I am Carmela's Mom

Some Autism Awareness for Autism Awareness Month

I wish you could see my face right now. There’s a lost, stoic glare I do everything in my power to avoid wearing. I don’t love the “oh my god, how do you do it all” thing, but I have to be honest: outside of it simply being my nature, the last three years have been about survival.

We tried for over a year to conceive Carmela, including a miscarriage that is far more common than anyone talks about. I grieved it on a Friday, Saturday, and Sunday, and kept moving on Monday, ultimately choosing to trust my body for doing exactly what it was supposed to do by processing an unviable pregnancy. I told myself: my body is going to give me a healthy baby.

A car salesman of an IVF doctor told me I couldn’t get pregnant on my own, and after almost a year of my life being consumed by fertility thoughts and forced, mechanical sex with my beautiful husband, I needed a mental break before entering the IVF journey. And then a miracle happened. We made love without the intent to conceive, after the first time I made Davide’s mother’s pomodoro recipe, in a moment of pure bliss and exhaustion and connection, without a single thought about ovulation or temperatures. We made Carmela. The bliss was unmatched. It had finally happened.

We found out she was a girl, immediately knew she would be named after her Nonna Carmela in heaven, and entered one of the most beautiful phases of our relationship. I love being pregnant, especially as Davide’s wife. But I could not connect with Carmela. I don’t know how to describe it, and it was something I mostly kept to myself, shamefully. I mentioned it to Davide a couple of times and he wasn’t dismissive, but it wasn’t something he particularly wanted to hear, just as much as it wasn’t something I wanted to admit. She felt far away from me. Even now, typing this, there are tears on my face. Shame isn’t quite the right word and I honestly don’t know what is. But it was a feeling that stood in stark contrast to my lifelong, core need for human connection. That connection is a pillar of my existence, and here in the moment I had dreamed of my entire life, it was just out of my reach.

I spent the entire pregnancy avoiding everything I was told could cause developmental issues. Only organic food. No toxic hair products. No nail polish. Organic sheets. I wasn’t obsessive about it because I didn’t want the anxiety to cause its own damage, but it was a constant and deliberate presence. I must have a healthy child.

Before she arrived, Davide and I had talked through everything. I mean everything. We were the kind of people who were going to be good at this, not because we were naive, but because we were intentional. We discussed who would get up at 3 a.m. We talked about how to stay partners, not just parents. We had worked through the things that make couples snap at each other and grow resentful in the dark. We were aligned. We were ready.

When she arrived, we were on another level of joy and pride. She came with thick brown hair and little bows. She was a doll. We had no issues with the late nights. We enjoyed every second of it. We brought her everywhere. She was blissed out. We were blissed out. It was a really beautiful beginning.

Carmela was an easy baby. Happy, present, social. She made eye contact. She laughed. She said words. What I started to notice was more physical. At six months she couldn’t hold her own bottle, and I could see that other kids were stronger than her. She couldn’t hold herself up on a slide. She wasn’t as physical as the babies around her. But she seemed so on track in every other way that I filed it away without fully filing it away, if you know what I mean.

Carmela’s first birthday. I hadn’t shown her face at this point, but the online bullying and conspiracies made it seem like I was hiding something, so this was the first photo I posed of her.

The real start of the panic started around a year, and was full swing by 18 months. That’s the milestone that matters: pulling to stand, walking. It’s also when children qualify for government support through programs like the Regional Center, because if you’re not walking by 18 months, it’s considered significant enough to warrant intervention and Carmela wasn’t walking, and she wasn’t even pulling to stand. I was trying to stay calm, telling myself what everyone tells you: "Crawling for a long time is great for their development!" We were trying everything while pretending we weren't worried. My friends stayed positive, but it was becoming obvious to all of us that there was a bit of a delay. What I didn't realize then was that I was entering my first experience of a lifetime of her being different. The stares. My awkward, fumbling excuses. The way I had to decompress after every social situation, quietly processing what had just happened while acting like nothing had. It was just the beginning.

This trip to Italy fell over her 2nd birthday. Explaining to Davide’s family that she wasn’t walking yet was heavy. They were nothing but lovely, trying to help as much as they could. They made appointments with doctors while we were there - we knew they wouldn’t tell us anything we didn’t know, but it made his family, and her God Father in particular, feel like they were helping as much as they could. It was beautiful.

