Redefining Ability: Navigating the Complexities and Joys of Special Needs Parenting | Ep4

Discover the unexpected beauty and challenge of parenting children with special needs. Our conversation in this episode peels back the layers of emotions that come with the term "disability," revealing the complex tapestry of fear, uncertainty, and profound community connections that emerge when a family is touched by special needs. We delve into the transformative power of redefining familial bonds, finding strength in shared stories of resilience, and holding space for the unspoken understanding that comes from loving a child whose world is uniquely their own.

As we navigate the societal perceptions and cultural attitudes toward disability, I shed light on the pressing need to foster inclusivity and genuine support. We examine the prevalence of disabilities and how often they remain unseen, discussing the pressing need to educate ourselves and future generations to embrace diversity with open hearts. This episode extends an invitation to listeners to join a movement that celebrates every individual's inherent worth and to be part of a community that recognizes the value of all lives, including those touched by disability, as we reshape the narrative of what it means to be differently-abled in our world today.

Transcript

Speaker 1: 0:00

This program is made possible by friends and partners of the Special Parent Podcast.

Speaker 2: 0:05

I believe that empowering parents of special needs children is like giving them the superpower of unconditional love and unbreakable determination. They are not just parents, they are true champions, shaping a bright future for their incredible children. I'm Dr Deanna Iverson and I'm glad you're here. Hello everybody, this is Dr Deanna Iverson and I am so grateful that you've joined me here today.

Speaker 2: 0:34

Today's topic is talking about the word disability. Have you, or anybody you know, heard the word disabled or the label disabled or special needs and found that it's emotional for you or maybe a member of your family? That word can invoke some fear in some people and we, as parents of children with special needs or children with disabilities, we have a unique role and a place in helping the world understand this. So, to start off, let's talk about diagnosing our children. When children have special needs, a lot of times they're diagnosed with different things and sometimes the diagnosis is an overarching disease or condition or like, for example, autism. It's this big umbrella that doesn't necessarily tell you what it means. Sometimes they're just being diagnosed with the symptoms they have irritable bowel syndrome, they have behavior problems, they have other issues going on, and that's the diagnosis you're getting, but no one can find the common thread or factor In any way, shape or form that it comes as you're navigating this process as a parent. Getting diagnoses can be really scary. It can invoke some fear. It's new territory for everybody. Something to keep in mind and remember is that all of us all of us as parents, as we walk through this, this is new For every single one of us that are going through it. It's new for us. We're all feeling a lot of the same emotions. That's why it's so important to be there for each other. And as you become and I put that in air quotes an expert on this, you can be a mentor to a parent who's just beginning the walk.

Speaker 2: 2:28

A diagnosis sometimes can redefine a family. Some families it doesn't really change much. Everyone's right on board and everyone's just pushing forward. They're with you, they're standing by you, they want to help, they want to be involved. For other families, it can change everything. For some it can be a level of shame, for some it can be a level of unknown, so that change can be slow, maybe you don't even see it coming, or can kind of be instant, and that's hard for families to try to navigate. And I encourage you, as a parent, as you're navigating this with your family, really cling to those who support you and remember that family is not necessarily the blood. Family can be those who want to join and walk our lives with us. We always hope that we have blood relatives to cling to and to walk this with, but some families are super small and so we have to redefine what family means. So, just as you walk through this and your family is being redefined, possibly by a new diagnosis, cling to those who want to walk with you and who support and love you.

