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Starting school is a significant milestone for any child.
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But when a rare metabolic condition like PKU is part of the picture, it could be added layers of uncertainty.
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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.
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In this episode, we're joined by Dr.
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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.
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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.
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Together, we explore how accommodations can support well-being and academic success, what parents can do to prepare, and how needs evolve over time.
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We're also joined by a very special guest, Eugene's daughter Abby, who shares her own experience of school life with PKU.
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Welcome to Metabolically Speaking, the podcast that dives into life with inherited metabolic conditions.
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Privately brought to you by Cambrook, delivering therapeutic nutrition for more than 25 years and empowering families to live without limits.
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I'm your host, Meredith Baker.
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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.
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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.
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Whether you're newly diagnosed, supporting someone you love, or have been on this journey for a while, this space is for you.
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So settle in and let's get into it.
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Joining me today is Dr.
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Eugene Loveliner.
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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.
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He has extensive experience working with families and schools to support children with additional learning and developmental needs.
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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.
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Eugene, thank you for joining us.
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We're so happy to have you here with us today.
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Thank you, Meredith.
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I'm happy to be here.
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Really happy.
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Of course.
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It's gonna be great.
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Let's get started.
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We have some very valuable insights to explore today, and I cannot wait to hear more from you.
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So, with that, the first question is directed towards you.
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I know your daughter's gonna be joining us, but you've spent over 15 years helping families navigate the school system.
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And then your perspective became more personal when your daughter Addy was born with PKU.
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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?
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Absolutely.
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Um, I was a psychologist for eight years before we had Addy.
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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.
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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.
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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.
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It really just changes how you interact with the students that you work with professionally.
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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.
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Yeah, it definitely adds a more personal experience and touch to what you're already working on.
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So I'm sure you felt more dedicated as time goes and continues to go as it is.
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Without question, it's it's it's it's a very rewarding experience.
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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.
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And I I experience it personally day to day.
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Yeah, you see the difference you're making now by just seeing others doing it for Addy.
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Absolutely.
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Absolutely.
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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?
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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.
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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.
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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.
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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.
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That definitely makes sense with what age group we're also talking about.
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So, why can schools be particularly challenging for children with metabolic conditions, not just medically, but also socially and academically?
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Oh, sure.
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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.
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Most schools allow food celebrations for birthdays, for holidays.
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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.
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They can't eat the munchkin that that a parent decided to bring in for Thanksgiving.
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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.
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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.
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They don't have to participate that way in the school day.
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It's much more natural and easygoing.
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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.
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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.
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You're not gonna be able to prioritize the work as effectively because of those executive functioning deficits.
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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.
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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.
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So when she has uh when it's pizza day at the cafeteria, she has her own cheese pizza.
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When it's chicken nugget day at the cafeteria, she has her own veggie nuggets.
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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.
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It allows her to just have that shared experience that all the other kids in the cafeteria are having.
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We also address it through 504 accommodations.
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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.
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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.
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Of course.
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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.
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Oh boy, you had the trifecta.
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Yeah, oh me and Addie team.
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But but with all of that, that did really help support the social aspect and the health aspect of having PKU.
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I think it was very, very important to still be able to have every social interaction that everyone else was having.
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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.
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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.
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Yep.
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And so the school could order the Cambrook cookies and just stash them.
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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.
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We have the same exact setup.
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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.
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But the last thing that my parents were going to allow was to have any social interactions changed on me due to having PKU.
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So I think it's also a perfect illustration there, Meredith.
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Yeah.
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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.
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And and it really does just involve taking a couple of extra steps than what's normally done.
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And not every single time it's gonna be easy, because trust me, there's always gonna be those days no matter what.
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But at least there's those cookies in the pantry.
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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?
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Yes, there have.
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Those days are unavoidable.
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Um, but we try to minimize them, we try to make it as seamless and as stress-free for everyone as possible.
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Yes, exactly.
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So I think that's definitely an experience that everyone has had with being in this community.
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But there's also the Cambrook school kits now that Cambrook is offering.
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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.
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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.
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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.
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So if you want that information, you can also get that information in the link below and request one of those school kits.
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And what I advise to all parents is the more prepared you are, the better.
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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.
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So don't be like, oh, it's June, everybody is gone for the summer.
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The people that prepare these plans and create the stuff, there's always someone working year-round in a school district.
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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.
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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.
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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?
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And how are they able to be applied to children with metabolic disorders?
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Absolutely.
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Um, that's a really good question, and and one I get a lot from parents.
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Um let's start with a 504 plan because that is the the plan that casts the widest net.
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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.
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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.
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And basically, it's a plan that where you need accommodations for equal access to your education.
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It's not about providing a different learning environment from a special education teacher, it's just about access to the education.
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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.
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It is just accommodations for access.
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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.
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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.
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So, because none of that really speaks to an educational accommodation, that's all done through a 504 plan.
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504 plans apply to any school that receives public funding.
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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.
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Um, an IEP is for a child with a educational need.
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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.
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Now, an IEP can do everything that a 504 plan does, but also you can add more things.
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Um, you can provide specially designed instruction, not just accommodations.
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So children can be in an integrated co-teaching class or an inclusion class.
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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.
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In addition to all of those food-based and building access accommodations.
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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.
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There's more procedural safeguards.
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Um, all public schools have to provide eligibility criteria for an IEP.
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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.
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Now, for a child with PKU, a 504 plan or an IEP are very appropriate.
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Um, most students with PKU who are academically successful really only need a 504 plan.
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But an IEP may be appropriate when PKU-related learning, such as executive functioning deficits or cognitive delays, require some sort of specialized instruction.
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If you need the specialized instruction, we're really in the realm of an IEP.
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Yeah, that makes sense.
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I will say I had both the 504 and IEP.
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We noticed that we added that IEP when I was struggling more in the afternoon classes.
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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.
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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.
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Well, there's actually a lot to unpack there, and that's really good information.
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Some school districts will do both.
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You don't need both.
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You everything that's on a 504 plan can be on an IEP.
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Okay.
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But that doesn't mean you can't have both.
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Yeah.
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So so you can have the 504 plan for all of the PKU related accommodations and then the IEP for just the academic supports.
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Yeah.
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That makes sense.
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Both both are legally enforceable documents.
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That's the most important thing to remember.
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Yeah.
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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.
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Um and and also, interestingly enough, you you raised another good point about these PKU-related academic deficits.
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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.
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Um, because you weren't getting the appropriate access to formula at that moment, but you figured it out.
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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.
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Um, you know, at the secondary level, that becomes uh a greater concern.
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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.
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Yeah.
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There were even some teachers that wouldn't even allow drinks in the classroom.
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Sure.
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So that's where I was working with was just being able to have that cup at my desk.
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Sure.
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So I wasn't even needing to exit.
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So that could even be considered one of the accommodations, is just having a cup at your desk.
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That is a perfect example, Meredith.
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You know, the idea is look, every teacher, for better or worse, runs their classroom the way that they want to.
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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.
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But there are always going to be some students that need an accommodation.
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Accommodation that may run counterintuitive to how a teacher wants to run their class.
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And that's where the 504 comes into play.
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Once it's written in there as an accommodation, it's enforceable, and that teacher really doesn't have a choice.
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They they they if they were to not allow you, they would to do that.
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They would be breaking the contract set forth in that 504 plan or that IEP.
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Yes.
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Well, that is a great way to send off the next question I have for you.
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What do you think are the best examples or effective accommodations for a child with a metabolic disorder during the day?
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Or maybe what is something that Addy has experienced with her accommodations that she values the best?
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You know, the best accommodation is something that evolves as your kid grows through the school year, um, through the through K through 12.
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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.
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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.
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Um, and you want to make sure that the food is that's not being eaten is coming back for appropriate planning.
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You know, I'll speak specifically about Addy.
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She had a she still has a fairly low tolerance for fee.
00:23:35.839 --> 00:23:46.400
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.
00:23:46.720 --> 00:23:58.079
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.
00:23:58.400 --> 00:24:05.440
So we had to make sure that any uneaten portions of food were appropriately wrapped and sent back home with us.
00:24:05.599 --> 00:24:14.160
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.
00:24:14.400 --> 00:24:18.559
We have to make sure that she's not sneaking a bite of something off of someone else's plate.
00:24:18.720 --> 00:24:28.640
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.
00:24:28.880 --> 00:24:45.839
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.
00:24:46.160 --> 00:24:47.839
So this was younger years?
00:24:48.079 --> 00:24:48.559
Younger years.
00:24:48.640 --> 00:24:49.839
This is K through two.
00:24:50.240 --> 00:24:50.559
Okay.
00:24:51.440 --> 00:24:58.559
Um also really important to advocate for early on, uh, refrigeration access for formula.
00:24:58.720 --> 00:25:05.039
You know, not every building logistically has the nurse's office close to the classroom.
00:25:05.200 --> 00:25:16.079
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.
00:25:16.240 --> 00:25:22.160
So to store the refrigerated formula there was cumbersome and not really not really feasible.
00:25:22.400 --> 00:25:29.759
So there was a they provided a small refrigerator for the classroom for her to store her formula in.
00:25:30.160 --> 00:25:34.799
Um and and you also want just access to low protein foods.
00:25:34.880 --> 00:25:40.640
So those are the the three things that I always recommend parents advocate for in the beginning.
00:25:40.880 --> 00:25:57.359
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.
00:25:57.599 --> 00:26:06.640
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.
00:26:06.799 --> 00:26:10.000
She knows uh what she can and cannot eat now.
00:26:10.079 --> 00:26:11.920
So that that became less of an issue.
00:26:12.000 --> 00:26:13.920
So we withdrew that support.
00:26:14.160 --> 00:26:24.000
Um and really now it is mostly about food preparation, provision of low-protein food, and access to breaks for formula.
00:26:24.240 --> 00:26:44.480
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.
00:26:45.039 --> 00:26:59.359
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.
00:26:59.440 --> 00:27:05.440
You know, executive functioning deficits can become more pronounced as a child ages.
00:27:05.599 --> 00:27:18.400
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.
00:27:18.720 --> 00:27:23.920
Even well-managed PKU can have executive functioning deficits.
00:27:24.000 --> 00:27:30.559
Um, it's not necessarily due to food experimentation, it really can just be the course of development.
00:27:30.720 --> 00:27:40.880
Um, you may want to advocate for extended time on tests, testing in a location with minimal distraction, uh, extended time for homework assignments.
00:27:41.039 --> 00:27:52.400
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.
00:27:52.640 --> 00:27:53.680
Yeah, for sure.
00:27:53.839 --> 00:27:58.880
I think that's very, very informational and some good notes for parents to take.
00:27:59.039 --> 00:28:07.200
But what do you think about when parents should start placing these accommodations or asking for these um 504s or IEPs to start?
00:28:07.279 --> 00:28:11.119
And who should they start speaking to first for this to be implemented?
00:28:11.519 --> 00:28:14.960
You know, the the earlier the better.
00:28:15.200 --> 00:28:23.279
So as soon as your child is entering the school system, that's when I would be advocating to start a 504 plan.
00:28:23.519 --> 00:28:34.559
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.
00:28:34.880 --> 00:28:38.000
Assuming, you know, PKU isn't going away.
00:28:38.160 --> 00:28:50.640
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.
00:28:50.960 --> 00:28:53.680
You you want to establish the need early.
