Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

4/29/08

Too Many Masters of Illusions...

Photobucket"The greatest obstacle to discovery is not ignorance -- it is the illusion of knowledge." ~ Daniel Boorstin

Thanks to the misrepresentation of facts and out of control spinning by many out there, most have not a clue about Hannah Poling's disease, its origins, and its significance. I have tried to explain it, to the best of my knowledge, having read multiple studies, having friends whose children have mitochondrial disease, and even having gone through the process of mito evaluation for my child, with Dr. Shoffner. Many bloggers have written on this, some have also written articles for various new organizations. The authors include other parents, both fathers and mothers ,(one of those moms also happens to have her PhD.), along with neurologists, scientists, and other physicians.

Despite that, people are opting to look past the facts and embrace half-truths and all-out lies. They prefer the sensationalist value of conspiracy theories and blaming the government for "injuring" our children. There are far too many masters of illusions weaving webs and indoctrinating parents into their beliefs, all for their own fame and fortune. To say that it's now been proven that vaccines cause autism (or mitochondrial disease), is beyond ignorant. Who cares if I don't have a clue about what disease Hannah Poling has? What difference does it make if she was born with this condition? I still blame the government!

The realization that Hannah Poling has a disease, one that was not caused by vaccines, and one that doesn't change anything for your own child or court case might be very upsetting to you. I get it. You were exhilarated by the Poling case (especially by those that hyped it to no end), feeling you too would be awarded money for your child's autism. Then you come to find out that Hannah, is in fact, not like your child--how disappointing for your case. I understand that. I realize it may feel better to hang onto something you have believed for so long--even when there is no solid proof or evidence to support those views. To think in new terms, acknowledge that all you had come to believe was all wrong, can be very difficult. But please, I urge you, look at the facts. Look at what the real science shows and proves, with regard to Hannah's condition. See what the real scientists, not a journalist, a lawyer, or other spin "doctors" are saying.

READ THIS, from Scientific American author Nikhil Swaminathan on what Dr. John Shoffner (a mitochondrial disease expert) has to say:

He notes that the route from the vaccine to the child's autism was by no means direct. Hannah's mitochondria were already underperforming, so when she developed a fever from her vaccine, the increased energy requirements likely pushed them past their thresholds. A fever caused by an ear infection or the flu would likely have triggered the autism symptoms if they occurred before or between the ages of 24 and 36 months, he says, which is when classic, regressive autism, which affects one third of sufferers, usually appears.

Shoffner notes that parents and advocates looking to impugn vaccines as triggers for autism—or mitochondrial disease—need direct, not just circumstantial, evidence.
"If you were sitting in a waiting room full of people and one person suddenly fell ill or died or something," he says, "would you arrest the person sitting right next to them?"

Jon Poling, says Shoffner, has been "muddying the waters" with some of his comments. "There is no precedent for that type of thinking and no data for that type of thinking," Shoffner says.

So, now you know what a mito expert has to say. Not just any mito expert, but THE one who was involved in a study with Dr. Poling, and MOST significantly, the ONE who diagnosed Hannah Poling with mitochondrial disease. Now what say you?


Illusion
Pronunciation:
\i-ˈlü-zhən\
Function:
noun
Etymology:
Middle English, from Anglo-French, from Late Latin illusion-, illusio, from Latin, action of mocking, from illudere to mock at, from in- + ludere to play, mock

1 aobsolete : the action of deceiving b (1): the state or fact of being intellectually deceived or misled
a (1): a misleading image presented to the vision (2): something that deceives or misleads intellectually b (1): perception of something objectively existing in such a way as to cause misinterpretation of its actual nature

synonyms see delusion



This is an illusion:

Photobucket

This is not:

Photobucket

In the first picture the dots don't really exist, they are all an illusion. In the second, the dots are really there, a fact that is easily proven. Illusions are all around us. They are fun and novel, when they come in forms of art and imagery. However, they are dangerous when they stem from issues of medicine and science.


4/28/08

Questions for David Kirby

PhotobucketI read this quote on Left Brain Right Brain, it is from David Kirby's blog on the Huffington Post. I have a few questions for Mr. Kirby. Here is the quote:

"But I have personally identified at least a dozen (and there are reports of many more) children with cases in the court who meet the exact same medical criteria as Hannah, and whose cases will almost surely be compensated as well—each time with the attendant media fanfare."

I'm curious, how did he go about "personally identifying" these "dozen" children? Can Mr. Kirby offer any documentation of these children? Are parents whose court cases are pending in vaccine court consulting with him? Exactly what criteria is Mr. Kirby using, and what records does he have access to in order to "identify" these children?

Lastly, and most interesting to me, are the children that "meet the exact same medical criteria as Hannah." I am assuming these children have had muscle biopsies and diagnoses of mitochondrial disease, exactly like Hannah. Otherwise, they could not be categorized as having the "exact same medical criteria" as Hannah. So, I would be curious to know--have these children undergone mitochondrial and genetic testing? What were those results? How did Mr. Kirby gain access to those medical records?

Is It Fever? Mercury? Thimerosal?

PhotobucketPick a cause, any cause. The growing list of possible causes of autism continues to grow. It could be mercury, thimerosal, ultrasound, french fries, the television, excessive hygiene, and we can't forget "refrigerator moms." Now, is fever the new cause du jour of autism?

An idea being tossed around by people commenting on this piece, is now that it's the "vaccine-induced" fever that is affecting these children with "mitochondrial dysfunction." Is this becoming an idea that is adopted by Mr. Kirby and others?

Are we to blame fever now for autism (ala mitochondrial dysfunction)? How shall we go about "greening" fever or banning it? One can easily predict that even if we "green our vaccines," fever would still be a common side-effect. Likewise, splitting up vaccines does not lessen the chance of fever post-immunization. The fever is due to our immune system's response to the microorganisms in the vaccine. So, is this idea of the "vaccine-induced" fever just another stepping stone to banning vaccines altogether?

Is it fever or is it mercury or is it thimerosal or is it vaccines altogether that are to blame? I wait with bated breath for the next autism "cause" that will be "uncovered."

More Mito Docs Speak...

PhotobucketFinally. More mito docs are coming out of the woodwork (please read Mitochondra and vaccines - the science), and speaking out about the Poling case (even those directly involved in it). And, let me back that up by saying these physicians are highly-respected, very intelligent, experts in their fields. They spend their days and nights caring for patients with mitochondrial disease or evaluating people for possible mito abnormalities, performing studies, reading other physician's reports, and researching, researching, researching. These doctors eat, sleep, and breathe mito.

Why any parent would prefer to try and gain understanding of the complexities of mitochondrial disease (something which is a difficult task for most pediatricians and other docs to do even) from a P.R. guy, or a lawyer, or anyone other than the mito experts is beyond me. If your child has a broken bone, would you take medical advice from your stock broker? Now, your stock broker is probably very intelligent, nicely groomed, and well-spoken, but again, wouldn't you rather ask his opinion on the markets than medicine? So, why are so many parents listening to David Kirby and others like it's the gospel?

Make an appointment with Dr. John Shoffner, or Dr. Salvatore DiMauro, or Bruce Cohen, to name a couple. Let them explain the ins and outs of mitochondrial disease. Ask them if vaccines cause it. Ask them what they think of the outcries from those on the anti-vax side. Then, and only then, can real discussion on this topic begin. When you have THE experts on mitochondrial disease, saying that vaccines didn't cause mitochondrial defects in Hannah Poling, what is there to question?

