Disability Parenting & Divorce: Should I Stay or Should I Go?

Hi, it’s Kim and that’s me up in the hot-air balloon flying over the Sonoran Desert. It was a bucket list adventure marking a major life event: Divorce.

One month shy of our 28th wedding anniversary (31 years together), Chris and I amicably parted ways. In 2009 I got sick with a serious autoimmune disease and I thought my life was, literally, over. Thankfully, I found a great rheumatologist who improved my quality of life but fatigue, malaise, and the ongoing cost of treatment took a huge toll on our relationship.

Then in 2012, when our youngest son Kai was ten, a retinal specialist diagnosed him with progressive sight loss. We were overwhelmed, grieving and ignorant of disability models (medical/social). Over time, we realized that the social model of disability felt right to us. We believed that the difficulties encountered were not because of my illness or Kai’s blindness, but because of the lack of accessibility and social support for disabled individuals. If you are new to all this, I highly recommend Emily Ladau’s book, Demystifying Disability.

We quickly found out that advocating for a blind child’s education is a challenge. Blindness is rare and certified teachers of the visually impaired are in short supply (and underpaid). Plus, school administrators don’t want to allocate their budgets to pay for braille or assistive technology for a single student. They’d prefer to use funds for something that multiple students will utilize. So, I used my extremely limited energy to hold our rural school district accountable to providing appropriate accommodations. (I fought like hell.)

My goal: To ensure that Kai had access to materials at the same time as his peers.

To be clear, there were other marital issues but the stress of my own disability and the complexities of disability parenting were major stressors. Thankfully, both my boys (Cash & Kai) are happy, independent adults now and I can focus on my own health, wellness, dreams, and goals.

So as an aspiring author I embraced Nora Ephron’s words, “Everything is copy” and publicly committed to unpacking the research about the 87% divorce rate between parents of disabled kids. I read primary research, personal essays, articles and listened to podcasts and then…

I froze.

The judge had just signed off on our divorce a month ago so it’s a fresh wound. Whenever I tried to synthesize what I had learned from my research and put it in to words on the page my brain scrambled. I’d stare at the screen for a while, then take my ‘best-est fur friend’ for a long walk. Below is his picture, because IMHO cute dogs reduce stress.

Eventually I decided to ask our community members for help. They shared the factors that caused stress in their marital relationships. These two quotes sum them all up nicely:  

“…really happy you are covering disability and divorce. So many people chalk it up to ‘well, disabled kids are such a burden it’s no wonder the marriage fell apart.’ We really need to have a conversation about how to better support parents and families.”  ~ @MarissaNiss

“…acceptance or lack thereof that extends to grandparents, aunts, uncles, etc., can also cause tensions and frustrations within a marriage.” ~ anonymous

Our followers named these factors:

• Differing coping styles
• Stress of being the primary caregiver
• Stress of being the only bread-winner
• One partner shutting down and not participating in parenting
• Denial of child’s blindness
• Partner turning to drugs or alcohol
• Lack of local services
• Guilt (for passing on a genetic disease)
• Internalized ableism
• Lack of effective communication
• Lack of time together
• Lack of family support
• Lack of community support
• Finances
• Loneliness (no longer relating to friends/family)
• Exhaustion
• Demands of educational advocacy
• Demands of medical advocacy
• Political climate
• Limited time off work
• Disagreements about integrating tools/learning blindness skills

Relatable, right?!

Also, there’s been a conversation on our Facebook page in which several people shared their disability related marital challenges and successes. You can find that post by clicking here.

So, time passed, and the community contributed, and finally, I was able to do the work. What I found is frankly UNBELIEVABLE!

The statistic that I posted in my first Instagram post on this topic, the stat that Google served up, the stat that was published in Psychology Today (and many other outlets), the statistic that everyone bellows from the freaking rooftops is FALSE!

There is no primary research that supports the much touted and discouraging 87% divorce rate between parents of disabled kids.

None.

Zilch.

Nada.

In fact, there’s very little research on this topic and what exists comes from relatively small population samples and is contradictory. Here’s a sample:

1. Kennedy Krieger Institute Study on Autism and Divorce

The researchers found that 64% of children with an autism spectrum disorder (ASD) had married parents, compared to 65% of children without ASD. This indicates that having a child with autism does not significantly affect the likelihood of parental divorce.

2. University of Wisconsin Study on Developmental Disabilities and Family Size

The researchers found that among couples with children without disabilities, the risk of divorce increased with each additional child. In contrast, for parents of children with developmental disabilities, the risk of divorce remained unchanged regardless of family size.

3. Vanderbilt University Study on Down Syndrome

The researchers found that families raising a child with Down syndrome had a divorce rate of 7.6%, which was lower than the 10.8% rate among families with non-disabled children and the 11.25% rate among families with children with other birth defects.

4. Study on Autism Spectrum Disorder and Divorce Timing

The researchers found that 23.5% of parents of children with ASD experienced divorce, compared to 13.8% in the comparison group. The divorce rate among parents of children with ASD remained high throughout the child’s adolescence and early adulthood, whereas it decreased after the child’s early years in the comparison group.

“Who cares about the numbers? My relationship is stressed to the MAX!”

If you feel this way, I encourage you to listen to ‘The Rare Life Podcast’ episode 156 titled, Should I get a divorce? Insight and Solidarity from Divorced Medically Complex Parents with host Madeline Cheney and guest therapist Amanda Griffith-Atkins. Click here to listen. I found their coverage of this topic to be heartfelt, nuanced, and validating.

The good news is that many couples have found ways to overcome these issues through honest communication, therapy, and/or community and familial support. (Obviously, both partners need to do the work of reconciliation.) Whether you are committed to working things out or have made the decision to separate, I hope it helps to know that:

The odds are not against you.

You are not alone.

Your feelings are valid and the issues are hard and real.

If you need a bit more support to create a relationship that feeds your soul or to accept the fact that it’s time to part ways, check out this article in The Divorce Magazine featuring Brene Brown talking about vulnerability and toxic shame.

Or consider what follower Sally Jane Smith shared on our Instagram page:

“A friend of mine recently said something to me after his second divorce. He said he didn’t have two failed marriages – he had two successful partnerships. One had lasted more than a decade, the other more than two. Each had brought beautiful children into the world, and ended (more-or-less) amicably. Without negating the pain of a divorce, I thought this was a lovely, alternative way of thinking about it.”

Please join the conversation by sharing your thoughts in the comments section below or on our social media pages. And, if you need support, please check out our resources page.

I’ll end this series by saying, I’m at peace with my decision to divorce and I’m feeling hopeful about the next phase of my life.

I wish you the absolute best.