I have (not so) recently published a post called Autism Sibling: The Hard Parts. That post talked about what was hard about having an Autism sibling and what kind of struggles it caused for me and my family. This post is going to be different. In fact, it is going to be the complete opposite. Was having two brothers with Autism hard sometimes? Of course it was. Would I be who I am if I didn’t have them? Hell no. I can contribute some of the greatest parts of who I am to the lessons they taught me and experiences I have had with and because of them. I have to admit that writing this one has been a struggle. I want to be able to make you truly understand how great it is but I am not sure how. I want to do this one justice. So I have ultimately decided to focus more on how being an autism sibling has shaped me.In the end this one is going to be a bit of a mismash because it has been started and stopped so many times. So in no particular order (and far from exhaustive) these are some lessons I have learned, some parts of my personality that have been shaped and developed and who knows what else. We shall just go with it.
Patience:
Something you learn as an Autism sibling very quickly is that things won’t always happen the way you want them to or even the way you think they should. Your life can become very hurry up and wait sometimes. “Ok we got to go so hurry and get ready.” Go get your shoes and coat on and stand at the door and… wait. C isn’t ready yet. A is dawdling around somewhere. Wait.
I can sit in a waiting room for a half hour and just sit in my own thoughts and not get antsy. I am a good waiter.
You also learn patience with people. You start to learn that everyone is different and everyone takes their own time to do things. Maybe they need extra time to process. Maybe you will need to stand and just wait out a tantrum. I can wait out a tantrum like no tomorrow at work these days. You want to sit there and pout or throw a fit for 10 minutes or try and power struggle with me? Go right ahead, I will be here waiting. I have waited out worse than you kid.
Sense of Righteousness
My mom has told me many times that I am very righteous. I don’t like when things aren’t fair. I don’t like when people are not treated the way I think they should be treated. Things should just be good dammit. As you may have guessed I am a little overly righteous (annoying) when it comes to issues regarding Autism. Don’t you go toe to toe with me about some of the hot button Autism issues because I will take you down.
Equality
My experiences as an Autism sibling has also taught me the difference of equality vs equity. I am a big believer of people getting what they need and not everyone getting the same. I learned as a kid that A and C got different things than I did, not because they were getting spoiled or getting treated better, but because they were getting what they needed. They needed attention at this time more than me. They needed to go to that program at night because they had a need that was different than mine. Was it easy all the time when they seemingly got to do fun stuff and I didn’t? Of course not. But at the end of the day all my needs and wants were always filled to the best that they could be and I got to do a hell of a lot more than they did.
Compassion
From this whole righteous thing comes this whole compassion thing. I feel like I have a decent ability to understand and empathize with the feelings of others. I went to school for social work and did well at it so at least I hope I do.
Disney
Ie: slight obsession
An appreciation of all things Disney, being able to “speak Disney” and truly believing in magic. In other words I am a grown up child and I like it. I would like to live in Cinderella’s castle at Disney World please.
Flexibility
With great patience comes great flexibility. Things are probably not going to go as planned. I plan, more accurately, I anxiety plan. That's like planning down to the minute of every day. And things very rarely if never go right. Be flexible and don’t freak out. The mantra in my brain. I am still working on this one.
Embarrassment or lack thereof
I remember my mom saying once she was going to embarrass me and I said she probably couldn't if she tried and I meant it. Other people’s actions rarely embarrass me unless what they are doing directly affects me in a negative way or they are doing something very mean or hurtful. People look at me weird when I am in out with my brothers a lot. They would act up in the store sometimes and we would get “the stares”. Look away you nosey bums. This is who they are and who we are, I don't have to feel responsible for how you judge us. With that said I embarrass myself easily. And I get nice and beat red about it too. I literally lay awake sometimes going over such inconsequential things that I did years ago and still feel embarrassed about it to the point that I am cringing. I judge myself much more harshly it seems.
Appreciation
I appreciate every opportunity I have, every privilege I have been given, every ounce of potential that I get to fulfill. I grew up in the same country, same city, same house, same family as two other people and have been handed so much more to me based solely on how I was born or because my mind works and my body works in the way that we believe “it should”. I don't want to waste or take any of that for granted.
Passion, drive and desire to learn
Because of what I have been given I feel that I was also given the gift of a burning drive and passion to do something. What “something” is is always changing. It’s about educating people, or helping people, or just making a difference, no matter how small. I want to be able to change the lives of people who aren’t given all that I have been if I can. My passion lies strongly in the disability field because it is what I know best and what I understand best but it doesn’t mean I know everything (nor that it is where my passions solely lie). With this passion I also always want to learn more, I want to stay on top of changing research about Autism and changes to the field. I want to learn from every individual, every family and anyone I can so I can see what needs to be done.
Family
Family above all is the most important. My family be different, it may even be weird but it is perfect to me.
Independence
You learn in the end to do things on your own. Whether that be going shopping by yourself or it means going to university and staying in residence where you know absolutely no one and you know it's going to be ok. There were times when I could have sat and whined that everyone was too busy for me and no one was helping me and that I couldn't do it (and I did) but my parents taught me that I could. And my family taught me to try. I don’t mind being alone and if something needs to be done and there is no one around that can show me I will figure it out and I will try my darn hardest to do it myself.
Appreciate both silence and noise in very different ways
I couldn't study during school when it was too quiet so the tv was always on even though I was not watching it. But at the end of the day I liked an, still like, to go and have a bath and just sit in the silence. My house was usually loud. C liked his Disney movies turned up loud and going all day. A was always busy. When the house was quiet it felt weird. But at night when everyone was asleep and it was quiet I would just sit and think and I liked that. I live with the husband now and with just the two of us it's pretty quiet. He laughs because I can't sit on my laptop and play a game or surf stupid articles without having the tv on. Sims is too quiet and BuzzFeed articles and quizzes about what Harry Potter character I am based on what I put on my pizza don't usually have background tracks.
Being part of a community
Above all what I think I love the most about being part of this whole crazy family is that I have been allowed access into one of the most amazing communities of people I have ever known. Sitting at the opening ceremonies of Special Olympics this year was one of the most amazing experiences I have ever had. The stadium just had this air of pride and genuine love that I have never felt before anywhere else.The people you get to meet just seem bring so much light and greatness into your life and you wonder how you got to be so lucky that some schmuck like you got to be part of all of this. The parents, the families, the people who work in the field and of course above all the individuals who are labeled as different just come together in this web of support and understanding and there is a bond that we all share that so many people can't understand. I wish you all could feel what I am trying to say. You can get a taste by getting involved with organizations in your community or with charities or just by talking to people who are different than you. Believe me, it is so worth it.
In the end this blog started as this sappy novel and then became a very bullet point list and then ended up as a mixture of both. I feel like I have only scratched the surface as to how being an autism sibling has made me who I am and what I love about having had the privilege of being given this life. I hope I was able to convey at least a little part of it all and that maybe I have given you a different perspective about what being someone like me, or my sister, or
countless other siblings is like. If all I have done is make you smile a little then I feel like I have done my job.
Thank you all for reading this, from one twisted mind to another.