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.

62309465_2351944128354576_8853547023064891392_o

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.

Post-Mother’s Day Post

I’m sitting in class, affectionately watching my students with their faces in their laptops, pretending to do the grammar exercises that I assigned in their online workbook, but my mind is elsewhere. I brought my cell phone with me to class today, which I never do, and I was fully expecting it to blow up with texts, but not a single one came through, which makes me even more nervous. You see, this morning, for the first time ever, my husband is taking care of putting the kids on the bus ALL. BY. HIMSELF.

Obviously, before leaving the house at 6:45, I made the kids’ lunches, prepared their breakfast, crushed Giancarlo’s cocktail of meds and stirred it into the peach and carrot flavored apple sauce that he likes best, I packed the school bags and put their school shoes by the door, but I didn’t prepare ALL their clothes. Would Rosy remember that it’s spirit week and today she could wear the sparkly emoji shirt instead of her usual uniform? Of course she will remember – we left it out last night. But I didn’t get her sparkly tights out. I should call. No, Carlos needs to feel like he can do this on his own. It’s important for me not to be that nagging bickering wife that makes him feel useless. He wasn’t nervous about this morning at all. Why would he be? First of all, he is too macho to show any kind of weakness, and secondly, he doesn’t have any real idea of what it entails. Whose fault is that? Not his.

Anyway, of course I ended up calling. Who are we kidding? But I was sneaky – I asked to speak to Rosalia, and reminded her about the sparkly tights myself. And to tell her father to tie her hair. And to watch the clock. When she passed me back to her father, I was all “you got this babe, super dad!” I just sent him a similar message congratulating him for surviving and getting both kids to their separate buses on time. He did it! Truth be told, I didn’t have much faith that it would happen. It was probably a shit show. Actually, my kids are such little shits that it probably went super smoothly, just to prove me wrong and make him think it’s that easy all the time. No arguing about what goes in the lunch, no dragging them out of bed, no chasing a naked stinker around the house, then dodging kicks to the stomach to give him his meds. Guaranteed, those little monsters were on their best behavior with dad.

Should I not have done those extra steps to facilitate his task this morning? If I hadn’t, who would have suffered? Everyone but him. I would have been agonizing all morning, no – all day, wondering if the kids had a good enough lunch (we all remember how judgy lunch monitors can be, don’t we?) I would have spent all day feeling anxious about Rosalia’s possible disappointment if she had gone to school without her sparkly tights, and as that disappointment would evolve to wrath, it would not be directed at the adult who helped her get ready this morning, no, it would be directed at me, the Doer of all Things. But, as several therapists have pointed out to me, if I do all the things, then I don’t leave any space for someone else to do them, because they are done. All the time. Because if I don’t, my mother, the Queen Doer, does. And Papa barely even notices.

Except when he writes you a sweet Mother’s Day card thanking you for being the Doer of all Things. This post may have gone very differently if he hadn’t!

purple petaled glower besode pen
Photo by Giftpundits.com on Pexels.com

Meltdown at Maxi

No, Giancarlo didn’t have a meltdown at Maxi (yet). It’s been years since I’ve ventured into a grocery store with him. I actually have a trip planned there during March Break and his special educator will come to observe and help – that’s how well I anticipate it will go. I have been lucky enough to be able to schedule my errands so that I go alone. In peace. And it was peaceful until I heard someone’s child losing their shit. I could hear it a few aisles away, and the tightness in my chest got worse as I approached. So did the looks on other shoppers’ faces. The eye rolls, the whispers between couples. Maybe they, like me, were wondering what set the kid off, or maybe they were judging the mother. Mostly, though, everyone just wanted to get on with their groceries undisturbed. As I pushed my cart closer to the hollering child, I tried not to make eye contact so as not to make the mother feel like she was being watched or judged. In my peripheral vision, I could see the child’s feet kicking and arms flailing as his mother kneeled on the floor beside him with a hand to his chest in an effort to either restrain him or calm him. Shit. Ok, Jenny. It’s not your kid. Breathe. Just go get the orange juice you need. Breathe. His mother will take care of him. Your kids are with their grandparents, they are fine. Focus on your breathing. But I can’t. The kid’s “NOOOOOOOOOOOOOO” pierces my soul and shakes me to the core. I turn around and walk towards the mother and I see her telling her son “c’est fini” (it’s all done) while doing the sign for it with her hands, and then she looks right up at me apologetically. There it is. I had known it from the 3 aisles away, but now it was confirmed to me. This is an autistic meltdown, not some bratty tantrum. I try to give her my most compassionate look as I too kneel down beside her son. I asked her what I could do to help, but she was too busy apologizing. I put my hand to her arm and tell her I am an autism mom too and I understand. And then she starts bawling her eyes out. My heart breaks in a million pieces. As I am trying to figure out what to do next, I notice the boy standing beside me asking his mom for his hat. I get it for him because his mother has the same spaced-out look I get after Giancarlo snaps out of his fits. I don’t know at what point the boy stopped screaming and stood up, it just happened in a split second. The mom was visibly shaken but just thanked me, dusted off her pants, took her son by the hand and led him to the cash with her head down, avoiding eye contact with anyone who had been watching the scene.

