Monday, November 30, 2009

News Story - Man in Coma

Yet another exciting story in the news. I will try to provide a direct link, but in case that isn't working, try Google: Rom Houben, Belgium, man in coma starts to communicate.
href="http://www.cnn.com/2009/HEALTH/11/24/coma.man.belgium.index.html"

And almost as soon as the story broke, the skeptics recognized that the communication method the man is using looks a lot like Facilitated Communication. So the nay-saying begins. My heartfelt compassion to the man and those who love him. What an insult it is to have your communication questioned rather than your awareness and intellect celebrated!

But that is of course what most of my friends who type to communicate deal with all the time. There's a major difference, however. Mr. Houben had been leading a normal life as far as his ability to communicate and live on his own. The people I work with had difficulties either from birth or shortly afterward. They never had the chance to show people around them that they were really thinking, caring beings. And again there is an exception to this scenario: Many young kids with autism develop normally, often reaching milestones ahead of the charts in the pediatrician's office, with an extensive spoken vocabulary documented by their parent. Suddenly, or gradually, they then lost the ability to speak, play, or interact in a "normal" way.

Mr. Houben's mother never stopped believing that her son was "in there" --- and this went on for 23 years! She and others are now able to communicate with him by supporting his hand and providing access to a keyboard. He talks about being lonely and frustrated, saddened by his father's death. Now, he has typed, "I simply want to enjoy life. I notice a big difference now that I'm back in contact with the world."

The use of brain scans was an important key in this particular case. Once the doctors saw positive evidence of much more brain activity than would be expected when a person is in a vegetative state (VS). In fact, his level of brain functioning is described in the CNN article as "fully functional!"

I am greatly disturbed to realize there is still such a serious backlash to news like this, still such a strong belief that a person who is unable to speak (or move!) must also be unable to think. Can we instead rejoice with Mr. Houben, his family and medical team, and use this opportunity to study others who are "locked in" and unable to communicate their inner thoughts?

Alternative Treatments for Autism

The Chicago Tribune recently ran a lengthy article looking at some of the more controversial treatments being used for autism. If the link doesn't work, a search of the archives should help you find the article. Try "autism treatment" or something similar.
http://www.chicagotribune.com/health/chi-autism-treatments-nov22,0,1396079.story

When I first saw the headline, I immediately scanned the article to see if my personal favorite - Facilitated Communication - was included. Because the story focused on questionable medical interventions, we were spared this time. But I know the feeling all too well. Being part of a major controversy keeps one on edge much of the time.

So, breathing a sigh of relief, I read on. And, as I have done so often in the past, I tried putting myself in the shoes of the parents. What if I had a child with autism? Where would I turn? What might I consider in the way of treatment or intervention? How does one begin to make such decisions, especially when the medical field seems to know so little about the condition?

I have seen many families whose lives are completely disrupted when they receive the autism diagnosis. Understandably so - it is NOT an easy situation to deal with. I know of NO family with autism living what might even be loosely considered a "typical" life. Everything changes; and at least at the beginning, it seems as though everything revolves around the child with autism.

Most of the parents are quite well-educated; many have higher than average family income. All of us want to do whatever we can to help our children. If a child has a diagnosed medical condition, we want to get him/her the best possible medical attention. But autism is so complex, even mysterious, some sort of mixture of medical and psychiatric disorder, very poorly understood. Where does one turn?

I wouldn't dream of passing judgment on parents who search tirelessly for answers. I have the highest regard for family physicians who take a sincere interest in the child and are willing to help the family in their search. But I do get scared by what I see all too often as the first suggestion for treatment: psychiatric drugs. Surely there must be something better than putting a young child on medications that are designed for adults with schizophrenia or other serious psychiatric conditions.

We talk about the autism "spectrum," suggesting there is a wide variation among those who are given the diagnosis. Knowing as little as we do about the causes of autism, it seems to me that there will be a wide array of interventions or treatments that might be helpful.

So, what would I do? Lots and lots of research. Find a support group. Establish a trusted respite care provider. Take care of self and family. Maybe try some basic dietary changes (the gluten-free, casein-free diet has helped many). Look for early intervention programs that stress development of language, play and social skills. Find a medical doctor (or larger research center) to help with more specific evaluation of underlying medical conditions. And above all, presume competence. Love that child and assume they are capable of learning, thinking, feeling; read to them, talk to them, take them places, expose them to the world - even if they seem to be paying no attention at all, even if they seem to prefer to be left alone in their own world.

What would I avoid? Spending tons of money. Anything that seems just a little too invasive or experimental. Anything that causes major disruptions in the family structure or routine. Trying to find a "cure." Psychiatric medications. (These might be needed later on - I don't like the idea of using them before other interventions have been tried).

Many of the adults with autism who have written books or are able to give presentations at conferences talk about the confusion they felt when they were younger. Parents who thought they were showing their love and concern by running from doctor to doctor seeking answers inadvertently sent a message to the child that there was something terribly "wrong" with them. The child often knows they are causing their family trouble, and easily picks up on the idea that they are defective. They want to be loved and accepted for who they are - don't we all? So, the search for answers and interventions must be delicately balanced. The message to be conveyed is that we love you just as you are, and we will never, ever give up on our efforts to make your life as comfortable and "livable" as possible. We are NOT trying to fix you, but we WILL try to make your environment as accommodating as we possibly can. We WILL try to educate ourselves and everyone else in your life so that we can all live more comfortably with you and your autism.

It is not easy. The good news is that there are more and more success stories out there. There is hope for a better future.

Sunday, November 29, 2009

The choices we make

I find myself full of things I want to write about, so full that I can't quite decide where to start or what to say. I could, as I've often done in the past, choose to do nothing. That would be the procrastinator in me. Can't decide what to write about? Well, maybe it's time to dig out the mending or ironing projects, or maybe it would be a good time to clean a drawer or closet. That's often the only way any of those undesirable projects ever get done! But before I tackle that, I should probably relax and take a nap!

This time I am going to do it differently. I am going to make a deliberate choice to write about SOMEthing and get the process started. Bear with me as I ramble . . .

The world of the computer and Internet has added immeasurably to our lives. Besides giving procrastinators like me so many more diversions, it has opened my world - and I am sure yours as well - to a vast new appreciation of the world we live in. Most of what we see, hear or read calls attention to the differences among us. We live in climates that are hot/cold/mild, rainy/dry, stormy or calm. We live in a wide range of economic and political circumstances, speak different languages, attend different places of worship, or choose not to worship at all.

As I have matured, I have felt an overwhelming desire to seek those things that bring us together, and to minimize anything that causes divisions. It's not always an easy thing to do, but we do have some control, and we do make choices on a regular basis. We CAN choose to work toward common goals.

Here in the U.S. we are deep into the holiday season. Having just celebrated Thanksgiving, we quickly move forward into the busiest shopping season of the year. We aren't sure any more what to call it - are we shopping and decorating for "Christmas" or some other major religious holiday, or do we do it just because it is fun? My choice at this particular stage in my personal life is to keep the commercialism to a minimum, let everyone celebrate as they choose, and focus on the blessings of family and friends.

Our Thanksgiving holiday was special in many ways. We didn't really know until the day before just where we were going to be gathering, or even who was doing the cooking, but we knew we'd be together - at least those who were close enough and healthy enough to make the trip. Sharing the holiday with the deer hunting season has always been a factor for many families we know. This year a very special high school championship football game and the outbreak of the H1N1 virus was added to the mix for our family.

Many years ago, we made a choice to celebrate important holidays and family birthdays whenever it worked out for the majority of us to gather. Seldom does this happen right on the day - but no one really cares. What is important is the time spent together.

Nor does it matter what we eat, or whether we use the company plates or flatware. In fact, my personal choice leans toward keeping all of this as simple as possible so that no one is feeling burdened with the work of preparing meals or cleaning up afterward.

