Take Heart

How to Advocate at the Hospital with Carrie M Holt

• Amy J Brown, Carrie Holt and Sara Clime • Season 2 • Episode 52

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It can be a difficult balance between fight or flight when it comes to advocating for our children with special needs. With Christ in us, we can learn to fight for what our child needs, or rest and wait. Today, Carrie reminds us of nine practical tips for advocating, the greatest to remember is that Jesus is our advocate. He will equip you with what you need.

September 14, 2021; Ep. 52

Timestamps & Key Topics:

  • 0:19-   Intro
  • 1:07-   Fight or Flight?
  • 3:58-   The Golden Rule
  • 4:50-   Assume Best Intentions
  • 5:56-   Be Humble
  • 7:03-   Use “I” Statements
  • 8:36-   Don’t Burn Bridges
  • 9:50-   Proactive/Reactive
  • 11:12- Do Nothing
  • 12:12- Find Your Person
  • 13:46- Be Organized
  • 16:04- Spiritual Warfare
  • 19:28- Outro

Episode Links & Resources:

  • Scriptures Mentioned: Matthew 7:14, Ephesians 6:10-19, I John 2:1
  • Blue Letter Bible App Definitions of Advocate

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 (0:19) 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 to our podcast, leaving a review and sharing it with others. Amy, Sara, and I want to thank you for joining us today.

(1:07) Hi, there, it's Carrie M. Holt today, and this month's theme is about advocating with kindness. Welcome to season two. My son has had over 50 hospital stays in the last 14 years of his life, and that doesn't include visits to the ER, all the different therapy that we've gone through, and just routine checkups with doctors. Through all of this, I have been thrown into the role of being an advocate for my child. A few years ago, we had one hospital stay in particular that really tested me. I actually ended up in his bathroom of the hospital room sobbing because the attending doctor he was under wasn't listening to us. Yes, he had had a fever. Yes, there were some things going on, but we had this huge family trip planned, and this doctor was telling us he wasn't going to discharge us until after our trip would have started. So I decided to put my big girl pants on. We fired the service we were under, and switched to doctors who knew us and were willing to listen to us and discharge our son safely in time for the trip we had planned. I know that you know what I mean. You have had to convince that nurse that even though what you were telling her didn't sound like something from her medical training, you know your child, and this is true, what you're telling them about them. You've had to advocate for fair and equal education, for access to different things at school. Maybe it's been a wheelchair or some type of medical device like hearing aids, with your insurance company, or some type of state waiver program. Advocating can be exhausting, especially if you feel like you're always on the defense. You're always having to fight for what your child needs. That's certainly true about the life of a special needs parent. With our human nature, I feel like with advocating we tend towards two different extremes. We're all fight or all flight. What do I mean by that? All flight is just that we flee from confrontation. The doctor's always right. The nurse is always right, so we're just going to let them run the show. Or we're “all fight”. I think we tend towards this one more than the “all flight”, but we also have our times of flight too. With “all fight”, it's demanding what we want. It's “we're always right.” We know the best about everything. The hospital has to stick to our child's home schedule, get their meds on time. We're just always ready to fight for what our child needs. I'm not saying that either of these things are bad in and of themselves. I think the balance of wisdom and advocating with kindness is being somewhere in between the fight or the flight. Today I want to talk about just some practical tips about advocating with kindness. 

(3:58) The first one is kind of a given, but I want to mention it anyway. It's the golden rule. The Bible tells us that we are supposed to treat others the way we want to be treated. This might go without saying, but I want you to think about your own children. Do you ever want to give in to their demands or their requests when they're whining at you yelling at you or screaming at you? Chances are, we don't. Right? Tone of voice is so important. I'm the biggest work in progress here, ask my husband. Think about your tone when you're speaking to someone that you are dealing with, with your child whether that's a school, a doctor, a nurse, administration. Sometimes the best care we've received is because we showed kindness too, and we were understanding of the situation that they were coming from. 

(4:50) The second thing is to assume best intentions. I am a huge violator of this tip because I tend to think the worst about people instead of the best about people. Just remember that the people that you're dealing with, they're people too. I love this quote, and I use this in a hospital talk that I give a lot. It's "Show kindness to each person you meet, because each person you meet is fighting a battle that you know nothing about." That is certainly true about us when we are in the hospital with our son. That's also true about the nurses and doctors and school personnel that are sitting on the other side of the table. I really have this tendency to assume that this person doesn't want to help me, or they're just choosing not to understand. When you go into a situation, assume best intentions, that they want to help you, that the nurse is trying to understand you. Give them kindness, and assume that they might be dealing with something too, that they're carrying into the situation with you today. They're just having a bad day. 

