Ep. 6: Making Food Transitions

Parenting Severe Autism mom & podcast host Shannon Chamberlin shares some creative ways she has come up with to help her child transition to eating real/better foods, as well as some ideas on communicating her child's needs to educators, therapists, and family members.

Transcript

Shannon Chamberlin: 0:18

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. In this episode, I'm going to focus on just giving you some ideas; if you're interested in changing your child's diet from less healthy to more healthy, as we talked about in the last episode, you might be having some trouble figuring out how you're going to get your kid to go along with that. And it is very difficult. Our children love routine, and they easily form attachments to things like cheeseburgers and chicken nuggets and french fries from McDonald's Mountain Dew, certain kinds of crackers, mac and cheese, whatever it is, you have probably found that your child prefers only to eat a few foods and none of them really deliver any nutrition, right? What the heck do you do? Well, please remember, I'm just a mom. I'm not a medical or psychiatric professional. And I have come up with a few creative ways that I'd like to share with you to get our child to go along with the changes in the diet. Before I go any further I don't want to forget to invite you to support the show. If you want to support my show, you can click the support show link on my Buzzsprout page or wherever you find my podcasts there should be a support the show link. Once you click on that you'll be invited to buy me a coffee and you can buy me as many coffees as you like a portion of the proceeds that I earn from the buy me a coffee will go towards helping a family in need that is dealing with parenting severe autism, a lot of us are on long waiting lists. We're not receiving the help that we need. And a lot of these kids and adults with severe autism need specific safety and sensory items. If you are the family in need that I'm talking about, please send me an email at contact dot parenting severe autism@gmail.com. So last episode, I talked about healthy food and the changes that we've seen and benefits that I think we have reaped from a healthy diet with our child. But how do you get that to fly when your child is used to eating specific things and won't have anything to do with the rest of it? Well, one thing that I came up with I had I mentioned in my last episode that my son really likes to spend a lot of time in the kitchen with me. So you would think that he would just be ready to eat right? He sees me making the food we have a good time while I'm preparing the food. But His thing was he could tell when it was time to serve the food. And as soon as my back was turned to get a plate or a utensil, the boy was running up to his room and would not come out he would not come down to the table to eat the delicious food that I cooked for him. So that was disheartening. We got him away from the bad influences of immediate family. He had no babysitters, no caregivers, it was just me and his dad, his dad was out working in the evening and I was at home making the child's life comfortable and healthy. And every single meal this child would run away from the table up to his room and not come to the table. And I was so frustrated. His dad said well, you know if he gets hungry enough he'll eat was it? Well, that's a that's a good outlook. I mean, yeah, I'm sure hopefully, you know, hopefully he has the sense to eat and know that he's hungry. He doesn't show that he's got a lot of sense. Most of the time he'll wear a fleece hoodie tied up around his face and sit in the sun at noon in August. But you know, yeah, maybe he'll eat when he's hungry. I don't know. But I wasn't willing to wait that long because I just didn't want anything bad to happen and him to be malnourished or something like that. And I didn't want him to go to school and just eat whatever he could get his hands on. So I decided to get creative. The first thing I did, we had a snow pants conveniently hanging in the foyer. So one day I hadn't put his snow pants on. After he had run away from the kitchen when it was serving time. I just had him come down and put his snow pants on didn't tell him why. And then I had him sit down and I was just trying to create a large size booster seat or highchair for this child. When you go in a restaurant and you have a booster seat. There's a little seat belt that keeps the kid from sliding out of it and when they're babies there's a highchair and I believe there's a seat belt but there's that tray that kind of locks them in as well and you can count on your child being able to sit there as long as they need and enjoy their food and stay safe so I needed something like that. So I had him step into the snow pants and I had him sit in the chair at the dinner table I looped the little straps of the top of the snow pants through the spin Little on the back of the chair and then secured the straps into the little security latch on the chest plate of the snowpants, and kind of bungeed him to the chair so that he couldn't get up and run away. It was a good seat belt, it was for his safety and for him to eat, which is