Archive | Autism/Asperger’s RSS feed for this section

A Few Words About Bullying

6 Oct

no_bullying_category

It has been over a year since my last post, and I thought I would take a shot at a return to writing by tackling the subject of bullying since October is National Bullying Prevention Month.  At least a quarter of all the students in the school where I work are there because of bullying, including one in my own household.  I remember seeing him as he was writing on the whiteboard when one of his teachers asked the students why they had chosen this school and he wrote “NO BULLIES!”  I was a bit surprised.  While it was a persistent problem at his previous school, I had thought that they had taken care of the situation.  But apparently it was still foremost in his mind.  My oldest is not a perfect student, and there were times when his own behavior could be construed as bullying.  Although he would never actually resort to real violence, he would resort to a threatening tone often enough.

Bullying has been around since the first time kids ever got together and decided to ostracize one of their peers.  Kids seem to naturally gravitate toward that Lord-Of-The-Flies behavior and sometimes adults do too.  And anyone who has ever posted a YouTube video or even written a blog has experienced the cyber version of this, thanks to the anonymity afforded by the medium.  However, the internet’s community-building has also  created safer places for kids who might be different so they can bridge the gaps created by physical geography to connect and share unique interests with each other.  There’s never been a better time in history to be a nerd.  The internet was created by nerds for other nerds, and the rest of the population eventually jumped on the bandwagon and made it hip and cool and an environment almost as treacherous as the real playground.

I was bullied pretty relentlessly while I was in school.  I was not “tough”, I wasn’t a jock and I wasn’t cool, although heaven knows I really tried my best at all of those things.  Being socially awkward and not a member of the cool crowd carried (and probably still carries) a pretty heavy price tag in small-town America.  It gets even heavier when you move from one to another, and you have no established family ties in the area and everyone else seems to be related to each other.  And if you didn’t have the money for the coolest clothes, cars and consumer goods, you were were pretty much out of luck.  The town I spent most of my time growing up in, is actually now one of the most diverse communities in the state of Iowa; a state not known for its diversity.  And I imagine the natives that didn’t eventually flee from the area HATE it!  I believe God has a unique sense of humor and this is proof of it.  A place that was pretty intolerant in the 70’s and 80’s now has it’s economy pinned to its diversity.

However, regardless of how I was treated I still have to ask myself a more important question “Was I ever a bully?”

I certainly was not the guy shaking down others for their lunch money or terrorizing smaller kids on the school bus.  But I’m pretty sure I might have done some things that were unkind to people who were lower on the social ladder than I was, as low as that was.  The desire and pressure to fit in, be cool and be popular would eventually get the better of me.  Or rather, it allowed control by the worst of me.  If I thought that it would have advanced my own social position, yeah, I would have thrown a rock or two at Piggy.  I probably said the wrong things to people that hurt them at some point.  So the line between the bully and the victim is not so clearly drawn, and I think we all have some darker part of us capable of inflicting misery on others.  There’s always some degree of intolerance, no matter how tolerant we think we might be.  Sometimes we lash out at intolerance with more intolerance!

It’s rather ironic that October is devoted toward Bullying Prevention.  As we approach November elections we’re going to witness intense bullying in the form of electoral discourse across all forms of media as each party clubs the other with negative advertising designed to cause lots of repeated discomfort for the other side.  I’m just referencing the treatment given to the topic by the American Psychological Association:

Bullying is a form of aggressive behavior in which someone intentionally and repeatedly causes another person injury or discomfort. Bullying can take the form of physical contact, words or more subtle actions.

The bullied individual typically has trouble defending him or herself and does nothing to “cause” the bullying.

Individuals with autism are especially vulnerable to bullying.  The prevalence of bullying is so high against and among individuals on the autistic spectrum that I would almost make an argument that it is as much of a Aspergers marker as repetitive behaviors.  The articles I linked to give a good treatment of the problem within this community and hypothesize as to the reasons for it.   It’s part of the body of evidence that allows me to stake a modest part of ASD  real estate for myself.

