Monday, July 28, 2008

Friggin' Kite Eating Trees

I suppose everyone can relate to Charlie Brown. From the kite eating tree, to the losing-est baseball team, to Lucy pulling the football at just the last minute, we all get to feel that 'nothing's going right' feeling. Well, you are all just posers because, as the line in the X-mas special goes, "of all the Charlie Browns in the world, [I'm] the Charlie Browniest".
My wife asks me why I'm so cranky all the time. "Not right now, per se," she says "but just in general." I gave her one of those blank stares; of course I am cranky, it's one of those things I need to work on: temper and quick frustration threshold are two of my worst traits. " I don't get to have ANY fun, and even when I try, it turns into a disaster!" Then I proceeded into a tirade that I did not perceive to be all THAT funny, but she receives with convulsive hilarity:
"You wanna know why I'm so cranky? You wanna know?" I said in my Kramden-esque voice. I had purchased online last week what I thought was the perfect mid-summer game-booster, something called a Bax Stop, an inflatable back stop for the games the boys have in the cul-de-sac, a game that's combination, stick-ball, wiffle-ball and baseball. They use a big fat plastic bat and a tennis ball; but they always have to use a player as catcher; this inflatable contraption would have put an extra player on the field, and settled balls and strikes to boot. I would be hailed as the grand summer saver, making the summer classic...classic-er. The Bax Stop was not only an incredible bargain at less than half the price it normally sells for, it came with a bonus electric pump making it the deal of the year... as well as being the hit of our little world.
I would suspect you have an idea of where this is going. I inflated it fine, but I spent the better part of 1/2 an hour trying to figure out how to tie the net to the backstop, only to discover that I had missed a critical piece of string that 'tied' the whole thing together. 10 minutes later, the net intact, I make the grand presentation to the gang. Appreciative ooos and aaaahs in front of our driveway...just as I had planned. "Let's bring it over to OUR driveway and get a game started." one of the neighbor's kids said. My good feeling work done for the day, I retire to the garage to find a plumber's 'snake'; Liv has thrown an unidentified object into our toilet, and no amount of plunging has sped up the flow. I need the snake to see if I can push whatever it is through. Ultra-dad AND Bob Villa in one day...could it be possible?
10 minutes pass; no snake in sight. Then Dilan calls from the font door, "Daaaad? The Bax Stop's got a hole innit! I think Jason stepped on it." Across the street I go, with the insider info and accuse Jason without benefit of jury. He bursts into tears, a sure sign of a guilty verdict. Meanwhile, my once virile Bax Stop has become viagra-less; the boys had tried some duct tape, but the patient was not responding. Back to the backyard for the Bax Stop; I retrieve the only two bandages that come with the unit. I open the duct tape that was already's not looking good. A seam rip a centimeter long;. One patch and the medical students surrounding me proclaim "It's still leaking!" I put the second one on..."It's leaking on the OTHER side of the patch now!" Much as my medical knowledge hates it, in desperation I call for the duct tape (actually packing tape). Four strips later I declare the patient dead, with objections from the medical peanut gallery. Monday morning surgeons ensue detailing what we should have done, one asks "You gonna call the company? It's defective!" An hour ago, I was victorious in my Superdaddom; now I just get rid of the 'dad' part and that's how I felt.
Back to today, I keep throwing one liners at Linda, to continue her gasping for air in laughter. I realize that despite my nominal failure, I CAN make some good out of my tragedy. I renew my resolve; I CAN make some good this weekend (I WILL kick that football this time). I resume my search for the snake in the garage. I find lots of other fun things (two year old Easter candy, a pennywhistle etc) but no snake. I DO however find a reasonable facsimile: something I bought 4 years ago, a vent brush, for cleaning dryer vents. Right size good length...I'll give it a try. Unfortunately, the cord does not have a wire's hollow plastic. And in my bathroom, I have a brush eating toilet bowl. Hello Rotor Rooter? Bob Villa has eluded me again, replaced with Tim usual.
UPDATE...$147.00 later, the mystery object is discovered. A Dora truck was lodged in the bowl deposited by Liv during one of her disceet excursions into the bathroom. As our local Rotor Rooter rep said "Too small not to go down; too big to get through." At least I know that my efforts were in vain and we would have needed to call a plumber whether or not there was a brush stuck in the bowl. All the kids were certain that the Rotor Rooter truck in the front meant that Jason and Grant were visiting from TAPS.

