Autism Watch: 2007

Posts Tagged ‘vaccines

First, today is World Autism Awareness Day. I wish there was a way to roll the word ‘advocacy’ in there, but a website url can only be so long and be remembered. Bumper stickers only so big. Headlines only hold so many characters. Check it out at: http://www.worldautismawarenessday.org. It isn’t the end-all, be-all for autism, but I’ll take it. If it gets just one more person to learn about autism, that’s a success in my eyes.

So much going on lately. No, no major illnesses, traumas, situations, just a lot of stuff. Just a ton of stuff. I bought a new car; I figured driving an 8-seater SUV we bought when we had all the kids younger with us regularly no longer was necessary now that I’m driving just a couple around. I also hated parking The Tank on regular errands, and my dh either took pity on me or got tired of hearing about it, so he decided the time was now. I got my ‘dream car’ for all intents and purposes and in today’s economy, got one heck of a deal that makes it completely affordable all the way around. (And to fill a tank on $35 — who knew you could do that??) Getting the alarm/bluetooth installed took FOREVER to get resolved, but the dealership was spot-on solid about customer satisfaction, so thumbs up to them despite me having lost almost a week of my life that I’ll never get back.  We also went camping and half of us ended up with the stomach bug. Work got busier, and the cockatiel noisier. (You’ll see why that matters later, I promise. I may be weird but I usually make sense.) And there’s ds.

The last few weeks, something’s been off. He’s had a lot of headaches over the last six weeks, resulting in the need for a panel of blood tests and an MRI. (Or as he keeps calling it, an “MRD.”) He’s been tic’ing a lot, this gulpy breathing tic that bothers me more than it should, way more than it bothers him. His temperament is completely unpredictable; he’ll be great one minute, inordinately angry the next, and crying a few minutes later. Then there’s the lips. And that’s where the problems get worse.

With the headaches/migraines, ds has had a hard time finishing a full day of school without a visit to the nurse. We try to get him to stay the whole day, but if his head hurts, he can’t. Yet, if I keep bringing him home, he’s got too many absences. We’re waiting on our follow-up neuro. appt., but that’s not for two more weeks. There’s no way to get him in there sooner, and even that will require him to miss some school time.

Attendance at school is not as important as we’re led to believe. As a past homeschooler, this I know for sure. I may not know everything about autism, but I know that autistic kids interpret stress and other things they can’t identify in ways we don’t understand. A headache could be anxiety from having to sit still too long while waiting for other kids to finish their work, a problem he tells me about frequently. (He chose to up his RSP time to help with that.) A tummy ache, that could be stress from trying to get along while the buzz of the fluorescents and the breathing of the bumping child next to him distracts him. We all get these things, but as non-autistic people, we find ways to get by. Our kids? Not so much. These are things not easily remedied in a school setting, but if we bring them home, not only are we showing them they can get out of an unpleasant situation and skip learning proper coping skills, but we have the dreaded lengthy list of absences.

So it puts the parent in a difficult situation. Unwinnable. You can’t necessarily make their illness go away while they’re at school, but if you bring them home, where they will feel better, then you have a whole different problem. What to do?

I’m giving my son a pep talk every morning. “Don’t go to the nurse’s office unless you are completely sick and can’t stay.” I don’t want the poor thing struggling through a day with a migrained, but where do you draw the line? How do you know? And how do you improve communication skills so the real problem shows through and isn’t masked in some aching body part?

Lately, he’s complaining about his ‘friends’ at school again. I say the word ‘friends’ lightly, because, in my opinion, friends invite each other to their birthday celebrations. Friends don’t ignore you when you call their name, and I’m not sure if it’s even called ignoring when the kid looks directly at your child and then keeps going. Friends don’t play right in front of you and pretend you aren’t there. I feel sorry for today’s kids in sort of a big picture notentirelymybusiness kind of way. (And if this doesn’t apply to you, disregard.) Kids won’t necessarily have manners, compassion and know how to treat a friend if they’re not taught. This is where parents come in. It’s not the school’s responsibility. (But, I would expect teachers to address it when they’re seeing it.) Parents need to teach their children how to not treat someone else badly just because they’re different. Not to ignore someone who calls their name. To be nice to someone when that person’s not harming them. How is a kid supposed to learn if mom tugs the little girl’s hand away as fast as possible when your child says hello? How is a kid supposed to learn if mom says “stop!” to her own child (and worse, yours) when they are playing nicely, for no other reason than she doesn’t want her perfectly neurotypical child playing with your non-infectious ‘different’ kid.

