by Kayla Myers, Peer Support Coordinator

August 19, 2025

As we navigate the challenges of today's world, from political tensions to economic struggles, it’s easy to forget that the most essential part of our humanity is a simple act of kindness. On Be Kind to Humankind Week, we are gifted an opportunity not only to reflect on the value of kindness but to practice and advocate for it in our everyday lives consistently. As someone who wears multiple hats, from a peer supporter role to an advocate for social change, this week holds deeper significance.

In the role of a peer supporter, I have witnessed the ripple effect of kindness. Whether I was helping a family navigate a mental health crisis, providing emotional support to a caregiver, or simply lending a listening ear to someone in need, the power of kindness is undeniable. It’s in the small gestures. A comforting word, a shared cup of coffee, a reassuring message can make all the difference. For human beings who are fighting silent battles or going through the toughest times, these moments of human connection can be a lifeline.

However, the real challenge we face is extending that kindness beyond our immediate circles, especially in times when it feels like the world is divided. Right now, as a country, we are experiencing deep social and political division, an ongoing public health crisis, and economic instability. We are struggling to keep our heads above water, and many are feeling the weight of uncertainty and fear.

In my eyes, this is precisely the time when kindness is most needed.

As an advocate for mental health and social change, I often find myself pushing for policy shifts and societal reforms that prioritize the well-being of all people. But advocacy doesn’t stop in the halls of government or on social media platforms. It starts with each of us, in our homes, neighborhoods, and communities. The most significant change often begins with small, personal acts of kindness.

We are seeing what can feel like an overwhelming number of issues in the world right now: injustices, scrutiny for speaking out about the wrong that is being done daily, the rise of mental health struggles, and more. But I can only hope, in these moments of chaos, that kindness can act as a beacon of hope, a reminder that there is good in the world despite the noise. With life experience and with my work as a peer supporter, I’ve seen how simple acts can spark real, tangible change.

Kindness isn’t just about being nice; it’s about advocating for justice, lifting others up, and standing together in the face of adversity. It’s about showing up for the people who need us most. And right now, as a country, we need each other more than ever.

What can be done? What can you do? How do you get started? I am so glad you asked! Here is a simple list of ideas that I hope will help spark something within you so you can keep implementing small acts of kindness every day:

1. Listen Without Judgment
   Sometimes, the most powerful form of advocacy is simply being a compassionate listener. When we listen to each other’s stories without judgment or preconceived notions, we validate people’s experiences. Listening is the first step in offering support and understanding.
2. Support Mental Health Initiatives
   Mental health is at the forefront of our collective struggles today. As a peer supporter, I know the importance of advocating for more accessible, equitable, and compassionate mental health services. Kindness means standing with those who need help and fighting for resources that can change their lives.
3. Create Safe Spaces for Dialogue
   In a divided world, we need spaces where people can discuss their differences with respect and empathy. Organizing community discussions or engaging in open dialogues about current events can foster understanding, dissolve fears, and build bridges where walls once stood.
4. Leading with Empathy in Policy
   Whether advocating for healthcare, education, or economic support, it's critical to approach these issues with empathy. Policies that impact human beings should be crafted with a deep understanding of the diverse challenges people face. A kinder, more equitable society requires us to work from a place of care and compassion, not just statistics and numbers.
5. Model the Change You Want to See
   One of the most powerful ways we can spread kindness is by modeling it in our own actions. Whether it's in our families, at work, or in our communities, showing kindness in the way we interact with others sets the tone for those around us. Kindness is contagious. The more we practice it, the more it will spread.

 We are all living through trying times, but these times do not define us. What will define us is how we respond. As individuals and as a collective society, we can choose kindness, not just on Be Kind to Humankind week, but every day. Kindness in the face of adversity can heal wounds, build communities, and drive us toward a more just and compassionate world.

As someone who has walked alongside my peers in their most vulnerable moments, I can attest to the transformative power of kindness. It is the glue that holds us together when everything else feels like it's falling apart. And if there’s one thing I know, it’s that we are all capable of spreading kindness in ways that create lasting change.

So, this Be Kind to Humankind week, I encourage you to reach out. Reach out to a neighbor, a friend, a stranger, or a family member. Let them know they’re seen, heard, and valued. Advocate for policies that prioritize the well-being of ALL people. And, perhaps most importantly, remember that kindness doesn’t just change the world, it heals it.

Kindness is not just a gesture, it’s a movement. As a peer supporter, as an advocate, and as a human being, I believe in the power of kindness to heal, unite, and empower us to create a better tomorrow. Let's make this Be Kind to Humankind week the start of something bigger. Let's make it a reminder that, no matter how dark the world may seem, kindness will always be the light that guides us home.

