November 15, 2012

Down with Normal

normal - conforming to the standard or the common type; usual; regular; natural.

In other words; boring.

Two separate events conspired together to get me to dust off the keyboard and write a post. My life is never without some sort of external drama and this week did not disappoint. I work as a job coach for individuals with disabilities and I was meeting with one of the individuals I work with, describing a possible position to him;

Me - "I think you will like it, there are other people with disabilities there."
Him - "You mean they aren't normal like you and me?"
Me(Laughing) - "They have challenges, like we all do."
Him - "Well what kind of disability do I have?"
Me - "You think differently, but everyone does."

I wanted to tread lightly, as I could not tell if he was joking and if he wasn't, I certainly did not want to insult him. When I got home, I thought about it more deeply. Why should I assume that just because me and the other service providers in this person's life found him to have a disability that he himself would consider himself disabled? Why should I assume that he would enjoy working with other disabled individuals?

Later that day, a Facebook Fr-enemy (its a long story, but believe me its better she is my friend than not!) posted something about how she is always down to support kids with disabilities that can't do normal things like other kids can.  That comment really burned me up. What's normal anyway? Who is she to assume what kids with disabilities can or can't do? The comment was meant to be condescending. I'll pass on any support that comes from a place of pity.

It amazed me that in a few short hours, I could go from the in crowd to an outcast. How odd that I laughed at being included as normal with a person with a perceived disability, but was angered by the pity of a person who sees my children as abnormal because she perceives them with a disability. Context is everything. My kids are extensions of me and if they aren't normal, neither am I.

But, I already knew that.

I have never been normal, I spent most of my early life a member of a cult like church with weird rules and beliefs. At 17, I stopped going to church and decided that I would be normal from that point on. That only lasted a few years.  At age 23, my first born was officially diagnosed with Autism. I was initiated into the new world of disability. Yes, in the world of disability, up is down and left is right. You can expect to be asked all sorts interesting questions about your 3 year old child, like "does he start fires and torture animals?" Nothing against any of you parents who do have 3 year old's who do that, but you must admit, that's not normal. What kind of world was I getting into, where that's an appropriate question?

Without skipping too far down memory lane, I can easily say that the normal path has never been my path. It will  never be the path of my children either. Even if they wanted to be, others will not allow them to be. Just like I didn't allow the individual I work with to be normal.

I think normal is one of those elusive concepts that we all try to sell, but none of us really buys.

Normal is a program, an antiquated mode of social engineering, designed to keep us all striving for something that doesn't really exist.

So what should I do? Form my very own Misfit's group and take on Jem's Holograms?

I think striving for normal does a disservice to our families. Normal is not the same as consistency and structure, which are things that can benefit kids on the autism spectrum. As parents we must be open to creating our own family goals and levels of success. For example one of my goals is to be able to leave my kids home alone at some point. Obviously not an issue for other families with teenagers, but a challenge for mine.

Also appreciate the things so called normal families  have to put up with that yours don't. I am proud to say that I don't have to put up with any sassy back talk from my kids, shopping for gifts and birthday presents is relatively easy and peer pressure is not an issue in our home. We also have a lot laughs and celebrations for things that other people take for granted. I stopped dwelling on all the normal things my kids can't do a long time ago. I accept what they can do and keep it moving.

I learned a very valuable lesson; perception is everything and reality is extremely personal. Sometimes it is necessary to blur the line in between in order to get a true picture of who you really are and what you really believe.