Wednesday, December 21, 2011

What to do in the Meantime

Suppose you have become interested in Facilitated Communication, and are considering trying it with someone you know and care about. You've read a story or two, watched a video, read a book, or maybe even met a person who uses this method to communicate.

You probably find yourself a little skeptical and very unsure of where to start - or even whether to do so. You have probably heard that training is required to become a facilitator and that may require a trip to Syracuse, NY or Whittier, CA - something that seems entirely out of the question. It is not likely anyone close by is offering such training, and even if they are it might be several months in the future. What to do in the meantime?

Let me suggest the following, keeping in mind that not all of these suggestions may be feasible in your particular situation. Feel free to adapt the ideas to fit your circumstances.

(1) Presume competence. This is not an original idea of mine. It is the unofficial motto of almost all the autism conferences I have attended over the past ten years or more. Dismiss all entrenched ideas that people with autism are cognitively impaired (mentally retarded). I give you permission to look for glimmers of intelligence and then believe them when you see them. Regardless of any professional evaluations or test scores, start to see the person as capable of learning. Based on my many years of experience, I can assure you that all of these people are learning all the time - with or without the assistance and support of teachers. Borrowing yet another common phrase, this is always the "least dangerous assumption" when we meet a new person who is unable to speak, or limited in their abilities to function or communicate.

(2) Watch carefully how you speak and what you say. This follows naturally from the presumption of competence. It follows, but that doesn't mean it happens automatically. This will require some self-reflection and the changing of some long-standing habits. It happens on all levels; we might as well admit it. We don't always remember to speak at an age-appropriate level when we are talking to folks with "differences." (Perfect example: I typed "disabilities" and then decided there was a much better word to use). I have been working on this personally for about 20 years now, and still need to remind myself. We don't always remember to include a non-speaking person in the conversation. We talk about them in their presence as if they were invisible. We talk to caregivers or parents rather than to the persons themselves. And what we have to say is not always pleasant for them to hear.

(3) Look for ways to let the person know you believe in them and want to know more about what they are thinking. Say those words, or anything like those words that feels comfortable to you and fits the situation. Try talking aloud about what you have read or seen about the amazing people who are typing to communicate and then add that it would be wonderful to know what the person you care about might have to say if/when they learn to type. "WOW! Sue Rubin's story is amazing. I can't wait to hear all YOU have to say!" "I just know you are full of great ideas, and probably lots of questions too. Some day we'll find a way to get them all out." Watching one of the videos available or reading aloud from one of the books - the ones that tell of the many success stories of those who have learned to type - can be very effective, in so many ways! Do this over and over again, if possible.

(4) Never miss a chance to give the person meaningful choices. We find that so many of these young people have had people making choices for them most of their lives, so that even teens and adults - when they start to communicate - aren't sure what THEY really like. This might apply to food preferences, what clothes to wear, learning or leisure activities, what color they want their room painted, or just about any aspect of their lives. You don't need to wait for them to start typing; use whatever means of interaction is already in place to give choices frequently throughout the course of an ordinary day. Involve them in the decision-making process at every possible opportunity.

(5) If it's not already established, work on a reliable way for the person to give a yes/no answer to questions. A nod, or thumbs up, pointing to a smiley face, or maybe giving a smile, can all mean "yes." The trick is to be sure the answer is reliable and meaningful. Lots of these folks seem to be programmed to please the adults around them (yes, even those whose actions might seem totally meant to drive us to frustration much of the time!). They really DO want to please us, and they tend to give answers they think we want to hear. We want to undo that, and help them get in touch with their own feelings and preferences. This might seem overly simple and for some who think their kids are already controlling the lives of all family members by their behavior, it might seem totally unnecessary as a point of discussion. Again, my experience is that most kids need our help to learn not only how to ask for what they need, but more basically how to identify what they need or want.

(6) Help other people who are significant in the person's life to make these same changes. If you are lucky, others will learn from your example. Or maybe you will have to do some teaching, gently prodding them and moving them along on the continuum toward complete acceptance of this person as someone who is to be seen as capable, competent, compassionate - and worthy of our respect.

(7) And, if you dare, try holding their hand firmly, pull back - also firmly, at first - and just see if that helps them point or spell to answer a basic question in a meaningful way.

The advice is free, so I can offer a money-back guarantee that you will see results if you are able to make the changes in (1) through (6) above. Number 7 is a bonus for those who feel ready.

Have fun. Stay positive. Let me know how I can help!

Saturday, December 10, 2011

The Reality of Abuse

In May, 2010, I included the following paragraph in a blog posting about some of the reasons for the strong resistance to the use of Facilitated Communication:

"In some cases where a nonverbal child is finally given an effective means of communication we find that what they really want to tell us is not at all pleasant. Some children, and adults, when introduced to FC, started reporting instances of mistreatment or abuse. Without going into great detail about all the chaos this has caused, I ask you to consider the reality. We know many kids are abused, we know many reports of abuse turn out to be untrue, we know these situations are always complex, and always unpleasant. Add to that the sad reality that a child who is unable to speak, who likely presents serious challenges behaviorally, and who has the need for many different adult caretakers in their lifetime, is a particularly vulnerable target for a potential abuser. It's a sure recipe for possible abuse. And unfortunately, it is all too easy to make sure we never have to deal with such a situation - if we don't allow the use of FC."

