End of the Week Cha-cha

Posted on September 23, 2016 by simpleijustdo

stairs-man-person-walking The 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

Posted on September 9, 2016 by simpleijustdo

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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

Posted on September 1, 2016 by simpleijustdo

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.

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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The Boy, The Teacher

Posted on August 25, 2016 by simpleijustdo

One of The Boy’s areas of intense interests is (and I believe always has been) cars and trucks. He knows an incredible amount about makes and models, when they were produced, and various other trivia. He can even identify cars makes and models at night. How he does it, I’ll never know.

Yesterday, we were at a traffic light, and to engage him in conversation, I remarked on the bright blue car waiting at the red light across the intersection. “It’s a Dodge, I think,” I said.

“Yep,” he said.

“It’s either a Challenger or a Charger. I can never remember which is which,” I said.

“It’s a Charger. You can tell because it has a rounded top. It also has four doors. The Challenger has a square top and two doors.”

I looked at him, amazed. He was teaching me how to differentiate between two car models. It was clear, simple, and he had taken advantage of a teachable moment for me. I sure hope we can figure out something meaningful for him to do post-high school, because he has so much to share with this world. Me included. 🙂

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He’s Excited. I’m Scared.

Posted on August 23, 2016 by simpleijustdo

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.

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

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.

There’s Hope Here

Posted on August 5, 2016 by simpleijustdo

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!”

Posted on August 2, 2016 by simpleijustdo

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.

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

Posted on July 28, 2016 by simpleijustdo

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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