(Edited and enhanced using ChatGPT)

by Kayla Myers, Peer Support Coordinator

January 28, 2025

April is Autism Awareness Month, a time that holds deep meaning for my family and countless others around the world. My son is almost 9 years old, and he is non-speaking. While he may not use words in the way most people do, he communicates in a hundred other beautiful, meaningful ways. I am always seeking the words for my personal hero, my son.

When I first heard the words “your child is on the autism spectrum,” I felt everything at once: fear, love, confusion, and an overwhelming desire to understand what the future might hold. I imagined the challenges he might face, the misunderstandings, the uphill battles. But what I couldn’t yet see was how much he would teach me. He has taught me valuable lessons about patience, resilience, perspective, and the power of connection that doesn’t require words.

Our days are filled with routines and rhythms that make sense to him. He used to spend hours lining up his toys in a way only he could understand, watching water swirling endlessly down the drain, and listening to the same song over and over again. These are just the things that bring him comfort and joy. They are just a few examples of how he experiences the world. And when I slow down and truly see things through his eyes, I realize how much intention, beauty, and clarity live in the moments that I used to overlook.

He may be non-speaking, but he is never silent. His laughter lights up the room when something speaks his language. His eyes sparkle when he wants to share a moment with me. His hands flap joyfully when he’s proud of himself or when he is excited. And when he’s overwhelmed, I feel his pain in my bones. Even when he doesn’t say, “Mom, I need help,” I know. And I respond with everything I have.

One of the greatest lessons I’ve learned as a mother is this: communication is so much more than words. It’s gestures, eye contact, presence, energy, and love. In our home, we celebrate every form of expression. Whether it’s pointing, using a communication device, pulling me toward what he needs, or simply placing his hand in mine when he’s seeking comfort. These are his words. And they are valid. They are powerful. And this is when I feel so connected to the idea of connection.

I’ve always been a people person. I may not excel at the things most people do, but I get people. I easily read between the lines, I am very aware of the subtle shifts in body language, the emotion behind a glance, the weight carried in a quiet moment. I’ve come to understand that everyone has a story, and that what we see on the surface is just one layer of many. I know that life can be painful. And I find grace in my ability to hold space for others, not to fix or solve, but simply to sit with them in their pain, to truly see them, and to understand even just a fragment of what they’re carrying.

But it’s my son, my beautiful, non-speaking son — who has helped me take that ability to a deeper level. He has taught me how to truly listen without words, how to tune in to the language of presence, energy, and emotion. In walking alongside him, I’ve learned to support what’s unspoken with more compassion and clarity than I ever thought possible.

Autism Awareness Month is about more than awareness, it’s about acceptance, understanding, and celebration. It’s about recognizing that autistic individuals, whether they speak or not, bring extraordinary strengths, perspectives, and beauty into this world. My son has shown me that every child deserves to be seen, heard, and honored exactly as they are.

So if you’re reading this, I invite you to lean in. Listen. Learn. Unlearn. Listen to parents like me, yes — but more importantly, listen to autistic individuals themselves. Their voices matter most. They are the true experts on their own experience. And often, the very people the world tries to speak for.

Let’s build a world where all kinds of communication are valued, where neurodiversity is not just accepted but embraced, and where being non-speaking never means being unheard.

To my beautiful boy: you are brave, man, you are brave. You are brilliant and I know more brilliant than I could even understand. And you are deeply loved, exactly as you are. I will always be your voice until the world learns how to truly listen. 

Edited and enhanced by ChatGPT

by Beth Ayers, Family Support Training Coordinator

March 10, 2025

March is daylight savings time when we turn our clocks ahead and gain an extra hour of daylight in the evenings. People look forward to this day all winter. But for some this change can be hard. Turning our clocks ahead means getting up in the dark. It takes our bodies time to adjust to losing an hour of sleep and getting up an hour earlier. Daylight savings time has caused me to think about change in general and how there are always upsides and downsides to change.

I find change in general hard. I think accepting change is my first problem. I don’t want things to change. I don’t like the unknown. The adjustment period is hard. The bad seems to outweigh the good. Or maybe I just focus on the bad more. Change can be small like a TV show ending or it can be giant like the death of a loved one. Change is also harder when I’m not the one initiating or deciding on the change.

I have had a lot of changes in my life over the past year. My family moved from a home we lived in for 20 years, where both my children were raised. We moved from the city I had lived in my whole life to the country. The Family Peer Support pilot project I had been working on for 2 years ended which meant leaving the pediatric clinic where I worked for 3 years and the families I worked with. And the TV show Blue Bloods, which I loved, ended after 14 seasons. Not the biggest change, I know. But I did cry.

