Take Heart

Sometimes Advocacy is Keeping Your Mouth Shut with Sara Clime

• Amy J Brown, Carrie Holt and Sara Clime • Season 2 • Episode 53

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Learning to be an advocate for your child means leaning into how you’re created. In today’s episode, Sara gives some wildly practical tips for when to engage and when not to engage with others’ stares, looks of judgment, or comments. She gives us the three “C’s” of advocacy along with encouragement about how Jesus is our advocate.

September 21, 2021; Ep. 53

Timestamps & Key Topics:

  • 0:22-    Intro
  • 1:07-    Not One Size Fits All
  • 3:53-    What Advocacy Is & Isn’t
  • 6:40-    Non Confrontational Advocacy
  • 11:48-  Judgmental Looks
  • 16:36-  What Advocacy Should Be
  • 17:08-  When You Should Walk Away
  • 19:39-  Practice and Patience
  • 20:51-  Outro

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Sara Clime  0:22  

Welcome to Take Heart, where our goal is to offer encouragement, 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. Thank you for joining us today. 

1:07 Hi, it's Sara this week, and this month we are talking about advocacy, specifically advocating with kindness. I often give talks about advocacy, so this was difficult for me to pare down to 15 minutes. I'm just going to touch on a few highlights. I'm going to give you some links to some things that I utilize for my son. I want to start by saying please feel free to reach out to me directly if you have any questions or need clarifications, I'd love to help you. The links to these will be in the show notes. Advocacy is not easy, and at least not for everyone. I know it especially hasn't been easy for me. So why is advocating with kindness our topic this month? Well, honestly, it's because advocating and kindness don't always go hand in hand. People say things that are insensitive. Let's just be honest, they say things that are just downright rude and yes, even ignorant at times. None of these immediately perpetuate kindness, at least for me. After a decade of learning how to advocate for my son, I'm still and will always be learning. But I have learned that I will never be perfect at it, and that's okay. I have also learned that different days bring different ways of advocating. Advocacy is done best when the person advocating leans into the talents God has given them. Each one of us was created intentionally by our Creator. That means that you and I have exactly what it takes to advocate for our children. You see another special needs mom who is bold as brass, and you think I could never be that direct. That's okay. She's not you. Find the skill you excel in: writing letters, figuring out alternatives to issues at school, writing blog posts, volunteering, the list goes on and on. Advocating is not a one size fits all scenario. Also, I want to take this opportunity to acknowledge just how difficult advocating can be. It can be physically, mentally and emotionally draining. It is often uncomfortable and it feels unnatural. Like I said, it's not a one size fits all thing. As special needs parents were used to adapting things to fit our needs. Advocacy is no different. So when we feel that advocacy needs to be political, complex, or confrontational, it really doesn't. In fact, the definition of advocate is, "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 group." We plead our child's case we defend them or their diagnosis, or we support them every day. As a special needs parent or caregiver, you have been and will continue to be your child's best advocate whether any words are ever spoken. You're doing the best job already. God has already ordained each one of us to advocate for others. Proverbs 31:8 says, "Speak up for those who cannot speak for themselves; ensure justice for those being crushed." 

