Transcription:

Deborah Howell: You know, being a parent is tough enough, but parents of kids with special needs are really up against it when their child needs healthcare. Today, we'll learn how to navigate healthcare as a special needs parent. I'm Deborah Howell, and today our guest is Lorien Appman, a Physical Therapist and Site Coordinator at High Point Pediatrics. Can you tell us about your passion around this topic?

Lorien Appman: Sure. I have worked in healthcare all of my adult life. And then when I became a parent and my youngest needed to enter the healthcare system, I felt under prepared. And I know my experience may not be the same experience as other parents whose child has difficulties or special needs, but I'm hoping that I can use my experience and my knowledge of both sides of the table to help people navigate through the complications, the questions, the communication with their healthcare providers to provide the best care possible for their child.

Host: And that is lovely because it's hard enough even when your child is so-called a normal child, you know what I mean? So what advice do you have for parents seeking a diagnosis for their child? That's so important.

Lorien Appman: It is. And the first thing is just listening to your gut. So, you know, your child best, I'm a strong believer in that. And if you feel like something, isn't right, they'll put on your detective hat and start taking some notes, gather your concerns and talk to other adults and other people that spend quite a bit of time with your child asking them questions. And then bring these concerns to your pediatrician or your primary care provider, so that you guys can discuss what is going on here. One of the most difficult things is when you start to see your child struggle with things that maybe came easily to another child of yours, or you've seen your friend's children, they're walking in yours isn't, or their child is speaking and yours is not. It can bring up all sorts of emotions. It's really important to write down your concerns, gather your thoughts, and then present them to the pediatrician. Once we do that as a parent, you're like, okay, here's the information. Here's what I want you to know. Now tell me what's wrong with my child. And unfortunately that's not necessarily the way it works. A lot of these symptoms and a lot of disabilities and or challenges develop over time.

And what you're doing is you're presenting your pediatrician with pieces of a puzzle. And the picture isn't clear yet the provider may order tests. There may be blood work and x-rays, and depending on the issue, lots of different special tests, or it may be more of a wait and see approach. So piece of advice I give to parents is don't expect a diagnosis right off the bat. That's not realistic. Most of the time the diagnoses are going to come as the pieces of those puzzle comes together and then begins to form a more clear picture. A frequent diagnosis that we see at high point in pediatrics is autism. And a lot of those kiddos, the suspicions maybe that something wasn't right, or an initial diagnosis of anxiety or sensory processing disorder may have come early at three, four, but the true autism diagnosis, that picture may not fully emerge until seven or eight. So that can be a long time that you are treating the child for the symptoms of the greater picture. But again, it's all about gathering clues. It's all about advocating for the best for your child. And then letting that picture develop.

Host: We have this exact situation in our family where we're trying to determine whether our grand nephew is or is not autistic and he's five. And he's just so right on the edge. So you just have to keep at it. Maybe keep a little diary at home and keep asking questions. And that's my next question to you. How can parents best communicate their concerns with their pediatrician?

Lorien Appman: This is where being a parent, we want to go and we want to fight for our children. And I remember when my daughter's diagnosis first came, it was like, I'm going to be a warrior. And I am going to fight for her and I'm going to advocate for her, and that's not wrong, but I would challenge parents to maybe change their perspective. When you go into a doctor's office or a therapy clinic or any provider that you're seeking out care with, and you put on this armor of I'm going to fight, you are setting yourself up for maybe some conflict. I'd like to change the narrative. And I like to do this with anybody coming in here. And I like to do this when I'm working with other providers, with my child, as I say, okay, here's the issue? Here's the concern. We're on this side together. So let's put this problem in front of us and let's start pushing rather than it become this tug of war of you do this. I'm going to do this. No, you do this.

And we're just pushing the problem back and forth between us. I like to give the provider or give the parent the visual of let's get behind this together. And let's see what kind of momentum we can get working together. As a parent, you're approaching a caregiver, a clinician with your child's symptoms or with their diagnosis, or with your concerns, say, what tools do you need? Or what information do you need so that you can help my child and what tools and information can you give me so that I can help my child. And you're immediately then going to get a response from that clinician or that caregiver that's going to help you best advocate for your child. Just even the mindset walking in of this is teamwork, we're in this together, we both want what's best for the child. Asking questions is so important. So writing down your list of questions, you'll go through your appointment. You'll get through your visit and more will bubble up in your head that evening.

