Waiting for a Break

Since November, it seems as if I have a really difficult time writing. Anything. I’ve been working on my second round of edits for one of my novels since April, and so far… Well, let’s just say I haven’t gotten much editing done, let alone blogging.

To be fair, I’ve had some things to deal with, and sometimes, when my feelings and focus are elsewhere, and it’s still really difficult to find the time to write, it starts to feel like a chore, and that is not what I want. So I give myself a little break. Tell myself, “When this passes, we can start again.”

Except that this year, when something bad happens, it has been immediately followed by something worse. Or so it has seemed. I am in a constant state of regret, thinking back to the previous crisis and thinking, “That wasn’t fun, but it’s nothing like what I’m dealing with now.”

Anyway, home is not a terribly comfortable place right now for neither The Boy nor I. The Man is struggling with some emotions, and due to old habits and behaviors, is not dealing with it constructively. And The Boy and I are struggling to stay above it, live our lives as “normally” as possible, and dig deep for patience within ourselves. We’re kind of living “in limbo” waiting for The Man to realize that we are still here and we love him.

Please pardon my absence here. I miss blogging terribly, and maybe someday I will be able to blog through the struggles. Right now, I can’t. But you can sit and wait with me, if you’d like. It’s always easier with friends. ūüôā

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.

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.

 

To the Trendy Boys Being Catty

There was a story circulating Facebook a little while ago about a woman who had given a note to some mean girls she had overheard at a Starbucks. I read it, as well as all of the armchair quarterbacks chiming in on whether or not they would have done the same, and who the hell was this woman, anyway?

Well, she happens to be an author of¬†a book about middle school relationships, and has developed a curriculum for social leadership in schools, so she kind of knows what she’s talking about. I knew plenty about middle school girls being mean, from my own experience, and from teaching middle school for so many years. I did not chime in and become yet another judge like so many choose to do these days. I read the story, thought about it, and moved on.

pexels-photo-87835Last Friday, The Man, The Boy, Grammy & Poppy, and I went out to eat as we are wont to do at the end of the week. We decided to go to a place that is a bit trendy, but also has good food, reasonable prices, and is a favorite among the hipster-ish crowd in the area, small though it may be. The Boy likes it because they have a tabletop multi-cade video game that he can play, and in fact chooses to eat at that table while he’s playing. As we’re eating and enjoying each other’s company, I watched The Boy get up to get more lemonade. And I watched as two boys waiting in line watched him, as well. They seemed to make particular note of his footwear (crocs), and begin making comments to each other.

As I said, I spent many years teaching middle school and high school aged kids, and as a teacher, you get a sixth sense about when food fights are about to go down, when a young couple has broken up, and when someone is getting talked about.

In the article I linked above, Michelle Icard, the woman who “spoke up” at that Starbucks had this to say to critics who questioned why she told the girls they were “pretty”:

“I think it’s an important part of the story,” she said. “I think that’s a way a lot of girls hide their bad behavior, by fitting in perfectly physically.”

And Heidi Stevens, Chicago reporter adds:

“I think that’s true of grown women as well. Heck, men and boys too.”

I know that’s true of boys, too. Down here, it manifests itself in wearing the right shoes (and shin-high socks, apparently).

Did I say anything to the boys? No. They were with their parents, I hadn’t heard anything concrete, and this is the South, after all. One of the boys was wearing a Coors Light ball cap, after all. I doubted Mom & Dad would be too receptive to whatever I had to say. If I had been alone with The Boy, I might have gone over to them and said, “I noticed you admiring my son’s crocs – they’re hard to find these days!” or something along those lines. But I was with my family, and they clearly wanted me to focus on something else.

I can only be thankful that The Boy was oblivious. And I am more certain that this cattiness crosses gender lines, and needs to be addressed more often at home, at school, and by perfect strangers at a Starbucks.

The Principal’s Office

principal's officeI was asked into the Principal’s Office yesterday, and it’s amazing how that still makes me feel in my 40s.

I think many special needs parents go through this experience more often than they’d like, and I wonder how often it’s a power play. I’m beginning to think yesterday’s meeting was exactly that.

If you have followed the blog, you know that The Boy goes to a school across the district, although we live much closer now, because we worked hard to get him placed in a pilot program for those with HFA (high-functioning autism).¬† We were told that the program would likely not only continue at the middle school, but would then be expanded into the high school and elementary schools.¬† Except that it not only wasn’t expanded, it was discontinued this year. Not only did they yank the program and it’s supports, they yanked the autism teacher out of the school, reduced the teaching assistants in the school, and left the kids hanging.¬† Oh and any kids who attended the middle school were now re-assigned to their home high school, putting last year’s 8th graders into a brand new-to-them high school where they know virtually no one.¬† Nice, huh?