As for the holidays that lie ahead, I have some choices to make very soon. The surveys are already out showing just how much the average American is planning to spend on gifts, and the stores are begging for my attendance, trying to entice me with special deals that are too good to miss. Several years ago, I found a way to spend in a way that seemed a little more appealing. I no longer buy gifts for our grown children, nor for the older grandchildren. Instead the money goes toward college funds and helping families who have so much less than we do through various charitable programs around the world.

I have always sent a newsy family letter at this time of year, and love hearing from others who do the same. Last year I tried to cut the cost of all that paper and postage by changing to an email message. This year I am struggling because all of our "good" news seems somehow inappropriate when so many we know are dealing with major issues in their lives - unemployment, foreclosure, divorce, illness, deployment or death of a loved one.

Today I am making some choices about how to spend my time and money. I am also making choices specifically connected to what to write about. These are the easy ones. Still ahead, I want to make the best possible choices about how to live my life so that I can do my part to make this a better world. I want to make choices that will help our environment, help bring about peace, help those around me experience a higher quality of life. It has much less to do with where and how I spend my time and money than the amount of compassion that is in my heart, and especially the compassion I extend toward others.

We all make choices all the time. May wisdom and compassion guide us to make better ones as we move forward in our lives.

Sunday, November 1, 2009

Listening to the "Experts"

Back on 5/17/09, I wrote about giving a presentation on Facilitated Communication, accompanied by three young men whose lives have been changed by learning to type. Just this past week, one of them, RB, gave a presentation of his own. This time, there was a warm, welcoming, standing-room-only crowd, and his message came through loud and clear.

Giving presentations like this is part of RB's new business plan. Now in his 30's, he hopes to use his talent as an artist and poet, along with his desire to help others understand autism, to become a little more independent and self-supporting. His plans also include writing a book and giving talks to local (or not-so-local) organizations that might be interested in what he has to say.

Just two or three short years ago, RB startled me completely by typing that one of his dreams was to become a public speaker. I simply could not imagine this young guy staying in the same place long enough to even attend a public talk of any kind, much less give one himself. I tried to fake some enthusiasm for his idea and put the idea aside - until I learned that he was typing essentially the same message to another of his loyal facilitators whenever the two of them got together to "chat." We could no longer ignore or dismiss what he was trying to tell us. And we began to share his dream with the ever-growing, ever-supportive team that works with RB to make things work as smoothly as possible in his challenging life.

Every step of the way, he has met and surpassed our expectations, and we no longer have to fake our enthusiasm when he types about his passion to become a spokesperson for those living with autism. He wants to help parents and professionals, anyone who will listen, to better understand what is going on and how to best help those they care for and about.

Somewhere along the way, RB took charge of his own team meetings, helping to set the agenda each time, and addressing any/all issues that might be causing concern, then waiting patiently (or not so patiently sometimes) for the rest of us to put things into motion so that his dreams might come a little closer to reality.

A very supportive team helped this week, and the event was a huge success. I will attempt to summarize some of the main points from his presentation, which will no doubt be available in some sort of published form in the not-too-distant future. I will also invite RB to add comments of his own here on the blog in the future.

Consider these when dealing with autism:

(1) Heightened sensory input. RB says he hears, sees, feels things that the rest of us don't seem to notice. He senses things before they happen. It is hard to filter out all the sensory input he is receiving.
(2) Behavior. RB says much of what his body does is simply NOT under his control. "Imagine having your body do things that are totally appalling to you."
(3) Focus. Whether it's a matter of too much or too little, people with autism are challenged in this area. "It is not easy to be in a more focused state, but I can do it when I need to, or when I have the opportunity to type."
(4) Intelligence. "I want to tell that they have it all wrong and that we are not retarded but instead we are highly intelligent and advanced people."
(5) Emotions. RB experiences a wide variety of intense, very NORMAL feelings, including anger, frustration, depression, joy, and love. He says he can read other people very well. "I can feel the energy toward me."
(6) Communication. Typing has been the answer for RB. He says it literally has saved his life. "It is no longer a mystery to me why people like being together."

If this fits with what you've already learned, move to the head of the class. If not, do a little quick cramming and move forward. Kids with autism and other related conditions that cause difficulties with communication are waiting to be heard. They have much to say, and so very much to teach us all!

Friday, October 2, 2009

So, why is my heart so heavy?

Leaving the warm, accepting family of folks who attend the Autcom conference every year is hard for me to do. What must it be like for those who are on the autism spectrum and have to return to the real world where so many people they meet every day just don't get it?

Since my return, I have:

(1) spent a couple hours catching up with a dear friend who is still spending time in the local schools, working as a substitute aide or teacher, mostly with young kids who have special needs. Her lament that school staff are overworked and underprepared started the heartbreak process. The teachers and assistants care, they want the kids to succeed, but the cards are stacked against them. There are too many kids with too many needs (and of course not all of them have special ed. labels - there are just a lot of needy kids these days). Many schools are proud to offer "full inclusion" - but in some cases that means there's no place to go when a child is feeling overwhelmed and in need of some down time. Worse yet, too many of those who work with the kids don't have an understanding of the many various sensory issues these kids might be dealing with.

(2) met with a young guy in a very supportive school setting, who is frustrated by the "boring" work he is being given. He wants me to be there with him every day so that he can show his teachers what he's capable of doing. He says he loves school, but how long will that last if his intelligence isn't recognized?

(3) talked on the phone with a parent who lives far, far away. Her son has had two fabulous years at school, using FC for school work, and being fully accepted for who he is. Now he's in a new school, with all new staff, and while they are trying, it's just not working at this point. He's showing his frustration by biting his hand, even lashing out toward others. He's able to use FC at home to tell his mom he's tired of having autism, tired of having to deal with all the struggles that go along with living in his body, tired of waiting for people around him to see who he really is.

And, (4) exchanged email messages with yet another mom (also far, far away) whose daughter has used FC with me in the past, but hasn't had much success using it to express her thoughts and feelings with anyone else. She too is dealing with frustration and anger because life is so difficult when you can't communicate what you are thinking. People around her question the validity of what she has typed in the past, and have no real understanding of her true abilities.

On the other hand, I was able to meet with a friend who used FC just last week to tell me just how depressed he was because things in his life haven't changed fast enough, and he too was tired of living in a body that won't do what he wants it to do. Telling him the various stories of my wonderful weekend with the Autcom folks clearly brightened his outlook, and he kept begging for more. "I JUST NEED YOUR POSITIVE ENERGY EVERY DAY. I NEED TO HEAR MORE STORIES. I NEED TO TYPE ALL THE TIME."

I too need that positive energy every day, and my heart wishes my body could be present for every one of these young people as they go through their day. I don't really need to hear any more stories. I just need to see more people opening their minds and hearts to exciting new possibilities. We are all getting tired of waiting.

Wednesday, September 30, 2009

Autcom impressions

I just returned from the annual get-together of the Autism National Committee - http://www.autcom.org - and am filled with awe and inspiration.

What sets this particular group apart from the rest is that it's run by and for people with autism, with a strong focus on all that is good and positive about being somewhere on the autism spectrum. I have been attending their conferences for several years now and have never been disappointed in any way.

Rather than go on for far longer than anyone would want to read, I will try to summarize, and of course that means I am running the risk of missing something important. My best advice: visit the web site; make plans to attend the next conference, October 15 and 16, 2010 in Milwaukee, Wisconsin. (Practically in my backyard - can't wait!)

Three very strong audio-visual presentations included (1) "The Power of Words" - a stirring reminder that how we talk about people, ourselves and others, means a LOT. Mayer Shevin wrote the original ("The Language of Us and Them"), and Judy Endow put together this powerful PowerPoint presentation, with music composed and played by her son Daniel. (2) An impressive and amusing travel documentary in the works featuring two long-time FC users, Larry Bissonnette and Tracy Thresher, who recently traveled with a camera crew to such far-away places as Sri Lanka, Japan and Finland. Both of these amazing men have been typing for a long time now, currently needing little or no physical support - and both are starting to talk by reading what they have typed. It's amazing! (3) Another documentary in progress, the joint project of Rob Rooy and DJ Savarese. The segment we viewed showed a Readers Theater presentation, written and directed by DJ, telling his life story, and put on by his friends and peers at Grinnell High School in Iowa. That young man has talent, and quite a story to tell!

