The Loneliness of Special Needs Parenting

Hey y’all, welcome back to Holy Ground Parenting.

In this episode, we’re talking about a part of the special needs parenting journey that often goes unspoken—loneliness.

The kind of loneliness that comes from feeling misunderstood… from having to constantly explain your child… and from navigating a life that looks different than what you once expected. It’s also the quiet moments of comparison—watching other families experience things that don’t come as easily for yours. Our anchor scripture this week comes from Deuteronomy 31:8 and our supporting scripture comes from Psalms 34:18. 

In this episode, I’m sharing honestly about what that has looked like in our journey, including the mix of emotions that can come with it—guilt, sadness, frustration, and everything in between.

But we’re also holding onto truth: that even in those moments, we are not alone. God sees, He understands, and He walks with us in every part of this journey.

If you’ve ever felt alone in your parenting, this episode is for you.

As always, you are seen, you are supported, and you are not walking this road by yourself.

Transcript

SPEAKER_00 0:04

Hey everybody. Welcome back to Holy Ground Parenting. I'm your host, Marie Kennedy, and I'm so glad that you're here today. I hope everybody had a fantastic Easter weekend. We had a great weekend. The weather was great for the most part. It rained some and it got a little cooler than I expected uh yesterday morning. I kind of felt nervous about the kids' Easter outfits because, well, first of all, because anytime I put any kind of like dressy, dressed up outfit, somebody's gonna spill something or it's gonna be uncomfortable and they don't want to wear it. And actually their outfits were pretty soft and like kind of gauzy. And so I was a little nervous that they were gonna freeze at church, but actually it worked out well because we had a big service and uh it was a little warm in there to me. And so I was kind of glad that they had like gauzy, thin, thinner outfits on so that they weren't hot, and they did really well in church service. Uh I was kind of nervous because normally Jack goes to the nursery during our church service, and we took him in there with us yesterday, and he as long as he could touch me, he was fine. Uh, anytime that he was not touching me, he got a little loud. But as long as he could touch me, he was okay. But we had a great Easter weekend. We did all the things we had cousins' sleepovers and egg hunts and egg dying. We even got to see some alligators because one of Steven's cousins' husband uh showed us some alligators and uh some baby alligators that they had caught. And so um, so we even got to see that, and the kids enjoyed all of that. They had a great time, and then um we had Easter service at church, and then we went to my sister's house for lunch after Easter, and it was so much fun and had some great food and just a good, it was just a good day and a good weekend. So uh hope everybody else had a good Easter weekend. I know holidays, holidays can always be kind of 50-50 for us. Sometimes like they go great and the kids do great and it's all fantastic like it was this past weekend, or it's like everybody's having meltdowns all the time, and you know, everybody's dysregulated. Actually, I was really I have to brag on Evie. I feel like I brag on her all the time, but I'm definitely bragging on her today because she actually got kind of dysregulated yesterday at my sister's house. Uh, but because it was loud and you know, there's other kids there and stuff, and and it's you know, different food and you know, you know, like holiday food. It's not like pizza and chicken nuggets. And so uh she got dysregulated yesterday, but she has this thing like if she spills or if she even if she has like the perception that she has spilled something on her clothes, like all of her clothes are coming off. But yesterday she spilled some sprite on her clothes, and she was able to tell me without just like stripping down naked, she was able to tell me that she wanted to change clothes, and whenever I asked her why, because I didn't see any sprite on her, uh, she was able to tell me that she had spilled Sprite on herself and that she wanted to change clothes, and so I was like, okay, so we changed clothes and uh then she and then afterwards she was able to like go right back to eating and like doing what she was doing, and she was okay. And actually, afterwards I told her, I was like, okay, you know, you're you're dry, like go sit back down and eat. And she was telling me that she wanted another chair. I didn't understand why she was saying she wanted another chair, but it was because there was sprite in the chair that I didn't see, and uh so I was like, oh, well, I and so I cleaned it up and I showed her that it was dry, and she got back up and and ate some more and and went right back to doing what she was doing, which like a year ago would have been unheard of. I would have never even thought that we would be there a year later. So I was just I was very impressed um about that, about that happening. I thought that was so amazing and and super proud of her. So anyway, uh, but I hope everybody had a great Easter. And today we're gonna talk about something that I think a lot of us feel, but maybe we don't always say it out loud. And that's loneliness. Because even when you love your child deeply, and even when you have support, there can still be moments in this journey where you feel incredibly alone. I know I I also can tend to isolate myself, like if I feel like maybe nobody understands, or I'm just having some hormonal days where I just don't feel like I have a social battery that, you know, I can, or my social battery is not charged, you know, and I just I feel like I don't want to be around people. I can definitely isolate myself for sure. Um, and there's a specific kind of loneliness that I feel like can come with raising a child with special needs. Some things that I feel like it looks like are feeling like other parents don't fully understand your day-to-day life, like they don't fully get it. Uh, and I've I know I've definitely seen some friendships change or or fade, and that's okay. I mean, there's a season for everything, and and other parents get busy too, you know. I've had you know friends that have families and and have things going on too, so I totally get that, but also you're not able to participate in things the way you used to be able to. Um, I know for us, like sometimes it's just easier not to go because the thought of having to like load everybody up and have extra clothes in case somebody feels sprite on their clothes or you know, have all the extra things just in case um sometimes that is just so much effort, it's like exhausting just thinking about it and you just don't have the energy to to deal. And so you just you just skip out, you just miss out. And while sometimes that's totally that's totally what we do and totally fine, it also can be isolating as well, because you're like, oh, I don't, I just don't have the energy to be able to to deal with all of that craziness today. Also, I've even been sitting in a room full of people and still felt alone. And you know, there's been lots of moments in this journey where I felt that. There's been moments where I felt like I was carrying things that