Jun 19 • 15M

Medical Fatherhood: What are the unique challenges for dads of disabled kids?

From 'male rage' to how to feel about service, dads have unique struggles to navigate

 
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“His heart is too full, and no words to release it.” ― Gabrielle Zevin, The Storied Life of A.J. Fikry

A large male hand covers the head of a very tiny baby. The baby has an eye cover, an oxygen tube and a heart rate monitor patch.
Photo by Jessie Kirk Photography

I try to bring you quality news sources and research, dear reader, but this week I’m stumped. I looked for information specific to fathers of disabled children and found almost nothing.

There are several unique challenges for fathers in my community: increased isolation; difficulty discussing caregiver tasks; the paltry amount of resources geared towards stay-at-home dads; a sense of feeling “trapped” in a job due to the enormous pressure to provide economic stability to a family with a disabled child. In addition, a child’s disability can challenge core assumptions about masculinity: the need to perform caregiving tasks that may feel “feminine” or simply too boring; an outsized frustration with behavioral disabilities and the societal expectation that fathers can get their kids to “act right”; the disappointment at the loss of imagined sporting events or other active play. Some of these don’t have to be gendered concerns and many are simply extreme examples of typical parenting stresses, but they do seem to be common anecdotes.

A search of the National Institutes of Health’s database revealed very little data on this population. One study made a passing reference to a Canadian father who was so overwhelmed by the prospect of caregiving, that he killed his disabled daughter. Yikes.

So, as I do when research is lacking, I took to Google. Since the general population still overwhelmingly uses the terms “special needs mom” and “special needs dad,” — rather than my preferred terms of “medical mom” or “medical dad” — I did a Google News search for those terms. “Special needs mom” had dozens of recent stories. “Special needs dad” had just three, only one of which I thought was actually relevant: a story from 2020 about a Birmingham, Ala., dads’ support group.

This lack of news and information is a problem.

I think we all know that as a group, women are disproportionately impacted by caregiving needs. Mothers’ income, health and stress levels are usually more impacted than fathers’ by the birth of a child with a disability. [1] But this generation of fathers, as a group, are more involved in day-to-day caregiving than their forefathers. [2] The stresses and impacts to their lives and identities when they become fathers of disabled children needs to be seriously evaluated and supported.

One literature review I was able to find, from the Journal of Early and Intensive Behavior Intervention, said it’s crucial that fathers have support and learn to accept their child’s disabilities.

… for fathers, acceptance of the child with the disability and family harmony reduced stress. While mothers were also affected by family harmony, lower socio-economic status and greater care demands predicted stress. These differences may represent important differences in the way practitioners should intervene with mothers versus fathers. Further research is needed to better understand what contributes to maternal and paternal stress.

Further research is needed.

I don’t have the power to do that, but I do know three very rad dads with wisdom to share:

My brother, Thaddeus Moore, is the father to a child with a rare genetic disorder. He finds that when they go out together, the world largely ignores them. He isn’t sure if that’s because his son has a visible disability or because the world just doesn’t see and acknowledge fathers, or both.

“You’re kind of in your own little bubble,” Thaddeus said. “They don’t really want to include us in what’s happening most of the time.”

My dad, Terry Moore, is not a medical dad but even so he said it was difficult for him to get the support he needed as a father.

“I didn’t think you could get a group of men together who didn’t talk about sports and cars,” he said.

After pressure from my mom, he joined a support group in the 1990s and he’s glad he did. More than three decades later, he still meets regularly with his “men’s group.” These days they meet every other week on Zoom. He says it has been cathartic to have those relationships, but acknowledged the fear factor in initiating or attending a group like that.

“It’s a tough ball to get rolling,” Terry said.

My brother agreed. “As a man, it’s really hard to build up your manhood and it’s a real easy thing to lose.” Men can’t show weakness, he explained, and reaching out to your community or showing emotions is often seen as a form of weakness.

The one exception?

“Male rage,” my dad called it. Anger is one of the few emotions men feel allowed to express in our mainstream culture.

