Autism Watch: 2007

Archive for April 2008

Autism & Medical Breakthroughs 2008 (TACA — Talk About Curing Autism Now)

I wish I could go — this one looks great, with Dr. Jerry Kartzinel and Dr. Rossignol both presenting. Affordable and not too far away from me, in Long Beach, California. Any event with either of these speakers is well worth the money and the time.

I recently took my son to a birthday party. (Yay! He was invited to a party!) Parties are hit-and-miss, with far more miss than hit. We’ve gotten to the point where we really have to put a lot of thought into whether or not he’s going to attend a party, and I think he probably doesn’t get invited to most of those from his class. Sadly enough, he also doesn’t get invited to a lot from our church family either. I’ll spare you my thoughts on that. Parties require a lot of prep time, a lot of us reminding him it could be loud, he could get bumped in a bouncer, or he may not get to sit next to the birthday child during cake time. By the time it comes around, he’s telling me “Okay, okay, okay, Mom, I got it.” However, talk is cheap.

This party was by a dear friend of ours, and she knows our son very well. She also truly cares about him, and we know he’s in good hands there, among the best. But, you can only control so much. The unknown element is the other guests, and it rarely fails that some other guest will feel the need to speak up and attempt to discipline him…usually when I’m right there. (“Oh, he’s your son?” said even though I’m the only other parent standing there, and I happen to be talking to him…and that’s just one example.) This party was no exception. We weren’t there five minutes before someone tried to tell him how to play with another boy, even though both boys were doing it.  (That’s a Party Whoa!) I swoop in, gently tell them I’ve got it, it’s much better if I handle it or it could get worse, etc., and swoop back out. Problem solved, right? I don’t know, but I do know that I’ve learned that I’d much rather risk offending someone than risk my child blowing up and ruining the event for himself or anyone else, by making a fit, throwing something, screaming, etc…and the more I think about it, shouldn’t the person giving out unsolicited discipline to my child be more worried that they offended me? Why should I have to worry that I’m offending someone when I’m just trying to parent and protect my own child, who I know better than anyone else? One of those mysteries.

Anyway, I don’t know if they were offended or not…yep, back to that, because I hate to offend/upset others, and I feel bad even if it’s deserved…I think there are times people mean well, and truly want to help, but what they don’t know is that ds is really bothered by anyone other than immediate family/friends/teachers trying to guide him, and he will melt down to the point of wanting to leave and never wanting to return to that party or any other party. A bad situation can ruin not only that night, but ds equates the bad with all gatherings of the same nature (a Party Woe), and one problem can set back all that he’s learned, causing months and months of regression. I’d much rather deal with something he does that’s truly a problem (and not just a misperception of someone else’s) and keep the event happy, where it can be a learning experience for my son. Those are oh so important, you can’t understand how important unless you’re really the one dealing with it.

But, to the point, what do YOU do when this happens to you? How do you politely get others to understand that they need to leave the parenting of your child to you? Do these other parents do it because they think your child’s just a problem child, or because of that lovely “If he was MY child, he wouldn’t have autism” phenomenon? Or is it a bigger picture — do we as a society need to start minding our own business more, and stop impressing our viewpoints on others?

Throughout the years, my son’s stims have run the gamut — finger flapping…head shifting…licking everything, licking his arms, licking others’ arms…sucking his shirt collars till they drip…chewing everything…picking his cuticles till they bleed…rubbing his ears until they are raw…grabbing himself, there…you get the picture. We’ve tried a lot of things — diet, supplements, re-direction, distractions, etc. — but in the end, the best success was temporary.

Someone told us early on that if a stim wasn’t impeding function, leave it be. I didn’t really agree then though, and I don’t know. Stims can be dangerous, and stims can be unhealthy. Stims can also scream “I HAVE ISSUES.”

One of my son’s doctors calls his stims ‘tics.’ But tics belong to Tourette’s, and my has autism, not Tourette’s…right? So stims are stims, and not tics. Is it semantics, or are stims ever really tics? Is the defining factor the ability to stop the stim?

Someone else told me years ago, when I asked what we could do to help my son, “It depends all on how autistic you want your child to be.” In a way, I agreed — I could deal with the way he was, or I could work on helping him more. So away I went, finding the latest and greatest to help him. Then I realized eventually that only in a perfect world could I make it all go away. Sure, we can improve things, fix some things, change others, but I don’t want him to be autistic at all, yet there it is, he’s still autistic. Stims are part of the category of things I’d love to fix, but can’t. Yet if a stim isn’t impeding his function, do you spend time and energy on stopping it, if it takes time away from teaching social and behavioral nuances and behavior?

My son’s stims rotate. Typically, he has about two or three going at a time, and they each rotate for about two months. The only non-rotating stim is his need to constantly move his hair up on the top of his head, and to twirl it. (He’s got long hair, a wish of his. Initially, he said he wanted to hide behind it so he wouldn’t have to see people, and while he no longer says that’s the reason, I still wonder.) Anyway..his current stims are scrunching up his mouth as though he’s giving a kiss while scrunching his nose like the person he’s kissing smells really bad. And he does it over and over and over. While eating, reading, playing Guitar Hero, bathing, falling asleep..it’s incessant. Mix it with the other stim-of-the-month, stretching his mouth longwise as far as it will go. When I ask him why, he says it’s because it feels good, yet other times he appears entirely surprised that he was doing it.

