Saturday, March 29, 2014

15, autistic and wary of awareness....

 ~"These are the things that require neither signs nor       labels. Churches, coffins, and urinals all proclaim,
This is what I am.
No questions asked."
~ Andrew Smith~Grasshopper Jungle

  Autism awareness month is about to rear it's weird head..and I have been wondering (after five plus years of blogging)- what more I could say about it. By this point everyone is aware-so, now what? Really? What does awareness mean or do anyway?  This past week-I have learned what it means to my Sam.(I didn't even know that he was paying attention..*sigh*) He is fifteen, autistic..and one of the best people that I know.  He doesn't like the "lighting it up blue" or the puzzle piece symbolism.  In one conversation, he equated all of that with Nazi Germany-telling me that he felt as if he were being marked much like the yellow star or pink triangles from then. He makes a lot of sense-and, being autistic-he has even more of a say in what this month represents to him than most other people. The following (in red) are his words-his thoughts.  the drawing is his as well...So, without further ado-I'm going to kick off this whole awareness month with the thoughts of my son. These are his words.

This month always separates us into two groups-the "afraid" and the "feared".  The afraid, not knowing what autism is- create hate (or the opportunity to abuse) making the "feared"(autistic peoples) lives miserable. The people trying to "help" are filled with pride which makes them feel special.  They always talk about the problems, what "they" can not do and NOT what they CAN do.Making not only themselves blind..but even some autistic people as well- especially when they try and embrace this blindness. They blind potential.  Another part of this parade of abuse...this march of madness..makes siblings who don't have autism look like their lives are miserable. But, the saddest part of this is that a lot of people are too blind to see the truth.  Please end the madness.


farmwifetwo said...

Awareness comes by living. Awareness comes by working within the system and parenting. Awareness comes by not justifying those with autism to abuse others but to work with them to control the outbursts. Awareness comes from not making excuses but looking at it head on and saying "I need help". Awareness comes from acknowledging the disability and not thinking of it as a "difference".

That is why they are feared... the meltdowns.

Here, there is no such fear. No, they are more pissy because my eldest went from speech delays, and ID to Univ stream in h/s in Gr 9 getting A's without studying. If mine can do it what's the "normal" parents excuse... and I've heard rumblings and I'm not surprised just glad we're gone from the PS. Although, when asked and I tell them what to do... they tune me out and they aren't polite about it either. Their problem... not mine.

Then there's the other in Gr 7. Again learning faster than most "normal" kids, no longer ID, in self-contained so he can thrive due to being on the "severe/mod" end of the spectrum. No behaviour. No meltdowns. Some hand wringing and biting of that hand - PT is helping - but all being dealt with quickly and easily.

We don't hide, but we do behave in public. We have had a lot of support, no fear, in public.

Awareness starts at home. No hiding, no behaviour, lots of parenting = acceptance and support from the wider community.

The actual "awareness" crap... I ignore and refuse to take part in. I did last year for the first time, it will be the last time.

Floortime Lite Mama said...

omg what an awesome POV
Love it

denise said...

Thank you Sam. This was beautifully written. I am going to post this link on my FB page every single time I get into an argument with someone when I tell them the puzzle symbol and awareness stuff are offensive and they tell me, "Well some families like them."

Jennifer Bittner said...

This really made me stop and think. Please tell you son I said "thank you" for taking the time to write this and educating us.

kathleen said...

Thank you all for the comments. I have been sharing them with Sam. He is so happy that people are LISTENING to him-hearing what he has to say. Taking him seriously.

jazzygal said...

I think it is very important to listen to fine young men and women like Sam.His feelings raise a very important point.

At some point us parents have to stop talking on behalf of our kids. While not all of them have their own voices there are a lot that do. We should be asking them for their point of views.

Well said Sam, you could very well be starting your own movement and I commend you for that. Never be afraid to let your voice be heard....

xx Jazzy

Full Spectrum Mama said...

I am going to share your words and Sam's words with my son. They very much articulate the root of why "awareness" sometimes rubs us the wrong way. THANK YOU.
We are listening.

kathleen said...

@ Jazzy-yes! Asking for a point of view and listening to it! Sam said "thanks" for your comment
@Full spectrum-Sam was really happy to hear this. He said "Thank you" too!