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Saturday, April 2, 2011

Caught unaware with my ribbons down..

  It is that time of year again..you know..where we are supposed to be "aware" or "More Aware"..or perhaps "spread awareness"...Time to tweet and blog and join face book events..and generally talk to the same people you do all throughout the year.  Yes-Autism awareness month is once again upon us..It is time to take off the brown ribbon of colo-rectal awareness month(March)  and don the blue or the puzzle piece one for autism (move over colons! Autism is in town)..or the green one for IBS awareness (that's too is in April..along with Alcohol awareness(red ribbon), and sexual assault and prevention awareness(teal ribbon) and a myriad of things we ought to be aware of-each with coinciding ribbons) . What to wear what to wear..

  I know without a doubt that when I walk into my children's school next week-there will be many puzzle piece ribbons..Well meaning individuals who are saying Look!"I am aware- I have a ribbon! I know someone with autism!"(Hey-just because I know people with colons-you won't catch me wearing a brown ribbon! The same goes for autism) .... I got a call from the school yesterday. It seems that Oscar was being teased. About what? I don't know. The only reason we do know about this is because one of his friends brought this to the attention of a teacher.  It was suggested that another child or children may have been making fun of Oscar's stimming. For reasons beyond ridiculous-I am not allowed to know who this child/children was/were or what exactly it is that he/she/they/they did. Only that he/she was/were firmly dealt with. No, I was told that it would be up to Oscar-(who may or may not be aware of what it is that happened) to tell me. That's right-put it on my son who has struggles with pragmatic language.  I stated that Oscar-was well aware of everything that goes on in his day-but, it might take him as much as a month to process it-and let me know. I then asked whether or not the other child/children  knew that Oscar was on the spectrum. I was told "no."..I asked what the kids at school were taught about autism..I was told "I don't know".. So where does that leave my boy?  Is he becoming the elephant in the room?   Oh sure, he might stim and giggle inappropriately, flap and "eee"-but we can't tell anyone why..can't explain any of it..no, somehow that would violate his privacy No, we'll just let him be who he is and not explain anything when somebody notices. Are you freaking kidding me? We can't explain that there might be a reason behind the things that he does-we'll just let other kids think he's weird. So, while we are being internationally "aware"-we are locally not going to acknowledge..and instead rely on assumption-and maybe a ribbon.   We'll just "assume" the other kids will figure it out?   As my fourth grade teacher -Sister Catherine Marita always said "Assuming makes an ass of you!" she also said "Your cruising for a bruising"-but that's a post for another day..

  I am sure that many will  say "But this is why we have an awareness month!!" "This is why it is so important!!"..Sure, we can talk and tweet and blog about acceptance or a cure (depending on where you stand) we can say that more research needs to be done, more supports given, accommodations offered..We can argue and sign petitions or not-yell about experience or inexperience and point of view and privilege...we can take a month and wear a ribbon....until next month when the topic changes (along with the ribbon). I don't negate the need for any of these things. I'm just saying that one month and a ribbon do not convey what my kids live every day. It doesn't even come close.

  Oscar came home from school yesterday in a messy mood. He told me that his day had been "all mixed up" (*sigh* part of this is my fault-I mixed up lunch boxes-and one does NOT interfere with Oscar's snacks!!) and that he was bullied at recess. Someone wanted his attention and he didn't want to give it. Now, I have no idea if this is the "incident" that I was called about. (believe me, I WILL find out) But I will say this-the boy he spoke about has issues of his own. Reasons for behaving the way in which he does. It does not excuse his behavior-it does however, help to explain it. Which goes a long way towards understanding.    

  Three of my four kids are on very different places of the spectrum-with Oscar being the most affected (for lack of a better word)  Oscar knows that he is different-he is aware.. He knows that most people don't "stim" like him..or flap or say "eeee". He knows-As do the people in his life. They also know that he is caring, and kind and very very funny. What some people need to understand-is why he does some of the things he does.There is a big difference between awareness and being aware. My kids don't need a ribbon or a puzzle piece or a color-they don't need a month...they need twelve..and they need it forever.

  So today, I wore my pajamas( all day)-as it was a snow day and the kids were home from school. (yup-just when we thought spring had sprung-mother nature played a nasty April fools joke..I'm so not laughing) Tomorrow-I will wear whatever is clean. Because awareness isn't a color-or a month.  It is every day.

6 comments:

Joeymom said...

I actually went in to school and talked with Joey's classmates about autism and Joey specifically. Might be worth considering, since our school also has very limited "diversity awareness" curriculum.

sharon said...

Nice post.

Sirenity said...

Oh, hugs!! Hugs and more hugs!

Cortney said...

I'd like to chime in from the teachers perspective if I may. At the beginning of this school year every staff member at the school including those who work behind a desk and have no contact with the kids had to take an Autism Awareness training on the computer. The school said it was so that if we are out in the community and people have questions we are better equipped to answer them. Now, I take my students out 2-3 times per week for Community Based Instruction so we get a lot of questions and a lot of "looks". And although I am allowed to answer people's questions I am not allowed to say, "These students have Autism". Instead I have to dance around the topic and say, "I work at a school for students with Autism". I teach students on the severe end of th spectrum, so it's quite obvious that they are different yet I am not allowed to say it. It's a double edged sword that I just can't risk jumping over sometimes. Privacy vs. Awareness.

heather@actingbalanced.com said...

While I agree with you that Autism is every day, if you take the time to shine a spotlight on something that people are receptive to hearing then it can be a good thing. I'm sure that a ribbon or even something like light it up blue is not all that should be happening, but it does allow people who otherwise wouldn't have the word Autism passing between their ears to perk up a little and maybe seek out more information. My blog is about me and my family, so I'm taking a concerted effort to make sure that I focus this month on the Autism that lurks at our house as opposed to anything else I could write...

kathleen said...

@Joeymom-That is what I was thinking of doing. I would also like to address the teachers as a group as well. Could you tell me if there was any one thing or things that you said that helped to convey your ideas? Was there anything that resonated with the kids or made the information easier to understand? I would love to hear about it. That would actually be a great post here-if you would be interested?

@Sharon-thank you.

@Sirenity-hugs back at you! :)

@Cortney-I do understand. You are placed in a precarious position. At my school there are some parents that do not want to discuss anything to do with autism-nor do they want their child's diagnosis made public. You make an excellent point. That's a difficult position to be in. I wish I had the answers...

@Cortney-I guess that I just get frustrated. I am all for awareness..my problem is this-sure we can get together and shine lights and wear ribbons-but the lights and the ribbons are gone on May first.Just like the people in March who were trying to raise awareness for colo-rectal awareness month..how much did you hear about them? This month is also "Alcohol awareness" month and "sexual assault and awareness" month. I only know this because I researched it. It would be different if they were causes I was involved in. I try in my own way (as do I think all of the bloggers on the directory)on my own personal blog- to raise awareness with every post that I publish.
I guess what I'm saying is that the majority of the people who are involved and participate in autism awareness month-were already involved and aware to begin with. Autism isn't an unknown word in our society. It shouldn't only have impact or meaning one month of the year.

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