Monday, November 19, 2012

My love/hate relationship with computers

OK, I readily admit it, I am totally addicted to my computer.  And if I had one, I know I'd feel the same way about an iPod.  But it wasn't always this way.  Things like this sort of creep up on a person, without being consciously aware of what is happening.

A very long time ago, in some other universe, I had no use at all for the latest craze. In fact, when my school was excitedly announcing that computers had been generously awarded to all our classrooms, I wanted to say, "No, thanks!" --- I guess in a way, I did say something to that effect, loudly proclaiming to anyone who would listen that I didn't need more things in my already crowded classroom, I needed people, and preferably people who really cared about the kids who had been entrusted to our care.  I found it curious that various community groups and organizations frequently made donations of books, toys, adaptive equipment, and so on, but no one ever stepped forward to give me what I thought we needed most - qualified, caring, dedicated support staff!

On the home front, my dear husband also tried to convince me that a computer was just what I needed to make my life easier, choosing a rather strange example, at least IMHO (see, I have truly come a long way on this one!).  The selling point he tried out on me was that with a home computer I could catalog all my favorite recipes and then just print each one out as needed.  Yikes! At that time, I was teaching full-time and somehow managing to throw together meals for a family that included some six or seven kids (depending on the number of foster kids living with us at any given time) and often an extra friend or neighbor who happened to be there when we were eating.  While I had always loved collecting recipes, I no longer had time to look at or use any of them - I cooked by instinct and stuck with family favorites that I knew wouldn't go to waste.  Type recipes on the computer, then look them up, print them out and follow them?  Ain't gonna happen!

I can remember being told, at a different school several years later, that we'd no longer be receiving a daily attendance bulletin, since all information we needed would be sent via email, which we were encouraged to check at least once or twice per day.  I sneered at that one, nastily claiming that others must have a much easier schedule than mine, which of course didn't allow for such obligations in addition to everything else I was expected to do in a day.  I never did adjust to the loss of paper announcements, and missed much of what was going on in the building during those early months of the exciting "new" plan!

The first computer to enter my life was an old Apple model (2G, maybe??) and it surely would have become a dust collector in the corner if not for my friend "A" - a bright, overly active boy with autism who gravitated to this modern new piece of technology as if it were placed there just for him.  In no time at all, he figured out how to turn it on, insert discs, play every game we had available to us, everything except how to get things unstuck when he pushed keys a little too fast and things froze up.  As might be expected, I had no clue what to do in these situations, but I had to learn fast - "A" had no patience at all for computer "down" time!  So, I learned just as fast as my reluctant, aging brain would allow, and "A" also had some learning to do - how to share the things he loved, because a growing number of his classmates also found the computer fascinating and enjoyable.  All of them were much more cooperative about doing the work I asked of them, if computer time was the reward.  And amazingly, with kids involved in educational games on the computer, the lack of qualified support staff in my classroom was no longer quite so serious. 

It probably was the computer that set off that light bulb in my head - to match what was already implanted in my heart - that these kids who had been placed in my classroom because of very low IQ scores (less than 50 in some cases!) and who had been given labels such as "cognitively disabled-severe," or CDS, were actually very intelligent, demonstrating on a regular basis that they were a whole lot smarter than their teacher when it came to modern technology.

And so it began.  We got that home computer, also an early Apple model, and during the time when I was out of work, collecting unemployment, I started on a new journey, at my keyboard every day, putting my thoughts into words, writing the book that was finally published in 1999.   I never did input any recipes, and I no longer do much of anything in the way of cooking.

But now I cannot imagine life without technology.  I check email regularly throughout the day - on my desktop, laptop, or smart phone (it is indeed a whole lot smarter than its owner, but I am learning!), I keep up with news, family and friends on Facebook and Twitter, I waste hours on a couple favorite games; I am an addict and I know it!  When Mercury goes retrograde and accounts get hacked or passwords aren't working, I quickly switch to panic mode, accessing helplines or calling tech support in some foreign land.  Whatever it takes, I will do - I must get reconnected, and soon!  And just like "A" all those years ago, I have had to learn to share, because my husband has found a few things HE likes doing on the computer.  Oh, and by the way he's the one doing the cooking these days.  How lucky I am!

It's almost that time of year; maybe Santa will bring me an iPod.  What are the chances???

