Mostly Good

Well, it's been about two and a half weeks since the kids have gone back to school. We keep waiting for phone calls, frantic notes, or disparaging comments, but haven't had them. We think things are going (mostly) OK.

Buddy Boy starts this year in a self-contained "communications" classroom for about 2/3 of the day, with him going out to "specials" (art, music, computer, Spanish) with his gen-ed peers, accompanied by an aide. This is more time out of the self-contained class than he had last year, and we think this is a good thing. I don't think that inclusion is the end all and be all for everyone, and don't think that Buddy Boy would thrive if he was in the gen-ed class all day at this point. But we do feel that it's a good thing for him to get to know his NT peers (and them him), and to spend some time interacting with them.

His teacher in his communications classroom is one of his former aides from last year, who is now a teacher. She seems fairly eager to try to please us, and appears to be working hard, but it is also apparent that she is in a bit over her head (somewhat disorganized, frazzled at times). But her heart seems to be in the right place, and she seems willing to talk with us on how to improve things, so we're trying not to push too hard (don't want to make her jaded in the first semester on her own).

We have discovered a few problems, like the fact that Buddy Boy was getting 60 minutes of math instruction/week, vs. 300 minutes/week in the gen-ed class. This was totally unacceptable to us, and we're working with his teacher to get it a bit more equitable. Even though we work academics with Buddy Boy on a year round basis, we don't want him set up to fail by not challenging him appropriately academically.

There was also a problem with them reporting that he sometimes did not go to his proper classroom after being dropped off in the morning (all children have to be dropped off at the door-no parents can come inside). We countered (with a letter of support from his pediatrician) that it was unreasonable to expect him to always go directly to his class without getting distracted along the way, and that since we couldn't walk him to his class, they should have someone meet him at the door. They now do.

A more serious problem was when we discovered that they were "not exactly communicating well" with us. Buddy Boy was supposed to (according to a written agreement) supposed to be included for 15 minutes/day in the morning with the gen-ed class with an aide. His papers have been coming home indicating each day that he attended that class and was doing his work OK. It turns out that Buddy Boy told Liz last week that he wasn't going to that class in the morning. When his teacher was asked about this, she said something to the effect of "Well, he wouldn't settle down during that time period, and was disturbing the other kids, so we put him back in the communications room and he did the work there."

ARRRGGGHH!

We can understand that if he's consistently disruptive, and after various strategies have been tried, that it may be determined that it's not the right place for him. We've tried suggesting a later time of the day, but we think that they don't have an aide to accompany him at other times, so this is why they picked first thing in the morning. We've also suggested they give him some time when the other kids aren't in there to just explore the room, but don't think they've done that. We aren't opposed to having them try different strategies, and even understand if he's temporarily removed. But to keep sending home slips saying he's going to the gen-ed class, and not indicating anything wrong, just irks us to no end. And it makes me wonder what else they're not telling us. But since he did mostly well for the second part of last year at this school, and everyone we talk too says he's doing OK, we're just writing it off to a communication breakdown at this point, and not getting into conspiracy theories.

Buddy Boy generally says that he feels good about school. But one thing I have noticed is a little increase in Buddy Boy's stress levels. He's acting out a little aggressively at home (soft head butts, slaps, and threatening language). It's nothing like he used to do, and he immediately reels it in when we call him on it, so I'm not too worried at this point. Everyone's entitled to a little extra stress when they start a new school year, start a new job, or anything else that's generally considered stressful.

Sweet Pea, meanwhile, has had a fantastic start to Kindergarten. She goes to school for the full day, and reports back excitedly each day what she's done, as well as who did what in school.

So all in all, I think things are going to be OK. We're going to keep a close eye on things, but as long as the teachers are willing to work with us, we'll keep working with them.

(Non)Sense and Sensibility

This week, in a move that can only be described as "Out of this world", the lawyer for Lisa Nowak (the former astronaut who stalked and assaulted the girlfriend of a fellow astronaut) is laying the grounds for an insanity defense because she:

...suffered from major depression, obsessive-compulsive disorder, insomnia and "brief psychotic disorder with marked stressors," defense attorney Donald Lykkebak wrote. ...