I suppose the anti-vax brigade will claim that "well, they are doctors on the CDC's payroll" or some such nonsense. Take your head out of your asinine conspiracy theory for just a moment. If the running idea is that all these docs are corrupt, out to make a buck, and covert agents for the government--wouldn't they be the ones saying, "yes, kids with autism probably all have mito disease, come get tested by me."

Talk about rolling in the dough. To get a good and thorough evaluation of mitochondrial diseases and other genetic abnormalities, you are easily looking at $20,000 - 40,000. That is PER patient. If every child involved in the omnibus gets such thorough evaluations, these doctors will be millionaires in no time. So, why would these doctors state that vaccines don't cause mitochondrial disease, and therefore, vaccines do not cause the autism (or autistic features) that can sometimes occur along with mitochondrial disease?

They aren't doling out shots in their clinics, so they're not getting paid by Big-Bad-Pharma to be spokespeople for the vaccines. Why would they "cover up" a link between mito and vaccines? For no reason, that's why. There is no link. These physicians have high ethical standards, and if it was found that vaccines indeed caused mitochondrial disease, they would be the first to say it. They are striving to find a cure for mitochondrial disease. There is no reason for them to deny a possible cause to a disease they are fighting to get rid of.



**Hats off to Kristina & Kevin for their coverage on this ever-developing story!

4/27/08

Doctors & Scents

PhotobucketI brought my youngest to the doctor the other day. Her regular physician was not available, so we met with a nurse practitioner. Most everyone at the pediatrician's office knows my daughter, and more importantly, how to make her feel comfortable. This NP, just our luck, was new and one we'd never met. The NP was really sweet, I think she must have gotten a primer on how to approach my daughter by the nurse (I'm not kidding!). I have to say, my little one did great, despite having never met her.

What wasn't so great, was the overpowering smell of the NP's perfume. It was very strong. I will never understand why someone in the field of medicine would wear any scent, or at least not a very strong one. I'm not sick, and it made me feel like I needed to cough.

Now, I will admit, I may be a bit biased to begin with. I have never really enjoyed heavy scents. When I do wear perfume, it is a very light scent. I myself do not wear any perfume or scented lotion if we are headed to a doctor's office.I do this generally because I consider those with asthma and other breathing difficulties, allergies, colds, nausea, etc. who are more than likely sitting in the waiting room. Another reason, is because I consider those who may be extra-sensitive to such smells, like my child.

My daughter is very much affected by smell (a super smeller and taster here!). She will gag in the grocery store, pick up on odors I never even catch, and refuses to sit by us if we are eating certain foods (plain lettuce for one, believe it or not). So, in our home, we've all taken note of that and try our best not to insult her delicate olfactory system. And also, to not be insulted ourselves should she gag or scrunch up her nose at us or our food.

I realize I can't create some bubble around her to prevent her from smelling odors. There's far too many people, food varieties, buses, and so on in this world! I do hope that one day she is able to tolerate at least some of the day to day smells--like various foods. But, it would be nice if those in the medical profession would take into account their patients' needs (and not just my sensory-sensitive kiddo, the patients with the ailments I listed above too). One would think, that those who work in hospitals and doctor's offices, would take that into consideration.

That's just my two scents...

4/25/08

NASCAR & Autism Speaks: Maybe Some Potential Here

PhotobucketNASCAR Race to Benefit Student Clubs for Autism Speaks:

DOVER, DEL. (April 2, 2008) – Dover International Speedway and Best Buy officials announced today that the June 1, 2008 NASCAR Sprint Cup Series race will be named the “Best Buy 400 benefiting Student Clubs for Autism Speaks.” A variety of initiatives are planned for Dover's May 30 – June 1, 2008 NASCAR race weekend to increase awareness and raise funds for Autism Speaks. Last year's June NASCAR Sprint Cup event in Dover, also benefiting Autism Speaks, saw Martin Truex Jr. pull into Victory Lane for his first career win at the Monster Mile.

Student Clubs for Autism Speaks (SCAS) helps further the mission of Autism Speaks by creating the opportunity for students to engage and actively participate in positively affecting the lives of people with autism. Through education, awareness, friendship and fundraising, SCAS includes students at the middle school, high school and college level.
I had not heard about these clubs prior to this headline. There is plenty of information about Student Clubs for Autism Speaks (SCAS) on their website. There are a few issues I take with this program. The fact that "to fund global biomedical research into the causes, prevention, treatments and cure for autism" is part of their purpose statement, aggravates me. I've made it clear in the past where I feel this research looking into "prevention" and "cures" will end up.

Another issue, this club is essentially a mini Autism Speaks, one that's primary focus (again) isn't the inclusion and acceptance of fellow (autistic) students, but rather raising money. For example:
(a) Fundraising: All Clubs must field a walk team in their local Walk for Autism Research. Those outside of a Walk region should go to the Autism Speaks website for assistance. Other fundraising activities may be undertaken at the discretion of each Club.
What I do like is this part of the purpose statement:
...to promote an environment of acceptance for students with autism;
This should be the first and most predominate statement for such a club. Why can't we simply have a club that promotes awareness and acceptance, along with inclusion? A club that's members would welcome autistic kids, and truly become 'aware' of autism. Such a group could also be helpful for siblings of autistics. From their perspective, they could help educate the members, and it could also be empowering for them--knowing they were helping to pave the way for social acceptance of their brother or sister.

The messages that our children and teens are hearing with regard to autism will alter how they view autistics in their adult life. If your view on autism and autistics is negative, that you hate it, that it should be wiped out, you are teaching your children that when they come in contact with an autistic person they should stay away. When that same child is an adult, they won't hire an adult autistic, they won't vote for measures for support services for autistic individuals. The opposite is also true, thankfully. If you raise your child, teaching them compassion and acceptance of others, then they will reach out and say hello to their autistic peer. They will understand what autism is, and not run from it or from autistics. This child, when they are an adult, will gladly hire an autistic person, and see that services are available to those on the spectrum.

I'll have to see how these clubs evolve and change over the next few months and years, before I make my final opinion on them. From what I can tell, there are not many of these clubs nationwide--yet. It would be great if in time, the main goals for these clubs are to promote friendship and understanding between students, both on and off the spectrum. Only time will tell which direction this club, and Autism Speaks as a whole, will take (a shift and change in priorities is possible). There is some potential here.

4/24/08

What Is Going On In Virginia???

PhotobucketThanks to Ian Shapira of the Washington Post for giving this national attention. The Virginia Board of Education is trying to change their special education laws, giving even less power to the parents. I know many of us have struggled at I.E.P. meetings, not always seeing eye to eye with the school district. For some, it's an even bigger battle--one where the school refuses a physician's diagnosis, denies services, or worse still, employs use of restraints, and the list goes on. It's become common practice for families to hire advocates, and all too often parents end up in court to fight for their child's right to an education. From the Washington Post article:

A proposed revision of Virginia's special education rules is triggering widespread protests among parents of disabled students, who say it would strip them of power in negotiating their children's education.

Currently, school systems must obtain parental consent before eliminating such services as speech or occupational health therapy. But the state Department of Education is proposing that schools be allowed to suspend them without such consent. If a parent objects, the service would be maintained until the matter is settled through dispute resolution.