Why do we, as mothers, feel so ashamed when something like this happens? Why do people tend to act annoyed by it, or choose to ignore it? Why is it so shocking that someone would try to help?

As she struggled through the self-checkout with her son touching everything and unpacking the items she put into the bag, I couldn’t take my eyes off of her. She looked like shit. Eyes bloodshot and teary, trembling and trying to hard not to snap, I was overcome by admiration for her. I would have left without my groceries. In the past, when I was in her shoes, I have. And I have sat in the car hyperventilating and crying as Giancarlo, unphased, babbles happily. He is so sweet post-meltdown. I hope her son is too. I hope the worst is over for her and that little boy. I wish I had told her that brighter days will come again. I wish I had told her she had nothing to be ashamed of. I wish I had told her she is brave.

 

 

Let’s talk, for real.

Mental health. Merriam Webster defines it as follows:

1: the condition of being sound mentally and emotionally that is characterized by the absence of mental illness and by adequate adjustment, especially as reflected in feeling comfortable about oneself, positive feelings about others, and the ability to meet the demands of daily life.

Spoiler alert: I have been experiencing mental illness on and off for the past 6 years. That is the modest estimation. A more accurate statement would be that I have dealt with depression, anxiety, and disruption in normal thinking my whole life. I was recently off of work because of my mental illness for about a year and a half.
Are you feeling uncomfortable yet?
I have been known to ruffle a few feathers, but few things make people more uncomfortable than a seemingly strong woman telling you that she is mentally unwell. Because what does that even mean, right? Am I going to go apeshit and stab you in the neck with my pencil if you say the wrong thing? Will I be so overcome with melancholy that I will be unable to speak between sobs? Will I prance around chanting hare krishna between yoga poses? No, but I will most likely have to fight for every breath to get past my diaphragm without it being painful. I will most likely snap at the first whine that comes out of my children’s mouth and I will spend most of my energy deciding whether to ignore or act on the annoying voice reminding me what an inadequate mother I am. I will likely spend all night awake ruminating and the next day my state will be worsened by the fatigue. I haven’t figured out which part of all that is perceived as a threat to people, but I have often been treated as though it is.  In the past, I often alluded to my mental health struggles with humor, but even so, it has often been met by judgment. You’re not supposed to be bothered by people judging you, because you know better, right? But when the people closest to you have gossip sessions about your spiraling behavior and questionable decisions instead of acting on your cries for help, it hurts. Yet, our first reaction is to judge. What a drama queen. She’s always acting like the victim. Too lazy to work. Always making up an excuse not to come out. All of a sudden all she wants to do is go out? She seems perfectly fine to me. Her mother takes care of her kids for her, what is she complaining about? What has NOT been said about me?
I suppose that just by writing about it, it seems that I’m looking for attention. I am not. Nor do I want pity. What I do want, though, is to spark some reflection and compassion. Instead of engaging in gossip, check in on someone who seems to be acting differently. Instead of resenting someone who repeatedly cancels, try to understand why. Instead of name-calling, let them know you are thinking of them. Offer to visit. Tell them you don’t respect them less simply because they cannot function on the same level they expect to. No one wants to be unable to work. No one wants to depend on someone else to take care of their kids’ basic needs. Mental health or the lack thereof is not a choice, so why do we judge as though it were?
If you follow the social media trends and share the hashtag or use the filter, good for you. Thank you for spreading awareness. What we need more of, though, is acceptance. Accept that not all disabilities are visible. Accept and understand that some people have triggers and fight battles that you have no idea about. Recognize that what goes on beneath the surface has nothing to do with makeup being done or a smiling face. It has nothing to do with how many blessings a person has, how much money they make, or how difficult their kids are, and it doesn’t mean that they think your life is easier than theirs. And if you are on the receiving end of those judgments… if you are the one struggling… never apologize to others for their misunderstanding of who you are. You keep fighting. Your breath will get lighter again and the wave of darkness will eventually retreat and the ebb and flow of light and air will resume its natural course… and you will be happy again. I know. I am.

