Saturday, March 31, 2012

Autism and awareness at 13...Oh My!

~"Pretty much all the honest truth-telling there is in the world is done by children."~
Oliver Wendell Holmes

*Sigh* It is that time of year again..  Once again, I am being swamped with invitations and name it.  It seems that everyone is talking about wearing blue, lighting it up blue...and if it isn't about blue it is about puzzle pieces...April is Autism awareness month. AND once again, I'm being told by people already aware that we need to get together and be more aware so that unaware people will gain awareness. Say that ten times fast. I am not a fan of this yearly event, and I fully expressed my thoughts on this last April.  So..this year, I thought I would do something a little bit different. This year, I'm going right to the source. 

"Hey Sam!?"  "Yeah Mama?" "Come here please...I want to talk to you."  "What?" "I want to interview you."
"For what?".."My blog." "Your blog? O.K!.".."It is gonna be about that o.k?." "Umm yeah...sure."  "I'm just going to ask you some questions..alright?" .."sure."

Me-"Have you seen those ribbons people wear?  They are either blue or colorful with puzzle pieces on the?"
Sam-"Ribbons?....Oh! yes-yes I have."
Me-"Do you know what they are for?"
Sam-"Not really."
Me-"They are supposed to represent "autism" month is autism awareness month."
Sam"What's that?"
Me-" means that the month is dedicated to making people aware about autism...What do you think about that?"
Sam-"Do you mean "cure it"."
Me-"Maybe some people."
Sam-"Then I don't like it."
Sam-"Because you shouldn't poke around in peoples might mess them up."
Me-"Yeah...but..well...look at you. You are going to go to will have a Oscar on the other hand might not...and what about Frank? (Frank(changed name) is a boy that we know who is severely affected by autism) Things sometimes seem harder for them.  What do you think we should do for them?
Sam-Hey..they are good guys!  I like them just the way they are!"
Me-"But what do you think we should do for them?"
Sam"We should educate them..make sure they are's like that line.."
Sam-"You know..I'm on one part of it..and Oscar is on another?"
Me-"You mean the spectrum."
Sam-"Yes-the spectrum.  Look-just because they are on one place doesn't mean they aren't people! Hey-they might be different..but they are people. They have feelings!"
Me-Hey-I agree with you! 
Sam-"Look-being different is o.k.!"
Me-"It is! I think though..well..I think sometimes different is hard."
Me-"You are different from a lot of your friends at school"
Me-"Does having autism bother you?"
Me-"Well...tell me what you like about it?"
Sam-"I like how I think. The pictures I see."
Me-"What don't you like?"
Sam-"Well..look-everyone at school is always texting...the guys are all in the hall texting the girls and they are texting back..and I don't understand it..I don't get it. That doesn't interest me.."

(as a side note-I think the world at large texts way too much.  Funny-my kids were taught that they had to TALK to people..and all the people they have been made to talk to- are texting.  Anyone else see the irony here?)
Me-"That's alright..You don't have to be interested....Do you know what the word disability means?"
Me" is like this..if you were blind-you would be considered disabled...because the world in general is built around people who can see.."
Me-"Well...did you know that autism is considered a disability?" That some of the things that affect you are considered a disability..Like how you don't like to sweat..or..remember when you stopped talking?"
Sam-"I do remember. I couldn't hear what people were saying was like everyone's words sounded all blingglablahblahgla...I could here some words...but mostly it was all mixed up..I used to only see the movies I watched over and over in my head..I knew who you were..but everything was black around me...except for the movies...and then you remember standing on that porch with me?"
Me-"What porch?"
Sam-"It was when we lived in the blue house..I was standing there with you and it was like everything snapped into place..and the movies in my head stopped.
Me"Wow..just..I never knew that."
Sam-"Yeah it was like I got colors back."
Me-"That is really really interesting everything sound right now?"
Sam-"Well if people are far away and they talk to me...sometimes the words still get mixed up."
Me-"That is considered a disability..auditory processing disorder.."
Sam-"Look-everyone is on the spectrum"
Me-"what do you mean?"
Sam-"Look, the whole world is a spectrum and we are on it."
Me-"Well...there are adults who as they got to be my age, say that they identify with autism..that maybe they are on the spectrum..."
Me-"What's so funny?"
Sam-"Why?'s like biting your tongue and telling people you you get what I'm saying?"
Sam-"Say someone lived inside their house and bit there tongue...and then years later came out and told people they bit there tongue.  What's the point?"
Me-"I..well..I don't know."
Sam-"We are all on the spectrum somewhere..."
Me-"So how do you feel about this whole awareness thing?"
Sam-"'s like that ribbon is a giant monster...and its birthday is in the month of April..and everyone has to celebrate it's birthday or they will be turned into little monsters. Do you get it?"
Me-"Maybe...I have to think about that one.."
Sam-"Alright...can we be done? Can I go on the computer?"
Me-"Yeah...thanks buddy."

    There is really nothing more that I can add to this.  I believe I will let my sons words stand on their own.  Because they can-and isn't that wonderful?   This week, Sam (much to his delight) surpassed me in height..perhaps he surpassed me in wisdom as well.
 "Out of the mouths of babes oft times come gems..."(prov.)

