Warning: contains swear words and other stuff to piss you off
I call a time-out.
There have been rumblings and grumblings on some of the Facebook groups I’m on that the latest and greatest intervention for treating autism is a scam and it’s hurting kids and it’s a disaster and the people who started it don’t care and are in it for the money and . . .
For “latest and greatest” you can insert any of the following:
IonCleanse foot baths
Fermented foods like homemade sauerkraut
But wait, there’s more . . .
Specific Carbohydrate Diet
I’m not even kidding.
I’ve been in the trenches for 14+ years and every single intervention ever discussed — EVERY. SINGLE. ONE. — goes through the same routine. Early adopters get excited and tell everyone they know and bring as much evidence as they can to support what they see. News spreads, more people try it, but the importance of the evidence starts to wane. Next comes the frenzy as everyone jumps in desperate for something that works.
Inevitably, someone’s kid goes south on it. And I don’t care what it is: some kid is allergic to too much sunshine; bone broth causes glutamate problems in a sensitive kid; someone freaks out about all the metals floating around in the foot bath tub.
Then, the retribution against the early adopter and the providers starts flying. And it gets ugly fast. Explanations get shot down as being defensive bullshit. Anything less than an abject, groveling apology is interpreted as arrogant greed. Dissent and anger breed distrust and a potentially helpful intervention is left in the dust.
I’m one of the few “old-timers” who stayed around to reach back and help other moms navigate this confusing scene. There are so many factions and egos and true believers and strict protocols and old-fashioned freak-outs that valuable information gets lost, potentially helpful interventions get kicked to the curb before anyone can work out the kinks, and knowledgeable providers are harassed into bailing on us as a community.
Everybody take a deep breath and calm the fuck down.
For the angry moms who are ready to take my head off:
I get it. No one likes to be told to calm down. But this situation, where you are defying popular opinion on how to take care of your child and using alternative approaches, requires excellent problem-solving skills. Dropping truth bombs and getting worked up with righteous indignation simply isn’t the best way to do it.
This is how a lot of moms and dads feel:
The is how the rest of the world sees them:
Not a pretty sight. And it’s not effective in getting what you need to help your child. Yeah, that’s just my opinion, but I’ve been watching this unfold over and over again for more than 14 years. The sad truth is that people don’t like to listen to angry moms. (Seriously. A study just came out that confirms what we all know: angry women get ignored) They won’t listen; it doesn’t matter how right you are. I’m not saying don’t feel the anger. I’m saying refocus, listen so you can learn, and find another way to communicate.
Your goal is to solve the problem — whatever challenge or question that might be. Eyes on the prize, baby.
If you can’t do it, align with someone who can. Holster your weapons BEFORE you engage. Do you want to be right, or do you want to help your child?
A note to care and product providers:
The autism alternative treatment world looks like it’s full of promise and you may have the single most amazing intervention ever in the history of the universe, BUT . . . These kids are fragile. Way more fragile than you expect. Things will not go as planned. Your miracle won’t be universally loved. And you’ll be expected to be able to back your offering up with solid information . . . science, even. The moms are emotionally damaged (hello? PTSD like a combat vet) and every setback and non-miracle feels like an additional injury. Try not to take it personally. Even if you are pelleted with crap like being called a greedy, heartless, stupid pHARMa shill.
Be forewarned and study up on detoxification, nutrition, digestion, mitochondrial function, viral load complications, and immune system basics. These moms are smart and they’re driven. Try to have compassion for where they are and what they’re going through. If you can, distill off the emotion of how they’re telling you something and concentrate on what they’re telling you.
Let’s meet in the middle
We can absolutely, 100% make this a win-win situation.
Okay, Team Mom. I’m gonna level with you here. Your job is to learn everything you can about how your kid works — how well he detoxes, what his allergies are, where he fits in. Is he more sensitive than other kids? Tougher than other kids? Are there other kids you’ve seen or heard about who remind you of your child? If so, connect with that mom and compare notes.