Exciting news from the research field includes a study from MIT showing the high (but often hidden) levels of stress and anxiety that people with autism often experience. Matt Goodwin shared a new way to monitor these varying states of arousal using just a simple wristband to transmit the information. The costs are still far out of reach, but the potential is there for us to have a much better understanding of what might be going on inside.

Along similar lines, Dr. Margaret Baumann talked about exciting new developments at Massachusetts General Hospital, where she has been a pediatric neurologist working with people on the ASD spectrum so long that most of her patients are now adults. There's a large grant now available to improve medical services for these adults, along with a new understanding that many of the behaviors we associate with autism just might have a medical origin. Such issues as mitochondrial disorders, gastric reflux and other G-I problems are getting looked at much more closely.

Jessica Butler reported on the use of restraints and seclusion with kids in the schools, preaching to the choir here, but reminding all of us that we might have come a long way toward inclusion, understanding and acceptance - but we have a very long way to go!

Allen Kurtz reminded us not to worry about the words "science" and "evidence-based" practices, but rather worry about those who use such terminology to promote their own self-interests. When new evidence is presented, those who are "stuck" in their own ideology often can't change their theories to fit the evidence. Instead they tend to dismiss what is happening before them. It's time for a paradigm shift with regard to those who type to communicate.

Many individuals gave presentations during the breakout sessions, telling their individual stories. It's impossible to attend all of these sessions, and just as impossible to adequately tell their stories here. But I think it's safe to say in summary that people on the autism spectrum are taking charge of their own lives, and changing the minds and hearts of those around them. There is a unity among all of them (and those of us who love and support them) that has the power to change the world.

Sure wish you could have been there to experience it first-hand. Maybe next fall in Milwaukee!

Friday, September 4, 2009

Babies are SO smart!

Don't you love it when some important person comes out with a book or theory that says just what you've been thinking for a long time (or maybe even talking about, but no one seemed to be listening)?

Recently I have heard two different discussions on Public Radio about the surprising intelligence of babies. It isn't just me and it isn't just grandmas everywhere - Babies really ARE getting smarter! Why didn't they listen to us?
I have also been reading about the relatively new idea of neuroplasticity. (See: "The Brain that Changes Itself" by Norman Doidge). It isn't just babies - we all have a lot more ability to learn and change than we've ever been given credit for.

I won't bore you with stories about my amazingly smart grandkids and all the cute, clever things they say and do. Suffice it to say, they amaze all of us on a regular basis - and we love it!

But what does this mean to all of us? For one thing, it underscores the importance of early stimulation and ongoing challenge to further intellectual growth and development. It also means schools that prepare teachers for our classrooms have to be on top of all ongoing research so that teachers are up to speed when they enter the classroom, and not simply doing things the old way - or the way they were taught.

It means we can never truly measure a child's intelligence, should never, ever give up on a person's potential, and should do away completely with the long-standing practice of labeling a child in order to provide some extra services in our public school systems.

Thinking about the many kids I have known in special education programs, and especially those who never quite qualified for such programs (it is embarrassing to say we considered them not "educable") and putting the reality of their early lives up against the early experiences of, for instance, my own grandkids, we have done these kids with "special needs" a terrible injustice. Because we vastly underestimated their intelligence and were stuck in our old ways of thinking about the brain, we did all the wrong things. In some cases, we removed those who were the most severely impacted by a disabling condition such as autism or Down syndrome from their homes and communities, placing them in sterile institutions where their basic needs were met, but not much of anything else was provided - during those critical early years, and possibly even for the rest of their lives!

Or maybe we told their parents to take them home and love them. Don't have unrealistic expectations for them, because they might never talk, walk, read, write, ride a bike or whatever. Hoping for more, or allowing yourself to think there might be an intelligent person locked inside, would only lead to disappointment and frustration.

At more than one point in my teaching career, I was accused of building false hopes in parents of kids like this. But the truth is that our system is set up to build false despair. We don't give the kids or their families enough credit for what might be possible. Sure it takes love - lots of it - and of course patience. (How often have I heard "You must have so much patience to work with kids like that!")?
But unless we combine that with sincere belief in a child's potential to learn - if we just find the right way to "teach" - we are failing that child and their family.

All the exciting new research says babies are soaking up information all the time, and if something tragic happens to damage a particular area of the brain there are many, many ways around that impasse - and the brain will do all it can to find one of those ways. We can't ignore this. It's a huge paradigm shift and means so much for all kids, but especially those who carry labels that might indicate learning challenges.

Wednesday, August 12, 2009

Excitement in/on the air

It has happened again. ABC has featured the story of Carly Fleischmann for the second time now, and she has also appeared on Larry King Live. Carly is a young girl from Toronto who types to communicate. The very positive reaction from viewers certainly warms my heart. But of course I also have to restrain myself from shouting out something like, "Where have you people been for the last 20 years?" or a version of "See, I told you so!"

Carly's communication hasn't come easily. According to the script, she is completely nonverbal and has an extremely hard time controlling her body - clearly shown in footage of her early years, as well as more recent scenes from her everyday life.

It would also appear that the methods used with Carly were different than what I tend to do. Once it was recognized that Carly could type, she was "made" to type words in order to get what she wanted. There is also a reference to her finger hovering over the keyboard sometimes for "hours" before actually typing a letter. My approach is much more gentle and supportive. If a child isn't ready/able to type on their own, I provide both physical and emotional support immediately - and lots of it. I must accept the reality that this might help explain why the young people I type with so seldom move on to typing completely independently, as Carly is shown to be doing.

But the road to independence is a complicated thing, and not everyone is in agreement as to its importance. Obviously, it helps immensely toward acceptance of the validity of the typed message if no one is actually touching the person while they type. I choose to defer to the wishes of the individual doing the typing - if they are truly interested in typing on their own, then let's go for it. If they express to me that they still need my support to get out their thoughts and feelings, well, then that's what we do. For the most part, I believe a person will become independent much more quickly if they are in a situation where the people around them - the family, school, and community - are totally supportive and eager to hear what they have to say. It doesn't work nearly as well (or at all, maybe) when one is surrounded by critics and skeptics. Who can blame them?!?

Meanwhile, I wait once again, hoping that this new excitement over a girl in Canada, who is suddenly able to express herself on the keyboard and tell the world what it's like to have autism and be unable to speak, will spill over the border just enough to raise awareness and interest. The kids I work with have a lot to say too, and would love to have a new audience. They are no doubt tired of preaching to the choir - that would be their parents and I, who have listened over and over again to their pleas for understanding.

Sunday, August 9, 2009

Here's How it Happens

Since my retirement from the classroom in 2003, I have found several different ways to stay involved in the field of autism. I have written already about the opportunities to give presentations, which I try never to pass up.

My favorite involvement continues to be working one-on-one with an individual who is struggling to communicate. Most often, I am contacted by a parent who has tried just about everything else, has heard the controversy over FC, and is willing to give the method a try - hoping against all hope that their child might be one of those who has something to say. Or more likely, afraid to have their hopes dashed one more time. They've been disappointed so often, but can't quite give up - these are some of the most tenacious people I have ever known. (My critics say I am preying on gullible parents and giving them false hope. I say they've been living in false despair, based on our misperceptions of the abilities these kids really have!)

Last week, I traveled across the state to meet "B" at the request of someone who has known him for several years, had heard one of my presentations, and dared to believe enough in "B" to give FC a chance. Within minutes of my arrival, "B" was sitting at the computer with me, we were having a typed conversation - full sentences, complete with correct spelling and punctuation - and we had a teacher close by crying tears of joy.

"B" is near the end of his time in the public school system and has been considered to be "severely cognitively disabled." What usually goes along with such a label is a program that focuses on functional life skills, helping the student become a more functional part of society - self-help skills, social skills, job skills, etc. Little or no academics are included for most of these kids. It's the way I taught for most of my career; we all thought we were giving the kids what they needed most.

