Special needs families have heard all types of fixes, remedies, and advice throughout their parenting journey. How do we react to these phrases with love and grace, and figure out the false beliefs behind these statements? Listen to today’s collaborative episode to find out.
March 29, 2022; Ep. #79
Timestamps & Key Topics:
If you enjoyed our podcast, please...
Special needs families have heard all types of fixes, remedies, and advice throughout their parenting journey. How do we react to these phrases with love and grace, and figure out the false beliefs behind these statements? Listen to today’s collaborative episode to find out.
March 29, 2022; Ep. #79
Timestamps & Key Topics:
If you enjoyed our podcast, please...
Amy J. Brown 0:00
Hello and welcome to Episode 79 of Take Heart. Before we get started today we would like to let you know how grateful we are for you, our listeners. We love hearing from you, so you can connect with us on Instagram and Facebook at Take Heart Special Moms, and let us know how we can best serve you. Don't forget to check out our website at takeheartspecialmoms.com for free resources and show notes.
Amy J. Brown 1:26
Welcome to Take Heart where our goal is to offer encouragement, give hope and insight, so you can flourish and your journey as a special needs mom. As we explore monthly themes, share inspiring stories and practical tips, our desire is to continue to serve you and new listeners. Carrie Sara, and I want to thank you for joining us today. Hello and welcome. In this episode, we're talking about the crazy things people say to us as special needs moms. Now, as I've said before, I'm a mom of six, we are a big family. We're a transracial family. We are a special needs family, so we do not sneak in anywhere. I would say that for the most part, people have been generous at the things they've said to me, but there are times and they have not. I think it's human nature to want to help, and when we see a situation that's different or difficult, we want to comment or help. I think most of us may have good intentions, but we just don't know what to say. I've been on the receiving end of some weird comments. These comments come from total strangers, and they sometimes come from well-meaning friends. We can laugh it off. All three of us have cracked up at some of the things people have said to us, and it gives us a sense of camaraderie, but also those things people say can be hurtful. It can make us doubt what we know is true. Today we're going to give you nine things that people say to special needs moms. So we're going to start with Sara, number one.
Sara Clime 2:48
Number one: “You're such an inspiration, or you must be so patient or so kind.” Amy, I think you've called it the Mother Teresa complex before. This one drives me crazy. I know the intentions are good. I know they're paying me a compliment. The lie that I tell myself then is that I have to be positive and an inspiration all the time. It also makes me feel like a complete farce. You have absolutely no idea. If you think I'm an inspiration there's no way you would like the real me because I'm "hot mess express" 90% of the time. Then I think you internalize those comments. I need to be an inspiration. I need to be patient. I need to be kind. Then that's when if we're not patient, or we're not kind then we start to shame ourselves in that. I think on the last episode, Carrie, you had said something, there was a quote that just because somebody carries it well doesn't mean that it's not heavy. That's what I start to feel with this type of comment is that they think that it must not be heavy. They must not realize, or they forget that there are stresses that had become normal for us and it's daily. It's daily trauma. It's continuing trauma. That's one of the biggest for me.
Amy J. Brown 4:29
I think it also makes us not be vulnerable. Once you've just told me I'm so wonderful, I'm not going to tell you no, I'm not. I'm cried all day today. I think it just isolates us more. It's meant as a compliment, but...
Sara Clime 4:44
If somebody tells you an inspiration. You're not going to tell them that you absolutely lost it with your whole family because of carrots.
Amy J. Brown 4:50
Or you haven't showered. Inspiration shower is my thing.
Sara Clime 4:55
Really, it's Sunday. I don't think I've showered since the last time you told me I was an inspiration
Carrie M Holt 5:00
Well, and I would also just like to speak to those families that have caregivers in their home, whether it's a nurse or an aide or something. I've been parenting in front of nurses for 15 years. It is a whole different ballgame of I can't lose it in front of them because they're going to report me to child services or something. There have been times where I have had to look at our nurse and say, "Sorry, you had to see that, but like, this is real life." We're not gonna put on this big show. It almost makes you feel like you can't be at home in your own home kind of thing. I've just had to work through getting over that because there are a lot of families out there who have special needs kids who have nurses in and out. It's okay to be yourself. It's okay to be human.
