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The Long Weekend

  • Posted on November 28, 2014 at 10:00 AM

Now that the holiday is out the way, the boys are eager to enjoy their long weekend. There was a time not so very long ago that the disruption such a change represents would be traumatic. I remember times when each boy (though never all at once) would begin any long weekend by getting ready for school, as best as he could, all by himself as a sign of defiance, if you will, against the change in schedule.

Sometimes that simply meant putting on his backpack. Other times it meant getting dressed, including snow pants, boots and a winter coat, all by himself. I would coax, explain, and coax some more. Finally, I’d leave him be until he gave up on school and decided to play. One time Alex went around in coat, shoes, and backpack until well into the afternoon. Every time the front door opened, he’d go see if his bus had finally come. Eventually, though, they always gave up.

Things are very different now. Even though children with autism do not follow the developmental trajectory of their typically developing peers, they do develop—at their own pace, in their own time, and most definitely in their own ways. Now, the boys enjoy the long weekend. They’re perfectly happy to play all day long. So, that’s what they’ll be doing today and for the next two days. Still, they’ll be happy to return to school and their normal routines until the Winter Break comes.

Is It Just Me?

  • Posted on September 15, 2014 at 8:56 PM

eBooks are the way of the present and will, I’m told, become more prevalent in the future. There are a lot of reasons why authors are particularly eager for the acceptance of the ebook. It allows them to reach out directly to their readers. As a writer, I share their enthusiasm—until I have to read one.

A friend of mine wrote a novel and published it as an ebook. I bought the ebook and began to read it, got frustrated, and then distracted. There was nothing wrong with the story. For as long as I could forget the screen, I could get into the story. Then it would be time to “turn” the page. It made it all-too-easy to put it down.

That was before my diagnosis of fibromyalgia, which means it was before I started to have to really think about what encourages my own productivity. Recently, I had two ebooks I was supposed to read for my course work. I tried and failed. I literally could not get past the first page.

One of the reasons for my failure is that the system wasn’t user friendly. The publisher who made the book available as an ebook clearly cared more about protecting copyright than they did about the readability of their ebooks. For example, I couldn’t access the ebook via my Kindle. I had to zoom in to see an eighth of the page at a time to read the thin, gray text. Every time I tried to scroll to a different part of the page, it reset me to the top of the page. It was a “horrid unpleasant” experience.

Another reason for my failure was that, inconvenience aside, I couldn’t concentrate on the text in this format. This is kind of peculiar, because I read text online all the time. I realized, however, that my brain has different modes for reading different things. The mode for reading novels is different than the mode for reading text books. The mode for reading online is different from either of them.

As I considered this issue in more depth, I realized that there are lots of things I have avoided reading online. If I get a short PDF, I will waste the paper and print it out. If, however, it is a lengthy blog post I’m fine reading, then it’s fine for me to read it online. I can read online news article just fine, but I can’t get in the right reading mode to really enjoy an online short story. This has been true for a long time and it’s become more pronounced since the onset of my fibromyalgia.

I broke down and bought the text books, because I realized that was the only way I was going to get through this class. I’ve realized that the mode I get into when reading course materials and fiction, while different, both involves being unaware of my surroundings and becoming immersed in the material. This is not possible when I’m online, accessing the material via my computer. I assumed my discomfort would change with increased exposure, particularly on the Kindle, but I’m beginning to wonder if this is just one of the quirks of being me.

I can’t help but wonder: Is it just me?

