How Families Can Find Emotional Support

Each one of us finds support in our own way. Just as every child with special needs is unique, so too is each parent, family member and caregiver. We have gathered together a small number of support resources in hopes of sharing a few different ways that families have accessed and received emotional support.

Selected Essays About the Emotions That Can Be Experienced When Parenting a Child with Special Needs:

Common Bonds: The Experience of Parenting a Child with Special Health Care Needs
By Meg Commeau, Parent of a child with special health care needs and Director of Family-Centered Care at Children's Hospital Boston

Welcome to Holland
By Emily Perl Kingsley, Parent of a child with special needs, and writer for Sesame Street © 1987

Bewildering Times
Excerpt from Hope for the Families: New Directions for Parents of Persons With Retardation and Other Disabilities, By Robert Perske © 1981. Published by Abingdon Press.

Organizations & Support Groups:
These are a few organizations that provide support to parents and siblings of children with special needs. Some organizations may provide one-to-one peer matching, involvement in ongoing support groups or periodic social or educational gatherings. There may be many other support groups in your local community. Ask your child's health care providers, teacher or other parents about support groups in your area. Your local health department, hospital or community center may also have suggestions.

Fathers Network http://www.fathersnetwork.org/
Serves fathers and families of children with special needs. Includes resources, support groups, and newsletters.

State Parent to Parent Programshttp://www.familyvillage.wisc.edu/cof_p2p.htm
Washington State Parent to Parent http://www.arcwa.org/contact_p2p.htm
Helps parents who have a child with special needs make connections with other parents whose children have a similar condition. Provides emotional support, resources, information and activities.

Sibling Support Project http://www.thearc.org/siblingsupport/
The Sibling Support Project is a national project for brothers and sisters of people with special needs. Sibshops are workshops that provide peer support for siblings ages six to 13. SibKids and SibNet are free email listservs.

Finding diagnosis specific organizations

Family Village http://www.familyvillage.wisc.edu/
Click on “Library” to look up your the child’s specific diagnosis. You will find contact information and descriptions of national associations and networks related to your child’s diagnosis. These resources may lead to local contacts for support.

NORD - National Organization for Rare Disorders http://www.rarediseases.org/
Click on “Organizational Database” - Search by your child's diagnosis or the name of a support organization to find a support group or other source of help.

Books:
There are many books on living with and parenting a child with special needs. Here are few book lists and places to find books. Local parent support organizations may have lending libraries or try visiting your local library.

Bibliography Regarding Families and Children with Special Needs from the Fathers Network http://www.fathersnetwork.org/899.html

Books on Parenting Children with Special Needs or Disabilities from Children's Disability Information http://www.childrensdisabilities.info/parenting/spec-books.html

Woodbine House Publisher of Books on Disabilities http://www.woodbinehouse.com/

Find a Public Library in the US http://lists.webjunction.org/libweb/Public_main.html
two parents talking

Online Support:
The internet has been described by families as both very helpful and sometimes overwhelming. Here are a few national websites for connecting with others for support via listserves, bulletin boards and chat rooms. There may also be local listservs for your community.

Family Village Discussion Boards Related to Special Needs http://everard.waisman.wisc.edu/fv/discussion/boards.asp

List of listservs related to children with special needs http://www.childrensdisabilities.info/speclists.html

Our Kids - listserv and bulletin board for more than 800 families of children with special needs http://www.our-kids.org/

When You Need More Help:
There may come a time when your usual ways of coping are not enough and you want to seek the help of a professional. There are a variety of providers to whom you can turn, such as therapists, counselors, doctors, social workers, clergy or spiritual leaders. Friends, physicians and members of your support community can often be your best resources for recommendations. Here are a few additional tips.

Types of Mental Health Providers
http://www.mayoclinic.com/printinvoker.cfm?objectid=549B34CB-C4FD-45AB-8616378D0AB4F56B MayoClinic.com

Mental Health Professionals: Who They are and How to Find One
http://www.nami.org/Content/ContentGroups/Helpline1/ Mental_Health_Professionals_Who_They_Are_and_How_to_Find_One.htm

Choosing the Right Mental Health Therapist
http://mentalhealth.samhsa.gov/publications/allpubs/ken98-0046/default.asp

Last modified: 4/3/07