Reports of child abuse - in its many forms - have been in the news a lot recently, but it's still a subject we really do not like to talk, or think, about. It happens, we all know that, and if we let ourselves think a little more, we would probably agree it happens far more often than we hear about.

In my early, heady days with Facilitated Communication, the subject didn't come up. I could easily tell people that not one single child had reported any sort of abuse to me in our many fun and exciting conversations. The closest we came would have to be those kids who reported sadly that someone important in their life failed to accept what I was trying to tell them and still treated them as if they were "retarded." (Their term invariably; I no longer used that label). It was frustrating, sometimes leading to angry outbursts, and of course something we worked diligently to change. But it wasn't really anything I would call "abuse."

And then, one day it happened. A child who meant a lot to me, one who trusted me to be there when needed, inserted a comment in the middle of a conversation we were having that sent up all sort of red flags. I was stunned and at a loss as to what to do.

This was the first, but it wasn't the last, and I think it's important to protect everyone's privacy in this matter, so I will avoid giving details. Suffice it to say, going forward with information like this is NOT easy. The very idea that a facilitator would even think of making up something like this is impossible for me to comprehend. Starting with school staff (teachers, aides) and moving up the line to social workers, psychologists, administrators, police officers, lawyers or judges -- no one knew what to do with information that was revealed in this way. Everyone suffered, and of course this includes most of all the children, their families, and anyone being accused of abuse of any kind.

Many, many mistakes were made in those early days, but I personally was lucky. The people I dealt with were largely supportive and helpful, moving forward cautiously and showing great respect for the various children involved. Were the cases resolved adequately? I wish I could give a strong affirmative answer to that; but we simply did not have enough accurate information to be absolutely sure of some of the situations. We may have failed some kids and their families. In some other cases with which I am familiar major disruptions to families and lives occurred. I have no idea what the truth is in those cases, except to know much pain was caused.

I continue to think about the larger picture. If kids are being abused, they deserve our help to put an immediate end to the situation and to help them deal with the trauma, not just in the present but for the long-term. If a person is accused of abuse, they have the right of presumed innocence until/unless proven guilty. At the same time, schools, agencies, institutions, and all involved in the criminal or legal system or social services need intense education and support so that cases - when reported by any individual and by any means - are handled properly.

What we cannot do is ignore a child's cry for help. We cannot take away their means of communication - or deny them access in the first place - because we don't want to hear what they might have to say. And if any type of abuse is reported by any child at any time in their lives and by any means of communication, the trusted people in their lives cannot simply push aside what they are trying to tell us. We owe them a fair and complete investigation, no matter how painful this might be.

Sunday, November 13, 2011

Using rewards: good or not so good?

I have been hearing and reading a lot lately about the use of rewards with children. I rejoice that we have - for the most part - learned to focus on the positive when working with young kids, and so there's much less punishing going on these days. Even the use of "time-out" has been softened, so that a child is encouraged to spend some time by themselves until they feel ready to rejoin their family or classmates. I think this reflects some understanding on our part (the adults in the situation) that kids might feel overwhelmed at times, and if we encourage them to take a break, what we now are calling "meltdowns" might be avoided.

All of this seems to be progress in a better direction than what I first encountered as a young teacher or a young parent. I was trained to use rewards (mostly edible in nature) and punishment (verbal reprimands or, if needed, a much harsher style of time-out that is now referred to as "seclusion" or even physical restraint). For those who were a little older, or better able to understand the process, we offered stickers or maybe money for good behavior and then loss of money or privileges when behavior was not acceptable. It was heavily based on the work of B.F. Skinner and tended to be quite effective for our purposes - to get kids to conform to the behavioral standards of the home or school environment.

The current discussion seems to focus on what happens to kids who learn to behave or perform in order to earn the approval of the adults in their lives. Punishment is gone, for the most part, but now we have a generation of "praise junkies" competing for good grades from their teachers and "Good job!" or "Way to go!" from their parents, coaches and other adults in their lives.

One great lesson I learned from the kids in my life who are on the autism spectrum is that they really DO want to please the adults in their lives and they really do NOT want to be praised when they accomplish a behavior or task that should be second-nature to them, but is not. In fact, often what we are asking them to do, and then praising them for when it is accomplished, is really very hard for them to do, and is actually learned by their non-disabled peers at a much earlier age, maybe even with little or no effort. Our praise may just call further attention to the fact that they are different, that they are far behind in their skill development, that they don't quite fit in. They are all too aware of this, and reminders may not be welcome.

Another lesson learned - from my wise and wonderful husband, many years ago - was the fine art of praising a child in more subtle ways. A highly effective one is talking to other adults, while the child is within hearing range, to tell how proud we are of the person they are becoming, the things they are learning, the skills they have acquired. For the kids with various special education needs and labels, the perfect time for this was the IEP meeting - and it worked best if the child could be present so they could hear me saying positive things about them.