I think the most crucial skill we can teach our kids, especially those who are prone to being bullied, is to recognize when they are being baited and to bypass the temptation to become engaged in a battle that can’t be won.  Most arguments regarding religion and politics fall within that category but almost any area of interest or passion can be used to draw a person into a situation where they feel the need to defend themselves from attack.  Most cyber bullies will use those things to troll and trap a victim into a relentless cycle of abuse and it’s important to know when it’s time to just walk out and not respond at all like Zelda did.

The internet and social media have turned into a double-edged sword for people who have difficulties relating socially.  The buffer of the keyboard often gives people the space for free expression and voice where they might otherwise not have one, but it also provides the sort of cover that can be harnessed by miscreants who like to ambush people and set them off for kicks.  I’m grateful to be part of a school that offers a relatively safe place for students to learn without the threats of physical assault, incessant teasing and the anxieties of not fitting in becoming a distraction to learning.  There are still distractions and cyber bullying can still happen, but in our virtual setting and environment we are able to keep tight controls within our virtual classrooms.  For the most part, the students are friendly and very supportive of each other as they often find that they share a common history of maltreatment from their traditional settings.  This explains why there was such a flurry of agreement and supportive comments in the chatbox fpr a message on the white board.  NO BULLIES!

You need to learn more about autism so you don’t judge me!

27 Dec

I remember my oldest when he couldn’t talk.  He finally started to talk when he was about 3 years old, after a lot of intense therapy done be various SLP’s, including a few working through Georgia State’s “Toddler’s Project.”  It’s only been a few years since they stopped tracking him and his progress, but I’m sure he was one of their success stories, combining AAC with various behavioral techniques.

Now we have a hard time keeping him quiet.  Back in the day, his meltdowns would be seriously long and loud crying jags that might even include him hitting himself.  The a couple of years ago, there was a lot of self-negativity as he felt awful about himself.  Some of it was actually amusing as he took responsibility for the sinking of the Titanic and the Cretaceous period extinction event.  During each stage, we always wondered what was next.  He’s almost 14 and has been going through full-blown puberty and teenage angst.  It can be a frightful thing for even the parents of the most typical children.  For those who have children with autism it is even ore perilous as so many things become magnified with adolescence.  The academic and social expectations go through the roof during middle school.

Just lately I have noticed a new trend with his meltdowns, which happen most often when we as parents put demands on him or reprimand him for doing something he should not be doing.  “OH!  You’re just discriminating against me because I have autism!” or “You hate me because I have autism!” or “You need to learn more about autism so you don’t judge me!”  He’s usually saying this while pulling at his own hair.

It’s kind of an astounding evolution in thinking and language.  But I do have to hand it to him: he is learning how to advocate for himself.  Back when he couldn’t talk, I would have never dreamed we would get to this place.  Even though the tantrums are not pleasant and even though when he gets to this point he doesn’t listen to anything anyone says, it is still movement forward.

We’re fortunate that he knew how to read before he could talk.  He always loved books and reading to him was actually something that was soothing and calming to him.  So when he was in 1st grade or so, we got him a book about someone who had a friend named Sam.  It kinda helped that he had someone close in the family named Sam.  We got it so maybe his own classmates might be able to relate to him better and it wasn’t long before he was reading it himself.  We never really tried to hide autism and what it was from him.  I do know parents that do that, in the name of trying to protect the kids from labeling themselves.  But kids do that anyway, even if they don’t know what exactly the label is.  Different.  Weird.  Dork. Nerd. Outcast. Freak. Geek. Retard.   Whatever you want to call it, kids will label themselves and each other.  I know parents who quit going on the annual autism walks because the kids were starting to ask questions about autism and why they were walking.

