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Monday, May 13, 2013

Autism Awareness

Okay, so I realize that April (Autism Awareness Month) has passed, but at our house it's Autism Awareness 24/7/365.  Besides, I typed up a pretty decent autism awareness post back in April that accidentally got deleted and could not be recovered.  *sadness*  And then April got crazy busy.  So I'm going to try to remember what I had written earlier and see if I can say what I need to.

I know some parents of children with autism get sick of autism awareness, but I don't have a problem with it.  You would think that everybody knows what autism is by now, but they DON'T.  (Shocking, I know.  Apparently some people are not familiar with Google.  Or the Today Show.)  Also, just because people know what autism is, that doesn't mean they KNOW.  Even I catch myself from time to time expecting someone with autism to be a certain way without really getting to know them.  So I think awareness helps.  Maybe we should have an "autism acceptance" month too, so that after people figure out what autism is, they will stop staring at us in the grocery store.  :)

So here it is.  Just a few things that I, as a parent to a very cool kiddo with autism, want you to know:

1.  If you know one person with autism, you know one person with autism.  This means that they are all different.  *Duh* 

2.  Not all autistic people are savants.  (Think Rain Man, if you are having trouble with this.)  I get people all the time asking me what Korban's "thing" is.  He doesn't have one.  He isn't able to tell you what day of the week your great-great-grandmother was born on if you tell him her birthday.  He can't walk into a room and tell you exactly how many floor tiles there are with one glance.  True savants are actually pretty rare.  And I sure don't have a problem with people asking me about this, I'm just saying that when you meet Korban don't expect him to perform some amazing trick for you because he won't. 

3.  For the love of all that is holy, it is "autistic" not "artistic."  This has bothered me since before I had my very own autistic child.  True story:  In my life B.C. (Before Children) I was a social worker for the state department of human services.  Part of my job was working with children in foster care.  There was a child from another county placed in a foster home in the county that I worked in, and I was going to start visiting him and making sure he was doing well.  I always wanted to know about the kids that I worked with, so before I went to meet this child for the first time I read part of his case file.  His social worker mentioned that he was "artistic."  I thought "Cool, he likes to draw and stuff!" So I went on over to the school to meet him and well, let's just say he thought I was pretty weird, what with me asking him all about what kind of art he liked best and all.  I dug a little deeper in his case file and found out that he was actually diagnosed with Asperger's.  Lots of education for me.  He was a great kid, and one of my favorites that I ever worked with.  I still think about him and wonder how he's doing now.  But anyway--say it right.  I'm pretty literal myself and when you say a child is "artistic" I imagine them with a beret and paintbrush in their hand. 

4.  Don't be so quick to judge people.  If you see a child acting out in public, don't automatically assume they are just a brat or that their parents have zero parenting skills.  That may be true, but it's more likely that the family just has more going on than you can see on the surface.  And no matter what the issue is, staring, poking fun, and making rude comments just won't help.  I try to be as open as I can about our autism journey--partly because it's good to vent, and I hope it helps to educate people, but mostly because even if I wasn't open about it, I think it would still be fairly obvious that we were dealing with some things!  I'd much rather just be honest and try to explain what is going on and how we are trying to deal with it.  So that way if you see me in a store and Korban screams or lays down in the floor and refuses to get up or something like that you'd be more likely to smile and have a positive attitude than judge us in a harsh manner.  Remember, having a child with autism doesn't automatically qualify you for an airplane that drops groceries and toilet paper on your front porch, so alas, we must brave Wal-Mart too. 

5.  One of my favorite quotes is "Autism means different, not less."  Korban might not be "typical" but he's still a person. He has a personality and likes and dislikes just like everyone else.  He likes to go places and have fun, loves sports, would live outside if we let him, and his favorite flavor of ice cream is mint chocolate chip.  He's a person, same as you and me.  A much-loved person designed by God, with a plan and a purpose for his life. 

6.  Get to know people that are different from you.  When we did Special Olympics last week, I noticed they had high school students helping out.  I wish I had gotten the opportunity to do something like that when I was a teenager.  All people have worth.  And to me, people with special needs (and their families) are used to working twice as hard at things that other people take for granted.  We've met so many beautiful people since Korban was born.  People that are strong and kind and determined to make the world a better place.  Children that face so much adversity and yet keep a big smile on their face.  People that I wouldn't have had in my life if my son had been "typical."  Autism isn't the road that I would've picked for him if I could've chosen, but man, I've met some great people on this road.  And I will choose to be thankful for that rather than wallow in pity. 

7.  Okay, about the pity...some days it's hard not to wallow, I will admit.  Everyone has down times.  Some days are harder than others.  So if you know someone dealing with autism, and they are having a hard time, try to be encouraging but please don't try to guilt them out of their slump.  Perspective is good, and believe me, we get it every time we go in a doctor's office.  I've seen children with many different kinds of disabilities, many that I truly believed were much more severe than Korban.  I've seen parents caring for and loving children that were unable to be mobile, talk to them, or even look at them.  So yes, I know it could be far worse than what we are dealing with.  That being said, if I had a dime for every time I've heard "Well, at least he doesn't have (insert some terrible something that is "worse" than autism here.)  For some reason, after his diagnosis, even when we weren't outwardly distressed about things I heard over and over "At least it isn't a heart defect."  Not sure why that was the going "scary thing" at the time, but it was.  And by all means, anyone dealing with that has my compassion.  But Brad finally said to me "Don't they know that a lot of heart defects can be fixed? We're going to be dealing with autism for the rest of our lives!"  It doesn't do any good to compare.  And again, this is something that I've been guilty of too.  Once I had taken Korban to the ER for an asthma attack, and was giving his rather extensive health history to the nurse.  I remarked "Yeah, he's really been through it," and she told me about her son, who died of an incurable disease at a young age.  And I felt like a horse's rear end.  So I've rambled, but the point is, everyone has their own path to travel and it doesn't do a lot of good to compare. 

8.  So empathy is good but pity, not so much.  Just because things are hard doesn't mean they are always bad.  Things aren't easy at our house but we have a lot of joy.  I wouldn't trade either of my kids for anybody or anything.  They are unique and awesome, and we love them.  One of Korban's friends at his old school has Down Syndrome.  She's precious, and he still talks about her.  I was talking to her father once, and he said people always look at her and say "Oh, how sad," and he says "Why are you sad?  She's not!"  Well said, Daddy. 

I think that's all of my ramblings for one night.  I think this post may have been better the first time I wrote it.  Ha!  But I've slept since then, so I can't remember all of the stuff that I wanted to say or how I wanted to say it.  If you have questions about autism, just ask.  I would much rather face somebody's questions than their judgments.  I've got a cool little man who is autistic but not good at art, and we'd be happy to explain all of that to anybody that wanted to know.  :)

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