Autism

The Amazing Barking Bean

Bean hasn’t been very well this week. She seemed a bit low at first, sleeping more, playing less, regressing in some of her behaviors. Then the coughing started– deep, wet, angry coughs that leave her exhausted and whimpering. That wake her (and us) up at night. That make us both stop what we’re doing when we hear her, to make sure she won’t vomit anything up.

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This morning, the fourth day of the Cough, T. took her to the doctor’s office. The kindly pediatrician asked Bean how she was feeling. T explained that Bean isn’t super-verbal, owing to the autism, and the pediatrician looked at her notes, flummoxed. There was nothing about autism in E’s notes at our GP’s office. That could be read as a sign that:

  • The Worcestershire authority that evaluated Bean did not communicate with the Birmingham authority in which we live;
  • Bean has hardly needed the doctor in her five years of life (at least not since her debut).

We’ll focus on point two, because we like to stay positive around here. Anyway, she now has an updated file down at the GP’s and an amoxicillin prescription. She went to bed with much less barking tonight– though she had lost her voice, and sounds like she’s been smoking 20 a day since she was capable of holding her head up. We’ll prop her up outside tomorrow and see if the sunshine helps the healing process.

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If that doesn’t work, there’s always ice cream.

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Beginnings of Word Play

Wordplay and weird jokes! They are dear to my heart, and my husband’s. Our lives are basically endless variations on this scene:

I’ll leave it up to you to decide which of us is Inigo and which is Andre the Giant.

While there are so many wonderful and precious things about the Bean, it has been hard on us sometimes that she is limited in her ability to use and understand language. Don’t get me wrong, the things she says are frequently hilarious, but it’s mostly unintentional. She twists up her sentences and scrambles her syntax, and it’s really hard not to laugh when she’s bellowing at you:

“Mommy is a nappy-poo! I am angry-mad Evey!”

 

I'm a Tigerrrrrrrr

I am a scary tiger!

However, we think there are glimmers of hope. On a recent car journey, Bean was in the back, happily singing about the Gingerbread Man. You know:

Run, run, as fast as you can

You can’t catch me, I’m the Gingerbread Man!

She is big on repetition, and she repeated this, I don’t know, several dozen times– we learn to let it wash over us. Then she started riffing:

Run, run, as fast as you can

You can’t catch me, I’m the Banana Man!

Trev and I both laughed and praised her. Then we tried to get her to do a bit more: Ice Cream Man! Sausage Man! Fish Finger Man! She told us we were silly, or that we were too noisy, and to “stop talking now, please.”

So we lapsed back into silence. After a few moments, she started up again:

Run, run, as fast as you can

You can’t catch me, I’m a Biscuit Man!

We’re going places, people.

Eye of the Tigrrrrrr

Well, it’s 2014. And my posting on this blog in 2013 led a lot to be desired. I have conducted an investigation into the reasons for my lack of posting, and can present the following statistical breakdown of factors contributing to my underperformance:

  • 42% – Health issues
  • 18% – There was something on TV/ Pure laziness
  • 23% – Work deadlines
  • 17% – Moral qualms

Let me explain the last one.

I'm a Tigerrrrrrrr

I’m a Tigerrrrrrrr

Ever since the Bean’s diagnosis of autism, I have begun to worry that keeping this blog constitutes an invasion of her privacy. Well, not worry, but to stop rationalizing to myself that somehow it isn’t an invasion of her privacy. As she gets older and begins to have strong opinions about things (e.g.: “I don’t eat carrots. I am not a rabbit.”), it occurred to me that she might someday object to my writing about her on the Internet. This blog has never had more than about 200 unique readers, so it’s not as if she’s being broadcast to the entire world, but as it is out there online it is conceivable that someone, someday, might read something and embarrass her somehow with the information. Or, in an age of technologically-savvy stalkers, do worse than embarrass her.

There’s also an awareness of hypocrisy on my part. I’ve often scoffed at the kind of parents who treat their children like designer purses or pedigree dogs, to be shown off everywhere. Is what I’ve been doing with Bean much different than that, really? Many Americans are brought up in an environment that turns them into frustrated celebrities and compels them to use their offspring as bait for attention. So I worry that I, as a frustrated writer, am using my offspring as bait for attention to my writing.

Maybe I’m overthinking this. Maybe re-activating the blog would please my family, or maybe it could help me connect with other parents who have autistic children and so expand our support network.

You tell me.

Hiding Her Light Under a Bushel

“Oh, I’m Bean. I have autism. My fine motor skills are soooooo undeveloped. I don’t like holding a pencil or a pen or anything like that. Sure I write my name’s letters sometimes but I’ll feebly clutch the pen like a dead bird when I do it and I’ll give up halfway through the second E because it’s just all a bit much.

But you know, sometimes, maybe, while you and Dad are watching a baseball game, I’ll just grab a crayon and whip out an entire rabbit person, with irises and pupils and everything, like this:

This is Lau-Lau from Waybuloo. AS IF YOU DIDN'T KNOW.

This is Lau-Lau from Waybuloo. AS IF YOU DIDN’T KNOW.

“Because I’m Bean, and autism or not, I do WHAT I want WHEN I want and HOW I want. Get it through your pointy heads, chromosome donors.”

You guys, she drew a picture! I am so excited.

Jolly Old St. Nicholas

I’ve been thinking deep, profound thoughts about Santa Claus. No, really, come back.

While I am all for holiday cheer and celebrating Christmas, I can’t help but think that the entire Santa thing is sort of… well, a lie we’re all foisting on children. I’ve always been kind of ambivalent about whether I would go in with the Santa thing when I became a parent. I figured I would play it as it lays.

However, now that we have the Bean, it’s not very obvious how to handle this. For the first time this year, she’s really excited about and aware of Christmas. We have our advent calendar, our wreath on the door, our mistletoe sprig and cuddly St. Nicholas Day reindeer (thanks, Grandmama!) on the mantle. We are putting the little ornaments on the advent calendar tree every morning, and counting the remaining sleeps until Christmas.

Mistletoe looks better in a vase!

Mistletoe looks better in a vase!

To really drive the point home (and because I like bratwurst) yesterday I took her on a Mom-only outing to the German Christmas Market in town. Continue reading

Bossypants

Despite her communication issues, the Bean manages to make herself heard when it really, really counts. Meaning when she wants you to do something. I noticed this over the summer, when Bean was at the beach with Aunt Joan. They were digging in the sand with a plastic shovel, and there was a collection of plastic animals that Eve would take out of a bucket and line up carefully.

Aunt Joanie decided to make one of the animals swim.

“No,” said Bean, in a tone of voice adults reserve for the very simple. “You put it back, Joanie.” And she grabbed my sister’s arm and forced her to place the animal back where it belonged.

Bucket dictatorship.

Continue reading