3:53 So now that we know what advocacy means, let's talk about what advocacy is and isn't. Advocacy doesn't need to be complicated, nor does it need to be confrontational. Y'all I can complicate a situation like nobody's business. My brain runs a million miles an hour, all the time. Usually it's running in circles. Well I Corinthians 14:33 says, "For God is not a God of disorder but of peace." I personally love the King James version of this one, it says, "For God is not the author of confusion." It's a biblical truth that it is okay to keep it simple. So whether you are writing letters, or you're speaking at your child's IEP meeting, or you're talking to church members or family or friends, keep it simple. But how do you keep it simple, right? It's hard when everything your child does impacts every other aspect of their lives. How do you talk about your child? This is a biggie and I think it's often overlooked. I keep what I call a one sheet. It is literally one sheet of information about my child. I will fold it, and put it in my wallet. I will pull it out and discuss it with other people. I have been known just to leave it with people. Like I said, I'll provide a link to this document in the handout in our show notes. This one sheet tells all the important information about my child. It has a picture on it. I always start any advocacy documents with a picture because I want people to see my son. I want them to see his smiling face. I want them to see his beautiful eyes, because that's who he is. The diagnosis is yes, that's what we're talking about, but he is a person. I want them to see that. So I always start with a picture. I just give basic information: his age, what grade he's in, and what his favorite activities are, some of the things that he does. My son doesn't know how to initiate a conversation. He has difficulty in social situations. So when other people around them, they're like, "Oh, my gosh, so you love history. You love World War II. I do, too. Tell me about World War II. I mean, trust me, don't do that if you don't want a 10 minute conversation about World War II with my son, but it gives people an "in" that he won't know how to say to them. I always start with these are my son's strengths, this is what makes him awesome, this is what makes him amazing. Then I go into why he has difficulties with this. Like I said, I provide this to anybody caring for TJ. It's anybody on his team, and his team be that medical, educational, therapy, spiritual family members, I provide it repeatedly. Like I said, I carry it with me at all times. It's helped me also keep a concise record of how to talk about my son, because sometimes, you just kind of want to give all the information at once. 

6:40 Along with complicated, advocacy doesn't always need to be confrontational either. This one, honestly, is probably the most difficult for me. I've struggled with it for nearly a decade, since my son's diagnosis. I'd like to say I've come a long way, but I think that this honestly is something I will need to work on and try to improve my whole life. I'd like to say this is just my mama bear instincts kicking in, and don't get me wrong, there will be times when confrontation is needed. If your child's physical, emotional, or mental well being is being threatened then confrontation is absolutely necessary. What I'm talking about here more is the posture of confrontation or anticipating confrontation. It is so easy to automatically get on the defensive before anyone even speaks. I will gear myself up just to go into the grocery store because I know somebody is going to say or do something that's pretty rude or ignorant. It's easy to expect the whispers of the stares, right? What happens is that anticipating the confrontation just makes me anticipate the negative in life. That's no way to go about my life. When I used to anticipate confrontation, I found I wouldn't respond with grace. Honestly, I wasn't any more prepared for the rude comments, I was just more irritated. I have responded in non Christian ways in the past. I beat myself up for hours, if not days. So for me, I came up with two responses. So I don't need to rely on myself to find clear, concise, or kind words in the moments of anxiety or those high emotions. I practice them. I have broken them out in two types of unwelcome experiences with other people. Those are words or looks of judgment. Starting with words of judgment, Matthew 12:36 says, "I tell you on the day of judgment people will give an account for every careless word they speak." Y'all this right here should give us peace. But, it should also convict us because we know others will answer for every careless word that they will say to our child or to us. But you know what? So will we. I will account for every response I have back. Nowhere in the scripture does it say well, that's unless someone is mean to you, then you can let it rip, Sara. I always keep this scripture in mind, and it makes me stop. It makes me pause, and I then ask myself: Are the words that are going to come out of my mouth at this particular moment, are these going to require a moment of reckoning on my day of judgment? Is it worth it? Nine out of ten times, it is no way no how it's going to be worth it. So I have a response. It just simply says, and I'm just going to put my son's in here, so I just say, "Excuse me. I'm not sure I heard you correctly, but my son has Duchenne Muscular Dystrophy, and he often experiences..." I'll put something in, depending on the situation, he's often over sensitized, or he experiences volatile mood swings, or heightened emotions that you and I aren't prone to. Then I ask, "Do you have any questions?" Usually, that's where the conversation stops. I've been nice, and I've advocated for my son. My son, who is sitting right there, knows I've got his back, right? At this point is when I hand them a business card. I carry around a business card as well. This is different from the one sheet, the one sheet has a lot more information for people who are on my son's team. They're the people who get to know him and get to care for him, so they have a lot more information. Business cards, these are just ways for me to either engage or walk away from a conversation, but I can at least get them out there. Again, it has my son's picture on it. It's just a simple business card. I ordered them real cheap off the internet. I just hand it to people. If they throw it away, they throw it away, but at least I know I've done what I can for my son, and sometimes if I cannot speak, maybe this is what is needed. It just says stuff like: Hello, my name is TJ. I have Duchenne Muscular Dystrophy. Here's where you can follow me, and I list my son's Facebook page. I list some other things like this podcast. On the back side, it says, "Hi, thank you for your curiosity and interest. I have been known to say sometimes that in certain situations, they're not just business cards, they're stupid cards. I know we're not supposed to teach our words. I know stupid is not a nice word, but sometimes people need a stupid card. It's my way of like, Jesus isn't coming out of my mouth at this moment, they need a card. The judgment or inappropriate curiosity, the staring whisper, you know all of that it comes in the middle of a meltdown or at the worst opportune time you are in the middle of the produce section. It's an emergency where your attention and your time needs to be given to your child. This is where no words or actions need to be said, and it's okay to walk away. No matter the situation and whether I say something, hand someone a card, or I walk away, I always end it by saying a short prayer. It is always Lord, I am thankful that they have no idea what I am going through. 

