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 promotions..fundraisers...you 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 autism...is 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"...next month is autism awareness month."

Sam"What's that?"

Me-"Well..it 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."

Me-"Why?"

Sam-"Because you shouldn't poke around in peoples brains..it might mess them up."

Me-"Yeah...but..well...look at you. You are going to go to college..you will have a career..now 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 o.k...it's like that line.."

Me-"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."

Sam"..yeah.."

Me-"You are different from a lot of your friends at school"

Sam-"yeah.."

Me-"Does having autism bother you?"

Sam-"..hhmmm..sometimes?

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?"

Sam-"No"

Me"Well..it is like this..if you were blind-you would be considered disabled...because the world in general is built around people who can see.."

Sam-"o.k."

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 ..it 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 ...do 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 buddy..wow......does 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..."

Sam-"hahahahahahahahahaha.."

Me-"What's so funny?"

Sam-"Why?..Look..it's like biting your tongue and telling people you did...do you get what I'm saying?"

Me"..uummm..No..."

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-"Look..it'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."

Sam-"Sure"

    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.

Biting my tongue tripping over memory lane...

~"The past is never dead, it is not even past."  ~William Faulkner 

  "Mama?...Why doesn't Oscar want to play with me?".."Well...why don't you ask him?" "I did..He says he doesn't want to play..he just wants to be on the computer..That's all he ever wants to do!!." "That's not true Sammy-there are plenty of times when Oscar plays with you.."I know but I just wish he wanted to play more!" "I know bud." "I just don't know why he doesn't act like me!!" "Because he acts like him!"  "Why?!" .."Well...what do you mean?" "He's always watching the same things and yelling out the same words and laughing." "Yeah...?" "Well why does he do that?" "I..well..I don't know...you know, it wouldn't hurt to ask?"
  "Hey Oscar"..."Yes Mama?" "Why do you keep yelling the word "pingus" and laughing?" "It's "Robotnics-the last pingus vendor....from YouTube."  "So why do you yell the word "pingus" over and over and laugh?" "Because it's funny."..."But WHY is it funny?"..."Because it is from "Robotnics"..."And?????" "It's funny" Well,  I guess that will just have to do-explanation wise. Oscar struggles with "W' kinds of questions. (when, why, who, what)  So I'll just to have to take his explanation at face value...and really, after hearing him rewind the YouTube video (to that particular word) fifty million times..and then yelling "Pingus" over and over and laughing...it does start to sound funny..Or I have just lost my mind...It has been a difficult time here at chez Herd lately..

  With Oscar going through so much (new school next year, changes in routine, difficulty concentrating,...) we decided to have another evaluation done.  He's a great kid (always) who is capable of so many things-sometimes. *SIGH*  Sometimes meaning that he can do something on one day-and on another..it's like he draws a blank. He will learn something new..and the next day-forget how to do it...only to be able to do it again days later. This has been a HUGE challenge for the people who work with him.  They, like me-don't want to push him into doing things he is just unable to do.  But, at the same time..we don't want to not push simply because he isn't interested in trying at the moment. Oscar struggles.. with sensory issues, self expression..pragmatic language...and sometimes...sometimes he's just lazy. Hey-he is an eleven year old boy first and foremost!   It's the separating of the boy from the disability that we are all having trouble with..(school wise) Thus the new evaluation...

  Two weeks ago we had our first appointment. As I sat in the waiting room, I couldn't help but remember the first time we had done this(seven years ago-with Oscar).  We knew that he was on the spectrum.. What we didn't know was how to help him. We were really hoping to get some answers. Which we did-sort of.  The team of diagnosticians were very nice-they weren't exactly jumping in with advice...we were told "We only do the diagnosis..we don't involve ourselves with schools, services or planning"..in other words "Here's your diagnosis-don't let the door slap you in the ass on the way out.". It was terrifying. What should we do-how should we do it?  This was our boy-and we hadn't a clue as to how to help him. *sigh*   There was nothing for us to do except to  muddle through the best that we could.  I look at our boy-our beautiful son seven years later-and think we might have done alright by him. He is wonderful and funny and just joyful. Really, there aren't enough adjectives to describe the incredibleness(made that one up) that he is.. So as I sat in that waiting room, I thought to myself.."This time-this time will be different..this time we know what we are talking about..we know what questions to ask..this time we will get some answers-we will make things right for him.."

  The pediatrician was a very nice woman who had a lot to say.  A lot. She introduced herself to Oscar...and then she sent him to the play area so that we could talk..and talk she did.. "So, you wrote that you had concerns over anxiety and that he is easily distracted." "Yes." And off she went-hardly letting us get a word in edgewise-punctuating all of her points with a smile..Like she was giving us friendly advice but was afraid to offend.   She said things like "ADHD can be co-morbid with autism...do you know what co-morbid means?"(smile).."Yes, we do".."Well, co-morbid means...blah blah blah..."(smile)..I bit my tongue.
"So, he doesn't like to try different foods?".."No..he will try something new-but always says he doesn't like it".."You know, you have to make him try new foods..blah blah blah..(smile)." I bit my tongue.
 "I see that he doesn't like to leave the house".."No-he really doesn't, unless it something he likes to do." Omar at this point discussed what we do when we go out out.had she listened, she would have heard all the things that Oscar does-on his own-in the world...but instead.."Well-he HAS to go out and do things! (smile)I bit my tongue...how do you expect him to be an adult in the world if you don't make him have new experiences(smile)(my tongue is starting to hurt)..maybe he would work better with someone else(smile)(my poor tongue)...Who do you have to support you?  "Each other"  "You don't have support? Why isn't he in a social group? You really ought to consider a home aide who will bring him places and make him try new things(smile)(my tongue really hurts now)..he probably would go out and do things with someone other than his parent..and really..you can't possibly do it all."(BIG smile)(I am close to biting my tongue in half)
   We just sat there and let her go on..let her tell us how important discussing puberty with someone on the spectrum was..Not that she paid any attention on how we have already gone through this with our other son ON THE SPECTRUM..(who by the way- is quite proud of his arm pit hair)..She was so full of....herself knowledge and information..I think she might have exploded had we not let her just empty herself of words. I say that with a big grin. It isn't like she actually listened to what we were saying.  Really, she could just tape record herself speaking-leaving a blank where you could insert your child's name.  I think I might lay the blame at our regular pediatricians feet for this.  He had told her that we were knowledgeable-well informed..I think she took that to mean "know it alls"and had to prove through incessant talking that she knew MORE...or maybe she just likes the sound of her voice.  Either way, it was a huge let down.

  As we were walking out to leave, carrying a huge pile of forms to fill out and gigantic headaches..she called out "I'll send you information on puberty in the mail"(smile)(I may have severed an artery in my tongue) We just nodded our thanks and left. I think that we both felt a bit deflated.

   We had gone in with such high expectations..On the way home, I said to Omar.(which was hard- remember my tongue)."You know, all this would have been great seven years ago.." he said.."Lets just get through the rest of it...we'll take any information that will help Oscar and just ignore the other stuff".(.My Omar is a smart guy).  Our next appointment is in two weeks.This time she will work with Oscar.  I hope that she see's the person that he is..how much he has accomplished...how hard he tries.  I hope that she lets him get a word in edgewise.  I swear if she doesn't-I'm just going to look at her and yell "Pingus!" and laugh hysterically while I of course...smile.  My tongue should be healed by then.