Time to Shop

  • Posted on August 6, 2014 at 10:00 AM

As those of you with school-age children will know, it’s time to do the before-school shopping, where you get all the school supplies the school says your child will need for the year, as well as a closet-full of new school clothes (if you can afford that sort of thing). In a household with children with autism, this ritual is modified. While the modifications depend entirely on the child, here are a few things that might occur:

  • Your child does NOT want new clothes—no matter how cool they happen to be. Even new socks and/or underwear can ramp up the before-school anxiety.
  • Your child does NOT want a new backpack—even if the old one is falling apart and held together with duct tape.
  • If your child MUST have a new backpack, then it MUST be the same style, size, and color as the backpack that is being replaced.
  • If your child MUST have new clothes, then the outfits should emphasize comfort and should not be stress-inducing or exciting; whether the clothes are “cool” or not may not matter to your child.
  • Your child may require a set of “school” supplies for home, as well as for school, because paper, pens, pencils and crayons are always welcome. Your child might “break into” his or her school supplies if a set of the most desirable items is not purchase for immediate, at-home use. This can also reduce anxiety about going back to school.
  • Your child does NOT want a new pair of shoes—even if his or her shoes are too small or have holes in the toes and in the soles.
  • If your child MUST have new clothes/shoes, then they should be as adaptable as possible, meaning that it is ill advised to get a new summer set and then, later, a new fall set. If possible, get a new set that will be adaptable until the next growth spurt, adding new items as the seasons change.
  • Your child may have absolutely no interest in going shopping with you; the added stress of shopping on top of the near-constant back-to-school stress may be too much for your child to bear. If your child says, “No” in any way, shape or form, honor that choice if at all possible.
  • If your child MUST go shopping with you, please respect your child enough not to drag him or her to multiple stores in pursuit of the best deals—the cost savings is not worth the stress this will cause your child. If possible, avoid peak shopping times.

For many children with autism, going back to school is stressful enough. For many children with autism, going shopping is stressful enough. Combining the two is a disaster waiting to happen. Please honor and respect your child’s needs during this stressful, anxiety-ridden time.

The New Normal Begins Now

  • Posted on September 4, 2013 at 10:00 AM

School has officially started for all of my family that is in school. I estimate that it will take between two weeks to three months (depending on the individual) for us to adjust. But we’ve done it before, many times, so I’m confident that we will adjust. We’ll find our new normal. We’ll make it good!

The Year Ahead

  • Posted on September 2, 2013 at 10:00 AM

Before the new school year begins, I wanted to take a moment to share what I hope we can accomplish this year.

Ben

I hope Ben adapts well to his new environment and that his new teacher is really committed to meeting Ben’s needs. I hope this year is focused more on academics and less on coping. I hope that by the end of this school year, Ben makes the academic progress he is truly capable of making.

Alex

I hope Alex gets into the communications clinic and that we successfully match him with appropriate communication equipment. I hope that he learns to use the equipment quickly, so that he can better communicate his wants and needs. I also hope that, by the end of the year, he’s graduated to using the equipment to communicate what he knows and what he’s learning, so that he too can make the academic progress he is truly capable of making this year.

Willy

I hope Willy adjusts to high school quickly and finds it a welcoming and enriching place. I hope we succeed in preventing or squelching any bullying that may occur. I hope that Willy gets enough of computer programming this year to know if he really wants to set his heart on becoming a video game designer. I hope his drawing teacher can help him further develop his artistic talents.

Brandon

I hope Brandon finds the right balance between school and work, and school and his social life, and that he makes school a bigger priority in his life. I hope that Brandon actually makes the effort to do his work, keep up with his classes, and get the grades he’s capable of getting. I hope Brandon discovers what he wants from his future and finds a productive way he can pursue it.

Stephanie

In turn, I hope to find the right balance among family, school, work, and leisure. I cannot afford to burn-out and I don’t want to let any of my responsibilities slip. I hope, by the end of this year, I prove that I am up to the challenge. I also hope to have two of the four books I’m working on published and available to readers by the end of this school year.

Mark

I hope Mark is able to find his joy and to fill his “school time,” when the rest of us are occupied, with something that helps him feel personally fulfilled.

April Showers

  • Posted on July 5, 2013 at 10:00 AM

I had already graduated from high school when Columbine became short-hand for school massacre. For a single year, I had attended classes in a fairly rural high school; due to the poor academic offerings, I took college classes for the remainder of the last two years of my high school experience and only went to the high school building to fill out paperwork. Still, I remember very little security in my high school building.

