Parenting

  • Why I Broke Our Holiday Family Traditions and Started New Ones Instead

    Why I Broke Our Holiday Traditions and Started New Ones Instead

    Holidays for neurodivergent kids can be rough… Am I right? The change in routine, the amount of socializing, and all the new/different sensory experiences are a LOT. And there’s so much pressure to keep alive the traditions passed down from generation to generation.

    But what do we do when holiday traditions trigger our neurodivergent kids?

    I’ll never forget the last time I spent a holiday with our extended family. My mom’s side of the family is HUGE… Like more than 60 people huge. When the whole family gets together it is pure chaos, a ton of food, a lot of laughter, no room to sit, and LOUD, like really really loud.

    We don’t live close to most of our family members, and it takes between 1 and 2 hours to get to where they live. And while our family loves a good road trip, it makes for a long day – especially considering the above.

    So, there we are, walking into a townhouse FULL to the brim of ALL the people. Asking for hugs, taking our coats, dodging the open door, throwing a football over our head. Again…pure chaos.

    And there was a time I absolutely loved the chaos.

    But not this time. Not when I knew immediately that I made a big mistake. Because this is C’s version of a nightmare. People he doesn’t really know, asking a ton of questions, commenting on how much he’s grown, wanting to touch and hug him… So much noise, stifling heat – because ALL the people – no room to move and no place to escape.

    We pushed our way through the living room, into the kitchen, where we found a set of steps to the basement. It was like a sweet refuge for my boy. Less noise, less light, less touch, less smell… And he could see who was coming at him. He could attempt to control the environment.

    The family wanted to know why we weren’t being social. They didn’t understand that it wasn’t a choice – it was a need. We needed to be away from everyone so C could feel and be safe.

    And that’s when I realized that the feelings of my extended family members didn’t supersede my son’s needs.

    That was the last time we spent the holidays with that side of the family. Not because we are jerks or don’t want to be around them. It’s because we can’t be around ALL of them ALL at once.

    It doesn’t work for our family.

    And realizing that I had a choice, that our family chooses our family traditions – that I didn’t need to hold on to something that doesn’t work for us simply because everyone expected it – well it was freeing AND empowering.

    Here's the thing...

    If you feel weighed down by the expectations of others during the holiday season, maybe you don’t have to. Maybe you can also let their expectations and old traditions go – and create new traditions that work better for your family.

    We decided to prioritize fun over everything else.

    👏 We don’t get dressed up for the holidays anymore. ALL holidays are officially PJ days in our home.

    👏 We stay home for ALL holidays. And we invite family and friends who respect the accommodations C needs to make holidays enjoyable.

    👏 We don’t force anybody to do anything they can’t or don’t want to do. 

    This goes for anyone who visits our home for the holidays. If it’s going to be fun, it’s gotta be flexible. If it’s going to be flexible, we’ve gotta know what we can do to help make it happen.

    Want to know something?

    We are ALL so much happier staying home, in our pajamas, eating the food we like, where and when we want. We are free to be ourselves and we are surrounded by people who prefer us to be who we are, rather than who they expect us to be 💕

    AND, if any of this resonates, please share this article with your network and subscribe to the newsletter to get instant access to future articles, weekly advocacy tips, exclusive event invites, and news you can use.

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    • How to Keep Your Neurodivergent Child Calm in the ER

      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

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

        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. 

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        • How to Successfully Advocate for Your Neurodivergent Child

          "C", Christy's autistic son, stands with his arms spread out wide, wearing a cowboy hat. He is in an empty waiting room. The caption reads, "How to Successfully Advocate for Your Neurodivergent Child. The Not-So-Secret Word that led to an Advocacy Breakthrough."

          The Not-So-Secret Word That Led to an Advocacy Breakthrough

          Every parent wants to do what is best for their neurodivergent kid. Regardless of our kid’s age, we continue to advocate with and for them. And the list of things we should… be doing, considering, and researching… well, it feels endless.

