I gave birth to a son on October 18, 2002. At the time I was 35 years old and completely clueless about the business of baby, the business of pharma, the business of the medical complex and the business of Monsanto. I was completely unaware I was standing in the center of a vortex that, when combined, would bring immune dysfunction, developmental delays, brain damage, oxidative stress, chronic inflammation and dysbiosis that would later result in a diagnosis called Autism Spectrum Disorder for my child.
We did not experience a sudden regression in skills after a particular event. My son’s development was on track and then slowly plateaued and then slowly regressed. He was gaining words, yet functional communication did not develop. He was obviously smart and had great motor skills when he wanted to use them. He did not flap, rock or spin as kids with autism often do.
Let’s take a look at what life was like in 2007 when my son, Spencer, was four years old and at the point of diagnosis:
- Sleep deprived. It took at least two hours for Spencer to get to sleep, and that was with one parent lying down with him in a dark room. Once he got to sleep, he never slept very soundly, so the smallest things would wake him up. Once he was awake, he would not go back to sleep. Sometimes he would wake in the middle of the night happy and hyper. Sometimes he would wake up in the middle of the night screaming. When Spencer turned one year of age, he stopped taking naps, so once he was up – he was up ALLLLLL day.
- Constipated. Life gets pretty miserable when you can’t take a shit. Then your shit gets backed up and it gets bigger and harder in your colon. Then your colon starts to expand because there’s so much shit occupying it. Then your body’s normal peristalsis isn’t effective at moving things along as it should. Then the toxins that are in the feces start to ferment and get reabsorbed back into the body, because it’s all just sitting there. Then because it is so hard and painful to have a bowel movement, you start to hold it in, because holding it in is less painful that passing it out. Fiber, laxatives, liquids, suppositories, prunes – nothing changes this situation, and the family schedule revolves around the poop. Looks like we might have a poop today – but who knows when. Can’t leave the house until we have a poop because if the urge strikes, we have to be available otherwise it might be a couple more days . . . I can still see my baby’s red face trembling as he struggled to pass a horrifyingly huge BM.
- Loud. Screaming, screaming, screaming. So much screaming. Screaming because of frustration, screaming because of pain, screaming because no one understands what he needs, screaming because nothing is helping, screaming because he is scared. Screaming, screaming, screaming. I don’t think it’s possible to adequately describe what it is like to live with a child who screams for the better part of the day and you can’t comfort him. Today when I hear a scream from another child – it sends me into a state of PTSD. My mind blanks out, I get horribly sad and shaken, and I’m a mess for the day and possibly the next one too.
- Isolated. Because of the screaming and the unpredictable nature of Spencer’s behavior at the time, we began to isolate. Trips to the grocery store became a respite opportunity for one parent. Tag-teaming was the only way to stay sane and balanced. We did nothing together as a family other than stay in the house and try to avoid any situation that will cause screaming.
- Brain numbingly repetitive. In order to feel safe and secure, Spencer started to require that things remain in absolute order. Sometimes that order actually looked chaotic, but to him it was order. Things on the floor had to remain in the right spot. Furniture had to never be moved. The drive home had to be done exactly the same way every time. Trips to the park had to be done in exactly the same way and in the same order every time. Life became about keeping the secret order of things rather than experiencing and learning. Prompting to do new things and to experience life outside of the secret order was met with screaming (lots and lots of screaming). If a store changed the display of something that was interesting to Spencer, it resulted in full-out meltdown.
- Phobic. The year 2006 marked the first awareness I can recall of phobias – particularly to dogs, insects and any bug in the house. The sight of any one of those pushes Spencer’s central nervous system into sympathetic mode, better known as “fight or flight”. No amount of soothing comfort from a mother or father can override the sympathetic system when it is full-on. And, in my son’s case, the sympathetic system stayed on most of the time from this point in time. Probably explains a lot of the screaming. Once, Spencer saw a spider in the living room of our house. No one else could see it and, because of that, it never got “taken care of.” He refused to go into that side of the house for at least two months. I had to coax him back to the family living space Hansel-and-Gretel style by placing jelly beans on the floor. From that point on, we had to show him the bugs that we captured/killed, and he had to watch it being put outside or thrown away.
I could go on, but I’m not sure that would not be good for my mental health. There is a measurement tool called the ATEC (Autism Treatment Evaluation Checklist) that measures the severity of the condition known as autism. The tool measures four areas: sociability, communication, health/behavior and sensory/cognitive awareness – the higher the score the more intense the disorder and, correspondingly, the higher the need for supports (and the lower likelihood for independence) for the individual. The rating goes from 180 to zero. In 2006 Spencer would have scored in the 130 range. I didn’t know about the ATEC until 2010, so I had to channel my inner 2006 to get an estimate.
