There are so many books out now talking about basically the same thing, healing kids from autism and how that label is totally incorrect for these kids! The label, in fact, is what scares most people off from investing this information (and keeps mainstream medicine from doing anything about it either). It did for us! This is all about the the mind-body/brain-gut connection. Many people have issues with their guts (no surprise considering the typical American diet!) but for small children these issues manifest in developmental delays and extreme behaviors. Their systems are not fully developed and can be overloaded much easier than ours. We received a label of apraxia, hypotonia, and sensory. We were satisfied enough not to hear autism that we went full throttle down the wrong path, treating all the symptoms and not the cause. Even if you're only dealing with sensory and some other quirks, I believe this information can help you. We were in therapy every day of the week for my son's challenges. In 7 short months on this wild goose chase, I spent thousands and thousands of dollars! These are all issues of the past now! My son's sensory challenges have vanished. His muscles are firming up so the low-tone is becoming a thing of the past. And, everyone keeps commenting on how well he is talking!
We only went to experts deemed to be the VERY BEST by multiple sources. When I add it all up, we've seen 7 Speech Therapists, 3 Occupational Therapists, 2 Developmental Pediatricians, 2 Pediatricians, 1 General Practitioner, 1 Osteopath, 1 Pediatric Neurologist, 2 Psychologists, 1 Audiologist, 1 Nutritionist, 1 Ophthalmologist, 1 Naturopathic Doctor, 1 Ear-Nose-Throat Doctor, and a Craniosacral Therapist in our search to find out what was going on with our son. I do not think these therapists and doctors were trying to take our money. I think they sincerely believed in what they were doing and honestly all that therapy wasn't hurting my son (just our pocketbook and our precious free time!). There are so, so many kids coming up with these challenges that they have PLENTY of work, as you quickly learn when you end up on waitlist after waitlist. I do believe, though, that most Dev Peds are not up on this stuff and Psychologists haven't a clue about it either (it would mean admitting they've been wrong for a few decades -- since bizarre behavior and speech issues are just symptoms and these kids have an immune dysfunction and dysregulartory state!).
Here are a few of the best books on how to heal. You only need to read a couple to see the similar messages they all have:
There are many more books, websites, and local support groups but these resources above should give you enough to know what actions to take.
Our DAN! doctors have us on a simple (over the counter) protocol right now. It is making a HUGE difference. We may end up doing more invasive treatments but the tests will tell us if that is deemed necessary. I would have paid any amount of money to get where we are and the truth is it only cost me a few hundred dollars.
Please read the books, find a reputable DAN! doctor, and meet them to discuss your child. Don't leave anything out of the history you share. It is all relevant, even if you don't realize it yet. This can all be accomplished in a couple weeks time if you are motivated enough.
For some medical professionals and parents this is controversial but this has been our truth and it must be shared.
Many children with autism have leaky guts (yeast has eaten holes in the intestines), dysregulated immune systems, inflammation, food allergies, eczema, dark circles under eyes (I know now that these are allergic shiners and not just because he's over-tired!), constipation, fungal overgrowth, and viral, thyroid, and cholesterol issues. The science is telling us that for many kids this is an autoimmune disease and manifests behaviourally as autism. When a child is in pain they cannot learn and they’re developmentally affected to varying degrees.
People that know our son may be surprised to learn that he has exhibited many autism like behaviours at times in his young life: Extreme Difficulty Sleeping, Spaciness/Brain fog, Super High Pain Tolerance, Gravitational Insecurity, Sensory Processing Disorder, Severe Expressive Language Deficit (apraxia), Low Muscle Tone, Mouth Stuffing/Swallowing Food Whole/Gagging, Eating More Than Seems Normal, Obsessive/Compulsive, No Self Reliance/Initiative, Not Inquisitive, Eye Contact Avoidance, Little Self Preservation Instinct, Difficulty With Transitions, Serious and Hard to Smile or Laugh, Uncoordinated
ALL OF THESE BEHAVIORS ARE INCLUDED IN THE DESCRIPTION FOR AUTISM! And there are more and he had more! If someone had showed me these all together I would have had no doubt about the diagnosis. But you want to believe the best in your child and making excuses for the behaviours can come too easily. I thought because he wasn’t emotionally disconnected that it couldn’t be autism (and that was actually right -- see "The Myth of Autism" listed in next post!).