See, here’s where I differ from a lot of people. I haven’t shared my son’s diagnosis with the classroom and students at large. I don’t feel I should have to, nor do I feel it’s in his best interest. I’ve considered it. (Well, “we,” as in dh and I, but I’m the blogger, so I’m going to talk about me. It really is all about me.) But, the judgmental attitude I experience with some parents wouldn’t magically disappear. Many parents would just change from “you poor kid, you don’t have to subject yourself to playing with the different little boy” to “you poor kid, I won’t force you to play with the kid who can’t control himself.” Yeah, I have a bad attitude…today. Or often? Hard to say, but I am still wondering how my son is supposed to fit in, or learn to fit in, with other kids his age when few give him a chance? We expose him to as many groups of kids his age (and older/younger) as we can, but his differences make him stand out, and few people want to take responsibility for having to deal with it voluntarily. So, he’s been invited to two birthday parties in the whole last year, and two friends have him over. And I know, we are more blessed than many by having those two friends. Thing is, my son’s not that much of a handful. He is a handful, yes, but there are times when he just needs to be a regular little boy. But, I digress. See? So much to say, so little time..and room.

It’s after 1pm my time, and no call from the school yet. He has an awards ceremony in an hour, and I will be there in the front row, or I’ll have to show someone else out of my reserved (ha) seat. He’s getting two awards. I can’t wait to see the smile on his face! People often underestimate the importance of praising a job well-done. They don’t realize that so many autistic kids want to do well, they want to be a part, to be accepted, and to be proud of what they’re doing. They’re proud of it, so they don’t see why others aren’t. My son will float for getting awards. Such power in saying “good job.” Such positive motivation to say “I like the way you xxx” instead of saying “Why did you xxx.” If only we could teach everyone that.

So what did you do for World Autism Awareness Day? There’s still plenty of daylight ahead, so what’s your plans for the rest of the day? My respite nurse has a sick child, so I won’t be using my respite tonight, which scratches out my plans, but on the other hand, I’m going to take my little guy to Borders to buy Jenny McCarthy’s newest book, Healing and Preventing Autism, and we’ll hit up Seattle’s Best while in there. (Grab her book if you can! She and Dr. Jerry Kartzinel did an amazing piece on GMA this week, despite all GMA’s “experts” refuing what they said. The proof is in our kids though.) Then we’ll come home, make some pizza, and snuggle as the clouds and rain rolls in. Works for me!

Wow, has it hit the fan this week! I can’t think of a more politically correct way to say it that wouldn’t make me censor my own blog. Jenny McCarthy’s hitting a nerve, and as we all know, words are like peroxide — you can pour it all over your body, but it will only sting where there’s an open wound. You can call me fatty or smelly or stupid, but it’ll only bother me if I am fat, if I smell, or if I am indeed stupid. So when Jenny is out there saying that we want safer vaccines and people are getting mad, I have to wonder, why?

Safe vaccines. There, I said it. It’s really simple. There’s no ‘anti-‘ in that — there’s simply the word safe. Why is that so hard to understand? Why fight it?

Let’s make up a scenario. We have a baby, we begin injecting it with toxins (such as aluminium over 10x the recommended safe amount for a newborn) in the first few days after birth, and proceed to give it another 30 or so vaccines by the age of two. We don’t do any tests to see if the child’s got a weakened immune system and could get sick from any ingredients in the vaccines, we just figure we’ll prevent our child from measles, mumps, chicken pox, etc. Our doctor says it could happen, so it must be true! Then a couple of years later, we wonder why our child’s losing speech, constantly having rashes or diarrhea, and is banging his head on the floor while pulling out his eyelashes and screaming when you move his line of toys or screeching when you turn on your overhead fluorescent light. Oh, wait, that’s not a scenario, that’s real. Let me do the fake scenario.

