Beyond Disabilities: Cultivating Inclusive Communities for Special Needs Children and Families | Ep15

How do you teach your community to see children beyond their disabilities while acknowledging the role those disabilities play in their lives? This episode promises to empower parents and communities with actionable strategies to foster friendships and build a supportive environment for children with special needs. We explore the nuances of language and perspective shifts that are essential for helping everyone recognize the strengths and limitations of children with diverse needs.

Personal stories and real-life examples breathe life into our discussion, revealing the profound impact of shared experiences and connections. From breaking down complex topics into manageable pieces to finding common ground through shared interests, we provide practical advice on nurturing inclusive relationships. Hear how a father's patience with mountain biking helped a child with autism find his tribe, underscoring the significance of supportive interactions and purposeful social activities.

Our episode also delves into the critical role of modeling positive behavior and effective communication. Discover how maintaining a calm demeanor and having a game plan can empower children to navigate social situations gracefully. We explore strategies for dealing with uncomfortable interactions and the potential impact on relationships, emphasizing the importance of grace, patience, and self-compassion. Join us as we strive to build a community where every child feels valued and included, demonstrating true, undying love in special needs parenting.

Chapters

• 0:00 Empowering Parents of Special Needs Children
• 9:55 Building Relationships Through Shared Experiences
• 13:14 Fostering Empathy and Inclusion
• 24:17 Modeling Positive Behavior for Children
• 27:28 Promoting Positive Communication and Understanding

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. Have you ever wanted to help neighbors, family and friends? Welcome and embrace your family and your special needs child? This is part two of a series on how can I help other children, friends and family members be friends with my special needs child. Welcome to the Special Parent Podcast, and I am so glad that you are here to join me today.

Speaker 2: 0:54

Last time, we talked about our goal as special needs parents is to strengthen interactions with friends and family for the needs of ourselves and our children. Today, we're going to continue talking about how we can strengthen these interactions with others in our life and in our circle so that we and our children also can build friendships, strong relationships and a community that they can thrive on and that can help them throughout a lifetime. As humans, we all need that help. We all need community. We all need people to be around us and surround us. We need those who have strengths in areas that we do not, and we have strengths that we can bring to a situation, and we need a community that recognizes our strengths and gives grace and helps with our limitations. So today, as we continue that discussion, we're gonna start to talk about people are not their disability, and that includes children.

Speaker 2: 1:52

A lot of times we catch ourselves saying things such as my child with, or my child who has, or I have, and it's a label. Now there's nothing wrong with that label. That label and I have a whole podcast on that already is disarming that word disability and embracing the fact that sometimes labels can be very good for us. So labels are not bad. I'm not anti-label. This is sometimes very important. It's important to get help. It's important sometimes to help other people understand our situation or to have a different perspective. At the same time, it is only one part of who we are. For example, we can say so-and-so is a really great football player or so-and-so is on the LA Lakers. That is one part of who they are. That is not the totality of who they are. That is one skill set that they have. That is not necessarily their heart and their soul either. So when we talk about things, we might say so-and-so is a lawyer or so-and-so is an educator. These are aspects of who we are. They are important labels. They give some information. Sometimes they lead to some very wrong assumptions, and this can happen with disability labels too. They give some information. They definitely help when it comes to medical appointments and they sometimes help when it comes to friendships. They also can make or lead to it comes to friendships, they also can make or lead to, I should say, some wrong assumptions by others.

