Waiting for a Break

Since November, it seems as if I have a really difficult time writing. Anything. I’ve been working on my second round of edits for one of my novels since April, and so far… Well, let’s just say I haven’t gotten much editing done, let alone blogging.

To be fair, I’ve had some things to deal with, and sometimes, when my feelings and focus are elsewhere, and it’s still really difficult to find the time to write, it starts to feel like a chore, and that is not what I want. So I give myself a little break. Tell myself, “When this passes, we can start again.”

Except that this year, when something bad happens, it has been immediately followed by something worse. Or so it has seemed. I am in a constant state of regret, thinking back to the previous crisis and thinking, “That wasn’t fun, but it’s nothing like what I’m dealing with now.”

Anyway, home is not a terribly comfortable place right now for neither The Boy nor I. The Man is struggling with some emotions, and due to old habits and behaviors, is not dealing with it constructively. And The Boy and I are struggling to stay above it, live our lives as “normally” as possible, and dig deep for patience within ourselves. We’re kind of living “in limbo” waiting for The Man to realize that we are still here and we love him.

Please pardon my absence here. I miss blogging terribly, and maybe someday I will be able to blog through the struggles. Right now, I can’t. But you can sit and wait with me, if you’d like. It’s always easier with friends. 🙂

Tracking

A big component of my plan to start a planner of sorts for The Boy is tracking. I would like to track several things like his diet, his moods, and the-results-of-his-digestive-system-if-you-know-what-I-mean.

In fact, I’ve already begun tracking something that has given me insights. If you’ve spent any time on this blog in the last couple of years, you know that emailing me has become a calming strategy when his anxiety gets the best of him at school. It came from a bit of self-advocacy, and it has worked well. The number of emails I get in a day also correlates to the “quality” of the day: more emails means more anxiety and less learning, fewer emails means less anxiety and more learning. It’s a loose correlation, but it’s there.

In prep for our meeting with a new therapist tomorrow, I went back through my emails since the beginning of the school year and did a simple tally, putting it in calendar form. Just that simple act allowed me to see…

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Whoa. Mondays have been a bit of a problem! I would do well to work more at home on Sundays, preparing him for the transition back to school, it seems. Wednesdays seem pretty chill, and then the anxiety comes back on Fridays, I’m guessing when parents pull his friends out of school for the weekend… Wish I had done this sooner, but at least there is benefit in the tracking, and I have high hopes for my planner.

Biting My Tongue

My fingers are itching. Itching to write a response to an email. I’m refraining. It’s a Herculean task, but I’m managing.

After two days of just trying to keep my kid in the school building due to his raging anxieties about the absences of his teachers and friends, I get an email from the-special-ed-teacher-who-has-no-clue. “Up until today, he has consistently missed class since spring break due to stress,” she writes. She says she and the aide have been “unsuccessful in getting him to complete anything in class.” She ends with, “Please continue to encourage him to come to class and just do his best. I keep reassuring him he will not fail class as long as he is showing up and doing his best.”

Have you seen the funny videos where husbands and wives text each other, but you get to see the various things they’d like to text before they are deleted and something more appropriate gets sent?

Yeah.

“Damn skippy he’s not going to fail…”

“Do you even know what fight-or-flight is?…”

“That’s right – YOU’VE been unsuccessful…”

“HE HATES SCHOOL BECAUSE OF YOU…”

“Do you even have a working definition of autism in your tiny little brain?…”

Nope. Nope. Nope. Can’t send any of that.

That’s why my fingers are itching. She’s gonna be my kid’s teacher for another 3 years and 22 days.

Not gonna reply.

Heaven help me.

Planning for Parents

I know I’ve talked a bit here about planning. It’s become a bit trendy nowadays, but I have needed and used a planner since my undergrad days, with rehearsals scheduled thither and yon, and assignments due; as my husband says, “people to see, things to do, and dogs to scratch!”

That said, figuring out how to organize all the parts of my life – it’s still a challenge. I’ve been bullet journalling since November of 2015, and found that it really works for me. I’m much more able to keep track of when things are due, upcoming events, and even tracking how often I do x, y, or z, which can come in very handy when I’m, say, working on a goal to read more, or exercise more, or be a better human being.