The prognosis wasn’t good – the diagnosing physician told us that he would most likely not ever work, not ever live independently and would need to live in an institution later in life after we were no longer able to care for him. We were instructed to get any therapy we could, but not to stress about it and to just take him home and love him. In a nutshell, there was nothing that we could do to help him – but we could certainly try out some pharmaceuticals to see if that lessened any behaviors. All this from seeing a child for less than 30 minutes and not conducting any laboratory testing to determine if there was anything physically or biologically out of whack. There was one piece of information that the doctor provided to us that was useful, and that was a copy of the Parent Ratings for Autism Treatments. Drugs at this point were not an option for us, and I knew that there had to be SOMETHING we could be doing. It was from this rating report that we decided to try melatonin. I remember thinking that if we could just get this kid to sleep, that would be all I would wish for. Living in chronic crisis means being able to see only the most urgent need and being able to focus only on that one thing. Planning or hoping for anything beyond that urgent need is not an option. Sleep was an urgent need.
Melatonin was my gateway supplement to alternative health and this idea of recovering from autism. Within 20 minutes of getting the melatonin, Spencer fell asleep. On his own. On the living room floor watching a DVD. With all the lights on. Holy Shit! From that point on it was Game On – researching, networking, researching, studying, administering, observing, documenting, repeat, repeat, repeat. Some things worked great. Some things worked a little, and some things were meh. But it all provided pieces to the puzzle that have moved my son’s ATEC score down the scale. And we’re still moving. In fact, we’re moving faster today than we have ever moved. Recovery is possible, and it’s not just for the very young. It takes work and it takes an open heart, because I have had to look at the choices I made in the past and realize that, while they were mainstream and encouraged, they were harmful to my child’s individual biology. I took it for granted that the mainstream had my child’s best interest in mind. I did not know about the business of baby, the business of pharma, the business of Monsanto and the business of modern medicine. I know now, and that is why I share what I share. I’m good with where I am and the path we are on. I would like for people to not have to struggle as hard as I did to figure things out.
Only through healing layer by layer am I now able to see what went wrong in 2002, 2003, 2004, 2005, 2006 and most of 2007. My precious baby was not born with autism – it was acquired. He has a methylation defect that makes it very hard for him to detox things that he is exposed to. This defect doesn’t make it a given that one will get sick, but once your body is at a certain stress point the switch gets flipped, and it’s all downhill from there. My own methylation defect is actually considered worse than my son’s, but, because I did not receive the same level of toxic exposure as he did at such a young age, my switch didn’t get flipped. Too much stress, too much toxicity. This endless exposure to toxicity is causing an epidemic of chronic illness in our children. My child’s chronic illness just happens to be manifested as “autism.” You may also recognize chronic illnesses such as allergies, asthma, diabetes, ADHD, sensory processing disorder, cancers etc. It is estimated that 50% of the population has this methylation defect, and this effect of stress on health is called epigenetics. Your genes are influenced by your environment.
All of the following have resulted in a health condition that greatly impacts my son’s life: My nine dental amalgams, traumatic birth via C-Section, circumcision, commercial baby formulas starting at age six months, adherence to the CDC vaccination schedule up to year two, Tylenol, GMO and processed foods as part of the Standard American Diet and chemical exposures as part of what is now the Standard American Experience (plastics, herbicides, pesticides, heavy metals, parabens and phthalates). How do I know? Because I have read the science, I have done the testing and I have witnessed the recovery of health, communication, cognition and behavior by treating for stress, toxicity and immune dysfunction. And some of you may be thinking – my child had all that and he’s fine! And to that I say – not everyone who smokes gets lung cancer. Not everyone who drinks heavily develops cirrhosis. Epigenetics is the driver of the expression of health and illness.
Winning!
Over the last six years we have tried an amazingly long list of treatments and interventions. Thanks to the generosity of family, we can continue to explore new ways to support my son’s healing and growth. Tonight he told me spontaneously, after I mentioned something about the toilet flushing, “We have three toilets, one is downstairs.” Yes we do, buddy. Thanks for letting me know that you know that!
In 2006, Spencer’s ATEC score was around 130. In 2010 it was 97. Today it is 64. He does not scream. He sleeps. He poops regularly and without pain. He endures change. We can do things as a family without having an epic meltdown. He laughs and he notices and tells me how many toilets we have in the house. Not all days are great – we still have many ups and downs – but the downs are short lived and not as intense. And the ups are amazingly brilliant and bright.