(5:54) The third tip is to be humble. You know your child well, but the truth is, we don't know it all. They also have a job to do. So ask questions. In that situation, after my meltdown, I began to ask a lot of questions, trying to understand what the hospital protocols were for a child that had a fever in my son's particular situation. In this situation, he has an infusion port. So immediately, they assume that he has sepsis or an infection in the blood. How can we work together to follow the protocols, which is typically about 48 hours of IV antibiotics, but still get my son discharged in time to go on a family vacation. I had to understand that I didn't know at all. Then I needed to listen to what they had to say also. In fact, I actually had my son's pulmonary doctor tell me, "Carrie, I would advise you not to leave the hospital against hospital advice, because it creates all kinds of issues." I will tell you that I did not do that, but I was slightly tempted because I was so frustrated with the situation. 

(7:03) The next tip is about communication. It's about using I statements instead of "you" statements. I am seeing the situation this way, and also asking a lot of questions. One of the things that we have at our hospital is called Family Centered rounds. They encourage the caregivers and family members to be in when the doctors are rounding. The residents might be giving information, and a lot of times sometimes the things that they say are not a real accurate picture of the whole child. I try to make sure that I'm asking them questions about the medication, or whatever it is they're stating, "My observation has been this." Also, I think it's really important to use what they call the sandwich method, or maybe it's the hamburger method. Basically what this is, is putting a negative statement sandwiched in between two positive statements. I did a little bit of research on this, and apparently there's some criticism that the actual advice that you're trying to give sort of gets diluted in the positive statements that you're trying to say. I think it's really important to say, "I'm so glad you're my child's nurse today, but I need to explain this to you. You're doing a great job with this, but he really prefers it done this way." Also understanding that they are the trained nurse. Maybe you are a trained nurse also, but acknowledging their important role in your child's success, whether it's at school, the workplace, the medical setting, or church.

(8:36) The next tip is don't burn bridges that you'll have to recross. When I requested to switch services, during this inpatient hospital stay, it was really important for me to remember that I might have to deal with this specific doctor again. It probably would not be a good idea to yell at him in the hallway, even though I felt like he wasn't listening to me. He was actually walking away from me when I was trying to speak with him. So I had to go back to the room and wait for him to actually come back and do rounds. Think about your situation. Will you need to deal with this person, again? Use great care and wisdom in your interaction with them. I think it was okay for me to request to switch the attending doctor that we were under. I also didn't think it was okay for me to cuss him out, even though my anger was really boiling. After the situation, I also went back and had a conversation with our son's pulmonary doctor, asking him for advice on how I could have handled the situation better for that particular hospital stay because we have had to deal with that doctor again. Thankfully he hasn't shown any recognition over this situation. He's been a professional, and we just haven't brought it up. But be careful about burning bridges that you might have to recross again. 

(9:50) Here's another tip: be proactive instead of reactive. Use offense instead of defense. So my go to personality is to always be on the defensive. I assume that this building isn't going to be accessible, that this person is not going to include my child. During a recent trip that we had. This was a couple years ago, we were flying with my son's really expensive power chair. We've had bad experiences with this in the past, and I know you've probably heard the stories. I had a friend give me some advice. He said why don't you put a note on your son's wheelchair that says, "Thank you for taking great care of my child's wheelchair today. Here is some candy to thank you for this." So I did that. I thought, you know what, that was such great advice because again, it's going back to assuming that best intention. They don't want to take bad care of my son's wheelchair. I don't think they want to hurt it, but they just don't know. So being really clear with directions, having them laminated on the wheelchair, and then also thanking them, I think did give us just a much better experience with flying with his wheelchair during that particular trip. 

(11:12) So another tip is do nothing. Waiting. This might seem kind of a weird piece of advice for advocating. I don't know if you're anything like me, but I am a "fix-it" type person. I'm a bit of a control freak. I think sometimes as special needs moms, we definitely slip into these roles. When a situation comes up, I immediately want to fix it right now. I don't do well with sitting in conflict. I want to wrap it up in that nice, neat package and move on. Sometimes the best thing to do is just to wait and do nothing because the situation will work itself out on its own or more information will come into play that you didn't know about that would help the situation. Sometimes I'm immediately on the phone trying to fix something when all I needed to do was just to wait and let God work and pray instead of using my hands to control every situation. 

(12:12) The next tip is find your person, find your advocate, find someone in your corner. In the month of June, during our Take Heart Interview Series, Amy interviewed Laura Hernandez from Mama Systems. One thing that really stuck out to me that she said was she found her person in their school that was willing to understand their situation, listen to her and be their point of contact. When this other school personnel had questions about their child's behavior, and in this case, it was reactive attachment disorder and behavioral situations that they would run into. This person at the school was their person. She would also write letters to the teachers before the school year started to educate them about her child's behavior for them to understand what was going on. Again, that goes back to some of the other tips that I've been talking about. Sometimes we need someone to go to bat for us. Maybe it's that social worker at the hospital to coordinate care, or to be a sounding board. I just want to encourage you to pray for that person to be in your corner. It might be someone long-term for the duration of a hospital stay or for years on end with particular care that you're going through, or maybe it's just something short. Also be willing to trust. Trust is such an important part of advocating but to trust that person for them to trust you and be a good communicator, so you can have that person in your corner when you need them. 

