Take Heart

Do's and Don'ts of Advocacy- Collaborative

• Amy J Brown, Carrie Holt and Sara Clime • Season 2 • Episode 54

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Advocacy happens in everyday situations with our children. Most importantly it’s helping others see your child, setting the tone for his or her diagnosis, and using your experiences to inform you. While standing in the gap for them, it’s imperative that you lean into who God created you to be and don’t walk this journey alone. 

September 28, 2021; Ep. 54

Timestamps & Key Topics:

  • 0:20-    Intro
  • 1:10-    Defining Advocacy
  • 2:25-    Most Important Parts of Advocacy or Helping Others See Your Child
  • 8:23-    Advocating in Everyday Situations
  • 11:30-  A Journey of Experiences
  • 21:34-  Advocating For Yourself
  • 24:29-  Advice for Advocating
  • 32:41-  A Prayer
  • 33:50-  Outro

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Sara Clime  0:20  
Welcome to Take Heart, where our goal is to offer encouragement, give hope and insight, so you can flourish in 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. You can help us spread the word by subscribing, leaving a review, and sharing the podcast with others. Amy Carrie, and I want to thank you for joining us today.

Hi, this is Sara, and I'm here with Amy and Carrie, and this month, we are talking about advocacy. As a special needs mom, we advocate for our children every day, if not every moment of every day. Advocacy is a term that I feel is thrown around in our special needs community a lot. What does it mean? What is advocacy? For me, I always go back to the dictionary whenever I really want to know what something means. I go back to the handy Merriam-Webster. It boils down to these three things. It's defined as "one who pleads the cause of another; one who defends or maintains a cause or proposal; or one who supports or promotes the interests of a cause or a group." It's just that simple. One who pleads the cause of another. As moms, that's our job. That's what we do. That is what we know how to do. We do this every moment of our child's life, whether or not they have special needs or not. I feel when you break it down like that, specifically advocacy being one who pleads the cause of another, we all have exactly what we need to advocate for our children right now. With that being said, Amy, what do you think is the most important part of advocacy?

Amy J. Brown  2:25  
Well, I think first of all, but it's a big word. So I'm glad you defined it because it's kind of intimidating. I have so many moms talk to me and say, "I feel like I don't know enough about the diagnosis." I always say, first of all, calm down, and it is helping others see your child. Because you are the expert on your child. You may not be the expert on their diagnosis. You may not be the expert on all their meds, maybe you are, but you're the expert on your child. So I think we need to take a little bit of the gravity out of the word and just say I'm going to help you see my child. I think then that makes them more approachable. So that's been a helpful thing for me to think of. Sometimes I feel like we think we have to know it all right then, and we don't. Even if it's a little bit of a picture we show others about our child, and they don't have to know everything. It's what fits this situation. I think that takes some pressure off. So just kind of letting people see your child.

Sara Clime  3:35  
Yeah, and I love that. I love how you said to start by just "be calm" because that is..." Whenever I first heard, whenever I joined this special needs community, I had heard right away, you're gonna need to advocate and fight for your child every step of the way. Whenever I heard advocate, I automatically thought Washington DC, marching up to Capitol Hill.  I don't know, I’m politically inept at times. All of a sudden, it was like, I don't know how to do that. I don't want to talk to senators or local congressman or anything. I didn't want to do any of that. That's not what it means. It just means to plead the cause of, to plead the cause of your child. So I love that. Carrie, what about you? What do you think is the most important thing?

Carrie M Holt  4:22  
So I think...I love what Amy said about helping others see your child. I think it's also us seeing our children as people. I was thinking back to when Amy interviewed Jenn during the summer and she was talking about how she had forgotten to focus on the heart of her child. I think sometimes we do get so caught up in standing in the gap for them with their medical needs, their equipment, therapy, the school behavior, finding aids or nurses. For me, it's been a ton in the medical community because Toby's been in the hospital so much. He could have all the equipment he needs, he could have all the education he needs, he could be the healthiest that he can be in his body, but if he doesn't know about Jesus, if I'm also not teaching him about relationship and love, then I'm not standing in the gap for him. Does that make sense? I think. Also remembering that they are a whole person with a heart and a soul and emotions. Also realizing there's a balance to fighting to get all the therapy they need. I mean, there were weeks and months of Toby's life, where we spent hours a week in therapy. We had private therapy. We had in-home therapy. Then finally, it was like, we're burned out, we've got to do something else. This is hurting him, his heart, it's affecting him as a person. It's too much. I think it's us also seeing our kids as who they are made in the image of God.