Everything we do in this life comes down to a choice. I will forever regret not being more curious and vigilant about my choices. I was lazy and just accepted that everything was okay because people in authority told me that was so. Never again will I surrender that power and authority to anyone.
So while the title may lead you to believe this birth story was about my son, it is in fact MY birth story – a story of awakening and truth. And like any good birth story, this one is filled with pain, fear and panic, but ends with hope, promise and unending unconditional love.
~ Raven
Raven makes her life in the Pacific Northwest with her husband and 10-year-old son.
Raven image courtesy of Victor Habbick at FreeDigitalPhotos.net.
Thank you very much for sharing your story. I have two kids 10 and 7 that are both dyslexic and I was told it was genetic. My spouse/grandparents aren’t dyslexic and I can’t help but think that is it environmental. I am 22 weeks pregnant with #3 and am trying to get my hands on any info that will help lessen the chances of any health related problems that I have control over. Your post has given me a lot to work with. Keep on truckin’ with your son, it sounds like you are doing an amazing job, and he is making fantastic progress!
Thank you for writing such a great, informative article about your family’s journey. I learn something new every time I land on TMR!
Thank you for sharing your story. I admire your courage to share a piece of your life.
I personally don’t have an autistic child, but my children, all of them, suffer (or at least they did) from ADHD, OCD, dyslexia, depression, anxiety, and such.
We have come a long way and I’ll keep my story short. I’ve done much of what you’ve done, but I also came across a natural therapy that has helped my children. I was led to it through prayer and we’ve been having fantastic results.
You can learn more about it in a book called, “The Emotion Code” by: Dr. Bradley Nelson. You can learn the techniques yourself to be able to help your own family. If you’re not interested in learning the techniques there are many people certified to help you.
Dr. Bradley Nelson also has an additional program called, “The Body Code”.
I have found that by applying these systems together and by listening to inspiration my children are healing. They’re able to thrive now when they used to not. We’ve dealt with many similar situations that you have described in you article above.
The other book I was referred to read was, “Feelings Buried Alive Never Die” by: Carol Truman. I haven’t gotten around to this one yet, but am working on it. I’ve been engaged studying the other book and system I mentioned above.
I wanted to share this with you so you can continue on your journey to a better life with your son. It can only help and if not your not, you’ve made fantastic progress with your son.
I wish you happiness, healing, and the blessing to help your son be all that he was meant to be in this beautiful life.
Powerful story and testimony to the journey you’re on. This was wonderful to read and has a truth that applies to each of us. I love the twist on your birth story! 🙂
i love you so much for sharing this story.
Hi Raven, Your story is an inspiration for all of us ! What were your best interventions ? Thanks, and Bless you for all your work !
Hi Jim – Each and every intervention was important in understanding my son’s biology and needs. That being said, for us here are some of the top things: Living like my Great-Grandmother lived – no chemicals (in the house, on the yard, on the skin, in the clothing, in the bedding, in the food etc.), no processed foods – and it’s important to get back to some form of a Traditional diet that includes lacto-fermented foods. Diets to consider include GAPS, SCD, Body Ecology and Nourishing Traditions (Weston A. Price Foundation). Also removing as much EMF stuff in the house as possible is important (replace wireless phone units with corded phones, hard wire computers, turn off wi-fi signal at the source at night). Understanding a person’s Methylation issues is key (MTHFR). Improving visual processing skills has had a huge impact for my son but I don’t think it would have been as impactful if his environment and diet were not clean. Clean body, clean brain – build everything up from there. FINALLY, your energy and intention must be clear and pointed towards vision, not fear. All things are possible!!
LOL – forgot about regular Chiropractic care (for all of us)!
Praise God! Praise you for thinking! Praise all who heal and bear light. Don’t ever give up the fight!
So much in common. Garrett is ten. He poops, but he’s still pretty constipated. But oh the screaming. Not today, no. But from age 18 months until around age four. We did a lot of ABA. He was pre-verbal. We did Epsom Salts baths and an Omega 3,6,9. He’s mainstreamed. Still has social skills deficits, but he’s flexible, for the most part. He’s probably going to end up with a bipolar diagnosis to go with the autism diagnosis. And his ADHD is far worse than his autism. I would do more biomed, but I’m stuck in a custody split where the other party refuses to get on board. Oh, and he’s around 30 pounds overweight, which we are trying to address by counting calories. Not that he likes to count. Anything. Math sucks for him, but he can read and write well! We love the hell out of him, and that is the most important thing, I think. Thank you for writing this!
Thanks so much for sharing, what is a very similar story to ours and so many others I am sure. Very nicely written. It is comforting knowing others get it and understand. I’m glad I’m not the only one who has that reaction to screaming!
