I’m going to piss off a few moms. Sorry. Bear with me, please. I’m doing this with love and 13+ years of experience. LOADS of love, including tough love.
Last month I was invited to speak at a local autism summit where there was a nice mix of education, technology, and biomedical topics covered. I was up last and I spent about 30 minutes going over what we did, what worked, what didn’t work . . . basically, the foundation of my son’s recovery from autism.
And it was work. My son worked, I worked, my husband worked.
After my talk, I had a couple of moms contact me to ask me questions, go over their children’s stories. I’ve given a few of these talks and find that the questions and the comments all seem to circle back to one thing:
Did the biomedical interventions really work, or would my son have recovered anyway?
Oh for heaven’s sake. Really?
I’m going to be crystal clear:
My son would NOT have recovered without the biomedical intervention and support.
So, no, if this is the path you want to take, I’m not going to give you a pass on the diet, the supplements, the appointments, the research, or the work. I’m happy to share exactly what we did and tell you how long it took and what kind of setbacks we had along the way. I don’t want to scare anyone off. This recovery business is not for the faint of heart. There are no guarantees, and you’re going to have to WORK to find out what helps your kid. It’s not magic, and it’s not pure luck.
CAVEAT: Here’s the other side of the coin: I’m not going to judge you if you’re not up for doing the work. No one volunteers for this when they first bring that tiny baby home. I try to operate with the world view that everyone is doing the best that they can, even if their best is piss-poor. If you want to try, I’m here to help. All the Thinkers are here to help. But it’s like leaving cash on the table to just walk away and not try. How can you NOT try?
The Rev has a saying, Do The Work. Not do the cry, the whine, the drinking, the avoiding, the blaming. Work is hard. It’s dirty, it’s messy, it’s not always fun, and it’s a slog. As my steel-mill-worker grandfather used to say, “That’s why they call it work.”
Dear Lord don’t hate me, but you probably haven’t tried everything. In your heart of hearts, you know this. If you have to go lock yourself in the bathroom and run the water so no one hears you cry when you admit to yourself that you really didn’t do everything, go do it. Best to be honest with yourself and get clear on where you are. Then you can figure out where you’re going and if you have the heart and the fortitude to see it through. And I know this because of the number of parents who come to me and say:
I tried the diet and it didn’t work. Which diet? Did you go all organic, non-GMO? GAPS? Specific Carbohydrate? Low Oxalate? Low FODMAPS? Modified Atkins? Full ketogenic? Did you run a food IgE and IgG panel? Oh, you didn’t? You tried switching to gluten-free waffles for a couple of days, and you didn’t see anything? Ah.
I tried everything, and it didn’t work. I have a couple of friends who truly have tried everything for their kids, who are non-responders or slow responders, and it’s true that even with the best care in the world not every child can or will recover. But you know what? All children can improve, and that improvement is not limited to an arbitrary “window” some “expert” came up with. There are a few new things on the horizon, and some of my “tried everything” friends are trying these newer modalities and they’re helping. And I bet there are STILL a few things they haven’t tried.
We all get caught in our story of what we’ve done, and sometimes we need to shake things up, seek a new view. Because guess what, you haven’t tried everything. I haven’t tried everything. Have you turned off your WiFi at night? Have you dealt with your own health issues (because the Thinking Moms are finding that our kids get better when we get better)? Have you heard of the success some parents have had with the new detox footbath? Medical marijuana?
I can’t get the supplements in my kid. They didn’t work. Of course they didn’t work. My life would have been so much easier if I could have just smeared the supplements on my son’s skin. Would you like some suggestions? We ended up plugging our son’s nose and syringing the supplements in directly, and then blowing on his face to make him swallow. Have you tried that? It sounds mean, but I bet if it was something like an antibiotic, you’d make the effort, right?
We had the tests run that showed exactly what our son’s nutritional deficiencies were. Those supplements were necessary and we treated them as such. You could also invest some ABA or therapy time into learning to swallow pills. My kids take pills on a little spoon of sorbet. I bury it in the middle and down it goes.
That doctor doesn’t know what he or she is doing. Even a broken clock is right twice a day. If you’re new to this, how do you know the doctor didn’t know what he or she was doing? Oh, it’s the one I suggested? Okay, let me just say that if this is one of the doctors I just told you helped recover my son, stop right there. I’m happy to help you identify a good practitioner. Also, a personality conflict with a practitioner doesn’t mean they don’t know what they’re doing.