The early days of IEP meetings, or parent/teacher conferences, seemed to be deficit-based. We'd sit around a big table and talk about all the things this particular child was unable to do and try to devise a plan to "fix" whatever deficits seemed most urgent at the time. (Mea culpa, yes. I DID that - and I am SO sorry!) Obviously, the parents were acutely aware of their child's lagging development; they certainly didn't need me reminding them!

But maybe we've overdone the positive approach. Maybe we give too much praise, talk too much about the positive, overlook some negatives that really do need attention. Or maybe we need to seek better ways of addressing the whole issue.

Here's one more lesson learned: When I am trying to help one of my grandchildren through a difficult time, or when I am dealing with a person with autism who happens to be nonverbal and is presenting us with some challenging behaviors, it works best if I can remain calm, and - when the time is right - find some way to involve them in figuring out what is wrong and how we can work together to make it better. The right time is usually not in the middle of a meltdown, and not when there is an audience of any kind. But if we can get away from other people and distractions, in a quiet moment when I can give them my undivided attention, and then really listen to what they have to say (or type if that's their way of communicating) --- often we can bring about changes that make a real difference.

I really do think most kids want to please us. They want us to be sincere in what we say to them - including especially any praise we might offer. And they want to be respected, which we can best show by trying to take their perspective and by involving them in the learning process.

Thursday, September 29, 2011

Guest Blog - More Thoughts from Roy

My friend Roy has a special interest in helping more people become aware of the advantages of typing to communicate. He has been giving presentations when invited to do so, but those opportunities don't come nearly often enough. I am hoping it will help to give him a platform here.

from Roy - in his own words:

JUST KNOW MY LIFE CHANGED MORE THAN I COULD HAVE DREAMED WHEN I HAD THE OPPORTUNITY TO MAKE MY THOUGHTS KNOWN.

LET YOUR MIND BE OPEN TO LOTS OF NEW POSSIBILITIES. LOOK INTO YOUR HEART AND FEEL THE LOVE WE ALL NEED.

IF YOU HAVE THE DESIRE IT PROBABLY WILL WORK. LOOK INTO YOUR HEART AND FREE YOUR HEART UP SO THAT IT IS POSSIBLE TO BELIEVE. USING FC IS THE BEST THING THAT EVER HAPPENED IN MY LIFE. MORE PEOPLE NEED TO TRY THIS SO KIDS MIGHT HAVE HOPE FOR THEIR FUTURE. KEEP TRYING TO USE FC. DON’T GIVE UP. YOUR CHILD NEEDS A VOICE.

I MIGHT NOT LOOK LIKE I KNOW MUCH BUT MY MIND IS GOOD AND MY HEART IS FULL OF LOVE FOR EVERY LIVING THING.

I can't say it any better than this.

Monday, July 25, 2011

Exposure Anxiety, Part Two

I have written earlier about the tendency of people with autism to make use of various repetitive behaviors in ways that at times may drive those around them to great frustration. (See the posting from Feb. 18, 2010).

Many of the young people I have known over the years have some limited use of oral language, and most of those who can speak exhibit what is known as echolalia when they do talk. This tends to be words or phrases they have heard in the home or school setting, and they may repeat them over and over again, seemingly in random, meaningless fashion. But more than once I have had a student repeat a phrase such as "Bad boy!" - a reminder to all of us that how we talk to children DOES make a lasting impression.

Beloved books, TV shows or movies may lead to what is often called "TV talk" and many of these youngsters develop quite a repertoire of familiar phrases that provide comfort in difficult times - or may, if we are really listening, serve a communicative purpose.

I recently traveled to Canada for a long weekend of working on typing with several families there. One young man was heard in the hallway before our first session repeating over and over again, "I don't want to come out of the egg!" We definitely struggled during our time together as his loving family asked questions, trying to learn more about his personal preferences and inner thoughts. In particular they wanted to know what might be causing him to bite his own hand repeatedly. We asked about a possible toothache, or jaw pain, or stomach distress - and were getting nowhere, until he held my hand and typed: PLEASE ASK ABOUT PAIN IN MY HEART. And with that major crack in his resistance, he came out of the egg long enough to tell his family he loves them, is frustrated by his inability to talk, and wishes everyone would see his true intelligence.

I also spent many hours at the home of a young gal who experiences so much anxiety that she rarely leaves her home. We typed in short sessions, when things were comfortable enough for her to allow me into her personal space. In fact, just about everything her family does is carefully choreographed according to her comfort level, 24 hours a day, day in and day out. It's a matter of survival - and many families of those on the autism spectrum share this style of doing whatever it takes to maintain some semblance of stability in their homes.