Amy J. Brown 5:54
Right. I love that. All right, number two, this is mine: offering solutions. Have you tried? Till in the blank? Fish oil? Timeouts? Have you tried teaching her right from wrong? Prayer? I'm kind of being silly. No, it's true. People have said all these things to me specifically, with kids with behavioral issues. Have you tried... just have her memorize Bible verses not understanding the pathology of brain damage from alcohol. That frustrates me to no end because I know they're trying to be helpful, but I feel like I am sinking in. They're offering me a teaspoon to bail water. I just want to say, "Oh, thank you." I mean, I have an inner snark, definitely. That lie there is. I have tried those things, but maybe there's something I'm not trying maybe. That's kind of that feeling of obviously, you're not doing enough because your child can't get better. I think people want our kids to be better. They're uncomfortable.
Sara Clime 7:06
I think our lives make people uncomfortable. I think like think last time, Carrie, you said that they think that they're going to catch it. Right? If I ignore it long enough, I can pretend that that could never happen to me. I had somebody one time. My son has muscular dystrophy, and it's progressive. Every muscle in the body deteriorates over time, including the heart and lungs. Muscular dystrophy has been around for hundreds of years. I had somebody stop, they were selling vitamin supplements or whatever powder supplements they were selling at the time, and said, "Well, have you ever tried _____ insert the product? It's basically like muscle milk. If you would go to the local gas station and pick up some muscle milk. I know myself well enough that I had to have this face because I don't hide my facial expressions. I really try. It had to be are you kidding me right now? I wanted to say, "Oh, muscle milk, " Like I Have never heard of timeouts, absolutely. Actually, I have tried that, and I just walked off. Because doctors over hundreds of years say, "yeah we forgot that part."
Carrie M Holt 8:36
Well, I think you guys know me and know my heart. Speaking from the other side of that, because some of those things have even come out of my mouth. I tend to be a fixer. When I see people in rough situations, immediately, my empathy radar is way up there. I'm thinking about ways to help or ways to fix it, or whatever it is because I don't want to see that person walking with that burden. I think what we do is, we end up minimizing it in a way, instead of just saying... I've learned this over the process of my life. It is better to keep my mouth shut, to listen, or just to say, "This is hard." I am going to acknowledge and see you, that this is hard.
Sara Clime 9:34
So, I think you've made a really good point, though, because I'm sure I've said it. I know prior to having TJ's diagnosis, I had to have said some really stupid stuff. If anybody's listening, and I said stupid stuff, I'm really sorry. If I continue to say stupid stuff because that's a distinct possibility. I think going into things with the intentionality of understanding that other people have good intentions. That gentleman who stopped me and said, "Have you tried this product?" He was not being mean, he was not intentionally trying to minimize my problems. I just said, "Thank you, yeah. I have." Amy, like you said, "If somebody said, have you tried timeouts?" Well, thanks. I'll try that. I mean, because the last thing we want to do is lay into people who have good intentions. I think that's a really good point. People say some stupid stuff, and it's not always they're coming at it from a very good place, but that doesn't mean that it's not like a slap your forehead type of comment, either.
Amy J. Brown 10:45
I want to add to that, too, because I've been thinking a lot lately, especially in light of all the conversations people are having in the divided kind of country we have is: how do we practice the Christian value of hospitality? Hospitality is not just having people over for dinner, it is opening up space and listening. I have to think. Like, Carrie, I'm like you, I'm really empathetic. I've been a special needs mom long enough to know I'm not going to offer anything, but how do I offer hospitality to this person that's struggling? That may mean when someone comes to your house, you don't say eat this, this, this, and this. You ask, "What can I get you? What will make you feel most comfortable?" I like to think of it like that when I'm talking and listening to people. Sara, in your, in our situation, when people say muscle milk or whatever, that's their way of offering hospitality. It's not ill-intention. Now, we've all been on the receiving end of some really dumb and ill-intentioned comments, but I think that little concept has really helped me lately. I think about how I'm responding, or I'm accepting things people are saying to me. So anyway, Carrie, number three.
Carrie M Holt 11:49
Number three, is, "I couldn't do what you do." I think really a lie...
Sara Clime 11:57
We really need to be hospitable.
Amy J. Brown 12:02
That wasn't even ten seconds oh, man.
