Metabolically Speaking

11. Learning Without Barriers: Navigating School with a Metabolic Condition

• Season 1 • Episode 11

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Learning Without Barriers: Navigating School with a Metabolic Condition
With Dr. Eugene Lubliner

Starting school is a significant milestone for any child, but when a rare metabolic condition like PKU is part of the picture, it can bring added layers of uncertainty.  Alongside school routines and making new friends, there are important considerations around meals and snacks, day-to-day treatment, and ensuring children feel supported in their learning.

In this episode, we’re joined by Dr. Eugene Lubliner, psychologist and school specialist, who offers a unique perspective shaped by both his professional work and his experience as a parent to a daughter living with PKU. Through years of supporting families and navigating the system himself, he has developed a deep understanding of what meaningful support at school really looks like.

Together we explore how accommodations can support wellbeing and academic success, what parents can do to prepare, and how needs evolve over time. We’re also joined by a very special guest, Eugene’s daughter, Addie, who shares her own experience of school life with PKU.

Disclaimer: The opinions expressed here are those of the guests/authors and not necessarily reflective of the views of Ajinomoto Cambrooke Inc. Individual experiences described herein are unique and not necessarily representative of typical outcomes. The content shared today is for educational purposes only.


Show Notes:
Get in touch with us:

Find out more about Cambrooke: 

Maridith Baker:

Resources from Eugene: 

Eugene’s website:

  • https://www.lpsli.com/

Lubliner Psychological Services, 2024 NPKUA Presentation:

  • https://www.lpsli.com/npkua2024

U.S Department of Education Section 504: 

  • https://www.ed.gov/laws-and-policy/individuals-disabilities/section-504

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SPEAKER_02

Starting school is a significant milestone for any child. But when a rare metabolic condition like PKU is part of the picture, it could be added layers of uncertainty. Alongside school routines and making new friends, there are important considerations around meals, snacks, day-to-day treatment, and ensuring children feel supported in their learning environments. In this episode, we're joined by Dr. Eugene Loveliner, psychologist and school specialist who offers a unique perspective shaped by both his professional work and his experience as a parent to a daughter living with PKU. Through the years of supporting families and navigating the system himself, he has developed a deep understanding of what a meaningful support at school really looks like. Together, we explore how accommodations can support well-being and academic success, what parents can do to prepare, and how needs evolve over time. We're also joined by a very special guest, Eugene's daughter Abby, who shares her own experience of school life with PKU. Welcome to Metabolically Speaking, the podcast that dives into life with inherited metabolic conditions. Privately brought to you by Cambrook, delivering therapeutic nutrition for more than 25 years and empowering families to live without limits. I'm your host, Meredith Baker. I've lived with PKU my whole life, so I know the ups and downs and all the in-between moments that come with navigating a rare condition. Each month I sit down with experts, advocates, and people with lived experiences for honest conversations about what it really means to live with a metabolic condition. Whether you're newly diagnosed, supporting someone you love, or have been on this journey for a while, this space is for you. So settle in and let's get into it. Joining me today is Dr. Eugene Loveliner. Eugene is a licensed psychologist, board certified behavior analyst, and certified school psychologist specializing in learning behavior and executive functioning challenges that impact academic and everyday performance. He has extensive experience working with families and schools to support children with additional learning and developmental needs. He is also a parent to a daughter living with PKU, bringing both his professional experience and lived experience to his understanding of the school system and support. Eugene, thank you for joining us. We're so happy to have you here with us today.

SPEAKER_00

Thank you, Meredith. I'm happy to be here. Really happy.

SPEAKER_02

Of course. It's gonna be great. Let's get started. We have some very valuable insights to explore today, and I cannot wait to hear more from you. So, with that, the first question is directed towards you. I know your daughter's gonna be joining us, but you've spent over 15 years helping families navigate the school system. And then your perspective became more personal when your daughter Addy was born with PKU. Can you share a little about your journey as a dad and how that changed the way you think about the families in school that have specific needs?

SPEAKER_00

Absolutely. Um, I was a psychologist for eight years before we had Addy. So I had a lot of experience at that point creating 504 plans, helping parents um support their children with whatever needs that they have in the school system. And when Addy was born, and I knew I then had to advocate for her, it it really brought a new personal angle to the work that I do. Because now I was advocating for my own child and needed to make sure that she was supported in that school system with what she needs to be successful just day to day, starting with her dietary maintenance. It really just changes how you interact with the students that you work with professionally. Um, and it also changes the way that you see your own kids when you have to go into the school and really advocate for them on their behalf.

SPEAKER_02

Yeah, it definitely adds a more personal experience and touch to what you're already working on. So I'm sure you felt more dedicated as time goes and continues to go as it is.

SPEAKER_00

Without question, it's it's it's it's a very rewarding experience. It is, it brings even more joy in my professional career because I know that the supports that I provide the students I work with, how that ripples and affects them in their home life. And I I experience it personally day to day.

SPEAKER_02

Yeah, you see the difference you're making now by just seeing others doing it for Addy.

SPEAKER_00

Absolutely. Absolutely.

SPEAKER_02

So for parents who are new to a metabolic diagnosis such as PKU, what are the biggest concerns you hear when it comes to starting school?

