Creating a Village: Support and Community for Parents of Special Needs Children | Ep12

Imagine feeling less isolated and more supported in your journey as a parent of a special needs child. That's exactly what you'll gain by listening to our latest episode of the Special Parent Podcast! Through heartfelt personal stories and practical advice, we unpack the complexities of building a balanced support system. Discover how to manage the logistical challenges of outings, set healthy boundaries, and create a social environment where your children can truly thrive. You’ll hear a touching story illustrating the transformative power of simple acts of kindness that will warm your heart and inspire you to strengthen your own community bonds.

We also provide valuable strategies for teaching your child to recognize positive interactions and set necessary boundaries. Listen as we share experiences with both helpful and misguided advice, including a distressing encounter with a doctor’s bad advice. Learn the importance of connecting with fellow parents through therapies and support groups. Lastly, we emphasize fostering an inclusive and accepting community, offering insights on how to let go of what doesn't serve this purpose to build a village filled with love and acceptance. Join us for an empowering conversation aimed at creating a stronger, more understanding community for all.

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, dr Deanna Iverson, and I'm glad you're here. Hello everyone, and welcome to the Special Parent Podcast. This is Dr Deanna Iverson. Today we're talking about building our village. Do you or your child ever feel isolated or alone? Because I know I have, and so many times where I'm going through something and I don't even know who to call. I don't know who to call who will understand. Sometimes I know I can call someone who will listen, but then they don't know what to say and that can even make me feel more isolated and alone. So I want to talk to you about building your village, creating a community of family and friends. First of all, this is not always easy. It's a struggle of trial and error. We have friends for lots of phases in our life and for lots of different activities in our lives, and we have family, and sometimes friends and family don't know how to support us or that's just not their skill set. They're not going to be there to support you and sometimes they're the champions and they want to be along every road with you. But then having them there every single time or on top of every single thing can almost feel daunting or it can almost feel like too much pressure. So this isn't easy. We've all struggled to find that balance. What is the balance between what I and my child need socially, what we need in the support systems of our lives, and when do we just kind of need a quiet break and it's okay to be a little bit of isolated and quiet time to ourselves? So we have to learn how to incorporate people into parts of our lives and create those appropriate boundaries for ourselves and help our child learn how to create their own by helping them to create their own. Our children enjoy so much being out and about. Our children enjoy so much being out and about. So if we can build them a community that can help them be out and about and in a social world and able to travel and able to go on vacations or able to go to amusement parks or the park, if we can build a community around us that can help us do that, then we create that happy, joyful parts of life. We create those for our children and that's really important for their development. So let's admit it to ourselves it's not easy to go places.

Speaker 2: 2:54

You watch any mom with any child and there's always stuff Someone's toting around with them. So then you take a mom with a special needs child. That tote bag gets a little heavy. It sometimes can be like a bag of bricks. There's the stuff you need, then there's the sensory stuff you need, then there's the behaviors. We all know that we don't leave the house without pre-thinking out okay, if A happens, then what am I going to do. If B happens, then what am I going to do? Maybe we have adaptive equipment that we need so that we can be successful or can have a good time, and that adaptive equipment of course needs stuff to go with it, and we need someone to help us heave, ho it in and out of the cars and those kinds of things. We might need some extra clothes. That stage ends for a lot of parents.