Speaker 2: 3:27

So I think it's very important that we, as parents of children with special needs, that we get out there with our community, our friends and our friends' children, and we teach them to say, yes, my child has this disability, and and then we continue the conversation. This is what it means for them, these are the limitations, these are the strengths, in addition to this disability. This is who my child is, and that's what's important is, we have to start changing the language and the verbiage, because no one else is going to change it. They don't walk it, they don't know it. We have to start doing that. So people are not their disability, but their disability is part of who they are as a human, and I think it's important for us, as special needs children, to recognize things and when we get together with other people and we start talking about possibly the limitations we need to normalize the discussion of limitations. Even in our friendships groups we can say well, you know how, you're not the best at that, so you do this or that. Maybe when you're playing games together you say you know how in Trivial Pursuit you're really good with the history facts, but so-and-so is really good with the arts facts. That's what makes us unique and different. And with my child's disability, they're not really good with this, but they are really good at this and that's how we're going to normalize the discussion of a disability is just simply a unique ability that gives us different challenges than people see in the everyday world. So, open those conversations, create that comfort level for people, create a safe space for them to talk to you. And then you have to decide how much you're going to share and we talked about that in the first episode that sometimes some people are very receptive and it helps them change and it helps them mold and it helps them understand Other people. It just creates more judgment and sometimes you don't find that out until you find that out. But if you can create an open space, most people are willing to walk through it.

Speaker 2: 5:27

Disabilities can affect different parts of different people. Physical disabilities are sometimes much more obvious, and so people will see them and they will make assumptions again sometimes wrong assumptions about what a person's ability is. But there are physical abilities, there are cognitive disabilities, there are combined cognitive and physical. There's learning disabilities, which might be a little different than cognitive. There's disabilities that might just affect us more behaviorally, and some of these disabilities might be caused by childhood trauma. As I, as a trauma therapist, understand, childhood trauma does create the brain to wire differently and this can cause a disability that the child wasn't born with. It's not caused by genetics, but it's still a challenge that this child now has, and they still, in their heart of hearts, want to be loved and accepted and part of a community and belong.

Speaker 2: 6:31

It's important to teach all children, all children, especially children who are found on that neurotypical spectrum, especially them to recognize their own limits, to recognize the need for living in community and the importance of other people in their lives. They do not have to be the one to do everything. Time with different types of people with different abilities will help them learn that, and they will learn that from watching you, wanting to spend time with people, as well as the conversations that people have with those with disabilities, those without disabilities, about how to interact. So most welcomed questions when they know someone is sorry. Most people welcome questions when they know that someone is trying to understand them.

Speaker 2: 7:12

So how can we, as special needs parents, be more open and welcome to questions? Some of you have said this. I've read this in books. I'm reading right now the Becoming Brave Together book. It's amazing. But they talk parents. Parents talk a lot about the judgment that's felt from people outside of this special needs world and we as parents sometimes are not open and welcome to any communication because we're expecting that judgment that sets us up for failure as well as someone else. We're not going to grow a community if we're that way. Now there are times we need to protect ourselves and shut down and move away from those that are critical, but there are times that we need to embrace and be open and be willing to walk through some of those hard conversations.

Speaker 2: 8:04

So how can we welcome questions? First of all, when someone asks a question, we have to learn to recognize if it hits an emotional ping in ourselves, if it's going to hit us hard in an emotional place. Let's be honest and be like wow, I'm really glad you asked me that question. I may not be ready to answer it yet. That kind of hit me. Can I have some time to respond to that? Can I get back to you on that please? It was a great question. I just need some time to kind of filter, not necessarily what to say, but how it made me feel and they might say I'm sorry, I didn't mean to offend you and you can be like I know, I know and you know what. That's why I need time, because I also don't want to answer in offense, and so I think that that's an important thing.

Speaker 2: 8:49

Take a break if it hits you in kind of a wrong way, if you really don't know the answer, if they ask a question about a disability you don't know, or even about your child's disability, because maybe they had an interaction or read something online and you're like, really I haven't heard that before or no, we don't have that experience Be willing to say let me look into that and I'd be happy to get back to you and continue the conversation later. That's also a good thing because, as much as we are experts on our own children, just like doctors will call themselves experts in their field. They don't know everybody with every case in their field and there's always an outlier, an abnormality Whoa, where did that come from? And so it's okay for us to sometimes say, okay, yeah, my child does have that disability and you read that from online, or you had another friend whose child had it and they had that experience. I haven't had that. I'm going to look into it. I'd love to talk to you about it later, but I'm not familiar, so I'll get back to you. So that's two ways. We can kind of take some time for ourselves as parents to get back to people. But the important thing is you got to get back to them because that keeps that open communication.

