Handling Grief: Supporting Fathers of Children with Special Needs

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Experts note that parents of children with special needs often experience grief as they struggle to adapt to their situation. There are many different types of grief and fathers should understand that they aren’t going through the “typical” grief process. Parents of children with disabilities go through a period of mourning for the loss of the life with a child they had expected but did not receive. Fatherhood programs have an opportunity to help fathers through this mourning period and understand the grief that they feel.

In her poem “Welcome to Holland,” Emily Perl Kingsley compares the experience to planning a fabulous vacation in one place, but then having to get accustomed to being somewhere very different. She pointed out that “the pain of that will never, ever, ever, ever, go away because the loss of that dream is a very significant loss,” but if you spend your life mourning you may never be free to enjoy the special things about your new destination.

Helping dads cope with their feelings of grief is a healthy step in a father’s journey to accepting the disability and learning how to be an advocate for their child. There are a variety of ways that fatherhood programs can address the grief that fathers feel and engage fathers in discussions on special needs. This page has more information on how your fatherhood program can help fathers of children with special needs cope with their grief and get them connected to helpful resources.

“I just know that when I chose to answer my child’s call to ‘come out and play,’ I began to travel down one of the most rewarding roads I have ever traveled ... I have talked with hundreds of dads. One thing we all have in common is the sense of the loss of the dream we had of what our child may do and be … I have learned to take life at a little slower pace. I understand so much better the stages of development and how each builds on the next. You will hear a lot of us say that our children have made us much better fathers than if we had not experienced this world of disabilities.” -Family Connection of South Carolina

“[There are] two tasks for a family with a new diagnosis: first, you must make a place for the disability in your family; second, you must put the disability in its place.” -Bill Doherty, Professor, University of Minnesota, as quoted in 2013 NRFC webinar

Tips & Best Practices

  • Offer men support to understand and feel they “are not in this alone.” Look for opportunities to connect them with other fathers, particularly those who have had similar experiences. Set up social occasions for fathers to meet, exchange ideas, and promote father involvement with their child. Schedule father-and-child activities that enable fathers to spend time with, and learn from, other dads and their children. Host informal meals or social events to offer a non-threatening environment where men can develop contacts for ongoing support.
  • Use strength-based terms such as “fathers’ network” or “coach” rather than “support group” or “parent support.”
  • Help men recognize that they cannot “fix” health problems or disabilities, but can take action to improve outcomes for their children. For instance, they can learn how to navigate the Medicaid and healthcare systems and take advantage of various tax breaks.
  • Research information on local, state, and national resources; develop partnerships with local organizations that support families with children with special needs; and share relevant information to help fathers with specific issues.
  • Engage dads in activities and discussions that focus on identifying and understanding special needs and learning how to help a child who has challenges.Fathers of children with special needs can benefit from a general fatherhood group, particularly if staff are trained and aware of helpful resources. Fathers’ networks, either in person or online, with fathers in similar situations also can be beneficial for dads with unique needs. Work with local fathers to start a fathers’ network if one does not yet exist in your community for fathers with children with special needs.
  • Encourage fathers to communicate with schools and healthcare providers to avoid feeling like they have to rely on second-hand information from mothers. Additionally, highlight couples communication. Mothers often are at the center of child-related activities, which may contribute to maternal burnout and the father feeling like a student who must learn and take cues from the mother. Couples workshops or counseling may help mothers and fathers share the work and strengthen their bond.
  • Help fathers acknowledge their emotions so they can deal with their grief and strengthen their family relationships.
Spotlight On
Family Connection of South Carolina

Family Connection SC

Family Connection provides support for families of children with special needs in South Carolina. The program organizes family events and provides topical workshops for dads. Since 2003, Family Connection also has trained fathers to work with other fathers as supportive coaches or mentors. The Family Connection Fathers Network supports fathers and families raising children who have developmental delays, disabilities, or chronic illness, and empowers these fathers to be actively engaged in their children’s lives. Learn more in the NRFC July 2013 webinar Working with Dads: Resources and Support for Fathers of Children with Special Needs.

FAQS

How can fatherhood programs help dads cope with their grief?

It is important to encourage fathers and their families to gather as much information on their child’s needs as possible. Teach fathers to ask questions and take notes. Help fathers learn the language of the special needs their child has. Fatherhood programs also have to be a voice of reason for fathers, advising them to take care of themselves in the process of taking care of their families.

What can fathers do to be good advocates for their child?

Fatherhood programs can help dads become good advocates for their children by including themselves in their children’s routines as much as possible. This is one of the best ways to learn about a child’s special needs.

What are some programming suggestions for fatherhood programs looking to support fathers of children with special needs?

Greg Schell, director of Family Information and Education at Family Connection of South Carolina, suggests planning activities that include all family members, where both parents can interact and get advice from other parents of children with special needs, observe family interactions, and experience a fun time that can increase fathers’ confidence in their parenting and relationship abilities. These types of interactions improve family connections while showing fathers that they are not alone in their feelings.

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