          When our youngest son (if you are new here, I refer to him as “C”) received his autism diagnosis, we did EVERYTHING they told us we should do.

          We had health insurance, and yet, we still paid close to $30,000 out of pocket 👀🤢🤮

          Each time we visited a doctor, any doctor, they referred us to a new doctor, specialist, or therapist.

          What is the price of supporting our neurodivergent kids?

          We had a high deductible. We went to out of network providers just to be seen faster and had appointments 2 to 3 times a week.

          Between testing, evaluations, and follow-up appointments, we spent hours in the car, hours in waiting rooms, hours doing evaluations.

          We lost days, wages, and so much time. We were exhausted and still didn’t really understand any of it.

          And C’s meltdowns turned more frequent and lasted longer. My meltdowns turned more frequent and lasted longer. My oldest son withdrew, my middle son developed his own medical issues, and my husband and I were just barely holding on.

          Looking back, it was just too much.

          “Make happiness a priority and be gentle with yourself in the process.”

          Bronnie Ware

          As the referrals poured in from our doctor, I finally gathered the courage to say, “no”.

          We didn’t need to do it all, all at once. Some of it we didn’t need to do at all. But we didn’t know that was an option.

          And no wonder the meltdowns occurred more often. We were exhausted, overstimulated, dysregulated, frustrated, and confused.

          That year we travelled hours in the car weekly, looked at sterile walls more than the walls of our home, and I knew in my heart it wasn’t sustainable, but how do you defy the “experts”?

          I became really vocal towards the end of the year. I started connecting with other families raising neurodivergent kids, and they connected me to more families.

          And I realized… I need to be a better advocate for my son. I need to model how advocacy works, so he can learn how to speak up for himself. 

          “No,” is a complete sentence. Saying, “no” is sometimes the word that we need most when advocating.

          An empty doctor's exam room sits in the background. Over top is the caption, "Raising Your Neurodivergent Kid, The Not-So-Secret Word That Led to an Advocacy Breakthrough."

          We believe the medical professionals when they tell us what is right for our child.

          But there is a huge gap between what we know about our kids and what they know about our kids.

          13 years later, and I still get calls weekly from people trying to figure it out. They want to honor their and their child’s limitations while not limiting their child’s potential. And now, in retrospect, I can say:

          “You don’t have to do it all today.”

          “You won’t figure it all out today.”

          “You can say no.”

          And the relief I hear is palpable.

          Join the Community for Parents and Caregivers Raising Neurodivergent Kids

          You are not alone! If you, like me, are looking for an easier way to navigate the systems that support your neurodivergent kid, want to meet other parents and caregivers who are passionate advocates like you, and want access to easy to find and understand information and resources, you are in the right place!

          AND, if any of this resonates, please share this article with your network and subscribe to the newsletter to get instant access to future articles, weekly advocacy tips, exclusive event invites, and news you can use.

          Do you crave trustworthy information and resources to help you support your Neurodivergent child?

          Subscribe to the Experiential Life newsletter and get weekly advocacy tips, exclusive event invites, and news you can use - delivered straight to your inbox.

            We won't send you spam. Unsubscribe at any time.
          • Announcing Experiential Life – Raising Your Neurodivergent Kid With Confidence

            Christy kneels to the right of her autistic son. They are outside during autumn, on a paved path. Fallen leaves surround them. The caption reads, "Raising a Neurodivergent Kid with Confidence."

            Raising a Neurodivergent Kid is an Emotional Rollercoaster

            The day the pediatrician said, “you should have your son evaluated for autism,” life changed.

            You remember that feeling, right? The, “what does this mean, what do I do, how will I do it?”

            I followed my gut and immediately jumped into research mode. I wanted to know everything, connect to other parents who might mentor me on this journey, and find the best doctors to help him.

            I didn’t know how hard making that happen would be.

