It is often advised that parents should place their trust in the experts; yet what occurs when a parent notices something that the experts fail to? For Dr. Kimberly Idoko, the question has a deeply personal significance. Since she is a neurologist with board certification, a children's rights lawyer, a mother, and the author of The Miswired Child, Dr. Idoko has devoted her professional life to the study of the brain.
 
However, when she observed slight developmental differences in her own daughter, her concerns at first received the usual reply: wait and see. Instead, she decided not to wait. Dr. Idoko explained on the Trust Me Mom podcast how the diagnosis of Rett syndrome in her daughter had changed her view of medicine, parental advocacy, early intervention, and the influence that parents can have when they realize that something is wrong with their child. Her main point is simple: the things that parents notice are important. 

​A Childhood Experience That Shaped a Career in Medicine
 
Dr. Idoko knew that she had wanted to be a doctor from a very early age. She was shot when she was four and remained in the hospital for a long time; the incident was traumatic but it did, however, give her an early feeling of purpose. She used to think that the experience had been terrible and wished that it could have been made better for other people, after which medicine was the only career she ever seriously considered. Her interest in neurology developed later. While at college she was suddenly given a research fellowship which put her in a brain laboratory. She became fascinated by the complexity of the nervous system and eventually carried out studies in molecular, cellular, and developmental biology with a special focus on neurobiology at Yale. She first received training in neurosurgery before changing her field to neurology. Years later, that expertise would take on a deeply personal significance.
 
When a Neurologist Was Told to “Wait and See”
 
Dr. Idoko gave birth to her first child while she was undergoing training in neurology; even though her son was not definitely a difficult baby in terms of temperament, his development proceeded in a predictable manner. Five years later the girl was born. When Dr. Idoko was looking at her daughter, she noticed a slight asymmetry in the way she moved, and this was when she was about eight months old. Since she was a neurologist, she thought the difference should be given attention. She mentioned her concern to her daughter's pediatrician, but she felt that she was being seen as a mother who was unnecessarily worried rather than as a doctor who had noticed a neurological sign.
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The message could be summed up as saying that she looks good and that she will most likely be fine. The family waited for a while. Finally, Dr. Idoko concluded that she was no longer at ease with it and on her own took her daughter to a physical therapist, referring her for early intervention.
 
Three years later, their daughter was found to have Rett's syndrome, a rare genetic neurological disorder. Looking back, Dr. Idoko believes it mattered that she acted before the diagnosis was final.

​Why Early Intervention Matters
 
Rett syndrome can have an effect on movement, on communication, on walking, on eating, on swallowing, and on other neurological functions. In some cases, children go through a period of developmental regression even though they had previously seemed to be developing normally.
 
Physical therapy began for Dr. Idoko's daughter when she was eight months old. Today, she can walk. She does not speak and uses a speech-generating device which is operated by blinking. She also has epilepsy and this is managed by the use of medication. She goes to school, likes music and swimming, and still takes an active part in family life.
 
For Dr. Idoko, her daughter's progress serves as an illustration of one of the main messages that she passes on to parents: Early intervention can help children to make the most of their developmental potential. It is not necessary for parents to wait for a diagnosis before requesting developmental support.
 
I learned that parents could have a referral made for an early intervention evaluation under the federal Individuals with Disabilities Education Act, which is commonly known as IDEA. All states need to have a procedure for assessing young children who may need early intervention services. A parent who is worried about their child's development need not necessarily wait for a pediatrician to start the process. Dr. Idoko says that you should look for the early intervention program in your state and ask for an evaluation if you think there may be a problem.
 
The assessment has the advantage of bringing in other trained professionals to look at the child, such as physical therapists, occupational therapists, and speech-language pathologists, since these people know about developmental milestones and can therefore decide if some extra support might be suitable. She stressed that the first assessment can be obtained free of charge, even though the cost and the structure of any subsequent services may differ according to the state and the family's circumstances.
 
For those parents who have been asked to wait but who are still worried, it can be a source of empowerment simply to know that this option is available.
 
Becoming a Lawyer to Fight for Her Daughter
 
Dr. Idoko's experience in dealing with her daughter didn't end with early intervention. As the girl got older, the family had to deal with the complexities of special education, medical care, obtaining insurance approvals, costly treatments, and rejections.
 
Eventually Dr. Idoko got frustrated by constantly being told 'no' without knowing how to contest those decisions. What she did was remarkable—she attended law school. She went to Stanford Law School in order to gain a better understanding of the legal systems relating to disability, education, healthcare, and children's rights, all while still practicing neurology and bringing up two children.
 