Speaker 2: 3:42

You know, for me, one of the things I realized was my child is currently, and will continue to live a life that I will never understand. His disability puts him in a different demographic. It puts me in a different demographic, but him and I are not in the same demographic, and so it's as his parent. I'm trying to figure out how to support someone when I'm not inside his head and I'm not able to necessarily understand everything he's going to walk through, and that can be scary For me. It's invoked some fear, or some parents out there themselves have their own disabilities, and so they have a unique perspective. It may not be the same disability as your child, but you're challenged in dealing with something. And then you watch your child who's challenged and dealing with something and you go I can kind of understand where they're coming from because of what I'm going through and that's such a unique perspective. It can still absolutely be scary because you have that unique perspective and you have a level of understanding. But again, you're not living the same life as your child, or maybe you are living it. You have the same diagnoses and you're scared for them, that they're going to have to walk through some of the pain you've been through, through some of the pain you've been through, and so, as a parent, that disability can be scary, getting that label. So we, as parents, we have to figure out a way to cope with it ourselves. We have to figure out that, the acceptance I was just and I figured out we have to learn to accept. We're not going to fix this, there's no fix but maybe we can explain some things, maybe we can grow an understanding and help others around us grow an understanding. And we're going to learn a lot On this journey. We're going to learn more than we ever signed up to learn. We're going to learn more than any school or institution could have ever taught us and that's going to be part of our story. So a little bit of our story.

Speaker 2: 5:45

My son's disability it's part of his genetics. It's not part of dad's genetics or my genetics. It was a spontaneous mutation. So some days it hurts me as a mom, it really hits that core self that I realized I can't really fix the problems that he's going through or fix what's going on. And he's even said to me I hate my disability and he names it I hate this. And he's said that before to me, not every day. Some days he embraces it and he loves it. But there's days that he's just, he's so hurt by something that's taken place and that, as a mom, as parents know, that hits at a core level that we just sometimes we want to reach out, we want to bring them in, we want to fix it and we can't. On those days I have to remind myself that he is beautifully and wonderfully made by God. He has a purpose and my job as his parent is to help him capitalize and grow that purpose. My job is to fight for him. So what are we going to learn on this journey? How are we going to make sure that a disability the label is not negative. We see disabled, disability, special needs and it kind of comes with all these. Okay, now, here are these challenges you're going to have. So we've learned we cannot change our child necessarily. As much as we can love on them and we can train them and we can teach them and we can get therapies and doctors and teachers and providers, he's always going to have a level of disability that impacts him, whether it's behaviorally, physically, medically. However that's going.

Speaker 2: 7:30

I was really inspired by author Kelly Coleman. She writes a book called Everything. No One Tells you About Parenting a Disabled Child. I didn't actually read this book until he was 14 years into our journey with our son book until he was 14 years into our journey with our son. And even after navigating that for 14 years Kelly or Ms Coleman, thank you for your book you have still given me nuggets of knowledge and inspiration and comfort and also challenged me and inspired me to just keep pushing on. So I suggest that you look at that. But, as author Kelly Coleman says, I may not be able to change everything for my child, but I certainly can also change the world. Well, that's not less scary, right? Certainly it made me feel, yeah, yeah, I can do that. And then the next second I went huh, how do I do that? Luckily, author Kelly Coleman doesn't leave us stranded on that one.

Speaker 2: 8:24

But where do we start? First of all, we have to change this belief that the word disability is a negative word. And that's going to start within us, and that's going to start within our child, and that's going to start within our family, and and that's going to start within us, and that's going to start within our child, and that's going to start within our family, and then that's going to spread to our community. Disability is not a negative word, it's not an excuse, it's not some of these negative taglines that sometimes get attached to it. So that's where we have to start. We have to start within us, as believing that disability is not negative, disabilities are a natural part of humanity.

Speaker 2: 8:58

I did a little research for you guys. So the World Health Organization reports that about 16% of the world population has a disability, which is about one in six people, it says. The CDC then says 27% of people in the United States have a disability, which is about one third. I mean, maybe that's because we're better at diagnosing or really searching for answers. It's availability of services. And again, that's compared to the entire world population, including all demographics and all areas. So just think about the fact that when you're walking through the grocery store, one third to one in four people, one third of the population that you're around, has some sort of disability, and that's why we have to go. Well, it's obvious.

Speaker 2: 9:52

Disabilities at least a lot of them are not necessarily visual, that we can see, that we can label right off the bat. So if we start with that mindset and start seeing the whole world out there as we just walk around and interact with it, sometimes that goes well. It can't be a negative thing. Most, all of us are dealing with it, because if we don't directly have the disability, every single one of those people has family, every single one of those people has friends, has coworkers, and so disability isn't negative, it's part of the human condition, it's part of living. So how do we define disability? So I looked at the WHO, the World Health Organization and the CDC and the way that they put it is any condition of body or mind and there's the one we can't see a lot right that limits a person's ability to interact with the world. That could be visual. It could not be visual. So the World Health Organization talks about some of the challenges with this.

