A Shot in the Dark

Good grief when will this end?


I wandered on over to a forum to read. I can read, but if I post, then I get sucked into it all over again.


The forum is pretty dead, except for one section. Diet and Biomedical treatments for autism. Strangely, there are a lot of postings about chelation, which is neither dietary nor biomedical. Why are people still doing this to their autistic kids? Do they not understand that chelation is NOT a cure for autism? Guess not, because they are still doing it, sometimes for years on end. Here's a thought--if you've chelated a kid for years, it might be time to give up that ghost.



Chelation can happen in several ways. But I am getting ahead of myself here. What exactly IS chelation? In layman's terms, it's a chemical treatment to rid the body of harmful heavy metals, developed to remove lead from soldiers and sailors who were exposed to high levels of lead, and later, mercury and arsenic. Sounds reasonable, right? Patients were diagnosed with heavy metal poisoning, given treatment, and that was the end of it. The treatments did not span years or decades. You can read more about chelation here at Wikipedia.



Why are parents of autistic kids treating their kids with chelation? Well....I don't know. The simple answer is that the parents are desperate. Desperate to cure their child of his or her autism. They've been misinformed that their children are poisoned via childhood vaccines, and they've bought it hook, line and sinker. Hey, I am not judging here. I've been desperate myself a few times. But there are many studies refuting the vaccine-autism link. I tend to err on the side of caution and I am not about to subject my autistic child to a potentially deadly procedure to cure him of his autism. More importantly, I am not about to torment and torture my child.



The following are posts on a public autism support forum. I've changed the names of the people posting, but the posts are directly copied from the forum.



Question for anyone who is doing or has done suppositories



Poster #1: We have just started to do EDTA supp. our DAN just told me to keep minerals 6 hours away from the supp. He also had us add Selenium to our protocall. My question is I give it at night right before he is about to fall asleep. Is that when you give it and is there anything else I should be doing? I want to make sure I am doing it right.

TIA



Poster #2: good questions.. we will probably be starting DMSA suppositories soon..



Poster #3:

We weren't told to separate the suppository from any minerals.
We do the suppositories at night. I find the whole process goes a lot faster when my child is asleep or nearly asleep. Also, make sure the child has had a BM first.

Poster #2: XXXX, it doesnt wake your child up?



Poster #4: administer glycerine supp a few hours before bed, they'll poop, then give chelator when child is fast asleep



Poster #2: thanks XXXX.. I just worry that if I do it while hes asleep that he may be scared to go to sleep after that lol


Poster #4: doubtful...Get your husband to wrestle with child while you insert supp.


Now, my DS knows all about supps. Sometimes it's a chore, but I cannot stand seeing that belly when he hasn't pooped so in it goes.



Poster #3: Oh she wakes up but she's so groggy she falls asleep right afterwards.


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Here's the part that got to me:
Get your husband to wrestle with child while you insert supp.

WTF. I mean, really. So it's okay to wrestle with a child while you are shoving something up his butt. Something that does not even work. Chelation will not bring back the child you never had--the one without autism.


Let me get this straight. This kid is being given two suppositories--one to empty his bowels, which is most likely NOT medically indicated, and one to remove heavy metals from the child's system, which is also NOT medically indicated. And it's OKAY to wrestle with the child while shoving a suppository in.



This is not new. The first time I read about chelating suppositories on that forum was years ago, and the typical approach is to wait until the child is alseep, then sneak in the child's room and attempt to insert a suppository, all while the child is asleep. Poster #2 hit the nail on the head when he/she worried about the child being afraid of going to sleep after that. No really. You think? If I woke up to someone shoving something in my butt, I'd be afraid to go sleep too! Years ago a young and very misguided mother wrote on the forum about how her son would actually go to sleep with his hands over his butt. He got wise to the night raids and made an attempt to protect himself.



I apologize for the repeated visuals and use of the words "shove" and "butt" in this post but for crying out loud, this is not necessary! It is not helping!