Friday, July 25, 2008

One Step Up, Two Steps Back

I guess it's not that bad, it's more three steps up and one back or something like that. Oh wait, let ME take a step back. Grace has recently made some significant improvements in her behavior regarding patience and her ability to 'hold it together' when things don't exactly go her way. But last night my wife Linda sat me down and was very upset about the fact that Grace has been very echoic lately and not answering questions, but instead just repeating words back to us.

A month ago, she had, for the first time, SHOWN my wife where she had gotten hurt and had begun answering questions in more than one word answers and had not needed to be prompted. For those with kids not on the spectrum, you probably watched milestones like this just whiz by, like markers on a highway; for us though, these are milestones are more vertical in nature, like hitting the 10,000 ft marker on the side of a mountain. So, the fact that she had slid back to on these skills was quite disheartening.

It turns out that the teachers and aids, who have been doing a wonderful job at working her behavioral issues, had underestimated her abilities from a language perspective. Instead of pushing her for answers to questions, they had been prompting her so she had become 'prompt dependent'. For those on the planet Earth, that means that when the held up a ball, instead of saying "What color is this ball?" and waited for and even pushed for "The ball is blue", They would say 'Gracie, what color is the ball? Blue. What color is the Ball?" and then grace would answer one word: "Blue". This method is great when you are trying to get words out and building up the child's question and response, but if they're already past that, it brings them back to a simpler time.

Big todoo anyway, notes flying back and forth, they are going to quickly 'fade the prompt' and get her on track. Part of the issue with this school is that Grace is a little too high-functioning from a language and play area; her real issues are with socialization and transitions. Sometimes if you are not explicit with the teachers, they kinda revert to 'simpler time' and somewhat expect the child to be lower functioning than they are. We are still happy with the school but we are just frustrated that we are halfway through the 6 week session, and she'll be hard-pressed to get her 'non-prompted' abilities back by the end of the session. It's all about not regressing in the summer sessions, after all.

It just goes to show you how easy it is to not be coordinated between the schools, your therapists and your child's needs and abilities. It also shows how nutzo some of us parents get with the details. I'm not sure whether some 'normal' parents go nutzo on the details or maybe within the autism parents' circles some let it slide and some are nutzo. I guess I'm just glad that we caught it and we can do something about it...

Thursday, July 24, 2008

Of Course You Know, This Means War

That's the phrase from the old Warner Brothers Cartoons that came to my head when I read about this site:

Opposing Views Launches As A Debate Site Where Experts Go Head-To-Head

Getting average know-nothings to create content for your site is easy enough and well understood by now. But how do you get experts to create in-depth topic pages about the hot-button issues of the day, complete with videos, links, and healthy commenting? Russell Fine is trying to do that with Opposing Views, a site that launched a few hours ago. It pits experts against each other on topics such as the economy, global warming, health issues, and politics. "We are trying to create a site where people can get well-informed on a topic quickly," says Fine.
Opposing Views is an information portal disguised as a debate site. Experts debate hot-button issues, and readers can comment and vote on who they think is right.

And, of course one of the first debates is the vaccine/thimeresol/autism debate. Get your tickets, ladies and gentlemen, this should be an epic battle:

Have fun folks...

Monday, July 21, 2008

Tame the Savage Beast

I'm going to continue on a streak of two politically charged posts in a row, and attempt to assist in a groundswell to get the Michael Savage character off the nationally syndicated airways. If you haven't heard his comments, here is what he said on his radio show a few weeks ago:

SAVAGE: Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden ⎯ why was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], ‘I don’t know, the dust got me.’ ” See, everyone had asthma from the minority community. That was number one.Now, the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That’s what autism is.What do you mean they scream and they’re silent? They don't have a father around to tell them, “Don’t act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”Autism ⎯ everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said ⎯ “Don't behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That's what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.

Originally I thought, let it slide, he's a nobody looking for publicity. Then I found he is the third most listened to talk show host in the US. This guy has to get thrown out into the street. So we all started our letter writings to the various sponsors. I got to writing to Anheuser Bush and I got stuck:

Dear Sirs...nah that's sexist
To Whom it May concern:
As a lifelong consumer of your product...WAIT what am I? A confessed former underage drinker?
As a consumer of your product...nah, sounds like I'm drunk right now.
As a current user of your product...same problem.

