Ep. 147 || How Can I Help?: Loving the Friend Who Has a Child With Special Needs Transcript
This transcript is made possible by our generous donors. Learn how you can join them. This transcript has been edited for clarity.
Laura [00:01:00] Well, welcome back to another episode of Risen Motherhood! I'm Laura Wifler, and I actually have three guests joining me today. This is going to be an awesome show! It's one that I've looked forward to for a very long time today. I have with me my sister-in-law, Emily, as well as Abigail Dodds and Katie Blackburn. These women are amazing women that have become friends to me in real life. It's a pleasure to be able to have them on the show today.
Laura [00:01:32] So I'm going to have them start by introducing themselves so you can hopefully learn their voices a little bit. I'll also have them let you know how many kiddos they have in total. Today is a special show, so I'll also have them speak about any of their kiddos that have special needs, how old that child is, and some of the things they're dealing with. Emily, why don't you give us a start?
Emily [00:01:58] As Laura said, I'm Emily Jensen. I feel like I don't have to totally introduce myself here. [Laughter] I have five children, ages seven, twins that are five, four, and a two-year old. And it's my four-year old son who has special needs. He has a rare genetic mutation that's extremely small and has only been known about for a few years. There isn't a lot of helpfulness in sharing the specific diagnosis. But basically, as a four-year old, he has ASIO braces on his ankles that help give him stability to walk, he uses a transport wheelchair as he does not walk independently from a walker. And then right now, he's pretty much non-verbal. So we do a lot of text communications, like grabbing pictures and some signs. But overall, he's pretty joyful, pretty healthy, but definitely has a lot of communication and physical challenges. Abigail?
Abigail [00:03:02] I'm Abigail. I'm married to Tom, and we also have five kids. Our oldest is 15, and she just got her learner's permit for driving, so that's exciting. That's a whole different show that you could do some day. But then we have a son who's 13, then a daughter who's eleven, and another daughter who's nine. And our youngest son is the one with special needs. He's five; he'll be six when this show releases. And his special needs are, in some ways, similar in terms of the diagnosis—just that we don't really have a real definitive one. And whatever it is, is not one that has been tracked before. What it looks like for his day-to-day life means a global developmental delay: slower to walk, slower to talk. But he does do both of those things a lot. Also he has a feeding tube. So some of the parts of his brain that are small make things like swallowing and sleeping difficult. Ad he has a seizure disorder. So that's another big part of his of his special needs.
Katie [00:04:22] I'm Katie Blackburn, and I also have five kids. My oldest is six and a half, and then I have a five year old. He was diagnosed with autism just after his second birthday. Then we have a three and a half year old, and we just welcomed our fourth biological child less than two weeks ago. So he's downstairs sleeping right now. We have a foster baby right now who is nine months old. That kind of rounds out our crew. But our five year old, as I mentioned, he has autism and he is the joy of our lives. But his challenges are primarily in social interactions and communication. He is not non-verbal but pretty limited. We use lots of packs to know what his needs are. But he's getting better. He's learning more words and sentences. We do a lot of the same things in our house. It's a lot of repeating, a lot of scripting, a lot of eating, and the same kind of five or 10 foods. So our home life definitely has a repetitiveness to it to help him feel comfortable and like he has a somewhat predictable life. But he's such a joy. He loves the school bus. He loves his friends at school, and he loves his siblings. We learn a lot from him.
Laura [00:06:15] Awesome. Well, thank you all for sharing and for anyone who is new here and haven't heard the Risen Motherhood podcast before, I'm Laura and I have three kids, so I'm the odd one out. I need to get on that.
Laura [00:06:33] I have a six-year old, four-year old and a two-year old. My two-year old is the one who has special needs, and she has also something that doctors have never seen before. We've been told she's kind of the only one in the world who has what she has, so we don't have a good roadmap for what will happen. She has some extra genes in her chromosomes, and this displays itself in global developmental delays. Right now, she's a scooter—a bottom scooter—definitely on her way towards walking, and we're really hopeful that she will walk. And she's also non-verbal.
