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.

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Updates and Upcoming

SPRING IS MY FAVORITE SEASONIt’s almost the end of February, which means it’s almost spring, which means, it’s almost IEP season. And at our next IEP meeting, I have to let the school know what we’ve decided about The Boy’s future – college or no. I’ve since found that isn’t technically accurate, but it may as well be, with all of the extra work The Boy would have to do just to get into college.

Before that time I would like to meet with the high school band director. I sat with The Boy on Tuesday night as his band warmed up for a pre-contest performance, and listened to him play. And that boy can play. I would absolutely hate for him to have to give it up. I also absolutely hate that this district has decided that they can dictate a child’s program and undermine this little thing called an Individualized Education Program

A friend and I have long wanted to meet with the director of special education, and I also think it’s high time we do that, to discuss how high school works here, and how it violates children’s rights. I may also mention a certain band director who has thankfully moved on from my child’s life, but is still negatively affecting those of other kiddos on the spectrum – another friend of mine had to pull her son out of his class because he was being yelled at, as in verbally abused. That’s four kids that I personally know on the spectrum who have been bullied by this guy, that he has attempted to force out of the program, and someone at the district level needs to know.

Before I do all of that, I will have to respond to The Boy’s current educators and see if I can help them connect the dots to try to make it through this school year. I intend to do this without calling another IEP meeting, but via email and a simple suggestion to contact the autism specialist if they are struggling with implementing strategies, and understanding how to help him meet IEP goals.

I sometimes wish I didn’t have to work so that I could have the time to properly manage all of this. And then I think, if I didn’t have to work, I would probably homeschool at this point, and wouldn’t have to!

The Sightreading of the Parenting World

When I was a band director, it was always expected that I took the bands to “Festival,” which is a nicey-nice term for what it really was – competition.  Ideally, the judges would rate each band according to an ideal, a standard, but in reality, they were comparing your group to the other groups they’d just heard, and would hear after yours, and indeed the phantom college band they had playing in their head at all times, being conducted by some very famous college band director.  And when you were done they would post your scores in the cafeteria, right under the group that had performed before you, and right above the group after you, so everyone could compare…  Yep, it was a competition through and through.

My favorite part as an educator, and my own gauge of my effectiveness as a teacher, though, was sightreading.  This involved taking your group of stage-frightened, stressed-out kids into an unfamiliar band room, and handing them manila envelopes with explicit rules not to touch the envelopes until directed to.  Then, after reading an interminably long page of more rules, the kids and I were able to see the music, and then had seven minutes in which to discuss two pieces of music.  We were not allowed to play a note, just review it together as quickly as possible, and try to catch all of the notes, rhythms, dynamic markings, and other nuances that normally take several months of rehearsal to bring to the stage.  Sometimes we ran out of time and didn’t get through it all.  Sometimes we had time left over.  But when time was up, we played, and were scored on how well we played by the judge.

I often feel like parenting is a lot like being a band director, preparing, rehearsing, going over details until they “get-it,” and then moving on to the next thing.  But that being an autism parent is more like sightreading.  Using all of your knowledge and skills, sometimes in what seems like a very condensed amount of time (because it usually just takes our kids a longer amount of time to do everything), on a stressed-out and overwhelmed kid, and hoping that you’ve done enough for them to be able to apply what you’ve taught them.  There’s a lot of adrenaline and anxiety, and at the end of the day, if you did the best you could do, you take what you’re given, reflect on what could have gone better, and get ready to do it again.

Except band directors (and students) do it once a year.  Autism parents do it every day.

Cheers to all the maestros out there.

The Tuba is Here

tuba practiceIt seems the crisis has passed, although I have had to email the band director to find out the current assignments, and to ask him to make changes to his last quarter grade based on the tests I had sent him on video.  I think “maintenance” will be required within our new arrangement, but I don’t think they will again try to steamroll me into something that just isn’t right.

The tuba has arrived, and I again thank all of my readers that tried to help.  I actually found a decent one on ebay, and it is a smaller, easier size for The Boy to handle.  It isn’t pretty, but it does work, and hopefully we can work from where we are now.

According to the director, The Boy has begun playing more in class, but is still having problems starting with everyone else.  I had asked to come in and take video to do some reverse modeling, as suggested by the autism specialist, but the director was not comfortable having me come in to do that – just wanted me to “explain” to The Boy when to start playing.  So we continue to play this game, with him pretending like he is making accommodations and modifications, when he really just doesn’t get it, and isn’t going to lift a finger to try.

But I see progress, and I’ve stopped them from going down the usual path when they encounter a kid who “doesn’t meet the criteria,” so maybe, just maybe they’ll think twice before doing it to the next kid.

Tuba Update

Aren’t we done with this yet?

Well… maybe.

