I have nothing but admiration and sympathy for the people I know who are raising children with autism. In fact, they were the inspiration for the chapter I wrote about the subject. To them - and to all parents of children with autism - I apologize for any pain the out-of-context quotes from my book may have caused.
I can only imagine how upsetting reading the remarks excerpted from my upcoming book must be for any parent of a child with autism. All I can say is that the quotes from my book that caused so much pain were taken out of context and selectively edited.
It was never my intention to exploit the serious subject of autism. It was my intention to expose the adults in this country who seek to use any available medical avenue to justify their own failures. What I wrote was not directed towards children who have autism.
I do not say in the book - and I have never said - that autism does not exist. In fact, the chapter dealing with autism in my book discusses the struggle of close friends of mine to raise a child with autism.
As I’ve said before, taking one or two sentences out of context is unfair and misleading. Too often in this country, everything gets reduced to simple sound bites and very, very often those sound bites are not truly representative of an author or artist’s point of view.
Friday, October 31, 2008
Worth sharing... Denis Leary Apologizes
Another week is over...
It's almost 10 pm and Jacob is tearing around the house, jacked up on sugar. He had a good Halloween. Jimmy hates to trick-o-treat, so it is principally a Jacob holiday. Given that his birthday party is tomorrow, he is pretty much behaving like an overstimulated, insufferable twit at the moment. You can threaten to cancel the birthday, but after you have sent out the invites, momentum is not on your side. Do you really want to be known as the parent who called and cancelled her kid's birthday?
It is amazing when you can look at a calendar and see a two week holiday break coming in the not too distant future. I need it. Except for the part where I will have Jacob the whole time. I wish I could screw up the nerve to give him a lump of coal as an object lesson. My friend Carol tells me that there are good ages and bad ages with kids. Four was a bad age for Jacob. But four was also so three days ago! It's over! I want to wave a wand and say "You are a good boy now!" Why doesn't it work that way?
It is amazing when you can look at a calendar and see a two week holiday break coming in the not too distant future. I need it. Except for the part where I will have Jacob the whole time. I wish I could screw up the nerve to give him a lump of coal as an object lesson. My friend Carol tells me that there are good ages and bad ages with kids. Four was a bad age for Jacob. But four was also so three days ago! It's over! I want to wave a wand and say "You are a good boy now!" Why doesn't it work that way?
Happy Birthday Brandon! And Jacob too..
My nephew Brandon, now Big Poppa, had a birthday the day before Jacob's. October always goes by in a blur. Brandon's grown, Jacob's getting there, and I feel old.
Wednesday, October 29, 2008
Well...
The polyp was an adenoma, which is considered precancerous. It is the same variety that has been removed from my sister. I am now on a three year cycle for colonoscopies. The problem is my side still hurts, so now we look at the ovaries. I have been bad about getting regular paps, so I am nervous yet again. It doesn't end. I guess the good thing is that I have a little pain and nothing else. No nausea, nothing weird with my periods, nothing else... just this pain. But I am anxious... and resolute to take better care of myself after this. I have let things go in all the chaos of taking care of Jimmy - feeling like I can't use a sick day to get to the doctor to get a regular check up for fear of a kid getting sick or Jimmy needing an appointment. I guess I can't afford to be not be here for them. I have a pap and a pelvic ultrasound scheduled next Wednesday. Maybe we can put this to bed then.
Today is Jacob's fifth birthday. I would be more celebratory, but it has been a long, stressful day and the boy is behaving like a heathen.
Today is Jacob's fifth birthday. I would be more celebratory, but it has been a long, stressful day and the boy is behaving like a heathen.
Tuesday, October 28, 2008
A Powerful Essay
About why Sarah Palin might not be as good a friend to special needs families as she thinks. I won't vote for her, but I hope the attention that has been given to the needs of families of children with lifelong disabilities doesn't end on November 5th.
Monday, October 27, 2008
HB1588 - was HB83....
Less than a month.
That’s how much time remains until the Virginia Mandated Benefits Commission (MBC) announces its recommendation regarding House Bill1588 at their November 19th meeting.
Once it is passed by the Virginia legislature, HB 1588 will provide up to $36,000 a year in coverage for life-changing treatments, including applied behavior analysis, for our children with autism. But first, the bill must receive a favorable recommendation from the MBC!
Momentum is on our side. In recent weeks, this historic piece of legislation has been reported on by The Washington Post as well as by Dr. Sanjay Gupta on CNN. Even so, HB 1588 will not pass unless you contact the legislative members of the MBC with the following message:
Autism is treatable. Insurance should cover treatment. Virginia families need help now!
HOW CAN YOU HELP?
LIGHT UP THE PHONE LINES! Over the next three weeks, it is crucial that every legislator who sits on the MBC hear this clear message over and over: Autism is treatable. Insurance should cover treatment. Be polite and persistent. Ask them to say “yes” to our children (who so often hear the word “no”) and to HB 1588.
