They Can’t Do It Alone

 

I thought if I stayed as my professional self, I could at least try to avoid the shame, stigma and what I perceived as blame for their illness. I even went back to school at the height of their illness to learn even more and gain the skills I thought I might need to advocate better. Being separate allowed me to intellectualize the struggles we were having and stave off some of the vulnerability and shame of being a scared, overwhelmed caregiver. It took me a long time to understand that this behavior also cut off the valuable knowledge I had to share and what other caregivers could share with me. You never help someone, or receive help, staying separate from them.

 

The author and her family getting ready for a rollercoaster ride

The time is now to unite our voices and stand together to support caregivers who have children with mental health needs, start the path to healing, and find tangible solutions and cures. We know that the American Academy of Pediatrics (APA) and The Children’s Hospital Association (CHA) have declared pediatric mental health a national emergency.[1] The Boston Globe has reported the current mental health crisis is a “pandemic within a pandemic”.[2] The CDC reports that in 2020, suicide was the second leading cause of death for people ages 10-14 [3] , and emergency room visits for children’s mental health are at an all-time high, with children waiting on average a week to be placed in a psychiatric bed.[4]

 

Those of us in schools and working in the mental health field were already observing an increase in acuity pre-pandemic, and now we find ourselves drowning in a tsunami of mental health needs. I have heard more discussions about how to increase access to care for our children, how to model talking about mental health, and how to teach self-care. This is a start.

 

There is much we could potentially change or alter to offer better, more robust support, but the most significant shift we could make right now is to turn to who is on the frontlines attempting to support these children: their caregivers.

 

Caregivers are essential to the well-being and health of their children. They are the gatekeepers of their children’s health and the primary support for them. You will not be able to help children without ensuring their caregivers are well supported. When they have access to resources, support, understanding, and care, they can help their children heal. According to the CDC, “Parents are the frontline public health workers – they nurture and support, supervise and teach healthy habits, make sure their child is safe and supported in their community, and help their child get the education and health care they need” (CDC, 2022, para 1).[5] Caregivers are essential: We need them to be healthy for their children and to have access to the right supports to be able to access care. When their children are struggling, we will predictably see their caregivers struggle more. I know this well, because I am one of them. 

 

Defining the Problem

Since I landed in this world of caregiving for children with mental health needs, while simultaneously working in that world as a professional, I have tried hard to understand what is needed to help this group. There is a disconnect for us, and that disconnect can make it hard to step in and support us, even though all the professionals are trying their best to help. The overarching issue, and what you must understand first and foremost, is that caregivers are stuck in an endless cycle of stress and anxiety while attempting to navigate a complicated system, and sometimes multiple complicated systems, while watching their children perpetually suffer. 

 

When you perceive that your life, or your loved one’s life, is in danger, your body has an amazing physiological response to ensure you are protected. I often give the example that your body believes it is preparing to run from a lion. Evolutionarily speaking, this is exactly what your limbic system (where the amygdala, and the alarm system for the brain, resides) is designed to do: protect you from imminent danger and possible death. When the amygdala tells the body it may be in danger, it sends out a cascade of stress hormones (cortisol, adrenaline, norepinephrine) to prepare the body to run or turn and fight for its life. 

 

If the body becomes overwhelmed, and death appears imminent (or a person’s stress response is prolonged) you may see a freeze response. According to trauma expert Bessel van der Kolk, when fighting or running does not take care of the threat, our bodies activate the last resort – the reptilian brain and the ultimate emergency system – which initiates collapse, the freeze response and disengagement.[6]

 

Watching our children struggle, while desperately running alongside them to try to find paths to healing, means we are a group that is constantly in a fear-based state. The challenging part of this is that everyone’s stress reaction is different. Our bodies react in different ways when stress hormones alert our body that it is in danger. One person may have a fight reaction and they may appear to want to argue, defend or advocate constantly. Another may have a flight reaction and may seem avoidant of any conversations or not able to turn and face what is happening. Still, others may have a freeze reaction and be unable to move on accessing care, may not respond to treatment recommendations and may not return calls or emails.

 

I have recognized this pattern in myself. My stress response is typically to fight. When I get scared for my children, I automatically shift into advocating and fighting for them. At times, when I am so scared I can no longer move, I become stuck and frozen. By the time I reach freeze, I am often totally unaware I am terrified. I call them the “hit my knees moments” when I literally don’t even realize that I have been swept up into another wave of fear and wake up to this realization – almost dazed – that it happened again.

 

The more I work with other caregivers like me, I see similar patterns emerge. Understanding me is essential to supporting my children. If you do not understand the why behind how to care for, have empathy for, and work with us caregivers, you will find it exponentially more challenging to help our children. You may even note our stress reactions confound access to supporting us, and why it is imperative to see us through this lens.

