Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Empowering Parents: Navigating School Preparation for Children with Complex Medical Needs
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Imagine facing the overwhelming task of preparing your child with complex medical needs for school. Emily knows this journey all too well with her daughter Charlotte, and in this heartfelt episode of Empowered by Hope, she shares her invaluable experiences. From dealing with feeding tubes and medications to navigating physical limitations, Emily and Ashlyn provide practical strategies and compassionate insights to help you become a confident advocate for your child within the school system. Learn how to tailor educational experiences that allow your child to grow, develop, and genuinely enjoy their learning journey despite the challenges they face.
We also discuss the critical role of parental advocacy, offering three essential tips that can make a world of difference. Find out how to secure an intervention specialist, leverage the power of parent support groups, and trust your instincts to ensure your child's needs are met effectively. Emily's firsthand advice underscores the importance of speaking up and recognizing that each child's school journey is unique—it's perfectly okay for their path to look different from others. Join us for this supportive and empowering conversation, and don't forget to subscribe, share your stories, and spread the word to those who might benefit from this invaluable guidance.
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Whether you've just been blindsided by your child's diagnosis, or you've been in the trenches of their complex medical needs for a while.
Speaker 1:Empowered by Hope, is here for you, though we wish you didn't know this heartache.
Speaker 2:We're so glad you found us, so together we can walk this journey in hope.
Speaker 1:Hello, welcome to the Empowered by Hope podcast. It's your co-hosts, ashlyn and Emily, and let me tell you it is no small feat that this episode is coming to you today, because Emily and I have been trying to record for what over two weeks now? Yes, to get one episode in. Yes, and that just goes to show that life is always moving on, with or without you, and regardless of best laid plans, life is going to happen and we have to be ready to adjust and we have so glad and we are going to be talking about what it's like going to school with your kiddo, prepping for going to school, and, emily, you are on week two with Charlotte going back to school, actually going back to public school, right, well, it's private school, but you did homeschooling this last year.
Speaker 1:Yeah, yes, did everybody hear that? Yes, in case you haven't been with us before, emily was homeschooling last year like an incredible super mom. Black belt boss If anybody knew.
Speaker 2:If anybody listening to this knows who Emily is, they'll be like excuse me, she did what.
Speaker 1:And you did it fantastically. You did it well enough that your child was ready to go into school this year. So, emily, why don't you talk us through what our main points are going to be in this conversation? And I am just going to be here to listen and support this conversation because your, your experiences looked a little bit different than mine this year.
Speaker 2:Although I will say I definitely want our our listeners to hear your experience too of um just the emotional rollercoaster of everything. With Emory, too, you have. You have had your own set of unique challenges.
Speaker 1:Yes, we did, and some wins. Some wins Maybe we'll share. If we have enough time at the end we'll share some quick wins.
Speaker 2:I love that plan, yes, and with a note of great hope, because that's what we're all about Empowered by Hope. So today, ladies and gentlemen, what we're going to talk about yes, as Ashlyn said, is prepping for school or getting through the first few weeks of school at this point with a child with complex medical needs. So I have three kiddos and one on the way, so four I suppose. But sorry, I just got really derailed by that point. Yay, emily's pregnant. Yeah, I guess I never announced that till now. There we go, okay, so anyway. Yeah, I guess I never announced that till now. There we go, okay, so, anyway. So Charlotte is in first grade this year, liam's kindergarten and Eden is preschool and last year, as Ashlyn said, we homeschooled. Due to all the medical scheduling and challenges and needs for Charlotte, it just was like I tried, I tried really hard to be able to send her and it just didn't end up working out. But what we're going to talk about today is all the unique aspects of sending a child with complex needs to school and, of course, I guess I shouldn't say all, because that would be like an entire series of episodes, right, but the unique things that we as parents have to think through and work through to prepare our child for school is really an astronomical feat. And when I look back, over the last month it has basically been a full-time job of mine, on top of the job of Charlotte's Hope Foundation, on top of the medical management of Charlotte, to prepare her for school. And I was really excited today, ashlyn, I actually fired off two emails this morning. That tied some pretty little bows on some of those aspects of preparation. That was like, oh, thank you, jesus.
Speaker 2:Okay, so a few things. What we're going to talk about is who do you talk to within the school to really help you navigate? You know these complex and unique needs for your child at the school. Two, we're going to talk about when you feel something's off, voice it, and you know how do you do that and do it with confidence, because we're really used to advocating in the medical world and now we have to learn how to voice things in the school too, which is a whole different, whole nother ballgame.
