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.

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.

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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.

Inclusion is still not a “thing”?

Posted on May 29, 2014 by simpleijustdo

While reading the recent NPR article about inclusion, I realized that it’s still a subject of controversy, which puzzles me. Because to me, the issue of inclusion is about basic human rights. In America, every kid has the right to a free education, and the notion that some kids who “hinder” or “distract” kids who will actually make a “net contribution to society” and should therefore be stuck in a room somewhere sounds like something out of the 50s and 60s. Have we really not traveled so far as to realize the “worth” of every human being, and their basic human rights, even in this country?

Wow.

I have to say I’m gobsmacked. Many commenters were concerned about gifted kids being placed centrally in a classroom so they could help their peers during lessons, as if that were a disservice to that gifted child. What? We want to discourage helping others, now? Because not being placed centrally in the classroom would help her achieve higher levels of giftedness? Help me understand…

The Boy in his ASD room with compression blankets, sitting atop a pilates ball

I am not necessarily a proponent of full inclusion, except when a student with disabilities is best served with full inclusion. I prefer for my kid to have a safe space and some downtime in his school day, so that he doesn’t have to be “on” all day long. I love that he has a space where he can be his true self, at least during lunch, and his social skills class. If he didn’t, he would be ready to blow every day when he got home, and that ain’t good for anybody. So I appreciate the sort of inclusion he gets – “Inclusion lite”, if you will.

But as I wrote in my recent post, I want him to be able to socialize with his neuro-typical peers, because that’s a thing. He will need that in his lifetime, in order to succeed to the best of his abilities. And in my humble opinion, he will need that more than knowledge about the Pharoahs of Egypt. I want him to belong to his school community, and that just won’t happen if he is stuck in a separate room all day.

I shouldn’t let the trolls get to me, but every human being has worth, and my kid has more than most. He deserves the same respect as every other kid on the block. And he does have a very basic right to the same education every other 6th grader gets.

Extra-Curricular Activities and the Autistic Child

Posted on April 29, 2014 by simpleijustdo

I read and shared a great article the other day, written by Laura McKenna, entitled, “Our Public Schools Must Be More Autism-Friendly — Here’s Where to Start,” and published on the Pacific Standard Magazine website. In it, Ms. McKenna highlights ways in which schools could be more inclusive with their extra-curricular offerings. She makes an excellent point, as may of the kids I know on the spectrum do not participate in clubs and sports, due to the level of social sophistication that is required for inclusion. But that only allows our children partial access to everything the school experience has to offer.

The Boy and I have made the decision to continue with school band next year. I have spoken to the band director, and we are going to take a proactive approach, and really monitor what needs to be modified and accommodated for him, even in terms of performances. I am comfortable with that, and if I ever get uncomfortable with the situation, I can pull The Boy out and continue with private lessons, which was my intention when the whole band debacle went down this winter. But here’s the thing: I realize now what a social thing school band is, and I understand that this may not work out for The Boy, and that’s OK. But I still want him to belong to his school community, and if it won’t be through band, then how?

We have mostly stuck with independent stuff like surfing

When he dropped him off after spring break, his dad told us all about how they played basketball, and The Boy has a great shot. They also worked on catch, but were not as successful, and they would work on that (uh, right). Sure, if The Boy has interest in playing sports, we could encourage it, but to what end? School sports are also social in nature, with the necessity to read cues from teammates and opponents and to quickly interpret them and decide on a course of collective action – a tall order for someone with underdeveloped social instincts and executive processing difficulties. So he shoots free throws by himself? Again, how does this help him fit into his school community?

Our local Autism Society Chapter has taken on the challenge to fill this void in our community, and I applaud them for it. They have been recognized statewide for creating a “Friends, Fun, and Birthday Club” which happens once a month to celebrate all of the kids birthdays that happen that month. Friends, siblings, and those on the spectrum are all invited – anyone can attend, and since Birthday Parties are kind of a sore spot for the autism community, this meets a very strong need, and is quite successful.

They also have a once-per-month fundraiser at a local pizza restaurant, which has turned out to be a social gathering for the kids on the spectrum and their siblings. They all sit at the same table, away from their parents, and they bring their DS’s and gameboys and have a good ol’ time. It is a sight to behold, and I almost get teary-eyed watching them together.

The chapter offers monthly music and art programs for the kids to participate in, too,and again, friends, siblings, and kids on the spectrum are all welcome.

But again, this is all outside of the school community. Inclusion needs to happen outside of the classroom, as well, and it is high time our schools begin to recognize the void in our kids lives. Yes, we want to allow them the comfort of being alone, but as adults on the spectrum will tell you, they also want to have friends and be a part of the larger group. We have to help them do that, and developing programs to address those needs is long past overdue.

I’m off to share this article with my son’s principal…

Full Inclusion = Extreme School

Posted on January 2, 2013 by simpleijustdo

For the life of me, I cannot figure out why educators insist on sameness.

We spend most of a child’s formative years insisting to them that they are special, they are unique, they are individuals with a right to their own ways of being. And then they go to school…

They go to school and learn to become like everyone else, learning the same things, at the same pace, regardless of where their interests, talents, and abilities lie. Every student must take algebra, every student must take foreign language, every student will be proficient in x, y, and z.

I’m not sure when the trend toward standardization began in schools, although I have a feeling it’s been there since the beginning, because it’s easier and cheaper than individualizing instruction. The inherent problem with this is that kids are people, and there are no two people who are exactly the same. Therefore, everyone has special needs. I need a map if you are giving me directions, otherwise I will get hopelessly lost. The Man learns by doing – you can give him all the instructions you want, but he needs to play Euchre before he can actually learn all the rules. The Boy needs breaks and incentives throughout his day to get his work done. And he needs alone time with an electronic device to decompress.

So why the soapbox post today?

Recently, I have heard some teachers in full-inclusion situations say things like, “They do just fine, until they don’t,” or “He’s on those video games as soon as he gets into the car after school. I wish his mom wouldn’t use them as a crutch, a babysitter.” In the full-inclusion world, any kid that visits the resource room more than 45 minutes a week is “severe”.

Think about some part of your daily work that requires all of your concentration and effort. Now think about doing that task for six hours a day.

My kid with autism works so hard at being like the other kids in the classroom, and he has made great strides. There are still times where he escapes, lashes out, or just isn’t absorbing much, but he is working really hard. His ASD classroom provides a space for him to just be without the trappings of societal expectations. Does that mean the learning stops? NO, in fact, more learning goes on in that room because he doesn’t have to try to be someone he isn’t. In the ASD room (some may call it a resource room), they have the ability to slow down, speed up, back up, and stop if necessary, providing those little pit stops on the way to encourage the work being done. My kid with autism has thrived with this IEP recipe.

And maybe that kid with autism who is on the video games in the car is seeking respite from working his butt off in your classroom all day long. Maybe his mom lets him have that time to be himself because that’s what’s best for him.

Is full inclusion bad? No. Of course there are kids who will thrive in that set-up! We want our kids to have full access to the curriculum and the right to full inclusion if that’s what’s best. But I’m not sure why it has to be all or nothing for every kid — It’s pretty rare when “all or nothing” is a good idea in education.