Personal essay by Jaclyn Greenberg

**(CNN) — **Hearing President Donald Trump link Tylenol use during pregnancy to the development of autism in children, without evidence, takes me back many years to when my son was born.

My son has multiple disabilities because I caught a virus when I was pregnant. I’ve struggled with guilt for something I could not control since the day I received his disability diagnosis 13 years ago. I spent years trying to rewind time in my mind to figure out when I got sick, but I didn’t get much relief from that exercise.

Mothers feel responsible for so many things that happen to their children, even things they can’t control, and parents of children with disabilities can feel that sense of responsibility even more. I still struggle with intense feelings at times, so I reached out to experts to better understand how to process these emotions.

Here’s how they recommend handling those intense feelings.

What happens when you get a diagnosis

Medical providers tell pregnant mothers to follow certain guidelines to keep their babies safe. When their child is born sick or receives a medical diagnosis, moms may look back on the time when they were pregnant to understand why.

That self-reflection can happen because of an internal quest for understanding, because something happened, like the virus I caught, or because someone blames acetaminophen, sold under the brand name Tylenol, for autism.

“Parents of kids with disabilities are looking for answers,” said Kara Kushnir, founder and clinical director at A Work of Heart Counseling in Bergen County, New Jersey. She also has a sibling who has profound disabilities.

“They want to understand their kid, and they want to understand how to help them,” Kushnir told me. “If they’re thinking about (having more) children, they want to prevent further hardship for their family. And there’s a real validity to that experience. Life is harder for parents of kids with disabilities.”

Asked for comment, Kenvue Brands, the maker of Tylenol, referred to the company’s public statement, which read in part: “We believe independent, sound science clearly shows that taking acetaminophen does not cause autism. We strongly disagree with allegations that it does and are deeply concerned about the health risks and confusion this poses for expecting mothers and parents.”

Looking for a reason

This isn’t the first time mothers have been blamed for autism, explained Kushnir. In the 1950s, the refrigerator theory implied that mothers of kids with autism were emotionally cold and distant. It’s an assumption that most professionals eventually discredited. Regardless of the reason, mothers of kids with disabilities can feel like they live in a world that other people can’t understand.

“If it feels like it has anything to do with us, it can further compound the shame or the disconnection we might experience from the world, society and our communities, because our children have more significant needs than other kids,” Kushnir said.

I know that feeling of disconnect from my own experience. No matter how many times I replayed my pregnancy in my head, I couldn’t turn back time and avoid the virus that caused my son’s disabilities. But parents of kids with disabilities have to eventually accept that we cannot change the past

When those feelings resurface, I try to follow Kushnir’s advice to take a minute to pause and process my feelings since an emotional response could cloud my judgment. What I learned I could do is focus on the present and then do my best to make plans. For example, I learn about programs that will support my whole family and think about where my son will thrive as an adult. As hard as it can be to corral my thoughts, refocusing my energy helps everyone in my family.

Refocusing my energy on reality

We only have so much energy to take care of our families, work and be socially engaged ourselves, explained Dr. Sharon Artz, a clinical psychologist in Metuchen, New Jersey, who works with parents of kids with disabilities.

Deciding how we use our energy is key. “Do we want to spend all of our time just regretting and feeling bad, or do we consciously choose to invest ourselves in the present, connect and enjoy our children, help to plan for the future, and really engage?” Artz said. “It’s a decision about what is the best use of my energy. I can’t do everything, so what should I use it for?”

Artz works with her clients to sort out which thoughts are helpful and which aren’t. “When something’s good for them, it tends to be good for their families too,” she said.

At the end of the day, I have found that being a mom who feels good can be there for everyone in the family. “When the mom’s needs are met, it’s much easier to do everything else.”

Finding connections in the community

From the day my son was born, my experience was different from my two other children. Starting with understanding his diagnosis to working with doctors and physical and occupational therapists to learning how to support him, I was busy figuring out how to care for my son and readjusting my own expectations of what motherhood would look like. This different process made it hard to connect with friends and family and keep them updated.

“When you have a child that is different from the norm and has more needs, you already feel like you’re doing it wrong because you’re doing it differently,” Kushnir said. “People don’t know what to make of you or how to interact with you.”

That divide can be extremely isolating. For example, some days, I spend the morning talking to mothers at my son’s school about doctor appointments and therapies, and then spend the afternoon talking to mothers at my daughter’s school about town sports and Girl Scouts.

“One of the challenges I find is that women struggle to find out how to stay related to their communities, to stay engaged and to have friends when they have one foot in each world,” Artz said.

Creating connections with other parents in the disability community can help bridge that divide. “Even if they’re talking about different disabilities between the children, they still understand the experience of being a parent in a much more challenging circumstance,” she added.

Focusing on the support

Understanding the reasons why and how disability happens is important — that can lead to future children not having those disabilities (as is the case with the virus that caused my son’s disabilities). With a diagnosis such as autism, people want to know if it’s more prevalent now or if we just have better diagnostic tools these days, explained Kushnir.

But continuing the conversation about supporting families who have a child with a disability is just as important, she noted.

In 2024, the US Surgeon General issued an advisory to mothers and caregivers that they should focus on mental health because they’re under increased stress — but how to do that without institutional support?

“The talk is all about cause and cure and fix and treat, and there aren’t a lot of conversations around support, resources, programs and financial backing,” Kushnir said. “Those are things that can really make a difference in the lives of … all parents of kids with disabilities.”

Thirteen years after my son was born, I still struggle with feelings of disconnect from the rest of the world. But most of my energy is spent getting our family through the day and fighting for all of my kids to have equal access to life’s experiences. My other two children recognized inaccessibility and lack of inclusion from an early age, and we work as a family to make sure we get out in the world and have fun together.

Coping with feelings of guilt

• Before emotionally reacting to something that feels like an accusation or blame, take a minute to breathe.
• Decide how you want to use your energy. You can’t change the past, and you can only control the decisions you make today and in the future.
• Meet other parents and guardians, through your child’s school or therapy sessions or online in communities for parents of kids with disabilities, who can relate and be supportive.
• Find and use resources that support families of kids with disabilities, such as local nonprofit organizations.

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