 

We know from the research that caregivers supporting children with chronic illness are consistently engaged in this stress response. This prolonged stress response creates a complex trauma presentation and reactions and behaviors that may be seen through the lens of a Post-Traumatic Stress Disorder (PTSD) diagnosis. The Wall Street Journal wrote in a 2019 article that: “Post-traumatic stress disorder in combat soldiers is receiving greater attention and wider societal recognition. Now doctors and researchers are trying to do the same for a group that has similar symptoms: parents of children with life-threatening medical conditions” (Wall Street Journal, 2019).[7]

 

One only has to look at the statistics on childhood suicide to know these caregivers are in a desperate bid to save their children from these illnesses. I would argue this group of caregivers is suffering more than most. Research into one group of caregivers who support children with PANS/PANDAS (an illness that presents primarily as mental health, but whose roots are in medical issues and what both of my children suffer from) found that parents of children with PANS/PANDAS reported higher levels of burden than caregivers living with individuals with Alzheimer's disease.[8] Caregivers are a group providing critical support to children with mental illness and are stuck in an endless cycle of fear and anxiety when what they need and deserve are understanding, care and support.

 

How Did We Get Here?

I have sought to get to the root of how we caregivers got to this place of complex trauma and a perpetual state of chronic fight, flight or freeze. We are our children’s best advocates and understand them best. When you learn to work with us, you hold the key to helping our children.

 

One of the biggest barriers, or stressors, for us as caregivers is mental health stigma. This truly undoes everything. We are in 2022, and we do discuss mental health more openly now, but make no mistake, mental health stigma is alive and well and it inhibits progress in finding cures to mental illness, accessing support for families, and diagnosing and supporting children in finding healing. We may discuss mental illness more, but we continue to be resistant to openly discussing our struggles with mental illness. It is a shame spot like no other.

 

When a child is hospitalized for psychiatric reasons, communities typically don’t begin casserole trains or have websites set up to help the family.[9] We are a group who often perceive we are left on an island to advocate alone and in fear of community opinion and contempt. No one wants to have “that” child, who gets kicked off a soccer team for swearing and tantrumming, or who has the ambulance at their house because their child wants to hurt themselves.

 

There is the unspoken belief that people do not want to discuss mental illness or hear about a pain that is mostly invisible and most hope they never will have to feel. Even if the community might want to embrace us, the fear and the shame of the experience makes us fiercely protective of our children being stigmatized. Stigma causes an acute separation from our community and the sense of otherness does not go away easily.

 

Stigma is one part of the separation. Another is realizing that the systems put in place to support our children are complex and overwhelming, and there is no clear rubric for how to approach them. Caregivers have to learn new languages: the mental health system, the special education system, and sometimes the medical system. Each has different terms, expectations and ways you must interface with them. They are complicated, nuanced and certainly not intuitive. In the mental health system, you will have to learn what someone means when you must have your child “evaluated,” how to access the crisis team, how to find a therapist that takes your insurance, what types of medication might be most helpful, and even when to call 911.

 

None of that will help you when you then realize your child needs support in school as you then have to learn that language as well. You must pivot to understanding special education law, ADA regulations, timelines, requesting services and effective progress. If you then think back to what caregivers' stress response may be, you can imagine how challenging this is if you are a freezer and cannot ask for help or if in your fight response you cannot seem to communicate well because you are presenting as angry and emotional. 

 

Once you have a basic understanding of the system(s) you must work within, you will quickly realize that there often isn't a true “cure.” The path out of a mental health diagnosis is simply not linear. Unlike a medical diagnosis, such as diabetes, you do not get a clear rubric for healing. You may need to try all different sorts of treatment modalities to identify what will work best for your child.

 

Do they need CBT, ERP, EMDR or DBT?[10] Which will they respond best to for their diagnosis? If these therapies don’t work, medication may be tried. Psychotropic medications can truly be life savers, yet they often take weeks to show efficacy, while caregivers anxiously sit by assessing for safety and ensuring activities of daily living are still happening.

 

These medications can also come with side effects that are overwhelming for caregivers to manage: weight gain, slowed movements and agitation, to name a few. These supports are trial and error with a need to individualize for each child and sometimes the perfect balance of support can take months and years to find, all the while the caregivers fight, flee and freeze their way through advocating.

 

As caregivers navigate these systems, we also realize that these systems have institutional knowledge that is not always caregiver-friendly. Through the years, we have created terms such as schizophrenogenic mothers, refrigerators mothers, Munchausen by proxy mothers. All imply the mother is in some way responsible for the child's illness. While these terms are no longer widely used, thanks in part to caregivers who demanded change, other words creep in routinely: controlling mothers, hysterical mothers, helicopter parents, snowplow parents. Caregivers may often hear the implied, if not explicitly stated, messages of What could you be doing differently so your child would not want to hurt themselves? How can you change your behavior so your child’s behavior improves? The questions may not be as blatant as this, but what I found as a caregiver was I often only heard the questions as indictments of my parenting. The shame and isolation of the illness are so great that I had already assumed it was my fault I couldn’t get them better.