            Riding the Highs and Bracing for the Lows

            The feelings of overwhelm and anxiety still fester, even more than a decade later.

            Everything feels like two steps forward followed by two steps back. Whether it’s celebrating milestones like reading, counting money, or making new friends – or – on the flip side, finding a great provider who suddenly drops your insurance, getting a new diagnosis, or coordinating services, supports, appointments, and life.

            The highs and lows can be extreme and send my stomach plummeting just like it does when I ride a rollercoaster.

            And much like a rollercoaster, the wait (for pretty much everything I need to support my autistic son) can be long. The anticipation builds as I approach the front of the line, and my expectations can either be exceeded or leave me feeling defeated.

            And frankly, I am over the whole metaphorical and yet equally emotional ride. It’s time for a change, and I think you’ll absolutely love what I have planned.

            Parents and Caregivers Raising Neurodivergent Kids Need Support

            The feelings of overwhelm, loneliness, frustration, and hope resonate with every single parent and caregiver I meet.

            When you look at studies on mental health for parents and caregivers of neurodivergent kids, the findings aren’t great. And just about every research paper I’ve read on the subject recommends parent support and better access to resources and information as a way to alleviate some of the stress that accompanies caring for a neurodivergent child.

            I don’t know about you, but finding parent support, figuring out where to get information and resources (never mind finding the time or trying to make sense of it all) is NOT an easy task. In fact, it made me feel even more hopeless.

            What, do I just run around telling every person I know that my kid just got a diagnosis – hoping that it will lead to parent support??? Seriously, where’s the manual?

            I got so frustrated, I built what I needed, knowing that every time I spoke to a parent, they needed it too.

            And, here we are, a decade after building the first solution, and not much change in supporting parents is happening on a large scale.

            It’s time we fix that.

            A laptop sits open with the Experiential Life Landing page displayed on the screen.

            What if you could access all the information you need to support your neurodivergent child - from the palm of your hand?

            The Experiential Life App brings together parents and caregivers raising neurodivergent kids through community, webinars, parent support, and downloadable resources, all contained in a convenient app on your favorite device.

            It’s perfect for parents and caregivers who:

            👉 Crave community, and 

            👉 Need help:

                      ✔️navigating the education and healthcare systems,
                      ✔️communicating with all the providers and professionals, and
                      ✔️ finding trustworthy information and resources. 

            It’s the solution I wanted and needed when we first got the diagnosis. It’s the solution that would have saved me time, energy, frustration, and confusion. It’s the solution that we needed yesterday.

            Join the Community for Parents and Caregivers Raising Neurodivergent Kids

            If you, like me, are looking for an easier way to navigate the systems that support your neurodivergent kid, want to meet other parents and caregivers who are passionate advocates like you, and want access to easy to find and understand information and resources, you are in the right place!

            This community empowers parents and caregivers to support their neurodivergent kid(s) with confidence through:

            💡 Interactive webinars that you can binge watch at a time most convenient for you, 

            💡 Downloadable resources and information from the most trustworthy professionals,

            💡 Parent support groups, so you don’t have to awkwardly ask strangers where to find your people,

            💡 Ask Me Anything sessions with yours truly. I’ve spent over a decade in healthcare and disability advocacy. I founded a nonprofit, accepted insurance as a provider of disability services, served as the Director of Operations for a State Council on Developmental Disabilities, and consulted with organizations and agencies working to improve life for neurodivergent people. I’m your new “insider” BFF.

            AND, if any of this resonates, please share this article with your network and subscribe to the newsletter to get instant access to future articles, updates about the app, and invitations to future events, like parent support groups.

            Do you crave trustworthy information and resources to help you support your Neurodivergent child?

            Subscribe to the Experiential Life newsletter and get weekly advocacy tips, exclusive event invites, and news you can use - delivered straight to your inbox.

              We won't send you spam. Unsubscribe at any time.