Speaker 2:And then, number three, we're going to talk about remembering and this is something I have to beat into my head that our kids' school journey may look really different than our own, and then many of their peers as well, and that's okay. And so then, that helps us really figure out how to choose our battles and figure out how to help our child navigate school to be a positive learning experience and keep our focus on that end goal of helping our child grow and develop to the best of their own ability and to enjoy learning right, keeping that in mind. So that's what we're going to talk about and we're going to attempt to do it in 15 minutes. So here we go, on your mark, get set. Yeah, right, how fast can you talk?
Speaker 1:No, I'm just kidding.
Speaker 2:So a few things. If any of you are like oh, I wonder what are some of the things you would think about if you're sending a child off with complex needs. Let's say your kid is still not in school age and you haven't thought about this yet, or maybe you're in the throes of that You're going to be thinking about. Are there physical limitations? Do we have a wheelchair? Does that affect transportation? Does it affect how you navigate the actual school building? All those things? What about feeding tubes? What about medications? So medical needs throughout the day, something I learned the hard way. When you're the one managing everything at home and you're used to being a hundred percent, you know, like in charge at home, it's very tricky to then be like oh, now there's a school nurse and I need like forms from the doctor signed saying this is how you do things, which is actually a funny joke. I'll tell you about that later. But anyway, do you need any special medical equipment for school? Do you need to order extra durable medical equipment so that there's a stash at school and a stash at home? These are all things that we had to do. My gosh, I need a nap. Do you need to worry?
Speaker 2:You know a lot of things that are a lot of things that we're often aware of as parents is peer acceptance. Is there something to be proactive about there, or is it just, you know, kind of wait and see? Another aspect is prepping your child to feel safe and well cared for at school, because your kid is really smart and they know you take great care of them. And I don't know this for a fact, but I have a feeling children with complex needs, their separation anxiety, I would imagine, is in general, higher than those who don't have complex needs, because they know they have a strong dependence on mom and dad. Well, I maybe don't have any research to back that statement up, but I do know sample size of one Charlotte is 100%. Yes, very high separation anxiety.
Speaker 2:Sample size of two Emery Definitely has a higher degree, excellent I mean not excellent, but point proven. And then the other aspect is juggling the school schedule with the medical schedule, right Of, like all the appointments and all the different things that need taking care of, you know, and when it comes to medical equipment, it's, it's the hearing aid, it's the amplification system for the school, it's, you know, so many things depending on what your child's facing. So if y'all have anxiety now after I listed all that, I'm so sorry. So if y'all have anxiety now after I listed all that.
Speaker 1:I'm so sorry I might have a little bit. I'm not going to lie. I think my heart rate is up a bit.
Speaker 2:I know. So if you've wondered why I've been a crazy person the last month, Ashlyn, there you go. That's why.
Speaker 1:No, I never wonder, to be honest.
Speaker 2:You always know why. So, okay, back to point number one and I by no means am an expert, as you well know I just said Charlotte's going into first grade. We're only a couple of years into this. I know we could have plenty of guests on this podcast who would know a lot more about schooling, and I know there's even organizations out there who can help you navigate schooling, which would be fun to look up and put in our notes for this episode.
Speaker 2:But one person, one title that I know has been our best friend, is the intervention specialist, and so I guess tip number one is, if you have a child with complex needs, you can start with the teacher and the principal but ask them you know, okay, we have these complex needs.
Speaker 2:Who do we need to talk to?
Speaker 2:And oftentimes it's going to be the intervention specialist.
Speaker 2:They're going to help with you know the IEP and the medical plan and they're going to help with whatever equipment is needed and all those things.
Speaker 2:And what I've learned, thankfully, in our schooling experience, this has been pre like, the intervention specialist has organized a meeting with all key players for the school day before school starts, where I come in, all the key players come in I'm talking like principal intervention specialist teacher, maybe it's a student aid school nurse we all sit down.
Speaker 2:Maybe it's even the speech therapist whoever it is that you need for intervention, we all sit down and we talk about the plan for the year. So if that is not offered to you, I highly recommend you request it, because it is massively helpful to help everybody be on the same team and everybody pull in the same direction, and it helps you as a parent to take a deep breath and go my kid's in good hands right, like that was my big benefit after that meeting. So yeah, tip one is find who your best friend is going to be within the school to help you, and oftentimes the title of that person is going to be intervention specialists and and if they haven't already initiated a meeting with key players, you have the ability to ask for that.
