Beyond Caregiver Burnout: Reclaiming Agency as a Special Needs Mom

Most parents enter motherhood with an imagined version of what life will look like. They anticipate sleepless nights, diaper changes, and the usual challenges of raising a child. They may not anticipate years of medical appointments, developmental evaluations, sensory challenges, emotional dysregulation, or the possibility that their child will require lifelong support.

For Susanna Peace Lovell, motherhood unfolded very differently from what she had envisioned.

Susanna is a life coach, author, speaker, advocate, Reiki practitioner, special needs parent, and co-host of the Brave Together podcast. Her daughter, Arizona, now 20, has autism spectrum disorder, ADHD, generalized anxiety disorder, and significant food allergies. During our conversation on the Trust Me Mom podcast, Susanna spoke candidly about caregiver exhaustion, the complicated emotions many mothers are afraid to admit, and the small but meaningful choices that can help parents reclaim parts of themselves.

When Motherhood Changes You Overnight

Susanna grew up surrounded by children. She had many siblings, regularly babysat, and felt naturally comfortable caring for babies and young people. She expected motherhood to be demanding, but she also believed her experience with children had prepared her. Then her daughter Arizona was born. “I had this different idea of what motherhood was going to look like for me,” Susanna recalled. “I knew that it would be different and challenging, but I also thought I had it figured out because I was so good with kids.”

What she could not anticipate were the sleepless nights, hormonal changes, and the enormous weight of becoming fully responsible for another human being. When Arizona was about three months old, Susanna experienced severe postpartum anxiety and depression. At the same time, her baby was extremely uncomfortable. Arizona had colic, eczema, rashes, and an extensive list of food allergies that took approximately a year to fully identify. Susanna stopped breastfeeding because her daughter appeared to react to nearly everything she consumed.

As the family focused on Arizona’s allergies, other developmental differences began to emerge. Arizona walked at around 12 months but had never crawled and struggled to pull herself up after falling. By age two, she was using some words, but Susanna sensed that something else was happening. A family member who was an educator gently suggested that Arizona was not simply being stubborn. Susanna brought her concerns to their pediatrician, but it took repeated conversations and considerable persistence to receive a referral to a developmental specialist.

Arizona was initially given several different labels, including sensory processing difficulties, apraxia, executive-function challenges, and auditory processing disorder. At approximately two and a half years old, she was diagnosed with autism spectrum disorder. ADHD and generalized anxiety disorder diagnoses followed later. “There was that gut feeling as a mom,” Susanna said. “There is something going on, but I just don’t know what.”

“If you are not living this life, you do not understand this life”

Parents of children with disabilities frequently carry responsibilities that remain invisible to the outside world. Friends and family members may witness occasional moments, but they rarely see the full reality unfolding behind closed doors, day after day and night after night.

After Susanna and Arizona’s father divorced, the family decided that Arizona would live with Susanna full time. Arizona needed consistency, structure, close attention, and fresh homemade food that accommodated her allergies. Moving between two households would have been highly disruptive. Susanna had to build her life around her daughter’s needs. Twenty years later, she describes herself as having been “on call” for the entirety of her motherhood journey. “If you are not living this life, then you do not understand this life,” she said.

For some parents, special needs caregiving can feel like a prison without a known release date. That comparison is not intended to minimize the experiences of incarcerated people. Rather, it describes the loss of freedom, uncertainty, and relentless responsibility some caregivers experience. Many parents do not know whether their children will eventually live independently. They may love their children fiercely while simultaneously feeling trapped, resentful, frightened, or desperate to escape. These conflicting emotions can coexist.

During the depths of postpartum depression, Susanna sometimes fantasized about finding her passport, boarding a plane, and disappearing. She did not act on those thoughts, but she allowed herself to acknowledge them instead of adding another layer of shame. “I felt bad and I felt guilty, but I was like, no, I need to allow myself to feel these feelings,” she shared. Recognizing painful emotions does not mean that a parent does not love their child. It means that the parent is a human being carrying more than one person was designed to carry alone.

Reclaiming Agency Within Difficult Circumstances

Some aspects of special needs parenting cannot be changed. A diagnosis may be permanent. A child may always require significant support. The caregiver may have limited financial resources, little family nearby, or no realistic opportunity to step away. 

Susanna does not pretend that positive thinking can remove these realities. Instead, she returns to one powerful word: agency. “We still have some agency, even with the circumstances,” she explained. “This is my life. Here are the pieces of the puzzle that I get to work with. What are the values that are important to me?” Agency does not mean having complete control. It means identifying the choices that remain available within circumstances you did not choose.

For Susanna, those choices include making room for meaningful friendships, delicious food, personal adventures, time with her partner, and experiences that have nothing to do with motherhood. They also include asking how she and Arizona can thrive both together and as individuals. That question may not produce a dramatic or immediate transformation. It can, however, shift a parent’s attention from everything that has been lost to the small areas where choice is still possible.