We ran all those tests the doctor suggested, and we were just out a lot of money. I’d be happy to go over the reports with you and we can look up what all those levels and numbers mean online. I’ll help you draw up a list of questions for your doctor. I bought a book on lab test interpretations because my notes from doctor’s explanations didn’t always stick with me. I needed to look things up several times. The tests don’t fix your kid. You’ve got to address the issues the tests uncovered. Also: don’t spend the money and the effort to run the test if you’re not going to address what the test reveals.
I’ve taken my child to so many doctors . . . I’m guilty of this one with my everything-but-not-autism kid. I dragged my son to a couple of doctors and got overwhelmed and couldn’t manage everything, and switched practitioners.
At first I blamed one of those doctors for nothing working for my son, then I realized I wasn’t pulling my weight. I wasn’t doing the work. Of course the protocol wasn’t delivering. I wasn’t delivering. My bad. I mean it. MY bad! I took a look at where we were, figured out the reason I’d dropped back with all the supplements was poor compliance, a complicated dosing schedule, and not-so-great results. I took a step back, figured out what would work and proceeded from there. It’s tricky, but sometimes the work is figuring out what YOUR kid needs.
All this doesn’t mean we didn’t come across a few bum, unhelpful doctors. What I have learned is discernment. I’m better able to figure out if a doctor can help us up front, that includes being able to tell if I can work with a doctor. For instance, the doctor at a top research hospital who told me that there’s nothing neurologically wrong with my middle child (subsequently diagnosed with epilepsy) and whatever I thought I saw, it was just poor parenting and bad behavior. That doctor? Yeah, no, that’s not going to work.
The sheer number of doctors doesn’t matter if you gave up or if you didn’t follow through. It’s kind of like going to Weight Watchers meetings doesn’t make you lose weight. My pile of Paleo cookbooks doesn’t get dinner on the table. Going to doctors alone is full of Try, maybe even Try Hard, but it’s not the Work part of the program
The work is tough. Sorry, it is. No part of this is cheap or easy. It’s not fun, it’s not glamorous, and it takes time, but it’s what you have to do. Day by day, meal by meal, one therapy session at a time, one syringe of supplements at a time. So, put your big kid panties on, and deal with it the best you can.
When we started on this biomedical, road-less-traveled journey to help our son, I was looking for things to not suck. Lofty goal, huh? I wanted the constant running in circles to stop, or the hellacious transitions to ease up. I went into this willing to crawl through glass for 1% improvement. I couldn’t look more than 4-6 months ahead. But step-by-step, my son kept healing. We didn’t change who he was. That was always there. We just helped him heal and helped him shine.
So suit up, superheroes, we’ve got work to do!
For more by Zorro, click here.
You said you would be happy to share what you did, how long it took etc.. I would very much be interested to know what your childs symptoms were, what you did, what seemed to improve what, and how long it took. Though I admit, how long it took, is nice to know to be prepared, but won’t make a huge difference since, lets face it, we are all in this for life! So… if we can help get our children and ourselves improved quality of life to whatever degree, I don’t care how long it takes! Do you have a link where you have already gone into detail. Or can those interested follow a FB conversation or email… what ever really… Thank you! XO 🙂
I am happy for all children who are on the way to get better. I have a need to write just a little about our 7.5 yrs old fight for my twins (identical) with seizures. It is sooo hard to watch they regress all over again, loosing words, motor skills… Then in better times they regained some skills (but not those lost) to loose them later. It is hard, hard work. We went from post-West syndrome to first step with 2.5 yrs old, to loose all gained, complete collapse due to repetitive infections; first sentence at 3.5 yrs old, all lost; regained walking ability at 6 yrs. Now we had the longest good period – 5 months, but bad is on the way again… Other girl is even worse story… playing piano with 10 fingers when cca 2.5 yrs old, despite seizures, drugs, inability to sit, stand, just started to crawl.. sentences and words at 3 yrs; all lost, seizures out of control, 7 different drugs tried. She is not stable for years, but she have some voices now, two words (she probably don’t know what they mean), she can make 1-2 steps by herself. She is also on the way to regression (again), affecting her left side of the body.
