realityblah

Where We Are Currently

2011-12-05T22:18:00.000-05:00

Back in pull ups. That's the long and short of it. We have tremendous regression in toileting and all sorts of behaviors. Every step forward feels like five steps back now. Still working hard in school, growing like a weed, but back sliding in stims or the bathroom or the OCD. It has been a frustrating couple of months.

Robert Wood, Jr Found Alive

2011-10-28T22:41:00.000-04:00

I have been walking around in a fog for most of the week, following the story of Robert Wood, Jr., the 8 year old boy with autism in Hanover, about 90 minutes south of where I live. As the days drug on the end of the week, my hope faded for his safe recovery. I had read that the search dogs kept losing the scent at the river's edge. If you follow news about children with autism who wander from home, you will notice a good number drown. Given everything that I heard, the ending that came today was more than an a miracle, if such a thing is possible. I can't wrap my brain around the fact that child is alive after six days.

I don't know his mother got through it. Jimmy has wandered about a half a dozen times now. Never directly from me. Last Thanksgiving, he was with my mother in Macy's and I was in another store with Jacob and he slipped out of the adaptive stroller and wandered away. We had no idea where he had gone. There were four exits out of Macy's. Three went out into the parking lot, one into the mall. The whole ordeal was a half an hour. Jacob had run off once at Fair Oaks and I was scared, but he knew his name and I knew he hadn't been taken - he had gotten cheesed off and sprinted. Someone grabbed him and brought him back to the information desk where he got screamed at. He stood a chance on his own, even at his young age.

Jimmy is a different kettle of fish. No sense of danger, no ability to communicate, and I don't have any real idea how he would react if a predatory person approached him. I tried to keep calm to deal with Macy's employees, 911, the police - if I lost it, I would have done Jimmy no good. But my body had such a physical reaction to the stress, it was insane. My pulse raced for a half an hour. I felt physically ill, shaky. (I honestly don't know how Robert Wood's mom kept it together for a week.) I had no idea how long it was beginning to end at the time, but every muscle in my body was tense. I kept my mind working, but I was absolutely sure that I would never see my son again. I could imagine that he could make his way safely back to me. The only time that he did anything close to wandering was a time he refused to go into Red Lobster, instead trying to sprint on to Sudley Road. I straddled him until two female employees of the fast food place next door came to help. Eventually my husband came as well. But if I had moved, my kid was intent on running into the street. I still have no idea why. When he ran at the mall, I was sure the same thing would happen again.

When the Macy's employee drug him back from the food court, I let out a sound that I still don't think was at all human. It's been a year and the anxiety of that day hasn't left me yet. He has bolted in our own neighborhood as well. You still have the same fear for his safety with cars, but a much better idea where he is going and a lot of people who know who he is and that he should never be anywhere alone.

After Thanksgiving, I faxed over an application to Project Lifesaver at the Sheriff's Office. In December, Jimmy took Officer Qusenberry on a foot chase, so he took a second one. I even checked to confirmed receipt. I was told that I was waitlisted. During this sheriff's race, I asked about the Project Lifesaver program of one of the candidates and got a whole debate started about it. Then I asked Sheriff Hill himself at a candidate forum the other night. I heard from someone that they lost my application and someone else that they never received, but the upshot is they just got some additional grants and that Jimmy is about to receive his unit. Next week! The peace of mind is huge. If he wanders away again, God forbid, it will reduce the search time. Timing is everything, I suppose.

I imagine Robert will be getting a Project Lifesaver GPS unit shortly as well. That child has angels with him. May they continue to keep him well and safe. I am astounded and grateful at the fact that this beautiful boy is still alive!!!

Article: Autistic children have distinct facial features, study suggests

2011-10-23T00:33:00.000-04:00

Now I am going to be studying his face again and again to see if I see it. I can understand what they are saying though. I met one of Jimmy's classmates recently and there was something in his face that echoed his. I couldn't articulate it then. It's not that they looked alike to the point they would be close relation. As a matter of fact, I think his parentage is more exotic than my uber-European lineage. But there was something about the eyes and the chins that I thought that this boy and Jimmy could pass for cousins. Of course, this study doesn't really explain why these possible similarities exist. But anything to get closer to a reason...

A thought

2011-10-11T21:15:00.000-04:00

Jumping Around at the Jubilee and Clifton Day...

2011-10-09T23:03:00.000-04:00

Part two of my fall photos...

Jacob flippingout...

I was very nervous when Jimmy insisted on doing the jump. Even though he was in harness, I still worried, like Houdini would unhook himself in mid air. He just jumped up and down and loved it.

Jacob again...

One the way to Clifton Day...

Climbing the monkey tree...

Fall Photos - Manassas Park Fire and Rescue Open House and one from the Fall Jubilee

2011-10-09T22:30:00.001-04:00

We love fall. October is one of those months when we have every weekend booked. Probably the most anticipated event is the Fire and Rescue Open House, followed by the Fall Jubilee. We truly have the most fantastic fire department here in Manassas Park.

What's up with us...

2011-10-08T21:36:00.002-04:00

Jimmy - 4th grade and doing fairly well. Except for the running and peeing everywhere but the toilet. He has no aim. Or he chooses not to use it. He is a little more verbal and a lot bigger - medication changes already and another to come.

Jacob - 2nd grade, looped in with the same teacher as last year. We love her, so it is a huge thrill. A third of his class is with him from last year, along with six former kindergarten classmates and one friend from Pre-K. It was very hard to keep the birthday party guest list sane this year.

Me - Sore from walking daily, really tired from the beginning of the year, knowing that it will be 2012 before I can catch up on my sleep. But work is good, the boys have transitioned back to the year well, and life is pretty good.

That's the update. I have some photos from the past several weeks. I just need to get them off the camera.

Nothing but good news these days...

2011-10-08T21:29:00.001-04:00

Whether you are on the bus...

Or in school...

The world sucks sometimes.

Miller Touts His 100% Small Business Voting Record on the Backs of Autistic Kids

2011-09-28T17:34:00.000-04:00

I always start anything about Jackson Miller by saying that even though I don't agree with him, he is one of the more personable and accessible people in the General Assembly. When kids in his district make Honor Roll, they get a letter from him. Jimmy did too. At one point, he supported mandated health insurance for autistic children. I assume it must have been party or donation or something, because he voted against the insurance mandate last year. He now touts his support of small business instead of families of autism, which is sad, because he knows several of us. Mercifully the bill passed... even though it didn't cover Jimmy, it is something for children of the ages between 2-6.

I am not in his district anymore, which is sort of mixed blessing. He is competent. He is direct for the most part. When he is being political, he will tell you why he is. That's a whole lot better than many politicians. But I wish Jackson's heart could be as good in Richmond as I know it is up here in Manassas. That's my biggest gripe about him. Maybe someday he will be part of expanding the coverage for children with autism. Maybe someday he will see Jimmy again and be moved to help him.

ADHD Symptoms Worsen Quality of Life for Those with Autism

2011-09-24T21:39:00.001-04:00

A new study...

Children with ASD have lower adaptive functioning – the ability to get along in daily situations – than typically developing children. Not only does the presence of ADHD symptoms compromise their adaptive abilities, quality of life is further reduced.

Read more: http://www.autismsupportnetwork.com/news/adhd-symptoms-worsen-quality-life-those-autism-93088394#ixzz1YvMKOWqQ

Welcome to puberty...

2011-09-19T15:32:00.000-04:00

Not that we are starting shaving or anything, but we just got back from UVA. All of Jimmy's dosages are being changed as they are ineffective at present because he is hitting a prepuberty growth spurt and hormone change. I have dreaded this day... autism isn't cute anymore as Jimmy grows into a young man, things get murkier as the waters change again, and you don't know what is going to happen next.

Enjoy the ride.

Autistic and Seeking a Place in an Adult World

2011-09-18T23:55:00.002-04:00

A great article. I long to know what Jimmy's future hold... that is, when I am not living in complete fear of it.

Cox Farms

2011-09-18T21:08:00.000-04:00

Our annual trip out... Jimmy went on the hayride without a fight and went on the biggest of the slides. A great trip...

DC's Shakes, Rattles, and Rolls

2011-08-23T21:38:00.000-04:00

Mother Nature and I are not on speaking terms.

I was born and for the most part raised in Southern California. With the exception of a brief sojourn for three years to northwest Indiana, I lived in suburban Los Angeles, the high desert, and San Diego prior to moving to the DC area twenty years ago. Throughout my youth, earthquakes were a part of life. Shortly after my first birthday, we experienced a 6.6 quake. The epicenter was the community where my mom's parents lived - their home and neighborhood sustained heavy damage. Olive View Medical Center, only open for a month, largely collapsed. My other grandmother worked there. The VA Hospital also sustained serious damaged and loss of life. Several freeway overpasses collapsed. My mother told me that she had a hard time staying on her feet getting to my crib as I napped as the world shook around me. I never woke, but I felt the effects for years.

I remember the smaller quakes, the way the earth shook. I remember the drop drills, they way we practice tornado or fire drills, we would practice dodging debris under our desks. Occasionally, the room would shake a little and you went under. Nothing serious in my childhood, but you were always prepared. You arranged your rooms so nothing could fall on you as you slept. Every time you went to Grandma Mayes house and you wanted a glass out of the cupboard, you had to undo a latch on the front of the cupboard and a hook on the inside of it. We laughed at her - it was a great deal of effort for a drink of water. She never wanted to sweep her entire kitchen out of her floor again. After losing so much and spending such time and care in rebuilding her home and belongs, she wanted to minimize any future damage.

I grew up afraid. Even the three years we lived in Indiana and experience tornadoes for the first time, I always appreciated the fact that at least you had a few minutes warning to scurry to the basement. Wildfires, as long as you aren't stubborn and you leave the first you are told, you might lose your property, but you won't lose your life. Same generally goes for hurricanes. But there is an unpredictability to earthquakes. The weatherman can't tell you when the fault lines that run under our planet will come alive and what the end result will be.

It is certainly more expected in California. It's part of the culture. The south looks to the north, north to south, each waiting for the other to have "The Big One." My sister Tracy lives in Washington State. From her backyard, you see Mt. Rainier, one of the most dangerous volcanoes in the world. You expect tremors like we had today... there. Out West. Not here. It's part of the reason I choose not to live there. I despise the uncertainty of it all. Some people who live in parts of the world where earthquakes are common find themselves able to coexist with them. I never was.

They scare the part of me that remembers hiding under desks, the part that was waiting for "The Big One." Remembers what the destruction of a 6.6 looks like and how long it takes to rebuild. I am really gratefully that the damage was so minimal for the area today. I hope whatever fault line woke up this afternoon to rumbles gently goes back to sleep for another thousand years. And I am thrilled that my own children are marvelling at today with more wonder and curiosity than fear.

As for my Grandma Mayes... 23 years later there was another quake. Northridge, a community I had called home for several years, was the epicenter for a strong 6.7. Northridge and Sylmar are only a couple of miles apart and Grandma Mayes suffered some damage again. Lost her dishes with nowhere near the mess. She put the trash can up to the cupboard and swept everything out. She was a clever lady.

Unlikely that Mother Nature. Nope, I am still mad at her.

Science Article: One Problem, Many Paths

2011-07-30T07:16:00.000-04:00

Must dust off psych books where they talked about neurons and dendrons and the like. Interesting ideas, like girls might be more resistant to the genetic causes of autism than boys, explaining the disparity in the numbers.

I've been bad...

2011-07-30T06:46:00.000-04:00

I have not kept up with this blog as intended. A few quick lines to bring my eight friends reading up to speed...

Summer's good.
Have done DC, a couple of museums, and one theme park with the boys with one more to come this week, with free tickets that Jacob won for a reading program.
Jimmy finally got into this therapeutic riding program. Very necessary structure for him. He has turned ten (seriously?!), but there is a serious uptick in both the running and his accidents, so the little structure he gets right now helps him focus a bit better as well as becoming more verbal. He loves the horses.
I really need to get a ton of pictures off the computer downstairs.

That is all for this early hour. More to follow. Really. I promise.

So... Natalie Munroe...