Speaker 2: 9:55

If they do ask a question that you're ready to answer, be careful with how many feet you jump in with. Sometimes we say, jump in with both feet and we can really overwhelm someone and then they're not even ready to process it. They don't live in this world and for us all that information was gained over maybe years of time or months of research and for us it's already just in there and you just feel like you can just spill it out. Oh, let me tell you all the things. And for them it's already just in there and you just feel like you can just spill it out. Oh, let me tell you all the things. And for them, they can't take in all the things. And so if they ask a really great question and you've got the really great answer, consider breaking that answer up into pieces. You know, I think one of the most important things to know is and stick to that one point and really go deep in that point with them until all of a sudden you notice you've lost their attention.

Speaker 2: 10:44

Then maybe next time you guys get together, or even if you think of something, send them a text message or an email. Hey, I love that you asked me that question. I wanted to give you another nugget, or I wanted to expand on that for you. This is something else to think about, or something I learned. Love to talk about it with you if you have time next time. So try not to give them the novel all at once. That's another way to remain open to questions is you don't make the other person feel overwhelmed with your responses. Plus, we're not trying to gain sympathy here, lord knows. That's not what we want. We want to have these relationships, these friendships and family members are places for us to feel safe too, so we want to make sure that we're keeping that space safe for us by not all of a sudden allowing it to be our dumping ground. That's what that one special friend is for, all right, so people are not their disability, but it is a part of them. Disabilities can affect different people in different ways, so let's be open to the questions.

Speaker 2: 11:41

Now focus on similarities. This is kind of part two. I talked about this in part one of the podcast of this episode. I wanted to re -circle back around and talk about it again. I wanted to revisit this. We're talking about differences that are good and finding similarities.

Speaker 2: 11:57

It can be as simple as you both love chicken nuggets and I say chicken nuggets because my son, I think, talks about them every day. You both love chicken nuggets. So maybe one of the interactions we're going to say is to the mom of the child, who's neurotypical, we're going to say, hey, my son really wants to be friends with you and he loves chicken nuggets. Does your kid love chicken nuggets? Oh, yeah, my kid loves chicken nuggets. Oh, this is great. Why don't we do a chicken nuggets day and we're going to buy some frozen chicken nuggets and maybe we're going to cook them up and we're going to try different dipping sauces. And it could be as simple as you're like I'm trying to get my kid to explore different textures, or different this or different that, or maybe we're going to have different types of chicken nuggets and we're going to and it's an exploratory thing where they're doing it with a friend, they're creating a relationship, a fun experience together, and maybe also then it makes them feel more comfortable to try that different chicken nugget or that different dipping sauce.

Speaker 2: 12:53

So focus on those similarities favorite foods, favorite subjects, favorite things to do, hair colors hey, you both have brown hair. Hey, you both have blue eyes. That's kind of unique because it's a recessive trait. Let's talk about what that means. So you both have something unique and different about you and that helps build that bond of we're all unique.

Speaker 2: 13:14

In some ways, commonalities make it easier for children to relate, same for adults. But sometimes we forget to help children find commonalities. But sometimes we forget to help children find commonalities. So if we can be talking to our friends and our family and say, hey, let's find ways that we can find commonalities in our kids so that way our kids can develop empathy for each other and they can encourage each other. They can see the world from multiple perspectives, and that's just helping children grow that, because they don't have that ability yet. Multiple perspectives and that's just helping children grow that, because they don't have that ability yet. Children are selfish. We know that. We're parents, they're selfish. We can help them grow. They can grow that. Let's see the world from another perspective. Someone else's likes dislikes. They might be trying dipping sauces I'm really stuck on chicken nuggets today. Maybe I'm hungry. They can try different dipping sauces and one kid's like, oh, I love the honey mustard and the other kid's like, oh, gross, I only like ketchup or something.