When it came time for me to leave, this young lady covered her head with a blanket and shooed me away with an extended hand. What I heard her say was, "Bye-bye, little bird. It's time for you to fly. There's no room for you in the nest. Bye-bye." I took the not-so-subtle hint and left with tears in my eyes. Yes, it was time for me to fly back home, and this was her way of letting me go. But, as I thought about it some more on my flight home, I think there was even more of a message in her spoken words. She knows I live far away and may not visit again for several years. She knows it's now up to her and her family to keep the communication going. It is time for her to leave the comfort of my support, time to fly on her own. And I think she might be ready!

I didn't recognize either of these phrases - coming out of the egg, or leaving the nest, and I didn't ask the families for an explanation - didn't want to break into the interactions I was having at the time with these amazing kids of theirs! But I am guessing the families have heard these words before, and could tell us just what book or movie or TV show they come from. Maybe these are common, repetitive phrases they've heard over and over again for many years. Maybe the words have never seemed to have much meaning in the way they were used.

I don't think I am overreaching to think they carried a lot of meaning in what these FC users wanted me to know.

Sunday, July 10, 2011

Exposure Anxiety

I see it all the time - in so many different ways with so many different individuals. It can be totally paralyzing, at worst, and a major obstacle to overcome, at best. Donna Williams has devoted an entire book to "exposure anxiety" as described here:

Exposure Anxiety: The Invisible Cage

Drawing on an 'Indirectly-Confrontational' approach, this book explores the social-emotional self protection response of Exposure Anxiety and the strategies to work with these. Exposure Anxiety is the Invisible Cage, an involuntary response that challenges the person to either side with it and identify self with their own avoidance, diversion and retaliation responses or live with the frustration and despair of being aware of self but buried alive.

In my attempts to help young people who are nonverbal find their voices and learn an effective way to communicate what is on their minds, exposure anxiety is often what stands in the way of our mutual success. It happens for a variety of reasons: maybe the individual is simply living with a huge amount of anxiety over anything that is new or different; often there is a reluctance to upset the family dynamic; or maybe there is an underlying fear that if too much is revealed of their intelligence and capabilities more will be expected of them.

It makes so much sense to me as a relative outsider in these situations. I usually come into a child's life well after the preschool years. By that time, they and their families have found a way of coping with daily life that may be far from what would be considered "typical" or "normal" (if there is such a thing when it comes to family life!) but it works for them. All kids - whether they can speak or not - find ways to make sure their basic needs and wants get met. They also find ways to make their lives generally bearable and maybe even enjoyable. For those who don't talk, it's usually their behavior that leads to desired outcomes for them - and every single family learns to accommodate, adapt and modify to keep the peace, at least to some mild/moderate level. (Educators might appreciate my use of common school terminology here to describe the home situation - it's done with tongue firmly placed in cheek. I may be retired, but the lingo is still alive and well).

Enter someone like me, bearing a letter board and all sorts of positive words about the exciting possibilities that lie ahead if one just gives communication a try. Only on a few very rare occasions have I had the sheer joy of being met with enthusiasm by a person eager to let me hold their hand and start them typing. Much more typical is a child who runs and cannot be coaxed back for at least a dozen visits, or a child who resorts to pinching, hitting, biting, hair-pulling, or screaming to let all of us know just what they think about my ideas. I think I have been through it all - and have the scars to prove it.

But the blessing is that I have also experienced the success that comes with persistence and working through even the toughest of situations. When I have found myself in a physical struggle with a small child - most likely positioned in my lap on the floor with my legs over theirs, one arm pinning down one side of their body, my chin tucked and on guard for head-butting, and my facilitator's arm placed on their preferred hand, and I ask if what we are seeing in their body language means they need a break or want to quit --- and they extend a finger to spell out, "NO I WANT TO KEEP TYPING" I know my efforts are all worthwhile.

I am convinced that revealing our inner selves is not easy for even the most outgoing and confident among us. Those who are naturally shy or more introverted may find it excruciatingly difficult to share their innermost thoughts and feelings. And sorry guys, but I do see most males of the species tending to avoid discussions that get really personal. For anyone on the autism spectrum, for anyone who struggles to communicate for whatever reason, we can reasonably expect that identifying and then sharing inner thoughts is going to present quite a challenge!

Most kids who develop along some sort of normal pathway do find it rewarding to show others what they know or what they can do. "Watch this, Mom" can be heard at every public playground or pool all day long. "Watch me, Grandma" can wear me out some days, as much as I love every single one of my grandkids. But something changes when a child is not able to keep up with their siblings or peers. Slowly, or not so slowly, they sense they are not only different but somehow inadequate and they withdraw from the competition. They shut down. They find other ways to entertain themselves, often the solitary, repetitive, even obsessive interests and activities we commonly associate with autism. (I have seen this happen to children with Down syndrome, cerebral palsy, and a wide variety of other developmental disabilities - and many are now receiving the dual diagnosis of autism, often because they exhibit similar behaviors).

Once firmly entrenched in this way of coping, it's understandable that most kids would need a whole lot of encouragement (along with patient persistence) to help them see any value in opening themselves up to possible failure, ridicule, or additional pressure to perform if they reveal in any way that they might actually be "smart!"