So now Virginia wants to make it even more difficult for us parents to have a say in the matter (of our own child's education!). These new "rules" would mean that the school can take away services without parental consent. As you take away the rights of parents, this opens a can of worms. If you don't need to have a meeting or discussion with the parents to discontinue speech therapy--who's to say the school will claim they don't need the parents' consent to use restraints? Honestly, who thought this change was a good idea? The last thing the state or school districts need are more say when it comes to our children's IEPs.

The parents in this town are protesting this new proposal. I don't blame them at all, and I certainly support them. Hopefully their voices will be heard (yours can be heard here). If you live in the area, the article lists information on public hearings:

The department, which has received 3,000 comments on the proposal, has scheduled public hearings across the state, including one from 6:30 to 9:30 p.m. May 15 at Freedom High School in Loudoun County and another from 6:30 to 9:30 p.m. June 2 at Oakton High School in Fairfax County.
The good news, for the parents in Virginia, is that their governor has answered their calls, and has many concerns with this plan:

I have reviewed the proposed regulation on a preliminary basis. ... I would like to express some concerns that I have – concerns that parents across the Commonwealth have shared with me. Virginia has long been a leader in the area of parental consent and involvement in the special education process. I have concerns about proposals in this regulation that reduce parental involvement in key decisions made about their children. These include, but are not limited to:
1. Elimination of parental consent prior to partial or complete termination of or changes to special education and related services.
2. Elimination of parental consent before providing special education services for transfer students.
3. Removal of parents from the Functional Behavioral Assessment team.
4. Addition of an option for the Local Education Agency to refuse a parent’s request for an Individualized Education Plan meeting if the LEA considers the request unreasonable.
5. Reduction in the number of regular progress reports given to parents on their child’s Individualized Education plan.
I do not currently see any circumstance under which I would approve a final regulation reducing parental involvement in these ways. I urge the Board of Education to take this and other public comments into account regarding these provisions and to act accordingly prior to submitting a final regulation for my approval.

Hopefully, the governor keeps his word, and this will be a proposal that goes nowhere. It's likely that in the end, the only harm will be wasted time, paperwork, and money. We can't forget the unnecessary raising of stress levels for the parents involved. All this, thanks to the Virginia Dept. of Education's ridiculous attempt at being more efficient. Right.

4/23/08

An Action Plan Worth Noting (& Learning From)...

PhotobucketPerhaps this is something we (mainly our government) in the U.S. could learn from. I hope it is successful, and other countries will follow Wales' lead. From BBC News:


A strategy to help people affected by autism in Wales is set to be launched, with the Welsh Assembly Government claiming it to be a world first.

The action plan aims to improve services in health, social services and education - and expand into areas of housing, leisure and general society.

The assembly government has pledged £1.8m for the programme's first year.


Improvement in health and social services, education, and areas of housing, leisure, and general society. Isn't that a great place to put money?

4/22/08

Earth Day 2008

PhotobucketI'm tired, so I don't have anything real insightful to post on this. Just a funny story:

In a gift shop today, my eldest alerts me, "Do not buy things that are made from animals!" I smiled at the statement, as it was only one of several declarations she made to me, on how I could be more green (most of which, I replied with "We already do that, sweetie."). I asked her why. She said "because it's from animals." I pressed her further, to see if she was just repeating what she had heard, or if she understood it it. I should know better by now. She then goes on to explain how animals suffer from it. Side note: to which I then add "well, that's partly why I don't eat meat." to which she adds, "WELL, no, that's not it, we NEED meat for that [to eat]!!!"

So, we continue walking through the gift shop. She looks down and says "THIS is animal," pointing to the rug (made from some type of animal skin). I told her "yes, it is." I distracted her by showing some of the decorations. We land on yet another animal skin rug (this store had at least 5 of them, and they appeared to be real--go figure, being there on Earth Day!). Now, she is getting angered. "Why would anyone make a rug from an animal? Don't they know they shouldn't do that????" I spoke in a low tone, assured her they probably do and maybe they were just recycling these? I also told her while it's good she has learned that lesson, perhaps this store wasn't the best place to preach on it.

She has a t-shirt declaring "Future President" and I have no doubt she will go very far. I've seen her advocate for her younger sister, debate adults on issues from politics to Barbies, and she always stands strong on her beliefs. This began very young, a few months shy of her 4th birthday, my husband and I took her to vote with us. While in line, she began chanting & singing songs about her favorite candidate. We promptly and gently gave her a lesson on campaigning at voting stations. My husband and I laughed at the thought of us getting kicked out because our preschooler was taunting other voters!

I will add--because I feel obligated to... My husband & I do all we can to be "green." We recycle, conserve water and electricity, use reusable grocery bags, buy organic and local, and so on. All of which, after today, my eldest is breathing a sigh of relief over. :)

Autism and Politics

Much has been written about the current presidential candidates and their positions on autism. Clinton has made several speeches in the last couple of years, Obama's website has several statements about autism, and McCain made a now infamous remark about a connection between vaccines and autism. And now, autism has even entered into a victory speech by Hillary Clinton this evening.

"We will tackle everything from autism to Alzheimer’s, cancer to diabetes, and make a real difference."
On her website, you can find Clinton's plan for autism. And here is what she said on World Autism Day. The most significant, from my perspective, was this:
I’ll also provide funding to school districts and universities to train teachers and other health and social services professionals in how to work most effectively with autistic children, since the number of children with autism in our public schools has skyrocketed in recent years. I’ll make sure every young person has a transition plan before they leave high school. I will also ensure that both children and adults with autism have access to the services they need - including housing, transportation, employment - to live rich and full lives. In all, I will commit $500 million annually to provide services to improve the quality of life for all people living with autism.
To be fair, here is Barack Obama's statement on autism:
Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.
Here is John McCain's statement on autism:
John McCain is very concerned about the rising incidence of autism among America's children and has continually supported research into its causes and treatment. He has heard countless stories about families' hardships obtaining a diagnosis for their children's autism and accessing quality medical treatment. He believes that federal research efforts should support broad approaches to understanding the factors that may play a role in the incidence of autism, including factors in our environment, for both prevention and treatment purposes.

John McCain was proud to lend his support to the Combating Autism Act of 2006, which he cosponsored, and worked to ensure its enactment. This law is helping to increase public awareness and screening of autism spectrum disorder, promote the use of evidence-based interventions, and create autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. John McCain understands that despite the federal and scientific research efforts to date, the exact causes of autism are not yet known and greater research is needed to understand this disorder. That is why in November 2007, he joined with Senator Lieberman in requesting the leadership of the Senate Health, Education, Labor and Pensions Committee, which has jurisdiction over federal research into autism, to hold a hearing on federal research efforts regarding factors affecting incidence and treatment in order to help determine where research efforts can best be directed. As President, John McCain will work to advance federal research into autism, promote early screening, and identify better treatment options, while providing support for children with autism so that they may reach their full potential.
I am wanting to stay away from a political debate on this blog, but I will say I do have objections to what's been said with regard to autism by some of the candidates. I am also weary that any of them will actually do much to help autistic adults or teens. There are far too many special-interest groups in Washington, that ultimately will persuade them. I have no doubt that Autism Speaks and others will sink their teeth into whomever is elected President. The funding will go toward those lobbyists who are most convincing (which translates into those finding cause, genetic testing, etc.).

