Power, Peers, and a Sad Evening: Part III

Posted on December 28, 2016 by simpleijustdo

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.

An Unexpected Hiccup

Posted on August 30, 2016 by simpleijustdo

Friday night was supposed to be The Boy’s first performance with the marching band. It didn’t happen, or rather, it happened without him. One of his friends-who-are-girls had some sort of allergic reaction and couldn’t perform, so he quickly decided his eyes had puffed up, as well, and he needed to go home to rest.

Last year, when he was to perform with the high school band as part of the 8th grade class, he had the worst anxiety attack I had ever seen. This year, he has attended band camp and a few rehearsals, and seemed excited, but this unexpected hiccup sent him off the rails. And no one was attending to him. They were barely paying attention as he paced and perseverated, become more aggravated with each step, his voice getting louder and louder.

I’m not very impressed with the resistance we’ve met upon joining the group. No kids go out of their way to help The Boy participate, and the assistant director who is The Boy’s former middle school director seems somewhat hostile at times, most likely because he had advocated against The Boy being in the high school band.

Before the meltdown, this same former teacher of The Boy’s approached me when I was dropping The Boy off that night, and began to tell me what he needed to show me, and what The Boy needed to do. Um, no. I am the parent, and I am dropping off my kid. Do you ask other parents to assist their children in finding their instruments and getting fitted for a uniform? No you don’t. I am not your aide or your paraprofessional. Get a staff member to assist,or get a drum major or responsible senior to assist. It’s almost as if he was saying, “Well, you wanted him here…”

And yet, The Boy still wants to participate, still wants to belong. He doesn’t see or feel the resistance. The Man was upset the whole weekend because no one there was “looking out for The Boy”. At what point do we consider pulling the plug? At what point, do we ask ourselves if he should even be here if he’s seen as an aggravation rather than a member? I just don’t know.

The_Big_Brass_(8101293170)

Inclusion Starts with “Hello!”

Posted on August 2, 2016 by simpleijustdo

Thursday night, The Boy and I ventured to one of the marching band rehearsals from which he has been excused, due to logistics and conflicts with summer day camp. We wanted to just stop in and possibly say hi, meet some people, help with the transition. I made arrangements to leave work early so I could pick him up and get him there before it was over. We arrived and discovered the brass section in the band room. I told The Boy we would wait until they were on break to enter, so as not to disturb them. After waiting for a good bit with no break, he wanted to find the woodwind section to see how many of his friends from last year were in attendance.

He loves it so much..

We found them in the library and were welcomed in by the band director. We sat and listened for a bit, and decided to head back to see if the brass were on break. They were, so we walked in, and The Boy’s middle school director was at the front of the room. I can’t quite describe the look he gave us when we walked in, but it was not pleasant. He didn’t say anything – not, “Hello,” not “Hey,” – nothing. No welcome, and no introduction for The Boy to this room full of kids who didn’t know who he was, save for a few. The Boy, oblivious, walked over to one of his friends and gave her a hug as she sat, and then I suggested we leave again, as our presence certainly did not seem to be welcome. We went back to the library and the woodwinds were being released back to the band room for a full rehearsal. The high school band director greeted The Boy again, and The Boy talked his ear off the whole way back to the band room. We listened for a bit to the full band play, and suggested again that we leave before everyone was released, and The Boy agreed.

He may be oblivious, but I am not.

While thankful the high school band director at least had the sense to appear welcoming, I’m sad that none of the high school students had the wherewithal to introduce themselves to The Boy. I’m disappointed that not one of the three drum majors, students in high levels of leadership, recognized their duty to welcome a member, albeit a non-traditional one. I’m livid that a professional educator who taught my son for two years cannot even greet him, and would go out of his way to make him feel unwelcome.

And right now I’m at a loss. I knew this wasn’t a terribly inclusive group to begin with, based on The Boy’s friend’s experience last year, who is also on the spectrum, and lacked a single friend in the group even at the end of the season. I knew I wouldn’t gain any friends by forcing our way into the group, even with the weight of the law and human decency behind us. But I have not been so uncomfortable, and made to feel so incredibly unwelcome since I encountered mean girls in my own middle school experience. It was that palpable. Do I try to educate and advocate? Do I engage outside help either from school administration, the autism society, or the state band directors association?

Or do I give up?

Is this really worth it?

I don’t know. All I know is that this shouldn’t be.

Anxiety about the Unkown

Posted on April 13, 2016 by simpleijustdo

When I was about 10, my parents and I watched “Iceman,” a movie about a neanderthal man found in ice and resuscitated. The question I had for my mom at the end was if it was ever possible for us to return to that state of being – unfamiliar with the technology of the day, and possessing only the most meager of skills. She answered that it was possible in the event of a nuclear war (this was in the mid-80s). Unbeknownst to her, I began to panic about the possibility of nuclear war, and the media coverage of the cold war only fed my frenzy to the point that I was afraid when I heard planes flying overhead, thinking it was the Russians about to drop the bomb.

My dad finally talked me off that ledge (he really would have been a fantastic teacher or counselor) one night, explaining to me that my fears were not founded in logic, and that I was safe.

I went about my life, and I was fine.

But every once in awhile, I get gripped by a current worry, and it turns into an irrational fixation. The internet is a wonderful tool and the most fantastic invention of our time, but during these moments, it is my worst enemy. Rather than trusting my own intuition, experience, and intelligence, I go searching for an answer from strangers who don’t know me or my situation. The answer must be out there, I tell myself.

how I worry And so, with my child’s future seemingly in the balance, and a boy who looked at me with panic in his eyes last night, asking “Do I have to quit band?” this is where I am today. In front of the computer, searching for answers, for someone to tell me the right thing to do. Do I choose one of the pre-existing paths for The Boy to follow through high school, possibly denying him access to college or, on the other hand, subjecting him to years of struggle and stress in general ed classes with little support? Do I try to blaze a new trail and fight for a hybrid that is legally his right (with little hope of succeeding)? Do I fight for him to be in marching band when I’m not sure whether his love for it is more obsession or genuine interest? Do I just pull him out and homeschool (somehow)?

For my sake, I’m putting it out of my mind for a bit, waiting to hear when the meeting with the director of special ed will occur, and asking for the IEP to be postponed at least a week. Coping through distraction and delay.