also a safety requirement, I think, to eat good food. So that did work. Another thing I noticed, while trying to figure all of this out was that when I would when anyone would go and open the back patio door, it was a sliding door, he somehow in his room could tell that someone had done that. And when it would open and close for the second time, he would come running down and look at us expectantly, as if we went out and got something and then I realized he thought we got fast food, he must have asked for McDonald's or something and looking around to see what was in our hands. And we were just outside just hanging out. But he thought somebody must have gone and got him McDonald's. So I decided to turn that around and use that to our advantage. I purchased the larger sized lunch bags, the brown paper bags for large lunches, I got some sandwich wrappers, you know, like parchment paper type stuff to mimic the way that your cheeseburger is wrapped when you go to a fast food place. And I even made some into little envelopes for you know fries. But I would make sweet potato fries or something like that I would use a little container. If I made him tomato soup, I would use a little container that resembled something you would get at a restaurant or fast food place, I went to great lengths, no matter what I cooked, I was able to pretend that it was not from me it was from a restaurant or somewhere outside of the house. So I got I didn't want to keep strapping him to the chair all the time. That was just I wanted to see if it would work. And it did. But that's not a long term solution. My long term solution at that time was when dinner was almost done, he would run upstairs, I would wait a little while and go over to the patio door and open and close it. And then I would very quietly hack all of his food that I made him into all this fake to go stuff. And then I would go back over to the patio door open and close it and then walk into the kitchen. And then by the time he got downstairs, he could see me reaching into a bag and pulling out food. And that was the only way to get him interested enough to sit down at the table. It didn't matter at that time what I served him as long as he thought it came from somewhere else. And that was how I got through a couple of years. In the beginning. I did that for a very long time because he just wouldn't eat unless he thought it was fast food once I decided that he was just going to have to get over that I started being able to get him more interested in the cooking process. And I basically was trying to teach him a sight and smell appreciation. So I would begin cooking the food, get it halfway cooked or whatever and have him come over in a secretive voice, I would say hey, come check this out. And he would instantly be curious and come tiptoe over to where I was. And I would have him stand back a safe distance. So no steam got on him or anything like that. And I would open the lid. And we always kept the food pyramid and then the MyPlate chart that he would bring home from school, we kept that in the kitchen. We don't believe in those at all. We don't follow that. But he liked the colors. And he liked the idea of all the food being on one plate because they had you know, bread and eggs and milk and vegetables and meat and stuff like that just whatever was on there. He enjoyed looking at it. And it meant something to him. So I would open up the lid of the cookware and say look at that at first he was like, yeah, so But so then I would point to the food pyramid or the MyPlate chart and say, see what color is that what color and he would start to make a connection. Oh, there's red in the pan and there's red on the color wheel or the food pyramid. Oh, there's yellow. And then there's purple. And so he started he was having fun because he was naming colors. He was having fun because he was seeing those colors on a piece of paper that talked about food, which he apparently loved. And he was getting excited about being able to eat all the colors on the pyramid or the MyPlate. So whatever works, that's what he liked to do. And that was one of the tricks that I use. The other one was to teach him smell appreciation. So I would cover it back up and kind of let that all build back up under the lid. And I would say no, I would reinforce the whole color thing while I was waiting and just kind of get him excited about looking at that and he would stand in front of the fridge and flap and bounce and make all those little happy noises so I knew that was a good thing. And then I would say Hey, come here and check this out now and he would come over and I would have him stand a safe distance back so again, he didn't get burned by any steam or anything. like that, but I would open it up and start using my hand to force that the vapors of the food over towards his nose. And I would tell him breathe in and make the sniffing motion to try to teach him to do that. And, you know, most of the time, all his life, when we're trying to get him to smell something, he's either holding his breath or blowing out through his nose. So I don't know if that actually worked at that time. But it was just another activity that he was involved in. And he may not have