Philadelphia: Will Survived to the Great Rejoicing of All!

Last week during April vacation we went to Philadelphia. While there we went to one of the dumbest museums on the face of the earth, The Constitution Center. After going through it I only had one thought – “that’s 70 bucks I’ll never see again.” We went to Independence Hall Visitor’s Center and while we were talking to a lady at the counter Will disappeared. I turned around and he was gone. We looked around the building and outside for about five minutes then I told my husband to find a park ranger. Will had left the building, crossed a street and climbed into a horse drawn carriage. When he wouldn’t get out the driver called a policeman over.

We saw the Mint and the Federal Reserve (and I have a bag of cut up money to prove it). We went to the Reading Terminal Market to Amish watch for lunch. Then went back to see the Liberty Bell and Independence Hall. At which time Will had his second near death experience. We walked outside the visitor’s center. My husband was holding a door open for a woman with a stroller. I went outside to see Bri trying to hold onto Will and him struggling to get away. A car whizzed by on the street, and then Will broke free and ran into the street. I ran after him. I didn’t look to see if a car was coming because I, quite frankly, didn’t want to know my death was eminent. But we both survived. All I can say about the rest of that day was at least it wasn’t my kid that got his knee stuck in the railing at Independence Hall! And that $35 doesn’t buy a lot of ice cream. We went to the Franklin Institute, which the kids loved, on Saturday morning; then drove out to Valley Forge.

To sum up my perceptions of Philly: most importantly, I answered the question of who makes the best Philly Cheese Steak – Pat’s. Even with Cheese Whiz on it. (I didn’t realize when I ordered it that Cheese Whiz was the default cheese because I don’t live in that universe – thank goodness!) But it was still better than Geno’s even though theirs had provolone. Secondly, there is a lot of horn honking -- MORE than in New York City. I think it’s a rougher city than Boston. Beautiful architecture; tons, tons, tons of traffic; I wouldn’t mess with the people though, because I think they’d kick my butt! Philly, I don’t think I’m woman enough to live there.

Girls are Magic

On Sunday, one of the teachers played a couple of notes of a song then asked the kids to guess the song. A couple of girls were excellent at the game and guessed a couple of songs in a row. The teacher asked them in amazement how they did it. Jacob piped up from beside me, “Because girls are magical and boys aren’t.”

And We Have A Runner

While I am sincerely and deeply grateful to the seven policemen who returned Will home a few Saturdays ago, due to detecting where he lived from the autism magnets on our cars; they (well, really anyone who doesn’t live it) don’t really get it. One of the policemen was really disturbed that Will was wearing pajama bottoms and not wearing shoes. I was just happy he was wearing pants! I didn’t say anything about that because I felt he would further lower his opinion of my mothering skills, but it took four months before he would wear pants, a coat, and boots outside in the snow!

So pants – smants.

Texting

During our April vacation I often heard a little ding, signaling that Bri was receiving a text. One time I asked her who was texting her. She said she didn’t know because three people were texting her at the same time.

I’m beginning to suspect that she’s more popular than I am.

Can You Hear Me Now? Why Yes, Yes I Can

What does it mean when your child has a phone that costs more than twice what yours does?

It just means that she texts and I don’t.

Yes, we broke down and got Bri a phone for her birthday. So, she is no longer the only 7th grader at her school that doesn’t have a phone. Here hoping she doesn’t lose it and Jake stops asking for one!

Beautiful Covergirl

Last night I overheard Will say, "Covergirl." Then he ran over to the sink and took out my mascara. He put some on his cheek. We thought he was adorable. He ran back to the bed and played for a minute. Then he said, "Beautiful covergirl." I went over to rescue my makeup. But by the time I got over there, he had actually put some mascara on his eyelash! He wasn't happy with the result and was pulling it off his eyelash with his fingers. I can't believe he managed to get it on his lash. Given half a chance I believe he would have done both eyes!

I knew there was a job for my boy -- make up artist extraordinare! Everyone, get in line.

Progressive Quiz

I found a fun quiz you can take to find out how progressive you are.

Well, I'm Surprised!

