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.

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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.

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. 😉

Power, Peers, and a Sad Evening: Part III

tuba practice

Last Tuesday, The Boy took me to lunch with a gift card Poppy had given him to do just that. I picked him up from Grammy’s, and we went to McDonald’s. Somewhere along the way, I asked him if he was still sad about the concert.

“Hm,” he said, indicating he didn’t have a ready answer.

“Or maybe you haven’t been thinking about it too much,” I suggested.

“Yeah, I haven’t been thinking about it much,” he parroted back. “I just wish it hadn’t have happened.”

“Me too,” I said. “Those kids made a poor choice, didn’t they?”

“Yes, they did.”

I told him a little bit of the conversation I had with the principal. He asked if the band director had done anything about it. I told him the kids had had to talk to the principal and Mr. Collins about their choices. “The principal didn’t think the kids did it to be mean, though. What do you think?”

“I don’t know,” he said.

“It’s hard to tell if someone is just being mean, huh?”

“Yeah.”

“They told the principal they did it because you were playing wrong notes.”

“I wasn’t playing wrong notes!” he said, alarmed.

“Even if you were, it still wasn’t their place. You don’t touch other people’s instruments.”

“No, you don’t touch other people’s instruments,” he agreed.

I asked him to tell me if anything like that happened again, and our conversation moved on to other things. He’s sad because he can’t get that performance back. I think he knows the kids treated him differently than they would have treated a neurotypical kid. I think he’s wondering why they did it. I needed him to know the jist of what had been said at the meeting and what the kids involved had said to the principal. He has a right to know. Along with the right to play.

 

Power, Peers, and a Sad Evening: Part II

I met with the high school principal, The Boy’s special education teacher, and the band director last Friday. It was their last day before break, and it was apparent the principal wanted to clear her plate before she left for two weeks. She explained that they take any hint of bullying very seriously, and she wanted to speak with me right away without delaying the conversation two weeks. Potato, pot-ah-toh.

Let me preface this by saying it was not an adversarial conversation. The principal and I did most of the talking, and we understood each other to a great extent. But, she lost me when she could see both sides of the issue. I bit my tongue, let her finish her thought, and promptly explained that I used to be a band director for a living and that behavior was never, ever acceptable. You don’t touch other people’s instruments. She didn’t disagree.

She felt it wasn’t malicious, and therefore it wasn’t bullying but an extremely poor choice. The kids involved felt The Boy was playing wrong notes, and that they needed to apparently stop him from doing so. She said she questioned them on that when she spoke to them, asking who had given them the authority to do that. They couldn’t answer. They were very remorseful, she said.

We talked more about whether or not The Boy is included in the band class, and in the school as a whole. She said she thought I saw different things at home than they did in school. “He has a group of people that he hugs and gives high fives to every day,” she said. “I know, but he doesn’t know the name of the kid he sits next to every day in band,” I said. They went back and forth between trying to assure me that no one has negative feelings toward him, and highlighting how he keeps to himself and insists during sectionals that he knows the material. She admitted that one of the students she spoke with about the incident “guessed” that The Boy was autistic because as he explained it, “I don’t know anything about autism, so that must be what he has.”

Ugh.

They continued to prove my point while it continued to go over their heads. She insisted that they would have done the same to any other students who might have been playing wrong notes, and I knew that was preventative defense against further action from me. Because that is a load of horseshit, if you’ll excuse my language. They know my son doesn’t have the verbal agility to defend himself or get the attention of the teacher, or even explain what happened after the fact. I only found out because a friend’s kid watched it go down. They took advantage of him precisely because of his autism. If this wasn’t bullying, it was a shocking display of the bias that exists in the school culture that students with disabilities are “less than,” and that excluding others from participating will get you a stern talking to from the principal and that’s it, because you didn’t mean any harm, and are “good kids.”

Before the meeting ended, as it was clear the principal was ready to get to her vacation, I requested they investigate peer to peer programs and seriously consider implementing something so that a “poor choice” like this wouldn’t even enter their minds in the future. I got some vague promises to look into it, and the meeting was over.

But it’s not over.

I’ve already drafted a follow up email to be sent with my further reflections on the incident and how it was handled. And I will also be following up with the various and sundry promises made. I can be a magnificent thorn when I want to be.

I’ll keep you posted.

Power, Peers, and a Sad Evening

The Boy’s first concert of the “sit-down” band season was last night. We bought a tux, and traveled two hours last weekend to get a tux shirt, cummerbund, and bow tie combo. We were looking forward to this.

After the first song, The Boy pushed his chair back, put his tuba on the floor, and exited the stage. I sat in the audience with my family, my heart pounding, just knowing a meltdown would ensue any moment. But it didn’t.

The band director seemed to check on him between songs, but The Boy didn’t return to the stage. After the concert was over, I asked The Boy what happened, and he said, “They didn’t like my playing.” He was sad, not angry. I was confused.

Back in the band room, while waiting for The Boy to say goodbye to all of his little friends-who-are-girls, my friend and her sons who are both in the band were there, and I spoke to her. One of her sons spoke up and told me that the other kids in The Boy’s section had taken his mouthpiece away so he couldn’t play.

I’m sure I turned about six shades of purple.

I let the timer run down for how long The Boy could find friends, and then I told him we needed to find the band director. When I found him, he was standing right next to that skunk of a middle school band director. I explained what had happened, and he seemed mildly surprised and said he would “talk to the kids” about it. I reminded him that it could have ended very differently, with a screaming-and-throwing-things meltdown in the middle of his concert. He repeated that he would talk to them.

The Boy and I went to the convenience store to get him his promised ice cream, and we talked. I told him how very proud I was of how he handled the situation, and that those kids had no right to do that to him. I let him know that I was angry, and he expressed disappointment that he only got to play one song. I told him he had every right to feel that way, and that what they did to him was very wrong.

On the way home, I decided to go up the ladder without waiting for a response from the band director. Based on his less than promising response, and suddenly remembering the two week time period where The Boy had no concert music because his section leader had failed to give it to him. Repeated targeted negative behavior directed at one student is the definition of bullying, and that’s what we have here, folks.

I knew going in that the culture of this student group wasn’t all that inclusive. But for those students to take away my son’t ability to participate as if it were their choice to do so is pretty telling that there is something deeply wrong here. I’ve written an email addressed to the band director, the special ed teacher, and the principal highlighting my concerns, and requesting a meeting. Whatever this is ends now, and they have got to start teaching neurotypical peers how to deal with autistic kids in their midst. They are targets that are just to easy, and it’s time the adults in the building did something proactive to protect them.