00:28:53.839 --> 00:29:04.400
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.
00:29:04.559 --> 00:29:06.000
There is a learning curve.
00:29:06.319 --> 00:29:17.039
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.
00:29:17.440 --> 00:29:32.000
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.
00:29:32.319 --> 00:29:34.240
So earlier the better.
00:29:34.480 --> 00:29:43.519
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.
00:29:43.759 --> 00:29:52.720
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.
00:29:52.960 --> 00:29:57.599
So the need has to be there before you put it on the plan.
00:29:57.920 --> 00:30:02.880
You know, the idea is we know coming in, children are going to need access to formula.
00:30:03.039 --> 00:30:05.119
That's that that's a given.
00:30:05.359 --> 00:30:08.160
We know they're going to need access to low-protein food.
00:30:08.240 --> 00:30:09.200
That's a given.
00:30:09.440 --> 00:30:12.640
We know they're going to need to track what food they're eating.
00:30:12.720 --> 00:30:13.599
That's a given.
00:30:13.759 --> 00:30:18.079
So these are things that you're very comfortable advocating for immediately.
00:30:18.240 --> 00:30:26.240
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.
00:30:26.480 --> 00:30:28.160
You know, I'm a I'm a fortunate dad.
00:30:28.400 --> 00:30:30.720
Addie is quite gifted academically.
00:30:30.880 --> 00:30:34.640
She doesn't have a need for extra time on tests or things like that yet.
00:30:34.960 --> 00:30:37.200
But I don't have a crystal ball.
00:30:37.359 --> 00:30:41.759
I don't know how PKU is going to affect her brain in the future.
00:30:42.079 --> 00:30:57.440
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.
00:30:57.680 --> 00:31:11.920
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.
00:31:12.240 --> 00:31:13.039
Absolutely.
00:31:13.200 --> 00:31:14.319
And that's a great point.
00:31:14.480 --> 00:31:23.440
I know you mentioned also the schools might be unfamiliar with specific metabolic conditions, so they might seem hesitant possibly.
00:31:23.759 --> 00:31:32.720
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?
00:31:32.880 --> 00:31:33.519
What is this?
00:31:33.680 --> 00:31:34.720
What is PKU?
00:31:34.799 --> 00:31:36.720
Like, what is happening?
00:31:37.839 --> 00:31:44.640
I've personally encountered this too, and I'm certain that everybody out there listening can can relate to this.
00:31:44.880 --> 00:31:50.079
You know, school school people look at Addy and they go, She looks fine.
00:31:50.240 --> 00:31:50.480
Yeah.
00:31:51.039 --> 00:31:51.839
Everything looks great.
00:31:51.920 --> 00:31:52.799
What are you talking about?
00:31:52.880 --> 00:31:53.440
What's wrong here?
00:31:53.519 --> 00:31:54.240
There's nothing wrong here.
00:31:54.480 --> 00:31:55.519
She's got two days.
00:31:55.599 --> 00:31:56.000
She's fine.
00:31:56.799 --> 00:32:02.720
And then it immediately makes them less inclined to, you know, consider and provide supports.
00:32:02.799 --> 00:32:07.920
Yeah, it's part of the reason why I said start as early as possible.
00:32:08.160 --> 00:32:18.640
You know, uh my school district is very small, so I have one person that manages all 504 plans kindergarten through 12th grade.
00:32:18.799 --> 00:32:23.359
And so I'm I'm hoping that this one person stays employed by my school district.
00:32:23.519 --> 00:32:26.400
I mean, for the duration of Addy's time there.
00:32:27.680 --> 00:32:31.279
She's she's going into sixth grade, so I've made it halfway.
00:32:31.519 --> 00:32:46.880
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.
00:32:47.119 --> 00:32:50.559
And so we have developed a really nice shorthand.
00:32:50.720 --> 00:33:02.240
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.
00:33:02.480 --> 00:33:06.960
But that's a working relationship that we've established over half a decade at this point.
00:33:07.119 --> 00:33:26.000
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.
00:33:26.319 --> 00:33:27.440
Absolutely.
00:33:27.680 --> 00:33:35.759
Well, with this all being said, we have a very special, extra special guest that's coming in, who's dear to my heart.
00:33:36.079 --> 00:33:48.799
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?
00:33:49.519 --> 00:33:50.559
Oh boy.
00:33:51.440 --> 00:33:53.759
Um, I'm not gonna get emotional.
00:33:55.920 --> 00:34:00.880
You know, I I kind of tying back to your first question.
00:34:01.039 --> 00:34:12.559
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.
00:34:13.039 --> 00:34:29.360
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.
00:34:29.519 --> 00:34:37.519
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.
00:34:37.679 --> 00:34:44.719
Um, and to see that she feels very supported by the adults, she feels very comfortable around her friends.
00:34:44.880 --> 00:34:56.960
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.
00:34:57.199 --> 00:34:59.199
It is it's like this true.
00:34:59.360 --> 00:35:17.679
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.
00:35:17.840 --> 00:35:25.440
It is it is just a a real point of pride and a real source of joy to see her um be this successful.
00:35:26.719 --> 00:35:30.320
All right, and we are back with our special guest, Addy.
00:35:30.559 --> 00:35:31.280
Hello, Addy.
00:35:31.519 --> 00:35:32.159
How are you?
00:35:32.480 --> 00:35:33.119
I'm good.
00:35:33.360 --> 00:35:33.679
Good.
00:35:33.760 --> 00:35:34.880
How old are you?
00:35:35.199 --> 00:35:36.239
I'm 10.
00:35:36.480 --> 00:35:38.000
And what grade are you going into?
00:35:38.320 --> 00:35:39.679
I'm going into sixth grade.
00:35:39.920 --> 00:35:40.639
That's exciting.
00:35:40.800 --> 00:35:41.599
Are you excited?
00:35:41.920 --> 00:35:43.119
Yes, I'm very excited.
00:35:43.360 --> 00:35:43.679
Good.
00:35:43.840 --> 00:35:46.079
But for now, we're gonna enjoy some summer, right?
00:35:46.400 --> 00:35:48.480
Yes, well-deserved.
00:35:48.800 --> 00:35:49.840
Well-deserved summer.
00:35:50.320 --> 00:35:51.199
There we go.
00:35:51.519 --> 00:35:54.400
Well, we do have some questions for you today, Addy.
00:35:54.800 --> 00:35:56.639
Thank you for joining us first off.
00:35:56.719 --> 00:35:58.079
It is great to have you.
00:35:58.320 --> 00:36:06.639
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.
00:36:06.960 --> 00:36:14.960
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?
00:36:15.840 --> 00:36:20.000
So there's like two key parts of my school day.
00:36:20.159 --> 00:36:22.480
There's the beginning and there's lunch.
00:36:23.039 --> 00:36:47.199
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.
00:36:47.840 --> 00:36:56.159
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.
00:36:56.559 --> 00:37:08.800
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.
00:37:10.159 --> 00:37:18.239
So every morning I'll go through the main entrance and drop off my formula, and like that's part of my 504.
00:37:18.559 --> 00:37:24.320
Like, my formula can't be like sitting in my locker, it needs to go to the nurse every morning.
00:37:24.800 --> 00:37:26.320
Okay, that's good to know.
00:37:26.960 --> 00:37:27.119
Yeah.
00:37:27.599 --> 00:37:29.280
You prefer whole formula, right?
00:37:29.679 --> 00:37:30.079
Yeah.
00:37:30.239 --> 00:37:32.960
I mean, to me, when it's warm, it kind of tastes gross.
00:37:33.199 --> 00:37:34.639
Yeah, makes sense.
00:37:37.679 --> 00:37:40.719
For the second paper, we have lunch.
00:37:41.039 --> 00:37:41.360
Okay.
00:37:41.679 --> 00:37:45.440
And lunch is where I pick up my formula again.
00:37:45.679 --> 00:37:48.159
Where I need to go back to the nurse's office.
00:37:48.480 --> 00:37:52.800
And at our school, it's like fine if you're late to lunch.
00:37:53.119 --> 00:37:58.719
Like, lunch is in an important period, so you can be late.
00:37:59.599 --> 00:38:08.079
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.
00:38:08.480 --> 00:38:13.039
So like it's nice to have friends that like know what's going on.
00:38:13.679 --> 00:38:18.400
Because you know, if I didn't, it'd kind of be weird.
00:38:19.519 --> 00:38:21.920
And when do you get hot lunch from school?
00:38:22.320 --> 00:38:25.119
Um, I have like a little lunch schedule.
00:38:25.440 --> 00:38:33.440
So Monday, Wednesday, and Friday, I get hot lunch, and Tuesday and Thursday I bring in my own lunch.
00:38:33.760 --> 00:38:35.199
That sounds like a great plan.
00:38:36.239 --> 00:38:37.039
Do you like it?
00:38:37.920 --> 00:38:39.119
Honestly, yeah.
00:38:39.360 --> 00:38:50.800
I mean, there has been some times where like they've given me food I don't really like, such as corndogs.
00:38:51.199 --> 00:38:51.360
Okay.
00:38:51.760 --> 00:38:53.360
Which I'll eat them.
00:38:54.000 --> 00:38:55.039
I'll I'll eat them.
00:38:55.119 --> 00:38:56.719
There's nothing wrong with corn dogs.
00:38:57.119 --> 00:38:57.840
I'll eat them.
00:38:58.239 --> 00:38:59.840
But not a favorite.
00:39:00.239 --> 00:39:01.199
Not a favorite, yeah.
00:39:02.480 --> 00:39:07.519
And like my school party, like, this was an example.
00:39:07.840 --> 00:39:11.440
Like, my school party, I had bagels at my school party.
00:39:11.599 --> 00:39:16.480
So I brought in my own bagels, I brought in my own sugar cookies, and I brought fruit for the whole class.
00:39:17.679 --> 00:39:21.199
There's another girl in my class with a 504 plan, she's lactose intolerant.
00:39:21.760 --> 00:39:23.119
So we're friends.
00:39:23.519 --> 00:39:23.760
Okay.
00:39:24.159 --> 00:39:33.280
Like I mean, it's it's really nice, but it was a problem because guess what they gave me for lunch?
00:39:33.519 --> 00:39:33.760
Why?
00:39:34.000 --> 00:39:34.800
Bagels.
00:39:36.639 --> 00:39:39.840
So this is where the corn dog comes back.
00:39:40.079 --> 00:40:02.960
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.
00:40:03.280 --> 00:40:05.920
Yeah, I definitely agree with that.
00:40:06.079 --> 00:40:11.679
There's times where you have to let the cafeteria people know how to cook certain foods.
00:40:11.920 --> 00:40:15.360
Because let's be honest, sometimes it's harder to cook low pro foods.
00:40:15.599 --> 00:40:20.159
Even I have this funny debate still today with my husband.
00:40:20.400 --> 00:40:27.920
I have to put more water in the pot to boil these noodles than regular noodles because they're gonna get sticky.
00:40:28.159 --> 00:40:28.480
Yeah.
00:40:28.719 --> 00:40:30.880
So it's gonna take boil.
00:40:31.440 --> 00:40:33.840
But cooking low pro is harder.
00:40:33.920 --> 00:40:41.360
So sometimes even you, Addy, as this now sixth grader, know how to cook better than cafeteria workers.
00:40:42.159 --> 00:40:47.280
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.