That also means you need to have a pretty good understanding of how the body works. Yes, it’s hard and there’s a lot of know, but you need to have a basic grasp of detoxification, nutrition, digestion, and immune system function. Need help with this? Stay tuned . . . we’ve got your back. In the meantime, check out www.AutismOne.com and www.autism.com for video presentations.
Also, nothing works for every kid. Please don’t take that personally.
Know your child and know yourself. Keep an eye on what’s going on with your child.
As my wise friend Shawty says: “A key thing to remember is look to our kids, not necessarily the labs! You can test the same individual minutes apart and get different results. Is lab testing critical? Yes. Can lab testing help you navigate? Yes. But, at the end of the day these are children. It should be ONE piece of the overall picture. If I have my son rocking the world and yet he comes back with a funky OAT, I don’t go nuts. I keep going until other things warrant changes.”
If there’s an intervention, like medical marijuana, homeopathy, Restore for gut health, or the IonCleanse foot bath that we at the Thinking Moms’ Revolution are excited about and have had a generally good experience with it, we will share it. And we will also have a webinar available with information from practitioners and providers.
This is information you need to be able to make a good decision. If you’re not feeling it, you’re not ready, you’ve got questions . . . this is the best time and place to bring them. But please, please, please, we are asking you to listen and to learn as much as you can so you can make the best decision for your child.
Everybody play nice
I’ve got three boys. They fight a lot, insult each other, call each other names. But they’re boys, and they are still learning. When this happens, they get separated and they get a mini-lecture on what respectful behavior looks like and what it doesn’t look like. If I’m not too stressed, because, Lordy, the conflict wears me out, we try to problem-solve better ways to get our needs met. They’re kids.
I really hate getting online and seeing similar behavior. We can do better. All of us. If you let anger and righteous indignation be your jet fuel, you’re going to flame out. In this community, we have to do better. We may think we’re bringing down the hammer of justice, but if everyone else just thinks we’re bringing on the cray, we don’t get anywhere.
Okay, here’s where I tell you that you need to take care of yourself. You need to deal with your anger and disappointment and frustration so it doesn’t choke you or get in the way of your #1 job: Loving your child and helping him achieve his potential. And I struggle with this myself. Every damn day. But it’s important!
Now, get back in the game. No hitting below the belt. This is not WWE or a prize fight. It’s a freaking IronMan, and the finish line is w-a-y over there.
For more by Zorro, click here.
Autism Warrior Parent’s and Warrior Educators that claim a Child Does not have Autism need to learn the Truth. Autism Warriors aren’t just fierce Advocates, they are also Parent’s, Educators, Lawyers, and Family Court Judges and Child Protective Service agency reps that DO NOT BELIEVE A CHILD HAS AUTISM then they point their finger at one parent or the other claiming that the Parent caused the Child “EMOTIONAL DISTURBANCE.” Which is a Form of Child Abuse. So the “Good Guy Parent” gets blamed for Child Abuse onto their Autistic Child. Then the child gets taken away from the only Safe Person the child knows because the one parent that has been raising the child (Logan) since he was born who is currently 10 years old, gets taken away from the only parent that knows about Autism characteristics & Traits. People are so quick to point fingers and blame a parent for harming their Autistic child. I need help to get my son back home. He’s even been suicidal and I have bene told that I have even lied about that when he’s called me at 2am, 3am, 4am, 5am, many times telling me that he had a steak knife and was going to slice his throat if he can’t come back home with me. I cry weekly about this. PARENT’S / COMMUNITY ——— STOP BEING SO JUDGEMENTAL, (can’t have Mental without judging others).. Start Learning and Start Listening. If you disagree, fine, LEARN to AGREE TO DISAGREE. Keep your Opinions to yourself, or Discuss your opinions in a respectful manner without making enemies.
