Janus

photo credit-Matthew Oliphant
creative commons license


The traditional New Year's song, Auld Lang Syne begins,

Should auld acquaintance be forgot,
and never brought to mind?

One might think, from the scarcity of my posts these last few months, that I had forgotten all of my blogging friends and acquaintances. You have all remained in my thoughts (and sometimes in my prayers), but I am certainly guilty of letting this blog lay fallow like a field in winter. So in the tradition of the season, I'll recap a little of what's been happening this past year.

I'll start with last December. Remember the Ransom Notes campaign? I thought this campaign (actually the response to it) marked a significant moment in autism advocacy. Ari Ne'eman and ASAN coordinated a successful effort by a wide spectrum of groups and individuals to quash an ad campaign in New York City that demeaned autistics and others. Online advocacy successfully crossed over to "real world" results, which totally rocked!

January was a quiet and happy time for us. Buddy Boy had a family John Deere themed party, followed by a successful "Mad Science" party with kids from school. It was a great start to the year.

March was when the Poling case entered the news. I was mightily disappointed by the verbal musings of the father in this case, Jon Poling. As a physician (and a neurologist) he could have taken the opportunity to point out that his daughter's case of being "vaccine injured" was a rare anomaly, instead of spouting off with unproved suppositions that there were thousands of cases like her out there. Perhaps his comments were only rehashing ones made by his lawyer, Clifford Shoemaker, who was at the Poling's side at their press conference.

Speaking of Shoemaker, in April he served a ridiculous subpoena against Kathleen Seidel, who fought back with all the force and tenacity of a superhero librarian. Shoemaker eventually was disciplined for this with a slap on the wrist. Still, it was good to see the "good guys" win.

The mind is a funny thing. Before going thru my old posts to put this together, I had completely forgotten the trouble Buddy Boy had in school last Spring. Reading my post brought all of my feelings from the time bubbling back to the surface. Last year was the first year that Buddy Boy was pretty much fully included in a regular classroom. It started off great, but deteriorated in the Spring to a combination of chaos and mayhem. If not for the understanding and forbearance of his teachers and the administration at his school (as well as Liz's immediate support when necessary), Buddy Boy might have been forced to leave his school. I'm not sure where we would be this year if they hadn't stuck with him when the going got tough last year.

This year has again started out great, and continues so thus far, with Buddy Boy in a class where a regular ed and special ed teacher are "co-teaching" this year. Only a few minor speed bumps have been encountered. After looking back at what happened last Spring, we'll be ready (or as ready as we can be) for any recurrences this year.

April is also when I attended a talk by the "philosopher" Peter Singer, who advocates that parents should be able to dispose of (kill) any child they don't want, especially defective ones, until they are several months old (or older, if they are disabled). Eugenics has never really died out in the world. Advances in genetics and prenatal testing are just allowing it to be practiced largely out of public view nowadays, as prospective parents of children with Down Syndrome are encouraged to abort their children before they are born. Unfortunately, we can expect the same response when prenatal tests for other conditions, such as autism, become available. I credit attending this lecture as one of my prime motivators for returning to school this year. I just completed my first two courses in bioethics (did I mention that I got "A's" in both classes?). Evil (especially polite, well-spoken evil) should never be left to stand unopposed.

The mentioning of Singer reminds me that one of his most erudite opponents, Harriet McBryde Johnson, died this year. Although I never met her, her loss is one that was a great one to the disability rights community, and one that I felt deeply. If we all became half as good an advocate as she was, the world would be a better place.

May also found the Judge Rotenberg Center in the news again, as revelations of repetitive electric shocks to "students" triggered by prank phone calls proved outlandish enough to get the media's attention (all of the repetitive shocks to students for minor infractions such as talking back or not being neat evidently aren't enough to stir a media response any more). Supposedly the JRC is having its practices reviewed by the state of Massachusetts thru this December, but I haven't seen any official site saying this, and haven't heard any other recent actions taken against the JRC. Perhaps 2009 will finally be the year that the general public pays attention to the atrocities that routinely take place at the JRC, and close the place down.

Summer was great for us. Buddy Boy continued to make strides in conversing with, as well as socializing with, other people. He even showed the first inklings of becoming his own advocate at one point. Sweet Pea got her first taste of freedom as she lost her training wheels this year.

Summer also found us getting physical, as we cleared and planted a garden, and later reaped what we had sown (the parts that the moles hadn't cleared out, anyway). Our final harvest was a pumpkin for Halloween.

The political scene in the U.S. was certainly an exciting one this year. It was at least somewhat ironic that the majority of the disability community did not support a ticket that had a physically disabled person on the top of the ticket, as well as the mother of a developmentally disabled person as the VP. Barack Obama has promised a lot to the disability community. I hope that he can deliver on half of what he has promised, and wish him well.

This holiday season finds me thankful for all the people that made it down to our house for Christmas this year. We got a call on the 23rd from an ER nurse two states away from us. "I'm xxx, and I'm calling on behalf of (my sister), who just wants you to know that she's all right after the accident".

Accident???!!!

A semi-truck had swerved a bit on some ice in front of her, and she had swerved a bit reflexively to try and avoid hitting the truck. She avoided the truck, but lost control of her own vehicle, and ended up going into the ravine between the highway lanes, up the other side, flying (literally) for 30 feet in the air, and ending up in the opposite ditch. Other than being banged up and looking like a cross between a raccoon and a Klingon (black eyes and a big hematoma in the middle of her forehead extending down into her nasal region) she was fine. Needless to say, her vehicle was totaled.

I drove down (thru blinding sheets of freezing rain) to make sure she was OK, spent the night there, and drove back with her up to our place the next day. Having that happen sure makes you appreciate the mundane things in life, and keep you from lamenting the things you might have gotten from Santa.