00:40:47.679 --> 00:40:54.079
Things like there's like one or two foods that I like better in the cafeteria than how my dad makes them.
00:40:54.960 --> 00:40:56.400
Yeah, and I take that very personally.
00:40:56.719 --> 00:40:57.599
It's it's weird.
00:40:57.840 --> 00:40:58.719
Come on, dad.
00:40:59.039 --> 00:41:00.239
Why would you take that personally?
00:41:01.760 --> 00:41:02.800
Of course you are.
00:41:03.199 --> 00:41:18.320
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.
00:41:18.480 --> 00:41:20.159
Like, ooh, I like this.
00:41:20.639 --> 00:41:31.440
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.
00:41:31.920 --> 00:41:32.400
Exactly.
00:41:32.719 --> 00:41:34.400
That's true, that's very true.
00:41:34.719 --> 00:41:37.599
And I think your dad as a psychologist could agree.
00:41:38.000 --> 00:41:42.480
I a hundred percent agree as a psychologist and a dad.
00:41:43.599 --> 00:41:46.079
I could tell there's also some law in your family.
00:41:46.320 --> 00:41:46.719
That's it.
00:41:46.880 --> 00:41:47.920
Yes, that's it.
00:41:48.079 --> 00:41:49.440
I know that too.
00:41:49.760 --> 00:41:50.400
All right.
00:41:50.719 --> 00:41:55.840
Well, I wanted to ask you what's the best thing about having PKU at school?
00:41:56.000 --> 00:41:59.440
And is there anything you wish could be a little bit different or easier?
00:42:00.079 --> 00:42:04.320
Honestly, there's literally only one thing that I think I wish could be different.
00:42:05.119 --> 00:42:11.039
I wish, like in elementary school, because this is my first year in middle school, in my school, fifth grade to middle.
00:42:11.440 --> 00:42:15.599
So in elementary school, they like recently just changed this.
00:42:16.480 --> 00:42:24.400
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.
00:42:24.800 --> 00:42:33.840
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.
00:42:34.159 --> 00:42:41.519
And that's actually a perfect example of you know, 504 plans have to evolve based on the building.
00:42:41.760 --> 00:42:55.599
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.
00:42:55.840 --> 00:43:02.800
The nurse's office was the best choice given what we had, but it's still not ideal like it was in elementary school.
00:43:03.039 --> 00:43:13.360
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?
00:43:14.239 --> 00:43:20.079
I I do it was easier back then because like kindergarten that's like basics.
00:43:20.639 --> 00:43:25.360
And she like kindergarten was a weird year for me because of COVID.
00:43:25.679 --> 00:43:36.000
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.
00:43:36.159 --> 00:43:38.400
But obviously, we have a cafeteria now.
00:43:38.639 --> 00:43:45.920
Like where we eat but it it'd be much easier to have an aide to go and do that in the morning.
00:43:46.239 --> 00:43:46.639
Yeah.
00:43:47.199 --> 00:43:48.559
I'm sure it would be.
00:43:48.880 --> 00:43:56.400
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.
00:43:56.800 --> 00:43:59.199
And it's don't get me wrong, it's not hard.
00:43:59.360 --> 00:44:02.320
It's not like My homeroom teacher's like, oh, you're late, what's wrong?
00:44:02.559 --> 00:44:03.519
And I'm not late.
00:44:03.679 --> 00:44:05.840
I've I've never really been late.
00:44:06.320 --> 00:44:14.719
But it's it's just harder because I feel like I'm the last one showing up to class.
00:44:15.039 --> 00:44:17.599
Well, and I also think it's harder because it's just different.
00:44:17.920 --> 00:44:19.119
Yeah, it's it's different.
00:44:19.280 --> 00:44:29.440
He he my dad has a point, but it's also like it feels weirder because in homeroom we have work to do.
00:44:29.519 --> 00:44:31.039
We have like morning work.
00:44:31.280 --> 00:44:36.719
So there there were some days where I just wasn't finishing that because I was at the nurse's office.
00:44:36.880 --> 00:44:41.360
And obviously, it's just like it's like stuff in the Chromebook, stuff in the computer.
00:44:41.599 --> 00:44:47.360
So my teacher's like, it's not that big of a deal, but it'd be nice to still have that extra time.
00:44:47.679 --> 00:44:49.599
Yeah, makes sense.
00:44:49.920 --> 00:44:52.880
Well, with that, let's end on a high note.
00:44:53.119 --> 00:44:55.679
What's your favorite part about having PKO?
00:44:56.559 --> 00:45:01.199
I I honestly like how everybody's so kind about it.
00:45:01.360 --> 00:45:04.239
It's not like I'm getting treated differently.
00:45:04.480 --> 00:45:07.440
It's like I'm I'm a human being at school.
00:45:07.599 --> 00:45:09.119
I'm this I'm just a person.
00:45:09.360 --> 00:45:11.280
There's nothing different about me.
00:45:11.599 --> 00:45:23.920
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.
00:45:24.159 --> 00:45:33.039
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.
00:45:34.880 --> 00:45:35.360
Exactly.
00:45:35.679 --> 00:45:36.800
We all hear it, Addy.
00:45:36.960 --> 00:45:41.760
We all know and and they were just like, So are you a baby?
00:45:42.079 --> 00:45:46.159
And this was like first grade, and I was like, Why would I be a baby?
00:45:46.559 --> 00:45:53.760
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.
00:45:54.000 --> 00:45:58.639
Yeah, because to me this is normal, but to them this is like a whole different thing.
00:45:58.960 --> 00:45:59.519
Yeah.
00:46:00.320 --> 00:46:04.159
But now that we're I don't want to say now that we're all older.
00:46:04.400 --> 00:46:05.280
Well, you are older.
00:46:05.599 --> 00:46:09.599
Now that now that we're all like middle schoolers, yeah.
00:46:09.760 --> 00:46:18.239
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.
00:46:18.559 --> 00:46:19.440
And that's good.
00:46:19.679 --> 00:46:29.840
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.
00:46:30.000 --> 00:46:38.400
I like answering questions, and it just makes me feel happy knowing that like people know and that they care about it.
00:46:38.800 --> 00:46:53.519
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.
00:46:53.840 --> 00:46:58.559
So that friend that you have accommodations with could stick with you forever.
00:46:58.880 --> 00:46:59.679
You never know.
00:47:00.079 --> 00:47:11.599
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.
00:47:11.920 --> 00:47:12.400
Hey.
00:47:13.760 --> 00:47:18.800
Or you meet this little girl at a conference and then she paints you a picture.
00:47:19.119 --> 00:47:20.159
Oh you still have it.
00:47:20.400 --> 00:47:21.360
Oh, you still have it.
00:47:22.800 --> 00:47:25.280
Oh my god, I love it.
00:47:25.679 --> 00:47:28.480
Oh that was when you helped me with the finger prick.
00:47:28.719 --> 00:47:43.679
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.
00:47:43.840 --> 00:47:45.440
But she painted me a photo.
00:47:45.679 --> 00:47:49.039
So connections in the community are everything, right, Addy?
00:47:49.440 --> 00:47:49.760
Yes.
00:47:50.000 --> 00:47:51.199
And that's another cool thing.
00:47:51.280 --> 00:47:52.559
We've traveled the country now.
00:47:53.280 --> 00:47:54.559
We're going all over the place.
00:47:54.800 --> 00:47:58.639
It's like Oregon, Washington, it was Atlanta.
00:47:58.960 --> 00:47:59.440
Atlanta.
00:47:59.599 --> 00:48:00.320
That was when I was little.
00:48:00.719 --> 00:48:01.280
You were baby.
00:48:01.599 --> 00:48:02.880
I was very little in Atlanta.
00:48:02.960 --> 00:48:03.199
Yeah.
00:48:03.440 --> 00:48:16.480
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.
00:48:17.360 --> 00:48:20.559
And it it's just an amazing feeling.
00:48:20.960 --> 00:48:49.280
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.
00:48:49.920 --> 00:48:51.119
Oh boy, are we.
00:48:51.360 --> 00:48:53.280
We're going to labs tomorrow, actually.
00:48:53.519 --> 00:48:53.840
Oh.
00:48:56.239 --> 00:48:59.519
Kicking off the 4th of July weekend with a nice blood draw.
00:48:59.840 --> 00:49:00.480
Yay.
00:49:01.199 --> 00:49:03.039
Hey, red, white, and blue.
00:49:04.559 --> 00:49:05.360
Extra red.
00:49:05.519 --> 00:49:06.079
That's a good one.
00:49:06.400 --> 00:49:07.360
Extra red for you.
00:49:07.519 --> 00:49:07.920
Yes.
00:49:08.159 --> 00:49:12.079
Hey, we're going to there we go.
00:49:12.400 --> 00:49:15.840
Well, thank you so, so, so much, Addy, for coming on.
00:49:16.000 --> 00:49:17.360
I appreciate it.
00:49:17.760 --> 00:49:19.039
You were our star.
00:49:19.760 --> 00:49:22.079
And I have a couple more questions for your dad.
00:49:22.159 --> 00:49:25.119
You're welcome to stay here or disappear.
00:49:25.280 --> 00:49:25.679
You choose.
00:49:25.920 --> 00:49:26.639
Whatever you like.
00:49:26.960 --> 00:49:28.480
But up to you.
00:49:29.199 --> 00:49:37.760
In the meantime, Eugene, as children grow from preschool through high school and beyond, how do their needs for accommodations evolve over time?
00:49:37.920 --> 00:49:46.320
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?
00:49:46.639 --> 00:50:03.679
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.
00:50:04.000 --> 00:50:15.679
Um, you know, 504 plans are something that could follow uh a person through K through 12, into college, throughout their adult life.
00:50:15.920 --> 00:50:25.039
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.
00:50:25.280 --> 00:50:39.440
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.
00:50:39.679 --> 00:50:50.320
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.
00:50:50.480 --> 00:50:58.480
But I think it is important to acknowledge you can carry a 504 plan through from kindergarten to when you retire.
00:50:58.639 --> 00:51:03.280
Um if you if you work in the right environments and advocate.
00:51:03.599 --> 00:51:06.239
Addie and I are gonna be old ladies with our 504s.
00:51:06.480 --> 00:51:07.920
Old ladies with your 504 plans.
00:51:08.000 --> 00:51:08.960
I'm here for it.
00:51:09.840 --> 00:51:10.320
All right.
00:51:10.480 --> 00:51:11.840
Well, that's good to hear too.
00:51:12.000 --> 00:51:19.119
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.
00:51:19.280 --> 00:51:24.400
I know I was able to have the accommodations follow me in college, but that is very interesting.
00:51:24.719 --> 00:51:25.519
Very interesting.
00:51:25.679 --> 00:51:26.880
Thank you for sharing that.
00:51:27.039 --> 00:51:36.719
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?
00:51:37.280 --> 00:51:51.119
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.
00:51:51.360 --> 00:51:59.440
Um it is an added layer of stress and complexity when when we're talking about like our little PKU babies.
00:51:59.679 --> 00:52:14.400
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.
00:52:14.880 --> 00:52:23.280
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.
00:52:23.440 --> 00:52:29.199
It's been really valuable to hear your perspective on what meaningful support can look like in practice.
00:52:29.440 --> 00:52:32.880
And of course, a big thank you to Addy for joining us too.