The latest book his mother got for him is Ellen Sabin’s Autism Acceptance Book.  He’s had that for a few years but now it seems to be sinking in that he is different.  The fact that he is using the label to kind of try to guilt us as parents seems to indicate that he is beginning to differentiate himself.  This is not a bad thing, even though it seems like he lashes out with it at the worst times.  He’s establishing an identity and autism is part of it.  It is part of who he is, and he isn’t trying to dodge this fact of his life.  In fact, he is kind of embracing it.  He can tell you that talking to yourself can be part of autism.  Being sensitive to sound can be part of autism.  He is getting to a point where he can articulate what is going on with him and is becoming more okay with it.  He’s not there yet.  EVERY teenager struggles with doubt and insecurity and finding a place to belong.  He’s trying to discover his own autonomy and identity and is gradually getting a handle on things.  Gradually.

I think the best way to help a child who has the ability to grasp the idea, is to be honest with them in all things.  And to accept them for being the individuals that they are.  We can all dream of there being some sort of cure, but that dream doesn’t help my son today.  It doesn’t help him with his schoolwork, his desire to fit in or to develop his own dreams for the future.  And by the time there is a cure, would he even want it?  He’s incorporating this into who he is and it looks to me like he is staking his claim on his own little piece of the universe.  It just happens to include autism.  I tried to search for “Autism Power” and all I saw were images, slogans and sights dedicated to “recovery”.  Unlike “Deaf Power” which returns all sorts of sites dedicated to the belief that deafness is only a disability because hearing people make it that way.  There’s a few images referring to Autism as a superpower, but I’m not sure I like that message either.

This (among other reasons)  is why I love the good folks on the Thinking Person’s Guide to Autism blog.  Autistics are beginning to take up their own cause for advocacy and are actually offering a lot of hope for people like my son.  The dialog is less on the horrible-ness of the disease and how hopeless it is, toward a more positive message of acceptance and that things ARE doable.  I see this as one of the major civil rights shifts of our day.  And if the numbers (1 in 88 births) are any indication, then we can expect a lot more voices demanding their right to exist.  Expect to see “Autistic and Proud” on a shirt or button near you.

Thirteen Years Ago…

20 Feb

Saturday, my oldest turned 13 years old.

The pregnancy was almost absolutely normal, and I remember going through the childbirth classes with several other couples, sharing a lot of anticipation.  Finally, the day came.  I came home and my wife let me know that it was time to take that trip to Tallahassee.  I remember giving her a stopwatch and told her to hit the splits button whenever she felt a contraction.  All the way down, I could hear a “beep” every time she hit the button.  The watch was rather high tech, and would keep track of the closest and furthest contractions as well as the average time between them.  It’s the nerd in me that wanted to know such things!

We were doing pretty well, but it was a pretty long night.  When he was born, I remember cutting the umbilical cord and I also remember a swarm of nurses coming into the room.  I had no idea what was going on.  As it turned out he had a pneumothorax which caused one of his lungs to collapse.  He was rushed to the NICU, and I went with him, leaving his mother who was also in some distress of her own, unbeknown to me.

I remember him wiggling around as they attached the wires and tubes and needles.  He spent 4 days in the NICU, before it healed on its own without any medication, surgery or other interventions beyond oxygen. I was in a total daze.  I had no idea of what was happening at the time.  Or that this was just the beginning of a long journey.

In my wife’s words:

“[He] was born on his due date. As he struggled to take his first breath, his left lung collapsed. Within the following day, his lung had healed without requiring a chest tube. He spent a total of 4 days in the NICU. When he was 2 weeks old, we was back in the hospital with aspiration pneumonia. He was diagnosed with moderate reflux. When he was 4 months old, he started having seizures. At 15 months, he lost the ability to speak the words he had acquired. At 20 months, he was diagnosed with autism. I often asked, “God, why me??”

My wife was always a step ahead of me as far as recognizing when there were problems.  But it was my own background in special education that enabled me to recognize that we were seeing something akin to autism.  The when I asked him, the neurologist admitted that it could be some form of developmental delays and gave him the PDD-NOS diagnosis.  Pervasive Developmental Disorder – Not Otherwise Specified.   Back then, they seemed very reluctant to give an autism diagnosis, especially to someone as young as my son was.