SPEAKER_00

Well, I think the biggest concern is a child that's starting preschool or kindergarten when they're four or five years old, parents are used to having complete control over their child's day for those first four to five years. Um every item that they've eaten, everything that, you know, has been prepared for them has been done by someone, either the parent themselves or a very close, trusted family member or or family friend. And switching to the school day, you're now trusting your child's health care to a team of people that you may not be as familiar with and you may not really know. And statistically speaking, those people probably have never heard of PKU, and and you have to educate them and make sure that they're fully on board and prepared before you send your kid there.

SPEAKER_02

That definitely makes sense with what age group we're also talking about. So, why can schools be particularly challenging for children with metabolic conditions, not just medically, but also socially and academically?

SPEAKER_00

Oh, sure. Um kids with metabolic conditions, in addition to the food items that they have to eat and the formula that they have to drink, um they run into challenges when they're trying to engage with their peers, particularly when you think about the early elementary years. Most schools allow food celebrations for birthdays, for holidays. Um we socialize around food at the cafeteria, and those things can be very challenging for any child with a metabolic condition because they can't have the same cupcake that is being distributed throughout the classroom. They can't eat the munchkin that that a parent decided to bring in for Thanksgiving. They have to always be vigilant and always be aware of what's going on around them and what they can and cannot eat safely. And it involves a level of planning and vigilance that most early elementary kids, even going into middle school, don't normally have to provide. They don't have to participate that way in the school day. It's much more natural and easygoing. And then academically, kids that struggle with their diet, kids that have fee levels that can fluctuate very rapidly, um can be prone to executive functioning deficits, that brain fog, which makes it difficult to focus, difficult to concentrate. And when you're having that experience on top of managing your diet, it really can affect you academically because you're not going to remember the material as easily as maybe uh uh a peer without a metabolic condition. You're not gonna be able to prioritize the work as effectively because of those executive functioning deficits. Um, and we want to make sure that we're accommodating students like that, and we want to make sure that we're providing as natural an experience for them as we possibly can. Um you know, in terms of social going back to the food, um one of the things that Addy participates in is the Cambrook Lunch Program, so that she has food provided by Cambrook, actually, um, that really mirrors very well the the hot lunches that the students in the the the typical students in the classroom can eat. So when she has uh when it's pizza day at the cafeteria, she has her own cheese pizza. When it's chicken nugget day at the cafeteria, she has her own veggie nuggets. Um and that type of provision when the school provides a hot lunch that is low protein and comparable for my daughter really does improve the social functioning. It allows her to just have that shared experience that all the other kids in the cafeteria are having. We also address it through 504 accommodations. You know, one of the accommodations in Addy's 504, and one of the accommodations that I advocate for all parents is a stipulation that um parents are notified two to three days in advance whenever possible for uh any event where food is being served in the classroom. And particularly in those early elementary years, that was invaluable for Addy because if I had a full understanding of you know the classroom Christmas party menu, I was able to then provide comparable options for her so that she could participate in the event the same way as her peers and have a plate that really looked like everyone else's plate, and that really is uh important in my opinion.

SPEAKER_02

Of course. I feel like there's a lot of things there that you touched on that I have responses to, but I like my like Addy myself had the 504, and I actually also had the IEP, and I had the Cambrick School Lunch Program.

SPEAKER_00

Oh boy, you had the trifecta.

SPEAKER_02

Yeah, oh me and Addie team. But but with all of that, that did really help support the social aspect and the health aspect of having PKU. I think it was very, very important to still be able to have every social interaction that everyone else was having. We still had the Halloween trick-or-treat candy at our desk that we could eat, or we still had the Valentine's Day heart candies, or whatever it was, the Christmas party. Like everyone knew, but I think also something that was cool with the Cambrook school lunch program is we always had a box of their cookies on hand.

SPEAKER_00

Yep.

SPEAKER_02

And so the school could order the Cambrook cookies and just stash them. So I could be like, if there was a quote unquote emergency and there was a food being passed out and I didn't have anything, I at least had those Cambrook cookies to fall back on.

SPEAKER_00

We have the same exact setup. Daddy has a box of Canbrook cookies and a box of uh gluten-free donuts at the ready, um, held in the nurse's office in the event that there's an emergency uh uh party.

SPEAKER_02

But the last thing that my parents were going to allow was to have any social interactions changed on me due to having PKU.

SPEAKER_00

So I think it's also a perfect illustration there, Meredith. Yeah. That it involves a little bit of planning, a little bit of preparation, but as long as you take the time as a parent and and as a school to work together and and plan and prepare, you really can provide a very uh comparable experience for a kid with a metabolic condition. And and it really does just involve taking a couple of extra steps than what's normally done.

SPEAKER_02

And not every single time it's gonna be easy, because trust me, there's always gonna be those days no matter what. But at least there's those cookies in the pantry.

SPEAKER_00

Have there been days where I have had to run home from work to prepare a gluten-free uh uh Canberra cupcake um for my daughter for the birthday happening at two o'clock and then run back to work? Yes, there have. Those days are unavoidable. Um, but we try to minimize them, we try to make it as seamless and as stress-free for everyone as possible.

SPEAKER_02

Yes, exactly. So I think that's definitely an experience that everyone has had with being in this community. But there's also the Cambrook school kits now that Cambrook is offering. And that's great for anyone who's starting school or possibly daycare if they're a little younger, just to be able to start thinking about these things. And maybe you don't need to sign up for the Cambrook program right now, but at least you know it's in the back of your head or uh 504 IEP, like you're gonna be talking more about. But just so you have this information, you might not want to sign up for it right away, or maybe you're like sign me up before the first day of school, but you have all the information, and there are resources that are here to help you throughout Cambrook as well. So if you want that information, you can also get that information in the link below and request one of those school kits.