Sara Clime 12:07
Go on, Carrie.
Carrie M Holt 12:09
I think this one is just the lie that somehow we had a choice. Right. I even want to speak to this. I remember one of my very close friends from college when they felt called to adopt. I remember her, they found out something about the baby, that could have a medical implication. It ended up being nothing. I remember her calling me on the phone, and her saying, “You know, what do we do about this because we know God has called us to this.” I said, "You don't have a choice, you don't have a choice. God's called you to this, and he has picked this child for you." I think we do what we do because we don't have a choice, and whether God has called you to that through adoption, or it's a child that you've birthed from your own womb, you don't have a choice. We just have to lean into these difficult situations. Again, I'm sure this is coming from a place, something always looks a lot harder from the outside than when you're in it. I think it also just is a call for all of us as special needs parents to first of all, realize that we don't have to be supermom. Secondly, to tell people where our strength comes from. This is a chance to spread the gospel that I can't do this on my own. This is really hard, actually. There are days that it's harder than others. The only reason why it even appears that I can, which I really can't, is because of Christ, and his strength and power is supernatural.
Sara Clime 14:17
I think it's very easy when somebody says that I've heard that so many times, I couldn't do what you do. It's very easy to think, Why? Why do you think it's so hard to mother my child or to be a parent? It's very easy to go on a tangent of, well, they must not think my child's worthy of love, and they didn't think that my child's worthy of this or my family, whatever. That's not it. I have to caution myself that they don't have to get a 30-minute dissertation, as well. I think simply telling them as you said, Carrie, well, you know what, I can't do what I do either. The only reason why I can is through Jesus Christ. That's it's just a great, simple way to spread the message.
Amy J. Brown 15:09
Amen. I agree.
Sara Clime 15:13
Okay, so number four.
Amy J. Brown 15:16
I gave this to you on purpose.
Sara Clime 15:18
Oh, yeah, this is gonna be good. So, questions when people have questions: the good, the bad, the dumb. I think the lie is that every time somebody asks us a question, they deserve an answer. Some of them don't deserve an answer. I'm going to share the dumbest thing somebody has ever said to me, and it was in front of my child, it was on a flight to Hawaii for my son's Make A Wish trip. I was taking TJ to the bathroom, and we had our buttons and shirts on. When you're on a Make A Wish trip, they want you to wear the buttons and the shirts when you're traveling and all this stuff. We had that on. For the most part, people say, "yay", and you get the little head tilt or whatever. For the most part, everybody was okay until we were going to the bathroom, and this lady said, "Oh," and she grabbed my arm and stopped me and said...Now keep in mind, TJ is holding my hand. He is right next to me. She goes, "Oh, is he gonna make it?" I was so dumbfounded. "Is he gonna live?" I looked over at TJ, and he was looking at me with wide eyes. I just turned around, told her "I sure hope so because we're all on the same flight," and I walked off. That's all I could do. I'm thinking, that is the dumbest thing I've ever done. That wasn't an advocacy moment. That was nothing, but for me to make sure that TJ didn't get so scared. I handed her one of my stupid cards. If you've listened before, I actually call them advocacy cards on my website. Again, any people that know me, and I've handed you a card, that does not mean that I think you were stupid at the moment. I just need to make sure of that because they truly are advocacy cards. Basically, it's a business card. I print a lot of them really cheaply on Vistaprint. It says you've just encountered somebody with Duchenne Muscular Dystrophy, and it has TJ's face on it, it has his website, you know. I'm making some more, and I'm gonna put the podcast on it. Even if you have an email, if that's all you have, just say if you have any questions, here's the email. Will people use it? Probably not. What it does, is at least then, it gets you out of the need to defend whatever doesn't need defending at that moment. That woman as sweet as she was. It was none of her business whether or not my child was going to make it or not. It is none of her business, and she did not deserve an answer. I did not need to make it into an advocacy moment. I didn't even need to make it into sharing the gospel moment. I needed to make sure that I didn't slap her, and I took my child to the bathroom. That was really all I needed to do at that moment is to get TJ to the bathroom, so we didn't have a bigger issue on our hands.