2011-07-29T22:49:00.001-04:00

I guess I was snoozing in February because I am only hearing now about the blogging teacher who makes fun of her kids online (on work time, no less.) Aside from questioning her choice of profession, I am most disgusted by her use of a cartoon - she took it down, but here is the gist of it, in a quote from a local Patch...

A piece of clip art that accompanied the post particularly enraged disability advocates and school board members. It depicted a special-needs school bus and read, “I don’t care if you lick windows, take the special bus, or occasionally pee on yourself, you hang in there sunshine, you’re friggin’ special.”

She attempted to defend herself on her own blog, though it is interesting to note that the relatives with disabilities that she trots out to highlight her "sensitivity" on the subject have physical disabilities. As the mother of one who more apt to pee, along with other behaviors that go along with developmental disabilities, I can tell you that people don't view these disabilities all in the same light. If she had any sensitivity, she wouldn't have used the cartoon and comment in the first place. Or she would have issued a true apology to those who would be offended. I am even more floored that an educated mother of young children (she is the mother of a toddler and newborn, apparently) would have such vileness in her heart. The health of your children isn't promised. Jimmy was a healthy, normal newborn - that gift ended before he was a year old. In an instant, someone like Natalie Munroe could find herself in these shoes through the hand of fate.

I doubt anyone like that thinks that deeply before speaking (or blogging) so harshly. She might want to do so in the future.

Edit: So I found a copy of the offending page with comic on a British news site. It's small. Yeah, it's offensive, at least to me. "If You Can't Say Anything Nice..." Indeed.

Okay, I need to catch up...

2011-07-01T22:08:00.000-04:00

It's been a busy couple of days... a few photos off my phone...

What is wrong with this world?

2011-07-01T22:04:00.000-04:00

From Daily Press comments' section on a special education article:

Americanborn at 7:47 AM July 1, 2011 Face it, go visit a school of your choice and realize that certain "so-called students" should not even be there in the first place! Many babies, if they were born in the animal world, would be eaten by their mothers or left to die a quick death. If doctors would do their job and focus on "QUALITY OF LIFE" society would not be faced with the is dilemna. It sickens me to see parents demanding that the world bows to the astronomical expense of HELPING THEM RAISE A CHILD that they can't take care of from the "get go". It sickens me to see parents struggling to make decisions regarding certain children as to who will take care of them when they are gone. Ask yourself one question before you judge my post....IF GIVEN A CHOICE...WOULD YOU LIKE TO LIVE A DAY LIKE THIS....A WEEK LIKE THIS????? Me, I wouldn't last an hour!

A Big Week

2011-06-26T10:43:00.000-04:00

Hopefully I will get around to get the pictures off my phone by the end of the week. We have a big one planned, so I want to share the photos. Okay, maybe the first three days aren't interesting, but on Thursday the boys and I are going to Kings Dominion with tickets from the Autism Society. On Friday, Jacob and I have a big trip to DC planned with a tour of the Capitol. The following week, we have White House tickets! I will try to get the zoo pictures up this week as well.

Backpack, Backpack

2011-06-19T08:20:00.000-04:00

Last day of school, I threw out Jimmy's backpack in the trashcan and got online to order him a new one (Pottery Barn Kids was having a sale.) I guess I should have waited for an appropriated transition. He went outside to get the backpack in "commando fashion." He never saw me throw it away, so I don't know how he knew. It's in the washer now. At least the cat came back. When the new one comes, I am driving the old one to the landfill.

When I got him back to his room I saw what was on his computer. Inspiration.

Summer Starts With a Bang...

2011-06-18T23:16:00.000-04:00

A week ago, I came home to Chief Evans, one of his officers, and both of my girls in the driveway. Jimmy had bolted from the yard on one of the ladies. She lost sight of him and called her bestie for help. They drove around the neighborhood and called me to report him missing. I called police, though I was fairly certain that he had gone down to the school. It wasn't much of a comfort to me, that instinct. Anything could happen. Apparently, a teacher caught him down at the school and was bringing him back up the street when the police got to our street and the girls got down it. It was all over but the crying (me.)

Elopement, running, is the most dangerous behavior that autistic kids have, in my opinion. They are dangerous to themselves and have absolutely no appreciation of the risk or any danger they might be in. Read missing boy story closely, especially ones found drown... often they are autistic. They had a fascination with the outdoors or water and let themselves out. It is why Jimmy is so exhausting and needs one on one care. He's a toddler in a nearly ten year old body who is every bit as smart in many respects. He just lacks the judgment. We are switching from a sliding glass to a french door, which has a better lock. We are on the waitlist for Project Lifesaver and we are finally considering an assistance or therapy dog. Anything that can help for those hours during the day when I have to shut my eyes. I fear the night.

2011-06-10T22:14:00.000-04:00

I loved this... I too often feel the disconnect. After posting this on Facebook, I realized I was not alone.

Why autism moms act the way they do

I ran into a friend at the dog park this morning and she asked me if I was "OK".
"When I saw you last week, you looked like you were on the verge of tears."
What was going on that day? Oh yeah...

In the spirit of Chantal Sicile-Kira's recent article Why do children and adults with autism act the way they do? in Psychology Today, I thought it might be helpful to to write an explanation of another mysterious cast of characters in the autism community: Autism mothers.

Why to we act the way we do?

Here are just some behaviors you may see in moms like me and what they could mean:
1) We cry spontaneously for what appear to be weird reasons. Our specialty is crying in public and at IEP meetings, and let me tell you, it is not pretty.
Cashier at 7/11: "May I help you?"
Autism Mom: sniff, sniff, sob..."I'm not sure.Thank you for asking. I'm just feeling emotional right now."
Why do we behave this way?
a)We aren't sleeping
b)Our already busy and emotionally intense days are punctuated with phone calls that catch us off guard and hurt our feelings.
c)Our child does something amazing or really funny, we tell a friend and it is clear they don't get why it's such a big deal. We hold it together until the nice cashier at 7/11 say's "May I help you?"

2) We join a book club. We think it's a good idea to do something intellectually and socially stimulating,and then we never show up.
Why?

a) Evenings are hard. Our kids need us. We are drained.
b) We did not read the book and worry that we'll say stupid things just to sound smart.
c) We are nervous about hosting book club at our house.

3) We are socially awkward. We didn't used to be, but now we blurt out bold statements like "Hysterectomy? I had mine vaginally. What about you?" (or worse "has your wife had one yet? ")
Why do we behave this way?

a) We are immersed in the world of quirky kids. We're out of practice.
b) We're tired
c) We feel so lucky to be invited places that we are manic.

The Electronic Leash... An Infringement or a Necessary Evil

2011-06-10T20:10:00.000-04:00

I heard about Alamo Drafthouse Cinema's PSA on texting and cellphone use during movies.

While this young lady's delightful attitude obviously helped her get shown the door (and the serving of alcohol at this theater and whichever doorstep she darkened next only served to enhance her mood), I think blanket zero tolerance policies are foolish and designed drive out certain kinds of clients, whether management fully grasps it or not.

Because of Jimmy's level of need, I always have my cell phone wherever I go. Even if he is in the care of an attendant, I am legally responsible for him. If he runs off, I have to be able to contacted immediately. If he has a seizure or climbs out a window, I have to know. Really any parent does. Does the Alamo not allow parents of special needs children to be in contact with their caregivers? Does Tim League not allow parent of typical kids to text sitters if they can't find the wipes? How draconian is management about this? I hear the suggestion that somehow parents should forgo outgoings until kids are older for these sorts of reasons. But what if you children, for all intends and purposes, aren't going to grow up and leave the nest. If they require a lifetime of care, does Tim League's policy preclude Austin and other Texas parents of special needs children the ability to see movies in his theaters? Is this policy, to some degree, discriminatory? I understand the need for reminders to be respectful of others, but to nanny people to the point that a certain group of people very possibly can't walk through your door seems a slippery slope.

I'm back...

2011-06-10T19:50:00.002-04:00

I will endeavor to be good over the summer...

Autism column costs local paper its credibility

2011-02-15T20:19:00.002-05:00

Last week, I canceled my subscription to the News and Messenger, the local Prince William County newspaper because of a column written by Michael Shannon, a part time columnist, on the pending insurance bill. I encourage every parent to read the pro-insurance industry, anti-autism mandate lines espoused by this writer. They are done so with some of the meanest spirit that I have seen in print.

"And all for only an additional premium of $59 per year! How’s that for a return on your investment? Plus, persuading the General Assembly to pass the hat for you avoids those awkward encounters in the break room when you ask coworkers to contribute to your family’s therapy fund. Instead the state is forcing everyone in the company to pay for autism coverage they may not want or need.

Socialized medicine — meet socialized compassion."

There is more, but you really have to read the article for full effect. I wrote him to let him know that I had made the personal decision to cancel my subscription based on his tone, a tone before in people who had accuse people with disabilities like my son's to be a drain on society and that this coverage would reduce cost across the board. His response:

"Ms. Kirkland,

I am completely unfamiliar with your son's problem. But based on your email
I can say you have a comprehension problem."

Stellar company notwithstanding, that is not where the N&M lost its credibility. No, it came in the comments sections. One of those "lobbyists" - really autism lobbyists are parents of children with autism - named Lee Talley posted the following comment.

"Mr. Shannon

Your attacks and the lies on the Autism Bill passed by both houses of the Virginia legislature show the weakness of your position and perhaps who is paying you. This bill has NOTHING to do with a federal mandate based upon the commerce clause but about the business practices of a regulated business in the state of Virginia. The insurance industry is not a free market industry. If you've had a loved one that needed reconstructive surgery from a mastectomy to having caught cancer in the early stages via a pap smear then you have BENEFITED from mandates.

I as a Republican applaud the courage of the House and Senate Republican leadership for tackling this issue head on! Being a Republican is about solutions, not just saying no all the time. Our leaders realize the true cost to the commonwealth that if 1 in 100 kids end up being wards of the state. That cost is approximately 3 million dollars a year. You think we have budget problems now just wait till these kids grow up, the Autism just doesn't go away.

Where do you even get off saying parents will get a windfall of free care up to $36,000! Last time I checked I pay $400 dollars a month in insurance premiums. FREE I don;t think so. These companies condemn our children to welfare and government hand outs by nothing more than a diagnosis. Speech, Occupational, and Physical therapy is no different for my child than it is for Congresswoman Giffords! My son has a brain injury too its call, AUTISM! When insurance companies start paying for treatments not based on diagnosis then we can reconvene this issue until the mean time if it takes a "mandate" to fix it then so be it.

Ironically you compare this mandate to Obamacare yet funny thing if you go download a copy of the healthcare bill, the word Autism is not to be found anywhere in the entire 1,100 page document. So again I applaud Republican leaders, like Speaker Howell, Del Hugo, Del Cox, and esp Delegate Tag Greason for bringing this bill to the legislator and I will applaud Governor McDonnell when he signs the bill into law.

Your article really needs a "paid for by" at the end of it because it reeks of someone who diluted their good sense and conscience with cold hard cash."

This thoughtful, albeit angry response, no worse than any of the other stuff that has gone on this week in light of the Manassas area tragedies on their comment boards (actually much better) and it was removed by their editor without public explanation. I'm sorry, I thought they were a legitimate news source. I guess I was wrong.

I would encourage parents of autistic children to call the editors of the News and Messenger to call the editors and demand that they do not engage in this sort of censorship in the future. Mr. Talley brought the other side to Shannon's piece in a tone no worse than his and immediately blocked it from view. What is their agenda?

If you are concerned, please call the editors now:

Executive Editor	Susan Svihlik	703-530-3920

Editorial Page Editor	Jonathan Hunley	703-369-5738

Justice Department warns Virginia of suit over failures

2011-02-14T14:38:00.000-05:00

From the Richmond Times Dispatch:

"Sent to Gov. Bob McDonnell late Thursday, the long-anticipated report gives the state 49 days to respond favorably to a litany of adverse findings affecting five state institutions housing 1,100 individuals; but it also draws attention to the condition of 8,600 other people in the community served by money from federal care waivers and to 6,400 others waiting for help, 3,000 of whom are regarded as critically in need."