And the principal and the vice principal at the middle school retired, too.

Lots of change for The Boy, yet he’s handled it remarkably well.

We’ve had to deal with increased anxiety a bit this year, as will happen with teens on the spectrum from what I hear.¬† He has always hated friends being absent, and had to also deal with one of his close friend-who-is-a-girl moving away with no notice.

This past Friday was a doozy of a day. They had scheduled an assembly, another one of his friends-who-is-a-girl was absent, and he had a big performance with the band that evening at the high school football game Рvery excited, but very overwhelmed.  It was not a good day, and the lead up to the performance was very, very difficult.  I have never seen The Boy so paralyzed by anxiety, and it was heartbreaking.

Yesterday, I had to go in early to make a slight adjustment to the IEP regarding length of time, which really only required a signature, but according to the school required an IEP meeting with three teachers and myself, and ridiculous amounts of paper.¬† I took The Boy in to school. As students started to arrive, he noticed that his friend-who-is-a-girl wasn’t there again, and began to perseverate, become agitated, and look like he was going to bolt.

So when I left his TA to handle it, I went to the office to handle some other paperwork and was promptly summoned into the principal’s office to discuss any “insights” I had into The Boy’s behavior as of late.

I was told he had had four “bad days” this year, which she interpreted as an escalation, and she was wondering what strategies I could offer, as she had limited staff, and basically implied that she couldn’t afford to have her only TA walking the halls the whole day with my child, as happened on Friday. And the TA was just about the only person who could “get through to him”.

Come to find out, she was counting the morning’s troubles as a bad day (not in my book, as he was already in science class by the time I had walked into her office), and another of the “four days” involved her TA being late to her bus route at the end of the day, because The Boy insisted on giving one of his friends-who-is-a-girl a high five before he got on the bus.¬† Problematic to be sure, but again, not a “bad day” in my book.

That left us with Friday. “And Thursday was a bad day, too,” she said.¬† “I hadn’t heard anything about Thursday,” I replied.¬† “Well, it wasn’t as bad as Friday, but it wasn’t a good day.”

As happens so often, I could only formulate what I should have said after the fact. I explained his increased anxiety as of late, and offered that a lack of communication about these incidents and disruptions to his day (like Friday’s assembly) were obstacles to The Boy’s success. I explained that the anxiety was new to us at home, as well, and that I didn’t have any magic answers. And that was about it.

I should have said that her lack of TAs was not my problem. She needs to take that up with her central office. I should have said that four bad days since August meant that The Boy was doing pretty well considering all the change the district had foisted upon him.¬† I should have said that if his current TA is the only one who can get trough to him, then she needed to come up with a plan to address that, as it is her school, her educational facility, and her staff. I should have said that it was the district’s policy to employ TAs as bus drivers that was the problem on the one day, not anything that had to do with me. I should have said that kids with autism will have bad days, and that if she or his teachers couldn’t handle that, then they need more training. I should have said that she needed to be approaching the district autism specialist for strategies, rather than the parent who is not at school on a daily basis.

Needless to say, the meeting left me with a bad taste in my mouth. I’m thinking of writing a follow up email with my list of things I should have said. I’m not sure if it’s worth my time, as it seems she is ignorant of what her role is, and of what appropriate expectations of an 8th grader on the spectrum are.

I am beginning to become resigned to the fact that dealing with the school will be a continuous struggle for the next five years, and that gives me even more impetus to find meaningful opportunities for The Boy outside of the school day, and possibly start our own business to afford him a pleasant working experience. I’m just sorry to see the rampant ignorance that still exists, even within the walls of one of the best schools in the district, and even at the highest level.¬† What more do we have to do??

Turning it Around

Sometimes what makes me most proud of The Boy is when he is able to turn it around. Heading for a meltdown, but able to stop, relax a bit, refocus, and get back to work.

when the school calls...A couple of weeks ago, I was at my desk at home, preparing to go to work. I got a phone call from the school, and it was the counselor (not a usual person to call). She explained that The Boy was in her office because he had gotten upset in Language Arts, and had become destructive, throwing things, and sweeping things off of desks.¬† This is not typical for The Boy unless he is very upset.¬† The counselor said, “He thought maybe he should call you,” and I replied, “Ok…” I was sure he was going to ask me to come pick him up, which I don’t often do, as that would teach him that he can escape the tough stuff. Besides, I have to work, and don’t get paid unless I do, so there’s that.

“What’s up, Bub?”

