Resources for Special Needs Parents with Young Children

September 20th, 2011   |  

Father and son playing with paper airplaneLast week, I had the honor of attending and speaking at Postpartum Support International’s 25th Annual Conference in Seattle, WA. I was moved and inspired by the amazing work gestating and being born in the perinatal world by so many compassionate professionals. (Refresher: “perinatal” refers to the time from conception, through pregnancy, on through the first year after having a baby.)

My dear colleague Gabrielle Kaufman, BC-DMT, NCC and I presented a workshop on special needs parenting as relates to the family experiencing perinatal challenges. Both Gabrielle and I have found in our practices a large number of women and families who are impacted by the double whammy of a perinatal mood/anxiety disorder (PMAD), coupled with parenting a special needs child. We felt it was important to highlight this population of folks who are in great need of resources and support. Although this subject could be an entire week-long conference, we discussed the following highlights that are pertinent for special needs families and the people that support them.

It’s hard to define special needs, as we all are special and we all have challenges. We choose to define special needs as a child in a family system who is experiencing the challenge of a neurological, emotional, behavioral, developmental, or physical disability. This challenge affects the entire family system on several levels.

  1. One in 10 children have a disability (neurological, emotional, behavioral, developmental, physical)
  2. Parents of special needs children are more at risk for depression and anxiety
  3. Couples (parents) of special needs children benefit from support such as psychotherapy and regular date nights (50% or more of all special needs couples divorce)
  4. “Neurotypical” siblings benefit from support in the form of sibling support groups, one-on-one attention from parents, and open-ended discussion of feelings/solutions to concerns associated with being a special needs family (i.e., role-playing how to handle being in public with special needs sibling, preventing parentification, etc.)
  5. Stigma is real and exists, even in the 21st century. Therefore, family discussions need to happen to address this concern and to build social support networks.
  6. Family/couple/individual therapy and support groups were found to be helpful in buffering the effects of stress and lowering depression/anxiety in these family systems in several studies
  7. The special needs family is exposed to chronic stress and therefore requires an ongoing stress management program that will lower the effects of cortisol and adrenaline (the fight or flight response) that develop. For example, self-care, yoga, psychotherapy, respite care, support groups.

Below are some helpful resources we found to be beneficial.

Resources

Organizational Aids:

Books:

  • Baskin, A., & Fawcett, H. (2006). More than a mom: Living a full and balanced life when your child has special needs. Bethesda, MD: Woodbine House.
  • Celebi, J. (2008). Overwhelmed no more!: The complete system for balanced living for parents of children with special needs. Joan Celebi.
  • Domar, A. (2001). Self-nurture: Learning to care for yourself as effectively as you care for everyone else. New York, NY: Penguin Books.
  • Fogel Schneider, E. (2006). Massaging your baby. New York, NY: Square One.
  • Gil, B. (1998). Changed by a child: Companion notes for parents of a child with a disability. Pella, IA: Main Street Books.
  • Meyer, D. (1997). Views from our shoes. Bethesda, MD: Woodbine House.
  • Seligman, M. (2004). Authentic happiness: Using the new positive psychology to realize your potential for lasting fulfillment. New York, NY: Free Press.
  • Seligman, M. (2006). Learned optimism: How to change your mind and your life. New York, NY: Vintage.

Parental Self-Care:

Other Materials:

This list of resources is far from comprehensive, as every day the Web has new sites on the special needs family. We chose to highlight a few websites and books which we found to be helpful for our clients and our practice, as perinatal psychotherapists.