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. 😉

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.

What Do I Do?

There are times when the various people in The Boy’s life reach the end of their list of strategies, and pull back, saying, “I didn’t know what to do.”

It’s ok.

I’m his mom, and I reach that point quite a bit.

When Grammy reached this point the other day, I thought a bit about exactly what it is that I do when The Boy is heading toward a meltdown.

  1. Try to get him seated and then sit myself.
  2. Listen to what is making him upset.
  3. Acknowledge his feelings (“That is upsetting. I’m sorry.”)
  4. Offer to help – this usually is “not possible,” according to The Boy.
  5. Try to redirect the conversation from THIS HAPPENED to WHAT WE WILL DO ABOUT IT.
  6. Offer suggestions. If these are rebuffed, ask “What can we do?”
  7. Repeat 2-6 until he is calm enough to come up with a plan moving forward. It may make no sense. It may be fantastical or improbable. But looking forward allows him to move on from what was upsetting him.

This can take some time, or no time at all. I’ve found that #2 is the most important, and that if you do this process enough, it becomes easier and easier for him to process.

This is what we do. It may not work for you – every kid with autism is different. It has worked for us, and helps build our relationship each time.

It’s Been a Struggle – Update

Hey, there, friends. Long time no write on my part. I’m sorry about that. Between the election, NaNoWriMo, and some other stuff going on in our lives, my head has been swimming. I did pre-write some posts and schedule them, but not as many as I would have liked, so I’m checking in with you all today.

  • I woke up at about 3am this morning with the weight of the world on my mind. This has happened a lot since November 9. As I said in my last post, I’m very worried about The Boy’s future, more than I have ever been. His medical coverage is at risk, and that would affect us emotionally and financially. I don’t expect any progress at the national level in terms of increased programs for adults on the spectrum, either. Maybe this do-nothing congress that has been virtually re-elected will surprise me, but I doubt it will be in a good way.
  • The Boy has been struggling with some violence during his meltdowns this year, and I am investigating how we can best help him through this. We may be switching doctor’s offices, we may be switching medications (big yikes), and we may be looking into some therapy for him. It depends on what his insurance will cover. But he needs some help dealing with his anger (thanks a lot, puberty), and I’m at the bottom of my toolbox with nothing left.
  • I get my first Thanksgiving mini-vacation this year since 2012. Every other year in between, I had to work on some portion of the days surrounding the holiday. Starting tomorrow at lunchtime, I am off until Monday, and man,will that feel weird. Good weird, though. 🙂
  • Then The Boy’s birthday is right around the corner. He’ll be 15. There goes my head, swimming again…
  • And the ex reached out post-election with an eloquent text saying he knew he had neglected his son and wanted to be a regular part in his life, promising to call every Sunday. That lasted exactly one Sunday, but I suppose his heart is in the right place. The Boy will be heading to his dad’s for Christmas, and I will miss him desperately.

So, my head continues to swim, which is better than sinking, I guess. I wanted to check in with you folks. It seems like it has been forever.

I wish you all a wonderful Thanksgiving. ❤

Broken

I woke up early today to get some more work done on my Nano novel, as I have been doing every day since November 1. But I can’t. No, I really can’t.

I stepped into my office and nearly retched. I saw one headline and began to sob. I knew the result in the wee hours, but the headline read, “What do we tell the children?”

My husband said I should stay home from work. He’s probably wishing I had stayed in bed so we could hold each other and put off starting this day a little longer.

But I didn’t. I got up, put my yoga pants on and came in my office to write. I took a quick detour to TheBoy’s room and held him tight for a moment, and now I’ve started my day.

I won’t miss work today, even thought we have suffered two sleepless nights and I still feel like I could vomit right here on the keyboard. I’ll get The Boy ready for school, and we will go about our normal routine. I will pull my loved ones around me like a cloak, and we will love each other, work hard, and play, just as we have.

I will also make phone calls and write letters until my local and state politicians know my name. Just because there is an R next to their name doesn’t mean they don’t work for me. And we have work to do.

Now that guy at the top? He doesn’t work for anybody. Don’t be fooled. Let’s just hope they gave him fake codes.

We have to sit tight and hunker down for three and a half years. And then we’ll have to make one hell of a noise if there’s anything left to fight for.

What do we tell the children? We tell them that sometimes even adults make mistakes, and that just like when you break a plate, saying you’re sorry doesn’t fix it, our country is broken right now. But when things get broken, we try to fix them first before throwing them away. And we’ll need their help to do that.

That’s what we tell them.