understood what I was trying to get him to do. But he was involved. And I think that was important. And now even to this day, when he's 21, it's more than 10 years later, he'll still come in the kitchen, he'll open lids on his own and just say, "Let me have a look". Or, "let me check it out." He doesn't have a lot of words, these days, he did start losing his words and skills around 14. But he's got a couple of cute ones. So he'll come in when he wants to make sure I'm cooking. He'll say, Hmm, let me check it out. And he'll just take it upon himself to open up the lid of something on the stove and try to identify it and see if it's for him or not. And I think that's pretty cool. And I think it all came from me getting him involved and trying to teach him an appreciation for sights and smells of food. Around that same time between when he was eight and 11, we noticed that he and his dad were having a pretty severe reaction emotionally, when they would eat Doritos, we first noticed it with his dad, his dad does not have autism. But while the kid was in school, we would you know, take a break from our home business and just sit down and have lunch together and enjoy each other's company. And everything was fine before lunch, and mostly during lunch, but towards the tail end of finishing the play. And then for the next hour or so afterwards. My husband why calling my husband we're we've never been able to get married because of this autism. But anyway, my spouse would get really unhappy and just really testy, not want to hear anybody talk, even me. He couldn't stand listening to the TV, he couldn't stand anyone saying anything. He didn't want any input at all. He was just really sour. And he finally said one day, you know, every time I eat these Doritos, I get a bad attitude. I get angry, I don't want to hear you talk. I don't want to listen to anything. And I can't stand to be around you or anybody else. And I think there's something wrong. And so naturally, he stopped eating Doritos. And notice that that doesn't happen to him with any other chips. Well, Doritos have something called brominated vegetable oil, which is pretty unique to the Doritos brand. And it's not good for you. And apparently it manifests in this way for my spouse, we began to pay attention to our son because he has a very unhealthy relationship with food most of the time, you know, at that age, he hasn't really had any problems since we've changed the diet and made a few other changes that I'll talk about another time. But back then he would get to be about the same. Everything was fine before and mostly during the meal. But then towards the tail end of the meal. And then for the next hour or two if he had Doritos, he was a jerk. And we were just like, wow, whatever this brominated vegetable oil is I think that's the culprit. And nobody eats Doritos from here on out. So you might check into that, you know? And just when you think all this is for naught, all these efforts you're making and all this hard work you're doing to try to fool your kid into being healthy and eating good foods for them. Just when you think it's not worth it, someone in your life will decide to feed your child something that does not agree with them, or that is just total BS and is not good for them. Whether it's got excessive sugar, gluten, dairy, or dyes in it something about it will affect your child in a negative way. And you are going to have to deal with the two day to 14 day detox symptoms that your child will experience and this includes severe meltdowns, more self harm, more aggression, whether it's towards inanimate objects or towards you and I encourage you to pay attention when these things happen. Who has been around that's normally not around? Is it possible that they fed your child something that is really not good for them or that the child hasn't had in a long time, you might notice a relation between the increased meltdowns and the ingestion of something not good. It's definitely noticeable for us before our child started eloping destroying the house hurting himself and hurting me and his dad, there was a small window of time where we could leave him with his grandparents periodically just so we could get a day or two away because we've been told by several autism professionals that regular couples need to get away once a year parents of severe autism or any kind of special needs child need to get away every three to six months. So we had been trying to get a little respite here and there and it doesn't work as you know, but we did have a small window there and we were able to go visit some friends and when we came back - he was 17 At this time, we found that the door to our little apartment that we have in the family's house here was unlocked which we locked it when we left. I'm not sure how that happened, but pretty sure our son managed to pop that lock somehow. We found that he had eaten all of my raw honey with his bare hands and rubbed it all over the walls and the banister and our bed, we found that he ate an entire loaf of his dad's texas toast, and he drank his dad's beer. So I don't know how sick this kid might have gotten while we were gone. Thank God, I never did find anything really gross in our