Monthly Archives: August 2016

An Unexpected Hiccup

Posted on by

0

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.

The_Big_Brass_(8101293170)

The Boy, The Teacher

Posted on by

2

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. 🙂

CHARGER-VS-CHALLENGER-HELLCAT

He’s Excited. I’m Scared.

Posted on by

2

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

Negotiations

Posted on by

0

Yesterday, Grammy and I were texting back and forth regarding strategy to try to get The Boy to take the immunizations. She told me she wasn’t sure she could convince him to go ahead with the three shots he needed. “Bribery?” I suggested. I also let her know we could rescheduled if he just wasn’t ready.

She suggested to The Boy that if he went through with it, she would take him to his favorite place for lunch, a restaurant with pizza and video games called Ioanni’s. His reply was classic, “I’ll do lunch at Ioanni’s, but I’m not doing shots!”

Needless to say that was exactly how it went down, and when I picked him up, he was no calmer about the prospect of shots. He insisted that he was too old, and that he would have to miss school, as he did the last time. In the meantime, he had gone to the bathroom and put a bandaid on his leg to convince me he had indeed already had them done! Then he insisted we get them done on the Friday before Labor Day, as he had done before… In these situations, asking why will only make your brain hurt, so we just roll with it.

 

I told him they may not be open that Friday (I really just wanted him to get them done before school starts), and had already rescheduled him for this Friday – could that be our plan B if they weren’t open the Friday before labor day?

“Can that be our plan C??”

wood-cube-abc-cube-letters-48898

So many backup plans…

“What would plan B be then, Bud? If they aren’t open on the Friday before Labor Day, when would you feel comfortable going?”

At first he said next Friday, but when I reminded him that he has a marching band show that night, he quickly changed his mind and said this coming Monday. Why? Again, I don’t go there.

I asked him several times if he was sure, and reiterated all of our plans to him a few times last night to make sure he was feeling comfortable about all the options. And this morning I called to reschedule for Monday.

What doesn’t seem rational to us neurotypicals makes perfect sense to him. He was just using reason in his own way. I’m glad we could negotiate a settlement, regardless 😉

Heads Up

Posted on by

1

Grammy took The Boy to a doctor’s appointment today. She does that for me in the summer so I don’t have to take time off work. And I don’t really need to be there unless I know something big (like shots) are happening. If all we’re doing is weighing and measuring and asking if everything is going well, Grammy can handle that.

Except when they don’t tell you in advance that shots are necessary.

doctor-medical-medicine-health-42273Three shots, to be precise. When Grammy texted me, I thought, “Maybe he can be coaxed into it, but my guess will be no.” I was right. She took him to lunch, and I called to reschedule.

It’s the preventable stuff that just kills me. Because it doesn’t have to be this way. I get that your office is busy. I know medical receptionists have a lot to do. But is it possible, just maybe, that with your patients on the spectrum, you could give them a heads up, so we don’t have to waste all this time and unnecessary anxiety?

I know what I ask seems outrageous, but in this day and age of “patient portals” (ours currently doesn’t work), and texts to remind us of appointments, maybe it’s an overlooked possibility. I’m just sayin’…

I Had to Block My Aunt

Posted on by

7

Recently, I wrote about my need to get political here. I mentioned that I am not shy about politics on my own personal Facebook feed, and that while courteous discourse is always well received, I tend to “unfollow” friends who post obnoxious, hate-filled memes and stories with less-than-credible sources.

This election, and one candidate in particular gets my blood boiling, for many, many reasons, the most important of which is that he mocked a disabled person on national TV.

How you treat others is very telling of your inner dialogue, your conscience, your humanity (or lack thereof). When “the others” you are dealing with are children, animals, and people with disabilities, it is very telling, indeed.

So when an aunt of mine (who I have already “unfollowed” long ago) decided to send me messages with stories about this particular candidate to apparently show me how he wasn’t really racist, I responded. I told her that, with all due respect, she and I would never agree politically, and that this candidate is a dangerous, selfish, narcissistic xenophobe with a long history of making racist and sexist comments. I told her that if she chose not to see that, it was her choice, but out of respect for her great-nephew with autism, a disorder that this candidate erroneously and dangerously attributes to vaccines, I ask that she not send me these messages.

Her response was the same response you often get when challenging someone who uses the r-word: “I only asked a question – no need to explode over this.”

Those of us who live with a special needs child do not have the luxury to be lax with our opinions. I’m pretty sure I won’t live forever, which means that my son’s future is in the hands of others. And if those others think for one second that it’s not a big deal when someone openly mocks a disabled person or espouses junk science, someone who could have a very direct affect on my son’s future through messing with medicaid coverage or social security disability, or education funding, or mental healthcare, or caregivers wages… It’s my job to help you understand that it is a VERY. BIG. DEAL.

And that fact that I haven’t “exploded” on you already is a testament to my patience and mental fortitude. Check your privilege. I don’t have any more time for your nonsense.

It’s Going OK, I Think

Posted on by

0

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?

IMG_5598

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.

 

Everyone’s a Jerk Sometimes

Posted on by

2

The Man is definitely not an auditory learner. I’ve learned this the hard way a few times lately. In the latest instance, he wanted to order a septic system doohickey for work, but doesn’t have a functioning laptop, and asked me to look up the item in question. After doing so, and me reading stuff I didn’t completely understand from the screen, he said, “Order it!” excited that he could maybe create a few more job opportunities using this doohickey.

When the doohickey came on Saturday, he was amazed at the size. “Well, you did order the 100 foot version,” I said. “I didn’t want that one. I wanted the 50 foot version,” he said. I thought, “What? I read you what was on the screen! What didn’t you understand about it being 100 feet long?” but I said, “Well, we can return it if you want. It would cost us about nine dollars to ship it back.”

“Let me think about it,” he said.

This morning, he threw the box away and attempted to use it at work. He called me and said, “They sent the wrong thing! This thing is a different type of doohickey than I needed!” (paraphrased)

I said, “But it says right here in the description that it is supposed to work with your other doohickey.”

He said, “Well, it’s not the right thing, and I have to buy this other thing which costs $37 and we just need to send it back.” He was clearly frustrated and quickly got off the phone with me (we usually say “I love you” and when he doesn’t, I know he’s ticked off, usually at me).

And I thought, “Well, that was kind of jerky. It’s not my fault you didn’t pay attention and the doohickey isn’t what you thought it was.” My feelings were a bit hurt. And then I remembered back to this weekend when I snapped at him when I couldn’t locate my debit card and he said, “You lost your card?” Ooh, I let loose a little on that one (the card was just in the wrong pocket in my purse, but caused an overabundance of anxiety for about an hour).

I apologized later for snapping, just as he will apologize later for “being a little short” with me. We’re all a little jerky sometimes. You can’t expect your partner to have a perfect record in the emotional management department, especially when you are a little shy of perfect yourself. As long as apologies are forthcoming, and there was no intent to harm, I think you’re doing quite well. You’re doing even better if you can recognize what’s going on and make a mental note to work on that emotional management stuff.

There’s Hope Here

Posted on by

0

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…

 

The_Big_Brass_(8101293170)

 

P.S. The ex actually sent me a check to pay for band camp… Will wonders never cease!

Inclusion Starts with “Hello!”

Posted on by

1

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.

IMG_3890

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.