We found a new pediatrician, a warm and careful woman who also happens to have a neurodivergent child of her own. She sat with Carmela for 45 minutes and then looked at me and said, “Your daughter hasn't made eye contact with me this entire time. She’s not physically where she needs to be, I think it’s just safer for us to be proactive”. She urged us to start the Regional Center process immediately.

So we started the process, which is long and bureaucratic and requires a patience I had to build on the spot. And while we waited, I found Debbie Bohn. A physical therapist on the other side of town, recommended by a friend, who turned out to be exactly who Carmela needed. I drove to her multiple times a week. It looks six months, but she eventually began to walk.

I know there will be vaccine questions, so just so we are clear, I don’t believe vaccines cause autism. I vaccinate my kids, but now with a delayed schedule. I’m vaccinated. But when our first pediatrician, who I absolutely hated and will not waste another word on, loaded Carmela up with too many vaccines at once, something shifted. Her body is so sensitive. She threw up for three days. It was like a dark cloud moved into her, into her little body, and I watched it happen. I did not cause her autism, but I could clearly see it was much harder on her than your average child right away.

Around the same time, I was going deep into research, and it became clear that what Carmela was experiencing, that no one really had the balls to say frankly, is that at some point you have to come to terms with the fact that that the brain controls the body, and if those two things aren’t communicating properly, you’re not just dealing with a physical delay. You’re dealing with something neurological. I fought hard to get an appointment with a neurologist at Children’s in Santa Monica. He ran a genetic test. The results came back quickly: Carmela had the SCN2A mutation, which causes autism, hypotonia, and a range of other conditions.

For 10 weeks, when I was 7 and 8 moths pregnant, I was privately commuting everyday to UCLA for an intensive Autism program - we still weren’t really sharing what was going on. We had to wake up at 5:30 and drive up to two hours each way. It was exhausting, but mostly emotionally draining. The breakdowns, crash outs and overall desperation I experienced with my fellow parents in those hallways I’ll carry with me forever.

I was processing all of this privately. The appointments, the Regional Center paperwork, the neurologist, the physical therapy runs across town. I was carrying all of it while also trying to show up to dinner parties and answer the question, “How’s being a mom?” I would break into this strange, nervous mumble about how she was doing great but there are delays and there is this mutation, and we weren’t really sure what it all meant. I was a mess. I just didn’t have the language for it yet.

Davide was heartbroken in a different way. All he ever wanted was a little girl, his mother’s namesake. Initially, he kept coming back to: there’s nothing wrong with her, she’s perfect. And she is. But I had to take him to a park one day and show him all that she physically could not do. We broke down. I explained that the that the earlier we intervened, the better her chances would be. I told him I needed to run with this, and he said okay. He was a genuinely supportive partner through all of it. We were both working a lot. There was a lot happening. But emotionally, I could handle it better than him, but mostly I needed to. I’ve never seen a father love a daughter like he loves her.

While all of this was happening privately, I discovered an online forum where a group of women had been dissecting my life and my daughter’s in detail. They had a nickname for her. Not her name. The letter C. They were screenshotting her crawling in the background of my Instagram stories and using those screenshots to call me a monster. Too selfish to notice. Unfit to have her. Meanwhile I was driving all over Los Angeles fighting to get her seen.

What made it genuinely one of the most traumatic experiences of my life was realizing that some of those women were the same people leaving sweet comments on my posts and calling themselves my friends. I know who some of them are. I think about it. But I’m not willing to put that energy into the world, not for their sake, but for the people who actually show up for me. So I’m putting it here instead, where it belongs: in the truth of what I was living through when those words were written about me. Shame on these women. I pray their children are never bullied the way they so freely bully me. Monsters.

We got her diagnosis at two. The doctor gave it us within an hour of meeting her. Just like that - it’s clear your daughter has autism. We knew it, and we knew this was coming, but now it was official. We got into the car with her and both of us just wailed in agony. A few minutes later Carmela started wailing. She knew, as she always does. An hour later she threw up. My darling girl, so far away, yet so deeply connected. In that moment realized how critical it is for me to control my emotions and thoughts around her. I must keep her safe, and protect her from my own feelings, no matter how valid they are.