We tried a lot of things, diets, and are currently performing AC chelation with some success and rotation diet (without results). I don’t know how I would survive next regression… I is so difficult to watch them suffer so much, when they cry, scream, fall… I think only person who could help us now is Robin Goffe, because the hardest regressions were connected with infections. Also, there are digestive problems… Dr’s are no help at all… Most of them tell that’s their “disease”. point (and end).
Thank you for this. It hit hard and true. We played around with biomed therapies and, while actually seeing some good things (MB12 gave our son speech, another supp gave our younger son a calmness he’s never had, etc), we haven’t even scratched the surface. We are now geared up for healing. We are hitting it hard and going to stick with it.
Also, thank you for saying that there isn’t anything that heals everyone. What’s going on in my son’s body might not be happening in your child’s body or our neighbor’s child’s body. They are unique and to pretend that one things fixes all discounts that beautiful uniqueness. With absolutely nothing else started (no diet, not even a multivitamin) MB12 gave my child his speech. I know people for whom MB12 made their child rage and it was just torturous almost. What if I said there is no healing without MB12 shots? Yeah, it would be a lie. We have to test, research, watch our kids, research and talk more to our doctors, give feedback, get feedback, did I mention research, and the list goes on. We also have to be patient. So many of us came from an immediate gratification world. Oh, sore nasty ear, give this med twice a day for 10 days and it’s all better. No more crying baby, no more fever, no more nasty ear. But these things can take cares, just one single treatment can take years, to be fully realized in our kids bodies.
Excellent example with the MB12. MB12 is an integral part of a number of bodily functions, notably the methylation cycle. There are a number of ways that methylation can be disturbed. If it is one way, MB12 can be fantastic. If it’s another, it just exacerbates the issues.
My son recovered. It was rather brutalising but we are grateful every single day. Agree on everything. People shouldn’t say “this will cure everyone.” It’s disillusioning to parents when it does not cure their child. A better statement would be “this worked for us and we believe in it.” Yes, it’s a lot of work. And yes, it’s a marathon but I think recovery is out there for most people. I had to stop working, too. How anyone could work full time and get done what we had to get done is beyond me. I’m not saying it cannot be done. I’m saying I couldn’t have done it and stayed sane or cared foe the other children. We did gf/cf diet, ABA, and pfeiffer clinic bio medical. Glutathione I’v. B 12 shots. Wow. Lots of things. It kind of all worked. The key for us was to jump in fast with the diet and ABA. People said the most amazing things to us. Your son wasn’t as bad. Wrong. He was severe. You have the money. We sacrificed hard. You don’t work. I worked full time until I couldn’t. The diet doesn’t work. When I hear that one I feel frustrated. But as stated some kids are physically sicker than others. But food is important in this game and has to be changed fast. Like…all my son will eat is yogurt and cereal. Well, th child simply cannot be allowed choices that make him sick. That’s parenting. Love to all and the very best of luck! It’s an adventure foe sure!
Hi, I see that you went to the pfeiffer center. I am taking my son to Mensah Medical . He is under the care of Dr Bowman and Dr Mensah( both doctors used to work there) Do you have any advice for me?
Check out what we did to help Ryan reach his full potential. He is now an aerospace engineer. Recovery isn’t easy and there is no magic bullet. I wrote the book, ” I KNOW YOU’RE IN THERE- Winning Our War Against Autism” Preview it on Amazon or my website http://www.autism-and-treatment.com. All profits go to spread the word that Autism is medical and TREATABLE! I gave Dr. Mensah a copy of my book when I met him at AutismOne last year. But don’t know if he ever read it. I thought his lecture was brillant.
Hey, Thank you for the reminder and the confirmation of what I have felt for a long time! Our son is 10 yrs old. We started the diet at 3 1/2 yrs old. The school system was saying he would be in the most intensive classroom situation for those most severely delayed. He was non-verbal, not making developmental gains, didn’t sleep, self-stimulated, never slept, and had given me 2 concussions during meltdowns. We started the GFCF diet in October of 2008 by January ’09 we were seeing remarkable improvement. We went to a Biomedical doctor in January of ’09 and he gave us several more suggestions from going GAPS to checking for yeast, metals and more.
We are happy to report that he just finished 3rd grade. He is a big talker, mainstreamed, only has 1 1/2 hrs of resource a day and learned all of his times tables through 12. He was re-evaluated in March (2015). The school psychologist could tell he was mildly on the spectrum. Had his classroom teacher and myself do one of the autism surveys. The results were stunning! He qualified so mildly on the spectrum that he would not have qualified for services through his autism diagnosis unless I pushed for it through the medical field. He did qualify as being language delayed but that was ok because it ensured that he still get his extra supports for the rough days.