The Commission Members are:
Delegate Clay Athey - (540) 635-2123
Delegate Tim Hugo - (703) 968-4101
Delegate Terry Kilgore - (276) 386-7011
Delegate Donald Merricks - (434) 836-3370
Senator George Barker - (703) 303-1426
Senator A. Donald McEachin - (804) 226-4111
No matter what district you live in, please contact all of these legislators. If you do happen to live in one of their districts, and you can find out if you do right here, call them again tomorrow and next week and the following week. The voices of their constituents are the ones that will most effectively convince them that this is the only solution to this heartbreaking situation. Store their numbers in your cell phones, speed dial if necessary! They must hear from you over and over during the next three weeks.
That’s how much time remains until the Virginia Mandated Benefits Commission (MBC) announces its recommendation regarding House Bill1588 at their November 19th meeting.
Once it is passed by the Virginia legislature, HB 1588 will provide up to $36,000 a year in coverage for life-changing treatments, including applied behavior analysis, for our children with autism. But first, the bill must receive a favorable recommendation from the MBC!
Momentum is on our side. In recent weeks, this historic piece of legislation has been reported on by The Washington Post as well as by Dr. Sanjay Gupta on CNN. Even so, HB 1588 will not pass unless you contact the legislative members of the MBC with the following message:
Autism is treatable. Insurance should cover treatment. Virginia families need help now!
HOW CAN YOU HELP?
LIGHT UP THE PHONE LINES! Over the next three weeks, it is crucial that every legislator who sits on the MBC hear this clear message over and over: Autism is treatable. Insurance should cover treatment. Be polite and persistent. Ask them to say “yes” to our children (who so often hear the word “no”) and to HB 1588.
The Commission Members are:
Delegate Clay Athey - (540) 635-2123
Delegate Tim Hugo - (703) 968-4101
Delegate Terry Kilgore - (276) 386-7011
Delegate Donald Merricks - (434) 836-3370
Senator George Barker - (703) 303-1426
Senator A. Donald McEachin - (804) 226-4111
No matter what district you live in, please contact all of these legislators. If you do happen to live in one of their districts, and you can find out if you do right here, call them again tomorrow and next week and the following week. The voices of their constituents are the ones that will most effectively convince them that this is the only solution to this heartbreaking situation. Store their numbers in your cell phones, speed dial if necessary! They must hear from you over and over during the next three weeks.
I still love live music...
The Killers are coming to the Patriot Center January 28th. I have to figure out what day of the week that is. It is very tempting. 2009 will be a year of concerts. Depeche Mode has an album coming out in March and should be touring by summer. Now if the Dixie Chicks would hit the road...
Jimmy is sacked out. I think I am going to join him.
Jimmy is sacked out. I think I am going to join him.
Sunday, October 26, 2008
Saturday, October 25, 2008
I need to go to bed...
But the UFC is on.
While DH went to Maryland today, I took the boys to the city's Fall Festival. I had to use the stroller, which I hate. I have to when it is just me with both of them. Jimmy needs to be contained to some degree (though there are moments I long to have Jacob contained as well) - it also gives him a place to hide when the environment becomes an assault on the senses. If it is too loud or too bright, he will pull the canopy down and just sort of hang out. Both spent some quality time in the moonbounce and Jacob did every arts and crafts project available. Among them, Jacob discovered the joys of spin art today. He loved it. I tried to get Jimmy to put the sticky foam pieces on the pumpkin. He just wanted to stick them on each other. What was nice is that both boys are so well known to the people at Parks and Rec that they help me out when I am at an event. I actually get to have conversations with adults because someone is entertaining Jacob. It is pretty fabulous. I appreciate the little things - time alone, conversations about something other than birthday parties - so much.
We have session tomorrow morning. DH's parents are coming, so I get to take Jimmy to his outings without the distraction of Jacob. Given that Jacob is still up, I don't think he will even notice me leaving.
While DH went to Maryland today, I took the boys to the city's Fall Festival. I had to use the stroller, which I hate. I have to when it is just me with both of them. Jimmy needs to be contained to some degree (though there are moments I long to have Jacob contained as well) - it also gives him a place to hide when the environment becomes an assault on the senses. If it is too loud or too bright, he will pull the canopy down and just sort of hang out. Both spent some quality time in the moonbounce and Jacob did every arts and crafts project available. Among them, Jacob discovered the joys of spin art today. He loved it. I tried to get Jimmy to put the sticky foam pieces on the pumpkin. He just wanted to stick them on each other. What was nice is that both boys are so well known to the people at Parks and Rec that they help me out when I am at an event. I actually get to have conversations with adults because someone is entertaining Jacob. It is pretty fabulous. I appreciate the little things - time alone, conversations about something other than birthday parties - so much.
We have session tomorrow morning. DH's parents are coming, so I get to take Jimmy to his outings without the distraction of Jacob. Given that Jacob is still up, I don't think he will even notice me leaving.
