Ep. 5: Let Thy Food be Thy Medicine? Does it Make a Difference?

Parenting Severe Autism mom & host Shannon Chamberlin shares some experiences, disappointments, and positive outcomes she and her family have experienced while experimenting with healthy food options for her son's severe autism.  

Transcript

Shannon Chamberlin: 1:31

Hello and welcome to The Parenting severe autism podcast. I am your host Shannon Chamberlin, I'm so happy that you're here with me today. Have you ever felt like your child has an unhealthy relationship with food, or that sometimes when your child eats certain foods, their behaviors seem to become worse or more evident? Have you ever noticed when you eat certain foods that you just - maybe don't they don't agree with you at all, or they make you feel worse, or better, depending on the food or the time of day that you eat that food? Do you remember that show Supersize Me where the guy ate McDonald's for 30 days, and he ended up revealing that the food was addictive for him and made him more negative and more angry and more slovenly? Does it make sense that we may be able to use foods to make ourselves and our children feel better or worse? It does to me! W hen I first met my son, as I've mentioned before, he was six when I met him and had already been diagnosed for just around three years. At that time, the first thing I did was go back to my house and start researching autism because I had no idea what this was or how to deal with it or how to interact with this child. And I knew that I really liked his dad, and I was going to be spending a lot of time with both of them. So I wanted to gain an understanding of where this kid was in the world and how he feels and how I can help him. I always enjoyed babysitting other people's kids. I always prided myself in keeping the perspective of a child and never forgetting what it's like to be a kid. So I had that down pat. But as far as dealing with any sort of special needs, I didn't have a lot of experience, especially with autism. So the first thing I did was dive into some internet research, of course, and tried to learn about autism. And the first several papers that were published that I read online mentioned that autism is greatly affected by something called gluten, and another thing called casein. Well, what the heck is that? So I looked into what gluten and casein are and I learned that gluten is something that comes from wheat, and that casein is something that comes from milk. And supposedly, autism does not get along with gluten or casein. So all of these articles were saying cut gluten out of your diet and cut dairy out of your diet. Well, my spouse and I actually met through work - we were selling cookware, the finest cookware in the world, and in order to sell that cookware, we actually were teaching fast, healthy cooking. We have helped hundreds of clients just by teaching them this way of cooking and teaching them about the cookware. They've been able to get off of their medicines for pre-diabetes and blood pressure and cholesterol, so we definitely already understood the benefits of a

Unknown: 4:56

So I ran this information by my spouse, "What do you think about this gluten and casein thing?" And we didn't know what to think of it, but you remember, this was 15 years ago, and there was no real gluten-free anything at that time. But we decided to just take a look at our son's daily intake of these ingredients. And we noticed that when we would go to work, we would leave our son with his grandparents, and when we would come home from work, we would be gone about three or four hours a night to do our job, and we worked together so it wasn't a long time, but we would come home and find that our son had been sitting in front of the computer for the entire time we were gone and he was either in the middle of or had already finished eating a full loaf of Pepperidge Farms cinnamon raisin bread. And this was every single time and we worked at least five nights a week. So every night this child was eating a full loaf and they're smaller loaves, you know, the Pepperidge farms specialty breads. They're smaller, but it's still a full loaf of cinnamon raisin bread. We also noticed that every time we left him with his grandparents, he would drink at least two cans of Mountain Dew, or two bottles of Mountain Dew. So that was his diet, mostly. When we were not there, he would eat cinnamon raisin bread and Mountain Dew. That's what he existed on. If it wasn't that, we noticed that the grandparents would feed him McDonald's every day. If we went out to work during the day, his grandparents would take him to McDonald's or they would go to McDonald's and bring McDonald's home to him. And that was the only food he knew. He got really into cheeseburgers and chicken nuggets from McDonald's, as well as the bread and the Mountain Dew. And that was his diet. So now that we had assessed that, we looked further into why is gluten bad, just we'll just concentrate on gluten right now, and we just left the casein out of it. And it turns out that all of the science points to a fact that gluten is not well digested by those with autism. And, mind you, this was 15 years ago. It's- there's a lot more people now that we know of that have problems digesting gluten. But at