Sara Clime  6:13  
Yeah, and I always tell people that, because I talk about advocacy a lot, whenever I do some speaking on it, you set the tone for how other people see your child. If you're constantly complaining. I hope people hear me that complaining does not mean that you're wrong, because things are rough. But if that's all they hear. If all they hear is I'm exhausted, I'm tired, I'm so heartbroken, I'm this, I'm that, I'm tired of insurance. All of those things are real, and they are justified, and we hear you and see you on that. But if other people...if that's all they hear...humans can only...Perception is reality to them. If all they hear is the negative, they're gonna be like, I could not do what you do. I'm like, I have a child with a fabulous personality, you have no idea. Yeah, this is hard. But I also see other people's, you know, typical children, I'm like, I couldn't do that either. There's all kinds of things where you set the tone of how other people react to that. Like you said, if you need to stand in that gap for them, and see people as...They are normal, they are typical. They are atypically typical, just like every child. I love that. I think a big part of advocacy is, like I was saying, it's not marching up to Capitol Hill. It's not signing letters. Trust me, I've done all those. I've done that. I've sent letters to congressmen, I've, you know, done all of the "political stuff" that you need to do as a parent. However, those are so few and far between. It is the everyday situations where I think personally, advocacy truly matters. That's where you really start to move the needle and make a difference. So how do you guys advocate for your child with special needs in everyday situations? I can't wait to hear from both of you, because you both have two vastly different disabilities. But Carrie, let's start with you in the physical disabilities and all. How do you advocate for Toby?

Carrie M Holt  8:23  
Yeah, so I know, you know, our story is not going to resonate with all of our listeners. We spend a lot of time in the hospital. So one of the things, and my son is cognizant enough that he's getting to the age, because he is verbal, and he can speak with his mouth that I have learned advocacy for him in everyday situations has been me teaching him by example, how to advocate for himself. We just actually had a situation. He had surgery about five weeks ago, and it was actually really funny because he has an infusion port. We were on the floor before he went down to surgery, and they couldn't get it accessed. His IV access is awful. He was pretty upset about it. I just kept telling him it's gonna be okay, once you're asleep, they'll put your IVs in. You'll be fine. It'll be fine. Well, I'm sitting in the OR waiting room, and the anesthesiologist came out, and this is our favorite anesthesiologists. We've had a lot. Toby's had almost 60 surgeries. So it's pretty sad when you say you have a favorite anesthesiologist. He came out and you know what he said to me? He said Toby would not let me put him to sleep until I accessed his port, and he gave me all the reasons why it needed to be accessed. I just thought that's been a pattern of the last 14 years of me by example teaching him how to listen to the doctors, how to talk to them respectfully, how to ask questions, how to take notes, and then turning over some of that to him in appointments and teaching him how to ask questions. It's been me modeling this for the last 14 years, and now he's starting to take this over. Again, I know not every kid can do this on their own. I know, there are kids who are not speaking, verbally and all of that. I think also, even if your child is in that situation, you're still setting the example for your other kids. You're setting an example, just like you said, Sara, for the tone of how others are going to treat your child. I think that's been a part of our everyday advocacy.

Sara Clime  10:48  
Yeah, you said that you have an anesthesiologist. It's really sad too, because when we go to the emergency room, TJ falls a lot, and he has osteoporosis. So he falls, he breaks stuff. I think we went four years in a row at school where he didn't make it the last two weeks of school. I know they dread it every single time. Every teacher is like, "please don't let him fall in my class, please don't let him fall in my class. We walked in one time, and they're like, oh, his room's taken. That's really sad when you have your own emergency room. But yeah. Amy, you have, your children have different disabilities, they have invisible disabilities. So how do you advocate for them in everyday situations?

