1. There will be people that hate you for having your sibling out in public. I sat down to write this article after reading Chelsea Fagan’s If You Won’t Control Your Screaming Child, Don’t Take It Out Into Society and immediately got my feathers ruffled.
I understand the importance of teaching appropriate behavior to children, and think that it’s a good thing. However, after saying that she has experience babysitting children with Special Needs, she says “it is your responsibility to them to either get your child into some kind of functional order or vacate the premises as quickly as possible” Sorry, what? My options are to forcibly command my sister (who has no concept of following commands, by the way) to act functionally (that should be a good show) or leave the establishment ASAP (likely to cause a riot). Uh… yeah, no.
You try separating my sister from her beloved macaroni, and see how she takes it. Oh, you didn’t like how she screamed a minute ago? Sorry that she burnt her tongue on her food and the only way she knows to communicate is to make noise. Wait, was that her glass that she knocked over on accident, and then cried about? I’m sorry, I didn’t realize what was happening at my table was your business. Oh! Yikes, I’m sorry that her pulling my hair offended you, even though the only noise that was made was me saying “Oh shit,” under my breath and my mom saying, “Let go, honey,” to my sister.
Long story short, unless you’re going to pay my family to leave, we’re going to sit and enjoy our meal just like everyone else. My sister is a human being; I’m not going to relegate her to house arrest because you don’t want her out in public. *Those of you that wait on tables like the ones my family sit at, I know your pain, and I know it can be hard. But I also know that my family and I leave additional tips for our waiters when my sister acts out; I know not every family does that, but don’t lump us into the category of shitty restaurant goers. We’re a family and want to occasionally eat a nice meal out, just like everyone else.
2. Embarrassment is not an option. Do you think it’s hard to have a sibling who wears a diaper even though she’s 21? Hell yes it is. What about that time that she almost ate dirt? Or the time that she threw literally every dish on the table at Applebees clear across the room? Yeah, I didn’t enjoy that. No one did. But if I get embarrassed every time she does something that is “acting out,” I’m going to spend more time being embarrassed that I am breathing. Long-term, it’s just not worth it to get embarrassed by those things. Worry about your zipper being down or something else that you can control easily.
3. You will realize how incredible it is to be independent. I thank God and the higher powers every day that I’m a strong, independent woman. My sister and her classmates will never live alone, much less go to college, have a successful career, and get married. They won’t have the opportunity to travel on adventures. They won’t have the opportunity to excel in the modern economy, nor will they even have the opportunity to fail. Think about that. Their disabilities are prohibiting them from even failing. They rely on the love and care of others for support, and while we do too, we need to be thankful that we have our independence as well.
4. You’ll question the importance of everything. Why bother? Who cares about grades? Who decides what direction you’ll go in? Does it really matter than your sister or brother see you graduation if they’re miserable the whole time? What’s more important: your sibling’s happiness, or yours? Do your parents love Sibling X more, because they spend more time on Sibling X than on you?
5. You’ll feel like a selfish cow. Remember that time that you dragged your sibling to your soccer games, and art shows, and dance recitals? It’s bad enough to do that to a sibling that at least understands it’s important to you. Try explaining to non-verbal, low-functioning autistic sibling that you want them to “just behave” for “one hour” during “the best day ever.” Prepare yourself for the hollering now. And the more you think about it, the more you’ll realize that the only reason your sibling is coming along is because you’re being selfish. Don’t expect them to be happy about being forced to do something. (I realize that everyone is different and some with disabilities enjoy recitals, etc. Take what I’m saying with a grain of salt, and apply it to your own life.)
6. Someone will make a smartass comment about being “normal.” Excuse me? I’m sorry. Did you just ask me if I would prefer to have a “normal sister” instead of the one I have now? Please GTFO and never speak to me again. Seriously. She’s the only sister I have; she IS normal to me. Don’t act like you know what normal is, ya damn ignorant.
7. Superhero status. You’re literally going to be your sibling’s superhero. I socked a boy in the face when I was a little kid for calling my sister a retard, and it was one of the most eye-opening experiences in my life. My sister can’t stand up for herself – tons of kids and adults with disabilities can’t stand up for themselves – but you can bet your sweet ass that there’s going to have someone there who is going to.
8. You’ll try to make people understand. There’s going to come a time where you legitimately want someone to understand how you feel, at whatever the cost. You’re going to try to tell your best friends who don’t know your sibling about how great he or she is, and how awful they can be, and you’re going to do a terrible job, because let’s face it… No one can sum up a sibling – regardless of their abilities – in just one simple explanation. It takes way more than that.
9. Someone is going to show up with all the answers. This is my biggest pet peeve. People quote books (“Oh, I read in this book that people with Autism…”) and magazines (“Well, that famous lady said…”) and movies (“If Forrest Gump can do it, so can your sister!”). Please stop. You’re making yourself look like an idiot, and quite frankly, my family and I don’t give a damn about your opinion unless a) you have a sibling or child with special needs, or b) there’s an MD that comes after your name.
Don’t try to tell me that you know about the drawbacks about having a sister with Down’s Syndrome because you have a cousin with Down’s Syndrome. In the words of everyone’s favorite badass GoT Wildling, YOU KNOW NOTHING (insert name of idiot here). You know nothing. Unless you have physically lived for an extended period of time (like, 10 years or more) with someone who has Special Needs, you know nothing about what my family endures on a daily basis, even when my sister is not home.
10. You’ll learn a lot about yourself. You’ll develop tolerance and compassion you didn’t even realize that you were capable of. You’ll find yourself smiling when you see another kid or adult with Special Needs out and about. You’ll want to introduce yourself to every person aiding someone with Special Needs, and give them a smile to help them get through their stressful day.
11. You’ll discover that a sibling with Special Needs is still a sibling. At the end of the day, my sister is still my sister. A sibling with Special Needs is no different than a sibling without Special Needs… They’re just a little bit different. When I was younger, I was told that my sister was Special Needs because she was a special gift to my family. And she is. There’s no stronger bond than that between my brother, sister and I, and I dare you to come between us.