Did it cure him of autism? No but it made it livable for him and us. It helped him to shine and be the silly cut up that he is. To have friends and girlfriends.
Was it hard work? Oh YEAH!! Did it take planning around therapies, meals, parties and other special events? Did it stretch my cooking skills to try new things like making fortune cookies? Yep Did it mean short vacations to family’s homes instead of Disney because of money being tight? Yes but family is totally worth it! Have we been disappointed that restaurants refuse to try to work around things? Yes.
Has it been worth seeing my boy flourish, grow, develop personality, and best of all amaze his teachers, friends and family? OH YEAH!! I would do it over in a heartbeat!
I have a love hate relationship with this post. I hate it because I have a five year old and it FEELS like we have tried everything in the last three years since diagnosis. Yet we have made so. little. progress. And when I say try, I mean with all my heart and soul I have stuck to the diets and every protocol. I have gone to the doctors and the homeopaths, done as much research as I could handle, and then I got up and did some more. We have done the blood tests, the allergy tests, and the EEGs. We have been tenacious with the follow through. We have been steadfast in the implementation. Have you ever done an enema in a tent on a camping trip because you are trying to keep life normal for the rest of your children? 😉 I got to a point where I just couldn’t try anything more without feeling like it was one more person or product that did amazing things for someone else but wasn’t going to work for us. BUT, I also love this post because it reminds me that we HAVEN’T tried everything, the foot baths for example, and stem cells. We are looking into those as well. So thanks for the reminder to keep keeping at it and to not feel sorry for myself. LoveTMR. I love that you guys are here. I love that any time I have reached out to any of you, you have responded. You all are amazing!
You mentioned enemas…if you were doing Kerri Rivera (Healing the Symptoms), I would highly recommend contacting Robin Goffe, who has branched off from Kerri and incorporates antiparasitic herbs. This, in conjunction with the diet (which the protocol calls for: GFCFSFSF), is the only thing that has helped my sister, now 35. Cognitively there are still only baby steps, but my mother, who has hated the idea of medication for over a decade, was about to put her on medicine because she got so bad, right before they discovered this.
But seriously. I have more respect for Robin’s results. Check her out. She will write back to you on fb. The protocols are *always* work, but this is far less expensive than some other things parents are trying…doesn’t require blood tests and so forth. And, while there are some recommendations of where to buy the herbs and all, the choice is up to you. There is no one distributor (or 12) pushing you to buy their product.
I wish you the best and pray for healing for your son.
I would like protocol how do i get it
I also was ready to throw in the towel. I went from doctor to doctor all over the country. I was able to do that because my husband was an airline pilot. Most times I knew more about autism than the doctors I went so far to see. Recovery is the hardest thing I have ever done. But it is possible! My son is now an aerospace engineer. Check out “I KNOW YOU’RE IN THERE” on Amazon. I wrote it for warrior moms like you.
Thank you for this article. It is timely for me. I have a neighbor that I handed our beloved DAN on a silver platter to. They are still vaccinating, not following his protocol, not removing any allergens, etc… It’s none of my business, all I can do is pray for them. I am so afraid their little boy will get a new vax and be gone forever. I don’t get it. Our DAN has been amazing. He literally saved my son’s life. We’re not all the way there yet, but we have come SO far, miraculously far. They’ve witnessed it too! But, as I said, it’s none of my business, it’s not my child. I feel so angry though and this article vented my anger for me. Thanks! Yes, it is hard work, so very, very, hard. But, not as hard as seeing your child suffer. That’s even worse.
