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:

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!):

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.