Month: August 2024

  • How to Keep Your Neurodivergent Child Calm in the ER

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    How to Keep Your Neurodivergent Child Calm in the ER

    “Should we go to the ER?” I asked, as I watched his face get redder and more swollen.

    C, my neurodivergent son, woke up rubbing his eyes. It seemed normal at first. Who doesn’t give their eyes a good rub to shake the dreams away and confront the day?

    But then he wouldn’t stop rubbing his eyes, then his cheeks, then his neck.

    C, Christy's autistic son, sits in the ER with his orange iPad in his lap, a bright green wrap around his arm holding his IV in place, and eyes bright red and almost swollen shut. To the left the caption reads, "How to Keep Your Neurodivergent Child Calm in the ER, and Three Proven Strategies that Will Help."

    Red, angry blotches started to cover the upper half of his body. His eyes started to swell, and clearly, he needed medical attention.

    The Warning Signs

    We believe C doesn’t feel pain in the same way we do. He won’t complain of sickness until a fever takes hold. He can get cuts and bruises that would put tears in most grown men’s eyes, and he barely notices – until blood starts to drip.

    Or maybe it’s hard for him to communicate that he doesn’t feel good. He has a hard time finding words to describe the source of pain, what the pain feels like, and how long he hasn’t felt well.

    This day was no different. He seemed more tired than usual, but did not complain. He just kept rubbing and scratching and was restless despite his need for snuggles.

    We tried cold compresses, Benadryl, and a bath. Of course it was the weekend, right before the holidays, so the pediatrician’s office was closed.

    Then he started coughing.

    I called a nurse friend for help.

    “What should I do?”

    “It sounds like an allergic reaction, and if he’s coughing, he might be going into anaphylaxis. Take him to the ER,” she said.

    Before Heading to the Hospital

    This was the year of hospital visits. My oldest showed signs of pneumothorax (hole in the lung) after a wrestling tournament. An ER doctor diagnosed my middle son’s stomachache as intussusception (when the intestine turns inward on itself), but before the helicopter came to pick him up, a second surgical consult cleared him of the condition.

    At this point, the pediatric nurses in the ER knew us, and we knew them.

    I narrated to C as I packed up the essentials. I wanted him to know where we were going and why. I quickly put together a backpack with:

    ➤ Water bottles

    ➤ Phone chargers

    ➤ iPad

    ➤ Snacks

    ➤ Comfy blanket

    ➤ Mickey plush that attends all the doctors visits

    My husband stayed with the older boys and C and I jumped in the car to head to the hospital.

    3 Proven Strategies to Keep Your Child Calm in the ER

    A teddy bear sits at the bottom of the image with a stethoscope over his "heart". The caption reads, "3 Proven Strategies to Keep Your Neurodivergent Child Calm in the ER."

    When we got to the hospital, we rushed right to the Pediatric ER.

    The first thing I did was let the nurses know about C’s diagnosis and provided a bit of background on the escalation of his symptoms, his communication style, and how his autistic traits interact with stress. This is a very personal decision. Some families feel more comfortable NOT disclosing the diagnosis – but in this situation, disclosing C’s diagnosis felt important.

    Because of his symptoms, he went right to triage and then to a room. Shortly after, three more nurses and another woman, who introduced herself as a social worker appeared, and friends… what they did next changed everything!

    Strategy 1: Child Life Specialist

    A Child Life Specialist is a health care professional who is trained in the emotional and developmental needs of children. They help children and their families understand medical issues and give psychological and emotional support. 

    And did we need emotional support – because behind the child life specialist was a nurse with a bag of saline and an IV needle.

    The child life specialist introduced herself to C and explained why she and three other nurses were in the room. She then explained that they needed to help his body feel better and one of the ways to do that was through a needle in his arm that could deliver medicine.

    Strategy 2: Explain What to Expect, What is Happening, and Why – to Your Child

    Better communication between medical providers and patients leads to better health outcomes. There is a ton of research that supports this – and it is also true for neurodivergent pediatric patients.

    The fact that the child life specialist came in and talked to C first, was a first for me. Most medical providers talk to me first and speak as if my son isn’t even in the room. I can’t know for sure, but I imagine that my son’s anxiety increases when people talk about him, not to him, when he is sitting right next to them.

    As the nurses prepared the IV, the child life specialist continued to talk to C, and only asked me for clarification about what he said.

    Strategy 3: Sensory Items

    A recent study from the School of Medicine, University of Alabama at Birmingham, showed improved patient experience by “having [sensory] tools readily available to aid with sensory regulation and comfort of patients during healthcare encounters.”

    So when one nurse approached C with a needle in her hand, my heart rate increased… until the next nurse came over with a toy bee that buzzed. And the third nurse approached with an iPad and lidocaine spray.