Speaker 2: 3:43

But, maybe those of us with special needs kids, that stage doesn't really end. We might need different types of food or specific types of food, because even though we're going to be going out to a family's house for dinner, we know that our child's just either not going to be able to eat something or we know that they are going to have a reaction to some sort of food, so we have to take specialty items with us. So can we ever really relax? I want to say yes, yes, you can. Whenever you leave the house, we're all on display. Let's admit it. Every parent out there leaves the house and is somewhat on display Because as we navigate this world around us the grocery store, for example and do these kinds of things other parents, other people they see us. They may not be intending to watch or to judge, but it's there. We can expect a range of reactions from that awkwardness, the awkward staring. We can expect insensitive comments though I'll tell you they probably didn't mean it that way and hopefully we can plan for some encouragement, I would say, as special needs parents, as we navigate this world around us, if we see any other parent special needs or not, any other parent out there, and we notice that they're struggling, we can give them a wink, a smile. We can walk by and say you got this. We can walk by and be like, oh so there with your mama, keep it up, keep it up. We can be there for other people. We can offer that encouragement and as we start to do that, other people that surround us are going to hear it and they're going to want to offer it to others too. A community can help.

Speaker 2: 5:27

So once my son was having a meltdown in a store. Shocker right, my child with autism and a behavioral disorder having a meltdown in a store, oh yeah. And it was one of those situations where, when that was taking place, the employee started walking by and he literally stopped, smiled and said, hey, you guys are so amazing, you got this, you're welcome here anytime. And then he kept going, which at first just threw me off my guard completely. I was like, oh my gosh. But then I wanted to, like I literally want, before I left the store, I just wanted to hug the guy. I didn't, don't worry, I didn't tackle and hug. I didn't tackle and hug, but I did mention it on my way out the store to the manager when I was checking out, I said, hey, I want you to know so-and-so. This is kind of what he looked like. Can you please just go tell him thank you, he is an awesome employee. So I wanted to share that little nugget of how much that encouragement meant to me and that's why I've decided I'm going to try to encourage others as I navigate this world around me with my child.

Speaker 2: 6:43

So sometimes I just want to blend in. I'm sure some of you have felt that way before too, where you just would like to be able to go to the store and have no one notice that you're walking around the store or, you know, have the kid who's sitting there eating the carrot in the grocery cart and everyone's like, oh, what a cutie pie. And you're like, yeah, I can feed him anything and he just sits there and eats his carrot and is a happy lark, versus the kid who you try to feed him his favorite snack and he flings applesauce across the aisle. So I guess I'm speaking from experience, because these are real world examples that I've had and I would just love to blend in. Sometimes it would be easier just to be neurotypical, but we're not. So one of the things I learned to do was I embraced standing out. I embraced the fact that we're not going to fit the norm and we're going to have situations that could be embarrassing if I allowed myself to be embarrassed and that's what took place for me. So what that means is that I can relax. I can relax because I've accepted that it's not going to be easy, just normal as I walk around. I've accepted that I'm not going to blend in every time. So instead of preparing and bracing for it in a negative way, I more try to remind myself how important it is to laugh. We all have times in our life where we just have mistakes that take place and we have two options of how we're going to respond to that. And whenever I'm trying to surround myself with a community, I make sure that I'm part of that community for other people and therefore I welcome them into mine who can just find laughter sometimes in the struggles of life.

Speaker 2: 8:36

So there is a mom, a mom's story I wanted to share with you another special needs mom and she had a family member who judged the actions of her child and her as a mom. She had a family member who judged not only the actions of the child but then her as a mom and how she responded to it. And so what happened was she had gone to a family event and she had told this. A family member like hey, this, this is how we need to act, this is the way that we need to behave, um, with my child. This family member didn't listen to her suggestions and it's like oh, that just makes us all want to. Oh, the family member did not listen to her suggestions and it's like, oh, that just makes us all want to. Oh, the family member did not listen to her suggestions on how to handle her child, and so things didn't go right and the child had the meltdown and they decided it was best to leave. Upon them doing that, the family member called and was very judgmental on how things didn't go well and the way the mom should have done things differently to ensure that they did go well.

Speaker 2: 9:44

So I thought about that story. I thought about the times that I've been in similar like situations and I think we've all kind of been there. But I'll promise you right now we're going to get through it. The way we get through it is we surround ourselves with the people that really do support us as we trial and error this and the errors hurt, but there are wins. We're going to find people that can be really great listeners and know what to say at the end.