I hate copying and pasting the form letter into these internet 'send us your comments' things, once they see that pattern aren't they going to just throw it into the virtual trashbin?

OK, here it is:

As a user of you product, I would like to call to your attention that one of your outlets for advertising, The Michael Savage radio show nationally syndicated has taken a severe and disturbing turn. Recently, Michael Savage saw fit to disparage all individuals suffering from the disorder autism, calling them everything from brats to idiots and claiming that parents of
autistic children are involved in a 'racket' to bilk the country out of services.Of course, if you ask people at your company with autistic children (there are statistically more than 1 out of 100) you will find that they are in serious need of help in their day to day lives, and these comments by Savage are not only hurtful to them personally, but also perpetuate a decades old prejudice
that will cause children who desperately need services to not receive them.

I implore you to reconsider advertising on his show. Realize that, with the rate of autism climbing from 1 in 150 (my state of NJ has an autistic rate of 1 in 94), he is offending at least 10 percent of the population indirectly or directly, as well as much of the rest of the population, especially those with disabled children. I trust that you will arrive at the right conclusion and
pull your advertising from the show, thank you for your consideration,
Father of two wonderful autistic children

I hope that we can create enough noise to get this guy thrown off the air. Apparently, he was thrown off of MSNBC a few years ago for attacking the gay community. Let's hope he's on the street in no time...

Wednesday, July 16, 2008

Is It Time for a Lunch Counter Sit in?

I'm not sure why this one got me so incensed. Maybe because I feel for the mother. Or I 'feel' something different toward the good 'ole boy Chief of Police (who apparently knows the family and the situation). Or maybe it's the 'we want our quiet enjoyment of our meal and no re-tard is going to disrupt that' attitude I get from the article. In any event, anyone want to carpetbag into Jackson, SC with me and do a good old fashioned sit in at the lunch counter to protest the treatment some get for 'not being able to control their kids?

Family ordered to leave restaurant because of crying child

JACKSON, SC (WIS) - At first, Gail Martin says she wasn't sure who was yelling at her to leave the Buckhead Café in Jackson. It turned out to be Jackson Police Chief Dennis Rushton, asking Gail and her family to leave.
"I didn't know what he was doing," Gail's daughter Lauren said.
The family was just about to order when 4-year-old Alyssa began crying; she suffers from autism.
Gail says Chief Rushton yelled across the restaurant again.
"He said, ‘You need to pick her up and you need to get out of here now,'" Gail said.
Lauren is upset with the chief.
"That was very mean to say -- just very mean," Lauren said.
The embarrassment was too much for Gail and her daughters, who soon left the restaurant.
"I wasn't embarrassed of Alyssa's behavior, I was embarrassed of the way it was handled," Gail said.
Chief Rushton would not make a statement, but he did say he felt Mrs. Martin's daughter was being extremely loud and bothering other customers.
Even though he knew the child was autistic, he said he did ask the Martins to leave.
Gail says she feels like Chief Rushton should have been more understanding about what was going on with her autistic daughter.
"We can't just lock them up, they have every right to be out in public like everyone else," Gail said.
Now Gail hopes her story will bring more awareness about autism.
"If it can happen in a small town in Jackson, it can happen anywhere," Gail said.
Chief Rushton says he is open to going through training through the South Carolina Autism Society to help him better understand the condition.
Rushton also says his police commissioner has invited the Martin family to meet with them at City Hall.
The Martins say they are open to meeting with the commissioner.

My favorites are the responses from the general public after the article:

As you can imagine, people have had plenty to say about this story.
Viewer Roger said, "The family should have known better than to take an emotionally disturbed child into a restaurant. When customers pay to enjoy a nice meal the last thing they want to endure is an uncontrollable child."

Please people! Learn how to control your kids and yourself. It is YOUR responsibility to keep your kids civil while in public. If you are unable to and fail to leave and just expect people to understand... you are a bad parent, bad citizen, and basically a bad person. Don't burden other people with your problems.

Let's take a different tack at this and see how the 'Cheif' would be viewed if say, a child with cerebral palsy in a wheel chair was dining at the same restaurant. Would it be right to tell the family to leave because the child was drooling or making patrons 'uncomfortable'? Of course not. What about a child or adult with Downs who was clearly mentally disabled... do we kick them out, Chief? Boy, what would you look like a day after the elections? I guess it's OK that because this child's specific disability can be construed as bad parenting, so it's OK to just override their civil rights and tell them to leave. Maybe an 'undesirables only' section, yea that's it! They can even just re-use the disabled wheelchair pictographs to easily depict those we don't want to see or hear.