You all just don’t get it. There is no cure for autism. There CANNOT be a cure for autism, because autism is not a disease in the first place.
You’re right. We DON’T “get” that, because we know that there are many people who HAD autism who no longer have autism. Whether or not you care to call it a “cure” does not affect the fact that at least some people WITH autism can become people WITHOUT autism. Contrary to busting myths, you’re perpetuating them.
I have been counseling people on health matters for approximately 25 years. The approach I’ve taken is that dis ease is due to systemic toxemia, which I learned from dozens of my predecessors, some of whom were medical professionals some of whom were not. And that whatever maladies one may be experiencing are but local affectations of a systemic toxemic condition. And the route I’ve taken to hopefully bring my clients back to better health is self detoxification and not the kind where you take something. After my clients have been sufficiently educated, I suggest they book themselves into a special clinic for a nice long rest thus giving their body the opportunity to take care of some very old and not so very old house keeping chores. And the results are usually amazing by medical standards. I even have a colleague who’s written a book about improving her childrens’ health and describes the ‘before’ and ‘after’. So while this works for most, it depends on how compromised any one person it. Obviously the more compromised the lower the possibility of a full recovery and the less compromised, the better the odds of restoration of normal health function. So I’m not making any ironclad promises here. And detoxification is no Sunday picnic either – headaches, stomach aches, vomiting, diarrhea, skin eruptions, runny noses, the “flu”, fevers and so forth but these are how the body purges itself.
This is something that in my professional opinion should only be done under professional experienced supervision and not at home.
Thank you for publishing my post and others who clearly disagreed with some of what was said. You kept it real.
Out of all the posts on this thread Carolyn said it best for me:
“When I find myself highly reactive to failure (aka pissed off at myself, others, and “the system” and the entire universe) I eventually see that the root emotion is FEAR. Down and dirty fear. Raw survivial fear. Red flag fear. Like, I truly don’t know if I can fufill my mission of staying alive on this planet and care for my child, let alone HEAL myself and my child.”
Like Carolyn we wake up with it, go to sleep with it, pray to God to lessen it and most definitely project it on to our kids. You will see the evidence of fear every time you say don’t, or watch out, or stop or even fuck off.
I take back, somewhat, what I said about lack of commonality between us all.
Carolyn said it, if we are honest, we are all joined by fear. Problem is I think that ours rarely gets validated outside our own family/groups. It’s hidden and masked with other emotions.
ISIS? Earthquakes? Pedophiles, Global warming? Financial Collapse? IEPs? Scary stuff made 100x more frightful when your kids are disabled and vulnerable. Most of us never talk about the future. When we do, it’s often a very dark conversation.
To me, Fear is like a chronic yeast infection requiring just one cube of sugar to make it “bloom”. I do pray to God every day to help me with my fear, but then I read another news horror story or think about my sons’ futures. It’s difficult. I know you all feel it too. Yeast is treatable. Fear not so much.
Every single intervention listed goes through the same palava because they are touted as a treatment/ cure for autism on the basis of little or in many cases no evidence of efficacy or even safety.
Many people with autism have additional health issues which may or may not be associated with their autism. Others do not. We don’t know what the cause or causes of autism is/are or even if autism is a single condition.
Some of the interventions listed may have helped some children but there is no conclusive evidence that any of them can have any effect on the core symptoms of autism. Some of the treatments eg Chelation and hyperbaric O2 therapy are potentially risky. Many are expensive and completely pointless for most children with autism. There are people out there who use plausible pseudoscience and anecdote to promote the newest ‘breakthrough’ in the treatment of autism. Caring parents desperate to do the very best they can for their child are are ‘milked’ for millions of dollars every year. Sometimes by cynical crooks but more often by well meaning but irresponsible people who actually become ‘evangelical’ about a particular treatment because it appears to have worked for a handful of people. It makes me swear!
