Change, The Only Constant

A year ago, I posted about my parents moving in. It has been so, so good for all of us. I realize every day how lucky I am to get along with my parents so well. Emotionally and mentally, I am better than I was. I think The Boy is better, as well. We both have fantastic therapists, and are involved in our hobbies (Tae Kwon Do for him, and writing for me).

But change is constant, isn’t it? And when I posted a year ago, I alluded to more plans in our future. Well, things are FINALLY starting to roll. I am purchasing a 35′ camper early next week that is stationary at an RV park nearby. This is where The Boy and I will live for the next year and half!

Downsizing to 285 square feet presents its own challenges for anyone, and for The Boy, we’re considering just which belongings will come to the camper, which will not, and just how we’ll manage all the new ways of being in our tiny home.

We are also selling our current home and shopping for a home about 5 hours away in a college town/state capital that has multiple Targets and even a Whole Foods. Civilization, y’all. Grammy & Poppy and the kitties will move in there and get it ready for us.

I’ve missed living in a city. But more importantly, as my parents age, and my son ages out, I’m going to need some help, some resources, and some respite. I can’t get any of that where we are. The Boy will need to find meaningful work – there’s nothing remotely like that here for him. The people there are diverse and tolerant. The people here are significantly less so.

Today, The Boy’s room gets painted a boring beige in preparation for showing the house. This is his biggest anxiety about our current changes. He loved those Toy Story clouds on blue sky ❤

New adventures for us on the horizon. I’ll keep you posted! blue-sky-clouds-countryside-1048039

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Time for the Truth

It’s common in the autism community to hear that as our kiddos get older, the challenges just change. They’re no more difficult or less difficult to handle, they are just different. That’s what you hear, and it’s supposed to be reassuring, I guess.

And maybe that’s the truth for some people. Maybe even most.

But I can’t say that’s been our experience. Things are harder now than they’ve ever been.

And maybe that’s not all autism’s fault. I’m sure the fact that I keep marrying losers who leave doesn’t help, and moving to a state that has substandard resources and a less than stellar educational system contributed. But at the end of the day, autism itself isn’t what has made things so difficult. It’s the anxiety.

Anxiety often shows up on the coattails of puberty, waving at you with a smug look on its face, saying, “I’m moving in and taking over now. Take a seat.” It shoves you down on the couch, flexes its muscles and commences to shattering and dismantling progress you’ve made, trust you’ve built, and your sense of safety.

The Boy is on medication for anxiety in addition to the meds he’s taken for a long time to help him focus at school. The medication helps. Most of the time. But there are times when the anxiety is too strong, and it combines with the confusion caused by being wired differently, and the roller coaster ride sets off. Every three minutes, a wild mood swing, sometimes accompanied by erratic behavior and lashing out, physically and verbally. And you just have to hang on for dear life until it ends, which is sometimes hours, sometimes days. And by “hang on,” I mean worry as hard as you’ve ever worried about your kiddo before.

And when things have calmed down, you find that you are a special kind of tired you’ve never been before. Physically and emotionally, a bone-weary tired that makes you fear going home because there might be a turnstile at the door, with another roller coaster ride waiting for you.

I’ve heard in the autism community that the anxiety lessens as they get older. And maybe it does for some people, maybe even most.

But what if it doesn’t for us?

Tracking

A big component of my plan to start a planner of sorts for The Boy is tracking. I would like to track several things like his diet, his moods, and the-results-of-his-digestive-system-if-you-know-what-I-mean.

In fact, I’ve already begun tracking something that has given me insights. If you’ve spent any time on this blog in the last couple of years, you know that emailing me has become a calming strategy when his anxiety gets the best of him at school. It came from a bit of self-advocacy, and it has worked well. The number of emails I get in a day also correlates to the “quality” of the day: more emails means more anxiety and less learning, fewer emails means less anxiety and more learning. It’s a loose correlation, but it’s there.

In prep for our meeting with a new therapist tomorrow, I went back through my emails since the beginning of the school year and did a simple tally, putting it in calendar form. Just that simple act allowed me to see…

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Whoa. Mondays have been a bit of a problem! I would do well to work more at home on Sundays, preparing him for the transition back to school, it seems. Wednesdays seem pretty chill, and then the anxiety comes back on Fridays, I’m guessing when parents pull his friends out of school for the weekend… Wish I had done this sooner, but at least there is benefit in the tracking, and I have high hopes for my planner.

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.

CBT & Flexible Thinking

As The Boy gets older, his anxiety becomes a bigger and bigger challenge. Since elementary school, he has had a preoccupation with absences at school. Not only his (he can tell you what date he had a dentist appointment and missed a day of school in second grade), but those of other students and teachers, as well. This preoccupation has become so intense over the past few years, that it has induced some anxiety attacks and meltdowns, interfering with his ability to function at school.

After a little research, Cognitive Behavioral Therapy seemed to be the way to go, and I went looking to see if there might be some therapeutic activities I could foster at home to help him become more flexible.

We are trying a visual weekly calendar (not monthly so it’s not too overwhelming), so he can see what is planned for the week. In addition, we have a post-it note where unexpected events are listed and crossed off upon completion. This is so that he has a regular spot to which he can refer to see and reassure himself about the change. And because these “unexpected” events occur quite often, hopefully he will begin to see that life goes on when these things happen, and as we say around here, we just have to “roll with it.”

I tend to forget how powerful visual images are for The Boy. I’ll keep you posted on how it goes!

 

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.

 

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

Negotiations

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??”

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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 😉