It’s been almost three years since her diagnosis, and those three years have been a blur of appointments, arrangements, getting into pre-school, having to switch pre-school because her diagnosis wasn’t welcome, a variety daily therapies, and an endless search for every specialist, body worker, intuitive, every doctor, a 10 week autism program at UCLA, every TikTok post that might give me one more answer, one more tool, one more path forward. I’ve gotten very good at getting lost in the doing. The more I push forward, the more appointments she has, the more treatments we’re trying, the more I feel like we’re on a path that will help her. That’s what keeps me sane. That’s what keeps me moving.

I want to address something directly. There are people who believe autism shouldn’t be fixed, that these children are born exactly as they should be. I agree with that. I am not trying to change my daughter’s frequency or dull her magic. Her brain should be studied for its beauty. But my daughter cannot tell me she needs to go to the bathroom. Cannot tell me she’s hungry, thirsty, or in pain. She has never said my name. She doesn’t answer to her own name. If something hurts, she cannot tell me. I’ve never known something so well while not knowing anything about someone at all. She lives in a world where she cannot communicate what she needs, and I can see in her eyes, in the exhaustion and frustration that live there, that her body is not functioning the way it should. That shows up as aggression, regression, sleep disruption, brain fog. That is not joy. That is suffering. I’m not trying to fix who she is. I’m trying to make her life functional. I’m trying to give her the tools to eventually communicate with the world around her, because I am not going to be here forever, and she deserves to exist in this life without me having to translate and protect every moment of it for her.

The moment that pace slows down, I start to future trip. And that’s the one thing I refuse to do. I don’t do it about work. I don’t do it about anything. I try every day to be a non-anxious person, to stay inside what I can actually control. But this is where that gets tested. Being such a doer and having a child who makes the doing feel impossible has been one of the greatest lessons of my life. It’s a strange thing to sit with, because I am genuinely a happy and grateful person. I mean that. I work closely with children in hospitals who are fighting every single day to stay alive. I am aware, constantly aware, of how lucky I am. I’m crying as I write this because so many parents are living through unsurvivable things, and I have a healthy, beautiful child right in front of me. But many things can be true at once, and it is hard that she’s almost five and has never said “mommy.” She has no sense of danger. If I let go of her hand she’ll run into traffic. She’ll put a knife in her mouth. She’ll swallow rocks. She cannot stop. Every single day of my life I am ON. Carlo follows me, stays out of traffic, answers when I call him, has his small moments of responsibility. Carmela is lightyears from that. And then there’s the feeling of your child following you, one I have yearned for my whole like - that CONNECTION, the invisible bond, the trust. It hit me when we started preschool, seeing all the little kids follow their parents into the school, or walk beside them to the car, joyfully describing their day. Carmela could never, she would try to take off the second I let go. She has this internal, unexplainable desire to run away all.the.time.

I dread the weekends. Davide works six days, sometimes seven. And taking both of them somewhere is an undertaking. I see other families on hikes, on adventures, doing the ordinary things I can’t safely do alone with both of them. It breaks me constantly. I feel like I’m failing them both, even though I know I’m not. It just feels that way all the time. Saturday’s have become this depressing reflection of our limitations. When Carlo gets older he’ll be able to help me. And I cannot believe I’m saying this, but I’m considering one of those kid leash things. ugh. When we do meet up with my loving and deeply caring friends, they are always on the lookout for me and my kids. They know they have to help, and are happy to do so. Every single time we all hang out, every single one of them is also ON - making sure Carmela is safe, I’m ok, and can try to enjoy myself. They will never know how much this means to me.

The juxtaposition of Carmela and Carlo is something I don’t have a single word for. I don’t want to put a label on what it is to parent one child who is neurotypical and one who is neurodivergent, because no word comes close to holding that experience. What I will say, because it’s true and because I think other parents living this would recognize it instantly, is that there are moments where I’m almost angry at Carlo for everything he can do. Not at him. Never at him. But at the distance between what comes easily for one and what costs everything for the other. He loves her. He pines for her. He washes her hair, knocks her over with a hug, gives her unprompted kisses. Carlo is in awe of her existence. He knows she’s magic. Right now she tolerates him, mostly pushes him away. I know that, like everything else, will change with time. But having a son with so much physical force, constantly giving so much affection, while having a daughter who can’t hug, who only just now will give me a kiss at the right moment, it’s just….an experience. Both equally wonderful. When Carmela locks eyes with you, you feel as if you’re the only person in the world.