So here goes, the futuristic scenario: people open their eyes and realize that even if there really is not 100% guarantee that autism is caused by vaccines, having safer vaccines can’t hurt. Formaldehyde, ether, aluminum, thimerasol, and aborted fetal tissue is removed from the vaccines and, sit down, the VACCINES STILL WORK.  These vaccines continue to decrease the risk their child will get a fever from chicken pox or itchy from the measles, and decrease the risk that polio will return. One thing that may happen is that the insurance companies or the parent may pay more of a co-pay towards the vaccine. Or, here’s the shocker, major pharmaceutical companies, one of the most profitable yet protected (immune, ironically, if you’ll pardon the pun) industries in the world, may make a few dollars less. But the big change? The risks related to these vaccines — the numbers printed on the inserts of vaccines, that every parent should be reading already — will decrease. Less children will be suffering seizures, swelling, infections, dying. Pretty significant, wouldn’t you think?

Those of us who are “Jenny Followers” do so proudly. She’s saying what we’ve wanted to say for years but we just aren’t celebrity enough to get the attention. She’s spent weeks with doctors and renowned scientists learning facts about vaccines, illnesses, autism, diet, nutrition, etc. She’s simply the messenger. (In fact, I’d venture to say that Amanda Peet, the “other” side of the current argumental coin, is just a messenger, too…but she volunteered for the role, whereas Jenny was thrust into it by her son’s autism. Jenny’s lived the life, Amanda’s learning it secondhand. Jenny’s been doing it for a while, Amanda’s brand new. So before I hear another person spout off “why are you listening to Jenny?” I want to know why they’re listening to Amanda Peet? She knows about as much about vaccines as any first time mother of a baby. Big deal.) I don’t care if Jenny was a nude juggler in a Martian circus act and speaks in gibberish. If she can get a point across, great. Pretty narrow-minded to think people are only worth listening to if they’ve got a medical degree.

Even if you don’t feel autism is related to vaccines, I honestly don’t care. I’m already neck-deep in autism and its side-effects, so I don’t expect you to understand. I’ve got friends that can’t even find two minutes to ask me how my son is doing, so I can live with a stranger who has a different opinion. But think about it, really think about it. If vaccines can be made without toxins, and the diseases are still prevented, WHY NOT? We want vaccines — we just want our child or your future child or grandchild or Godchild or friend’s child or niece or nephew to just not be the acceptable collateral damage that there are so many of today.

And essentially, that’s what my son is when you look at numbers and say “my son’s not autistic, and he was vaccinated.” Better me than you, right? Maybe my son has a weak immune system, or maybe he was genetically predisposed to autism in some other way, and maybe vaccines didn’t have anything to do with it, but why take the risk? No studies have ever been done, ever, to test the full load of all the current vaccines on small children. (Why? Who wants their child to be that guinea pig?)

Lastly, if that can be a real word for just now — don’t blame unvaccinated children for your illness. If your vaccine worked, you wouldn’t have any worries. Unvaccinated people are only at risk themselves if the vaccines really work. And truly, measles is a walk in the park compared to severe autism.

Don’t let the point of this latest issue on CNN and everywhere else be lost because you’re choosing between Jenny or Amanda or because you’re hung up on their lack of credentials or scientific proof. We all know formaldehyde, ether, aluminum, and other things aren’t in food or any other thing around your body (or your dog’s) because it’s not safe. So why does it belong in a vaccine? It doesn’t. Safe vaccines with a safe schedule harms NO ONE. That’s the point. Safe vaccines. If you remember nothing else in this fiasco, remember those two words: safe vaccines. That’s all we want.

Lately, in the firestorm of arguments about mercury contributing to vaccine, new vaccines being put on the schedule, states considering making vaccines mandatory, I’m seeing pro-vaccine parents becoming more and more vocal. So many thoughts on that, where to start. I undoubtedly will muddle my words and my thoughts, but here goes.

I often hear pro-vaccine parents saying that the risks of the vaccines are worth it, to protect their children from diseases. But what about that 1 in 150 children who IS the child who has the side-effect? As long as that 1 child in 150 vastly affected by the vaccines is not their own child, the risk is worth it? Does that make my child’s autism acceptable damage? Who is anyone to make that choice for someone else?