Speaker 2: 10:11

We can find people that can be really great listeners and sometimes know how to challenge us at the end. Sometimes we need the challenge, even when we don't like it. We can find people that just are like, hey, let's just go out for a little while. Someone who will maybe invite us over to their house or be willing to go to the park with us and be okay with the awkward moments around us and be the fun friend. We can find someone who is someone who's willing to help us. I remember when my son was checked into Phoenix Children's, I had a friend who would bring me Starbucks every day. Yeah, it was close to her work, but it wasn't like it was on the way she had to park, ride the elevator to the floor, give me the Starbucks, stay with me for 30 minutes and talk and then she's like all right, if you're still here tomorrow, I'll see you then.

Speaker 2: 11:03

And it was that idea of just. She knew that I was going through stuff and she knew she couldn't fix it, but she knew I loved my Starbucks in the morning and I wasn't going to get it while my son was in the hospital. So there she was for me. So start surrounding yourself with people like that and then you can start helping your child find similar people. As your child interacts with some people, it's really good to say this is a good friend that you have fun with. Did you notice how you had fun here? Did you notice how, when you got upset, this friend helped you in this way? So that helps your child. Start to learn and see how the interactions of other people can impact them and how they can work with others. You can also even say things like hey, did you notice how, when we were doing this activity with so-and-so, they didn't respond well? And maybe your child's like no, I didn't say that Well, I did, and so we're probably not going to hang out with that person as much. Or I'm going to have a talk with their parent and see if it's even appropriate if we hang out again. So help your child learn that it's okay to we're not going to get along with everybody and it's okay to have those boundaries, because we as adults know we've had to do that many a times in our lives. One of the things I got from one of the books that I've read is you know, we may be paddling up the same river, but not in the same boat or paddling with the same equipment.

Speaker 2: 12:27

Most people have a lot of advice because there's a lot of parents out there and they're trying to help, but not always is advice very helpful. So when people give me advice, sometimes it doesn't come across as advice, it comes across as criticism, but I'm just going to choose to put it in the light. When people give me advice, it helps to find peace that I believe that their advice is good quality advice from some sort of experience. It just may not be good for my kid, but since it is good quality advice from their some sort of experience or their research or their thoughts, or they read on some book about ADHD or autism or behavioral problems, what you can say is thank you, I really appreciate that. I'll think about it. You may know it's not going to work for your child. In fact, you may have already tried it. If you're like most special needs parents, you're trying everything out there. You may have already tried it, but sometimes it's just easier to say thank you, I appreciate that and move on from it.

Speaker 2: 13:33

When you're the parent, you decide what advice is best to follow and what is not. But those friends, those people that surround you in community and really are trying to give helpful advice, let's thank them for it and move on from there. So I had a doctor give me some advice one time. That wasn't helpful. So I'll give you an example. He was a GI doctor and my son was refusing to eat. He was on a feeding tube and not eating, and we were trying to figure out lots of things, lots of details to this story. However, we took him just for a second opinion because we weren't seeing much success. I talk in a previous podcast about therapies and therapists. We weren't having a lot of success with the feeding therapy. He wasn't making a lot of progress during this window of time and I wasn't as patient as I maybe should have been. I thought, well, let's ask someone else, let's see what's going on. And this doctor said you know, if you just stop tube feeding him, he's going to get hungry and he's going to eat. He's old enough. So we were like, well, let's try it, let's just go home and try it.

Speaker 2: 14:44

So we went home and it was two and a half days, two and a half days, of not feeding him through his tube, two and a half days of him not eating and whew probably heard that in my voice. As a mom, that was hard. I started to notice a change in the way he looked. I mean, he was a young child, so he wouldn't do anything, he wouldn't eat, he wouldn't drink, and my husband and I were like, oh my gosh, our son is hurting, we're hurting him. So we immediately started feeding again, we immediately started doing everything and didn't call, didn't go back to that doctor again. But we're like, well, we tried it. Boy, was it not successful. Boy, was it not great.