Amy J. Brown  11:30  
Well, first of all, I just want to say to moms who have kids with behavioral issues. One of my children has physical disabilities and attachment disorder. One of my other children has attachment disorder, and fetal alcohol. I'm not saying that every advocacy situation is easy for kids that have physical disabilities, but there's a vast difference between kids who have emotional disabilities, who look typical, and who just are acting naughty half the time. They are causing problems in the classroom or having to be pulled out of Sunday school. So I've had both experiences. It's really easy to get discouraged. Because with our son, it's obvious that he has a hard time walking, and he can't do stairs, and he's profoundly deaf. I feel like sometimes the red carpet is rolled out for him, until the behavior starts. With our daughter, she looks typical. Sometimes I think moms that have kids with invisible disabilities, you're questioning yourself a lot, well, can they control what they're doing or not? It's easy to say this child can't walk up steps, that's concrete. Right? So behavior is not so concrete. A couple things that I did wrong is I would send them to school or camp and just hope for the best, which was never a good idea. I think part of that was that shame, like, oh, they're being naughty, and their behaviors, negative and they're bullying, and so I had to learn to be proactive, and figure out what my role was. If I'm helping people see my child, I just can't cross my fingers and hope the principal doesn't call. If a kid can't walk upstairs, they can't walk upstairs anywhere, right? If a child with emotional issues may be able to sit through a whole Sunday school class and be just an angel, then you kind of got this false sense of security. So, what I would do is I would go in, and just state the facts of this is what alcohol does to the brain. This is what drugs do to a fetus's brain. This is why she's behaving this way, please let me know. So I kind of had to go in and kind of swallow my pride, because people are still going to judge that probably. I would do that in every situation. If you have concerns, let me know because we just don't know. You don't want to go in and say this is going to be a train wreck because it may not be. She may be fine, or he may be fine. Then the other thing I would do is use those situations as learning experiences. Like for example, this time, I know she can't...this is a situation she really is not going to do well. I just didn't beat myself up. It's kind of nebulous when you're advocating for a child with emotional and mental health needs. So I just kind of told myself, this is a learning experience. Now I know that this particular situation is not going to work, but this one did. I kind of use that to kind of give me clues on how to move forward. Does that make sense? It's tricky. It's very tricky,

Carrie M Holt  14:53  
Amy, it's like you're being proactive instead of reactive, but also understanding that every situation changes, but you still use those situations to learn so they can have the best success in the best situations and in the future. I love that. That's awesome.

Amy J. Brown  15:13  
Right. Sometimes you gotta be...sometimes it's hard because you're the mom that's coming in, and calling it what it is. No, she really is lying. No, she really is stealing. I don't think they're used to parents saying stuff like that. I think parents are normally saying my kid wouldn't do that. I think I earned the respect of the people, because they knew I was gonna be straight with them. But it wasn't easy. I mean, I had a lot of moments of like, what are they thinking of me? You know, because I had a lot of people say, what's going on at home? Have you tried this? Have you tried that? I don't always understand what they can control and not control with their behavior. So how could I expect anybody else to? So it's tricky, and it's hard, but I just kind of had to put my game face on and think I'm doing, like you said, I'm doing this for them. I'm not gonna worry about judgment. I'm just gonna go in and help people see them. On top of that, let me just say this. You also say, "she's really good at this, or she loves this," You don't go, here's all the things that could go wrong. So you're kind of letting them see the whole child.