On Monday, I read Parents, don't be immune to vaccine truths by Rahul Parikh in the Los Angeles Times. I sent the author an email about it and he responded to me. I was really surprised. We, of course, disagreed with each other but I’m happy that he read my email.

Dr. Parikh,

I read with interest your recent article. I appreciate your interest in this subject. I have four children, two of whom became autistic two weeks after routine vaccinations.

I hope you have interest in a parent's perspective on the link between autism and vaccines and why we no longer trust the medical profession to always have our children's best interests at heart.

It was interesting that you started your article with a heartbreaking story of a child dying from a vaccine preventable disease in a third world country. Even if every parent in the US stopped vaccinating their children, mortality rates would not be similar to those in the third world because we have access to clean water, soap, sanitation and first world medicine. But I understand that a child sick in a hospital bed in the US hooked up to antibiotics, that probably will recover, does not present as visual an image even if it is more accurate.

I read that you believe that “doctors like me haven't been very good at communicating with you.” On the contrary, you are extraordinarily good at communicating! I never considered not vaccinating. The problem is that once I started doing my own research rather that accepting everything the medical profession said; I realized the medical profession was lying to me. Fewer than 10% of vaccine adverse reactions are reported. Even as severe, in the case of my own niece, as seizures. When her parents expressed concern to their daughter’s pediatrician he told them a seizure wasn’t a serious reaction and gave her the next shot in the series. This time she seized again and stopped breathing. The risks are understated and the benefits are overstated.

You mentioned the “more than 30 studies vouching for the safety of vaccines.” The problem with the studies is that if one has the motivation to look into them they find tremendous flaws. For instance, through the Freedom of Information Act we found out that in the study the CDC did on the correlation between thimerosal and autism. Initially, they found children who received thimerosal in their vaccines were 2.6 times more likely to be diagnosed with autism. They added 30,000 more 1 year-olds to the study and brought the number down to 1.6. They released the later number. In the frequently mentioned Danish study, two flaws I’m most concerned with are that it was a pharmaceutical company that studied the safety and that the study did not last long enough. There were 3 cohorts in the study. The average age of diagnosis for autism in Denmark over 4 years and over 5 years for Autism Spectrum Disorder (ASD); only the oldest cohort reached the average age of diagnosis and the youngest group was the most likely to not have been vaccinated with the MMR because of a widely viewed TV program that linked the MMR with the development of autism. Most doctors read the press releases and look no further.

The CDC has a conflict of interest. They are in charge of promoting vaccines and ensuring they are safe. I read many years ago in the Boston Globe that the AAP recommended that infants receive the Hep. B at 6 months rather than at birth unless their mother is infected. A spokeswoman for the CDC said they were not changing the schedule because they didn’t “want to undermine parental confidence in the vaccination schedule.” My children’s pediatrician was unaware of either statement and was offended when I told him.

Many parents, unfortunately, have the motivation to invest hundreds of hours of study into vaccination.

I believe that pediatricians become doctors because they love children. I understand having a natural aversion to accepting that something you did with the best intentions caused significant harm to a child. I struggled with my guilt that I let my children be vaccinated and thus have life-long disabilities. What’s done is done. Moving forward --let’s first cause no harm.

Pediatricians do make money off vaccinations. That’s ok. I don’t expect you to treat my children for free. I appreciate your education. I appreciate that I can bring my child in for treatment. An article in the Boston Globe mentioned that in the average doctor’s office, proceeds from vaccines pay for the salary of a nurse. In many states, doctors also receive money for having their patients vaccinated. There are financial incentives.

As a parent, I am no longer willing to be patted on the head and sent on my way. That didn’t work out well for me the first time and it won’t happen again. The first step is to open up intellectually honest dialogue. We’ll try to tone down the anger if the medial profession will start taking an honest and independent look at the safety of vaccines.

And Yet Another Reason Why I Love My Husband

He sends me pictures like these with the statement:

Why you need more education than a Madrassah.

How fortunate that the protester pointed out that it's Zionist juice. I would have assumed that juice was non-denominational.

Another Conversation with my Husband

“If you were a TV character who would you be?”