So that's about all that's been happening from the Club 166 point of view this year. I've signed up for two more courses this coming semester (Law and Bioethics and Justice in Health Care). I'm sure that once classes start up, I'll be mostly absent again.

Happy New Year to one and all!

Clean Sweep

There are many more important things that I could (and should) be blogging about, but this amazed me so much I just had to write about it. My sister came to stay with us from out of state for the Thanksgiving holiday. While we were preparing our back room upstairs for her to stay in, Liz noticed that the walls had some "stuff" on them.

"What is that?", she said. Sweet Pea, ever the helpful one, said "Looks like poop!" "What is it?" Liz says again, a bit more stridently. "It's smeared all over the place."

Buddy Boy chimes in "That's from the fly paper."

My heart sinks a little. The fly paper.

A couple of weeks ago we had thousands of flies swarming outside of our house for a couple of days. We called an exterminator, who assured us that this was common this time of year, and that they would go away with the first frost. Needless to say, a couple dozen made their way into the house. Buddy Boy insists that any insect must be returned to it's environment if we won't let him keep it as a pet (Andrea would love this kid), and Sweet Pea seems to think that any insect has the power to kill her instantly, and is thus terrified of them.

Faced with the prospect of dealing with both of them, I looked for a way to eliminate the problem. I looked thru our pantry and found a couple of rolls of flypaper. Thinking this might work, I put one up in the back room. Liz had me take it down a couple of days later after it became apparent that the unique sticky surface attracted curious kids more than it did flies. I didn't notice at the time that they had managed to smear some of the sticky stuff on the cream colored walls (which we don't have matching paint for).

Now, with 24 hours before my sister shows up, I was tasked to "Take care of that!"

Realizing that I didn't want to make a bad situation worse, I resolved to get the icky brownish yellowish stuff off the wall without destroying the paint (I did not want to have to paint a wall before she arrived). So I proceeded carefully.

First, I started with a rag with dishsoap on it. I scrubbed carefully and increasingly harder for over 20 minutes. I got some of it off, but most of it stayed where it was.

Like a philosopher progressing steadily up thru Maslow's pyramid of human needs, I tried what I viewed as successively more potent materials on the wall. The next material I tried was a floor and tile cleaner. I tried it carefully on an out of the way spot to make sure it wouldn't ruin the paint, then had at it again for another 20 minutes. Again, it left most of it where it was, only it turned what remained a darker shade of gray. Getting exasperated, I retreated to the mud room and tried some pine based floor cleaner, again to no avail. This was starting to get to me. I finally decided to go for the big guns-a scouring pad and kitchen cleanser-realizing that I would have to be very careful and would still probably remove some paint.

Luckily Liz saw me at that point and asked what I was doing. Fortunately it had been long enough that she had lost most of the fire out of her eye, and recommended the Mr. Clean magic sponges kept under the kitchen sink.

With little hope for successful resolution of the problem at this point, I took the sponges to task. I moistened one and started scrubbing lightly. And after spending more than an hour trying to get the stuff off, it started lifting off immediately. What's more, the paint underneath seemed totally unharmed. In five minutes I was done with those spots, and gleefully going after other spots (finger prints, putty, crayon marks, etc.).

"There's some rockin' chemist out there that hit one out of the park with this!", I said. Life is full of small miracles, and I experienced one this week.

Being Thankful

photo credit-Hey Paul

creative commons license

Thursday is American Thanksgiving Day. It's one of my favorite holidays, because it remains one of the holidays that is least tainted by commercialism. We get to sit down, have a good meal with family and/or friends, and reflect a bit on all that we are thankful for (it doesn't hurt that I LOVE turkey, stuffing, and pumpkin pie).

We're now far enough into the school year for me to say that Buddy Boy's teachers, indeed his whole school, are bigs thing I'm thankful for. This year has been going GREAT! Buddy Boy's school instituted a model of teaching this year called "co-teaching". I'm not sure if it's the model or the individuals involved (or both), but it has been working out very well.

Basically, co-teaching is when a heterogeneous class of students is taught by both a gen ed teacher and a special ed teacher. One usually takes on the role of being the "content" specialist, while the other becomes the "process" specialist. Like all new things, we were a little anxious regarding how this would work out for Buddy Boy, but it has succeeded grandly.

Both of Buddy Boy's teachers volunteered to co-teach. One of them is a special ed teacher, and the gen ed teacher is actually currently pursuing her master's in special ed, so is open to doing things in non-conventional ways. The model seems to work for a number of reasons:

-the presence of two certified teachers decreases the student-teacher ratio

-rather than teaching of kids with special needs devolving down to the para-professionals during busy times during the day, there is a certified teacher to actually teach the kids.

-special ed kids are more likely to stay in their home classroom for larger portions of the day, rather than being parceled out to other venues.

-because it is voluntary, both teachers are enthusiastic about the model.

-even the kids that aren't identified as special ed get extra help when they need it.

The principal of the school also has a special ed background, and welcomed us with open arms when we transferred to this school two years ago. Everyone in the place knows Buddy Boy, and he is well liked by the teachers and staff.

I know that Buddy Boy is maturing, and in doing so is able to go with the flow more than he used to. Though this is a big part of his success, I'm equally convinced that it has been due in large part to the attitudes that are prevalent in the school and in his classroom in particular. He still has little incidents (like a couple of weeks ago when he followed another group of kids outside of the school when he was on the way back to his classroom from the school nurse). But these things are seen (and managed) as little speed bumps along the way, nothing to be concerned about, just things to be dealt with. His teachers celebrate his successes, instead of his shortcomings.

I'm a real thankful guy.