Jimmy is on the IFDDS waitlist. After reading the report, I would rather die than have him at one of the training centers. He is no criminal. But the cannot cut current services to fund a few more waiver slots, as they have been discussing. I think DOJ will have a problem with that as well. All during budget season. Timing is everything.

If you want to get yourself angry, read the comments on the article. There are some really ugly people in the world. They like to hang out on the web.

Donations to people who voted against the autism bill...

2011-02-09T22:06:00.000-05:00

At least the big ones in the House of Delegates. Kind of interesting....

Here's a list of the "autism deniers," how long they have been in the House of Delegates, and their haul from the health care industry:
Rob Bell (R-Albemarle, 2002-2010): $55,820
Dickie Bell (R-Staunton, 2010): $10,747
Ben Cline (R-Rockbridge, 2002-2010): $$57,498
Johnny Joannou (D-Norfolk, 1998-2010): $14,200
Chris Jones (R-Suffolk, 1998-2010): $263,683
Steve Landes (R-Augusta, 1996-2010): $129,175
Dave Nutter (R-Montgomery County, 2002-2010): $119,182
Chris Peace (R-Hanover, 2006-2010): $82,384
Brenda Pogge (R-York, 2010): $$13,350
Lacey Putney (I-Bedford, "forever"): $101,522
Roxanne Robinson (R-Chesterfield, 2010): $27,865

That's not to say that the others haven't gotten lots of loot from health care, just that the industry didn't make it to the top of their contributor lists. For example, Greg Habeeb (R-Roanoke County, 2010) pulled in $21,266, while Lynwood Lewis (D-Accomack, 2004-2010) got $52,479.

My delegate, while he has several contributions from the healthcare industry this cycle (enough for anyone to be suspicious on his change of heart), is nowhere near the top of list. Corruption is a word I hear bandied about a lot - most when one side of the political spectrum doesn't like what someone on the other is doing. But I think that when you have this much money passing through the political process, it leads to a systemic corruption. And if you look at the affliations, it has infected Democrats, Republicans, and Independents. That needs to be changed - it is immoral and everything good government shouldn't be.

One more thing...

2011-02-08T20:22:00.002-05:00

One more thing for me to do, but this seems like fun. I am on the Patch's mom council for Manassas Park.

Teaching the Classics!!!

2011-02-06T15:36:00.000-05:00

Oh my gosh... too funny!

Something Jackson Miller Did Right in Richmond

2011-02-06T11:07:00.000-05:00

Because he in person is a nice guy, I wanted to find something positive to say, even though I am cheesed off about the autism thing. Thanks to a friend, I didn't have to search very hard.

HB 1476 Sexual abuse; limitations period.

SUMMARY AS INTRODUCED:

Torts; sexual abuse; limitations period. Extends the limitations period for actions for sexual abuse committed during the infancy or incapacity of the abused person from two years to 25 years from the time of the removal of the infancy or incapacity or from the time the cause of action otherwise accrues

A Virginia Autism Bill Update

2011-02-06T01:14:00.000-05:00

"Del. Jackson H. Miller (R-Manassas) said he opposed the bill because it only applies to some businesses, it would help a limited number of families and he doesn't believe federal law allows the state to cap annual costs at $35,000. He later asked Attorney General Ken Cuccinelli II (R) to determine whether federal law allows the General Assembly to cap costs at $35,000 a year. Cuccinelli has yet to issue an opinion.

And, considering Howell's power over bills and committee assignments, other members of the Republican-controlled House courted danger by trying to amend or kill the proposal, while the conservative group Americans for Prosperity targeted Howell (R-Stafford) in recorded phone calls statewide. The Virginia Tea Party also attacked the bill.

"This creates a slippery slope to a nanny-state type of government, eroding away the freedom of choice and autonomy that businesses and individuals enjoy today," said Mark Kevin Lloyd, chairman of the Virginia Tea Party Patriot Federation.

The Independent Insurance Agents of Virginia, Virginia State Chamber of Commerce, National Federation of Independent Business and the Virginia Association of Health Plans also remain opposed, citing the expense of another mandate."

Not shocked about the Tea Party, given a member told me that Jimmy was a drain on his tax dollars and should have been aborted after prenatal testing. Genius, that one... Not that autism can be detected and, hey, I thought the Republican Party was pro-life? Jackson Miller.... wasn't it three years ago that he co-sponsored autism legislation to cover children up to 18? Or was that two years? He knows the political reality - that what needs to get through isn't going to. Nothing is going to get through Richmond, that Richmond that puts business interests above the needs of children; paid, well funded lobbyist-donors above the needs of voters.

This bill won't help Jimmy. That has sucked a lot of my enthusiasm out for it and I am heartbroken for my son and the other kids this won't help. I admire those women who have put so much effort into, knowing their kids aren't going to be covered either - they are better people than I ever will be. Autism is a medical condition. ABA is a therapy that helps. This bill's passage still needs to happen to help families with young children who need to get intervention today. It will save expenses in lifetime care and education - not the lobbyists principal interests, but Virginia's tax dollars, which the people in Richmond are supposed to be stewards for. Show a little vision here.

Insurance companies won't do the right thing unless you force them to do so. That isn't a nanny state - if that dude from the Tea Party needs a Viagra prescription, his insurance covers it in Virginia. Why are impotent men more important than autistic kids?

Disappointing...

2011-01-31T20:57:00.000-05:00

That my delegate isn't supporting this autism insurance bill. Granted, I too don't think it goes far enough. It won't help my son. But Richmond has proved year after year that they won't think big on this. Helping some kids, little kids, is better than driving more parents into financial ruin as they quest to get the kids the help they need.

A person representing my community should put the health and well being of children first, regardless of party...

Just a reminder...

2011-01-31T20:50:00.002-05:00

The Companionship of Depression

2011-01-29T21:47:00.000-05:00

I don't know a parent of an autistic child who isn't afflicted with some measure of depression. It seems to be a natural companion on this road. No matter how good your humor is, there is always what the sadness of might have been or the paralyzing fear of what lies ahead. For the last few months, I have found it to be crippling. I am past mourning, but good Lord, I don't know where we are going or what Jimmy's future holds. I keep thinking about that there are people in the world who don't think should exist because he is a burden or that he shouldn't be educated... everything is negative. And it shouldn't be. Intellectually, I know that. Emotionally... I am just looking for the light again and it seems so far away.

My friend Michelle is an amazing mom!!!

2011-01-24T17:05:00.002-05:00

My best friend's sister was featured on this blog as an amazing Mom... and she is!

ADHD has joined Autism...

2011-01-22T21:18:00.000-05:00

At my house. Jacob was diagnosed a few days ago. I met with the school to see where we stood and while it impacts his behavior, it isn't negatively impacting his performance. He started first grade reading at a high first/low second grade level, according to their benchmarks. Now, it's fourth grade. Crazy! He is working on second grade math. So I truly have the opposite ends of the spectrum now. All over his IEP are the words, "This child needs to be challenged academically." Mercifully, they didn't add "Idle hands are the devil's workshop and if you leave this one alone, he will play with matches out of sheer boredom." The implication is there. If he gets bored, he will get in troubles.

Hands full. Officially.

Happy New Year

2011-01-02T00:11:00.000-05:00

Missouri has autism insurance coverage today. They also have fines for texting while driving. Come on Virginia, get with it...

I love Ozzy!

2010-12-12T18:03:00.000-05:00

And the TSA makes a 4 year old disabled child take off his leg braces to walk through the detector...

2010-11-28T22:27:00.000-05:00

The stupidity is mind numbing!

X-Ray Nation | TSA Glass Box Mother Over Stored Breast Milk

2010-11-27T14:25:00.000-05:00

X-Ray Nation | TSA Glass Box Mother Over Stored Breast Milk

A woman held up for over an hour, missing her flight, all over breast milk. You have to read this... narrative from the passenger directly.

I think all the stuff I have read about El Al's procedures has me supporting their approach. Certainly, we need to up the educational level of these TSA agents. Their inability to apply common sense is hurting the traveling public. Certainly the German fraus who had to check me in Munich and Frankfurt were infinitely more professional and educated than the security that we have over here. (Note to self, always wear a sports bra - no underwire!)

The Longest 15 Minutes of my Life

2010-11-27T09:02:00.001-05:00

So Jimmy had an adventure yesterday. We were at Manassas Mall with my mom yesterday. I had taken Jacob into the Toys R Us Express so he could spend a gift card from his birthday. My mom had taken Jimmy in the stroller to Macy's. Shortly after I walked in the store, I get a panicked phone call from my mom. Jimmy's out of the stroller and she thought she saw him headed for an exit. I run up to a cashier and ask her to call 911 and mall security, explaining the situation and his disability. I get a few customers to watch the parking lot exits until store security catches up to me. Then I get on the phone with 911.

First stroke of brilliant luck for me in that the 911 operator has an autistic older brother. She doesn't have to pepper me with too many questions about the disability and I don't have to waste time explaining, She gets it. The understands the seriousness of this and dispatches ten units with a K9. One finds me, the other finds my mom since we have fanned out (Jacob was being babysat at the cash wrap, on his best behavior since he was scared too.)

They are getting the information while everyone is searching, including the Macy's employees, who ran out of the store like it was on fire on Black Friday to look for my kid with the masses. Within three minute of the police arriving, it is a Macy's employee who brings him back to the store from the Food Court, where he had gone to play on the equipment. It's not a mall I go to regular, but he knows it well from going there with E all the time. He knew where he wanted to be, even if I didn't know where to find him.

Something in my head told me that it was unlikely he left the mall. And he won't go off with someone. But I was terrified he might go out those doors to the parking lot or the road. And that I wouldn't see him again, at least not alive. I cannot explain the emotional response. Nearly 24 hours later and I am not doing well, still shaking, still anxious, even though I got the best of endings. It's going to be a while before I am okay again.

We have a call into the Prince William County Sheriff's Office to get him a Lifesaver bracelet. Yes, I am lojacking my kid. Most jurisdictions see a 100% recovery rate with it. I hope to never need it again, but I want it there just in case after yesterday.

I don't have the words to express my gratitude to the Manassas Macy's, that 911 operator, and the responding officers. They brought my child back to me, a child who can't ask for help or even say he is lost or often his own name. No miracles for Christmas here, I think that card has been played.

Happy Thanksgiving

2010-11-25T19:15:00.000-05:00

Probably the best photo I have ever gotten of the two boys. Jimmy bolted off Santa's lap immediately afterwards.

TSA strip search of a child just got worse - he is autistic...

2010-11-25T19:03:00.001-05:00

Not that I like believing Glenn Beck on anything ever, but according to this the child never tripped the detector and was autistic:

"Glenn Beck had Luke Tait, the college student who took the infamous video of the TSA agent doing a pat down of the shirtless little boy, on his show this morning to discuss the incident at the airport. During the interview, Beck said that he learned from a ‘refounder’ (Congressional insider) that the little boy didn’t actually set off the metal detectors as the TSA reported, but rather the boy had on a baggy shirt that caught the attention of the TSA and thats why they wanted to do a pat down. Beck said he also learned a detail that hasn’t been reported yet, that the little boy has autism."

The video on the page goes into detail.

These people are awful... really.

Child strip searched by the TSA... this weekend!

2010-11-21T18:22:00.000-05:00

The boys will not fly until this nonsense is resolved. Can you imagine Jimmy having to submit to this? And he gets hand searched every flight because he can't walk through the medal detector by himself. Jacob would put up a lot of resistance if he was selected to. He wouldn't let a stranger, any stranger, run his hands all over him, even with me there.

I am far from a conservative or a libertarian, but honestly, we lost too much after 9/11. People don't need to be molested or stripped at airports. I know we need to keep our skies safe, but not from eight year olds.

Texas to drop out of Medicaid?

2010-11-06T16:13:00.000-04:00

A frightening post at Plinking Reality. Would Virginia do such a thing?

Miracle League Story on ABC

2010-10-26T21:17:00.002-04:00

Off the backs of the disabled...

2010-10-05T21:53:00.000-04:00

And surviving children of deceased parents, the Tea Party would make their cuts on the most vulnerable.

