Monday, April 1, 2013

For Sale : Extra Autism Awareness

Today, April 1st, I am holding a sale on autism awareness.  As you might know, tomorrow, April 2nd, is the sixth annual autism awareness day.  I find myself with some extra autism awareness, having accumulated the equivalent of over 50,000 days of autism awareness in just a few short years, so if anyone finds themselves a little short, I am willing to part with some awareness.

If you are interested in some of my accumulated extra awareness, you will have the chance to experience, by proxy, the purely happy, wonderful little girls that are my children.  You will be in awe of what they can do in spite of facing significant challenges from autism and how hard they are willing to work to get past their limitations.

You will get to experience the joy when they manage to break through one of the limitations that autism has placed on them and be able to get to know them in a whole new way.  You will have the chance to know that they are not defined by their autism and that they are their own individuals, whole and complete, even if they cannot always show it.

You will have to look far and wide to find awareness of sweeter, more lovely, or affectionate little girls.  Everyone who has ever worked with or known any of the three has quite literally fallen in love with them, for good reason, and you will too.

However, there are a few disclaimers that I am obligated to include as well.

You will come to know and love the slogan "sleep is for the weak".  If you enjoy actually getting a solid eight hours of sleep a night or having the opportunity to have uninterrupted sleep more than once a week, this is not the awareness for you.

If you are the sort of person who is unable to put aside your affection and love for your child and do what is in their best interest, then this is not the awareness for you.  You will have to experience the emotional consequences for acting in a way that will best help your child while not wanting to do it at the same time.  Remember, it isn't about you, it is about the children.

You if would like to grow old gradually or gracefully and not start looking old before your time, then this is not the awareness for you.  Seriously, when you get your hair cut the white hair will make it look like it is snowing.

Most importantly, if you have dreams of there ever being a time when you don't have to worry about the future or having a time when the awareness can fade, then this might not be the awareness for you.  I don't have any way of knowing what the future might bring or what the outcome will be, but there is a very real possibility that this awareness and the constant worry for the future will be with you from now until your last day.

But don't let those few disclaimers get in the way of stocking up on extra autism awareness in time for tomorrow's awareness day.  After all, the chance to get to know these wonderful children is well worth the the extra cost.  All of the fashionable people will be sporting extra awareness and you should too.


Hmm, you still here reading?  Since this post is going to be up on autism awareness day, I guess there should be a serious point rather being rather flippant about the whole thing.  OK, here is the little bit of the serious that I hinted at above, but I don't think it is going to be a popular point.

There is a lot of talk in the autism community about how autism advocacy should be entirely about the people who have autism.  After all, they are the ones who get to experience the joy of autism first hand.  But the one idea that gets lost in all of the rhetoric of "nothing about us without us" and other feel good slogans such as "I shouldn't have to change" is the cost of autism to entire extended family.

For every one person with autism there are typically going to be at least three, four, or many more other people who are going to be profoundly impacted by that person's autism as well.  So, as unpopular as this idea is going to be, autism advocacy shouldn't be completely about just the people who have autism.

Don't misunderstand, this isn't some woe is me rant from yet another parent.  I am not saying that autism has ruined my life or any other such tale of misery.  I actually like my children and enjoy spending time with them; as I said above, they are truly great little girls and I wouldn't give them up for the world.  I may wish that they didn't struggle with autism but I certainly wouldn't trade them for other "normal" children.

But, at the same time, living with autism - even if you don't experience it first hand - extracts a high professional, social, personal, and health cost and these costs are not limited to the immediate family.  Everybody who is involved feels some of the impact of autism whether it be the parents who bear the brunt of the dealing with the joy of autism on a daily basis to grandparents to other family members and friends who try to help out.

Anyway, that is the serious bit of awareness - the cost of autism to people other than those who have autism.  So, if you happen to know a family whose children have autism (and given how common it is now, you probably do) try to be nice to them.  They are dealing with a lot and can use any help you can provide.


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