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 health, or physical disabilities—adds a very heavy layer of anxiety, fear, and guilt to that parenting pit.

Amidst a culture that attempts to focus on kindness, empathy, and equality, kids with mental illness, behavior diagnosis, and invisible disabilities can still go unnoticed as their needs take longer to accurately identify and, in many cases, a child has already been labeled ‘trouble’ before the proper services are put into place for their needs to be met. 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 though my own extreme child who has five behavior diagnoses documented for all school officials and teachers to see, the child they were encountering in their classrooms and hallways was a very different version than the boy we were dealing with at home. 

My husband and I are grateful that our son has learned and developed enough coping skills to keep his impulses (mostly) in check while at school where that is expected, 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 constantly having to sleep with one eye open, be concerned for safety, and watch 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 long-term.

Hypervigilance

Hypervigilance for the parent or caregiver of a child or adult with special needs is not just a state of anxiety and alertness, but 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 bodies and minds need to stay alert to keep them alive, extreme parents are constantly at the ready to jump into action to keep their household and their child safe—even if that means 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

Trauma

Since our culture is beginning to research and explore more in 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 context. However, most commonly trauma is defined by an experience that was deeply painful or terrifying.

Raising a difficult or medically complex child is not something that many parents could describe as traumatic. That connotation delivers a feeling of guilt with the admonition that parenting an extreme child somehow means that you love that child less. This is far from the truth. 

Parents of extreme children desperately love their children and they are typically in such a state of trauma that they fail to identify it in themselves because they are too wrapped up in appointments, insurance battles, and IEP meetings to see past what is right in front of them. 

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

PTST & 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 realizing that red flags with their child, researching, and the initial diagnosis. This trauma is perpetuated when a parent begins to mourn and grieve the loss of the childhood they’d imagined and for the child they thought they would have. 

Parents with special needs children often experience repeated stressful events from evaluations, medical tests and procedures, hospitalizations, inpatient treatment, 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. 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, as well as additional symptoms.

  • 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/anxiety
  • Difficulty with relationships
  • Distorted perception of reality (This can include how you view your extreme child)
  • Displace 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 want that for themselves or for their children. It is a difficult reality to be parenting children with mental health diagnoses because you are expected to constantly give beyond what is realistic for your child as well as to continue balancing budgets and dinners, marriage and meals, all while planning appointments, specialists, therapy, and IEPs and brushing off judgments from others—some of whom are those who are supposed to love 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 as well as bolster encouragement from others just like us because sometimes just knowing someone out there understands can be the key to continuing on.

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