How To Manage Diet Restrictions For Behavioral Disorders

Episode Transcription

Dr. Nicole Beurkens: 

Hi everyone, welcome to the show. I am Dr. Nicole and today, we’re going to talk about how you as parents can help children get on board with healthier ways of eating, especially if they may require a more restrictive or specialized diet. I know this can be a major challenge and obstacle for families, especially if you have older kids and these maybe preteens, teen years through young adult years, and we really want to help our children understand why we’re encouraging them to eat or not eat certain things, and really how to tune into their own bodies to figure out what does and doesn’t feel good to them.

And to help us explore this topic, I have invited a parent who has been there and done that to join us today. I first heard Suzie Carpenter speak at a conference recently for parents and professionals, and really loved her message around how she helped her own daughter and her family embrace a way of eating that supports physical and mental health.

So let me tell you a little bit about Suzie. Suzie Carpenter is the author of ‘On the Bright Side’, a best-selling memoir documenting the emotional journey of parenting a daughter with autism. After her daughter Kelly spent 5 years on antifungal medications while also following the very restrictive specific carbohydrate diet, Suzie learned a new approach to healing the gut through membrane medicine. Suzie also uses this approach to alleviate her own chronic health issues.

A pioneer in the grain-free and paleo movements, Suzie has worked with hundreds of clients to strategize how to implement dietary changes with ease and oh my goodness, so many people listening are going to just love to hear about that. While Suzie’s extremely knowledgeable and experienced in the dietary aspects of managing symptoms of autism and related disorders, her true passion lies with igniting the spark within. Instead of being the food police, she transformed the necessity of eating healthy into empowering her daughter to be her happiest self, and there is no doubt her daughter Kelly’s positive outlook is an inspiration to many, this the title of her book, ‘On the Bright Side.” It is such a pleasure to welcome you to the show, Suzie — thanks for being here. 

Suzie Carpenter:

My pleasure being here, thank you for having me.

Dr. Nicole Beurkens: 

So I want to start out with just — your bio kind of talks about your journey and sort of your history with your own daughter, but I just want you to talk a bit about that to just help parents know a little bit about your story with your family and with your daughter. And then if you can kind of talk to us about what inspired you to really commit to dietary changes with her. 

Suzie Carpenter:

Absolutely. So we all kind of started — it all started with the diagnosis of autism in the year 2000 and shortly after that diagnosis, which in and of itself is a process, as many of you may appreciate, and of course going back to 2000 is a while ago, so autism wasn’t as much on the radar. Nevertheless, about 6 months after that, she started having GI symptoms with diarrhea, vomiting, we thought it was a virus but it didn’t go away. So after 6 months of those symptoms continuing, going CHOP — Children’s Hospital of Philadelphia and not really getting anywhere, her symptoms persisting. We did end up having her scoped and we figured out she did have celiac disease, she does have lactose intolerance, she also had C.Diff — a lot of the common denominators that we see in our kids.

Again, back then it was kind of new news, even our pediatrician wasn’t familiar with any of that, so we started out kind of treating those things first with a gluten-free diet, dairy-free diet, and then about another 6 months later, when she still wasn’t improving, her immune system was very low, so she didn’t have good resistance to any kind of virus or cold or ear infection — all that kind of stuff. So that was one sign. The other sign was that her belly still hurt, so we ended up going to a DAN! Doctor that helped us figure out that she had some other sensitivities in terms of food. So that was kind of phase 2. So phase 1 was discovering, okay, she has these biological things — celiac disease, the lactose intolerance. 

Phase 2 was — Okay, those other things she’s eating that are also impacting her gut and her brain and her sleep, because she didn’t sleep at all. So the list was fairly long, although by today’s standards you hear people talking about delayed food intolerances and they have sometimes 30, that’s where Kelly was — sometimes more. So the key ones there being corn, soy, citrus. Corn, soy in everything, especially if you’re on a gluten-free diet, a lot of the substitutions are corn, right? So got her off all of that.