If someone wants to vaccinate, why the need to persuade the rest of us to do so? Why not just vaccinate without the need to defend it? We’re not taking your vaccines away. Those who us who don’t want to vaccinate have the number one goal of making vaccines safer and not injecting toxins into our children, not tell pro-vaccine parents what to do. Such a glaring difference between the sides.

I’ve heard the words ‘collateral damage’ a lot lately in regards to the children who are affected by vaccines. When is damaging any child, any human, in the name of saving others acceptable? Shouldn’t we be aiming for no collateral damage, instead of accepting the numbers and being glad it’s someone else’s child? If we know that we can make vaccines without the garbage that’s toxic, why isn’t that a priority? Is your money better spent on Starbucks than paying a few more dollars for a safer version of a vaccine?

Greening our vaccines is a goal that will help all of us. No child/human should be injected with formaldehyde, ether, antifreeze, mercury, or anything else that’s toxic. If a product can’t be in our food, in our makeup, or in pet vaccines, should it be in a vaccine? Greening our vaccines will still give all the pro-vaccine parents the choice to vaccinate. Nothing we ‘green vaccine’ parents wants is going to hurt anyone else, yet the potential for harm if the vaccines aren’t changed is vast and WILL hurt people. It HAS hurt people. It’s CONTINUING to hurt people.

Pro-vaccine parents need to understand that those of us who don’t want to vaccinate with the current vaccines are not anti-vaccine. We are pro-SAFE-vaccine. There is a huge difference between the two. HUGE. We want to continue to eradicate disease; we want to keep people safe and healthy; we want to offer immunity (as much as is possible) from diseases that could maim and kill. We don’t want our children to be collateral damage to that cause. Our children didn’t sign up to be the poster children for vaccines so the collective “we” can say “Yeah, but at least less people have measles this year. Phew, glad my child dodged the autism bullet.”

Everyone needs to realize that any time they give their child a vaccine, they are potentially going to cause their child to be THE one in 150 who will get autism or some other illness. Not all our children are genetically pre-disposed to have that happen, but it’s like playing Russian Roulette. Who knows if their child will be THE one? Is it worth that risk? Those who usually say it is don’t have a child with seizures, or with autism, or with some other illness/injury that has negatively impacted their life, and may never go away. Things change, irreversibly, when your child isn’t potty-trained, bites himself, can’t talk, has to wear headphones to leave the house…the list goes on.

My favorite comment of all: “Unvaccinated children put mine <vaccinated children> at risk.” Hmmm, this one’s so easy, I really don’t get why people still say that anymore. IF vaccines worked, why would an unvaccinated child be of any risk to a vaccinated person? Yeah, I know, I puzzle over that, too.

Pro-vaccine parents often say ‘but there’s no definitive proof it causes autism.’ Newsflash, there is definitive proof that mercury is unhealthy. There is definitive proof that ether, formaldehyde, and antifreeze are unhealthy. The bottom line is, even if these things don’t cause autism on their own, they have no place in vaccines. If mercury is not safe in fish…in mascara…in pet vaccines…it is not safe in a flu shot. The fact remains that the autism rates have risen exponentially, and so have the number of ‘mandatory’ vaccines. It doesn’t take a genius to say that it deserves further consideration. Studies done 10 years ago don’t relate to today, as today’s world, the generation of children born in 1999-2001, the children who got 500x the number of mercury deemed safe for a 300 lb adult, who are newly diagnosed, or not yet diagnosed got a lot more shots than when studies were done. And the list is continuing to grow if agencies have their way.

We want a cleaner environment. We use less-toxic cleaning products in our home, vehicles with less emissions, we recycle and do any number of other things to green our homes and conserve the environment. Our children, born/unborn, diagnosed/undiagnosed, deserve no less. If you shop for anything safer for your home, your car, your life, why not consider greener/safer vaccines? And if not, don’t bash my choice. Just don’t imply my child is acceptable collateral damage. There is no such thing.

I was cruising around the net this morning for news of activities in honor of World Autism Day, and found an article that I was sure had to be an April Fool’s day prank. (In fact, the timing of it still makes me wonder, even though it’s purported to be serious.) If you haven’t yet visited AAP’s site, and proclamation that they have met with DAN! representatives to understand Defeat Autism Now treatments and interventions better, it may just be the best thing you read any time soon. Oh, and they also recognize World Autism Day.

