A needed discussion

A few weeks ago, I took part in a roundtable discussion with a group of disabled parents. The group included four moms and one dad, with our kids ranging from six months to 22 years old. Everyone in the group had a form of Muscular Dystrophy, with varying degrees of disabilities.

A group like this is all I ever wanted as a disabled parent. I was thrilled that the Muscular Dystrophy Association brought this group together for such a meaningful discussion. We spoke for about two hours, but it would have been easy to continue for a couple more. We were all in need of this level of connection.

Each of us was able to share our perspectives on a variety of diverse ways that parenting with a disability has shaped our parenting and our families. It was interesting to hear all our similarities, and the unique ways that we adapt as parents with disabilities.

The consensus was that we need more of these types of groups. Information for disabled people who want to become parents can be sparse.

Although my kids are in college now, it was comforting to hear the younger parents speak. It confirmed that the feelings I had when my kids were little were real and that I did a lot of things right.

As the person in the group who has the oldest kids, I was able to share a lot of my perspective with the various stages of my kid’s lives. I could see the relief in the face of the young mom with the six-month-old as I spoke about the physical strain easing as they got older. That absolutely filled my heart with joy to know I was able to share some insight with her. That she had a renewed confidence in herself.

I also really valued the disabled father’s perspective. As a dad, he had some different feelings and challenges than the moms in the group. We all agreed while we were glad to have him join us, it would also be helpful to start a group for dads with Muscular Dystrophy.

We all got somber when we talked about the disconnect with other parents at our kid’s schools. We agreed that it can be intimidating to be the only disabled parent at school functions, and that those functions are often not accessible. This only adds to the disconnect.

For me, the most powerful part of the discussion was hearing about how our kids have such a powerful example of daily perseverance living alongside of hardship. They also get a unique perspective on how a spouse responds to disability as well, and a front row seat to the invaluable role of a caregiver.

There was discussion of how there can be difficult periods with our children as they deal with the social stigma from their peers. On the other side of that, our children learn how to answer tough questions as well as invaluable lessons in resiliency.

Though none of us had met before the day of the discussion, there was a preexisting bond that held us together. Many of our difficulties unspoken but understood. It was a no judgement zone. We did not have to prove to one another that we are worthy of the title of “parent.”

There are added pressures to “prove” ourselves when parenting with a disability. Society often does not give us the benefit of the doubt. Incorrect assumptions that we are “unfit” often cloud our own realities, leaving us to question once again, “am I good enough?”

We strive to get it right, but the truth is, perfect parents do not exist. Sharing a snapshot of the different challenges of parenting with a disability is my way of saying that there is more than one way to love and care for a child.

Proving that different paths can lead one to profound love.

My children have both told me in ways of their own, that their favorite part about our family and the deepest life lessons they have learned have been because of my disability, as well as watching the love and care shown to me by their dad.

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, freelance writer, wife, and mom of two boys. She is the recipient of the Reporter’s Winter 2025 Ink-Stained Wretch award. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.