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.
Saturday, October 08, 2011
Wednesday, September 28, 2011
Miller Touts His 100% Small Business Voting Record on the Backs of Autistic Kids
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.
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.
Saturday, September 24, 2011
ADHD Symptoms Worsen Quality of Life for Those with Autism
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
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
Monday, September 19, 2011
Welcome to puberty...
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.
Sunday, September 18, 2011
Autistic and Seeking a Place in an Adult World
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
Tuesday, August 23, 2011
DC's Shakes, Rattles, and Rolls
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.
Saturday, July 30, 2011
Science Article: One Problem, Many Paths
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...
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.
Friday, July 29, 2011
So... Natalie Munroe...
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.
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.
Friday, July 01, 2011
What is wrong with this world?
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!
Sunday, June 26, 2011
A Big Week
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.
Sunday, June 19, 2011
Backpack, Backpack
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.
When I got him back to his room I saw what was on his computer. Inspiration.
Saturday, June 18, 2011
Summer Starts With a Bang...
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.
Friday, June 10, 2011
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.
"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.
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
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.
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.
Tuesday, February 15, 2011
Autism column costs local paper its credibility
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."
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:
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 |
Monday, February 14, 2011
Justice Department warns Virginia of suit over failures
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.
"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.
Wednesday, February 09, 2011
Donations to people who voted against the autism bill...
At least the big ones in the House of Delegates. Kind of interesting....
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.
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.
Tuesday, February 08, 2011
One more thing...
One more thing for me to do, but this seems like fun. I am on the Patch's mom council for Manassas Park.
Sunday, February 06, 2011
Something Jackson Miller Did Right in Richmond
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
"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?
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?
Monday, January 31, 2011
Disappointing...
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...
A person representing my community should put the health and well being of children first, regardless of party...
Saturday, January 29, 2011
The Companionship of Depression
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.
Monday, January 24, 2011
My friend Michelle is an amazing mom!!!
My best friend's sister was featured on this blog as an amazing Mom... and she is!
Saturday, January 22, 2011
ADHD has joined Autism...
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.
Hands full. Officially.
Sunday, January 02, 2011
Happy New Year
Missouri has autism insurance coverage today. They also have fines for texting while driving. Come on Virginia, get with it...
Sunday, December 12, 2010
Sunday, November 28, 2010
And the TSA makes a 4 year old disabled child take off his leg braces to walk through the detector...
The stupidity is mind numbing!
Saturday, November 27, 2010
X-Ray Nation | TSA Glass Box Mother Over Stored Breast Milk
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!)
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
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.
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.
Thursday, November 25, 2010
Happy Thanksgiving
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| 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...
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.
"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.
Sunday, November 21, 2010
Child strip searched by the TSA... this weekend!
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.
Saturday, November 06, 2010
Texas to drop out of Medicaid?
A frightening post at Plinking Reality. Would Virginia do such a thing?
Tuesday, October 26, 2010
Tuesday, October 05, 2010
Off the backs of the disabled...
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.
"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.
Wednesday, September 29, 2010
Thinking of Sharron Angle, those who thing Autism isn't real, and people with disabilities shouldn't be brought into this world...
About the eight minute mark, please...
Saturday, September 25, 2010
Sharron Angle Redux: Autism Excuse Still Not Making Any Sense
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.
"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
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.)
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.)
Thursday, August 19, 2010
Attention Jennifer Aniston
... 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.
Thursday, August 05, 2010
Jimmy's photo collection
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| The image labels were Baby, Cat, Dog Olive, Mom2, and Trick Daddy. He put them all in a folder. His perfect family? |
Wednesday, August 04, 2010
Tuesday, August 03, 2010
What I have been up to...
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.)
Sunday, July 11, 2010
Crying babies, laughing Jimmy
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...
Saturday, June 19, 2010
Mother drowns child with autism: I love Scarlett, I hate autism
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...
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.
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.
Sunday, April 18, 2010
Autism Challenges American Science to Seek Cure
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.
Saturday, April 17, 2010
I think Gov. McDonnell hates my son... he wants to take services again
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.
Please take the time to help those on community based waivers keep the services that they have the way they have them.
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!
Tuesday, April 06, 2010
To tell you how things are going...
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.
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.
Sunday, March 28, 2010
Why Sandra Bullock Might Consider Staying
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.
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
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.
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.
Saturday, March 27, 2010
O Captain My Captain, Autism Is Calling
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?
Saturday, March 13, 2010
Have these researchers been to my house?
"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.
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.
Monday, March 08, 2010
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