If you care to comment-please remember-this is my son-I would appreciate if you would respect that.


farmwifetwo said...

I told the school they weren't allowed to tell the eldest anything was up. No "wallowing" in autism for us. No using it as an excuse for social skills, behaviour, learning etc. I have a 2" binder full of all the assessments, IEP's etc... we have done hours of public and private speech, we just lost OT at school, we finally have a permanent laptop this year.... And someone squealed at the start of the year.

I looked at him and said "You have things that don't work 100% and we'll keep working on them, but you are "normal". You will be able to get a job, get married, have your own house. Your brother is autistic. Your brother is disabled. He will never be able to do those things. Not you."

He does know that he'll probably be dx'd with ADHD on the 10th. He's been told it's just an explanation for the way he does things and nothing will change. He's not happy about the meds but he can't cope any longer and I suspect most parents would have caved long before I did... instead we and the school worked at it every day... now it's "wrong" and he needs help we cannot supply.

He's 12. Puberty is going to be fun.... NOT!!! He has to be part of the process. But I won't allow him to call himself disabled, won't allow him to identify himself with a group of people so they can hijack the disability and claim my youngest is not disabled.

There is no such thing as "normal", but there is definately a line where one is disabled and one is not.

So, needless to say... we aren't doing awareness this month.

Lizbeth said...

Kathleen---your little one is wise beyond his years. He could teach us a thing or one-hundred. I totally got his biting his tongue reference and coming out later and telling everyone about it. Totally got it. I love our kids just the way they are and he nailed it---every one of us are on the greater spectrum.

It's amazing how a child (well not to much anymore, eh?) can teach us new things every day.

I heart your Sam.

Kim Wombles said...

Sam is awesome!

Dixie Redmond said...

Something Sam said gave me some deep insight into my son who is older which I'm going to pass on to school. Thank you for sharing!

jazzygal said...

Wow. Your Sam is simply amazing. He's done EXACTLY what I think Autism Awareness Month/Day is all about...making people aware of whet it's like to be on the spectrum. And he is of course is just one big spectrum and we're all on it!

By the boy has bypassed me in height this week too! Literally by a hair breath.


Looking for Blue Sky said...

I love the way that children just say it as it is :) I suppose in terms of autism awareness I would feel it's about services in Ireland: the ones available aren't great and perhaps the public still don't understand that. Even the most uncaring would probably be interested to know that financially, never mind humanely, it makes sense to help children with autism to reach their full potential.

Michelle said...

Love it. I think it is fascinating to get inside our kid's heads - even just a brief glimpse. And I love how accepting and matter of fact kids can be. It seems to be a refreshing spectrum side effect. I follow a few autism blogs to help me feel grounded and you are always one of my favorites.

Patty O. said...

What your son said was really very profound! Thank you for sharing it! I think this just shows that Autism Awareness Month really isn't for the kids and adults with autism at all.

iPhones4Autism_ie said...

Aw, I commented here 2 days ago under Jazzygal and it's gone :-( I just popped back in to see if you'd be ok with me linking to to this post of yours on a post I'm going to put up soon on this site!!

Your Sam is amazing and he gives a wonderful insight into Autism..and the world as a spectrum. He's right of course!!

xx Jazzy

Anonymous said...

Sammy is one terrific and wise kid. Fabulous post!!

From One Proud Aunt XXOO Ei

Stephanie said...

Your son is awesome! But, of course, you know that.

I don't get the monster thing, though. At least, I understand what I would mean with that metaphor, but I'm not sure if he means the same thing.

kathleen said...

Thankyou for all the comments-Sam appreciated them..
Farmwife-I agree..Sam does not see himself as disabled-he knows that there are some things that are difficult for him-but he takes it in stride..My younger son-who has been more impacted? by autism doesn't see himself as disabled either..He knows that he is different..that he has to work harder on many things-but, he has great self esteem...he is confident in who he is. I agree on the hi-jacking. There are many in this online "community" who did not have the early struggles that some of my kids did-and yet, they are quite comfortable in telling me just where I am wrong-because somehow magically the "know" better...*sigh*
@Lizbeth-thanks..I know that you know..again *sigh*
@Dixie-You really made Sam's day with that. He hopes that he did indeed help. :)
@JazzyGal-Thanks...I can't believe how fast our boys are growing-Not only in height!!
@Kwombles-why yes he is! :)
@Looking for bluesky-I agree with here are greatly lacking as well..We need awareness everyday-not just for autism..but for all of our most vulnerable people...
@Michelle-kids are great that way aren't they? :) Thank you for such a lovely compliment!
@PattyO-Absolutely!! Hee-Sam LOVED that you used the word "profound"!!!
@anonymous-Sam says "Thanks aunt Leenie!!"
@Stephanie-Thanks. :) No-I'm not quite sure what he meant either..I can surmise...The thing is-when he was done with this conversation-he was Sam's mind..either I "get it" or I don't..:0

Stephanie said...

I know what that's like. Willy gets so exacerbated with me when I ask him to explain. He'll keep talking sometimes, but he has trouble re-phrasing.

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