00:52:33.119 --> 00:52:37.119
Sharing a glimpse of what it's like to be at school a day in your life.
00:52:37.360 --> 00:52:42.639
It's been wonderful to hear directly from you and how support can make a real difference day to day.
00:52:43.440 --> 00:52:47.280
But now is the fun part, and it's time for our community questions.
00:52:47.519 --> 00:52:56.559
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.
00:52:57.119 --> 00:53:02.000
Our questions today are from registered dietitian Rebecca Jennings.
00:53:02.480 --> 00:53:04.159
So here we go with the first question.
00:53:04.239 --> 00:53:04.960
Are you ready?
00:53:05.199 --> 00:53:05.920
I'm ready.
00:53:06.159 --> 00:53:07.360
All right, here we go.
00:53:07.599 --> 00:53:16.480
How can parents effectively prepare teachers, school nurses, and other staff who may have little or no prior experience with PKU?
00:53:17.679 --> 00:53:24.079
The answer is advocate and educate as early as humanly possible.
00:53:24.559 --> 00:53:36.960
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.
00:53:37.199 --> 00:53:47.760
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.
00:53:48.000 --> 00:53:57.199
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.
00:53:57.280 --> 00:54:00.880
Um so they're the stakeholders that you're gonna want to educate on.
00:54:01.039 --> 00:54:02.480
What is PKU?
00:54:02.719 --> 00:54:03.920
What are the needs?
00:54:04.159 --> 00:54:13.119
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?
00:54:13.360 --> 00:54:17.440
The sooner you do it, the more persistent you are, the better.
00:54:17.920 --> 00:54:19.039
Sounds good.
00:54:19.440 --> 00:54:27.920
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.
00:54:28.079 --> 00:54:40.719
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?
00:54:41.360 --> 00:54:46.400
I think it's really important to normalize the experience as early as possible.
00:54:46.639 --> 00:55:02.400
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.
00:55:02.559 --> 00:55:12.079
You know, Addy has an older brother who has his own growing boy nutritional needs that we have to meet as well for him.
00:55:12.239 --> 00:55:16.880
And and his nutritional needs look very different from Addy's, and that's okay.
00:55:17.039 --> 00:55:26.719
Um, and from an early age, teaching your child to the best of their ability to manage their food and their diet independently.
00:55:26.880 --> 00:55:40.239
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.
00:55:40.559 --> 00:55:44.719
Um I I'm gonna share a real proud dad moment from yesterday.
00:55:44.960 --> 00:55:46.400
Oh recently.
00:55:47.440 --> 00:55:50.639
Yesterday it was um my wife's birthday.
00:55:50.880 --> 00:55:52.880
Okay, two days ago, I apologize.
00:55:53.039 --> 00:55:56.400
Two days ago is my wife's birthday, and we were out to dinner.
00:55:56.639 --> 00:56:07.360
Um, and Addy ordered off the menu completely by herself and shared with the the wait staff.
00:56:07.679 --> 00:56:17.039
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.
00:56:17.199 --> 00:56:23.920
And she ordered herself a salad with all the vegetables that she likes and a plate of French fries all by herself.
00:56:24.079 --> 00:56:25.039
I did not help.
00:56:25.280 --> 00:56:26.719
I couldn't have been more proud.
00:56:26.960 --> 00:56:27.679
That's amazing.
00:56:28.480 --> 00:56:40.800
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.
00:56:41.039 --> 00:56:45.599
Um, and and explain it to the wait staff appropriately.
00:56:46.000 --> 00:56:50.800
So this is a real ten years in the making moment.
00:56:50.960 --> 00:56:51.920
Of course you could say something.
00:56:52.639 --> 00:57:06.239
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.
00:57:06.880 --> 00:57:13.679
So this year was like the first year I actually learned how to like do this independently, like totally.
00:57:14.239 --> 00:57:26.559
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.
00:57:27.119 --> 00:57:31.039
They've they've both been amazing, like my whole life.
00:57:31.360 --> 00:57:33.440
They've helped me do everything.
00:57:33.679 --> 00:57:48.400
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.
00:57:48.719 --> 00:57:50.239
Yeah, yes it is.
00:57:50.559 --> 00:57:55.280
But but but that is the answer is practice, practice, practice.
00:57:55.440 --> 00:58:06.159
Don't be afraid to let your child participate or at least observe at their appropriate level for their age and for their ability.
00:58:06.320 --> 00:58:12.239
Um, and and slowly but surely they're gonna they're gonna take the mantle, they're gonna do it all on their own.
00:58:12.400 --> 00:58:13.119
There we go.
00:58:13.360 --> 00:58:17.280
Okay, now I have an added community question from myself to Addy.
00:58:18.000 --> 00:58:21.360
What is your favorite part about being your own advocate?
00:58:21.760 --> 00:58:22.400
Oof.
00:58:22.800 --> 00:58:25.440
I have a lot of being my favorite advocate.
00:58:25.760 --> 00:58:32.880
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.
00:58:33.039 --> 00:58:33.920
I can rely on myself.
00:58:35.039 --> 00:58:36.480
That's a perfect answer for her.
00:58:36.800 --> 00:58:37.440
That's a good answer.
00:58:37.519 --> 00:58:38.079
I'm not gonna lie.
00:58:38.239 --> 00:58:39.039
10 out of 10.
00:58:39.360 --> 00:58:40.400
Good job.
00:58:40.719 --> 00:58:43.119
That's it for our community conversations.
00:58:43.360 --> 00:58:51.519
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.
00:58:51.840 --> 00:58:57.360
Before we wrap up, our aim is to make this podcast feel relevant to the whole metabolic community.
00:58:57.679 --> 00:59:09.440
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.
00:59:09.840 --> 00:59:15.599
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.
00:59:16.000 --> 00:59:23.039
Finally, remember that you can find helpful resources as well as all information from Eugene in the show notes below.
00:59:23.280 --> 00:59:25.599
Thank you for listening and we'll see you next time.
00:59:25.920 --> 00:59:26.480
Bye.
00:59:26.880 --> 00:59:29.840
That's it for today's episode of Metabolically Speaking.
00:59:30.079 --> 00:59:36.880
Rare conditions, real stories, and a reminder that life with a metabolic condition is about living, not limits.
00:59:37.360 --> 00:59:41.760
If today's episode resonated with you, share it with someone who might need to hear it.
00:59:41.920 --> 00:59:44.480
And if you have a moment, please leave us a review.
00:59:44.639 --> 00:59:47.119
It helps others find their way here too.
00:59:47.360 --> 00:59:48.960
We'd love to hear from you.
00:59:49.119 --> 00:59:53.920
If you have feedback, a story to share, or a question, send us an email.
00:59:54.079 --> 00:59:56.400
Find the address in the show notes below.
00:59:56.559 --> 01:00:03.760
And make sure to subscribe to Metabolically Speaking on your favorite podcast platform and tune in each month to join your tribe.
01:00:04.000 --> 01:00:06.320
Breaking barriers and living without limits.
01:00:06.639 --> 01:00:09.519
Thank you for being here, and we'll see you next time.
00:00:04.799 --> 00:00:08.560
Starting school is a significant milestone for any child.
00:00:08.720 --> 00:00:15.279
But when a rare metabolic condition like PKU is part of the picture, it could be added layers of uncertainty.
00:00:15.519 --> 00:00:26.960
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.
00:00:27.199 --> 00:00:29.359
In this episode, we're joined by Dr.
00:00:29.440 --> 00:00:41.039
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.
00:00:41.280 --> 00:00:50.240
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.
00:00:50.399 --> 00:01:00.560
Together, we explore how accommodations can support well-being and academic success, what parents can do to prepare, and how needs evolve over time.
00:01:00.880 --> 00:01:08.239
We're also joined by a very special guest, Eugene's daughter Abby, who shares her own experience of school life with PKU.
00:01:12.239 --> 00:01:18.079
Welcome to Metabolically Speaking, the podcast that dives into life with inherited metabolic conditions.
00:01:18.319 --> 00:01:25.920
Privately brought to you by Cambrook, delivering therapeutic nutrition for more than 25 years and empowering families to live without limits.
00:01:26.159 --> 00:01:28.000
I'm your host, Meredith Baker.
00:01:28.159 --> 00:01:35.439
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.
00:01:35.840 --> 00:01:46.000
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.
00:01:46.239 --> 00:01:52.640
Whether you're newly diagnosed, supporting someone you love, or have been on this journey for a while, this space is for you.
00:01:52.799 --> 00:01:55.359
So settle in and let's get into it.
00:02:07.599 --> 00:02:09.039
Joining me today is Dr.
00:02:09.120 --> 00:02:10.479
Eugene Loveliner.
00:02:10.960 --> 00:02:25.919
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.
00:02:26.240 --> 00:02:34.159
He has extensive experience working with families and schools to support children with additional learning and developmental needs.
00:02:34.719 --> 00:02:45.039
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.
00:02:45.439 --> 00:02:47.120
Eugene, thank you for joining us.
00:02:47.280 --> 00:02:49.120
We're so happy to have you here with us today.
00:02:49.759 --> 00:02:50.479
Thank you, Meredith.
00:02:50.639 --> 00:02:51.280
I'm happy to be here.
00:02:51.360 --> 00:02:51.840
Really happy.
00:02:52.080 --> 00:02:52.639
Of course.
00:02:52.800 --> 00:02:53.680
It's gonna be great.
00:02:53.840 --> 00:02:54.960
Let's get started.
00:02:55.840 --> 00:03:01.199
We have some very valuable insights to explore today, and I cannot wait to hear more from you.
00:03:01.439 --> 00:03:05.120
So, with that, the first question is directed towards you.
00:03:05.199 --> 00:03:12.080
I know your daughter's gonna be joining us, but you've spent over 15 years helping families navigate the school system.
00:03:12.400 --> 00:03:17.759
And then your perspective became more personal when your daughter Addy was born with PKU.
00:03:18.240 --> 00:03:26.159
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?
00:03:26.719 --> 00:03:27.520
Absolutely.
00:03:27.680 --> 00:03:33.439
Um, I was a psychologist for eight years before we had Addy.
00:03:33.840 --> 00:03:45.840
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.
00:03:46.240 --> 00:03:54.879
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.
00:03:55.199 --> 00:04:09.840
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.
00:04:11.039 --> 00:04:17.120
It really just changes how you interact with the students that you work with professionally.
00:04:17.279 --> 00:04:25.600
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.
00:04:26.160 --> 00:04:30.879
Yeah, it definitely adds a more personal experience and touch to what you're already working on.
00:04:30.959 --> 00:04:36.879
So I'm sure you felt more dedicated as time goes and continues to go as it is.
00:04:38.000 --> 00:04:42.240
Without question, it's it's it's it's a very rewarding experience.
00:04:42.480 --> 00:04:55.040
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.
00:04:55.279 --> 00:04:58.480
And I I experience it personally day to day.
00:04:58.720 --> 00:05:02.879
Yeah, you see the difference you're making now by just seeing others doing it for Addy.
00:05:03.439 --> 00:05:04.160
Absolutely.
00:05:04.399 --> 00:05:05.120
Absolutely.
00:05:05.839 --> 00:05:14.879
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?
00:05:15.600 --> 00:05:30.240
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.
00:05:30.399 --> 00:05:44.160
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.
00:05:44.480 --> 00:05:56.639
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.