In the court document, Lykkebak also indicates that Nowak may suffer from Asperger's Disorder. ...

Of course this is not the first time that some form of autism has been linked with criminal behavior. The Virginia shootings a year ago were a classic example. One wonders when "autistic bashing" will fall out of favor, but I guess we should expect it when there is a vocal minority in families affected by autism that uses derogatory language when referring to autistics.


Meanwhile, much more down to earth (in oh so many ways) was a story recounting how a brother of an autistic person and some of his friends just finished roller blading from Florida to Maine in the U.S. (2000 miles/3200 km) to raise funds and awareness about autism. Their group they formed is called "Rolling for Autism".

Dan Tatar (whose brother Ben is autistic) and four friends from Union College in Schenectady, N.Y. made some comments at the finish line of their journey:

..."It's not a disease; it's not an illness. It's something that a lot of people have. They're interesting people; they're great people. The support network of their families and friends is incredible. That's why these people are so successful," he said, as his brother Ben hollered "Yeah!" to the crowd. ...

One of the above stories will be picked up by major news outlets, and the other, while it had significant support from a number of individuals and groups, is likely destined to be seen by a much smaller audience. I encourage all to check out the Rolling for Autism website, and drop them (or your favorite pro-autism group) a donation. Positive voices need to be heard and supported.

Better than reality?

A couple of weeks ago I was catching up reading posts on a list that I am on (which has nothing to do with autism). While doing so, I followed a link to an article about the virtual world, Second Life.

This article intrigued me, for a number of different reasons. Buddy Boy, over the last 4-6 months, has gotten interested in playing computer games. For now this has been limited mostly to a "Monster's Inc." game where you basically roam around, gather energy, and smash things, or a couple of "Game Boy" games that we have gotten for him. Occasionally he'll branch out into other online games, but the Monster's Inc. and Game Boy have gotten the bulk of his attention. As his interest and time has expanded we have found it necessary to limit his time on the computer somewhat, otherwise he would gladly spend upwards of 8 hours playing on the computer.

Another reason that I was intrigued by this is that the small amount of research I am involved in involves validating simulations as testing tools in medicine. Most of our simulations utilize computer controlled mannequins, but there are other research groups that are starting to explore simulations in virtual worlds. I have worked with simulations for more than 10 years, and I have seen people learn things during simulation that they then carry over into the real one.

Finally, the thing that got me hooked and following other links to read more about Second Life was a reference to an "island" created in Second Life solely devoted to Aspies and their caregivers.

But back to basics. "What's a virtual world?" you ask. At it's most basic level, it's a bunch of servers hosted by a company called Linden Labs. It's not really a game, as there are no points to be gained, or declared winners. Second Life has an introduction on its web site that says the following:

Welcome to Second Life. We are a global community working together to build a new online space for
creativity, collaboration, commerce, and entertainment. We strive to
bridge cultures and
welcome diversity. We believe in
free expression, compassion and
tolerance as the foundation for community in this new world.

Sounds good so far. One can join for free, but if you want to "own land" in Second Life, or start a business there, then you need to pay a fee (upfront costs as well as monthly maintenance). People make money there (commerce is carried on using "Linden dollars", which can be exchanged with U.S. dollars. As this article reports, companies such as IBM have a presence there, and some universities are teaching classes there.

John Lester, a researcher at Harvard University, has started a private island in Second Life called Brigadoon. This island is a place for those with Asperger's syndrome and their caregivers. My impression is that Lester is using this as part of a research project.

Basically I have mixed feelings about Second Life (and granted, I have not signed up and visited there-like I need another thing to take up my time). On the one hand, I can easily see any kid getting so involved in a virtual world that they ignore their responsibilities in the real one. On the other hand, having seen how skills learned during simulations can carry over into the rest of a person's life, I can see where a person might pick up socialization skills in a virtual world that could carry over. On the third hand, I'm sure that for people that are much more comfortable communicating via computer rather than f2f (face to face) it can be nice to have some online friends that share your outlook and interests when you might not find that locally.