I wrote my four-page letter to the principal almost two weeks ago, and haven’t heard a single word from her, nor from the band director.  I haven’t heard a thing from anyone (except from LinkedIn, which notified me that the band director had viewed my profile, the same day that the principal received the letter… a coincidence?  I think not!), and so I am beginning to believe they have stopped trying to get him to switch instruments/quit.

I still need to get him an actual tuba to practice, and I can’t believe the help you all have given me.  It’s amazing, really, and makes me realize that the internet can be a very good place.  College band directors and nonprofits have been contacted by us, as well as on our behalf, and one of my readers here referred to tuba players as a “brotherhood,” and he said they take care of their own.  This brought me to tears (good ones!) because that is something I hoped for when The Boy began school band.  I saw it as a place he could belong, and meet neurotypical kids who were a little more likely to be accepting of him.

It also reminded me of when I was in the college marching band, in the piccolo section, and we traveled to Las Vegas for a bowl game.  The stadium continued to sell beer past halftime, and by the end of the game, the opposing team’s fans were incoherent, and several young men were actually threatening us, the piccolo section of the band!  The tuba section, all big, beefy boys left their seats to stand in the aisle between us and our bullies with their arms crossed.  It was a very brave and gallant gesture.

You helpers and supporters are lifting this boy up, in the face of someone who wants him out.

I feel very thankful.  We should have a tuba in the next week or two, and then I will ask to visit class to videotape so we can work on some modeling for The Boy, and help him to participate, which should have been the focus of all of our discussions from the beginning.  Keep sending us your positive thoughts, as now The Boy will need to get caught up!

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Managing My Own Anger

Yesterday was a doozy of a Monday.  I felt like Alexander in the Terrible, Horrible, No Good, Very Bad Day (a favorite when I was growing up).  There was an ant in The Boy’s juice, the cable box went wonky again, a co-worker lied to our boss and threw me under the bus for a mistake that was very clearly hers and hers alone.

And mid-afternoon I get an email from The Boy’s principal saying perhaps he could start on trumpet this week because he doesn’t meet the “criteria” to play the tuba.  Yeah, that just happened.

There were no “criteria” to play the tuba even mentioned at our last meeting.  That band director is discriminating against my child.

boy with tubaLuckily, I didn’t get the email until about 3 or so, because truthfully, I couldn’t concentrate on work after that.  I was extremely preoccupied, and downright pissed off.  Heart beating rapidly, I left work right at 5, and drove to pick up The Boy, planning my evening around the big, long response I was going to write.

The Boy was in a great mood, and I faked a good mood for him, as well.  I shared the happenings with my parents and strategized about next steps with them.

When we got home, I began to type all of the phrases that had been rolling around in my head for three hours, constructing my three-page response.  And I began to shake uncontrollably.  Not with rage, but with anxiety.  I also made several trips to the bathroom, which I have had to do when stressed since my mid-thirties.  When The Man came home an hour later, we talked, and strategized some more, and I continued to write.  I spoke with The Boy’s autism teacher on the phone to gain some insight, and then I continued to write.  The Man knows that getting all of my thoughts down just right in my response was the key to my calm.  Until it was a finished draft ready to send, it would be on my mind.

And of course, I couldn’t sleep last night.  I knew it would happen, but there’s nothing I can do about it, so I just roll with it, going over things yet again in my head for several hours.

My draft is now complete, and it is a killer letter.  I have a plan in place, no matter the response.  He will play the tuba, and will not be switching to anything else.  I’m still angry and anxious, but I’m managing it, thanks to my outlets: writing and planning.  The key is knowing yourself enough to know how you are going to respond to anger, both physically and mentally, and to have something accessible which calms you… A bit like our kiddos, huh?

Band Woes Again

tuba practiceThings are going very well at The Boy’s school.  Last week we got a note home that he had placed 2nd in his class in a pyramid game (whatever that was), and had earned a 100% on a social studies test.  I reflected that even though he doesn’t have hours of homework a night like he did at his previous school, he still seems to be learning the material – they must be doing things right.

I also got a note from The Boy’s band teacher wondering why he hadn’t been able to play his test for his teacher.  I hadn’t known there was a test, and hadn’t even known they had moved on from some small ensemble material they had been playing before and after break.  At the time, I explained to his teacher that I was very ill, but could The Boy play it next week, so I could have some time to work on it with him.

And then the poop hit the fan.

We practiced it once on Sunday, the first day I really felt human again.  And we took Monday night off (we generally practice every other night or so).  Yesterday, I start to get some emails from the band teacher which seemed to suggest The Boy is incapable of playing the test.  He got upset with me when I told him we had only practiced the test once.  He suggested maybe The Boy should play trumpet, because he’s had other kids with autism have some luck with that instrument…

Here we go again.