Yet, there was abundant evidence of the potential for violence in my high school. Although we didn’t have gangs—at least none that I ever knew of—and there was relatively little blatant crime, bullying was rampant and went unchecked. Walking through the halls, I heard everything from threats laced with racial slurs to plans to get girls too drunk to realize they were having sex. It was an unpleasant place and I was happy to escape to the more civilized college environment.

When I heard about the Columbine shootings, I found I wasn’t as surprised and shocked as others seemed to be. I could imagine it. I could kind of, sort of understand it. Not that I had ever even entertained such an idea. But I knew people who might have and I understood why they would think about it. And I knew, if they had been pushed just a little bit further, they may even have acted on the impulse.

With all the violence that’s been going on in our society, I’ve shied away from the gorging of the media frenzy. I don’t like the way “freedom of the press” has been transformed into a form of harassment and invasion of privacy, whether it’s celebrities or disaster victims, man-made or otherwise. I also don’t like the way so many try to “cash in” on these disasters, either for profit or for political gain.

So, I was kind of surprised to find April Showers in my Netflix queue. It’s a movie about a school shooting. I wondered why I put it in there. I looked it up and found out that it was written and directed by Andrew Robinson, a Columbine survivor. Then, I remembered that the movie had been recommended in one of my classes.

Art is one of the ways we try to come to terms with the incomprehensible reality that surrounds us. April Showers is an honest exploration of a traumatic event, capturing the horror and the aftermath without relying on gore or sensationalism to tell the story. Life is full of consequence. If we thought a little more about it, then we’d all be able to live better lives.

Waiting on Summer

  • Posted on May 24, 2013 at 10:00 AM

I’ve had enough of this school year. I’m ready for summer. I’m ready for the boys to be home. I’m ready for a sense of predictability and stability to rest on my household.

This is an odd feeling. Usually, by this time, I’m ready for summer because I get tired of trying to live on other peoples’ schedules: like the start of the school day and the somewhat predictable arrival of the buses. I get tired of the early mornings and the rush to get ready.

But, nope, this time it’s the fighting with the schools and the unexpected calls to come pick up my kids. Even though those are stopped, the anxiety of those calls lives on. It could start up again any time. It’s not like there was rhyme or reason to it.

I’m ready for it to be done. I’m ready for it to be summer.

FBA Times 3

  • Posted on March 20, 2013 at 10:00 AM

FBA stands for functional behavioral assessment. It’s a tool the US public school system uses to analyze behaviors that impact educational performance. The inputs consist of various analyses, performed by various people, all of which are intended to identify and explain problem behaviors; this is similar in nature to the analysis that should be done throughout an ABA program (autism treatment). The idea is to determine what function a child’s behavior serves in the mind of the child; thus, you are assessing the function of a behavior, i.e., functional behavioral assessment.

The FBA culminates in a team meeting (or several), during which the team discusses what was learned through the FBA process, what may still need to be learned, and makes decisions on what can be done to prevent/reduce/eliminate these behaviors. These decisions make up the BIP or behavioral intervention plan, or the planned strategies to intervene to address problematic behaviors.

The concept itself seems pretty self-explanatory, and yet it seems that a real FBA is hard to come by. The reason for this is because it’s far too easy for people, including special education staff and parents, to assume that a behavior is “naughty” and to focus on ways to “correct” that naughty behavior. Unfortunately, this often leads to punishment, which doesn’t really correct the behavior. You see, behaviors—even undesirable behaviors—serve a purpose. If you don’t understand that purpose, then you cannot teach a more appropriate behavior. If you don’t teach a more appropriate behavior, then chances are the child’s needs will go unmet and the child will either persist with the undesirable behavior or develop a new behavior to attempt to meet the need—i.e., to fulfill the function of the behavior.

All three of my boys are having a rough winter. All three boys have needed FBAs, but these FBAs were not all equal—meaning they didn’t all meet the definition of FBA at the first go.

