Where We Are Currently

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

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

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

Jumping Around at the Jubilee and Clifton Day...

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

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...

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...

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

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

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...

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

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

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

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

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.

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.

Okay, I need to catch up...

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

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!

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.

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.

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. 

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.

Read more: http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=90473#ixzz1OvjHRSU6

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.

I'm back...

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

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."

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

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...

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...

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!!!

Oh my gosh... too funny!

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?

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...

Just a reminder...

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.

My friend Michelle is an amazing mom!!!

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

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.

Happy New Year

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