Recently, I’ve decided to track my moods, as well as the moods of those in my household, as their moods have an effect on my mood (as I’m sure you’ve experienced), and also because I’m getting to that age where moodiness is part and parcel of being a woman and all of the lovely things we go through that bewilder the men in our lives. I realized tracking “moods” would be an excellent thing to do for The Boy, and would help us spot some triggers. The more I thought about it, the more I liked the idea of setting up a “home base” journal for The Boy: notes from meetings, school schedules, records of emails from him (a strategy he uses to regulate when he is upset at school), “hang-out” dates, progress on our Independence Challenge, and plans for the future. Now that we are tracking work and volunteer hours for his high school program, this journal will be perfect for that, too.

Some planning friends suggested that, ideally, The Boy would do this for himself, to which I replied that just getting him to do homework was like pulling teeth, but I think I can find some common ground by letting him know I’m doing it, and allowing him to see, add or change things as he feels the need.

I found this excellent resource for autism parents of any age that would like to do something similar over at andnextcomesl.com – a site that’s new to me, but looks like a bevy of great resources.

When I get it set up and operational, I’ll make sure to come back and share what’s working, what’s not, and how it’s helping me be a better parent (I hope!) 🙂

 

Why I Love That The Boy Plays Video Games

This past weekend, The Man and I took The Boy to Myrtle Beach for a mini vacation. Overnight, to be exact. We hadn’t been in a long while, and there’s just something about it that we adore. Grammy and Poppy had already made plans to go down for a long weekend, so we hopped in the car on Saturday morning and were on our way.

As The Boy has grown, he has developed a deep and abiding love for Myrtle Beach because of the overabundance of arcades. He has found his favorite games in several arcades, and indeed, we spent a good portion of our time Saturday following  him around and playing a little ourselves.

One of his absolute favorites is Galaga, a throwback to the 80s. And I love watching him play. You may think it a bit odd, that one of the things he does that makes me proudest is play an old video game, but here’s why: he wins.

He does well, he has developed his own insanely smart strategies that I’ve never seen anybody use in that game or elsewhere, and he often gets his name on the high score board as a result. And if he doesn’t, he’s completely ok with it, and has no real sense of failure.

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What can we take from this? Predictability helps him learn and develop strategies. The norms of video games (that you learn by doing, over and over again) allow him to learn and develop at his own pace. And by giving him just those two pieces, he has a high level of success.

One of the most-shared autism memes goes something like, “I wouldn’t change you for the world, but I would change the world for you.” We get a lot of resistance sometimes when we ask for modifications and accommodations. But two simple structures in place in that game are all it took for The Boy to become an expert, devising complex strategies and showing actual results. This is why we fight to get what he needs.

Reasons Why & Moving Forward

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Why haven’t I been posting?

At first it was because I was working hard on my novel, because writing is my thing – the thing you would do if you won the lottery and could do anything you wanted? I know, counterintuitive that I stopped writing to pursue writing, but time, man. There just isn’t any when you work 9 to 5.

Then it was the election. I shook with fear as the results rolled in, and my fears were not unfounded. This country is really going in the wrong direction (to put it much too mildly), and this election will have direct, negative impacts on my family, the most important of which are threats to The Boy’s future, and the safety nets that are supposed to be there for him.

And then the horror that is second semester, freshman year tiptoed up behind us, tapped us on the shoulder, and whispered, “Surprise!”

I’ve said before that we have been quite lucky since The Boy was born. We’ve had many good teachers, and wonderful members of our tribe support him in such a way that even though he has his moments, we have not experienced anything “severe.” Until now. And I’ve hesitated to write about it, not because I want you all to believe we live in some fantasy land of “easy-autism”, but because I didn’t want to invade The Boy’s privacy. I know I wouldn’t like it much if my mom had a blog and told the world about all of my problems.