Best thing I have ever read. Thank you
Very good. My daughter is now 44 years old. I was so frustrated with parents saying to me, “oh, my child is worse than your child.” I was so tired of excuses and people not realizing the commitment involved. So, I wrote a book with my process… It’s all about Robin! .Autism: Believe in the Future from Infancy to Independence. There was no switch to cure autism AND the goal should be employment and community inclusion. I know so many individuals with all kinds of diplomas but unemployable…
Ann’s book, “Autism, Believe in the Futures” shows why we can never give up. Ann started the medical treatment for her daughter, Robin, at 28. When she started, her goal was to stop the screaming. She had no idea that because of treatment, Robin would one day live independently, and have two jobs. Remarkable story of why we can never give up until we find the answers for our children
I would love to try all the things, but money doesn’t grow on trees and insurance doesn’t cover much more and medicaid covers close to zip. I love how people can say did you, can you, well why don’t you and somehow manage to have the funds to do this stuff. I would love to go to a MAPS doctor, I would love to have the option of ABA therapy without having to be out $6000 first before insurance kicks in, I would love to try every diet oh but wait it has to be all organic, it has to be all non GMO, it has to be all or nothing but my grocery budget doesn’t allow us to spend hundreds of dollars to feed just my son. Run testing, sure if insurance will cover it because Medicaid sure doesn’t, I brought this up to my doctor yesterday and she is like Medicaid won’t cover it but feel free to call BCBS. Andy Cutler Chelation, we have been doing it over a year and have seen mild gains but nothing like what other parents have experienced and we are doing it religiously, by the book, on the forums, so no it isn’t a fix all. We are supporting and supplementing and are broke as hell doing it.
Things suck less because we do many of the things listed but many things are out of our scope. I think this needs to be kept in mind more, there is a reason the tough love approach doesn’t work with our kids and it doesn’t work with us. I am often shocked at what I am doing/willing to do versus what I see in children in my son’s class but we sacrifice so I can be home with him and do all ther therapy that he can get and do all the things we can afford. I don’t think that makes me less but I do have to be crafty and many people from dual income households just can’t, it isn’t a won’t but there is a reason we are exhausted. I will continue to look and to try but sometimes articles/comment sections like this are good and sometimes I come away feeling, mannnn it must be nice if your kids respond to diet, or man it must be nice if your kids respond to AC chelation amazingly well, it must be nice if MB12 shots made your kid talk and didn’t turn them into a head banging drooling mess, it must be amazing to, amazing to, amazing to…..
I sure hear you. No vacation, no days off. Seven days a week we go, so our vaccine injured child will stand a chance.
Thanks for writing this. You are so right there are no shortcuts off Autism Island. My son is now an engineer doing all the things the “experts” said could never happen. I wrote the book “I Know You’re In There -winning our war against autism” You did it faster than we did! Check out Ryan’s recovery story at http://www.iknowyoureinthere.com
If the small intestine is toxic, might it be retoxifying any effort you are trying to a degree. Could it be making everything harder and slower to see results?
Word!!!! Recovery doesn’t happen overnight. But when it does? Well it’s friggin’ GREAT! When we were getting discouraged, we did ATECs every three months and did see steady if not slow improvements. Our final key was chelation, Cutler low and slow. But we did it all — diets, therapies, barking at the moon — everything we tried helped, even if a little. Thanks to the moms who showed us the way.
If only people would START with Cutler! 😉 This recovered our son!
hi sunny how dic acc helped ur son what supplements did u use
LOL on the “barking at the moon”. We are on round 18 of ACC.
Thank you for this post. It was good timing for me and something I really needed to be reminded of. I have been working hard – oh so hard – with my daughter for 3 years now. Within the past year, especially, we have made great gains but have also hit some major roadblocks. This has drained me of energy, both emotional and physical. Reading this post helped to remind me what a very long road this really is and the importance of not losing hope when the road gets hard to navigate. I also need to continue fortifying myself with these types of posts because there are so many naysayers out there who are eager to tell me that I have to “accept this lifelong disability”. I accept the challenges that we face today but I refuse to accept that recovery is not possible.
Love it! XOXO It for hard work. Recovery is possible. 🙂
My son is fully recovered. No diet, no aides, no therapy, regular school, friends, profound awareness & observation, etc. It’s all gone, every symptom.
The difference is that I regret many of the doctors, testing, even the draconian G/C/S free diet. And the therapy! Oh, do I regret the therapy–what a waste of money!
What worked for my son–and I STRONGLY believe would work with every ASD kid if parents would do it correctly–is the Cutler low-dose, frequent chelation protocol using ALA and some DMSA. Period. End of story. Forever and ever. I think all our kids are metal toxic and all the “symptoms” are just manifestations of that poison. There are not “different kinds” of autism, just different expressions of the same assault.
Alas, most people just won’t get up at 3am to dose their kid, since the protocol requires dosing every 3-4 hours, round the clock for 72 hours. They just won’t. They modify the protocol to suit their needs, “We’ll just double the dosing before going to bed!” Nope, sorry, it doesn’t work that way. You’re right, it IS like losing weight, won’t work if you go over your points for the day…and this protocol WILL work if you do it correctly.