"Many conservatives and Tea Party candidates, including Michele Bachman and Joe Miller, are hoping to reform Social Security "entitlements," beginning with those recipients who are under the age of 55. This would effectively cut Social Security benefits for people who are either disabled or a survivor of deceased parents."

Can't mess with anyone above 55 without pissing off the AARP. But the disabled. Nobody sees them.

These people are Godless devils. Bring back the moderates.

Thinking of Sharron Angle, those who thing Autism isn't real, and people with disabilities shouldn't be brought into this world...

2010-09-29T18:32:00.000-04:00

About the eight minute mark, please...

Sharron Angle Redux: Autism Excuse Still Not Making Any Sense

2010-09-25T23:28:00.000-04:00

Okay, she tried to clarify:

"KRNV News 4 asked Sharron Angle's campaign for comment yesterday, and her spokesperson Jerry Stacy sent us the following in an email just before noon today:

"Sharron believes that anyone affected with autism deserves the best medical coverage and treatment, and she speaks out against these expensive government mandates which falsely label other symptoms as autism because it creates this huge cottage industry that drives up health insurance cost while diluting the needed coverage for those patients affected by autism...and nobody is buying Senator Reid's latest despicable attempt of trying to distract voters from his failed record."

Vice-Chair for the Commission on Autism in Nevada Ralph Toddre released this statement today:

"What Ms. Angle claims about AB 162 is false. The bill is very specific that the coverage is for autism spectrum disorders. It does not create a "cottage industry." It covers medically necessary treatment and evidence-based therapy, as well as the screening and diagnosis. It is autism specific. Legislators and advocates made sure of that. Read the bill! You don't condemn a bill that provides for medical coverage and treatment because you think it will become diluted! One in 110 children in this country is affected by autism. That is more than juvenile diabetes, HIV, and childhood cancers combined. All of those are covered by insurance. Why should autism be discriminated against by insurance companies?""

I guess the other symptom was what... pregnancy. Still doesn't make any sense. If this was coming from Reid, I would still be screaming. This is just insane.

Why indeed shouldn't autism be in line with diabetes, HIV, and cancers? Heck, Jimmy has seizures as a comorbidity now. Tell me this is not medical.

Not too long ago, I was out with the boys (it was over the summer, one of the rare occasions I ventured out both.) A man asked me what was "wrong" with Jimmy. I said he was autistic. He said that I was irresponsible, asking if I had prenatal testing, that I should have "taken care of it" before I created a burden for society. I was stunned, but didn't respond the way I would have liked because I didn't want Jacob to notice. I am still sick about. It isn't the first unkind thing I have ever said to me, but it was the worst by far. When I hear people like Sharron Angle, it is comments like that echo in like my mind. Heartless people that see my son as less than human, soulless insurance companies (who often buy people like Sharron Angle and, yes, even Senator Reid in Washington to spout crap like this for them - though Reid has a better record on autism than Angle at the moment) that see him not as worthy of care as someone who has been in an accident or had a stroke. Everyone deserve a life and my son deserves to have his medical needs met under my health policy.

My Aunt, Uncle, and Dadoo get phone calls tomorrow. If Dadoo's son is a registered voter, he gets one too.

Tea Party Member Sharron Angle Against Autism Insurance Coverage

2010-09-25T20:01:00.004-04:00

I was sort of shocked when I heard her comments. To say she comes of as ill informed is an understatement. Doesn't want to pay for babies? What's next, cancer? She doesn't understand how insurance works on a basic level. Moreover, she completely lacks compassion for autistic families in her comments. Her backpedalling makes her worse. I actually talked to someone from her campaign to see if they could clarify her comment or put them in a context where they would make some sense. While I found it completely kind of her campaign worker to take the time to call, the staffer could not articulate any sort of reason for those comments. He mentioned pregnancy and autism, which means he didn't have a grasp of what she said either. Click the link to watch the ABC news story.

In a perfect world, nobody would want their kids to be political pawns. But when the tea party holds autistic kids up and mandates are wrong, I will get involved. My aunt, uncle, and a man whom I have known for 30 years all live in the Las Vegas area and all are voters in that election. I will be making some phone calls. These are voters that don't have autistic kids of their own but who love Jimmy and I. I think my calls to them will make a difference in their votes on November 2. (After Richard Saslaw and Tim Kaine, I also hang up on Democratic fundraisers - I have no use for them either.)

Attention Jennifer Aniston

2010-08-19T20:04:00.000-04:00

... on behalf of my autistic son, whom the word has been directed at more than once by unkind soulless shells walking this Earth, I would like to invite you to remove the term "retard" from your vocabulary. Perhaps, as a suitable mea culpa, you could make donations to ARC, Autism Speaks, and other groups representing those with intellectual and developmental disabilities whom you offended with the use of that term. K thx.

Jimmy's photo collection

2010-08-05T16:39:00.000-04:00

The image labels were Baby, Cat, Dog Olive, Mom2, and Trick Daddy. He put them all in a folder. His perfect family?

Help!

2010-08-04T21:54:00.002-04:00

If someone can tell me how to fix yesterday's post, please do. Thanks!

Technical difficulties...

2010-08-04T08:08:00.002-04:00

Yes, I am working on it.

What I have been up to...

2010-08-03T23:15:00.016-04:00

I know it has been a long while since I have posted. Fatigue mostly. Mommy burn out. A summer school job. A trip courtesy of the in-laws (really, the nicest gift ever.)

I have been doing attendance at the high school while the boys are in summer school and camps. I should be cleaning the garage. Actually, most of the summer, it was really too hot for that, so what did it matter.

I have had four trips to UVA for Jimmy with one more left this summer. One was on the day of a horrible storm, when we arrived after a two drive just to have both appointments canceled. Everything sort of culminated today with a seizure diagnosis, which isn't unheard of - actually, the doctor said a 1/3 of autistics have seizures. And his are mild (staring spells.) But it is a medication change a month before school. Yay!

I need a summer break from my summer break. And I go back to regular work on the 16th.

But while Jacob was in Texas and Jimmy was with respite providers and relatives (that was a team effort, with E leading the charge and loads of support!), my in-laws gifted us with a trip for our tenth anniversary. With Jimmy's needs, my opportunities to travel will be few and far between - indeed, this is the first time I had ever left the continent, the first time I have left the country since the kids were born, and first time I needed to get a passport. It was amazing. We went to...

Florence

Crying babies, laughing Jimmy

2010-07-11T22:45:00.000-04:00

Jimmy's latest YouTube obsession is fairly disturbing. He laughs at crying babies on YouTube. First, I don't know why people put videos of their babies crying on YouTube - those aren't the moments I like to remember. Second, I can't fathom Jimmy's interest. This is the one I can find vaguely amusing...

Mother drowns child with autism: I love Scarlett, I hate autism

2010-06-19T21:05:00.000-04:00

This story kind of rattled me after my afternoon with Jimmy. I had to carry him out of Fair Oaks with E's help. His adaptive stroller is dead, so we tried an outing without it. Never again. It was so bad, security came around to see what was up. Horrifying. He's eight. What happens when he is eighteen?

We go on Friday to see about a new stroller. If we don't get one through insurance, I don't know if I can leave my house with him again.

She's back...

2010-06-19T14:55:00.000-04:00

It's been a long two months...

School's out for the boys and all but over for me. I think I have avoided this blog because I have just been overwhelmed emotionally. We got the gift of a week overseas (my first) for our tenth anniversary and all of the sudden, it was, get your passport, get your affairs, in order, you are getting on a plane that goes over the ocean. I panicked. I think the reality of 40 hit too. My mortality hit me like a brick and I was in a two month tailspin. Work and school board were only diversionary to the anxiety that has consumed me. Even though I have a little part time job doing some clerical stuff at the high school while Jimmy is in summer school and Jacob is in camp, I feel like the pressure is off. Time isn't moving so quickly. I can deal again. I am not as raw a nerve.

Katie, the middle of the niece's, is coming to help me this week - with the cat, she brings the estrogren level into balance in the house. It's nice. I pick her up in a couple of hours.

So with summer upon us, IEPs completed, Jimmy is now a third grade, Jacob is moving into the first, and my blog is back.

Autism Challenges American Science to Seek Cure

2010-04-18T08:36:00.000-04:00

Kind of broad, but does talk about a lot of the science of the brain and give the most recent stat and shows the progression in diagnosis in 20 years. Wowza... And McDonnell wants to make cuts now.

Autism is a brain disorder, typically diagnosed when a child is 2 or 3. Among Americans, it has skyrocketed 600 percent over the last two decades from 1 in 1,500 kids in the 1990's to 1 in 110 kids today and 1 in 70 boys.

I think Gov. McDonnell hates my son... he wants to take services again

2010-04-17T12:10:00.002-04:00

Think twice if you are planning on bringing a child into the world that will cost this state any money. That is the message that "pro-life" Bob McDonnell sends. Really, I thought the budget process was over. He really seems to hate these kids. (Before people make this partisan, Kaine showed them no love either, with what he threw as he rolled out the door.) He wants to amend the budget and undo everything the General Assembly did for Community Based Services. Take 250 IFDDS slots. Autism isn't real? Diagnosis hasn't gone up? What? I am so angry right now I can't even see straight. I need community based services for Jimmy. Virginia has no infrastructure to institutionlize him and that isn't what I want for him. I want him with me. Was he to be taken out and shot when he was diagnosed with autism? Managed care? Managed care was Kaiser... Kaiser said no OT, he had no skills to begin with, no PT for the same reason, speech for a half an hour a week when you get off the six month waiting list (for a child that couldn't speech), and no behavioral therapy because legally we don't have to. He wants to switch to managed care model at the behest of lobbyists because it is a for profit model that lines the pockets of insurance companies and other providers. It does nothing for people with disabilities. Call your delegates this weekend... you can find them through the ARC's website. Even if you aren't affected personally, make the time to make the call for Jimmy and the children and adults in Virginia who need these services as they are.

The General Assembly passed the 2010-2010 Budget on March 15, 2010. This week, Governor McDonnell proposed a number of amendments to the 2010-2012 Budget. The General Assembly will now meet for a reconvened "veto" session THIS WEDNESDAY, APRIL 21st at 12pm to vote on these amendments, finalizing the budget process.

There are two VERY serious concerns about Governor McDonnell's proposed amendments.
CONCERN #1: Amendments allow FMAP funds to be redirected
The Governor's proposed amendments give him the authority to use new federal Medicaid funding (FMAP) for items other than the restorations of community-based services that were included in the General Assembly budget. Since the language requiring use of FMAP funds for these restorations has been removed, this action essentially leaves many critical services for people with intellectual and developmental disabilities "up in the air".
What this means to YOU--
ALL of the restorations to community-based services are now in jeopardy, including:

250 new ID Waivers for individuals/families on the ID Waiver waiting list

Elimination of the proposed 2/3 cut to respite services

Elimination of the proposed 5% cut to HCBS Waiver provider reimbursement rates

Elimination of proposed freeze on HCBS Waiver enrollment

Monthly income for HCBS Waiver eligibility would not be reduced from 300% SSI to 250% SSI

Elimination of proposed cut to Assistive Technology and Environmental Modifications

CONCERN #2: Amendment mandates "managed care" for all HCBS Waivers
The Governor proposed an amendment mandating the "managed care" model for all home and community based waivers (i.e. using insurance companies to coordinate/authorize care). The managed care model is used to "reduce and control costs" of services.
What this means to YOU-- Based on what has been reported by advocates in other states, it is believed that moving to this model would have a detrimental impact on people with intellectual and developmental disabilities in the following ways:

There will be "caps" or limits on HCBS Services.

People with significant disabilities whose support needs exceed caps could be at increased risk of institutionalization.

Funding for services/supports could be redirected to administrative costs/profits for insurance companies.

Individuals/families could experience difficulty accessing/navigating supports and services.

More information about these proposed amendments can be accessed on Governor McDonnell's website.
The bottom line: In order to defeat proposed amendments that are harmful to people with intellectual and developmental disabilities - we need a simple majority in the House of Delegates OR Senate to vote NO to these amendments on Wednesday!

Please take the time to help those on community based waivers keep the services that they have the way they have them.

To tell you how things are going...