Laura [00:07:14] So to dive into our show today, the first thing that I wanted to do for the benefit of our audience was to let everybody know we did a survey on our Instagram account and asked our audience kind of where they're at. These stats were really, really interesting to discover. Thirteen percent of the Risen Motherhood audience has a child with special needs. But 78% of our audience members know a fellow mom that does have a child with special needs. And I thought that was really interesting that almost everyone is either personally affected with having a child with special needs or they all know someone who has a child with special needs. We're hopeful today's show can be really beneficial for so many of you in our audience—not just for the mom who is going through the everyday with a child special needs, but also for those of you who want to support your friend and want to know how to love them and how to care for them well. The other interesting thing we found out was that 31% of moms who have a child with special needs don't feel supported by their church family. So that's something we're going to talk about a little bit more specifically today: how the church can help a family that does have a child with a disability or special needs. That was a stat that was sad, not necessarily surprising, but a hard stat to see.
Laura [00:08:39] So anyway, I think we'll just dive in here and we're going to let the conversation flow. Our hope is you guys feel like you are sitting in a conversation with four moms who are being really candid and vulnerable and honest about what it's like to raise a child special needs and how to love a fellow mom who is in that spot. So for those women out there who maybe are a little bit nervous or don't know what to say or how to move forward, I would want to give them kind of some more practical advice from four moms who've been there. So let's start with talking about how can a friend support a mother or a family that does have a child with special needs? What have you guys seen done for you?
Katie [00:09:20] Well, on the super practical level, some of the most helpful questions for us have been, "How can we include Cannon in this? What places are easiest for you to get together?" Sometimes it depends on the disabilities, but special needs families might need a place with fences or doors that lock or not a lot of steps for easier access. You know, things like that. People aren't being selfish when they suggest, "Hey, let's all go on a hike." They may just not realize that a backyard with a fence is probably more doable for a lot of families. But I think it can be scary for people to ask that because they don't want to bring attention to the special needs in the wrong way or they don't want to hurt your feelings at all. But keep asking those, "What?" "How can we include...?" "What would be easiest for you guys today in this weather?" "Can you even come out if it's this place that we're going to or this certain situation?" type of questions. That's been so kind and means the world to me. When people say, "How can we include Cannon?" "I'm thinking through this play date tomorrow, how can we make it easier for Cannon?" "Do you need to come early? Do you want to come later after some people have left?" Just things like that. They show me the intention behind people's questions and it means a ton.
Emily [00:10:53] I love when at a play date when the moms of the peer age kids to my son encourage with a, "Hey, Jones is here. Have you said hi to Jones?" You know, I think because he can kind of play parallel independent and he's not verbal, he can get left out unintentionally. He's not going to respond, but I think it's good for them to learn to acknowledge him, to go look him in his eye and just say, "Hello. How are you doing today, Jones? And do you want to play ball with me?" And really thinking what activity would Jones like to play? I also had a friend over and she really encouraged me by telling me how she saw my son making progress. Because I see my son every day, I often feel like he's not really making much progress or it's like watching a plant grow. It's really hard for me to tell. But she named some really specific things she hadn't seen him doing this before. And it was a tangible encouragement to me. I'm glad she felt comfortable just jumping in and sharing the growth that she'd seen.
Katie [00:12:09] That's like gold to hear those things.
Laura [00:12:13] I think celebrating with that mom over the milestones met or any new improvement or progress is so huge. You guys started to touch on how friends can ask a mom how their child is doing or how they can accommodate your child. So we polled the R|M audience before the show, and all of these questions have come from the audience. But there were so many questions from mommas about how to ask how that mom is doing or how that child's doing without seeming insensitive or nosy. Can you guys give a quick phrase or some way that you would suggest they ask?
Emily [00:12:55] Yeah, I have a negative example, maybe because I like, "Don't walk on eggshells around me!" kind of person. If you're my friend, I assume you're coming from a sensitive, loving place. I would encourage people to not frame things in a pessimistic way, like, "So do they think he'll ever walk?" You're kind of assuming that he's not and framing it in the negative.
Emily [00:13:22] Another thing that doesn't always come off super well to me is when somebody immediately changes the subject to someone else they know who is like my son. I think they're like trying to connect, but I feel like they've only known him for five minutes while they say, "Oh, yeah, he seems a lot like my neighbor sister's child who has blah, blah, blah," and they go into a big, long story and it really changes the focus. So those would just be a couple of examples.
