I hope you can see my face right now. There’s a lost, stoic gaze that I try my best not to wear. I don’t like the “Oh my god, how do we do everything?” story, but to be honest, the last three years have been about survival.
My husband David and I tried to conceive for over a year. I overcame my miscarriage and subsequent grief and kept moving. Our fertility doctors told us we would never be able to conceive naturally, but just before we started IVF, a miracle happened.
When Carmela was born, we felt another level of joy. She was a happy and sociable baby. She looked into his eyes and smiled. But I started noticing physical delays. At 6 months old, she could no longer hold the bottle on her own and it turned out that other babies were stronger. She couldn’t support herself on the slide. But she seemed to be doing well in other ways, so I filed away that thought.
The real panic started about a year ago and was in full swing by 18 months. That’s the age at which children who haven’t achieved certain milestones, such as walking or standing, become eligible for government intervention programs. Carmella didn’t even try to stand up.
I calmed down and told myself what others were saying. “Crawling for long periods of time is good for development!” But it was becoming clear that something was wrong. What I didn’t realize was that this was the first time in my life that she was different. line of sight. My awkward, fumbling excuse. After every social situation, I had to decompress while processing what had just happened, acting as if nothing had happened.
We found a new pediatrician. She was a warm and careful woman who happened to have a neurodivergent child. She sat with Carmela for 45 minutes and then looked at me and said, “Your daughter hasn’t looked at me in a long time. She’s not physically where she needs to be.” She urged us to start an intervention right away at the regional center.
We began a long and bureaucratic process that required patience developed on the ground. While I was waiting, I found a physical therapist in town. It turns out he was exactly what Carmela needed. It took another six months, but eventually I was able to walk again. I also immersed myself in research and finally understood a fact that frankly no one told me. That means the brain controls the body, and when those two things aren’t communicating properly, you’re not only dealing with physical delays, but neurological delays as well. I took Carmela to a neurologist who performed genetic testing. The results were immediate. Carmella had the SCN2A variant, which causes autism, hypotonia, and a variety of other symptoms.
I was dealing with appointments, paperwork, physical therapy, everything in private while attending dinner parties and trying to answer the question, “What’s it like being a mother?” I started mumbling weirdly and nervously about how she was doing well, but there was a delay and there was this mutation and I didn’t really know what it meant. I was a mess. I still couldn’t say a word.
David was grieved in another way. At first, he repeated: There’s nothing wrong with her. she is perfect. And she was. But one day at the park I pointed out to him all the things she physically couldn’t do. We are broken. I explained that the sooner we intervene, the better her condition will be.
We received Carmela’s official diagnosis at 2 o’clock. your daughter has autism. After the doctor’s appointment, we got in the car and my husband and I just cried. After a few minutes, Carmela started crying–which she knew she always did. My beloved, even though we are far apart, we are deeply connected. In that moment, I realized how important it was for me to control my emotions and feelings around her, no matter how justified they were.
It’s been about 3 years since her diagnosis. A whirlwind schedule, daily therapy, kindergarten admissions, the need to change kindergartens, and a never-ending search for experts, programs, and TikTok posts that might give us yet another answer. I’ve gotten better at immersing myself in things. I feel like the more I move forward, the more she has planned and the more we are able to help her. It’s what keeps me sane.
There are people who believe that autism cannot be fixed. That these children will be born the way they are meant to be. I agree with that too. I am not trying to change my daughter’s frequency or dull her magic. The beauty of her brain should be studied. But she can’t say she wants to go to the bathroom. She can’t tell me she’s hungry, thirsty, or in pain. She had a hard time communicating her needs and I could see the fatigue and frustration in her eyes. It manifests as aggression, regression, sleep disturbances, and brain fog. It’s not a joy. It’s suffering. I’m not trying to “correct” her. I’m trying to give her the tools to navigate the world, because I won’t be with her forever. And she deserves to exist in this life without me having to translate or navigate every moment for her.
I know how lucky I am. I am crying as I write this because so many parents live through conditions that they would not survive and I have a healthy, beautiful child in front of me. But more than one thing can be true at the same time, and it’s hard when you’re almost 5 years old and have never said “mommy.” There is no sense of danger, and if you let go, you will end up running into traffic. She’ll put a knife in her mouth. She would swallow stones. Her brother Carlo follows me and answers when I call him. Carmela is light years away from that. Every day of my life, I’m on.
The juxtaposition between Carmela and Carlo is indescribable. There is no way to explain the experience of raising a neurotypical child and a neurodivergent child. But I will say that there are moments when I almost feel angry at everything Carlo can do. Not against him, never. in But there is a distance between what comes easy for him and what makes Carmela sacrifice everything. he loves her he longs for her. He washes her hair, hugs her and puts her down. She tolerates him, but almost pushes him away. When Carmella locks eyes with you, you feel like you’re the only one in the world. But having such a loving son and a daughter who can’t be hugged is just an experience.
Our private world and the real world are two different places, and I live in both at the same time. At home, she sings and dances and does whatever she wants, but when she gets into the real world, she’s like, “Why isn’t she talking?” Or sending an email to the entire classroom explaining that she won’t hurt anyone, or me screaming her name at the pool while another parent jumps in and tries to pull her out.
There is a sense of condolence. Every parent has to let go of some version of the life they envisioned for themselves, but for me, it sometimes feels like that’s all there is to it. It’s ballet. Cook together. Painting. movie. We are talking to each other. I had to grieve quietly, without a funeral, for all the dreams I had for us and for her. Carmela is one of the most amazing creatures I have ever known. But the work of reaching out to her, of gently drawing her into a world not made for her, is slow.
I’m very happy just being by her side. My bones were broken. Even though I live a life full of genuine joy, when I’m alone in my car I end up screaming out of nowhere. There’s a constant chorus of people saying, “She’s going to be great. She’s going to be okay.” And this could be, and always will be, her. I might not be able to have a real conversation with my daughter. I am slowly, albeit imperfectly, learning to hold onto the truth without falling apart. There are days when you can do it. There are days when I can’t do it. Fear exists alongside acceptance, and always will. On the day I die, my last thoughts are: What will happen to her when I’m gone?
This month is Autism Awareness Month. This is something you should definitely know.
Pier Baroncini I am the creative director of LPA and podcast co-host everything is the best. you can follow her substackIf you don’t mind.
PS Disability has taught me about parenting and what it feels like to have autism.
(Photo credit: Pia Baroncini. This post was first published Pier Baroncini Newsletter;This essay has been lengthened/condensed and published here with permission from Pia. )
Source: Cup of Jo – cupofjo.com
