Thursday, April 2, 2015

World Autism Acceptance/Awareness Day, through my own Janey lens

Well, here it is again, that day that I am sure is like Christmas for all of you out there---World Autism Acceptance/Awareness Day!  All sarcasm aside, sometimes I'm a little glad there's a day of the year set aside for autism---a day that is about what every single day is about for my family and me.

I thought I'd write about Janey's afternoon yesterday.  It illustrates the best and the worst of how autism affects Janey, and therefore affects our family.

Pictures I took this morning of Janey
Janey got off the bus in a fairly cheerful and mellow mood.  She was happy to find some chips to eat, and we had a quiet and companionable half hour as she ate them next to me.  Freddy got home then, and Janey was happy to see him.  Her hands were covered with chip dust, and he said if she washed them, he'd take her to the ice cream store, as she had asked (as she asks every single day after school).  After a few reminders, she washed them like a champ, and he kept his promise and took her to the store.  They both came back in great moods.  Freddy remarked on how very good she was, and how much fun they had.  The ice cream store (as most of you know, actually a corner convenience type store) is only a few houses and then a few businesses away from us, on the same side of the street, and now as we pass our neighbors' houses, we no longer have to hold Janey's hand.  She loves that---she skips along singing.  We take her hand again by the gas station, as Freddy did yesterday.  It was great seeing what a good time they both had, and Janey ate her ice cream happily.

A nice moment before they left---after Janey washed her hands and Freddy told her he'd take her to the store, she hugged him---her full-on, somewhat overwhelming hug.  Freddy was quite touched.  She is gradually showing more and more of an interest in her siblings, and it was really a nice moment.

Taken within three minutes, they show her changing moods.
So---great afternoon, right?  Well, then it took a turn.  Janey decided to graze the refrigerator for something more to eat.  She found raw turkey meat.  Freddy caught her in time and told her to put it back, and when she came over to sit by me, I said "Janey, you know we never eat meat that hasn't been cooked"  Evidently, that was something she found unacceptable to hear.  She hit me on the nose, very hard.  I grabbed her hands and said "No you don't!" and she lunged hard at me, trying to bite me with all her might.  I yelled to Freddy for help, and he carried her away to a chair and held her back as she tried as hard as she could to bite him too.  Being unable to do that, she kicked over a coffee table by the chair, with Freddy's afternoon coffee on it.  It spilled all over the floor.

Freddy told her, very calmly, that she needed to clean up the coffee.  And so started the 20 minute siege.  She was not inclined to clean up the coffee.  She wanted instead to bite Freddy.  He stayed calm and insistent, telling her to go get the paper towels, which she finally did, after about three biting attempts.  Then, again interrupted with many, many lunges at him, she very, very slowly did clean up all the coffee and threw away the wet paper towels.  By the time that was over, we were all exhausted.  Janey got her iPad and sat quietly and cruised YouTube.

It's not all smiles, so we take them when we can!
And that is Janey---albeit, a rather extreme example of Janey at her best and worst.  That is what we are aware of every day.  That is what we have leaned to accept.  Sometimes it's very easy to accept Janey.  Sometimes, it's very, very hard.  And as I talked about yesterday, accepting doesn't mean liking always, or not liking, always.  Sometimes it means adoring.  Sometimes it means despairing of.  But if I could tell the whole world about autism, I would like them to understand both sides of it.  I don't want a gauzy unicorn and rainbow filled fantasy autism image.  I don't want a horrifying, Autism-Speaks-Style tragic view of autism.  I want people to know Janey, and to know all of your girls and boys, all the many, many faces of autism.  I want them to know the stories, and to know the children we love so much.  Janey, this day is for you.  I love you so, so much.


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