We shall overcome...

Tuesday, July 08, 2008

Let's Talk About Insurance, Shall We?

Always a bad mistake to be tempted into reading AutismVox. Not because she doesn't have some of the most balanced, insightful and thought provoking things being written about autism in blogdom, of course she does; but simply BECAUSE they are insightful, balanced and yada yada, I then have to spend all my time thinking about that topic!

Well THIS ONE was no exception, because it's about one of my favorite rants: insurance coverage for autism services. We are roughly in the same position as Kristina/Charlie but a few years behind in that Liv is probably going to need services and assistance in some way for life, so the idea of 'medical necessity', when it comes to insurance coverage, comes into our vocabulary frequently. The idea of therapy, in the minds of an insurance company, is a repair/recovery-then-back-on-the-street sort of thing; physical therapy on a broken leg and get it back to working order in 6 months and they're done. But what if repair/recovery is not '90% mobility' definable? What if timetables of therapies are not measured in weeks and months, but months and years?

I really think we are at a crossroads of services for the disabled and who should pay for them. If you recall, the private sector predicted the end of civilization as we knew it when they were told what the Americans With Disabilities Act would really mean. "Making the country disabled-accessible would be cost prohibitive and would not float; the economy will sink, small business would cease to exist and the county's economy would wind up at the bottom of the fiscal ocean" according to those in business. Well, 15+ years later the dingy is still bobbing and we have an unprecedented awareness and diversity and access in the workforce and in public places. Well, OK, so it's not as rosy as all that, but going from nothing to a little is still unprecedented!

Not only has the private sector bore the burden of legislative disability access, but the public sector has as well, perhaps more, especially at the local school level. It has gotten to the point where not only are schools specializing their education for special needs kids, but they are providing therapies as well. No one in the late 70's would have expected their child to receive speech, physical or occupational therapy from a school system; today, it is commonplace and required. Again, rosy picture, thorny reality, but let's go with it.

So, here we all are at the crossroads of the next 'disability' intersection, that of neurological differences. Science is providing more detailed information about disorders and their potential therapies. Government is signing laws to have these disabilities provided for. Localities are trying desperately to provide these services. Parents are trying to fill in the gaps left in therapies that they see as still needed but not provided. And in the distance we see the devil incarnate in the form of the insurance industry quietly walking away from the intersection whistling and counting the souls he has stolen, looking over his shoulder to make sure no one's the wiser.

Don't get me wrong, I'm not one of those 'socialize medicine' types (well, actually, I am, but besides the point), but I just have this funny idea that insurance is there to protect me from devastating medical losses. Maybe I'm old fashioned, but I consider helping my child communicate and learn how to better use her body to be part of that protection; I'm sorry, but I don't buy that this is a cost that should be borne by society. From what I've heard, using the excuse that schools should be providing these types of services is illegal (citing from the law firm of Dewey, Cheatham and Howe which was recently bought out by the firm Burnham and Ruhn). But, behind closed doors, they are saying that this is society's burden, not theirs.

Now you know I'm no where near being a defender of insur-a, but maybe they DO have a point. We have insurance, schools, state and federal entities passing this very expensive hot potato around. If autistics are integrated into society through better therapies and services, who's the primary beneficiary? State and federal governments will benefit in the form of a more productive citizen. Families will also benefit because they will bear less of the support burden. So why should insurance get involved in this when they are not the beneficiaries? Let's leave the leg broken, let's not provide preventive checkups; let's not attempt to take people where they should or could be; let's leave all that up to the people and entities most impacted. Fact is that insurance bears a primary obligation to the insured and a secondary obligation to it's stockholders and not the other way around (at least in my socialistic mind). I know I'm straw-manning it a little here, but I just feel that insurance will do anything in their power for cost avoidance; if you don't believe that, your mom or your spouse probably deals with your insurer.

What do we do then? How do we weave this safety net with government and private sector thread to catch poor unfortunates like my family just trying to give my daughter the life she deserves? I haven't a clue, but if the past is any indication, this battle is over money so it's going to get bloody. The only question is whether it remains a guerrilla war, where insurance and governments silently cut and run and work the denial of services covertly; or whether we can drag this out into the light and have a proper fight.