Gary Dietz offers insights, resources and support to dads who are raising children with disabilities.
The ‘being a great dad’ lesson book that men are taught from is missing a chapter titled “What if something isn’t the way it was supposed to be?” Beyond the trite admonitions to love and support all children regardless of challenges, a father needs specific information. If your child is born with or later acquires a physical, intellectual, or behavioral disability, you can find materials and community supports about being a great dad. But you’ll have to dig pretty deeply. Most content and support of this type is aimed at mothers.
Equally important is guidance about how we can process feelings and experiences that our peer fathers may never encounter.
Disability is “other” and for someone else to think about. Until it isn’t. We need to prepare for the next step and the long road ahead.
Fathers matter. And fathers of children that experience disability have different needs whether or not they have yet to admit it. They need a place to go to learn how to address and process emotions. In the three scenarios below—and there are hundreds more throughout a family’s life—fathers need to be ready.
At work: Men talk about their children at work. Work pals often do that dad-bragging thing about the many sports and academic accomplishments of their children. Fathers need to learn how to participate in banter in a way that keeps them in the power mix of social networks on the job, yet remains true to his child’s worth. More stories and discussion are needed to address the variety of male experiences at work from flex-time to career paths to emotional needs in the office or on the job site.
New realities: New realities occur at different inflection points in your child’s life when compared with the life of a typically developing child. For example, during the past year I have only had dinner on Wednesday nights with my 13-year-old son. This is not because of my divorce, it’s because he is now enrolled in a residential school for children with disabilities. When the best advice fathers like me receive is “think of it like he went to college early” we need new sources of advice. And new ways to process abrupt family changes and feelings of failing your child.
School and Professional Interactions: Years ago I politely and professionally made a suggestion to my son’s speech therapist that she direct her comments to both parents rather than solely to the mother. A meeting was soon called at the speech therapist’s request with school and agency staff. An all female meeting by the way, except for me. Wagons circled, and I was firmly informed that no sexism existed with this clinician or with this team. (All I wanted was to be spoken to directly!) A father needs support to learn how to calmly process situations like this while continuing to effectively advocate for his child.
As a father of a child with disabilities, I am a big believer in support groups. And there are many support groups. Really good ones. Both online and in-person. But until very recently, for the most part they were led and moderated by and have content by and for women. I can recall numerous times when in an online support group for parents of children with disabilities, a mother made a negative comment about the father of her child. Other mothers jumped in with crass negative generalizations about men, completely disregarding the fact that there were fathers present in the discussion.
We should be ‘big boys’ and handle this reality—mothers do need to vent. I acknowledge that need, but occasionally some mothers fail to remember whether they are participating in a parent support group or a mother’s support group. Please, if you are in an open parent support group, don’t bash other members because of their gender. It’s what women ask for and deserve and it should go both ways.
Men and women both deserve gender specific communities where they can feel safer. Men’s groups are much rarer then women’s, but they do exist. Seek them out and support them.
While there are many options for family counseling, it is often hard to find a family counselor that either has personal experience with or an extensive client base of families that experience special needs. Finding a family counselor that is ready to specifically help a father of a child that experiences disability is almost impossible. If this is a route you want to take be prepared to teach the counselor more than they may teach you. (Which isn’t to say you wouldn’t benefit from an open set of non-judgmental ears.)
One saving grace is the growth of the genetic counselor profession. While these professionals may not be able to address the needs surrounding all disabilities, they are a great resource if the disability has a genetic underpinning or even as a referral resource to other professionals. You can find one in your area through the National Society of Genetic Counselors web site.
Advice columnists often tell you to ask your family doctor or pediatrician. And you should, because every once in a while you find a gem of a GP or specialist who can guide you well. But don’t assume that the first place they send you is the only option you have for advice and guidance. And if the doctor seems dismissive of your concerns or the concerns of your child—find a new doctor, stat!
What about books and articles? It would be nice to have an authentic, fearless source of anecdotes about fathers’ experiences. There are a number of wonderful novel-length first person stories of a family or an individual with a specific disability or challenge. Some of these books are amazing.
However, more than one father has privately told me that reading some of these books has been at least partially counter-productive. Some of them can verge on “father as hero” stories. Then, the reader ended up feeling a bit embarrassed that they too couldn’t have been a “superman” in dealing with challenges. You should take what you can from these novel-length first person stories and don’t compare yourself so literally to someone else.
Any feeling you’ve had about being a father of a child with a disability has probably been felt before. No need for guilt or embarrassment, even if the feeling was way out there. And if someone who hasn’t walked in your shoes is telling you your thoughts or feelings are inappropriate or invalid, ignore them.
Seek out other fathers, a community, and materials that will support you at the level you need. Because you need to be there for your child.
My latest project, called Dads of Disability: Stories for, by, and about Fathers of Children that Experience a Disability, will try to teach new and experienced fathers alike through stories, anecdotes, and even a few poems. They will be written by fathers, female supporters of fathers, and professional supporters of fathers. I invite you to share your story for this book. (Stipends will be paid for submissions that appear in the book. You can learn more about the project and submission guidelines here.)