then, as it usually does when it hits a peak, it turned into darkness. Really inconvenient timing to be depressed when you find out you will have to care for your needy children 24 hours a day for the next 10 days. But I did it. My daughter went back to school today, healthy and happy. And I’m sitting here, alone and in silence, with a heart so heavy I can barely breathe.
I want nothing more than to shelter my kids from my my mental health struggles, especially during the holidays. I want to give them the magical, joyous, festive Christmas they deserve, and I have no fucking idea how I’m going to pull that off.
Magic of Christmas!
But out of nowhere my daughter asks me about the Tooth Fairy.
“Mommy don’t lie.”
“You’re doing that smirk thing.”
“Mom! And the Easter Bunny?”
“Oh God, mom, Santa too!?”
It all happened so fast. Neither one of us was ready for that. It felt like all the twinkling lights and sparkly glitter just went dark. Like my heart.
“I can’t even look at the Christmas decorations anymore without being disappointed,” my 8 year old said with her usual drama and tears in her eyes.
Me too, baby girl.
None of this is tragic. Intellectually I know that. We are heathy, we have each other, we are fortunate enough to have the means to get our kids gifts they will be excited about (and yes, I assured her that there would still be a lovely gift from “Santa”). With some perspective, I realize that my reactions are not proportional to the actual size of the problem. But that doesn’t make it easier for me. I wish I could carry things better. I wish these little things didn’t feel so heavy. I wish I didn’t always feel like I will snap at any given moment if there is a minor setback. I wish my brain would give me a fucking break.
I wish that there was such a thing as a Christmas wish. Or at least for my daughter to believe there is. Because seeing the joy in my children’s eyes is what reignites my dimming light. So I need to find a solution and pull that joy out of somewhere on time for Christmas.
Some days, everything feels just so heavy. The rain pounding down on freshly fallen snow on a dreary grey day. Heavy.
Holding space for a slightly manipulative 8 year old who feels a bit unwell and wants to be blanketed with every ounce of your love and doting when all you are so desperate for is some space to catch your breath – heavy.
Doing the right thing and speaking your truth when you know it will fall on poisoned ears, heavy.
Wanting to control everything when you can barely control your own thoughts… the weight of everything that could possibly go wrong piling up on your already burdened chest, making every breath unbearably heavy.
And yet I carry the weight. It’s as much a part of me as the extra weight in my hips and my uncontoured face. A sign to some that I’ve let go. If only they knew, though, how badly I wish I could. Let go. Of everything that is so heavy.
It’s called The F*ck It Diet. A nutritionist recommended that I read the book, and it has been challenging almost everything I have ever believed about my body and its relationship to food. Every since I was a heavy and big boned 9 year old I have been conditioned to believe that there were certain foods I needed to avoid. For the most part, there was no junk in my house. Only muesli cereal and multi grain crackers that might as well have been cardboard. Then Pillsbury Raspberry Struedels appeared in the freezer and you best believe I attacked them. But for the most part, it was yogurt and fruits and sugar free peanut butter for breakfasts, and when I continued to gain weight, the doctor told my mom to limit the fruits I ate. I wasn’t even 10 yet, was already on my period, and a doctor told me to eat less fruits cuz I was chunky. It was only when I started reading this book that I realized how fucked up that is.
I have been every weight. When I got married I was thinner than I had been all throughout high school. Funny thing is that while I was at my thinnest, I wasn’t actually restricting what I was eating. I was just crazy in love (there’s probably another book about that.) It was the nutritionist that made me realize that if I was listening to my body and eating whatever and whenever I wanted during the only period in my life that I was thin, and I spent the rest of my life heavy and restricting carbs, sugars and fats (except for when I was on my high fat keto bout) but my weight was still “out of control”… then maybe eating less was not in fact the solution. It took a long time to wrap my head around this. Still am, actually.
I had always been careful not to use the words “diet” and “fat” or “gain weight” around my soon to be 8 year old daughter, but diet culture got to her anyway. She would get disproportionately excited when I announced I was having a cheat night and we’d share treats, and she was recently astonished when I had some pasta that I prepared for her, and went on to join her with her nightly cookies and milk before bed. I had a conversation with her that I was done depriving myself, and although I might have a bit more belly jelly, I was going to eat what made me happy and I was going to enjoy it. She looked worried. After some prying, she admitted that she doesn’t want me to gain weight. She wouldn’d explain why. I knew that I found the F*ck It Diet too late and that I had already begun damaging my daugher’s perception of what an ideal body should look like.
I still have a lot of de-programming to do and I know that when I start wearing real clothes again (thank you, CoVid) I will have to re-learn how to dress a curvier body and still be confident. It was easier to be confident before I tasted skinny and dressed a thinner body. So many more clothing options and fashion freedom. I could blame the fashion industry and music videos for that, but it’s not about blame. It’s about owning your body the way it was intended to be, which I am working on.
Now, it doesn’t help that my son is obsessed with re-enacting gender reveal videos. You’re probably wondering where I’m going with this. Several times a day, he points at my belly (which is rounder than it’s been in years thanks to being reintroduced to a healthy amount of carbs) and exclaims, with copious amounts of joy and enthusiasm “YOU PREGNANT MOMMY!?!”
“YES MOMMY IT IS! YOU BE PREGNANT!”
Nope, this is what my body looks like when I actually feed it, little man, but thanks for being an asshole.
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.
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.
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”
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?
I guess I’ll let you know once I start therapy again and someone answers that for me.