SPEAKER_00

And what I advise to all parents is the more prepared you are, the better. So this is something that you want to really start pushing with your school, like the end of the school year before your child starts kindergarten. So don't be like, oh, it's June, everybody is gone for the summer. The people that prepare these plans and create the stuff, there's always someone working year-round in a school district. And so you establish all of that over the summer so that day one, your your child goes into the school and they are, you know, prepared for everything. So, you know, get that school kid earlier than you may think so that you're able to disseminate that information and be prepared uh as soon as possible.

SPEAKER_02

So we've already touched on some terms such as the 504 plans and the IEPs, but just for the audience to at least be aware with what we're talking about, and so we can just clear the air, what exactly is a 504 plan and an IEP? And how are they able to be applied to children with metabolic disorders?

SPEAKER_00

Absolutely. Um, that's a really good question, and and one I get a lot from parents. Um let's start with a 504 plan because that is the the plan that casts the widest net. A 504 plan is a federal piece of legislation that's overseen by the Office of Civil Rights, and that is appropriate for any child with a disability that substantially limits a major life activity. And PKU is one such example of a disability that can limit a life activity, um, you know, because you have significant nutritional requirements as a result of your condition. And basically, it's a plan that where you need accommodations for equal access to your education. It's not about providing a different learning environment from a special education teacher, it's just about access to the education. It there's no goals associated with a 504 plan, there's no progress monitoring associated with a 504 plan, there's no specialized instruction. It is just accommodations for access. So, specifically in the case of a child with a metabolic disorder, my daughter needs access to her formula, and she needs access to a refrigerator to store that formula. She needs access to low-protein meals, she needs access to um having a deeper understanding of when and how food is going to be served within the school day. So, because none of that really speaks to an educational accommodation, that's all done through a 504 plan. 504 plans apply to any school that receives public funding. Um, and and because there are no goals associated with it, there's no progress monitoring, there are fewer safeguards, but it's also there's a wide range of what you can put on it. Um, an IEP is for a child with a educational need. There are 13 classifications, we're not going to go into all of those, but basically a student must fit into one of these 13 disability classifications to be eligible for an IEP. Now, an IEP can do everything that a 504 plan does, but also you can add more things. Um, you can provide specially designed instruction, not just accommodations. So children can be in an integrated co-teaching class or an inclusion class. I don't know if you've heard of these models, or a class with a small number of students that's led by a special education teacher. In addition to all of those food-based and building access accommodations. Um on an IEP, you have measurable annual goals, there's progress monitoring throughout the year, and because of that and some other pieces of legislation that are involved in an IEP, there is much more oversight and scrutiny in an IEP. There's more procedural safeguards. Um, all public schools have to provide eligibility criteria for an IEP. And the only other thing is they are required to have annual meetings with an IEP where we review it and make recommendations for next year. Now, for a child with PKU, a 504 plan or an IEP are very appropriate. Um, most students with PKU who are academically successful really only need a 504 plan. But an IEP may be appropriate when PKU-related learning, such as executive functioning deficits or cognitive delays, require some sort of specialized instruction. If you need the specialized instruction, we're really in the realm of an IEP.

SPEAKER_02

Yeah, that makes sense. I will say I had both the 504 and IEP. We noticed that we added that IEP when I was struggling more in the afternoon classes. But as soon as I was able to have my formula throughout the whole day in school, I was succeeding perfectly in the afternoon classes because after that lunchtime, I was hitting like that wall because I haven't had formula when I was needing it, like the extra ump throughout the rest of my day. So once we added the formula, being able to be at my desk with me in whatever type of cup I liked, that ended up making it sound like I really only needed the 504, but they did have the IEP there in case I needed it as a fallback.

SPEAKER_00

Well, there's actually a lot to unpack there, and that's really good information. Some school districts will do both. You don't need both. You everything that's on a 504 plan can be on an IEP.

SPEAKER_02

Okay.

SPEAKER_00

But that doesn't mean you can't have both.

SPEAKER_02

Yeah.

SPEAKER_00

So so you can have the 504 plan for all of the PKU related accommodations and then the IEP for just the academic supports.

SPEAKER_03

Yeah. That makes sense.

SPEAKER_00

Both both are legally enforceable documents. That's the most important thing to remember.

SPEAKER_03

Yeah.

SPEAKER_00

Both are essentially contracts that you take between you, your parents, and the school district saying, here are the things that we're going to provide uh for your child throughout the school day. Um and and also, interestingly enough, you you raised another good point about these PKU-related academic deficits. Your afternoon classes were just a greater struggle for you, and you had what I'm assuming is some sort of academic impact as a result of that struggle. Um, because you weren't getting the appropriate access to formula at that moment, but you figured it out. The school accommodated you by giving you access to your formula in the afternoon at the time that you needed it, um, even though that may not have been a time that's typically where a student would, you know, exit from class and and go have a snack. Um, you know, at the secondary level, that becomes uh a greater concern. You can't just leave afternoon classes and and have a snack or have a formula break, but you needed that to access the services correctly.

SPEAKER_02

Yeah. There were even some teachers that wouldn't even allow drinks in the classroom. Sure. So that's where I was working with was just being able to have that cup at my desk. Sure. So I wasn't even needing to exit. So that could even be considered one of the accommodations, is just having a cup at your desk.