Now, I say this as if it was easy, it wasn’t easy. Saying that way only because I’m looking back so long. But anyone looking to implement these changes and has not done it, it does take patience, time and trial and error. And that’s exactly what we did and the good news about that is that it actually helps you to see more clearly why you’re doing it. It helps you see more clearly what’s happening in your child. So instead of just following a list and going, “Okay, check it off, check it off.”, you’re actually watching, observing, seeing and saying, “Okay, this is actually something we need to do.”

So that’s the beginning of the tuning in part. So now this cute little girl at the time is 6 years old, blonde hair, blue eyes, my little baby, my second-born and she looks up at me and she says, “Mommy, can I please have some orange juice?”, when she’s not supposed to be drinking orange juice — and I cave and I say, “Sure, you can have some orange juice.” And then we see Jekyll and Hyde. We see the tantrums, we see the screaming, we see the hitting, we see the throwing things.

And that’s when I started to really pay attention, I started a journal, writing everything down. Because with Autism, you are also kind of tracking, we had ADA in our home, almost 40 hours a week. You’re tracking behaviors and all of that too, so it kind of coincided, I would watch and say, “Okay, these things are connected.” Everybody thought I was pretty crazy at the time because, again, there wasn’t a lot of talk about this. But in my gut, I really started to get stronger and stronger and stronger in my belief that yes, this was making a difference. 

So then, phase 3 was going grain-free. And our DAN! Doctor recommended that, because Kelly, as you mentioned in my bio, was on Lamisil for 5 years, an antifungal. We did what the doctor called ‘The Antifungal Parade’, which was a whole long list of different antifungals. And some of them worked, some of them didn’t but the Lamisil was the winner. And so when she was on the Lamisil, her behaviors were less. She was more calm, she was more focused and she slept. So it was kind of a nice, magic pill. But we know that it wasn’t the true answer and we had to keep getting her blood checked to make sure her liver enzymes weren’t elevated and there wasn’t a problem there. So eventually we got her on this grain-free, specific carbohydrate diet, that was the next step, and I decided to go on that with her. So if anybody has tried that diet, I don’t know, your audience — it’s tough, it’s really tough.

Dr. Nicole Beurkens: 

It’s a very tough one, so I love how you’re laying this out in stages because sometimes people will say, “Yeah, our practitioner recommended starting with a specific carbohydrate diet, and I’m like — okay, that’s where you’re going to start? That’s going to be rough, right? You’re saying this was an evolution for you, starting with the gluten and dairy-free, kind of getting your feet under you with that and then moving to remove some corn and soy, and then the SCD diet, because it is, it’s a tough one!

Suzie Carpenter:

Yeah. And I think one of the things, looking back — I can say this: One of the things that makes it tough is this whole concept of legal and illegal. So you know, you have these lists of okay — You can drive yourself crazy looking at boxes or things and saying okay. In today’s world, it’s a little easier because there are all these groups online and resources for us that makes it a little less daunting. Back then, I had to have my binder with things printed out. 

Dr. Nicole Beurkens: 

You know, I tell parents today — because I’ve been in this field since the mid-90s and I talk to parents today of young kids, and I’m like, you have no idea, actually, how much easier this is now to have your child on a special diet than it was back in the day, like the time that you’re talking about. Nobody was doing this, there wasn’t a source of support, they thought we were all crazy and you didn’t have easy access to stuff and we were cooking everything in our kitchen, right? You could not go to a store and find these things! So for those of you who are just starting out with this or maybe have young kids, yes — I am not negating the challenge of any of this, it is a challenge but it is true, what Suzie is talking about, trying to do this in the early 2000s — that was a whole other level of difficulty. 

Suzie Carpenter:

And the exciting part of today is that there are more people doing this. There is more research, there is more knowledge and so, therefore, there are more products available. That is the good news. Things are somewhat relative, so we can go with that. 

Dr. Nicole Beurkens: 

So you decided — okay, we’re going to do this specific carbohydrate diet with Kelly, and you decided that you were going to join her with that, you were going to do it too. 