The real catch is/was that the behaviors didn’t *usually* happen all at once. They ebbed and flowed for him and he *usually* could be great in new and stimulating environments (school/therapy offices) and then completely fall apart at home. There were plenty of glimpses of a sweet little boy but then he would switch out. Except near the “end” in Sept and Oct of 2010 when he could not hold it together anymore and he was literally screaming for help but he had no words to use. We were living a parent's worst nightmare; not knowing what is wrong and therefore totally unable to help your child. That's when we insisted on seeing more experts. The depressing reality is everyone that is a specialist and has any kind of good reputation has a waitlist that is months long!
I converted him to a GF/CF diet. I’m not sure why I did that, mom instinct I guess. The blood tests said the diet shouldn’t matter but after being on the diet for a few weeks, he seemed to become a better regulated boy.
But he still had massive meltdowns and unexplained screaming and night wakings. The improvements he did have were attributed to the fact that he was maturing, in intensive speech therapy for apraxia and occupational therapy for hypotonia and sensory. THAT WAS ALL WRONG! He was getting better because the gluten and casein were not leaking out of his compromised gut, entering his bloodstream as peptides and poisoning his brain!
In January, we got in to see "the experts". We stopped the GF/CF diet after we were told to do so by our very well respected developmental pediatrician, Trenna Sutcliffe ("this diet doesn't matter for you guys, go have pizza!"). This was after our very well respected pediatric psychiatrist said he didn't have autism. For three weeks, we watched Jack slowly deteriorate. While on vacation in Hawaii, where we felt like prisoners in our hotel room because of Jack’s behaviour, we decided we needed to get back on the diet, and fast!
This led me to question what the hell was going on. Why did the diet matter so much to him? What was the connection between the relatively healthy food he was eating and his extreme behavior. He was totally sensory focused (everything bothered him) and had an overall unhappy mood and sickly looking appearance. I found the book, Gut and Psychology Syndrome. Per the book, I bought digestive enzymes and probiotics. I started making just about all our food from scratch and totally organic (as opposed to mostly) and I added these new supplements to his food. He changed within 2 days. Then I added DMG, he changed within 24 hours. The speech therapist noticed it, the teachers noticed it, and his occupational therapist was amazed. Then I found the book, Healing and Preventing Autism. It led me to the Defeat Autism Now! protocol. OMG! Without realizing it I was doing what is called Biomedical Interventions for Autism! It was only about 10% of their protocol and he was responding like MAGIC! He was doing things he’d never done before and every day there were dozens of new little changes to be delighted about. He started finishing my sentences using words I’d never heard him say before. He's become so much more playful! He’s showing initiative where it had completely been lacking. He’s interested in toys and places he hasn’t noticed before! There are no sensory issues! He wants to be barefoot! He's better coordinated! There are about fifty different things he’s doing and all are age appropriate. Things I have longed to see him do! It's like he was lost and now I'm getting to know him again.
What is not fully known AND SHOULD BE SCREAMED FROM EVERY ROOFTOP is that *many* children with what is thought to be autism can recover and lose their diagnosis (THANK YOU Jenny McCarthy, Generation Rescue, Defeat Austim Now!, Specific Carbohydrate Diet, and Talk About Curing Autism for your messages of hope). This is a complex neuro-immune, then complex viral dysfunctional state and is NOT a psychological disorder at all. IT IS A CRIME that mainstream medicine has not caught up and that we had to find this out ourselves. The people we trusted most do not know about or tell parents about this. Since they specialize in kids with special needs, it is on them to learn the latest findings and be abreast of the amazing healing that is taking place. There are thousands of moms just like me who have gone through this. Most figured it out on their own. Many more don't even know. I feel as though I am the luckiest woman alive because Jack is one of those fortunate kids that responds to these interventions.