SPEAKER_00

That is a perfect example, Meredith. You know, the idea is look, every teacher, for better or worse, runs their classroom the way that they want to. I don't necessarily agree with a teacher not allowing drinks in the classroom, but if that is their prerogative and that's how they educate the best, go ahead, let them do it. But there are always going to be some students that need an accommodation. Accommodation that may run counterintuitive to how a teacher wants to run their class. And that's where the 504 comes into play. Once it's written in there as an accommodation, it's enforceable, and that teacher really doesn't have a choice. They they they if they were to not allow you, they would to do that. They would be breaking the contract set forth in that 504 plan or that IEP.

SPEAKER_02

Yes. Well, that is a great way to send off the next question I have for you. What do you think are the best examples or effective accommodations for a child with a metabolic disorder during the day? Or maybe what is something that Addy has experienced with her accommodations that she values the best?

SPEAKER_00

You know, the best accommodation is something that evolves as your kid grows through the school year, um, through the through K through 12. In kindergarten, we're really focusing on making sure that your child has appropriate access to food, making sure that your, you know, four or five-year-olds are curious, they don't necessarily know the ins and outs of what they can and cannot eat safely. So you also want to make sure that there's some stricter level of supervision surrounding food events for your child when they're entering school. Um, and you want to make sure that the food is that's not being eaten is coming back for appropriate planning. You know, I'll speak specifically about Addy. She had a she still has a fairly low tolerance for fee. So we had to, particularly when she was young and before she really started responding to her medication, um, we had to very strictly regiment her diet. So that means half of an uneaten sandwich could, you know, really change what we give her for dinner that night to make sure that she hits her fee targets. So we had to make sure that any uneaten portions of food were appropriately wrapped and sent back home with us. We had to make sure that she was not sharing her food with any of her peers, as you know, a typical kid, we would expect them to do. We have to make sure that she's not sneaking a bite of something off of someone else's plate. So one of the accommodations that we advocated for and she had for the first uh three years that she was in school was an aid during uh food service. So, so during snack time, during lunch, uh, during any sort of party where food was served, she had a an adult that was specifically assigned to her that would just make sure that she's only eating her food and that any uneaten portions um were returned home to us.

SPEAKER_02

So this was younger years?

SPEAKER_00

Younger years. This is K through two.

SPEAKER_02

Okay.

SPEAKER_00

Um also really important to advocate for early on, uh, refrigeration access for formula. You know, not every building logistically has the nurse's office close to the classroom. So, like again, where where my daughter went to school for elementary, the nurse's office was a pretty long walk for a kindergartner from her classroom. So to store the refrigerated formula there was cumbersome and not really not really feasible. So there was a they provided a small refrigerator for the classroom for her to store her formula in. Um and and you also want just access to low protein foods. So those are the the three things that I always recommend parents advocate for in the beginning. Um adult supervision during food, uh during any sort of food event, um, access to formula, appropriate refrigeration, and access to formula throughout the day, um, and provision of low protein foods by the school. Um as Addy's gotten older, of course, she doesn't, she no longer needs a one-to-one aid or you know, provide me making sure that she's not eating her food. She knows uh what she can and cannot eat now. So that that became less of an issue. So we withdrew that support. Um and really now it is mostly about food preparation, provision of low-protein food, and access to breaks for formula. Now that she's in middle school, you know, you're switching classes every 40 to 50 minutes, you want to make sure that that child is still able to be excused from class to go have some formula if she needs it, or to be able to carry it with her throughout the day without any sort of issue from any of the teachers. Um, as kids get older, you know, beyond Addy's years, but kids that I've talked to and worked with uh, you know, uh outside of my own daughter, kids may need provisions on testing after a while. You know, executive functioning deficits can become more pronounced as a child ages. And, you know, if they start maybe experimenting with their diet a little bit more than maybe they should, um, and they experience some sort of brain fog or or they experience some executive functioning deficits associated with PKU. Even well-managed PKU can have executive functioning deficits. Um, it's not necessarily due to food experimentation, it really can just be the course of development. Um, you may want to advocate for extended time on tests, testing in a location with minimal distraction, uh, extended time for homework assignments. These are all very appropriate things that you could ask for in a 504 plan based on the deficits that a person with PKU can have.

SPEAKER_02

Yeah, for sure. I think that's very, very informational and some good notes for parents to take. But what do you think about when parents should start placing these accommodations or asking for these um 504s or IEPs to start? And who should they start speaking to first for this to be implemented?