Perhaps I am cynical, but my overriding theory on politicians is that, regardless of their best intentions, get into D.C. and all those promises they made to earn your vote slip away. To be honest, I won't choose who I am voting for based (at least not solely) on their stance on autism. Part of it is because I feel so much of what they say and promise is mostly rhetoric, the other part is I feel there are other issues at hand that take precedence over autism--when it comes to picking the next President.

I wish nothing more than to be pleasantly surprised. I do sincerely hope that whomever moves into the Whitehouse in several months is truly aware of autism, and the greater needs that exist today (adult programs, on top of that list).

4/21/08

ADHD Meds & Your Child's Heart

Press Release: Children with ADHD should get heart tests before treatment with stimulant drugs

Statement highlights:
• The side effects of stimulant drugs, like those used to treat ADHD are usually insignificant, but are important to monitor for children with ADHD and certain heart conditions.
• Children diagnosed with ADHD should receive an electrocardiogram (ECG) to rule out heart abnormalities before beginning treatment with stimulant drugs.
• Children currently taking stimulant drugs who did not have an ECG prior to treatment should get an ECG.

Read the American Heart Association's entire press release here. The parts that I found particularly important:

DALLAS, April 21 – Children with attention deficit hyperactivity disorder (ADHD) should get careful cardiac evaluation and monitoring – including an electrocardiogram (ECG) – before starting treatment with stimulant drugs, a new American Heart Association statement recommends.


If heart problems are suspected after the evaluation, children should be referred to a pediatric cardiologist. Once stimulant treatment begins, children should have their heart health monitored periodically, with a blood pressure check within one to three months, then again at routine follow-ups every six to 12 months.


In 2003, an estimated 2.5 million children took medication for ADHD. Surveys indicate that ADHD affects an estimated 4 percent to 12 percent of all school-aged children in the United States, and it appears more common in children with heart conditions. Studies report that, depending on the specific cardiac condition, 33 percent to 42 percent of pediatric cardiac patients have ADHD, Vetter said. The number of undiagnosed children with heart conditions is unknown as routine heart screening is not performed, but Vetter said that a recent pilot study she presented at the American Heart Association’s 2007 Scientific Session indicated that up to 2 percent of healthy school aged children had potentially serious undiagnosed cardiac conditions identified by an ECG.


Data from the FDA showed that between 1999 and 2004, 19 children taking ADHD medications died suddenly and 26 children experienced cardiovascular events such as strokes, cardiac arrests and heart palpitations. Since February 2007, the FDA has required all manufacturers of drug products approved for ADHD treatment to develop Medication Guidelines to alert patients to possible cardiovascular risks.

***Bold for emphasis, by S.L.

Subpoena: QUASHED!

PhotobucketMy congratulations to Kathleen Seidel. Here are the details of the "Endorsed Order granting Motion to Quash Subpoena."

4/20/08

Edible Awareness???

Pretzels?? Photobucket
PhotobucketPhotobucket
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Autism Awareness????

Has anyone seen these yet? Better yet, has anyone eaten one? Now I'm a big fan of pretzels, but I don't think I could bring myself to eat these. From the Bachman Company website:

Our 100 calorie packs are all natural, low in fat and cholesterol free. Solve your snacking puzzle with this good for you delicious pretzel. The Bachman Company has been and continues to be a proud sponsor and active supporter of Autism Speaks we are donating 5% of our proceeds from the purchase of this product to Autism Speaks.
Interesting to note, is that Bachman lists their gluten-free products, and guess what? These puzzle-piece pretzels apparently are not gluten-free. Is that ironic or what? Kind of like when Rice Krispies was involved in an "Autism Awareness" campaign.

The puzzle pins (which, it seems everyone from actors to coaches wants to wear), ribbons, magnets, even toothpaste (another irony, since the toothpaste was apparently not gluten-free either, and also contained fluoride, yet another supposed--and unproven, cause of autism), and jewelry were one thing. But edible puzzle-piece pretzels? Seriously? Exactly what kind of "awareness" will come from this?

I can only imagine what will be next...

4/18/08

Again, It's NOT The Vaccines

PhotobucketKev at Left Brain/Right Brain writes about Pertussis (a very real, very lethal disease). If you visit here, click to listen to what whooping cough sounds like. I'm still scratching my head over those who claim a possibly fatal disease like pertussis, or say measles, is preferable to autism. On Tuesday, a 9 month old baby boy died from pertussis. Here are the risks and complications of this disease:

Pertussis can be a serious illness, particularly for babies and young children. More than 50% of babies with reported cases of pertussis must be hospitalized. Coughing can be so severe that it is hard for babies to eat, drink or breathe.
  • Babies may bleed behind the eyes and in the brain from coughing.
  • The most common complication is bacterial pneumonia. About 1 child in 10 with pertussis also gets pneumonia, and about 1 in every 50 will have convulsions.
  • Brain damage occurs in 1 out of every 250 children who get pertussis.
  • Pertussis causes about 10-20 deaths each year in the United States
I suggest you re-read those numbers. More than 50% of those infected will be hospitalized, 1 out of every 250 will have brain damage, and 10-20 will die from pertussis. The anti-vax brigade will declare that not that many babies die from pertussis. So, it's no big deal, right? I mean, what's a handful of infants dying anyway? In the year 2000, 17 infants died from pertussis. I can't imagine reading the two case studies--how the babies suffered, and not feeling pain for their families. In Oregon alone, from 2000 to March 2008, 5 babies died of pertussis. Those who claim those fatalities are nothing significant, I suggest they speak to the families of those babies. Perhaps they should ask them if it was a big deal or not.

From Medical News Today:
"While pertussis cases in all age groups have been rising, it is important to know how the disease is spread, particularly to infants who are too young to be vaccinated themselves, so that steps can be taken to prevent infections in these vulnerable infants and potentially save lives," said Annelies Van Rie, M.D., assistant professor of epidemiology in the UNC School of Public Health. "It is troubling to learn that infants are often infected with pertussis by their own family members, who are often unaware of having pertussis themselves."

Herd immunity is important to us all. You will read claims that the concept of "herd immunity" is all a sham. People will explain that since there are states with lower percentages of vaccinated populations, and there is no widespread outbreak of disease, that herd immunity is not legit. What they fail to realize is that with each parent who opts to not get their child vaccinated, those percentages dip further and further. We are on the brink of a tipping point. It's no wonder just in the last year, we've seen outbreaks of measles in Milwaukee (just this past week, reports are ongoing), San Diego, Pima County, Arizona, elsewhere, and pertussis in Mississippi, South Carolina, Colorado, Pennsylvania, Wisconsin, and Ohio. This is only a sneak peek of what will come, should the numbers of children not getting vaccinated continue to rise.

If you're unsure what the diseases that can be prevented by vaccines look like, have a look:





**I commend actress Keri Russell for doing her part to get the word out on pertussis.

The Absurdity Continues...

PhotobucketAnother ridiculous "subpoena" (in quotes, because they are not the subpoenas most of us would think of, these are an abuse of the legal system) has been handed down. Kathleen Seidel from Neurodiversity.com writes today about a Dr. Marie McCormick. She too has received a subpoena courtesy of Clifford Shoemaker. The only question I have, is when will this utter absurdity will end?

