The Silent Weight: Growing Up as the Sibling of a Child with Special Needs

By: An Older Sibling Who Understands

 

Growing up, you could say the dynamic at home was a bit different. And I guess, in many ways, it was. My younger sister was born with both physical and mental disabilities, she has severe epilepsy, cerebral palsy from a lack of oxygen in the womb, severe scoliosis that affects her body and mobility in a variety of ways, and a long list of other learning and developmental challenges; challenges that altered the shape and dynamic of our family from the very beginning. I don’t remember a time when things were easy, or even just normal by most standards. But what I remember most is how quickly I learned to swallow my own needs.

 

Being the older sibling in this situation is complicated. You love fiercely, protect instinctively, and grow up fast. You become an extra set of hands before you're even out of primary school. You learn to explain things to strangers with grace, or shame, or defensiveness - depending on the day; but sometimes a hard stare that screams, “Stop staring!! This is normal! Please just go about your day and don’t make us feel any different than we already do!!” is enough. You decode enough medical terms to practically earn yourself a medical degree (I’m obviously joking, but that’s honestly what it feels like sometimes). You stay quiet during your parents’ exhausted silences because you know they’ve already used up all their emotional energy.

 

But what no one talks about is the quiet toll it takes on you.

 

For years, I felt guilty for feeling anything that wasn’t love or patience. I love my sister deeply, but that didn’t stop me from feeling frustrated, embarrassed, lonely, or invisible. Those feelings sat in the pit of my stomach, festering in the silence. Because how could I complain, when my sibling struggled just to speak, or walk, or be accepted? How could I be sad, when my parents were clearly carrying the world?

 

So I coped by becoming small. I drowned myself in hobbies, did well in school, stayed out of trouble, and didn’t ask for much. I became “the easy child.” But that came at a price.

 

As I got older, I slowly started disconnecting from my own emotional world; not out of rebellion or selfishness, but for my survival. I was tired of waiting to get my loved ones’ attention, waiting for them to ask if I was ok…so I just switched off. I never resented my parents for this though. I often felt bad because I knew that it wasn’t necessarily on purpose. Dr. Jonice Webb said this perfectly in her book called ‘Running on Empty’ when she said, “When a child is ignored, they don’t stop loving their parent. They stop loving themselves.”

 

I’m sure most, if not all, siblings or children of people with special needs have experienced parentification in some way, shape or form. Parentification can be defined as when youth are forced to assume developmentally inappropriate parent-or adult-like roles and responsibilities.

This is exactly what it felt like. I wasn’t just the sibling, but I was the helper, the distractor, the peacemaker, and so many more. And I didn’t even have a choice.

 

“What is not expressed is often stored, and what is stored tends to surface later – as symptoms, struggles, or silence.” Dr. Gabor Maté, The Myth of Normal

That silence showed up everywhere. I didn’t know how to talk about what I needed, or even that I could. I never wanted to be a burden.

 

I would put my all into everything, with the hopes of being the center of attention for something that I was passionate about, but because I had been doing that my whole life, in contrast to my sister, it had become expected of me. The only real acknowledgement I got was for being “so mature” or “so helpful.” I started to believe that my only worth came from being low-maintenance. That my role was to never be a burden. But I still continued to try.

 

“Being chronically ‘the strong one’ is often a trauma response, not a personality trait.” – Nedra Glover Tawwab

That line lives in my head now. I see it in so many older siblings: this quiet, heavy strength and maturity that looks like resilience but often comes from unspoken pain.

 

The part I think many families forget, not necessarily out of cruelty, but out of being overwhelmed, is when all attention and resources are focused on one child, the others might not seem to be hurting. But we are. Quietly, and deeply. Waiting patiently for our turn.

 

I’m still learning how to make space for myself. Still learning to speak up when I feel overwhelmed. But I’m also proud — proud of the compassion I’ve developed, of the emotional intelligence I carry, of the emotional bond I have with my sibling that defies words.

 

Though I would often, more so now than ever, mourn the life I never had, or the relationship with my sister that I never had. I would watch things on TV or hear stories from people, and see all these people with their amazing relationships with their siblings; seeing sisters talking about boy drama, getting ready together, having fun, and even fighting…all things I have never and unfortunately will never experience with my sister. I want to be able to watch her walk down the aisle, help her get ready for prom, cry as she graduates, shout at her for sneaking out to see a boy, and do so much more, and it’s hard to come to terms with the fact that I won’t. But that’s okay 🙂

 

If you’re an older sibling in a similar situation, know this: your feelings are valid. Your experience matters. You are allowed to say that it was hard. It is hard.

 

Loving someone with special needs doesn’t cancel out the pain that comes with the sacrifices. They can both exist. They often do.

 

We grow in the shadows, but we deserve the light too.

 

I hope you have the most amazing rest of your day, and remember that you are not alone <3

 

Xoxo, Indy <3