Suzie Carpenter:

Right. So I’m sure there are many parents out there that have made the same choice, this isn’t a unique thing. But my reason for mentioning it is because I started out gluten-free first and felt so much better in terms of my body. So I had some horrible issues with acid reflux and ulcers, colitis and also chronic pain. So when I went on the SCD, the reason why I mentioned it, again, was because it was really powerful to feel in my body what Kelly might be feeling.

Of course everyone’s body is unique, but nevertheless the die-off symptoms of going off sugar — I was a sugar addict and sugar was my best friend. My therapy — you know, in addition to going to therapy. You know when you’re struggling with a child and then a sibling and all of these things that we deal with: So it helps to sort of feel some of the things that she was going through and then feel the good things. When things got better, it was like, “Wow! Okay, I see why we’re doing this.”

And so that awareness kept growing and growing and growing in my body and in observation of her little body. And so that’s where the passion started to come in, of — Okay! This is the way! Now again, that being said, there were certainly bumps in the road, sometimes it was 3 steps forward, 2 steps back, and how do you keep committed? I’m sure lots of your listeners were wondering that, how do you stay committed? It’s a big commitment! Especially when you have other children. 

So lots to talk about, lots to talk about, but the commitment for me was fueled by every success that we had. Every time I saw myself feeling better, herself feeling better, and there was just this inner knowing. And that inner knowing is so important and that is what I’m really trying to focus my effort on teachings these days because I think it’s powerful for all of us to understand why we do what we do and the ripple effect of that. So for Kelly, eventually — my daughter, was she’d say, “Can I have that glass of orange juice?”, even though down the road, I knew she shouldn’t and she most of the time didn’t, but the better example would be grapefruit. She said, “Can I have a grapefruit?“ So she’s off of citrus for, let’s say 5 years. I’m like, “Okay. Go ahead, try to have the grapefruit.” Within half an hour, she has regressed and she’s yelling and she’s running around and she’s throwing things and she’s crying and she storms off. When she calms down, I’m able to go to her room — at this point, she’s probably maybe 10-11 years old, I’m able to go to her room and talk to her about it. And look what happened, what do you think? Could it be the grapefruit? Because these triggers present themselves — not just as diarrhea or vomiting or headaches or skin issues, they present themselves as hyperactivity as the rage behavior, as the inability to focus, the running around. So there’s so much that goes into the reaction.

Dr. Nicole Beurkens: 

And I think that’s one of the things that can be challenging for some parents, if their child has some clear GI issues — as you mentioned, like celiac or has chronic diarrhea or terrible constipation or pain, those kinds of things, it’s easier for parents to see that connection with food and to think about some of those interventions, what I think it’s more challenging is for parents, and this may apply to some of you listening, who are like — “Yeah, my child doesn’t really have any of those issues, but they are having the other kinds of things you are talking about from a brain and neurological standpoint of just great difficulty managing and regulating their emotions and behaviors. Maybe having some physical symptoms that they can’t communicate that we wouldn’t see. Things like headaches or pain or things like that, so I think that’s really important and can be a challenge to parents fully embracing or committing to this process of thinking about food and diet change. If there isn’t an obvious physical symptom connected to it. 

Suzie Carpenter:

Right, exactly. I’ve run into so many parents over the years who have said, “Well, I’ve tried that and it didn’t work.” Well, my next question is, “Well, can you please tell me a little more? I’d love to sit down and talk. How did you do it? I’m not saying that what you did didn’t work, I’m just curious.”, that place of curiosity. Because my belief system is such that there is always a way. Whether it’s one thing or another, again, not saying that they’re doing anything wrong — just, can we keep exploring possibly another strategy instead of it being either/or — it’s yes, and. 

Dr. Nicole Beurkens: 

And I love that about your story in sharing your journey. So there were phases to this, right? You implemented gluten-free and dairy-free. First, you saw some benefit and some improvement, but you were still seeing things that weren’t where you felt they could be for Kelly. And so you looked deeper, you said, “Okay, what can we add? What else can we do? And I think sometimes, people just stop there and they go, well I tried diet changes, I tried a gluten-free diet or we tried removing artificial sweeteners and dyes and things.