2010-04-06T16:21:00.000-04:00

Yes, I got busy again...

And I do have a lot to say about my trip to UVA. But it will have to wait.

That case of shingles that I had. The one that wasn't suppose to be communicable to my kids who had the chicken pox vaccine....

Jimmy was sent home with the chicken pox. Took him to the doctor. He didn't confirm. Said it wasn't. Yet. Said it might develop. Might now. We are starting antivirals now.

My poster Chuck is looking like one of the wisest men on the planet about now.

Jacob shows no signs, but my spouse has never had the disease nor the vaccine.

Why Sandra Bullock Might Consider Staying

2010-03-28T17:06:00.000-04:00

I loves me some Sandy Bullock. I always have. I don't run out to see every movie because, face it, some have been stinkers, but more often than not, they aren't. She is more of an everywoman than you get in Hollywood. I stayed up to see her win her Oscar - by God, that was a coronation, because she really had been building for it slowly since Crash. Then her personal life imploded by Tiger Wooding barely a week later - surreal.

I read this article today. I had to share it.

Because of his acts, she has to choose between her dignity and a five year old child she has come to love as her own. Ex-step-mothers have no legal rights. Sandra -- who dedicated her Academy Award to "the moms who take care of the babies and the children, wherever they come from" -- cannot leave him without leaving them. She cannot stay with them without staying with him. And what will America say, and what will happen to her career, if Miss Congeniality stays?

Stay or go, Sandy, I still love you. If you stay for your child, you have done so because you have done what biological parents find it hard to do - truly put her first. And maybe, just maybe, this is your chance, Sandra Bullock, to advocate for change where it might be needed in the law, to give yourself and other step-parents a voice.

Chicken Pox Redux - Another Way to Look at the Vaccine Debate

2010-03-28T11:39:00.000-04:00

Yes, I am off my blogging... largely because I have been sick for the past two weeks. Initially I thought it was the onset of my seasonal allergies, so I started to kick my medication into high gear. After a couple of days, my sore throat continued to get worse, so I went and got a strep test. It came back positive. That was a week ago. I took a nap and woke to notice a kind of abrasion just below where my bra strap would be on my side. I thought maybe I had some sort of reaction to the metal of the underwire, not anything that had happened before, but I could think of what else would have caused such a weird reaction. By the middle of the week, it had developed into a full blown rash and was blistering. I had no idea what was going on.

Wednesday night I woke to shooting pains through essentially the same location of the rash. I didn't sleep well at all for the rest of the night, really bad since some of the medication I take is suppose to help with that. Thursday morning, I googled shingles, saw the picture, ran to the school nurse in a panic. Once I was deemed non-contagious, I went through the rest of my day waiting for the 3pm doctor's appointment. I was educated on shingles (the stuff I hadn't read on the internet in the previous hours), loaded up with antivirals and Vicodan and sent on my way. Normally, when I am given pain pills like Vicodan or Percocet, even after the c-sections or the surgery in December, I take them a day or two and them I done. I am starting day four. I am conservative with taking them, but the fact that I take them during them day freaks me out. The pain from the nerve is unrelenting. The rash is healing, but I have been told that the pain can last for weeks or months.

When I was a kid, I had an epic case of chicken pox. When I was at the Kaiser hospital in California, they gathered the interns to display me when I came in to show them what a bad case looked like - at the time, I had them in places that they were unusual. Mercifully, I don't remember the details. From my understanding, shingles is being kinder to me (no face, no eyes), but it is relative. I am just relieved that my boys both were vaccinated against the chicken pox so they won't experience the joys of either. For all the debate over the vaccines and autism, right now, as I am suffering very painfully and I look at Jimmy and know, in my heart that for him, vaccines were not the genesis of his autism. I am glad I vaccinated both boys and the illness that I am suffering through now, even though it is mild in comparison to what it could be, is something that they will never know.

O Captain My Captain, Autism Is Calling

2010-03-27T11:45:00.000-04:00

I wondered if, in 20 years from now when we were both looking at leaving our children behind without us to care and advocate for them, we would be seeing a world where autism had finally been accepted and understood as the catastrophic epidemic that it is, and handled accordingly. Or, if our world would still be pretending autism is some weird, unusual disorder that the boy across the way has, and it doesn't affect us all.
Every single family will have someone in it with autism.
Are we willing to keep this denial up in the face of this awesome reality?
When do we act, if not now?

Have these researchers been to my house?

2010-03-13T00:11:00.001-05:00

"According to a new study, siblings of children suffering from autism may develop hyperactivity. It also revealed that mothers of autistic children are more prone to depression and stress in contrast to mothers of normal kids."

Tell me something I don't know... unfortunately these studies never seem to give you insight immediately on how to address the problem. But it does explain make you feel less crazy when you are looking at Jacob's behavior chart, knowing he won't focus in class, or when you are down.

Help a great idea!!!!

2010-03-08T17:47:00.000-05:00

As much as Jenny McCarthy makes me crazy...

2010-02-28T16:19:00.000-05:00

... this post in Basil and Spice gets enough wrong in her evaluation of the Time article that I wondered what she was reading. The author inferred the possibility of Landau-Kleffner, and even though she doesn't blame MMR specificially, she is still part of the green vaccine movement and still blames the vaccine load. Same difference to me. Lordy, way to be heavy handed on the other side.

"An article this week in Time Magazine inferred that her son, Evan, had a different neurologic disorder (Landau-Kleffner syndrome)—NOT AUTISM. Take a look here for a nice summary in Hollywood Life. According to their report, Ms McCarthy has reversed her position and now does not believe that the MMR vaccine was the cause of her child's developmental problems.

If this is true, her kid never had autism at all and she's suddenly changed her mind about vaccines. OK. The only problem is, there's a lot of blood on her hands. I'd like her give a public apology or have her volunteer for a public service campaign on vaccines with the CDC. It won't take back all the damage she has done, but it would at least it would show that she had some acknowledgment of personal responsibility. A small article in Hollywood Life is not enough, lady. But,what am I thinking? She's a celebrity. She has no personal responsibility."

Autism Articles... there are a few...

2010-02-27T20:36:00.000-05:00

Hollywood Takes on Autism from The Daily Beast - sort of the current face of autism in the media, from Dear John to Parenthood.
The Autism Vaccine Debate: Who's Afraid of Jenny McCarthy? from Time - I need to reread this article and digest this article before I write about it. When you have been given three copies of Mother Warrior, you start to feel that you are getting Jenny shoved down your throat. Add to it that she had success in an area where you have failed (biomedical interventions) and embraced the theory that you never really have (vaccines), you start to have very mixed emotions about the woman. On one level, I respect her greatly. On another, she makes me crazy. Anyway... more later. But read this...
Seeking Common Ground on the Vaccine-Autism Debate from the Boston Globe
The Bonding Hormone That Might Cure Autism from Newsweek on Oxytocin

Betrayed by Bob Marshall

2010-02-23T21:54:00.001-05:00

It shouldn't be a shock. He's a politician, right? And he honestly sees nothing wrong with what he has said: he was only referring to woman who have had abortions being more likely to have children with disabilities. From Insidenova.com:

“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically,” Marshall said at the news conference. “Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children."

When I called his office yesterday, their defense was that he didn't what was initially reported, that he had essentially said that increase in children with disabilities was God's punishment for abortion. So since he didn't say that, that makes this all okay, seemingly to what he is putting out to the media.

None of this okay.

I will explain why. When you have a child with a disability, everyone asks the same questions of the mother, whether they are a complete stranger or a close relative. What did you do? Did you remember to take your prenatal vitamins? Did you have too many sonograms? Did you take medication you shouldn't have? Is it in your family? (And they never ask if it in his...) Did you drink? Did you smoke? Did you take drugs? Even within my own disability community, there is the blame game - did you give him vaccines? That theory was out there when Jimmy was a baby and I chose to do it anyway. I have never thought that it caused his autism, but the looks that you get sometimes... from people in your own community, other parents who's kids have autism, like we had more information and we did this to our kids anyway. It is so upsetting.... I digress.

Ultimately, it all goes to the same thing. What did you do to make your baby this way? These these things can't just happen. They don't just happen. If they just happened, you would have to acknowledge on some level it could happen to you. If you are blessed enough to have happy, healthy children, often that is the last thing you want to have to accept. It is easier to blame us.

Bob Marshall has now added one more thing to the list. Congrats moms of disabled kids everywhere, we get to be asked if we have had abortions in the past. Trust me, it will happen. And if we aren't asked often, only slightly more often will people think it. You think I am kidding. I have been asked every question under the sun. Asked if I took my vitamins. Asked if I drank too much diet soda. Asked if I drank too much regular soda. Coffee. Alcohol. Drugs. Ate feta, sushi, salmon or anything else on the don't list for pregnant women. I have been asked about my gynecological health by a pregnant mom who saw me with Jimmy and was worried about autism. She tried to get personal before I shot her down for being rude. I am all for educating, but it was ridiculous. Someone will ask me, thanks to Bob Marshall, if I had an abortion. And more will think it... just as often think about "What's wrong with that kid? How'd that happen?" when Jimmy lays down in the middle of Target kicking and screaming, staring at him like he is a freak show, as if he isn't a person.

Because of what Bob Marshall said, the way he said it - that may not have been his intent to throw every last woman who has given birth to a child with a disability under the bus of abortion, that was the net effect. This world that we live in is about people staring and pointing at us and our children. There but for the grace of God... Whether it is to assure themselves (falsely) that it could never happen to them or to make them feel superior, life is the point and stare. And Bob Marshall has slapped a scarlet A on us and, with the gracious help of the media, shined a spotlight on us and our children and told them where to point. You can't get much more cruel than that, intentional or not. His apology to date doesn't cut it. Not by a long shot.

....One more thing...

Gov. McDonnell, before saying this:

“They were wrong and offensive comments and we should do everything we can for young children who are disabled and provide the best safety net we can,“ said McDonnell, a former delegate from Virginia Beach who has known Marshall for many years.

You might want to remember that you just said in your budget proposals that you want purge the EDCD waivers by 50%, which is serving many of those children that you are referring to in your quote. Including mine. Get rid of consumer directed hiring of attendants and respite providers, used mostly with children and go back to agencies, which mostly serve seniors. What safety net? I don't think there is any safety net or intention of serving our kids in your budget proposal. Which side of 50% is Jimmy sitting on? I would like to know, because you and the General Assembly are putting families with special needs through absolute Hell right now. Mine included. Delegate Marshall has only added to our pain.

Governor McDonnell Attempts to Ruin the Lives of Families Suffering Through Autism

2010-02-18T22:20:00.002-05:00

The governor’s proposal to cut $63 million from in-home services for people on Medicaid waivers assumes that half of them won’t get any services at all. “The need is not going to be met,“ said Heidi Faustini at The ARC of Virginia.

So the after hating on Kaine for proposing respite cuts, the other shoe has dropped and come to find out that instead of finding other ways to cut the budget, Governor McDonnell is going to do it by cutting education and services to the disabled. After finally getting services in place for Jimmy, the new governor, the pro-family, pro-life governor wants to purge 50% of those getting the EDCD waiver off the roles. He also wants to get rid of the consumer directed hire and force everyone to go through agency hiring. Which side of the cut Jimmy would be on of that dreaded 50%, I don't know, but I don't want to wait a year to find out.

It's crushing because Jimmy's life has improved with the help. My husband and I have both been able to get surgeries that we needed because of the help in the home. Jacob, who was crumbling without attentive parenting, has thrived these past few months and reclaimed something of a normal childhood of sports, school, and friends without Jimmy being the sole focus. Our lives and our family had improved with the help. The stat I like to remind people of is the divorce of 85% among families with autism. These services preserve families and stability. Again, that stability will serve to keep Jimmy in our community and our home much longer than if I was a single parent going this alone. Now we don't know what the future holds. We just know that the governor doesn't care about the needs of children of autism, the needs of families like ours, or the elderly or the disabled in general.

So now I live in a state that does not require health insurance to cover therapeutic interventions for my child, does not provide adequate funding to local school districts to provide a free and appropriate education for him, and now will not provide the community based attendant and respite assistance that, over the long term, will allow him to continue to live in our home and larger community. (Trust me, handing a child with behaviors at 8 is very different than when he is 18.) Pass the buck much, Virginia. I pay health insurance, I pay taxes and today I feel like I am getting the finger from everyone.