Many parents report huge "gains" from their autistic child after rounds of chelation. Thing is, most parents see the same "gains" from their autistic children regardless of treatment. Autism causes developmental delays, not a developmental halt. So kids will improve with time and maturity, as well as with many PROVEN therapies. Some kids will improve dramatically for a time, then lag a bit. And hey, that's kinda normal, right? Even typical kids seem to develop in waves, correct?



Again, suppository is just one form of chelation therapy. There are transdermal patches, oral medication, and IV treatments. An autistic child died receiving IV chelation treatment a few years back, but it's not stopped parents from trying it on their own kids. These are the same parents who claim that vaccines have caused their child's autism, and here are the side effects of chelation, again from Wikipedia.

There is a low occurrence of side effects when chelation is used at the dose and infusion rates approved by the U.S. FDA as a treatment for heavy metal poisoning. A burning sensation at the site of delivery into the vein is common. Other side effects include fever, headache, nausea, stomach upset, vomiting, convulsions, bone marrow depression (dropping blood cell counts), a drop in blood pressure, cardiac arrhythmias, respiratory arrest, and hypocalcemia. Other concerns include kidney failure, which can require permanent life-limiting and expensive dialysis, or cause death.

2007 research with lab rats indicates giving chelating agent DMSA to rats without high levels of lead may cause lasting cognitive damage.

When EDTA is not administered by a health professional for the treatment of heavy metal poisoning more serious side effects can occur.

Chelation therapy can be hazardous, even conducted with the FDA-approved chelation agents. In August 2005, botched chelation therapy conducted by an ACAM member killed a 5-year-old autistic boy; a 3-year-old nonautistic girl died in February 2005, and a nonautistic adult died in August 2003. These deaths were due to cardiac arrest caused by hypocalcemia during chelation therapy. Only the 3-year-old girl had been medically assessed and found to have an elevated blood lead level and resulting low iron levels and anemia, a proper medical cause for chelation therapy to be conducted.

More than 30 deaths have been recorded in association with IV-administered disodium EDTA since the 1970s.

Wowzers. So it's okay to treat an autistic child with chelation? NO. It is not. Check this out, just in case you missed it.

2007 research with lab rats indicates giving chelating agent DMSA to rats without high levels of lead may cause lasting cognitive damage.

Cognitive damage may be caused if the child does not have high levels of lead but they are chelated. And is lead in childhood vaccines? Nope. Is it possible to cause cognitive damage with chelation? Yes.

When EDTA is not administered by a health professional for the treatment of heavy metal poisoning more serious side effects can occur.

Well that's lovely. What you see on the forums all the time are parents acting like doctors, telling other parents what to use, how much, and how to trick insurance companies into paying for it. Really. They will tell each other which codes to use because the treatment is not paid for otherwise. Because it is not medically indicated.

But it's okay, because so many parents do it, right? Wrong. It's not okay. Autistic individuals should not be used as guinea pigs. Chelation is not a valid therapy for autism.

It horrifies me to imagine being a child asleep in my bed, dreaming sweet dreams, and waking to find that my mom or dad has entered my room, my bed, and finally, my person. Sleep should be sacred. And if your kid has resorted to falling asleep with his hands protecting his butt, it might be time to reevaluate your priorities.

Can you hear me now? Good.

Sometimes you have to be a total jerk to get things done. Now is that time.

My autistic son has been in public school since he was 3 years, 1 week old. Yep. He started preschool a week after his third birthday and has been in the same district since the beginning. What this means is that he has had no less than 6 IEPs since he began, but really, there are more than that since we have frequent reviews.

On the IEP, there is a space for Parental Concerns. For the past six years, I have duly noted my own concerns about my son. In the beginning, there were many concerns--academic progression being one of them. However, the one thing that has remained consistent over all this time has been my concern with socialization. I want Eli to be as successful as he can possibly be in all areas, no surprise there, but the academics are pretty solid. So as time has passed, my concerns have shifted to only social ones.

I'm a pretty patient person. I realize that many educators, along with parents, are still learning about autism and how it affects an individual in ability to hold conversations, pick up cues from others, and how well they can function in society, which for an 8 year old child means school. So for the past few years, while I have noted my concerns about social awareness, coaching, etc., I have remained patient and understanding. That time has passed. I am PISSED.