    The child life specialist introduced her three nurse “friends” and explained again that they would need to help C by putting medicine right into his body. The nurse with the buzzing bee let C hold it, buzz it on his arm, and put it on my arm so I could feel it too. Then the nurse with the lidocaine spray and iPad approached. She showed C the can and explained that it would make the area where they wanted to put the shot not feel pain. She offered the iPad, but he was happy with his own.

    And ya’ll… He let her spray his arm. He let the buzzing bee flitter along the area that they wanted to put the IV, and then the two nurses talked and talked about the game C was playing on his iPad, while the nurse with the IV successfully inserted the needle. She had his arm wrapped and the saline bag dripping before he even knew something happened!

    I know, I know – this isn’t always the case. I expected him to rip the IV right out from beneath the green gauze that held it in place. The tears, quick escape, and chase down the hospital hallway I expected, never happened.

    Maybe it was because they explained to him exactly what to expect, when, and why 🤷‍♀️

    All I know is that whatever the doctor said, I felt like we were in good hands.

    Managing the Emotions of a Really Scary Diagnosis

    When the doctor came in with a grim look on her face, I felt all the relief turn into panic.

    She said that they thought C had Stevens-Johnson Syndrome, a skin disorder that causes flu-like symptoms, a rash that blisters, and eventually leads to the skin peeling away.

    Google was not my friend. I immediately understood the grim look on the doctor’s face.

    They needed to run more tests, which meant a blood draw.

    And I needed to wait for the results.

    Those moments will forever remain etched in my brain.

    Again, it was the year for really scary diagnoses that turned out to be not so scary at all – but the resulting trauma of thinking your child is in a life-threatening situation doesn’t go away.

    This was no different, and I feared our luck was running out.

    I called my nurse friend back and asked for her thoughts. “I bet it’s out of an abundance of caution. Stop Googling!” she said.

    As it turned out, she was right. The tests did not show the super scary Stevens-Johnson Syndrome. Instead, they diagnosed him with an allergic reaction, gave him antihistamine through his IV, and sent us home.

     

    Improve Communication with Your Child's Medical Team

    Maybe the medical team’s intentions were good. Provide timely updates based on what we see right now… Prepare mom for the potentially life-threatening prognosis…

    But the delivery and after shocks of those conversations sucked.

    How that conversation played out affects how I communicate with medical professionals now.

    I am always braced for the worst possible outcome, and fearful that I am over reacting.

    Because after tests confirmed my child’s life was not at stake, the docs sent me home with instructions to monitor his condition and come back if it gets worse.

    So, I didn’t sleep.

    I still check on him, years later, when he sleeps in – as teenagers do – to make sure he is still breathing.

    This is why I am hosting a conversation with Tiffany Ryder, PA-C. As a former Emergency Room Physician Associate, she’ll pull back the curtain talk to us about her experience working in the emergency room, and how we can improve communication with our child’s medical team. 

    You’ll walk away from the conversation with a better understanding about how medical providers process what you tell them and how that guides their clinical decisions.

    It’s sure to be both informative and entertaining. Tiffany is a brilliant storyteller and ties anecdotes from her time in the emergency department to actionable steps we can take to better advocate for our kids.

    Experiential Life community members can find the conversation in the resource library, or join the conversation live on August 27, 2024 at noon EST.

    If you aren’t a member with access to the app – join the waitlist today!

    Become an Alpha Tester

    Subscribe below and be one of the first to test the app in real life, get advanced access to our resource library, and join exclusive webinars and events.

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    • 5 Tips for Better Communication With Your Neurodivergent Child’s Provider

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      5 Tips for Better Communication With Your Neurodivergent Child's Provider

      Every time I need to advocate for my son (whom I lovingly refer to as C), I feel the pull of anxiety try to quiet my voice. It’s a struggle… I know exactly what my autistic son and my family need to make our lives easier – but sometimes it’s hard to explain it in a way “they” understand.

      Who are “they”? It feels like everyone. The school administrators who wanted him to be in a self-contained classroom. The speech therapists who said, “we want him to use words, not a communication device.” The insurance company who wanted to deny our claims because – well, who knows why – it felt like they just wanted to make things harder.

      A female speech therapist with long brown hair in a ponytail works with a young girl with long brown hair. They sit at a table with various worksheets showing phonetics. The caption reads, "5 Tips for Communicating with Your Neurodivergent Child's Provider."

      If I could just learn to talk like they talk, use the words they use, know the things they know (and sometimes things they don’t know) maybe I’ll seem smart enough to be taken seriously.