So we’re struggling. I’m struggling. Mostly underneath the surface – we manage pretty well most days. But there are some days where my fears and anxiety about what is happening with him (and his fears and anxiety in general) make it difficult to function. It can be paralyzing.

In honor of this month of Autism Focus, I’m coming back. And I’m going to share with you what we’re going through as best I can without oversharing.

We still have beautiful moments. Yesterday, The Man was putting some pavers down in our yard between our new porch and the driveway, and I watched The Boy fill a wheelbarrow with sand, push it across the lawn and dump it like he’d been doing it for years.

And then this morning, he rampaged through the school office, tearing two plants to pieces, pushing books off a table, and overturning a chair.

This is autism. How do I deal with it?
Simple. I Just Do.

Soon, Friends

I know it’s been quiet around here. I’m sorry for not posting for so long. But as many parents, and especially special needs parents will tell you, there’s only so much of me to go around. I’m desperately trying to finish the first draft of the novel I began in November, and I am mere paragraphs away. Then I can allow myself to get back to my regular routine of writing in multiple spaces for multiple purposes.

 

I have much to share if you’ll bear with me a little longer! ❤

Money Matters

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We have rekindled our love for independence skills!

A couple of weekends ago, The Boy and I knocked out a whole bunch of our remaining tasks from The Independence Challenge we started last year in one fell swoop by planning, shopping for, preparing, cooking, and presenting a meal to Grammy, Poppy and The Man. With help, he made a big pan of baked pasta with meat sauce, salad, and bread. By the end of it, I could tell it had been taxing to stay on task for so long, but he had been a trooper.

Last week, we sat down with some fake money I had purchased on Amazon. I printed up some imaginary bills from a cell phone company, the cable company, a car finance company, etc. and we sat down to talk about money. I gave him a paycheck for being a professional tuba player (his choice of career), which he exchanged for dollar bills. I presented each bill, and we counted out the bills necessary to pay them. I kept remarking about how much each bill seemed to take from that big pile of money. When all the bills had been paid, there wasn’t much left, and I reiterated that that was why you couldn’t just spend what was in the bank willy-nilly.

We also discussed which bills were absolutely necessary and why. “You have to pay for your car so you can get to work,” he said. Exactly. “But maybe you can reduce your phone bill by not using a smart phone or something if the bill costs too much,” I explained.

He seemed to understand and enjoy the exercise. Again with most of these activities, these are just an introduction, but it gives us a basis for further exploration. And this one may be the end of the notion that I can just go to the bank to get more money to buy a new computer 😉

Community?

I was made fun of on one of my favorite autism FaceBook pages last night. By a commenter, and the page owner, an autism mom herself. All for stating I didn’t support a man who made fun of the disabled.

When you normalize a man who belittles and berates anyone who disagrees with him, I guess this behavior is to be expected.

What’s sad is that the autism community has not rallied together in defense of the strides we’ve made in healthcare and education. It seems we are even more divided than before, to the point that I’m not sure a community still exists.

I try to remain hopeful for the future. I try to tell myself that this too shall pass.

The question is, what will remain when it does?

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When in Doubt

The Boy is now a full-fledged teenager of fifteen years old. As such, he has begun to take extraordinarily long showers, as I’ve heard teenage boys are wont to do. Because The Man pays both the electric and water bills, however, this budding habit has caused a bit of a household rift every other day or so.

“When’s he getting out?”

“I can’t see through the door.”

“He’s been in there too long.”

“What would you like me to do about it?”

Etcetera, etcetera, etcetera… *sigh*

Last night I fell back on one of my key rules of parenting: When in doubt, try bribery.

I got The Boy to agree to a 9:00pm shower time. Just as he was about to go in the bathroom, I said, “Hey, if you can hop out by 9:15, you can get a cookie.”

“Ok!”

I gave him one heads up that he had about a minute, and magically the shower turned off a few moments later. It took him another eight minutes to physically remove himself from the bathroom, but once he did, he went to the fridge, got himself a cookie and smiled like the happy camper he was.

I raised my eyebrows at The Man and smiled, too.

That’s why it’s still one of my key rules of parenting. 😉