11:48 So, let's talk about the looks of judgment. I keep this separate from words of judgment, because we often misinterpret looks. Luke 6:37 says, "Do not judge, and you will not be judged. Do not condemn, and you will not be condemned. Forgive, and you will be forgiven." Looks are passive conflict. They can easily be turned around right back on you. How many of us have been in a situation where someone gives you a look, you confront them and they say, "I didn't do that. I didn't roll my eyes. I wasn't looking at you. I didn't make a face, you must have misunderstood." In my opinion, if they aren't adult enough to speak, their looks don’t need to be acknowledged. When someone stares, or gives me a look that I perceive to be judgment, no words are needed. I smile. I make sure that I make eye contact with them, like I see you. Usually that is enough that they turn their heads, or sometimes, if they don't mean any ill will, they will smile back at me. I actually had one woman say, "Oh my gosh, good grief, I was staring. I hate it when someone does that to my boy, but I just love the color of your son's wheelchair, I really think that he would like that color. We're getting ready to order a new wheelchair." We sat there and talked about it right in the middle of the grocery store. She was down on all fours looking at my son's wheelchair. She said, "I just love the color. Oh my gosh, I really liked it." It was a moment of camaraderie that really started with me starting to give her some attitude to be quite honest, and it wasn't necessary. So if I'd have thrown a dirty look or my "what now" kind of attitude that sometimes I'll give off, I would have been in the wrong. I would have judged incorrectly. I would have missed out on an opportunity to have a lovely conversation with another special needs mom. No, this is not the case. It's very rarely the case, if ever the case, some people just don't seem to find their manners at times, and that hurts. It's also harder not to say anything if your child is right there and feels or sees that other censure as well. That's when my child gets my words, not the stranger. My child gets my words, my hugs and my energy. You may be thinking how does this have anything to do with advocacy? I believe the way you handle situations like this, everyday situations, generally giving ourselves grace for having bad days ourselves. When we handle these situations, it sets the stage for how that person may interact with the next person they come across. You aren't just advocating for your child, but you are advocating for the next individual with disabilities or special needs that that person comes across. What do you think, most of the time, yields better results: you throw a dirty look or a snide remark, or you handle them with directness and grace and you sprinkle in a little bit of education? Usually the latter yields better results. One thing that happens to my son too is a lot of times a parent will scold their child almost and say, "Don't stare, don't look, that's rude to look at them." I even had one lady, she even told her child. They said, "What's wrong with his legs, mommy? She said, "Not everyone is as blessed as we are." I wasn't gonna let that one go. I didn't want my son to even remotely think that it wasn't blessed. At that moment, I thought, who needs my words? It was their child, so I simply talked to the child,.  got down on my, I just kind of crouched down, and I said, in a very age appropriate way. I commended him first. I said, "You saw something so unique about my child that others haven't. You are so smart. You noticed something that was different. He has wheels instead of legs, right?" I just talk and I just say how perceptive and smart they are. Then I asked the child if they had any questions. I should preface this by saying, usually I will say something to the parent about how your child really did make a terrific observation. Do you mind if I say something to them? Because I really think he made a smart statement. That usually gets them. I usually comment on how smart their child is. Then they're like, yeah. Then, I kind of let them know: don't lean on the wheelchair, don't play with it, or he won't make eye contact with you, just certain things that a child should know. It's okay, he might not be looking at you, but he hears you. He knows what you're saying. My hope is that this child sees that my son is unique, and that child learns something that they will carry forward to the next interaction with another peer. This is all setting the stage for the next generation to be even more inclusive than what we are. 