Laura [00:13:50] How would you frame it in the positive? Those were good negatives.
Emily [00:13:54] "How is he doing? How's his progress going? How are you doing?" Things like that.
Abigail [00:14:02] Maybe. I know sometimes the details about how Titus is doing can be various things. Maybe they haven't changed or it's kind of this ongoing thing. And so it can be hard to keep rehashing that over and over. It's not hard. It's just there might be other things that we could talk about. So I think, for me, what's been helpful in terms of how friends come along and support or things like that is to not forget that this person has a child with special needs and that that's a daily reality. But also, like we were saying, not to view that as the defining element of their life either. And so both of those are true in some ways. This might not be a good analogy, but I'm going to use it anyway. Just bear with me, please. But if you know someone who has a broken leg that will never, ever heal, you are going to have conversations with them that are not about the broken leg. But every now and then, you're going to check in about the broken leg and say, "Hey, is it bothering you more recently?" But it's not going to be the only thing or even the main thing that you're relating to them about. And so I think that can be helpful to remember they have an ongoing thing in their life that's different than yours that in some ways is a trial and is also very much a gift. So, yes, ask about it, but just remember that they're no different than you. They're the same person. I mean, same human people with the same kinds of struggles. And there's all kinds of things that we can talk about as well.
Laura [00:15:43] That's really good, Abigail. Moving to some things that a mom can do to help train their child if they are unfamiliar with special needs or disability and they've not interacted with it much. Can you guys talk a little bit about that? First off, how can a mom with a regularly developing child respond when their child makes one of those loud public comments about another child's obvious disability? I think we've all been there when that's happened. But if you're the mom in that situation of the child who said that thing, what do you recommend that she might say?
Emily [00:16:19] We were leaving Wal-Mart and I had my three older sons with me who are typically developing. We walked by a child in a wheelchair, and my sons—who have been around a child in a wheelchair a ton—looked at that child and were like, "Wow, there's someone in a wheelchair!" They had an innocent reaction. And they said it out of curiosity. So I guess I would just encourage mom to be calm and be kind and just model the correct response. So smile at the child and the family. And, you know, I can't think of anything to say right this minute.
Laura [00:17:03] So, moms, it's OK if you're confused. [laughter]
Emily [00:17:08] I'll just be calm and friendly. I don’t stop my kids and make them apologize on the spot. I think that makes the situation so much more awkward. There was actually another family crossing us at the same time, and their child said something and that mom turned to her child immediately was like, "Don't ever say something like that in public." And it was this very uncomfortable moment that pronounced the fact that that child was different and had a disability. And so I guess I would wait to talk about it later, assuming that nothing very, very unkind was said. It was more just a curious question.
Laura [00:17:47] My oldest son wears glasses and a patch. So it's a pretty obvious thing. A lot of kids think it's awesome and a lot of kids have questions about it. And often when they would say, "What's that thing over his eye?" or whatever, or when my kids would ask about other children with stuff, I would say, "Oh, isn't it cool? It has it has a dinosaur on it." Or "Oh, is that a cool blue wheelchair?" What I typically would do is try to make it positive like, "Oh, that's so awesome. Her AFOs have pink streaks on them," or a lot of times it's color or maybe some sort of pattern. But I think as a mom, you can kind of change the narrative a little bit and make it positive. Or when kids ask what's that on his eye or what's he wearing or why is he a pirate or whatever, I would say, "It's an eye patch. Don't you just love that green dinosaur that's on it?" I think that it helps reframe it for the kids and make it no big deal.
Emily [00:18:43] Whenever we see children having behaviors out in public—like I know that something that happened to me as a sibling with my brother growing up. I'll just say to my kids like, “Oh, like he's feeling really sad right now or overwhelmed. You feel that way sometimes, too.” I'm saying this to them kind of privately as we're walking by. Just again, remind them that they probably acted like that right before we left and we want to love that person and and maybe even pray for them. Katie, do you have any thoughts on that?
