Click Here to read Part One
Admittedly, the past few years since becoming a parent have been very stressful. From not knowing why both my children did not meet key developmental milestones (and the initial helplessness and hopelessness that came with that) to not know how to help them. Because I trust in the guidance of my chi, my question never rests at “Why me?” and quickly moves to “Who else is going through this?” And to my surprise, there are so many families struggling in isolation in what can be a daunting journey to coming to terms with a child’s developmental disability.
In Igbo culture, if a child looks “typically developing” then the only problem with him/her is likely being possessed by an evil spirit, or obanje, that must be prayed on or “disciplined” away. Because children are to be seen and not heard; the grunts, seemingly uncontrollable hyperactivity or temper tantrums are inexcusable offenses that must be corrected by not sparing the rod, so to speak. It’s difficult to convince people that are deeply rooted in a specific understanding around childhood behaviors that what’s happening with your child requires medical attention.
And in this uphill battle to convince the “village”, there are other dysfunctions in the system of care. In my experience, the difference between the Nurse Practitioner (NP) that identified my first son and the Medical Doctor (MD) that wrote my second son’s referral was engagement and support. The NP went above and beyond to make sure that I was supported in my process; and even as I switched to a pediatrician as our primary care provider due to the false thought that this would offer more “professional” support for long term health care needs, she talked me through the pros and cons. I am eternally grateful to the NP that helped identify a provider agency that assigned a caseworker that stayed with my family until my son’s 3rd birthday, when suddenly it all went away. There is so much to say on that transition from Part C to Part B of the IDEA and the role of the medical community to make sure that there aren’t lapse in services, no matter what’s happening within the education system, and I will take time to say it and organize even better than that. But for now, I’ll just say that look forward to more opportunities to engage the medical community and help them understand the difference in care it makes to have an emotionally present healthcare professional.
I have also come to discover that a lack of appropriate support has been detrimental to my own health and well being; and that these high levels of stress have a damaging impact on my children. So, while pressure makes diamonds, apparently it is not so great for brain development. With so many children being born with a variety of sensory processing, impulse/emotional regulation and communication disorders, conditions typically associated with Autism, or other conditions like ADHD that impact the 9 functions of the prefrontal cortex , it appears that, as a whole, the healthcare community in Washington, DC that work in direct service to our children tend to not take seriously the need for early and substantial intervention.
One of my favorite authors and public intellectuals, Gabor Mate, says that what helps children the most through these developmental challenges is emotional closeness with non-stressed, emotionally available adults. The absence of these sorts of people in a child’s a life contributes to why the child is not connecting the necessary brain circuit development that promote positive social relationships and good health. To this end, environment (i.e. school, home, recreational program) is a crucial component to positive brain development, starting in pregnancy and then through the first few years of early childhood development.
According to “Excessive Stress Disrupts the Architecture of the Developing Brain,”, a position paper published by the National Scientific Council on the Developing Child from Harvard University’s Center on the Developing Child, it identifies three types of stress:
- Positive stress: is triggered by meeting new people, dealing with frustration, entering a new environment.
- Tolerable stress: responses that have the potential to negatively affect the architecture in the developing brain, such as conditions like death or serious illness of a loved one, a frightening accident, parental separation, persistent discrimination or other serious life events.
- Toxic stress: the strong, frequent, or prolonged activation of the body’s stress management system, causing chronic, uncontrollable, and/or experienced without access to support from someone caring. This can have adverse effects on the brain architecture and can be caused by chronic abuse, directly and indirectly experienced by the child.
The impact of stress on the parenting environment, resulting in limited support for the parents, starts with pregnant women. Epigentics shows that genes are turned on and off based on environmental factors, thus genetic arguments do not explain the rising rates of children with a variety of Autism spectrum disorders and other developmental disabilities. The Harvard study also shows that significant maternal stress during pregnancy and poor maternal care during infancy, which have little to do with genetic composition, both affect the developing stress systems in young animals and alter genes that are involved in brain development. The conclusion of this study notes that relationships children have with their caregivers play critical roles in regulating stress hormone production during early years of life. The study notes, specifically, that children who grow up in conditions of economic hardship often exhibit elevated stress hormone levels.
The significance of Georgetown’s CoP is that we address the the cultural dimensions that inform this form of isolation that are faced by many oppressed people, including individuals with disabilities and the families who care for them. Together as a community of those in dedicated service to our families, and in community with many other cities throughout the United States, we are taking on the positive stress to transform systems to eliminate the toxic stresses that are literally altering the architecture of brain development in our children. Being a part of Georgetown’s CoP and through other efforts with our Coalition and through the network of parent-supported organizations, these offer positive outlets to explore ways to support my family and in support of other families struggling to find a balance and reduce stress for the benefit of our children.
And, because I didn’t grow up with a cultural awareness that readily prepares me to prioritize managing my stress levels in order to show up as a better, emotionally present parent for my children, I choose to adopt a new culture.