this time, in the purpose of researching autism alone, gluten was not easily digested by people who have autism. In fact, it's noted that gluten has the same effect on a person with autism, as heroin has on any other person. It creates a need to have more it creates an addiction, it creates an unhealthy focus on getting more of this, which is now a drug. So healthy diet. once we realize that we began to try to taper it down. There was no way at that point in our lives to go what you know now as gluten free, that wasn't an option. We all ate pasta, we ate bread, there were really no gluten free options in the store. It hadn't even become a thing yet. But we knew that we wanted to reduce his intake of gluten at least, to start. And also we were requesting that they stop doing so much McDonald's and stop doing so much Mountain Dew. This was a very hard battle, we did not win. We actually had to move, once my spouse got a promotion within our company, we were able to move away. We moved about three hours away from the family, and then we started our healthy diet for our son. If you're in a situation where your family is not supportive of something that you're doing, such as a dietary change, you can try a couple of different things. We tried some things, none of them worked. But one of the main things I did was first, we sat down and had a talk with the grandparents and explained everything I just explained to you. When he eats so much bread it reacts in his brain like heroin, and it creates an addiction and a need and an unhealthy desire to hunt out this bread to give him this effect. And the effect is a strange kind of high that he gets because it's basically poison in his body. Anything that your body cannot digest or break down or make use of is basically a poison and it creates a strange feeling such as if you were to eat what you might know as magic mushrooms. Those are a little bit of a poison to you. And yes, they're used medicinally but when someone has that altered state and they start "tripping", it's because their body can't metabolize what has been fed to it. So that's basically what was happening when he ate so much bread, his body couldn't break it down, couldn't absorb, it couldn't make use of it. And it was reacting as a poison in his body and causing some strange feelings in his brain and everywhere else through his nervous system. So, we tried to explain that to the grandparents. We also explained that the ungodly amount of sugar in a can of Mountain Dew is not good for his six year old, tiny little body, especially having neurological problems with autism. And we asked them to please stop doing that. And that didn't work. And then I wrote a big note, and it said, "If you love me, don't feed me" this, because of this, and that because of that, you know, and we put that on the refrigerator. And they had no regard for that either, so there was no support, trying to change some things for our son and see if we could make him feel better. We didn't really have a way to measure whether he was feeling good or bad, because he had always had this specific diet. But we did know that when we tried to take him places like the zoo and do something that he should enjoy, it was really not fun for any of us. And the one thing that was always there was Once we were established, and we had our own place, we did not go autism and gluten. So once we moved three hours away from the family, we took control of the diet, and we just cut way down on his gluten intake, and we cut even further down on his sugar intake. And, we got a hotel to search for a place to live, and we stopped in a gas station to get a real estate listing book, and a newspaper with classifieds. And the first thing our seven, almost eight year old son did at that time was shoplift, the biggest box of Pop Tarts he could find. So we had to return that. And then, because he couldn't have that he began throwing a real - the biggest physical, violent fit I had ever seen by that time. And he was just kicking my back of my seat and just really trying to kick through the seat and just, you know, kick right through my ribs. But I didn't know if that was the autism or just being a kid, or if it was the addiction to the gluten and sugar that he was trying to feed and we were not allowing it. out to eat. We didn't go out for ice cream or anything like that for about a year. And then when we finally did, we took a family walk across the street basically, there was this little mini golf and ice cream shop close to our house and we all walked there and we let our son choose his soft drink. There was a little cooler there, he could open up the doors and choose whatever he wanted. And there was water and Sprite and Mellow Yellow, and Mountain Dew, and Dr Pepper and just everything. And we were very nervous. We didn't know what we were going to do, because we know if he chooses something that he wants, and we don't want him to have it, that's going to be a nightmare in public, so... But we wanted to see what he would do with that freedom. He had not had Mountain Dew in just over a year. And there it was in that cooler, and he went over there, and he contemplated it for about a minute. And we were gritting our teeth and biting our nails, and he opened the door and chose Sprite, and