living area. But that was how his grandparents took care of him while we were gone. Once we got all that stuff cleaned up and everything, it took three full weeks for our child to show signs of not detoxing anymore, he broke out from his belt line all the way up to the back of his head on his back in his arms. That's basically what we call a gluten rash. And just a bunch of red bumps that he broke out in because he ate way too much gluten, he shouldn't have had it in the first place. But to eat and drink that much gluten in a day and a half was just unheard of. So he had that. And then of course, like I told you in the last episode, gluten reacts in the brain for autism like heroin on a regular person. So we had the whole addiction behavior, detox behavior, terrible meltdowns and violence and self harm and just emotional roller coaster crap for three full weeks. It was terrible. So that showed me that yeah, all this gluten free Sugar Free Jazz is actually making a difference, because when he gets a hold of it, it's more of a nightmare than we normally deal with. I have noticed that he can tolerate goat's milk, though. So if that's something that you wanted to check out for your family, it's better than cow's milk. But we still don't really do a lot of it. He went through a phase also of eating bones and eating out of the garbage and eating garbage out of the sink. Just really strange stuff. And that was around the time when we did the the changeover with the blood type diet that I told you about last episode. And honestly, it was so stressful for me, I can't remember if it was before we started the blood type eating or after but it was horrifying. The child was eating chicken bones, he would just crunch them out, you know, and I didn't I found out because there were no bones anywhere. And so I had to learn that way that oh my gosh, he's eating bones. And then he would just dig in the garbage and eat scraps out of the garbage. And the boy ate a pound of food at a time there was no reason for him to eat scraps from the garbage and food that was soaking in the sink crusted on plates, he was reaching in there and eating it. And it's just horrifying. So I'm not quite sure where that came in. But I thought that would be something to tell you about. And we also had a huge problem with teachers and therapists at school, different schools, they all use food as motivation for his learning and his therapy. And I am completely against that we kept trying to tell them you know, you're you're ruining his relationship with food, everything is tied to food. And that's just bull you don't you don't have any other positive reinforcement, you have to just make my kid eat all day, every time he does something good. He has to have a cookie, that's not okay with me give him other positive reinforcement. So that's something that I'll probably touch on more in another episode. But these are all little things to watch for in your child's life. Because when you're making moves in your own household to help your child and give them the best sensory experience for their lifestyle, then people are working against you outside of your home. You've got therapists and teachers who don't respect your boundaries and they don't obey what I call parent law. They don't do the things that you say have to be done. And then they they have their own bright ideas and they force those onto your kids. And then you have to deal with that at your house because now your kid has a new normal that you did not okay really got to work closely with educators and therapists. I don't think that they should have as much authority in our child's life as they give themselves they should not be the ones feeding our children, they should find better, more constructive ways to motivate our children. Now our kid is not in school anymore. He was kicked out when he was 17. Again, another episode but I'm a lot happier as far as the outside influences go now that he's not exposed to all of them. He's getting therapy. Now. Finally, he just had his own his first therapy session today. We've been waiting four years to get some kind of service since they kicked him out of school and they're not using food to motivate because it's at a hospital setting kind of so I'm glad that's over but it's really something that you should I have found that we also have to worry about things like birthday parties going on at school where you know, not all of the kids are on a gluten free diet, and they may have their parents bring in cupcakes or something like that. So it's important to communicate with your child's educators and the probably look into and make sure that you're comfortable with faculty there and tell them you know, if something like this is going on, and you have advance notice, please let me know so that I can supply something for my child so that he doesn't feel left out. And everybody's happy. It's really not that hard, if because they just take it upon them. selves at school to you already know it's coming. But to be surprised, hey, he brought cupcakes for his birthday. And they're just they're not gluten free, but and they have a lot of icing on them. But your child threw a big fit. And we didn't want to say no. So now you get