Power, Peers, and a Sad Evening

Posted on December 16, 2016 by simpleijustdo

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.

It’s Going OK, I Think

Posted on August 10, 2016 by simpleijustdo

The Boy went to band camp for three hours on Monday evening, and it went ok, I think. I never know for sure, because he isn’t quite verbal. But a friend’s son said he did “pretty good,” for which I thanked him – I’d have no idea without that concise report.

He was excited to go – gave me no problems leaving summer day camp, and was patient when the plan changed slightly (the band was not in the cafeteria when he arrived, as expected). We waited for them to finish rehearsal on the practice field, and then located his friend. I told him to hang out with him, he would show The Boy where to go and what to do, and then I left.

It was a weird feeling. We’re not used to this organized activity thing.

I went back to pick him up a few hours later, and was glad to see I wasn’t the only parent unsure of the protocol. Do we stand by our cars and wait? Do we approach the field as they are finishing up? Do we halfheartedly check Facebook in our cars while watching for our children out of the corner of our eyes?

While I didn’t want to embarrass him, I ended up waiting until they were released and waiting by the edge of the field to make sure he remembered to grab all of his things.

And it worked out ok. He was happy, grabbed all of his stuff, and when he came home, practiced his tuba for a bit more, no doubt scripting the band director cues and admonitions (because incorrect articulations are an obsession, right now).

I hope this continues. I hope he can get the feeling of belonging that comes with being in a group like this. I hope we’ve worked out a decent compromise. I think it’s going to be ok.

There’s Hope Here

Posted on August 5, 2016 by simpleijustdo

I spoke with the band director about band camp next week. Originally, he had said he wanted The Boy there, which would mean a 12 hour day and missing the last week of Summer Day Camp. The Boy put the kibosh on that, but agreed to go after day camp. I asked him if he understood that meant a change in his routine – he would have no time at Grammy’s for the week, and would add an additional three hours to an already long day. He assured me twice that he could handle it.

When I spoke with the band director, I told him the schedule The Boy would follow, and he seemed to understand. I asked him about a few logistical details, and if there would be an upperclassman or someone who could help The Boy keep track of what he is supposed to do. He responded with the name of an adult supervisor who had helped The Boy’s friend last year, and would be very helpful to The Boy – he had already made arrangements for this, which impressed me.

Finally, I asked if it would be helpful for me to come in and talk to the kids about autism, and at first he said that the kids already had some experience with The Boy’s friend. I responded that The Boy is a different kid, and that we sometimes expect kids to know how to react when they really have no frame of reference. He really liked the idea, suggesting I come in after the school year has started.

So I have renewed hope for this enterprise. The band director seems much more open than the directors we’ve previously encountered. He has some learning to do, clearly (Rule #1 of autism: If you’ve met one kid with autism, you’ve met one kid with autism), but seems to know there’s room to grow there.

I just texted my friend, mom to The Boy’s friend and his twin brother who will be in their second year of marching band this year, asking if they would save him a spot at dinner, which is just about the time The Boy will arrive to band camp each day. She said The Boy’s friend and his brother have already indicated that they plan to “look after him,” which warms my heart and gives me even more hope. Maybe this will work our after all…

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P.S. The ex actually sent me a check to pay for band camp… Will wonders never cease!

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.

Band Plan

Posted on June 15, 2016 by simpleijustdo

I met last week with the high school band director who had attempted to tell me that he didn’t think marching band was a good idea for The Boy, based on the experiences of a boy on the spectrum that had been in it last year. By the way, that boy is a friend of ours and busted his behind for that group, and found it very difficult to make friends in this marching band, but I digress… The high school special education teacher was there too, and I’m so glad she facilitated. She looks like she will be a rockstar for The Boy, and unfortunately, he needs a strong advocate in his own school system.

Shockingly, the band director had changed his tune a bit, although he did point out that the middle school band director also thought marching band would not be a good idea for The Boy, either. “But I’m not closing the door…” he said. Kinda hard when my foot is wedged in it, huh?

I had come prepared with a list of applicable laws, just in case, and a list of modifications and alternatives. Turns out, I didn’t need the laws (since he wasn’t “closing the door”), and when I suggested the first alternative, they both seemed receptive. After hashing out some details, we devised a plan: The Boy will play at Friday night football games only, and will play his sousaphone in the “pit” section, which is where the semi-stationary percussion instruments like xylophones and timpani are. This will allow him to participate without having to learn the “drill” (complicated moves), and without having to rehearse after school every day. He will be in the marching band class, but if they are not rehearsing music, the band director may send The Boy to English with the special education teacher, where he can work on any homework he may have, or get a second “dose” of a subject in which he has deficits.

And he will be in concert band in the spring, regardless of whether or not there is a second, “lower” band.

So, we have successfully shoved that damned door wide open, and created a place for my kid in their program. See how much can be accomplished with open minds at the table?

Battle over Band

Posted on June 2, 2016 by simpleijustdo

In a week, I’ll meet with the high school band director and the high school special education teacher, and hopefully walk away with a plan for The Boy to be able to continue participating in band.

If you recall, after missing a meeting with me, the band director told me at orientation that he didn’t think The Boy should be in marching band, but there was a possibility that concert band in the spring could work out for him.

When I mentioned this to the Director of Special Ed for the district, a phone call was made to the high school principal to discuss it, apparently. Why? Because it is against the law to deny a special education student access to curricular, extra-curricular or co-curricular programs. Which law? IDEA is pretty explicit, and in fact, if The Boy wanted to, he should be afforded all supports for the extra- and/or co-curricular programs that he is afforded in his regular classes (i.e. if he has an aide in class, then he should have an aide on the field in marching band, helping him learn his drill).

In fact, marching bands across the country have embraced their roll as an opportunity for students with disabilities. Kids with autism, kids with CP, kids in wheelchairs, and there is even an entire drum corps made up of kids with special needs.

Yet, this guy thinks he can tell my kid no. Or rather, he thought he could until I squeaked.

Now, will The Boy be up for all of the summer, evening, and weekend rehearsals that often entail grueling hours in the sun? Probably not. Will he be able to learn an entire drill and carry a sousaphone that whole time? Probably not. But there has to be a place for kids like mine, and if there isn’t one, we’ll create it.

You can’t just say no, sorryboutchya. And why would you?