Jonah’s doing really well, aside from his word perseveration (cycling through nonsensical requests and phrases with conflicting messages). Sometimes I think we should wean him off his meds and see what happens. And that’s just what it feels like it would be – a roll of the dice, the spin of a roulette wheel. Jonah’s not a chip in a poker game. We’ve got to be as sure as possible that we’re doing the right things with his meds, and there’s no surety in it whatsoever.
It just seems to me that the meds might be causing the perseveration. I keep thinking someone somewhere has got to be close to developing some kind of brain surgery to repair or regrow affected parts of the brain. Like in Elizabeth Moon’s The Speed of Dark: Lou, the high functioning protagonist, must decide whether or not to undergo a procedure to make him “normal.” Lou’s decision surprised me, and the whole book opened my eyes to the struggles that people with high functioning autism face.
Autism can bite me.
Andy and I got Jonah’s 4th quarter report card today. He’s working on things like taking an object and following directions to bring it to a named individual (maybe down the hall and around a corner), first stopping to knock and say “here,” probably — that’s likely the most they’re going to get out of Jonah — and then return to the classroom, having delivered the item. I guess this kind of thing is where Jonah shines.
He remembers building layouts, street patterns, directions, etc. very quickly with a seemingly innate sense of where he is in the world. And he also learns and recalls names, so he’ll get an A in Interoffice Communications 101. (Actually, there are no letter grades. Just 1-4, indicating how far along the student has come to reaching his/her goal in all kinds of specific things). So this is Jonah’s forte.
I see mail delivery of some sort in his future. Probably not the U.S. mail, but maybe he’ll be some interoffice Übermensch mail sorter at Microsoft.
I forgot my camera last Saturday, so no new pics to share. Last week the guy who seal-coated my driveway came back to clean out rubble, wood, & junk from when this other dude built my porch and left me with all the scrap. I hired him because he gave me a great deal on the driveway, didn’t charge a lot, and was cool besides. So the guy arrives and I give him leave to go through my garage.
He comes to the door a little bit later and he’s got this strange look on his face. “All set?” I ask him. Uhmmm…Welllll….he mutters, obviously not wanting to say.
Then he’s out with it: “Do you, um, collect squirrels? Or bones?”
I look at him like he’s crazy. “Wait. What?”
“There’s a pile of squirrels in your garage,” he tells me.
“Auuggghhhhh!” I yell like a Peanuts character, my whole body shuddering. And then: “You jerk! You thought I was a squirrel collector?” I start laughing, and so does he, and I explain that it’s my damned serial-killer cat, Almanzo. My garage door is manual-only and since Manzo’s a nocturnal critter, I let him out at night and keep about a foot of the garage door open so he can take refuge as needed. He must have been ~gag~ stockpiling squirrels, for the love of God.
“How come I didn’t smell them?” I ask.
“Oh, these are waaaaay past smelling,” he says with confidence.
Finally I request he show me, feeling like I was going in close to look at a car wreck or a deer shot dead. So he pushes aside a few lawn & leaf bags and sure enough I notice two, uh, pelts right away. That’s all I needed to see. They’re gone now so good riddance to my pile ‘o’ squirrels.
I’ve had killer cats before but not serial killer cats. I named the damn cat after an incredibly innocuous historical figure, for God’s sake; Laura Ingalls Wilder’s husband, Almanzo.
I’m missing Boo a lot but I get to see him tomorrow and I’ll be sure to bring the camera. In my pictures folder I found all these videos of Jonah. Here’s one I don’t think I’ve ever shared:
I should mention my new boyfriend, T, who lives in Bloomington, Indiana – a city so cool I never thought it could possibly exist in the Midwest. We went to high school together, were in a few musicals and in chorus together (though he was also in the elite “select chorus” of the most stellar voices), and had been chatting on Facebook for some time. I decided to drive out, kind of on impulse, to see if what we were feeling would translate to reality, though I really had no doubt.
The week was amazing. The city felt like home. We fell even more in love. So now I live alone with my long-distance man. He’s coming to visit me in three weeks, and then I’ll fly out to him in early December. In the meantime I swell with pride, as if I manifested him – for he is, among other things, a night shift direct care giver to adults with autism, those just like my Boo but older. On more than one occasion T has had to hold a resident in his arms all night during seizure after seizure, keeping his composure and offering compassionate care, no matter how tired he is — and he’s often very tired, as he puts everything he’s got into everything he does.
He’s also a geography professor, a bass in the men’s choir (though he’s got more than a 4-octave range) and the lead singer in a (mostly 80s) cover band, Don’t Call Me Betty.
I was trying to describe T to someone the other day, and I wrote:
I feel as though every tiny decision I have ever made in my life has led me to this sweet, loving, poetic, vulnerable, forgiving, brilliant, dedicated, sacrificing, fun, kind, honorable, humble, handsome, trusting, tactile, silly, singing, strong, self-aware, magical rock star king of a man. I’m grateful beyond words to have found him.
I kept going back and adding adjectives until it turned into the overly effusive paragraph you see above. I am of the ridiculous and I am in love!
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I’m glad Jonah is doing well and that you are so happy lately. It’s so nice when things are calm 🙂
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Enjoy every lovely, and loving, moment!
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I am happy that Jonah is happy and doing well and that you are happy, too.
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You, my dear, are a woman on cloud nine. Remember these feelings, so you can get them back any day that you might need them. I am gloriously happy for you, and Jonah can work in the mailroom for the State. Good pay AND a pension. Something I don’t have! ❤
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AND for Amanzo!!
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Darn it! I had a picture of a squirrel in armor for you. I’ll send it via email
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My daughter was doing her perseverative talking in the shopping cart one day. A young man in dreadlocks asked me, “What’s she saying?” I responded with “She has autism. What she says doesn’t necessarily have to do with what’s around her.” He said, “I bet it is. We just don’t know it.”
I should have told him “Then where is the hammered dulcimer?” because that is exactly what my daughter was repeating, as she had heard it on Jack’s Big Music Show.
At least he didn’t give us dirty looks for my daughter being loud. If dirty looks cured autism, we’d be somewhere now.
You are such a good writer. So poignant at times and so funny other times. I am so happy you have such a nice person in your life who cares so much about you. Thank you so much for this blog.
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Ah, good to hear you are so happy and Jonah is doing well. One day, someone somewhere will find the key and unlock the brains of all those on the spectrum I daresay. What characters they will be and will we all suddenly realise what has been going on with them all these years? My nephew with Asperger’s and other disabilities, continues to make me laugh and sigh in turn but he lives on his own, with support, and has become incredibly polite of late. “How are you, Auntie Debbie?” he asks when he phones. He’ll be 32 this Christmas. His latest ambition is to buy an ambulance so he can start a mobile BBQ business (ambulances have lifts in the back so he can raise and lower equipment). Before this, he wanted a Hearse. His house resembles one of those seen on TV in “Hoarders” but he thinks he will come to stay with us for Christmas this year. My sister and her husband would be quite proud of how he (and we) have coped without them I am sure. I don'[t always comment but I do read your posts. Thank you Amy. 🙂
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What a well-written post! I love That Jonah’s school is meeting him where he’s at on his goals. It seems like delivering an item to someone across the school will be a perfect way to him to show off his strengths in navigation! I just came across your blog, but I love the way you write. I can’t wait to read what comes next! Thanks for sharing!
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