SPEAKER_00

You know, the the earlier the better. So as soon as your child is entering the school system, that's when I would be advocating to start a 504 plan. Something that I share with parents all the time is because these 504s or an IEP, they're I I think I said it already, they're contracts that you have with the school district. Assuming, you know, PKU isn't going away. So assuming that your child is going to need some form of accommodation, K through 12, you're talking about 13 years of contract negotiation with your child's school. You you want to establish the need early. You want to show them that you take this seriously, that you are going to be an advocate for your child, and you want them to be accustomed. There is a learning curve. Most school districts, uh, I mean, I again I'm speaking personally now, not a single person in my daughter's school district had even heard of PKU before they met Addy. And and because they were talking about really rare metabolic conditions, these are like once, sometimes twice in a career students that that most people in a school system are going to encounter. So earlier the better. And just open, be open and approachable with these people because you are going to be working with them for a long time, uh, whether you like it or not. Um the other thing that I tell parents to keep in mind is accommodations on a 504 plan or an IEP are reactive, not proactive. So the need has to be there before you put it on the plan. You know, the idea is we know coming in, children are going to need access to formula. That's that that's a given. We know they're going to need access to low-protein food. That's a given. We know they're going to need to track what food they're eating. That's a given. So these are things that you're very comfortable advocating for immediately. But if you're talking about extra time on tests or extra time for assignments or things like that, you need to demonstrate a need for that first. You know, I'm a I'm a fortunate dad. Addie is quite gifted academically. She doesn't have a need for extra time on tests or things like that yet. But I don't have a crystal ball. I don't know how PKU is going to affect her brain in the future. But I know that if we are seeing an effect, if we are seeing, you know, a decline in executive functioning or the ability to manage all of the work streams that that come about your way as you go from middle school to high school. Um, I know that I would be on very safe ground to advocate for those kind of accommodations for her because we have well-documented proof that that these are common things that kids with metabolic disorder struggle with.

SPEAKER_02

Absolutely. And that's a great point. I know you mentioned also the schools might be unfamiliar with specific metabolic conditions, so they might seem hesitant possibly. But how can parents advocate efficiently for their child whenever the schools just like put up those warning signs and they're like, what is going on? What is this? What is PKU? Like, what is happening?

SPEAKER_00

I've personally encountered this too, and I'm certain that everybody out there listening can can relate to this. You know, school school people look at Addy and they go, She looks fine.

SPEAKER_02

Yeah.

SPEAKER_00

Everything looks great. What are you talking about? What's wrong here? There's nothing wrong here. She's got two days.

SPEAKER_02

She's fine.

SPEAKER_00

And then it immediately makes them less inclined to, you know, consider and provide supports. Yeah, it's part of the reason why I said start as early as possible. You know, uh my school district is very small, so I have one person that manages all 504 plans kindergarten through 12th grade. And so I'm I'm hoping that this one person stays employed by my school district. I mean, for the duration of Addy's time there. She's she's going into sixth grade, so I've made it halfway. Um, but but it's great because I have this one professional within the district that has been creating and modifying and and reviewing Addy's 504 plan for six consecutive years now. And so we have developed a really nice shorthand. Um, and and if I see anything going on or if I need some clarification, I know that I can just reach out to this person and they will give me immediate feedback and we can work together. But that's a working relationship that we've established over half a decade at this point. And that's why I think it is important to just be open, be honest, educate as early as possible possible about what PKU is or what your child's metabolic condition is, what their needs are, what you're going to see immediately, and what you could see in the future.

SPEAKER_02

Absolutely. Well, with this all being said, we have a very special, extra special guest that's coming in, who's dear to my heart. Addie is going to be joining us, but before that, Eugene, could you please share with us what it's like to be a parent in this situation, seeing your child get the support in the right way at school?

SPEAKER_00

Oh boy. Um, I'm not gonna get emotional. You know, I I kind of tying back to your first question. I've spent my whole professional life, my whole adult life in education, and to have the opportunity to put this knowledge to use for my own daughter. And and then not only that, but to see her truly thrive and to see her feel very comfortable in her skin, feel very comfortable with who she is, feel very supported and nurtured in that school environment where we do have to just let them go. And and, you know, you can prepare as much as you you possibly can, but ultimately you're gonna be letting them go and hoping for the best. Um, and to see that she feels very supported by the adults, she feels very comfortable around her friends. Um, and and in some small part, it's because of the work that myself, that my wife, um, and that the school district has done, it's it's the most rewarding experience a parent can ask for. It is it's like this true. I talk about this a lot too, the a real culmination between my family life and my professional life, and to see it put to something so good for you know my daughter is is just I could never even begin to describe it. It is it is just a a real point of pride and a real source of joy to see her um be this successful.

SPEAKER_02

All right, and we are back with our special guest, Addy. Hello, Addy. How are you? I'm good. Good. How old are you? I'm 10. And what grade are you going into? I'm going into sixth grade. That's exciting. Are you excited? Yes, I'm very excited. Good. But for now, we're gonna enjoy some summer, right?

SPEAKER_00

Yes, well-deserved. Well-deserved summer.

SPEAKER_02

There we go. Well, we do have some questions for you today, Addy. Thank you for joining us first off. It is great to have you. I've been talking with your dad a little bit, and I already know how special of a person you are, but now we have to share with the crowd. So, can you tell us a bit about your school days and how your accommodations help you feel more comfortable and competent while you're at school?

SPEAKER_01

So there's like two key parts of my school day. There's the beginning and there's lunch. So those are the parts really where I need to like I want to say like plan it out in my head because in the beginning of the day, before homeroom starts, I have to go to the nurse and put my formula into the little fridge they have there for like EpiPens and like anything really for a 504. So in the beginning of the day, instead of we have a fifth grade entrance where the fifth graders enter, and then the main entrance. I I could go through the fifth grade entrance and drop off all my stuff, but I find it easier in the morning to just go through the main entrance because the nurse's office is right there. So every morning I'll go through the main entrance and drop off my formula, and like that's part of my 504. Like, my formula can't be like sitting in my locker, it needs to go to the nurse every morning. Okay, that's good to know. Yeah. You prefer whole formula, right? Yeah. I mean, to me, when it's warm, it kind of tastes gross. Yeah, makes sense. For the second paper, we have lunch. Okay. And lunch is where I pick up my formula again. Where I need to go back to the nurse's office. And at our school, it's like fine if you're late to lunch. Like, lunch is in an important period, so you can be late. And like at lunch, all my friends are super supportive, and they know that like I have my stuff and like I have different food to eat. So like it's nice to have friends that like know what's going on. Because you know, if I didn't, it'd kind of be weird.