Part of the point, Catherine, is that yes, things are “potentially risky,” as pointed out there is NOTHING that helps EVERYONE, but virtually everything on the above list has helped a significant number of people significantly. And, yes, people get “evangelical” when something works for them, they also get “evangelical” when something DOESN’T work for them. ALL of it should be tempered by the knowledge that there are many interventions that MAY be helpful, but you should always get as much information on something as you can before you try it so you have a good sense of whether it will be a good match for you and/or your child.
Nobody has thrown the baby out with the bath water (nice pun btw). Those questioning minerals consistently stated that they liked the footbaths and they will continue to use them. What was questioned was the aggressive schedule encouraged by the TMR moms and that’s what this post is really about. Ego. There, I’ve said it. To write such a patronising post that presumes non tmr moms are ‘newbies’ and overly emotional is quite frustrating. I encourage everyone to read the public comments this post is referring to, you will see that nobody is being attacked.
CD ? Can you please share your experience? we’re suffering from mold illness (been exposed to toxic mold in our home) and some people are saying cd could help detox
Thanks for sharing
CD might be useful in clearing the mould from your home, it’s main use is as an industrial bleach. It is more likely to cause additional health problems if you ingest it in the dosages reccomended by the people who support its use. CD is itself highly toxic and should not be used as a treatment for anything.
I personally would not recommend it. I think there are better alternatives. Me… replying to you can get me in trouble with my fellow warrior moms. Cause some do like it and feel its good for their kid. So you have to really research it on your own. Think about IF its the right thing for you child. Its hard making these decisions. Best wishes! And I hope you can help your child heal.
Well said. Thanks for this. Sharing.
I think this blog would have beed better off focusing the criticism where it needs to be – on the companies and moms (yes certain autism moms!) who prey upon a desperate population and hock their products and services, moderate boards where only positive reviews are encouraged, are quick to delete or attack anyone who raises concerns and worst of all, purposefully fail to disclose their $ interests in a given product or protocol. If this post was inspired by the fb post(s) I’m thinking of, that mom should be commended (not derided) for having the courage to openly come forward and share with the community that her and her child had some really scary symptoms and labs as a result of a given product/protocol. Instead, she was attacked, criticized, de-friended, booted from the board in question (before being reinstated by another mod), etc. As a potential consumer and fellow autism mom I want to hear it all – the good, the bad, the ugly…in fact, I want to hear the bad even more than I want to hear the good so I can make an educated choice for my child who isn’t verbal enough to tell me how he feels. No one is a better expert than the mothers, NO ONE! That mom is a hero in my book, her only crime is in encouraging other moms to monitor closely and have labs done when using a certain product/protocol to make sure their children don’t suffer…she wasn’t bashing anything. I only wish there were more moms like her a few years ago when the cd protocol was all about the good, amazing, miracles and “recoveries” — and now years later, there are tons of kids whose guts have been ripped to shreds and who have never bounced back from the damage…but no one was allowed to post negatives so there you go, more families harmed. We were already duped once (vaccines), lets get the truth out there even when it isn’t pretty! We deserve that much. And shame on any mom (group, company, etc) who lets the all mighty dollar turn them against their fellow warrior moms and suffering children….
The problem is that people are (and have been, the author isn’t kidding by listing all those things that have gone through the same phenomenon) attacking GOOD people who are doing their level best to help others. What they are doing is NOT going to help all others, even though many believe that they can (if all you have is a hammer, everything looks like a nail — doesn’t work for the screws, and brads, and staples of the world). Unfortunately, it is up to US to know and be aware that NOTHING helps everyone, and there are simply no guarantees. Yes, we all want people to be honest about their experiences, in part because that’s the only way to discern whether a particular treatment is likely to help or hurt in your particular case, but that doesn’t make it constructive to throw the baby out with the bathwater.