Katie [00:19:20] I mean, all of what you guys have said is so good. I'm so glad you brought up that about your own children—who are typically developing—saying something because it's like, even as special needs moms, I don't have a perfect answer for this because my other kids do it. So expect a little bit of awkwardness. It's OK. It's OK if it's a little bit awkward. But like you said Emily, stay calm, talk them through it.
When we were we were at McDonald’s here was an older child there—maybe 10 years old—real sweet girl. But she had Down Syndrome and she kept wanting my little daughter to sit on her lap to go down the slide. And my daughter didn't like it. And so she came down and she said, (pretty loud), “Mom, she's trying to get me to sit in her lap and I don't want to.” The mom was right next to us, so she heard everything. And I just said, “Well, that's OK. She's trying to be friendly, but she understands it differently than you. And you don't have to sit on her lap, honey, but you do have to be kind.”
It can be uncomfortable sometimes. My son—if you're in line for a slide and he wants that slide, he’s just going to push you out of the way and go to the front of the line. And I wish I could climb up to every slide and stop that, you know? But just explain that they may not know. They just may not understand. They were not trying to be scary or mean or rude. But it’s OK to ask me questions about it. And if you can see this specific child's parents nearby, maybe move over and introduce yourself and say, “Oh, I'm I'm sorry if that sounded rude." I think that special needs parents, if you approach them with some humility and willingness to learn from them—even if you don't know them or have just met them, they're probably OK with your child's questions. They’re probably going to be more concerned if you just ignore it and say just walk away. That's kind of hurtful. So I think just being willing to say, “It's OK, we can we can still play with them,” or “We can be kind to them.” It’s an awkward thing. Sometimes it's hard to have the perfect answer in those moments for our kids. They ask good questions, so it's hard to always be ahead of them.
Laura [00:22:02] Yeah, love when you said, “She was trying to be kind!” Or explaining what her intent was. We often talk about Eden like, “Oh, she's trying to communicate in the best way she knows how.” Which is often kind of screaming around or pulling on people's shirts or pant legs, whenever she can get a hold of. We just explain that she doesn't understand. She thinks a little bit differently than us. And, like with most things with kids, once you explain, they're like, “OK!” And they just move on. It doesn't it doesn't have to be a huge deal all the time.
So I love all this stuff that we're talking about, kind of reactive. What about in a proactive way, especially again, for kids who don't have connections with other children with special needs on a daily basis? What can a mom do to help prep her kids or educate them on this?
Emily [00:22:56] Our church had a manners classes last year that our kids attended. It was one of the things that they trained on was interacting with people who have adaptive equipment. And so things like, “Hey, we don't walk up and try to push the wheelchair,” or if they have a walker, don't play with the walker, it's not a toy. We also had a college student that was with our family and she was training a therapy dog. If you ever see someone with a seeing eye dog in public, we don't pet the dog. We don't talk to the dog. The dog is there to do work. And so I just really appreciated that. Really practical hands on-training that, “Hey, if you see someone who has these different types of equipment, it's OK to look at them, to comment about the color or whatever. But let's not touch. Let's not run fast around that child.” You know, just even some really basic safety training, I think is helpful.
Laura [00:23:59] Yeah. God's Very Good Idea is a great book for this by Trillia Newbell. In the book there's a lot of pictures of people with adaptive equipment. And I think if you see something in a book, take time to pint it out and say, “Hey, do you know what this is for? Why would someone have this?” I think that there's a lot of opportunities. It's so cool to see books and movies—mainstream and Christian—that display these types of things. If there's some literature or a movie you're watching where you can stop and explain that and help your kids understand—it’s not weird. A lot of people have this and it's a good gift from a good God that they can get that extra help that they need.
OK. Last question, ladies. I know we've covered a lot of ground today, but I want to talk specifically for a minute about the church. Can you talk about what churches can do to best support and love families who have children with special needs?