SPEAKER_00

And when do you get hot lunch from school?

SPEAKER_01

Um, I have like a little lunch schedule. So Monday, Wednesday, and Friday, I get hot lunch, and Tuesday and Thursday I bring in my own lunch. That sounds like a great plan. Do you like it? Honestly, yeah. I mean, there has been some times where like they've given me food I don't really like, such as corndogs. Okay. Which I'll eat them. I'll I'll eat them. There's nothing wrong with corn dogs. I'll eat them. But not a favorite. Not a favorite, yeah. And like my school party, like, this was an example. Like, my school party, I had bagels at my school party. So I brought in my own bagels, I brought in my own sugar cookies, and I brought fruit for the whole class. There's another girl in my class with a 504 plan, she's lactose intolerant. So we're friends. Okay. Like I mean, it's it's really nice, but it was a problem because guess what they gave me for lunch?

SPEAKER_03

Why?

SPEAKER_01

Bagels. So this is where the corn dog comes back. Yay! But um I don't it was just not fun because I had to suffer through not eating a full lunch or having something that they didn't cook right and wasn't my preference.

SPEAKER_02

Yeah, I definitely agree with that. There's times where you have to let the cafeteria people know how to cook certain foods. Because let's be honest, sometimes it's harder to cook low pro foods. Even I have this funny debate still today with my husband. I have to put more water in the pot to boil these noodles than regular noodles because they're gonna get sticky.

SPEAKER_03

Yeah.

SPEAKER_02

So it's gonna take boil. But cooking low pro is harder. So sometimes even you, Addy, as this now sixth grader, know how to cook better than cafeteria workers.

SPEAKER_00

But some things they used to tell me they make better, like you say they make the toasted pierogies better at school than I do.

SPEAKER_01

Things like there's like one or two foods that I like better in the cafeteria than how my dad makes them.

SPEAKER_00

Yeah, and I take that very personally.

SPEAKER_01

It's it's weird. Come on, dad. Why would you take that personally? Of course you are. But um it's like I don't want to say checks and balances, but I want to say like there's some sort of balance there that makes me okay with them making some foods eh and other foods ooh. Like, ooh, I like this.

SPEAKER_02

I think there's good and bad in everything, and so this just proves that part of PKU has some more struggles, but some pretty good things with it too. Exactly.

SPEAKER_00

That's true, that's very true.

SPEAKER_02

And I think your dad as a psychologist could agree.

SPEAKER_00

I a hundred percent agree as a psychologist and a dad.

SPEAKER_02

I could tell there's also some law in your family.

SPEAKER_00

That's it.

SPEAKER_02

Yes, that's it. I know that too. All right. Well, I wanted to ask you what's the best thing about having PKU at school? And is there anything you wish could be a little bit different or easier?

SPEAKER_01

Honestly, there's literally only one thing that I think I wish could be different. I wish, like in elementary school, because this is my first year in middle school, in my school, fifth grade to middle. So in elementary school, they like recently just changed this. My elementary school teacher had a mini fridge in her classroom, so I was able to just walk to class and put my formula in there. I feel like it would be less time consuming and less harder for me to just be able to like plop it in a mini fridge, which is what I had in elementary school.

SPEAKER_00

And that's actually a perfect example of you know, 504 plans have to evolve based on the building. We would have loved that, but with Addy's schedule in middle school, the mini fridge would be in her homeroom class, and it wouldn't necessarily be the easiest to drop it off and pick it up in homeroom. The nurse's office was the best choice given what we had, but it's still not ideal like it was in elementary school.

SPEAKER_02

So, what if we brainstorm an accommodation right now of bringing that aid back from kindergarten and make her have to run and do your errand of getting formula back and forth?

SPEAKER_01

I I do it was easier back then because like kindergarten that's like basics. And she like kindergarten was a weird year for me because of COVID. So we had like dividers, and it would like classes would eat lunch in their class, so she would go get my food for me. But obviously, we have a cafeteria now. Like where we eat but it it'd be much easier to have an aide to go and do that in the morning. Yeah.

SPEAKER_00

I'm sure it would be. But the flip side of it is you need to learn how to start doing this stuff independently, and we already know that you can.

SPEAKER_01

And it's don't get me wrong, it's not hard. It's not like My homeroom teacher's like, oh, you're late, what's wrong? And I'm not late. I've I've never really been late. But it's it's just harder because I feel like I'm the last one showing up to class.

SPEAKER_00

Well, and I also think it's harder because it's just different.

SPEAKER_01

Yeah, it's it's different. He he my dad has a point, but it's also like it feels weirder because in homeroom we have work to do. We have like morning work. So there there were some days where I just wasn't finishing that because I was at the nurse's office. And obviously, it's just like it's like stuff in the Chromebook, stuff in the computer. So my teacher's like, it's not that big of a deal, but it'd be nice to still have that extra time.

SPEAKER_02

Yeah, makes sense. Well, with that, let's end on a high note. What's your favorite part about having PKO?