Essentially nonverbal, able only to repeat words or phrases ("echolalia"), but unable to use words in a meaningful way, "B" is a friendly sort of guy, but has had some rough times along the way. In fact, he was attending school only for a short part of each day during the last semester because he had become quite aggressive toward a classmate, and it was feared that someone would get seriously hurt. School staff had tried various behavioral and sensory approaches, but they knew they hadn't gotten to the root of the problem.

"B" smiled eagerly as he became more fluent in his typing, realizing the power he had while I supported his hand and he typed his thoughts. I wasn't surprised at his message: He wants us to tell everyone at home and at school that he is smart, he wants to thank us for believing in him. He wants to type every day and he wants much harder work while he is in school. And he is unable to control himself when his overly sensitive nervous system becomes overwhelmed (as in a noisy classroom with one particular student making loud noises).

I had started out in my typical fashion, asking "B" to type his name - we tried it with no physical support, but he wasn't able to do that - followed by basic questions about the day of the week, colors of clothing, etc. But I quickly sensed that "B" was able to move beyond that, and was, in fact, eager to do so.

If it hadn't been for my experience with a different young man, "N," I might not have moved on so quickly. I first met "N" about two years ago, in his home, and he too was nonverbal except for a few repetitive words or signs that he used to make his basic needs known. When I sat next to him the very first time and asked him to type his name, he did so immediately. Then as I thought about my next question, he "borrowed" my hand which was still holding his, looked across the table at his mother and typed, MOM NEVER STOP BELIEVING IN ME. "N" was 12 at the time, and he too had not been part of an academic-based school program. He too wanted to type every day, wanted everyone to know he's very intelligent, and was appreciative of the unfailing support he had felt from his loving family. He caught on immediately that typing to communicate gave him power he hadn't had in the past. He could use typing to let the people around him know what he was thinking and feeling.

In my typed conversation with "B," I typed a statement or question and then extended my hand to provide support so that he could read and respond. Just seeing that he could actually read and process what I was asking was enough to make his teacher cry. He's 18, and up to this point had not been able to demonstrate to anyone that he was able to read. But it was so much more than that. We typed for close to two hours and he didn't want me to leave.

I am filled with joy at my experiences, but also with frustration because I know there are so many more just like "B" or "N" who could benefit from FC. It's hard to deal with the anger that creeps in when I think about the naysayers who stand between these amazing young people and the voice they deserve. For the most part, the only ones who are respected for what they have to say are those who have become independent in their typing, and even then the critics find reason to doubt what is happening.

Why is it so hard to admit we've been wrong for a long time? Why can we not all rejoice in the realization that these young people may not be able to speak (or type without support) but that doesn't mean they don't have a lot to say, and it doesn't mean they can't think, learn, feel, and have opinions just like the rest of us.

Sunday, July 19, 2009

Learning about Autism

So, what has Grandma learned about autism anyhow? Where do I start? I have already written a little about issues related to behavior and will no doubt write more on that topic in the future, but for now let's just say that at first I thought it was all about behavior and now, some 30 years later, I am quite sure that behavior is simply the visible sign that something is amiss with the way these kids fit into the world around them.

It's not as simple as that. Sorry, but absolutely nothing connected to autism is simple. There is no simple cause, no simple cure, no simple definition, no simple anything. There is also virtually no agreement on anything, with one possible exception. I think it is possible we have come to agreement (and I say this tentatively because I already feel the possible onslaught of those who will disagree with me - that's just the way it is) that early intervention can and does make a difference.

Parents are no longer advised to put their young, newly-diagnosed child into an institution. Hopefully, they are also not advised to "accept him as he is, and don't expect too much." Maybe I could also dare to hope that parents are no longer blamed for their child's condition. I came into this field in the days when "refrigerator mothers" were actually told they had somehow failed to bond with their child, failed to love him/her enough, so that in addition to all the disruption they had already endured in their lives, they could now add a heavy dose of self-blame - the chaos they were experiencing in their family was somehow their own fault! In the dark days of Bruno Bettleheim, what was recommended next was that the child be removed from the parents, so that no further damage would be done.

We might agree now that kids with autism can be helped, but as soon as we say that the "fight" is on. Some will suggest dietary changes, others prefer medication; some want 40 or more hours of home therapy, others want early childhood programs that promote inclusion and sociability. Some say focus on sensory integration, some want speech therapy, some want behavioral programming, some recommend play therapy. What are loving, concerned parents to do? How do they choose? What if they invest far too much time, energy and money in a program and nothing changes? What about the guilt then? Is it back to being their fault for choosing wrong? And what about the rest of the family? If both parents need to work to meet expenses, how can they possibly devote all the needed time to the interventions that might help their child?

As professionals, do we set parents up for almost certain failure when we suggest that with the proper intervention, their child has a good chance for a relatively successful life? What does that mean, anyhow? Will they be able to live independently? Drive? Get a job? Marry? If not, how will they be cared for in the long term? How much of an investment is needed in the early years for the best possible chance of a positive outcome somewhere in the future?

Retreating now to my very personal views on this, I think having a positive outlook for the future is the single most important thing any of us can do when dealing with a young child who has autism. Beyond that, each family can only do what is comfortable for them. Difficult choices will have to be made, and it probably is wise to accept from the very beginning that they will have to advocate for what is best for that child every step of the way.

Some of the positives:
---- Better understanding of autism among most professionals;
---- Earlier and more accurate diagnosis;
---- General acceptance that early intervention DOES make a difference;
---- A wider array of possible interventions available;
---- (Generally) more appropriate school programs available;
---- Some of these services are funded; it doesn't all have to come out of the parents' pockets;
---- Many, many more ways to find support. Local groups, Internet resources and listservs. When I first became interested, there was nothing for the parents.

I will resist the temptation to make a similar list of negatives, and instead state that what I saw happening in the public schools as I came closer to retirement could best be described as a train wreck: We had learned much; we were starting to "get it" and could maybe begin to develop programs that would meet the needs of the increasing numbers of kids with autism who were entering our schools. But at the same time, budgets were being cut everywhere. Parents who were strong advocates still had a lot of power and the laws were on their side. They could, and did, fight for the programs their kids needed and deserved. But the ones who were aware of what was happening soon came to see that if they demanded a Cadillac program for their child with special needs, something else had to give. Programming for their other children, or the kids down the block, would begin to suffer. There was simply not enough money available in most school districts to do what we knew needed to be done. In most districts around here, the collision has already happened, and it's the kids who have suffered. It's hard for me to talk about quality programming in the schools - for kids with or without disabilities - without mentioning that it just isn't going to happen unless drastic changes take place in the way we fund public education.

Thus it really falls back on the family to seek out and implement whatever interventions seem most likely to help their child with his/her unique needs. The good news that these kids can be helped should go a long way to offset the stress that comes with trying to sort out the vast amount of information that is now out there. I recommend following your instincts and choosing a path that fits with the family structure that already exists. Try something that "feels right" and discard anything that doesn't. But never, ever give up on your child. They need you to believe in their potential!

Sunday, July 12, 2009

Facilitated Communication Basics

This will be a quick, basic introduction to Facilitated Communication, from my personal perspective. I sure hope anyone with something to add will do so, and if you have questions or want further information, please let me know.

FC, as we'll call it from here on, was used very sporadically and generally without much fanfare until Rosemary Crossley started using it with children in Australia. Working in an institution for those with very severe disabilities, her first successful experiences were with young children with severe cerebral palsy (CP). One of those very special kids, Anne McDonald, is now an adult and actually lives with Rosie and her partner, Chris Borthwick. Anne, once judged to be profoundly mentally retarded, has gone on to work toward advanced degrees using typing as her means of communication.

The method involves a combination of (1) emotional support and encouragement, (2) physical support as needed, and (3) access to a letter board, choice board, or keyboard. Independent typing is of course the ultimate goal, but many people have such significant motor impairments that they may continue to need full physical support in order to express their thoughts. In general, it is recommended to begin fading the physical support early in the process, as well as having the FC user become comfortable using the method with several different facilitators. With support and access, along with lots of practice, many individuals who are unable to use spoken language in a meaningful way find an effective means of communication. FC can be used along with other interventions, is very low-cost, and opens up the possibility of unlimited communication.