      Breaking Through Imposter Syndrome

      I’m not new to imposter syndrome, but pushing back against professionals, who are experts in their fields, to make sure my son gets what he needs, is a whole new level of imposter syndrome.

      But I’m also not one to retreat from a challenge. Instead, I do what my anxious brain loves to do – research. I write down questions based on my research. And I go to each of my appointments with a list of questions in hand. Let’s be honest… every time you meet with a new provider, you learn some new acronym, word, or phrase that requires explanation.

      It’s a strategy that’s served me well for over a decade – I think because it feels collaborative, not combative.

      For instance, during our first Individualized Education Program (IEP) meeting, I needed the team to remind me what Least Restrictive Environment (LRE) meant. Then I was able to ask, “is a self-contained classroom truly the least restrictive environment, when he’s never been in a classroom before?”

      C ended up in a general education setting with a 1:1 aide.

      Asking questions helped us get on the same page.

      The Quest to Talk Like “They” Speak

      Two people sit at a table, each with an iPad in front of them, as if to take notes during a meeting. The caption reads, "Raising Your Neurodivergent Kid: Why You Need to Communicate Before You Advocate."

      Asking questions also helped me understand more, which helped me become a better advocate – with the confidence to lean into my gut instincts and rely less on agreeing to everything every professional recommended.

      I also began to understand their jargon and use the words they use. And the more I understood, the better positioned I was to ask the right questions to get to the right answers for C.

      I noticed less confusion and more effective communication between the people that work with C and me.

      Here are 5 tips for better communication between you and your neurodivergent child’s provider:

      1. 1. Prepare and Prioritize: Before meetings or appointments, take the time to write down your child’s needs, strengths, and any questions you want to ask. For example, if your child struggles with transitions at school, come prepared with specific examples and suggestions, such as implementing a visual schedule to ease anxiety. If you find you have a really long list of priorities or concerns, try to pick no more than three to help keep your conversation focused.
      2.  
      3. 2. Take Notes: Take notes during your appointments or meetings, and if you can’t do that, ask to record the conversation on your phone. This will help you reflect on what they said and prepare any follow-up questions for the next meeting. Also – remember that you don’t have to agree to anything the first time you hear or see it. You can ask for time to think about it and make an informed decision.
      4.  
      5. 3. Express Concerns Respectfully: “You catch more flies with honey than vinegar”. If you don’t agree with something suggested, you might say, “This approach isn’t working the way we hoped. What other strategies can we try?” This opens the door to a collaborative discussion rather than a confrontational one. There is a time and place to be assertive and “no” is a full sentence. But as the saying goes, “pick your battles.”
      6.  
      7. 4. Collaborative Problem-Solving: Remember that you are on the same team as your child’s providers. You want to approach the conversation as equal partners. For instance, when discussing an Individualized Education Plan (IEP), give concrete examples about what you know about your child. You might say, “Based on what we’ve observed at home, alternative seating arrangements work best. Could we try a standing desk?” Show that you value the professional’s input while advocating for your child’s unique needs.
      8.  
      9. 5. Follow-Up and Stay Involved: If you don’t hear from the professional first, send a follow-up email summarizing the key points discussed and any agreed-upon actions. Staying involved and maintaining open lines of communication shows your commitment and helps keep everyone accountable – and it’s always good to have information in writing.

      Moving Forward on the Advocacy Journey

      Once I got comfortable asking questions and saying, “no” to things that did not feel aligned with what C needed, I wanted to do more. Share my experience with others and educate decision-makers about needed changes to make the community better for my son and other neurodivergent people.

      The more I shared, the more doors opened for opportunities to share and educate. I started to apply for boards, commissions, and task forces aimed at improving services and supports for neurodivergent people.

      And that experience completely changed my life. I found a passion for health and disability advocacy. I met incredible leaders and advocates dedicated to creating positive change for neurodivergent people. I continue to learn SO much from this work, and there are seats at the table for parents like you.

      If you are interested in improving your advocacy skills, I am hosting a conversation for the Experiential Life Community, Raising Neurodivergent Kids: Unique Opportunities to Become a Better Advocate.

      This webinar is perfect for parents and caregivers who are eager to improve their advocacy skills and want to learn ways to engage more deeply in the decision-making processes that affect their children’s lives. Whether you are just beginning your advocacy journey or are a seasoned advocate looking to expand your influence, this webinar will offer valuable insights and actionable strategies to help you make a lasting impact. You can learn more and register here.

      And for Experiential Life Community Members – if you can’t make the live conversation, it will be available to view at a time that works best for you when the App launches. 

      If you are not on the waitlist to be part of the community for parents and caregivers raising neurodivergent kids, there’s still time! Click the button below to learn more. 

      Join the Waitlist

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