The Silent Struggle: Why Parents of Kids with Complex Mental Health Needs Are Exhausted

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In my opinion, being a parent is one of the most amazing gifts I have ever experienced. I will never forget each of my newborns being laid on my chest. I never really knew love until they each arrived. 

Unfortunately, when we become parents, caregivers, bonus parents, or loved ones as part of the village raising a child, we also quickly learn that they don’t come with manuals telling us how to navigate every potential situation. This means that we do what we can and handle each situation as it arises. 

While I was pregnant with one of my children, I was also starting the divorce process from my co-parent. At the time, coupled with hormones, it felt catastrophic and was an extremely emotional experience. I cried for three months straight and struggled to get out of bed most days. 

I will never have absolute proof, I strongly believe that this high level of stress was a catalyst for my child’s genetic predisposition for mental health and neurodevelopmental conditions to come to fruition. Both of my children are amazing, talented, and wired beautifully in different respects. I have come to appreciate the differences as unique gifts and also have learned how fascinating the brain can be. 

why parents of kids with complex mental health needs are exhausted
You Look Fine

At no point do any of us get asked how we would like our brains wired and control what happens next. I think the hardest part for most people is remembering that mental health can be a blessing and a curse for all people at different points in their lives. Brain functioning is invisible to the naked eye leaving most people left to assess a person’s physical appearance as a means to understand how they should or should not be functioning. 

As a teacher and now as a parent, I have heard countless times:

“She looks fine.” 

“He has nothing wrong with him. He’s just lazy.”

“They just need to try harder.”

“It’s the parents fault.”

This would make sense if simply looking at a person was an accurate and comprehensive assessment of a person’s health and functioning. Imagine if it was acceptable to look at someone and say, “They don’t look like they have diabetes, so they just need to try harder to produce more insulin and they’ll be fine” or “That kid would never have a heart murmur if it weren’t for the terrible parents.” It would be considered bizarre at best, yet mental health is so stigmatized that we say things like that and many people will nod in agreement. 

Sometimes as parents/caregivers, we are no exception. I have had advanced training in mental health and I am still often guilty in forgetting that my child does the best they can with what they have. This is more challenging on days when emotional regulation is reduced and behaviors are more intense and frequent.

Caregiver Burnout is Real

A 2019 study by the Mental Health Foundation UK found that over a quarter (27%) of parents/caregivers with children who have mental health needs felt exhausted ‘all or most of the time’. Of these caregivers, 20% said they had no support network in place to help them manage their child’s mental health. Moreover, nearly half of all participants stated that they felt they had no time for themselves, whilst a third reported feeling ‘overwhelmed’ as their primary emotion.

As a parent, in all honesty, this is a hard topic to talk about because it’s so stigmatized and parents are often the first to be blamed. We are usually so exhausted just trying to stay afloat that we don’t have the energy to try to educate the rest of the world when we’re just trying to educate ourselves and take care of our families. It also becomes a delicate dance of trying to explain our journey without our words being hijacked into more narratives of bad parenting or lack of love. 

Unfortunately, until we get louder, continue to educate ourselves, then research will proceed at a snail’s pace, opportunities to educate will be missed, misguided narratives will remain the mainstream, and more families will continue to struggle.

Here is Why Parents of Children with Complex Mental Health Needs are Exhausted:

1. It’s a constant emotional rollercoaster: Raising a child with complex mental health needs means riding an emotional rollercoaster that never seems to end. From moments of joy and progress to moments of frustration, despair, and sadness, we experience a whirlwind of emotions. Our hearts ache when our child struggles, and we celebrate even the tiniest victories. This emotional intensity can drain our energy and leave us feeling mentally and physically exhausted. I think often about if it’s this exhausting for me what it must feel like for my child.

2. The relentless advocacy: As parents and caregivers, we become fierce advocates for our children. Our systems are fragmented and dysfunctional leaving us as the primary care coordinators in a world with limited to no high-quality resources. We tirelessly navigate the complex healthcare and education systems, seeking support and appropriate services. We attend countless appointments, meetings, and therapy sessions, always advocating for our child’s needs. The constant research, paperwork, phone calls, and negotiations can be overwhelming. It’s like having a full-time job on top of all our other responsibilities.

3. The endless worries: Our minds are constantly filled with worries. Will our child receive the help they need? Are they happy? Are they safe? Will there manic or Autistic traits be misinterpreted as something else? These concerns can keep us up at night, causing anxiety and restlessness. We worry about their future, about the challenges they may face, and about their overall well-being. The weight of these worries adds another layer of exhaustion to our already heavy load.

4. The societal misunderstandings: Let’s be honest, society often misunderstands complex mental health needs. We live in a world that is quick to blame without facts, science, or compassion. We may encounter judgmental stares, insensitive comments, or even well-intentioned but ill-informed advice from others. It can be isolating and disheartening when people fail to grasp the nuances of our child’s condition. The constant need to educate and advocate within our own social circles can be exhausting and emotionally draining.

5. The 24/7 caregiving: Caring for a child with complex mental health needs is a full-time, round-the-clock responsibility. We’re always “on” and ready to provide the support, guidance, and care our child needs even during our work days. A crisis rarely comes when it is convenient. We manage medications, therapies, appointments, and daily routines while ensuring a safe and nurturing environment. This level of constant caregiving leaves little time for self-care and rejuvenation.