News of the method was brought to the U.S. in the early 1990's by Dr. Doug Biklen of Syracuse University, amid much media excitement; but it wasn't long before the controversy set in. Making a long story as short as I can, the problem seems to be the difficulty in accepting that individuals who appear to be so severely impaired in so many ways could possibly be saying what is being typed. It hasn't helped at all that trying to set up some sort of double blind test situation to "prove" the validity of the method hasn't worked well at all.

But more and more stories are being told. More and more individuals are becoming independent in their typing. And, some positive studies have been published. I will include a few references for further reading and would love to have questions or comments posted here to get a discussion going.

To learn more about FC: http://www.inclusioninstitutes.org

Check out this awesome video, available at major libraries across the U.S.:
"Autism is a World" - the story of Sue Rubin

A chapter from my book (SEE US SMART!): http://www.robbiedeanpress.com

Saturday, July 11, 2009

Family vacations

Again, off the usual track, sort of . . .

We had a great time on our annual family vacation, but Grandma just keeps learning and learning. Consider, for example:

(1) When you are part of a big group living together for any length of time, it's wise to keep in mind that you might think you have found the best way to do something (like wash the dishes, or bait a hook, or serve food to a crowd, or whatever) but it's not wise to require that others do things your way. In fact, don't even make suggestions unless asked. Keep your mouth shut and your thoughts to yourself.

(2) You might have raised all your kids in the same household, and they might even all have the same two parents, but that doesn't mean they think alike. They might have very different ideas about parenting (just for example), or religion, or politics, or whatever. The wise grandma avoids stress by staying clear of these topics, and letting everyone do things their own way.

(3) If someone asks if there's some way they can help, be prepared with an assignment for them. DON'T criticize the way they do things and DON'T get upset if no one asks. It's just not worth it!

(4) Never miss an opportunity to listen to your kids or grandkids tell you about their lives. Meals can be simple, dishes can wait; nothing is more important than quality time with the people who mean the most to you.

(5) Watch the interactions between kids. We had quite a group this time - Ten kids between the ages of two and 19, not all of them blood relatives, and one who didn't really know the others at all before this trip. Kids are amazingly flexible and open to new experiences. I particularly enjoyed watching the older ones when they were having fun with the younger ones - being patient, doing some gentle teasing, finding pleasure in making the younger ones happy. Kids are great!

(6) It's perfectly OK, and even advisable, for grandparents to take an afternoon nap, or go to bed early. Vacations can be exhausting!

(7) Laugh a lot and be grateful for the moment. Try not to worry about all that could go wrong (I know, this is not easy! Grandmas are SUPPOSED to worry!) Enjoy!!!

My Friend "Fred"

(Totally off the topic of autism, inclusion, etc)

When my husband Paul and I were both fully retired, we chose to move to a condo in downtown Madison, Wisconsin. That was five years ago now, and we both agree it's one of the better decisions we've ever made - though it was definitely HIS idea, not mine, at the time.

We can walk just about everywhere we want to go, we meet so many interesting people, and feel we will stay young forever being surrounded by people who are connected to the University, the Capitol and/or the evergrowing business of hospitals, research, and technology. It's a great place to live and a great place to grow old - all the medical care we could possibly need is just a stone's throw away, and there's a beautiful long-term care facility just up the block.

Along with all these blessings come many, many lessons to be learned (AHA! - the theme of this blog!) One involves the nature of homelessness here in the heart of paradise. Everywhere we walk we see the effects of the bad economy, or bad luck, or bad choices - whatever it is that causes people to end up on the streets with no place to call home. As homeless living goes, Madison is one of the friendlier places to be. The people who work or live downtown, and all who walk the seven blocks of State Street - our local pedestrian mall that joins the state Capitol and the University of Wisconsin - mingle relatively easily with those who have no home. But it does get bitterly cold in Wisconsin in the winter and the local shelters are always filled to capacity, leaving some on the streets overnight, seeking whatever shelter they can find.

I think "Fred" was one of those who slept outside but I am not really sure. I first encountered him over a year ago, standing on the sidewalk outside the convenience store just a short block from our condo. He stood out because he was overdressed for the weather, wearing several layers of clothes topped by blaze orange pants and a knit cap. Close by were two duffel bags, no doubt holding all his earthly possessions.

Slowly, the man became a part of my life - in a way. I seemed to see him everywhere I walked in the neighborhood. He was always on his feet, standing or walking, up one side of our street and down the other. Always dressed the same, always with the two duffel bags. A big man, with a bad leg, he moved very slowly and seemed to be in pain. I started to talk about my "friend," the homeless man in the neighborhood, and eventually had to make up a name for him. He became "Fred" to me and I told others about him. Only once did we speak. We happened to be sharing the same stretch of sidewalk, same side of the street and walking toward each other. It was one of the colder days last fall, and I asked him if he had a place to stay at night. He smiled and said some nights he did. I handed him the $5 bill in my pocket and wished him well. He thanked me and said he was doing OK. I tried to judge his age and guessed he was in his 30's.

Almost immediately I started to worry. Had I done the right thing? What would I do next time we see each other? Surely he would recognize me in the future? Do I fill my pockets with sandwiches or granola bars --- or $5 bills? Is there something I should be doing to find him a place to stay?

Not much changed. I continued to see him on almost a daily basis, until it became very cold outside. He had added a dark blue one-piece snowsuit, but was still immediately recognizable by his lumbering, painful gait. When I realized I hadn't seen him for some time, I became concerned - until I thought about the reality of the situation. It was COLD out, and I was staying in - of course I hadn't seen him. He was there; I was the one who was missing! As soon as it was warm enough for me to venture out again, "Fred" was there and we were both back in our routines in the neighborhood.

Three weeks ago, there was a story on the local news. A homeless man had been found dead on a park bench on the grounds of the Capitol. The cause of death was believed to be "natural causes" and the man was known to local police as a regular in the area. His name was Dwayne Warren and he was originally from Chicago.

Immediately I started obsessively searching for Fred. If I saw him just once, I would know it wasn't him. Walking was too slow, and might put me on the wrong block at the wrong time, so I drove in my car at different times throughout the day. It seemed strange to be driving on the streets I usually walked, and I had to be careful to remember that many of them are one-way streets - something you don't always think about when you're on foot.

There was a picture in the paper - but I wasn't really sure. His age was given as 38. And then the stories added details such as pain in his foot, a blue snowsuit, always a knit cap on his head, always duffel bags close by, always walking the same streets, always friendly, never wanting to be a burden to anyone.

I went to the memorial service yesterday. I learned that Fred was Dwayne, and he was born within days of my own son Doug back in 1970, dying just two weeks short of his 39th birthday. There were about 20 of us there, all with similar stories about how Dwayne had impacted our lives, all sharing our guilt because we didn't know what to do, and hadn't done enough to help.

I do believe things happen for a reason. I also believe that Fred/Dwayne is now free of his pain, and that lying down on that park bench and never waking up is about as peaceful a way to go as one could hope for. Now it's up to the rest of us to figure out how to help the next homeless person we meet, or how to change society so that people who find themselves living on the streets get the help they need.

One of the men who spoke at the service had taken Dwayne out for a burger and bought him thermal boots to get him through the winter. He broke down crying as he shared his guilt - Dwayne continued to wear those boots into the heat of summer, resulting in a serious infection in his foot. The man blamed himself for not taking the steps of finding summer shoes, or getting him the medical help he needed. We all blamed ourselves for something. No one had a clear answer for the best way to help in the future. But we all agreed Dwayne had made a significant impact on our lives that we will never forget.

Sunday, June 21, 2009

Learning about behavior - Lesson Two

Here's a really simple idea. Put the horse before the cart.