Our story follows a similar trajectory of many other families as we experienced the ups and downs of life with autism.  We had the assistance of many good and competent therapists and teachers.  And there might have been a few less-than-good ones along the way.

He has generally been a happy child, but the teen-aged years are starting out very rough for him.  He has been changing into a young man for the past couple of years with his voice changing and then the attendant mood swings that goes along with this transition.  And typical middle school behaviors of his peers have not helped matters as other kids make fun of him, and he is unable to ignore or handle the name-calling and criticism like he could when he was younger.  There was a time when he often could care less what people thought of what he did or said, but today it is far different.  He is very sensitive about what his peers think or say and of course it is the negative things that get amplified.

In a lot of ways, he reminds me of Daxflame, a teenager who became somewhat notorious on youtube for his meltdowns on camera.  But if you watch (and they ARE hard to watch for those of us close to autism and Aspergers) you can see him struggling to control himself, to be understood and to make friends.

As hard as the videos are to watch, the comments are even more hideous. He exhibited a lot of courage putting himself out there like that.

So as difficult as the first 13 years have been, we’re entering some entirely new territory. In some ways this is much like all parents of teenagers, but with an added complication that makes the conformity demanded by teenagers all but impossible for my son. How does one “fit in” when almost everything they say or do makes them stick out?

It’s Out!: The Thinking Person’s Guide to Autism

4 Jan

And it is on my list of things to get for myself, now that the holidays are all done and I am looking to get into some semblance of a routine again.

The Thinking Person’s Guide to Autism is a collaborative effort that has brought together a lot of wonderful writers and experts.  It really is the book that I wish I would have had 11 years ago, when our oldest was first identified.  Over the years I had a chance to read a number of the other writers who were also blogging and writing on the subject and became contributers in this book.  We were all working our way through, trying to discover and put together the pieces that would make our lives better, more manageable and happier for everyone in our families.  This book represents the best of what we each discovered and is a field guide for anyone who is working their way through the novelties and oddities posed by autism.

The editors did a fine job of putting this together.  In particular, I want to give a shout to Liz, who has always been a source of encouragement and support to me and my writing.  Thanks so much for allowing me to be a part of such a great resource!

My New Theme Song?

13 Aug

This is really awesome and amazing, which was an accidentally discovery.  You would think that I would have my own blog bookmarked, but on this newer machine and not having blogged regularly for a couple of years…well it was just easier to search for it whenever I had the need to look at it. And then I made it private thinking it was hindering my job search and ignored it (and the poll results that said it was a good thing) and forgot about it.

So I’m searching for my own blog and then I happened to stumble upon a song and an album with a name that is oddly and mysteriously titled similar to my blog.  What do you think?

It really hits squarely on a major theme that I have tried to address in so many of my posts as a parent and as teacher.  I think it is beautifully done and when visiting the album’s web page discovered just a series of positive and inspirational tracks.  Kudos to the producers and musicians who put this together!

Ummm…you might want to have some tissues handy watching the whole video.

I’m just sayin’.

D.

Teaching Moments and Life Lessons

15 Aug

Every parent or teacher has them; those moments where a lesson chooses its own time and you simply have to capitalize on the opportunity presented to take advantage of it.

Being not employed has presented a lot of those moments for my kids that would not be there otherwise.  We’ve actually had some pretty remarkable conversations about budgeting, money and what is involved in getting a job, keeping a job and the types of job a person can do and the amount of money a person makes at a given job.

My oldest is in the 5th grade, and each passing year brings a bit more anxiety about his future.  He is remarkably intelligent in so many ways, and yet has not learned to tie his own shoes or use the mustard without drowning his hot dog.  It is a mixture of fear and amazement.  I suppose this is true of all parents, but for those of us with someone who is exceptional it is even more so.  We wonder if our kids will be able to live independently without setting fire to their apartment, or if they will be able to hold a job or safely drive a car.