A Question As To Her Judgement

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Remember Wendy Portillo, the teacher in Port St. Lucie Florida who back in May this year allegedly had her students publicly humiliate and belittle a 5 year old student, Alex, then vote him out of the class? Well, the Port St. Lucie school district finally made a decision on Wendy. According to the TC Palm:

While school district internal investigators said there's no evidence Morningside Elementary teacher Wendy Portillo meant to cause harm or embarrassment to Alex Barton, they said in a report released Thursday there is a question as to her judgment.

Additionally, the article noted:

The St. Lucie County School Board voted unanimously Tuesday night to suspend Portillo without pay for one year. Her attorney notified the School Board in a letter that Portillo intends to contest Lannon's recommendation with the state's Division of Administrative Hearings.

So after 6 months of investigating, this is what they came up with. It's certainly less than I would want for someone who psychologically traumatized a 5 year old child, but if she moves on and gets a job somewhere else it will be worth it.

The report by the school also said:

The incident could cause Portillo to lose the respect and confidence of her colleagues, students, parents and the public, the report said, citing the extensive national and local coverage of the incident.

I don't think Portillo could lose much more respect in the public eye, though in checking the comments on that story 2 out of 6 still support her.

There are a lot of great teachers out there. Buddy Boy has two of them this year in his class. But when anyone abuses 5 year olds, (especially when they are in a position of authority and trust) then that person needs to be called out.

Here's hoping other potential offenders take notice of what happened to Wendy.

BOO!

Well, it might not be the biggest pumpkin we've ever had (it's only about 10"/25cm high), but

We planted it.

We kept the rabbits and other animals from eating it.

We harvested it.

And then we carved it. The hardest part was in achieving consensus on what design to use.

Send Comments to NBC

Last week I put up a post concerning a skit on NBC's Saturday Night Live, where the whole "joke" was making fun of a disabled person.

Well NBC thinks it's so funny they have the clip up on the SNL web site.

I just registered to make comments, and posted one myself.

I invite others to do the same.

Sorry there's no picture for this post. I'm rushing off to work.

SNL and Disability-Not Pretty

So I tuned in to Saturday Night Live on Saturday evening (mostly to see what they would do after the Vice-Presidential debate this last week).

They had a very funny opening, and a couple of good bits. Then they did this "Lawrence Welk" bit:



It started out OK. I am old enough to remember going to my grandparents' house as a kid, and being forced to watch the Lawrence Welk Show whenever it was on. It was corny even back then, and seemed a fitting thing to lampoon. Then it got to about the 2 minute mark, where it appeared that the essence of the bit was how weird and disgusting the physically disabled sister was.

I was totally disgusted. I guess that it's still OK to laugh at the disabled, even if you're SNL.

Political Surprise

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No, not that one. This political surprise was a lot more local.

You could have knocked us over with a feather when we got this news.

Buddy Boy, now 8 years old and in third grade, decided to run for the school council. To do so, candidates had to give a speech and make a poster. His poster simply said:

Vote for Me!

Buddy

We asked him what he said for his campaign speech. He said he told the kids that he would do whatever they said (sounds like he has a future as a politician).

And then the real shocker
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He won!!!!

His teacher assured Liz that she had not made a mistake, and Buddy Boy had indeed been elected by his classmates. Buddy Boy's teacher moderates the council, so she'll be able to facilitate his participation (yahoo! another free social skills opportunity).

Buddy Boy seems pretty proud of himself, but at the same time says, "I thought I was going to win".

It's times like these when I can truly feel that anything is possible. And I also feel relieved, because we never seem to know exactly how the other kids are feeling about him. Are they accepting him for who he is? Do they like him at all? Or just tolerating his presence?

Today those fears recede to the background. Today we celebrate.

Palin speaks to us

"To the families of special needs children all across this country, I have a message for you. For years you've sought to make America a more welcoming place for your sons and daughters and I pledge to you that if we're elected, you will have a friend and advocate in the White House".

Tomorrow, Republicans will be crowing about a lot of the great "lines" that were in Sarah Palin's speech.

Tomorrow, Democrats will be bashing the Republicans.

But tonight I rejoice that someone who will spend her life "walking the walk" of raising a child with special needs may end up having the ear of the President of the United States. The lines quoted above were heartfelt and spoken with a sincerity seldom heard from any politician.

If Sarah Palin doesn't win this election, I want to hire her as an advocate for our next IEP meeting. And as all of you who have gone to IEP's know, an advocate's job is at least as tough as being Governor any day.

Labels

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In preparing for our recent cross country vehicular jaunt (i.e., vacation/holiday) I faced a bit of an ethical dilemma. The US National Parks Service offers a variety of different passes that are valid for admission to all national parks and forests. Besides these annual passes, it is also possible to purchase access for a limited period of time (usually 7 days) for a discounted amount.

I had been vaguely aware of the Access Pass from a local autism online group. The Access Pass gives free lifetime admission to the parks to those with permanent disabilities (along with up to 3 other people traveling with them in the same non-commercial vehicle). I hadn't thought about it much, but now took the time to consider it.

Was Buddy Boy permanently disabled? I have taken the tack of presumed competence, and thus proceed assuming he will continue in school, get a job, and be able to live independently. Would I be "giving in" if I had him labeled as having a permanent disability? Would I be lying to myself from here on out if I said I was presuming competence, but at the same time presenting a card that said that Buddy Boy was permanently disabled?

When we first knew that Buddy Boy was different, I had at least moderate resistance to placing any sort of a label on him. What advantage would it confer? And at what cost? At first I thought that the costs of placing any sort of label on him (ostracism, bullying, presumed incompetence by the schools) far outweighed the potential advantages (identity, and knowing he was not bad, just different). In fact, if we could have obtained educational supports for him without publicly labeling him, I might have continued to lobby for such an approach.

I have no problem with Buddy Boy knowing he is autistic. We treat it as a matter of fact thing around our house (much like we treat the fact that he joined our family thru adoption). I do wonder, though, about future implications of him having his name in official databases with a label next to it. Will it affect future employment opportunities? We cannot always predict unexpected outcomes from decisions we make.