What we used to do was hold out a reward in front of a child and ask him to do something. Call it a demand, a stimulus, a command, but it was rarely anything so mild as a request or suggestion. The child was then expected to follow with the proper response. If he did what was asked, he got his reward. The rewards were deliberately chosen from things the child really liked - candy, stickers, soda pop, TV or computer time, even money. Naturally the thinking was that if what we were offering was highly motivating, the child was more likely to do what we wanted. The rewards could be immediate (a single piece of candy) or a little more delayed (earning chips to trade in later for something special).

If a child wasn't behaving as we wanted, we would often take away privileges. Again, we tried to use things that meant a lot to each child. If he liked to play with trains, that would be the first thing we took away when his behavior wasn't acceptable. And for kids who loved recess, we might even take that away. We thought we were using behavioral techniques that should be effective. Sometimes they were, but often things got worse. We had a lot to learn!

Putting the horse before the cart was an idea that came from a wonderfully wise occupational therapist who helped me learn so much about kids, behavior, out-of-whack sensory systems, and the value of sensory integration.

The simple part: give them what they need/want, as much as they need/want (within reason, and as long as it's good or at least harmless). Let them have their fill, and then try some meaningful work or requests for particular performance goals.

Instead of using time on the swing as a reward for finishing the first grade math work, let the child swing first and work later. If the child is hungry or thirsty, give him what he needs before asking him to sit and listen. If Disney movies are particularly motivating, watch one segment then work, watch another segment to help them organize themselves before leaving for a class that might require them to hold themselves together for a longer time than usual.

We ended up running a classroom that was much more like a therapy room - swings, a mini-trampoline, music playing, a wide variety of toys and games. We helped the kids learn to play before asking them to work. We kept our "demands" to a minimum, trying always to be sure there was a valid reason for what we were asking kids to do - never just busy work, and certainly never just to establish their compliance.

We were ever on the alert for signs that a particular child was dealing with sensory issues that interfered with their success at school. And then we tried to intervene in the most appropriate way. What I learned from that particular O.T. was that most kids will seek what they need in the way of sensory input. If they need a quiet place with little stimulation, they will run and hide. If they need more activity, they will bounce, run, rock, whatever works for them. If things are chaotic and overly stimulating, if a situation is particularly anxiety-producing, they might scream or become aggressive. If their needs can possibly be met in advance, the chances for undesirable behavior are greatly decreased.

It's a powerful combination: meet their needs and make sure we making reasonable, meaningful requests.

We gave up the candy, chips, and soda pop. We did away with "time-outs". We didn't need them any more. Everyone was much happier. School became an OK place to be.

Wednesday, June 10, 2009

Learning about behavior - Lesson One

As the years went on, I gradually became the teacher who was willing to work with the most challenging students in whatever school I found myself. In many cases, the kids were "challenging" because of the severity of their needs - they couldn't feed themselves, or weren't toilet trained, or needed to be lifted and moved from one position to another throughout the school day. None of us had learned anything about how to "teach" kids like that, and not all of us were comfortable with the type of care they needed. Other kids were highly mobile, but unable to speak or write - again the idea of presenting a watered down version of what was being taught in regular classrooms didn't seem to fit, and many teachers felt unqualified to "teach" in such a situation.

The ones I found most endearing were the ones who seemed to know what we were asking them to do, but simply refused. Or the ones who managed to outsmart any behavioral plan we might try to put in place to get them to comply.

My training in the techniques of behavior management had been quite good, but it didn't suit me, and it didn't seem to work for most of the kids I met. I kept trying, and they kept trying to let me know they didn't like what I was doing at all!

And then I attended a presentation by Anne Donnellan of the University of Wisconsin, who was saying things I had never heard before. She maintained that a child who is unable to speak is actually communicating in the only way available to them when they act out in ways we consider to be inappropriate. I loved the idea! It fit with my experience exactly. And the kids who misbehaved the most were probably the ones with the most to say! What an idea: Behavior IS communication! Maybe we should listen rather than manage.

At about the same time, I became a member of TASH, an organization dedicated to issues related to those with the most severe and challenging disabilities, those who might have been labeled at the time as "severe to profound"-ly mentally retarded. The term sounds so very inappropriate now, but at the time I was excited to find myself among people who truly cared about these kids and wanted to provide whatever was meaningful in the way of an education for them. For the most part, we focused on teaching them functional life skills - things we thought they needed to survive, to live as independently as possible later in their lives. They didn't really present challenging behaviors as such, but most of them didn't learn much in the way of life skills either.

It wasn't until I learned to use Facilitated Communication that it all came together for me. With a communication system that really worked for them, kids of all ability levels started showing us what they really knew. But it was so much more than that. Kids who hadn't shown any interest in the life skills we were trying to teach actually started doing whatever they possibly could on their own. And the kids who had been labeled as "behavior problems" seemed to have a whole new approach - they actually wanted to cooperate, and most of the behaviors disappeared.

It didn't happen overnight, of course, and if they encountered people who refused to see their intelligence or respect their communication as valid, some of the problems became even more serious than they had been before FC was introduced. Many had strong feelings of anger or frustration that needed to be dug out and dealt with. But we could do that, in a much more respectful manner than what we had been trying to do with rewards and punishments. We were talking things through, changing things whenever we could, and helping them deal with things we couldn't change.

Looking at my grandkids, as I so often do, I see similar lessons we've all learned. A major part of what happens during the "terrible twos" can be explained by the child's inability to communicate. They don't have a way to tell us what they want or need, or what might be hurting them, worrying them, causing them distress. Some of my younger grandkids have been taught basic sign language from the time they were infants. What a difference it makes when they can put their fingers together to ask for "more" or make the sign for eat, drink, or please to let us know they want something. Not that tantrums or meltdowns have been eliminated completely, of course, but things go so much better when there is an effective means of communication in place.

Thursday, May 28, 2009

Language learning

I spend a lot of time watching my grandkids - especially the youngest ones. They have me totally convinced that the human brain is truly amazing - a sponge for new learning, perhaps most dramatically when it comes to language.

The youngest is almost two now, and her vocabulary is expanding by leaps and bounds. She eagerly repeats anything she hears, and plays around with new words and concepts as if they were toys from Wal-Mart. Just the other day, I teased her with "procrastinate" as she tried to avoid bedtime, and then "precocious" as she teased me back by repeating my first word over and over again. I am quite sure the next step will be for her to surprise us by using one or the other of these words in the right context, totally unprompted!

And her older sister, who resisted with all her might my grandma/teacher efforts to learn letters and numbers until just a few months ago, now carries paper and pencil with her around the house asking any available adult how to spell the names of everyone she knows, every word she hears, etc. She just turned five and notices words and letters everywhere she goes.

The brain is obviously programmed from very early on to figure out language patterns and make sense of both the spoken and written language (or languages) to which they are exposed. Learning takes place with or without structured practice, but naturally develops more rapidly in situations where the child has more exposure and encouragement.

So what if the child is unable to speak? Or unable to hold a writing tool? Unable to attend to anything for more than a second or two at time?
Unfortunately, we have made some very poor assumptions about this for far too long and many kids have been declared "cognitively disabled" because of our misunderstanding.

Young kids with autism, Down syndrome, or other conditions might be limited in many ways, but their brains are functioning in much the same way - listening, watching, and constantly learning. Their brains look for patterns in what they see and what they hear, and their brains are programmed to figure out the language(s) that surround them -- just like their peers who can walk, talk, use writing tools and ask questions.

The lesson I have learned is that young children with disabilities (according to our current labeling system - maybe someday we'll drop the labels entirely) deserve to be exposed to an environment rich in written and spoken language. If they are unable to ask questions, the adults in their lives must provide even more in the way of explanation and stimulation to encourage the development of their brains in those critical early years. How tragic to think that for far too long we thought we were doing what was best for them by placing kids like this in institutions or special schools.

