š¬ Caregivers Who Are Parents: "Ask Us Anything"
Exchanging reflections; strengthening our community network.
Hello, dear Friends, Iām Victoria. I created Carer Mentor to offer heartfelt empathy for Caregivers. Itās a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ā¤ļø
You can read about why I started Carer Mentor: Empathy and Inspiration here. I recommend using the quick-start navigation guide to explore the website.
Caregivers who are parents.
At its core, Carer Mentor offers heartfelt empathy for Caregivers. The anthologies help us recognise the very human paradox of caregiving: the individuality of our personal situation and, at the same time, our universal common humanity. On the one hand, our individual circumstances, struggles, cultures, values, and backgrounds make our experiences unique. On the other hand, weāre united by universal life experiences: birth, death, emotions, and vulnerabilities; our humanity.
Another dimension we donāt often discuss is the relational dynamics. I focus on eldercare/caring for my parents, but many friends care for their spouse, child, or sibling. Plus, caregiving stretches beyond blood ties these days. Various forms of kinship care, care communities, or caring amongst chosen family are being formed.
Caregiving for someone who has health issues or a disability is different when theyāre your parent or older, compared to when itās your child.
Iām not familiar with caregiving for a child, but Iād like to hold more space for those experiences as well as other types of caregiving. So, Iām introducing a new Carer Mentor collaboration project to facilitate more community connections and discussion.
Meet caregivers who share how theyāre caring for a child with special needs, a disability, a rare disease, autism, cancer or another health condition.
āCaregiving As A Parentā discussions will be on the first Friday of every month.
Itās in the form of a discussion thread for easy reference.
In the comments discussion āAsk The Team Anythingā:
Victoriaās question to everyone:
āWhat do people get wrong about your caregiving as a parent?ā
Share and reply to each otherās comments/questions
Feel free to explore ways to share, connect, and collaborate together.
Letās remember that what works for one person may not work for someone else. Letās lead with empathy.
The next āCaregiving As A Parentā discussion will be on Friday, May 1st.
It will be hosted by Maria Messer at her āHolding Bothā publication.
Read more about the Team
As the first discussion, Iām pleased to introduce you to our 12 team members. Enjoy reading more about the team.
1 Chris B. Writes & Bray Bray - United States
Hi, Iām Chris B., and I care for my son Bray Bray. We live in Long Island, NY, along with my wife Melanie. Bray Bray was born with a rare genetic disorder called GNAI1, which has caused many development and medical issues ā global delays, legal blindness, hypotonic cerebral palsy, obstructive sleep apnea, and seizures. Bray Bray cannot talk and cannot walk, but his smile lights up the world and we strive to give him all of lifeās adventures, even if itās in his wheelchair.
My Substack publication is Chris B. Writes. I write a mix of poems and posts about caregiving for Bray Bray as I share my raw and honest perspective as his dad and witness to his warrior journey. I tend to say more with less, and poetry is my usual outlet during my most vulnerable, emotionally charged moments.
When I am not writing or engaging with my fellow Substackers, I work in public relations and content writing/editing. I also love playing pickleball and beach volleyball, and am blessed enough to be able to do so as a physical outlet and form of exercise.
Key Takeaway: Iāve always prided myself on hustling and putting in the effort. What Bray Bray has instilled in me goes even one step further. Itās not just about the grind; itās about not letting those hardest moments change the core of who you are.
Read some of Chrisās work:
The Hours, A Caregiverās Poem & Songā¦
2 Amy J Brown - United States
Hi, Iām Amy J Brown. Iām a writer, mentor, and spiritual director living in Michigan. Iāve spent over 33 years as a mom of six, 25 of those parenting children with invisible disabilities. Three of my kids are adopted, and I know firsthand how lonely, exhausting, and overwhelming it can be to love a child through trauma, mental health struggles, and attachment issues. Iāve lived it. Iām still living it.