Thursday, October 23, 2008
Mental Health Day
Well, today was supposed to be the day I was going to get my fence. I think today is the day I will set it up, but... I kept the day off because I had a million things to do. I am sitting in the Dodge dealership's service waiting room to get my turn signal fixed. I have a list of ten things to do, all before 4:30. I get so little done on the weekends because of the kids. I never get caught up.
Jimmy is doing pretty well. Jacob's been the battle lately, especially with the bedtime issue. I am spoiled by Jimmy's medication schedule. I have not had to fight the bedtime battle in years with him. Jacob, he just wants to stay up. And I can't parent him via pharmacology - he needs to go to bed earlier and not fight every single time. Because he goes down so late, he is such a pill in the morning.
*Big sigh*
I have too much to do to be waiting here. Please hurry up with my car!!!
Jimmy is doing pretty well. Jacob's been the battle lately, especially with the bedtime issue. I am spoiled by Jimmy's medication schedule. I have not had to fight the bedtime battle in years with him. Jacob, he just wants to stay up. And I can't parent him via pharmacology - he needs to go to bed earlier and not fight every single time. Because he goes down so late, he is such a pill in the morning.
*Big sigh*
I have too much to do to be waiting here. Please hurry up with my car!!!
T, Click here...
New Duffy song... love it.
Wednesday, October 22, 2008
Proof..
That...
1. I am a nerd...
2. That I am official old...
All because I got this reference.
1. I am a nerd...
2. That I am official old...
All because I got this reference.
Moveon.org needs a little less free time..
I am on Moveon.org's mailing list from the last election cycle. Apparently they are customizing their guilt...
Hey T, want one?
Hey T, want one?
Tuesday, October 21, 2008
Happy Birthday Grandpa Bob!!!
Happy birthday Daddy! I can't believe you are 67.
Sunday, October 19, 2008
IHOP today...
Though the kitchen was slow (painfully so), our server recognized us as the regulars we are. I guess all the servers know what Jimmy is there to work on at this point - she commented on the improvement that he has made in getting through meals in the restaurant. And he has - though he still requests McDonalds, his transitions into IHOP are much better. Less crying and jumping around while he waits for his food.
The Target part of the outing is improving as well. Reduced elopement, no meltdowns over the DVDs. He started at ten minute visits, stepped up to 15, and now he is headed for 20 minute visits. No more all over the store, no more running, no more carrying him out when he can't have twelve copies of Basic Instinct because he likes the logo on the box.
Big or small, improvements always improve the quality of his life and mine as well.
CNN article on HB83
I love to see national coverage being given to the insurance issue. It would be such a benefit to Jimmy to have the habilitative services he gets like ABA covered by health insurance. He gets a very minimal amount, but he has made such amazing strides with it.
Parents press for autism insurance coverage
By Val Willingham
CNN Medical Producer
POTOMAC FALLS, Virginia (CNN) -- Parents of children with autism often say it's like being on a roller coaster 24 hours a day. And the ticket for the ride is jaw-droppingly expensive.
The monthly cost of Ethan Nunez's autism therapies is more than his family's income, says his mom, Carol.
A family's lifetime costs for caring for a child with autism can reach as high as $5 million, according to the Autism Society of America. Each month, parents report they pay thousands of dollars for treatment and therapy. And in most cases, insurance, even good insurance, won't cover all of the fees.
Many families are triple-mortgaging their homes, taking second and third jobs, even living with other family members, just so they can provide the care their children so desperately need. Some even have to choose between their child's development and keeping their homes.
For Carol and Rick Nunez of Potomac Falls, Virginia, the stack of bills piled up on the dining room table is a brutal reminder of their reality. The Nunezes, parents of two boys, were introduced to autism when their younger son, Ethan, was found to have the condition two years ago.
In order to provide the best care, Carol Nunez went to work full time and Rick Nunez stayed at home, providing 24-7 watch over Ethan. Although she has a good job in sales, the bills still amount to more than the family's monthly income. Costs for Ethan's applied behavior analysis, a relatively new therapy that has passionate advocates as well as critics, can run up to thousands of dollars a week, not including the cost for speech therapy, his medications and special schooling.
Carol admits it's tough. "It's been extremely expensive," she said. "Between ABA therapy, the accommodations we had to make to the house, the special material we have to give him, it just adds up."
But there is hope. A bill being considered by Virginia's General Assembly would require insurance companies to cover medical costs to treat autism. Just last month, Ethan, along with his parents and other Virginia families with autistic children traveled to Richmond, Virginia, to testify in favor of House Bill 83. The testimony was emotional, with parents, at times pleading from the podium for more financial relief.
Casandra Oldham, who has two children with autism, told legislators her family's money is so tight that many times she and her husband have to decide which child gets care first.
"Do I help both children?" she asked. "Or do I help the one that needs it the most? Help the one that will go the furthest? It's gut-wrenching."
