Practicing Empathy and Compassion Protecting the wellbEing of child advocates

Nightmares, hypervigilance and sudden dread and panic. This is the aftermath of three and a half years of unsuccessful advocacy on behalf of one of our multi-exceptional kids. Far from being the beginning of the healing process, the above description is of my experiences a whole year on from our son's shift out of the regular schooling environment to learning at home - where I might add, he is now thriving!

Diverse Needs of a Multi-exceptional Learner

Our child has diverse needs. He is a gifted learner and excels in math, reading, science, strategic thinking and picking up on the emotional vibes of others. He experiences debilitating anxiety, has perfectionistic tendencies, gets sensory overload with sound and light and, as an introvert, gets "peopled out" very, very quickly. As such, he falls into the group of learners known as "multi-exceptional".

His needs are best met through full-time Correspondence school, learning from home, an approach which is proving successful. But to get to this point has been a traumatic journey, for child and family. We continually work hard to try to identify and meet our child's health and wellbeing needs, as we should, but reflecting on these experiences I have begun to wonder about what might need to be considered with regards to the health and wellbeing of the families involved in advocacy, and what schools might need to know about the unseen impact of their chosen approaches.

The poor fit between the schooling environment and approaches, and my son's needs resulted in maladaptive behaviours. These were an expression of his needs being unmet and the necessity for compassion coupled with altered approaches.

It was stressful as a parent wondering if any given day would be a "good day", if my child was going to cope at school, if I was going to get yet another call to calm and collect my child, and then have to face the principal's office...yet again. The longer this all went on, the harder it seemed to get.

The Compounding Nature of Ongoing Difficulties

It was difficult trying to convey at enrolment that this child needed an IEP (Individual Education Plan) and RTLB (Resource Teachers for Learning and Behaviour) support to put a transition plan and support in place to respond to his diabilitating anxiety, only to be rebuffed with a statement that this new environment was all he needed.

It was difficult to try and help reframe the view's of others in meeting after meeting, in an attempt to shift beliefs from "naughty and deserving punishment" to "not coping and needing help".

It was difficult to try and show that, actually my child is lovely, gentle and responsive - so very different at home and in other contexts than what was being seen at school.

It was difficult trying to be heard, as I expressed the need to engage my son in learning in his areas of strength and interest, working at his level and pace - something which was shown at home to be very different from the what he was getting opportunities for at school. Attempting to explain that this would actually help this "difficult" child to feel understood and begin to develop a sense of belonging and safety, increasing the chance of him settling in.

I was exhausted, emotionally, mentally and physically. I had nothing left in the tank and was running on empty, but there was no end in sight.

This was not the only major happening in my life at that time, but it is the only experience I seem to be stuck with, and unable to shake in totality. It is certainly not something I dwell on, with the nightmares always coming as a surprise with no known trigger. While I am mindful to generally avoid the local shops at certain times of the day, on occasions I get caught off guard and my physical response to seeing families from school is immediate - tightening of the chest and internal panic. Maybe a quick polite hello, then head down, walk past, get whatever I went to do over with quickly and get out.

Sadly, while not in the forefront of my mind, these responses seem to lurk very close to the surface. Just having seen a child that links to the people involved in these experiences at the supermarket in the local city has resulted in hypervigilance, watching out in case I bump into an actual staff member outside of school hours. Needless to say, the school grounds and the park next door, and in actual fact, the footpaths anywhere near the school, are places I still avoid like the plague! A parent suggested recently that we go play there one afternoon and within minutes I felt like someone was trying to squeeze the breath out of me. Frustratingly, just driving past on my way to town still elicits a physical and emotional response on some days even though I go that way often.

With a failure to kick these responses through interventions such as journaling, counseling, anti-anxiety medication, excercise, mindfulness and a multitude of other approaches, I am left contemplating the likeness of these experiences to the description and causes of Complex PTSD (Post Traumatic Stress Disorder).

