8 Things I Wish Parents Understood About Being a Special Needs Sibling


My older sister has significant physical differences, and while that’s always been my reality, it’s still incredibly tough. Often times, since I’m the able-bodied child, many assume my life doesn’t also carry unique challenges that need acknowledgement. When I connect with other siblings, we typically agree there are some serious misconceptions about our lives. I believe the disabled community needs a bigger discussion on how to best address the needs of siblings, too. By sharing my perspective, I aim to help parents and caregivers better understand the sibling experience.

1. We have our own special needs.

While we understand our siblings need extra help, we have our own special needs, too. We need attention and concern for our own life challenges, even when it pales in comparison to our siblings. We need compassion when we’re feeling left out, isolated and helpless by what’s going on with our sibling. We need adults to advocate for us and understand the struggles that come from our sibling experience. Simply put, we need to be listened to.

2. We’re not mini-adults.

While often mature for our age, we’re also kids and teenagers with normal emotions and feelings. Age-appropriate responsibilities are essential. Overly demanding expectations make us feel overwhelmed and stressed. Just like our siblings, we want to be treated like an average kid.

3. Our perspective matters.

Special needs siblings can relate to their brothers and sisters in ways parents and other family cannot. Since we’re constantly by our sibling’s side, we often know them best. When making decisions or handling tough moments, include us. We’re a knowledgeable but underused resource, and we have our sibling’s best interest at heart.

4. Being strong is tough.

Just like our siblings, we’re forced to be strong in hard situations. Like our siblings, we get frustrated and have our bad days. Don’t mistake it for a lack of love or empathy.

5. We see our siblings as people first.

Some find it disturbing when they see us bickering and arguing with our siblings. Don’t they know their sibling is disabled? Why are they being so hard on them? The thing is, we truly see our siblings as siblings before we see a disabled person. Siblings upset, bother and antagonize each other. They fight about it. They still care about each other. Instead of disapproval, be thrilled we treat each other like average siblings — for better or for worse.

6. Being a sibling is a part of our identity.

Having a sibling with special needs is a huge part of our lives. We’ve been along for the ride on our sibling’s journey, and it has had a profound impact. For some, that means incredible tolerance and patience with behavioral issues. For others, it’s unconditional acceptance and inclusivity with communication difficulties.  For many of us, it’s a solid sense of empathy. We carry the lessons of our childhoods for the rest of our lives.

7. We care about what our siblings are going through.

Our hearts hurt every time we see our siblings in pain. It pains us to see our siblings left out and excluded. We’ve seen firsthand the injustices that confront people with disabilities, and it enrages us. We are passionate about changing how the world sees our siblings. Their fight is our fight. We care more than you’ll ever know.

8. We love our siblings fiercely.

No matter the difficulty, no matter the stress, no matter the distance, we love our siblings. We all express our love differently, but there is no doubt our bond is immensely special. We want them to lead the most fulfilling life possible. We believe in them, we dream with them, we hope for them. We’ve been their companions, their protectors and their fighters from day one. We will always be there.

Siena sitting next to her mother and older sister

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