I remember my personal "training" in such an institution, where I was instructed to speak to my students in very simple language, using only basic vocabulary and always using the same short words or phrases - so as not to confuse them, maybe? Many of the parents received the same sort of training. We tried to follow the rules, but fortunately for the kids involved, most of them lived in families where books were plentiful and dinnertime conversation was lively and stimulating. As for me, their teacher, I simply could not play the game that way. I had to be myself, had to interact with all of my students as if they understood every word I was speaking. (Whew - lucky for all of us, as they eventually were able to show me they understood all too well!)

Thanks to all for being so patient and forgiving. My hope is that others might learn from my experience - in this area and so many others.

Sunday, May 17, 2009

Conference presentation

Just a week ago, I had the privilege of presenting a breakout session at the annual conference of our state autism society. For several years, I had submitted a proposal and been rejected - till last year, when I was given the chance to present the basics of FC (what it is, who might benefit, history and controversy). This year, things were even better, because the conference committee actually encouraged me to include at least one speaker who uses FC to communicate.

As it turned out, I had not one, but three, young men willing to participate. Thanks to the dedication and effort of their families and various support staff, all three were able to be present and take an active part in the discussion. It was wonderful!

I again focused on the basics, but had proposed that we move beyond the controversy to talk about the many success stories that FC has generated. My three very special friends made my work a piece of cake!

R.B. has now given several presentations of this sort, and it's truly amazing that he is able to put on his suit and tie, attend a conference, and remain seated throughout the entire time of our 75 minute breakout session. He attended at least one other presentation as well.

D.M. is a little newer at this, and had more trouble remaining seated, but his message is a powerful one that grabbed everyone's attention. He too was able to attend other sessions during the conference.

Q.P. is still in high school, and newer yet at public speaking. He needed to leave the room a few times, but remained connected to the ongoing conversation and was willing and able to add to the discussion whenever he had something to say.
Each of these guys uses FC a little differently, and their support teams are at differing stages of proficiency. All of us agree that the acceptance we are feeling right now is extremely exciting.

Sadly, the attendance at our session was very light. For a conference that attracts close to 1000 attendees, we had hoped to have a larger crowd. But the 20 (or so) who were there appeared to be sincerely interested and truly impressed.

It's a foot in the door. Now we wait to see what happens next.

Monday, May 11, 2009

What's the big deal about IQ anyhow?

Somewhere a long time ago, we went terribly wrong when we thought we had found a way to quantify intelligence and assign number scores to everyone. So much time and effort have gone into developing tests that give an objective figure that is supposed to tell us what a person's ability to learn might be. And then we carried it further yet by putting labels with the numbers: terms like "gifted," "moron," "imbecile," "trainable," even "normal" should never have been allowed into popular usage. So much damage has been done! Can we possibly bring about a serious paradigm shift and look at all people as people, with varying learning styles and learning curves, varying (and valuable!) strengths and interests? Can we possibly move on with a new way of looking at things?

Being told as a child that one is "gifted" can cause just as much life-long trauma as hearing the term "retarded" being tossed around in one's presence. Could we possibly ban all such labels forever?

In my first year as a teacher, I was incredibly naive but oh so idealistic and full of enthusiasm. The kids in that first class were also my first real teachers when it came to learning about "special" education. There were eight of them, roughly between the ages of six and 12, all carrying the label of "educable mentally retarded" or EMR. For our first month together, we were located in a Sunday School room in the basement of a church one block away from the school in which we were officially enrolled. They must have been working on a more suitable arrangement, or maybe some parent complained, because we were soon moved to a room within the regular public school.

I was thrilled to have a job, and loved the kids. Life was good. Looking back, however, some things were missing. I had no materials, no supervisor (other than the building principal who knew nothing about Special Education), no budget, no integration, and absolutely no time to myself. From the moment we arrived in the morning till I sent the kids home at the end of the day, we were in this new experience together. I was invited to visit the storage closet nearby where a variety of unused books, workbooks and other educational materials were available for my use. It was great - I have always loved garage sales, and this one was all school-related. What more could I ask for?! (Well, maybe a bathroom break and some quiet lunch time, for starters.)

It was the early years of having kids with mild handicapping conditions in the public schools and we all had a lot to learn. The law requiring public schools to welcome "ALL" students into their buildings was still a long way off.

And that is how I got my start at speaking up and advocating for kids. It was only a whisper in that first year, but somehow I boldly told more than one set of parents that I really didn't think their child was "retarded." They might have a problem with attention, or maybe their speech was very hard to understand. Maybe it was a different learning style (I admit I knew nothing about this at this time in my life), or behavior issues were interfering with learning. But I truly believed all of these kids were capable of learning and deserved a more inclusive and appropriate academic education than I was providing in my very limited classroom. If anyone in the school district had been paying attention to what I was doing, I realize now that I might have been without a job after just one year!

Fast forward about 25 years: In the meantime I had taught in a residential facility, a school specifically for those with the most severe disabilities (i.e, the lowest IQ scores), and now find myself back in a regular school trying to make inclusive education a reality for kids who presented many more challenges than that original group did. I have learned so much from the kids, but am still "stuck" in my thinking to the point that I am providing mostly functional life skills training to the kids in my current classroom.

Again, they range in age from about six to twelve, but now the label has changed. These kids are considered to be "moderately to severely cognitively disabled" - comparable to our old label of "trainable mentally retarded." Our classroom is right in the middle of the elementary school, and everyone is supposed to be working to "mainstream" the kids as much as possible.

I was moved out into the mainstream because I had become somewhat of a thorn in the side of the administrators at the special school. I was concerned that too many kids were being isolated from their more typical peers and we weren't following the intent of the law that said all kids should be educated together. My voice was getting a little louder - although I definitely tended to prefer putting my thoughts into writing over speaking them out loud - and essentially I was given the chance to put my money where my mouth had been. No one knew if this would work, and there was lots of opposition from parents, teachers, administrators - even local newspapers. We had never done things this way. The kids would be teased. Teachers in regular classes weren't prepared for this. On and on and on -- barriers everywhere.

I was told to design a program that would allow these kids to work on their life skills in the setting of regular school - how to use a public restroom, move safely through the halls, eat lunch in a cafeteria, play outside during recess, etc. What I learned very quickly (again the kids were my teachers) was that these kids were way ahead of me. If they were going to be in this setting, they wanted to do what the other kids were doing - they wanted books, notebooks, and all the other educational trappings they saw around them. And they wanted/needed academics, not life skills.

This was so new to me. I spent my nights at home combing through unfamiliar teachers' manuals trying to put together lessons that would meet their needs; I used all the interpersonal skills I would muster in the teachers' lounge to get the regular educators to consider including my students in their classrooms.

Then there was the computer that was included as part of our classroom furniture. It was frustratingly new to me, and didn't appeal to all the kids, but for some it had almost a magnetic effect. They were highly motivated to explore all the possibilities (vastly more limited than today's options, as you might imagine) and always unafraid to push more buttons or insert a different disk to see what it might offer. At first I was terrified that we would "break" it and cause major expenses, but as time went on and I found myself busy with other things happening in the room, I gradually let go and turned it over to those enterprising young students who seemed to know much more about this new technology than I did.

To be continued --- I still had so much to learn!

Monday, April 27, 2009

Why "Quiet One?"

I chose this name for my personal blogging because I have always tended to be the quiet one in most social groups. Now that I think about it, I was always the quiet one in school as well. My husband would say it's because I tend to be a "failure avoider" (true!) but I think I was born with a large dose of plain old shyness as well.

Maybe there was a reason for that. After all, in my teaching experience, I have always identified so well with those kids who struggle with communication - the kids with autism who don't speak at all, or those with Down syndrome, CP, autism or other conditions who might be able to say words, phrases or full sentences, but don't really use the spoken word to communicate effectively.

Taking this one step further, I have always loved working with kids who can't use the spoken word to communicate, but are always giving us clues as to what they are thinking by their behavior. I was trained early to use the techniques associated with behavior modification, but quickly found that it didn't suit me very well - and never seemed to work very well with the kids I encountered in my classroom. They could outsmart any program we put in place. And I loved them for doing it!

In one of my college classes (where I never said a word - even though class participation was encouraged and included in the grading process and I cared way too much about grades at the time!), the professor called me in for a personal conference in an attempt to get me to open up. What a trauma that was - I have forgotten most of my college experiences, but not that one!

