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I wish you could see my face right now. There\u2019s a lost, stoic stare I do everything in my power to avoid wearing. I don\u2019t love the \u201cOh my god, how do you do it all\u201d thing, but I have to be honest: The last three years have been about survival.<\/p>\n
My husband Davide and I tried for more than a year to conceive. I weathered a miscarriage, and the grief that followed, then kept moving. A fertility doctor told us we wouldn\u2019t be able to get pregnant on our own, but then, just before beginning IVF, the miracle happened. <\/p>\n
When Carmela was born, we were on another level of joy. She was a happy, social baby. She made eye contact and laughed. But I started noticing some physical delays. At six months, she couldn\u2019t hold her own bottle, and I could see that other babies were stronger. She couldn\u2019t hold herself up on a slide. But she seemed on track in every other way, so I filed the thought away.<\/p>\n
The real panic began around one year, and was in full swing by 18 months. That\u2019s the age when children who aren\u2019t meeting certain milestones \u2014 like walking or standing \u2014 qualify for government intervention programs. Carmela wasn\u2019t even pulling to stand.<\/p>\n
I tried to stay calm, telling myself what everyone else was saying: \u201cCrawling for a long time is great for development!\u201d But it was becoming obvious that something was off. What I didn\u2019t realize was that this was the first in a lifetime of experiences of her being different. The stares. My awkward, fumbling excuses. The way I had to decompress after every social situation, processing what had just happened, while acting like nothing had.<\/p>\n
We found a new pediatrician \u2014 a warm, careful woman who also happened to have a neurodivergent child. She sat with Carmela for 45 minutes, then looked at me and said, \u201cYour daughter hasn\u2019t made eye contact with me this entire time. She\u2019s not physically where she needs to be.\u201d She urged us to start immediate intervention at our regional center.<\/p>\n
We began the long, bureaucratic process, which required a patience I had to build on the spot. While waiting, I found a physical therapist in town, who turned out to be exactly what Carmela needed. It took six more months, but she eventually learned to walk. I also dove into research and finally understood the thing no one, frankly, had the guts to tell me: The brain controls the body, and if those two things aren\u2019t communicating properly, you\u2019re not just dealing with physical delays, but neurological ones. I took Carmela to a neurologist, who ran genetic tests. The result came back quickly: Carmela had the SCN2A variant, which causes autism, hypotonia, and a range of other conditions.<\/p>\n
I processed all of this privately \u2014 the appointments, the paperwork, the physical therapy runs across town \u2014 all the while trying to show up at dinner parties, and answer the question: \u201cHow\u2019s being a mom?\u201d I would break into a strange, nervous mumble about how she was doing great but there were delays and there was this mutation, and we weren\u2019t really sure what it all meant. I was a mess. I didn\u2019t have the language for anything yet.<\/p>\n
Davide was heartbroken in a different way. At first, he kept repeating: There\u2019s nothing wrong with her. She\u2019s perfect<\/em>. And she was. But at the park one day, I pointed out to him all the things she couldn\u2019t physically do. We broke down. I explained that the earlier we intervened, the better off she\u2019d be.<\/p>\n We got Carmela\u2019s official diagnosis at two. Your daughter has autism<\/em>. After the doctor\u2019s appointment, we got into our car, and my husband and I just wailed. Minutes later, Carmela started wailing \u2014 she knew, as she always does. My darling girl, so far away, yet deeply connected. In that moment, I realized how critical it was for me to control my emotions and feelings around her, no matter how valid they were.<\/p>\n It\u2019s been almost three years since her diagnosis. A blur of appointments, daily therapies, getting into preschool, needing to switch preschools, and the endless search for specialists, programs, and TikTok posts that might give me one more answer. I\u2019ve gotten good at getting lost in the doing. The more I push forward, the more appointments she has, the more I feel like we\u2019re laying a path to help her. That\u2019s what keeps me sane.