So I'm soliciting opinions from others as to what they think about virtual worlds. Let me know what you think.

Sensory Issues

3 days ago Ang dropped by my blog and commented on my vacation travelogue:

Enjoyed reading about your vacation. We kicked around a Colorado road trip this summer as well, but were concerned about the sensory stuff associated with elevation changes. (Ended up going to St. Louis instead). I'd be interested in knowing if Buddy Boy had any problems? Or does he generally not have sensory issues anyway?

I almost replied that "No, Buddy Boy doesn's have any sensory issues." Then after a bit I thought, well no, he doesn't really have any sensory issues, if you don't count things like when he orders grits and sausage (one of the few restaurant foods he'll eat) the grits have to be the right consistency. Or the fact that when he gets stressed a bit, he reverts to chewing on things (something that he doesn't do nearly as much as he used to. Or that the sun bothers him when it's too bright, the music's too loud when he doesn't like it, too soft when he does, and yeah, he's not wild about clearing his ears to equalize at altitude.

But a couple of things stand out. One, that all of these things are worlds easier to manage (both for himself as well as us) than they used to be. And two, that we really don't notice them much anymore. They're just part of who he is, and how he is. And accomodating him and what sensitivities he does have is not that big a deal, and comes naturally.

We plan ahead and let him pick which of his stuffed toys to take with him as a comfort item. I always carry a few extra McDonald's straws in the car (they're thicker and heavier than other restaurant's straws, and hold up better for chewing). His soft sweatshirt jacket is left in the open in the car, so that he can lay on it as need be (or escape under it). Although we give him gum to chew as we climb in the mountains, the first time his ears are about to pop he gets anxious. We've talked about it ahead of time, though, and subsequent times are weathered quite well by him.

So I guess the bottom line is, Buddy Boy is not nearly as sensitive as he used to be, he's gotten better at figuring out ways to help himself and communicating to us how to help him, and we've gotten better at anticipating things that might need amelioration.

So there aren't any issues, after all. I was right to begin with.

Travelogue

It's been just over a week since we returned from vacationing (holiday) in Colorado (Southwestern U.S.) We're all getting settled back in and readying ourselves for the kids returning to school tomorrow (Buddy Boy to 2nd grade, Sweet Pea to Kindergarten).

When I was a kid our family took a camping trip every summer (usually for two weeks). We traveled all over the U.S. and Canada. It was a great way to have fun, see some scenery, meet great people, and learn some geography and history without really trying. I never appreciated how great those trips were at the time, but I do now, and hope to pass some of the same memories along to my own kids. Because of time constraints at work, I'm usually limited to only one week off at a time, but it's still great to take a trip with the whole family. Liz refuses to camp, but it's still fun even if you're staying in a motel or condo.

We loaded up the "family truckster" and left early on Saturday morning. Although in an ideal world the kids would both gaze placidly out at the scenery all day and not get in any fights, we decided to serve the sanity of all involved, and bought a portable DVD player for the car. It's better than drugging them, and has the advantage of being legal. We drove for 11 hours the first day, and got as far as Limon, Colorado. That's about 760 miles (1216 km) with a 7 and 5 year old. While not perfect, the DVD player worked wonders in inducing a trance like state for hours at a time. While I still don't believe in its routine use in the car, I must say I now understand those parents that do.

There isn't much to see or do in Limon (apologies to any Limonites), and we pressed on the next morning another 380 miles (608 km) to Durango, CO, which was going to be our base for the week. We got there early enough that we were able to get some time in in the pool. We stayed at a condominium complex which was OK, if a bit dated.




One of the first things we did in the area was to explore Mesa Verde national park. This park is noted for being the site of many cliff dwellings left by the Anasazi Native American tribes. We always think of America as a young country, and tend to forget that there were people here a long time ago. The Anasazi came to Mesa Verde in about 600 A.D. First they dwelled in huts dug in the ground, while the cliff dwellings pictured were probably built in the 1200's. The Anasazi left this area for unknown reasons near the end of the 1200's. We're always ensured of getting a lot of knowledge out of guided tours, as Buddy Boy can't help but ask at least 3 questions every 5 minutes (even though we prompt him to take turns and let others also ask). He does ask some good questions, though.