And I love what you’re saying that there’s always more, there are always other things to explore. If you feel in your gut, like hey, my kid has more potential than this, there is more yet to uncover. There is more in my child to be discovered and to let shine here, then you’re a great example of — you kept digging through those layers, it’s like okay, what could be next? Okay, what can we do here? And for you, that led you down a path of some really pretty significant food changes for her. 

Suzie Carpenter:

Absolutely, yeah. Beautifully said, because that quote, “There is always more, and also letting your child shine, for me, there was that, as I said, that inner knowing or that inner calling to always honor Kelly first, whether it was therapy — because ADA is so rigid, or the diet, which again, was rigid. And so to tap into her and how she is responding even if her language isn’t quite what it could be or her behaviors are getting in the way of our communicating, but that belief as a parent that comes from the love.

And we talked about this when I was at the conference. Just that — we all love our children, but when our belief system and our actions are really centered around that sort of knowing what — you can’t see it, but you somehow believe it because you believe in them, you believe in something bigger than what you can see and you believe in not giving up, and you believe in them being their best, like Kelly and I will have conversations, we do this because we want to be our happiest selves. If she gets a little grumpy, even today, she’s 23, so she’s making a lot of her own choices. We’ll just have that conversation, and luckily, we started that earlier on, it’s another thing.

I’m sure some of your listeners are starting this later, and it’s harder to implement changes with a teenager or an adult than a child. So these conversations are so important if they’re able to communicate with language. So that mindset, that belief, and there is also the component, I think with medication, I had said she was on the Lamisil — there was a point where she also had a diagnosis of ADHD in addition to autism, and I was going crazy, I went to her psychiatrist and I said, “I think we need to put her on something because I am going crazy.” She gave me the script and I went home and I filed the scripts in my office binder drawer because there was something in me that just couldn’t do it. I felt like it was cheating, I felt like I would be stripping her of her truth of her spirit. I knew nothing about medication, I had no personal experience with it, I had read no books on it, it was just again this inner knowing of — I just couldn’t get myself to do it.

And I talked to many other parents at therapy, at speech therapy, at occupational therapy, the therapists, the teachers and they all were recommending, “Put her on this drug, that drug, this one works, this one’s working for my child: And I felt bad! I thought, “Okay, we’ll they’re all doing it and I’m not, maybe I’m a bad mom.” And it’s the same thing, I think with the diet, where you feel like maybe I’m hurting my child by removing nutrients — “Oh they’re not having milk, oh they can’t grow, the calcium in their bones.”

So these are all the things that I am bringing up that relate to that fear. And when we lean into the love, it’s the belief — okay, I believe this is the right thing to do, I believe that I’m going to be actually harming her if I do give her the drugs. So even though I’m different, and even though I am choosing the road less traveled, I have to go with my belief to be whole, to be in my truth. So that’s kind of how I operated and so she never went on any medication, and I’ve heard you talk about that from all other angles and I appreciate you for that. 

Dr. Nicole Beurkens: 

But I love you cheering them, so many of the parents listening now — so many of our listeners, that really resonates with them because these things are the road less traveled, right? Whether we’re talking about not overusing medication with kids, we’re talking about trying nutritional interventions while the pendulum is shifting, I think it’s swinging more in that direction, this still is the road less traveled and there can be a lot of pressures from other families, from therapists, from teachers, from family members, whatever, to just do the sort of things that most people are doing.

And I love that what you’re saying is that you decided early on in this process that you needed to be true to you and to what felt right to you as a person, as Kelly’s mom, as her advocate and to really use that as sort of a guiding light in this process as opposed to just what everybody else thought should happen. And I think that’s hard for people and so I love that you’re speaking to that, and I think one of the things too — all of this stuff can get so stressful for parents and for families, right? The diet changes and the therapies, and just having a child who can be challenging to support and manage on a moment to moment basis.

One of my beliefs as both as a parent myself and as a clinician is, one of the most profound and fundamental things we can do to help heal kids is to bring stress levels down in families, and in parents in particular. So you’re really speaking to that, of saying “I recognize for myself as a parent the choices that I needed to make that we’re going to feel good to me and reduce my stress.”, and the therapeutic value of that, I think is profound.