Even “good” people can put forth a product or protocol that causes real harm and I for one want to know about it. There are many snake oil salesmen in the autism world and unfortunately its not always easy to suss the good guys from the bad…esp over fb where fake identities and any old nonsense can be put out there by just about anyone. But truth is any person/co who is marketing themselves or their protocol should just put on their big boy or girl undies and suck it up b/c their suffering at the hands of the mothers doesn’t even come close to that of the children they claim to care so much about. I want to hear from the mothers (who aren’t also selling)…no matter what, even when it doesn’t come out all rainbows and butterflies.
Does it ever strike you that when people talk about putting “big girl panties” they are usually talking about OTHERS? This post is about asking EVERYONE to put on their “big boy or girl undies,” NOT just the providers. You cannot expect civility and respect from them if you do not behave that way yourself. Well, you can, but it probably won’t get you anywhere.
Of course, people want the whole truth, and yes that means talking to the people who did not do well on a particular product. That is ESSENTIAL to getting a complete picture. But there are many people who approach an intervention as if they are one of the blind brothers approaching the elephant in the Indian tale. They grab hold of the tail and proclaim the elephant is “just like a rope.” Just because someone’s child does not do well on a particular intervention doesn’t mean that the intervention isn’t extremely useful in promoting the health of a large segment of the population. Often we are so focused on the negative aspects of things that we can’t see the tremendous positives.
Let’s dig deeper.
The animosity and downright bitchiness between some parents glaringly points to the fact that we are not ALL on the same side. We are at the very best, on the side of our children. Our worst side shows up when our childrens’ interests are pitted against those of other children and we lose track (or don’t care) about anyone else but our own. The fact that much discourse between the so-called parent community goes on via the net makes it easy to blow off parents in true crisis or parents who think differently. There is also a very particular problem with victims of cognitive dissonance in the autism parent world.
Two of my sons have autism, one 17 and one 14, both have been subjected to my own eagerness to try what has been successful for other children in terms of medical/alternative help. At great expense, time energy and frustration, we as parents have experienced isolated feelings of overwhelming disappointment, financial expense, wasting of time and frustration at having made mistakes, allowing ourselves to be carried away by the feeding frenzy which occurs when something new hits alt med or biomed respecting autism and much more.
Sharing those experiences have more often than not resulted in denial, anger and patronising from other parents. Over the years, two extra mortgages on our house and every penny of our savings (minimal) was eaten up by trying new things (as well as by autism scavengers who over the years have preyed on gullible parents). Some of those scavengers were parents themselves.
After almost two decades me and my husband don’t engage with autism families. The parents who are new to autism are ready to try anything and the experienced parents are often too tired to dissuade them from folly. The ones in the middle soldier on, clutching on to hope based on an anonymous online Janey and Johnny who recovered from their autism. We’ve never made friends as such, just acquaintances. Jealousy, envy, anger, vindictiveness are just some of what we have encountered with other families. Friendliness didn’t enter into it. Friendship based on our kids having autism doesn’t really happen. There’s too much comparison and smugness going on for that.
With odds as bad as they are in terms of improvement, and with so much at stake anyone can see why fighting occurs. But make no mistake, just because your child(ren) have autism doesn’t mean you are part or considered to be part of a community. Autism is and was every man woman and child for themselves. Maybe the in-fighting could be lessened when parents become more honest about the fact there is no community. There’s just you. I think as parents we suffer from fight/flight syndrome and most definitely PTSD. Good communities can’t and are not built by emotionally and psychologically drained and battered leaders.
As for online in-fighting, my best advice is to stay out of online dialogue. It only takes one or two paragraphs on a facebook page to start a war. Who has that kind of energy or time? Eyes on the prize? For parents of a 5 year old that’s one thing. As the parent of a 17 year old, it’s something totally different. My experience would probably scare that parent. The friendship and community thing would have to wait a decade or so.