Over the past few years, parents across the country have pushed states including Pennsylvania and South Carolina to pass mandates similar to the one being considered in Virginia. Virginia's bill would put a cap of $36,000 per child per year. Other states have capped care at $50,000. But the insurance industry warns these mandates could lead to higher premiums.
"We oppose the idea of mandates in general because we think in the end what happens is that health care is less affordable and less accessible when mandates are imposed," said Susan Pisano, spokeswoman for America's Health Insurance plans.
But many parents of children with autism say it's time to stand up for their kids. They want the insurance industry to realize that autism is a medical issue that requires a large range of expensive treatments in order to assimilate their children into mainstream life and many believe paying higher insurance rates is worth it.
The key service mandated in the Virginia bill and in many of the bills already passed across the country is applied behavior analysis. ABA uses educational techniques to change certain antisocial behaviors in autistic kids. By working with these children on a one-on-one, daily basis, therapists can increase children's skills in language, play and social interaction. They can also help them get over behavior that interferes with learning. Much of the therapy is repetitive in nature, which is why sessions need to be ongoing, without interruption.
But it's controversial. Some health plans consider it experimental or say it is not medically necessary. But many experts say that ABA does show promise, especially in children whose autism was diagnosed at an early age. According to the Kennedy Krieger Institute in Baltimore, Maryland, a highly respected autism research and treatment center, studies have shown 60 percent of high-functioning children can lose their diagnosis of autism by age 8 by using ABA.
ABA is intense, requiring 40 hours of therapy a week. which can cost up to $50,000 a year. Some therapists support it, but others don't. Yet parents say they should be able to give their children any treatment they feel works and not be socked with astronomical medical bills.
For now it's a wait and see for the Nunezes and other Virginia families. Even though the bill has backing from the House and now the Senate, the General Assembly doesn't convene until January.
Till then, the bills on the Nunez dining room table will continue to pile up. It's a pile they know they won't be able to turn their back on.
Parents press for autism insurance coverage
By Val Willingham
CNN Medical Producer
POTOMAC FALLS, Virginia (CNN) -- Parents of children with autism often say it's like being on a roller coaster 24 hours a day. And the ticket for the ride is jaw-droppingly expensive.
The monthly cost of Ethan Nunez's autism therapies is more than his family's income, says his mom, Carol.
A family's lifetime costs for caring for a child with autism can reach as high as $5 million, according to the Autism Society of America. Each month, parents report they pay thousands of dollars for treatment and therapy. And in most cases, insurance, even good insurance, won't cover all of the fees.
Many families are triple-mortgaging their homes, taking second and third jobs, even living with other family members, just so they can provide the care their children so desperately need. Some even have to choose between their child's development and keeping their homes.
For Carol and Rick Nunez of Potomac Falls, Virginia, the stack of bills piled up on the dining room table is a brutal reminder of their reality. The Nunezes, parents of two boys, were introduced to autism when their younger son, Ethan, was found to have the condition two years ago.
In order to provide the best care, Carol Nunez went to work full time and Rick Nunez stayed at home, providing 24-7 watch over Ethan. Although she has a good job in sales, the bills still amount to more than the family's monthly income. Costs for Ethan's applied behavior analysis, a relatively new therapy that has passionate advocates as well as critics, can run up to thousands of dollars a week, not including the cost for speech therapy, his medications and special schooling.
Carol admits it's tough. "It's been extremely expensive," she said. "Between ABA therapy, the accommodations we had to make to the house, the special material we have to give him, it just adds up."
But there is hope. A bill being considered by Virginia's General Assembly would require insurance companies to cover medical costs to treat autism. Just last month, Ethan, along with his parents and other Virginia families with autistic children traveled to Richmond, Virginia, to testify in favor of House Bill 83. The testimony was emotional, with parents, at times pleading from the podium for more financial relief.
Casandra Oldham, who has two children with autism, told legislators her family's money is so tight that many times she and her husband have to decide which child gets care first.
"Do I help both children?" she asked. "Or do I help the one that needs it the most? Help the one that will go the furthest? It's gut-wrenching."
Over the past few years, parents across the country have pushed states including Pennsylvania and South Carolina to pass mandates similar to the one being considered in Virginia. Virginia's bill would put a cap of $36,000 per child per year. Other states have capped care at $50,000. But the insurance industry warns these mandates could lead to higher premiums.
"We oppose the idea of mandates in general because we think in the end what happens is that health care is less affordable and less accessible when mandates are imposed," said Susan Pisano, spokeswoman for America's Health Insurance plans.
But many parents of children with autism say it's time to stand up for their kids. They want the insurance industry to realize that autism is a medical issue that requires a large range of expensive treatments in order to assimilate their children into mainstream life and many believe paying higher insurance rates is worth it.