“Hmmmm, let me think about it. Oh, Miss Marple because she smart, frumpy, doesn’t sleep around.”

“Really? I didn’t see that one coming.”

“Why not? Who would you be?”

After a two minute pause, “Jacques-Yves Cousteau.”

And he really would.

Here's some sugar, Sugar

The Daily Show With Jon Stewart	M - Th 11p / 10c
Tea Party Tyranny
thedailyshow.com
Daily Show Full Episodes Economic Crisis Political Humor

To Quote my Husband ...

"I got so and so's cell phone number, score!"

"Who?"

Then in response to my laughter. He said, "Getting important women's numbers is part of my job and a key measure of my success."

I'll admit I thought it was a pretty funny comment.

And Another One’s Down

Yesterday, Jake ran into the house to tell me that Lizzy had thrown up on the bus four times. She came trudging into the house carrying a brown bag. The poor little girl threw up a few more times once she was home. This morning Jake mentioned his stomach felt weird. I decided he should stay home from school. It was a good call. He threw up about 10:00am. At 11:00am, I got a call from the nurse at Bri’s school.

My stomach started hurting about a half hour ago; so, I figure I’ll throw up in about fifteen minutes. Only two more to go.

Still Overlooking Autistic Adults

". . . The number of autistic children expected to need extensive adult services by 2023 -- more than 380,000 people -- is roughly equal to the population of Minneapolis. If a town were created to house this group of people and their caregivers -- for you can't separate the two -- it would exceed the population of all but six U.S. cities. If they formed a state, it would have four electoral votes. . . "

Linda H. Davis, Washington Post

Arguing with a Brick Wall

Will got off the bus, buried his head in my chest and hugged me tightly. “My name is Michelle.” He greeted me.

Usually I ignore it, but today I corrected him. “I’m Mom.”

“My name is Michelle. My name is Michelle. My name is Michelle.” He said a little louder and faster.

“Mom,” I repeated as we walked, Will backwards and me forwards, hugging tightly.

“My name is Michelle.”

“Mom.”

“My name is Michelle.”

We repeated our lines all the way into the house.

Finally, once we were inside, he called me mom. But when I screamed in excitement; he went back to calling me Michelle.

I’m stuck in the Myth of Sisyphus. And we all know who the rock is.

It’s Genetic

Me: “Jake, come here so I can comb your hair. Jake … Jake?”

Jake: “I’m busy reading.”

Me: “You’re a bookaholic! Books are your drug of choice.”

Jake: “You need to stop talking now.”

Fourteen Studies

I just ran across this website detailing problems with studies that are often quoted relating to autism and vaccines.

Fourteen Studies

What we don't know can hurt us.

Taking One For The Herd

Spend any time at all reading about vaccines and you’ll hear over and over again about Herd Immunity. You’ll read that your children should be vaccinated for the benefit of “the herd.” The herd is a fancy way of saying “everybody else”. You hear people say vaccination choice is a first world luxury. It is. That’s why I live here. If I didn’t, I’d exert every effort to get to the first world! The reason vaccinations are a first world luxury is because #1. We have access to clean water, soap and good sanitation! Rates of disease drop dramatically once people have consistent access.

http://content.nejm.org/cgi/content/full/359/8/784

http://www.iom.edu/Object.File/Master/59/278/Tauxe.pdf

#2. Modern medicine: I have access to hospitals, trained doctors and specialists, lab tests and antibiotics. In the comments posted after that “Momversation” I read over and over again the comment “vaccinate or die.”

Really? . . . That’s your argument? At best, that argument shows a lack of understanding over what spreads disease and what modern medicine can do to treat it. In many third world countries that lack access to clean water, medical treatment, and sanitation that is the case. But in the first world it’s different. Even under the unlikely scenario that every single person in the US stopped vaccinating their children our rates of death would not approach the rates in third world countries because conditions here are different.

Regardless of what we hear about vaccine rates dropping the CDC director of the immunization services division Lance E. Rodewald, MD “says vaccination rates are still high among young children in the United States. ‘Coverage has never been higher, and we want to keep it that way.’"

