The Landscape
The Landscape
Beth's Umbrella - Loving My Sister with Special Needs: by Josiah Evans
Fourteen year old Josiah Evans speaks about his published children's book, Beth's Umbrella: Loving My Sister with Special Needs, a book that can help families have important conversations with their own children. Beth's Umbrella can be found on Amazon in paperback, or as a Kindle download, so don't miss out!
Welcome to the landscape, a podcast to shed light on the people, programs and businesses. They're changing the landscape for individuals with any type of disability. I'm your host and avail. Dar today is going to be a special episode. You'll hear very little from me and we will have a youth takeover of the podcast. My wife brought home a children's book called Beth Sunbrella, loving my sister with special needs. And she asked me to take a look at it. Um, what impressed me most about the book was it, it was written by a Ben 12 year old, um, who validated emotions such as feeling less loved because their sibling required more attention from their parents. And therefore the book helped families to process that. Additionally, the author himself has ADHD and a metabolic disorder, um, which can cause him long stays in the hospital. So for this episode, you will hear my teenage daughter reading the author Josiah's book, as Josiah speaks about the issues that he brings up the book can be found on Amazon and paperback, or as a Kindle download. Before I turned the episode over, if you like other content, including pictures of Josiah and his sister, you can follow me on Instagram or Facebook under the landscape podcast. And lastly, as the podcast continues to spread around the globe, I want it to start thanking listeners who continue to be very supportive. Um, this time around, I wanted to give a shout out to a cluster of very loyal listeners from cor d'Alene Idaho and from mountain view California. So now we will start this episode with Josiah speaking about two other children's books he's working on, and then why he wrote Beth Sunbrella.
Speaker 2:One of my books I'm writing about is having ADHD because had an HD ADHD can also be really hard because you're impulsive. Like in my house, sometimes I'm going crazy. I don't even realize it or I'm not hearing, um, somebody that's talking to me or I forget. I normally forget a lot of things when I'm, um, have ADHD. That's one of my books. And then I'm writing a book about my medical experiences. Um, cause I have a disorder called ISO Boudreaux, coenzyme, the hydrogens deficiency, and that's a metabolic disorder. So if I get really sick, then a lot of the times I have to go to the hospital. And so being at the hospital can be really hard. Like when I was young, I was actually scared a lot at the hospital because it's kind of terrifying because you know, there's Divea and the glucose monitor prick, and they're taking blood out of you and they're doing tests on you. It's it can be kind of scary. Um, so I'm writing a book about that. Um, what the things are for how they help us and how to understand them and cope with it. One of the main reasons I wrote this book was quite a few people. They have special needs siblings or someone they know they have special needs, like a relative, a family member was for people to understand that you're not alone. It's going to be okay. It's difficult, but your love just as much
Speaker 3:Sunbrella loving my sister with special needs by Josiah Evans and Kristin hammer Evans. My name is Josiah. I'm 12 years old. I have a special needs, little sister named Beth. My sister is different than most children. Beth has trouble doing things like walking, talking, and eating. She even wears special glasses to help her see, do you have a special needs brother or sister? What is your brother or sister like
Speaker 2:A typical baby children. They don't have a nurse going to check up on her and a feeding tube. And she was also on oxygen, uh, for some points of her early life. Luckily she went off oxygen. Um, I don't remember what it was, but pretty. She went off oxygen pretty young when she was young. She used to wear braces, which they, it turns out they were actually worse for her, but she wore braces to help her with her PT. She had to go to feeding therapy because she, it was really, it's really hard for her to eat and she wasn't able to eat till like we moved to our house in Nashville. Um, that would have been probably in 2014 or probably later than that. Actually she didn't, she started going really slow. And so she got most of her food from her milk. Um, she always needed help with putting on her clothes, putting on her shoes, giving her baths. She still does today a lot of the times, but she started, she's starting to do really well with that. She's um, she's starting to put her shoes on, she's doing her clothes, but she still needs help of her baths hide and seek to this day was not very successful because if I was the one that was going to hide, she'd be tell her to be in a room. This was mainly at our house, this, uh, closer to now, but she would go, she goes in her room and then she opens the door too early and she sees me. So, and she, she, she can't really hide, but, um, she started, I wouldn't say she started walking around three or four ECI. I think
Speaker 3:Sometimes my sister needs to go to the doctor or hospital when Beth was a baby, she needed to stay in the hospital for a long time. When she finally came home for the first time I saw that she has a white button on her belly. We put milk into the special tube every day. How does your brother or sister get milk? Does your brother or sister need to go to the doctor? Sometimes?
Speaker 2:So when my sister came home for the first day, I was seen on our front porch, in my house in Moorsetown. Yes, she was in this little black stroller. And there's this little sentence that said that she, she shouldn't be touched. It was like a red caution sign, but that was kind of odd. And my parents were telling me about her and she was in this little, um, dress. Um, and I was wearing a shirt that showed in the book it's on the brig butter shirt. And she had I'm the big sister shirt on which really, it really forms a memories for me. Um, and when she started living at our house, um, she normally would be sitting like she she'd be sitting down in this little pink chair, little pink baby rocking chair. And my parents would feed her, uh, her, her bolus or her milk in that's where the tube was. And so that's how I know she had a tube. She was really tiny at the time. She definitely had trouble walking and she had, uh, about 24 hours nursing. She had a few hours off, but she had a night nurse in a day nurse pretty much every day. And so they would, they be sitting in the living room and then if they, if Beth needed something, they would go check up on her and cause she was on a feeding machine too. Uh, and so the nurses went over there and kind of took care of her, change her diaper if she needed it, make sure the bullets machine was going good. Um, that'd be, that'd be about four, uh, maybe just a little bit under. So I was really, I was really young at the time. Um, and so I was there for my dad and when she came home and my grandfather was there as well, pretty much my whole family, we were sitting on our porch. We just saw her come up.