Speaker 2: 14:07

So for my older son it took a long time for him to find his tribe and when he was a freshman in high school we were camping with some friends and one of the guys had a mountain bike and Jaden was like, whoa, what's the how's that different from a regular bike? And it was a dad who just said well, let me show you. And my son who's? You know, my older son has autism and he it became this tinkering thing for him because mountain bikes are actually quite, quite complicated. They have all these moving parts and pieces and all this stuff. So then he wanted to ride a mountain bike and it has now grown into the fact that he is on the mountain biking team at his school and that has become his tribe. He has friends through that, he's part of a club at school and until that experience with a dad at the campground who just was tinkering with his own bike and open to saying to my son, what would you like me to show you about it? And my son was like, well, yeah, and that dad was so patient I talked about being patient. A dad of a neurotypical child was so patient with my son to teach him every little detail. And now my husband has embraced it and they mountain bike together. That's their thing and it has actually helped my son with sensory issues. The idea of sweat was like, oh no, we don't like the way our clothes cling to us. Well, now, because he loves the mountain biking and the getting into the bike and all that, he's OK with it during that time Not all the times, but it's amazing how, when someone can just be open to showing someone something, and so that's sometimes what we have to do is we have to help other adults learn how to just be open and say well, just, will you take a moment and just show them this, because it took extra patience than it normally would have with another kid.

Speaker 2: 15:59

Another thing is encourage those interactions by having conversations with parents, simply saying my son or my daughter really would like to be friends with your child, and I know that they may not be able to hang out every day or be best friends at school, but can we have that chicken nugget party? Can we go do ice cream? Can we do a swimming thing at the local pool? When we find the commonalities and we encourage the interactions, if we're very conscious and very purposeful about setting up interactions, it's going to help grow that friendship circle and it will help teach other people to feel more comfortable. Setting up interactions that are fun and appropriate for both peers or family members, by simply asking fun and appropriate for both peers or family members, by simply asking hey, how can we make this work? And in part one I talked about, for example, birthday parties or summer parties or whatever, and maybe your child is not appropriate for the big party. What do we do and I talked about that encouraging interactions by saying you know, thank you so much for the invite to your party where there's going to be, you know, 20, 30 people. This is going to be overwhelming, but my child really likes to be friends with your child. Could we the next day, the next whatever you know, could we come an hour before, an hour after, whatever works for you guys? That's why I say ask that parent, how can we make this work? And then maybe my child can come over and do this specific activity or whatever and still feel that inclusion. So when we encourage those interactions, we are teaching others, both parent and child, and we are helping ourselves and our children.

Speaker 2: 17:34

Encouraging open communication by being willing to listen to any questions that they ask, preparing yourself for questions and the answers you may have to give. That may hurt. It might be more like a you know, ptsd kind of thing, that post-traumatic. Okay, I got to talk about this again, something that you're going to talk about again, that maybe it was a surgery they went through. My son had spinal surgery and that's a situation that I talk about. But every time I do it just takes that emotional piece of energy for me. You probably just heard it when I mentioned it just now.

Speaker 2: 18:11

Sometimes there are experiences that are just not pleasant for us to go through and they hold on to us and we have to be willing to talk about them again. So we have to prepare ourselves, we have to think about it, we have to practice it. Sometimes I practice mirror talking. It does feel awkward, don't get me wrong, but it does help. So parents are usually willing to help make interactions successful. Other parents they really are, because they're looking for that social fun connection too. They don't know how and you may not know how, but if you're willing to work together and to be open and to talk about those situations, then you're going to grow together in this. These extra efforts go a long way.

