Dads Who Have Children with Special Health Care Needs – How to be of Help, Part 1

National Fatherhood Initiative’s (NFI) mission is to help organizations and communities engage fathers in their children’s lives.  The Washington State Dad Affiliates work with a subset of those fathers: dads who have a child with special health care needs.

Children and youth with special health care needs are defined by the U.S. Maternal and Child Health Care Bureaus those who “have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.”  The Bureau states that 20% of U.S. children under the age of 18 years of age have a special health care need and that one in five U.S. families have a child with a special health care need.

This means that there are a lot of men out there who are the dads of these children.  Many of their needs are the same as any other dad but some needs are different.

To help practitioners work with these dads NFI has asked us to write this guest blog and offer some tips for working with dads who have children with special health care needs. We would love to hear from you with your thoughts about these tips or additional tips that you have. And, if you have a program that supports dads who have children with special needs we’d very much like to be in touch.  If you’d like to contact us please email Louis Mendoza, of the Washington State Fathers Network, at louis.mendoza@kindering.org.

One last thing before you continue reading. We realize that there are many different types of family structures but for the sake of simplicity, the language below leans more toward the traditional family model. In most cases the tips will still apply to dads in other family structures.

The Washington State Dad Affiliates is currently made up of the following organizations:

• Dads Appreciating Down Syndrome
• Dads Move
• Olympia/Shelton Dad’s Support Group
• Southwest Washington Men’s Autism Support Group
• Washington Dads
• Washington State Fathers Network

 Tips 1-5: How to work with fathers who have children with special health care needs.

1. Be Aware That Dad May Feel That No One Understands What He’s Going Through
   Stereotypically speaking, men are not as likely as women to reach out to their social network for support (emotional, logistical or otherwise). When a dad has a child with special health care needs, especially when the diagnosis is new, the need for support can be very important. But, if their male mindset makes it difficult to reach out the dad can begin to feel isolated. This isolation can be intensified if he withdraws from conversations about children with other male friends, neighbors and co-workers because he feels that his child isn’t doing or can’t do what the other kids are doing. This lack of seeking support and withdrawing from talking about his child can lead to a feeling that no one understands what he’s going through and that he’s in this by himself.
   
   
2. Help Him Connect with Other Dads
   For a dad who feels that “he’s in this by himself”, it can be a powerful experience to find other dads who have or are going through similar experiences with their family and “get it”. Whether it’s in a support group setting or through social activities, making a connection to other dads offers the opportunity to get advice, learn about resources, ask questions, express frustrations, and share moments of joy. Help them find father-driven support groups and if there aren’t any locally consider starting one.
   
   
3. You May Need to be Extra Patient 
   Men often hold in their emotions so it can be difficult to understand how they’re feeling about or coping with having a child with special health care needs.  As a practitioner, teacher, or service provider this situation may require some additional patience on your part to learn what, if any, issues need to be addressed and how best to proceed with any given dad.
   
   
4. Objectively Evaluate the Services You Provide to Determine How Welcoming You Are of Dads
   Most programs and services that assist families of children with special health care needs tend to be female driven and centered. This is the result of years of moms being the ones who interacted with schools, doctors, therapists and social service providers.   Today, more and more dads are taking on some of those “traditional” mom roles.  So, look at how welcoming you are of dads by looking at things like program names, wording in communications, who communications go to, etc. 
   
   
5. Keep Individual and Cultural Differences in Mind 
   There is a broad spectrum of acceptance among men regarding their child with special health care needs. Additionally, acceptance will vary among communities of color and immigrant communities.  Always question whether your perspective on the situation and the needs of the dad and/or child agree with how dad sees things.  If differences are due to cultural perspectives and you’re not familiar with the culture seek help from someone who has that understanding.

Part two of this blog series can be found here.