6. The self-imposed guilt: We often find ourselves wrestling with guilt. You don’t have to tell me I’m a bad parent because there isn’t a single parent of a child with serious mental health needs that hasn’t already carried immense guilt at some point. Guilt for wondering if I caused this, for feeling exhausted, for not being able to “fix” everything, or for occasionally needing a break. We may question our abilities as parents and worry about whether we’re doing enough. This self-imposed guilt adds unnecessary weight to our already heavy load and can contribute to emotional exhaustion.

7. Systems are dysfunctional, fragmented, and lacking high-quality care:

One of the major sources of exhaustion for parents and caregivers of children with complex mental health needs is the dysfunctional and fragmented nature of the systems meant to support us. The healthcare, educational, and social service systems often operate in silos, making it difficult to navigate and access the necessary resources.  

Having more mental health professionals is not helpful to a parent of complex needs if they are not trained to be effective in treating serious mental health conditions. For example, many medicine prescribers are using antiquated theory that Bipolar cannot be diagnosed until 18 when there is an abundance or research for the last couple of decades debunking that as missed opportunities for early intervention and improving outcomes.

We find ourselves running from one agency to another, filling out countless forms, and facing long waitlists, all while our child’s needs remain unmet. The lack of coordination and collaboration among these systems leaves us feeling frustrated, overwhelmed, and exhausted.

8. Research is only emerging compared to other medical conditions:

I sat in a conference a few years ago, when the psychiatrist keynote said, “We have about 30% accuracy when it comes to diagnosing mental health conditions.” (Insert the mind-blown emoji here.) When it comes to mental health, especially in children with complex needs, research and advancements are still in the early stages compared to other medical conditions. 

This means that there is a lack of accurate diagnostics, evidence-based practices and treatment options specifically tailored to our children’s unique neural challenges. As parents and caregivers, we often find ourselves in uncharted territory, trying various approaches and interventions in the hopes of finding what works best for our child. The constant search for effective strategies can be mentally and emotionally draining.

9. Lack of coordinated care:

Another aspect that contributes to our exhaustion is the lack of coordinated care for our children. We are left to navigate the maze of resources on our own, often without clear guidance or a centralized system that connects various professionals and services. It becomes our responsibility to research, reach out, and piece together a patchwork of support. The burden of finding resources and then coordinating appointments, therapies, and interventions falls squarely on our shoulders, adding to the already overwhelming demands of caregiving.

10. Insurance companies determining care:

The role of insurance companies in determining the care our child receives adds an additional layer of frustration and exhaustion. We often find ourselves fighting for coverage and battling with insurance representatives who may limit or deny essential treatments and therapies. 

A child admitted to a hospital for suicidal ideation is at the mercy of insurance or Medicaid to determine the length of treatment versus allowing doctors to create a treatment plan in the best interest of the child. It is disheartening to witness our child’s well-being being reduced to a series of checkboxes and financial considerations. Navigating insurance policies and advocating for the care our child needs can be an exhausting uphill battle.

11. Lack of outcomes-based standards for professionals:

In the field of mental health, there is a lack of consistent outcomes-based standards for professionals. Unlike other medical conditions where specific metrics guide treatment decisions, mental health interventions often rely on subjective assessments and trial-and-error approaches. This lack of clear benchmarks can leave us feeling uncertain about the effectiveness of the interventions our child receives. It’s exhausting to navigate a landscape where the measurement of progress feels ambiguous and open to interpretation.

12. Poorly Informed Decision Makers:

When decisions about mental health support are made without seeking expert advice or considering input from diverse groups of parents and young people in the journey, it can be incredibly frustrating. Inclusive decision-making is essential to ensure that mental health solutions are effective, compassionate, and tailored to meet the diverse needs of children and young people.

By seeking input from those who are directly impacted, decision makers can gain a deeper understanding of the day-to-day realities and challenges faced by families navigating the complexities of mental health.

Politics and bureaucratic red tape can often hinder progress in mental health support systems. Instead of prioritizing the well-being of children and young people, decisions may become entangled in political agendas, budget constraints, and competing interests. As parents, we advocate for a system that places people’s lives at the forefront, recognizing that the mental health of our children is not a bargaining chip or a line on a budget sheet.

Last thoughts are to parents/caregivers.  Give yourself permission to feel however you feel, celebrate the successes, and most importantly prioritize your own wellness. The journey we’re on is undeniably challenging, and it’s okay to admit that it’s tough. We’re doing the best we can with the resources available to us. I hope you’re able to find support and understanding from friends, family, or support groups. You’re not alone in this. I’m cheering you on every step of the way. 

Need more support, tools, learning or high-quality resources? Raising a Beautiful Mind is the premier holistic, evidence-based source for parents/caregivers of children with complex mental health needs. 

Jennifer Ulie, Ph.D.

Jennifer Ulie, Ph.D.

2x Founder, CEO, Motivational Speaker, Author, Teacher, PhD, and Geek about holistic health and evidence-based practices to help people unlock the best parts of themselves again. Follow @mymensana.

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