My best advice in these situations is to create ways that communication and interaction will lead to better things in life - small, immediate things like meals, snacks, outings, or toys they like and bigger things like changes in the home, school or community environment that will make life more agreeable to them. Over and over again, they need to hear that they are loved just as they are and that the people who care about them want what is best for them. No one is trying to "fix" them (or cure!) because they are fine just the way they are. But everyone wants them to be happy, and if we can get meaningful communication going, we can stop all the guessing and get down to the real business at hand - creating a life that makes them feel good about themselves and makes them happy.

And they need to hear that the people who mean the most to them KNOW they have a lot to say and would LOVE to know what that might be, even if it means we have to change the way we do things around here. Tell us what you want/need so we can do just that, because we really, truly want what is best for YOU!

Friday, April 22, 2011

Out With the Old

Leo Kanner has been credited with giving autism its name, back in 1943, after closely observing a small group of boys who exhibited unusual traits such as social withdrawal and problems with communication. He saw this as a condition or disorder separate from either an emotional disturbance or a serious learning disability. In the intervening years, much misunderstanding has muddied the waters of how we view what we call autism.

Some common views - all of them subject to many changes over the years:

(1) Poor parenting causes autism. If you are unfamiliar with the history of what came to be called "refrigerator mothers" I urge you to find the time to watch the video of the same name presented by PBS. This unfortunate (and unforgivable!) idea was still present when I first entered the field of special education in the mid 1960's. Thanks to Freudian thinking and "experts" such as Bruno Bettleheim, many children were removed from their homes and sent to residential facilities, their parents encouraged to "get on with" their lives.

While I can accept the possibility that poor parenting might cause the behavioral symptoms associated with autism to be even more challenging, it is far beyond my comprehension how a parent could endure the pain of being told it was all their fault that their child had this very puzzling, very challenging condition!


(2) Autism is a psychological disorder. Many of the children with autism who entered the public school system in those early years were given the label of "emotionally disturbed." Looking for a positive in this, at least that did NOT indicate a lack of ability to learn. But it did lead almost invariably to a program that was highly behavioral in nature, and if the usual techniques associated with behavior modification weren't working (they seldom did), the typical next step was a visit to the child psychiatrist to begin a regimen of psychiatric medications. For the most part, this involved the administration of drugs that were developed for, and tested with, adults with schizophrenia. It was all very new, and the process was hit or miss at best, trying various dosages and/or combinations of drugs until something "worked" - and then starting over again when that particular drug or drug combo wore off. All of this with kids who were unable to communicate what they were experiencing in their bodies.

(3) Children with autism are cognitively disabled, mentally retarded, or unable to learn. This is just plain WRONG, WRONG, WRONG! Unfortunately, you may still read in some places that up to 75% of those with autism are also cognitively delayed or disabled. My experience tells me differently. I will allow that they might test in a lower range, but that is a problem with our inadequate ways of testing and NOT in their ways of learning. If a person is struggling to communicate, and in addition dealing with severe neuro-motor issues, they are not going to do well on any of the standard assessment tools we have in current usage. I am ready to go way out on a limb and suggest the possibility that most individuals with autism are in fact highly intelligent - even those unable to speak - and we'd be much better off if we treated them in this way. Combining two of my favorite mottoes, we should always go with the "least dangerous assumption" and "presume competence!"

(4) It's all about behavior. True, we still diagnose autism based on outward behavior, since there is not a simple blood test that will help us out. We look for social withdrawal, difficulty with transitions, problems with communication, lack of eye contact, repetitive behaviors, poor play skills, and so on. I am OK with that, at least till something better comes along. But we err when we focus too much on fixing that behavior rather than trying to figure out just why it might be happening. Even more severe issues such as tantrums, meltdowns, aggression or self-injurious behaviors should be considered in light of what the individual might be trying to tell us. Possible medical problems, such as gastro-intestinal inflammation, any kind of pain, or sensory overload are all potential explanations for troubling behaviors. All kids can be manipulative, but when we have a child who is unable to let us know what they are thinking or how they are feeling, it is wise to give lots of thought to what they might be trying to tell us when they "act out." For what it's worth, the kids with autism I have known are far less likely to be trying to manipulate the adults in their lives than those who are not affected by autism (i.e., my awesome grandkids, who have been known to exhibit some rather challenging behavior themselves!)

(5) We must find the cure. There is no cure. Lots of research has focused on this. Many parents plead for a cure. And I am guessing most of society would agree that it would be wonderful if autism could be eradicted. But a growing number of people with autism are telling us that this is an offensive thought to them. They are who they are, autism is a significant part of that, and they don't appreciate it that we (the NT's of the world) are working so hard to get rid of this thing we call autism that makes them the unique and amazing people they are. When we hear of great scientists, artists, inventors, thinkers, and computer gurus who may well be on the autism spectrum, we should also think of all the world would be missing without their contributions. Suggestion: Read one of Temple Grandin's many outstanding books, or watch the HBO movie, "Temple Grandin."