The experience had served to reinforce once more a lesson that now influences her work: families often need more than just medical information; they also need to understand the systems they are dealing with.
 
“What You’re Noticing Is Real”
 
The book called The Miswired Child by Dr. Idoko was based on a number of such experiences. Its core message begins with validating something parents frequently question: The fact that you are observing in your child should be given some thought.
 
Parents take a great deal of time spending with their children and therefore pick up on changes in their children's sleep, mode of speech, movement, attention, behavior, appetite, energy, and temperament which might not become apparent during a brief medical appointment.
 
Dr. Idoko advises parents to take their healthcare provider when they notice a significant change and to continue pressing the matter even if they think their concerns have not been properly evaluated.
 
Her point is not that parents must know the diagnosis, but that meaningful concerns deserve to be taken seriously and investigated. Parents should be able to say, This is different. I am seeing something. Please help me understand why.

What should parents do when they notice that something about their child’s development has changed, but their concerns are dismissed?

In this episode of the Trust Me Mom podcast (Season 2, Episode 48, available on Apple Podcasts and Spotify), Ekaterina Konovalova speaks with Dr. Kimberly Idoko, a board-certified neurologist, children’s rights attorney, mother, and author of The Miswired Child.

Dr. Idoko shares the personal experience that shaped her career in medicine and how becoming the mother of a child with Rett syndrome transformed the way she thinks about parental intuition, early intervention, medical advocacy, and navigating complex healthcare systems.

Medication Should Be Part of a Larger Conversation
 
The topic of medication also came up, especially in the case of children showing symptoms related to attention, sleep, mood, behavior, or neurological function. Dr. Idoko made it clear that she is not against the use of medication. She gave antibiotics, insulin, medicines to prevent seizures, and other pharmaceuticals as examples of treatments which can be essential and life-changing. What she is concerned about is the use of medication without at the same time investigating what might be causing a child's symptoms.
 
If medication is being considered, she encourages parents and healthcare providers to discuss questions such as:

• What exactly is the symptom we are addressing?
• What result are we aiming to attain?
• We'll use some method to judge if the medicine is having the desired effect?
• Which side effects should we keep an eye on?
• How long shall we expect the child to take it?
• Is there a point at which the treatment should be reviewed or an exit route?
• Are there any other actions we are carrying out at the same time in order to examine the underlying problem?

 
Her emphasis was on intentionality. Medication may sometimes be necessary, but it should never become a substitute for asking why a child is struggling in the first place.
 
Look at the Whole Child
 
Dr. Idoko encourages parents to look beyond a single symptom and consider the full range of factors that can influence a child’s nervous system and development. Nutrition is only one piece of the picture. Sleep, physical activity, emotional safety, environmental stress, screen exposure, and other aspects of daily life can also affect how a child feels and functions.
 
If a child suddenly struggles to concentrate, stops sleeping well, becomes unusually tired, or begins displaying new behavioral challenges, Dr. Idoko recommends approaching those changes with curiosity rather than assuming the behavior itself is the problem.
 
“Food is not the only input. Physical activity is an input. Mental emotional safety is an input. Sleep is an input,” said Dr. Idoko. “How our kids sleep changes our kids’ lives. And so if there is a sleep issue, we really need to interrogate the why, find the cause, because again, it can be a symptom, the brain speaking.”
 
The first step is simply to notice what has changed. The next is to find healthcare professionals who are willing to investigate those changes thoughtfully. Parents do not need to diagnose or treat these concerns on their own. Their role is to pay attention, share what they are seeing, and work with a medical team to determine what may need further evaluation.
 
Be Careful With Supplements
 
Because of the popularity of vitamins and supplements it might tempt concerned parents to start trying things on their own. Dr. Idoko strongly recommends that approach not be taken. The suggestion is to check whether or not the child really does need the supplement before administering it. In any individual child the intake of a nutrient being too low or too high may cause problems, and the quality of the supplements can differ, which is why professional advice is important. Instead of supposing that every child needs a general type of supplement, she says that one should consult qualified healthcare professionals to find out if testing is necessary and to decide what form of supplementation (if any) would be appropriate for that particular child.
 
I asked if this even applied to vitamin C, which we are often encouraged to consume in high doses, and she said, “It applies to everything, my friends. It applies to everything. Because we’re talking about cells, and cells can be harmed by everything in too high supply.”
 