The key service mandated in the Virginia bill and in many of the bills already passed across the country is applied behavior analysis. ABA uses educational techniques to change certain antisocial behaviors in autistic kids. By working with these children on a one-on-one, daily basis, therapists can increase children's skills in language, play and social interaction. They can also help them get over behavior that interferes with learning. Much of the therapy is repetitive in nature, which is why sessions need to be ongoing, without interruption.
But it's controversial. Some health plans consider it experimental or say it is not medically necessary. But many experts say that ABA does show promise, especially in children whose autism was diagnosed at an early age. According to the Kennedy Krieger Institute in Baltimore, Maryland, a highly respected autism research and treatment center, studies have shown 60 percent of high-functioning children can lose their diagnosis of autism by age 8 by using ABA.
ABA is intense, requiring 40 hours of therapy a week. which can cost up to $50,000 a year. Some therapists support it, but others don't. Yet parents say they should be able to give their children any treatment they feel works and not be socked with astronomical medical bills.
For now it's a wait and see for the Nunezes and other Virginia families. Even though the bill has backing from the House and now the Senate, the General Assembly doesn't convene until January.
Till then, the bills on the Nunez dining room table will continue to pile up. It's a pile they know they won't be able to turn their back on.
Saturday, October 18, 2008
Blah
Had a nice afternoon on the reference desk. When I wasn't answering patron questions, I caught up on my claims for the flexible spending account, bills, coupons, etc... Mundane stuff is nearly impossible to do at home. I have called five times to check on them - Jimmy ate half a large pizza. He never pounds food like that. Maybe he is hitting a growth spurt. The only thing I really failed to do was to catch up on my e-mailing... to Amy and T, principally. I miss them both a lot. One lives an hour away and the other is now in Wyoming and I see each about the same amount - never. I really need to work on that...
*Sigh*
Friday, October 17, 2008
Jimmy update...
He is asleep on the couch. He is doing fairly way... it's sort of up and down with him. He will have a good day and then the next, he is slapping people. He will be happy then will be screaming and hitting himself. I wish I understood why he is the way he is. It's like he has no impulse control. Children grow into that as they get older. Maybe Jimmy never will.
The moments where he is sweet and sedate vastly outnumber those where he is coming unglued and the world is falling apart. I think the problem is when things become undone, it increasingly becomes overwhelming. He is bigger, stronger, more emotional, more combative. It is harder for us, harder for Jacob especially. When he was singing earlier he got worried that Jimmy couldn't stop singing, that he kept singing the same thing over and over, that he could not get Jimmy to sing a whole song with him. He rather sad, actually.
Jimmy still has no one-on-one aide. It's been a month since FAPT. 60 days from now we go back and I am beginning to think that we may not have a one-on-one, save those few days a few weeks back. I am sort of glad that we don't have more in-home. Yes, another three hours would help, but it is so constricting to our schedules. I don't think I would balance any more successfully. I have already signed Jacob up for Biddy Ball and will likely be signing him up for swim lessons tomorrow while I am over at Mason in Manassas. He is entitled to have his own interests too. He also has his own therapy, though his is only 45 minutes a week (as opposed to the hours on end his brother's behavioral therapy takes up.)
It's all venting though. Jimmy is sleeping next to me right now on the sofa. He is truly the sweetest, most beautiful boy ever.
The weekend...
One desk shift at Mercer (I miss GMU) on Saturday and the UFC that night. Sunday brings another three hours of therapy for Jimmy and a lot of laundry in the afternoon. Should be a decent weekend.
Jimmy is singing to himself on the couch, so I am going to go join him.
Thursday, October 16, 2008
Okay, don't call Denis Leary, just e-mail him...
This was posted as a comment as response to offering up his foundation's phone number.
"I'm the Operations Manager at the Leary Firefighters Foundation and I also am appalled by Denis idiot remarks. I appreciate that you want him to hear your comments, but calling the office isn't the best way-- I've encouraged all callers to go to our website or email directly to info@learyfirefighters.org and I am printing up all the emails and giving them to his assistant. The phone call will only get to me and I'm with you on this-- please email so Denis will see your comments and not have to hear them second hand. Thanks for posting this, and i'm sorry we even have to go there!!"
Thanks for the response, Mardi. I will be sending an e-mail. I am inviting Denis Leary over to babysit for a couple of hours. If he takes me up, maybe him explain the whole Bill Hicks thing to us as well.
"I'm the Operations Manager at the Leary Firefighters Foundation and I also am appalled by Denis idiot remarks. I appreciate that you want him to hear your comments, but calling the office isn't the best way-- I've encouraged all callers to go to our website or email directly to info@learyfirefighters.org and I am printing up all the emails and giving them to his assistant. The phone call will only get to me and I'm with you on this-- please email so Denis will see your comments and not have to hear them second hand. Thanks for posting this, and i'm sorry we even have to go there!!"
Thanks for the response, Mardi. I will be sending an e-mail. I am inviting Denis Leary over to babysit for a couple of hours. If he takes me up, maybe him explain the whole Bill Hicks thing to us as well.