Abigail [00:24:57] Well, I'll speak because I think our church has done such an incredible job. They are very proactive about caring for kids with special needs and their families. I think one of the big things that's been a huge blessing to me, to my husband and to our family is that they do a buddy system for kids with special needs and Sunday school. And so they try and pair you up one-to-one so you have an aide, so that you can still participate. And so Titus gets to go to Sunday school with his same age. People like you. He doesn't have to go with the kids that are way younger than him. And it's just a blessing. It's a blessing that he's in there and if he's having trouble, his aide can take him out. And you know, the gal who runs our special needs ministry, she just she's committed to finding solutions that work. We had one person assigned to our son for maybe one or two Sundays, and it just wasn't working out very well. He has he was a great guy, really wonderful. But Titus has just strong opinions about people. And for whatever reason, he didn't take to this person and we couldn't change it. You know? And so she just said, “We're going to find someone who works.” And so we did! And she's just very committed to that.
And I think the other thing that our church has done that has blessed my socks off is for the adults with special needs. A lot of us have little kids with needs and sometimes when we think about their future, we don't know what it will look like. It can feel scary to think about what it will be like when they're an adult or young adult. And there is an adult Sunday school class for people with special needs and they lead worship. Every now and then they help lead worship, like a bell choir. There's the worship band, but they just do accompany and singing. And every Sunday when that's happened, of course, I'm just weeping. I'm just crying my eyes out.
But I think it has made the atmosphere in our church one where we say, “We honor the weakest among us. We trust that they can lead us in worship to our great God.” And it's just been—I‘m tearing up, I’m sorry! It's just been a gift! It has just been a gift to be able to say, “You know what, I can look ahead 20 years and I can visualize that there's hope for the future and that my son's going to be cared for and that there's a place for him.” And so I think churches that have a vision for special needs honoring those among them—I don't think you could overestimate how valuable that is—not just to the families with special needs in them, but to the whole church body. It just creates a different atmosphere.
And I'll say one other thing real quick, which is: Even if your church is doing it perfectly, it doesn't make it not hard. There is nothing in what our church does that I would say, “Oh, they could improve this”. I am perfectly content and think that they have knocked it out of the ballpark, yet Sundays are still hard. And so I think as special needs families, understanding that part of that is just our burden to bear and that God is going to meet us in there and help us. And they can't fix it for us, but they can come along side us. And so just praying that God would put a vision for that in your church and maybe seeking out a church like that, I think is valuable.
Katie [00:28:50] Yeah. We go to a very small church that doesn't have the same means or resources for a whole special needs ministry or really anything like that. Very small, a three staff member church. So it’s small. But one of the things our church has been so kind to do is just listen to what would be helpful so that we can still come. I mean, quite literally on some Sundays they would see us dragging a screaming boy out through the lobby because it was too much for him and I'm crying and I'm sweating and they’re watching this, you know? And there was this extra room that the security team was using to just keep their stuff. And we asked if it was possible to turn that into a sensory room. And that was the easiest “Yes," from our pastor, he said, “Absolutely.”
And now I know that not everybody who's listening is going to be able to get that same reception from their church. But I do want to encourage anybody who's feeling like, “There's nothing at our church. We don't have a special needs ministry. My church doesn't get it.” But to keep trying because, like Abigail said, even if our church had more resources, or even if we did have an aide that could be with Cannon right now, my husband or I, one of us still has to be with him on Sundays. Determine in your heart that it's worth it to go, you know? Because the body of Christ is so essential to our faith and to our families and to our marriages and to us being able to parent all of our children well, no matter what they're facing! We need the preaching of the word. We need worship. We need brothers and sisters in Christ. And honestly, our brothers and sisters in Christ need to see our family too. They need to see us going and fighting through what's hard. And they need to see us sacrificing. My husband and I in this season, we don't get to go to church together very often. But we're going, and we're walking in, and we're committed to this body of Christ because we know God has called us there. And the sensory room is making life so much easier for us on a Sunday to last the whole 90 minutes! But no matter what, commit to the body of Christ, don't stay home. I know so many special needs families that have given up on church because it's too hard or it's not worth it, or they were embarrassed—so embarrassed one weekend that they won't go back—but keep trying, keep trying. It's so worth it to be part of the local body of Christ.
Emily [00:31:56] I love what you guys are saying. And it's just a good reminder to me that sometimes even though it's hard, we have to be an advocate—hopefully a gentle and kind of patient advocate—but to remember people just don't know.