I was already exhausted and stressed before the FBAs started. The process is stressful, which only adds to it. I’ve lost a lot of time to these combined stressors, and they’ve undoubtedly contributed to me successive illnesses and exhaustion. I’m trying to pull myself back together. Luckily, things seem to be getting back on track for me and for my children, at least to some extent.

Kids Learn to be Cruel

  • Posted on September 24, 2012 at 8:07 AM

Last year was a great year for Willy. It was so great, in fact, he didn’t want to give it up. He didn’t want to give up his fellow students and friends. He didn’t want to give up his teachers and classes. He didn’t want to give up being a seventh grader. And he wasn’t even changing schools!

Then, came this summer. I didn’t want to think of the summer as a portent to things to come, but here were are, creeping to the end of September, and Willy’s “great” has gone, gone, gone.

This isn’t the year of great. This is the year of epilepsy. This isn’t the year of wonderful. This is the year of bullying. And I’m tired of it already.

For many years, I’ve been reassured that Willy is well-liked by his peers. He was happy to go to the school (most of the time) and he was happy at school (most of the time). But all that has changed. Willy is under attack.

That may sound extreme, but I assure it’s not. Willy is being ruthlessly and cruelly teased by people who used to accept him (or pretended to), but have now decided (if it was a decision) that they can build themselves up by tearing him down (if that’s their motivation). In short, he’s being bullied. He’s being bullied about his glasses, about his coordination, and about his speech. I suspect other aspects of himself are being attacked, too, but like most kids, Willy isn’t particularly comfortable talking about it.

That’s a change, too. I get to watch my child “shell up” and lash out. I get to see his moodiness skyrocket at a time when he’s already struggling with difficult emotions surrounding his epilepsy. So far, I don’t think the bullying and the epilepsy are connected, but it’s hard to be sure.

Whatever is going on, it needs to stop. Every child should be safe at school. They should be safe from their teachers and other service providers. They should be safe from their peers. If they’re not, there’s a problem and the school has a responsibility to address it. I’m in contact with the school, and so far they’re taking it seriously. But it hasn’t stopped. On Thursday, I go in concerning another matter. If I haven’t seen drastic improvements, then Mama Bear will be showing her claws and demanding action.

Kids learn to be cruel. They can learn not to be cruel. Cruelty in our schools should NEVER be tolerated. It needs to stop!

Ending and Beginning Merge

  • Posted on June 6, 2012 at 8:00 AM

As the school year comes to its inevitable end, the summer begins.  When the summer ends, a new school year will begin.  This is the cycle of our lives and will continue to be so for many years to come.  The only consolation is the manner in which this change occurs, disorienting enough in itself, that somehow seems to make the transition not easier, but more expected.

Now, with Alex ending his time in elementary school, this pattern is merging even more so as he visits the middle school he will be attending next year.  Surprisingly enough, he found the change so enjoyable he was much happier and smiley afterwards—a promising start that merges with the close of this year and his grade school experience.

Some changes are, however, abrupt.  They happen without warning, or at the very least without understanding.  In these times, such as my mom’s recent move, it is often those things that stay the same that help orient my boys.  For example, when Alex first got to visit my mom’s house, full of boxes and other moving paraphernalia, it was the presence of the television in her new (albeit unlighted) living room that helped to ground him.  The only video he could find was the Netflix DVD I brought for her to watch—a black-and-white old movie, but with nice opening credits Alex could very much appreciate—but it was still something that felt familiar and right to him.

Other times change happens and the only consolation we can offer is some semblance of routine to make it bearable.  But, then again, sometimes these changes shatter routines completely, leaving nothing to cling to but the people around us.

So, as difficult as I find the change between school and summer, summer and school, and back again, I take consolation in the fact that it is, in and of itself, a larger cycle with a now-familiar pattern.  The days of terrible disruption are behind us and the boys handle the switch with remarkable acceptance considering their challenges during those early years of Early Childhood classes.