So how do we make the best of change, especially change that is unwanted or unexpected? Acceptance is the first step. Before I can adjust to it, enjoy it, or grieve it, I have to accept it. Fighting it or ignoring it keeps me stuck and doesn’t stop whatever is changing. After I’ve accepted it, I acknowledge my feelings. I’m sure we’ve all heard the old adage "don't cry over spilled milk." According to Generative AI, “it is an old proverb that means it's not useful to be upset about something that has already happened. The phrase encourages people to focus on moving forward instead.” I don’t agree with this. I do think it is important to focus on moving forward but it is useful to acknowledge our feelings first and allow ourselves to feel them. If it is an undesirable change, we may feel sad or angry. Grieving is a normal part of the process. It can be hard to move forward and embrace the change if we haven’t dealt with our feelings. Things that I have found helpful in processing my feelings are journaling, professional counseling, talking to a friend, and prayer. And never underestimate the power of a good cry. Sometimes it can be helpful to take a break when the feelings become overwhelming. I find exercise, music, and a good movie or book helpful to take my mind off things for a while.

After I have allowed myself to feel my feelings about the change, I can focus on adapting to it. I can look forward to the positive outcomes of the change. If the change resulted in losing something or someone, I can reflect back with gratitude for the time I had and remember the good. I look ahead in anticipation of new things to come. The key for me in embracing this time is choosing my attitude. Whether I am happy about the change or not, I can choose a positive attitude of gratitude. I can expect good things instead of anticipating the negative. That’s not to say that I deny what’s hard about the change, but I can choose not to complain and appreciate what I can about the situation.

Change is a constant in life. Seasons change, we age, time moves on. As much as I prefer everything to stay the same, to remain with what’s known, to be comfortable, that isn’t always the best for me. I think about the example of a body of water. When there is no water flowing in or out, no movement, the water becomes stagnant and is not conducive for growth. To have a healthy environment where life and new growth can happen, the water has to move and change. New water has to flow in and old water out. Things need to move and change. I think the same is true about our lives. Without change, our lives become stagnant, old, dark, and smelly, with only mold being able to grow. Change lets in light and air and new possibilities for growth. There is some change in my life I will never get over like losing my dad. But there are other changes, positive changes, I also will never get over like the birth of my children. Hard change can also lead to new opportunities. The development of mental health challenges in my family has opened the door for me to be able to help other families as a Family Peer Supporter. I get to use my lived experience, that unwelcomed change that happened, to bring hope and empowerment to other parents and caregivers who are struggling and dealing with change.

So, as daylight savings time ushers in longer days and warmer weather, I hope I can continue to embrace change with openness, acceptance, and gratitude. I hope sharing my experience helps others do the same.

As a parent of a nonverbal child with autism, our journey has been a tapestry woven with both challenges and triumphs. One of the most significant threads in this tapestry has been understanding sensory processing disorder (SPD) and its profound impact on my son. SPD is often found in children on the autism spectrum and manifests in various sensitivities and reactions to sensory stimuli. By sharing our experiences, I hope not only to advocate for my son but also to raise awareness and support others who are facing similar challenges.

Sensory processing disorder refers to the brain’s difficulty in interpreting and responding to sensory information. This can include sensitivities to light, sound, touch, taste, and smell. For children like my son, everyday environments can become overwhelming and stressful, leading to withdrawal or, when multiple irritations stack up, meltdowns.

Simple activities, such as grocery shopping or attending social gatherings, can be daunting for my son. Bright lights and loud noises in stores often lead to sensory overload. I vividly remember a trip to a crowded supermarket; the bright fluorescents seemed to pulse, and the announcements echoed. My son quickly became agitated, covering his ears, his stimming became louder, and he was tensing up. In that moment, I realized that what might seem like a routine errand to others was an overwhelming experience for him.

At home, certain textures can trigger strong reactions. For instance, he struggles with shirts that feel staticky against his skin, finding certain fabrics unbearable. This has taught me the importance of being mindful of his clothing choices and providing comfortable alternatives. Food can also be particularly challenging; he tends to avoid trying new things and prefers to stick to familiar favorites.

Through trial and error, we’ve developed strategies to help him navigate these sensory challenges. Here are some approaches that have worked for us:

1. Creating a Sensory Retreat: We’ve designated his room as a “sensory retreat.” It’s equipped with soft pillows, weighted blankets, dim lights, a soft rug, a rocking chair, and calming toys. When he feels overwhelmed, he knows he can retreat to this safe space to decompress.
2. Establishing Routine: A consistent daily routine has helped my son feel more secure. Knowing what to expect reduces anxiety and prepares him for sensory-rich environments.
3. Visual Supports: Visual schedules, social stories, and his communication device have been invaluable in preparing him for new experiences. By explaining what he might encounter, we can discuss potential challenges and strategies in advance.
4. Stimming: I’ve witnessed how stimming helps my son regulate his emotions and navigate challenging situations. For example, during a busy family gathering, the noise and commotion can quickly become overwhelming. In those moments, I see him begin to pace or hum softly to himself, “eee”. This rhythmic movement offers him a sense of grounding, helping him find calm amidst the chaos. Stimming, or self-stimulatory behavior, encompasses a wide range of actions, such as hand-flapping, rocking, spinning, or making sounds. For many children with autism, these behaviors serve as a way to self-soothe, manage sensory overload, or simply express joy. It’s a natural response to their unique ways of interacting with the world around them.

