Who I Am when I’m not ridiculous

There’s a part of my life that I haven’t really blogged about ever.  There’s no real reason for that – but it’s just something that’s become so ingrained in Who I Am that I forget that it’s not how other people are. 
 
My brother Jamie has autism.  And while the statistics are now that 1 in 110 kids is diagnosed with autism, Jamie is 22.  He was diagnosed as being on the spectrum before anyone honestly knew what we were dealing with.  I’m not sure what life would be like for us now if any of the education surrounding autism was around when he was younger.  But he’s my brother.  I love him and he’s one of the best people that I know.
 
While life with Jamie is fabulous and wonderful, it isn’t all candy and unicorn farts.  He’s frustrating.  He has a hard time focusing, needs a lot of attention when he’s home and can get on your nerves.  And while I’d like to ride my high horse into I’m Better Than You Town, I can’t.  because sometimes, I get mad at him.  Sometimes I raise my voice and shout at him.  Sometimes we’re like a normal brother and sister.  Sometimes I can’t stand him being around.  When I get into a fight with someone and just want to be alone, he’s following me.  He’s trailing me, asking me what’s wrong, telling me not to be upset.
 
And you know what doesn’t help when you’re upset?  Someone who is telling you not to be upset.
 
So I can act all high and mighty about Jamie, but it’s not like that.  While I love him to death and honestly would do anything for him, sometimes I do wish that he was just…you know…normal. 
 
At the same time, I can’t imagine my life if Jamie wasn’t the way he is.  I can’t imagine having a Christmas where we didn’t talk about Santa because Santa still comes to our house.  I don’t know what it would be like to have a typical 22 year old brother – someone I could go out with, share drinks with, enjoy movies with.  That isn’t something I can wrap my brain around because it’s never been something I’ve considered. 
 
Now that I have a new job and I’ve been dating 21, there are so many people in my life that don’t know about Jamie.  And while he’s not a constant topic of discussion, I’ve had to talk about him.  I’ve been thinking of the ways to explain to someone that might not have any idea what Jamie is all about.  Over the years, it’s become easier because autism is so much more in the public eye than it was before.  But Jamie isn’t Rain Man.  Jamie isn’t profoundly autistic either.  So my explanation has to go further than “My brother has autism”.  I encourage people to ask questions because it’s very easy to want to know if Jamie has a magical counting power (he doesn’t), if he can speak (he’ll talk your ear off) and what he’s capable of (making me laugh by telling my mom that I’m being a dick). 

21 has been the most curious about Jamie and with a good reason.  21 has been carefully picking his words when he talks about Jamie in an attempt not to offend me.  The thing is, I’d rather him say what he thinks and be blantant about it than dance around the subject.  I know that he doesn’t know anything about autism.  I’m aware.  But he tries so hard not to step on my toes, not to make me feel like Jamie is someone to be ashamed of. 

For a long while I was ashamed of Jamie because I didn’t know any better.  I was 12 years old.  I was trying to fit in.  He didn’t help me fit into the mold of the community we lived in.  Jamie was not a part of the community.  So I hid him.  I didn’t invite my friends over to my house.  I never had sleepovers.  I didn’t say a lot about my family because I couldn’t find the words that I needed.  I thankfully found a friend or two that were understanding.  They were people that I could invite over that wouldn’t judge Jamie for the fact that sometimes, he doesn’t wear pants (sorry guys).  From there, I learned.  I found out what I needed to say and how to (for lack of a better phrase) prepare people for Jamie.  I learned that some people cannot be accepting.  I learned that some people are bound to be jerks.  And I learned that if someone doesn’t like Jamie or Jamie doesn’t like that someone?  They don’t need to be in my life. 
 
My mom sent me this email a while ago that was about siblings of people with autism.  It’s something that I’ve held on to because I didn’t know what I wanted to do with it.  Posting it here is as good as anything, I suppose.  The email was about the strengths that siblings of people with autism have.
 
Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.
 
Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.
 
Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas some of this presents difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.
 
Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.
 
Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.

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