Speaker 1:Right, hey, emily, yeah, just a thought. So I know I've seen these conversations take place in, uh, some of the specialized parent support groups I'm in for, since we do have a specific condition. If you do have a child that has you know a specific diagnosis, or has you know diagnoses that have support groups that you're in, it's probably not a bad idea to you know. Search through some of those conversation boards or just ask any parents who have children who are older than yours, who've already gone through school. Ask them maybe for some call outs to think about when working on your IEP, because we don't know what we don't know, and sometimes that's one of the best ways that we can help advocate together.
Speaker 1:Learn from one another is by using the experience of those who've gone before us and gleaning some of that help from them so that our child can have as smooth a transition as possible, knowing good and well. There's going to be bumps along the way. It's not going to be done exactly how you would do it at home. It's not going to be done exactly how you would do it at home. It's not going to be perfect, but the more proactive we can be, the more knowledge we have, I think, the more empowered and comfortable we can be, as well as, more importantly, the more empowered our child can be to advocate for their needs at school.
Speaker 2:Yeah, absolutely Absolutely, and that's some of the fun things that you can discuss in that meeting too is things like okay if your child has trouble with anxiety or maybe pain in our case it's chronic pain this if she lifts up this card, then I know she's telling me she's in pain and this is going to be our plan or whatever.
Speaker 2:So and these, and that's the kind of thing that helps you feel empowered and your child to know that when I go to school I'm going to be well cared for. It's not going to be mom, it's not going to be dad, but it's going to be as as good as it possibly can be. So that's a great point and I and I don't want to go too much on a tangent because I know I'm trying to, you know, not make this a really long podcast. But another thing that kind of rang a bell in my head, ashlyn, is in regards to worrying or trying to help your child with peer acceptance. What I have found is, within those organizations or groups of parents with similar diagnoses, I've found a lot of support in that. So, specifically for Charlotte, she has cleft lip and cleft palate and oftentimes that involves a speech, um impairment, sometimes hearing loss, et cetera, et cetera, in our case, all of the above and so, um, the parents on there talk often about different ways they've helped their child and their class to learn about cleft lip and cleft palate and make it very much a normal thing. So it's not like this oh, she has cleft, you know, and I have not had to use any of those tips yet, but I found a lot of comfort in knowing like, oh, people have already done this, they already know how to help their kid navigate it, and so when I get to that place I'm going to go back to this page and find tips, okay. So point number two, and this is something we say like in every episode if you fail, that something is off, voice it. And this is something we talk about a ton in the medical world, and it's no different in the school, because you, as mom or dad or caregiver, you're the most in tune to what your child needs, to what your child's feeling, their physical aspect needs, all those things. And while all the school professionals are doing the best they can, they might not know your kid that well. So if there's something that feels off, voice it, and there's always a really, really nice professional way to do it right. It's never blaming or anything. It's finding who's the right person to talk to about this within the school so that we can have a constructive conversation to to go from here.
Speaker 2:I actually had one of these conversations last week and I won't go into detail because then this will be a 45 minute episode and I was really nervous about like, who do I voice this to? How do I not make it dramatic? And I talked about it with my husband and he was like, just talk, talk to the principal and have you know, just tell him. This is something I'm worried about, what? What should we do? Is there a good plan we could put in place? And it ended up being such a beneficial conversation. Okay.
Speaker 2:So point number one find your person within the school, probably intervention specialist. Point number two if something feels off, voice it. And then point number three and this one is a really big one is to just remember your child's school journey might look different than yours, and then their peers, and that's totally okay. I had to wrestle with this a lot when we were discerning whether we would homeschool last year or not. Homeschooling had never really been something that crossed my mind before, but then it became really necessary and it ended up being a beautiful thing for our family and I'm also really grateful to not do it this year. But someday I'll probably have to do it again and it'll be good, we'll be fine.
Speaker 2:But I think bigger than what kind of school your child goes to or where they get their education. It's also just knowing that Okay, like for okay. So a good example, and I'm just going to be really honest and vulnerable here I grew up being used to getting straight A's and it wasn't until the last couple and I don't say that like full of myself, I mean like my, my standards for myself were crazy high, shocker, oh no. So what I have to really do for my kids and this probably goes for any parent and especially ones with complex needs is, like our goal of going to school is not to get straight A's right.
