Sundowners

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. 

A couple years ago, a New Jersey woman (I think) filmed how she calms her full grown autistic son while he’s having a meltdown. Twice her size, he was swinging his fists and banging his head on the ground. At first, seeing a parent physically sit on her child it’s easy to scream child abuse, but looking at the big picture, she did what needed to be done and no doubt later, she cried.  I applaud her for doing that as it paints a very realistic picture of what parents go through, with no fuzzy ending.

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.