(13:46) Another tip is to be organized. I know there's quite a few. This is just about asking questions, especially when you're in a medical situation. This is sort of my area of expertise because I speak about this at the hospital. I speak about Family Centered Care. I have done a lot of training with hospital staff from the family's perspective of what you should do. These things can carry over to any kind of situation that you're in.  When you're going into an IEP situation, or a doctor's appointment, especially when something is new and you kind of have that deer in headlights feeling of they're using words you don't understand, Have a notebook. So I want to encourage you to have just a medical notebook, maybe a school notebook. Have things assigned, that anytime the phone rings, you pick up that notebook, and you write things down. You keep track of information. You ask questions. You're writing the names of words. Don't be afraid to ask them to spell something for you. Dysgraphia, dyscalculia I don't even know if I can say those words right. All these words can be very confusing and it's important to have them spelled correctly so you can go back and research them. I know I've had to deal with a lot of insurance issues, making phone calls, doing state hearings for medical equipment for my son through his waiver program. So I am very careful, my husband taught me this, when I make a phone call to write the date, to write the name of the person who I'm talking to. A lot of times, they won't give you their last name, but they will give you their last initial, and that's really important, to keep a good running log of your interactions with people. So that way, when things aren't getting done in a timely fashion, you can go back and say I spoke with this person on this date and this person on this day, and it's been three weeks. My son's wheelchair has still not been ordered, or whatever it is that you're needing to fight for with your child. It helps you to stick with the facts, especially when you feel really angry, and frustrated. I've had times when I've cried on the phone. Being organized and writing things down can be such an important part of advocating with kindness, because you're equipped with those tools. 

(16:04) Lastly, I think this is one thing that we need to keep in mind. As a Christian and as a believer in Christ, the last tip is to be a testimony. Please remember that Romans tells us that we do not wrestle against flesh and blood. These are spiritual battles, and we need to take up the armor of God. Evil does not want to recognize that our children are created in the image of God, and that you can use your situation to have joy, to show others hope, to be a testimony of God's love and faithfulness and grace and care. You are showing others that your child has value and worth not because of what they can do, but because they've been created in God's image. Through your handling of all these different situations, you want others to see Christ in you. Remember, to pray for wisdom, to pray for strength, and remember that sometimes we're not wrestling against flesh and blood. These are spiritual battles that are going on.

Lastly, I would just like to close with some thoughts about Jesus, He is our perfect advocate. I was looking at that word advocate in the Blue Letter Bible app, and it means "summoned, called to one's side, especially called to one's aid." In this last definition was something that really stuck out to me, "of the Holy Spirit who is designated to take the place of Christ with the apostles to lead them to a deeper knowledge of the gospel truth, and give them the divine strength needed to enable them to undergo trials and persecutions on behalf of the Divine." The Holy Spirit is doing that for us. He is our advocate with the father, who helps us in our weakness. He's interceding for us when we don't have the words to pray, we don't have the wisdom that we need. He searches out our hearts and minds. He helps to lead us also, not just the apostles, but also into that deeper knowledge of the gospel truth, to give us the divine strength that we need to go through these trials and persecutions. Let me pray for you today. Heavenly Father, I just ask that you be with each of our listeners today. That you will help them give them wisdom and strength, to be able to advocate for their children, to assume the best about others, but that you would also provide everything they need. Provide someone in their corner. I pray that they will remember that they're not wrestling with flesh and blood, that sometimes the things that we struggle with are spiritual battles, and that evil would like anything, but to stifle our witness and our testimony of us being able to show joy and hope to others. Thank you, Father, that nothing can separate us from the love of God, and that the Holy Spirit is our intercessor, who intercedes for us when we don't have the words to pray. He searches out our hearts and minds and will give us the divine strength that we need to walk through these trials, to proclaim your truth and to be able to be the parent and the mom that we need for our children. In Christ's name. Amen.

(19:28) Thank you for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are so grateful you're walking on this journey with us. Be sure to subscribe to our monthly newsletter at www.takeheartspecialmoms.com. Follow us on Instagram and Facebook @takeheartspecialmoms. If you have any questions or comments, follow the links in our show notes. We love hearing from our listeners. Thank you for listening and listen in again next Tuesday as Sara will share about advocating with kindness.