I really don't think there is a cure, but I do believe many individuals have learned to live with their autism, and many more will do so in the future if we can offer them a supportive community that is both understanding and accepting of their differences. I have stated elsewhere that early intervention is highly effective - and critical. The combination of meaningful treatment options at every stage of development and proper supports in their lives can lead to lives that are happy and fulfilling.

Monday, April 4, 2011

Autism - My Early Education

I chose special education as a career originally because there was a tempting chunk of financial aid available. The University was in the process of starting its first program to train teachers of the "mentally retarded" and I thought it might be worth a try. I had been going back and forth between a major in psychology (which I loved) and elementary education (which - as I had heard from just about everyone - would give me job security for the rest of my life). I was in my junior year and running out of money. Maybe, just maybe, this would work.

As it turned out, I truly enjoyed all my classes in special education and found myself saying, many years later, that "I really wouldn't need to get paid for what I do!" I loved it that much!

Along the path of my personal education, I was blessed with a variety of experiences and some wonderful mentors. Thinking back to my college courses, I am quite sure the term "autism" was never even introduced. By the time I was hired for my very first teaching job, we were only using two labels for kids placed in special education programs in the public schools: educable mentally retarded (EMR) or trainable (TMR). My first group of eight students probably included one or more who would have been more accurately described as having a learning disability, but I had still had not met a person with autism.

I took a few years off when my own children were young and then drifted into a part-time teaching position at a privately-run residential facility for kids with "infantile autism" or "childhood schizophrenia." Let the real education begin! Those were the days of blaming the parents, and of course especially the mother, so we had little or no contact with family members. We had two main treatment options: medications such as Haldol or Thorazine and behavior modification. I may have been hired as a teacher, but what we provided in the way of "education" was very limited because the kids presented us with such a wide variety of very challenging behaviors. How could we teach them if we couldn't even keep them in the classroom? And what should we teach anyhow? Their needs seemed so great! I found the kids charming and lovable, but felt terribly inadequate as their "teacher." What I didn't realize at the time was how much they were teaching me. I know it now and will be eternally grateful to them for their patience and persistence. I don't think I was a quick study.

That particular experience led me to a job in a segregated school for kids with special educational needs, where they were struggling to figure out how to help a young girl with severe autism - it was a county-wide school and she was the only one in the county with that label and unlike any student this particular school had encountered in its long history.

"Carla" was an excellent teacher. She and I spent the whole day together, including lunch and bathroom visits. She came to me from a temporary placement in a state institution, where I went for further training in the fine art of behavior modification. I also worked closely with her family, watching their interactions and learning from them what worked and what didn't. As an example of the latter, let me describe one of our walks in the hall.

I was taught (by the B-mod folks) to praise Carla for any appropriate behavior she exhibited (i.e. when she wasn't screaming, pinching, pulling my hair or head-butting me), so I might say, "Nice walking, Carla!" as we walked, and Carla would hear me and promptly sit on the floor. Now, because she was no longer doing what I had asked of her, I was to give her a 30-second "time-out." We were in the hall, no chair was available, so the time-out would involve 30 seconds of sitting on the floor (which of course she was already doing - how convenient!) I would then say, "Time out, Carla, no sitting in the hall." Do you see where this is going? I'd give her 30 seconds of sitting (in spite of the incongruity of it all) and then say, "Time out is over, Carla. Stand up." If she did, we could move on - at least until I praised her for walking and the whole process started over again. OR, if she didn't get up, we were headed into yet another time-out sitting there on the floor because she had refused to get up.

So many, many things went right for me as Carla worked patiently to teach me about autism. First, I quickly recognized that something was wrong. Then, I realized that nothing was ever going to go "right" unless Carla and I could come to some sort of truce and develop a relationship. And finally, Carla's family and my bewildered administrators were willing to trust my judgment and let me try to do things another way.

But, as I look back on that particular stage of my learning, I realize I knew very little. I had many glimmers of potential intelligence in Carla, but didn't dare go too far in that direction. After all, there was so little she could actually do and absolutely no consistency in her day-to-day performance levels. I was just starting to hear and read about the many sensory issues connected to autism, but had not yet put that information together enough to consider it as a possible explanation for all the screaming and other "behaviors" we were facing regularly.

What I had learned was significant, however. I knew beyond a doubt that it was wrong to blame Carla's parents in any way - they were very loving and supportive. They deserved our respect, not our blame! And I knew that the techniques of behavior modification were not for me. I was going to have to find a different route, and although I didn't realize it at the time, I would probably have to find it on my own because there really was nothing else out there.

Ah, but I had many wonderful teachers yet to come. I wasn't alone at all!

Friday, April 1, 2011

Missing in Action

It's officially Autism Awareness Month and I am determined to blog more regularly, and stick to the topic at hand. But first, I must explain my absence - from this blog and from just about every other important task that I have neglected for about six weeks now!

Living in Madison, Wisconsin (since 2004) has been a very positive experience, full of stimulating, exciting opportunities. And then sometimes it gets even more so. I will try to keep this as concise and nonpolitical as I can. It won't be easy.