 

Shame, blame and isolation compound to deliver grief as an additional barrier. We are a group stuck in trauma and grieving the loss of the life we thought we would have. This grief is not culturally sanctioned grief, not openly acknowledged and so it also happens in isolation. The loss of a life we thought our children would have. Birthday parties, sports activities, dance recitals, graduations – all take on a different meaning.

 

You may be grateful that your child is alive, grateful they are stable, or grateful they have a friend, but you are mourning the very typical activities that your child may miss. Maybe they are placed out of district for school and must leave their home community. Maybe they are too anxious to leave their house. Maybe they have been to an in-patient psychiatric unit as a result of self-harm. Or maybe they can walk through the world, but you know how hard it is for them to get through each day.

 

This is a loss. In the midst of trying to shore ourselves up to support our children, we get hit with waves of sadness at the latest social media pictures of the school dance they missed out on, the birthday they weren’t invited to, or the friend group they used to be part of but are no longer welcome to join. 

 

When we take into totality the reasons behind the complex trauma, and there are massive barriers I didn’t address here, such as racial inequities inherent in these systems as well as the socioeconomic inequities that prevent caregivers from accessing care, we understand why we caregivers are struggling. We are stuck in an endless cycle of anxiety racing to support our children. Trauma researcher and professor, Dr. Stephen Porges, would say the way through this chronic stress response is through social engagement and connection.[11] We have a lot of work to do to connect with caregivers and support them in finding ways to decrease their stress and ultimately persevere in finding healing for their children.  

 

Professional vs. Personal: Can I Stay in the Cheap Seats? 

Finding connection and breaking down these barriers is harder than we can imagine and takes active engagement of the professionals working with caregivers, and caregivers being open and trusting of the support. Walking through these systems as a social worker, special educator, school administrator and mother often feels like a tightwire act. A tightwire act I desperately tried to get out of walking, over and over.

 

Being on the other side of the table is uncomfortable. In my 20s, I was an in-home therapist, similar to the ones who we had in our home helping us. To say it was a humbling experience that I wanted to avoid might be an understatement. Being the one asking for – pleading for – help was not what I had in mind as a professional. I perceived I should know how to navigate these systems and know how to help my children. I was stuck being scared and overwhelmed, literally every day. All I wanted was out. 

 

I equate this tight wire act with the arena Brené Brown talks about in her books and podcasts. As a caregiver, I was thrown into the arena with all the other caregivers of children with needs. Once there, I just wanted out. I was in a desperate bid to save my children and I was uncomfortable all the time. I fought harder than I ever fought before, trying to get them help and also feeling compelled to legitimize and explain that this horrible invisible illness that was tearing our family apart was real. What was happening to us was seemingly beyond my control, even as a competent professional. I was broken and battered and stuck in constant fight mode. I didn’t want to be there.

 

The arena is messy, uncomfortable and unpredictable. I just wanted to be the professional who could fix things. Brown explains that the cheap seats outside the arena are reserved for those who want to stay separate from the fight, who chose to not be vulnerable and may even judge those in the fight.[12] I think cheap seats may not be the best way to describe how I saw them, maybe “safe” seats. They just seemed so much safer to me.

 

I initially tried hard to remain outside the arena while my children were struggling. I would sit in my safe seats with the other professionals who didn’t want to go into the arena. I thought if I stayed as my professional self, I could at least try to avoid the shame, stigma and what I perceived as blame for their illness. I even went back to school at the height of their illness to learn even more and gain the skills I thought I might need to advocate better. Being separate allowed me to intellectualize the struggles we were having and stave off some of the vulnerability and shame of being a scared, overwhelmed caregiver. It took me a long time to understand that this behavior also cut off the valuable knowledge I had to share and what other caregivers could share with me. You never help someone, or receive help, staying separate from them.

 

The caregivers in the arena were the people I needed most to find the path through to healing for my children. Once I started to take risks to share what was happening, I realized they were the ones who held the key to my children’s health. They had been in the arena so long; they held doctorates that they earned, but never had time to go back to school to get.

 

Those brave caregivers in the arena also know who the professionals are who are willing to have humility, kindness and vulnerability enough to join them in the arena. The ones who have chosen to leave those safe (cheap!) seats and stand shoulder to shoulder with caregivers. They will meet my family where they are at, they aren’t afraid their ego will be bruised or that they may be wrong – they are far more concerned with helping then they are with being right. The educators and mental health professionals who I have worked with regarding my children who are in the arena with me are the ones I trust.