Suzie Carpenter:

That’s an incredible insight, actually that you’re seeing in this conversation because the mind is at peace and the stress piece, really where that showed up was with Kelly. We were doing all the right things, and we were actually probably going fast forward 2010, another 5 years ahead, she was doing quite well, but took a huge step backward because of school issues, and I didn’t see that, I couldn’t see the forest from the trees, I kept thing, “What am I doing wrong? What am I missing?” And it was the mindset piece. It was the bullying happening at school, it was the teachers not understanding her and all of that negativity and stress that she was feeling that was impacting her body and biologics actually because we saw it in blood work. Phenomenal insights that you offer with that, bringing that up because it feels often like it’s more stressful to do the thing that’s hard, but if it’s in alignment with what you believe, it’s actually less stressful. 

Dr. Nicole Beurkens: 

That’s a beautiful way to put that. You touched on something a minute ago that I want to circle back to because I think this is an area of struggle for a lot of families, and that is how it’s one thing, as you said, to implement these things when your child is little and you have more control, right? But as they get into those tween and teen, then into the young adult years, that’s challenging to stick with some of these things, particularly for many kids we are talking about — these are lifelong health strategies and nutrition approaches for them, right?

All we can do is a certain amount of healing at a root level and maybe help kids as they grow to be able to tolerate more things. The reality is, for many kids with neurodevelopmental issues, these are things that are going to support their brain and their body throughout their lives. So how have you done it and what suggestions do you have for parents around helping your kids stick to the things you know help them and work for them, while also trying to foster that very normal desire for them to have more independence as they get older? It’s a tricky thing.

Suzie Carpenter:

It’s a very tricky thing. I believe that when we know ourselves when we know our children — and while that sounds sort of woo-woo or cliche, there’s a lot to be said of that awareness of your own triggers. Like do you have a sense of needing to be in control, and so therefore when your child is not doing what you’re saying, you get triggered? So that awareness that it is a two-way street, that awareness of both self and the other, really I think is a powerful lesson.

And being willing to be vulnerable in that and to bring up the choice and hopefully be able to have that conversation so there is that give and take. So you can say, well, if there is something — I don’t know, a common example is the birthday party or the friends all going out for a movie with their popcorn and they want to get the pizza — I think those kinds of decisions have to be made by you on an individual basis because again, you know your child best, they know how they feel in their body, what are they going to do? If they have that popcorn at the movie theatre, are they willing to pay that price? Or the pizza. Or would they rather not feel sick, and then, is there a substitute, can they bring something, can they buy a snack instead, or soda? I know soda is not great, but a diet coke, in some cases is better than the movie theatre popcorn, and that’s what we did with Kelly. And they even have the caffeine-free now, so you can get the caffeine-free.

So those kinds of layers of the choices again, going back to it’s not all-or-nothing, it’s not either/or — can we kind of layer in some things? And remembering it’s not, you know, if something does happen — you make a mistake, they make a mistake, it’s not the end of the world. We get over it and we move on, so there is this constant need, I think, to be in conversational whether it’s beforehand, there is always — a beautiful thing to have prep, especially I think with our kids on the spectrum or these kinds of challenges, to prepare them for what may be coming. And then, of course, the post.

This is, I think, true even with people who aren’t on the spectrum or just looking at dietary changes and struggling. It’s kind of how do you prepare and then how do you respond afterward? Because it makes it more objective, it takes out the emotional component and that sort of attachment and judgment? We don’t want that. We really want to try to be as objective as possible, and we want to look at it at face value, and that’s how we kept going. And that’s where the journalling came in too, journaling is really helpful to sort of connect the dots and helps fuel your inner knowing, I think you said, how do you know, right? How do you know? So I think choices are huge and to get your choice to understand what they feel in their body, and to do that, not necessarily in the moment where it’s bad, but a little bit later so they can look back and go, “Oh, shoot.”