The reality of my life as her mother is something I’ve been sitting here trying to label, and I can’t. It’s every possible feeling at once. Because every day we’re together we sing and dance and do our thing, and then we enter the real world and it’s “why won’t she talk,” or she’s having a meltdown because she’s pooped her pants, or I’m screaming her name at the pool while another parent jumps in to pull her out. Our private world and the real world are two completely different places, and I live in both of them simultaneously, every single day.

And that is where the mourning comes in. Every parent has to release some version of the life they imagined, but for me it’s been everything. Ballet. Cooking together. Painting. Movies. Playing games. Talking to each other. Every dream I had for us, and for her, turned to dust and blew away. I’ve had to grieve it all, quietly, without a funeral.

What sits alongside that grief is this entirely other experience: living with a magical creature who exists on a frequency I would honestly rather be on. I mean that in the most literal way possible. All of these therapies and treatments, as necessary as they are, sometimes feel like I’m trying to turn an angel into a human. She is one of the most magnificent creatures I have ever known, happy and glorious and completely her own. But the progress from last year to now has been extremely minimal. The work of reaching her, of gently pulling her into a world that was not built for the way her mind moves, is slow. These five years have felt like ten.

I’m extremely lucky to have a sister and friends who allow her to ride on the Sundays. Carmela lacks vestibular input and always feels as if she’s falling - imagine not feeling like your core could hold you up. This is the only activity she’s willing to do, which is a miracle. It forces her to use her core and makes her just so incredibly happy. We look forward to it all week.

April is autism awareness month, and I thought I’d finally sit down and tell you what it’s really been like. Which is absolutely everything.

I am gutted. I am over the moon just being around her. I panic thinking about something happening to me, about no one knowing how to navigate her providers and her therapies, about no one knowing exactly how to make her breakfast the way she likes it. How is she going to go to school when she’s older? What happens when someone makes fun of her? We already notice the moments when she notices that other kids can use the swing on their own, when she still needs to sit on her therapist’s lap. She has started to understand that she’s different. And when you watch her eyes process that feeling, it is like your own heart being slowly pulled out of your chest and torn into a million pieces.

I am living a beautiful life full of genuine joy, and then I’ll be alone in my car and out of nowhere I will just scream. Hysterically. For every feeling I have ever felt. The gratitude and the fear and the comments and the uncomfortable interactions and the advocating and the stares and the quiet awareness that I am the mom of the autistic girl wherever we go. The emails I send to entire classrooms explaining that she won’t hurt anyone, and asking parents to please talk to their children about how to be around her. The fear of her being taken advantage of, physically, emotionally, mentally, for the rest of her life.

The constant chorus of "she's going to be great, it will level out, she'll be fine" held up against the possible reality that this is her. That this will always be her. That I may never have a real conversation with my daughter, and that I am learning, slowly and imperfectly, to hold that truth without falling apart. Some days I can. Some days I can't. What I know is that a life without expressive words is not a life without meaning, and hers is proof of that every single day. But the fear lives right alongside the acceptance, and it always will. On the day I die, my final thoughts will be pure panic about what happens to her when I'm gone.

I want to acknowledge that this post is full of privilege. And endless children don’t have access to the care my children do. Please know I am aware of that on a daily basis. I will also never be able to fully express my gratitude for navigating this in 2026. My heart breaks for the families and mothers who came before me with nothing, no resources, no language, no community. Whose children were condemned, hidden, and kept from the world as though their difference was something to be ashamed of. For the neurodivergent people whose own families never believed their brains and hearts worked, who spent entire lifetimes dismissed, misunderstood, and exiled from the very places that should have held them closest. We are not there yet, but we are somewhere. These angels are being seen, advocated for, shared, and finally brought into the conversation where they have always belonged.

This is autism awareness month. This is what I want you to be aware of.

My angel.