She recommended Natal, which she described as a platform where parents can measure and track children’s micronutrient levels, including things like ferritin, vitamins B, A, E, C and D, selenium, zinc, and omega-3s. She said these levels can be measured and, in her view, should be checked at least annually.
 
 
Small Changes Are More Sustainable Than an Overnight Overhaul
 
Parents already carrying the weight of medical appointments, school concerns, work, family responsibilities, and uncertainty do not need another impossible standard. Dr. Idoko recommends starting small. If nutrition is one area a family wants to improve, that might mean replacing one highly processed snack with a whole-food option.
 
Not the entire pantry.
Not every meal.
One snack.
Once that change becomes normal, another change can follow.
 
Over months, those small decisions can create a very different routine without requiring a family to completely redesign its life overnight. The same principle can apply to sleep routines, physical activity, screen habits, or other aspects of family life. Progress does not have to happen all at once.
 
The Four Inputs Dr. Idoko Wants Parents to Consider
 
Near the end of the conversation, Dr. Idoko summarized several areas she believes are important when thinking about a child’s health and nervous system: food, sleep, emotional safety, and physical activity. 
​
None exists in isolation. A child who is struggling deserves a broader look at what may be happening physically, emotionally, developmentally, and environmentally.

- If sleep changes, ask why.
- If attention changes, ask why.
- If behavior suddenly changes, ask why.
 
The answer may not be obvious. And the answer may not be something a parent can determine without professional support. But asking the question is where the process begins.

Parents Are Not Powerless
 
Dr. Idoko’s story is not a warning against trusting doctors. She is one. It is a reminder that parents belong in the conversation, not at the edges of it.
 
Good care often depends on what happens when different kinds of knowledge are brought together. Doctors understand medicine. Therapists understand development. Teachers see how a child functions in a classroom. Parents know the child across days, months, moods, routines, and subtle changes that may never show up in a short appointment.
 
When those perspectives are taken seriously together, families have a better chance of noticing problems early, asking clearer questions, and finding the right support sooner.
​
A parent does not need to arrive with a diagnosis.
They do not need to have the right medical vocabulary.
And they should not have to walk into an appointment bracing for a fight.
But when a parent keeps thinking, This is not my child’s normal, Dr. Idoko hopes they will trust that instinct enough to speak up.
​
Notice what has changed.
Ask what might be underneath it.
Advocate, even when the first answer is wait and see.
And keep asking until someone helps make sense of what you are seeing.
 
This article reflects the experiences and perspectives shared by Dr. Kimberly Idoko during her Trust Me Mom interview and is intended for informational purposes only. Decisions about a child’s medical care, medication, testing, nutrition, or supplementation should be made with qualified healthcare professionals.

Kathy Long, mother of four and founder and CEO of NixIt AI, shares what she has learned about executive functioning, independence, marriage, maternal guilt, and letting go of perfect parenting.

Parenting advice often assumes that children will learn when they experience the natural consequences of their choices. Forget your homework and receive a poor grade. Refuse to make lunch and feel hungry later. Take too long getting ready and miss an activity. Sometimes that approach works. For children and adults with ADHD, autism, sensory differences, or executive functioning challenges, however, the consequences may be disproportionately painful without teaching the intended lesson.
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Kathy shared with me how raising four very different children changed her understanding of discipline, independence, and parental responsibility. Her experience also inspired her to create NixIt AI, an app designed to help neurodivergent people manage tasks, routines, and executive functioning demands. Her central message to mothers is both compassionate and practical: Understand the need behind the behavior, prepare children for success, establish clear boundaries, and release some of the guilt that comes with raising a child whose development does not follow a predictable path.

When Motherhood Changes the Plan

Before becoming a mother, Kathy was building a career in the telecommunications industry in Chicago. She had ambitions of becoming the CEO of a telecom company. After marrying and moving to Colorado, however, her life changed dramatically with the birth of her first son, Jack.

Jack arrived six weeks early and experienced serious challenges from the beginning. He was jaundiced, struggled to eat, cried constantly, and experienced failure to thrive. Kathy left her job to care for him full time. “For us, the entry to motherhood wasn’t fast. It wasn’t easy. It wasn’t textbook,” she recalled.

Her career paused while motherhood became the place where most of her energy, attention, and problem-solving skills were needed. Over time, Kathy explored nursing, worked at a children’s hospital, returned to sales, earned a master’s degree, and raised three more children. Her professional path did not disappear, but it changed shape repeatedly around the needs of her family.

Years later, those experiences would become the foundation for an entirely new career chapter.

