What you learn when you have a special needs sibling

When I was eleven years old – the day I came home from my Washington DC safety patrol trip – my mom informed me and my younger brother that she was pregnant. To say we were shocked would be an understatement, but the shock was overwhelmed by excitement.

Fast forward to nine months later, and my sister, Jordan, is born at a healthy nine pounds, two ounces on August 6th, 2007. Fast forward a few months later and we start to notice that she isn’t hitting the normal milestones: she doesn’t roll over when she should, she doesn’t sit up or start to crawl. It didn’t take us long to realize something was different, possibly wrong.

We did test after test with no specific results, but came down to a broad conclusion: Jordan is mentally handicapped and falls somewhere on the autistic spectrum. Today, at nine years old, she has the mental capacity of a one and a half year old, maybe two year old. She is non-verbal and not potty trained. She is also one of the happiest people I know.

When you have a special needs sibling, your entire world is turned upside down. Your normal is no longer your normal. You don’t determine what day it is based off the date, but by which therapist shows up at the house. The bathroom is no longer just a bathroom, but a playroom where flushing the toilet and watching the water swirl down the bowl is hours of entertainment. ‘The Wheels on the Bus’ has been sung so many times that you’re fairly certain you sing it in your sleep.

You also find that you change as a person, largely for the better. I find that I’m more conscious of what I say – the words moron and retard have vanished from my vocabulary – and I’m more accepting of those with disabilities, both physical and mental. I’ve also learned that the small stuff we sweat about in life really doesn’t matter, not one bit. Jordan doesn’t care how other people perceive her, or if her hair looks OK. She couldn’t care less if it’s too hot out or her shoes don’t match her outfit. As long as she has her family, some almond milk, and endless runs of Blue’s Clues she is happy as a clam.

Happiness is something you can control, is something you allow yourself to feel, and we as humans have this incredible, self destructive tendency to derail our happiness. We focus on the small stuff. We focus on trends, on trying to get others to like us, on that bitch who we’ve hated since the second grade. In the large scheme of things, none of that is important. Family is important. Doing what you enjoy is important. Accepting people for who they are and not judging them on ability or if they’re “normal” is important.

Having a special needs sibling is not something that deserves pity or condolences. Yes, I wish that Jordan was a normally functioning child who could talk to me and have the future that others are afforded, but I love her for who she is in every conceivable way. I hope that I can be half as happy in my life as she is in hers. If I manage that, no matter what the world throws at me, I know I’ll be OK.