that was amazing. We were shocked and so happy that he wanted to have Sprite and definitely allowed him to have that Sprite because it's infinitely better than Mountain Dew anyway, so we were very happy with that. That has been his go to soft drink ever since. He does drink a lot of water. But when we allow him to have a soft drink, he chooses Sprite, sometimes seven up but never Mountain Dew. And we think that that might be because he had enough time away from Mountain Dew, to realize that he didn't like the way it made him feel. And he ended up saying Mountain Dew is bad for Jacob at some point in his life when he was able to get all those words together. And that was pretty cool. And now he'll say that when he feels that something does not make him feel good. About four years later, we finally began to go gluten-free and I can't say that we really noticed a difference for him. I noticed a difference for me because my stomach had been swollen for years. Now, I have an autoimmune - I have two autoimmune conditions. Which brings me to another point real quick-what I know now that I didn't know then when I first started researching autism, for my family is that they consider autism to be an auto immune disease. I didn't realize that. Now, I have two autoimmune diseases and I live holistically I try to create balance in my body by eating the right foods, eliminating the foods that are not good for me, living a balanced lifestyle, which is very difficult because of the amount of stress we have dealing with severe autism. But I am only on one prescription medication and it's a natural thyroid pill. So there's no chemicals in it, and I'm very proud of that. We balance our our mood and everything just with food and lifestyle modifications. So I know from personal experience that if you have an autoimmune disease, that is going to start-your healing starts with food modifications, dietary changes, and you've probably heard by now that it's estimated that 70 to 85% of your immune system is in your gut, right? So let's say it's just 70. 70% of our immune system is in our gut, and autism is considered an auto immune disease. So then why wouldn't we start with dietary changes to see if we can help our kids with their auto immune disease? There is also something you might have heard of called the gut-brain connection. So autism affects the brain because our kids are not neurotypical, right? So this all starts to tie together, doesn't it? And when I learned about that autism being considered an auto immune disease, and already knowing that auto immunity needs to be addressed, starting with the gut, instead of masked by medications, you don't mask the symptoms, you address the cause. And the cause is probably starting in your gut. Well, that all makes sense. So I started treating it more like an autoimmune disease. But before I learned all of that, we were still going gluten-free. And it took about two and a half years to completely gluten-free our diet, it's a very long process, you can't do it all at once. And you have to be able to find things that you can substitute in your child's life and in your life so that it's not hard for you. They make great pasta now, and they even make desserts and you know, bread and all kinds of stuff that's really good compared to when all of this first started for us - the products were awful. And you would have had to make it yourself and who has time for that, right? So we do eat very clean, we don't eat processed foods, we don't go out to eat or anything like that. But we've noticed that when, every once in a while, we will treat our son to a box of gluten-free macaroni and cheese. And that's about as processed as it gets in our household. And my spouse would make this for him and use, I think it was a tablespoon or two tablespoons of milk, which is what the recipe instructions on the box called for. And every time that our son would eat this mac and cheese, he would cry uncontrollably afterwards for three days, every single time. And I asked my spouse, what do you make? How are you making it? And he said, it's just a little bit of milk. And I said it's got to be the milk because I make homemade mac and cheese and I don't use the milk, and you know, instead I use water and make the cheese sauce and he doesn't cry. So let's try not using milk. And so now he uses water when he makes that mac and cheese and the child does not break down and cry, not even for an hour, much less three days. Now, these are not experiments that you can use during a full moon, you've probably noticed that your child, definitely my child and lots of other kids I know with severe autism, about three days before and three days after a full moon, is absolute crazy time. And there's no way to gauge any other things because the moon affects my child severely. And I can't run any little food experiments or anything like that during that time. The other time I can't rely on any results from my experiments is during a storm front moving in. Not necessarily an active storm, but the pressure building up to the storm that also affects him greatly, and he's a basket case- another - it's just like he had some milk. It's just very emotional for him and he's very unsettled. So that's also not a great time to experiment with food, but