Wednesday, October 15, 2008
OMG!!!! They are talking autism in tonight's debate!!!
Validation for those of us who have the 1 in 150 children afflicted with this disability!!! Even a brief mention...
I am noting that McCain mentioned it too, but I still dispute the validity of Sarah Palin as an advocate for special needs families. But I am thrilled McCain brought it up and that Obama shared his ideas too.
Oooh, I hope that someone puts this on YouTube.
Denis Leary's Press Release
He is complaining about the world being reduced to soundbites when he calls his chapter "Autism Schmautism." What did Leary think would come from a title like that? I'll read the book if I see it in the library. Forgive me I don't run out to buy and a copy and line his pockets in support of his seemingly hateful comments.
"The people who are criticizing the "Autism Schmautism" chapter in my new book "Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid" clearly have not read it.
Or if they have, they missed the sections I thought made my feelings about autism very clear: that I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.
The point of the chapter is not that autism doesn't exist -- it obviously does -- and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know.
The bulk of the chapter deals with grown men who are either self- diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.
Of course, this entire misunderstanding can be easily avoided simply by doing one thing -- reading the book.
Taking one or two sentences out of context -- especially when it involves an entire chapter devoted to the subject -- is unfair and ill-advised.
Too often in this country, everything gets reduced to simple sound bites and very very often those sound bites are not truly representative of an author or artist's point of view.
Please give me the benefit of the doubt by reading all of what I wrote before attacking me."
"The people who are criticizing the "Autism Schmautism" chapter in my new book "Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid" clearly have not read it.
Or if they have, they missed the sections I thought made my feelings about autism very clear: that I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.
The point of the chapter is not that autism doesn't exist -- it obviously does -- and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know.
The bulk of the chapter deals with grown men who are either self- diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.
Of course, this entire misunderstanding can be easily avoided simply by doing one thing -- reading the book.
Taking one or two sentences out of context -- especially when it involves an entire chapter devoted to the subject -- is unfair and ill-advised.
Too often in this country, everything gets reduced to simple sound bites and very very often those sound bites are not truly representative of an author or artist's point of view.
Please give me the benefit of the doubt by reading all of what I wrote before attacking me."
If you are concerned by Denis Leary's comments...
Call his Leary Firefighters Foundation at (212) 343-0240. Denis Leary probably won't change his mind, but I am going to still call and see if I can invite him to come and babysit. Probably would enlighten him a bit.
Denis Leary Slams Autism as a Joke
Pretty much on par for what I expect from Denis Leary, who has stolen all of his best material from the late Bill Hicks.
"DENIS Leary should brace himself for hate mail from the parents of kids diagnosed with autism.
In his new book, "Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid," the joke-slinging "Rescue Me" star writes about the brain disorder:
"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
The Autism Society of America responded: "For Mr. Leary to suggest that families or doctors conspire to falsely diagnose autism is ridiculous . . . [His] remarks reflect the same misconceptions of autism being caused by bad or unemotional parenting that were held over 50 years ago.""
"DENIS Leary should brace himself for hate mail from the parents of kids diagnosed with autism.
In his new book, "Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid," the joke-slinging "Rescue Me" star writes about the brain disorder:
"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
The Autism Society of America responded: "For Mr. Leary to suggest that families or doctors conspire to falsely diagnose autism is ridiculous . . . [His] remarks reflect the same misconceptions of autism being caused by bad or unemotional parenting that were held over 50 years ago.""
I Survived...
I am alive. I came out of sedation okay, just a little teary. I was jolted back to consciousness when I heard the word polyp. I don't know if they were talking about it or I asked about their findings in my haze, but that was the word I sort of feared. In the past two years, they have found six precancerous polyps in my younger sister in two separate exams. My last exam was clean, so I really was hoping I was going to dodge the bullet of genetics and find an ulcer or something.
That was not to be. I am extremely sore because they took quite a few biopsies to continue to look for the source of my discomfort, more likely related to something in the lining of my colon like microbial colitis or irritable bowel syndrome. They will also attempt to determine if Miss Pretty Polyp is malignant or benign. So instead of answers, I get another two weeks to wait.
Intellectually, I understand statistics are in my favor regarding whether what they find is cancer, even with my family history. Emotionally, it's a hell of thing to wait on. I am Mrs. Worse Case Scenario and a tad bit of a Drama Queen. In my mind, the worst thing they could have found today was a polyp. They did. It sucks.
That was not to be. I am extremely sore because they took quite a few biopsies to continue to look for the source of my discomfort, more likely related to something in the lining of my colon like microbial colitis or irritable bowel syndrome. They will also attempt to determine if Miss Pretty Polyp is malignant or benign. So instead of answers, I get another two weeks to wait.
Intellectually, I understand statistics are in my favor regarding whether what they find is cancer, even with my family history. Emotionally, it's a hell of thing to wait on. I am Mrs. Worse Case Scenario and a tad bit of a Drama Queen. In my mind, the worst thing they could have found today was a polyp. They did. It sucks.
