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Layers: A Mother’s Perspective on Raising Special Needs Children Using the Life Course Framework

By Kris Green
Title V Parent Services Manager and parent to four sons in Anchorage, Alaska

I started with a query to Google, looking for framework to the MCH Life Course Model. From Dr. van Dyck’s preface Rethinking MCH: The Life Course Model as an Organizing Framework1 – the following statement seemed to jump off the page – giving me an image to describe this journey so many of us are on with our special needs children.

He writes, “By combining a focus on health equity and social determinants…life course offers a rich and layered understanding of how health develops over a life time and across generations.” It is the words “layered understanding” that give title to this journey.

Perhaps some of you may jump to that image of an onion with layers being peeled away to explore the complexity of parenting a special needs child across a life span. However, that is not what I am suggesting with the layer metaphor. The Life Course Model, as a path to health and wholeness for families with special needs children is less about peeling away each layer and more about building on the layers of strengths and possibilities. It is the very challenges that our complex children overcome that serve as another layer or hopeful step closer to a future bright with good health and options in adulthood.

The Life Course Model recognizes that many factors contribute to health across the life span. The four core concepts are: timeline, timing, environment and equity. My children’s experiences during milestone stages of early years, adolescence, and now adulthood are very different than the normally developing child; and despite their challenges, I have the same boundless hopes and dreams of a healthy tomorrow for my children. Like other families nationwide with children experiencing special needs, the task is daunting, and yet for many, out of love for our children and the desire for them to reach their full potential, it can be an inspiring journey.

Critical pathways to health are either built or diminished over the life course. For my children, the critical nature of a premature birth and admission to a NICU put them on the path (a foundational layer) of developmental delays, therapies, and life-saving interventions. A deeply troubling traumatic experience in their early adolescence added a PTSD layer of behavioral and mental health issues. In adulthood, they are now affected by choices made in early adolescence; yet each successful step to overcoming the challenges gives way to a stronger layer. Yes, early programming and exposure to adverse events in critical periods did have a cumulative effect. However, their life-altering experiences add layers of wisdom and strength beyond their years. My job as a mother is to mitigate the risk factors and help them identify and strengthen the protective factors that will give them the resiliency to reach their full developmental potential.

Parenting children with special needs, using the Life Course Model, is about building a life and future by acknowledging the layers and honoring the uniqueness that it gives our children. It is not running from the fact that some layers are difficult; it is about constructing the best possible future despite the challenges.

The MCH Life Course Model is critically important, especially now. For those of us working and living in the field of parent driven advocacy and action, the community layer is my hope that a bright future exists due to the MCH promise of promoting health and wholeness one person, one family, and one community at a time.

 

1 Health Resources and Services Administration Maternal and Child Health Bureau. Rethinking MCH: The Life Course Model as an Organizing Framework (2010 Concept Paper). http://mchb.hrsa.gov/lifecourse/rethinkingmchlifecourse.pdf. Accessed on Apr. 9, 2014.