So, I truly empathize with those who struggle to share their thoughts with others for any reason. I offer them acceptance and patience, and I have learned to follow my natural instincts and work on building trust and relationships rather than developing or implementing various behavior programs.

It works for me!

Thursday, March 26, 2009

A special sort of anniversary

We interrupt this chronological story for something far more important at the moment ---

It was two years ago today, on Hollywood Boulevard at noon, across the street from the famous Chinese Theater, that I experienced a full-blown seizure, just two weeks shy of my 64th birthday. It was my first, and so far only, seizure, and no cause has yet been found. Most of the memories are still quite intense, although faded just a little.

We were on the first day of a family vacation, visiting our son who lived in Los Angeles, and traveling with one of our daughters and three grandkids. We checked out the handprints of the rich and famous and then went across the street to a crowded gift shop to pick up some camera supplies. I was immediately bothered by the flashing lights (strobe maybe??) and within seconds felt the need to get outside. On my way, I found that any object I looked at would break apart and/or jump to some other place in my field of vision. Nothing stayed where it should. It was creepy, but not nearly as creepy as when I started to feel both eyes roll back in my head. Somehow I made it outside and leaned against the building. That's all I remember until the EMT was gently questioning me before moving me into the ambulance. Some kind stranger must have helped me because I had fallen to the sidewalk and ended up with no bruises at all - just a very sore, bloody tongue.

I received excellent care at the nearest hospital and almost immediately found myself thinking about all the kids and adults I have known over the years who struggle with neurological issues. As soon as things started going whacky for me, I remember thinking, "This must be what the kids feel - how scary!" And then when I was released from the ER and told to avoid 'over-stimulation'---- I found myself closing my eyes as tightly as possible and covering my ears when we were in noisy places or there were bright lights or lots of color, etc. and then feeling very frustrated that it's really impossible to shut the world out, even though you feel a very strong need to do so. Also there is the feeling that your brain can play nasty tricks on you at any time, and you really have no control over any of it. Naturally, my thoughts then went to how I might feel if someone decided to put in place some sort of behavior mod program to deal with my anti-social behaviors - Now, that would really tick me off! As for the 'fun' things removed from my life - I recognized right away that going to crowded fun places had to be looked at completely differently. For a very long time afterward I immediately looked for a quiet area where I could feel 'safe' everywhere I went. This of course made me think of the kids we call 'runners' - they too are probably just trying to escape situations their nervous systems can't handle.

I have continued to receive excellent care back at home, and feel very fortunate that so far it seems to be an isolated event in my life. I do believe things happen for a reason. Maybe I needed to take better physical care of myself, and maybe I had a few more lessons to learn about the many kids who have been a part of my life. I certainly have a new appreciation for what they are dealing with - ALL THE TIME! How frustrating it must be to never know what your body is going to do, or what is going to set it off. How frustrating to be unable to enjoy the many activities that others do. And how frustrating it must be when others don't understand. They truly deserve not just our understanding, but our respect and admiration.

Friday, March 20, 2009

Special Education in the Early Years

During my coursework to become a special educator, I spent time in regular schools, where the special ed. classes were usually located at the end of a hallway, separated from the rest of the school both physically and figuratively. There were really only two groups of spec. ed. students at that time: "Educable" or "Trainable" mentally retarded. The first group received what is best described as a watered-down version of the regular curriculum and little or no opportunities to mingle with their more typically developing peers. The latter group (TMR) were believed to be "trainable" at best and thus were presented with a school day that focused on teaching them functional life skills and managing their various behavioral problems. Even as I type this, it pains me to put all of this into words - but I am simply trying to describe things as they existed in those days. I have heard elaborate theories about how we all do what we can with what we know and try to do the best we can with what is known at the time. I guess this is a good example of that theory.

I also was required to spend time in our local institution for children who fell below the cut-off point for TMR, or perhaps had serious medical or behavioral issues that made the level of care needed prohibitive for a typical family in their own home. The truth is that most parents of kids with more severe disabilities were strongly urged to place their young children in such an institution as early as possible. It was seen as the best thing for everyone involved --- the child would be cared for and the rest of the family could have a "normal" life at home. Many of the parents I knew in those early years told me their family doctors had recommended (very sincerely) that they not risk getting "too attached" to a child with disabilities; the assumption being that they wouldn't be with them for long.

In the institution where I spent most of my volunteer hours, I remember stark visions of a large room filled with metal cribs, and of course in each of those cribs a child lying helplessly and usually quite passively. In yet another huge room, there were all the kids with Down syndrome: linoleum floor, plastic furniture, and virtually noting in the way of stimulation (no TV, toys, books, or anything else!) The only ones who received any type of instruction were a few kids who had hydrocephalus and were transported very carefully in a sort of wagon to the classroom for maybe an hour of "school" each day. All children were fed, bathed, changed as needed, and from time to time given a small dose of staff attention - if an occasional compassionate staff member found time in their busy schedule.

There was at the time yet a third group of children with disabilities in all of our communities - those who lived at home, lovingly cared for by their parents but seldom seen even by their immediate neighbors. There were no day programs for them unless individual parents worked together to arrange and fund such a program - usually beyond the ability of families already stressed to the maximum by the impact of the child on the family - both emotionally and financially.

The term "learning disability" was not yet in use, and I am quite sure I had never heard the term "autism." This was the mid- to late- 1960's in Wisconsin, and I would assume across most of the U.S.

Tuesday, March 17, 2009

Those crazy coincidences

I had no intention of going to college. My dad had died when I was ten, my mother worked almost full-time and we were just barely getting by. Though college expenses were infinitely less back then in the 60's, we still had no money to send me - or my three younger siblings - to college. But the teachers in my high school were concerned. They kept telling me I was "smart" and had to do something with my life. One thought I should become a nuclear physicist, another suggested teaching gifted children. What they didn't know was that I was really good at memorizing facts and taking tests, but didn't really have any true understanding of the advanced math or science classes I was taking. And while I had played at being a teacher for as long as I could remember, "gifted" education had no real appeal at that time.

And then a very caring and wealthy relative stepped in and promised me a scholarship through the company he owned. Off I went - but very unsure at the time what it was I was studying to be. I took one education course, but found it extremely boring - and not at all challenging. The math and science courses I tried at the college level, on the other hand, were extremely challenging, but still of little interest or meaning to me.

I was sitting in a class called "Introduction to Mental Retardation" in my junior year, when the professor announced that a brand new program was starting up - to train teachers of the "mentally retarded." Funds were available immediately to anyone who was interested. In all honesty, it was the funds that interested me a whole lot more than the field, but I decided to give it a try - and the rest is history. I still disliked all the basic education courses, but found the field of disabilities totally fascinating. I earned my M.S. degree in what was called at the time "Behavioral Disabilities" and found myself one of only three fully certified special education teachers in the state.

Each of us could have our pick of where to teach, and at whatever level appealed to us. I had married and had a baby by that time, so I chose a school close to where we lived, and started at the elementary level, feeling most comfortable with young children.

That first class will always be very special to me. They taught me so much, ever so patiently, and I have been learning from my students ever since.

Saturday, March 14, 2009

Getting started

It doesn't really matter what the task is, the hardest part (at least for me!) is getting started. So here I go - I am enterting the 21st Century and starting the blog I have had in my head for many years now. My goal is to write at least once a week. Some topics will be long and reflective, others short and informative, maybe even a few humorous ones here and there. Most of all, it will be combination of my desire to help others learn from my mistakes, and my need to put thoughts into written form before I forget what it was I wanted to say. Topics will vary, but I can just about guarantee that most of what I write will have something to do with kids. That is what my waking life has been all about - and those few dreams from the time spent asleep I remember from the time spent asleep invariably have something to do with kids.

I welcome your feedback, and hope to improve the nature of the blog itself as I learn more about what this whole process is all about and how it can be used.

Welcome to my world! It's good to have you here sharing this space with me.