Speaker 2: 15:29

It was some bad advice, but sometimes you're going to get that bad advice from really good-hearted, well-intentioned and really intelligent people. It's just not going to be right for your kid. Now I'll tell you that there was a person in our world at that time that threatened to call Child Protective Services on us because of what we were trying to do under a doctor's advice. And that's when we learned the importance of not sharing everything you're doing with everybody in your circle, because we may be paddling on the same river, but we may not be on the same branch of that river. We may not be in the same boat, we're not as far along, we're definitely not using the same paddles. So this river of life, as you start to pick and choose who's in your circle, it's going to hurt real bad sometimes when people have to be pruned out of it. But it's an important thing to learn is that who we need to share things with and who we don't. So I'll wrap it up with some tips and tricks.

Speaker 2: 16:31

I'm sorry I've done a lot of heartfelt talking on this one. Get involved in therapies to help you meet other parents. Other parents are going to be some of your best connections, some of my closest friends that I can talk to just about anything with when it comes to medical therapies and my son are other special needs moms. We may not share every aspect of our lives together, but I know if I call them and I were to tell them about what I did with the feeding tube, I'd get big hugs and, oh my gosh, girl, I know how you feel. I've done something similar. So if you get involved in therapies, if you start reaching out to special needs groups, if you get on social media with special needs groups I don't suggest sharing your life on social media, but get on there to make connections. That's so healthy for you.

Speaker 2: 17:19

Be out and about even when it's exhausting. Do it when you have the energy. Do that self-care that I talked about in my other podcast to build up that energy. Have productive conversations with people and help them learn how to be supportive. We're not going to get through to everybody, but sometimes, like when we were in a restaurant the other night, my husband and I were just enjoying dinner and the waiter comes by and starts talking and he says, oh yeah, my son has autism. And we were like, oh, and we lit up and all of a sudden the waiter's our new best friend. So it went from we were out and about to having a productive conversation where we made a connection with someone. I've had conversations before where I've said to someone, hey, that's just not going to work for my son and I can explain to you why and I've had two responses. I've had the oh, I hear you, all right, thanks for explaining it. And I've had the other response of well, but, and it's like, okay, so we're not going to get through to everyone, but when we do, we've made an impact that will impact everybody in that person's circle.

Speaker 2: 18:21

Also, here's a key thing guys, you don't need to apologize for your kid. You don't need to do that. You can say thank you for understanding, but only apologize when they did something wrong and be willing to move forward. Apologize when they did something wrong and be willing to move forward. Know that some people may not think an apology is enough and others are going to be just happy that you're trying. So you're going to get both sides of it, but you don't need to apologize. You just need to say hey, I appreciate you understanding, we're struggling and we're working on this. So thank you for being there for us. And then, if they're not there for you, you know who to prune and you got to move on.

Speaker 2: 18:58

Join those special needs groups. Be prepared for those awkward stares, but plan positive responses. That's the tip. Plan a positive response. They're staring at a feeding tube. This is really interesting, isn't it? Do you want to know more about it? Some people just they're not sure. Have you seen it before? And then you can talk about it. So plan something positive to say when you see the awkward stare, or a positive response when you see or you hear the inappropriate comment.

Speaker 2: 19:32

Find inclusive sports or adaptive sports. Most cities larger metropolitan cities have some sort of inclusive or adaptive sporting system and some school systems will allow kids to be helpful Connecting with a coordinator or maybe a therapist or provider coordinator to help you out with that. Our goal here is to educate and help others learn how to include, accept and support all individuals with disabilities, especially our child and our family. So have grace for them and have the grace for them that you wish they had for your child. That's what I was trying to say. Thank you, guys, so much for joining me today. I hope this helps you create a village around you that's full of love and acceptance and accept when it's time to prune. Have a great day.

Speaker 1: 20:34

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