Communication Skills

Today’s timeline:

10:32 AM – I get an email from The Boy which seems to indicate that A) someone told him drivers’ ed is not available for him – unsure if they told him “never” or “not right now,” and B) someone told him that he can’t hug girls – an ongoing issue that the school has admitted they have no idea how to handle. Two negative interactions with authority figures, and he is upset.

11:18 AM – The Boy’s Business teacher emails me and the special ed teacher to say he had arrived 15 minutes late – an ongoing issue that I don’t believe has even been addressed, other than to mark him absent (?) – and also that The Boy sat down and began to “color.” When asked to put it away, he got angry and left class. (Why they insist on saying “color” and “coloring” as if he’s a toddler, I don’t understand. It’s super dismissive. He is drawing, but I digress.)

11:27 AM – The Boy’s special ed teacher responds, asking if he returned to class because he had brought his “coloring” stuff back to her room and left again.

12:09 PM – I respond asking someone to update me, and if my son is ok.

It is now 12:35, and no one has responded to me.

If he had an aide, like he had in middle school, the aide would have known he needed to decompress upon entering Business class, and explained to the teacher to let it go this time (and indeed, would have made sure he was on time to class). If he had an aide, she might have been able to help him regulate his emotions so he could stay in class. If he had an aide, they would no where my child was. If he had an aide, maybe she could respond to me to let me know my son is safe and sound.

Three weeks ago, something similar happened when he got upset upon boarding a bus for a field trip and noticing the girl he has an interest in was absent. I received emails from him saying he got left behind, that he couldn’t find his special ed teacher, yet no email or notification from the school. When I called, the secretary kept trying to put me through to the special ed teacher’s room, and there was no one there. Finally, I sent my mom over to find out if they even knew where my son was. He had started walking toward the highway, and the new assistant principal (who kept advocating for him to just go home with my mom) didn’t alert anyone that she had him. The principal and the police liaison got in a car to go find him… After my mom arrived, SHE called me to update me, and it wasn’t until much later that the principal called to tell me what had happened.

I shouldn’t have to wonder about my son’s whereabouts and safety. I shouldn’t have to contemplate a $500 monitoring system like AngelSense because school personnel can’t be bothered to let me know what’s going on.

I think The Boy is much better communicating, at this point, than school personnel. When/if they get back to me to let me know my son is safe, I’ll be requesting a meeting, ASAP. This is beyond the pale.

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Biting My Tongue

My fingers are itching. Itching to write a response to an email. I’m refraining. It’s a Herculean task, but I’m managing.

After two days of just trying to keep my kid in the school building due to his raging anxieties about the absences of his teachers and friends, I get an email from the-special-ed-teacher-who-has-no-clue. “Up until today, he has consistently missed class since spring break due to stress,” she writes. She says she and the aide have been “unsuccessful in getting him to complete anything in class.” She ends with, “Please continue to encourage him to come to class and just do his best. I keep reassuring him he will not fail class as long as he is showing up and doing his best.”

Have you seen the funny videos where husbands and wives text each other, but you get to see the various things they’d like to text before they are deleted and something more appropriate gets sent?

Yeah.

“Damn skippy he’s not going to fail…”

“Do you even know what fight-or-flight is?…”

“That’s right – YOU’VE been unsuccessful…”

“HE HATES SCHOOL BECAUSE OF YOU…”

“Do you even have a working definition of autism in your tiny little brain?…”

Nope. Nope. Nope. Can’t send any of that.

That’s why my fingers are itching. She’s gonna be my kid’s teacher for another 3 years and 22 days.

Not gonna reply.

Heaven help me.

Planning for Parents

I know I’ve talked a bit here about planning. It’s become a bit trendy nowadays, but I have needed and used a planner since my undergrad days, with rehearsals scheduled thither and yon, and assignments due; as my husband says, “people to see, things to do, and dogs to scratch!”

That said, figuring out how to organize all the parts of my life – it’s still a challenge. I’ve been bullet journalling since November of 2015, and found that it really works for me. I’m much more able to keep track of when things are due, upcoming events, and even tracking how often I do x, y, or z, which can come in very handy when I’m, say, working on a goal to read more, or exercise more, or be a better human being.

Recently, I’ve decided to track my moods, as well as the moods of those in my household, as their moods have an effect on my mood (as I’m sure you’ve experienced), and also because I’m getting to that age where moodiness is part and parcel of being a woman and all of the lovely things we go through that bewilder the men in our lives. I realized tracking “moods” would be an excellent thing to do for The Boy, and would help us spot some triggers. The more I thought about it, the more I liked the idea of setting up a “home base” journal for The Boy: notes from meetings, school schedules, records of emails from him (a strategy he uses to regulate when he is upset at school), “hang-out” dates, progress on our Independence Challenge, and plans for the future. Now that we are tracking work and volunteer hours for his high school program, this journal will be perfect for that, too.

Some planning friends suggested that, ideally, The Boy would do this for himself, to which I replied that just getting him to do homework was like pulling teeth, but I think I can find some common ground by letting him know I’m doing it, and allowing him to see, add or change things as he feels the need.

I found this excellent resource for autism parents of any age that would like to do something similar over at andnextcomesl.com – a site that’s new to me, but looks like a bevy of great resources.

When I get it set up and operational, I’ll make sure to come back and share what’s working, what’s not, and how it’s helping me be a better parent (I hope!) 🙂

 

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.

 

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.

Band Plan

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?

IMG_5331I 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?

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.