And here’s what’s amazing about it–it’s cheap (you can buy ALA otc–for now) you don’t need a doctor, and it’s easy and safe. A phone with a timer is great, however!
My son is 100% recovered. He was once non-verbal and had a DX of “moderate to severe.” Autism is like a nightmare that our family recovered from–and it just about wrecked us, the finances, my marriage. Sometimes…sometimes…it’s like it happened to someone else. But it was no overnight fix–it took 4 years. I only wish I’d started it sooner. 🙂
It’s absolutely terrific that YOUR child responded so well to one relatively easy and cheap treatment, but despite your conviction (and the experience of countless others) there are MANY people who do years of low-dose Cutler chelation (properly) who don’t get anywhere near the results you do. For them the mercury is far less of a contributor to the overall toxic load the child bears than it was for your child. I will say for the thousandth time that there is NO treatment that works for every child. NONE. You need to know your child and your child’s history very well as well was the available treatments out there in order to sort through and find what will help your child’s health improve. MY mix will be different from your mix, which will be different again from Zorro’s mix.
My son wouldn’t live through the cutler protocol — or any of the other chelation protocols and many of the supplements. He lost over 80% of his small intestine long before he got his autism diagnosis. We have done SCD (really GAPS but before it was GAPS), and he has done amazingly well. He is confounding to his gastroenterologists, but he still has autism. I can’t say that anything we’ve done has eliminated that or the intellectual disability he has, but it has made it possible for him to LIVE, and that is what matters to me. He is (KNOCK ON WOOD) never in the hospital and didn’t miss a school day this year for illness. I wish every day I could take back his vaccinations — all the ones before I stopped with varicella at 17 months — but I also wish that his bowel birth defect had been caught before the volvulus that nearly killed him. I have learned that it is all relative. Our kid, especially, is difficult to treat, but he isn’t untreatable. I’m not sure what his future holds, but I am so happy he has one!
@Professor TMR: We’ll have to agree to disagree on this one. A couple thoughts:
>>I mean no disrespect, but unless you have used the protocol, you have no way of knowing if it was administered “properly.” Not sure why some of the people you mentioned would do AC’s protocol for “years” without results? If they got *any* result, then they could have gone all the way.
>>I started the ASD “journey” (ugh) almost a decade ago, and have been in nearly every online group around–some still going–many defunct, and *every single* time a parent/grandparent/caretaker said that the Cutler LDFC “didn’t work” for their kid, I (and others) asked specific questions. And EVERY time, there would be some mistake–no exaggeration. Here are some common ones:
1) They skipped doses (there are a lot of people who just won’t get up at 3am to administer the dose)
2) They overdosed with too-large amounts of chelator, usually stressing the adrenals (faster is not the goal here)
3) They neglected to treat for yeast and/or bacteria properly, thereby masking chelation progress, and gave up.
4)They only used DMSA, and no ALA (you must use ALA to cross the BBB to get full recovery). This is a biggie.
5) They did it ‘once in a while’–you really have to be hardcore if you want results. So.many.parents. would say, “I’m just too tired?” Imagine if someone only did the Weight Watchers diet 1X/month?
6) You can’t make up your own protocol. For the first year, we did a round (min. 72 hours continuously) every weekend. The next year we did it 3X a month, taking a weekend “off.” We did it more over the summer, we used every long weekend to do longer (more than 72 hours) rounds.
My husband was a huge help, I know not everyone has a partner who will help so much. It consumed our lives (I have other kids) for years, and we completed nearly 200 rounds. It was anything but “easy.”
>>Mercury is the not the only culprit. My son was, as most ASD kids are, toxic from several metals: lead, cadmium, antimony, aluminum, nickel. These metals bound up bacteria, yeast, viruses in his body, and were eventually resolved once the metals drained away, slowly over time.
>>I had a different goal than most mothers. I didn’t want “improved health.” I wanted recovery. I tried everything. We had the fancy DAN (the interventions & diets are too numerous to list) we also did ABA, ST, and OT. We did lots of things that ‘improved’ my kid’s health. But looking back, I think of them as Band-Aids that lessened symptoms, did nothing to produce real recovery. They took a lot of my time and energy, and an insane amount of our money.