I’m disheartened that teachers doing what I used to do seem incapable of thinking outside the box to include students with special needs.  They seem not to have a clue that IEPs apply to them, as well.  And to have a parent like me as a resource in educating their student, and to almost disregard it…

I’m the one who’s at a loss.

First Day Report

The Boy had a great first day.  I received a note in his planner reporting on it, and an email from his new band teacher saying he did very well, and pointing out that we could work on the rests (and listen to recordings of the tunes on the band’s website).

Tuba with four rotary valves.

Just like The Boy’s but his would never, ever be found on the ground like that!

This, THIS is what I’ve been looking for.  The Boy had a communication log in elementary, and while I know that middle school is different, this communication about his day is essential to me if I want to know what’s going on.  He did struggle in social studies today (of course!), and I’m not sure what that means yet, but we’ll figure it out and get him there.He was super excited to be at his new school, and to ride the van that is his transportation to and from school.  He gets to go directly to Grammy and Poppy’s house after school, and everything in that arena worked just as it should.  Longer rides, but he isn’t the only kid in the van, and The Boy seemed happy.

I’m happy.

I think this just might work.

 

Hostile

tuba practiceMany of The Boy’s teachers have admittedly low exposure to students with autism.  We’ve already mentioned the social studies teacher and her issues, several times.  One of the teachers who has admitted from day one that he doesn’t know what he’s doing has been The Boy’s band teacher.

Now having been a band teacher, I have been more than willing to help, offering suggestions, explaining things to him, and we have had a pretty good relationship because I know he is trying.  We had gotten into a routine of communicating via email, and he would let me know the assignments, and I would send him the practice log.

A few weeks ago, he didn’t let us know that the assignment had changed, and in fact, didn’t email me until after The Boy had taken a test on material he had never practiced.  The teacher had realized his mistake, and emailed me with the week’s assignment, and that he would let The Boy re-take the test the following week.

That meant that the following week, we were practicing what the rest of the class had already finished the week before, and started to put The Boy behind the ball in this class.

And now this week, we have taken a different turn.  I’ve been emailed several times, with efforts to “document” what the teacher feels is a disciplinary issue, with The Boy “refusing” to play.  I explained that we were behind because of the earlier issue, and that we would try to get him caught up as soon as possible.  And I continue to get emails, like the one this morning, asking me to “explain a discrepancy”: The Boy is struggling in class with pieces that I indicated on the practice log that he could play without difficulty.

Turns out, after closer inspection, I was using his symbol system wrong, and that in his minus, check, plus system, the check is the highest score…  Mea culpa.

But this leaves me to wonder.  Is the lack of knowledge of autism leading these teachers to act in this way?  To want to kick The Boy out of their classes, or to prove that he “can’t” do what everyone else does?  As a former teacher myself, I can’t identify with this, and I don’t understand it.  The knowledge of a diagnosis in one of my students immediately caused me to be more compassionate, more flexible, and often spurred me to do my own research on the condition.

I suppose its root is fear.  Maybe, with training, these teachers can be led away from their hostile instincts.  Or maybe not.  In either case, this is what we’re dealing with, and it’s confusing, it hurts, it angers.  And I only have so much patience for teachers like this who should never, ever hold a child’s issues against them.

That’s My Boy!

Tonight was The Boy’s first full-blown band concert.  He is in 5th grade and was able to start playing an instrument in band this year.  He wanted to play tuba, but settled for the baritone (euphonium) when they wouldn’t let him start on his first choice.  At first, I couldn’t get him to practice, but lately, it hasn’t been so difficult, especially when I play with him.

If you didn’t know, this is what I do all day long.  I teach band in middle school, and to have my own son finally have his chance to play an instrument has been an experienceMy kid has been that kid that doesn’t practice, and doesn’t turn in practice time, and forgets to bring his book home.  My kid. *sigh*

But tonight, he got to see the middle school and high school bands play, and he stayed in his seat, paying attention for the whole concert.

It’s huge.  I’m not just being that mom when I say he’s got a great ear, and I really should have started him on piano ages ago.  He plays stuff by ear from time to time, did really well with recorder last year, and in general loves music.

Tonight, the high school pep band played Seven Nation Army, which is a tune by the White Stripes.  The Boy knows this song because it’s on my iPod, but it starts with the tubas playing the melody, and he turned and caught my eye as soon as he heard it with this big, open-mouthed grin, and…  I turned into my mom (no offense, Mom!) — we always joked that she cried at parades (she really did), and there I was, tearing up because The Boy had a look of such pure joy at the sound of a tuba…

Anyway, this is him – the one in the center of the picture with the (fake) glasses and the green shirt, my budding musician, the star of my show:

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Congrats, Little Man, on what I hope is the first of many concerts!