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

photo credit-hjl
creative commons license

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
-
-
-
-
-
-
-
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

photo credit-kingnixon
creative commons license

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,

----------------------------

"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!"
-----------------------------------------

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.