Speaker 2: 18:54

I have read about a parent who helped some of the neighborhood kids that were in the kids in the classroom learn sign language. Her child was partially deaf and so sometimes they, the other children, would be going on in conversation and even though her child could read lips and was doing pretty good, it was just really hard to track, or on a playground or something like that. So the school welcomed her in and the neighborhood group welcomed her and she set forth and said I'm going to teach some of the kids basic sign language not how to have full conversation or anything like that, but basic ways they can communicate with my child when they want to get something done. And then everybody was included. Everybody learned a new skill. It was awesome and they had such a positive turnaround from that Recognizing different cues we may have to teach children and parents.

Speaker 2: 19:45

Hey, if you see my child do this, for example, some tics are heightened when a child gets stressed. If you see them do this or you hear them say that, please come get me right away, because that means that they're stressed or they're overwhelmed or they're overstimulated and it's probably going to lead to them having a behavior or whatever it might be, and I don't want to have them go through that and I don't want you to have to go through that. So sometimes teaching them to recognize different cues can be very helpful. Learning how to play with different rules. Now we teach your kids all the time. Rules are important and I do believe they are important, but not all rules fit all people in all situations. So sometimes we have to say it's okay to come up with some different rules depending on who you're playing with.

Speaker 2: 20:34

So there are certain games, for example, especially sports games that require more physical activity, that might benefit from some different rules when we're playing with children with disabilities, and I gave the great example in the first episode of this series about my older son inviting my middle son, with special needs, to come play with his friends and play baseball, and he basically set up with his friends. What that was going to look like Feeling accepted and involved might mean finding special needs community. For example, we have a little league in our area that has a special needs group and what they do is there's only two teams because there's not a lot of kids that join it. They play baseball and they invite local high school teams or other little league teams to come and play with the special needs team and then, before the game, the coaches sit down with the other team and they explain how you're going to play differently, how the rules are going to be different.

Speaker 2: 21:33

It's not about letting the other team win, it's about having fun in the game, and there are sometimes people that go that we can't always let other people win, and then I always argue back. You know there are a lot of areas in their life that they struggle that you don't know about. Maybe this is an opportunity for them to win when they don't have it otherwise. So it's okay sometimes to tell the little league team hey, you're going to play and have fun, they're going to score most of the points and you're going to show them how to be a graceful winner and a graceful loser, and we're going to walk this path together. And that is one of the goals, and that is not only to have the children with disabilities on this little league team. Not only have the children with disabilities have the opportunity to play a game, it's also an opportunity to teach multiple other teams an amazing social skill. They wouldn't have the opportunity to do otherwise and give them a chance to just play together with the kids that have unique needs, and they really do have a good time. We've never had a bad experience, in fact, usually we have teams that ask if they can come back the next season and then their parent group gets together and like spoils the Dickens out of the Little League team, the special needs team. So it's it's super, super sweet.

Speaker 2: 22:44

Um, sometimes our autism kids are very rigid about rules, very, very rigid, and so it's really hard for them to learn to play with different rules. Um, for example, my oldest son has autism and, especially when he was younger, he's very, very rule focused. Rule focused because, you know, a follows B and or, I'm sorry B follows A. I know my alphabet, I promise, and he just didn't. He didn't want to deviate from these rules that either he had set up or the game had set up, even if it was better for other people playing.

Speaker 2: 23:14

That took us a long time because we were dealing with one child that had some unique disabilities and another child that had autism and had some unique abilities and their needs did not necessarily go together. They clashed. Well, they're siblings, so we had to learn to navigate that clash. Sometimes we can just avoid that clash with friends and family members, but sometimes we can't, and family members, but sometimes we can't. So the best thing to do is stay patient. Deep breath, mamas, deep breath, we got this and consistent. Stay patient, stay consistent, stay kind, stay loving. Remind them that you are trying to teach them a life skill, that there are going to be times that 100% of the rules are always going to matter and there's no deviation, and then there's going to be times in their life where they're going to have to say, okay, I'm going to look at the human side of this and not the rule side of thispical child.