SPEAKER_01

I I honestly like how everybody's so kind about it. It's not like I'm getting treated differently. It's like I'm I'm a human being at school. I'm this I'm just a person. There's nothing different about me. But it it's like when when I did my presentation in elementary school about PKU, I feel like I got like weird looks almost from other children in the school. And they were like, You have to because like it's like medical formula, so they were like, you have to think formula, like a like a baby. Exactly. We all hear it, Addy. We all know and and they were just like, So are you a baby? And this was like first grade, and I was like, Why would I be a baby? Yeah, and like it's I don't want to say it's offensive because they're first graders, but I want to say it's a little weird. Yeah, because to me this is normal, but to them this is like a whole different thing. Yeah. But now that we're I don't want to say now that we're all older.

SPEAKER_00

Well, you are older.

SPEAKER_01

Now that now that we're all like middle schoolers, yeah. Now that we all have like a different mindset about it, I feel like they're treating me more normally, and I feel like I don't stick out anymore. And that's good. It's it's honestly nice because a lot of people are like nice to me about it, and if they have questions, they have questions, and that's a good thing. I like answering questions, and it just makes me feel happy knowing that like people know and that they care about it.

SPEAKER_02

Absolutely, and I think it's very awesome being in the PKU world because like you said, you have another friend with accommodations, and I have a friend with accommodations, and that friend even became my bridesmaid. So that friend that you have accommodations with could stick with you forever.

SPEAKER_00

You never know.

SPEAKER_02

And I think something pretty awesome about having PKU is you make a lot of relationships with people, whether that's at events or conferences or podcast episodes. Hey. Or you meet this little girl at a conference and then she paints you a picture.

SPEAKER_00

Oh you still have it. Oh, you still have it. Oh my god, I love it.

SPEAKER_02

Oh that was when you helped me with the finger prick. So for the people who do not see the video happening right now, I'm holding her that Addie painted me two years ago of a blood draw finger prick that I helped her do. But she painted me a photo. So connections in the community are everything, right, Addy? Yes.

SPEAKER_00

And that's another cool thing. We've traveled the country now. We're going all over the place.

SPEAKER_01

It's like Oregon, Washington, it was Atlanta. Atlanta. That was when I was little. You were baby. I was very little in Atlanta. Yeah. That was it's it's so much fun because I have friends from like Kentucky and Buffalo, like all across the world, that one simple thing we connected with was PKU. And it it's just an amazing feeling.

SPEAKER_02

And another best part is we're all able to connect at least on one thing, and that is we all start from the same place, having to do the formula, having to do the diet, and always having to do the blood spots, no matter what treatment you're on, no matter what protein tolerance or fee tolerance you have, or where you're at, you know, I'm pricking my finger, you're pricking your finger, we're going to labs and we're living the same lab.

SPEAKER_00

Oh boy, are we. We're going to labs tomorrow, actually.

SPEAKER_02

Oh.

SPEAKER_00

Kicking off the 4th of July weekend with a nice blood draw.

SPEAKER_02

Yay. Hey, red, white, and blue.

SPEAKER_00

Extra red. That's a good one. Extra red for you.

SPEAKER_02

Yes. Hey, we're going to there we go. Well, thank you so, so, so much, Addy, for coming on. I appreciate it. You were our star. And I have a couple more questions for your dad. You're welcome to stay here or disappear. You choose. Whatever you like. But up to you. In the meantime, Eugene, as children grow from preschool through high school and beyond, how do their needs for accommodations evolve over time? I know we've touched on this, but being able to just change and grow as the accommodations also change and grow, what are your thoughts on that?

SPEAKER_00

Well, I think it evolves from need for supervision, like, you know, making sure they're not eating foods that are inappropriate, making sure that they're managing the diet correctly, it evolves from that to just advocating for assistance. Um, you know, 504 plans are something that could follow uh a person through K through 12, into college, throughout their adult life. You know, if they work in a federally funded uh work environment, you can have a 504 plan as an adult in your in your job. Um, mandating access to formula, to low protein foods, breaks for meals, um, the idea of uh text presented in different modalities, you know, again, for the think of the executive functioning deficits. Um, so the idea is uh it evolves from supervision to just need for access to those kinds of things that that an adult is gonna advocate for on their own. But I think it is important to acknowledge you can carry a 504 plan through from kindergarten to when you retire. Um if you if you work in the right environments and advocate.

SPEAKER_02

Addie and I are gonna be old ladies with our 504s.

SPEAKER_00

Old ladies with your 504 plans. I'm here for it.

SPEAKER_02

All right. Well, that's good to hear too. Also, it's not something that I've realized, I don't think, that as an adult working now, I could have a 504 still at work. I know I was able to have the accommodations follow me in college, but that is very interesting. Very interesting. Thank you for sharing that. And if there's one thing you'd want parents listening to take away about school support, metabolic conditions, or anything that we've taught touched on, what would that be?

SPEAKER_00

I think it's that it seems very daunting at first, especially look, sending your kid to kindergarten is a daunting, overwhelming experience, even for a kid with no metabolic condition. Um it is an added layer of stress and complexity when when we're talking about like our little PKU babies. Um But with a little patience and a little persistence, even if the school is not fully on board at first, you can really get the the accommodations that your child needs and and to set the stage to help them thrive.