I am fighting so Jimmy can have the best future possible and he can continue to live with me as long as I can physically do it. Then maybe his brother will be in a position to take over. It's better and cheaper than institutionalizing him. Seems that the governor can't see the forest for the trees, because that is exactly the path he is setting kids like Jimmy on with this budget. What he is proposing isn't just ill advised, it is monstrous.

I hope to God that the General Assembly does better by us in their proposals and that their ideas are better than McDonnell's and can go forward. They can't really be any worse at this point.

Is it spring yet?

2010-02-17T20:38:00.000-05:00

The snow is destroying my mood. It is destroying my house. I am finally back to work and the boys are back to school. I am amazed my sofa survived the blizzards, because Jimmy just climbed all over the furniture. We did lose two Ikea chairs - they went out with the trash today as they were beyond repair. We still have two feet of snow in the backyard with no access to the swingset. We need some melt badly. When I was home, Jimmy was on the computer, Jacob was on the Wii, and since Jacob flips when I leave the same floor he is on and you can't leave Jimmy unattended, I spent a lot of time with the laptop on the internet, specifically Facebook... playing Farmville and Uno and seeing how many people I really want to friend in the world. I have finally burned out on Farmville - I just harvested my last crop and left my fields fallow tonight until I actually want to play again.

In the world of autism... still waiting for Kruge/UVA Charlottesville at the end of March. Heck, I am still waiting for March. March. I want March.

Washington Post: Sarah Palin should beware of exploiting her youngest child

2010-02-13T22:45:00.000-05:00

A great commentary on the whole Sarah Palin situation, sharing my favorite segment:

Palin wasn't wrong about the inappropriateness of the remark, for which the president apologized to the Special Olympics before the segment aired. But were her objections primarily those of a wounded mother -- or those of a heat-seeking politician? Will we be hearing from Palin every time someone uses the R-word or makes a lame joke?

Well, no, not every time. When Rush Limbaugh used "retard," suggesting a "retard summit" at the White House, it was "satirical," Palin recently explained to her Fox News colleague, Chris Wallace. When Emanuel used it, it was name-calling. It isn't clear whether Palin considered Rush's memorable mimicry of Michael J. Fox's "fake" Parkinson's disease symptoms another demonstration of satire or mere hideous cruelty.

Given that Palin obviously made an excuse for Limbaugh, whose stab at humor was nothing resembling satire, means that her "teachable moment" via Emanuel was really using her child as a political tool.

Thank you Kathleen Parker!!!! And I didn't know that Limbaugh said that about Michael J. Fox... how outrageously cruel a human being is he. What sort of person is Sarah Palin (or anyone else for that matter) for defending someone who says stuff like that? There are all sorts of great Republican women who are ready, willing, and able to be president. Sarah Palin shouldn't be on that list right now if this is the type of person she supports.

I am in the mood for shoes...

2010-02-13T19:28:00.000-05:00

I spent entirely too much time browsing Piperlime tonight. The Keen maryjanes are probably what I would get and wear the heck out of, because they are totally Mom shoes. But I am trying to find my girlie girl again. I love the Betsey Johnson's in the middle, but I honestly think I have forgotten how to walk in anything like that. Having said that, I am a woman and I should totally relearn. The Nine West pumps are cute, I love the pumps, and they would be more easily walked in. The cowboy boots... cute as hell. I want them. I don't need them. I need heels more, but I love them. The last shoes... I see these everywhere. I can't decide if I like them or not. The heels are always incredible way high if they aren't a wedge - I have never been able to walk in a wedge without rolling my ankle - but I can't decide how I feel about the look.

I really should buy a pair of heels and clean house in them until I have mastered them enough to go out in public. I am sure I am making more out of this than it is, that it is like riding a bike, blah, blah, blah, but I really stopped wearing them when I got pregnant. With small kids, definitely not practical. With Jimmy the runner - I don't even wear flip flops with him now. Only foot wear that withstand pursuit. But there are something that I just want to start taking back in my life. Some are big, some are small. I am not sure which column I would put heels in right now, but I am taking them back.

So let's start it up... Rush Limbaugh Sponsors...

2010-02-12T12:19:00.003-05:00

Since it has come to my attention that Rush Limbaugh likes to use the word retard to describe pretty much anyone he doesn't agree with and Sarah Palin (even though her own child has a developmental disability) defends his use of it as satire, I thought it was time to trot out a list of his sponsors on my blog to along with that of Michael Savage. Since my own son had that slur thrown at him as recently as trip to the Marriott at Sea World (there's a long story), I have a special disdain for that word. This initial list included Scotttrade, where we have an account. I removed it myself after a phone call to our local office and their follow up, which found that they quit advertising on Rush over six years ago. Sadly, these things have a habit of perpetuating themselves. Good thing I checked - I was ready to close the Scottrade account. And Red Lobster hasn't advertised in over five years... so they are gone off the initial list to. But if anyone has anything to add or delete, feel free to leave it in the comments section.

Or you can always check his website.... if I get flowers from Proflowers for Valentine's Day, I won't be happy!!!

ProFlowers
wecare@customercare.Proflowers.com
1-800-580-2913

Overstock.com
1-800-989-0135
(customer comments and service email)
otherinfo@overstock.com

eharmony
300 N. Lake Ave., Suite 1111
Pasadena, CA 91101
media@eharmony.com
Web contact form
626.795.4814
FAX 626.585.4040

Inverness Medical (maker of stresstabs)
51 Sawyer Road
Waltham, MA 02021
1-800-899-7353 weekdays, 8 am. - 6 p.m. (Eastern Time.)

Onstar
Online comment form

Hotwire Corporate Headquarters
333 Market Street, Suite 100
San Francisco, CA 94105
advertising@hotwire.com
1-877-HOTWIRE (468-9473)
415-343-8400

Sleep Number Bed
1-800-438-2233

The Neptune Society of Northern California
Stewart Enterprises
12070 Telegraph Road #107
Santa Fe Springs, CA 90670

Oreck Upright Vacuum Cleaners
Oreck Corporation
100 Plantation Road
New Orleans, Louisiana 70123
Online contact form
1-800-289-5888

Smart & Final
Customer Relations
PO Box 512377
Los Angeles, CA 91001-0377
(Heard on KFI 640 in Los Angeles)

Mid-West Life Insurance Company of Tennessee
9151 Grapevine Hwy.
North Richland Hills, TX 76180
Phone (800) 733-1110
(web banner ads on rushlimbaugh.com)

AutoZone Inc.
P.O. Box 2198
Memphis, TN 38101
Phone (901) 495-7185
Fax (901) 495-8374
investor.relations@autozone.com

UPDATED - Citracal - Mission Pharmacal
Bennett Kennedy - Citracal Product Manager
Mission Pharmacal
P.O. Box 786099
San Antonio, TX 78278-6099
Phone:(800) 531-3333

Blue-Emu
Blue Emu refuses to give a contact other than their generic "info" box: <info@nfidiet.com>
1-800-432-9334
http://www.blue-emu.com/

Lumber Liquidators
Toll Free: 877-645-5347
Contact list: http://www.lumberliquidators.com/contact_us.html
Avacor (hair loss treatment)
(customer comments email)
comments@avacorusa.com

Lazerguide® (golf instruction tool)
PO Box 807
New Hudson Michigan 48165
1-877-266-6430 (toll free)

Mission Pharmacal Company
10999 IH-10 West Suite 1000
San Antonio, TX 78230
Telephone: (800) 531-3333

General Steel Metal Buildings
1075 South Yukon, Ste. 250
Lakewood, Colorado 80226
Toll Free: 1-888-98-STEEL
Phone: 303-904-4837
Fax: 303-979-0084

Life Quotes, Inc.
32045 Castle Court
Evergreen, CO 80439
1-800-670-5433
info@lifequotes.com.au

Select Comfort Corporation
6105 Trenton Lane N
Minneapolis, MN 55442
Phone: 763-551-7000
Fax: 763-551-7826
investorrelations@selectcomfort.com

RegionalHelpWanted.com, Inc.
1 Civic Center Plaza, Suite 506
Poughkeepsie, NY 12601
800-365-8630
845-471-5200
Feedback@RegionalHelpWanted.com

The Swap Shop CLICK HERE
3291 East Sunrise
Ft. Lauderdale, FL
swpshop@aol.com
Phone - 954.791.$WAP

Pfizer Inc
235 East 42nd Street
New York, NY 10017
212-733-2323

What I Just Posted on Facebook...

2010-02-12T09:33:00.000-05:00

(And really, if you know my name, you should friend me there too...)

Going to leave the house with both of my kids, without the aid or assistance of anyone else. Wish me luck. This usually ends badly.

Snowoverload

2010-02-12T07:45:00.000-05:00

Never have I been so busy doing so little. My days have been one endless blur of keeping Jimmy's clothes on, his body off the furniture, and him out of the pantry and away from the fruit snacks. This week has been the object lesson of why this child needs the structure of year round instruction. I pity, absolutely pity what Ms. K is going to get back next week. Jimmy cries for home when I drop him off at school, but he cries for school when he is at home, which means transitions are going to suck next week and Mr. M is going to likely going to take another nut shot (happened a few weeks ago.) His attendants, especially E, have done their very best to keep coming regardless of the weather to help maintain structure for him, which maintains structure for Jacob by extension, but it has been a struggle.

I am honestly considering venturing out with both of them this morning by myself, which is something I never do. I need to get a gift, but I just need to get out and so do these kids, no matter how daunting a task it is for me. A trip to Fair Oaks may be in order.

How has your week been?

2010-02-10T18:57:00.002-05:00

A Response to a Friend's Facebook Post...

2010-02-09T20:46:00.001-05:00

It sort of nicely sums up how I feel about the whole Rahm Emanuel flap...

"And I would like to say Sarah Palin is a complete hypocrite for saying that it is okay for Rush Limbaugh to use the word, categorizing his use as satire. Who cares? My son is autistic and he is eight - yes, I have heard the word applied to him and it crushes you. For about thirty seconds, then you attack. I have never taken it lying down. Sarah Palin owes my son an apology, as does Rahm Emanuel and Rush Limbaugh."

I don't think I will ever get it from any of the three of them as they are all too arrogant for their own good. No one can justify using that slur, whether it be personally or defend someone of a similar political affiliation of doing so.

More tomorrow. I just realized again I haven't posted in a week. Never have I been so busy doing so little.

A local argument that bears repeating...

2010-02-03T12:58:00.000-05:00

Because it affects special education, regular education, my kids, my neighbors... I can't believe not one, but two governors proposed slighting our region like this.

Reprinted from the Washington Post:

Insult from Richmond
By Sharon Bulova, Corey A. Stewart and Scott K. York
Education is the silver bullet. Our children are our future. These are things we know intuitively, and in these uncertain economic times, we must continue to strengthen this foundation to ensure our economic recovery and success in a global marketplace.
As governments at every level face significant budget shortfalls, elected officials are wrestling with difficult decisions and painful cuts. In Northern Virginia, unfortunately, our challenge is exacerbated by a recent state budget proposal to freeze the local composite index (LCI) for K-12 education.
The LCI is the measure used to determine state and local shares of K-12 funding in Virginia. The formula uses data (growth in student population, local income, retail sales and property values) to determine a locality’s ability to pay for its schools. It is part of the routine distribution for education funding that occurs every two years. It has been in place for four decades.
Traditionally, the funding formulas disadvantage Northern Virginia, as revenue is redistributed to areas with fewer resources. This year, however, with property values plummeting and school enrollment growing, the formula would actually trigger an improved share of funding for Northern Virginia jurisdictions.
But in his final budget presentation in December, former governor Tim Kaine proposed freezing all Virginia localities at the previous LCI for one year. This move would cost Fairfax, Prince William and Loudoun counties $118 million. Ironically, localities outside of Northern Virginia, whose comparative wealth increased, would get additional assistance.
Northern Virginia is proud to be the economic engine of the state. We put significant local dollars into K-12 because we know that our first-rate educational system is a key to our quality of life, bringing major Fortune 500 companies to our area, benefiting all. Our residents and businesses understand that maintaining excellence in our schools is a critical component needed to lead us out of this national recession.
A freeze in the LCI is patently arbitrary and an insult to our jurisdictions. We have played by the rules, and this unfair change would pull the rug out from under us at a time when we can afford it least. Gov. Robert F. McDonnell and the General Assembly must not allow this proposal to stand.
Sharon Bulova (D), Corey A. Stewart (R) and Scott K. York (I) are chairmen, respectively, of the boards of supervisors in Fairfax, Prince William and Loudoun counties.