Speaker 2: 24:17

Let's talk about role modeling. Children observe how we interact, react to people and to situations. And if we interact and react with oh my gosh, I can't believe that happened and we're stunned and shocked and they think they need to be stunned and shocked, this is something we need to be dramatic about, then and if we model that calm thinking way about it, then that's what children are going to pick up. Next time they see a child with a disability have a meltdown or next time they see a child with a disability act inappropriately, they're not going to have this strong reaction. They're going to say, oh, my mom's already said, there's a game plan. I know what I need to do.

Speaker 2: 25:03

I talked about this in the first part of this. Was that creating a game plan, empowering children. What do I need to do when this happens? Let's do that. So, as we as parents say, well, here's the game plan. Oh, wow, interesting. I can understand, but I can understand without the emotional response, and I can say, yeah, I understand why you felt that way. Let me give you a big hug. Let's create a game plan and let's keep moving forward and remember, if you need to be flexible, we need to be flexible.

Speaker 2: 25:36

Sometimes that means hey, let's take a break. Maybe we've had an uncomfortable interaction and we need to not get together next week. I'm going to work through that with my child. Can you help work through this with your child? That's when we've got to be open to questions, when the mom comes to us and said, hey, we had that uncomfortable interaction and we say, oh my gosh, I'm sorry, my kid did that. Now I advocate you don't need to apologize to your kid, but sometimes it's okay to just say I am sorry, my kid did that, I'm sorry they did that, and now I'm going to try to work with them on it. Do you still want to get together next week or next month? And if they say no, I think we need a little bit of a break. Okay, I understand, let me check back in with you then and you can keep working through it. Hey, how is that going? Have you found ways to work through it? Maybe you're going to research something and say, hey, here's some things I found that might help you and your child work through this.

Speaker 2: 26:26

Unfortunately, some things can lead to a friendship ending, even a family ship ending, and we never want that. But when that happens, it's the best thing for us again to be the role model and say to our kid hey, that's just God pruning that from our lives. We don't really like it. It doesn't feel good, pruning hurts. You cut a tree's branches. It hurts, but we're going to rise above this, we're going to learn from this and we're just going to continue on with those that want to be part of our friend and family group and are comfortable with us, because, hey, they're just not comfortable and we don't need to continue to expose ourselves to that because that can be uncomfortable for us. We also don't need to expose them to something they have not figured out how to deal with yet and we can hope that they do. If you don't know the answers, it's okay to let someone know. You'll get back to them, whether that's a child or an adult.

Speaker 2: 27:28

Modeling this process and importance of learning about others is what we have to do. So let's review from the two weeks of talks here. We can change the world by working one parent, one neighbor, one family member and one friend at a time. We have to be graceful when we're teaching and guiding others and we also have to be forgiving with ourselves and them if the process doesn't go the way that we hoped. Timing of conversations are very important helped. Timing of conversations are very important.

Speaker 2: 28:02

For example, there was a time I read this on another parent's blog where someone had used the word retard in a game and it completely broke down an entire neighborhood friendship.

Speaker 2: 28:11

And it was because the special needs parent at that point immediately went on the attack how dare you use that word? And they got angry and there was a fight and the other person was like I'm sorry, it just came out. They didn't mean to offend. Yeah, they were in the wrong, but them being in the wrong is not what's important. It's swallowing our emotional response for a minute, sometimes as a parent, and helping someone learn how to appropriately respond or how something made you feel we're not going to necessarily change someone overnight and we're definitely not going to change it with fighting and anger and offense. Self-compassion for ourselves, forgiveness for others that's what is important for us to do and as we model that, we strengthen ourselves, we strengthen our children and we strengthen everyone else. Because, folks, as I've said in other podcasts, this is special needs parenting, and that means this is true, undying love. Thank you so much for joining me here today, and I hope you have a great one.

Speaker 1: 29:16

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.