Speaker 3:Sometimes there are stormy days when it is hard to have a special needs sibling, I might get mad or sad or feel upset. It frustrates me when my sister pinches me. And when I do not understand what she is trying to say, I may even get really mad or sad sometimes too. And that's okay. Have you ever felt sad or mad because of your brother or sister? What is hard for you about having a special needs sibling? What other feelings do you sometimes feel about your brother or sister?
Speaker 2:She can't say like full words, but she can say words and I, I can interpret it used to be that I couldn't really interpret it. She would point, um, she knew a few signs, so she we've kind of moved away from science, but she still does a few. Do you normally points? Um, and I, I just kind of, she understands what I'm saying. So it may take a little bit longer for me to understand her or a few times for her to say it, but normally I can understand what she's saying after awhile
Speaker 3:When Beth is sick and needs more help. I'm worried about her. And I feel like I'm not as important as she is to my parents. Sometimes I feel like my parents do not love me as much as my sister. You two might feel like your parents do not love you as much as your sibling, but they do. You might not get all the time and attention that you want from your parents because of your brother or sister
Speaker 2:One stormy day would be, um, jeez, she was riding an ambulance. My mom or dad had to go with her. And so I was at home normally and without my sister. And that was kind of the stormy day. Cause I be always concerned about her and be kind of scared what was going to happen to her. And then another stormy day would be, I feel like she, like I said, she is nurses. And so it felt like that she was getting a lot more attention than me. Um, so I felt not as special or cared for as loved, but I think that would be a good representation of a stormy day.
Speaker 3:Your sibling might need a little extra help sometimes to help them learn and grow and to keep them healthy and strong. Your parents will love and care for you, even if it does not seem like they spend as much time taking care of you. Do you ever feel like your sibling takes more of your parents' time? When do you feel loved by your parents?
Speaker 2:Um, we do things more as a family now. Um, we play like we have a few games Beth can play together or like we play a game called settlers of Catan and uh, my, my sister helps roll the dice so that she's having fun. We're all having fun. So that's one of the main things. Uh, sometimes I kind of be alone for awhile. I get, I distract myself like I'll watch a show or listen to music or work on something or play a video game to distract myself. Um, but we love to go to the beach, um, and swim. Um, she loves the pole. I L I love the pool. Uh, my favorite vacation was vacation in Cancun cause there is a beach. It was really nice wetter. Um, we had a nice hotel room. It was really nice. Just a, um, you know, sit back, relax. Cause it kinda took my mind off everything. I could just like sit in the sand or swim and just being peace. I suppose.
Speaker 3:I love the sunny days where my sister is healthy and we have fun playing together. We play with purple green, blue and orange Candyland shapes, roll a light up ball, have dance parties, play hide, and seek and build with different colored plastic blocks. We also have fun swinging outside together. Beth smiles and giggles. When we play in this makes me happy. How do you have fun with your brother or sister? What do you like to play together? How do you know when they are happy?
Speaker 2:A good day looks like, um, my sister is in a happy mood. Um, a good day would look like we get to spend a lot of time together. We could do it. We get to have fun together. Just kind of easy going. We can, we can play together. Like cause some days she she's, um, doesn't even allow me to touch her toys. And so, cause I want to play with her and like she has a doc McStuffins ambulance hospital set. Some days she'll allow me to play like that. That's really what a good day looks like. She's in a good mood. Uh, we can play together and we're all having fun.
Speaker 3:I helped my sister every day. I help Beth by feeding her, playing with her, encouraging her to learn how to talk and even teaching her how to use her pink tablet. You can help your special needs brother or sister too. There are many ways you can help. My sister needs help with walking and putting on her shoes. What are some things your brother or sister needs help doing? How can you help your sibling?
Speaker 2:She always needed help with putting on her clothes, putting on her shoes, giving her baths. She still does today. A lot of the times, but she started. She's starting to do really well with that. She's um, she's starting to put her shoes on. She's doing her clothes, but she still needs help of her baths. We had to prepare food for her and make sure that it's perfect temperature and get her ready for that. Then we have to watch her. Okay. She starts choking or things like that.
Speaker 3:Even though my sister is a little different from other kids. I love her just as much. My favorite thing about having a special needs sister is having fun with her and getting to know her. What is your favorite thing about your brother or sister?
Speaker 2:One of my favorite memories that I have a picture of that reminds me of that day. We were on my parent's bed and we were in our pajamas. We were just having a lot of fun. I used to, I used to give her the nickname Gugu I dunno why he gave her the nickname Gugu but that's the nickname I gave her. So I used to call her that until she was like five or six. I'd say sometimes I would play toys with her, you know, late, but not like anything like Legos. Cause she the fine motor skills. She couldn't really do that. But I tried to do as much as I could with her. Yeah. She had a lot of toys and she had a lot of fun. Maybe when she was like seven she's choose coloring. She, she like today she colors. And when I was younger too, I colored with her some at some points,
Speaker 3:My little sister is very special to me. Beth needs extra help and I helped take care of her. I'm her big brother. I protect her. I hope Beth's
Speaker 2:Umbrella over her in the rain. One of the main reasons I wrote this book was for people to understand that you're not alone. It's going to be okay. It's difficult, but your love just as much,
Speaker 1:Make sure to get your copy of Beth. Sombrella loving my sister with special needs on Amazon. Subscribe to the landscape on Apple podcast or your favorite podcast app and feel free to leave a review. Next episode, we returned to our regular format. As I interview professor Gerald Christian on his published qualitative research on quadriplegic sexuality. Um, Gerald gave a great interview on both the research that he did and his personal life. Um, so we will see you then.