We are only on week 3 of our journey into biomedical inventions. We’ve started with the ones that have proven most effective with the majority of kids. We have found great DAN! professionals to work with and we’re testing, testing, testing everything so we can find out the specific areas we can focus in on healing first.
I won’t go into how much it hurts to realize that Jack could have been helped sooner. Much of this DID NOT NEED TO HAPPEN. I’m going to try to stay focused on the positive from here on. Jack is very ill but we are on the road to recovery and WE'RE GETTING JACK BACK!
Important Addendum - March 30th
For the sake of simplicity I didn't include every detail in telling our story. I realize now that our story might help others so I want to provide more information. And to answer some questions. No, I do not believe Jack has apraxia. He has, what I would term now, a speech delay. As you will learn if you go down this path and read the books, his challenges can be cured and he may not have to be on a special diet for the rest of his life. The prognosis is very, very good.
DISCLAIMER: I am not a doctor so please do not take this as medical advice. You know your child best. What worked for our child will not work for every child. The specific things we are doing to address his needs are not the same as the specific things you might need to do for your child. Beyond diet changes, please don't start treating on your own. I want you to have the best possibility for success, which I believe only someone trained in these things can give.
We had a roundabout way of ending up where we did. Here's a shortcut:
This biomedical concept of recovery from diets, vitamin supplements, and specific medical treatments (following tests for viruses/fungi/allergies/etc) has been well documented now. There are too many kids responding to this for it to be denied. The word is getting out. There are literally dozens and dozens of books written on it. It's controversial and political because solving these problems leads to questions; questions of the status quo (toxins, vaccines, etc). This argument is what is keeping this knowledge from going mainstream. An award winning series Vanguard on Current TV is working on a segment on this. Another mom's similar story will be on News Hour from April 18-26th. It's only a matter of time because there is a growing army of parents and kids whose lives have been forever changed by it. After what we have experienced it's hard not to sound a tad militant but I'll leave those questions for others so as not to detract from what we can do now to heal.
After our experience, I personally will not take advice for Jack from anyone that does not know of the DAN! protocol. Our main DAN! doctor recommends everyone read Children with Starving Brains to learn what this is all about. So I would encourage you to start there.
A word on diets...
First I would tell everyone to go as organic and healthy as possible. Try to minimize processed sugars, food colorings, preservatives, and 'boxed' products. Track everything your child eats, behavior, and stools so you can find a pattern and/or show it to a professional. Jack also had chronic soft stools and eczema. These are two important and obvious signs that something was not right in his gut and/or there was an allergy. Back in Oct we also started supplementation with fish oils and an organic protein powder, which I think were also crucial in addressing some of Jack's health deficiencies. And as it happens these are part of the DAN! protocol too.
The next most important step would be a trial of Gluten Free & Casein Free. You'll need to go Casein Free for 3 weeks and Gluten Free for 3 months to determine if these make a different. It is actually not that difficult because of all the substitute products around. You shouldn't just try one and not the other as sometimes the body use the other as a substitute with the same terrible results (inflammation, leaking peptides into bloodstream, brain fog, etc.) There is an initial period of regression (called 'die-off') then usually noticeable improvements. However, a GF/CF diet is just a beginning for most. According to parent's reports to DAN!, the majority are seeing the best results with the Specific Carbohydrate Diet. Then the GAPS diet is even more restrictive but carries all the same benefits of the SCD diet and perhaps people can heal faster. The trouble with GAPS is that most children would not want to eat only soups for a week or more, which is what the first stage of GAPS requires. Any serious diet change could leave kids lacking in certain nutrients (like calcium on GF/CF) so supplements are needed. Again, best to find a person like a doctor and/or a nutritionist knowledgeable about this stuff to give you the advice on what to test and then how to address.
I wish you all success and happiness in your journey.
Going forward, I will use this blog to share the news and research that will continue to grow on this topic as the medical community and the mainstream news media plays catch up.