00:05:56.959 --> 00:06:10.560
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.
00:06:11.680 --> 00:06:16.639
That definitely makes sense with what age group we're also talking about.
00:06:17.519 --> 00:06:26.800
So, why can schools be particularly challenging for children with metabolic conditions, not just medically, but also socially and academically?
00:06:27.199 --> 00:06:27.839
Oh, sure.
00:06:27.920 --> 00:06:47.279
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.
00:06:47.519 --> 00:06:52.800
Most schools allow food celebrations for birthdays, for holidays.
00:06:53.120 --> 00:07:09.519
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.
00:07:09.680 --> 00:07:15.600
They can't eat the munchkin that that a parent decided to bring in for Thanksgiving.
00:07:15.839 --> 00:07:24.720
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.
00:07:25.040 --> 00:07:35.600
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.
00:07:35.759 --> 00:07:38.079
They don't have to participate that way in the school day.
00:07:38.240 --> 00:07:40.240
It's much more natural and easygoing.
00:07:41.199 --> 00:08:00.560
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.
00:08:00.879 --> 00:08:17.680
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.
00:08:17.839 --> 00:08:24.800
You're not gonna be able to prioritize the work as effectively because of those executive functioning deficits.
00:08:24.959 --> 00:08:34.480
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.
00:08:35.039 --> 00:08:59.039
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.
00:08:59.519 --> 00:09:06.399
So when she has uh when it's pizza day at the cafeteria, she has her own cheese pizza.
00:09:06.559 --> 00:09:11.360
When it's chicken nugget day at the cafeteria, she has her own veggie nuggets.
00:09:11.600 --> 00:09:24.559
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.
00:09:24.799 --> 00:09:30.960
It allows her to just have that shared experience that all the other kids in the cafeteria are having.
00:09:31.279 --> 00:09:34.399
We also address it through 504 accommodations.
00:09:34.639 --> 00:09:52.159
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.
00:09:52.399 --> 00:10:19.679
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.
00:10:20.080 --> 00:10:20.639
Of course.
00:10:20.799 --> 00:10:33.200
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.
00:10:33.840 --> 00:10:35.600
Oh boy, you had the trifecta.
00:10:35.919 --> 00:10:38.559
Yeah, oh me and Addie team.
00:10:38.879 --> 00:10:48.559
But but with all of that, that did really help support the social aspect and the health aspect of having PKU.
00:10:48.960 --> 00:10:57.360
I think it was very, very important to still be able to have every social interaction that everyone else was having.
00:10:57.759 --> 00:11:09.919
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.
00:11:10.080 --> 00:11:20.240
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.
00:11:20.480 --> 00:11:20.799
Yep.
00:11:20.960 --> 00:11:25.039
And so the school could order the Cambrook cookies and just stash them.
00:11:25.279 --> 00:11:35.679
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.
00:11:36.080 --> 00:11:37.759
We have the same exact setup.
00:11:38.399 --> 00:11:49.679
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.
00:11:49.919 --> 00:11:59.200
But the last thing that my parents were going to allow was to have any social interactions changed on me due to having PKU.
00:11:59.519 --> 00:12:02.720
So I think it's also a perfect illustration there, Meredith.
00:12:02.879 --> 00:12:03.120
Yeah.
00:12:03.360 --> 00:12:22.720
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.
00:12:22.960 --> 00:12:28.080
And and it really does just involve taking a couple of extra steps than what's normally done.
00:12:28.399 --> 00:12:34.639
And not every single time it's gonna be easy, because trust me, there's always gonna be those days no matter what.
00:12:34.960 --> 00:12:37.679
But at least there's those cookies in the pantry.
00:12:38.960 --> 00:12:51.919
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?
00:12:52.080 --> 00:12:53.039
Yes, there have.
00:12:53.279 --> 00:12:55.200
Those days are unavoidable.
00:12:55.360 --> 00:13:01.759
Um, but we try to minimize them, we try to make it as seamless and as stress-free for everyone as possible.
00:13:02.000 --> 00:13:03.440
Yes, exactly.
00:13:03.600 --> 00:13:10.559
So I think that's definitely an experience that everyone has had with being in this community.
00:13:10.879 --> 00:13:16.159
But there's also the Cambrook school kits now that Cambrook is offering.
00:13:16.399 --> 00:13:23.759
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.
00:13:23.840 --> 00:13:33.440
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.
00:13:33.919 --> 00:13:48.159
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.
00:13:48.240 --> 00:13:55.279
So if you want that information, you can also get that information in the link below and request one of those school kits.
00:13:55.600 --> 00:14:00.639
And what I advise to all parents is the more prepared you are, the better.
00:14:00.799 --> 00:14:10.080
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.
00:14:10.240 --> 00:14:15.279
So don't be like, oh, it's June, everybody is gone for the summer.
00:14:15.440 --> 00:14:21.919
The people that prepare these plans and create the stuff, there's always someone working year-round in a school district.
00:14:22.080 --> 00:14:31.759
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.
00:14:31.919 --> 00:14:40.799
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.
00:14:41.279 --> 00:14:56.000
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?
00:14:56.159 --> 00:15:00.240
And how are they able to be applied to children with metabolic disorders?
00:15:00.559 --> 00:15:01.279
Absolutely.
00:15:01.440 --> 00:15:05.200
Um, that's a really good question, and and one I get a lot from parents.
00:15:05.519 --> 00:15:12.720
Um let's start with a 504 plan because that is the the plan that casts the widest net.
00:15:12.960 --> 00:15:26.879
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.
00:15:27.279 --> 00:15:39.679
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.
00:15:39.840 --> 00:15:47.600
And basically, it's a plan that where you need accommodations for equal access to your education.
00:15:47.919 --> 00:15:58.480
It's not about providing a different learning environment from a special education teacher, it's just about access to the education.
00:15:58.799 --> 00:16:08.720
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.
00:16:08.960 --> 00:16:11.919
It is just accommodations for access.
00:16:12.240 --> 00:16:23.120
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.
00:16:23.279 --> 00:16:33.039
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.
00:16:33.279 --> 00:16:41.519
So, because none of that really speaks to an educational accommodation, that's all done through a 504 plan.
00:16:42.559 --> 00:16:47.120
504 plans apply to any school that receives public funding.
00:16:47.519 --> 00:17:00.320
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.
00:17:00.639 --> 00:17:06.880
Um, an IEP is for a child with a educational need.
00:17:07.039 --> 00:17:19.680
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.
00:17:20.000 --> 00:17:26.559
Now, an IEP can do everything that a 504 plan does, but also you can add more things.
00:17:26.720 --> 00:17:32.400
Um, you can provide specially designed instruction, not just accommodations.
00:17:32.640 --> 00:17:37.200
So children can be in an integrated co-teaching class or an inclusion class.
00:17:37.359 --> 00:17:44.079
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.
00:17:44.319 --> 00:17:50.079
In addition to all of those food-based and building access accommodations.
00:17:50.559 --> 00:18:10.079
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.
00:18:10.160 --> 00:18:12.240
There's more procedural safeguards.
00:18:12.400 --> 00:18:18.960
Um, all public schools have to provide eligibility criteria for an IEP.
00:18:19.119 --> 00:18:26.640
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.
00:18:26.960 --> 00:18:32.880
Now, for a child with PKU, a 504 plan or an IEP are very appropriate.
00:18:33.119 --> 00:18:39.599
Um, most students with PKU who are academically successful really only need a 504 plan.
00:18:39.920 --> 00:18:51.680
But an IEP may be appropriate when PKU-related learning, such as executive functioning deficits or cognitive delays, require some sort of specialized instruction.
00:18:51.839 --> 00:18:56.000
If you need the specialized instruction, we're really in the realm of an IEP.
00:18:56.240 --> 00:18:57.759
Yeah, that makes sense.
00:18:57.920 --> 00:19:01.680
I will say I had both the 504 and IEP.
00:19:02.079 --> 00:19:08.079
We noticed that we added that IEP when I was struggling more in the afternoon classes.
00:19:08.319 --> 00:19:26.799
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.
00:19:26.960 --> 00:19:42.720
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.
00:19:42.960 --> 00:19:46.480
Well, there's actually a lot to unpack there, and that's really good information.
00:19:46.799 --> 00:19:49.920
Some school districts will do both.
00:19:50.240 --> 00:19:51.759
You don't need both.
00:19:51.920 --> 00:19:55.839
You everything that's on a 504 plan can be on an IEP.
00:19:56.000 --> 00:19:56.319
Okay.
00:19:56.640 --> 00:19:58.640
But that doesn't mean you can't have both.
00:19:58.799 --> 00:19:58.960
Yeah.
00:19:59.200 --> 00:20:08.160
So so you can have the 504 plan for all of the PKU related accommodations and then the IEP for just the academic supports.
00:20:08.400 --> 00:20:08.559
Yeah.
00:20:08.880 --> 00:20:09.359
That makes sense.
00:20:09.680 --> 00:20:12.480
Both both are legally enforceable documents.
00:20:12.640 --> 00:20:14.640
That's the most important thing to remember.
00:20:14.799 --> 00:20:14.960
Yeah.
00:20:15.200 --> 00:20:28.240
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.
00:20:28.559 --> 00:20:37.519
Um and and also, interestingly enough, you you raised another good point about these PKU-related academic deficits.
00:20:37.759 --> 00:20:47.599
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.
00:20:47.839 --> 00:20:54.720
Um, because you weren't getting the appropriate access to formula at that moment, but you figured it out.
00:20:54.880 --> 00:21:09.039
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.
00:21:09.200 --> 00:21:13.279
Um, you know, at the secondary level, that becomes uh a greater concern.
00:21:13.359 --> 00:21:22.559
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.
00:21:22.799 --> 00:21:23.039
Yeah.
00:21:23.200 --> 00:21:26.799
There were even some teachers that wouldn't even allow drinks in the classroom.
00:21:26.960 --> 00:21:27.119
Sure.
00:21:27.279 --> 00:21:30.880
So that's where I was working with was just being able to have that cup at my desk.
00:21:31.039 --> 00:21:31.200
Sure.
00:21:31.519 --> 00:21:33.680
So I wasn't even needing to exit.
00:21:33.839 --> 00:21:38.079
So that could even be considered one of the accommodations, is just having a cup at your desk.
00:21:38.400 --> 00:21:40.480
That is a perfect example, Meredith.
00:21:40.640 --> 00:21:45.759
You know, the idea is look, every teacher, for better or worse, runs their classroom the way that they want to.
00:21:46.240 --> 00:21:56.559
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.
00:21:56.799 --> 00:21:59.839
But there are always going to be some students that need an accommodation.
00:22:00.160 --> 00:22:05.839
Accommodation that may run counterintuitive to how a teacher wants to run their class.
00:22:06.079 --> 00:22:08.480
And that's where the 504 comes into play.
00:22:08.640 --> 00:22:14.079
Once it's written in there as an accommodation, it's enforceable, and that teacher really doesn't have a choice.
00:22:14.240 --> 00:22:18.319
They they they if they were to not allow you, they would to do that.
00:22:18.480 --> 00:22:23.839
They would be breaking the contract set forth in that 504 plan or that IEP.
00:22:24.160 --> 00:22:24.799
Yes.
00:22:25.200 --> 00:22:30.240
Well, that is a great way to send off the next question I have for you.
