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.

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A Perfect Storm

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Yesterday, The Boy left his bag on the bus. Not his backpack, like he originally tried to tell Grammy when he arrived to their house. His “electronics bag” which he carries everyday and contains his iPad, his 3DS, his games, and all of his chargers. Cha-ching.

As soon as I arrived (after 5 o’clock), and determined what was really missing, I contacted The Boy’s teacher, who had contacted the vice principal who deals with transportation. He emailed back to say he would look into it in the morning. *sigh*

Remarkably, The Boy was not overly agitated or anxious, although when his laptop finally ran out of juice around bedtime (because his charger was in his bag left on the bus), he let loose a few loud and angry epithets, and I had to snuggle up next to him to calm him enough to sleep.

I also found out yesterday that his special ed teacher would be out today due to dentist appointments that she had forgotten about for herself and her two children. Ok. We’ll manage, I told her.

And then I received two texts from her classes (math and English) reminding us to sign and return a movie permission slip for today. Guess what? No permission slip was in his backpack. So who do I email? Weren’t we doing this dance a couple of weeks ago?

Finally, after emailing his elective teacher to explain that we would need one more night for a project, he emailed back to say it was no problem (yay!), and to explain that The Boy had a quiz today (wha?).

So today, The Boy has an absent teacher (check), a missing electronics bag (check), no permission slip (check), and a quiz (check). Everything will be fine, right?

Did I mention that we might get hit with Hurricane Matthew this weekend, and everyone is buying French Toast supplies (milk, bread), water, and generators at an alarming rate?

Everything will be just fine…

End of the Week Cha-cha

stairs-man-person-walkingThe Boy’s special ed teacher has been out since Tuesday this week at a conference. We prepped him for it, he met the sub the previous week, and we did what we could. And he did well. Until the end of the day Wednesday.

At home, we heard rumblings about having to leave school early again to catch the bus. With no special ed teacher to email Thursday morning about his anxieties, I emailed the principal. In the meantime, he had told the sub he was getting a ride home with me, and emailed me about “everyone being absent”. It resulted in two administrators being involved (the one I contacted and the one the sub contacted), and the TA being asked to send me an email, cc’d to a list of people about how he was just fine, and how they had adjusted to his needs.

M’k…

Today, just before 10 (middle of 2nd period), I got a call from the counselors office – The Boy was there and was a little agitated about all the people who were absent and wanted to chat with me. We chatted. He seemed better and we hung up. An hour later I got an email from him saying they were closing many schools due to the weather today. Again, I tried to reassure him. After 3rd period, I received another email from the TA (cc’d to a shorter list of people) saying he was fine in 1st and 3rd periods, but did go to the counselors office during lunch. Oh, and he was insistent that the football game tonight was cancelled and Monday would be a holiday.

I could go off about the TA obviously not having a clue about anxiety or anyone being “fine”. But I won’t. We obviously took some steps back this week, and may miss out on his second marching band performance if he’s still anxious this afternoon after school. But…

  • He vocalized his concerns, both at home and at school – self advocacy!
  • He made his own way to the counselors’ office when he was overwhelmed with anxiety!
  • He feels comfortable enough in his special ed classroom that his anxieties seem easier to manage there!
  • And the staff was responsive and patient with The Boy.

So while it pains me to see him struggling, he is making great strides at the same time. I am proud of him, and grateful to be in a school that seems to, for the most part, be willing to give him what he needs, even if it’s plenty of time to calm down.

Back to School

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The blog has been quiet this week, and I’m sorry for that. It’s a busy time of year, and I’m sure that most of you are experiencing some of what we are, too.

Most autism households are experiencing anxiety and behaviors right about now, too. Mama Fry from Autism with a Side of Fries is experiencing this in spades right now, and I read her posts and think, “Is there any doubt that our kiddos need ESY?” Come IEP time, I wish we could show the team video of what we experience at home these first few weeks of school. At our house, it includes perseveration about fire alarms and drills, fixation on the time the bus leaves school, and the fact that his middle school email address no longer works. There’s a lot of pacing, and more than a few angry outbursts. And in our case, lots of emails from The Boy at school to me at work, explaining his plans to fix all of his imaginary vehicles because they have all broken down.