---

​In this episode of the Trust Me Mom podcast (Season 2, episode 46 available on Apple Podcasts and Spotify), Susanna Peace Lovell, author, speaker, life coach, Reiki practitioner, co-host of the Brave Together podcast, and mother of a 20-year-old daughter diagnosed with autism, ADHD, anxiety, and severe food allergies, shares her journey through postpartum anxiety and depression, her daughter Arizona’s early diagnoses, divorce, caregiving without traditional respite, and the difficult emotions many mothers are afraid to admit experiencing. She explains why caregiver depletion is real, how self-compassion can soften guilt and resentment, and why even mothers facing tremendous limitations still have some agency.

---

---

​Self-Compassion Comes Before Grace
​
Caregivers often feel pressure to handle impossible circumstances with endless patience and grace. When they become angry, resentful, or overwhelmed, they may interpret those emotions as personal failures. Susanna believes that grace begins with compassion for the caregiver. “The most important way to experience grace is to have so much compassion for yourself, Mom,” she said. “It’s so understandable why you find this to be so challenging.”

Caring for a child with complex needs can require constant physical, emotional, and cognitive labor. A parent may need to prepare specialized meals, coordinate therapies, monitor medical symptoms, anticipate sensory triggers, manage emotional outbursts, and remain alert through the night. Unlike a demanding job or an intense period of study, this work does not necessarily end on Friday afternoon. There may be no weekend available for recovery. “You can pull an all-nighter, do the test, and then rest for three days,” Susanna explained. “That’s not the case” for many caregivers. When the work never truly stops, exhaustion is not evidence that a parent is failing. It is an understandable response to prolonged stress without adequate recovery.

Forget Filling Your Cup. Find Five Minutes.

Conventional self-care advice often assumes that a depleted caregiver has enough time, money, support, and freedom to take a substantial break. For a parent whose child is medically fragile, experiencing a seizure, or unable to be left unattended, even going to the bathroom alone may be impossible.

Susanna does not offer elaborate wellness routines as the solution. She encourages caregivers to intentionally seek the smallest available moments of respite. “How can I even find five minutes of respite?” she asks. “You have to seek it out. You have to make it a non-negotiable priority in your day.” Sometimes that means leaving the laundry untouched. It may mean not answering a well-intentioned phone call, releasing a nonessential obligation, listening to a one-minute meditation, or writing a few unfiltered sentences in a journal. “If you really think about all of the ‘shoulds’ on your plate, I bet most of them, or at least half of them, are not really a should,” Susanna said.

On the hardest days, parents may not be able to think beyond the next minute. Susanna remembers looking at the clock while Arizona screamed and realizing it was only 6:07 in the morning. The day ahead felt impossible. In those moments, the goal does not need to be thriving. The goal may simply be getting through the next minute safely.

Finding Connection Beneath the Caregiving

The endless tasks surrounding a child’s needs can sometimes obscure the relationship itself. Parents become focused on appointments, meals, medication, therapies, behaviors, school concerns, and daily routines. They spend so much time doing things for their children that they have little capacity left to simply be with them.

Susanna sometimes lies beside Arizona or sits near her without trying to fix anything. Eye contact has been difficult for Arizona, so Susanna may quietly wait for one brief moment of connection. “I’m here. You’re here. We’re here together,” she said. That pause does not eliminate the challenges, but it can restore a sense of purpose and connection. Beneath the responsibilities is a relationship between two people who are learning how to move through life together.

Using Multiple Paths Toward Healing

Susanna’s approach to well-being incorporates both conventional medicine and complementary practices. Western medicine and medication were vital during her experience with postpartum anxiety and depression. She has also explored acupuncture, journaling, chiropractic care, and Reiki.

After experiencing Reiki herself, she trained first for personal healing and later became a practitioner. She now incorporates its principles into her coaching and occasionally practices it with Arizona when her daughter requests it. Susanna describes the immediate effect as a slowing of the breath and a return to bodily awareness. For her and Arizona, the practice is also a form of connection. It is not a replacement for medical or mental health care, but one of several tools they choose to use. 

As Arizona has matured, she has also become better able to communicate her emotions, recognize mood changes, and prepare for transitions. Progress has taken many years, but Susanna sees those skills beginning to come together. Her story offers hope without promising an easy or predictable outcome. Children develop differently, and some will continue to need intensive assistance as adults. Still, communication, connection, and regulation can grow in ways that may be difficult to imagine during the earliest and most overwhelming years.

Community Helps Caregivers Survive and Thrive

Isolation makes an already difficult caregiving experience even heavier. Susanna encourages parents to seek communities where they do not need to justify their exhaustion or explain the complexity of their lives. Through We Are Brave Together, she helps support the mental health and well-being of caregiving mothers around the world. Virtual communities, podcasts, support groups, and online resources can become lifelines for parents who are unable to leave home. They remind caregivers of something essential: You are not the only person living this life, and you were never meant to carry it entirely alone. “I believe that in community we can thrive together,” Susanna said.

Special needs motherhood may not offer weekends off or a clearly marked finish line. But even within its hardest realities, parents can practice self-compassion, release unnecessary expectations, reach for support, and reclaim small pieces of agency. Sometimes grace does not look like a full cup. Sometimes it looks like five quiet minutes, a pile of unfolded laundry, and permission to breathe.