Sara Clime  16:15  
Well. I have actually. You know what, we'll link this in the show notes too. I have a one-sheet on my website. What I do is a one sheet for my child, because he will spout off math facts like "Rain Man" one moment. Then all of a sudden, because his is a neuromuscular disease, and if he hits a wall, he'll be like, one plus one is 2, 11, 14, 3. It's the brains not connecting. I've had teachers before that have said, he's just lazy, he just doesn't want to do it, or he just doesn't want to do this, or he was tired. He just doesn't like math. So, what I did is we did a one sheet. We actually do this for our ministry. The very first thing we put on it as my child is awesome, because...I'm going to start with why he is so amazing. I want you to know that that is the most important thing. Now he will, he's going to try your ever love and patience. Trust me, my kid will do that. We'll get to that, but we always start with that. We have a "one sheet", and it literally is one sheet. I will go over it with them. I have the teachers that will look at me like okay, yeah, I'll read it later. Well, why don't we read it together now? If there is something that I could tell parents right now, is there's always the squeaky, you don't want to be the squeaky wheel, but the squeaky wheel is squeaky for a reason. The squeaky wheel needs the grease. So you're the grease. You do it. And if it's squeaky, it needs to be oiled, and that's what your job is. Don't worry about that, about being the squeaky wheel because eventually. I've had teachers that have had my son for three years, and finally in that fourth year, they've been like, Oh my gosh, it totally makes sense because I saw him do this. It will take time. So yeah. If listeners could just pick up on all of this is what we're giving you are examples that work for our family. These are not tried and true for everybody. So it's gonna take trial and error. I have walked out of a grocery store before and somebody is like, oh, how's TJ doing? I walked away thinking, they'll never ask me that again, because I just spent 20 minutes there. They might think, I didn't need a whole dissertation on how he's doing. I'll walk off and I'm like, well, I need to redo that. I've come up with some canned responses. I know if my heart hurts, and I just can't be graceful to somebody who's being a complete jerk and the store. I say certain things. I'll link it too. I have business cards. I know we've talked about this before. I have my stupid cards. So they're little business cards. So when people say something stupid about my child, because he's in a wheelchair, but then he'll just get up and start walking. I've had people say, "Oh, do you make him get in a wheelchair?" Yep, I forced them because that's just easiest is the easiest thing ever to do. There are times where I'm okay, and I feel God. I feel Jesus running through me, and I can handle it with grace and dignity. Then there's others that I know. There are other times I know if I open my mouth, nothing “Jesus like” is gonna come out at all. I take the stupid card, and I hand it to them. The stupid card on the very first line says you've just encountered somebody with Duchenne. Thank you for your curiosity, and I hand it to him and I walk off. That took trial and error. It took me going off on people in the grocery store. It took me losing my cool. So yeah, I would say trial and error and give yourself some grace.

Carrie M Holt  19:59  
It's a journey. I'm not the same, you know, advocate that I was for my son, when he was a couple months old in the hospital. It changes. You change. You learn new things, your child changes, so you have to adjust to them too. You stand in the gap differently depending on their age, their needs, and then just you learning your own. Sara, not to go off on a tangent, but you kind of learn sometimes, a little bit about yourself, like, what is it that somebody's gonna say that's gonna set you off? Maybe after the hospital stay, I've got to be a little bit more cautious because I'm stressed, and something simple is going to maybe set me off. So I need to have those cards in my wallet or things like that. You kind of learn it's a journey. It's a process.

Sara Clime  20:55  
It is. I can't even tell you the last time I handed a card out. I handed them out every other day for the first few years because I was like, "Oh my gosh, people are so stupid." But now I also think it doesn't bother me when somebody stares at my child, or if they say something inappropriate, and they have a child with them. I know now, I handle it better whenever I address the child. I'm like, you are so smart. Yes, he does have wheels instead of legs. You know, and I don't pay attention to the parents so much. I advocate through that child, appropriately, put that little disclaimer on there.

Amy J. Brown  21:36  
I would say one more thing as people you can also say nothing. That's okay. There are some times when you just want to go, you know what, I don't want to go into the whole story. I think we have a sense of people that are just being nosy and people that care. We may not always read that, but there are times. We just had, very recently in the last year, kind of a big issue with our son. All of a sudden I had people calling me that heard about this issue and were concerned. I don't want to judge whether they were concerned or not, but I just wasn't in the space to talk about it. So I just said straight up. I really don't want to talk about this right now. That's okay, too. There are times I'm sure with all of us that we've had those moments. It doesn't mean that we're being rude. It's just we're, we're kind of advocating for our own selves at that moment.