Putting a Mother’s “Voice and Brain” in Her Son’s Pocket 

As a young adult, Jack struggled during and after the pandemic. He has ADHD and autism, and the abrupt move to online college disrupted the family’s carefully constructed plan for his transition into adulthood. He became increasingly isolated and depressed while the family scrambled to find alternatives.

The idea for NixIt AI emerged when Jack attended a medical appointment without Kathy. While she was in a work meeting, he repeatedly contacted her because he was overwhelmed by the questions he was being asked. “All I could think was, ‘My gosh, if I could just put my voice and my brain in his pocket, then he’ll be okay,’” Kathy said. That thought became the beginning of what she called the family’s “Plan C.” With a background in technology, software, and SaaS, Kathy began imagining a tool that could support people through tasks and situations that place heavy demands on executive functioning. Her husband became the company’s engineer and built its technical architecture, while Kathy led the vision and learned new technical skills herself. At the time of the interview, NixIt AI was in its early MVP stage and had been introduced to friends and family.

Building a company together also required Kathy and her husband to learn how to separate their roles as spouses, parents, and co-founders. Therapy, communication, and a willingness to pause when conflict escalated helped them navigate those overlapping responsibilities.

Since she is the CEO of the company, Kathy summarized their business partnership with characteristic humor: “If we fail, it’s on me. If we succeed, it’s because of both of us.”

​Looking Beyond “Bad” Behavior

One of Kathy’s most memorable parenting stories involves seven-year-old Jack, a laundry basket, and a staircase. Kathy found Jack preparing to ride down 11 steps inside the basket. She told him it was dangerous and instructed him not to do it. Jack listened and climbed out. A few moments later, Kathy heard the basket thumping down the stairs. This time, Jack had placed his younger brother Riley inside it. Technically, Jack had followed the instruction. He had not ridden down the stairs himself. What he had not understood was the larger safety principle behind the warning. Kathy later recognized that he had not intended to hurt his brother. He was curious. He wanted to know how fast the basket would travel and what would happen when it reached the bottom.

Looking back, Kathy believes a more effective response would have been to acknowledge that curiosity and redirect it safely. Instead of stopping the experiment entirely, they could have placed a stuffed animal inside the basket and observed what happened. “They’re not there to upset you,” she said of children’s difficult behavior. “It feels like it, but they’re really not. Their whole life is not just about upsetting you. It’s about learning how to adult.”

That distinction can change how parents respond. Rather than asking only, “How do I stop this behavior?” they can also ask:

• What is my child trying to understand or accomplish?
• Is this behavior driven by curiosity, sensory regulation, anxiety, or an executive functioning challenge?
• How can I meet the underlying need more safely?
• What support could prevent the same situation next time?

This does not mean eliminating boundaries. It means making boundaries understandable and designing safer ways for children to explore, participate, and learn.

The Unequal Weight of Parental Guilt

Parents of children who develop easily and respond well to conventional discipline may give themselves too much credit. Parents of children with complex needs often blame themselves too much.

Kathy has experienced motherhood as both a stay-at-home parent and a parent working outside the home. She believes both experiences are difficult in different ways. Stay-at-home mothers may struggle with isolation, loneliness, and unrealistic expectations. Mothers working outside the home may carry guilt about being away or relying on convenience when time and energy are limited.

“You are enough. You’re doing enough,” Kathy said. “If they’re alive at the end of the day, I think you’re good. We’re all going to survive this.” That reassurance is especially meaningful for mothers who feel as though they are functioning on a phone battery that never charges beyond five percent. When a child is crying constantly, sleeping poorly, struggling with sensory input, or requiring creative solutions for every routine, even a loving parent may experience exhaustion and resentment.

Kathy’s advice to her younger self would be to slow down, regulate her own nervous system, and laugh more. “You do not have to rush into the next discipline or rush to the next activity,” she said. “Just take that moment to give yourself that grace.” She recommends taking a breath, placing a hand on the chest or stomach, stepping away when necessary, and creating a small pause before reacting. Sometimes a child’s behavior is genuinely funny, even if it is also inconvenient or mildly inappropriate. Laughter can help release tension and make room for connection.

Parenting neurodivergent children often calls for extra planning, flexibility, creativity, and advocacy. In a recent conversation, Kathy Long, mother of four and founder of NixIt AI, shared how raising neurodivergent children has led her to rethink conventional ideas about discipline, independence, and what children need in order to thrive. Catch the latest Trust Me Mom podcast episode, Season 2, Episode 47, on Spotify and Apple Podcasts to learn how you can support your child’s executive functioning, set boundaries with compassion, encourage independence, and let go of the guilt that so often comes with parenting.