As we navigate the complexities of SPD together, I’ve learned to embrace my son’s unique perspective. His heightened awareness of sensory details often leads to moments of profound wonder. He notices the rustle of leaves, the patterns of sunlight through trees, he watches every ripple and wave in the water, and the intricate details of everyday life that many of us overlook. This sensitivity, while challenging, enriches our shared experiences and deepens our connection.

Connecting with other parents of children with autism has been incredibly beneficial. Sharing stories and strategies creates a sense of community and reassurance. Support groups, both in-person and online, serve as lifelines for parents seeking understanding and advice. If you’re on a similar journey, know that you’re not alone. Together, we can navigate the complexities of sensory processing and celebrate the unique perspectives our children bring to the world. Let’s continue to learn, share, and support one another in this remarkable journey of parenthood.

Living with a son who has autism and sensory processing disorder has reshaped my understanding of the world. While the challenges of navigating what works and what doesn’t can be overwhelming, they are accompanied by moments of profound beauty and connection. By focusing on understanding his sensory needs and advocating for him, I aim to create a nurturing environment where he can thrive.

by Kayla Myers, Family Peer Supporter

August 27, 2024

In a world that often feels divided by differences, it’s easy to forget the simple yet profound truth that binds us all: our shared humanity. Each day, we encounter many stories, experiences, and perspectives, all reflecting the richness of human existence. Amidst this diversity, one universal thread has the power to weave us together, kindness and empathy toward others who may appear different from ourselves.

Kindness isn’t just a gesture. It’s a fundamental expression of respect and empathy. It’s the gentle smile shared with a stranger, the supportive words offered to a friend in need, and the understanding extended to those whose paths we cross. It’s a language that transcends borders, cultures, and ideologies, reminding us of our common thread. Kindness encourages us to see the world through others' eyes. By practicing empathy, we bridge gaps in understanding and reduce the barriers that separate us. This doesn’t mean we are obligated to agree on everything, but we can still acknowledge and respect each other’s experiences and feelings.

Kindness can lead to significant social changes when it becomes a shared value. Communities that emphasize empathy and support tend to be more resilient and cohesive. Kindness can bridge divides, reduce conflict, and promote a culture of inclusivity. Consider the impact of kindness on issues like mental health. A culture that values kindness can reduce stigma and encourage individuals to seek help without fear of judgment. It can also combat loneliness and foster stronger social connections.

While the benefits of kindness are clear, it's not always easy to practice. Life’s stresses, personal struggles, and societal issues can sometimes make it difficult to maintain a kind disposition. However, recognizing these challenges is the first step towards overcoming them. With that being said, practicing self-kindness is a crucial part of overall change. You can't pour from an empty cup, and being kind to yourself gives you the emotional resources to extend kindness to others.

Being kind to humankind starts with a conscious choice. It requires effort and intention, but the rewards are immense. As we navigate our lives, let’s commit to making kindness a core value. It doesn’t require monumental actions; sometimes, the smallest gestures can make the biggest difference. Let’s strive to create a world where kindness is the norm, not the exception. By doing this, we not only enrich the lives of those around us but also contribute to a more compassionate and connected world.

So, the next time you find yourself faced with the choice to act, remember the power of kindness. Be kind to humankind and watch as your actions create a ripple of positivity that transforms lives and communities.

By Kayla Myers, Family Peer Supporter

July 29, 2024

Receiving an autism diagnosis for your child can feel overwhelming, but it's also the beginning of a journey filled with hope, learning, and growth. As a parent, you may experience a whirlwind of emotions, from confusion and fear to relief and determination. Understanding how to navigate this new path will be filled with challenges but will eventually help you to provide the best support for your child and family. Here’s a compassionate guide to help you through this journey.

1. Allow Yourself to Process Your Emotions
It’s natural to feel a range of emotions upon receiving an autism diagnosis. It is important to give yourself permission to grieve the loss of the "expected" path for your child and then start to embrace this new reality. Talking to a counselor or joining a support group can be invaluable during this time.

2. Educate Yourself About Autism
Knowledge is power. Educate yourself about autism spectrum disorder (ASD) by reading reputable sources, attending workshops, speaking with professionals, and listening to others who have been diagnosed with ASD. Understanding the spectrum and recognizing that each child with autism is unique will help you better support your child.

3. Build a Support Network
Connecting with other parents who have navigated an autism diagnosis can provide emotional support and practical advice. Look for local or online support groups, forums, Family Peer Supporters, and social media communities. Networking with professionals like pediatricians, therapists, and special education teachers can also provide guidance and resources.

