Are you aware of awareness?

Next month is Autism Awareness Month. And as you all know- I have an autistic  child. So my blog and  my "mainstream" Facebook page will be all over it. I am aware of Autism every damn day- and I  post news articles, fundraising events, advocacy opportunities  and blogs concerning  Autism all of the time.  I share my son's life- his ups and downs and my joys and frustrations pretty much daily.  Just forewarning you all- that in April it will be a constant bombardment. My goal? To educate as many people as I possibly can about Autism.
 Like I said- it is Autism Awareness Day every single day at my house- as well as for anyone else dealing with it. Highlighting a month to be more aware, spread information and put the spotlight on things is a good thing- don't get me wrong- but how many folks (with the exception of those dealing with these things daily) remember squat about these things?  I feel it is my mission to bombard the masses (in my own special little corner here) with facts,myths stories, videos, and whatever else I can do until it is burned into their brain. And if people only remember one thing- just one- and share it with someone else, and they share and so on and so forth, then I have accomplished a small part of my goal.

So let me start by saying that many people (maybe you) rely on what the media tells you about autism. Let me say that the media representation of Autism is built on the most outrageous or sensational things just maintaining a grain of truth.   Not ALL Autistics are Rain Man- that is a VERY small percentage of what is known as Savantism and not all autistic are savants- just as all savants aren't autistic. Believe me- when the word Autism first came up with my boy- that was the first thing I thought of.  Yes- a lot of autistic kids and adults have an area of expertise- my son's happens to be about dinosaurs. He can remember a 100 different dinosaurs names, time they lived , what they ate, but can't memorize his times tables. Go figure.  It's just the way his brain is wired- and that's that.

Autism occurs now in 1 in 100 kids- 1 in 70 boys. This number has changed drastically even since my son was diagnosed in 2006. From 1 in 150, to 1 in 110 and now to 1 in 100. Damn. Scary thought isn't it? Now many will say that the jump in numbers is due to better diagnostics, increased awareness, etc. It IS true that Autism is a SPECTRUM disorder- ranging from the high functioning such as Aspergers Syndrome  and High Functioning Autism to Severe Autism to PDD-NOS ( which is just a way of saying your child doesn't meet all the diagnostic criteria for Autism- but has enough so we can label them) and yes- to some degree there is some truth to the better diagnostics answer- but I really don't believe that is all there is to it. But that my friends is a blog for another day. 

So this blog is just a preview for the month of April.  I will be writing about different things about Autism, organizations affiliated with Autism. my giant let down by Autism Speaks and my mission to win my son's teacher an iPad for her class and so much more! I am hoping to get some guest bloggers  that I can showcase as well. Hint, hint people! Hit me up- I want to hear what you have to say! Even if you aren't a parent of an autistic child, ask me questions, give me ideas and opinions. It is what awareness is all about after all.

Son-You have Autism

I have a confession to make. My son was diagnosed with Autism at 3.5 years old. He is now 8 years old and I have yet to tell him about his "condition". We told his brother and sister right away. It gave them a sense of understanding that he was different.  Now they had a reason why he was as he was. The word Autism itself helped them adjust to who he had always been and who he would become.
He sees a neurologist, which we just call going to the doctor, he takes meds for extreme ADHD and meds to sleep at night. He is in an autistic class and has been since mid kindergarten. His dad says that he knows he's different. That very may well be, but I have never put a name to it- not for him anyway. And dammit- I want to be able to tell him he's not so different- even though his diagnosis means he IS!   I don't even know where I would begin- what is appropriate to say and not to say and how much could he understand anyway? He is only 8 years old after all. I don't want to make him feel self conscious about some of his behaviors, but I also want him to embrace the things that make him shine- without feeling like it's negative, or not looked upon favorably by "normal" people.
I watch the show Parenthood- fantastic show- amazing writing- and a very well done take on a family dealing with Asperger's Syndrome. Now my son is diagnosed High Functioning Autism (HFA) which only differs from Aspergers in that he did not have normal speech development.  They are dealing with telling their son about his Aspergers.  Very emotional show for me, as I can see what fictional characters do, and I can comment on what I thought they were doing right/wrong. And it really got my mind working- how will I tell my son? When will I tell my son? How will he react? Will I cry? Will my husband cry? There are so many questions I just want to put it on the shelf for now and wait it out.
I then come to another bump in the road-  the school he is in has autistic classes. The students in the entire school are aware and very accepting of the autistic students. Our goal is to have him return to school where we live next year. The student population here is not taught to be as accepting. I am worried that some of the teachers might not be either.  So now I really have to think about talking to him so he is prepared for what he might experience. 
He is a bright kid- I do agree with my husband that he knows he is "different"  than other kids his age. I also know he is his own worst critic (aren't we all!) but the Autism seems to amplify those feelings of inadequacy and fear of failing  to the point of near meltdown. This is one of the biggest negative things to have to deal with. If you have ever witnessed a full blown autistic meltdown then you know what I am saying.  If you haven't...well...I really can't describe it for you. Think a "normal" child's tantrum and then multiply that by 1000.
I am not ashamed of my son's autism- but I can say I wish he wasn't autistic. The diagnosis of autism is traumatizing for a parent- and when I do end up telling him I want to AVOID traumatizing him. But I need to be able to be objective and I don't see how I can- this is MY kid.  I want him to know all the strengths he has- being able to name nearly every dinosaur and tell me what period they lived in.  Knowing all gazillion Pokemon and their respective powers. These are amazing memory skills that not everyone possesses.  But then there is the flip-side of the diagnosis. There are negatives- and while I don't want to dwell on them he still needs to know. The  meltdowns, inability to focus and get school work done,  trouble with organization, and  inability to block out noise.  His lack of social skills in starting and maintaining and then ending a conversation. These unfortunately are the darkness to the light and completely unavoidable.
The day is fast approaching when the conversation will have to be had, I have a lot of food for thought- books to look into as well as parents of other kids on the spectrum to help guide me through.  My biggest goal- to make sure he knows that yes, he is different- but he was made that way for a reason- and to accept and embrace his differences will make it easier on others around him to accept and embrace his differences as well.