From the neurodiversity weblog:


Yesterday I learned that on March 26, 2008 — the same afternoon that I was greeted at my doorstep with a demand for access to virtually the entire documentary record of my intellectual and financial life over the past four years — Dr. Marie McCormick, Sumner and Esther Feldberg Professor of Maternal and Child Health at the Harvard School of Public Health, and Professor of Pediatrics at Harvard Medical School, was subjected to a similar experience at her Massachusetts home.


Kathleen titles her piece "In Distinguished Company." I couldn't agree more. I want Dr. McCormick to know that there are many of us standing behind her, just as we do Kathleen Seidel.

FDA, Prozac, & Children with Autism

PhotobucketThe FDA has granted "Fast Track" designation for a new orally disintegrating tablet of fluoxetine (Prozac), for use in children with autism.


4/10/08: PRESS RELEASE


Neuropharm Group plc (AIM: NPH), a speciality pharmaceutical company focused on neurodevelopmental disorders, is pleased to announce that the US Food and Drug Administration (FDA) has granted Fast Track designation for Neuropharm’s program to develop NPL-2008 in the treatment of Autism Disorder.

NPL-2008, a new orally disintegrating tablet of low-dose fluoxetine, is currently in Phase III development for the treatment of the core symptom of repetitive behaviours in patients five years of age or older with Autistic Disorder.

On its website, www.fda.gov, FDA states: “Because fast track products are intended to treat serious or life-threatening conditions and must demonstrate the potential to address unmet medical needs for such conditions, an NDA for a product in a fast track development program ordinarily will be eligible for priority review and FDA may consider for review, portions of a marketing application before the complete NDA is submitted. Fast Track is intended to facilitate development and expedite review of drugs to treat serious and life-threatening conditions so that an approved product can reach the market expeditiously.”

The NPL-2008 program received Orphan Drug Designation from FDA in 1999, giving the product the potential for seven years of market exclusivity on receipt of regulatory approval. In addition the FDA Office of Orphan Drug funded a clinical study in children and adolescents at Mount Sinai School of Medicine in New York followed by a second study in adults.

Neuropharm’s current Phase lll study (SOFIA) underwent Special Protocol Assessment by FDA in 2007. The study is currently ongoing at 17 sites in the US in collaboration with Autism Speaks, the US advocacy organization, and its Clinical Trials Network of expert investigators. The results from this randomised, double-blind trial in more than 120 child and adolescent patients with Autistic Disorder will form part of the NPL-2008 New Drug Application, which is targeted for submission to FDA in Q4 2008.

Robert Mansfield, Neuropharm’s CEO, commented: “We are delighted to announce that FDA has granted Fast Track designation for our program. The point was made earlier this month on World Autism Awareness Day that more children will be diagnosed with autism this year than with diabetes, cancer and AIDS combined. Fast Track designation emphasises the importance we believe should be accorded to this condition.”

This trial will be the first under Autism Speaks' Clinical Trials Network (CTN):

SOFIA is the first industry-sponsored trial for Autism Speaks' Clinical Trials Network (CTN), and will include over 120 children and adolescents with autism enrolled across the U.S. at participating CTN sites. The study is evaluating the efficacy of Neuropharm's new melt-in-the-mouth formulation for the treatment of repetitive behaviors in autism. This study will be a crucial part of an application to receive an autism indication for this formulation of fluoxetine.

I have no doubt that for those parents whose children are presently taking Prozac or who are currently considering it, such a trial will be a relief. With the majority of medications, trials are typically done on adults. The effects of the drugs on those under 18 are often unknown (and, especially unknown when it comes to individuals with autism). Bad reactions in the pediatric community only come to light once a serious side-effect has occurred.

Prozac was approved for pediatric use in 2003 and is generally well-tolerated. A trial focused on a pediatric autistic population (for both efficacy and side-effects) will benefit many. A dissolving tablet will be much easier for children to tolerate, as well.



4/17/08

Mito-Autism Study

PhotobucketOkay, I'm a couple of days late on this, but seeing as I've written quite a bit on mito, figured I must add it to the list. I've included the parts which I feel have been overlooked by many who have jumped on this study, declaring that MANY autistic children MUST have mito.

Again, the whole fuzzy math thing--read each word and realize when the statistic of 74% and 78% are concluded, that is among 41 children who were SUSPECTED of having mitochondrial disease. These were not just a random sampling of autistic children. These were children who more than likely had other health issues, along with abnormal lab results (which led them to Shoffner and these further studies).


Mitochondrial Dysfunction May Play a Role in Autism Spectrum Disorders Etiology

The statistics many are reading and running with:

Here at the American Academy of Neurology 60th Annual Meeting, a retrospective analysis of 41 children with ASD who were being evaluated for suspected mitochondrial disease showed that 32 (78%) had defects in skeletal muscle oxidative phosphorylation (OXPHOS) enzyme function and 29 of 39 (74%) harbored abnormalities in the OXPHOS proteins.

Again, I can't state it enough: this is NOT a random sample of autistic individuals. These are children who were already suspected of having a mitochondrial disorder.


More:

"Obviously, autism is not a single condition but a true spectrum of disorders. There are many ways in which the genes can go awry, and our hope is that this study will open the door to a greater understanding of at least 1 subset of this patient population with metabolic and enzymologist changes," he said.
I'm curious to see if Dr. Shoffner feels that such changes in genes comes from the parents, or via vaccines, environmental toxins, etc. as Dr. Poling & Kirby promote. His point of autism being "a true spectrum of disorders," and that this is only "1 subset" of patients, would lead one to believe he is not ruling out genetic factors (ala Jenny, who seems to feel there are zero genetic causes for autism). So, again, for the anti-vax group, this is not a definitive finding in their favor. Not by a long shot.

However, he added, further research in unselected populations of autistic patients is needed to confirm these findings.

Exactly.

Lisa Jo Rudy makes some great points on the significance, if any, of this study.

More Autism Awareness (a film, a study, and a press release)

PhotobucketI came across these 3 interesting pieces the other day (none of which have anything to do with robots). One is about a new film premiering tonight, the second is about a new study, and the third highlights the 'other' autism awareness (you know, the one that actually tries to help autistic individuals and their families, not the "vaccine awareness" or "Autism is the worst thing that can happen to a family" or other campaigns touted as 'autism awareness' these days).




"Autism Yesterday"

The film "Autism Yesterday" (yes, obviously a shot at Autism Speaks' "Autism Everyday") will premiere tonight at The Holland Center in Minnesota. It is a Generation Rescue documentary, which "explores an emerging truth many parents are discovering: autism is a reversible condition..." The film features five families, chronicling "heart-wrenching stories of despair, hope, and recovery." You can watch the trailer here, and decide for yourself. You can read the complete article on www.bio-medicine.org.



Autism Diagnosis 15-20 Years Ago...

More support, it appears, for the theory that autism cases are not necessarily on the rise over the last 15-20 years, but rather physicians are better trained to diagnose, more services are available to identify those children, and that how the diagnosis protocol has changed. Professor Dorothy Bishop, a fellow at the University of Oxford, has completed a study worth looking into. It suggests that children in the 1980's and 1990's who were diagnosed with severe language disorders would be diagnosed as autistic today.