In between there will continue to be expletives, cursing, anger and of course attempts like this TMR post to admonish and reprimand. It’s all a bit sad really and I think the post is confusing as to what it was trying to say/do. I will continue to tell who I please to fuck off, whether online or not. After 17 years of fighting for my child (just me and my husband alone) I am inordinately qualified to spot bullshit, name it and shame it. When I do, I do it so as to lessen the impact of that bullshit on another unsuspecting naive parent who was just like me almost 2 decades ago.
There’s a whole book(s) to be written behind the snarky or angry comments of parents pitted against parents. Who really wants to dig deep and uncover the real truth behind them?
I think the thing that shines like a beacon out of your comment for me is that there is a REAL need for REAL community, and that few people have a group that they can trust to tell them the absolute truth about what they are experiencing. TMR was actually born out of just such a community. The parents who began it have been friends for 4-5 years. We have tried all manner of interesting things, some of them expensive, some of them not. It is a blessing to be able to have that kind of feedback on a daily basis. I think one of the strongest desires we had when starting TMR was to try to bring that dynamic to others in the broader community who do not have it. That may even be the most important factor in healing for both parents and children, people finding groups of friends they can trust who are going through similar experiences. But it’s something you have to take responsibility for to an extent. Surely you have encountered parents who have what you want, or who are in a similar place looking for a similar thing? The group dynamic can, and will, be a fabulous place to explore all aspects of healing if you choose to see it that way. But if you go around telling everyone you meet to fuck off, it should not be a big surprise if you find yourself alone seeing “parents pitted against parents.”
But if you go around telling everyone you meet to fuck off, it should not be a big surprise if you find yourself alone seeing “parents pitted against parents.” She did not say that she goes around telling EVERYONE SHE MEETS to fuck off! You just lost an opportunity to really reach out and show that the TMR community is real and cares instead you just alienated another mom whose not in your “club”.
I didn’t say she goes around telling everyone she meets to fuck off. I said IF she goes around telling everyone she meets to fuck off. Pretty straightforward. Sorry if that is alienating, but it is also true.
Oh zorro, you ‘knew you’d make people mad’ and yet this article is veiled as a call for peace. It’s this inherent contradiction that troubles me the most.
A little off subject but any good recommendations for detoxing metals? I have one son with adhd and another one with some sensory issues. Any other websites or are the ones above good ones? Thank you!
There are at least two big possibilities for detoxing metals include low-dose Andy Cutler chelation. It’s a fairly cheap, but relatively difficult protocol to do. Get DETAILS on the best way to do it. The other is the IonCleanse foot bath, which is significantly pricier, but much easier for most kids. Be aware that there are children who have tanked on both protocols, but there are many who have made tremendous progress as well. Investigate thoroughly and take it low and slow to begin with.
Excellent article and well said. It is all trial and error. We often even get sh*t for doing that (“experimenting on your kids”) but we all know it is the best alternative to the mainstream medicine which, for me, was no help at all. We need to hang together and be forgiving.
I have never commented here before (at least I don’t remember so).
I have been in the trenches for 20 years now.
I read your post as a battle strategy speech. Like afootball coach getting the team to stay focused, get along, work as a team, see the big picture, don’t let failure cloud your thinking. I hear that you KNOW how hard it is. I can feel that. I didn’t feel you were dismissing any emotion as being invalid. Quite the opposite. I think you are saying, hey, while we are communicating publicly on forums etc, can we keep the blame game down a bit??? Can we not go into attack mode when it only causes more panic and fear for others? Can we be fair about our assessments of treatments? Can we stop viewing drs as perfect saviors, so the the progress of treatments can grow and not be hindered by panic? I hear you saying timing and communication skills are important. Being kind to others is really important.
But then, I think, on the other hand… fuck all of that. How to vent or express our intense anger and confusion? When and where is that allowed?????? Anywhere? With anyone? No, we are asked to suck it up. We are told we need to vent our emotions or we are making our selves worse, indeed keeping in emotions could have caused the whole damn thing!!!!! ARGH!!!!!!!!!!!!!! Not what we want to hear.