4. Create a Comprehensive Plan
Work with professionals to develop an individualized plan for your child. This might include therapies, educational strategies, and interventions tailored to your child's needs. Be proactive in setting up evaluations and seeking out specialists to address areas like speech, occupational, and behavioral therapy.

5. Advocate for Your Child
Be prepared to advocate for your child in various settings, including school, therapy sessions, and medical appointments. Understand your child’s rights and work with educators and therapists to ensure they receive the appropriate accommodation and support.

6. Focus on Strengths and Interests
While addressing challenges is important, don’t forget to celebrate and nurture your child’s strengths and interests. Encourage activities that they enjoy and excel in, as these can boost their self-esteem and provide meaningful outlets for expression.

7. Promote a Positive Home Environment
Create a supportive and understanding home environment. Use clear communication, establish routines, and offer plenty of positive reinforcement. This helps your child feel secure and can reduce anxiety and behavioral challenges.

8. Practice Self-Care
Caring for a child with autism can be demanding. Don’t neglect your well-being. Make time for activities that rejuvenate you, seek respite care when needed, and lean on your support network. Taking care of yourself ensures you’re better equipped to support your child.

9. Stay Flexible and Patient
The journey with autism is unique for each family. Be prepared for trial and error as you find what works best for your child. Flexibility and patience are crucial, as progress may come in small, incremental steps.

10. Celebrate Milestones
Acknowledge and celebrate your child’s achievements, no matter how small they may seem. Each milestone is a testament to their hard work and growth, and recognizing these moments reinforces positive behavior and motivation.

Navigating an autism diagnosis as a parent is a journey filled with challenges and triumphs. By educating yourself, building a support network, advocating for your child, and focusing on their strengths, you can provide a nurturing and empowering environment for your child. Remember, you are not alone on this path, and with patience, resilience, and love, you can help your child thrive.
To find more information about navigating a diagnosis as a parent or caregiver, check out https://mtpeernetwork.talentlms.com. Soon you will find many training’s built by parents and caregivers based on their own lived experiences.

(Written by Kayla Myers and ChatGPT was used to build an outline)

by Kayla Myers, Family Peer Supporter

April 23, 2024

Forgiveness should be a journey, not a destination. What I mean by that is, whether we need to forgive ourselves, friends/family, or people who have wronged us in our lives, that can be a very difficult task. That physical pain we felt, the emotional toll we went through, and the way our bodies grasped those feelings and held onto them tight, can feel like something you will truly never get over. The old saying goes, “Time heals everything.” Well, it sure doesn’t. The reason I say this is because over time, life keeps throwing us curveballs, or as experts, unlike myself like to call it, trauma. It starts stacking inside of us and piling up like deskwork in our brains. When this happens, we are walking through life with unresolved hurt inside of us, and then turn around and project it onto others. So, the very things that hurt us in the beginning, we are now doing those same things to the ones we love, friends, our children, etc.

Counseling, self-reflection, trauma work, EMDR, and a self-wellness plan have been the steps that made a difference for me. Looking back on my journey with therapy, it does make me cringe a little. I was the patient for a long time who talked about the same things repeatedly, but in different forms and with different examples. I attended talk therapy on and off for about five years. While I went every week, to every session, I felt like I was getting nowhere. I was frustrated with myself. I remember vividly thinking, “I am putting in the work on myself and I still feel so stuck and lost.” I had a shift in me one day and knew I needed to get real with myself and dive as deep as I could, so I would move into the brighter days of my life story.

Everyone’s journey is different, so keep this in mind. Any effort we put into improving our overall mental health is going to make you a more forgiving person and add wellness to your life. I have learned so much about myself and been able to forgive the hurt others have caused me, that I never thought I could. I found that where forgiveness was given, whether it’s internally or externally, that’s when my healing truly began. When you can feel yourself not reacting in self-destructive ways, as a response to the doings of others, you start to feel and see the differences in yourself, and the way others perceive you. While navigating the world of forgiveness, it is also important to offer yourself an immense amount of grace. I must constantly remind myself, “I am doing the best job I know how. And if I don’t get it right, I will learn from it and not hang onto it for dear life.” At the end of the day, we are only in charge of ourselves, right? No one else is going to come save us, I mean they can try, but we aren’t learning any lesson in being saved. Self-work comes within and owning the parts I played in the situations that hurt me deeply was my ticket to the start of freedom. I had to remember what my core values were before life happened.  I had to reflect and forgive myself for abandoning myself for so long.

When we start to process, reflect, self-reflect, and forgive, we set an example and all we can do is hope others see the positive changes. In return, your resilience will radiate onto others and hopefully, it can inspire others to do the same. Offering forgiveness after hurt is heroic, takes strength, and gives us our power back. Forgiveness should be a journey, and offering ourselves grace while doing so, that’s the destination.

by Kayla Myers, Family Peer Supporter

February 13, 2024

In this article, I am going to give you a different shift in mindset with the upcoming “Prayers for Autism” awareness day. While I am sure the intention with this day was all in good nature, I have some thoughts…….