CNN has special broadcasting all day today. I’m watching now and unless Bernanke’s economics speech has something to do with autism, I guess it’s not a marathon of autism segments, but I’m not changing the channel. (And I actually learned something that I probably wouldn’t have cared about much before, until I try to sell my home or fill up my gas tank.) On CNN’s home page, you’ll find a link to Autism: Unraveling the Mystery, quite an inclusive list of videos and news articles about autism and those it effects. It showcases adults with autism, parents of autistic children, doctors, vaccine controversy, Jenny McCarthy..and the list goes on. Even if you don’t have time to read/watch it all today, share the link. Put it in your sig line. It could be the easiest autism advocacy/awareness effort you’ll do.

You can buy autism awareness bracelets at numerous sites in my blog list — TACA, National Autism Association, Generation Rescue, and so forth. Maybe today is the day I should wear my “Autism: It’s no mystery, it’s mercury” t-shirt? (Would that tick off the doctor I have to see this morning to refill my migraine medications? Do I dare risk it? A migraine is pretty painful and puts me out of commission for days……) If nothing else, slap an autism awareness ribbon on your car and be prepared to tell the approaching strangers (who will come, I promise) where you bought it. And oops, leave some of your autism education cards in public places. There’s not a better day to deluge the world that autism is here, it’s not going away, and we all need help.

It’s amazing to me today that the vast numbers of children who are not the same after the vaccines are simply ignored by the CDC and doctors who say there is no credible reason proof that vaccines contribute to autism. WHAT IN THE WORLD IS IT GOING TO TAKE??

I watched Dr. Jerry Kartzinel on TV this morning — I wish I could have a transcript of his explanation about vaccines and just repeat it to anyone who refuses to at least look at stats and educate themselves on the real ingredients in vaccines, or to at least be on board with understanding why other parents want vaccines redone. His words explain it like no other, and makes sense. It makes SENSE.

 We parents know our children. We can tell when they’re one way on one day, and then an entirely different child from a vaccine (or vaccines) and beyond. How is that not proof that there is something going on? Why are we not credible enough to believe? If it was just a few of us, that’d be one thing, but we’re talking thousands upon thousands upon thousands. Numbers like that can’t be ignored…yet we are.

One child out of 150 children — 1 out of 94 boys — is on the autism spectrum. Something is causing that. There’s no such thing as a genetic epidemic, and these are kids that for the most part, were developing normally (maybe with some eccentricities) until a certain age. With these numbers, it IS an epidemic. If these kids were dying, something would be done. The public outcry would be horrible. But because they’re simply dealing with communication, behavioral, sensory and social issues, it’s not worth it. (I say that with much, much sarcasm.)

I don’t need something else to get upset about. It’s been a rough day already — but how can I not? What’s it going to take? How can these doctors stand up there on tv or say anywhere publicly that vaccines are safe, all kids should get them all, and we need to do them to prevent mass illnesses..that’s saying that my son, and any other child out there with autism, is an acceptable casualty. Who is willing for their child to be the acceptable casualty?

I’m not, and I will join the thousands upon thousands upon thousands of other parents who know that our children being fine before a vaccine, but never the same after, is not okay. It’s not a coincidence. Stats this high aren’t coincidence. It’s not paranoia. It’s not trying to blame something. It’s fact — toxins are not good for our children, and there are toxins in vaccines. Fact is also that vaccines can be made safely, and given on a better schedule. Why wouldn’t everyone be okay with that? Oh, yeah, money. It’s all about the dollar…and we’ll just leave us parents to foot the bill for their vaccine-damaged children.

I almost can’t watch the news on it anymore. Few newscasts are unbiased, and there’s always one doctor who has to refute it….yet there is no definitive proof that it doesn’t contribute to autism either. You don’t hear that on the news, do you?

I was surprised. There you have it. The premiere of “Eli Stone” almost two weeks ago surprised me. I didn’t expect it to be good. I didn’t expect it to turn out the way it did. I moreso didn’t expect to have yet another show on Season Pass for my DVR to record weekly. (Who has time?)