Friday, August 17, 2012

Asking Questions

A favorite high school teacher of mine had more of an impact on my life than I realized at the time - and I am guessing the same would be true from her perspective.  It was a Catholic school and she was a young nun (though we never really knew their ages, of course) teaching Honors English.  I loved the reading, the writing, and all the wonderful discussions we had.  Most of all, I loved the lesson she taught that has stayed with me for my whole life:  Never be afraid to ask questions; in fact, not asking is the more dangerous route to take.

I've thought of this lesson so often, and it has gotten me through what could have been difficult times in my life.  I have asked questions most recently about what I was taught in school about history and religion, and I have asked many, many questions about what I was taught in my college classes about my chosen career of special education.  All worthy topics for future blogging.  Today I am thinking about kids and questions.

From the time they can put two words together, kids ask questions.  In fact, long before that they catch on to the game of pointing to something so that we can give them a name for it.  Somewhere around age three, those never-ending "why" questions start - and go on and on and on till their rapidly growing brains are satisfied.

It doesn't stop when they leave toddlerhood.  My older grandkids are constantly asking me why I do things (who knows?!?) or what a word means when I use a term or expression that isn't familiar to them.  Asking questions is part of who they are and a critical part of how they learn.

For kids who are nonverbal, or have limited ability to speak, asking questions is often NOT part of what they do.  Their brains are growing also, at least as fast as those who can talk, but they have to find other ways to learn.  Based on what I have learned from so many of them, I can safely say most are very good listeners. We might think they are paying no attention at all much of the time, but we would be so very wrong.

Many of these young kids are drawn to visuals - pictures, TV, computer screens, iPads, books, the printed word in any form - and may even have what we think of as photographic memories.  They take all this in - everything they hear, everything they see - and it's stored inside, maybe forever.  (And maybe some day we'll better understand just what is going on in these incredible brains!)

But a critical piece of the typical learning process is missing.  These kids have no way to ask us questions to clarify the vast amount of input their brains are receiving.  We know their neurological wiring is different in many ways, and for most of us that is about as far as our understanding goes.  We accept that and try to help them find ways to process information and deal with the world around them in the most successful way possible.

What if we could help them ask questions?  Obviously this would help with learning basic academics.  Amazingly, many of the kids I know who are on the autism spectrum have relatively little trouble learning to read and spell or do basic math.  When I have asked them how they learn, the most common answer has been, "I just knew it."  So, at least for these kids, they have already found a way around our more typical methods of teaching/learning.

But I think about the many kids I have known who have problems with "behavior."  (I just have to put that in quotes because one of the many lessons I have learned over the years is that it's really not fair to lump everything they do in this category, mostly because it has such a negative connotation.  If we make the effort to understand why they do the things they do, it might make a whole lot more sense and not be so objectionable or inappropriate after all).

One of my all-time favorite - and most challenging - students was a boy who was quite verbal.  He actually DID ask questions.  In fact, he asked questions all day long - about every sound he heard (most of which I had not heard), about the lighting in the hall, about the schedule for the day, about the cars in the parking lot (he knew which ones belonged to every staff member), about the lunch menu . . . .   But he wasn't able to ask the hard questions that were simmering inside.  Once when he went through a long spell of rather troubling behavior,  we were able to use Facilitated Communication to get at what was bothering him.  In a very emotional visit to his home, I facilitated (in more ways than one) a discussion between him and his mother.  He shared with her that he knew his parents had been arguing about him (she thought they were doing it out of his hearing range) and he was afraid they were going to get divorced and send him to a foster home.

Another of my more talkative students --- whose questions usually related to things in your home:  What color is your refrigerator?  How many laundry baskets do you have?  ----  started getting sick every day at school.  It was usually either a headache or stomachache that he reported, never anything that could be verified  like a fever or rash.  After a few too many false alarms where we sent him home only to learn that he was  fine once he got there, I made a greater effort to use the letter board and FC to get at just what was going on.  This very sensitive young man, only about seven years old, was worried about his mother, who was dealing with depression at the time, and he felt he needed to be at home to keep her safe.

How much are these kids, and adults, dealing with that we know nothing about?  How often are we misled by what they actually say - or their demeanor or body language if unable to speak?

How much better their lives would be - and ours too - if we could find, and then regularly use, an effective means of communication so they can ask the questions that are swirling around inside.

Tuesday, June 26, 2012

Grandma Char Goes to Summer School

So, how does a retired teacher spend her summer?  Well, maybe some time in summer school will feel just about right!