So those are just a few thoughts, and I think working with someone on these kinds of things too. If you can get somebody to coach you or help you through some of the challenges, that also helps because they can talk to the child, so it’s like a third party, right? It’s not mom or dad saying it — it’s someone else. Again, that helps them to feel more empowered. I think the key is for you to feel empowered and them to feel empowered and that you work together in it. 

Dr. Nicole Beurkens: 

I think those are such great tips and things for families to think about. You mentioned the journaling and so before, here’s the choice I’m going to make, I’m going to eat this or I’m not or I’m going to have something different or whatever, and then doing some reflection afterward of what did I notice? I know you were doing journalling about that, you engaged Kelly in doing some journaling with that too. Can you talk a little bit about what that looked like?

Suzie Carpenter:

Absolutely. Yeah. So for me, whether it was just a little notebook, like a little spiral — they sell them at target or even the grocery store, a little I want to say 4×2 or something, I would buy these little ones so I’d have them with me all the time, because you traipsing around to different appointments and things. Now today, of course, people put notes in their phone. Kelly puts a lot of her journaling notes in her phone first, but then she does have a process where she goes and writes things down, so she’s really taking the time to ultra-process what’s happening, because I think the writing, case in point here with Kelly, and this is true with so many people today using technology, when you write, you know your hand is connected to your heart and you’re writing and you’re processing things in a much more profound way than just typing it out on the computer or typing it in your phone. So I encourage people, a good first step is to definitely use an app or your phone to write a note when you’re out and about, but if you can incorporate an actual journal, as you said too, to reflect back, you’re reflecting back on the moment much more powerfully when you see your own handwriting.

Dr. Nicole Beurkens: 

There’s good research now on that, actually showing us in so many ways why actually physically writing things out is better from a memory standpoint, from an emotional processing standpoint, just all of that. So I love that and I like too, as a clinician, kids and people having something tangible that they can, when they encounter a situation — again, like you were using the example of going to a movie with a friend. They can flip back easily and say, okay — how did I handle that time? What choice did I make the last time, how did that work out — oh, right. Ugh, I decided to do this and this is what happened. It helps inform your decision making then for the next time and so I like having the tangible journal but I think it’s also great, however people are going to do it is how you should do it, whatever is going to work for you and get you keeping track of things is the method you should use. 

Suzie Carpenter:

Absolutely, the key is just doing that, taking the time. Because in taking the time, whether it’s digital or on paper, you’re taking the time to pause, you’re taking the time to reflect, you’re taking the time to be mindful and you’re taking the time to acknowledge yourself, your body and the environment, whatever that may be: Your food, the people, blah blah blah.

Dr. Nicole Beurkens: 

Which is a huge thing from the standpoint of autism and related disorders too, because just from a brain and processing standpoint, that self-awareness, that awareness of myself of my own physical sensations, my emotions, my reaction to the environment around me — that can be challenging, and this gives practice for that too. So not only is this sort of keeping track of things and having a journal — not only is that helpful as far as solidifying that for them, what feels good or doesn’t feel good to me as far as the eating choices I’m making, but it’s really working on one of these core issues of self-awareness and how things impact me, which is huge. 

Suzie Carpenter:

Yeah, you brought something up too that I think is important to mention, which is a lot of times with therapies like ADA and I apologize, because I’m somewhat of an older person in this world, so I don’t know what they’re doing today, but when we did it, there was a reward component. So when you’re making changes, just human behavior — you would be the expert on this, is to build in some kind of reward.

So when you’re making these changes, the choices — in other words, the substitutions, the alternatives and today we have all these options for healthy alternatives because the homemade cookies that I used to make don’t compare to the Simple Mills one you can buy today. They look like real cookies, they come in a box. So to build in the reward and to use the things that you know work. So you know your child, but you also know your strategies, so first/then was such a powerful one for us. So first, this, then you can have that. So using some of those strategies in the process, especially in the beginning, until you get in the groove, until you really fully know what’s happening, I think is a super powerful tool. 