Amy J. Brown 18:24
Can I add to that? When you have a kid who has an invisible disability, a lot of times people make comments because of behavior. This is something my therapist helped me with a lot. I want them to understand that it's not my parenting. I want them to understand that this kid can't help what they're doing. My therapist said, "Unless there's someone who's willing to sit down with you, you don't need to have this whole PowerPoint of the story. That's not their business." I've even had friends that I've thought, okay, it's not their business, because they're really not wanting to learn. They're just looking at the external. I know that moms out there that have kids with invisible disabilities are on the receiving end of a lot of these kinds of comments. That was encouraging to me like they don't really need to know. The card, Sara, is a great idea because there may be some people that think, oh, I didn't know that, and now I do.
Sara Clime 19:17
I've handed out a lot of those cards. I have had one person contact me from it, just one. That was one person that made a difference for them. My husband was on a flight after a clinical trial. He handed the card to somebody who was sitting in the seat next to him. She lives three or four hours away. When we've had a 5k for a fundraiser, she's come. When brought a team for it. It sparked a conversation, so sometimes they're not all bad. In these certain types of situations. I think for me, I give myself permission to walk off. I give myself permission not to advocate or have to go to bat for my child because there was nothing to go to bat for. I think as special needs moms, we feel like when somebody asks a question, we need to give them the truth. We need to tell this where we want to advocate, we want to make sure that our child is well known. That lady, I'm never gonna see her again. I didn't need to waste my effort on her.
Amy J. Brown 20:25
I think we think our kids are listening, they need to see a stick up for them. Non-special needs related, I've had comments around race because my girls are black. There are times I'm thinking, I don't want them to think I'm not standing up for them. Some people don't deserve for me to talk to them about this. I think that's another thing. It's not that you were simpering away, you were advocating at that moment by taking TJ away from that situation.
Carrie M Holt 20:53
I would, I would like to add too, Amy with what you said about you talking to your therapist because you feel like you want everyone to understand. That is something I've really struggled with. It's like, I want everyone around me even complete strangers, to have a complete understanding and an acceptance of me. Honestly, that has been one of the lies kind of from my story of origin that I realized that has come out from having a special needs child that I've had to dive into and work through. I don't need everyone to understand, you know, I've learned that I don't need to have everyone accept or have empathy. There was this like felt need inside of me. I think we as women, all struggle with this to an extent that we're seen and understood and known, even by complete strangers, we want everyone to have some kind of understanding. Finding our worth in Christ. Of course, the people that matter the most to us, like our spouses and family, that's the most important understanding we need to have and not everyone else there. I'm not saying they're not worth it. They're worth it to God, but they don't need to be a part of that inner circle. Yeah.
Sara Clime 22:21
I think these situations are really good opportunities as a parent to...There have been times when somebody said something really insensitive, and I handed them a card. I did not say a word, and we got out in the car. I explained to my son, "Do you understand what they said?" That was pretty insensitive. The reason why I did this, and I said, "I think we need to pray for them that they have an open mind. The next time they come across somebody with a disability." We've said a quick prayer for that person. It was just an opportunity then for us to say, not everybody deserves your words. You have the right, just because you're disabled and somebody asked a question or touches your wheelchair, you have the right to walk away. You have the right to roll away. You have the right to do whatever. I think that that would go for children with behavioral issues too. You don't have to be understood by everybody.
Amy J. Brown 23:22
Great point. All right, we're gonna go on to number five, the comparison game. I've had this a lot. Where people say, "Have you tried...? My teenager was a little bit snarky and disrespectful, and I just took their phone away." First of all, you can't compare your neurotypical child to my child. So I think the lie underneath that, for me, is maybe I am doing something wrong, you know, because a lot of times with kids with behavioral issues, it's not a straight shot of diagnosis, you know, and it's so nebulous, and it all kind of goes together. So then you think, well, maybe I am doing something wrong as a parent, and it's not true. And so I have this a lot. I have this with friends, I have it with people that don't know as well, I have a dear friend who recently said to me, you know, one of our daughters is having significant mental health issues. And she said, You know what she needs and I just put my hand up, I went, Nope, don't tell me she needs a day with mom, a pedicure of this or that? No, you don't understand this situation. So I'm just gonna like it. She's a good friend, so I could put the hand up for her. But I think that's a really common one where people are trying to I think I'm trying to think the best to people's I'm practicing hospitality. And I think people are just trying to find a way to connect. But that can definitely give you hope. Yeah. And that kind of, but that can make you feel like maybe I'm doing something wrong. So that's number five.