In the end, my decision on whether to get an Access Pass for Buddy Boy was based on pragmatics. I first consulted the National Parks FAQ's regarding the pass. According to this site:

Who qualifies for the Access Pass?

The pass may be issued to U.S. citizens or permanent residents that have been medically determined to have a permanent disability that severely limits one or more major life activities.

A permanent disability is a permanent physical, mental, or sensory impairment that substantially limits one or more major life activities, such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. (emphasis added)

Surely Buddy Boy's ADHD and autism qualified him as having a learning disability (the powers that be certainly thought it severe enough to kick him out of his regular classroom and place him for awhile in a class for emotionally disturbed kids). As to whether his autism and ADHD will affect his learning permanently, the experiences of adults on the spectrum would certainly seem to bear this out. While people develop various "work arounds" as they mature, they don't magically learn not to be autistic as they get older.

That left the question of tracking him in a central database. A little asking around revealed that they don't record a Social Security number with the name, so there's no way that they can track these passes and merge them with other databases. Finally, as Buddy Boy gets older, it can always be his decision whether he uses the pass or not.

So we went with the pass. Got a letter from his doctor detailing his autism and its effects on his learning, showed up at the park and presented the letter, and got the pass with no hassle at all. It felt good to get something useful from my tax dollars, for a change.

So, first we used the pass to drive thru the Badlands


Then to visit Devil's Tower National Monument


And finally to visit Yellowstone National Park


Further photos can be found here.

When Aspies Meet

So, our first full day in Yellowstone Park we went to visit Old Faithful geyser. We hung around for the 35 minutes or so until the next eruption, and secured ourself a front row seat so the kids would get a good view. Afterwards, when asked how he liked it Buddy Boy replied "I thought it would be bigger". He had seen it in videos before we left, and evidently a 100 foot (30 odd meters) tall plume of water with steam in person didn't measure up to what he thought he saw in the video. But still he liked it, and wanted to stick around until the next eruption.

We started walking around the large boardwalk that is in the general area of Old Faithful, and leads to a number of hot springs and other geyers. While we were walking, we passed another family group who had one young boy who was perhaps 10 years old or so. Buddy Boy walks up to him and says,

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"Did you see Old Faithful?"

Other Boy (OB): "Yea, it was great. Did you see Castle Geyser? It's the one back there. It's even bigger."

Buddy Boy (BB): "Old Faithful will erupt again in about one hour."

(OB): "Castle Geyser only erupts once a day. You have to check the schedule at the ranger station. It already erupted today."

(BB): "The magma chamber must be close to the surface here. That water's really hot."

(OB): "The water's over 200 degrees."

(BB): "Only special types of bacteria and algae can live in the water."

(OB): "Castle Geyser is older than Old Faithful. You should check the sign by the building over there, so you can see it erupt next time."

(Voice from mother of Other Boy, who has walked about 100 feet farther down the walk with the rest of her family): "Jordan! We need to go."

(BB): "Wow, you're even smarter than me!"
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Now, of course, I have no idea whether Jordan (the Other Boy) was on the spectrum or not. But I really enjoyed watching the brief exchange between these two young lads. They both appeared to genuinely enjoy talking to each other. Buddy Boy does not often hold down conversations with other people (though when he does, it usually involves topics of special interest). And whether or not Jordan was on the spectrum, there was much recognizable about him-his walk, his speech patterns, the way he kind of looked at Buddy Boy without really looking at him, etc.-that resonated with me and reminded me very much of Buddy Boy.

It was also kind of cool how Buddy Boy identified another person (whether randomly or not, I don't know) who shared his interest in geysers. Buddy Boy was even impressed enough with Jordan that he payed him the ultimate compliment ("You're even smarter than me!"). Buddy Boy always insists that he's smarter than I am.

Anyway, that's how we spent our first full day in Yellowstone.

Wordless Wednesday

Where in the World...

Are we??

Who can figure out which state in the Continental U.S. we are in?

This is a contest. But as I am a cheapskate, on the road, and am figuring this out as I go along, I don't have anything to give away. So for the prize, for the first one to figure out where we are, I'll e-mail you some scenic views from our vacation (holiday).

Tonights clue is the picture up on top. If someone doesn't figure it out in 24 hours, I'll edit this post and add another clue.

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edit
The first guess. The first guess!

OK, Do'C got it on the first try. We actually spent the first night of our vacation in Iowa, but with apologies to any Iowans out there, I didn't take any pics that first night (though the kids and I did find a family of toads outside the motel while Liz was checking in).

Our second night was spent in South Dakota (we didn't stay in Sturgis, we actually stayed a few miles down the road in Spearfish). But that didn't matter, as the annual Bike Rally in Sturgis draws 500,000 (!) people on their bikes (mainly Harley Davidson's) to South Dakota. Our first inkling that our vacation coincided with Bike Week was in trying to make reservations. Liz found that most motels (single rooms in 2 star nothing special places) were going for $300/night!!! I was like "What!! We're not talking New York City, this is South Dakota!" We soon found the reason, and eventually found a room for just over $200/night, which still hurt.

There have been Harleys everywhere!


And amazingly, the kids don't see anything abnormal with this. Today we saw the Corn Palace in Mitchell, SD (it's a building that is covered in-you guessed it-corn! Quite a-maize-ing, actually),


As well as stopped at Wall Drug for "Free Ice Water!" as well as ice cream.


Tonight we've moved on. For a second prize (reward same as the first) this new location has unique geologic phenomena found in only 4 other places in the world. For the prize, name the place, AND the 4 other countries where these phenomena are found.

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edit

Next clue.

Although there are a few scattered in other places, the 4 other countries that have significant concentrations of these geological phenomena that are located in the park we are visiting are Russia, New Zealand, Iceland, and Chile.


