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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.

Accelerated Reader: Undermining literacy while plundering library budgets

12 Apr

A recent report about the lowering of reading scores is making news in educational circles. 

Sandra Stotsky, holder of the Twenty-First Century Chair in Teacher Quality in the department of education reform at the University of Arkansas, says American high school students do not read challenging books, whether they are assigned by their teachers or chosen for leisure reading.

The report is put out by the same company that sells the Accelerated Reader, more commonly known as AR in a school near you.  Basically, AR is built for data.  Books are rated and organized according to reading level and length and then quizzes are given to students after they read the books and awarded points based on how well they perform on the quizzes.  The quizzes are all computerized thus facilitating the data driven instruction favored by the leaders in educational reform today.

Here is a great article by Gary Stager on the shortcomings of AR and how it drains schools of scarce resources while creating and exacerbating a problem that it is claiming to address.  What I want to add to the conversation is first-hand experience with how AR, and its implementation has had a detrimental effect on reading in our household.

In my youngest son’s 4th grade classroom, he is assigned a sort of individualized reading goal of a certain number of points per month.  Making this goal is a substantial part of his grade.  The goal is fairly well-written, in that it is precise and can be efficiently measured, since AR is a like a dream for people who are data driven. Plus it can be individualized based on ability.  You would think a behaviorist like me would love it.

 

My 4th grader has the dubious honor of being able to read on about the 6-7th grade level.  So the grade level he is restricted to is at the 5-7th grade range.  If he reads anything at too low a level, he doesn’t get enough points.  If he reads to far above, he can’t comprehend enough to pass the AR test.  So AR should be aiming at his sweet spot of about the 6th grade level.  The problem is, is that my quest student has a goal that makes him read a book about every week.  In 4th grade.  On top of the rest of the homework he is being assigned.  So right away, we are digging into his non-homework time at home, as the school day is extended 2-4 hours every afternoon and night. 

But there is another problem with this AR system besides the bone-numbing reduction of reading into data points.  It is also expensive and it creates additional and needless drain on resources while at the same time  it decreases accessibility and options.  The true limitations of AR didn’t really hit us until we decided to buy a Kindle Touch with our own scarce financial resources.

The idea was that eyes strain from staring at a computer screen for long periods for just reading might be alleviated by the more natural experience offered by the Kindle.  And that we could have more access to more books, free books, using the Kindle.  And indeed there are free classic books to be had.  Most of them freely available through the Gutenberg Project.  And they are classic literature, time tested and things that many of us might have read when we were kids and our kids might discover and are completely appropriate for school. 

The first book I downloaded on our brand new kindle was a book called Toby Tyler or Ten Weeks with the Circus.  It has some pretty heavy themes but there is no bad language and there is a less on to be learned.  The book is slightly on the low side for my 10 year-old at about a 4-5th grade level.  But I thought he might enjoy it.  But he will probably never read it because if you search the AR book finder, it is not there.  And neither are several free and classic works of children’s literature.  Basically, we are totally limited to those books that have tests because he has only a limited amount of time and he has high expectations for himself and will push himself to reach certain goals including getting straight A’s.  So AR books, and his grade, have a much higher priority than reading for enjoyment. It is NOT enjoyable to read for him, it is a CHORE.

His less conscientious classmates choose books from the AR list, but compare that list to the Netflix/movie list in order to “finish” a Harry Potter book in about 2 hours.  They basically game the system as much as possible.

Let’s talk a a bit about the less motivated brother who just turned 13.  He likes to read, but his interests are so restricted that they hardly even appear on any AR list at any reading level.  Titanic, trains, and….that is about it at the moment although we are gradually working on expanding the list.  For awhile he was interested in entrepreneurship and read books about the founding of Coca cola and McDonald’s which I think I enjoyed reading more than he did.  But those were each only worth one point despite being on a 7th grade reading level just because they were relatively short.  Getting him through a novel is a LOT of work.  We had to work overtime to get him through the book Where the Red Fern Grows which included having him watch the movie more than once.  And he has developed a fixation toward getting coon dogs now.  This is a fine story, but it was SO hard getting him to read the book.  But we also didn’t want to add the expense of an audio book on top of the book and the movie we bought. 

One thing about the free classic works of literature, is that they are available in audio as well as free electronic book form though Librivox.  So now a person can listen with their Kindle Touch while they read along.  Every book can be made into a read-along-book.  And it is free.  And these are challenging books.  these would be a much better choice for both of my kids because they are presented in multiple formats and widely accessible.  Being in the public domain also opens up all sorts of possibilities for manipulating these stories and putting on plays, doing illustrations and basically having fun without the worry of copyright and cost restrictions.  This would be leveraging technology properly, although it does not lend itself especially well to the data driven approach favored by the education czars of both Bush and Obama administrations.  And I see nothing that convinces me a new president will make any positive changes. 

AR is an expensive program that limits and saddles a school with only certain books that happen to have quizzes in them.  The entire idea of reading as an enjoyable endeavor is abandoned in favor of turning both my kids into data points.  It is not cost effective to limit its use to only those students who might benefit from the point system, so everyone has to use it.

I happened to witness another casualty of the AR system.  It encourages cheating, which turns the poor librarian into a sort of guard who has to make sure that kids are not looking over another’s shoulder and getting answers.  I saw this while substituting in a 4th grade classroom.  The lone librarian (she had no aid as those positions had been long cut) was exasperated with trying to monitor my class, the AR test takers plus check out books and organize the huge stacks behind her.  I’m sure when she entered the field she many idea of how she might promote literacy and a love of reading to children everywhere.  I have yet to meet one that had anything good to say about AR.