00:22:30.480 --> 00:22:37.039
What do you think are the best examples or effective accommodations for a child with a metabolic disorder during the day?
00:22:37.200 --> 00:22:43.519
Or maybe what is something that Addy has experienced with her accommodations that she values the best?
00:22:43.920 --> 00:22:53.119
You know, the best accommodation is something that evolves as your kid grows through the school year, um, through the through K through 12.
00:22:53.359 --> 00:23:10.319
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.
00:23:10.559 --> 00:23:20.799
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.
00:23:20.960 --> 00:23:26.640
Um, and you want to make sure that the food is that's not being eaten is coming back for appropriate planning.
00:23:26.880 --> 00:23:29.599
You know, I'll speak specifically about Addy.
00:23:30.160 --> 00:23:35.359
She had a she still has a fairly low tolerance for fee.
00:23:35.839 --> 00:23:46.400
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.
00:23:46.720 --> 00:23:58.079
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.
00:23:58.400 --> 00:24:05.440
So we had to make sure that any uneaten portions of food were appropriately wrapped and sent back home with us.
00:24:05.599 --> 00:24:14.160
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.
00:24:14.400 --> 00:24:18.559
We have to make sure that she's not sneaking a bite of something off of someone else's plate.
00:24:18.720 --> 00:24:28.640
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.
00:24:28.880 --> 00:24:45.839
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.
00:24:46.160 --> 00:24:47.839
So this was younger years?
00:24:48.079 --> 00:24:48.559
Younger years.
00:24:48.640 --> 00:24:49.839
This is K through two.
00:24:50.240 --> 00:24:50.559
Okay.
00:24:51.440 --> 00:24:58.559
Um also really important to advocate for early on, uh, refrigeration access for formula.
00:24:58.720 --> 00:25:05.039
You know, not every building logistically has the nurse's office close to the classroom.
00:25:05.200 --> 00:25:16.079
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.
00:25:16.240 --> 00:25:22.160
So to store the refrigerated formula there was cumbersome and not really not really feasible.
00:25:22.400 --> 00:25:29.759
So there was a they provided a small refrigerator for the classroom for her to store her formula in.
00:25:30.160 --> 00:25:34.799
Um and and you also want just access to low protein foods.
00:25:34.880 --> 00:25:40.640
So those are the the three things that I always recommend parents advocate for in the beginning.
00:25:40.880 --> 00:25:57.359
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.
00:25:57.599 --> 00:26:06.640
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.
00:26:06.799 --> 00:26:10.000
She knows uh what she can and cannot eat now.
00:26:10.079 --> 00:26:11.920
So that that became less of an issue.
00:26:12.000 --> 00:26:13.920
So we withdrew that support.
00:26:14.160 --> 00:26:24.000
Um and really now it is mostly about food preparation, provision of low-protein food, and access to breaks for formula.
00:26:24.240 --> 00:26:44.480
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.
00:26:45.039 --> 00:26:59.359
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.
00:26:59.440 --> 00:27:05.440
You know, executive functioning deficits can become more pronounced as a child ages.
00:27:05.599 --> 00:27:18.400
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.
00:27:18.720 --> 00:27:23.920
Even well-managed PKU can have executive functioning deficits.
00:27:24.000 --> 00:27:30.559
Um, it's not necessarily due to food experimentation, it really can just be the course of development.
00:27:30.720 --> 00:27:40.880
Um, you may want to advocate for extended time on tests, testing in a location with minimal distraction, uh, extended time for homework assignments.
00:27:41.039 --> 00:27:52.400
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.
00:27:52.640 --> 00:27:53.680
Yeah, for sure.
00:27:53.839 --> 00:27:58.880
I think that's very, very informational and some good notes for parents to take.
00:27:59.039 --> 00:28:07.200
But what do you think about when parents should start placing these accommodations or asking for these um 504s or IEPs to start?
00:28:07.279 --> 00:28:11.119
And who should they start speaking to first for this to be implemented?
00:28:11.519 --> 00:28:14.960
You know, the the earlier the better.
00:28:15.200 --> 00:28:23.279
So as soon as your child is entering the school system, that's when I would be advocating to start a 504 plan.
00:28:23.519 --> 00:28:34.559
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.
00:28:34.880 --> 00:28:38.000
Assuming, you know, PKU isn't going away.
00:28:38.160 --> 00:28:50.640
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.
00:28:50.960 --> 00:28:53.680
You you want to establish the need early.
00:28:53.839 --> 00:29:04.400
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.
00:29:04.559 --> 00:29:06.000
There is a learning curve.
00:29:06.319 --> 00:29:17.039
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.
00:29:17.440 --> 00:29:32.000
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.
00:29:32.319 --> 00:29:34.240
So earlier the better.
00:29:34.480 --> 00:29:43.519
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.
00:29:43.759 --> 00:29:52.720
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.
00:29:52.960 --> 00:29:57.599
So the need has to be there before you put it on the plan.
00:29:57.920 --> 00:30:02.880
You know, the idea is we know coming in, children are going to need access to formula.
00:30:03.039 --> 00:30:05.119
That's that that's a given.
00:30:05.359 --> 00:30:08.160
We know they're going to need access to low-protein food.
00:30:08.240 --> 00:30:09.200
That's a given.
00:30:09.440 --> 00:30:12.640
We know they're going to need to track what food they're eating.
00:30:12.720 --> 00:30:13.599
That's a given.
00:30:13.759 --> 00:30:18.079
So these are things that you're very comfortable advocating for immediately.
00:30:18.240 --> 00:30:26.240
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.
00:30:26.480 --> 00:30:28.160
You know, I'm a I'm a fortunate dad.
00:30:28.400 --> 00:30:30.720
Addie is quite gifted academically.
00:30:30.880 --> 00:30:34.640
She doesn't have a need for extra time on tests or things like that yet.
00:30:34.960 --> 00:30:37.200
But I don't have a crystal ball.
00:30:37.359 --> 00:30:41.759
I don't know how PKU is going to affect her brain in the future.
00:30:42.079 --> 00:30:57.440
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.
00:30:57.680 --> 00:31:11.920
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.
00:31:12.240 --> 00:31:13.039
Absolutely.
00:31:13.200 --> 00:31:14.319
And that's a great point.
00:31:14.480 --> 00:31:23.440
I know you mentioned also the schools might be unfamiliar with specific metabolic conditions, so they might seem hesitant possibly.
00:31:23.759 --> 00:31:32.720
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?
00:31:32.880 --> 00:31:33.519
What is this?
00:31:33.680 --> 00:31:34.720
What is PKU?
00:31:34.799 --> 00:31:36.720
Like, what is happening?
00:31:37.839 --> 00:31:44.640
I've personally encountered this too, and I'm certain that everybody out there listening can can relate to this.
00:31:44.880 --> 00:31:50.079
You know, school school people look at Addy and they go, She looks fine.
00:31:50.240 --> 00:31:50.480
Yeah.
00:31:51.039 --> 00:31:51.839
Everything looks great.
00:31:51.920 --> 00:31:52.799
What are you talking about?
00:31:52.880 --> 00:31:53.440
What's wrong here?
00:31:53.519 --> 00:31:54.240
There's nothing wrong here.
00:31:54.480 --> 00:31:55.519
She's got two days.
00:31:55.599 --> 00:31:56.000
She's fine.
00:31:56.799 --> 00:32:02.720
And then it immediately makes them less inclined to, you know, consider and provide supports.
00:32:02.799 --> 00:32:07.920
Yeah, it's part of the reason why I said start as early as possible.
00:32:08.160 --> 00:32:18.640
You know, uh my school district is very small, so I have one person that manages all 504 plans kindergarten through 12th grade.
00:32:18.799 --> 00:32:23.359
And so I'm I'm hoping that this one person stays employed by my school district.
00:32:23.519 --> 00:32:26.400
I mean, for the duration of Addy's time there.
00:32:27.680 --> 00:32:31.279
She's she's going into sixth grade, so I've made it halfway.
00:32:31.519 --> 00:32:46.880
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.
00:32:47.119 --> 00:32:50.559
And so we have developed a really nice shorthand.
00:32:50.720 --> 00:33:02.240
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.
00:33:02.480 --> 00:33:06.960
But that's a working relationship that we've established over half a decade at this point.
00:33:07.119 --> 00:33:26.000
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.
00:33:26.319 --> 00:33:27.440
Absolutely.
00:33:27.680 --> 00:33:35.759
Well, with this all being said, we have a very special, extra special guest that's coming in, who's dear to my heart.
00:33:36.079 --> 00:33:48.799
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?
00:33:49.519 --> 00:33:50.559
Oh boy.
00:33:51.440 --> 00:33:53.759
Um, I'm not gonna get emotional.
00:33:55.920 --> 00:34:00.880
You know, I I kind of tying back to your first question.
00:34:01.039 --> 00:34:12.559
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.
00:34:13.039 --> 00:34:29.360
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.
00:34:29.519 --> 00:34:37.519
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.
00:34:37.679 --> 00:34:44.719
Um, and to see that she feels very supported by the adults, she feels very comfortable around her friends.
00:34:44.880 --> 00:34:56.960
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.
00:34:57.199 --> 00:34:59.199
It is it's like this true.
00:34:59.360 --> 00:35:17.679
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.
00:35:17.840 --> 00:35:25.440
It is it is just a a real point of pride and a real source of joy to see her um be this successful.
00:35:26.719 --> 00:35:30.320
All right, and we are back with our special guest, Addy.
00:35:30.559 --> 00:35:31.280
Hello, Addy.
00:35:31.519 --> 00:35:32.159
How are you?
00:35:32.480 --> 00:35:33.119
I'm good.
00:35:33.360 --> 00:35:33.679
Good.
00:35:33.760 --> 00:35:34.880
How old are you?
00:35:35.199 --> 00:35:36.239
I'm 10.
00:35:36.480 --> 00:35:38.000
And what grade are you going into?
00:35:38.320 --> 00:35:39.679
I'm going into sixth grade.
00:35:39.920 --> 00:35:40.639
That's exciting.
00:35:40.800 --> 00:35:41.599
Are you excited?
00:35:41.920 --> 00:35:43.119
Yes, I'm very excited.
00:35:43.360 --> 00:35:43.679
Good.
00:35:43.840 --> 00:35:46.079
But for now, we're gonna enjoy some summer, right?
00:35:46.400 --> 00:35:48.480
Yes, well-deserved.
00:35:48.800 --> 00:35:49.840
Well-deserved summer.
00:35:50.320 --> 00:35:51.199
There we go.
00:35:51.519 --> 00:35:54.400
Well, we do have some questions for you today, Addy.
00:35:54.800 --> 00:35:56.639
Thank you for joining us first off.
00:35:56.719 --> 00:35:58.079
It is great to have you.
00:35:58.320 --> 00:36:06.639
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.
00:36:06.960 --> 00:36:14.960
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?
00:36:15.840 --> 00:36:20.000
So there's like two key parts of my school day.
00:36:20.159 --> 00:36:22.480
There's the beginning and there's lunch.
00:36:23.039 --> 00:36:47.199
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.
00:36:47.840 --> 00:36:56.159
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.
00:36:56.559 --> 00:37:08.800
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.
00:37:10.159 --> 00:37:18.239
So every morning I'll go through the main entrance and drop off my formula, and like that's part of my 504.