>>My idea of “recovery” might be different than it is for others. I wanted the whole enchilada. I have never heard of a child who *fully* recovered (no diets, no allergies, no supplementation, no aides, no special ed, no ASD symptoms, etc.) who didn’t do Cutler (continuously) for years.
I’m not going to answer every detail, but I didn’t say the people who did AC’s protocol for years got NO results, I said they didn’t get the results YOU got. Some people do hang onto protocols long after they stop doing any good, but most eventually give up onerous ones that don’t do a lot. Perhaps I know a different group of people from you, but I’ve talked to a LOT of people who are VERY conscientious about getting protocols right. Some of them have had fantastic results with AC chelation, others have had pretty good results, and others have had next to nothing. Most mothers I speak to are in full agreement that they would love “full recovery.” And many have found that, despite their hopes and getting up at 3:00 A.M. and doing hundreds of rounds WITH ALA, they still did not achieve “full recovery.”
And I HAVE heard of a number of children who ARE fully recovered who did not do Cutler chelation for years. Some didn’t do it at all. Check out the story of Raun Kaufman in Son-Rise,which was originally published in 1975, long before Andy Cutler developed his protocol. Raun Kaufman runs The Autism Treatment Center of America and wrote The Autism Breakthrough himself. If you meet him, you will see that he bears not a trace of the severe classic autism with which he was diagnosed before the age of two. I mean no disrespect to you either, but what worked for you is in no way guaranteed to work for every child on the spectrum. I wish it were.
For those who have done stem cell therapy, please email me and share the provider you used, where you went and the contact info.
Great job explaining from a tough love perspective. It is so hard. I also just stay focused just 4-6 months ahead. Helps so much to tackle things in those shorter time gaps.
Hi Kris I can relate to so much of that as I used to go over to my daughter’s house every evening to hold my grandson whilst she syringed supplements into his mouth. We gradually progressed from this to 14 years later he now pops his pills in his mouth by himself. We have held him down for blood tests, injected him in the bottom and so much more. Yes we have slackened off of late partly as older grandson (Aspie) has been struggling and both parents are working one does tend to run low on energy. Dealing with Autism is a huge drag on ones emotions, own wellbeing as well as ones pocket. We have come a long way but not far enough! New ideas/treatments would be interesting to hear. Thanks Linda.
I love your shoot from the hip style. I was feeling despondent since a few weeks as things have been going slightly downhill. To be honest I have been slacking too. But your blog snapped me out of it. So am ready to suit up as I got work to do.
Ugh, that’s a tough message and I couldn’t agree more. I’ve always liked Yasko’s quote on the subject: “It’s a marathon, not a sprint.” At some point in this journey, I learned to manage my expectations for the timeline of my daughter’s healing, and I learned to take care of myself physically and spiritually, both of which helped a lot. I also learned that the care of my daughter is collaboration between myself, my husband, and her doctors – it takes all of us doing our part. There simply is no single magic pill, serum, or doctor, (and GOD how I wish there were)! It’s a different perfect storm of events that led to these conditions in each child, and it takes time to unravel the mysterious damage and address each one of them.
But you will never find a more rewarding or life-changing mission in life, that much I can guarantee.
Bravo! Love to have a support system that literally holds my hand through the journey though.
Hello, as interested as I was to start reading I did not see one more option – stem cell treatment. Why not? I am sure you must to hear about it and search at some point. I like to share with you my experience. We took our son at age 14.5 for that and even didn’t recover him totally it did make immediate changes. Aggressiveness was gone, small words came out and comprehension with memory improved significantly. Before I could not take him to any public place without worry what may happened and now he goes everywhere including church. I love to see more vocabulary and it will try again soon save for one more since is so expensive. I did study which stem cells are not so god and may develop cancer etc, my choice so far – 5 years- is a victory.
Hi Malgorzata, we don’t know many people who have done stem cell therapy (probably due to the cost and the fact that it’s at least somewhat invasive), and we know fewer who have gotten long-term gains from it. That’s why we don’t talk about it much. It’s great to get the benefit of your experience.
Can you please share some more details with us such as what type of stem cells were used, how long was the process, which doctor you used etc…?
Thank you for the reminder that not all children are alike, and will respond in the same way. You are so right in saying it does take a lot of work and that there is no easy fix. We have to stay our course and be patient with the seemingly small results. there is always a possibility to reverse autism if we try.