What if our family won’t listen, our friends don’t understand, our doctors are confused and undereducated (at best) and unfeeling and harmful (at worst)? What if our child is suffering so greatly, our in the process of dying? What if we feel we are harming our child on a daily basis because we can’t access the treatments that work? What if “the solution” is always shifting and morphing and we can’t keep up? (who CAN?) It is just hell. We don’t have many places to go that feel safe to express this grief, so we can move on. We don’t have many people to go to that will truly listen. We don’t have a society that is good at listening, good at unconditional love and acceptance. We are CREATING that, but we don’t “have” that… yet.
So, in the larger view of things, “staying calm” can be wise and actually good advice. AND, also true, is that NOT staying calm is great advice!! Getting fucking angry and venting can open lots of doors. Like an electric charge. We need both!
It is a matter of momentum, perhaps. And I feel this post is trying to offer guidance in regards to the general momentum, saying “hold on, we are all about to go over the cliff together if we don’t stay calm and see the bigger picture”. I really, really appreciate that kind of leadership! So, don’t shoot the leader might be good advice.
When I find myself highly reactive to failure (aka pissed off at myself, others, and “the system” and the entire universe) I eventually see that the root emotion is FEAR. Down and dirty fear. Raw survivial fear. Red flag fear. Like, I truly don’t know if I can fufill my mission of staying alive on this planet and care for my child, let alone HEAL myself and my child.
What people often miss is that getting angry is WAY higher on the emotional scale than despair and depression (see Abraham/Hicks emotional scale). So pissed off people are actually getting back on track. They are pulling out of “I give up and want to die” mode. So when we are angry and we hear “calm down” we get more pissed off than ever. I think that may be what is happening on a grand scale.
Angry women/parents/patients are scary for the system to handle. Well, tough shit, really. I can’t imagine humanity healing without getting fucking angry as hell! But then, I can also not imagine humanity healing without staying super calm. Paradox. Paradox is where the real truth lies.
How to know what to do? Follow your intuition and to hell with it. If you want to yell at a doctor, and it feels like the right thing to do, do it. And then, afterwards at some point, reconnect with that doctor and explain in a more sober way your feelings. Personally, I know that holding in anger is extremely damaging to my health. And I dont’ want to teach my son to hold in anger (he already does, sigh).
Maybe we can all take turns! Okay, your turn to be the angry bitch, I will be the stable and calm one for a while…. ya know? We need to stick together as a force for change and be kind when we see our comrades losing it and attacking those who are trying to help. The good medical folks need our love and compassion, too.
We are living in a world where our children are poisoned and even genetically compromised on a mass scale AND we as parents are tasked with trying to figure out how to heal them because the offical system is ignorant and actually complicit in causing harm? Are you CRAZY? This is an insanely challenging situation!!!! It makes a football game look like a cakewalk. We cannot overstate the difficulty here. It is simply traumatic.
We aren’t ever going to “do it right”. Drop the guilt. In a very real way, this IS war. So it isn’t going to be pretty. But, let’s remember that what we eventually REALLY want is NO MORE WAR. Right? The ends don’t justify the means. The larger goal is to be able to solve these problems in a calm, rational way because that is the way mass changes are implemented. Attacking others isn’t stopping the war.
So, thanks coach for your speech. I think it held a lot of truth!!
I knew I’d make people mad. My oldest has recovered from autism, but I have 2 younger boys with all kinds of issues, including but not limited to ADHD, mood dysregulation, epilepsy, and reactive attachment issues. I’m still in the thick of it.
This was a needed read! thanks.
Thank you for the call to common sense and civility.