any other time, you know, it might be wise to see how your child reacts. You just remove something for a week or two and then reintroduce it perhaps and see if there's a change. The other thing that really helped when we're looking at food as medicine was when we began to explore the blood type diet. So I think there's a book out there called Eat Right For Your Blood Type, we did not read the book or anything like that - we just happened to run into a practitioner through doing our business with the healthy cooking. We ran into a lady who does testing and advising for the blood type diet, so we had her take a drop of blood from each of us, and look into it and advise us on what to do. And it turns out that our son has a blood type A, I am a blood type B+, and my spouse is a blood type O. Now O, I think he's O positive, and the positive, negative and, and regular, are all a little bit different. But it basically boiled down to with my spouse being a blood type O, he can basically eat anything, and metabolize anything. He makes all of the right digestive enzymes for anything that you could feed him but his body and digestibility do prefer meats that are medium rare, instead of well done. And that's about it. Really, he can eat anything. Me, with a blood type B positive, turns out, I cannot digest chicken. So now I no longer eat chicken. There's also a lot of different fish and other poultry type things that I cannot digest. I'm basically stuck with beef and pork. And I think I can eat venison without a problem. And then my son he was, you know, he's been the healthiest diet of all of us, because he can't tell us how he's feeling, and we just wanted to remove all doubt and remove all possibilities for causing more damage to him by feeding him food that's not good for anybody, you know, so why would I feed it to him if he can't even tell me when it makes him feel bad? So he had the cleanest diet before we started this blood type thing. Then we found out that with his type A blood, he's naturally inclined to be sickly, and he's naturally inclined to not live very long if his nutritional needs are not met, and he doesn't make the right digestive enzymes for so many foods. We were feeding him oranges and bananas a lot because he appeared to really enjoy them. Now remember the story about the gluten in this case, he appeared to really enjoy them. He also appeared to really enjoy venison and pork and beef. He would make really excited grunting sounds like he was getting hair on his chest when he would eat venison. And he would just always get excited and just make yummy sounds all the time when he would eat pork, beef and venison, and mainly venison was the most grunting he ever did. And we thought, oh go, you know, that's great. He's got some protein that he really loves, and it's good for him. Turns out, he does not make the digestive enzymes to break down oranges or bananas, or venison or beef or pork. So every time that his sounds, facial expressions and reactions were showing us that he loved what he was eating, it was actually creating the opposite effect within his body and creating so much discomfort for him that it caused a reaction, it wasn't the right reaction. And as we know, our kids don't always provide the right reaction to a circumstance, right? So we felt awful to learn that we had been feeding this kid everything that he can't eat, but what he can digest really well is turkey, chicken and fish and basically, his diet - He can't eat any sweet peppers, hot peppers, basically anything that's not green or white, he can't eat. And I know pork is the other white meat, but that doesn't count in this case. But he can eat rice, green vegetables, and like I said chicken, turkey or fish. So he has a very bland-looking plate but it has done so good for him. And the problems that we see, that we used to see around food no longer exist. The other thing that I think - now this whole time we have worked our tails off all these years to provide him a diet that does not cause him pain that gives him all the fuel and vitamins and minerals and everything that we teach people in our healthy cooking shows that we used to do. We've worked so hard to give him all of this and I always thought with all these behaviors and this violence and the not sleeping and losing his skills at 14 years old. And all of the negative experiences that we've had, you know, just every you, you know, all the things in public and at things that are supposed to be fun and things he's supposed to enjoy and things he used to love and all of that stuff. My experience was not any different than your experience, as far as I can tell. I thought, what the hell am I doing this for? Why am I working so hard to give this kid all these specialty foods, and he's no different than anyone else's kid who eats McDonald's and red dye and sugar and all this crap? He might be a little better off, but generally, his autism is the same as everyone else's severe autism. Everyone, all the kids are different, but you know, I just was down on myself like, man, it's not making a difference. What is the point? Why do I get so mad when people let him drink beer? Or give him a loaf of bread in my absence? Why? Why do I try so hard? And then I started meeting other parents who have kids with