Speaker 2: 10:54

So there are cultural beliefs about disabilities, some cultural beliefs that are very negative. For example, we know of a family that because of their cultural beliefs, since their son was born with autism and he is nonverbal, then he must have done something wrong, or they must have done something wrong or they must have done something wrong. And yet these are two very wonderful people, very highly educated individuals, and yet to put that negative lean on them, it hurt them to have people around them and from their community look at them with that look of what did you do wrong? What did your son do wrong? Some say that it can be a result of sin, sin in the family, sin of the parent. Whatever it is, it's a curse, it's a demonic possession. You're living against God and that's why you got this.

Speaker 2: 11:51

I'll be honest, I've had thoughts myself sometimes where I just go. What in the world could I have done to make this better, to fix this, to not allow this to happen? And then I have to stop myself and I think that's natural for our brains to do that, especially as parents and I have to stop myself and go. I didn't cause this and neither did he, and it's a part of the human condition. It's part of being human. So when I learn to accept that, I can learn to stop looking for blame and start looking for solutions. For example, if a person becomes disabled from military service, typically there's more honor to that than if you're born with a disability. There's honor because there was sacrifice. Also, we want to take the negativity out of disability and special needs. We need to realize that there's sacrifice that comes with that too. Disability is a different path. That's far from typical, but it's far from tragic. And that was a thought I got from reading Kelly Coleman. She's a great author, so that was a thought I got from reading Kelly Coleman. She's a great author.

Speaker 2: 12:57

So how do we change this world? We're trying to change our child, we're going through doing that. That in and of itself is a task, but then we interact with the world. We go out and we are doing things. So how can we start to change the world so the world doesn't have this negative view of disability? So we have to start, like I said, by asking ourselves how do we feel about the word? This could be evolving In the beginning. You get a diagnosis and boom, it's going to hit and it's going to hurt and you're going to feel it. But then, like I said, we're 14 years into it and I know families that are much further into this walk than we are and for them it's just a part of everyday life and they work through it and it's evolved. The word disability doesn't have a negative connotation for them. So that's one of the things we start with the change within ourselves. We start asking ourselves are others safe to reveal their disabilities to me? What is my response going to be? How am I going to? Am I going to be supportive? How am I going to navigate that? Am I going to be supportive and loving? Am I going to make sure not to turn it around and make it all about self-serving my need and be there to serve, help them serve their need?

Speaker 2: 14:15

The other thing we have to do as parents is we have to have the real conversations, the hard ones, the uncomfortable ones. For example, sometimes you're out in public and especially other young children. Children are real, honest until they're taught not to be so. That real honest child sits there and looks at a child with a disability and sometimes is staring. And well, some cultures, staring is rude, rude or not. The child is curious. The child is attempting to understand. So instead of jumping on the don't stare at my kid, how about discussing? Oh, do you see the tube in his nose? Were you wondering what that was? Yeah, that's how he gets food. Oh, were you noticing his wheelchair? Oh, were you noticing that his fingers are not shaped correctly? He has polysyndactyly in his hands. Oh, were you noticing? Like for a diabetic, they sometimes have a sensor that's now attached to the arm. Were you noticing what that? Were you wondering what that button looks? That looks like a button right To push. Nope, we don't. Let me explain it. So, if we can have those real conversations, other parents sometimes don't know how to help their child and they don't. They don't want their child to embarrass you by staring, so it's okay to engage them and it's okay to engage their child and have those conversations.