were hard to explain to other people, and there's been moments where I've not felt fully understood, even even when people mean well, and most of the time they do mean well. But like I it's like I can't, and there's times when I've made this podcast where I feel like I'm trying to get the words out that I that I want to say, but it's like I can't fully get it out exactly how I want it to come out, if that makes sense. I think for me, one of the hardest parts of loneliness in this journey has been feeling like people don't fully understand. And like I said, it's not in a bad way, most people mean well, but there's this constant feeling of having to explain, explain behaviors, explain routines, um, explain why certain things are hard. And sometimes, like I said, it's just exhausting. And if I'm being really honest, there's also been moments of jealousy. There's there's been moments where I've looked at other families with neurotypical kids and thought, man, that looks so much easier. They can go places without thinking through every detail, they can take a break. Their kids can play outside without them. They're not constantly on guard or watching their child every single second. And those thoughts can make you feel really alone because you don't always feel like you can say them out loud. You don't want to sound like you're not grateful. But I think it's important to say this that feeling that way doesn't mean that you love your child any less. It doesn't mean that you're ungrateful, it just means that you're human, and this journey can be really hard sometimes. Our scripture today comes from Deuteronomy. Let me pull my Bible a little closer so I can read it. But it comes from Deuteronomy chapter 31, verse 8, and it says, Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you, he will neither fail nor abandon you. I love that verse, and I think it's such an important reminder in seasons where we feel alone. Because even when people don't fully understand, God does. Even when we feel unseen, he sees us. That's why I think Deuteronomy 31, 8 means so much to me. Because even in those moments where we feel misunderstood or stretched thin or alone in ways that we didn't expect, God is still with us. And he never leaves us in it by ourselves. I think that can come with this kind of loneliness. I know I've been through it, grieving what I thought parenting might look like for us, grieving the ease that other families seem to have, grieving the ability to just show up somewhere without having to think through every single detail. And sometimes that grief can feel really isolating as well. I have another scripture that I marked for today, and it's in Psalms, Psalms 34, 18. And I love this scripture because it's so comforting to me. It says the Lord is close to the brokenhearted, he rescues those whose spirits are crushed. He gets it. My heavenly father, the one who created the universe, gets it. He knows that I've grieved for the life that I thought I would have, the life that I thought that my child would have. And he's right by my side. He's not judging me, but he's loving me through it. He's always with me through the good days and the hard days. You may feel alone in your experience, but you are not alone in this journey. One thing that I've heard other people say, and and I've also said myself, is that if you've met someone with autism, you've met one person with autism. Our experiences are so different because autism is a spectrum. There are no two people on the autism spectrum that are exactly the same. Just like all of us are different, everybody on the autism spectrum is different as well. So our experiences or our experience with this with autism and and with this journey can feel isolating because it doesn't feel like anybody else is this way or has these challenges or has these hard days like we do, but we're not. We're not alone. Jesus is walking this journey right beside us. And we also have a whole community of other special needs parents out there who are figuring it out in real time, just like you are. And we also have support from our families and our friends, which is amazing. That's actually one of the reasons why I started Holy Ground Parenting in the Facebook group that goes along with it, because I didn't want parents walking down this road to feel like they had to do it alone. I we are blessed in our family and our friends that help us and understand and support us. We're so blessed, but not everybody has that experience. And so I wanted to start something to be a community for other families that maybe don't have the resources or the support that we have. If you've been feeling this kind of loneliness, I just want you to know that there are other parents who understand more than you think. There's a community that gets it. And most importantly, God is with you in every moment. Have you ever felt this kind of loneliness in your parenting journey? Or what other challenges have you faced that you would like for me to talk about or for us to talk about? Loneliness may be a part of this journey at times, but it was never meant to be the whole story. Let's go to the Lord in prayer today and talk to our Creator about it. Father God, we come to you today carrying things that are sometimes hard to put into words. Lord, you see the quiet loneliness that can come with this journey, the moments where we feel misunderstood, the times where we're just tired of explaining, and the weight of always having to be alert, present, and strong for our children. God, you also see the thoughts that we don't always say out loud, the moments of comparison, the moments of jealousy, the quiet wondering of what life might look like if things were different. And Lord, sometimes those thoughts bring guilt or sadness or frustration. But thank you that nothing in our hearts is hidden from you and nothing about those feelings pushes you away. Instead, you meet us right there. You remind us that we're not alone, even when we feel alone. Remind us that you understand what others cannot, and remind us that you're walking with us in every single moment of this journey. God, would you bring the right people into our lives? People who listen, who care, and who don't need us to explain everything to feel understood. Help us release comparison. Help us find contentment in the life that you've given us. Help us see the beauty that exists, even in the hard places. And when the days feel long and heavy, give us strength, give us patience, and give us peace. We place our hearts, our children, and our journeys into your hands. In Jesus' holy and precious name we pray. Amen. Thank you so much for spending this time with me today on Holy Ground Parenting. I hope today's conversation reminded you that you're not alone. God is walking this journey right alongside you every day. If you enjoyed this episode, I'd love for you to come join our community on Facebook. Just search Holy Ground Parenting. It's a space where parents can share their stories, encourage one another, and walk in this journey together. And if this podcast has encouraged you, one of the best ways you can help others find it is by leaving a quick review on whatever app you're listening on. I'm praying that we all have a good week and see the work God is doing in our lives. Thanks for being here, and I'll see you next time. And bye bye, goodbye, goodbye.