When my child was diagnosed officially with Autism, we had already been on such a long journey to find answers. My little boy had hit all his milestones, was talking, and was a very different child from what he is now. Months after his second birthday, he quickly regressed. This meant all the words he had learned were gone, he wasn’t my calm and content child anymore, and I had to grieve a child that I still had breathing and walking around in front of me. He just changed, and I will not downplay how hard that was as a mom. Now knowing what a family peer supporter is, I was lucky to stumble across a few women who were helping with services and therapy for him, but they too had children with complex care needs. They helped me so much with my perspective on his diagnosis and helped me focus on the lesson in this drastic life change.

Whoever you believe in or if you don’t believe at all, I feel like that is every individual’s right and they should be able to believe in that without judgment from others. What I will say though, is I don’t love hearing “prayers” to diminish another person's experiences or to disregard people’s abilities as human beings. My son is a very capable human being who is affected by his Autism every day, but he doesn’t need to be prayed for because he is lacking in any way. He is smart, loving, kind, wild, and mysterious. He makes me proud because he is loud and proud of who he is and that is more than most can say for themselves.

My goal with this article is to bring awareness to how things are said and presented. If you believe in God and prayer is how you care for others, that is amazing. If you believe in the creator or spirit, that is beautiful. Caring for others through our beliefs is what makes us all special and unique in this thing we call life. I just hate to see it used in a hurtful way. Bryce doesn’t need to be prayed for because he is lacking or incomplete. He was created and designed to be just what he is. And this should be celebrated. This should be applauded. So, I believe if prayers are being sent to heaven for Bryce they should sound like, “I pray that Bryce remembers how amazing his brain works and remembers to continue to shine as bright as he wants to too.”

by Erin Faulkner, Family Peer Supporter

August 15, 2023

For this month’s topic, “Parenting in Recovery”, I once again had to turn to my internet friend, Google.  There are many kinds of recovery.  Recovery from substance abuse or other addictions.  Recovery from acute mental health events.  Recovery from physical injuries.  What does recovery mean for me?  Google defines recovery as “a return to a normal state of health, mind, or strength” and “the action or process of regaining possession or control of something stolen or lost.”  That last word, lost, is what I connected with.  For many parents of children with special health care needs or behavioral health challenges, the expectation of what we envisioned for our lives and for our children is gone or changed, in a sense – lost. 

My story is a little different than many families as I knew that the probability of my daughter have Stickler Syndrome was 50% because I have it, too.  So more than “lost," I often feel guilt.  Should I have done this, brought a child into this world that would have some suffering? 

Last week, I participated in a training by Brad Thompson, a clinical counselor, with years of experience in family peer support.  I learned about Stages of Adapting:  Survival, Searching, Settled In, and Separating.  These stages can be a framework for our journey to recovery as parents of children with special needs. 

In Survival, we may experience denial, anxiety or fear.  This is the part where our expectations and reality have gone in different directions.  These feelings stem from wondering if we are able to handle what has been handed to us and whether we have it in us to fight.  In addition to my daughter’s connective tissue disorder, she was also diagnosed at 5 years old with an Inflammatory Myofibroblastic Tumor on her bladder.  I can honestly say this was the scariest time of my life.  We didn’t know if she had cancer for almost a week.  For this, I was in “survival mode”.  I was scared for her, anxious about work and money.  A lot of emotions and thoughts went through me, many that those there to support me could not understand.  This anxiety pops up whenever she has some kind of an illness or physical problem. Most people might blow it off and not be worried, but her “UTI” turned out to be so much more that it affects me to this day.

We often Search for answers.  Is it my fault, the doctor’s, God’s?  What will other people think?  Why me?  This stage includes feeling such as guilt, shame, depression, anger.  This is the stage that will pop up from time to time, but less often as the years go by.  Usually, it pops up because of something she is experiencing:  pain, sadness, questioning.  Oftentimes, it is her that tells me not to feel guilty or sad. 

We finally move to acceptance and hope.  We have “Settled In” to our lives with new expectations and realities.  For me this is when action happens.  This is what I need to do to make sure that she gets everything she needs and can perform to her potential.  But acceptance is more than just about accepting what your child’s future is.  It is also accepting what your future will be.  A few months ago, in my blog, I talked about 3 questions I had learned from a Ted Talk.  I bring those up frequently with people because I think they can be arranged and fit most any situation. 

• What does great look like?
  • What is your new expectation? Be realistic but have hope.
• What do I know for sure?
  • Avoid travelling down the rabbit hole of “what ifs” or looking at the glass as half empty rather than just needing to be topped off
• What can I do to help?
  • What can you do to help your child in school, home, etc?
  • What can you do to take care of yourself? Don’t forget about you!