00:37:18.559 --> 00:37:24.320
Like, my formula can't be like sitting in my locker, it needs to go to the nurse every morning.
00:37:24.800 --> 00:37:26.320
Okay, that's good to know.
00:37:26.960 --> 00:37:27.119
Yeah.
00:37:27.599 --> 00:37:29.280
You prefer whole formula, right?
00:37:29.679 --> 00:37:30.079
Yeah.
00:37:30.239 --> 00:37:32.960
I mean, to me, when it's warm, it kind of tastes gross.
00:37:33.199 --> 00:37:34.639
Yeah, makes sense.
00:37:37.679 --> 00:37:40.719
For the second paper, we have lunch.
00:37:41.039 --> 00:37:41.360
Okay.
00:37:41.679 --> 00:37:45.440
And lunch is where I pick up my formula again.
00:37:45.679 --> 00:37:48.159
Where I need to go back to the nurse's office.
00:37:48.480 --> 00:37:52.800
And at our school, it's like fine if you're late to lunch.
00:37:53.119 --> 00:37:58.719
Like, lunch is in an important period, so you can be late.
00:37:59.599 --> 00:38:08.079
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.
00:38:08.480 --> 00:38:13.039
So like it's nice to have friends that like know what's going on.
00:38:13.679 --> 00:38:18.400
Because you know, if I didn't, it'd kind of be weird.
00:38:19.519 --> 00:38:21.920
And when do you get hot lunch from school?
00:38:22.320 --> 00:38:25.119
Um, I have like a little lunch schedule.
00:38:25.440 --> 00:38:33.440
So Monday, Wednesday, and Friday, I get hot lunch, and Tuesday and Thursday I bring in my own lunch.
00:38:33.760 --> 00:38:35.199
That sounds like a great plan.
00:38:36.239 --> 00:38:37.039
Do you like it?
00:38:37.920 --> 00:38:39.119
Honestly, yeah.
00:38:39.360 --> 00:38:50.800
I mean, there has been some times where like they've given me food I don't really like, such as corndogs.
00:38:51.199 --> 00:38:51.360
Okay.
00:38:51.760 --> 00:38:53.360
Which I'll eat them.
00:38:54.000 --> 00:38:55.039
I'll I'll eat them.
00:38:55.119 --> 00:38:56.719
There's nothing wrong with corn dogs.
00:38:57.119 --> 00:38:57.840
I'll eat them.
00:38:58.239 --> 00:38:59.840
But not a favorite.
00:39:00.239 --> 00:39:01.199
Not a favorite, yeah.
00:39:02.480 --> 00:39:07.519
And like my school party, like, this was an example.
00:39:07.840 --> 00:39:11.440
Like, my school party, I had bagels at my school party.
00:39:11.599 --> 00:39:16.480
So I brought in my own bagels, I brought in my own sugar cookies, and I brought fruit for the whole class.
00:39:17.679 --> 00:39:21.199
There's another girl in my class with a 504 plan, she's lactose intolerant.
00:39:21.760 --> 00:39:23.119
So we're friends.
00:39:23.519 --> 00:39:23.760
Okay.
00:39:24.159 --> 00:39:33.280
Like I mean, it's it's really nice, but it was a problem because guess what they gave me for lunch?
00:39:33.519 --> 00:39:33.760
Why?
00:39:34.000 --> 00:39:34.800
Bagels.
00:39:36.639 --> 00:39:39.840
So this is where the corn dog comes back.
00:39:40.079 --> 00:40:02.960
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.
00:40:03.280 --> 00:40:05.920
Yeah, I definitely agree with that.
00:40:06.079 --> 00:40:11.679
There's times where you have to let the cafeteria people know how to cook certain foods.
00:40:11.920 --> 00:40:15.360
Because let's be honest, sometimes it's harder to cook low pro foods.
00:40:15.599 --> 00:40:20.159
Even I have this funny debate still today with my husband.
00:40:20.400 --> 00:40:27.920
I have to put more water in the pot to boil these noodles than regular noodles because they're gonna get sticky.
00:40:28.159 --> 00:40:28.480
Yeah.
00:40:28.719 --> 00:40:30.880
So it's gonna take boil.
00:40:31.440 --> 00:40:33.840
But cooking low pro is harder.
00:40:33.920 --> 00:40:41.360
So sometimes even you, Addy, as this now sixth grader, know how to cook better than cafeteria workers.
00:40:42.159 --> 00:40:47.280
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.
00:40:47.679 --> 00:40:54.079
Things like there's like one or two foods that I like better in the cafeteria than how my dad makes them.
00:40:54.960 --> 00:40:56.400
Yeah, and I take that very personally.
00:40:56.719 --> 00:40:57.599
It's it's weird.
00:40:57.840 --> 00:40:58.719
Come on, dad.
00:40:59.039 --> 00:41:00.239
Why would you take that personally?
00:41:01.760 --> 00:41:02.800
Of course you are.
00:41:03.199 --> 00:41:18.320
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.
00:41:18.480 --> 00:41:20.159
Like, ooh, I like this.
00:41:20.639 --> 00:41:31.440
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.
00:41:31.920 --> 00:41:32.400
Exactly.
00:41:32.719 --> 00:41:34.400
That's true, that's very true.
00:41:34.719 --> 00:41:37.599
And I think your dad as a psychologist could agree.
00:41:38.000 --> 00:41:42.480
I a hundred percent agree as a psychologist and a dad.
00:41:43.599 --> 00:41:46.079
I could tell there's also some law in your family.
00:41:46.320 --> 00:41:46.719
That's it.
00:41:46.880 --> 00:41:47.920
Yes, that's it.
00:41:48.079 --> 00:41:49.440
I know that too.
00:41:49.760 --> 00:41:50.400
All right.
00:41:50.719 --> 00:41:55.840
Well, I wanted to ask you what's the best thing about having PKU at school?
00:41:56.000 --> 00:41:59.440
And is there anything you wish could be a little bit different or easier?
00:42:00.079 --> 00:42:04.320
Honestly, there's literally only one thing that I think I wish could be different.
00:42:05.119 --> 00:42:11.039
I wish, like in elementary school, because this is my first year in middle school, in my school, fifth grade to middle.
00:42:11.440 --> 00:42:15.599
So in elementary school, they like recently just changed this.
00:42:16.480 --> 00:42:24.400
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.
00:42:24.800 --> 00:42:33.840
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.
00:42:34.159 --> 00:42:41.519
And that's actually a perfect example of you know, 504 plans have to evolve based on the building.
00:42:41.760 --> 00:42:55.599
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.
00:42:55.840 --> 00:43:02.800
The nurse's office was the best choice given what we had, but it's still not ideal like it was in elementary school.
00:43:03.039 --> 00:43:13.360
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?
00:43:14.239 --> 00:43:20.079
I I do it was easier back then because like kindergarten that's like basics.
00:43:20.639 --> 00:43:25.360
And she like kindergarten was a weird year for me because of COVID.
00:43:25.679 --> 00:43:36.000
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.
00:43:36.159 --> 00:43:38.400
But obviously, we have a cafeteria now.
00:43:38.639 --> 00:43:45.920
Like where we eat but it it'd be much easier to have an aide to go and do that in the morning.
00:43:46.239 --> 00:43:46.639
Yeah.
00:43:47.199 --> 00:43:48.559
I'm sure it would be.
00:43:48.880 --> 00:43:56.400
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.
00:43:56.800 --> 00:43:59.199
And it's don't get me wrong, it's not hard.
00:43:59.360 --> 00:44:02.320
It's not like My homeroom teacher's like, oh, you're late, what's wrong?
00:44:02.559 --> 00:44:03.519
And I'm not late.
00:44:03.679 --> 00:44:05.840
I've I've never really been late.
00:44:06.320 --> 00:44:14.719
But it's it's just harder because I feel like I'm the last one showing up to class.
00:44:15.039 --> 00:44:17.599
Well, and I also think it's harder because it's just different.
00:44:17.920 --> 00:44:19.119
Yeah, it's it's different.
00:44:19.280 --> 00:44:29.440
He he my dad has a point, but it's also like it feels weirder because in homeroom we have work to do.
00:44:29.519 --> 00:44:31.039
We have like morning work.
00:44:31.280 --> 00:44:36.719
So there there were some days where I just wasn't finishing that because I was at the nurse's office.
00:44:36.880 --> 00:44:41.360
And obviously, it's just like it's like stuff in the Chromebook, stuff in the computer.
00:44:41.599 --> 00:44:47.360
So my teacher's like, it's not that big of a deal, but it'd be nice to still have that extra time.
00:44:47.679 --> 00:44:49.599
Yeah, makes sense.
00:44:49.920 --> 00:44:52.880
Well, with that, let's end on a high note.
00:44:53.119 --> 00:44:55.679
What's your favorite part about having PKO?
00:44:56.559 --> 00:45:01.199
I I honestly like how everybody's so kind about it.
00:45:01.360 --> 00:45:04.239
It's not like I'm getting treated differently.
00:45:04.480 --> 00:45:07.440
It's like I'm I'm a human being at school.
00:45:07.599 --> 00:45:09.119
I'm this I'm just a person.
00:45:09.360 --> 00:45:11.280
There's nothing different about me.
00:45:11.599 --> 00:45:23.920
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.
00:45:24.159 --> 00:45:33.039
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.
00:45:34.880 --> 00:45:35.360
Exactly.
00:45:35.679 --> 00:45:36.800
We all hear it, Addy.
00:45:36.960 --> 00:45:41.760
We all know and and they were just like, So are you a baby?
00:45:42.079 --> 00:45:46.159
And this was like first grade, and I was like, Why would I be a baby?
00:45:46.559 --> 00:45:53.760
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.
00:45:54.000 --> 00:45:58.639
Yeah, because to me this is normal, but to them this is like a whole different thing.
00:45:58.960 --> 00:45:59.519
Yeah.
00:46:00.320 --> 00:46:04.159
But now that we're I don't want to say now that we're all older.
00:46:04.400 --> 00:46:05.280
Well, you are older.
00:46:05.599 --> 00:46:09.599
Now that now that we're all like middle schoolers, yeah.
00:46:09.760 --> 00:46:18.239
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.
00:46:18.559 --> 00:46:19.440
And that's good.
00:46:19.679 --> 00:46:29.840
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.
00:46:30.000 --> 00:46:38.400
I like answering questions, and it just makes me feel happy knowing that like people know and that they care about it.
00:46:38.800 --> 00:46:53.519
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.
00:46:53.840 --> 00:46:58.559
So that friend that you have accommodations with could stick with you forever.
00:46:58.880 --> 00:46:59.679
You never know.
00:47:00.079 --> 00:47:11.599
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.
00:47:11.920 --> 00:47:12.400
Hey.
00:47:13.760 --> 00:47:18.800
Or you meet this little girl at a conference and then she paints you a picture.
00:47:19.119 --> 00:47:20.159
Oh you still have it.
00:47:20.400 --> 00:47:21.360
Oh, you still have it.
00:47:22.800 --> 00:47:25.280
Oh my god, I love it.
00:47:25.679 --> 00:47:28.480
Oh that was when you helped me with the finger prick.
00:47:28.719 --> 00:47:43.679
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.
00:47:43.840 --> 00:47:45.440
But she painted me a photo.
00:47:45.679 --> 00:47:49.039
So connections in the community are everything, right, Addy?
