What does it mean to be a special needs sibling?

Wow. Can you ask a harder question than that? Yet someone did ask me once and I thought it was a question worth answering. Growing up with a special needs sibling means so much and is different for every person. But here are a few things we may all have in common.

Growing up with a special need sibling means…

  • You look beyond the surface and see people for who they truly are.
  • Constantly explaining or excusing your siblings behavior–to friends, extended family, random strangers in the grocery store…
  • Lots of laughter–usually at things that would horrify or scandalize the rest of the world. (There are things that happen in our house that I will never post on this blog. If you have a special need sibling, I am sure you know what I mean!)
  • Probably never knowing what ‘normal’ means.
  • Understanding weird medical or legal terms and rattling them off to your best friend when you’re twelve years old.
  • Knowing pure desperation, frustration, and fear. Yet also understanding unconditional love and childlike wonder at the smallest things.
  • Recognizing that you have something unique to offer to the world.
  • Always being ‘mature’ or ‘the good child.’
  • Trying to balance the knowledge that your special sibling is an incredibly important person with great needs with the fact that you also have incredible worth and value.
  • Wondering what ‘might have been.’
  • Learning that a person’s worth can never be determined at face value.
  • Patience and kindness has been granted to you in ways beyond comprehension. 
  • Putting aside your own plans for another person’s well-being. (For example, interrupting this blog post to ensure Alyssa didn’t kill herself climbing shelves!)
  • Protecting and championing the rights, feelings, and worth of someone other than yourself.

Growing up with a special needs sibling has shaped every aspect of your life. Without your special sibling, you are a completely different person. Can you even wrap your mind around that? I certainly cannot.

And so when all is said and done, growing up with a special sibling means you can truly say that you wouldn’t change a thing.

What does growing up or living with a sibling with special needs mean to you?