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edit

Ding, ding, ding, ding!

We have our second winner! Niksmom is right. We saw Old Faithful erupt today (twice), as a matter of fact.

Comment of the Week Award

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creative commons license

Having been tagged by Maddy a while ago with the dubious distinction of having the "Comment of the Week" on her blog (and she, in turn, was inspired for this award by Scribbit) I hereby, by the power invested in me as the owner of this blog, and without too many further commas in this endless sentence, bestow my first "Comment of the Week" award to my fellow Midwesterner Marla for her comment on my "Kids Say the Darndest Things" post where she said:

I love it! Hey, I would be all for just 'compunicating' with our doctors. That would save a lot of time. ;)

What a little smartie.

Besides being a fellow Midwesterner and a parent to an autistic child thru adoption, Marla is a lot of things that I am not, like artistic (she has some great photos, check them out) and a natural writer who provides a window into her feelings thru her blog where she follows the adventures she, her daughter Maizie, and her husband Joe (what a great name for a husband!) have.

Anybody that can come up with a new word (Compunicating) that so eloquently describes something deserves an award.

Feel free to pass this on as you see fit, Marla. It seems to be a fairly loosy goosey award.

Kids Say the Darndest Things

When I was young, Art Linkletter had a show on TV, one segment of which was "Kids Say the Darndest Things". He would interview young children (about 4-11 years old) and elicit some "unusual" answers from them.

In the spirit of that show, here are two snippets of conversation involving Buddy Boy that Liz related to me.

Buddy Boy went to his psychiatrist's office today, and Liz told Buddy Boy that he had to talk to the psychiatrist, and not just sit there and play with his Nintendo DS. So Buddy Boy went in there and after a bit said,

"So, are you like an occupational therapist for the brain?"

"Not exactly. I'm actually a child and adolescent psychiatrist."

"So do people come to you if they have problems with their brainstem?"

"No, actually, if they had problems with their brainstem I wouldn't be the right person to help them."

After a bit, Buddy Boy said,

"I know! I know! I know! Instead of talking, we could just e-mail each other back and forth!"

That's my boy. He's always thinking.

Later, when he was getting out of the bathtub, Buddy Boy asked Liz,

"Can I join the NAACP?"

"Umm, I don't know, dear. I don't know if they take child members, I'll have to look into that. Why do you ask?", responded Liz.

"Because then if someone treats me bad, I could just say I was a member."

Oh, that it were so easy. I'd have signed him up with them, as well as ASAN, a long time ago.

No More Training Wheels

Sweet Pea is 6 now. Last year she briefly expressed the wish to take her training wheels off of her bicycle, so we tried it. It didn't work out so well (despite putting extra knee, wrist, and elbow pads on her, lot's of encouragement, etc.), so we put them back on.

This year she decided that she wanted to try again. So about 6 weeks ago I lowered her seat all the way down, and helped her glide down the incline on the cul-de-sac next to our home, with her feet out to the sides to keep her balance/keep her from falling. We did that for two weeks, then I bribed her to put her feet up on the pedals while I started her off and had her glide down the incline.

Well, one thing's led to another, and after two trips to a local parking lot with an ever so slight incline to it, I can say that those training wheels are off for good.

Sweet Pea still doesn't have quite enough control for a trail or a sidewalk, but she can start herself, turn, and control her bike better every time. Her confidence (fashion sense?) is such that she refuses the extra protective pads, and her competitive nature on the last outing had her complaining that Buddy Boy was pedaling faster than she was.

Buddy Boy, for his part, was being a great older brother. He demonstrated various things to her (like how to keep your pedals level while you're turning so they don't catch the pavement and dump you on the ground) and did a good job of keeping far enough away from her so that she didn't feel like she was going to crash into him. I also took the time with Buddy Boy in the parking lot to work on such skills as looking before you turn, signaling, and pedaling while standing up.

I must admit to feeling a bit of a pang during our last outing. My baby girl is growing up, and we'll never raise a baby again. Soon she will tire completely of her parents, and be primarily involved with her peers instead of us. While I have some inner trepidation that Buddy Boy will not be able to live independently, I also fear that Sweet Pea will grow up too fast, and leave too soon. She already pushes limits constantly, considers herself the center of the universe, and can pout and throw a fit like the hardest core 'tweens around.



Meanwhile, summer carries on, with the kids going to day camps and us going to festivals and carnivals. Life is good. Soon we will depart on our annual vacation (holiday). It's really a shame that kids don't realize how good they have it. What I wouldn't give to have a summer filled with playing outside, going to camp, ice cream, and no school or work.

Ribbit From the Headlines (aka Kneedeep in Controversy)

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Amongst all the commotion regarding Savage things said by one individual, Neandarthal comments from a Canadian source, and initial forays into genetic testing for autism, one little story seemed to slip under the radar.

Human-frog hybrids reveal autism's secrets says the headline in The New Scientist magazine article.

Human-frog hybrids might reveal the neurological secrets of autism. By fusing cells from the preserved brains of deceased autistic patients with the eggs of a carnivorous African frog called Xenopus, scientists have started investigating the way the brain cells of people with autism behave. ...

The creation of chimeras, or combinations of two different species, is not new. But the creation of animal-human hybrids is a relatively new endeavor. In 2005 Dr. Eugene Redmond went to the Caribbean to implant human stem cells into the brain of African monkeys. He hoped to get those cells to produce dopamine, and lead to a cure for Parkinson's disease. In 2007 British regulators approved human animal hybrid creation to create new stem cell lines. And now this type of research is coming to California, with little fanfair.

...To see if abnormalities in neurotransmitter signalling also underlie autism, Miledi's team collected brain samples from six deceased autistic patients, aged eight to 39. They fused brain-cell membranes, which house neurotransmitter receptors, together with Xenopus egg membranes. As a control, they did the same thing with brain cells from patients with no history of mental disorder. ...

