For the past couple of nights, Evie seems to be going
through the Autism equivalent of sundowners. She’s sweet during the day,
happily stomping around the house doing her own thing but after five, little
Miss Hyde comes out. Dinner can’t be cooked fast enough and nothing can be done
to keep her happy for even twenty minutes, making for twenty minutes of pure
hell. (1200 seconds if you were wondering.)
She doesn’t scream per se, it’s more of an intermittent
whine or stuttering cackle of varying decibels, something like those mandrake
things in Chamber of Secrets would do before they let out the blood
curdling
scream requiring earmuffs. While she’s doing this, she’ll move from myself to
the hot stove with ceramic shards sticking out of it, to the fridge where she
tries so hard to open it, shaking the appliance in the process. I’ll get her
some milk, she’ll take a sip then throw the cup, spilling whatever leftovers
everywhere then start again.
It went on for almost an hour tonight. At one point I had
thought of filming it, but ultimately couldn’t. There are a couple things about
autism that bothers me. The notions that 1. They’re all the same-that because your
neighbors brothers kid has autism you somehow know what we go through and 2.
All the happy feel good stories about autism; “Car wash employs autism only workers.” and my personal favorite “Autistic girl competes in beautypageant.” (yeah I'm calling bullshit on that one.) Don’t get me wrong, I see some
benefit from sharing such stories but it’s not real. Not for the majority of parents
with severely autistic children who can’t do such tasks. Instead of inspiring
they make you realize what your kid can’t do.
I didn’t film Evie because, ultimately she isn’t that bad. Yes even being
completely non verbal, screaming, pulling with all her might to open the fridge
(doors are secured with a dog collar), screaming, dumping milk everywhere,
screaming, not sleeping at night, screaming, and being unsafe on playsets she
doesn’t get physically abusive which from what I understand is practically
unheard of in a non-verbal/non-communicative child. I don’t know, maybe I
should have. For empathy perhaps? Showing the interwebs my daughter isn't always sweet? I don’t know.
What I do know is over the summer she’s beginning to be more
physically difficult in other ways. Since she is too long for the bathtub, she
wont lay down. We don’t have a sprayer hose (thanks to her extremely active and
imaginative older brother) which makes bathtime very difficult. Attempting to maintain
good body mechanics is near impossible
when trying to keep a 7 year old kid in the bath. I still have to pull her out
of the car and she’s staring to realize, if she death drops to the ground when
her sibs try and bring her inside, they stop and she can run off. This leaves
my husband or I to carry her in. For the past month or so I’ve started to get
really bad back aches. I thought maybe it was due to not rotating my work shoes…
And sleep. For a while she was sleeping through the night but now she’s back to
being up laughing, playing, hosting Evies dance party, party of one from 3am
till 6am. People wonder how I can work night shift. It’s because I get the best
sleep during the day since Evies awake and out of the room.
I don’t know if she’s just getting older or she realizes
that she wont be going back to her school anytime soon. Yes that school. The
school we moved here for and essentially sacrificed the well being of another
child for in moving here. Her schools program is changing due to fiscal reasons
and although ultimately it’s for the better, unless your insurance covers ABA
(the only evidenced based treatment of autism) the monthly cost is
unmanageable. Of course here in Utah, location of the highest rate of autism in
the country, the major Utah based insurance company doesn’t cover AB, now giving us a slew of new hoops to jump through
with the slight chance she’ll still make it before January.
In the meantime, she’ll be at home. Yeah we could put her in
our local school but then it just brings it all home that we basically came to
Utah for nothing. I know I need to have more faith things will work out but I’m
tired. I’m exhausted. My family is exhausted and positivity seems to be a rare commodity
that takes much longer to replenish after being used nowadays.
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