<\/p>\n There are people who believe autism shouldn\u2019t be fixed; that these children are born exactly as they should be. I agree with that \u2014 I\u2019m not trying to change my daughter\u2019s frequency or dull her magic. Her brain should be studied for its beauty. But she cannot tell me she needs to go to the bathroom. She can\u2019t tell me she\u2019s hungry, thirsty, or in pain. She can\u2019t communicate her needs, and I can see the exhaustion and frustration in her eyes. It comes out as aggression, regression, sleep disruption, and brain fog. That is not joy. That is suffering. I\u2019m not trying to \u2018fix\u2019 her. I\u2019m trying to give her tools to navigate the world, because I won\u2019t be with her forever. And she deserves to exist in this life without me having to translate and navigate every moment for her.<\/p>\n I\u2019m aware of how lucky I am. I\u2019m 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 multiple things can be true at once, and it is hard that she\u2019s almost five and has never said \u201cMommy.\u201d She has no sense of danger and will run into traffic if I let go of her hand. She\u2019ll put a knife in her mouth; she\u2019ll swallow rocks. Her younger brother, Carlo, will follow me and answer when I call him. Carmela is lightyears from that. Every single day of my life, I am ON.<\/p>\n The juxtaposition of Carmela and Carlo is something I don\u2019t have words for. There\u2019s no way to describe the experience of parenting one neurotypical child and one neurodivergent one. But I will say there are moments where I almost feel angry about everything Carlo can do. Not at him, never at<\/em> him, but at the distance between what comes so easily to him and costs Carmela everything. He loves her. He pines for her. He washes her hair, knocks her over with hugs. She tolerates him \u2014 mostly pushes him away. When Carmela locks eyes with you, you feel as if you\u2019re the only person in the world. But having a son who is so affectionate and a daughter who can\u2019t hug is just\u2026an experience.<\/p>\n Our private world and the real world are two different places, and I live in both of them simultaneously. At home, we sing and dance and do our thing, and then we enter the real world and it\u2019s \u201cwhy won\u2019t she talk,\u201d or I\u2019m sending emails to entire classrooms explaining that she won\u2019t hurt anyone, or I\u2019m screaming her name at the pool while another parent jumps in to pull her out.<\/p>\n That\u2019s where the mourning comes in. Every parent has to release some version of the life they imagined, but, for me, it sometimes feels like everything: Ballet. Cooking together. Painting. Movies. Talking to each other. Every dream I had for us, and for her,\u00a0I\u2019ve had to grieve, quietly, without a funeral. Carmela is one of the most magnificent creatures I have ever known. But the work of reaching her, of gently pulling her into a world not built for her, is slow.<\/p>\n I am over the moon just being around her. I am gutted. I am living a life full of genuine joy, and then I\u2019ll be alone in my car and, out of nowhere, I\u2019ll scream. There\u2019s a constant chorus of people saying, \u201cShe\u2019s going to be great. It\u2019ll be fine.\u201d And there\u2019s the possibility that this is her, and always will be. That I may never have a real conversation with my daughter. I am learning, slowly and imperfectly, to hold that truth without falling apart. Some days I can. Some days I can\u2019t. The fear lives alongside the acceptance, and always will. On the day I die, my final thought will be: What happens to her when I\u2019m gone?<\/em><\/p>\n This is autism awareness month. This is what I want you to be aware of.<\/p>\n Pia Baroncini<\/a> is the creative director of LPA<\/a> and co-host of the podcast Everything is the Best<\/a>. You can follow her on Substack<\/a>, if you\u2019d like. <\/em><\/p>\n P.S. What disability taught me about parenting<\/a>, and what it feels like to have autism<\/a>.<\/p>\n (Photos courtesy of Pia Baroncini. This post first appeared on Pia Baroncini\u2019s newsletter<\/a>; this essay, which has been edited\/condensed for length, is being published here with Pia\u2019s permission.)<\/p>\n![\"\"](\"https:\/\/cupofjo.com\/wp-content\/uploads\/2026\/04\/essay-mother-daughter-autism.jpg\")
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