Carrie M Holt 24:42
Number six. God doesn't give you more than you can handle.
Sara Clime 24:49
I think every single time, we're all like, uh...
Carrie M Holt 24:53
So this is one that has bothered me for a long time, and I've seen blog posts about it. I think what it comes down to is the fact, first of all, that verse is being completely taken out of context. I think that's number one. This is something that I've been learning lately is. All the verses that we quote, even the verse about, "Everything works together for good to them, who are called according to His purpose." When you look at those scriptures in context they're richer. There's even more meaning to them in the context of what Scripture is saying. Of course, we want to cling to certain truths, but I think it's just really important not to take things out of context. I think what the lie is, but behind this is that we can handle this, or we can do this all on our own. I think it goes with that self-sufficiency we talked about in the last podcast. The way that I look at the Scripture, first of all, I really do think is talking about temptation, when you're tempted to sin, even though I know that where temptation can be translated different ways. I think again, it goes back to what we kind of talked about this earlier is if you would have asked any of us 15 years ago, 20 years ago: can you handle this? We would tell you no. Just think about anything that you have faced as a special needs parent, or what you have just faced in life: the loss of a loved one, COVID for goodness sake. If anyone would have asked us, if you can handle this, you'll get away of escape. I think what people are trying to say is that God does give us strength. We do have a choice of how we are handling it. Are we trying to do it on our own, or are we trying to fight it in our own strength, or are we just running to God with it and asking him for help? The truth is, it kind of goes back to my number three, I couldn't do what you do is...I can't do this without God. I wouldn't, I would never be able to on my own, and it's not me. It's him. Even if it is part of the way I've been wired, God still gets the credit for that too, because He created all of us.
Amy J. Brown 27:36
I think that lie, is God doesn't give you more than you can handle. So when you're not handling it, you feel like okay, my faith is not strong enough. There's something wrong with me and my faith because apparently, God thought I could handle this. Since I can't...I think that's another part of that lie. That right? The lie that that comment kind of brings up.
Carrie M Holt 27:56
Right. Along with that, one is some people will say well, God only gives special kids to special people. Well, you know that that one is just...
Sara Clime 28:09
He gives his biggest battles to his strongest warriors.
Amy J. Brown 28:15
I sort of wish we had a video, not really because none of us have showered. If you could see our eye rolls at all?
Sara Clime 28:24
We look like 12-year-old girls.
Carrie M Holt 28:29
This kind of leads into Sara's, doesn't it?
Amy J. Brown 28:32
Number seven.
Sara Clime 28:35
Before I start this, we've used this hashtag before, and so I completely stand behind it in certain instances. With that caveat: the whole “fight like a mother” phrase. I was told from the very beginning, as a special needs mom, you're going to have to fight for every single thing your child needs or wants. I thought, oh, man, I don't think I can do that. I think that puts you in a posture of confrontation in life in general. Now that's not to say that you're not going to have an educator or a therapist or a doctor who you don't have to strap on those gloves and go to bat for. I mean there's going to be those times because people are human, but to fight for every single thing that your child has. I have a neurotypical, able-bodied child, and I don't fight for everything he has. I say he's going to have to learn for himself that life stinks sometimes Welcome to adulthood, kid. He actually texted me and said, "This whole adulting gig is not what it's cracked up to be." I'm thinking, yeah, you're welcome. But in order to properly get our children ready for adulthood, we don't fight every single battle for them. Why is that any different as a special needs mom? Now I understand when you don't have a neurotypical child, they don't understand some of the nuances, and they don't get it. Yeah, you do have to do that. But I don't think that every single thing in life is a fight. Sometimes it's okay not to fight. Sometimes it's okay to lose that battle. Sometimes it's just is this a hill I'm willing to die on? I ask myself that all the time. If I'm on the phone with insurance or doctors, or you're emailing back and forth with teachers who don't follow the IEP, or whatever it is: Is this the hill unwilling to die on? Sometimes it's like, yes, yes it is, but other times, it's you know what, I can let this one go.