I had a wonderful opportunity last week to attend the Youth Leadership Forum held on a nearby college campus and designed to help teenagers with various disabilities learn about self-advocacy and leadership.  My role was to support my young friend Nate (not his real name - we'll wait until he's ready to share his whole story publicly) who does not speak, but does type to communicate and does have a lot to say!

Nate and I had started typing together several years ago, but once he entered high school - and was having a successful experience there - our time together was very limited.  So we spent a couple hours the week before "summer camp" getting reacquainted and brushing up on our typing rhythms.  All went well and he seemed eager for the experience.  I couldn't answer all the questions he asked, because I had never attended this forum and really didn't know much about what to expect.  I warned him that even though he really wanted to know, I was reluctant to give answers because I could be wrong and that might cause some disappointment.  I did tell him I was quite sure there would be frequent breaks and he would be allowed to take any additional breaks he might need.  I thought it was safe to say there would be a variety of fun activities planned for the week.  And then we tackled his most pressing concern:  How would he fit in?  He seemed worried that his inability to speak would be a problem, and he might not be a good match for the group.  I reassured him that if he would be able to participate by typing I was very sure he would be raising the awareness level of everyone involved - which just so happens to be a major part of his personal life dream.

As it turned out, I was wrong about all those "fun" activities - they probably happened after my shift ended (usually around 3 or 4 p.m., when Nate's dad took over for the remainder of each day/night).  We were essentially in a large group (about 20 participants and almost as many mentors/counselors -all of them former participants in the program) for the entire day, seated around large tables, listening to various presentations on topics such as self-advocacy, accommodations in college, living on your own, federal/state laws regarding disability, etc.  Yes, there were breaks, but not as many as I had expected and usually quite short.  There was lots to learn, and work to be done!

But I was oh-so-wonderfully-right about Nate's impact on the group.  He amazed me by his ability to remain with the group the entire time, taking only the same breaks as everyone else, and then eagerly returning to hear more.   Whenever I checked in with him by typing on his iPad to ask how he was doing, he invariably typed back that all was well and he was happy to be there.  He amazed everyone else by his typed comments and questions.  Every time when Nate finished his typing and I raised my hand to indicate he had something to contribute to the discussion, we had the complete attention of everyone in the room.  Several of the more experienced mentors made a point of sharing with us just how impressed they were with what he had to say and what a hard worker he had been all week long.

For the most part, Nate needed prompting when a speaker finished and the group applauded their comments.  He'd manage a single clap or so and that was it, but his typed comments always indicated he had been listening and really did appreciate all that was being presented.  There was one instance, however, when he spontaneously clapped (several claps this time!) and even vocalized quite loudly - all on his own - and that was when a speaker asked the group if they found it offensive when others use the dreaded "R" word ("retarded" or "retard").  This entire group of amazing young people with all sorts of labels and challenges were in loud and clear agreement that this is the very worst thing they have to deal with.

I learned a lot last week - mostly a huge new respect for the young people who participated.  And I know every one of them - Nate included - grew in their own knowledge and self-confidence.  They will find ways to change the world around them, each in their own way.   We are a better world because of them.

Monday, April 30, 2012

Autism Positivity

This is going to be my shortest blog post ever - I promise! And my hope is that because it will take so little time to read, maybe you will find the time (and inclination) to check out a couple very exciting web sites. I just read that it's Autism Positivity Day - which automatically makes it my very favorite day of the whole Autism Awareness/Acceptance month! I am full of positivity today and I hope you are as well. I am going way out on a limb here, ready to share with you my brand new answer to the question people invariably ask when they hear I am involved with autism.

Q: "So, why are so many more people being diagnosed with autism?" 
A: "Maybe it's because we aren't really listening yet!" 

Leaving aside the common discussion about whether there is really an increase in the number of folks on the autism spectrum, or perhaps we are just getting better at recognizing the condition, the truth is that there really are lots more people who carry the autism label these days.

And, what if . . . . ?

What if they all have something to teach us and we haven't been paying attention?  

That's it - for now at least.  From here, I invite you to check out the following:

Paula Kluth's ideas on inclusion and doing it right.

Temple Grandin's positive take on autism

Wretches and Jabberers - the movie

Some pretty amazing writings from friends who type to communicate

Words of wisdom from my good friend Aaron

Suzy Miller's very positive take on autism

Seeing it as AWETIZM!