 

 

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!

Book Review: Autism & Alleluias

8 Apr

A while back I got an email inviting me to review a book, and the publisher even offered to send me a free copy in exchange for doing a review.  This blog does often result in some interesting offers (no job offers tho, haha) but I do not do many of them.  I like blogging because I can do it in my own time, in my own way.  I also do not read a whole lot of books on autism much anymore.  I’ve been around the business enough that I know they generally follow a similar formula.  Basically they tend to follow the story of a couple who give birth to a seemingly normal child and then within 2-3 years discover their child has some sort of developmental delays.  They are thrown into fits of grief, rage and searching.  Then the reader is led through a myriad of treatments and therapies, hoping against hope trying to find a cure.  And each book author has found some sort of cure or recovery story.  Or so it seems.

Autism & Alleluias is not that sort of book at all.  In fact, it is more of a Bible inspirational devotional than a real story.  Kathleen Buldoc may have covered the autobiographical formula in an earlier work, but this one is put together differently.  In 39 little chapters, she conveys a different lesson in each that her son has taught her even in the midst of being nearly overwhelmed by the trials and tribulations of raising a son on the autism spectrum.

Each chapter begins with a Bible scripture, then Buldoc shares a story of something that happened with her son.  It might be a call from the school, trying to sit in church, a vacation gone awry or any number of challenges that all of us parents are familiar with.  She will share her frustration and emotions before also sharing the lesson that each event teaches.  At the very end of each chapter, there is a prayer thanking God for the lessons learned.  It is basically about how she finds God expressed in raising a son with autism.

I found the stories encouraging as this was a good demonstration of the pluck and courage of one mother in spite of some very real and very large challenges.  Her son had many behavioral issues including some that seemed quite aggressive such as hair pulling and grabbing glasses.  It shed a light on how gratitude could be expressed even in some dark situations.

I did buy the book and once my wife reads it, I have no doubt is will be passed along to someone else.  In  fact, when it came in the mail I had to admonish Jane not to run off with it as she was REALLY interested it.  So it is safe to say that just about any christian mother of a child with autism would identify with, and like this book.  It is one of the few that lays out some comfort without a lot of guilt.  Many books that purport a cure,will leave a reader feeling very guilty for not trying it out or doing it, all in the name of finding a cure.  Kathleen does not do that in this book, but she does guide the way into finding more acceptance with her son and finding acceptance with God.

So all-in-all, I would say it was a worthwhile purchase, even though it is well outside of the genre of books that I normally read and buy.  I would be more apt to buy this for someone else rather than myself.  So I think this might make a good gift book for christian parents of children with disabilities, especially autism.

Update Post Holiday Break Edition

6 Jan

We went back to school, the kids and I, for the first time in 2010 today (Jan 5th). Originally, yesterday was supposed to be a teacher workday, but the school board moved that workday to the end to try to make room for more furlough days should the state legislature decide that there is too much of a budget shortfall. I was totally fine with that move but I know a lot of teachers really needed and wanted that time to prepare their classes for the new semester. In my program, in matters less since we continue to do what we started last semester despite new course titles and course numbers. I’m the only one in the school with more separate classes than students!

My break was uneventful and calm…just the way I like it! I did my best not to get too entangled in the holiday madness even though some of it is unavoidable. I am dealing with a slight case of Second Life (SL) withdrawal, though. Of all the things I’m plugged into (blogging,youtube, Classroom 2.0, Teachertube, Facebook and the FB game Farmtown) SL has me the most hooked. It combines a lot of nerdiness, with heavy role play with social interaction and the only limit is imagination which is nearly limitless because other people are constantly creating things from their imaginations. I was in-world a lot over the break, up late at night. Back to work means getting to bed earlier which means less SL time.

My students who returned today all seemed glad to be here, albeit some were tired by the end of the day. I know I had a period right after lunch when I was sleepy! but I thinki the restoration of a consistent routine is good for me and most definitely good for my students and my own kids at home. We just do better with a regular schedule rather than too much unstructured time. But to be honest, my oldest did really well with all of the unstructured time. He loves the computer and TV, of course. but also likes doing imaginative play with his brother using Legos or stuffed animals. For the past 9 months his obsession has been the Titanic. When he gets on the web, he is reading all about the titanic. He watch YouTube about the Titanic. He wants to know everything there is to know about the Titanic. His interest does branch out a bit to other ships in the White Star line and other ships in general that sank and finally to just ships. So what to do with someone who has a seemingly narrow obsession?

I bought a book last fall by Paula Kluth called Just Give Him the Whale: 20 Ways to use Fascinations, Areas of Expertise and Strengths to Support Students with Autism. I have to admit that this is not a game changer, but then again I have not found many books about autism that really grab me anymore. I do like that these are simple and practical suggestions of how to incorporate a single fascination and use it to open new doors and expand personal interests in the process. So for those who have kids higher on the spectrum, it might be a handy book to have around.  It is a place I will go when puzzling about what to do with narrow interests areas of expertise of my oldest son.

And this blog is about to turn 4 years old! Whoo hoo! There have been some threats to it since I started and the present climate is every bit as threatening or more so than it was 4 years ago. School officials at every level (building, county, state, national) are simply not comfortable with some unauthorized teacher writing news and views without some explicit control or without their own front-person calling the shots and spinning things to make everyone look good. While I’m not out to make anyone look particularly bad, neither does it have to look good all the time. I think people will respect the honesty involved in saying “Hey, we screwed up! We’re willing to admit it, fix it and move on!”

2010 is going to be a wild and woolly year, I have no doubt about it!

I wonder if I’m the only one who would like a snow day later this week?

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