How do you test for this “methylation defect”? Powerful story…if only we knew who is at risk before they get shots etc…
There are a couple of ways to test. You can go to 23andme.com to purchase a test kit and they will run not only MTHFR but a whole bunch of other things that will give you a very comprehensive look at your genetic profile (saliva test0. The cost is $99 per kit and I think they are still doing a 20% off on any additional kits. The data you will get is ‘raw’ so after the results come back, you’ll have to find someone to help you interpret the data. This test is not covered by insurance as you are ordering it directly. The basic MTHFR (677 and 1298) can be done with a simple blood draw and if ordered by your doctor, should be covered by insurance. Any lab set up to do blood draws will be able to run the test. I wish we would have done this test years ago because it REALLY helps in understanding what supplements are going to be helpful and which ones should be avoided. This is especially helpful if you have a child who cannot verbalize how they feel. Good luck!
Your story is so much like my daughters that it brings me to tears. Thank you for sharing, and I hope things just get better and better for your son and your family!
Thank you so much for this! I am printing it out to have those involved with my son to read! You know, the ones who say I’m “going overboard” and “paranoid” with dietary changes. Yeah, them! They just don’t have a clue!
This sounds so eerily similar
to our story. I will forever regret not asking more questions early on and just accepting what the doctors told us (to keep breastfeeding and not to cut out milk from my diet while doing so). My son’s eczema was so horrific as an infant and because of it, his whole body became out of whack. It’s taken us a few years to get on board with the biomedical side of autism, but now that we’re in board, life for all of us has changed. There are so many more good days than bad and the greatest feeling is knowing that there is still more for us to do to keep improving our sons life. I love the “birth story” analogy. Love it!!
Thanks so much for writing this. This last year of my life I have been “reborn”. It took a health crisis in one of my children and a diagnosis for the other one to open my eyes, but I know that they will both be so much better off for the fact that I am now making all of their healthcare decisions much more consciously and deliberately. As I learned the hard way, the same doctors who are more than happy to dole out the antibiotics and vaccines are quick to dismiss you when the medical problems that result from these substances aren’t something they learned about in med school 20 years ago. It is a scary journey, but such a worthwhile one. Here’s to healing – for us all.
Thank you for your piece Raven. I coach adults with mercury problems and what you described sounds so much like what I hear every day but scaled for a child. Andy Cutler thinks that most autism cases involve mercury and your child certainly had the exposure. He also says that as long as you have to be on special diets and so forth your child is not “all better.” I really recommend the book “Fight utism and Win,” which explains how to appropriately chelate children. But perhaps you know all this.
Beautifully written!! Thank you!!
Thank you Emily!
Thanks for sharing… What is monsanto?
Hi Bob – Monsanto is the leading producer of Genetically Modified Seeds (GMOs) and the producers of Round-Up (glyphosate). They started as a chemical company producing great products such as Agent Orange, DDT and PCBs. Upwards of 90% of the corn, soy and sugar beets in this country are GMO so unless your diet is predominantly organic, you are most likely consuming these GMOs daily. This article gives a pretty good summary of the issues concerning health and GMOs – but I always recommend people do their own research!
http://www.globalresearch.ca/potential-health-hazards-of-genetically-engineered-foods/8148
Damn! I thought Monsanto was self-explanatory or I would have put in a link. Sorry, Raven!
Wow, wow, wow. You just described life in our home in 2007. Thank you for sharing your story with such courage and transparency and for showing there is always choice and another way. You so inspire me. You are one powerful momma and Spencer, a beautiful soul with a big, big job.
Love, peace and gratitude to you both.
Diane
Thank you Diane!!
Thank you for sharing your birth story. It touched me and opened my eyes a little more.
Thank you Dina!
My son was very similar. Birth at 37, induced post-due-date, C-section, formula at 6 months and all the vaccines. No immediate reactions, just started fading away after his MMR at 12 mo, 1 day old. By 15 mo, had lost all language, no longer sleeping at night, temper tantrums and more. Pediatrician said all was “normal”. Took us several years before we clued in to food and toxins, but once we did, there was no stopping me! Today, my son at 15 is nearly indistiguishable from his NT peers. He stills deals with mito dysfunction and moderate asthma, but we are working on those and making lab proved progress in functioning. Have recently discovered methylation and we are working on that too.
Laura that is awesome! I think it’s really important for people to realize that recovery can (and does) happen for kids who are older. Early Intervention is important but there’s no magical ‘window’ of opportunity for some people. It’s never too late to start improving one’s expression of life!!