Autism seems to redefine itself daily in our house. On Thursday, I went to my Autism Support
group meeting and was downright overwhelmed by the stories told that night by
the other mothers. I hear the Dad’s
group has the same rawness to it that our group does despite the gender
differences. Raw is raw. Autism is just that. Raw.
It’s taking a deep effect on families from overblown stress that breaks
the family down and then kicks them while they are there or pushing them even
further into the depths of everything it means to live with Autism. I know there are days when I wonder if I can
do this and do it well. There are days
when I just want to check out and get some much needed sleep. I always wonder what would happen if I gave
up my fight. On Thursday I heard some
stories of what that looks like when parents just can’t do it all anymore. And I wonder, because these kids were only a
few years older than Ben is now. And
these parents are strong parents. They
say caring for a child with a disability/special needs ages a parent faster
than fast (6 years to every 1 year of care in fact). After that meeting I saw it in person. And I admit that it scared the crap out of
me. These folks had partners too…so I
was double scared. I came into that
meeting for the first time in months having some extra strength to give and
support I could spare for others. I was
honored to listen to their stories and shed my tears for them and their families. I was deeply affected by the grace, humor, love
and dedication these Moms showed in being open and honest. I was still crying a bit the next
morning.
Saturday rolled around and I took Ben back to the Autism
Center for a Halloween event (read: low
key). He did pretty well and kept his
costume on for about 20 minutes total before finally ripping it off. He even got the concept of taking one piece
of candy and putting it in his ghost pail.
And I’m not sure exactly why, but his behaviors seem to be pronounced
this weekend. Maybe it’s the extra Iron
he’s on now to bring his levels up? It
just seemed like he went a little further into the moderate to severely
affected side of Autism from the slightly to moderate side. The needle pushed a little to the left. The high pitched screams were rampant. The lack of eye contact was noticeable. The echolalia was pronounced. Getting stuck on words and repeating them
over and over and over almost like it was an OCD tick of sorts. The hand movements and gestures and
flapping. And as I sat in the room with
all the other kids on the spectrum, I was overwhelmed. I always think that Ben wouldn’t blend in
with the group of kids on the moderate to severely affected side of the
scale. Today he stood out in that he did
blend in, maybe more so than others in fact.
It breaks my heart when that realization comes in but I have to remember
that it’s just that day and tomorrow will be different yet still.
Sunday saw us heading to the beach for an impromptu photo
shoot as the weather was nice for a few hours.
I took 324 pictures to get about 15 great ones. Thank goodness for digital cameras! Autism seemed to have a hold of him more
today as well. It wasn’t too bad at
home, but as soon as we were in public it got him again. No responding to his name. At all.
No fear and running into the ocean over and over. Loud loud sounds and screams. Never ending energy that had others
commenting as they observed. Just about
IMPOSSIBLE to get eye contact for a picture.
I wish we could have one picture of the two of us with his eyes looking
at the camera and smiling along with me but he’s always looking elsewhere or it
looks like (because I am) I’m holding his head/body to make him look up. He’s sleeping better with the Iron
supplements now. But then this. And at the end of the day, I have to wonder
if this is all just a problem for me and not him. He doesn’t know the difference between how he’s
acting and how he should be acting and who’s to say others are right to expect
him to fit into a mold. What if he’s
using more of his brain than the rest of us do and therefore behaviors are
different? What if we are the ones who
are behind? Why am I wanting him to fit into a mold that society has built
up? I wouldn’t care if he didn’t fit in
because of his fashion sense, sexual preference, music tastes, philosophical meanderings,
so why does the Autism make me want to work so hard to “correct” it. Why not let him be and accept? I don’t know right now, but it’s something I
want to think upon further….
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