Still up... part 2
Yup, still going... um, strong. I am supposed to get up in an hour and a half to start to get the kids ready. :(
Oh, and Jimmy is up now too.
Tuesday, October 14, 2008
Still up...
Everyone else is asleep but me. I am expecting I will have to take the last dose of medication. I am hungry, tired, and bloated. If they can't tell me tomorrow what is wrong with me as a result of this test, I am going to be really upset. Unrealistic expectation... perhaps. I am just cranky right now.
This is not fun...
The really sad thing is even if they find nothing, I have to go back every few years for the rest of my life for colonoscopies because my grandmother had colon cancer. Then again, it is better than cancer.
Jimmy is being a little angel through my (relatively mild) suffering. Jacob is attempting to ensure that he gets no birthday party. And my mom is here - she will be attempting to hook me on Dancing With the Stars this evening.
Monday, October 13, 2008
I am heading out the door...
To get Depends at my mother's request. For me. For tomorrow.
Fun.
Two days and counting...
I get my colonoscopy in two days - Wednesday! My stomach was killing me today. I move and my abdomin hurts. It is pretty miserable. I want to leave with whatever is bothering my stomach removed and a nice prescription after all this.
That drama notwithstanding... wait, the drama never ends around here. At least the boys are laughing at the moment - Yin Yang Yo is on.
Sunday, October 12, 2008
Weekly Update
I have been really behind with a good many things in life, but I need to update - our fence did finally get approved. I am still thinking about pursuing the HUD complaint simply because the interpretation of the Fair Housing Act that the CAI uses (the big management association) states that requests like ours fall outside the typical HOA/ARB processes since the need was to accommodate a disability. I am going to press on to ensure that no family with a pressing need has to jump through those hoops in Blooms Crossing ever again.
We had a decent Sunday outing. My mother-in-law came along - last minute arrival so the guys could work on the basement. Jimmy did fairly well at IHOP and actually walked away from the DVDs at Target without going nuclear. My day is over all too quickly, as I am off to bed. But I have a little midweek break - the prep for these things is always worse than the actual exam, so Tuesdays going to suck. Hopefully I will be able to enjoy a nice late breakfast Wednesday morning!
More later...
Me and Urijah
Not the greatest pic of me, but far from the worst. I am actually leaning in because he is a little shorter than me, it's hot, blah, blah, blah. But it's a pic. And Urijah was such a sweetheart!
Saturday, October 11, 2008
It's late...
The event was a lot of fun. Live MMA is an amazing rush. I have the benefit of getting better seats than most people (sitting there with my laptop and posting away), but it is a nice break to get out. Of course, therapy will come early tomorrow for Jimmy. But it does every Sunday.
Speaking of Jimmy... I looked over tonight and saw our video camera. I never considered posting videos of some of his quirkier behavior, but I think that I will begin to play around with it. Would be kind of fun, I think...
Speaking of Jimmy... I looked over tonight and saw our video camera. I never considered posting videos of some of his quirkier behavior, but I think that I will begin to play around with it. Would be kind of fun, I think...
Where in the world is Rachel tonight?
Cage side at the Patriot Center, doing a play-by-play for DH's website. Already met Carlos Condit and Urijah Faber, fairly well known fighters in the world of MMA. I always feel a little guilty leaving home, but I needed to get out. :)
Getting by...
It has been a long week. Jimmy has recovered from his ear infection. Jacob has a girlfriend (DH teasing him about it prompted the "wrong daddy" comment), though he certainly doesn't want to admit. She sent home artwork with him this weekend from school. Jacob used an entire roll of scotch tape to put in on the wall. Of course, Jimmy tore it down. Ugliness ensued.
My colonoscopy is next week, which is a huge relief. A friend point out that I have been waiting awhile for this. I certainly have. The pain has been worse the past few days, so I am hopeful that this will be diagnosed and treated this week. I don't want to wait much more - I am pretty miserable.
In the good column, I caught up on my sleep last night - I was out by 8:30. I am covering an MMA event tonight at the Patriot Center with DH and another friend from Ocean City. It should be fun - and Uriah Faber will be there. A great fighter, but also very cute. Makes me feel like a dirty old woman!
War Cougars!
My colonoscopy is next week, which is a huge relief. A friend point out that I have been waiting awhile for this. I certainly have. The pain has been worse the past few days, so I am hopeful that this will be diagnosed and treated this week. I don't want to wait much more - I am pretty miserable.
In the good column, I caught up on my sleep last night - I was out by 8:30. I am covering an MMA event tonight at the Patriot Center with DH and another friend from Ocean City. It should be fun - and Uriah Faber will be there. A great fighter, but also very cute. Makes me feel like a dirty old woman!
War Cougars!
Friday, October 10, 2008
"You Picked the Wrong Daddy, Mommy!"
What Jacob now says when he gets in trouble with his dad...