“Today is the same as yesterday,” he said.

“Does that mean that Friend-Who-Is-A-Girl is not at school today?”

“Yeah. She moved,” he said, whining.

“I don’t think so, Bub. I think she’s just on vacation or has a cold or something.¬† But here’s the thing.¬† I know you’re upset, but throwing things and knocking things off of desks is not a good way to handle your anger, right?”

“Right.”

“And going to school is your job, and you need to be in class, right?”

“Right.”

“So what’s the plan? Are you going to take a breath and go back to class?”

“Yeah, I think I can do that,” he said, and handed the phone back to the counselor.¬† She didn’t sound at all sure that this was a good idea, but I know my son.¬† Once he has decided upon a course of action, he does it.¬† And he did.

The TA emailed me later that day to explain that there had been a substitute teacher in language arts, and she had been called away, so she didn’t want to leave him in class with someone who didn’t know him, and that after we talked on the phone, he had an excellent rest of the day.

I think many of us have a hard time “turning it around”.¬† It’s hard for me to focus on the positives of a situation that is making me tear my hair out, or to switch gears right in the middle of something.¬† But I am so proud of this young man being able to do this.¬† Proud and hopeful.

Some Rough Days

The Boy has been having some rough days at school this week.¬† Lots of talk about people being absent from school, and students who have “left” school and may never come back.¬† None of it is true, but he has emotional reactions to these “events” and we are left to try to figure out what is at the heart of it. Add that to lots of perseveration on his favorite topics, and anyone can see he’s anxious about something.

His teacher emailed me the other day commenting that he seems to let one small correction bother him, and then add real infractions to ensure he gets “punished” or sent home, or some judgement that seems worthy in his mind.¬† I let her know that this is a common occurrence at home, as well.¬† Yesterday, I could tell she was frustrated because her email started with “Another bad morning today…” at 10:07am. Rather than respond, I let it ride. She’s young, and doesn’t seem to have the patience the job requires all the time.¬† Maybe she just needed to vent. I wanted to remind her of Rule Number 1: Behavior = Communication, but I didn’t.¬† People don’t like it when you tell them how to do their jobs.

crabby

And sometimes he’s just crabby… Kiddos on the spectrum are allowed to have emotions, too.

I’m not sure what’s going on with The Boy, but he seemed much happier yesterday afternoon than he has been in about a week.¬† I hope that whatever has triggered this latest round of rough days has resolved itself, but only time will tell.¬† The Boy and I did talk yesterday evening, and I got the sense that we had turned a corner.

Sometimes we figure it out, and sometimes we let it ride and walk on eggshells for a bit. As our very favorite teacher always used to say, “Tomorrow’s another day.”

Book Club Discussion: The Reason I Jump, ‚ÄúNever-Ending Summer‚ÄĚ Part II

I’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, hireasons thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 32 asks about what those with autism see first when they look at something. ¬†Naoki reinforces what I have heard in many places, that those on the spectrum see the trees first, and then the forest; the details before the whole. ¬†He also says they tend to “drown” in the particularly striking characteristics of those parts, and it tends to be harder to see anything else. If someone you love is on the spectrum, you will have, no doubt, experienced the attention to detail. ¬†The Boy is always drawing my attention to some small part that I never would have noticed without his help.

Question 33 asks about appropriate clothing, and why this can be a struggle for those in the spectrum. ¬†Naoki says they know and understand why we wear the things we wear, but that they “forget” what is appropriate, and how to make themselves more comfortable. He also explains that those who choose to wear the same thing each day (we have had our battles with this, for sure!) feel like their clothes are an “extension of our bodies,” and a guard against changing situations.

Question 34 asks about perception of time. Naoki says, “the fact that we can’t actually feel it makes us nervous,” and this makes perfect sense to me. ¬†Timers help many on the spectrum have a sense of passing time, especially those that are visual in nature. And because the future is uncertain, it is a cause for a great deal of anxiety. ¬†This is one of those answers in this book that just “clicked” for me, a true “A-ha!” moment.

Again, this book is a source of inspiration and wonder for me, and may be the closest I’ll ever get to reading The Boy’s own mind. ¬†Not every person on the spectrum is the same, but these answers are food for a great deal of thought, and foster greater understanding and patience between me and my son. ¬†I highly recommend this book.

Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part I

reasonIt’s been quite a while, but I‚Äôm continuing the discussion here today because¬†The Reason I Jump¬†is an important book.¬† Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else‚Äôs on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

When asked (Q25) Why he jumps (or stims), Naoki says that those on the spectrum “react physically” to emotions, and that their bodies at that point do not allow them to move as they wish. ¬†Jumping allows him to shake “loose the ropes that are tying up my body.” This is an interesting perspective and while it goes along with the accepted understanding that stimming “feels good,” it adds a piece that wasn’t there before – it feels good because it is an attempt to free oneself from a body that doesn’t react exactly the way one wants it to.