Do we have YOUR attention?    I'd love to hear from you.

Saturday, March 24, 2012

Deciding What to Teach - Part Two

Let's turn the focus here on those who fall somewhere on the autism spectrum, either with a medical or educational diagnosis, or the more loosely defined characteristics that are autistic-like in nature.

I have often mentioned the importance of communication. I simply cannot imagine a more important area of emphasis for teaching/learning. Even for kids who are able to speak, maybe even write or type on their own, it's critical that they learn to use these tools to express themselves in a meaningful way. For those who lack the ability to speak, write, type, or even point to make choices the need becomes even more essential.

For me personally, and for so many of the young people I know, the use of supported typing, or Facilitated Communication, has been by far the most exciting and successful method of helping someone with limited communication ability. But I am open to anything - gestures, sign language, the wide array of alternate/augmentative devices now available, pictures, pointing, nodding ---- whatever works. What matters most is that we recognize and encourage any and all attempts on the part of that child (or adult) to let us know what they are thinking. And then we must respect what they are telling us - not dismiss it as inconsequential, or perhaps not actually coming from them.

I have also briefly mentioned the importance of learning to use free time in a way that is meaningful. Some kids actually need help in learning to play; so we teach play skills. Some need to learn what to do during recess, or how to take a break on the job. Many would benefit if we the teachers would encourage them - the learners - to make use of their various talents and interests in ways that improve the quality of their lives and perhaps even contribute to the quality of the lives of others. Far too often, we have determined that a particular interest was an "obsession" to be phased out rather than developed. How many artists, poets, musicians, architects, designers, or other creative geniuses have we stifled in this way?

In addition, a child who can find acceptable ways to entertain themselves makes for a happier family. A child who can remain seated and quiet while coloring, scribbling, or paging through a magazine, is more welcome in a regular class setting. An adult who has hobbies and interests is a much happier person, leading a more satisfying life.

Teaching a person to use computers and other technology is a life skill that will serve them well in almost any environment. Put kids in front of the computer as young as possible and help them learn to use a mouse, click and drag, surf the net, google what interests them, play games, send an email message --- there is no limit here to what can be taught and learned. For those who become "stuck" on certain activities, maybe childish ones we'd like to see them outgrow, gently move them forward and introduce new and different options. (Apology here to those students who tried so hard to convince me of the value of computers in those early years. Sorry, I was a slow learner. I am now totally on your side!)

Putting all of this together, what I really see as most valuable to all concerned is to make use of whatever works to help an individual let us know what they are thinking, what they need, and what we can do to make their environment more user-friendly for them. This includes helping them learn to recognize - and then express - what they are thinking and feeling; helping them make meaningful choices in every possible situation (what they want to eat, what they want to do, what they want to learn about, etc.); helping them know when their sensory systems are approaching overload - or shutdown - and what can be done to make things better; helping them to request a break before a problem develops, and on and on. They need our help and support every step of the way in this process. People with autism are generally not in touch with what is going on within, and people who have gotten used to having others make choices for them have trouble even knowing what they themselves really like or dislike.

In a recent typing session with my friend Roy, I asked for his input on this topic. His advice to all of us follows, as typed:

"Teach the other kids to accept the ones with autism. Teach the other teachers how to be more understanding. Teach everyone to be more joyful. Joy is really how we feel when people like us. Teach them to see us as the ones who try very hard to do what is right."

I can't say it any better than that. I can't imagine anything more important.

Monday, February 27, 2012

Deciding What to Teach - Part One

In my classroom experience with kids who had those awful labels (CDS, moderate/severe/profound MR, multiply handicapped, or whatever) there were always difficult choices to be made about how to spend our days. It goes without saying that these kids had many deficits - by definition that is why they were placed in that particular classroom. Most were served by a variety of other professionals within the school setting, and often another whole set of professionals outside that setting. Services such as physical therapy (PT), occupational therapy (OT), speech and language therapy (SLT) were common in school, and various medical or behavioral specialists would be working with the family when school was not in session. All such services were much needed and much appreciated. But all took up valuable time and energy. Everything these kids did was hard work for them, and of course keeping them healthy, strong and alert was a prime concern for all of us. We wanted to help in every way we could, and we wanted to make the best possible use of the time we had available.