"We can't say that genuine cases of autism are not on the increase as the numbers in our study are very small," she says. "However, this is the only study to date where direct evidence has been found of people who would have had a different diagnosis today than they were given fifteen or twenty years ago."

You can find the article and more information on the study here.




Awareness on World Autism Day from Easter Seals.

Regrettably, I missed this on World Autism Day. It is the only press release by any major organization highlighting the need for adult services. Easter Seals has their own autism website, on there is a section entitled, "Stories of Hope." It's nice to see a charity showing adult autistics being successful and also thriving families who support their children.

In the event you missed it too, here are some snippets from their press release (full release is linked in the title above):

“World Autism Awareness Day provides us with an opportunity to help raise awareness about autism services and treatments available to families today and the need for the United States to share what it knows about effective interventions with other countries around the globe,” says James E. Williams, Jr., president and chief executive officer, Easter Seals. “There are a number of wonderful organizations researching and seeking a cause and cure for autism. Easter Seals is unique as the nation’s leading provider of services and support for children and adults living with autism.

Critical Need for Services
Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps.

“There is an urgent need for increased funding and services -- especially for adults with autism,” adds Williams. “We want to help change all of this and make a difference for families living with autism today.”

Finally. Thank you.

Autism Is Treatable
While autism is a baffling, lifelong disability, it is treatable.

“People living with autism -- at any age -- are capable of making significant progress through personalized interventions and therapy; and, can and do lead meaningful lives,” says Patricia Wright, director, autism services, Easter Seals.

Treatable doesn't always mean injections, chelation, and HBOT sessions. I think they are utilizing this term, simply because that is what people want to hear (treat my child, fix them) and it is more marketable (look who they are up against for raising money, Autism Speaks, TACA, etc.). I like the point Patricia Wright makes, about how at any age, autistic individuals can make progress. So many parents see their child as an hourglass, with time running out to help them. You wouldn't believe how panicked parents are when their child is a toddler or preschooler ("if he doesn't do X by 5 years, he'll never do it," or "I'm afraid I missed all this important time, since T didn't get a diagnosis until she was 4" and so on). It's a great point, and also that Ms. Wright adds "and, can and do lead meaningful lives." Bravo.

Easter Seals + Autism
More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working nationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating in Washington DC to encourage Congress to finance research to improve services and supports for people with autism.

I can easily support an organization wanting Congress to finance research that will improve services and supports for people with autism (especially adults). I realize I won't agree 100% with all their campaigns or messages, but their overlying theme is that of support for autistic individuals, with a focus, most importantly, on adult autistics. What other major organization even mentions "adults" and "autism" in the same sentence? Some spokespeople for these major groups aren't even aware that adult autistics exist. So, I'll find it hard to not support Easter Seals, even if I can't stand behind 100% of their projects or partnerships. The greater good that hopefully will come from Easter Seals' campaign will benefit ALL autistics. One of the bills Easter Seals is working to pass, is the Expanding the Promise for Individuals with Autism Act of 2007.

4/15/08

More Inspiration (from Joshua Eisenstat's family)

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Thank you, to Joshua Eisenstat's mom, Selma, and his Uncle Doug for replying to my blog. I appreciate you sharing more about Joshua.

I had written on April 2 in a post entitled "The Best From Today," about Selma Eisenstat and her message on CNN about her son Joshua. In response to that post, I received two replies that further touched me. Selma herself, along with Joshua's Uncle Doug left messages. I wanted to share them with everyone, so they wouldn't be missed.

Thank you so much for honoring my Joshua on your blog. I happened to run across it today, and was overwhelmed. Joshua lives on in my heart and memory every day; and to have his influence live on the lives of others means more than I can say. I have hundreds of stories and memories that bring peace and joy to my heart. I loved my son with all of my heart, and every day I am thankful that I am Joshua's Mom. Thank you for making my day today.

Selma

And...
I'm Joshua's Uncle Doug. I was privileged to live with Joshua three different times during my life so we were very close and his death was very hard on me and our whole family. Every time I see another person that has special needs, I smile. Yes, I know its hard, but I too also know the joy. I remember one time that Joshua was having a really bad seizure and he kicked his Dad during the seizure and once he was out of it, he hugged him and said sorry.

He had that pure love as they all do. I agree with Selma, the road is hard, but it is so worth it.

Uncle Doug

I was so moved by each of their replies, and of course with the piece from CNN. I transcribed the piece for a fellow blogger who requested it (see original post, in messages section), as an amateur, so my apologies if I got something wrong. The last paragraph, Selma's powerful advice to others, is beautiful. This is something I wish every parent of an autistic child could see:

"When I hear the child being diagnosed with autism or being born with disabilities, I don't ever know if they would understand if I said, 'do you know how lucky you are?' I know it's gonna be a hard road, I know that, um, you're gonna have sleepless nights and you're gonna have many tears, 'cause I've had many tears. But, um, you get, I feel like you get a slice of heaven and a pure love in your home. You learn service and you learn, you just work together. Once you stop seeing what my child can't do, and you start seeing what they can do, it's a beautiful...I wish you could have met him, just cause I could feel your love for him."
Please visit the Joshua Eisenstat blog, for video, pictures, and more thoughts on Joshua's life. It's quite plain to see how very loved Joshua was, and how deeply those who knew him, miss him.

4/10/08

Moved & Inspired

PhotobucketI watched the ABC special last night on Randy Pausch, a truly amazing human being. I typically don't watch these types of programs, but this one sparked my interest. I am so glad I watched it. To be honest, I don't think I've ever been so inspired by someone on television. I've spoken before on how the different challenges my daughter has faced, has given me tremendous perspective on our daily life, and on autism. Dr. Pausch has a perspective and a view on life, that is very rare (although, he says he's "not unique"). I was so moved by this program, by his lecture, and on this family's life.

I think for anyone dealing with any challenges in life (and that would be the majority of people in this world, I suspect), this is crucial to read or see. A lecture like this, these words of wisdom, really challenges you to look at your life in ways you may not have before. I know that raising an autistic child or a child with disabilities, is not easy. There are sleepless nights, doctors' and therapy appointments, meltdowns, etc. When you hear a man who is dying of pancreatic cancer, telling you he is happy and to not pity him, it really makes you think. I speak of "choosing" to focus on the positive, with my daughter and autism. For Dr. Pausch, that would translate into my being a Tigger versus an Eeyore. I love that!

For more information on pancreatic cancer, please visit the Lustgarten Foundation for Pancreatic Cancer Research. They are giving away 5,000 copies of "The Last Lecture" from 4/9 - 4/11 (as supplies last).

Here is the "Last Lecture," if you missed it:



We've been painting our home the last couple of weeks. After our master bedroom, it's time for the girls' rooms to be painted. We have been talking to them about choosing a color (for the older, it's between a light blue or lavender, for the youngest, it's yellow or red). I had planned on painting a mural or some fun designs on the wall. But, after being so moved last night, I think we will let the girls paint the pictures on their walls, if they want. I promise, Dr. Pausch (and I will post pictures here when they're done).

"If you lead your life the right way, the Karma will take care of itself, the dreams will come to you. And anybody who is out there who's a parent - if your kids want to paint the bedroom - as a favor to me, let them do it. It will be OK. Don't worry about the resale value of the house."


Thank you, to Dr. Pausch and his beautiful family for sharing their life, their story, and his lecture with the world.

