Limb Loss and Limb Difference

Transcript

Marsh Naidoo (00:18):

Welcome to the Raising Kellan podcast. My name is Marsh Naidoo and I blog at raisingkellen.org where we curate resources for parents raising children with developmental delay and disabilities.

Marsh Naidoo (00:34):

The information provided on this podcast is for educational purposes only, and if you have questions regarding your specific situation, it's best to seek the advice of a trained professional. Hi Hillary, how are you doing today?

Hillary Sussman (00:55):

I'm great, how are you? Thanks for having me.

Marsh Naidoo (00:58):

You are so welcome. And guys, Hillary Saman is both a physical therapist as well as an author of the Adventures of Roxy book series whose core underlying message is to embrace limb loss and other differences. Welcome to the show Hillary and I cannot wait to hear more about the Adventures of Roxy. To get us kick-started though, can you just give us a little bit about your background and what led to you writing your series?

Hillary Sussman (01:37):

Sure. And thank you for having me Marsh. I live outside of Philadelphia. I've been a physical therapist in the home care setting for over 23 years and these are my first books. I do have a real dog named Roxy, which the book is based on, but she does, she's not missing a leg, her picture and the whole character is based on her. It just kind of was a combination of losing my job cuz of Covid and I've always been able to rhyme and I love animals and my dog had just had a bunch of surgeries. She had two sarcomas removed, she had had two ACL surgeries in the last year or two. So it kind of all came together and I thought of this idea to write this book and then it kind of kept going in a direction that I hadn't really planned. So it's been really awesome.

Marsh Naidoo (02:29):

Hillary April is limb loss and awareness month. Is there a difference between limb loss and limb difference?

Hillary Sussman (02:38):

I think that the term limb difference is more of an umbrella term because you can be born with a limb difference. It can be congenital or it can be as a result of anything, an accident or potentially someone losing circulation or an infection. There's a lot of reasons people lose limbs in their lives and that would be limb loss. So I think they can be used interchangeably, but from what I understand, and I am not an expert nor do I pretend to be, I believe the word limb difference is just kind of constitutes anyone with a limb, anyone missing a limb, whether it is from being born or an circumstance. I want to say

Marsh Naidoo (03:21):

This year the theme for April being limb loss and awareness month is that your ordinary is extraordinary and I love that. Can you tell me more about the activities being that are slate it should take place this month?

Hillary Sussman (03:41):

From what I understand different organizations are doing different things. So I have aligned myself with Elizabeth Stone. She's doing a campaign, it just started on Wednesday called Wear Orange Wednesday. It's just one of the multiple different things going on this month. She is having everyone wear orange on a Wednesday, hashtag wear orange Wednesday, post it, tag it. And her thought on this is the color orange does represent limb loss and lift the limb difference. So this month, that's the color of the month, every organization or has a color, but more so than that we're trying to reach people who have a limb difference or limb loss, but also people who are just able bodied to raise awareness. I don't have a limb difference. I don't know if you do, but me wearing orange yesterday I was at work and even though I'm a physical therapist, no one in my whole building knew anything that it was limb difference awareness funds. So I was able to be like, Hey, I'm wearing orange to represent this cause and to raise awareness and just even by wearing orange and talking about it, it raises more awareness. So I know there's just different campaigns going on just to raise awareness and support

Marsh Naidoo (04:58):

According to the national health council org, there's 500 people or more in the US that lose a limit day and that just seemed to be staggering to me. So that speaks to you talking about limb loss as being something that can either be congenital or acquired and can encompass an individual that is either pediatric or can extend all the way up to a person losing a limb from a peripheral vascular disease, or even a veteran that might have had a traumatic injury.

Hillary Sussman (05:41):

It's funny you brought that up because in the campaign that I was talking about with the liner wand, I just bought my shirt and the shirt has a 5 0 7, the number 5 0 7 on it. And the reason they did that is because 507 actually people a day, you were right on there. So by wearing that shirt people are gonna be like, what is 507? And then you can say what 507 people in the United States lose a day. So it's a great campaign to raise awareness.

Marsh Naidoo (06:10):

Let's talk more about your book series now. You have two books under your wing, so Roxy and is it Malibu?

Hillary Sussman (06:20):

Malibu with an o. O, yep.

Marsh Naidoo (06:22):

It's okay to be different. Can you tell me? I mean, I don't wanna give too much away cause I just think it's an excellent book. Whether you embracing your limb difference or not, it teaches an awesome lesson and that it is okay to be different.

