Resources for Special Needs Parents with Young Children

September 20, 2011
By Andrea Schneider, LCSW, Learning Difficulties Topic Expert Contributor

Last week, I had the honor of attending and speaking at Postpartum Support International’s 25^th 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.

One in 10 children have a disability (neurological, emotional, behavioral, developmental, physical)
Parents of special needs children are more at risk for depression and anxiety
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)
“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.)
Stigma is real and exists, even in the 21^st century. Therefore, family discussions need to happen to address this concern and to build social support networks.
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
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

Americans with Disabilities Act Home Page – Extensive information about the Americans with Disabilities Act
The Arc of the United States – Chapters across U.S. offer information, support, and advocacy for people with developmental disabilities
The Arc’s Information for Siblings – Provides information and training to start sibling support groups
ARCH National Respite Network
Easter Seals Southern California – After-school activities for children with disabilities using public school sites and community settings
Family Voices, Inc. – Offers information, support, advocacy, and workplace information for families of children with special health care needs; many publications available to download for free
Fussy Baby Network – Resources for families with fussy babies
National Alliance for the Mentally Ill (NAMI) – Offers interactive “Special Needs Estate Planning Guidance System”
National Autism Association – Clearinghouse of resources on autism spectrum disorders
National Dissemination Center for Children with Disabilities – Online clearinghouse providing information and links on all matters related to childhood disabilities, resources, laws, research
Sensory Planet – Clearinghouse of information for sensory processing disorders
Sensory Processing Disorder Foundation – Information on sensory processing disorders

Organizational Aids:

Children’s Hospital and Regional Medical Center/Center for Children with Special Needs – Offers “CARE Organizer” (forms to document child’s activities, therapies, medical bills, etc.) and the “CARE Notebook” (an expanding file folder to organize forms)
Children’s Medical Organizer – Online organizer to keep track of family’s medical information, from immunization records to doctor appointments
The National Center of Medical Home Initiatives for Children with Special Needs – Provides links to various types of organizers and health care notebooks
Think College – Has information and searchable database on special college training, courses, and assistance for young adults with disabilities

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:

America On the Move Foundation – Information about healthy-eating and fitness; can register to work toward achieving health goals
American Trails – State-by-state list of trails and greenways, groups, and hiking agencies
Special Olympics – Opportunities for adults and children with intellectual disabilities for sports training and competition
World Laughter Tour – Lists laughter clubs around the U.S. and Canada
Global Family Yoga – Yoga resources for special needs families

Other Materials:

Children with Special Needs and the Workplace: A Guide for Employers by the Center for Child and Adolescent Health Policy at the MassGeneral Hospital for Children
Commonly Asked Questions About Child Care Centers and the Americans with Disabilities Act
A Family Handbook on Future Planning edited by Sharon Davis, PhD
Open Arms: Embracing a Bright Financial Future for You and Your Child with Disabilities and Other Special Needs by Easter Seals Disability Services and the National Endowment for Financial Education

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.

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org.