In doing this, we will then move into Separating.  You and your child are not one person.  You can’t care for yourself if you are only caring for your child.  This is where you become independent of one another.  My daughter is now 21 and in college.  I keep trying to hold on to her for as long and as much as possible.  She is very clearly telling me, “I love you mom, but back off!”  This has been happening for years, but now she is physically gone, so it is very real.  I have had to really discover who I am without her.  This is not special to parents of children with special needs, but I do believe that it is different.

As a parent of a child with special health care needs, I continue to process through these stages.  You may not reach the last stage and “graduate” and move on.  You slide back to a previous stage because something else has happened in their life or your life.  That is okay!  Process those feelings and keep moving forward. 

by Nikki Russell, Recovery Coach

June 27, 2023

Radical acceptance is like waking up in the middle of a dream and clearly looking at life for the first time. The reality of what I had created while I was asleep in my addiction was startling. The truth that I was unwilling to look at had built momentum, and the consequences of those choices were overwhelming. Recovery demands honesty; every courageous action forward balances authenticity and vulnerability. It meant I could no longer play the victim of life; I needed to be responsible for the life I could create with a willingness to work hard to heal and forgive.

Accepting the reality of the world I had developed based on projections from a painful childhood meant removing some people, places, and things from my life that were a detriment to my recovery. I felt guilty for convincing people that I was something I was not, but following my heart meant recognizing where I got the ball rolling. I knew I had placed the sad things inside me onto the world around me. When I was willing to take accountability for the life I created, I could finally experience serenity. I learned that reality is truth and that just because I do not like it does not justify ambivalence.

I realized the life that was waiting for me was something I needed to build, and when I became willing to speak and live my truth, I began to pave the road home to my heart. Looking to the outside world for validation was all I ever knew; I could not trust my internal guidance system because I had been manipulating the world to my advantage. The shadow side of my personality was extremely loud, rejecting my new life, ordering the conditioned ways because they were safe. Creating a life that reflected purpose meant assembling a life based on the conviction that truth does not always reveal itself in the most beautiful ways, but it always points me in the right direction if I am willing to face it.

Radical acceptance is a daily practice and a direct pointer to the truth that compels me to face reality. It can feel like moving into the unknown because, without an agenda to achieve external validation, I get to live in the moment, trusting life. Embracing the light and shadow aspects of myself allows me to commit to healing that involves introspection and action. My addiction, the shadow aspect of myself, ruled my life without my permission and created chaos, but it protected me from my childhood. Although that protection is long past due, I honor and respect it because it kept me alive. Although it remains with me today, I can see it for what it is, and it rarely influences my behavior but allows me to understand my past and have compassion for myself and others. Recovery is radical acceptance from a disease that tried to teach me survival in a scary world. Although a proper perspective, it offers a defensive protection that steals joy, always on the lookout for deception. Today truth rules my world and gives empowerment to pursue happiness with a broad spectrum of empathy and a radical amount of acceptance.

by Erin Faulkner, Family Peer Supporter

June 13, 2023

Here at MPN, all of the Peer Supporters, both in the Family Division and Recovery Division, are tasked with writing an article, or a blog, about the month’s topic.  This month’s topic is Radical Acceptance.  I had never heard this term before.  Many of you may be in the same situation.  It is to you that I share what I learned.

I started my education with a Google search.  The first website that came up was verywellmind.com that defined Radical Acceptance as “the ability to accept situations that are outside of your control without judging them, which in turn reduces the suffering that is caused by them.  Radical acceptance is based on the notion that suffering comes not directly from pain, but from one’s attachment to the pain.“  As I read those words, I immediately thought about a video that was just shared with us at a staff education meeting.  We watched a Ted Talk by Cy Wakeman titled “Ditch the Drama – How to Live Happy in a Messy World”.  Ms. Wakeman asks, “How can you just flip your own toggle switch from suffering to a better view of the world?”  Her answer?  Self-reflection involving three questions.

1. What do I know for sure?
2. What can I do to help?
3. What would great look like?

Originally, I watched this video through the eyes of an employee contemplating the drama in my life.  As I thought about the definition of radical acceptance and the connection to this video regarding suffering and the need to separate myself from the pain, I realized that these 3 questions could be a guide to radical acceptance.  When we are suffering emotionally, from a new diagnosis, from the uncertainty of our child’s future or from the weariness of each day caring for our families, we can ask ourselves these same questions.  Sometimes, we get wrapped up in the “what ifs” and move too far from the “what is”.  What do I know for sure?  Once we answer that question, it may be easier to answer the next.  What can I do to help?  Some answers might be to talk to someone (peer support), get educated (find resources), take care of yourself in all dimensions.  And with that follows the last question.  What would great look like?  This is a “what if” question but one that we often don’t ask ourselves as we typically hypothesize the worst outcomes and not the best.  We can’t always change the outcome for our children, but we may be able to change our feelings, our lives, our outcomes as individuals and as families.

