Tuesday, March 29, 2011

World Autism Awareness Day...

is April 2nd if you didn't know.  I wouldn't know if I didn't have an Autistic son myself, but it was this month last year when our little world changed.  Last year in April is when Sam quit talking.  It's also when he quit looking at people and started the moaning and quit playing with toys and and and...  I could go on forever. 

It all finally hit me seeing him around other people at Dylan's birthday party.  He wasn't just shy or being stubborn; something was tragically wrong with him.  I wish it didn't happen.  I wish I knew why it happened.  I wish I could freeze time to have the other version of my Sammy back.  It still feels like I have had a child taken away from me, like I've lost him.  I'm being honest, but don't get me wrong; I still love him to pieces and believe in him.  I don't want pity and I hope everyone else can and will take Sam for what he is, what he can aspire to be, and see how sweet and awesome he really is.

I swear this boy is like the real-life Caillou, he'll never grow a full head of hair. Ha!

I try not to be down about it.  I don't let his Autism consume my every living moment and thought.  I think more to making all of our lives as normal and happy as possible instead.  I'm not in denial by no means.  Therapies and diets won't completely fix my Sam, but slowly will alleviate some of his issues.  He's not going to be "normal" and I'm getting to the point where I'm okay with that, because, well, I have to be.  I celebrate all the little things he has progressed to do.  Life is going to continue to go on.  I choose to be as positive and optimistic as possible.

I miss this. Holding him on my lap, no squirming, totally content.
Now I'm not Mary Frickin' Sunshine, but I refuse to live my life as a Debbie Downer.  I still have my days and moments.  I don't enjoy scrapbooking anymore for instance.  It outright sucks to document the times when everything was fine and knowing it will never be like that anymore.  It also sucks trying to scrapbook the present, because it just reminds me and starts those negative thoughts.  There's only so much I can do and I'm trying my best everyday to better Sam.  Dwelling over every new study and news article isn't going to change anything for us, except make me more depressed about what I can't change.  Even if Sam gets worse with age, every little thing is gonna be alright, because when you think about it, it really does get to the point where you can accept that it's alright.

It's my mantra.

Now onto actual awareness... I don't tell every person on the street that Sam is Autistic.  Sure, workers in the church nursery know, close friends, and of course my ,family; but I don't feel the need to tell every single person.  I'm not embarrassed.  If he has a meltdown around someone that doesn't know, then oh well.  He starts saying LA LA LA over and over again non-stop, again, oh well.  I do a little trick my Grandma taught me: Just smile and nod - smile and nod.  I don't care what people think of me.  No, really, I don't.  I don't feel it's my job to run around educating everyone about Autism either.  But for the sake of this blog post about awareness; there are some things I wish people did know, things I wish were common knowledge to everyone, like:
  • There's a quote somewhere out there that basically says this:  "You've seen one person with Autism, then you've seen ONE person with Autism."  This is true!  That's why it's called the Autism Spectrum.  Every person with Autism has different traits and behaviors.  Some are worse than others. How you have seen one Autistic person behave in a Lifetime movie, is not how ALL Autistic people are like.
  • Speaking of movies, Autism does not mean my child will grow up to be like the Rain Man 
    • It also doesn't mean my child will be some prodigy like you have seen on The Discovery Channel that can figure out any math equation, memorize every baseball stat, or can paint an entire city view with one glance.  There's a reason these people are documented on these type shows, because they are unique situations.
    I asked Sam to smile for the camera and this is the huge, cheese grin he gave me!
    • Autistic people are capable of having feelings and most do express and show feelings of love.  Sammy can give hugs, smile, and laugh.  Just because an Autistic person isn't looking at you or saying anything, doesn't mean they aren't listening and comprehending.  Lots of Autistic adults go off to college, get married, and raise children of their own just fine.  Maybe not ALL Autistic children will grow up able to be a member of productive society, but it has been done.  Sam is not brain-dead.  With the early intervention we are receiving, I have high hopes for my son.
    • Many Autistic people do understand the word "no."  Sam is diagnosed in the moderate to severe range of Autism and understands this.  He may not behave like I would always wish, but he is capable at times when he wants.
    • I have heard many times said to me, "Oh he's Autistic, he has no fear."  This is not true.  For example:  Sam is a climber, but he does understand he can fall and hurt himself.  If he didn't, he wouldn't teeter on the edge.  He would fall down all the time, every time.  He's a boy!  That's how boys are!  If he hurts his hand on something, he doesn't immediately go and do it again. And sometimes, he does, but he's just "testing the waters" so to say.  He tries to figure out how much he can do before he does hurt himself, but that's a part of learning and his personality. 
    Sammy & Cliff - my handsome men
      • All Autistic people are NOT alike, in Sam's case he is generally good-natured and not violent.  Just because he's Autistic, it does not mean he is a complete menace unable to be disciplined.  If he is misbehaving and pushing a kid, I want to know so I can try my best to correct this in him.  I don't use his Autistic behaviors as an excuse because I think he's some "special angel" which grants him some pass allowing him to get away with anything.  I know he can be naughty just like any of other kiddo.  Maybe he can't help a lot of things, but it doesn't excuse violence towards others.  But there's also a line of what some think is misbehaving where I see as just fine, like with him opening and closing a cabinet door for an hour.  It's fun to him.  He knows exactly where to stop the door so he won't squish his fingers too.  Yeah, I'm aware it's annoying, but he's not hurting anyone by doing it. 
      • Just because I have one Autistic child does not mean all my children will develop Autism.  I think I read that my new baby only has like a 2 - 8% chance of being Autistic.  Yes, I worry that it could happen and I will love him just the same as I do with Sam should that occur, but Brett's not totally destined to be Autistic.
          • But the number one thing that I wish people knew is that Autism DOES exist.  I didn't invent it to have an excuse why Sam doesn't talk or acts the way he does.  I don't want to hear things like, "Well Einstein didn't talk til he was 5" or whatever.  Or "Sam's just taking his time."  Or "If you would refuse him things until you forced him, he would do it."  I'm not being lazy and I spend a ton of time with Sammy.  Don't tell me that you think he seems fine after spending some time with him.  I'm not exaggerating for kicks and attention.  Ask yourself, why would I want Autism for my child?  Why would I take him to these doctors and spend all this money and time?  I would LOVE for him to be like other typical children and our ultimate goal is for him to resemble something close to that as possible. 

          I sometimes consider making pamphlets to hand to the people unaware of what Autism really is with all these points above, but I've come to realize people don't care unless it affects their life.  It really is easier and allows me to live happier to continue to just smile and nod, smile and nod.