Question 27 asks Naoki why he covers his ears. ¬†He explains that it isn’t the volume, but rather that the multiple noises become disorienting and scary. ¬†Covering his ears restores his sense of where he is, and allows him some control over his surroundings. ¬†I think we often forget what a struggle it is for many of our kiddos on the spectrum to process sensory information that has absolutely no effect on us neurotypicals. ¬†Add that to my list of basics I tend to forget!

In his answer to Question 28, Naoki reaffirms that many on the spectrum have no sense of where their limbs begin and end, and that results in awkward movements and the inability to know when he’s even stepped on another person’s foot. ¬†This is why I think The Boy loves water as much as he does, because it provides that constant sensory input to let him know where he begins and ends.

Question 31 deals with eating and why some on the spectrum are “picky.” Naoki says he doesn’t really have this issue, but understands that for those that do, “only those foodstuffs they can already think of as food have any taste.” ¬†Everything else, i.e. new foods, are received as play-food that doesn’t sound too tasty. ¬†He hypothesizes that it may just take more time for them to “appreciate” the taste of unfamiliar foods. ¬†This explains a lot. Often, if I can draw a connection from one food that The Boy likes to eat to another unfamiliar food, he is more willing to try it, and this explanation is a pretty good one, I think.

There are a few more questions in this section that I will tackle next. ¬†This is one of those books that is great to read, and re-read again and again, as you’ll pick up something new each time, I think.

Behavior Analysis for Dummies

I opened yesterday’s post with a series of oft-asked questions of parents of kiddos on the spectrum, the biggest of which I suspect is “Why in the hell is he doing that?”

There’s a lot of guilt one feels as a parent to a kiddo on the spectrum. ¬†After the meltdown, or public incident, or whatever the negative behavior that just occurred was, we often think, “Was that my fault? ¬†Did I do something wrong that caused that?” While feelings of guilt are rarely productive (although feelings are feelings and we can’t control them, really), this questions is a good starting point for a little behavior analysis.

You see, most autism parents already do this naturally, but may not know it had a name.

observation.jpgWhen your kiddo starts to have a problem at school, the IEP team may suggest a functional behavior assessment. ¬†This is where someone (probably with a lot of credentials) will come in to observe your child over several days, and collect data about his/her schedule and routines, and more specifically, exactly what happens before the negative behavior occurs. ¬†The reason they do this is to figure out the “trigger” for the negative behavior, so that we can better understand what the child is attempting to communicate through the negative behavior, and then plan strategies to avoid or minimize the trigger so that the negative behavior decreases, or plan strategies for how the kiddo can cope with a trigger that cannot be reduced or avoided.

Let’s say I get a phone call that The Boy is repeatedly attempting to escape from science class (yep, this happened in real life). ¬†A functional behavior assessment would serve to identify if this is occurring at a consistent time, and what the cause might be – is it another child with lots of body spray sitting next to him? Is it the brightness or noise of the projector that is turned on next to his seat at the beginning of class each day? ¬†Does he have to pee? ¬†Does he have anxiety about being late to his next class? ¬†Does he feel like he is missing something important elsewhere in the building? Is he frustrated because he doesn’t understand the material? Is there too much handwriting so he is falling behind? ¬†Through observation, they can determine what the constant variable is whenever he escapes, and then come up with a plan (move the projector, move his seat, allow him to use a study buddy or word processor to take notes, have a talk with the teacher of his next class about being welcoming and not marking him late, or allow him to use the restroom when he needs to, rather than at passing time). ¬†Strategies often include the use of motivators and rewards, as well, to give your kiddo positive reinforcement to keep up the good work.¬†For instance, if The Boy uses the strategy put in place, and stopped escaping from science, he could earn some extra iPad time in social skills class.

You see, we autism parents often do the same thing at home. ¬†It’s how I know to expect some hyperactivity after we have Goldfish, especially the multicolored kind – I discovered that through careful observation of my own. The¬†triggers for negative behavior I mentioned yesterday came from careful observation of my own, as well.

So if you are ever ready to throw your hands up and scream “WHY??”, take a deep breath, grab a notebook, and start observing. ¬†You already do this fancy thing called Behavior Analysis, and no one knows your kid better than you. You are no “dummy”. ¬†It may take days, weeks, or months, but you’ll get to the bottom of it. You got this. ūüėČ