We had to hike a couple of miles to get to the ruins, but the kids held up well, and it was well worth it. The kids also did well on some other hikes we took during the week. They collected a bunch of rocks which they ended up stuffing first in their pockets, and later in the cupholders in the car.



What would a trip to mining country be without panning for gold. We took a couple of off road jeep trails, and besides seeing some great scenery we also caught a little "gold fever" while panning for gold. The temperatures during the day were in the high 80's to mid '90's (31-35 degrees C) around Durango, which is at 6500' (1980 meters), but it dropped into the 60's to 70's (16-22 C) when we were on some of the trails that went up as far as 13,000 feet (3962 meters).



We drove up to Silverton (an old mining town) instead of taking the historic narrow gauge train because the train trip takes 3.5 hours (rather than a little over an hour driving). We love old trains, but didn't think the kids would be up for that long sitting on the train. Once there we explored some ghost towns out of town, as well as saw some alpine meadows and drove by some snow.

The trip (like all good things) came to an end much too soon. Before we knew it we had to fire up the DVD player for the trip back home. The only casualty on the trip was a headphone cord that got chewed thru, which was spot repaired with a band-aid (plaster).

Now we need to start planning next year's trip!

Shocking American Export

photo credit- J.Star

Why is it that it seems that only the worst of American culture is exported from its shores? It's no wonder to me that America and Americans are villified around the world, when it seems the best we can export are the likes of Britney Spears and Michael Jackson.

But it seems that we have sunken to a new low. I've touched before on the abominable treatment that goes on at the Judge Rotenberg center (JRC)in Massachusetts, where electric shocks and other tortures are used on autistics in order to "train" them not to misbehave.

Now it seems that it's not enough to have this shameful treatment here in the states. We have to try to drag the rest of the world down with us. An article that appeared this week on NineMSN out of Sydney, New South Wales, Australia looks at the electric shock treatment that's used at the Judge Rotenberg Center, and asks parents of Australian autistics if they think it's a viable treatment option.

For those unfamiliar with the electric shock treatments used at the JRC, for "clients" that are sent there by their parents, after a period of time where positive incentives fail to decrease undesired behaviors, electrodes are placed on the students (after obtaining parental and court approval) and the students are shocked whenever "bad" behavior is exhibited.

Dr. Matthew Israel, the instigator and chief proponent of the use of "negative aversives" at the JRC was interviewed for the Australian article.

"The real torture is what these children are subjected to if they don't have this program," said Dr Israel.

Autistic children in the program do not suffer any long-term side effects, according to Dr Israel.

"…it has absolutely no side effects and is extremely effective as a corrective procedure to encourage children not to show violent behaviour," he said.

"If it didn't hurt it wouldn't be effective. It has to hurt enough so that the student wants to avoid showing that behaviour again."

As one can plainly see, he is a very sensitive and sensible individual. I wonder how he would like to be hooked up to the device he routinely uses on children, and give them the control over whether to shock him or not. I'm sure he wouldn't suffer any side effects. People all over the world would consider this torture if prisoners at Guantanamo Bay were subjected to this. Why is it considered "treatment" when used on the developmentally disabled?

Fortunately the majority of Aussies interviewed for the article seem to be a sensible lot, and agree that such "treatment" is totally unsuitable and unjustified:

Queensland mum, Joy, who struggles to cope with her autistic son Jayden, thought she would try the new device for herself.

"Before trying this I was sitting on the fence and I wasn't sure if I was for or against it."

"After feeling the intensity of this, I'm totally opposed to the whole thing," she said.

Even in cases where there has been a history of repeated violent behavior, an Aussie dad could see that torture was not the answer:

Sydney dad, Jim, has had his teeth broken three times by daughter Molly and he was also willing to try this new technique.

