The Emotional Weight of Caregiving

When I learned that the child I had carried and loved from the womb was autistic, I felt lost.

It was not because of the word autism or because of how society described it. I felt lost because I did not know how to support my son correctly. By “correctly,” I mean supporting him in a way that would allow him not only to grow, but to flourish.

I was 25 years old, unmarried, working in retail, and already watching my relationship with my son’s father fall apart. In other words, I had no idea what I was doing. On top of everything else, I would soon learn—when my son was two years old—that he also had epilepsy. I had to learn how to navigate that diagnosis largely on my own.

Yes, I had the support of my parents, and I remain grateful for it. But their support was not the same as having an equally present and equally responsible parenting partner.

Before anyone makes assumptions about who I was, I want to make something clear: I was—and still am—a highly educated woman. My parents did not want me to have a child outside of marriage, but life did not follow the plan they had imagined for me. Regardless of how it happened, I became someone’s mother, and that child needed me.

When Life Changed My Direction

Before my son’s diagnoses and health concerns, I was studying for the LSAT. Growing up, I wanted to become a criminal prosecutor.

I can honestly say that I never imagined a future in which I would become a special education teacher. But life has a way of showing you where you belong—not necessarily where you once thought you wanted to be.

When my son’s diagnosis and health scares came, he became my only concern. I wanted to understand what he needed and how I could help him. When he was about two years old, I was given the opportunity to become a substitute paraprofessional. A few months later, I became a full-time paraprofessional.

It was through that work that I truly began to grow alongside my son.

We did not only have to learn what autism was. We had to learn what autism looked and felt like for him. Autism is called a spectrum for a reason. Every autistic person is different, with individual strengths, needs, preferences, and ways of experiencing the world.

Working in special education helped me understand this more deeply. Eventually, it also helped me understand where I belonged.

I wanted to become part of the reason parents and children did not have to hear so many “no’s.” I wanted to give someone else the “yes” that had not always been given to me.

There Was No Easy Road

This may sound like a story that became dark and then suddenly opened onto a shiny road filled with easy days.

That is absolutely not what happened.

My son and I had to learn together. We had to determine what worked best for him, how different therapies worked, which supports were necessary, and what I needed to purchase or create to help him at home.

There were countless questions, decisions, appointments, expenses, and moments when I wondered whether I was doing enough—or doing anything correctly at all.

My son did not begin speaking until he was five years and two months old. Before then, he had received an AAC device with Proloquo2Go after I personally requested a communication evaluation. His AAC device gave him an important way to communicate. Spoken words later became another way for him to express himself.

Of course, his first spoken communication was not a single word. It was a complete sentence:

“I want ice cream.”

I was shocked, but I immediately gave him what he had verbally requested.

When he finished, he said, “I want more.”

His registered behavior technician, who was present when he began speaking, and I simply stared at each other with our mouths open. The only response I could manage was, “Okay,” as I gave him one more scoop.

I am sure the shock was written all over my face. My son looked at me and smiled. He quickly finished that scoop and said, “More.”

This time, I smiled and told him, “I love that you are using your words, but that is enough ice cream for today.”

He smiled, nodded his head, and left the kitchen table.

If you are wondering how I remember every detail, it is because I wrote it down. It was—and still is—an important milestone that I never wanted to forget.

The Words That Shook My World

My son did not speak again for another two weeks or so.

The next time happened while I was putting him to bed. We followed our usual nighttime routine. I kissed his forehead, said, “I love you,” and sat on the beanbag beside his bed, just as I did every night.

I quietly scrolled through my phone while waiting for him to fall into a deep sleep.

Then, unexpectedly, he said, “I love you.”

I looked up so quickly. All I could see were his bright eyes and smiling face.

“I love you too,” I immediately answered.

He smiled, closed his eyes, and snuggled into his blanket. I leaned back into that beanbag chair and silently cried.

I was not crying because I was sad. I cried because so many people had told me that he might never speak. I had even been told that he would never be able to follow more than a one-step direction.

Those are the kinds of statements I cannot stand. They are also why I will continue to advocate as loudly as I can.

No professional can see the entirety of a child’s future. Support should create possibilities—not close the door on them.

At the same time, I want to be clear: my son’s value was never dependent on whether he developed spoken language. He was communicating before he spoke, and his words did not suddenly make him more worthy. What made those moments so emotional was hearing him express something in a new way after we had been told to expect so little from him.

The Days People Did Not Understand

I sat through the meltdowns—and there were many. I navigated refusals, both nonverbal and verbal. I handled the attitude because my son has always had a big personality, and puberty has certainly not made that easier.

I have been present for the good days, the difficult days, and everything in between.

Just as good days are always possible, difficult days and moments will come. When you are living through them, they can feel as though they are going to consume you. But they do not last forever. There is another side to the moment, even when you cannot see it yet.

That does not erase how heavy those days can feel.

There were times when I believed no one understood me or what my life was like. People did not understand why potty training was not completely successful before age three. They did not understand why my son was not speaking at the time, why I could not go out every weekend, why I was sometimes quiet, or why I always looked tired.

I was tired—physically, mentally, and emotionally. I was also tired of people not understanding.

But I understand you.

I understand because I was you, and I am still you. I am simply nearly 12 years into this diagnosis now.

Time does not make every challenge disappear. What time can do is allow your knowledge, confidence, and perspective to grow and shift. You begin to understand your child more clearly. You learn which opinions deserve your attention and which ones do not. You become more willing to ask questions, challenge limitations, and trust what you know.

I am currently trying to survive puberty, which began early and sometimes feels as though it will never end—but I will save that story for another day.

Give Yourself Time and Grace

If you are at the beginning of this journey—or simply moving through a particularly difficult part of it—give yourself time and grace.

Know that it is okay to say out loud that you need help. It is okay to admit that you need a break. You cannot pour from an empty cup.

During an airplane safety demonstration, we are taught to secure our own oxygen masks before helping the people traveling with us. Caregiving works in much the same way. If you never care for yourself, how can you continue caring for and advocating for the person who depends on you?

I know this is a difficult lesson. I did not truly begin to understand it until about two years ago, and I am still putting pieces of myself back together.

Please do not wait as long as I did to begin learning that your needs matter too.

You can love your child completely and still feel exhausted. You can be grateful and still feel overwhelmed. You can be a fierce advocate and still need someone to advocate for you. None of those feelings make you a bad parent or caregiver. They make you human.

You are learning your child, and your child is learning you. Neither of you has to have everything figured out today.

Give yourself time. Give yourself grace. Ask for help. Take the break when you can.

And above all, know that you are not alone.