But what happens when someone is damaged by a vaccine? I’ve read the "sad but necessary” newspaper articles. They reference the National Vaccine Injury Compensation Program but that program tends to be more theoretical for most injured people.

I’ll tell you what happens after your child takes one for this herd. After your child is damaged to benefit the herd, the herd complains about how much this damaged member’s education and care costs them. They complain that you want to much and that you’re inconvenient. They like to give you disapproving looks in stores if you have the nerve to take your child out in public. And their children are cruel to yours.

No one from the herd has ever stopped by my house and said “thanks” before dropping off a check.

Collection of Articles

Here is a link to various articles relating to vaccines and mercury. It even touches on the MMR and Wakefield.

Eight Very Loud Girls

Bri had a slumber party on Friday night. I thought after Jake’s slumber party that it was only boys that were extraordinarily loud. I was wrong -- but not completely. But much like how a woman forgets how exquisitely painful childbirth is, at least enough to have another child, the mind protects itself against remembering what a pain in the butt having a birthday party for one’s child is!

I made cake balls for Bri’s cake but my cake balls did not look like Bakerella’s.

Saturday morning my husband asked me if a lot of the girls had taken showers. “No, none of them,” I replied. “Why?” Answer: Our hot water heater was leaking. Causing running around, mopping up with towels, trips to the hardware store and breakfast dishes not to be washed.

Flash forward a couple of hours; I realized Lizzy was missing her friend’s birthday party. So, I drove her out to Pump It Up in Shrewsbury We got there in time for cake. But that night as I tucked her in bed she told me that she forgave me. It was very sweet! She was a very good sport about the whole thing.

Good Friday

My kids get all the Catholic and Jewish holidays off from school. So, they are all home today and I’m cracking the whip trying to get ready for Bri’s slumber party. I’m trying to get stuff done and Jake comes over every 4 minutes and interrupts me. He needs me to tie the balloons. At least I don’t have to blow them up, blowing them up hurts my brain.

Vaccines

Someone asked for more information concerning my views on the link between autism and vaccines. I wrote one post shortly after the government conceded that vaccines caused Hannah Polling to become autistic. Clearly, I wrote it in the moment and was too optimistic.

There are at least three major theories regarding the link between autism and vaccines. I believe that it is generally accepted by the "vaccines as trigger" groups that there is a genetic component or predisposition to develop autism in a susceptible child after an environmental trigger.

1. Autism is caused by exposure to thimerosal. Evidence of Harm is a great book that clearly sums up a lot of the controversy and evidence supporting a link between thimerosal and autism.

2. Another theory is that the MMR shot causes autism. That is pretty controversial because it caused rates of vaccination with the MMR to plummet in England. Andrew Wakefield is currently in court over the issue. I follow the issue at The Age of Autism and I subscribe to the Schafer Autism Report.

3. Autism is caused by some combination of both thimerosal and the MMR.

The reason this issue has not died is that up to 2/3 of the parents of children with autism believe it was triggered by vaccines. Independent and honest studies have not yet been done. What has generally happened is that some research is thrown together, the media, the CDC, the NIH, et al. announce that yet another study definitively proves there is no link. Parents, doctors, researchers look at the studies and see lack of independence, faulty criteria, etc. and reject the study because of multiple flaws. It convinces no one who was not already convinced; yet, the average person, doctors, professionals, who don't even give it a cursory look, assume it was a well designed and valid study.

I'm going to have to break this down further because I didn't even touch on genetics and that's a huge issue. Nor did I get to which theory I believe triggered it in my kids.

Let Me State This As Clearly As I Can

I listened to a "momversation" on a blog that I read, Dooce (my comment is #360). I don't usually watch the momversations because they're often dull (meaning they're usually about something I don't care about) and come with a commercial and if I want to watch a commercial I can walk downstairs and turn on the TV. But, of course, because this one said the magic word "vaccination" I was compelled to watch it even though I knew it would make me crazy!