00:47:49.440 --> 00:47:49.760
Yes.
00:47:50.000 --> 00:47:51.199
And that's another cool thing.
00:47:51.280 --> 00:47:52.559
We've traveled the country now.
00:47:53.280 --> 00:47:54.559
We're going all over the place.
00:47:54.800 --> 00:47:58.639
It's like Oregon, Washington, it was Atlanta.
00:47:58.960 --> 00:47:59.440
Atlanta.
00:47:59.599 --> 00:48:00.320
That was when I was little.
00:48:00.719 --> 00:48:01.280
You were baby.
00:48:01.599 --> 00:48:02.880
I was very little in Atlanta.
00:48:02.960 --> 00:48:03.199
Yeah.
00:48:03.440 --> 00:48:16.480
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.
00:48:17.360 --> 00:48:20.559
And it it's just an amazing feeling.
00:48:20.960 --> 00:48:49.280
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.
00:48:49.920 --> 00:48:51.119
Oh boy, are we.
00:48:51.360 --> 00:48:53.280
We're going to labs tomorrow, actually.
00:48:53.519 --> 00:48:53.840
Oh.
00:48:56.239 --> 00:48:59.519
Kicking off the 4th of July weekend with a nice blood draw.
00:48:59.840 --> 00:49:00.480
Yay.
00:49:01.199 --> 00:49:03.039
Hey, red, white, and blue.
00:49:04.559 --> 00:49:05.360
Extra red.
00:49:05.519 --> 00:49:06.079
That's a good one.
00:49:06.400 --> 00:49:07.360
Extra red for you.
00:49:07.519 --> 00:49:07.920
Yes.
00:49:08.159 --> 00:49:12.079
Hey, we're going to there we go.
00:49:12.400 --> 00:49:15.840
Well, thank you so, so, so much, Addy, for coming on.
00:49:16.000 --> 00:49:17.360
I appreciate it.
00:49:17.760 --> 00:49:19.039
You were our star.
00:49:19.760 --> 00:49:22.079
And I have a couple more questions for your dad.
00:49:22.159 --> 00:49:25.119
You're welcome to stay here or disappear.
00:49:25.280 --> 00:49:25.679
You choose.
00:49:25.920 --> 00:49:26.639
Whatever you like.
00:49:26.960 --> 00:49:28.480
But up to you.
00:49:29.199 --> 00:49:37.760
In the meantime, Eugene, as children grow from preschool through high school and beyond, how do their needs for accommodations evolve over time?
00:49:37.920 --> 00:49:46.320
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?
00:49:46.639 --> 00:50:03.679
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.
00:50:04.000 --> 00:50:15.679
Um, you know, 504 plans are something that could follow uh a person through K through 12, into college, throughout their adult life.
00:50:15.920 --> 00:50:25.039
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.
00:50:25.280 --> 00:50:39.440
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.
00:50:39.679 --> 00:50:50.320
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.
00:50:50.480 --> 00:50:58.480
But I think it is important to acknowledge you can carry a 504 plan through from kindergarten to when you retire.
00:50:58.639 --> 00:51:03.280
Um if you if you work in the right environments and advocate.
00:51:03.599 --> 00:51:06.239
Addie and I are gonna be old ladies with our 504s.
00:51:06.480 --> 00:51:07.920
Old ladies with your 504 plans.
00:51:08.000 --> 00:51:08.960
I'm here for it.
00:51:09.840 --> 00:51:10.320
All right.
00:51:10.480 --> 00:51:11.840
Well, that's good to hear too.
00:51:12.000 --> 00:51:19.119
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.
00:51:19.280 --> 00:51:24.400
I know I was able to have the accommodations follow me in college, but that is very interesting.
00:51:24.719 --> 00:51:25.519
Very interesting.
00:51:25.679 --> 00:51:26.880
Thank you for sharing that.
00:51:27.039 --> 00:51:36.719
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?
00:51:37.280 --> 00:51:51.119
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.
00:51:51.360 --> 00:51:59.440
Um it is an added layer of stress and complexity when when we're talking about like our little PKU babies.
00:51:59.679 --> 00:52:14.400
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.
00:52:14.880 --> 00:52:23.280
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.
00:52:23.440 --> 00:52:29.199
It's been really valuable to hear your perspective on what meaningful support can look like in practice.
00:52:29.440 --> 00:52:32.880
And of course, a big thank you to Addy for joining us too.
00:52:33.119 --> 00:52:37.119
Sharing a glimpse of what it's like to be at school a day in your life.
00:52:37.360 --> 00:52:42.639
It's been wonderful to hear directly from you and how support can make a real difference day to day.
00:52:43.440 --> 00:52:47.280
But now is the fun part, and it's time for our community questions.
00:52:47.519 --> 00:52:56.559
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.
00:52:57.119 --> 00:53:02.000
Our questions today are from registered dietitian Rebecca Jennings.
00:53:02.480 --> 00:53:04.159
So here we go with the first question.
00:53:04.239 --> 00:53:04.960
Are you ready?
00:53:05.199 --> 00:53:05.920
I'm ready.
00:53:06.159 --> 00:53:07.360
All right, here we go.
00:53:07.599 --> 00:53:16.480
How can parents effectively prepare teachers, school nurses, and other staff who may have little or no prior experience with PKU?
00:53:17.679 --> 00:53:24.079
The answer is advocate and educate as early as humanly possible.
00:53:24.559 --> 00:53:36.960
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.
00:53:37.199 --> 00:53:47.760
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.
00:53:48.000 --> 00:53:57.199
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.
00:53:57.280 --> 00:54:00.880
Um so they're the stakeholders that you're gonna want to educate on.
00:54:01.039 --> 00:54:02.480
What is PKU?
00:54:02.719 --> 00:54:03.920
What are the needs?
00:54:04.159 --> 00:54:13.119
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?
00:54:13.360 --> 00:54:17.440
The sooner you do it, the more persistent you are, the better.
00:54:17.920 --> 00:54:19.039
Sounds good.
00:54:19.440 --> 00:54:27.920
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.
00:54:28.079 --> 00:54:40.719
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?
00:54:41.360 --> 00:54:46.400
I think it's really important to normalize the experience as early as possible.
00:54:46.639 --> 00:55:02.400
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.
00:55:02.559 --> 00:55:12.079
You know, Addy has an older brother who has his own growing boy nutritional needs that we have to meet as well for him.
00:55:12.239 --> 00:55:16.880
And and his nutritional needs look very different from Addy's, and that's okay.
00:55:17.039 --> 00:55:26.719
Um, and from an early age, teaching your child to the best of their ability to manage their food and their diet independently.
00:55:26.880 --> 00:55:40.239
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.
00:55:40.559 --> 00:55:44.719
Um I I'm gonna share a real proud dad moment from yesterday.
00:55:44.960 --> 00:55:46.400
Oh recently.
00:55:47.440 --> 00:55:50.639
Yesterday it was um my wife's birthday.
00:55:50.880 --> 00:55:52.880
Okay, two days ago, I apologize.
00:55:53.039 --> 00:55:56.400
Two days ago is my wife's birthday, and we were out to dinner.
00:55:56.639 --> 00:56:07.360
Um, and Addy ordered off the menu completely by herself and shared with the the wait staff.
00:56:07.679 --> 00:56:17.039
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.
00:56:17.199 --> 00:56:23.920
And she ordered herself a salad with all the vegetables that she likes and a plate of French fries all by herself.
00:56:24.079 --> 00:56:25.039
I did not help.
00:56:25.280 --> 00:56:26.719
I couldn't have been more proud.
00:56:26.960 --> 00:56:27.679
That's amazing.
00:56:28.480 --> 00:56:40.800
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.
00:56:41.039 --> 00:56:45.599
Um, and and explain it to the wait staff appropriately.
00:56:46.000 --> 00:56:50.800
So this is a real ten years in the making moment.
00:56:50.960 --> 00:56:51.920
Of course you could say something.
00:56:52.639 --> 00:57:06.239
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.
00:57:06.880 --> 00:57:13.679
So this year was like the first year I actually learned how to like do this independently, like totally.
00:57:14.239 --> 00:57:26.559
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.
00:57:27.119 --> 00:57:31.039
They've they've both been amazing, like my whole life.
00:57:31.360 --> 00:57:33.440
They've helped me do everything.
00:57:33.679 --> 00:57:48.400
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.
00:57:48.719 --> 00:57:50.239
Yeah, yes it is.
00:57:50.559 --> 00:57:55.280
But but but that is the answer is practice, practice, practice.
00:57:55.440 --> 00:58:06.159
Don't be afraid to let your child participate or at least observe at their appropriate level for their age and for their ability.
00:58:06.320 --> 00:58:12.239
Um, and and slowly but surely they're gonna they're gonna take the mantle, they're gonna do it all on their own.
00:58:12.400 --> 00:58:13.119
There we go.
00:58:13.360 --> 00:58:17.280
Okay, now I have an added community question from myself to Addy.
00:58:18.000 --> 00:58:21.360
What is your favorite part about being your own advocate?
00:58:21.760 --> 00:58:22.400
Oof.
00:58:22.800 --> 00:58:25.440
I have a lot of being my favorite advocate.
00:58:25.760 --> 00:58:32.880
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.
00:58:33.039 --> 00:58:33.920
I can rely on myself.
00:58:35.039 --> 00:58:36.480
That's a perfect answer for her.
00:58:36.800 --> 00:58:37.440
That's a good answer.
00:58:37.519 --> 00:58:38.079
I'm not gonna lie.
00:58:38.239 --> 00:58:39.039
10 out of 10.
00:58:39.360 --> 00:58:40.400
Good job.
00:58:40.719 --> 00:58:43.119
That's it for our community conversations.
00:58:43.360 --> 00:58:51.519
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.
00:58:51.840 --> 00:58:57.360
Before we wrap up, our aim is to make this podcast feel relevant to the whole metabolic community.
00:58:57.679 --> 00:59:09.440
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.
00:59:09.840 --> 00:59:15.599
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.
00:59:16.000 --> 00:59:23.039
Finally, remember that you can find helpful resources as well as all information from Eugene in the show notes below.
00:59:23.280 --> 00:59:25.599
Thank you for listening and we'll see you next time.
00:59:25.920 --> 00:59:26.480
Bye.
00:59:26.880 --> 00:59:29.840
That's it for today's episode of Metabolically Speaking.
00:59:30.079 --> 00:59:36.880
Rare conditions, real stories, and a reminder that life with a metabolic condition is about living, not limits.
00:59:37.360 --> 00:59:41.760
If today's episode resonated with you, share it with someone who might need to hear it.
00:59:41.920 --> 00:59:44.480
And if you have a moment, please leave us a review.
00:59:44.639 --> 00:59:47.119
It helps others find their way here too.
00:59:47.360 --> 00:59:48.960
We'd love to hear from you.
00:59:49.119 --> 00:59:53.920
If you have feedback, a story to share, or a question, send us an email.
00:59:54.079 --> 00:59:56.400
Find the address in the show notes below.
00:59:56.559 --> 01:00:03.760
And make sure to subscribe to Metabolically Speaking on your favorite podcast platform and tune in each month to join your tribe.
01:00:04.000 --> 01:00:06.320
Breaking barriers and living without limits.
01:00:06.639 --> 01:00:09.519
Thank you for being here, and we'll see you next time.