by Beth Ayers, Family Peer Support Lead

June 6, 2023

What is radical acceptance? In an article on Psychology Today (psychologytoday.com) titled "The Healing Power of Radical Acceptance,” author Michelle Maidenberg Ph.D., MPH, LCSW-R, CGP writes, “Radical acceptance is letting go of the need to control, judge, and wish things were different than they are.” I also like this definition by the creator of dialectical behavior therapy, Marsha Linehan, “Radical acceptance rests on letting go of the illusion of control, and a willingness to notice and accept things as they are right now without judging.”

For most of my life, I avoided reality. At the time, I didn’t know this was what I was doing. I would have said I was helping or fixing or taking charge or being strong or managing. Sean Fargo wrote an article on mindfulnessexercises.com titled “Radical Acceptance: What It Is and What It Isn’t.” In it he quotes Tara Brach, Ph.D., meditation teacher, psychologist, and author in saying, “Managing is a way of saying no to what’s happening right now. We attempt to busy ourselves with the denial of reality and attempt to manage our circumstances and the behavior of others because we’re afraid.” I felt that I was in control. I thought my tactics would move me forward, but, in fact, they did not. They kept me stuck. You could tell I was stuck by my often-used phrases of “This isn’t fair!” or “Why did this happen to me?” I constantly wished things were different, that I was a different person with a different life. My thoughts and reflections about life and myself included words such as “should”, “ought”, and “must.” I measured myself against the illusion of perfection. I thought that if I was perfect, life would be perfect. I was sure that if I did the “right” things then I would be okay. I thought pain could be avoided by controlling life. I have come to learn that life is messy. Why didn’t someone tell me that sooner!? When I couldn’t avoid the pain or disappointment or embarrassment, I just denied my feelings. In the same article on Psychology Today that I previously mentioned, Michelle Maidenberg describes my strategy perfectly. She writes, “When a reality is painful, it’s natural to try to push it away, fight against it, or numb ourselves through unhealthy coping mechanisms (eg. drinking, overeating, engaging in unhealthy relationships). These strategies might cause a temporary sense of ‘relief.’ However, they bury the underlying issue and likely cause you to feel even worse in the long term.” She goes on to say, “Resisting reality delays healing and adds suffering to your pain.” By not accepting my reality (or I’ve heard it said, “not accepting life on life’s terms”) and ignoring my feelings, I could pretend, for the moment, everything was okay. But these moments became harder and harder to hold on to. The ability to control life turned out to be an illusion that kept me stuck in suffering and unable to heal.

By focusing on what I couldn’t change, I had given up my control over the things I could change. The Serenity Prayer has helped ground me in reality and has allowed me to distinguish between what I can and cannot control: “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” I began to see how much I dwelt on the past: thinking of how I could have done things differently, mourning the causes and circumstances, wishing life was different, questioning the why, ruminating on feelings of regret, guilt, and shame. Accepting what I cannot change allows me to make choices about what I can change and enables me to move forward. A perfect example is rain. The reality is that it is raining outside. If I ignore my reality, I will walk outside, get wet, and then probably be upset for being wet. By ignoring my reality, I didn’t give myself choices other than to get wet. And of course, it would not be my fault because, after all, I did not make it rain. If instead I accept that it is raining outside, now I can choose whether to take an umbrella or wear a raincoat or do nothing and get wet. I do not have control over the rain, but I do have control over my choices. I can choose to wear a raincoat and not get wet. Accepting that it was raining gave me control over whether or not to get wet. Michelle Maidenberg puts it this way in the Psychology Today, “Radical acceptance helps you to shift focus from unproductive ruminating to thinking about what a better use of your time and energy might be.”

The other thing I was giving up by not accepting reality was the ability to be present. In his same article on mindfulnessexercises.com, Sean Fargo writes, “Radical acceptance releases us from the compulsion to manage, fix, and control. Acceptance frees us to be present instead.” He also writes, “Present and firmly rooted in reality, we change our works not by fighting against what is or attempting to manage, but by connecting to others from the spaciousness of authenticity and total acceptance.” As a Family Peer Supporter, working with families is an exercise in acceptance. I cannot fix their situation or take charge of their family. I can share my lived experience of pain and imperfection, and also joy and hope. I can be present and listen. I read somewhere that if I can be present with my own pain, I am then able to be present with others in theirs. Being present, feeling my feelings without judgement, practicing radical acceptance. This is where I find joy, hope, compassion, rest, and contentment. Tara Brach so beautifully sums it up, “On this sacred path of radical acceptance, rather than striving for perfection, we discover how to love ourselves into wholeness.”