While some, like the Scottish Council on Human Bioethics, issued cautionary statements regarding this type of research, it would appear that most of the public goes along with this type of research, "if it might improve understanding of diseases." The Danish Council on Ethics has a nice summary of some of the issues involved, including whether certain rights would accrue to such chimeras, whether such creations could be owned, and whether they could be killed.

Evidently there have been chimeras produced in the U.S. for some time now, but ethical questions (other than public discussions regarding human cloning) have largely been ignored.

I'm not positive that I might not change my mind in the future, but as of now, I would definitely count myself in the camp of being against chimeras, whatever the purpose. While I am sure that Peter Singer would approve, as he sees no difference between humans and other animals, I see a lot of potential problems with blurring the lines of what is human and what is not.

Another thing that bothers me about this is that perhaps autistic humans were chosen to do this because they were viewed as diseased and damaged, and not quite human anyway. Therefore anything would be okay with such a population. This was never stated anywhere, but just a nagging little thought at the edge of my consciousness.

I don't think that "the ends justify the means" in the vast majority of circumstances. Thus I don't believe that the results of unethical studies should ever be published, or used by other researchers as a basis for their own work. Too many scientists forge ahead to be the first in their field, and don't stop to consider whether what they are doing is right or not. I think the least we owe ourselves and our descendants is a full and honest discussion of the ethical concerns of such research. Just because we can do something doesn't necessarily mean that we should.

Old Dog, New Tricks

photo credit-Avolore
creative commons license

Well, I did it today. I registered to go back to school.

One would think that after spending most of my adult life in either higher education or advanced training, and after reaching an age where I should be actively planning my retirement, I would have more sense than this.

Perhaps I am addicted to education. Or is it just Pomp and Circumstance?

Over the last 2 years my interest in bioethics has increased. I regularly attend and participate in a monthly ethics conference at my institution, and have done some reading on the subject. We have discussed such issues as the exhibit of human bodies in Body World, sham surgery, and the "Ashley Treatment". So I have decided to formally add some credentials to myself in the area of bioethics.

Rather than commit to a full Master's degree at this time, I am starting with a certificate program, in which I will take 4 Master's level 3 hour courses, followed by participating in a 5 day seminar in Chicago. If I like it (and still think it's worth the money), I can apply those courses towards a Master's degree in Bioethics, for which I would need a total of 30 hours of coursework, including a thesis.

I can't afford to take off work to do this (especially with the cost of college nowadays), so I am going to do this via an online program. So even though I work and teach about 70 hours/week, I am hoping that this won't interfere too much with my home life.

What it very well may interfere with is my blogging. Summer is kind of hectic around here, so I haven't been doing much blogging lately. But once I start school in August I suspect that my coursework may keep me offline a fair amount.

I've always felt that while blogging was good (both for me as well as for spreading a positive message regarding autism), that we were all most effective when we leveraged our connections on the net to do things in other venues.

I am hoping that my writing experience in this blog will assist me as I go back to school, and that my exposure to all of you will help me as I attempt to translate a philosophy of respect for all people back to the medical community, as well as applying that philosophy to ethical questions that occur.

So I am not closing down the blog, but don't be surprised if I am even more scarce around here once August rolls around. Know that I will often sneek peaks at your blogs, and even write some comments when I can.

Now, I wonder if I should get myself a cyber backpack to carry my cyber assignments in?

How Does Your Garden Grow?

A few short weeks ago it looked like this:


Now the first cherry tomatoes have come in:




With more on the way:


Some full size tomatoes:


Carrots:


Onions:


and Beans:


The pumpkins, watermelon, and cucumbers have spread all over the place, but no fruit yet. And unfortunately, after harvesting one early strawberry from the strawberry plants, no further fruit as of yet.

But we remain optimistic.

Practical Socialization

I have long felt that while supporting Buddy Boy in his socialization skills by taking him to socialization classes was a good thing, that he got just as much good (and perhaps more) from the times I have taken him to McDonald's Play Places. When I take him to a Play Place, I try to let him go out and negotiate for himself, just giving him some tips ahead of time, reviewing casually some things afterward, and intervening (and sometimes hightailing it out of there) only as necessary.

While Buddy Boy's great little surprise the other day is a "one off" for now (we're back to standard conversation mode), he did up and demonstrate a skill yesterday I haven't seen him do before.

We took our annual outing to our local park's carnival that they hold every year in June. We have to pass this fair getting to our house, so there's really no way that we can just forget about taking the kids.

Buddy Boy has always wanted to go on some of the "big kid" rides, and this year he's tall enough to qualify to ride. We went in the late afternoon. It was a pleasantly cool day for this time of year around here (about 76F/24C), and while there were some people there, there weren't a lot of older kids there yet (I imagine they all come out after dark, just like we did when we were young).



The first ride Buddy Boy wanted to go on was this one "The Egg". It's kind of like a ferris wheel, but you can lock the car so it goes upside down. Because of the way the seat belt is configured, they won't let you ride it alone. We happened to run into one of the counselors from his school, who was there with her daughter. We asked her daughter if she wanted to ride on that ride, and she said yes. So we had Buddy Boy ask her if she wanted to ride, and they rode it together.

Next Buddy Boy wanted to ride on the ride pictured up top that flips you upside down (over and over again-I think it's called "The Whiz"). This is neither my nor Liz's cup of tea, and again the ride would not let anyone ride in a car single. There was no one else waiting to ride, so we told him he could wait for someone else to come along who wanted to ride. Next came the part that surprised me.