So, way to go, ABC, for not bowing down to the AAP, CDC and whomever else asked you to cancel the show. Thank you for realizing that viewers have their own brains, can think for themselves, and can tell fiction from non enough to not be influenced so easily. However, <insert sarcasm here> way to go, ABC, for directing people with questions about autism to the CDC. CDC?? (I should use big font there. BIG.) As in “what were you thinking?” Center for Disease Control? So autism is a disease? If yes, why hasn’t the CDC found the cure for this disease? Oh, that’s right. Head in the sand. What was I thinking?

Disorder. Syndrome. Fine. But disease? No. So the CDC isn’t the place to refer people for information on autism. So many better places to mention. So many.

Almost two weeks ago, as I shared here already, we started our son on Risperdal. We are 11 days into it (12?) and I wish I could say I’ve seen a difference. His highs are still high, his lows are abysmal, and he’s still got a mean left uppercut…and right jab. Ask his siblings. Ask me. And his mouth? Ask anyone, I’m sure the neighbors all hear it. This morning, he cycled into this horrible sobbing period of depression that it took a while to get him out of. I succeeded, but I’m just waiting for the other shoe to fall. Or to be thrown, more accurately. With a low comes a high, and vice versa. Highs sometimes mean manic running from one end of the house to another, non-stop talking, screaming, laughing hysterically, standing and listing all the reasons he loves me…but lows mean he wants to tell me the depth of his anger, how much he hates us, how he hates himself, and how stupid he is. There are days I just hug him, because I know he doesn’t want to be this way, and other times I want to but can’t because he’s so mad that I can’t get near him. Six months ago, I’d not have been able to understand how draining this type of cycling is. I figured I’d seen the worst of his autism, that he was only going to get better with more treatment. Now all I know is that I don’t know enough, and each day brings something different.

Another update: ds’s ankles are still wobbly, and if we can get him to wear them, we have an orthotics prescription. They won’t ‘fix’ his ankles, per se, but they may make his legs hurt less when he walks a lot. Now we just have to see if we can get him to wear them. I’m not even sure insurance will pick up the cost, and last I knew, they were pushing $300. $300 for something for him to throw at someone at school? I don’t know.

On a similar note, has anyone encountered questions from the school in regards to your child’s behavior that they feel are caused by meds? If yes, I’d love to hear from you. (Hasn’t happened to me yet, but I do have a reason for asking, I promise.)

Back to work. Not much time to be on the computer outside of work hours the last couple of weeks, ds’s meltdowns have been severe and exhausting. Right now, it’s one day at a time. We go someplace if he’s doing good, and we stay home if he’s not. We split up our errands when possible so one of us is home with him, rather than taking him with us. Everything takes such planning, and while we qualify for respite, finding an agency who has an LVN available for part-time hours has been impossible. Tack on my 13 yod, who has seizure disorder and just had another 10 days ago, and every day is something different. I used to laugh at the “God never gives us more than we can handle” phrase because I don’t believe it was intended to be interpreted as it often is. In reality, God doesn’t give us more than we can handle, because we find a way to handle whatever it is. (I mean, really, what’s the option?) He will just always be there with us, throughout all of that, and with God, we can handle all things. Those without faith, I don’t know, it’s what gets me through because I know there’s a reason for all this. I know there’s a reason that we have two kids with extraordinary needs. What it is, I may never know, but I’m hanging onto the “faith faith a faith-a”…and was glad to see that reflected in “Eli Stone,” even if it came via “Everyone want a Dr. Chen” character, who just had a way of breaking it down so right.

So, way to go ABC, I’ll be watching Eli again this week … though I hope that Eli’s future visions have singers other than George Michael. 😉 

U.S. Appoints Autism Advocates to New Federal Panel  From Reuters

Dare we hope it’ll help? I’m thrilled by some of the names on the committee list though — Lyn Redwood (Coalition for Safe Minds) and Lee Grossman (Autism Society of America) are excellent choices. The mention of vaccines causing autism is a good sign, but it’s almost scary to get encouraged by the thought of that being mentioned in the same article as the CDC (Centers for Disease Control).

State Delivers Reprieve on Autism Aid  Times Reporter, Ohio

Like it should have ever been stopped in the first place? There’s too many disabled people, so they get penalized? NO words. There are no words that I can say here.

UN Designates April 2 as World Autism Awareness Day Pravda Online

Interesting.


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