So today, my oldest insisted that I needed to get a job tomorrow in order that we might be able to travel again and put an end to all this talk about not having enough money to do things.  He opened his almanac and was looking up the richest men in the world, and had a host of suggestions for me, including working for Microsoft and Walmart.

This lead to a discussion of getting skills necessary to get a job.  When he suggested working for Ford Motor Company, I explained about how I might need to be trained as a mechanic to be able to afford to take care of him and the rest of the family.  His younger brother chimed in at the prospect of working for various fast food places.  While these are certainly prospects, I explained that they might not be the best prospects and explained how wages were linked to qualifications and skills which were linked to doing well in school.

I can tell that both boys are in deep thought about the job issue and have concerns about it.  Last week, my youngest postulated about what it might be like living under a bridge somewhere!  I explained that because we had been wise with our money when we had plenty, we would be okay for awhile while looking for a job, which led to a discussion about saving money and why we do it and how to do it.

And one reason why we are okay (not great, but okay) at the moment was because of the lessons my own parents taught me about money and debt while growing up on the farm.  We never had a lot, and my parents made it clear that it took a lot of work to make money and not to take it for granted.  I remember when being about the age of my own kids we did not always have the latest toys, clothes or things.  Most people would have regarded us as poor, but I never thought we were.  I knew other people who were more poor and a few who were pretty well off.  Where I grew up, school teachers were regarded as among the well-off!

So as a family we’re learning a few things and hopefully the best lessons will hang around for awhile while we move on.  And hopefully we’ll move on before things get so bad we’re contemplating a move under the bridge!

Check out The Thinking Person’s Guide to Autism!

9 Jul

I was hoping that the next post I was writing would be all about the new job I found and the excitement involved in looking forward to a fresh new start in a fresh new place.

I hasn’t happened….yet.  I have had several good interviews and I walked out of each of them feeling like I had hit it out of the ballpark.  These were positions that screamed my name as far as the skills required and my background, experience and desires.  I was wondering “How am I going to choose between them…they all seem great!”  But then days turn into weeks and no follow-up call comes.  One did send an email stating they had hired someone else, and that is totally fine.  It is possible there are some other highly qualified, experienced people who are also looking might be better suited to some spots.  But Some of these seemed SO tailor-made for me.  I’m scratching my head, but continuing to pursue what pening there are and trying not to get discouraged.

You can only imagine Jane’s anxiety.  And my two boys also know that this summer is different because we are not taking any real long trips or vacations and holding on to the money a little tighter.  They know it is all about Daddy’s job.  At least we still have medical insurance for a couple more months.

But I DO have some good news to share!  Liz Ditz has been a sort of guardian angel of my blog since its earliest days, linking, commenting and promoting articles she thought were good, and driving a lot of readers my way.  She is just a dynamo of reading and writing and promoting the cause of disability advocacy.  Every blogger should be so lucky to have a Liz in their readership!

A few weeks ago, she emailed and asked about an article I had written from my IEP series and wondered if I would be interested in participating in a project of contributing it toward a book she and some other folks are working on.  And so after doing some editing and updating, we finished it and you can read the revised version of my article on IEP goals at the Thinking Persons Guide To Autism which will eventually become a print book!  How cool is that?

I invite you to seriously check the blog out, because it has many awesome articles written be some very accomplished bloggers.  I totally wish I had a resource like this in the earliest days of son’s diagnosis.  It is a common sense and scientific look at autism issues without the weeping, wailing and gnashing of teeth that I see in so much autism literature and articles by parents and professionals in the field while being sensitive to the emotional overhang associated with autism.  There are some great articles there that are worth a look as a professional as well as a parent.  This blog is decidedly parent-centric written by and for parents but is a great resource for teachers and othe professionals too.

Follow

Get every new post delivered to your Inbox.

Join 197 other followers