Trauma Crossroads: Where Disability and Trauma Intersect in Young Children and Families

By Dana Cox, RN, MA

I invite you on a journey to explore where "trauma" and “special needs" in young children and their families intersect. The outcome of this exploration is increased awareness with the goal of building resilience and introducing trauma-responsive supports for families who have young children with a developmental disability, difference, or special health care needs.

Let's define the term “special needs.” This term will include any of the following:

1. Young children who've been identified as having a medical condition and/or a developmental disability, delay, and/or any health condition that requires intervention or specialized services, including mental health services and; 2. Children who have not yet been identified but there are concerns about their health, development or behavior.

Let's define trauma:

I am also going to use the definition of trauma from SAMHSA, that describes “individual trauma can result from an event, a series of events, or set of circumstances that is experienced by the individual as physically or emotionally harmful or life threatening. And that it has lasting adverse effects on the individual's functioning. That includes mental health, physical, social, emotional or spiritual well-being.” I remember the first time I drove to the hospital (where my twins were previously born prematurely and where I was treated for 3 months for a high-risk pregnancy), for a standard follow-up appointment. As I arrived, my heart started beating rapidly, I started getting sweaty, and felt a sense of panic. What I was experiencing was a trauma reminder in my body from the hospital experience during their birth. My brain perceived danger and automatically mobilized a strong physiological response.

Before we explore the 7 Crossroads, it is important to be aware of the Adverse Childhood Experience (ACEs) research which shows that the more adversity a child faces, the greater the odds of developmental delay.

Source: Barth et al (2008). Credit: Center on the Developing Child.

I'd like to present from my personal and professional experience the concept of 7 Crossroads where trauma and the experience of having a young child with special needs might intersect. #1 Many children with “special needs” start their lives in an NICU (neonatal intensive care unit). This includes known stressors for the developing brain that result from the birth and the lifesaving NICU experience. Any stressor that occurs for one member of the family has the potential to disrupt the entire family system. Two common stressors are pain and parental-infant separation.

What can be done? Advocacy and access to trauma informed care and resources are critical. For example, having a universal approach to mental health care and support available. Also even equally important, in my opinion, is the peer-to-peer support. I still remember getting a phone call and being able to talk to a mom who had been where I was, and she was able to help give me concrete ways I could support myself and my family. This also includes integrated discharge planning to early intervention and other systems of support, including mental health, especially as it related to postpartum depression.

Photo Courtesy of: Cox Family

#2 The second intersection is medical traumatic stress. Children who have disabilities commonly have other health and/or medical related issues. These can further contribute to developmental challenges. For young children health, development and learning are instrinsically linked. These things can manifest in chronic and acute issues that require potentially traumatizing hospitalizations, frequent medical appointments, treatments and procedures. Additionally, many procedures involve restraint to ensure that the medical staff can safely do the procedure.

What can be done? Supporting developmentally appropriate preparation for these types of medical treatments, including advocacy for pain relief (pharmacologic and nonpharmacologic) is crucial. Also limiting separation from primary caregivers is important. It also brings up the important role of a Child Life Specialist, if they are available to support the child and family during hospital admissions.

Photo Courtesy of: Cox Family

# 3 Number three intersection is “post-traumatic stress” for parents and caregivers. As described by many parents “there's nothing post traumatic around it, what we're really talking about here is 'chronic stress'." There's been studies that parents have biomarkers for stress, similar to combat soldiers. There's also a known increased rate of depression and anxiety.

What can be done? Advocacy for access to mental health support, instituting “self-care” practices and respite is needed.

Photo: Dana Cox

# 4 Number four is disrupted attachment and bonding. As described above, any of the things we just discussed can disrupt both bonding and attachment. Parents often have to build new dreams as they adapt to their child. They may need to make new meanings and understandings of who their child is and will be. With these perceptions, they may need support to best interpret and engage in interactions with their child.

What can be done? Professionals may need to support these important serve and return interactions necessary for healthy brain development. These disruptions can happen both on the sides of the parent/caregiver, who might be depressed or anxious (for example see the “still face” paradigm), or the child who might not be able to provide typical cues and responses because of their disability.

Photo Courtesy of: Cox Family

#5 Along with these intersections, is number five, issues with belonging and shame. It's not uncommon for parents to feel some source of guilt related to the birth of a child who has developmental differences. All of the “what ifs”, and “could/should haves” can be taxing and draining of the energy needed to move forward. Added to that is the misconceptions our society has on disability. It is also not uncommon for families to experience misguided sympathy or pity particularly from family and friends, instead of empathy which better supports connection. These all relate to our human need for belonging, significance, and inclusion, as opposed to exclusion. Daniel Siegel MD described “the stress for anyone excluded is gigantic... when you are excluded it activates the same part of the brain as if someone was stabbing you with a red hot poker knife, physical pain and social rejection are mediated in this exact same part of the brain.”

What can be done? There's a lot we can do and it includes looking at our own biases of how disability is portrayed in the media. We need to be aware of the importance of inclusive practices in educational systems. IDEA exists and we need to do better to both build and implement inclusive opportunities for all children.

Photo Courtesy of: Cox Family

#6 Number six is the unintended reality of poorly integrated systems of care. Because our systems of public and private health care, education, mental health and developmental services are not integrated, families find themselves “navigating” the maze of multiple systems. These systems all have different ways of understanding disability, different language and terminology and criteria for accessing services. Being a nurse, educator and with English as my primary language, you would think this would be easy, however I frequently “bang my head against the wall” when trying to access and work with these well-intended systems. There was a time my son had 7 case managers assigned to him.

What can be done? When a family has multiple systems they are working with, trying to get the different systems to coordinate and communicate with one another is essential. This will involve the signing of releases to give permission for the different programs to exchange information to better support the families. It also involves educating each "“silo of care”" to better understand the scope of services that families may be eligible for and to ensure that families neither "fall through the cracks" (do not receive needed service) and/or are overwhelmed with supports that are poorly coordinated.

Photo Courtesy of: Cox Family

#7 Research has demonstrated that children with disabilities are two times as likely to experience emotional neglect, physical and/or sexual abuse, they are three times more likely to be in families with domestic violence. If we increase our energy and focus on the other six, the risk of child abuse may be buffered. But the sad truth is child with disabilities are at more risk for child abuse and neglect.

What can be done? We need to build more awareness in promoting resilience. We must remember that the same protective factors that build resilience for all families need to be implemented at an even deeper level for families with a child with special needs. Protective factors will be even more essential with the COVID-19 pandemic. It takes a village and we are all in this together, today as well as tomorrow.

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About Dana Cox: Dana is an RN, a certificated Early Childhood Special Educator, and is endorsed in California as an Infant/Family Early Childhood Mental Health Specialist and Reflective Practice Mentor. Dana credits her 3 adult children and grandchild as her greatest teachers. She can be reached at danarn95060@gmail.com