Happy birthday, Giancarlo

So much has changed since I wrote this letter on this day 3 years ago. You are now terrified of the happy birthday song, so we will not in fact be singing it tomorrow. I no longer bring you to therapy because I don’t have the physical strength to drag you there or back on task when you act like a stubborn little brat… but I am still so proud to be your mama. You still amaze me every day. You still give me strength every day, and I am still so grateful that you included me in your miracle.

Cue the tears.

A letter for my son… (2015)

Dear Giancarlo,

Two years ago, on November 16th, 2013, we had to cancel the party I had been planning for you the following day… because you had been sick, but it wasn’t until that day that we understood how serious it was. Your kidneys were in bad shape. You were diagnosed with Nephrotic Syndrome. The next morning, on your second birthday, you took your first aggressive dose of a strong steroid which you’d continue to take for months. You suffered so much from the side effects… emotionally and physically. Deep down I believe that it’s not a coincidence that the symptoms that later led to your Autism diagnosis started during that time. But those nasty meds saved your life. Two years ago, the specialists told us that this syndrome would be our new way of life. Your kidneys would be in danger every time you caught a cold or a virus. We would have to limit your contact with others during flu season and keep a close eye on the protein levels of your urine. We were told that, in a best case scenario, you would outgrow it when you hit puberty. Relapses would be frequent in the first year, we were told… and only 5% of all patients with Nephrotic Syndrome do not relapse.

Well, my little champion… you showed them! Today marks the anniversary of the scariest day of my life and I couldn’t possibly be any happier to say that those kidneys of yours are miraculous! How many people really get to say that they’ve beaten the odds? Thank you for including me in your miracle.

Tomorrow is your birthday, but unlike most 4 year olds, that means nothing to you. You’ll go about your day in the same way, bouncing and flapping with joy at the simple things that you find so amusing. When we sing “Happy Birthday to you” and you blow out your candles, you may just say “Happy Birthday to me”, right on cue, because it’ll remind you of the episode of Wallykazam when the Cake Monster says that and it cracks you up each time. To others, it’ll look like a perfectly normal reaction from a birthday boy, but I’ll know that it’s your echolalia and the way your brain makes rigid associations… but I’ll still be so proud of you. For the first time since your second birthday, I’m not terrified for your future. Your immune system is strong enough to allow for a “normal” life and your ability to imitate “normal” and “expected” reactions might just be enough for you to have “normal” relationships when you are older. In the past few months, you have worked so hard in all these different therapies we’re putting you through, and you are flourishing. And you’re happy. And I couldn’t be any prouder of you, my boy. Your energy and your challenges test my strength every day, but you give me strength every day. Thank you for choosing me as your mommy, Giancarlo. On November 16th, every year, I will allow myself to get emotional and nostalgic like this… but tomorrow, on your birthday, I promise to do nothing but share your joy. I can’t wait to see your eyes light up when I surprise you with cake and candles at school. Because you love cake. And when you say, “Happy Birthday to me”, I’ll say it right back to you, with nothing but pride and joy.

To three or not to three…

In the past hour, I went from having a conversation with a new mommy about how shitty and rewarding motherhood can be, to finding out that a girlfriend just gave birth, and another girlfriend is expecting her third. Cue baby fever.

baby bed blue blur
Photo by Pixabay on Pexels.com

I’ve always wanted to be a mother. In my early 20s, I chose my career so I would have the same spring break and summer vacations as my future children. I tried for my second when the first little monster was 9 months old (and got knocked up on the first shot!) All I’ve ever wanted to be was a good mother, but I had no idea what I was getting myself into. I am barely making it with 2… so why, oh why are my ovaries crying for a third baby right now?

Is it the finality of it, because I am approaching an age where said ovaries will begin shriveling up? Is it because of that conversation hubby and I had on our last date night, when after too much wine, he admitted that he always wanted to have another baby but felt bad telling me cuz I had been struggling so much (and I broke down crying in the restaurant)? What a mindfuck that was. I really had no idea before that. If I had known, maybe I would have hesitated a bit before selling every baby item we had owned on Facebook Garage Sale. Maybe Rosalia has started wanting to hold onto everything because she knows something that we don’t. A clairvoyant did, in fact, tell me once that my daughter had special powers… but I digress. So, ya. There’s that. Do I really want to buy everything all over again? New crib, new stroller, new swing, new everything that we now consider necessities when bringing a human into this world?

But here is where the inner conflict begins. Giancarlo loves babies. Rosalia would be over the moon if only we could give her a baby sister. And the truth is, it will likely make her life easier when she is an adult because otherwise, she will bear the weight of her aging parents alone. Not only that, but if Giancarlo continues on the same path, he may need a caregiver even after we are gone, and that will rest solely on her shoulders if she doesn’t have a sibling. And what if she doesn’t want kids? I will never be a grandmother. Unlike my husband, I have no delusions. In no world will Giancarlo be able to be a father. There – I said it. But I want to have a full table and little monsters running around at Christmas time when I’m in my golden age. Maybe the only way to secure that is to bite the bullet and get cracking on another baby.

