Currently there is no recognition, within ACEs, of the inherent challenges a child goes through after having been born with a disability such as a congenital facial difference, spina bifida, syndactyly, etc. We (speaking as someone from this group) are quite aware of the following...

1- prenatal test results (such as for Down syndrome) infer a societal disdain for children with congenital differences. How would you feel, knowing that scientists are busy at work designing tests so that if an expectant parent learned their 2 month old fetus had your condition, they’d be offered an abortion? 

2- there’s a tacit view towards mother’s of children with disabilities as eternally giving, yet child abuse/neglect rates for such children are higher than for nondisabled peers. Do you know what it’s like growing up in a home where your birth is blamed for your family’s problems? 

3- research on parent/child interactions between mothers and children with disabilities has looked at the stress of parenting, but nothing on how a child must adjust to living with a disability. Do you know anything re: the emotional journey children must take in figuring out that they will be forever different from others in some way? 

It’s as though society is telling “my people”... “well, of course it’s stressful to your parents!” without even beginning the journey each of us has had to take in growing up within a society that has historically discarded and euthanized babies with differences rather than welcome them in to the world. 

Are we the only vulnerable group whose child abuse/neglect and later PTSD and complex PTSD is of no interest? 

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There's lots of groups who's neglect/abuse and PTSD is of no interest. 

For instance, look at medical harm, or those who have experienced iatrogenic damage in the mental health system. This is one of the worse traumas of all. Yet it is hardly ever mentioned on a list of ACES to screen for.

An ACE is any condition or experience that has the potential to harm a child's development.  There are countless childhood adversities that do not appear on the original list of ten ACEs. For example, if you were kidnapped, witnessed your father kill your brother, battled a brain tumor, or spent time in foster care, none of those experiences would count as an ACE if you only look at the list of ten. 

That is why it is so important to take a complete ACEs history when dealing with individuals.  Thank you, Sandy, for calling attention to yet another source of chronic stress for children and families. 

Debbie

Deborah Bock
Anchorage, Alaska

That’s the whole problem... the WHOLE problem. Taking an inventory ONLY works if one knows what to look for. So it’s nonsensical to think an inventory will find anything for which you arent Looking. 

ACEs are, by default, adverse CHILDHOOD experiences. That means (1) schools and (2) pediatricians need to know what could be traumatizing. And if one has already defined what an ACE is, one only looks for it, assuming there is nothing more. ADDITIONALLY, damage occurs in that very assumption because the missed things only get further mindlessly tossed down the rabbit hole of ignorance.

IATREGENIC DAMAGE IN ***EDUCATION*** THAT LEADS TO ACEs... 

When the ACEs community fails to consider the very real adverse danger to the lives of children born with disabilities, they tacitly contribute to their continued abuse and neglect. They use “well, we can’t include EVERYTHING” when these are the very kids at greatest risk of abuse/neglect from the moment they were born (and, for many, while still in the womb). This absolutely mitigates the good work the group attempts to do, by deliberately deciding congenital disability doesn’t matter any more than any live birth. 

The following pictures (from 1993-1985 materials) show the IATREGENIC DAMAGE in the special education system, when it is assumed that “frozen or rigid facial expression” (among other disabilities listed) is ‘undesirable’. While ACEs weren’t “big” back then, special education had been around almost 20 years. 

 

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I wrote the editor...  Dr. Ann Turnbull (KU)... nationally prominent. To her credit, she replied, and requested permission for my letter to be published in the next edition.

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BUT... the text MISSED THE MARK in “despite these general rules of thumb” (EXCUSE ME.? Something previously regarded IN RESEARCH is now passed on as a stereotype?)

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In a separate course, (“Survey of Physical Disabilities”), I wrote a paper on facial differences. Mind you, the professor and chair of this program had just earned her doctorate, and her dissertation was on the psychosocial aspects of physical disabilities.  SHE HAD NEVER RESEARCHED FACIAL DIFFERENCES. MORE IATREGENIC DAMAGE... her students who become teachers never learn that children born with common birth defects (cleft lip/palate thru Treacher Collins and more) are at higher risk of bullying, child abuse/neglect by parents, classmates and ignorant educators, 

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This is JUST ONE example of IATREGENIC DAMAGE within the very same system touting ACEs. 

Must I assume ACEs only matters when a child has not been born with or acquired a disability? 

 

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In my experience working in the schools and homes and childcare, many children with disabilities are being improperly diagnosed.  Some have ACES by the nature of their home and childhood experiences which impact their brain development. Some are born with a disability that is considered an Adverse Experience for the child and the family and sometimes the child has both!  We need to know the stories of our children and families so we can support them appropriately.  Everyone is vulnerable, some more obvious and some less aware!  

This is an important topic, and issue.

 

 

Sandy: You bring up a lot of great points. What an important discussion.  I'm glad you are here.

I think the original ACE study provides groundbreaking research and data which allows us to consider and talk about childhood adversity - in general, in ways we've not done before as a whole culture. But it's certainly not inclusive of every kind of adversity people experience as children. And if there's too much focus on only the original questions/survey it does skew the conversation in that direction, especially for those not steeped in this work or ACEs science. ACEs science builds upon the original ACEs study/survey but there's lots more we've learned/are learning over the last 20 years. 

For me, the ACE survey/score was a great into. to public health data and looking at things at a population level which I'd not done before, at least not in relation to childhood trauma. And that has helped me to think/consider/hear about/learn and listen to so many others, like you, who have similar as well as different experiences, perspectives, and ACEs. 

Cissy

P.S. This morning, I was just reading a post by Donna Jackson Nakazawa in Parenting with ACEs. She wrote: 

"Other types of childhood adversity include, of course, community violence, poverty, bullying, bickering parents, medical trauma."

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