It has been a very long couple of days and thank God for
cheesecake or I may have felt totally alone by now. Phillip was not drinking
his spirulina laced juice for a few days; in fact he wasn’t drinking or eating
much at all. So, the after effects of a system change and I assume major life
change have begun to kick in. One the move faster than usual, his ears appear to
have completely stopped working, habits are coming in full force such as asking
for a bath every hour, and total intolerance for any public place have all taken
over.
It
doesn’t help my own stress level has elevated due to certain life issues I need
to make a firm decision on but difficult decisions so it sits in my mind and
takes up space I need to store more patience in.
Since
moving I have gotten a real taste of how much autism awareness is really out
there in the greater population. Let me tell ya, we have a very long way to go
before people are aware. Not just aware of what autism is but aware of how to
have some kind of social manners towards others who are packing some autism induced
behaviors around with them in life.
Today was a difficult day and unfortunately
isn’t nearly close to over yet, but it began with an argument with my daughter
about getting her room cleaned. After the incident I realized I was a jerk and even
though she knew this and so did I, I was still a jerk. Then I had to go to
Target to get a few things and my oldest son decided to come with along with
Phillip. I can’t leave him home all the time and every time I take him
somewhere I like to think, this is going to be a good outing. More often than
not, I am wrong and today that was one of those days. The reason is routine and
the one time he has been in Target he wasn’t given time to take it in which led
to a meltdown. Routine creates the mindset for him that this is how it will go
next time as well. He was given time and plenty of time but still we had to
repeat the last visit. He may move away from this with time, but for now Target
is his target meltdown zone.
Here is
where the lack of awareness comes in. There was not one person who did not slow
down to watch, to observe his behavior, and the looks on the faces where full
of disgust. Not so much directed at Phillip but me. I could actually see on their
faces the wonder what I was going to do about my out of control child. If autism
awareness was strong in society these looks by so many would not be tossed at
me so quickly. Now I know if another autism parent were to have walked by I may
have gotten a smile or a hang in there, but there was no kindness in sight. I
could also clearly see the frustration on my oldest sons face and it wasn’t
because of his little brother. I assume it’s from being stared at by strangers
in an unpleasant way. Understandable at fourteen years old, especially when he
tries to help and just wants his little brother to stop. He would have preferred
for me to leave Phillip home but I can’t just keep him out of public places and
then assume when we have to go he will be ok either. Leaves you in the hard
place of knowing leaving him home isn’t good and yet taking him with us also
might not be good.
In all
of the awareness parents are trying raise is it actually getting to the right
people? By that I mean to people who really aren’t aware. Or are we spending
hours and hours just babbling to each other things we already know. Does it
have to take someone actually having an autistic child to learn? No, but what
can we do other than what we are already doing to reach people is what comes
into my mind. What can I possibly do to raise awareness to a point most of the
people walking by might consider autism is literally hitting me in the head out
the door. Face book, blogging, and trying to explain the difference is great
but it’s not enough.
I am
not going to put a bumper sticker on my car or put a t-shirt on my child that
shouts autism, because if I do that no one sees Phillip. They bypass who he is
to look for the autism and that is not how I want him to live his life. I want
people to bypass autism and look for Phillip because they know and understand
enough to do that. Although that is sort of a silly statement after what we
just went through at Target because even Phillip couldn’t bypass the autism to
look for himself. He is also just three and doesn’t know he has autism. It’s
the last thing on his mind when he is throwing himself around on the floor, and
the first thing on mine.
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