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4/9/08

MAE: Giggles at the Grocery Store

So, I really, really, really wanted to write a cute, light post here today. Lucky for me, my daughter presented me with just that today.

We hit the local farmer's market (she does much better here--less crowded, more open space, no loudspeakers, etc.), she was in a great mood. Ya can't ask for more than that! At one point, halfway through our shopping excursion, I brushed some hair off my cheek and felt something odd on my earlobe. I touched it, and then suddenly realized I had those fake stick-on earrings on both my ears! Earlier in the day, my daughter had come up to me and stuck them on my ears. It was such a cute gesture, I left them there...and completely forgot I had them on! I can only imagine what the other shoppers thought (who, by that point, I had come in contact with more than a handful!). One was a light pink heart, the other an orange star--and both were prismatic, and very shiny.
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I laughed so hard in the aisle after realizing this. My daughter got upset as I took them off, so I assured her I loved them and would put them on later (thankfully, she forgot!). This tops the day she put Cinderella stickers on each of my nails. The look the drive-thru cashier gave me was priceless when she spotted my 'manicure.'

I can only wonder what the next Mommy Makeover will be...

Giving Credit Where Credit Is Due...

PhotobucketI can't believe I'd ever be applauding an act by either of these two gentlemen, but alas, here I am. David Kirby and Dan Olmsted don't agree with Kathleen Seidel's subpoena, and apparently have even urged Mr. Shoemaker to drop it. The two clearly support Ms. Seidel's First Amendment Rights, and I applaud them for coming forward and speaking out. You can read their entire reply on Respectful Insolence, following Orac's Open Letter to David Kirby and Dan Olmsted.

Left Brain/Right Brain and Natural Variation have posts on this as well.

Can We Agree On This: Your Child Does NOT Have Autism?

So, I've been milling over this for a few weeks now. I realize some of my friends may disagree with me on it. I wonder if we are able to get past this hurdle, that perhaps those who are working for adult services can move forward, with real change?

Can we agree that perhaps, there are forms of autism--or perhaps something completely else (not autism, but rather vaccine encephalopathy or something like that?), that are either caused by or worsened by vaccines? Perhaps there are a very small number of children who have something going on with their mitochondria or their immune system, and it makes them susceptible to autistic-like features post-vaccine (or illness, allergen exposure, etc.). For those whose doctors can prove their child is such a case, step aside. I am not for the rebranding of autism ala Kirby, but for cases like these, I say call what your child has something other than autism.

Step aside, stand on a soapbox with a name other than autism. I realize you parents are passionate about your children, and about how you feel your child "became" autistic. But, what you may not realize, is that all the time you are in the media, writing, and visiting message boards spreading stories of so-called recovery and cures for autism, you are taking away from our message. Those of us who have either tried biomed treatments and had no success, those of us who have been tested for and found a proven genetic link, and those of us who feel strongly our child was born autistic--we are fighting for rights and services for our children when they become adults and for the many adult autistics living in the world today.

Every time someone goes on television or writes an article, telling the world that autism is reversible, or that an autistic child can be recovered, you are telling the world that there is no need for adult programs. If the message is that autism can be "cured," then why would anyone want to support or create services for adult autistics? if we can make a distinction between what your child has (not autism) and what my child has (autism), we can all move along further toward our (very different) goals.

Ethically, I have many disagreements with how autistics are often referred to by those who are adamant about recovery. I am saddened that so many parents have great difficulty seeing the gifts that their children are, and I also fear that such beliefs can pull some over the edge. But, for the sake of my child's future and for the benefit of adult autistics, I would be willing to overlook this for now. Allow us to make real change for our children--those who won't recover, and who will need some type of support throughout their adult years.

I am so tired of trying to fight the massive media attacks on vaccines, the profiles of those who have "successfully recovered" their children, and all the viciousness I feel from those who disagree with me. I want to blog and discuss all areas related to autism. However, lately it is those who are attempting to rebrand autism and find blame that are consuming the autism world. I'd love to move past this. Changing the diagnosis is the only way I can think of to make progress.



This is what I wrote when I was feeling much more stressed (& and frustrated, among other emotions) the other day:

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TO THOSE WHO FEEL THEIR CHILD'S "AUTISM" WAS CAUSED BY MERCURY, VACCINES, ENVIRONMENTAL TRIGGERS, AND SO ON:
CAN YOU START CALLING YOUR CHILD'S CONDITION MITO DYSFUNCTION OR VACCINE INJURY OR SOMETHING OTHER THAN AUTISM? THEN YOU CAN PACK YOUR BAGS AND LEAVE THE ISLAND. MY CHILD HAS AUTISM, NOT FROM VACCINES OR ANY OTHER ENVIRONMENTAL FACTOR. PERHAPS ONE DAY, IT WILL BE PROVEN THAT SOME CHILDREN HAVE AUTISTIC-LIKE FEATURES OR SYMPTOMS BECAUSE OF ALLERGIES OR SOMETHING ELSE. FINE. GET YOUR DAN TREATMENT AND 'HEAL' YOUR CHILD. BUT, DO NOT SPEAK FOR ME OR MY CHILD. DO NOT POUR MILLIONS OF DOLLARS INTO THIS VACCINE FAR-FETCHED THEORY. YOU ARE NOT HELPING US. YOU ARE NOT DOING ANYTHING FOR MY CHILD. WHEN MY CHILD BECOMES AN ADULT, YOU WILL HAVE DONE NOTHING TO HELP HER. YOU WILL NOT HAVE CREATED ANY NEW PROGRAMS OR SERVICES FOR ADULT AUTISTICS. MY CHILD WAS NOT HIT BY A BUS, SHE WAS NEVER MOWED OVER. SHE WAS BORN WITH AUTISM. SHE IS DOING WONDERFUL, AND I LOVE HER MORE THAN WORDS COULD EXPRESS. I NEED ASSURANCE THAT THE FUTURE WILL BE A HOPEFUL ONE. I WANT OPTIONS FOR HER, AND I WANT SOCIETY TO RESPECT HER AND SEE HOW TRULY AMAZING SHE IS. YOU DO NOT SPEAK FOR ME, I AM NOT PART OF THE SO-CALLED AUTISM COMMUNITY YOU CLAIM TO BE REPRESENTING. GO FIGHT YOUR FIGHT, BUT DO NOT CLAIM IT AS MY BATTLE TOO.

4/7/08

I Am Also Kathleen



I haven't had the proper amount of time needed to truly digest the subpoena of Kathleen Seidel at Neurodiversity.com. Many others have written incredibly about it, and I have linked to them below. What I have been able to conclude about the subpoena, is that some people enjoy wasting paper, and worse, wasting the time of free citizens as well as judges. I have the utmost respect for what our founding fathers fought for--our freedoms, and I hold them dearly. I detest frivolous lawsuits, and I can now add ridiculous subpoenas (Kathleen is NOT being sued) in addition to that. Aside from seeking to silence and intimidate Kathleen (along with the long list of Autism Hubbers mentioned in paragraph #5), this subpoena also attempts to threaten her freedom of religion.

