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.

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.

 

Perspective & Paradigms

I had dinner with a new friend the other night. She has been a friend to me in several ways this year, but we actually met for the first time that night. She is a mom to three boys between the ages of 13 and 18. And they are all neurotypical.

We talked about the apparent lack of student support for The Boy and his friend in the marching band. She carefully and respectfully defended kids like her son who are more than happy to interact with a peer on the spectrum at home, but not necessarily at school, where peer pressure can be a hard thing for any kid to overcome. She said in middle school, everyone is trying to fit in, and in high school, everyone is trying to get out.

After 17 years teaching at both levels, I get that.

But to my ears, it rang as old-fashioned as the tired phrase, “Boys will be boys.”

Of course, I understand and fully believe how difficult it can be for middle school-aged children to look beyond themselves to see others who need help. It’s Child Psychology 101 – at that age, as you may remember, they see themselves as the center of their own universe. Remember thinking everyone would laugh at you for that zit on the end of your nose, or the bad haircut, or the crazy sweater your aunt bought you? But they really didn’t (unless they were mean kids, anyway), because they were too busy worrying about their own zits, and haircuts, and sweaters. Indeed, some people never grow out of this psychological stage, but that’s another post.

Most of us do grow up, and realize it’s in the caring for others that we find ourselves.

And what we need to realize is that our kids need assistance in growing up and out of this psychological stage. Yes, it’s normal, but we don’t want them to stay there. Just as we taught them to walk and tie their shoes, we need to teach them to be their own person. We as parents need to help them understand that “different” is not inherently bad, and we need to expose them to “different”, whether it be people, foods, cultures, or ideologies. Seeing and learning about differences is how we figure out and find peace with ourselves. What a gift it is to learn that we are not alone in our weirdness! Who wouldn’t want to help their children find that awareness??

Yes, it’s hard for typical middle schoolers to break out of their comfort zone and befriend someone perceived as different in front of other middle schoolers. But what a teachable moment, rife with lessons! Pick up the baton, parents, and show them the way.

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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

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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The Math Muddle Update

The Senate Committee has sent the bill to the Senate, but has modified it to allow students the choice of taking integrated math classes, or a more traditional set of discrete math classes. They have also re-instituted the provisions which allow students with disabilities to substitute classes in order to earn a diploma.

We, personally, have dodged a bullet, but the teachers may now be left scrambling, trying to figure out how to offer completely different classes concurrently, and the senate committee members comments were basically summed up as, “suck it up – you’re teachers and you can figure it out.”

Why, oh why do they meddle in a profession about which they have no clue? Do they issue mandates on how medical professionals examine their patients? Do they issue bills requiring dentists to fill cavities according to a proscribed set of guidelines? Nope, just the educators get the benefit of their omniscient wisdom.

It is no wonder we parents of special needs parents have chronic stress and anxiety, when issues like this face our kiddos. When their very futures hang on the whims of pompous know-it-alls who have the power to change policy at a moments notice. I avoid being political here, but voting is necessary. We need to ensure that level heads prevail with our children’s futures on the line. Vote out the bad, and vote in the good. That is our only power, and it’s on us if we don’t use it, or if we throw it away.

When Government Tries to Make Decisions About Education

It’s an unmitigated disaster. You have people whose only experience in the classroom was as a student, people who don’t understand the depth and breadth of education philosophy or pedagogy, people who bring their own agendas and axes that they would like to grind.

I just finished reading an article that applies to the senate in our state considering a sweeping bill that would make sweeping changes to high school requirements for students with disabilities. You see, my state has already created a quasi-legal situation students with disabilities, creating a separate but equal “track” to “train” kids with cognitive disabilities or learning disabilities in an occupational course of study, with the idea of getting them prepared for the workforce rather than college. And due to the lack of availability for accommodations, modifications, and supports in the traditional course of study, many like my son, have no real choice to make.

calculator-scientificNow they have decided, these wonderfully removed legislators without a lick of educational background, that the provision that allows for the integrated math course taken over the course of the occupation program is insufficient, and that disabilities be damned, no student will graduate without taking four consecutive and specific years of math. You can’t do your times tables? Screw you kid. A statement from the nonprofit Exceptional Children’s Assistance Center said in an alert they sent out Tuesday, “Under this law, if a student – any student – cannot master a math course even more challenging than Algebra II, they cannot earn a high school diploma.”

And we are back to discriminating, folks. Kids who are not allowed to earn a diploma based on the way they were born, based on their neurology. “Here’s an alternative to a diploma, a certificate of completion, which is like a participation award. That should make you happy,” they seem to say. It’s a case of “raising the standards” to look like you are trying to make things better, rather than addressing the very real issues of poor teacher pay, and lack of funding for even textbooks. It’s a case of caring more about your image than the kids of your state. It’s a case of politicians being so completely arrogant in their righteousness that they are literally doing harm to children.

I couldn’t be more disgusted or enraged.

 

This Battle’s Not for Us

I was thankful for one of The Boy’s former teachers last week. She’s the one they moved to a different school this year, and we’ve missed her sorely.It’s funny to think that when we wanted to move him to his current school, she was not in favor and didn’t think he was right for the program, and she is now one of his biggest advocates.

I voiced all of my concerns over this Occupational Course of Study (OCS) with her – that he wouldn’t be in the least restrictive environment (LRE), he wouldn’t have access to his general ed peers, and he may not be able to take band.

She talked me off the ledge. She made me see some things from a different perspective, and made me realize that if I have to choose, this program could work for The Boy. And that he has every right to be in band, although logistically, he may only be able to be in it for one semester.

And I can live with that, as long as they make the “occupational” part of it something in which The Boy has interest. He won’t be folding towels at the hospital if I can help it.

But that’s not what I’m telling the district. I had contacted the director of special ed, as she had been an ally in getting The Boy his current placement, and had earned my respect. I wanted a meeting, but she said she would call me instead due to expediency. Except that all she wanted to do was sell me the OCS program, and I wasn’t going to let her. I wanted her to explain how it was legal, without placing kids in their LRE. After she figured out I wasn’t going to be sold, she told me she would set up a meeting with the transition coordinator (with whom I already met and wasn’t all that impressed) and the occupational coordinator. She told me she would get back to me the following week. That was last week, and she didn’t.

When I emailed her again yesterday, she said that the transition coordinator had been waiting for my call to answer my questions… What?

I sent an email – you know the one. The one I crafted for an hour, making sure to sprinkle acronym bombs all over the place so she would remember that I wasn’t some ignorant parent who didn’t know anything about student rights or IDEA.

Lo and behold, she was able to set up a meeting after all. For tomorrow. Fancy that!

But, I’ll be honest. This meeting isn’t really for us. I don’t expect them to re-design the entire high school setup for us, because they won’t. I don’t expect them to wave a magic wand and put him in band all year, because they won’t. I don’t expect to hear much but placating platitudes. But I want them to know that I know. And I want them to know that I’m not going away, so that if something isn’t working, I’ll be back. And I want them to know that there is a whole host of kids coming up through their schools, and that if I know that what they’re doing is illegal, they better damn well know that those kids’ parents will know it too. And they better think about just what they are going to do about that.

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