It didn't. But that's because the moms were respectful and thoughtful, which quite frankly, is as much as I can expect. The comments were full of foolish and uninformed statements like Wakefield's data was made up. Actually ... his case is in court right now. That means that it hasn't been. At least not yet ... wink. And someone brought up the Danish Study. Yes, that one. The study that was done by a pharmaceutical company that surprisingly enough cleared a pharmaceutical product. The study that the 2 of the 3 cohorts didn't reach the average age of diagnosis for autism and unexpectedly found that there weren't very many autistic kids in their study. Go figure.

Just to be clear: Vaccines are one of the environmental triggers that cause autism in genetically susceptible children.

Monday

No more driving the kids to and from Tae Kwan Do -- hurray! Now I merely chauffeur Bri to piano and Will to MyGym. The "leave the house at 4:00 and get home between 7:00 and 7:30" was KILLING ME!

Yesterday, on the way to Bri piano lesson (for which we were late) I smelled a pungent odor. I asked Bri if she was wearing perfume. (If so, I planned to tell her to never wear it again!) She wasn’t. Will found a spray bottle of sunscreen and sprayed it all over his hands and pants. Bri fished it away from Will but he rubbed it in his eyes and the car still smells.

Monday, we need to talk!

Animorphs

“Mom, if you were an animal what kind of animal would you be?” Jake asked.

“Oh, a monkey for a day because I’d love being able to climb and swing in trees, then a cougar or a cat."

"A house cat or a wild cat?" Asked Bri.

"Hum . . . let me think about it. Jake what kind of animal would you be?

“I’d be a deer for a week, then when a cougar tried to eat me I’d turn into a megalodon.”

Bri wanted to be a cougar first than a bat because she wanted to fly. And Lizzy wanted to be everything. I told her that would be one ugly animal!

School House Rock

I took Lizzy and Jake to Bri’s school musical last night. It was pretty cute. Lizzy and Jake both bought money in the desperate hope that concessions would be available. Both Bri and I told them there would not be, but Jake and Lizzy did not let our knowledgeable pessimism stand in the way of their desire for overpriced candy. There wasn’t any candy for sale but they did have some show tee-shirts. Lizzy decided that she wanted one and spent ten bucks on a tee-shirt that reaches her knees.

Perhaps one of these days I’ll remember to bring her flowers like the other moms. Don’t hold your breath!

Things I've learned from William

William has taught me a lot of things over the past nine years. He taught me that achievements come with consistent work; that seemingly small accomplishments can be amazing. The desire to imitate others, to be with others is so important to our development. And everything is harder if you lack that.

He taught me that some people think if you can’t talk and don’t care to do what others want you to do they think you are retarded. But others can look at you and see ability and potential and that if effort is exerted that progress will be made.

I’ve learned that most people don’t talk to William directly. But there’s something special about the ones that do talk to him -- and there is no telling who that person will be. It could be someone who barely knew him and I would have thought was to successful to be bothered with him because he certainly doesn’t always give a lot back.

Will taught me how extraordinary normal, unimpeded development is. Someone goes from a jumble of cells, to a baby, to a child, to an adult seemingly capable of anything. But I’ve also learned that it’s ok to have small accomplishments: learning to dress yourself, going to the bathroom, setting the table, and reading -- all these things are amazing!

I’ve learned to deal with public humiliation. Things that would have send me scarlet-faced running into my house forever; now, after Autism, I can shrug off with my mantra “That’s the kind of mother I am.” I realize that it could always be worse. And sometimes it’s a lot better.

He taught me not to be timid about approaching people with disabilities.

William has taught me that an extraordinary number of people care about people with disabilities and are eager and willing to work with them although they could be doing something much easier.

I’ve learned to question authority. No, they are not always right. No, they don’t know better. If something damages my child the responsibility to care for the lifetime needs of that child is mine. So, I’ve learned to be a more active participant in your care.

And I’ve learned to be more patient and I hope a better mother.

Thank you.

I love you!

Keeping it Real

When I talked to one of my sisters the other day she told me that she was having a hard time relating to the women in her neighborhood. My sister, who has a wide range of kids, is a little older than many of the other women and she tends to be pretty down to earth. So, I told her she has two options.

1. Start spending an hour a day on hair and makeup.

Or 2. Do what I would do and start lurking by a synagogue to find a Jewish BBF.