Dr. Nicole Beurkens: 

And I like what you said when you were talking about the example with going to movies or birthday parties or whatever and you talked about giving choices, and what I loved about that is you were willing to give up on the ideal, right? Because sometimes we really lock into power struggles with kids, especially teenagers and young adults over well, you know, you really shouldn’t have that, or that’s a really bad choice — You were willing to say, okay, what about having a pop?

Not ideal, right? Not something that if you were going to make the choice for her, you probably would have done, but you were helping her think about the options that she had and where she maybe would say no to some things because she knew those wouldn’t feel good to her, but what choices she can make instead and letting her explore that and have some independence around that. Even though it might not have been ideal, that’s so critical, I think, for parents who have kids at those ages as we’ve got to let go of what we think the ideal might be and let them have some options and explore and try some things that we may be pretty sure are not going to go well, but we need to let them try that and experience that because the power in learning that for themselves — having made a choice and then discovered something is so much more profound than just if they feel we’re dictating or telling them all the time what needs to happen.

Suzie Carpenter:

Absolutely. That’s so well said. And as you said earlier, too, the component of the independence: They’re making a choice and they’re feeling the consequence of the choice, good or bad. So yeah. 

Dr. Nicole Beurkens: 

Absolutely. I’m curious for you to talk about some things that you found most helpful in this journey. So you’ve been on this journey now, you said Kelly is 23. So young adult, you’ve been on this journey for a while. What are some of the things that you have found most helpful, particularly in terms of the food and the health types of pieces with her. 

Suzie Carpenter:

I think definitely just being in conversation is #1. So she was at a school for a long time that she’d be leaving at 6 or probably like a lot of you listeners, our kids go to schools that aren’t right in our backyards, so she leaves at 6:30 in the morning, comes home at 4:30 in the afternoon and she’s not buying a meal there, everything is packed and you’re making these special foods and whatnot. So being in that conversation, being prepared — so knowing that, acknowledging that and arranging my schedule to be available, to be home when she comes home with a meal ready for her. Feeding her the good stuff first, so when she’s famished, have the chicken, the roasted chicken, and the green beans, maybe a few potatoes — whatever it may be, and then move into the ice-cream, dairy-free ice-cream or whatever she may be craving or wanting, that’s a special treat.

That’s in a sense rewarding her for the long day. Okay, you’ve gone that long — definitely low blood sugar, not a lot of things to eat. The lunchbox thing is crazy, so I think that just being in conversation. Now some parents, if you’re child’s able, having them pack the lunch, make the choices. Again, we would have those conversations, but she wasn’t upset about any of the things I was packing, so I could pack things, it was fine. But empowering them in that way too, they can pick what they’re putting in their lunch, so that’s a good thing too. And the drinks, whatever they are taking along with them.

So certainly #1 is definitely the conversation there, so that then she’s in these other situations whether it’s at school, with her friends, with family when I’m not around, to be able to make those choices and carry on in the way which she needs to and not feel like, “Oh mom’s not here right now.” Because people used to joke with me and say — I’d be at a friend’s house or something and they’d say, “Oh, so is Kelly home eating Oreos?”

Because I actually still bought some regular food for her sister and my husband because her sister in particular, life being so compromised in terms of her space and time — mom time too, so Kelly was, I was lucky she didn’t go into the drawer and steal the oreos. So I think that’s key. There was a turning point where I was like okay, I’m no longer the food police. This isn’t about me controlling what’s going in her body. It’s really about her feeling what’s happening in her body. So I think those are the really big key components. And then in the teen years, again, that concept of trying to bring out the independence through the choices. She took some school trips where they were gone for a weekend, not a lot but a good half-dozen of those where it was incredibly challenging and so, again, we were in conversation.

I’m trying to think of some other strategies, but certainly the component today of knowing there are a lot more choices on the market that you can buy, that you can — the pizza, the cookies, the chicken, whatever it is that looks real, you don’t have to make everything from scratch from an energy standpoint, but also from their standpoint, they’re saying okay, I’m getting something. And then this conversation round being different, it’s a really big conversation as you and everyone here knows. So a lot of what I’m talking about is a mindset more than it is, “Okay, the green beans, broccoli —” right? Because I think once you get the mindset down and you really feel more comfortable around that, it’s a lot easier to tackle whatever it is you need to tackle in terms of food lists or the food goals.