Not wanting to wait all day to ride, and seeing a couple of older kids walking by, Buddy Boy started going up to them and asking them if they wanted to ride on this ride with him. I was flabbergasted. This was something I've never seen him do. This is the kid who doesn't know the names of most of the kids in his class (even by the end of the year), who I only extremely rarely see approach other kids at school functions and the playground, and hardly says a word if someone approaches him. Yet he initiated contact, made his wants known, and successfully persuaded another kid to ride with him on the ride (with the other kid supplying his own tickets-no bribe involved).

He not only did this once, he did it again when we returned to "The Egg" ride for another go.

Now Liz was not as impressed as I was. She quite rightly pointed out that these interactions were more in line with going up to a shop counter and asking for something (which he has done before), and not really actual give and take conversational socializing, making small talk and all. But I was impressed none the less.

I am reminded of the old joke that is often attributed to Winston Churchill:

Churchill: Madam, would you sleep with me for five million pounds?
Socialite: My goodness, Mr. Churchill... Well, I suppose... we would have to discuss terms, of course...
Churchill: Would you sleep with me for five pounds?
Socialite: Mr. Churchill, what kind of woman do you think I am?!
Churchill: Madam, we've already established that. Now we are haggling about the price.

The fact that (with sufficient motivation) Buddy Boy demonstrates that he'll initiate conversation with strangers (kids his own age, even-much harder for him than adults) gives me hope that he already has the essentials for achieving success in high school and beyond. I just have to help him identify the right motivation.

One other surprise. While I was getting him into bed he said "You know that Black girl that I rode the ride with. It was nice of her to ride with me. And she was kind of cute." I was amazed. Someone that wasn't blond? Who would of thought?

Planning Ahead

buy one of these here.


In looking thru my past posts, I realize that Buddy Boy and autism are the subject matter for the majority of my posts. Since autism is but a portion of our lives, I thought I might share a little story of something that happened with Sweet Pea yesterday.

Out of the blue, Sweet Pea asked Liz who picked out the stones (headstones) when you were buried. Now no one's died recently, and I don't think she's watched something about people dying lately (I don't think they kill off characters on the Cartoon Network). So I don't know where this came from. So Liz responded with our usual "Why do you ask?", to which Sweet Pea responded that she wanted to know whether you picked out your own or someone else picked it out for you.

Liz responded something to the effect that a person might make arrangements ahead of time to pick one out, but often the person's family picked out the stone for them.

"Well I'm picking mine out right now. I want a Princess stone."

I wonder if I should tell her that they can make headstones from pink granite?

Conversation

photo credit-antony_mayfield
creative commons license

So, we were all sitting and watching a video tonight from the library about slavery during the 1600's in America. It was really well done, and quite fascinating. Did you know that during this time period 20% of the population of New York was African-American? And that Carolina had twice as many slaves as there were whites? I never saw any of that in my history books in school.

Buddy Boy was doing what he usually does, which is add his own running commentary (actually, it's more like interjecting facts he knows-or thinks he knows-about the subject). At one point he says "Mom, I have to tell you what I was going to tell you about before". "Can it wait?" Liz asked. "No, I need to tell you right now." "Is this something I won't like?" (we've been working on trying to get Buddy Boy to filter out some of the naughty words he likes to repeat-usually silly stuff regarding genitals and potty humor). "No, you'll like it." "OK, what is it?" Liz asked. After a pause Buddy Boy said, "That's OK, I won't tell you now." "No, that's OK, (putting the video on pause) you can tell me". "No, mom, I'll tell you later." "Why don't you want to tell me now?"

"Because it doesn't have to do with what we're watching".

I was speechless. This is the kid who loves to ramble and free associate from one subject to the next, and seemingly randomly go back to something he was discussing 3 days ago, and has real problems with taking turns in a conversation. And he had stopped and considered that maybe it wasn't the most appropriate time to discuss something. I've never been aware that he's done that before! Ever!

I thought it was way cool. No out and out prompting, no modeling, just decided to do it himself, out of the blue.

After complimenting him on being so thoughtful, we had to find out what he so wanted to tell us. It had something to do with grapes.

Rivisitare

To help celebrate the inclusion of Autism Hub Bloggers at the conference starting today at the University of San Diego, Steve D of One Dad's Opinion has asked for people to revisit a favorite post that they have written in the past. For my part, I have selected this one, originally posted on February 25, 2007.


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On Raising Cowboys



...And them that don't know him won't like him
And them that do sometimes won't know how to take him
He ain't wrong he's just different
but his pride won't let him do things to make you think he's right...
------------------------------
from "Mama Don't Let Your Babies Grow Up to be Cowboys"
by Willie Nelson

So Yesterday I had occasion to drive 300 miles one way to another city for a function, then after 4 hours, drive back another 300 miles.

I was alone, and able to indulge some of my eclectic musical tastes. I ended up listening to some Cowboy Junkies, the Diner Junkies, and Willie Nelson (an ex-junkie).

Maybe I'm just picking up one of Krisina Chew's habits and seeing autism everywhere. But as I'm listening to Willie singing the above song I heard those lyrics, repeated the track again to make sure I heard them right, and the thought occurred to me, "I'm not raising a son with autism, I'm raising a cowboy".

And I thought (I do a lot of free association and just plain weird thinking while driving long distances alone) "I wonder if the world would understand my son better, and treat him better, if I just told them he was a cowboy?"

Cowboys have a long tradition in America, and despite a few people using the term "cowboy" in a negative sense when referring to President Bush, there is a long and deep tradition of positive attributes being attributed to cowboys. Mention being autistic, however, and there only seem to be negative stereotypes that come to most people's minds.

Cowboys are entrenched in the lore of the United States, with many of them acheiving legendary status.

Most cowboys were men, but some (like Annie Oakley) were female. Cowboys were (and are) generally people who don't talk much, and are rugged individualists. They tend to keep to themselves, and don't much care if others understand them or not.

Cowboys have a code of ethics that is looked up to so much that some have suggested a version of it be used to instill ethical business practices in individuals.