Carrie M Holt 30:38
Well, and I think it goes back to there's that like, old quote that says, You attract more flies with honey than vinegar, which why you would want to attract flies, I don't know. But the, in our experiences, and we've had a lot of medical experiences, and we've had a lot of good and we've had a lot of bad is. When I'm willing to kindly educate and kindly advocate, we get a whole lot more out of people than when we go in with the gloves on, being angry and nasty. We just do. I mean, kindness begets kindness. I know, kindness is a buzzword, but it is true. We have had doctors write little letters of medical necessity and different things because we go in asking, not demanding. I'm not saying there aren't times you have to do that. I totally get that. There is something to walking in with kindness and not always having that posture of confrontation. I think, Sara, is what you said, which I love, is that I think we don't we should have that posture of confrontation. Right?
Amy J. Brown 31:46
Plus, it's exhausting.
Carrie M Holt 31:48
It is.
Amy J. Brown 31:50
It's really exhausting. Yeah. All right, we're gonna we have let's see two more. So number eight is comparative suffering. I know what you're going through. This was an actual conversation I had with somebody. I've shared on the podcast before our child had to be sent to a residential treatment center, and prior to that happening, I remember I was on a run. I saw an acquaintance, and I was pretty teared up because I had to make this hard decision. She said...I'm embarrassed even say this out loud. I know what you're going through because I had a really unruly dog I had to put down. Okay, we need the video. You should see Sara's face. Okay, first of all, let me just say you really just compared my child to an out-of-control pet. No, I don't even know what the lie is here because I think that was just dumb. But I'm just gonna say,
Sara Clime 32:42
You're aware that I can't put my child down?
Amy J. Brown 32:47
Once again, I was trying to be gracious. I think people are just trying to find some way to connect. I was in such trauma that I actually burst into tears and blurted out something to this woman that wasn't really my friend. It tells you what kind of state I was in. All that to say that I get that a lot, "Oh, I know exactly what you're going through, because blah blah blah." We know we can't compare struggles. We've said that before. Please don't compare my child to a pet. As I said, that's all I got to say about that one.
Carrie M Holt 33:22
All right. Number nine, this last one is, "as long as the baby's healthy." This is being said to a pregnant mother who is expecting a baby who you know is not going to be healthy is going to require a medical intervention after they're born. I remember thinking when I was pregnant with Toby, and this was said, just around me, not necessarily to me. Okay, so what then? Does that mean this child has less worth, less value because they're not healthy? Are we ranking our children's value and worth on what they can do, or how they can perform? I think that's the lie, that our value and worth are linked to how healthy we are or how we can perform in life. I would just caution against that. I know our wish is that every mom would have a healthy baby, but the truth is we don't grow when things are easy, we grow when things are hard. Not that I would wish for my son's suffering, but I also know that I'm a completely different person because of it.
Amy J. Brown 34:45
Right? I think anytime you have the word at least and then fill in the blank, that's probably something you shouldn't be saying. For us, "It's at least you have other kids that have healthy attachment. 'Yes. I'm so grateful because I have friends that the only children they have are not attached to them, but it doesn't make this any easier. Yes, that's a wonderful part that doesn't make my attachment with my attack these other children. That doesn't really do anything for me. I'm grateful for that, yes, but also, I still have to live my life figuring out how to attach to these children with these issues. Basically don't say, "at least." Well, those were our nine. I'm sure that we could talk all day and come up with more, and we would love to hear if you have any. Reach out on social media and give us your craziest thing someone has said to you because we would love to hear it, and we will roll our eyes on your behalf. Sara, would you like to close us in prayer?
Sara Clime 35:45
Sure. Father, God, thank you for the truths that you have for us. Thank you for the truths that use you shed upon us through scripture, through friendships, and just through your daily interactions with us. May we approach what others have to say with the heart of hospitality and understanding, letting your truths shine through that. You are our compass whenever things get tough, or we just don't understand how to handle anything. Thank you for being that compass through storms of whatever life has to hand us. May we filter whatever we hear and whatever we feel through the lens of grace and mercy and love, just as your Son has. We ask all these things, in your son's name. Amen.
Amy J. Brown 36:53
Thank you for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are grateful you're walking on this journey with us. Thanks for listening, and make sure you join us next week as we start talking to special needs siblings. We're gonna have some special guests, and you won't want to miss it.