"Complex PTSD is a psychological stress injury which may develop in childhood or adulthood. It results from ongoing or repeated interpersonal trauma (e.g., emotional/sexual/physical abuse; neglect/abandonment; domestic violence), over which the child or adult has little or no control, and from which there is no real or perceived hope of escape". It is considered...""a normal instinctual response" to ongoing exposure to trauma. CPTSD is a stress disorder, not a weakness or defect of character" (Out of the Storm, n.d.). Some of the symptoms are:

  • Re-experiencing the past – in the form of nightmares and flashbacks. While in PTSD flashbacks tend to be visual, in CPTSD they are often emotional. That is, a sudden, overwhelming rush of emotions such as anger, shame, humiliation, abandonment, and of being small and powerless much like a child would feel when abused. These are referred to as Emotional Flashbacks (EFs). and can last for minutes, hours or even days (Walker, 2013) .
  • Sense of threat - constantly on guard or hypervigilant, strong startle reaction
  • Avoidance - of thoughts, feelings, people, places, activities relating to the trauma (e.g., dissociation, derealization)

Any form of chronic stress has serious health consequences, which adversely affect mental health, as well as the "immune, cardiovascular, neuroendocrine and central nervous systems" (American Psychological Association, 2017). One can only assume that the nature and extent of Complex PTSD exacerbates these effects.

While the notion of Complex Post Traumatic Stress Disorder may seem extreme as a response to school challenges, the very fact that research has shown ongoing stress experienced as a parent of a child with special needs can result in serious consequences to health and wellbeing, tends to suggest PTSD is in fact, a very real possibility in light of the circumstances.

Mailick-Seltzer, Greenberg, Hong, Smith, Almeida, Coe and Stawski (2010) studied the cortisol response indicative of stress, in mothers of young people with ASD (Autism Spectrum Disorder) who displayed difficult behaviours. It was shown that these mothers "present with the physiological profile characteristic of individuals experiencing chronic stress" with reference being made to the similarities in profile to the findings from groups "including parents of children with cancer, combat soldiers, Holocaust survivors, and individuals suffering PTSD" (p. 26). The experience of this can be likened to the experience of burn-out, something more readily considered in light of high-demand employment situations, but which you may be able to better identify with.

It was determined that "...the rate of maladaptive behavior is a predictor of parental psychological wellbeing...the predicatability of child maladaptive behavior has been found to be an important determinant of stress in coping in parents, with less predictability associated with higher levels of stress , greater reliance on emotion-focused rather than problem-focused coping, and higher rates of depressive symptamology in parents" (Abbeduto, L., Mailick-Seltzer, M., Shattuck, P., Wyngaarden Krauss, M., Orsmond, G., & Murphy, M., 2004, p.239).

In reading this I could not help but draw parallels to my experience, whereby the behaviour of my child was unpredictable as were the responses of the school, and the rate of behaviour was high resulting in a lot of contact with the school under less than desirable circumstances. I was constantly hypervigilant for the time that he was there, even going so far as to request that no one close to me ring me during the school day because each time the phone rang I had a rush of adrenaline in the expectation that it was school ringing.

Until we can practice compassion and empathy for one another and begin to see through another's perspective and respond accordingly, we all lose.

Adding to this was the constant awareness of potential impending exclusion and what impact this would have on future access to schooling for my son, not to mention the actual process of exclusion itself which is extremely challenging and a real test of stamina and cool. It is recognised that "The experience of exclusion can be devastating for children and young people, and may lead to lifelong disadvantage. It also carries heavy emotional and practical costs for families of children with SEND (Special Education Needs); an additional burden on those who might already be struggling to cope. These are impacts that teachers may never become aware of once the “problem” has been removed from the school" (TES, 2016).

And herein lies the point of my ramblings. I do not share these experiences for my own self (in fact it took some courage to put all this out there), but rather to highlight the potential impact advocacy processes have on families. Those working in schools with students and families need to be mindful of the impact their approaches have, not only on the children they are working with, but also the adults advocating for these children. Furthermore, there needs to be an appreciation that it is very difficult to support and/or heal a child if those closest to the child are themselves in need of healing. At the most basic level, it is in the best interests of the child for all involved in their education and support, to be treated with openness, understanding, compassion, care, respect and responsiveness.

My request is simple.

If you work with children and families, bring empathy and compassion to all that you do.

As the Dalai Lama said, “If you want others to be happy, practice compassion. If you want to be happy, practice compassion.”
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