Then there is the elephant in the room: what if this third baby is as high needs as Giancarlo? I’m not sure I could handle that. No, I know I COULD handle it because I have a great support system… but I don’t want to. Does that make me a terrible person? Maybe. If I could make some kind of contract with God and have a guarantee that my third child would not be handicapped, I think I would do it. I mean, I could get the crib and baby swing, second hand, right? Easy peasy. Sleep deprival? I already don’t sleep! Might as well shove a bottle in a baby’s mouth while I’m awake! Money? We would find a way to manage. My mental health? Oops. You got me there. My last postpartum depression lasted 5 years. That’s only a slight exaggeration. I am scared shitless of losing myself and my sanity again. So just like I have always done when I walked past a pregnant woman or held a newborn in my arms, I am going to tell my ovaries to shut the fuck up and leave me alone, and I will ignore the pang in my heart, and convince myself that I am fulfilled with two little monsters.

Or not… for as Paul Arden once said, is it not better to regret something you have done than something you haven’t…

Mommy and the inadequate lunch

Last week it was implied by my daughter’s lunch monitors that I am an inadequate mother. That morning, I left the house before anyone else woke up, so I didn’t have the chance to ask Her Royal Highness Rosalia what she wanted me to pack for her lunch. This has become quite the issue at home, and despite choosing what goes in most days, she ends up eating like a bird and half of it comes back intact. Knowing my daughter’s preferences, I CONSCIOUSLY packed her a variety of small portions, which I judged to be balanced and complete when combined. You see where I’m going with this, don’t you? I left the house at 6:40am that day, and only returned after 6pm, at which point I was greeted by a fuming Rosalia, hand on hip, attitude at full speed: “MOMMY WHY DIDN’T YOU PACK ME A LUNCH TODAY?”

Confused, I asked her if she had forgotten her lunch box. My mother, who I am lucky enough to have around for help, informed me that Rosalia did, in fact, bring her lunch box, but because I had forgotten to pack a sandwich, the lunch monitor lent her $3 to buy one at the school cafeteria, so I now owe them money. Wait a minute. What? I didn’t FORGET to pack a sandwich. I packed carrots and hummus and cheddar cheese, grapes, and 2 snacks… ALL OF WHICH WERE STILL IN HER LUNCH BOX. All she ate was the $3 sandwich that someone other than her mother decided would be a better choice. At this point Rosalia interjects, hands still on her hips, eyes still squinting with attitude… “ya mommy you only put me snacks!” I saw black.

wheat bread sandwich
Photo by Suzy Hazelwood on Pexels.com

My mother didn’t understand my fury. After all, she is an Italian nonna and she likes anyone who feeds the people she loves. There are few things more important in my mother’s world than having a full stomach. But that isn’t the point. The point is that if my daughter had eaten what I packed for her, her tummy would have been full. I didn’t want it to be full of a big bun and cold meat that day. If I did, I would have packed the carbs and nitrates for her myself. Who are they to judge that what I packed was inadequate? So much so that it was returned to me? ARE YOU KIDDING ME?! A week has passed and my blood is starting to boil again now as I write about it.

What if my daughter had dietary restrictions? What if she couldn’t have eaten that sandwich because she was gluten intolerant, or vegetarian, or what if I didn’t have $3 to pay them back? Ok, that’s being a bit petty, but anyone who knows me knows that I am petty AF. On a more serious note, what message did that send to my daughter? She already thinks that she is better than me. I am trying hard to find a balance between encouraging her to be involved in and having some control over her choices, but also just doing what is imposed on her when it’s necessary, because, well, authority. The lunch monitor’s judgment undid that. The message is, if you don’t like your lunch, don’t worry… choose whatever else you like better and we’ll make mommy pay for it. Fort. Très fort.

I was going to send in a letter the next day with the $3 that I now owed, but it wouldn’t have been a pretty one. I decided to let me blood cool enough to compose something without profanities, but then too many days passed and I decided to let it go. Every day I pack her lunch, though, I am reminded that it will be judged. And my daughter will be judged, but ultimately, I am the one who will be judged, because that’s what people do – judge mothers and their ability to raise their offspring based on one isolated incident.

Oh, talking about judging other mothers, I posted about this on a mommy group. I felt like I needed some validation since wasn’t getting any from my mother or my best friend who answered me, “ya, you should have packed her some sopressata or capicollo!” Most of the online mommies were on my side, but one mother actually said that it would have been a better idea to pack a pogo. A pogo. I totally judged her.