Our newly elected governor, Scott Walker, has launched some very controversial budget proposals in an effort to regain some fiscal control. Starting back on Monday, February 14, a group of teaching assistants from the University have been doing everything within their power to call attention to some of the possible problems associated with these proposals. On that particular day, there was a march up State Street, from campus to Capitol, to deliver piles of valentines to the governor, saying "We (HEART) Governor Walker." They were trying to get his attention in a "nice" way. And I am trying so hard here to be "nice" myself - How am I doing?

Things moved rapidly from there and very soon the entire Capitol building had been taken over by the people of the state, drumming, chanting, singing, and shouting to be heard. A very brave group of 14 Democratic senators fled the state and stayed away long enough for the rest of us to catch up on what was happening and learn just what was included in the budget "repair" bill being proposed. Police and fire department members showed their support. Farmers drove their tractors to Madison and then around the Capitol square. Diverse groups of union members (and those who support them), disability advocates, families from all over the state and people of all ages have banded together to make a statement with regard to the drastic cuts facing our state.

I live just six short blocks (but it IS uphill part of the way!) from the Capitol and being the very curious person I have always been - plus the political junkie I have become in my retirement - I have been a regular visitor, checking out the action several times each week. I have been there among tens of thousands of demonstrators, and was there early one morning when only a few people were silently meditating on the floor of the rotunda. I have been there with two of my grandkids. I have been there when the doors were open to all, when the doors were locked to everyone, and most recently when one or two doors are open to the public and everyone is required to go through a metal detector, empty pockets, even get "wanded" if there's any question about what's setting off the alarms.

I will be heading there soon to join a dedicated group of people who are singing daily in the rotunda - an inspiring repertoire of union songs, protest songs (from way back in the 60's. I love it!!)and specially adapted lyrics to fit the current situation. Because it is spring, the demonstrators are now joined regularly by school groups on field trips and the common chant of "This is what democracy looks like" seems particularly appropriate as they visit to see how state government operates. There is no more drumming, but people use their car keys as accompaniment. Signs can no longer be taped to the walls, but they can be held in hands, propped against the pillars, or spread out on the floor for observers on upper levels to clearly see. The earlier food stations, information station, family care, first aid, sleeping bags, etc have all been banned - and I must say I miss them. It all added so much to the atmosphere. But the spirit remains, and is as strong as ever.

I will be checking on a man who is on a hunger strike. If I haven't lost track, today is Day #28 for him. He is only drinking water and taking potassium tablets, and says he is prepared to die if that's what it takes to bring this all to a halt. I first noticed him when he was on Day #10, spoke to him briefly one day last week, am following his blog, and cannot get him out of my mind.

In the early days, it was the drumming that stayed with me day and night (and not just when I was actually present at the Capitol - I heard and felt it as I fell asleep at night and when I awoke in the morning). Then it was the singing that stayed with me, and now it's concern for Matt's well-being. As passionate as I have become over the various issues we are dealing with, I don't want him to die. I don't want him to go on with this. And yet, I have the deepest respect and admiration for the courage he is showing and the statement he is making.

Tomorrow - back to Autism!

Tuesday, March 22, 2011

Thank a Teacher

There's been a lot of teacher bashing going on around here lately, and it's moved me to think seriously about those teachers who have touched my life in so many ways.

I always loved school. Playing school was by far my favorite thing to do during my childhood. I don't think I always wanted to BE a teacher, but of course that's how it turned out and I could not have been happier in my chosen profession.

Since I attended Catholic schools from first grade through high school, many of my teachers were nuns - all of them in full nun garb back in the 1950's and 60's. The young sister who was my first grade teacher had a total of over 70 students in a very crowded, but of course well-disciplined, classroom serving both grades one and two. I loved it - managing to pick up everything the older kids were learning as we went along.

It was my sixth grade teacher who inspired me to think I wanted to be a nun myself someday, a plan that lasted no more than a year or two, ending abruptly when boy-craziness took over and I developed one crush after another on boys in my class, boys in the neighborhood, Elvis, the Beatles, and on and on - ah, but that's another story altogether.

In my junior year of high school, Sister Sean was the one who awakened me to a love of literature and writing. She was young for sure and probably very pretty, but we didn't really pay all that much attention to things like that. What I remember most was that she set me free for the rest of my life to question the words and teachings of others. She not only said it was OK to ask questions (even about matters of faith and doctrine!), but it could be dangerous NOT to question.

I really didn't have a lot of questions at the time, and certainly no doubts about anything I was being taught. I swallowed it all, loved it all, and what I was learning was such a part of who I was at that time in my life that I had no inkling of the importance of what that dear nun was doing for me - and probably for many or most of my classmates, and all the others whose lives she touched. The questions came later when I was exposed to thinking that was very different from what I had known in the shelter of my family and parochial schools. But thanks to Sister Sean, I was ready and able to open my mind and learn from others without compromising my personal beliefs or values.

And bless them all for not standing in my way when I decided late in my senior year that I wanted to attend the University of Wisconsin in Madison, known then - and now - for its outstanding educational programs, heavy emphasis on beer drinking, and strong liberal leanings. I was warned that the campus was full of Communists who would try to win me over, but the truth is I was highly motivated to do well academically - which helped in many ways, including the ongoing temptation of all those beer parties!