16:36 We've talked about how advocacy doesn't need to be complicated or confrontational. Let's talk about what advocacy should be. Advocacy should be clear. Don't muddy the waters with a bunch of technical terms. Author and speaker, Brene Brown says, "Clarity is kindness." I repeat that to myself often. Second, advocacy should be concise. Avoid flooding someone with all the information, give pertinent information based on who you're speaking to. Generally, in everyday situations, highlights are the best anyway. 

17:08 Third, advocacy should be civil. Walking away is sometimes the hardest of the two options. Someone says something cruel to you or worse to your child. It is a visceral and biological response to defend what's yours. Your body has created a way to protect yourself and what's in your care. So someone says something that is hurtful or cruel or false, what happens? You may take a step back, you might turn your body or look away, you may immediately or shortly afterwards square your shoulders, your heart rate increases, your eyes and/or your nose start to tingle. Am I the only one that's a mad crier? If my eyes and my nose start to tingle, it's about to get real. That's all I'm saying. These reactions are your body's natural way to protect and defend. That's how we're wired. But I've learned in those moments, though, that I can stop and count to 10. I can pause and breathe. Only then do I respond gracefully. If after all of that, a kind and graceful response isn't possible, I walk away. Sometimes the biggest and best way I can advocate for my child is to show my child through my actions that not everyone or every instance deserves my attention. I have walked away and then told my son that that person did or said something unkind, and maybe they're having a bad day, and we just need to pray for them. This is when my son gets my energy. He gets my love and my explanation. He gets told how amazing he is and how insensitive others can be. Yes, I tell him that his mom had nothing nice to say. Jesus was not coming out of my mouth. So I chose to stay silent. Then my son and I pray together. I advocate for my child's determination, his self worth, and his fortitude through prayer. I advocate for him by putting him into contact with his true advocate, his Lord and Savior. My son and I have sat in a grocery store parking lot. I was straight up honest, and said that the person we dealt with was not the smartest, they were insensitive. I had been honest, that I'm human. I didn't think I could control my mouth. I told my son, I wasn't proud of that, but I knew my limitations. I have explained that leaving the situation was more important than being right. God calls us to be kind. Me being quiet was as kind as I could handle in that moment. I show my son that I'm human and others can hurt us, but they cannot break us. I show my son that he has the right and the power to advocate for himself in all situations and sometimes that is walking away. That is not weakness. It is not always wrong to stand up for yourself. 

19:39 All of what we talked about today takes practice. It takes practice and patience and a whole lot of grace towards others and yourself. My hope is to be a force to be reckoned with, but a force that leaves the other person the situation, or our future better off than how it was before I got involved. That includes advocating for my child in everyday situations. Last, but definitely not least, if, not if, it's when I lose my cool or don't advocate perfectly or I completely blow it, I allow myself grace. I remember that I am doing the best that I can. I'm allowed to make a mistake and grow from it. That's when I turn to my biggest advocate, Jesus, and I ask for his direction. I ask for his help, his advocacy, because ultimately, has there ever been a bigger and better and more perfect advocate than our Lord and Savior Jesus Christ? 

20:51 Thanks 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. Be sure to subscribe to our monthly newsletter @takeheartspecialmoms.comm. Follow us on Instagram or Facebook @takeheart pecialmoms. If you have any questions or comments, follow the links in our show notes. We love hearing from our listeners. Our email address is take heartspecialmoms@gmail.com. Thank you for listening. Next week all three of us will wrap up this month on Advocacy: Advocating with Kindness.