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.

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.,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!