Thursday, October 09, 2008
Tuesday, October 07, 2008
In a mood...
I am just pissy right now, so much so I can't think straight.
Friday, October 03, 2008
The Bailout
What a waste... If $700 billion went to researching autism, we would likely have a cause, a cure, and a ton of money left over fix other real problems, instead of lining the pockets of millionaires.
And Obama voted for this... Then again, McCain did too.
And Obama voted for this... Then again, McCain did too.
Thursday, October 02, 2008
Wednesday, October 01, 2008
Recovery?
This is the kind of crap you deal with when you are one of the others in the world of autism. We have made attempts at biomedical interventions with no results for Jimmy. I am not a believer in the vaccine theory - I have my own, but that's not one. But those are the camps... recovery, vaccine, then there is everyone else. I have tried to get into a DAN doctor, but can't afford to do it without insurance coverage. I have long been under the impression that the local support group is some hybrid of those two campus - I have never been because it is too painful. People telling me that Jimmy could recover if we have him drink rice milk and live wheat free. And when that doesn't work, we just weren't doing it right? Chelation? Hyperbaric chambers? Barbara isn't 100% right, but Jenny McCarthy isn't either. Jenny is fortunate - her son is better, she isn't having her husband suggesting that her son might need to be institutionalized at some point in the future, that he is too much to handle. There is so much support for those who believe in vaccines or recovery. What about those who are just muddling through? Are we bad parents? Are we not doing enough? Are we failing our kids?
Barbara Walters MD? Tells Jenny McCarthy Autism Not Reversible.
Ba-ba Wa-wa Don’t Know Nada.
So, there you have it, right there on The View: Barbara Walters says autism is not reversible and that Jenny McCarthy is giving false hope.
Meanwhile, Jenny McCarthy is sitting at the table, the mother of a recovered son. Off camera and back stage, Stan Kurtz is watching Barbara’s preposterous statement on an in-studio feed, mouth agape, himself the father of a recovered son.
And so it goes for thousands of parents around the country with recovered and recovering children.
Barbara, where exactly do you get your information to make such a sweeping statement? Is it OK to be 100% wrong about something and act like you are right?
If you’d like Barbara to hear your perspective, please write her and The View. From a TACA action alert:
WHAT DOYOU NEED TO DO? Your help needed is a quick email to Barbara Walters at the View. Jenny needs our help.
WHO SHOULD EMAIL?: Anyone who has a child affected by autism and has either:
a) benefited from biomedical treatment GREATLY (the definition of
greatly is up to you, the parent)
b) or HAS a recovered child
WHY?: The View folks think Jenny's message is an anomaly. Recovery is not
possible. Biomedical intervention does not work.
If you disagree with this opinion – we need your help. It is urgent.
The View main web site:
http://abc.go.com/daytime/theview/index
Ask the View:
http://abc.go.com/daytime/theview/ask
PLEASE address your message to BARBARA WALTERS
PLEASE DO NOT HOLD BACK YOUR EMOTION. PLEASE SPEAK FROM THE HEART. It is imperative that family's stories are heard from those affected.
It is time to share information about your child and tell your story.
Your help is needed today. Right now. Please take the time if you
qualify for the WHO SHOULD EMAIL.
Barbara Walters MD? Tells Jenny McCarthy Autism Not Reversible.
Ba-ba Wa-wa Don’t Know Nada.
So, there you have it, right there on The View: Barbara Walters says autism is not reversible and that Jenny McCarthy is giving false hope.
Meanwhile, Jenny McCarthy is sitting at the table, the mother of a recovered son. Off camera and back stage, Stan Kurtz is watching Barbara’s preposterous statement on an in-studio feed, mouth agape, himself the father of a recovered son.
And so it goes for thousands of parents around the country with recovered and recovering children.
Barbara, where exactly do you get your information to make such a sweeping statement? Is it OK to be 100% wrong about something and act like you are right?
If you’d like Barbara to hear your perspective, please write her and The View. From a TACA action alert:
WHAT DOYOU NEED TO DO? Your help needed is a quick email to Barbara Walters at the View. Jenny needs our help.
WHO SHOULD EMAIL?: Anyone who has a child affected by autism and has either:
a) benefited from biomedical treatment GREATLY (the definition of
greatly is up to you, the parent)
b) or HAS a recovered child
WHY?: The View folks think Jenny's message is an anomaly. Recovery is not
possible. Biomedical intervention does not work.
If you disagree with this opinion – we need your help. It is urgent.
The View main web site:
http://abc.go.com/daytime/theview/index
Ask the View:
http://abc.go.com/daytime/theview/ask
PLEASE address your message to BARBARA WALTERS
PLEASE DO NOT HOLD BACK YOUR EMOTION. PLEASE SPEAK FROM THE HEART. It is imperative that family's stories are heard from those affected.
It is time to share information about your child and tell your story.
Your help is needed today. Right now. Please take the time if you
qualify for the WHO SHOULD EMAIL.
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