Sara Clime  22:24  
Amen. Yeah. I would say to the parents, that is such a good point, Amy. I've had parents before when we were talking about advocacy, they're like, but what if somebody says something inappropriate, and I don't say anything, and my child sees me not standing up for them? I've told them what I do with TJ. I had somebody say something so completely inappropriate while we were standing in a clinic line. This little boy said, "Mom, why is he in a wheelchair? She turned around and she said "well, not everybody is as blessed as we are." I thought, if steam could have come out of my ears. I was like, oh, no, she didn't. I'm gonna cut you with the card. No. I was just so.  I was so dumbfounded. Like I said, nothing Jesus was gonna come out of my mouth. I was so done. I looked at TJ, and I just winked at him. Then when we got back to the room, I looked at him, and I said, "You know what that lady said?" He was like, "yeah." I said, "She was wrong." He was like, 'Okay". He was little, he probably didn't even wasn't even paying attention, to be quite honest. I was so worried that he would think that he was not blessed by God by that offhand comment that that woman said. I told him, I said, I really think that we need to sit down, and we need to pray for that woman and for that son. So we took the time to pray for them. Advocacy doesn't always come with a verbal to the person. It comes with teaching your child. Sometimes that's all I can do. I just wait. It's been hours. You know when we were at the grocery store earlier this morning, and that person said something, I really think we need to pray for them, and we will. I'll have him pray a sentence with me. That's advocacy. There's so many different ways to advocate for your child. Yeah, it's a really good point. 

We're talking about how, different Amy or sorry, Carrie, you were talking about how the way you advocate now is so different from the way when you first started out. I think starting out as the hardest, because as time goes on, you realize there's gonna always be somebody staring. There's always going to be somebody that's gonna say something stupid. I'm sorry. There's just stupid comments out there. You get to the point where I don't think my heart is hardened from it. I just don't feel like it. Amy, like you were talking about, I don't feel that they deserve every response. So that's one thing that I would tell a new parent is, like Amy had said, advocate, when you feel it's appropriate for you not on other people's timeline. There's always going to be a time to advocate, and it does not have to be at that moment. What would be something Carrie, that you would say, for the new mom? 

Carrie M Holt  25:32  
So I would say, give yourself grace, first of all. I think, secondly, is to...Now I'm looking at this advocating, just from a little bit of a different standpoint, of getting someone in your corner. When you're dealing with the school, or, you have a new baby, or you have a younger child in a medical situation, find that social worker, that doctor, that nurse, that physical therapist. Get someone in your corner that can help you navigate all of this journey. It takes some time. And you're gonna have to put yourself out there and learn to trust someone and learn to give and take in that communication with them, ahem getting to know you and you and it is I think sometimes advocacy is a lot about trusting. It's about trusting the nurses who are taking care of your child. It's about trusting the therapist, that they're hearing you, that they're listening to you. I think it's just so important to have that person in your corner. Pray, ask God to give you that person. Sometimes it's going to change. We've had doctors, different doctors through the years that were really great, and then they moved hospitals or they left. It was just so heartbreaking to have to change, which I think Sara, I know, you're going through this right now.

Sara Clime  27:09  
Yeah, I cried this morning.

Carrie M Holt  27:15  
Then I think too, I mean, I think one of the things is also, when you are having conversations with doctors and nurses. This is going to be super practical, but take good notes. Write down what they're saying to you. Ask them to spell things. Don't be afraid to ask questions. It's called the practice of medicine for a reason. Even with the schools, they don't know everything. Each child is so uniquely and wonderfully made, and that's true of all of our children. Each diagnosis is different. Even in each diagnosis, each child is uniquely different. I think it's just so important to have that notebook and take good notes and write things down. Get those people in your corner and educate yourself about your child and find a good support group. I think that's the last thing. My son has Spina Bifida. So there's a lot out there. I know we have listeners who have kids with very rare diagnoses. I know sometimes it's hard to find a Facebook group or some type of local group that can help you. There might be someone. There are people out there that have similar situations. They might have similar feelings . You're in the hospital a lot, you can still find those people that are still going through something that's similar, and let them be in your corner.

Sara Clime  28:54  
Amy, what would you tell the new mom? 

Amy J. Brown  28:57  
I felt like Carrie took all of them. 

