Happy Father’s Day!
There’s little research on the role of fathers when it comes to raising children with disabilities. This underrepresentation has meant that most questionnaires about this topic have reflected the mother’s point of view. But that’s changing.
In honor of dads today, I decided to study some of the research that’s out there and give them a round of applause. Being committed to raising children as a dad, trying to do it right, is no easy feat in today’s world. Having a child with disabilities is difficult, but, the research shows, and I’ve learned from knowing some great dads, that for many fathers it’s a rewarding experience where they find great joy!
A recent study in the Journal of Intellectual & Developmental Disability found that mothers and fathers who cared for a child with profound intellectual and multiple disabilities (PIMD) spent more time on caretaking, and needed time for themselves, especially as their child grew older. A support system tailored to the unique needs of their family was recommended.
Moms and dads shared positive and negative experiences raising their child with disabilities, and dads were sometimes more positive than moms. This might be because dads are still likely the breadwinner, and moms are the primary caretakers.
But the researchers found positive characteristics surrounding dads in general with children with PIMD.
Dads of children with disabilities were:
- more spiritual.
- tolerant of differences in other people.
- likely to have improved relationships with their spouses.
- able to prioritize what should be valued in their lives.
- capable of expressing understanding to others.
- especially understanding of other parents with children with disabilities.
One dad described it as “internalizing the disability as a construct of his identity”. He created skillsets to assist his son with cerebral palsy, but he also set borders where he could be his own person. He believed he could better help his child by helping himself with this type of mindset.
It’s especially important that dads be included when considering family interactions with a child who has disabilities. Sometimes dads perceived themselves as socially isolated, and not able to connect with their child. Stress could be a factor with both moms and dads of children with neurodisabilities (no surprise there). Some fathers had depression. But the good news is that fathers could experience a “higher sense of purpose in their lives with this role”.
Repeatedly the research shows that both parents need support on how to co-parent and better understand their coping ability and styles, and how one parent can help the other, and what kind of support is unhelpful.
How do dads do when it comes to the schooling of their child with a disability? One study looked at how dad’s help their children with autism in school. They do what other involved dads do.
They:
- attend meetings.
- participate in school governance.
- volunteer.
- help with schoolwork.
- work with teachers.
- read to their child.
- are patient.
- help their child focus.
Sometimes fathers of children with disabilities are biological dads, stepdads, foster dads, adoptive dads, and sometimes they are divorced or separated dads.
Several research reports found that dads who care about their children no matter the differences or atypical lives, also share something unique and lovely. They’re funny and they like to play! They joke and they see the humor in life. For children this is always welcome.
What’s important is that dads are being included more in these studies in order to determine what will help them raise their children. While they provide support for their families, they need to get the help they need when they need it from the birth of their child to the child’s adulthood. Dads, like moms, want to know that their child and adult child will be cared for in their absence.
So, to all the dads with children who have disabilities and are wonderful, enjoy your day and thank you for being a good dad and knowing that differences are what make us great and better people!
References
Jorien Luijkx, Annette A. J. van der Putten & Carla Vlaskamp. “A valuable burden? The impact of children with profound intellectual and multiple disabilities on family life.” Journal of Intellectual & Developmental Disability, 2019, VOL. 44, NO. 2, 184–189.
Singh, Shailen. “I am who I need to be: reflections on parental identity development from a father of a child with disabilities.” Disability & Society, Jun2019, Vol. 34 Issue 5, p837-841. 5p.
Aline Bogossian, Gillian King, Lucyna M. Lach, Melissa Currie, David Nicholas, Ted McNeill & Michael Saini. “(Unpacking) father involvement in the context of childhood neurodisability research: a scoping review.” Disability and Rehabilitation, 2019. 41:1, 110-124.
Carol Potter. “‘It’s the most important thing – I mean, the schooling’: father involvement in the education of children with autism.” European Journal of Special Needs Education, 2016. Vol. 31, no. 4, 489–505.
Potter, Carol A. “Father involvement in the care, play, and education of children with autism.” Journal of Intellectual & Developmental Disability, Dec2017, Vol. 42, Issue 4.
Thank you, Nancy, for focusing on the important role of fathers in the lives of children with disabilities. I have two examples of extremes from my work years ago as a Parent Guidance teacher, working with the families of toddlers who had been diagnosed with deafness. One father was so upset that his son was deaf that he actually accused his wife of having had an affair and left her. (I had the pleasure of teaching the son many years later, and he was a wonderful young man.) The other was the opposite. The toddler was deaf, as were both parents. The father was participating in the session with me. He was so gentle and affectionate with his adorable daughter. He tried to get her to do something, I don’t remember what at this point. Then he signed to her something like, “Don’t worry. You’ll get it some time.” so relaxed and accepting–I’ve never forgotten them. In many families the role of advocate for the child goes to the mother. Often the mother would attempt to learn sign language, but the father was working and didn’t have the time. If children are fortunate enough to have two parents in their family, the ideal would be for both parents to become informed and to engage fully with their children. I was glad to see that characteristics of fathers with their disabled children were humor and play. All children (all humans really) need this as well.
You’re exactly right, Sheila, that some dads leave. I found it uplifting that those who are committed to staying, however, often create a special bond with their children. The upside is that they are fun. I know you agree that it’s important to find ways to address the needs of families so that they have a quality life. Thank you for sharing your experiences. It’s positive hearing about the dad who was so supportive and hopefully will help other dads.
Thanks, Nancy. Informative as usual. Not having a dad, or having one that is often absent due to work or condition, is a disability in and of itself.