His six-year-old daughter has a history of being violent and he was prepared to be open minded bout this treatment.

"It might seem cruel (the eclectic shock) but in the times where she's smashing her head against the concrete or doing physical harm, that's got to outweigh ( the pain) side of it," he said.

"Ow that hurt…it’s painful, very painful," said Jim, after we've given him a shock using Dr Israel's system.

Jim thinks the therapy would just torture Molly who would be in tears after being subjected to the controversial shock treatment.

The article concludes by interviewing an Australian autism expert, Dr. Jackie Roberts, who felt the shock treatments would only make things worse:

"Children with autism in particular have a very high level of fear and anxiety, and punishing them actually increases that fear," said Dr Roberts.

"…it's likely to make the behaviours worse," she said. "We do know that punishment has a short-term effect."

It would be a very sad world where no one recognized this "treatment" for the torture it is. I'm heartened to hear the voices of reason by our friends down under, and I can only hope that they don't think that all of us up here are as nuts as Dr. Israel.

L'Arche-An Interesting concept in community

So we're on vacation (holiday) this week, and today found us driving from Limon, Colorado to Durango, Colorado. Much of the trip is a rising and falling two lane highway thru the high plains of rural Colorado. As the road rose and fell, it became difficult to receive any radio stations for more than 5-7 miles. I cycled the car radio from Jimmy Buffet to Spanish folk songs to preachers to (I kid you not) Spanish rap music (I was heretofore unaware of the genre).

Finally we reached a place where there was only one public radio station that had any reception. Fortunately, we were able to receive this station for about an hour. The show "Speaking of Faith" was on, which is often fairly interesting, as it has in depth discussions of a wide variety of topics of both general and religious interest. Today the show was a look at a L'Arche community in Clinton, Iowa.

I had never heard of L'Arche before today. After hearing of it today, I must admit it sounds intriguing. I have an instant and intense revulsion to anything that smacks of institutionalizing individuals. And even "group homes" have a somewhat patronizing feel to me. But in listening to the discussion today, I have to admit that at least the people interviewed at L'Arche are talking the talk, and may be walking the walk as well.

The L'Arche movement was started by philosopher Jean Vanier in 1964, when Vanier invited two men with mental handicaps to live with him in a home in Trosly-Breuil, France. From this humble beginning, the movement has spread to include 120 communities worldwide, with 16 being located in the US.

The members of each community that have mental handicaps are referred to as "core members", while those that live with them are referred to simply as "assistants". Some communities are based in Catholicism (as the original community was), some are Christian of mixed denomination, and others are multi-religious. The communities are based on four principles:

The recognition of the unique value of persons with a developmental disability to reveal that human suffering and joy can lead to growth, healing and unity. When their gift is received, individual, social and ecclesial change occurs;

Life sharing where persons with a mental disability and those who assist them live, work and pray together, creating a home;

Relationships of mutuality in which people give and receive love;

Christian community that welcomes people from all faiths, based on the Gospel and dependent upon the Spirit of God where faithful relationships, forgiveness and celebration reveal God's personal presence and love.

The website and the above principles don't do justice to what I listened to. The people that were interviewed that were assistants at the Iowa L'Arche community provided many examples of how the people that they lived and worked with became their friends and of how they recognized that their communities were not a solution for society, but rather a signal to society that they needed to find a way to respect all of those in our midst and find ways to integrate them into society.

Some also reflected on how all of us in society are handicapped in some way, and of how we need to value each and every person in society, and recognize what they can contribute. Of perhaps greater import, the people interviewed recognized that not everything was worked out in their communities, problems existed, and that everyone in the community needed to work together to solve them.

The program is available for listening or downloading online here. Krista Tippet, the radio journalist, really did an excellent job with this. Her treatment is far superior to what I write here today.

Although I hope and expect that my son will be able to live either independently or semi-independently, it is possible that this will not be feasible. If he were to choose to live in some type of communal arrangement, I can think of far worse places than a L'Arche community for him to live in.