severe autism. And I started to realize that all of their kids with severe autism also have severe other stuff going on. They may have extra diseases. There's something out there called PANDAS, there's celiac, there's Crohn's, there's all kinds of stuff. There's epileptic seizures going on. There's all kinds of things attached and associated with severe autism in these other kids. And so far, knock on wood, our child has only severe autism. And I have nothing else to contribute that to accept the lifestyle modifications that we began making 13 years ago. We've continued to make modifications all this time, and it's been very difficult, and it seemed worthless. But I now see that he has not been suffering so badly in his life, as many children are suffering. Thank God, our son is not suffering from any of that, and I really think there's something to this healthy living aspect of everything that we're doing. I mean, I'm in my mid 40s, I don't wake up and have to take Aleve, or any other kind of, you know, pain medicine. I have, I don't qualify for medical cannabis, thank God, I have nothing going on, I have no pain. I'm not on any Prozac or anything like that, you know, so Don't forget to visit my website at PSA dot Buzz sprout.com I'm really proud of that. My spouse is the same way, he's - he's had a lot of broken bones in his life, so he does That's PSA, for parenting severe autism.buzzsprout.com. You can experience a little bit of pain. But other than that, you know, we're not on any pharmaceuticals, we're not on go there for my show notes. I haven't mentioned any products any over the counter drugs. And it's really, I believe, because we all eat for our blood types, and live a holistic lifestyle, in this episode, but if you're interested in any of the and we don't eat out, we don't eat garbage, we don't eat anything processed, you know, we have gone so far as to make sure products that we do recommend for this holistic type of our child doesn't even eat the red dye and the yellow dye and lifestyle and things that can help get through the summer and the blue dye all those F D and C food coloring dyes that are terrible for you, he doesn't get any of that. If his food has make everybody feel a little bit better about their situation, color in it, it's because of fruit juice or something like that. And another thing with Type A is that he only can have feel free to check my show notes from other shows, I've got one to two pieces of fruit per day. And that's maximum, he actually cannot eat more fruit than that, because somehow it product links and descriptions in there. And if you have any tells his body to turn off the other digestive enzymes that it would normally make to digest the regular foods. So too much questions, feel free to email me at contact dot parenting severe fruit is actually a thing for him. So hopefully that helps you if you have the type A, B or O You know, you can look into that autism@gmail.com. I have created a Facebook page recently because and just kind of start seeing if you can cut out a few of the foods and see if there's a difference. Usually it's two to I'm not allowed to post my podcast links in the group that three weeks, you know, and then you have to introduce the food I'm in. I'm in a private support group on Facebook for parents of back and like eat it all day long to see if you have some kind of problem with it. But even something so small, like a children with severe autism and learning disabilities. And it's banana can really throw off your whole day if you're type A blood type. So I'm so grateful for my background in healthy cooking. a great group, lots of great moms and dads and caregivers in And for my spouse being open minded and wanting to experiment with natural methods of managing this autism. We didn't always there. But there's no way for me to advertise this podcast. And I know it was severe. We just knew it was autism. I think that our lifestyle modifications have really made a positive impact on really think that some of the information, most of the our child's life. And again, if you're anything like me, you've information that I present is helpful to people in our run out of time for this episode. I'm so glad that you stopped by. positions. So I do have a Facebook page, but I'm really not that great at managing social media and stuff. But you are welcome to check it out. It's just called parenting severe autism podcast on Facebook and keep your eyes out for my next episode. I'll release that next week, I'm going to talk about some of the creative ways that we've come up with to make sure that our son is comfortable with our lifestyle modifications that I've talked about when we're experiencing resistance to change and Oh, my child doesn't want to eat anything, all he'll eat is this or that and that's it, and I'm so frustrated - We were there too. And I'm just going to share some of the techniques and the little tricks that we came up with that worked magic and that we no longer have to use because we were able to convince our son through these techniques that the food we're serving you is pretty darn good. Thanks again for listening. If you need any recipes or suggestions, feel free to email me and I'll talk to you in the next episode. You hang in there. You're a superhero