As a spiritual director with an MA in Spiritual Formation and Leadership, and author of The Other Side of Special: Navigating the Messy, Emotional, and Joy-Filled Life of a Special Needs Mom, I believe that caregivers need more than advice ā you need a safe, shame-free space to be truly heard. Whether youāre parenting a child with special needs, caring for aging parents, or simply running on empty, you belong here. You can find me at; More than a Caregiver: where I write about life giving practices for the overwhelmed caregiver.
I believe your story matters. When we share honestly, we learn from each other, gather strength, and remember we are not alone. My greatest privilege is sitting with women in the hard places and reminding them there is still peace and hope to be found.
You donāt have to keep doing this alone. Iām so glad youāre here. If you are new to my work, start with these two essays. Building a Ramp: Parenting Kids with Invisible Disabilities and Itās Not Supposed to be This Way: Learning to Stand in the Space of What is and What We Want it to Be.
3 Sara Clime - United States
Iām Sara Clime. Iām based in a small Midwestern US city. No, thereās not much here. Yes, Iāve made peace with that.
Iām a caregiver, systems nerd, and a firm believer that a good organizational system can genuinely change your life. I write Sanity & Systems because caregiving is too heavy to carry alone, and we all need people who know exactly how chaotic, beautiful, and absolutely unhinged this life can be. The systems keep me sane. Ish.
My life took a major turn in 2012, when my youngest son, TJ, was diagnosed at the age of 8 with Duchenne muscular dystrophy (DMD). DMD is a progressive, degenerative, and terminal condition. Overnight, I became a disability parent, medical director, advocate, and protector, all while still trying to remain myself. What I learned, often the hard way, is that a diagnosis can change everything without erasing who you are. But it will demand more from you than most people ever see.
So, I built systems, binders, spreadsheets, and tracking sheets, not because I had it together, but because I absolutely did not. Those systems became the Care Support Systemā¢, which I now share with other caregivers. Sanity & Systems is the human side of all of that. Real talk, practical tools, and the steady reminder that you are still a whole person, not just a caregiver.
Beyond caregiving, Iām a virtual assistant and consultant, a co-author of The Other Side of Special, a former podcast co-host, and a public speaker. Iāve been married to my husband Craig for 28+ years. Together, weāve raised two amazing young men.
Something I need you to hear: Youāre allowed to hold grief and gratitude at the same time. The jealousy, the anger, the days you resent the life you didnāt choose: those donāt make you a bad caregiver. They make you human. Youāre not behind. Youāre not broken. Youāre not failing.
If youāre new to my writing, start with these two essays. Theyāll give you a great sense of what Sanity & Systems is about: How I Learned to Build Systems When Life Fell Apart, and Itās Okay To Be Okay.
4 Anna De La Cruz - United States
Anna De La Cruz is a mom of three, daughter to parents with dementia, and sister and guardian to a brother with Down Syndrome. She has spent her career working in philanthropy, social impact and gender equity worldwide, with a focus on Latin America. Her personal experiences with caregiving over the last decade have fueled her passion to build community and awareness around the needs of caregivers, and shed light on solutions to the care crisis in the US and globally. Annaās publication is āGen Xandwichā
Read more about Anna and her brother Leif here:
The Limits of Being Seen. What my brother with Down syndrome taught me about true representation
When the Waves Keep Coming: Trust yourself
5 Donna Giles - United Kingdom
Iām Donna, I am a mother and a wife, a daughter, a sister and a friend. I write āLife and Other Storiesā
I was born with a complex congenital cardiac condition ā tricuspid atresia, pulmonary atresia, TGA and ASD. This means I have a right-sided single ventricle condition. I have had open heart surgery on 2 occasions, and several scary momentsā¦. but Iām still hereā¦ at 58 I am grateful for that fact.
My son, Nathan, and my daughter, Cerys, both have Cerebral Palsy and are full-time wheelchair users. Nathan has a degree in politics and sociology and is currently working with local colleges and universities to train social workers. Cerys is currently at college and is creative, running her own little business selling cards to friends and family. We are incredibly lucky to have a team of PAs and Carers to assist them in living well the way they want.
This creates a very busy household, especially if my husband is also home. At times, there can be the 4 of us, plus a PA for Nathan, and 2 carers for Cerys.