Speaker 2:Our goal is to really be excited about learning and to grow, and for us it's very important that they learn to grow closer to Christ and they learn a relationship with him and that they are set off on the path to be able to pursue him for the rest of their life. If that is done, mission accomplished. And so I have to really remind myself like, okay, if she gets an A, she gets a B, she gets a C. I don't know, I'm not going to worry about it so much, I'm going to help her to really enjoy learning, and so that is a huge shift for me and some of you are probably like oh my gosh, emily, you're so annoying for your high standards. I'm sorry, but that's just an example. You probably have your own set of you know kind of preconceived thoughts going into school that we just have to remember like in the end, our child's school journey is going to look a little different, probably, and that's okay, right.
Speaker 1:I think it's really important in all things to tailor our hopes and our expectations for our child based on their child, not based on our own wants and desires. It's to like how do we set them up for success and what does success mean for them? Yeah, and you know, success could be for some children, literally being able to go to a different environment outside the home.
Speaker 2:Yeah.
Speaker 1:Like you know, being outside of the house and being around other children, other adults, that could be a huge feat. Being able to work, you know, work through separation anxiety could be a huge feat. Being able to work through separation anxiety could be a huge win. Being able to stay healthy outside of the home would be another big win. Gaining new friendships there's so many other wins to look for, but school really, I mean the academic portion.
Speaker 1:Yes, that is certainly a part, but I think, just remembering, like you said, emily, every child's journey is going to look different and that totally applies to their academic career. And just being okay with you know which is easier said than done. I understand Sometimes I did not have the same high standards as Emily when it came to grades. Mine were more like get through school. I didn't have my ADHD diagnosed till later in life, so looking back, that probably explains some of it. But yeah, just being okay with your goals for your children are probably very different than your goals were for yourself. Or maybe even if you have another child or other children who don't have those same medical complexities that they have to overcome, just letting each child be their own individual selves and setting appropriate goals for them and, if possible, when appropriate, letting them set goals for themselves.
Speaker 2:You know what I love that last point. So when I was homeschooling last year, I followed a homeschooling podcast and one of the biggest things they said that helped me a bunch because, let's just face it, teaching a kid to read in kindergarten is actually a lot of work. Sounds easy Not easy at all, and I was feeling really defeated and like I was a terrible teacher and, oh my gosh, am I even capable of this? Whatever. Anyway, she said in her podcast to sit down and make goals with your child and that that way they can start to own it. And it's not just oh, mom's coming again to teach me X, y, z. I got to. You know I'm going to either fight it or I have to muscle through it, whatever, but it's same with school, like, can we help set goals for our children with them? Can we sit down and discuss what is your goal? Now, this is very dependent on ability, right, but I think you know like, okay, so a good example, and this wasn't even intentional, actually, but it was a huge win this morning.
Speaker 2:So Charlotte's been dealing with a lot of separation anxiety for really obvious reasons, and this morning she was really upset at first and then she kind of got this aha moment and she goes mom, I just realized by the time we get to lunch then the day goes really fast. And then you come, so the day goes really fast. So I'm just going to remember that and it was like a 180 in her brain and all of a sudden it was huge and it was like watching her coach herself through. It was so cool. So you know and I think in with that as an example, to be able to say like, okay, I know, leaving mom for the day is really hard. What do you think will help you get through it? Is it drawing a picture of me so that you can show, or of what you're doing so you can show me when you get home? Is it? Is it remembering that the day goes fast? Is it taking a picture of your family with you? Whatever, I don't know.
Speaker 2:And I also know we share all this, fully, knowing we have some listeners who don't get to have the luxury, the joy of sending their kids to a physical school due to all the medical complexities, school due to all the medical complexities, and so we're here with you for that and just want you to know that we see you and we're with you and we're supporting all of you, cheering you through this next school year. And so the top tips for school prep with children with complex medical needs is find that person in the school who will help you usually an intervention specialist, that person in the school who will help you usually an intervention specialist. Second one is if something feels off, voice it. And third is to remember your child's school journey might look different and that's a-okay, we'll catch you guys next time, hopefully with less technology issues. You are capable, you are equipped and you are not alone. Together we can do hard things for our children.
Speaker 1:If this episode connected with you and you want to hear more, be sure to hit the subscribe button.
Speaker 2:We would also love to learn about your personal journey and how we can support you.
Speaker 1:Reach out to us at contact at charlotteshopefoundationorg.
Speaker 2:And last but not least, if you know of someone who could benefit from this podcast, please share.