SPEAKER_02

Thank you, Eugene, for joining us today and for sharing your insight and experience as both a psychologist and parent navigating PKU in the school system. It's been really valuable to hear your perspective on what meaningful support can look like in practice. And of course, a big thank you to Addy for joining us too. Sharing a glimpse of what it's like to be at school a day in your life. It's been wonderful to hear directly from you and how support can make a real difference day to day. But now is the fun part, and it's time for our community questions. In this segment, we'll ask questions you have submitted, giving us a chance to explore our guests' story from the new and personal perspectives. Our questions today are from registered dietitian Rebecca Jennings. So here we go with the first question. Are you ready?

SPEAKER_00

I'm ready.

SPEAKER_02

All right, here we go. How can parents effectively prepare teachers, school nurses, and other staff who may have little or no prior experience with PKU?

SPEAKER_00

The answer is advocate and educate as early as humanly possible. So if you're if you have a child with PKU that is starting kindergarten for the uh 26-27 school year, right now is the time to start sending materials over to the school. Schedule team meetings with, at the very least, the school nurse, the building principal, maybe even the school mental health team, the psychologist, the social worker. Very often it's one of those four, or it could be all four of them, that sit on 504 committees that create these 504 plans. Um so they're the stakeholders that you're gonna want to educate on. What is PKU? What are the needs? Where um where do we expect to see an immediate need, and where may we see needs in the future by the time this child leaves elementary school? The sooner you do it, the more persistent you are, the better.

SPEAKER_02

Sounds good. This next question I think is a great one, considering we have seen this in action with Addy, being such a good advocate for herself. So, as children grow older, how can families help them develop self-advocacy skills needed to explain PKU, manage their diet, speak up about their needs in school, or anything that might be happening?

SPEAKER_00

I think it's really important to normalize the experience as early as possible. So, I mean, I remember when Addy was a baby, us having conversations with her that this is what you eat for dinner, this is what the meat eaters in the family eat for dinner, and it's okay that we have different plates, and it's okay that we have different things. You know, Addy has an older brother who has his own growing boy nutritional needs that we have to meet as well for him. And and his nutritional needs look very different from Addy's, and that's okay. Um, and from an early age, teaching your child to the best of their ability to manage their food and their diet independently. And that means at first just having them be a part of making formula, weighing out food, planning a meal, even if they're not participating in any meaningful way, they're watching you and they're learning from you. Um I I'm gonna share a real proud dad moment from yesterday. Oh recently. Yesterday it was um my wife's birthday. Okay, two days ago, I apologize. Two days ago is my wife's birthday, and we were out to dinner. Um, and Addy ordered off the menu completely by herself and shared with the the wait staff. I have a I have dietary restrictions, I don't have a food allergy, I have just restrictions, so this is what I would like to eat. And she ordered herself a salad with all the vegetables that she likes and a plate of French fries all by herself. I did not help. I couldn't have been more proud. That's amazing. And part of it is just, you know, we've modeled for her from a very early age how to do things like order in a restaurant, look at a menu, and identify the things that are there that you would want to eat. Um, and and explain it to the wait staff appropriately. So this is a real ten years in the making moment. Of course you could say something.

SPEAKER_01

So, um, like like he was saying, like, when I was little, I would watch him weigh out my formula powder, and it's been like I've had the same breakfast for like my whole life, like a scoop of biscuff and Cheerios. So this year was like the first year I actually learned how to like do this independently, like totally. I've been for like almost the whole year calculating my fee, doing my breakfast, and he would he would obviously help me, and so would my mom. They've they've both been amazing, like my whole life. They've helped me do everything. And generally this morning, I made my own formula, yeah, and I made my own breakfast, and it's I'm proud to say it's becoming a bit more natural.

SPEAKER_00

Yeah, yes it is. But but but that is the answer is practice, practice, practice. Don't be afraid to let your child participate or at least observe at their appropriate level for their age and for their ability. Um, and and slowly but surely they're gonna they're gonna take the mantle, they're gonna do it all on their own.

SPEAKER_02

There we go. Okay, now I have an added community question from myself to Addy. What is your favorite part about being your own advocate?

SPEAKER_01

Oof. I have a lot of being my favorite advocate. I mean, I like that I can feel independent, and I like that I can feel I don't need to like rely on anybody. I can rely on myself. That's a perfect answer for her.

SPEAKER_00

That's a good answer. I'm not gonna lie. 10 out of 10.

SPEAKER_02

Good job. That's it for our community conversations. If you want to include a question in future episodes, keep an eye on my social posts, and I'll regularly ask for your input from our community. Before we wrap up, our aim is to make this podcast feel relevant to the whole metabolic community. As the series grows, we'll be exploring a range of conditions, including upcoming conversations on disorders like tyrosinemia, along with topics that connect across different metabolic disorders. If there's a topic you'd like for us to cover, or a guest you'd love to hear from, please keep in touch. Finally, remember that you can find helpful resources as well as all information from Eugene in the show notes below. Thank you for listening and we'll see you next time. Bye. That's it for today's episode of Metabolically Speaking. Rare conditions, real stories, and a reminder that life with a metabolic condition is about living, not limits. If today's episode resonated with you, share it with someone who might need to hear it. And if you have a moment, please leave us a review. It helps others find their way here too. We'd love to hear from you. If you have feedback, a story to share, or a question, send us an email. Find the address in the show notes below. And make sure to subscribe to Metabolically Speaking on your favorite podcast platform and tune in each month to join your tribe. Breaking barriers and living without limits. Thank you for being here, and we'll see you next time.