So, before you leave your pediatrician's office or the clinician's office say, how is it best for me to communicate with you if I have questions outside of our visit, do you prefer messaging through my chart? Do you prefer me to call and leave a message for your nurse? I want to know how best we can open this line of communication, and they're going to respond to you with their preferred method. And that's going to get you much better results when you do have to ask questions after hours.

Host: That is such good advice. Lorien now what if my child needs special tests or procedures?

Lorien Appman: When those are being scheduled, of course, you're going to want to have to call your insurance. Let's find out who's in network and where do they want you to go? And then you're going to call that particular office. So let's say it's lab work. They're going to have to draw blood and run labs. And your child is four or five years old. We're already dealing with anxiety. We're already dealing with some behavioral issues. You're going to want to set your child up for success. I would call the provider ahead of time, call the lab and say, I'm bringing in my son. He has these particular issues. He's never had blood work before. Are you prepared for this? So you're giving them an opportunity to set up their staffing, to set up a room that would accommodate your child. And then they may come back to you and say, I cannot accommodate this. Let me refer you to lab that's down the street.

And so, then you might have to start the process over again, but at least then you've saved yourself and your child from maybe a not so great experience. If the tests are more involved, so we're talking, x-rays MRIs, CT scans, or if any anesthesia needs to be involved, then you're most likely looking at a hospital system. And most hospital systems have what they call child life specialists. And so these are folks whose sole job is to help the child through anxiety around medical procedures. If you are facing something that's a little bit more involved than a simple x-ray or simple blood draw, you're going to need to go into the hospital for a test, ask if they have a child life specialist. And if you could speak with them before the event, and then if they could be there, they can help calm down the child and just really make your experience go much smoother.

Host: How can I be an advocate for my child?

Lorien Appman: The best way to advocate for your child is to put on your optimism cap, right? And not that we want to look at the world in all Rose colored glasses, but if we're going to work together with people in the healthcare community, in our community, and in our schools, I want to approach every person that's involved in my child's care. They're doing the best that they can, and they have my child's best interests at heart. And if we start from that point, everything tends to go a little bit smoother from then on out. You're going to open those lines of communication, ask lots of questions. And really, again, I can't stress enough that you listen to your gut. So if you are working with a provider or you're working with somebody and you just feel like something's not going well, you feel free to explore and ask other options, get second opinions.

Your intuition is going to guide you quite a bit and then seek out opinions, seek out opinions of other caregivers, seek out opinions of other families that are in the same position, even in the time of COVID and isolation. There are a lot of online groups of support out there, more so now than ever before. So if you can tap into some of those communities and get the support of other parents who have been through the same thing or even children that were diagnosed and now have grown into adulthood, and they participate in these support groups and online groups for different diagnoses, they may have some great insight of here's something that my mom did, or my parents did when I was young that really helped me. And that kind of advice is great. And again, every situation is going to be different, but at least, you know, you're not alone. At least, you know that there are other options, other ideas out there, and you've got someone to talk to.

Host: Right. Don't isolate for sure. Well, this is such excellent information, Lorien, you know, I have time for one more question for you. What do you hope to bring to families that come to you?

Lorien Appman: I hope when a family walks into the doors at High Point Pediatrics, that we are able to treat them with respect and support that we are a member of their healthcare team to help propel the child into better times and into greater functioning, whether that's at home or at school. And then I also hope that we are a support system for the entire family, so that the mom knows she can call with any questions. Dad knows that he can come and be a part of a therapy session and really learn what he could do at home to help his child better. So I'm hoping that when families come here, that they feel how much we want their child to succeed and that we are able to support them in getting that done

Host: Well, Lorien, I can't thank you enough for sharing this information with us today and for taking the time to be on the podcast. Thank you so much.

Lorien Appman: Thank you.

Host: This is Deaconess, The Women's Hospital, a place for all your life. For more information, please contact us at deaconess.com/highpoint or call (812) 842-2820 I'm Debra Howell. Thanks for listening and have yourself a terrific day.