Autism Watch: 2007

Archive for February 2008

My favorite? Government Concedes Vaccine-Autism Case in Federal Court-Now What? (Huffington Post)

Already, people who don’t believe that thimerasol could be even one cause of autism are denying the credibility, but does that even matter at this point? The word is out. Others are reading and learning, wondering and researching. The truth that there is a relation is slowly making its way out, and it’s too late to stop it now.

Autism is caused by a toxin; put a toxin in a young body that’s genetically predisposed to being affected by it, and autism is one thing that could happen. Why is that so hard to understand? Add in that thimerasol is sub-form of mercury, a toxin, and it was in vaccines up through the early 2000s, and that should make it even easier to understand. It’s also in flu shots. Still. The same flu shots that doctors suggest all children, elderly and many pregnant women get. Even if it doesn’t cause autism, why is it in anything that can be put in a human body, particularly when it’s no longer in dog vaccinations or mascara, and we’re told to not eat too much fish because it has mercury in it?

And this one is just scary: CBS5 Investigates: Woman Promises Autism Cure  Do doctors ever promise a cure? Are they ever supposed to? Mighty expensive cure, and if there’s a real ‘cure,’ why doesn’t the rest of the world know it? Why isn’t it available to everyone, at a price people can afford?

Autism’s Origins: Mother’s Antibody Production May Affect Fetal Brain: Interesting theory, and I like how it mentions if a child was pre-disposed, as well as this just being another trigger or cause, not THE reason for autism.  (Science Daily)

Lots of stuff going on in the world of autism. I wish I could translate that into some immediate help though, too — I’ve got a little guy who wets himself numerous times daily. Finding what causes autism is only part of the problem.

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Seen this article yet? US Autism Group Demands That CBS Apologize for Remark by Contestant on Big Brother

Wow, sign my son up for autism foundation services that contestant works for…NOT. Someone ought to find out the name of his supposed employer and state it publicly. Maybe affect his personal bottom line to make clear the point that he’s the one that is..well…I can’t find a name nice enough to call him right now even here on the internet.

IMO, maybe steady viewers of “Big Brother” are the real disturbed ones. (Yep, I said it, but if something like that is overlooked, where can someone stand when the next comment’s about a group that might include them? Is it suddenly worth doing something about then?) Why watch a show that allows its contestants to make comments like that in the name of ratings? Is there really any justification for that? Is TV really that bad anymore that this is what’s left to watch? Thank God the strike is over…but I doubt that’ll change anything, we as a society in general seem to hesitate to put our money where our mouth is when we might have to <gasp> be inconvenienced or miss something we like. Not watching the show or buying from its advertisers might make a point but I doubt it’ll happen from enough people to make a difference.

According to the article, violent/racist comments are not allowed — but picking on the disabled is? Pretty sad.

EDITED TO ADD: The foundation for which the contestant used to work is speaking up, and is very clear that they are not associated with the contestant and apparently weren’t even associated any longer when he went on the show. At least we know he’s not working with autistic kids now! 

Are We Poisoning Our Kids?

No words are necessary to explain this  — the ad does it all. (Vaccine, mercury, autism…those are probably the words I’d use if I had to.)

 Thanks, Generation Rescue. Awesome ad. Awesome.

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. 😉 

So much to blog about, so little time.

The last week has been a rollercoaster — up, down, up, down, with a curve thrown in here and there. We’re five weeks casein and dairy-free, with no visible difference. We’re not giving up, but it sure isn’t encouraging. Maybe my son is in the percentage of non-responders, or maybe it takes longer than five weeks? He’s never been a big dairy person, so I’m betting that he’s a non-responder. I still stand behind the GFCF diet — I know too many people whom it has helped — but I do believe that no matter what is said, it does not visibly help everyone. Internally? Who knows. Ds is still having potty accidents, still isn’t ‘regular,’ and we honestly see zero change, but it wouldn’t stop me from recommending to others that they try it, as they may just find their child does improve.

On to the next thing. We made the difficult decision recently to try our son on Risperdal. If you read my blog regularly, you’ve seen my son’s tantrums and meltdowns are worse. The mood swings are horrific, along with the self-injurious behavior, and I’m tired of being hit, bit, kicked, and having ds’s sibs having to tolerate it as well. And hearing him yell to all of us how he hates us, hates himself, wants to hurt himself, wants to die, isn’t liked by anyone, etc…I really pray this medication helps ds get some control over himself. I know he can’t want to be this way. On one hand, it’s heartbreaking to have to make this decision, but when you get to the point where you need to try it, for your child, I think you’ll know it. You need to make that decision for yourself, not for anyone else. I’ve run into my share of ‘you don’t need to medicate your child’ people. That’s fine, they don’t have to medicate their child, they’re right. But I get to make that choice for my own son, and I’d prefer this medication over what he’s doing to himself otherwise, and if this helps him be happy, who has the audacity to say it’s not worth it? Educate yourself on the side-effects and be ready for what may happen as best possible, but in the end, make the decision based on your own family alone.

Until we see some change with this medication, we won’t be dragging ds to any birthday parties. I also won’t be taking him shopping or to other loud, crowded places. It really is that bad. So far, we see more compliance and less anger, so we are continuing to pray this medication holds the key to future improvement, along with continued behavioral and social skills help. Picking your child up from school, and listening to him sob quietly the whole way home…no child should have to feel that way. No parent should have to worry if their child is going to make it through a school day without feeling the entire class hates him, that they are all teasing him, or that everyone’s laughing at him, tattling on him, or trying to kick him away from their lunch table. True or imagined, is it really any better? Something needs to change.

Where will I take my son next week? Disneyland. Yep, Disney, even though it’s loud and crowded. The sensory input from the rides seems to overshadow the downsides, at least for a while, so we’re going to head down again, and as always, get the special assistance pass. SO well worth it. If your child is disabled, autistic or otherwise, Disney is wonderful in dealing with special needs children, so don’t hesitate to ask at Guest Services for the help you and your child(ren) need. Without that help, our annual passes would shrivel up in a drawer somewhere, a lot of wasted money, but instead, those passes are now fun, family-oriented Occupational Therapy.

This week, ds has an orthopedist appointment. We want to see if he still has fat feet or pronated ankles or rotating knees and hip. The whole ‘my legs hurt’ issue is one we definitely want to clear up before he’s growing more, and this appointment should help us determine whether or not there are any real problems or if this is just another part of autism spectrum disorder, as one doctor has told us…but we’re not quite ready to just leave it at that if there’s something we can do to help him feel better.

Back to work now — and go vote!


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