I could see it now. When the school calls to complain about Buddy Boy exhibiting some behavior that doesn't seem to fit the mold they want to put him in, I could just say something like "You don't understand, he's a cowboy." This would be all that I would have to say to convey to them that my son was different, and in a good way.

Rather than expecting him to conform to arbitrary rules they had set up, they would instantly understand (because of the shared cultural knowledge) that my son was indeed different, and was probably destined for greatness. As they had a genuine cowboy amongst their midst, they would fall all over themselvs making efforts to individualize their educational efforts, much as all of society caters to celebrities. They would also expect great things from him, and as many studies have shown, when teachers expect great things from students they tend to get them.

My apologies to any Europeans reading this. You'll have to get your own legendary figures to latch on to to get the schools (and society) to treat you and your kids better.

Mud Therapy

The school year started out great, but got a bit stressful at the end. Fortunately the corollary to "All good things must come to an end" is "All bad things must also come to an end". So the year ended, and we have been getting back on an even keel.

I am descended from a long line of Eastern European farmers. My ancestors were peasants that farmed the land in Europe, and one set of my Grandparents started out in this country as farmers in the middle of Wisconsin.

So working the earth is in my genes, and you would think it would be second nature to me. Unfortunately I have not had a garden in more than 25 years (probably closer to 30). But Buddy Boy (who wants to be a farmer) had been bugging me this winter to put in a garden this year. My sister (who used to live about a mile from us, but now lives about 350 miles (560 km) from us, had Buddy Boy and Sweet Pea assist her in putting in a garden a couple of years ago before she moved. Buddy Boy loved that, especially when they harvested their crop of corn and beans.



So I relented (I actually wanted to do it myself, but was afraid of disappointing Buddy Boy if we didn't succeed in growing anything). I figured even if our crops failed, it would be good therapy for all of us to put in a garden.

The first thing we needed to do was clear an area. We selected an area at the edge of our property, fenced it in (there are tons of rabbits around here), and began to clear the grass. The first thing we discovered is that although the area where we live was once supposedly an orchard, the land is pretty much an equal mixture of clay and rock. It took us the better part of 3 days just to clear about 100 square feet (9.29 square meters). I may not have gardened much lately, but I knew that this plot of ground was not going to grow much anytime soon (I was even surprised that the grass had grown as well as it did).


So after doing some reading online, talking to my sister, and getting a consult from Daisy at Compost Happens (hey, with a blog name like "Compost Happens" she has to know a lot, right?) I decided to break up the top layer of clay and build up a bed of about 4-5" (about 12 cm) of topsoil before planting anything. I also decided to get some stones from Home Depot and lay a walkway down the middle of the garden, to facilitate access for planting, weeding, and harvesting.

Once we mixed the topsoil in and spread it all out, it was time to get something to plant. I figured we'd have a better chance of getting stuff to grow if it was already a seedling, so off to the gardening center we went. We picked up some seedlings of two types of tomatoes, cucumbers, pumpkins, watermelon, sweet onions, peas, strawberries, and some type of herb that was supposed to attract butterflies. We also got some seeds for beans, carrots (I picked some stubby ones that were supposed to do better in clay soil), and broccoli.

The beans seemed to sprout up to 4 inches (10 cm) overnight. The carrots and broccoli have also started to grow, and we even harvested our first "crop", which consisted of one small strawberry that I had to divide between the two kids. We topped the garden off with "Mr. Sun", which Buddy Boy insisted we buy when we were at Home Depot. He's always been a sucker for inanimate objects with faces on them.

Although I think a synonym that should be listed for gardening is "weeding", it's been fun thus far, as well as therapeutic in helping us all work off some excess energy. And with the problem with salmonella in tomatoes, we might even have a cash crop on our hands!

A Great Father Dies

Tim Russert, 1950-2008

Tim Russert, known to most Americans as the host and moderator of NBC's "Meet The Press", died suddenly today. He was 58 years old.

He was an icon of American journalism, who asked tough but fair questions of politicians of all stripes. His interviews were always fair, and he never belittled or insulted the people he had on his show. That's pretty impressive, for someone who did it for almost 25 years.

I thought he was just a darn good journalist until I read a book he wrote, "Wisdom of Our Fathers". I received this book as a Father's Day gift two years ago. This was a follow on book to one he wrote two years earlier, entitled "Big Russ and Me". In this first book on fatherhood Russert talks about his own father, who was a sanitation worker and a truck driver, and what a great dad he was. The second book (which I received) stemmed from letters regarding fatherhood that Russert had received from readers of his first book. Russert also sprinkled in some stories regarding his relationship with his own son, Luke.

It was obvious from his treatment of the subject of fatherhood that Russert himself was doing a darn good job of being a father himself. Russert always sprinkled bits about his family into his show and interviews, and it was obvious that he placed great stock on being a good father. His son liked his dad so much that he had himself tatooed with his father and grandfather's name.

Fathers often are overshadowed in the parenting process by mothers (who are, admittedly, extremely important). I admired the way that Tim Russert reminded people that fathers are important, too. He served as a good role model for fathers everywhere. I am saddened by his passing.

Russert had just returned from a vacation in Italy with his family, which was to celebrate his son's graduation from college.

Buddy Boy's Home Photos

Buddy Boy successfully made his First Communion this year, which we considered a big accomplishment. His most prized gift came from his godfather, Uncle Dave. Uncle Dave got him what Buddy Boy's been campaigning for for quite awhile-a camera.

I've uploaded the first set of photos that I'm making public from Buddy Boy's first foray into photography. These are from around the house, most taken on the first day or two he had the camera. I didn't include ones he made of the family (sorry).

Later I'll upload some ones he took on vacation. In addition to the two shots here, the rest of the photos can be found on Flickr. Enjoy!