Is this stim hurting anything? No. Is it obvious? Heck, yes. I realize that the ‘obvious’ part of it is my problem, and a problem I need to get over. My son’s very verbal, and many of his behaviors are via yelling, screaming, saying inappropriate/mean things, sometimes combined with hitting, yelling, throwing things, running away, etc. People in stores don’t take to that stuff very kindly, but I’ve found that when your child looks funny, people also stare. My husband’s great at telling me to ignore it, but I’ve got a ways to go on this. Meanwhile, these are still stims I want to fix…or should I?

I’ve talked a lot about vaccines and thimerasol/mercury, and you’ve probably seen a lot of about it in the media lately. But, the latest is that the emissions from mercury can contribute to autism — makes sense, right? Makes you wonder, too, where else this has happened.

Risk of Autism Linked With Mercury Emission (MSN Health)

Doing a little more research, I found that this has been a concern for approximately three years now. (Mercury Pollution/Autism Link Found: U.S. Study — from CommonDreams Newscenter) Ever wonder why the general public isn’t told about this?

Yet, there’s mercury in CFLs, the wave of the future for energy saving lightbulbs, touted all over as THE way to go. Think twice, and at least read the disposal directions for those lightbulbs..and what’s involved in the cleanup should you break one.

My house is not a green house. We’re working on it, small steps at a time. But, I do know that we have to carefully consider anything brought into our home. Do yourself and your family a favor, and do the same. Even things touted as green, safe, environmentally-friendly, etc., aren’t always as safe as you may think.

 

I’ve got some strong feelings on vaccines — I’m one of “those” people, you know, the people who don’t want anti-freeze components, formaldehyde (yes, the stuff used to preserve dead bodies) and thimerasol (a form of mercury, known to cause mercury poisoning symptoms) injected into my body or my children’s bodies. I also feel that, hold onto your seats, we parents know our children best, and — still sitting down? — should have the right to determine what our children are exposed to, taught, administered, fed, etc. Silly me, I know, I live in a ‘free’ society, yet I expect that freedom to extend to my parental rights when the government insists that it knows better about vaccines. For now, I still have the freedom to say yes or no to vaccines, so I use that right. I also educate myself about all vaccines, not just the ‘mandatory’ (not) school vaccines, but those that continue to crop in and make big money for pharmaceutical companies. The HPV vaccine won’t come near my girls (unless they decide when they’re adults that they want it, and so far, my 19 year old daughter has read enough of the fine print to know that possible death or severe illness is less preferable than being smart with her body) and no one in my house has gotten the flu vaccine in years.

Interesting thing about the flu shot that many people don’t know is that it only protects against the strain(s) of flu that the manufacturer thinks will be the strain(s) to worry about that season. Check out this article (2007-2008 Flu Vaccine a Failure, Worst Flu Season in 4 Years, WiredPRNews.com) for some details on what an awesome (cough) job this most recent flu vaccine did. Was it really worth the dose of thimerasol that came along with it?

While thimerasol may have been taken out of regular childhood vaccines, there’s a common misconception that children stopped getting vaccines containing thimerasol back in 2000 or so, when in reality, manufacturers stopped putting it into newly manufactured vaccines, but the vaccines that had thimerasol were still used until they expired. In some cases, they were used years later. So if you think your child wasn’t exposed, you still might want to review their records. Lot numbers on vaccines are tracked, and you can research to find out exactly how much mercury your child was exposed to. It’s rather scary, and honestly, I have yet to research it on either my autistic son  born in 2000 or my epileptic (but no brain damage/injury — in other words, no reason found) daughter born in 1995. I already know I should have said no to vaccines. Maybe one day I’ll do the math.

However, let me be clear. I am not anti-vaccine. I am pro-vaccine. However, I am pro-SAFE-vaccine. The unnecessary garbage in the current vaccines needs to be removed before they are safe though. Sure, it might cost a little more to manufacture safe vaccines, but aren’t our kids worth it? Current vaccine schedules expose our children to something like 36 vaccines in the first three or so years.

I believe autism is caused by a child being genetically pre-disposed to autism, and when they are exposed to some toxin, they then have autism. (This would be why not all children who get vaccinated get autism, a common question I get.) Obviously, I’ve simplified that but you get my drift. For some kids, this could show from birth onwards. I know people who feel that their child’s autism wasn’t caused by any toxin or environmental issue because they were ‘different’ from birth. (And I’m there with you, my son was different from birth.) However, a lot of those people forget that their child is given a bunch of shots there in the hospital, and within days of birth, then weeks, and then months. In our case, my son was easily irritated, wanted to be tightly wrapped, stared at ceiling fans, didn’t look at us much, and flailed at startling sounds from birth, but at around 18 mths or so, things worsened. Does that mean the autism ‘began’ at 18 mths, or just that his developmental delays started to become more evident? Hard to say, but I fully believe that had I not given him the vaccinations that I did (and we didn’t even do them all) that he wouldn’t be in the same situation he is today. Who knows, maybe some other toxin or medicine or whatnot would have contributed towards autism, but we’ll never know, and therefore I can’t rule out the vaccines.