​A Shower is Not Self-Care

Kathy also rejects the idea that meeting a basic need should count as a mother’s self-care. “It is such BS that people say self-care is taking a shower,” she said. “No, that is the bare minimum. Showering is a human need, not self-care.” Real self-care is something that restores a sense of identity and pleasure. It might mean reading, playing a sport, getting together with friends, joining a book club, going on a date, or doing something that has nothing to do with children or household responsibilities.

For Kathy, an all-women’s soccer team helped her hold on to her identity as an athlete. Her teammates supported her through different stages of motherhood, sometimes holding her baby while she returned to the field.

Community did not always arrive automatically. Kathy encourages mothers to take the first step. “Be the mom that you want others to be,” she said. “Don’t rely on other people to invite you out or invite you to do things.”

Libraries, recreation centers, playgrounds, playgroups, sensory-friendly spaces, sports teams, and neighborhood gatherings can all create opportunities for connection. One casual conversation at a children’s gym led to a friendship Kathy has maintained for more than 25 years. And mothers do not need a spotless home or elaborate food to welcome people into their lives. “Your house is clean enough,” Kathy said. “Just invite people over.”

How Reducing Food Battles Encouraged Independence

Kathy also shared her family’s experience with sensory differences around food. One child sought intense flavors, including hot peppers and spicy snacks. Her daughter, by contrast, had a strong aversion to most foods and remained extremely thin.

Kathy faced a familiar dilemma. Should she continue fighting to make her daughter eat the family meal, or find an approach that would keep her nourished without turning every dinner into a battle? She chose to separate meal components so her daughter could select what felt manageable. If none of the available foods worked, her daughter could prepare a sandwich, cereal, fruit, or another simple option herself. The family also created a designated shelf containing foods she would reliably eat.

What Kathy initially worried was “lazy parenting” gradually gave her daughter autonomy. She learned to identify what she could tolerate, prepare her own meals, and experiment without pressure. Over time, the child who once ate very few foods became an enthusiastic and skilled cook. The lesson was not that one strategy will work for every child with feeding difficulties. Rather, Kathy’s experience illustrates what can happen when a family reduces conflict, respects sensory differences, and looks for age-appropriate ways to build agency.

Independence Does Not Mean Removing Every Support

Kathy believes in giving children meaningful responsibilities. Her family uses rotating kitchen-cleaning assignments, with clear instructions explaining what a clean kitchen means in their home. Her children learned to do laundry, prepare lunches, and contribute to household routines. Her app helps the family place these responsibilities on a calendar and break them into understandable steps. The system does not eliminate every complaint or argument, but it reduces the need for repeated reminders and makes expectations more visible.

At the same time, Kathy does not define independence as withholding every form of assistance. Before a recent family movie, she realized that putting the event on the calendar had not been enough for Jack, who is now an adult. He needed more time and a direct prompt to transition from sleeping to getting ready. She could have left without him, but she knew he genuinely wanted to join the family and was struggling with executive functioning rather than indifference. Supporting him meant anticipating that difficulty and giving him enough time to succeed. If she had provided that preparation and he still was not ready, then missing the outing could have been an appropriate consequence.

This approach combines compassion with accountability. “Try to make it frictionless for yourself, but set some boundaries and expectations,” Kathy said. “I think that’s what makes kids feel more grounded and in control.” The goal is not to prevent every consequence. It is to distinguish between a manageable consequence that teaches and a catastrophic one that overwhelms the child without building a skill.

The Long View of Motherhood

Kathy now has the perspective of watching her children enter adulthood. One son is heading to medical school. Her daughter is preparing for college. Her adult children cook, work, tell stories, make decisions, and continue developing lives of their own.

The intense younger years, which once felt endless, now seem remarkably brief. “The days are long, but the years are short,” Kathy said. “It will go away in a puff.”

Her final encouragement is not to chase perfect parenting, perfectly disciplined children, or a perfectly maintained home. It is to protect connection, friendship, laughter, and the relationships that will remain when the most exhausting season has passed.

Parenting neurodivergent children may require more planning, flexibility, creativity, and advocacy. It may also require parents to reconsider conventional ideas about discipline and independence. But children do not need flawless mothers. They need adults who are willing to observe, adapt, repair, establish boundaries, and keep learning alongside them. Most importantly, mothers should not have to do that work alone.

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.