Journal Retracts 1998 Paper Linking Autism to Vaccines

2010-02-03T09:34:00.000-05:00

Lancet finally did it... and not a moment too soon. I have never been a big believer in the vaccine theory, which is a lonely view to hold in the world of autism. When things started to change for Jimmy was when we hit the world of ear infections and antibiotics at the age of nine months. But I can't say for certain if they are related. But with all the screaming about MMR means all the theories that I have heard that hold water with my experience - autism as an autoimmune disorder (my family carries a genetic marker for a certain one), any link to antibiotics, and really any other theory as to why kids like Jimmy are the way they are doesn't get explored they way it could or should. And every night I go to bed, I wonder if I will live long enough to see him get any better or if I will die leaving Jacob an impossible burden. It's hard to have hope when you live in state where year after year your General Assembly denies even the most modest initiatives towards therapeutic care. When parents can't even embrace other parents who have different ideas about how you have arrived at autism's door. It took me five years to become completely depressed and cynical. I am hoping to find my way out. Maybe the actions of the Lancet will be some momentum to start. MMR as the cause of autism does not equal gospel.

Next, if we can convince people that Hugh Hefner did not Jenny McCarthy a medical degree, we'd be getting somewhere (GFCF works for some kids, but it didn't work on mine, yet everyone feels the need to give me the books...)

Stealing from Facebook again...

2010-01-31T17:28:00.000-05:00

From the Virginia Autism Project:

"What the lobbyists will not tell you: According to the Kaiser Family Foundation, Va Insurance Premiums are below the national average despite having a higher number of mandates. In other words, mandates do not directly corellate to high insurance premiums. HB 303 will actually save Virginia money, if passed, due to ...savings expected in Special Education.

Autism is a neurobiological disorder impacting 1 in 110 individuals and requiring medical insurance coverage. Medical research has proven that early intervention will will yield favorable results and reduce the cost of special education by $147k per student in almost half the cases according to Virginia's audit agency (JLARC). Lets be smart about autism ... mandate early intervention and pass HB303. Please tell your Delegates and Senators before Tuesday's hearing."

From Dlisted...

2010-01-24T01:05:00.000-05:00

Okay, don't let the title fool you... it is really a great, albeit sassy article about revenge from the woman who was the possibly unknowing mistress of the president of Oracle. It is really funny, thus shared. Because since I can't sleep tonight, I need a good laugh.

Hot Slut Of The Day!

Posted using ShareThis

Good news from Facebook!!!

2010-01-23T11:06:00.000-05:00

From the Virginia Autism Project - there are 10 autism bills this year, including another one from Delegate/Rock Star Bob Marshall:

"House Bill 34 (HB34) provides the most comprehensive services by mandating health insurance coverage for autism spectrum disorders in individuals under the age of 21. Thank you Delegate Marshall for your support!"

Intellectually, I know the other one stands a better shot, but emotionally I can have a little hope that maybe, just maybe...

Word to Live By

2010-01-23T10:20:00.000-05:00

"All I ask of you is one thing: please don't be cynical. I hate cynicism -- it's my least favorite quality and it doesn't lead anywhere. Nobody in life gets exactly what they thought they were going to get. But if you work really hard and you're kind, amazing things will happen."

Conan O'Brien

A Great Article: Patient Money: A Road Map to Help Parents Deal with the Financial Burden of Autism

2010-01-22T21:29:00.000-05:00

PATIENT MONEY

Dealing With the Financial Burden of Autism

By WALECIA KONRAD

WHEN Jeff Sell’s twin sons were found to have autism 13 years ago, he, like so many other parents in the same situation, found himself with a million questions: Will my children be able to function? What are the best treatments and where do I find them? How will this affect the rest of my family?

And besides those monumental worries, Mr. Sell kept asking himself another fundamental question as he began the long string of doctor and therapist visits with his sons: “How in the world am I going to pay for all this?”

Autism trends, treatments and therapies routinely make headlines. Often overlooked, though, is the financial burden for many families with autistic children.

Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.

That figure includes medical costs like doctor visits, prescriptions and occupational and speech therapy, as well as expenses for things like special education, camps and child care, said Michael Ganz, the author of the study, who is now a health care consultant.

“It can cost $3.2 million to take care of an autistic person over the course of his or her lifetime,” the study said.

More families are grappling with the disorder than ever before. One of every 110 8-year-old children in the United States has been diagnosed with autism — and one of every 70 boys, according to the latest survey from the Centers for Disease Control and Prevention, released last fall. That is up from one in 150 children in a comparable report released in 2007.

“The numbers are just amazing,” said Pat Kemp, executive vice president of the advocacy group Autism Speaks, “Unless we attack this like a national health crisis, we’re going to have a huge economic crisis on our hands.”

Certainly families feel the financial strain. Many health insurance policies do not cover autism treatments, while those that do often have severe limits. And there is very little government or private financial assistance available.

In many cases these children will need assistance all their lives, Mr. Ganz points out. Making sure there is money for the future is something else parents worry about.

When his sons received their diagnosis, Mr. Sell was practicing personal-injury law in Texas, and he began paying for many of their treatments from his own income and savings. In 2005, as he became more involved in autism issues, he joined the staff of the Autism Society of America in Bethesda, Md., where he is now a vice president.

His sons are now 15. One, Joe, is talkative and considered “high functioning.” The other, Ben, is nonverbal with profound autism.

“What works for one child doesn’t necessarily work for the other,” Mr. Sell said. “So we’re talking about finding and paying for twice as many treatments.”

In the early years, the Sell family had some autism coverage under Mr. Sell’s health insurance. But claims for certain therapies, tests and treatments were often denied. “I was very aggressive about appealing those denials, and I often won,” Mr. Sell said.

But even with coverage, Mr. Sell found he needed to pay enormous amounts out of pocket to come close to giving his sons the 20 to 40 hours of behavioral therapies each week that were often recommended. (Eventually, as discussed below, Mr. Sell was also able to obtain financial assistance through a special part of the Medicaid program.)

Although direct financial support may be scarce and hard to obtain, there are several autism information and advocacy groups that routinely help parents navigate financial hurdles. Here is a road map parents can use to get started.

CHECK YOUR INSURANCE Coverage for autism treatments is still far from common, but it is improving. Some large employers offer policies that cover treatment, and 15 states have passed laws mandating at least some autism-related coverage. The Autism Society’s Web site lists the relevant states. (That section of the site is still under construction, but you can scroll down to see the states.)

In addition, Maine and New Hampshire both have legislation pending that could pass soon, Mr. Kemp said.

If you do have coverage, watch for limitations. Because treatment for autism is so individualized, there are few uniform standards or protocols for insurance companies to follow. That means parents often have to argue that a certain therapy or treatment is necessary. Also, be sure to check any caps on treatment, Mr. Sell warns. What may look generous — say $36,000 a year — can be spent quickly. Or there may be limits on how many sessions of a particular type of therapy will be paid for each year.

And you will want to coordinate your insurance coverage with the services you may be receiving from your child’s school. If an occupational therapist sees your child regularly in school, for example, you may want to save your insurance dollars for social interaction therapies.

In addition, you may need to be especially aggressive about coverage for some medical conditions. Gastrointestinal problems, for instance, are extremely common in autistic children.

Mr. Sell found himself fighting for such coverage for Ben, his nonverbal son. The insurance company had denied the claim for gastrointestinal testing, saying that because Ben’s behavior problems were related to autism, the testing was not covered.

Mr. Sell, convinced Ben was in pain and could not tell anyone what was wrong, appealed and won. The tests showed that Ben had ulcers and lower-intestine problems that still occasionally flare up and require treatment.

MEDICAID WAIVERS Some states offer Medicaid coverage for children with autism without taking the family’s income into account — only the child’s diagnosis. This is usually reserved for fairly serious cases but is worth exploring, Mr. Sell said.

“This was a godsend for us,” he said. The waiver, he said, allows families access to services that private insurance won’t cover and that they wouldn’t be able to afford otherwise.

With the waiver, Mr. Sell was able to get more home-based speech and occupational therapies for his sons to supplement the sessions they receive at the public school they both attend. Medicaid also covers recreational therapy during which a specialist takes Ben and Joe on hikes and other outings, giving the parents some downtime.

To see if your child is eligible for a Medicaid waiver, go to the Centers for Medicare and Medicaid Services Web site and click on your state.

Because Medicaid is one of the few government lifelines available, waiting lists for waivers can be extremely long. Mr. Sell, for example, waited nine years to get waivers for his sons.

“Just go ahead and get on the list and try not to be too discouraged,” advised Mr. Sell. “Many states are moving faster now.”

GO LOCAL Many autism advocacy organizations, including Autism Speaks and the Autism Society of America, are affiliated with local chapters throughout the country. In addition, most states, counties, towns and cities provide lists of local autism resources and support groups.

It is people in the local groups who will know all the resources available. They can also help you keep up with the latest research, so you don’t spend time and money chasing the many unsubstantiated “cures” out there. They will also have lots of practical advice, like which dentists, optometrists and even barbers are good with autistic children.

“You think going to the barber is no big deal?” Mr. Sell asked. “Just try it with an autistic child.”

OTHER RESOURCES A handful of organizations like Easter Seals and the National Autism Association offer financial help to struggling families. Autism Family Resources and United Healthcare Children’s Foundation also offer grants to pay for autism treatments.

Information scarse on girls with autism

2010-01-18T21:42:00.002-05:00

An interesting article on the other 25%...

Virginia Tries Again... Sort of... HB 303...

2010-01-13T22:21:00.000-05:00

HB 303 Health insurance; mandated coverage for autism spectrum disorder.

Health insurance; mandated coverage for autism spectrum disorder. Requires health insurers, health care subscription plans, and health maintenance organizations to provide coverage for the diagnosis and treatment of autism spectrum disorder in individuals from the date of diagnosis until they reach 10 years of age. This requirement does not apply to individual or small group policies, contracts, or plans, and will not apply to the state employees' health insurance plan until July 1, 2015.

...So if you happen to be under the age of the ten when this passed, you are in luck. Jimmy and whole bunch of other kids like him: too late for you, you aren't worth helping, you aren't worth medical treatment or care. The autism lobbyists are trying to pump parents up to call their delegates and I do think early intervention is crucial, but are we going to put an expiration date on children? I guess all the legislation does to some degree, as treatment is focused on minor children. Six, eight, ten... it seems arbitrary to me. I don't think I can support this legislation.

I'm with Coco

2010-01-13T12:54:00.002-05:00

Two Weeks???

2010-01-12T22:09:00.000-05:00

Eeekkk!!! I am sorry. Tomorrow! I promise!

An Actual Comment I Got About Autistic Kids

2009-12-31T11:43:00.003-05:00

I have had too much time on my hands with the snow days so I commented on an article in a newspaper. I didn't realize there was a direct message function, so this was forwarded to my e-mail. The comment that he made in his post suggested giving autistic kids guns and ammo if they couldn't be institutionalized. The editor has since removed the comment.

"I just want to say I don't mean to hurt anyone's feelings over this issue. I just say what is on my mind and sometimes the truth is hurtful to some. I applaud the devotion and dedication it must take to raise an autistic child, but it's just my opinion that they should be institutionalized and the school tax burden that they cause to skyrocket would deminish. It is no doubt the most difficult thing to ever do, to part with such a child. Tell me why people take them to restaurants to disturb somebody elses peaceful meal?"

I need to get back to work. No more holidays, no more snow days. I have too much time on the Internet with too many people who have entirely too many people who have too much time and opinions. Starting now... going to clean the guest room.