Speaker 2: 15:43

Be honest with yourself and others, family and friends, even if it's uncomfortable, you know. Hey, I'm sorry that this happened, but we're working with it and I appreciate your support. Thanks, guys. Use the word disabled, yep, use it, jump in. You don't have to choose between special needs, disabled or any of those different terms. Whatever comes naturally to you is what's important, because that's what you're going to use, and Just get comfortable using the word saying my child has a disability, yeah, my child has special needs, and start talking about that. Of course, you don't want to violate your child's privacy and every family has different levels of privacy, so you don't have to talk about what you're not comfortable talking about. I just encourage you to make sure to get out there and have real conversations with people who genuinely are interested and want to learn and want to support, without, of course, violating any sort of confidentiality or medical situations that you don't want anyone to know about for your child.

Speaker 2: 16:52

Get involved in communities Other parents, leaders, social media, support groups. Meet up with other parents and families. I know that there are a lot of groups out there for autism because I myself am a member of probably more than I can track. There's also groups out there for others. One of our family members found the KBG group and that's the rare disorder. My son has KBG syndrome and they found it and I was interacting with that group and I learned about something called tethered cord and I was like what's that? So I just did a simple Google search and a Google search to one of the medical sites and I was like my son has like five of the seven symptoms of tethered cord. So I immediately call his doctor and I list all the symptoms he has. And she's like holy Toledo, you're right, we need to look into this and I'm going to take the credit. My involvement in the KBG group and then my research is the reason my son had surgery to release his cord. So it's okay to admit that you need help and advice from other parents, because that's how sometimes we tell the doctors what to even look for. So that's really important.

Speaker 2: 18:11

Teach your child to be comfortable with their disability. That's another really key key one. Your child has to be comfortable with their disability because they're going to have to stand in front of the world with it for the rest of their life too. And so, for example, my son told me the other day, mom, a student in my class, was teasing me because of my KBG, and so we talked about that. And there's some great bullying sites. In fact, I'm going to have another podcast all about bullying, so look for that one. There's some great bullying sites that help you and your child navigate that. And a simple thing to stand up and just say, yeah, you're right, I do have KBG. It's not fun all the time either. And then tell your kid just walk away. You don't have anything to prove to anybody else except for the fact that you got this. He doesn't understand your disability, that's why he's teasing, but you do and you're comfortable in your own skin and you can walk. You can walk away from that situation.

Speaker 2: 19:10

We want to make sure our response is not anger or frustration when other people don't understand us, because that just kind of perpetuates the situation. If they're not responding in a way that is productive and helpful to us, that's when we know that's a part of our group that has to be pruned. Sometimes pruning people is hard and you just have to say, okay, that's maybe just going to be someone I see in the neighborhood, or that's just going to be someone that I see on a holiday, or that's just going to be someone I see at random occurrences. But I have to prune that relationship that I thought was being built because they're unable to respond positively, and maybe I'm not able to respond positively to them either because we're not doing well in this communication. So teaching acceptance for your child is about teaching patience and consistency. We have to be patient with this process. We're growing and we're learning, and we have to be consistent.

Speaker 2: 20:11

Love and fear Everything stems from love. Fear is about caring into adulthood. So my husband and I realize that my son's going to need help after we're gone. Well, that's a scary thing to think about. We have three children, so of course in our minds we're talking about the siblings, which I have a podcast on siblings too, so look for that one but it's the idea that it's also not necessarily always their responsibility to take on that load, and we have to figure out if they're going to be ready for it.

Speaker 2: 20:46

So everything stems from love, including the fear. So once you can wrap your brain around that, sometimes you can say the love is what's going to get me through, because the love is the key growth in all of this. So, in conclusion, remember, nobody actually knows how to do this. There's no manual. There's great authors like Kelly Coleman, and there's others out there. I'll reference them in future podcasts, too, that I have found inspiration from. But we are placed in the middle of this and we're just going to reinvent and invent and reinvent as we go along, and this is why community is so important. The most practical advice you will ever receive, or that I have ever received, comes from other parents. We, as parents, need to be on a path to change the world together, because this is special need parenting.

Speaker 1: 21:39

This is love.

Speaker 2: 21:40

Thank you, guys for joining me today, and I hope you have a wonderful day.

Speaker 1: 21:44

This program is made possible by friends and partners of the Special Parent Podcast. For more information and to join our mailing list, visit specialparentorg.