Read some of Donna and her family: A Day in MY Life, otherwise known as āWelcome to Chaos!ā
6 Haley Haddow - United Kingdom
Hi Iām Haley based in London, UK and Iām a mother of two. My youngest son Max (not his real name) is autistic and non-verbal.
In my early twenties, I followed my passion for adventure and travel by living as an expat in the United Arab Emirates. Later, returning married and expecting my first child, I established a glass art studio. I then relocated back to the UK when Max was diagnosed with autism and am now his full-time carer, putting my career as a glass artist on hold.
Since his diagnosis at the age of three, advocacy has become a defining part of my life.
Special Educational Needs (SEN) parents are often thrust into situations and circumstances that are beyond their control. The early years can feel isolating and overwhelming, but they can also be a catalyst for growth, resilience, and connection. My lived experience allows me to understand this deeply. While people often see strength in caregivers, they rarely see the interior world. Through my publication āThousands of Usā I share my own and othersā stories to illuminate what so often goes unseen.
Read more about Haley and Max:
āThe Other Side of Caring āYou failed him. And youāve failed us.
āThe Sunflower Lanyard Max had been seen. He had been capable. He had been useful and ...just simply included.ā
7 Bud Hager - United States
I go by my second middle name (I have three), Bud, because itās easier to remember and baristas never misspell it. Deciding that I wasnāt a fan of having money or a solid sense of self, I became an academic, eventually earning a graduate degree in clinical psychology and a licensure as a psychotherapist. After working with people deemed incompetent to stand trial by reason of insanity, typically of a violent psychotic nature, managing a community mental health clinic and training new therapists, I felt ready to become a father. I was woefully unprepared and remain a poor judge of my abilities.
Along with my wife, I am a caregiver for our daughter, Emma, who has pachygyria, a rare neurological disorder. I believe in taking an active approach to advocating for my child and others like her. To this end, I sit on various advisory councils at Radyās Childrenās Health (RCH), volunteer on consulting and directing boards for various non-profit centers, and lend my writing skills where I can. Experiencing a lack of support for parents of medically complex children, I founded a support group through RCH focusing on parent-to-parent interaction.
In addition to being the primary caregiver for my daughter, I am a psychology professor, have a small private psychotherapy practice (that is mostly filled by pro bono work for parents of newly diagnosed children), I advocate endlessly for my daughter, and am hopelessly devoted to my wife, both of whom I believe quite definitely hold the secrets to the universe.
Sometimes I write things at Our Little Kartoffel.
Read more here:
Our Little Kartoffel Words about fatherhood, grief, wonder, and the work of paying attention.
8 Cooky Howitt - United Kingdom
Hello to you all! Delighted to be here. My name is Cooky Howitt, I Iive in Devon, UK with my husband and two young adult children. Our youngest, Olivia (not her real name) is 19 and has Downās Syndrome, ASD with a PDA profile, and ADHD. She also has some accompanying physical disabilities. She is officially SLD (severely learning disabled), non-verbal, still in nappies, and needs 1:1 support 24/7. Looking after her is pretty full-on but very rewarding: sheās a huge personality and full of silliness.
I donāt think that my family is particularly special or different, and it certainly never occurred to me write about us in any way. But then, for several months encompassing the whole of 2025, Olivia developed a severe but mysterious gynae-related condition, which quite simply made our lives a living hell. She changed personality, becoming violent for 3 weeks out of every month, and almost totally stopped sleeping. We called 999 5 times, 3 of those involving the police, we rang 111 23 times, and I made well over 150 phone calls in total to health professionals during the year.
Desperate for an outlet, and already an avid Substack reader, I started writing Extreme Parenting. I couldnāt believe what was happening to us, and why nothing was really being done to help. Iām a compulsive communicator and it all just came pouring out. Eventually, due to us constantly agitating on her behalf, Olivia was admitted to hospital, scanned and they discovered that she needed immediate emergency surgery. She has now made an almost full recovery, although it was not straightforward. But here I am still writing! Not as much as I did, for sure, but itās so cathartic.