to deal with two weeks of detox symptoms, motivate your child any way that they see necessary. And it's because we let your child have a sugary, glutinous cupcake, instead of just letting you know that a parent was going to bring in some birthday treats. And you could have brought something in that your child gets along with. So you really have to open their expensive for one because you have to supply the snacks. And eyes to that it's becoming more common these days than it was when our child was in school. So it may even be something that the faculty has on hand, the you know, some gluten free treats that can be given. But they can't be the same treats that are used for motivation in therapy, if that's what they're it's also extremely stressful. Your child doesn't necessarily doing, because that's not a treat that doesn't match the cupcakes or the brownies or whatever the child's parent has brought in. So it has to be something that matches at least in our house, I have found that you have to watch out for know the difference between what's normal at home and what's relatives, if relatives are going to come over and they think they're going to treat you to something that's not a bottle of wine, that and it's something that you can actually eat. Now it's a problem. They don't know about it, or they didn't think about it, but they might bring you an ice cream cake from Dairy normal at school, because school has different normals Anyway, Queen or something. Well, guess what, my kid can't eat that. So hopefully you have given me advance notice that you're going to bring that and I can create something at home that my child will enjoy. But most likely, you have not told me it's been a spur of the moment decision, you bring it into my house, it are you in therapy? Or are you in class? Well, what's normal in passes right past my child's face, and now he's gonna be pissed because he's not going to be able to eat it. And now I have to scramble in my busy lifestyle. And I have to figure out something that will make my kid happy so that everyone else class isn't necessarily normal in therapy, and vice versa. And can eat the ice cream cake and the kid doesn't feel left out. It's a terrible thing to feel that your kid feels left out. I know I wouldn't want to be left out I don't I hate looking at people just enjoying a whole bunch of food that I can't eat. I don't hate it anymore. But I did when it when I made the then again, at home, so lots of outside forces come into play here. transition and everything. It's hard, you know, and you just gotta get cooperation from those around you anyone that has any kind of impact on your child's life. You just got to let them know what you're doing for your child's health. It doesn't matter, nothing else matters. None of your other reasons matter - for your child's health. Please let me know if you're bringing something for everyone to eat. Because it may not be something my child can eat, I may have to make adjustments. It's only fair and being a special needs parent, you have every right to put that out there. It's not being ungrateful. It's not that you don't want houseguests. It's not that you don't want them to show their affection by bringing something for your family. It's just that the special needs child doesn't get treated as part of the family in that instance. So we need to have everybody on the same page now that is autism awareness. That is the stuff that I'm talking about. If you care about my child, if you care about me, if you care that autism sucks and makes our lives hell then please listen to what I'm saying. When I tell you my child can and cannot eat this, this and that you have every right to do that. In my next episode, we'll talk about our educators and special education directors and all of those important people have tried to influence my child's development and have tried to influence us as parents to go against our own wishes and our own beliefs because they think it would make their job easier how they go against parent law and nobody ever thinks about how what they're doing affects your child and affects your family unit and I'll tell you about our experience with FAR mechanicals, so I know if you're anything like me you've run out of time for this episode I try to keep them short for you I know you're super busy and worn out again please feel free to visit my podcast website at he s a dot Buzz sprout.com You can see all my show notes there any product links with my affiliate codes to help support the show you can also click on the support the show link on each episode and that'll take you to the buy me a coffee page you're welcome to buy me as many coffees as you like. And once again, a portion of the proceeds from any of your support will go towards helping severe autism families in need who are not able to supply their loved one with the safety or sensory items that they desperately need. If you are one of those families please drop me an email at contact dot parenting severe autism@gmail.com Don't forget to look for my next episode we'll talk about pharmaceuticals and school faculty and all the disrespect we receive as parents of severe autism. Thanks for listening. Hang in there. You're a superhero