Among my list of teachers who impacted my life, I must include Mrs. F. in the elementary education program at UW-Madison, who brought me to tears when she called me into her office and berated me for never speaking up in class. I still loved school and learning, but really did NOT like my education classes, and had never, ever been one to speak up in class. I much preferred writing very long term papers with lots of footnotes and a long bibliography, or studying for days to take an exam. I did NOT like courses where participation in class was considered as part of the grade. But she forced me out of my shell, where I might still be hiding if she hadn't intervened at that particular time.

It happened almost by accident that I found myself working toward certification in the area of special education and there I found many teachers who inspired me. This was a brand new area at the time, and I found it both exciting and challenging to learn about all the many ways that kids could be "special" and in need of teachers who really care about them and want them to succeed.

After I had been teaching for some time, I heard a conference presentation on the topic of "Communication as Behavior" given by a highly respected leader in the field, Anne Donnellan, and my professional life took a critical turn. It was as if she gave me the permission I needed to see my students in a different light - limited not so much in their cognitive ability as in their ability to communicate what they know. When I was later introduced to Facilitated Communication through the work of people like Rosemary Crossley, Douglas Biklen, and Marilyn Chadwick, it completed my professional transition, and gave the last ten years of my teaching career the greatest possible satisfaction.

Along the way I was blessed with wonderful mentors, outstanding paraprofessionals, supportive parents and regular education teachers, and administrators who cared enough to learn why I did what I did in my classrooms. One particular student teacher in my classroom went on to earn her Ph.D. in special education and has never stopped encouraging me to share what I have learned about this field with others. I learned from some very hard-working and compassionate school psychologists, speech therapists, and occupational and physical therapists.

Most of all, I learned from the many students who allowed me to become a part of their lives, who put up with the many mistakes I made along the way, and who will be forever in my heart. Reminds me of the line from the musical "The King and I" --- "If you become a teacher, by your pupils you'll be taught." It certainly has been true for me - no one could have taught me better.

Wednesday, January 5, 2011

The Real Mama Grizzlies

All the recent talk about Mama Grizzlies (ala Sarah Palin and others) got me thinking about the most awesome women (and men) I know - the parents of kids with significant "special needs."

I have been involved with this population long enough to remember when the concept of "refrigerator mothers" was commonly accepted, even among the professionals. As with so much of my early teaching years, I feel a profound need to apologize over and over again for all the damage we did with such horribly incorrect ideas. Can any of us imagine how painful it must have been for a young mother struggling to cope with a very challenging child to be told by her doctor that the problem was that she didn't really love her child? Or didn't love him/her enough? And that the only real hope was to send the child away to some institution (usually far from home) and let the "experts" raise them?

Moms - and dads and siblings - today have it considerably better, but their lives are still impacted in ways that most of us can't begin to comprehend. Little or nothing about their daily lives compares to the norm, if there really is such a thing when it comes to family life! School personnel struggle to implement needed accommodations to make a child's time away from home as conducive to learning as possible, but that's peanuts compared to what Mom, Dad and sis/bro Grizzly have been doing for years before school enters the picture. Virtually everything they do at home is an accommodation of one sort or another - sleep schedules (and disruptions, or total absence of sleep!), dietary restrictions or preferences, furniture arrangement, trampolines on the floor or swings suspended from the ceiling, disrupted or non-existent travel or holiday plans . . . it goes on and on. Parents of young kids with autism are told of the critical importance of early intervention and often pay huge sums of money for such services. But it's more than that - looking for therapists, training them, and then opening your home and family to an almost constant stream of outsiders who come to work with the child. It's one of the few things that people in the autism community agree upon - early intervention helps, but at what expense? And what if a particular family just can't manage it?

I recently listened to a panel of moms of kids with autism share some of their more painful memories of the difficulties they have faced in the home, school, community, or place of worship. Some have learned of school practices bordering on abuse, some have moved - often more than once - to find better services for their child. Married couples have lived apart for years so that one could work and the other could live in a school district that might better meet the needs of their child. And of course, many couples could not survive the pressure and stress and found divorce to be the only option. Then there are the effects on siblings. Often overlooked in the chaos that ensues when family life revolves around one particularly needy member, they might withdraw, or act out, or take on more than they can handle in the way of responsiblity - all of which adds to the stress and guilt experienced by the parents.

It doesn't end when a child graduates from high school. In fact, that's probably what's been on the parents' minds from Day One - on those rare occasions when they find time to think! What happens then? And what happens when/if we are no longer here to help?

I worked in the schools, mostly at the elementary level, and I observed first-hand some significant progress in how we developed programs to meet the special needs of even the most challenging students. Now I find myself spending time with families who have adult children in need of services, and I know there is a rapidly growing number of these individuals who will soon be leaving the school setting. We are woefully unprepared to meet their needs. We owe them - and their awesome families - a whole lot more!