When Eli was in kindergarten, I voiced concerns about bullying. I was reassured that no bullying would be tolerated, and that the other children were very kind to Eli. In first grade, after assisting with a classroom party, I was approached by a little girl, asking if I was his mom. She already knew, but I told her that yes, I am Eli's mom. She said to me, "He's really bad sometimes. Did he flunk kindergarten? Is that why he's older?" ..........................

Great. So here is a child attempting to get Eli into some sort of trouble by telling me he is bad, and she thinks he's stupid for repeating kindergarten. I explained that no, he did not "flunk" kindergarten, he did it twice to help him out. First grade was not a great year for Eli. He was repeatedly removed from his classroom and sat in the hall much of the year in a so-called Thinking Chair so that he could regroup. Gee, I wonder why he fell behind academically? Could it be all the time he was sitting in the hallway when he should have been in the classroom? Maybe...

This year he was sent to the hall. Once. When it happened, I raised such a stink that it has not happened again. So, what is the solution this year? Sending him to the Special Ed room for a third of the day. He is being removed from the class--again.

I was a little surprised by this revelation, and it has taken me some time to really process it. However, it did explain a few things. First off, it shows me where some of his recent behaviors might be coming from. While he is completely able to dress himself and did so consistently last year, this year he refuses, saying, "I can't." There are several examples of what I call Learned Helplessness going on, and I don't like it, not one bit.

Secondly, it explains why he is so reluctant to speak up in class. If he is spending such a large amount of time outside the class, he is obviously not comfortable there. I mean, there he is, minding his own business, just starting to settle in and POOF! Yanked out. And they say our kids have trouble with transitions. So yeah, let's compound the transitions several times daily--that ought to help, right?

Third, it tells me why some of the kids have indeed begun to target him. They feel that he is stupid. After all, he is taken from the class at least twice a day for extra help. The other kids don't need that help because they are smarter than him, right? Wrong, but that's how the kids perceive it.

I need answers. I have questions. Why is he being removed? What's the basis for this decision? Who decides? Should he be taken from mainstream and put in Special Ed full time if he is so impaired? What is best for HIM?

Sunday night was a rough one here. Eli refused to bathe himself. He yelled at me for getting water into his eyes when I was rinsing his hair and called me stupid and mean for doing so. Afterward, he apologized but he was sobbing as he did so. He told me that he hates school and did not want to go back. He said there are bigger kids at the school who call him stupid and make fun of him. He said he wants to be a different person, that he tries hard to be nice but people are still mean to him.

So there IS bullying going on. He is being targeted for being different, plain and simple, and it is escalating. He is not one to tattle, so the school has had no idea. Even though there is a NO BULLY policy, when is the last time a kid bullied another in plain view and earshot of a teacher? What, just because they don't see it, that means it isn't happening? Don't insult me. It happens a lot, and the general policy is if no one saw it or heard it, it didn't happen. Furthermore, when Eli gets upset he gets hard to understand. His words get garbled. He is stressed. So even if he tells what is happening, who is going to believe him?

I'll tell you who. ME. MY FAMILY. MY FRIENDS. We love Eli and believe him when he says these things are happening.

Back to the IEP. Social coaching and awareness skills. I can't help but think that if I had been listened to for the past several years, that perhaps he would be a bit further along. Not as far as his peers, but maybe he would be a little less behind. So now, I am being a bitch. A total PITA parent. I am writing emails and meeting with staff and I will NOT be silenced by frustration. I am tired of hearing that "Autism is a serious developmental disability and he is always going to have social problems, and this is going to be very hard for him." Really? Ya think so? Gee thanks for cluing me into that since I really had no idea. I know all that, which is why I have been asking for more social help for THE PAST SIX YEARS!

Eli can and will be successful with social interaction. He is bright, charming, incredibly cute, and yes, even funny. He has so very much to offer society, and society will benefit from him. But for now, it's still an uphill battle and one that I am prepared to fight. If I have to be a bitch to get what is best for him, so be it.