This subpoena is so far-fetched and has utter disregard to an American citizen's rights (freedom of speech, freedom of religion, to name two!), and is truly a fishing expedition, that at first glance one would assume it was a joke. Sadly, it is not a joke. Kathleen is having to take time out of her life, time better spent with family, friends, a hobby--whatever she chooses. She is forced to respond to the subpoena, and then wait to see what comes of it. There is a possibility she could incur major expenses as a result of this subpoena. This is very real, and the requests that Mr. Shoemaker makes are very absurd. I often felt that at least some on the DAN! side of things had a touch of conspiracy theorist in them. One needs only glance at a biomed message board to pick up on that. Lately, it becomes more obvious that the vast majority of them do, and it's not just a touch. So many appear to be full-fledged conspiracy theorists, having zero trust in any government agency or pharmaceutical company. They freely (without subpoenas) author blogs, books, and articles in newspapers and magazines. They are seen on various talk shows to speak on this distrust, promote their beliefs, speak out against vaccines, and increasingly appear in mainstream media's news coverage.

Somehow, they've connected the dots, and decided that we on the Autism Hub are all covert agents of the government, pharmaceutical companies, et al. They so hate that we are speaking out, that our children are thriving, and that we are finding joy in our life (autism and all!). They don't understand us parents, our autistic children, or the many autistic adults who are blogging. I imagine it is mostly fear over the dollars they are not getting from parents like me who have never been to a DAN! doctor. When we speak out, they may fear, perhaps others will follow suit, and that means dollars lost to the biomed industry. I can't think of any other reason for the complete paranoia they have over the Autism Hub, other than money. Especially when you consider that none of us have had the press (see above) that David Kirby, Jenny McCarthy, the Polings, and others have had. The one thing I keep wondering about is this: if they really are making such progress, in proving that the CDC is pure evil and vaccines are giving all our kids autism, then why the need for a subpoena like this? If "the tide is turning," then why are they all still so indignant, irrational, and suspicious?

Here's some wonderful writings I came across.

I took the "I Am Kathleen" from Stranger Than You Can Imagine. I think it's brilliant.

Orac has An open letter David Kirby and Dan Olmsted about the Kathleen Seidel subpoena, which I too would like to see Kirby & Olmsted's response. But, I won't hold my breath...

The Voyage has it ALL covered, nearly all the blogs that are talking about this are listed here.

4/6/08

What Is Autism Awareness?

I wonder this, seeing as we are now about a week into "Autism Awareness Month," and a couple of days following "World Autism Day." How will such awareness affect my child, and other autistic children and adults throughout the world? Will new support services, better educational and vocational programs, beneficial extracurricular activities or anything else of real benefit come to this population of individuals? Will a day of special programming on CNN, fund-raisers at Toys R Us, etc. truly educate the public and make others "aware" of autism (and more importantly of autistic adults and their needs)? Will other parents be more understanding when my child has a meltdown in the grocery store? Will children be more likely to engage with their autistic peer? Will anyone gain anything from all this supposed awareness?

AutismVox has a wonderful post entitled, "Vaccine Awareness from David Kirby," in which Dr. Kristina Chew ends with this:


If we’re going to be “aware” of autism, it’s not vaccines that should be focused on, but on autistic children and autistic adults themselves and their needs, and how we can best teach, help, and understand them.


I couldn't agree more.

In Kirby's piece, he speaks out against the CDC, as well as pediatricians in general. Blaming your physician for giving your child vaccines is like blaming the McDonald's cashier for your being overweight. You have the right to educate yourself on the fat content in a Big Mac, just as you have the free right to investigate vaccines. You can easily opt to not go to the drive-thru, just as you have the right to discuss your concerns over vaccines with your physician. You have the right to opt for your own "vaccine schedule." If your child's doctor disagrees, or will not support your preference, simply switch doctors. I've had to switch doctors once for my daughter. Her first G.I. doctor was just not clicking with us, I felt like he wasn't hearing us out and preferred a lot of invasive testing over more obvious issues. So, we switched, and found a fabulous stomach doc for my daughter. It was my right.

Our pediatrician is nothing like those that Kirby says have emailed him, irate over having to take more time to discuss vaccines with their parents. I remember very clearly, my daughter's 18 month well-visit. At that point, my daughter had been diagnosed as "developmentally delayed" for a year, she had been in therapy for nearly that long as well. By 18 months, she had several diagnoses, both neurological and physical, as well as the description of "autistic features." I had read tons of information on autism by that point.

Once the exam was done, we had our questions and concerns discussion with our doctor. Then, came shot time. My physician presented me with a choice, "Do you want to go ahead and have her receive the MMR shot today? I'm going to give you a choice, given all that is going on. I feel she should receive it, but it is up to you." I told her I had read about shots, autism, etc. and felt that for my child, receiving measles would be a real risk. Maybe I am a rare case, and just lucky to have a fabulous doctor. There's a reason why we drive nearly 40 minutes for her. The bottom line is that we do have the option of picking new doctors, of driving distances to find people we trust to care for our children.

There are plenty of physicians who do not bully their patients' parents into getting vaccines. And, ultimately, it is our responsibility as a parent to do what we feel is best for our children. And, how we come to that position, of what we feel is right for our kids, should come from factual, scientific evidence. We shouldn't be basing our decision on vaccinating our children on a journalist's or actor's point of view.

4/2/08

A Measles Primer For Jenny

"Give my son the measles. I'll take that way over autism any day."

"In a heartbeat," she adds later on.


Perhaps Jenny hasn't used her Google PhD to look up measles yet. Maybe she could ask her own pediatrician, Dr. Jay Gordon. On his own website, you'll find this:

Measles still causes a million deaths worldwide even though a very effective measles vaccination program in the United States has just given us our third year in a row with fewer than 100 cases of measles in our country.
Has Jenny ever read about measles in developing countries? This blog, Nigeria Health Watch, discusses another outbreak there in December 2007. The author asks, "How many children will have to die from measles in Nigeria?" After reading that entry, Jenny may want to visit KidsHealth where she can read this information:
A child who is diagnosed with measles should be closely monitor for fever and other symptoms to detect any complications. In some cases, measles can lead to other health problems, such as croup, and infections like bronchitis, bronchiolitis, pneumonia, conjunctivitis (pinkeye), myocarditis, and encephalitis. Measles also can make the body more susceptible to ear infections or other health problems caused by bacteria.
My child is prone to croup and bronchitis, she has been hospitalized for RSV, and for a bacterial infection called pseudomonas (which she caught during a hospitalization for surgery). I can't imagine ever saying I'd prefer measles, or pseudomonas, to autism.

Further information on measles, and the importance of vaccines, Jenny may want to visit the World Health Organization (WHO). WHO offers some startling facts:
  • Measles remains a leading cause of death among young children, despite the availability of a safe and effective vaccine for the past 40 years.
  • In 2006, it was estimated that there were 242 000 measles deaths globally: this translates to about 663 deaths every day or 27 deaths every hour.
  • Vaccination has had a major impact on measles deaths. Overall, global measles mortality decreased by 68% between 2000 and 2006. The largest gains occurred in Africa where measles cases and deaths fell by 91%.
Some people need images, to let it all sink in. Here is what a "measles eye" looks like. And there's these pictures too:
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I hope many will come forward and speak out against Ms. McCarthy, and this outrageous statement she made. I also wish Jenny would study up on measles, and realize how ridiculous she is to ask her son be given measles, any day, over autism. It is ignorant, and even offensive (to those who have suffered and died from measles, to the 27 mothers who every hour lose their child to this disease, and to autistics who are here, alive on this earth).

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