Sunday, December 12, 2010

I love Ozzy!

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!)

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.  

Thursday, November 25, 2010

Happy Thanksgiving

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.

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 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.  

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.  

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.)

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

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


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

Technical difficulties...

Yes, I am working on it.

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.

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. 

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

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

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

Elimination of the proposed 2/3 cut to respite services

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

Elimination of proposed freeze on HCBS Waiver enrollment

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

Elimination of proposed cut to Assistive Technology and Environmental Modifications

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

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

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

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

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

More information about these proposed amendments can be accessed on Governor McDonnell's website.
The bottom line: In order to defeat proposed amendments that are harmful to people with intellectual and developmental disabilities - we need a simple majority in the House of Delegates OR Senate to vote NO to these amendments on Wednesday!
Please take the time to help those on community based waivers keep the services that they have the way they have them.

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.

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.

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.

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.

Sunday, February 28, 2010

As much as Jenny McCarthy makes me crazy...

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

"An article this week in Time Magazine inferred that her son, Evan, had a different neurologic disorder (Landau-Kleffner syndrome)—NOT AUTISM.  Take a look here for a nice summary in Hollywood Life.   According to their report, Ms McCarthy has reversed her position and now does not believe that the MMR vaccine was the cause of her child's developmental problems.
If this is true, her kid never had autism at all and she's suddenly changed her mind about vaccines. OK. The only problem is, there's a lot of blood on her hands. I'd like her give a public apology or have her volunteer for a public service campaign on vaccines with the CDC. It won't take back all the damage she has done, but it would at least it would show that she had some acknowledgment of personal responsibility. A small article in Hollywood Life is not enough, lady. But,what am I thinking? She's a celebrity. She has no personal responsibility."

Saturday, February 27, 2010

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

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

Tuesday, February 23, 2010

Betrayed by Bob Marshall

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

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

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

None of this okay.

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

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

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

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

....One more thing...

Gov. McDonnell, before saying this:

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

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

Thursday, February 18, 2010

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

The governor’s proposal to cut $63 million from in-home services for people on Medicaid waivers assumes that half of them won’t get any services at all. “The need is not going to be met,“ said Heidi Faustini at The ARC of Virginia.
So the after hating on Kaine for proposing respite cuts, the other shoe has dropped and come to find out that instead of finding other ways to cut the budget, Governor McDonnell is going to do it by cutting education and services to the disabled.  After finally getting services in place for Jimmy, the new governor, the pro-family, pro-life governor wants to purge 50% of those getting the EDCD waiver off the roles.  He also wants to get rid of the consumer directed hire and force everyone to go through agency hiring.  Which side of the cut Jimmy would be on of that dreaded 50%, I don't know, but I don't want to wait a year to find out.

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

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

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

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

Wednesday, February 17, 2010

Is it spring yet?

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

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

Saturday, February 13, 2010

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

A great commentary on the whole Sarah Palin situation, sharing my favorite segment:
Palin wasn't wrong about the inappropriateness of the remark, for which the president apologized to the Special Olympics before the segment aired. But were her objections primarily those of a wounded mother -- or those of a heat-seeking politician? Will we be hearing from Palin every time someone uses the R-word or makes a lame joke? 
Well, no, not every time. When Rush Limbaugh used "retard," suggesting a "retard summit" at the White House, it was "satirical," Palin recently explained to her Fox News colleague, Chris Wallace. When Emanuel used it, it was name-calling. It isn't clear whether Palin considered Rush's memorable mimicry of Michael J. Fox's "fake" Parkinson's disease symptoms another demonstration of satire or mere hideous cruelty. 
Given that Palin obviously made an excuse for Limbaugh, whose stab at humor was nothing resembling satire, means that her "teachable moment" via Emanuel was really using her child as a political tool.

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

I am in the mood for shoes...

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

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

Friday, February 12, 2010

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

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

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

(customer comments and service email)

300 N. Lake Ave., Suite 1111
Pasadena, CA 91101
Web contact form
FAX 626.585.4040

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

Online comment form

Hotwire Corporate Headquarters
333 Market Street, Suite 100
San Francisco, CA 94105
1-877-HOTWIRE (468-9473)

Sleep Number Bed

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

Oreck Upright Vacuum Cleaners
Oreck Corporation
100 Plantation Road
New Orleans, Louisiana 70123
Online contact form

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

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

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

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

Blue Emu refuses to give a contact other than their generic "info" box: <>

Lumber Liquidators
Toll Free: 877-645-5347
Contact list:
Avacor (hair loss treatment)
(customer comments email)

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

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

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

Life Quotes, Inc.
32045 Castle Court
Evergreen, CO 80439

Select Comfort Corporation
6105 Trenton Lane N
Minneapolis, MN 55442
Phone: 763-551-7000
Fax: 763-551-7826, Inc.
1 Civic Center Plaza, Suite 506
Poughkeepsie, NY 12601

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

Pfizer Inc
235 East 42nd Street
New York, NY 10017

What I Just Posted on Facebook...

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

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


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

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

Tuesday, February 09, 2010

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

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

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

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

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

Wednesday, February 03, 2010

A local argument that bears repeating...

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

Journal Retracts 1998 Paper Linking Autism to Vaccines

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

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

Sunday, January 31, 2010

Stealing from Facebook again...

From the Virginia Autism Project:

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

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

Sunday, January 24, 2010

From Dlisted...

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

Hot Slut Of The Day!

Posted using ShareThis

Saturday, January 23, 2010

Good news from Facebook!!!

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

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

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

Word to Live By

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

Conan O'Brien

Friday, January 22, 2010

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


Dealing With the Financial Burden of Autism

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

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

Autism trends, treatments and therapies routinely make headlines. Often overlooked, though, is the financial burden for many families with autistic children.
Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.

That figure includes medical costs like doctor visits, prescriptions and occupational and speech therapy, as well as expenses for things like special education, camps and child care, said Michael Ganz, the author of the study, who is now a health care consultant.
“It can cost $3.2 million to take care of an autistic person over the course of his or her lifetime,” the study said.

More families are grappling with the disorder than ever before. One of every 110 8-year-old children in the United States has been diagnosed with autism — and one of every 70 boys, according to the latest survey from the Centers for Disease Control and Prevention, released last fall. That is up from one in 150 children in a comparable report released in 2007.
“The numbers are just amazing,” said Pat Kemp, executive vice president of the advocacy group Autism Speaks, “Unless we attack this like a national health crisis, we’re going to have a huge economic crisis on our hands.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“This was a godsend for us,” he said. The waiver, he said, allows families access to services that private insurance won’t cover and that they wouldn’t be able to afford otherwise.
With the waiver, Mr. Sell was able to get more home-based speech and occupational therapies for his sons to supplement the sessions they receive at the public school they both attend. Medicaid also covers recreational therapy during which a specialist takes Ben and Joe on hikes and other outings, giving the parents some downtime.

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

Because Medicaid is one of the few government lifelines available, waiting lists for waivers can be extremely long. Mr. Sell, for example, waited nine years to get waivers for his sons.
“Just go ahead and get on the list and try not to be too discouraged,” advised Mr. Sell. “Many states are moving faster now.”

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

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

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

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