The Exhaustion Problem in Extreme Parenting
I am exhausted in a way that parents of neurotypical children may never understand. After 8 years of dark, impossibly difficult, and sometimes scary ADHD behavior, parental burnout is taking its toll. Here’s why I think it’s high time we acknowledged the tired truth about parents who are always ‘on’ while raising children with extra needs.
Every parent spends some amount of time in the pit. You know the one — where you second guess everything you are doing and wonder how badly you might be screwing up your child’s future. Parenting children with extra needs — medical, complex, behavioral, mental, and/or physical health — adds a very heavy layer of anxiety, fear, and guilt to that parenting pit.
Too often, a child’s mental illness, behavior diagnosis, and invisible disabilities go unnoticed as their needs take longer to accurately identify and, in many cases, because they are labeled as “trouble” before the proper services are put in place to meet their needs. This can feel frustrating for teachers, providers, and specialists involved in the child’s treatment, so imagine how their parent or caregiver must feel.
In a recent meeting at my child’s school, I became keenly aware of the fact that the student they encountered in the classrooms and hallways was a very different version of the boy we saw at home. My son’s five behavior diagnoses are documented for all school officials and teachers to see, but we learned that his symptoms vary widely from one environment to the other.
My husband and I are grateful that our extreme child has learned and developed the coping skills he needs to keep his impulses (mostly) in check while at school, but that means at home we are delivered what is left of him after a long day of sitting, learning, and holding things inside.
This version can be very dark, impossibly difficult, and sometimes scary.
After eight years of living this way each day — of sleeping lightly with one eye open, worrying daily for his safety, and watching every word and action — we are exhausted. It is a brand of tired that feels impossible to describe to anyone who isn’t living it, but the effects are now beginning to wear on our bodies and minds in a long-term way.
I am Exhausted from Hypervigilance
Hypervigilance for us is not just anxiety and alertness; it is a constant state of giving of oneself for the needs of another. Vigilance means to be keenly watchful, detecting danger. This means, much like combat soldiers whose safety hinges on their ability to stay alert, extreme parents are forever ready to jump into action to keep their household and their child safe — even if that means protecting them from themselves.
Causes of Hypervigilance in Extreme Parents
- Anxiety from chronic needs
- Physical toll on the body
- Emotional investment to child and partner
- Fear for safety of household members
- Financial strain from excess medical expense
- Constant judgment from outside sources
- Fear of job loss from calls from school/appointments
I am Exhausted from Trauma
Since our culture is beginning to further research and explore the field of mental health, more people are being exposed to words like “trauma.” For this reason, it is difficult to pinpoint one clear definition as the meaning is interpreted differently in different contexts. However, most commonly trauma means an experience that was deeply painful or terrifying.
Raising a difficult or medically complex child is not something that many parents could call traumatic. That connotation delivers a feeling of guilt along with the insinuation that you somehow love your difficult child less. This is far from the truth. A parent can suffer trauma and still be an excellent parent.
Parents of extreme children desperately love them. At the same time, they are typically in a serious state of trauma that they fail to identify because they are too wrapped up in appointments, insurance battles, and IEP meetings to see past those immediate needs.
Things to Know About Trauma and Parenting Extreme Children
- People don’t choose trauma
- Your trauma may be triggered by your child
- Your trauma and your child’s trauma are separate
- Others may see your trauma before you are able to identify it
I am Exhausted from PTSD & CPTSD
Post-Traumatic Stress Disorder (PTSD) generally develops following a stressful event. This diagnosis is common and typically associated with war veterans or people who survive a major catastrophic event.
For parents raising children with mental health needs, trauma can come from recognizing red flags, researching symptoms, and receiving an initial diagnosis. This trauma is exacerbated when a parent begins to mourn and grieve the loss of the childhood (and the child) they’d long imagined.
Parents of children with special needs often experience repeated stressful events including evaluations, medical tests and procedures, hospitalizations, inpatient treatments, and recurrent emergencies or self-harm attempts. The chronic anxiety that comes from having a child with a mental health or behavioral diagnosis can trigger symptoms of PTSD in parents and caregivers.
A related and newly researched condition called Complex Post-Traumatic Stress Disorder (CPTSD) is becoming more widely recognized by doctors and specialists as well. Unlike PTSD, which presents after a single traumatic event, CPTSD results from repeated exposure to trauma over months or years.
The symptoms of CPTSD usually include those of PTSD, plus more:
- Reliving traumatic experiences, sometimes including nightmares or flashbacks
- Avoiding specific situations
- Changes in feelings/beliefs about yourself and others
- Hypervigilance or hyperarousal
- Difficulty sleeping or focusing
- Somatic symptoms
- Lack of emotional regulation
- Changes in consciousness/dissociative episodes
- Negative self-perception
- Extreme feelings of guilt or shame
- Chronic worry, fear, and/or anxiety
- Difficulty with relationships
- Distorted perception of reality (This can include how you view your extreme child)
- Displaced connection with spiritual or world beliefs
- Feeling of hopelessness
Friend, here is what we must remember: No one who is being completely honest would choose to raise a child with extra needs because no one would wish those extra struggles on their child or their self. Parenting through mental health diagnoses is a difficult reality; you are expected to constantly give beyond what is realistic for your child — all while simultaneously balancing budgets and dinners, prioritizing marriage and meals, planning appointments, booking specialists, getting to therapy, coordinating IEPs, and brushing off judgments from others — sometimes from those who are supposed to love and support you most.
It is a path that would destroy many, but here we are — in the trenches together. You aren’t alone. Look for communities where you can get resources and encouragement from others just like you because sometimes just knowing someone out there understands can be the key to overcoming your exhaustion for one more day.
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Updated on July 24, 2020