Advice for other carers? Difficult as we all have to find our own coping mechanisms. Two things are probably universal though:
1. Community: my kickass SEND mum friends in particular, alongside close friends and family who really get it. They all felt helpless when things were bad, but they kept checking in which helped counter the isolation that extreme caring brings.
2. Fun: both with your child and without them. The beach and stories with Olivia. And without her, disco dancing and cocktails have definitely got me through the last 20 years with a smile on my face.
But you do you!
When Iām not a carer, Iām a careers coach, a true vocation which I absolutely love. I had to put my new company on hold for most of 2025 because of Oliviaās health, but am back into it now which is a wonderful feeling.
Caring is actually the last thing I want to read a book about - I have quite enough of it every day! Having said that, I do enjoy articles, especially other carersā Substacks. I am a huge fan of Katy Stylesā organisation We Care, which has done so much for us all as a family. She sends out an excellent weekly newsletter round-up which is a life-saver, and hereās the instagram.
It was two guests on that podcast that inspired me to start Extreme Parenting, and Katy then read out my first ever Substack post at the Lib Dem conference last year, which was such an honour.
Olivia watches Finding Nemo at least once every day, so Iām going to leave you with Doryās wise advice: āJust keep swimmingā. Itās all we can do.
Read more here
Highly extreme parenting PDA and Norovirus: a delightful partnership
9 mary beth kaplanšŖ¶ - United States
Iām Mary Beth, a mama to my three beautiful kids, and wife to my best friend. Poet-in-progress, writer, yoga teacher-in-training and forever student of life. I live in Northern Indiana in the U.S.
Mantras and Coffee, my publication on Substack, began as a seed of an idea a few years ago. As I sat in my morning meditationā¦mind wanderingā¦ I knew I needed to share my findings, in the hopes of creating an easier path for others to get to that sweet muted place. That tender heart space I came to rely upon so often, as well as, to solidify what I learn, too, for a deeper, more connected understanding. A place to stop by when things seem overwhelming and chaotic. A place to take a moment for the self, to take a breath, a pause, and to remember what itās like to be alive. Perhaps it may even act as a reminder that we all actually do have souls dwelling deep within all of us. We all need to catch our breaths and reset, from time to time. My hope is you feel better, calmer, more centered and more in rhythm with your real self after visiting.
For me, guiding, helping and loving my family is my top priority. The last few years have been especially challenging in that we have had to traverse up the mountain of childhood cancer.
Our eldest son, Jonah, was diagnosed in August of 2022 with HR B-Cell Acute Lymphoblastic Leukemia. He is now fully recovered. It was a very intensive, full-time job. I was tethered to my boy and ready for anything throughout the entire process of his active treatment.
Writing has become a close friend, and a healing way for me to release all the things, over these last few years.
The written word, mantras, along with prayer, and poetry were key in helping me deal with the extreme emotional ups and downs of our sonās recovery from cancer. Even now, in post treatment life. These modalities have helped to keep me steady during some of the roughest periods. The best gift in finding these coping methods, has been the healing part. The second best, has been being able to do it, from anywhere, while being the caretaker, my son (and his siblings) deserve and need daily. Iām beyond grateful. Even in all lifeās glory and in the most tragic moments, we always learn something. Day after day, constantly being inundated with EVERYTHING, we all need a little help sometimes. We are all in this together. Even caregivers need caregivers.
Something to begin with, if you are new to my workā¦
10 Serena Menken - United States
Hi, Iām Serena Menken. Iām a writer, non-profit leader, and mentor. My husband and I live in the Midwest with our three teenagers and a rambunctious dog. Five years ago, our world was turned upside down when our oldest daughter, Ellie, hit a crisis point with her mental health. Somehow our beautiful, talented, creative daughter was so depressed that she wanted to end her life. Her anxiety kept her paralyzed. Her eating disorder led to deception and self-destruction. Even when we got her into treatment, she spiraled into deeper darkness. It was an excruciating year of rushing to find the right support while waiting in despair.