I run into more and more people questioning vaccines. I respect those who don’t agree, but that doesn’t mean that vaccines can’t be improved upon to make everyone happy. The weird thing is that most of the people I know who believe vaccines are innocent don’t have a child on the spectrum. Hmmmmmm.

And for people that think that an unvaccinated child could endanger their life or that of their child’s? If your or your child’s vaccines work, an unvaccinated person poses no threat. Another hmmmmmm.

With 1 in 150 children being diagnosed with some form of autism, people need to realize this is an epidemic, and there’s no such thing as a genetic epidemic. Something out there is causing it, and we need to figure out what it is. It’s Autism Awareness Month. Wherever you are on the topic of vaccines and autism, public awareness is key to getting the funding out there for the so-needed education and advocacy. My mantra? “Educate, advocate, and love.”

 

 

On Saturday, I took ds on a trip to the library. That may not sound like much, but trust me, it’s a big deal. BIG deal. First I have to get him to agree to go; then I have to actually get him to go. Once he goes, I have to hope he cooperates. Actually checking out books is like step #37. Still, I prevailed. Once in the children’s section, he told me, in no uncertain terms, that he was a ‘big kid, responsible.’ Based on that, I left him in the children’s reading area. He was SO proud. What he didn’t know is that I was less than 10′ away, with total visibility, sitting at a computer checking where the books I wanted were located. After I made my list, we hit up the children’s chapter book section where he was thrilled to learn that Junie B. Jones books were available for checkout. Lots of them. Who knew there were so many?

After choosing four chapter books, we headed to my section, where ds insisted on sitting at a table reading “Boss of Lunch” while I gathered my books. After much reassurance from ds that he’d be “fine,” I left him at a table in the midst of my section. Again, with total visibility, and he’d have had to pass me to leave. But he didn’t. He was glued to Junie B. Jones. Glued. I’d go so far as to say he was disappointed when it was time to go to the checkout counter…until he realized he could be my helper and put the books on the scanner.

Fast forward a few minutes, and we walked to Starbucks where he orded his favorite drink, using one of his nicknames. At least the cashier got a laugh. Then on to Bath & Body Works, but we were sidelined by a visit to the Earth Day fair in the quad, where a local utility company was giving out pinwheels. “Would you like a pinwheel?” “You mean, for free? Of course!” And there it began. Other than being asleep and at school, the pinwheel hasn’t left his hand. The walk to the car from Bath & Body Works, where he ran back and forth at the door, putting the pinwheel in the wind, was one of the funnest moments with my son in a long while. Not only was he just plain happy, but it was innocent. There was no autism. There were no mood swings. There were no behaviors attracting nasty looks from others. Just innocence. He swung the pinwheel around, blew it, turned it every which way, and just watched it blow in the wind. I wish that walk had lasted five times as long.

We live in a wind tunnel. I’m always the one complaining that my rose bushes are decimated, my huge barbecue and glass table blown over, and the leaves torn off my trees…yet now ds can take his pinwheel out back and stare mesmerized for such a long time. Thank God for the wind.

Dh and I took a weekend away this past weekend. We went to see the Nascar race in Phoenix, and left the kids at home. (We have two older teenage kids, 19 and 18, who were able to work opposing work schedules so there was always someone at home.) They got to order pizza (so much for a dairy-free dinner) and watched The Last Mimsy. Friends came over daily, and meltdowns were at a minimum…without school and errands to go on, he was happy…unless you count an incident at church where someone still doesn’t really get that him hiding under the table is not a discipline issue and shouldn’t result in discipline.

Anyway, a successful weekend. Dh and I had enjoyed a huge full-all-day breakfast at Cracker Barrel on Sunday morning, first time there ever, and we spent a good 30 minutes shopping their old country store for candy and toys from ‘the good ole days.’ $60 lighter, but pounds heavier in toys and candy, we toted in the huge bag and handed out the goodies to the kids. Cheers! Ds decided he wanted to take a bath so he could try out his new balloon-propelled wooden boat. Sounds great, right? He loved the way it jetted around the water and giggled when it ran into him. I stepped away, dh close by the tub, only to hear “Are you okay? What happened??” accompanied by a gagging sound. Apparently when you blow into the tube on the boat, you can get a few remnants of the wood taste in the tube. Odd taste/odd texture/funny taste in mouth=disaster. He didn’t like the ‘stupid’ toy anymore, and he was really mad at it. Okay, you don’t have to play with it. He got out of the bath where the offending toy was, jammied up, and five minutes later, he found me downstairs long enough to tell me “I frew the boat in the trash, Mom.” Then he calmly walks away.

Anyone want a very gently used balloon-propelled boat? I promise, it really doesn’t taste that bad.


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