What Happens When Autistic Children Become Adults

2009-12-29T19:45:00.003-05:00

From the Autism Learning Felt blog. What is most stunning in this entry, in one Florida survey, 74% of autistic adults want to work, but only 19% have the opportunity. The government and communities aren't looking ahead to the future for these kids. Parents... we are just trying to manage the day to day. It also mentioned that ugly institutionalization word again. No job, no group home apparently. I don't want an institutionalized life for my son. He deserves more. I want more. I didn't bring him into to the world for this.

U.S. Senate Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform and Cures Acceleration Network

2009-12-26T16:16:00.001-05:00

Does "essential benefits packages" mean nationally mandated? Does this mean we can stop fighting state by state? Does this mean Jimmy will get a chance at the care he deserves even though he lives in Virginia?

U.S. Senate Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform and Cures Acceleration Network

Washington, DC (December 25, 2009) – Autism Speaks, the nation’s largest autism science and advocacy organization, applauds the members of the U.S. Senate for yesterday passing an overall health care reform bill that contains provisions for autism insurance reform, as well as the funding to accelerate the scientific discovery of autism treatments and cures.

The provision for autism insurance reform was introduced in September by Senator Robert Menendez and passed by the Senate Finance Committee with the support of Committee Chairman Max Baucus. The provision will prohibit discrimination in benefits against people with autism by including behavioral health treatments as part of the essential benefits package.

The bill also included elements of the Cures Acceleration Network (CAN) Act, introduced in April by Senator Arlen Specter . Like the CAN Act, this provision of the health care reform bill would create a large new fund for, and focus on, "bench to bedside" research, creating an emphasis on more quickly translating research discoveries into practical medical applications. Autism Speaks was the first disease advocacy group to support the CAN Act.

“We are grateful to Senators Menendez, Baucus, Specter, and their Senate colleagues for passing this health care reform bill, ensuring that families dealing with autism are a part of larger health care reform,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now that the Centers for Disease Control and Prevention has confirmed that autism affects one percent of American children, the need for our legislators to ensure that families can afford the treatments their children need, as well as a redoubling of our federal government’s commitment to science and innovation in the search for a cure, has never been more important.”

“The addition of the Cures Acceleration Network to the health care reform legislation will create the urgency we desperately need at the federal level to push science toward real impact on people’s lives,” said Geraldine Dawson, PhD, Autism Speaks Chief Science Officer. “In the area of autism research, in particular, much needs to be done to translate important discoveries into treatments and therapies that can help individuals living with autism today.”

The Senate and House versions of the health care reform bills must now be reconciled and approved by both bodies before presented to President Obama for his signature.

Have Yourself a Little Taps Christmas

2009-12-25T17:02:00.004-05:00

Santa hit it out of the park this year. Meet Disney's Little Taps. Sadly available only in Asia, we had to buy ours on Ebay from a seller in Hong Kong. Grandma got the fifth from someone in Oregon, but it was Asian in origin too. It's sort of the perfect autistic toy - ordered, repetitive, soothing. Jimmy's been watching these Little Taps videos on You Tube since the end of the summer and he loves them. He didn't put these things down for nine hours today. He's just delighted.

I am putting together an e-mail to the powers that be at Disney to see if there is any chance these things will be released here in the States. The mark up in the secondary market might kill me long term. But seeing Jimmy so happy, so engaged with Christmas... it was so worth it.

An e-mail I received regarding concert tickets... Concert Fans Beware!!!!

2009-12-22T18:50:00.001-05:00

Concert Fans Beware!

There’s a train wreck about to happen and consumer groups say YOU will be the victim if the two most powerful corporate interests in the live concert business get their way. But you can help stop the merger of Ticketmaster and Live Nation. The government needs to hear from music fans now. Tell the Department of Justice that you’re against these monopolies amassing illegal power over consumers, before it’s too late. antitrust.complaints@usdoj.gov

As a concertgoer you have already felt the pain, and if Ticketmaster and Live Nation get their way, it’ll get worse. In the last 12 years, since Live Nation and its predecessor started its widespread takeover of the concert industry, concert ticket prices have shot up 82% while the consumer price index has gone up just 17%*. We are concerned that if the two concert industry behemoths, Live Nation and Ticketmaster, are permitted to merge, the variety and quality of artists coming to local venues will be affected, and your costs could rise further and faster.

Five of the nation’s most prominent public interest groups called on the Department of Justice to block the proposed merger of Ticketmaster and Live Nation:

“Consumers deserve a fair deal in the entertainment marketplace, not the fewer choices and higher prices that would result from this merger,” said Susan Grant, Director of Consumer Protection at Consumer Federation of America

“This merger is an insult to both musicians and consumers,” said James Love, Director of Knowledge Ecology International

“We cannot envision a remedy that would ease this chilling impediment to competition… In the absence of other effective, expeditious remedies, the proposed transaction should be prohibited.” American Antitrust Institute White Paper

As described by Senator Herb Kohl (WI) in the House Antitrust hearing, “This merger will not only expand Ticketmaster’s control of the ticketing market by eliminating a competitor, but it is also creating an entity that will control the entire chain of the concert business – from artist management to concert promotion and production to ticketing and ticket resale.”

“This merger would be a disaster for consumers. Nothing short of blocking this takeover of the ticket market by two industry behemoths will be acceptable,” said National Consumers League Executive Director Sally Greenberg

“As president, I will direct my administration to reinvigorate antitrust enforcement. I will step up review of merger activity and take effective action to stop or restructure those mergers that are likely to harm consumer welfare…,” said Senator Barack Obama when he was campaigning for the presidency.

If you agree with the consumer groups and lawmakers, make a difference and LET YOUR VOICE BE HEARD NOW.

Send a message to the Antitrust Division of the Department of Justice telling them you support President Obama’s campaign promise to protect the American public from abusive monopolies.

antitrust.complaints@usdoj.gov

To learn more, check out:

ticketdisaster.org

Two Feet of Snow...

2009-12-20T00:04:00.002-05:00

I guess timing is everything. I had surgery on Friday afternoon that ran long and was discharged from the hospital very late in the evening... into a snowstorm. I thought they said it wouldn't begin until after midnight. They have already called school for Monday morning, at least for me. Jimmy is completely screwed up sleepwise - just a bundle of energy from being inside all day with no running around. Jacob is crashed out after having "helped" his dad shovel snow. It was a fruitless task as it came down so quickly. I have been up and down between getting sedatives out of my systems while putting painkillers into my systems. Odd timing for a blizzard, but for me some good enforced down time to recover and to hang out with my kids.

1 in 110...

2009-12-19T23:42:00.004-05:00

A slight improvement from the initial 1 in 100 that I heard a few months ago, but the CDC is officially reporting 1 in 110 as the autism rate in children, with the rate in boys at 1 in 70. It is still stunning to me that we are arguing about insurance coverage and educational services in light of these statistics. Look around at the kids you know. Name one thing that is more prevalent these days than autism. I think the only the thing you can look and see is asthma and ADHD. As quoted in the linked article, ""Autism spectrum disorder" is an umbrella term for three types of neurological disorders that can lead to significant social, communication and behavioral challenges." Neurological. Yet parents are fighting state by state to get autism covered under health insurance policies and we are completely unclear what is going on nationally within health care reform regarding autism. (Just when I think I have a handle on that, it seems like something has changed yet again...) We fear coming educational budget cuts. I worry what tone outgoing governor Tim Kaine has set in slashing mental health funding on his way out of office. (And he is running the DNC for the next few years? I really hope they don't call here looking for money.)

1 in 110. When does it become a crisis? When each and every child is severely autistic? Or when that severely autistic child is yours?

I will admit, it wasn't on my radar until it happened to me. But autism changed the world view of our extended family as they have seen us struggle. With these number, if you don't know someone who is struggling with raising a child autism, with having the therapy they need uninsured, and their schooling inadequate for their disability, it will not be long before you do. And you won't have to look any further than family photos.

Insurance Companies Refuse Autism Coverage

2009-12-15T20:47:00.004-05:00

An older article, but the quote is why I love Bob Marshall, for all his quirks....

LEESBURG, Va., June 21, 2009

Insurance Companies Refuse Autism Coverage

Total Cost For A Child Can Reach $5 Million, But Few States Mandate Coverage; Is Change On The Horizon?

By Thalia Assuras

(CBS) An estimated one in every 150 children in America has autism and the number of reported cases is growing.

The total cost of caring for an autistic child can reach a staggering $5 million.

Parents are increasingly demanding that insurance companies cover the newest treatment.

CBS News correspondent Thalia Assuras visited one such family in Virginia.

At 7 years old, Tristan Oldham is the big brother in this rambunctious trio. A couple of years younger is Gareth - bubbly and playful until he was two.

That's when "he slowly stopped playing. He would sit in a corner and chew on his shirt and play with the shadows," said mother Cassandra Oldham.

Gareth was diagnosed with autism. Nine months later, as Cassandra and Bill Oldham struggled to cope with Gareth's condition, they suffered another blow. Their third child, Korlan, is also autistic.

"I can't even describe it in words really. Just pain. Pain. Gut-wrenching more pain," Cassandra Oldham said.

The emotional anguish was multiplied by financial stress.

Intensive, one-on-one behavioral and speech therapy called "applied behavior analysis therapy" or ABA helps the boys. But it costs up to $7,000 a month per child for the recommended 40 hours per week. The Oldhams struggled to pay even half the amount.

"Which child do you choose? We don't have enough money to pay for therapy for both of them," Cassandra Oldham said.

The Oldhams have insurance, but not for autism therapy because Virginia isn't one of the seven states that mandate coverage. Businesses say adding autism to the list is too expensive.

"Prosthetics, mental health, stress, hypertension: all of these things lead to a cumulative effect that runs the risk of putting the insurance out of reach for the average business person and the average employee working for that person," said Hugh Keogh of the Virginia Chamber of Commerce.

Cassandra Oldham and state Delegate Bob Marshall don't buy it. They are pushing legislation that would force insurers to cover ABA, and say the costs of a policy would be minimal - somewhere between $2 and $4 a month.

"There are real children whose lives are going to be destroyed because we are acting indifferent to them. That's not a moral response," Marshall said.

But in tough economic times, states like Virginia are trying to figure out how to do the most good with fewer resources.

"I have a lot of fear when I think about the future and where my kids will be at," Cassandra Oldham said.

They've thought about moving to a state where their boys can get all the help they need.

The Dolphin Feeding

2009-12-13T00:37:00.003-05:00

So, one of the first things we did was the dolphin feeding at Sea World. We got in the line, bought the fish, and briefly waited. We came in, DH took the video camera to try to get footage of us feeding the dolphins and we set to it. Jacob is doing okay, but I have one hand on Jimmy. With his free hand, he is taking off his socks and shoes, wanting to go for a swim. I am thinking this isn't going well. Jacob is pushing up on the edge to get closer to the dolphins, so I can see him going in too. One of the trainers sees me struggling and asks if she can help, looking specifically at Jimmy, who wants to swim with the fishes. I introduce Jimmy. The next thing I know, she blows her whistles and calls over our own personal dolphin to feed, pet, and commune with. It was truly amazing. We were over the moon and I was moved by her generosity. It was the greatest gift to both my boys, but most especially Jimmy.

Sea World

2009-12-13T00:27:00.003-05:00

Sea World was just huge for Jimmy. It wasn't just that we went through every exhibit. Jimmy would drag us through multiple times. He was so excited to feed the dolphins, he tried to take off his shoes to go in for a swim with them. He would wake up every morning and look out the window, across the parking lot, towards Sea World, begging to go. He loved every bit of it. So did Jacob.

The holiday photo with Shamu...

Jacob in conversation with Zap and his elf friend. This was hysterical. They were street performing elves in the waterfront area and I think Jacob spent 20 minutes with Zap, just talking to him. It was just kind of amazing. Jacob still talks about him, asking if he's coming for Christmas. Forget Santa, it's all Zap now. Whoever this guy was, he is amazing. If you stumble across this blog, thank you for making my kid feel so special!

Jacob in the tank in the new Manta exhibit, under the coaster. Kind of cool.