Five years later, our daughter has made a solid recovery and sheās thriving in college. Over the past five years, weāve also learned that our daughter is on the autism spectrum; both our daughters have ADHD. Now my mission is to support parents who feel as exhausted, lonely and hopeless as we did. In my Substack, called Evidence of Grace, I write about parenting teens with mental health struggles and/or neurodiversity from the lens of faith, authenticity and hope. Whoever you are and whatever your kid is facing, you belong here. Iāll share my stories and Iād love to hear yours.
When Iām not writing, I love an extended bike ride through a forest preserve, a leisurely cup of tea with a friend, or a quiet moment to journal and pray.
If youāre new to my work, start with these essays: The Grief No One Tells You About and Hidden Strength.
11 Holding Both - Maria Messer ā United States
Iām the writer behind Holding Both, a space for the tender mess and quiet magic of living a life that didnāt unfold the way you planned. Through deeply personal essays, I explore what it means to hold grief and joy at the same time, to parent in complexity, and to lead with humanity inside uncertainty.
Iām a mother through adoption to children whose needs have reshaped everything, and a Special Education leader who understands disability from both sidesāprofessionally and painfully personally. My life sits at the intersection of caregiving, systems, mental health, and fierce, complicated love.
I write Holding Both because there arenāt enough places that tell the truth without trying to fix it. This work is about making meaning, finding steadiness, and reminding others they are not aloneāeven when the path is unclear.
If youāre new to my work, here are a few pieces that reflect this journey:
The Passenger Seat - A moment that changed everything, and the quiet, terrifying realization that I was no longer in control of where our life was headed. This essay explores what it means to keep showing up when youāre no longer the one driving.
He Came Through the Doors - The day my son entered residential careāholding both the heartbreak of separation and the unexpected relief of safety. A story about love, survival, and the impossible truths caregivers carry at the same time.
Before There Was Language - A reflection on the earliest days of my sonās medical and developmental journeyābefore diagnoses, before language, before understanding. This essay traces the moment everything began to shift, and the one thing that never did: love.
12 Denise Servais - United States
Hi, Iām Denise Servais from St. Paul, Minnesota. I write Ground Level on Substack, where I share about resilience, caregiving, grief, and love. This space is for anyone learning to live inside a life they didnāt plan for.
Iām a mom to three daughters, including my 21-year-old daughter, Maya, who has Prader-Willi Syndrome. My husband, Jeff, and I have been married for 30 years.
My writing lives in the space most people donāt talk about honestlyāthe mental load, the constant recalculating, the quiet grief, the unexpected humor, and the kind of love that doesnāt fit neatly into milestones or progress charts. I write essays in the hope that other caregivers feel a little less alone, and a little more understood.
Outside of caregiving, Iām a speech-language pathologist working in schools with students from elementary through high school. Iāve spent over 25 years in this field, but the most meaningful lessons about communication didnāt come from textbooks, they came from living it at home.
One thing Iād share with another caregiver: itās easy to measure yourself against the wrong things. The world will hand you a checklist, but you get to decide what actually counts.
If youāre new to my work, these two pieces give a good sense of what I write about:
The System Is Working, Just Not For Us
The Compliment I Donāt Correct
Please remember to āā¤ļøā LIKE the article to guide others to these resources.
āAsk The Team Anythingā
Read a profile, ask a question
Share and reply to each otherās comments/questions
Feel free to explore ways to share, connect, and collaborate together.
āWhat do people get wrong about your caregiving as a parent?ā
Wow, I'm late to the party but blown away by this response!
I love all of the answers to Victoria's question about what people get wrong and I can relate to many of them. I always feel that when people meet me they see a "normal" mom of three, without knowing the slightest about all the additional layers of caregiving going on behind the scenes, but which define my life right now: managing both my parents' dementia diagnoses and various moves and health issues, and taking over guardianship for my disabled brother.
I share the discomfort others have expressed with the "I can't imagine" or the "you're a superhero" comments: because neither is true. These responses, while well-meaning, are also somehow othering. As if I'm in a different category, not what I actually am - just a normal human who has no other choice but to carry the care of so many people I love on my shoulders. And its damn hard! Sometimes we need you to just imagine with us, because that's the root of empathy.