As a quick side story: I know my parents were really faithful to bring our family and my brother to church his whole life. Week in and week out, even when there was lots of drama going on. And it's really neat to see him as an adult. He's over 30 now. He can read, but he’s not a super strong reader. But on his own, one or two times a year, he will listen through the whole audio Bible, he highlights his Bible and listens to worship music. And today, he would get himself to church if they didn’t! He could figure out a way to get there! It’s encouraging to see that that faithfulness actually made an impact on him as an adult. Exactly what you're saying, Abigail, it provides that hopeful picture, that like just like our typically developing children, sets a pattern. We're not in charge of how God works in their heart, but these things do still matter and can imprint them in powerful ways.
Abigail [00:33:12] Yeah, especially with special needs kids who so often need routine to acclimate to something. You know, you don't want to devalue that routine even though it feels like you're upsetting the other six days of the week. It feels like it's like an interruption to the routine, and like, “How can we get through this because it's not like his days on the other days?” It's unpredictable and it's loud. But you are developing another routine which is getting to church every Sunday. And so it just has an impact also on your other children because they see that. They know if you were locked in the car the whole Sunday, which we have been more times than I wish, you know, and we drive home and I'm like, "Well, I barely got out of the car.” I mean, we did. But just enough to have such a meltdown that we had to go be locked in the car. I said to Tom, I’m like, “Why? Why did I come? I should have stayed home. He would have been so much better at home. We would have avoided this mess.” And just to have someone speak truth to you and remind you that that mess is part of the training of that routine, that is invaluable for their life.
Katie [00:34:29] Yeah, for sure. And I just want to add to the moms that are trying and that feel really, really weary, it took probably 18 months of meltdowns for us to have a breakthrough. Like he walked in on his own and high five’d the pastor on the way up the stairs. 18 months! I could have wept when he walked into the classroom and he sat down for the first time. And I was like, “I got to take a picture of that!” Like, it was a long 18 months. And it was people in the church telling me, “No, still come. He's not a bother. We're not bothered by this Katie! Keep coming!” And that was so important for me to hear. Like, “Katie, we can handle this! We can handle a little crying! You didn't ruin it.” And I’m like, “Can you handle my crying? Because I'm as bad as him.” [laughter]
But it was a long haul before there was a breakthrough. And still not every Sunday is perfect, but just stick in it because there will be fruit from your efforts. And like Abigail said, the routine will come.
Abigail [00:35:39] And for the woman who is a friend of somebody who has a child with special needs or the pastor who might be listening, what Katie just said about people in her church saying, “No, come!” Those words are so valuable. You saying that to the parents of a child with special needs and observing that they are are being upheld by Christ and that because of Christ, they are able to be faithful in being there on a Sunday, acknowledging that and speaking into it and encouraging them is huge. I mean, I can't think of anything that has meant more to me than one particular pastor at our church who has done that regularly for Tom and I. It has just made a world of difference.
Laura [00:36:31] Amen, I was going to add that as well, Abigail, so I'm really glad that you said that. And I think it just goes back to what we always try to encourage all of our listeners here at Risen Motherhood, is to be involved in the local church. Whatever your life looks like, whatever your kiddos are like, that church is where the Lord is working and he has built the body to support you, no matter what you're facing. This just goes to show that the church needs us and we need the church. It is everyone together building the body of Christ towards his glory.
I just want to end on this note. We have tons of amazing stuff that we've covered. And I know we could talk so much longer. I feel like we literally barely scratched the surface!
Emily [00:37:16] I know, it could be about a five hour show!
Laura [00:37:16]Abigail, Katie, thank you so much for joining us today on the show. It has been a gift to have your voices speak into the lives of the women at Risen Motherhood and for anyone who wants to hear more from these two women—they both write and speak on this topic as well as many others—you can definitely go check them out. Go visit our show notes on risenmotherhood.com. There's a big old podcast button that you can click on and you will find today's show notes in there and links on how to find Abigail and Katie. And then also we'll have a bunch of resources we have found helpful. I know we mentioned a few on today's show, so those will be linked in there for easy access for all of you. And we hope you guys will join us in the conversation over on social media, Facebook, Instagram, and Twitter @RisenMotherhood. You guys can find us there and join in talking about this topic as well as many others that the gospel impacts in motherhood. Thanks so much for joining today.