“Early on we pick up the cue that that’s how we’re supposed to express ourselves,” Thaddeus said. He added that the way he has gotten to the point of being able to talk about his emotions is through trauma-informed therapy.

“Everybody needs to be in therapy, man,” Thaddeus said. “I wish mental health stuff was free for people.”

My husband is also a medical dad, obviously. Matt Millard said he tries to think about anger as just being fear in disguise.

“I try to share with (my son) the fear that I feel instead of the anger that I feel,” he said. “If I think that it has an opportunity to teach him a lesson, I’m not afraid to show him those emotions.”

Matt said it took him many years to accept his role as a father and what it meant, but now he is happier for it.

“The hardest part of becoming a father was realizing it’s not about me,” he said. “I think the ‘traditional male role’ — one of the parts of it that has value is that you are the ‘sacrifice.’”

(You know, like in a war. I feel like I should mention that any comparison of our house to a war zone is purely metaphorical….)

“Every military person knows that there is incredible honor in service,” Matt said, “and the same is true for children. We don’t own these children, we serve them. Something that my culture and my upbringing didn’t prepare me for is how to be a servant — how to not feel like a slave when I am a servant.”

Matt said his years living in Japan gave him examples of service to a higher good that he models his life after now.

“Before I truly embraced it, I frequently had anxiety and depression, maybe even so far as disassociation — very upsetting experiences,” he said. “But ever since the purpose of my life became located outside my own body and my pleasure, my life has made much more sense.”

Designing a life around one’s own immediate wants and desires is empty and fragile, he said. But through fatherhood, Matt learned living a life in service to something outside of himself means that any temporary setback doesn’t change his purpose or identity.

“If I could teach any lesson to any human — certainly to my children — it would be that the earlier you find your purpose, the happier you’ll be,” he said.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Disability Scoop: “Biden Administration Gives States More Time To Spend Disability Services Funds

States will get extra time to spend billions of federal dollars aimed at bolstering the beleaguered Medicaid home and community-based services system after it took longer than expected for the money to make it their way.

The U.S. Department of Health and Human Services is giving states an additional year to use funds that were made available for home and community-based services as part of the American Rescue Plan, a $1.9 trillion pandemic relief package signed in 2021. The cash infusion was intended to address pressures on the nation’s disability services system that were exacerbated by the pandemic, chiefly a long-simmering workforce crisis.

• From TODAY: “I’m a working mom and my 4-year-old son’s full-time medical caregiver. Here’s what life is like

[…]Being his mom — and his Medical Mom — is my favorite thing in the world.

It is the singular role at which I am my best self. I must be at my best — always. Caregiving requires it.

And yet, I still recognize the me that exists beyond motherhood, and beyond even medical motherhood.

I am a woman, a wife, a daughter, a sister, a pet owner, an activist, a philanthropist, an academic, a community volunteer — and also, of course, a medical mom.

Moms can be many things, certainly, extending far beyond their parental status.

However, becoming a Medical Mom and a Family Caregiver of a child with disabilities has meant fighting like hell to remember that I am that multitude. It means fighting to maintain my own identity outside of caregiving, beyond the boundaries of my role as a Medical Mom. It means fighting for the space in my day to pursue my own interests and follow my own passions, while also being everything my child needs me to be at all times.

• From The Jerusalem Post: “Overcoming bureaucracy to help people with disabilities

So, how many bureaucratic processes is a family with a child with special needs required to undergo in order to receive basic services? 

Unfortunately, when it comes to examining how the state provides a solution to about 330,000 families in Israel for children with disabilities, it is important to examine precisely this question.

True, if anyone were to look at the laws in the State of Israel, he/she would be overwhelmed.

[…] Because our bureaucracy in Israel is unmanageable, and in the cases of families with children with disabilities, it becomes a long and disheartening journey in a system that lacks professional logic, is divided among many bodies and is cumbersome. Special-needs families quickly realize that even though each body is committed to helping them, in the end they are left alone.


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Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.