In a word, anxiety.

So that when the district insists that he doesn’t qualify for a program to provide him continuity, we can say, “But this is what happens after break. Autistic kids need consistency, and if you offered year-round school, we’d be the first to sign up.”

Good luck to all of you tribe members. It’s a tough time of year.

 

He’s Excited. I’m Scared.

We got The Boy’s schedule finally, and it was slightly different than expected, with no core class second semester and a passel of scary-sounding electives like “Principles of Business & Finance.” I emailed his new teacher with my concerns, and she said those are the career and technical education courses they take as part of the Occupational Course of Study, and that the special ed teachers work closely with those teachers to make sure everything is modified. Seniors get first pick, so there’s not much left for freshman when they schedule them.

Ok. But if you have a 9th grader who still can’t multiply and divide independently?

And the lack of core classes was due to the only male PE class being offered at the same time during second semester, and he can just take Biology when it’s offered again, either sophomore or junior year.

I look at this schedule with these long-titled classes that last an hour and a half, and I know there will be no parapro, and I start to get a little queasy with all the what-ifs racing through my brain.IMG_5643

My constant refrain seems to be “How does this work?” And I have to let go. I have to trust that it will be fine. I have to give this new set of teachers a chance to prove they know what they are doing and that they are professionals.

And while I do that, I am preparing my own “curriculum” of supplementary stuff to help him find some meaning in his day, just in case “Sports & Entertainment Marketing” isn’t quite up his alley. Like maybe a coding workshop, and some time spent feeding some animals at the wildlife shelter.

“Thinking will not overcome fear but action will.” ~ W. Clement Stone

It’s Going OK, I Think

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?

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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

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!”

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.

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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.

Nice to Hear

Yesterday, I emailed the Amazing Camp Director, new member of The Boy’s tribe, to let her know that I would be picking him up today so I could get him to the tail end of marching band practice this evening so he could show his face and begin to make some connections there. I also let her know how much The Boy appreciates her, because I think it’s important to let people know when they’ve touched your life.

She responded: “The Boy is awesome!! Seeing him puts a HUGE smile on my face!! He re-supplies the bubbles & he’s doing a fantastic job! His counselor left early today & won’t be in Thurs or Friday … He was great about asking who his counselor would be, I loved that he didn’t allow the uncertainty create anxiety (he may have been anxious but he knew to ask!!!) I explained it’s always so difficult because everyone wants to spend the day with him but (the substitute counselor) was the lucky one this time😀 he gave me the biggest smile & hug!! He truly brightens my day!!”

I’ve written before about what a mystery my child’s day is to me because he isn’t so verbal about what happens at school/camp. Notes like this not only warm my heart (he really does make fans of everyone who gets to know him!), but give me a glimpse into his day, his thoughts, his personhood. Notes like this are also a sign of a great educator and a wonderful person. ❤

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New Member of The Boy’s Tribe

The Boy adores his new summer day camp. They go swimming at the community pool three times a week, he has friends from school who attend, and they play Wii bowling – what’s not to love?

He also has a new member of his tribe. The camp director is a high school special education teacher from another school in the community, and she is amazing. Wanna know how I know? The Boy gets a huge smile on his face when I mention her, and he doesn’t do that for everyone.

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As I mentioned yesterday, he’s having some anxiety over absences again, exacerbated by one of his close friends being ambivalent about camp and intermittent with his attendance. Not only did the camp director figure out a way to entice his friend to come to camp (allowing him to do a few magic shows at camp), she has figured out a strategy to alleviate some of The Boy’s anxiety. She reasoned that his anxiety stems from not having control over whether or not others are absent, so why not allow him a little control over something else?

She said he is always letting her know when supplies are low (which is great because the staff does not), so she could have him do a daily inventory of supplies (and even campers!) with a clipboard. By allowing him input in tracking, it may alleviate some of his anxiety.

This, THIS, is the sign of a great teacher. One who actively thinks about her students and their needs, even outside of school (or camp) hours, and devises needs-based strategies to help them with their daily functioning and emotional state.

So, welcome to the tribe, Camp Director! The Boy can spot the good ones a mile away. Now we just have to get you to come over to our high school 😉