Thank goodness for the IEP process. Sitting down with the parents - and all those wonderful professionals who worked with us - we could review progress at least annually and hash out our priorities for the coming year. I always encouraged the parents to be open and honest about what they wanted most from the school, and to give us any suggestions they might have about what we could/should be attempting to teach. This was before the age of standardized testing, and as long as the parents agreed with me that there was no need for formal testing or assigning grades, we could move forward in agreement with a highly individualized plan in place.

Without a doubt, the primary decision was how much emphasis to place on functional life skills, and how much to place on academic learning. Thinking back to one of my earliest classrooms, we had a variety of adaptive equipment so that kids with physical disabilities could be comfortably positioned in a variety of ways (with therapeutic value of one sort or another) throughout the school day. Rotating each one through the various equipment (not unlike a visit to Curves these days!) along with frequent bathroom visits and time for feeding and rest, there really wasn't a lot of time for other activities. We also had open access to a classroom that had been converted into a mock apartment, with laundry facilities, kitchen appliances, a bed we could practice making, even a sofa with a TV to watch.

Have I mentioned that I was part of a very hard-working committee that spent many long hours developing what we thought was a state-of-the-art curriculum for teaching life skills? We took this very seriously! In addition to skills that might help around the home, we taught community-related skills, social skills, pre-vocational skills and the like.

It wasn't "bad," but in retrospect I am quite sure we were not giving the kids quite enough credit. For example, we commonly worked on such tasks as sorting silverware or folding towels. With so many students having serious motor impairments, this could be quite a challenge. If we were hoping that some day they might live on their own (not likely for most) or maybe work in a restaurant or hotel where these skills might be useful, was the idea that ten or more years of "practice" might make them able to do this satisfactorily? Is it not possible that these skills might not even be needed in the next decade when they would be ready to go out into the world? What about the possibility that we were insulting their intelligence and/or missing valuable time when they could be learning something more important?

The parents I worked with covered a wide spectrum in their expectations. Most were very happy that the school was there to work with their child and gave us a wide berth in the choices we made, trusting our training and experience, our "expertise!" (SCARY!) Some were very specific in what they wanted us to work on in the time we spent with their child, but even they were usually realistic in their expectations and appreciative of our efforts.

And yet, by the time these students left the school system, I think all of us - teachers, therapists, and parents - would agree we hadn't really taught them much, and certainly not enough to be really ready to tackle the world with all its complexities.

When it came to those students on the autism spectrum, things were even more complex and confusing. I worked mostly with those who struggled with communication, so that was always a top priority for me. In the early days, however, my students would often be denied access to the various therapies because they (1) didn't talk (most speech/language therapists were used to working with articulation at the time) or (2) didn't cooperate. They didn't manifest the same type of motor problems as those with physical impairments, so physical therapy was seldom even considered. Always there was a strong emphasis on behavior - lots of time was spent analyzing various behavior patterns that were deemed unacceptable and in need of modification. Once we settled on a specific target behavior the task shifted to finding ways to encourage the child to change, using a combination of rewards and consequences (and yes, in those days, sometimes even punishment). Trouble was, the smartest among them could outsmart the professionals at every turn and a lot of time was spent trying to stay ahead of the game.

What I would change for sure in every single situation - and did, once we started learning more about the true cognitive level of so many of our students - is the level of interaction and instruction. Rather than a room decorated with characters from Sesame Street or Disney movies (even though so many of the kids really did love these characters!) we switched to world maps, pictures of the Presidents, and covers from current news magazines. We had always read to the students regularly, but switched to age-appropriate fiction and non-fiction spanning a wide array of topics that might be both interesting and educational.

For those with autism, it began to seem more important - and respectful - to help the kids learn ways to recognize when they might need a break and how to best do that in the school setting. Learning to occupy themselves during free time, playing alone or with others, expanding their interests -- all seem valuable areas for teaching/learning. As we learned more about the difficulties these kids had dealing with sensory systems that were out of whack most of the time, we realized that helping them find ways to self-regulate was a much more critical life skill than any of the behavior management techniques we had been using.

In general, we were operating from a deficit model. We identified areas where a particular student was unable to perform some task that sooner or later would be needed to get by in life. But the reality is that many of these individuals would never be able to do many of the things we considered essential; they would always need some level of support. Sadly, our focus was so intense that we missed the opportunity to identify and encourage interests and celebrate abilities.

By the time I retired, I had come a long way in my understanding - but not nearly far enough. I won't have another chance to do it differently, but maybe I can help other teachers (or parents) find a way to make better choices.