So that’s really where I am today, and it took me, as you said, a long time to get here, because I was the person checking off the lists in my binder and watching the legal and illegal, but I didn’t have anybody helping me either, I was on my own, navigating it. So that’s why I became a coach, because I thought how cool would that be to be able to help other people going through these challenging times and be able to say I get it, why don’t we try this, why don’t we try that? 

I kind of call myself a “food strategist” half the time because it’s not the role of the dietician, it’s not the role of the doctor, it’s really more about the strategy, as I said before, it’s the belief that there’s always a way. So whatever we need to get done, whatever we have to live within terms of the diet, if its GAPS, SCD, low-histamine, whatever, let’s take that and create something cool, fun, creative — making food more playful rather than a chore. That to me, I think, was the biggest thing of all in terms of the food piece, because I was the kind of person that always enjoyed cooking, and I was a good cook, but I had to have a recipe. I couldn’t cook unless I had a recipe.

And for me, this whole journey opened me up in many ways to feeling less fear and to feeling less restricted and part of that was the cooking, was okay, I can actually make something from these three things and not have the recipe, and I gained confidence then in that process. I think that’s huge for a lot of people too because when you’re not comfortable with the food, it’s definitely more overwhelming. So taking the time to experience that can be incredibly powerful and it just happens through time.

I was just at an event last night for our local soup kitchen, I cooked a fundraising dinner for 35 people, and one of the people that was there was a friend of mine, and we were all sitting at a table and I don’t remember the exact conversation, but the gist of it was, she said exactly that — she said, “Suzie taught me…” and she doesn’t have any children with special needs, but she just said — and I didn’t realize that I taught her that. It wasn’t something that we specifically talked about, but in watching me, she felt that she learned that and so for me, that really, really helped to loosen up and accept and continue the commitment because it was no longer, as you said earlier, the stress. It’s so much less stressful and that’s so important. 

Dr. Nicole Beurkens: 

Yeah, and I love — you’re talking about really shifting the mindset from all the reasons why something’s hard or can’t work to looking at what are all the ways this can work? And starting with that, and how you have used your own personal experience with your daughter as a parent, all the knowledge that you’ve gained about these kinds of diets and cooking and all of that, and you’re using that now in a professional way to mentor and walk alongside other families to do this. I think that’s amazing and a much needed resource for families. I’d love for you to share where people can find you online if they are interested, and I hope they are, in learning more about you, about your book that you had talked a little bit about — where they can find you. 

Suzie Carpenter:

Yes, thank you. They may find me at suziecarpenter.com, my name — and you can also google my name and most likely you’ll come up with some resources including my book, which is called ‘On the Bright Side’ and that is available on Amazon, go there, read the reviews, check it out, it is a memoir, so it doesn’t give you any step-by-step, that’s my next book I’m working on, it’s a recipe book, it’s more step-by-step instructions for people. So if you are interested in coaching, if you’re interested in learning more recipes, strategies, things like that — just go to my website, hit the contact form, shoot me an email and we’ll have a conversation. 

Dr. Nicole Beurkens: 

Awesome. I highly recommend that you check out Suzie’s book, we’ll have all the links below with where you can find all of that — and also, you’ve got great recipes, one of the things that I was really impressed with when I heard you speak was, you really have, I mean honed a lot of really great recipes, and because you’ve been living this with your daughter, you know the things that families need to have replacements for! So you’ve really got some great recipes and things available, so I just really want to encourage all of you listening to check out Suzie’s website, check out her book — lots of great resources there. Suzy, thank you so much for being here with us today, this has been really just such an enjoyable and beneficial conversation for people, so thank you for taking the time to be with us.  

Suzie Carpenter:

You’re welcome, great to be here and it’s all about the karma, I appreciate you and everybody for listening, thanks!

Dr. Nicole Beurkens: 

Thank you. Alright, everybody, that’s it for this episode of The Better Behavior Show, we will see you here next time.