Carrie M Holt  28:58  
I'm sorry. 

Amy J. Brown  29:00  
But no, I agree with Carrie. We aren't meant to do this alone. I feel like when you get the diagnosis or you're struggling to figure out a diagnosis, it's so lonely. We've talked about that before. I guess I would say first of all, take a minute. I want to go busting in. I want to read everything. I want to know everything, and that's just not going to happen. So it's okay to take a minute. The second thing I would say, and I actually said this on my own podcast. Be you! If you're more like a person that's methodical and takes more time to work through things, you know, you don't come out swinging, that's okay. Everybody's got their own style of advocating. Just advocate in a way that's comfortable for you. I would also say that you lower your expectations. I naively thought once I got that first diagnosis, which was Fetal Alcohol, that the world is my oyster. Like, they're all gonna do just everything for me. A lot of people don't understand what that is. So I would say that, definitely. It's okay with what you know. You still know something, right? You know your kid. You're the expert on your child. It's a long journey, so just give yourself the time. You know. something, because you're not only advocating for school and doctors, you advocate with your mother in law who may not get it or this family at church. I think I didn't have a lot of confidence because I didn't know everything about it. I think you just go in with what you know. I always say this, and Sara, you too. Be gracious, because nobody really knows what's going on in your house, right? Nobody. Be gracious with people that like, be gracious with everybody. There are people that you're going to say, okay, I'm not going to give them the time right now. But be gracious with those in your life that are going to be in your corner, because they may be overwhelmed by medical procedures that you do regularly. They may be overwhelmed by behavior that you deal with regularly. They may not understand it. So just be gracious with those people because you have to make advocates of the people in your life to the Sunday school teacher, your mother in law, your mom, whoever that may be. So that's it. 

Sara Clime  31:14  
That's really good, because I have a cousin that asks me, and if they're listening right now, they're like, "Oh, my gosh, it's me,' because they do it all the time. So, I'm sorry. And I love you just so you know, but I won't say our name. They ask me all the time. Holidays. "So, is he getting better?" It's terminal with 0% chance of survival? There's no cure? No, he's not getting better. I just want to say that all the time. But the thing is, this particular person is one of the biggest advocates for my child. They will go to bat and they want to do this, they want to do fundraisers. They're like, can we wear a T-shirt? Can I do that? I mean, so not everybody is going to be perfect. I think that's kind of like what you were saying both of you is that just because they don't get all of it. That's okay. Whenever I advocate for my child, I want that person to walk away with a little bit better understanding, and a little bit of a positive reaction from me. If it doesn't help my child, maybe it helps the next person with a disability that they encounter. If that does, then that's a win, and then I've done my job. So yeah, that's really good. All right. Well, I think we could keep talking about this for a long time, but we will wrap it up. Carrie, will you close this out in prayer? 

Carrie M Holt  32:41  
I would love to. 
Dear Heavenly Father, first of all, we are so grateful that because of Jesus, you plead our case, that we have access to the Father. You have gone to bat on behalf of us. We recognize that. I just ask that all of our listeners will be able to, that you will just equip them with your power, so they can be the advocate for their child. That they will be able to set the tone for how others respond to their child. Thank you that you see our children, and you see us as whole, as created in your image, as wonderfully made as a masterpiece. I also ask that you will help our listeners to recognize and have someone in their corner. That you will give them the grace to not only be kind to others, but be kind to themselves and to give themselves grace. In your son's name. Amen.

Sara Clime  33:50 
I would say to that if you are either starting out or you are well seasoned like we are. If you don't feel that you have somebody in your corner, please reach out to us because you. You can reach us at takeheartspecialmoms@gmail.com. Amy, Carrie, and I look at it every day. We'd be more than happy to start a conversation with you. Just so you know that. You do have somebody in your corner, and we're here if you need us. 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 are walking on this journey with us. Be sure to subscribe to our monthly newsletter at www.takeheartspecialmoms.com, and follow us on Instagram or Facebook @takeheartspecialmoms. If you have any questions or comments, follow the links in our show notes. We love hearing from our listeners. Thanks for listening. Next week Amy will start our conversation on jealousy.