autism awareness

so. april is autism awareness month. you've probably seen something on my facebook or twitter feed about it. if you don't know what autism is, check this: http://www.autismspeaks.org/what-autism please and learn your one new thing for the day.

so. GREAT. now you know the statistics. you know the diagnosis. you know the jargon. you're well aware of autism. as in: you know it exists. but what does it MEAN? how can you really be AWARE?

i can't speak for every mom with a kid on the spectrum. just like every kid is different, every case of autism/aspergers is different. big shock, i'm sure. there is no one size fits all diagnosis. there is no cure that will "fix" every child.

so let me tell you what it means for us. let me help make you AWARE.

aspergers means that my kid processes things differently. from senses to jokes to experiences. it means he reacts to things differently. he has a harder time knowing when to stop. he has a harder time knowing what's funny and what's across the line. he has a harder time reading the social cues that the rest of us don't even realize exist.

it means things that should be simple have a few extra twists to them. it means every day activities can be a challenge. it means simple things that seem routine are a cause for celebration.

i consider myself a little hard lined when it comes to aspergers. i'm lucky enough that most people look at my son and thing he's stubborn or spoiled. and yes, that's a good thing. i've fought to make sure my son doesn't have a label on him. there's nothing in his medical charts or school charts that says "aspergers". i don't want him to have a label for other people to hold him back and i damn sure don't want him to have a label to rest on. i'm lucky that i can get away with that. we don't have the health issues or dietary issues or wide array of other things that some families have to learn to work around. we have the easy stuff. the behaviors and the stimming and the quirks.

since i started to notice some things different about my son i've worked hard to not let that become the focus of our lives. when he was a baby, maybe 2 or 3, i started to notice domino patterns. i don't know the real names of things, just how i describe them by the way. domino patterns were series of things that had to trigger the next item on the list for life to function. he had to be in bed, get a drink of water, say good night, then have the light turned off. if it was out of order in any way he wouldn't sleep. it was a series of switches and you had to get the right combination to get the machine to work right. for that one in particular it took MANY sleepless night (for both of us) but we worked through it. we still have a routine- 8 (ish) is bed time. he says good night, brushes his teeth and goes to bed. the magic is that the world doesn't end if it's out of order or if a step is missed. other have been easier. other have been harder. some we still haven't been able to unlock.

my son has a harder time learning than other kids. he's been in speech therapy since he turned 2. we've been working on abnormal speech patterns and language delays since he even started developing language. he's 9. i still have a hard time understanding him more often than not. he's working on reading and understanding and putting things together in the right order. it means his jokes get confused. he has a hard time finishing sentences when he's excited or when he's frustrated. it means he has a harder time communicating and can get in trouble easier than most kids because he can't tell his side of the story.

my kiddo has a resistance to new or different things. i had to drag him into the water at an indoor water park even though he loves swimming simply because it was new and different. he was crying and fighting me while other parents looked on in horror but after he got in, it was nearly as impossible to get him back out. i've learned that sometimes i have to ignore other people because i won't let him miss out on things. we've been the table many times at a restaurant with the crying kid because even though they have the same cheeseburger and fries as every other place in town, this one is new. i've had more than a few waiters/waitresses look at me strange when i didn't order something for my son because he was in the middle of an adjustment. after a few minutes of gathering himself and adjusting to the new surroundings he would realize he was hungry and that maybe i hadn't taken him to the gates of hell, and maybe ordering food would be ok.

aspergers, for us, means that when my son hears a joke on tv and people laugh he's going to remember it and repeat it. over. and over. and over. it doesn't matter what joke it was or if it's a joke that's ok for a 9 year old to tell. he just knows people laughed and he likes it when people laugh.

it means as soon as we figure out one behavior pattern and work through it another one is right around the corner. 

 

it means learning what neurological triggers are and what things we can work on and what things will always be an issue.

it means we had to learn a new way to communicate and focus. we have to work on holding still and maintaining eye contact.

it means when he has a melt down he isn't being a brat or being spoiled and it may take a long time to reset or we may be done for the day.

it means that when you promise him something, he WILL remember.

it means i have a harder time grounding him because he lacks attachment to objects.

it means that when you rough house with him it will NOT end well because he doesn't know when to stop.

it means that he has such a hard time reading social cues and making friends that he'll do ANYTHING to get kids to pay attention to him.

which means if you come over to visit he will do everything possible to be the center of attention.

it means that he flutters his hands and rocks back and forth.

it means no caffeine or we have a wet bed in the morning.

it means if he gets a gift card i will hear about it every five minutes until he get to spend it.

it means if he likes clothes he will NEVER take them off and if he doesn't like clothes he will NEVER wear them. 

it means that he cries easier when he's tired or growing.

it means he loses his temper when he feels slighted.

it means he loses teeth.

it means he doesn't like to eat his vegetables.

i means he doesn't like it when his brother is a jerk.

IT MEANS HE'S A KID.

it means that the next time you see a mom in the store with a kid having a melt down don't just assume it's a spoiled brat.

it means the next time you see a kid trying really hard to do something new, encourage them and help them.

it means if it takes a little longer to get a sentence out it's ok.

it means be a little more patient and judge a little less.

it means a million more things so ASK. start a conversation. learn. be aware:

a·ware [uh-wair] 

adjective

1. having knowledge; conscious; cognizant.

2. informed; alert; knowledgeable; sophisticated.