As a parent with a vaccine injured kid that had test results showing he was full of mercury. What’s being suggested in this article is much easier said than done. It was so difficult year after year to try everything under the sun and see little or no progress. I think the best bit of advice from this article to parents is this, know your child is unique biochemistry. Genetics testing might be a really enlightening way to get to the bottom of why your child is not detoxing. Kiddos with MTHFR will have issues with detox particularly methylation, so rule that out and spare yourself a lot of frustration. I sure wish I had known many years earlier about this. One thing I’m not gonna do is tell people to come down, you can’t tell people how to feel especially when you haven’t walked in their shoes in a while. I read that your son is recovered? congratulations, but for the rest of us who didn’t get the information in time and now have adults that require care, it’s insulting to tell read that you think people to need to calm down. Maybe you need to get back in touch with the reality of why people are not “calm”. Now that my son no longer lives with me, I have a chance to calm down. If you are enjoying having recovered child, then you also have had a chance to calm down, but people living with it every single day, not so much. Parents are desperate to get their kids well because they don’t know what’s going to happen to them in the future and they have to live with the day-to-day pain, heartbreak and stress of caring for severely damaged kids. They are tired and burnt out, and stretched beyond capacity and some are doing it as single parents. They are being told that their child injuries aren’t real, and in some parts of the country the government is passing laws requiring more vaccines for school attendance. They are barely trying to get through their day and some have been like this for years. So please don’t add to the load by telling them how to feel. Parents that are struggling need encouragement, understanding and information, not a trite rant from a parent of a recovered about how to feel. Perhaps you need to spend a week at one of these homes where a child is constantly screaming and in pain, were basically nobody’s functioning and just trying to get to the next five minutes. Maybe then you can remember what it’s like for some people and then rewrite this article.
Again, the article is NOT about NOT feeling what you feel. It is about how you EXPRESS it to the rest of the world. There are ways to express something that move you CLOSER to what you want and ways to express something that move you FARTHER from what you want. It is sometimes extremely helpful to take a time-out, step back, breathe, and remind yourself of what it is you really want. Attacking providers isn’t going to get you — or anyone else — closer to what you want.
BRAVO. That’s it. Just BRAVO!
Well done! I completely agree with this. My son has been a ‘non-responder’ to many of the treatments that I have seen really help others. It’s frustrating. I get it. But I eventually realized my son’s symptoms are quite different from the majority. I had to take a step back and really think about my son’s issues and what has helped him. That is when we really began to make progress.
We have been at this for over 8 years now. I can think of only 4 interventions that have really helped and none of them were among the usual treatments. The gfcf diet actually worsened his issues. Therapy was a nightmare. Supplements weren’t helping. Does that mean those interventions don’t help others? Of course not. And, frankly, the things that didn’t work taught me as much about my son’s health as the things that have.
clap, clap, clap.
Eyes on the prize.
This article isn’t about calling time out, it’s adding fuel to the fire and is inflammatory. Do you know how much guts it takes to go against the majority and raise issues and concerns? I thought you would have, being a ‘thinking mom’. Sigh.
The article isn’t about NOT raising concerns or “going against the majority.” After all, we do that ALL the time. It is about HOW to go about it and how NOT to go about it so as to be constructive rather than destructive. If you attack the people who are on your side trying to help you, you will alienate them and drive them away. Perhaps they cannot help you, but that doesn’t mean that they can’t help many others if they are NOT driven away.
Absolutely!! I see this all the time. Parents blasting doctors because they did not get an immediate response, or the doctor did not have “the answer” for their kid. No one doctor, no one treatment, is going to be right for every kid or every home. We tried CF but just could not manage GF. Could not afford Brain Balance. We found other ways to help our son and he is doing GREAT.
Take it all in and do what works for your child, your family, and your budget. Take every tidbit of info, research research RESEARCH the heck out of it. Maybe even try it. If it doesn’t work for your child, or makes him worse, try to figure out why and move on to the next idea. Even SHARE with others that it did not work or made things worse, so if it happens to another child, the parents will have an idea why.
Some of the things my son’s most amazing thinking doctor suggested or tried did not work for us or caused other problems. So we worked together to come up with new ideas and things to try.
Healing is a process, sometimes a long one.