Today was a doozy of a day. I'm sitting here, at 12:30am, early Sunday morning, and I'm wondering how it was that this day turned out to be so difficult. I mean really, really, bleeping diffcult. My darling daughter had what felt like a million meltdowns today. The last of which ended up with her hitting herself over and over again in anger and frustration. There was lots of screaming. I mean the-neighbours-are-going-to-call-the-police kind of screaming. Thank goodness our bodies are designed to sleep, because it is the only quiet we've had all day.
Oh, how I love her, but oh, how hard it was today.
On a brighter note, I found a colour of nail polish today that I love! Sally Hansen's "Plum's the Word" (I mean, hello, how cute is that)? I never do my nails - this is the first time in years that I have put nail polish on - but this weekend I just felt like having painted nails. I tried three different colours before I finally found "Plum's the Word". That's a helluva lot of toxic fumes wafting through the house. But, I love the colour and it was fun. Pleasure in small things, and all that.
As many parents of children with Asperger's could probably tell you, Asperger's children are very inflexible. They want things done their way, and they want things done in the same way. All the time. And this inflexibility includes planning for the day as well. If I say we are going to do something (or not going to do something) and the plans change, it throws A off, and completely ruins her day. It is so difficult for her to adapt to changes once she has things set in her mind. Which in turn, makes it difficult for us. So, we've learned to be very careful with how we word things. Instead of "we're going to the grocery store today" we might try to say "we're going to try to make it to the grocery store today." But then of course we find A following us around all day asking if we're going to make it to the grocery store. Uncertainty, too, causes her anxiety.
So, how much inflexibility do we allow? There are many days where it is impossible to stick to the original plan. There are too many factors to consider. Time. Weather. What if the car breaks down? What if someone is sick? What if the dog is sick? What if the store closes before we make it there? Once, we planned to go swimming, and the pool had to unexpectedly shut down because of a contamination issue. Nothing is certain. And that drives A crazy. And isn't it important for her to figure out a way to adapt to unexpected events?
There are days where the meltdowns are too much for us to handle, and you'll find us bending over backwards to make sure all goes as planned. Today has been one of those particularly difficult days. I've been very frustrated most of the day, and of course so has A. I felt my own meltdown coming, when suddenly I found A sitting at her work table crying. Not because something unexpected was happening, but because the dinosaur she was drawing didn't look good (to her).
Another thing many parents of Asperger's children can tell you: our children can be perfectionists. Which means they can be so hard on themselves. A was beside herself over her drawing. And I heard these heartbreaking words spilling from her mouth:
"I'm the worsest girl in the world."
"I'm the worsest drawer in the world."
"My pictures never look real. They're the worsest."
"Everyone is better than me at everything."
"Do you even still love me?"
Granted, the last question was probably because she could sense my mounting agitation with her as the day wore on, but it was all too much negative energy for a six year old girl. We chatted and talked about being proud of our work, and being proud of whatever it is that we accomplish. She eventually claimed to understand what I was saying, but I know she won't put it into practice. For this is the 1000th time that we've discussed this.
So, someone tell me that she will get better with this. That all the "stuff" that Asperger's children have to deal with in a day will get easier for them. That she'll find ways to adapt, and be more flexible. That she'll be flexible with herself and not expect perfection out of herself, all of the time. That every day won't be so hard, and won't be such a struggle.
We're forcing her to adapt to the world, but is it too much to ask the world to bend a little for her? Shouldn't we all do a little bit to make the world easier for those of us who are different?
In the meantime, A's masterpiece: a beautiful striped pterosaur that I fished out of the garbage and uncrinkled.
We spent last night in the emergency room at the Children's Hospital. Poor little A was in so much pain, and was dehydrated, so we gathered her up and went to make sure there wasn't anything else going on.
Turns out it is probably a virus, but because she was in agony, and because she couldn't keep anything down, the doctor decided to give her some anti-nausea medication, followed by a little morphine to take the edge off her pain. Boy, did it ever work. Within seconds (really!) she was smiling, and totally comfortable. And a little bit high. 2:00am in the emergency room, with an IV drip in her hand, our little girl started rambling. She couldn't stop talking about everything in the room as though she had just walked in. She was hissing like a snake because there was a picture of a snake on the wallpaper that just enraptured her. It was, apparently, the best snake ever. She talked about how she could see things on the left with only her left eye, and things on the right with only her right eye. She hissed some more. And she rambled on and on about I'm not sure what. It was hilarious. And because she was finally comfortable and not nauseous, we were all happy. And many snake hisses later we were home. And she was still high. She thought it was raining in the kitchen, and after I assured it all was dry, we all headed off to bed - hissing.
She had a fever most of the night, but altogether today is a better day. No throwing up, but still a lot of tummy pain. And because the thing that upset her the most about all of this was that we didn't get Thanksgiving dinner, I am making it today. She will eat what she can, and she will be happy. Because mom and dad can't bear to watch her cry anymore about missing Thanksgiving. Anything to make a sick girl smile.
Several birthdays, several dogs, kindergarten graduation, and parvo for summer = no blogging. It's been a crazy last several months! A quick recap of spring/summer 2011.
First, the heartbreak of April 2011. We decided to get A new puppy. Daisy, our 10 year old maltese/poodle just wasn't keen on the idea of hanging out with a small child. We got an adorable little Labradoodle we named Cooper. Six days later, Cooper passed away from canine parvo. There is nothing worse than a six year old with a broken heart. But in those six days, we all fell in love with the little guy.
Fast forward to May 2011. We did everything we were supposed to do. Bleached absolutely everything in the house (I even bleached the lawn!) bleached the car, and got a new puppy. A FULLY vaccinated puppy. Fully vaccinated puppy = can't get parvo. Well, for whatever reason, the new puppy still got parvo. Vets can't explain why. But, thanks to the help of a wonderful breeder, Finnegan came back home to us after an extended hospital stay. He is perfectly healthy, happy, and a loved member of our family. Here he is sunning himself.
Fast forward to June/July 2011. A graduated from kindergarten. Yay! We celebrated by getting sick! Boo! A few days after the last day of school, I got Fifths Disease. Apparently I didn't get it as a child. Fever, chills, rashes EVERYWHERE, dizziness, and painful, swollen joints. This lasted weeks. And during the course of these weeks, A caught it from me. There goes July.
Fast forward to August 2011. We're all healthy - yay. But, now A is having anxiety about starting grade one. Most of August was spent trying to comfort her, and let her enjoy what is left of her summer. Best day ever happened in August though. Trip to Drumheller to the Royal Tyrrell Museum, followed by hours of water fun at the Drumheller dinosaur water park.
Fast forward to September/October 2011. A starts grade 1! We are muddling through, and she is learning so much. And here we are on Thanksgiving Day, October 2, 2011. We were all looking forward to brown sugar glazed ham, macaroni and cheese, asparagus, scalloped potatoes, and apple pie. But none of that happened. Nope. A has the stomach flu instead. Fever. Chills. Nausea. Vomiting. And a whole lotta discomfort. So our Thanksgiving feast will have to wait. Hopefully tomorrow!
Happy Thanksgiving!