 

This is the work for all of us; being willing to sit in each other's pain and work together to create lasting change. That’s really what Dr. Porges, Dr. van der Kolk and countless trauma therapists would say: We need social connection with others to get out of our stress response and truly heal. I am committing to staying in the arena, both as a caregiver protecting, supporting and loving my children and as a professional who supports caregivers like me.

 

I plan to stay in the arena and from my spot here I am going to start a rallying cry: We need a cure for these illnesses. We professionals and caregivers are exhausted. We don’t need any more platitudes or self-care. We need no more mental health ableism. We need true healing for our children and ourselves. We are in 2022 and we deserve that.

 

The science and research are moving forward, and we must turn to it and begin to search for true healing. Tom Insel, the former director of the National Institute of Mental Health, recently said: “One of the things that I struggled with was trying to understand this gap between our scientific progress and our public health failure. I think we’ve got to understand why it is that we’ve been able to do so well on the science [front] and so poorly on the delivery of care for the 14.2 million people with serious mental illness in this country” (NPR, 2022).[13] I could not agree more and I would argue we seem to be moving backward.

 

I recently listened in as a young professional asked terrified caregivers if they were scared to have their child home after a massive suicide attempt. That professional went on to share that caregivers should know their child may always want to die and have thoughts of dying. Having been in a very similar place at one time, I am crying out from the floor of the arena: enough!  We would never do that with any other illness. Ever. We would seek a cure at any cost, not explain to a terrified parent they simply had to accept death as a possibility. And not just any death, a death at their child’s own hands.

 

We deserve better. Our children deserve better. A cure will not be easy to come by, but more than likely challenging to find and needing everyone involved, with all tools that we have gathered over time (medication, therapy, science, research) to ensure children are not relegated to lifetimes of symptom management and possible death. The time is now to unite our voices from that arena floor, stand together to support caregivers in caring for their sick children, start the path to healing, and find a cure.

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^[1]American Academy of Pediatrics. (2021, October 19). “AAP-AACAP-CHA declaration of a national emergency in child and adolescent mental health.” American Academy of Pediatrics. https://www.aap.org/en/advocacy/child-and-adolescent-healthy-mental-development/aap-aacap-cha-declaration-of-a-national-emergency-in-child-and-adolescent-mental-health/

^[2]Fava, M. (2021, December 13). “The country’s mental health crisis: A pandemic within the pandemic.” The Boston Globe. https://www.bostonglobe.com/2021/12/13/opinion/countrys-mental-health-crisis-pandemic-within-pandemic/

^[3]CDC. (2022, May 24). “Suicide Prevention.” CDC. https://www.cdc.gov/suicide/facts/index.html

^[4]LeMoult, C. (2022, January 24), “Patients in mental distress spend days in MASS ER waiting for inpatient beds.” WGBH News. https://www.wgbh.org/news/local-news/2022/01/24/patients-in-mental-distress-spend-days-stuck-in-mass-ers-waiting-for-inpatient-care

^[5]CDC. (2022, April 11). “Supporting parents to help children thrive.” CDC. https://www.cdc.gov/childrensmentalhealth/features/supporting-parents.html.

^[6]van der Kolk, B. (2014). The body keeps score. Penguin Books.

^[7]Dickerson Marcus, A. (2019, February 19). “For parents of ill children: A growing recognition of PTSD.” Wall Street Journal. https://www.wsj.com/articles/for-parents-of-ill-children-a-growing-recognition-of-ptsd-11550577600.

^[8]Farmer, CA., Francovich, J., Leibold,C., Sainani, K. (2018). “The burden of caring for a child or adolescent with pediatric acute-onset neuropsychiatric syndrome (PANS): An observational longitudinal study.” The Journal of Clinical Psychiatry 80(1)DOI:10.4088/JCP.17m12091).

^[9]CBS News. (2014, September 14). “The stigma of raising a mentally ill child.” CBS News. https://www.cbsnews.com/news/stigma-of-raising-mentally-ill-child/

^[10] National Alliance on Mental Illness. (2022) “Psychotherapy.” National Alliance on Mental Illness. https://www.nami.org/About-Mental-Illness/Treatments/Psychotherapy

^[11] Poges, S. (2009). The polyvagal theory: New insights into adaptive reactions of the autonomic nervous system. Cleve Clin J Med. 2009 Apr; 76(Suppl 2): S86–S90. doi: 10.3949/ccjm.76.s2.17

^[12] Brown, B. (2012). Daring greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead. Penguin Books.

^[13] Chatterjee, R. (March 1, 2022). “In ‘healing,’ a doctor calls for an overhaul of the mental health care system.” NPR. https://www.npr.org/sections/health-shots/2022/03/01/1082993901/in-healing-a-doctor-calls-for-an-overhaul-of-the-mental-health-care-system