Hillary Sussman (06:40):

I mean any child, especially in the world that we live in, it's so important I think to start very early to teach kids that differences are okay to be celebrated and embraced. A difference can be someone wearing glasses. A difference can be autism, a difference can be trouble reading or it can be physical like a limb difference or anything. So if we teach them early in the book, Roxy loses her leg and then she has to overcome that and then when she goes to the park, she meets a dog missing an ear. And the whole story is about her sharing her story with the other dog and teaching Malibu that it's okay to be different and to embrace himself, embrace his own difference and be confident despite having a difference. So it really can relate to anyone, even though I target the limb, different community a little bit, but it really can be related to all children.

Marsh Naidoo (07:35):

Roxy and Tully: A little bit of background into that book, Hillary

Hillary Sussman (07:43):

Roxy and Tully words matter. Roxy now goes to school, but she's wearing her prosthesis. So it's nice in this book because I can educate kids on what a prosthesis is and what a blade is and it's not about that but it's part of the book. So I just thought that was a nice exposure. Of course, she meets a bully and it's a bull <laugh> and he makes fun of her leg and then the whole story unfolds how all the animals on the playground kind of rally around Roxy and her new friend Clementine who's a pig, and they teach the bully important lessons about the importance of words that they're powerful. The book taught teaches prosthetic awareness and bystander intervention standing up for something if you see it happen, to walk up and try to help or tell someone that kind of lesson.

Marsh Naidoo (08:36):

So what's in store for you, Hillary? The next few months and the next coming year?

Hillary Sussman (08:42):

I'm already thinking about my next book. I have some thoughts, so I'm excited. I've been thinking about my next book and I guess I'll just see where things go. I've been working with prosthetic clinics and pediatric clinics using my book as a resource for their clients, but I'm also doing elementary school programs either on Zoom or in person where I read the book. We interact and I have stuffed dogs of Roxy and Malibu and we talk about differences and there's a lot of printable activities. So those are great tools for educators, parents, parents to print out for free on the website to continue to reinforce the messages after my program.

Marsh Naidoo (09:22):

And guys, Hillary's website is adventuresofroxy.com. Let's see one looking at the amputee coalition org website. There's actually a pretty amazing camp coming up in Tennessee. Guys there is the 2022 Patty Rossbach youth camp, which are for campus aged 10 to 17. That runs from the 3rd of July to the 10th of July. It's gonna be held at the four H Center in Greenville, Tennessee. And there is a webinar coming up on April the 12th to give parents a little bit more information on that camp. And this might really do good for kids that do have those limb differences to get out and network with their peers in a fun outdoor setting. So that's the 2022 Patty Rossbach Youth camp. Are there any words that you would like to end off with Hillary or anything that you would like to educate listeners about?

Hillary Sussman (10:45):

I just think that the more we get, not just my book there are a lot of inclusive books out there. They're starting to come out. I just read 3.4% of books it have disability representation and kids illustrated books. So I think there needs to be more out there, but there are a lot out there. If you can get them into your library, into your schools, just start the dialogue whether your child has a difference or not. If your child does not have a difference, then maybe the dialogue can be about accepting others and if your child does have a difference, it would be more about accepting yourself. So either way it's an important dialogue to start as early as you can and there's super a lot of resources out there.

Marsh Naidoo (11:28):

Would you have a reference point to those books if you don't mind me asking or just the examples? Cuz I would love to share that.

Hillary Sussman (11:37):

Yeah, I have someone actually did a post and included my book so it was so nice of her. So I'll send you that post that has 10 books that share about them differences just cuz of the awareness month. And I'll send that to you if you wanna share it on your Facebook group.

Marsh Naidoo (11:53):

I would love to do that. Yeah, it's amazing meeting you Hillary, and best of luck moving forward in the future. Thank you for all the education, I think we need that as a village. So thank you for the work that you do. Thanks

Hillary Sussman (12:10):

For having me. Nice to meet you.

Marsh Naidoo (12:12):

You too. You take care now. Thank you so much for lending us your ears today. We would appreciate a rate review and a share of this podcast episode. Guys, if there are any specific topics that y'all would like to research, please reach out to me@raisingkiengmail.com. And to stay connected, we have a active Facebook page at Raising Kellan and we have an Instagram and YouTube channel as well at Raising_Kellan. And as always, remember, get to the top of your mountain. This is Marsh Naidoo signing off.