At 19 months years old, after 2 years of contented marriage to my husband, my first-born child was diagnosed with Autism, a permanent and profound brain disorder. Everything my husband and I thought we knew about one another and our relationship shifted the moment we learned of our son’s diagnosis, because here’s the truth: none of this is who we think we are, nor who we appear to be to the outside world. The outside world is not privy to our inner dialogue, secret resentments and jealousies, ruminations about things so absurd we dare not speak them aloud. Nothing proves this more than facing life-altering news. After many more years of parenting our now teenage son together, here are a few things I’ve learned:
1. You don’t truly know your partner until you’ve faced serious adversity together.
In staring down the darkness that became my life in those early months following diagnosis, I looked to my husband for stability. I relied on cues he exhibited during courtship such as vulnerability and tenderness as predictors of his future behavior. But of course those cues were inherently faulty because we were not in crisis when dating, that’s when times were easy and we both put our most appealing foot forward. And so I was predictably disappointed to discover that when storms hit, my spouse did not resemble the man I thought I knew so well, and vice-versa. It wasn’t that he had changed so much as up until this point, we had never been seriously tested.
Marriage strips away our pretenses and leaves us fully exposed before our partner, and if we choose to have children, that accelerates the denuding. To have a disabled child is to ruthlessly activate those sacred vows: “for richer or poorer” (someone has to finance this child’s intensive therapy); “in sickness and in health”, (though neither of us really expected any illness); “for better or worse” (we never dreamed worse could feel this bad). A disabled child expertly exposes truth about both players in ways that can range from heroic, uncomfortable to downright ugly. It was not until my husband and I faced a crucial milestone – that our autistic son at age 5 would never recover or pass for normal – that I realized the enormous strength, grit and unconditional love that my spouse was capable of. I also came to discover that contrary to my initial assumptions and accusations, he was far more accepting of reality than I was–and than I had assumed myself to be.
Marriage strips away our pretenses and leaves us fully exposed before our partner, and if we choose to have children, that accelerates the denuding.
2. Men and women really do respond differently to crisis.
Yes, this is a sweeping generalization that does not apply to all gender inhabitants of marriage, but…I do believe men and women are hard-wired to respond differently to stress. My husband’s approach to my son’s diagnosis was a steadfast calm and composure, and a tendency to reassure both himself and others that our son was “fine.” By contrast, my son’s diagnosis marked the only episode in my life where I publicly lost control, fell to my knees weeping, then remained in a state of shock, disbelief and mourning for several months thereafter. In some ways the disparity felt as though we truly received different news — which led me to accuse my husband of burying his head in the sand about the seriousness of the situation. The truth, as I learned much later, was that my husband’s way of metabolizing the pain was to don a brave face, which he needed in order to continue to move forward in the midst of the storm. My contrasting need to constantly confront, recite, and acknowledge my pain interfered with my ability to see what he needed, and vice-versa. While communication is crucial, I believe the key lies in understanding and accepting the differences between spouses, without judgment that either is a preferable approach.
3. Allowing your children’s needs to subsume your own is a marital landmine.
No matter how urgent and ongoing a child’s needs may be, spouses must work hard not to allow them to wholly displace their own. When a child’s needs are special and mighty, it’s alarmingly easy to slip into a groove of co-parenting devoid of any independent spousal connection. Ignoring my husband’s need to occasionally tune out, play mindless video games, watch football; his tendency to overlook my need for escapist movies, dinners out, lively conversation about anything but Autism, quickly spiraled into romantic estrangement. As the threads unspooled, we began to realize that caring for our son triage-style was the only thing we ever spoke about or seemed to have in common anymore. It then became a rescue mission for our marriage to rediscover what brought us together in the first place. One key component, which I recommend for all marriages, is to identify activities that are distinctly not child-friendly and make time for those, since they will feel truly escapist, bonding, and untethered to your quotidian parenting. Nothing benefitted my marriage more than a “Big Easy” visit to a red light district in New Orleans, now that is transporting…
One key component, which I recommend for all marriages, is to identify activities that are distinctly not child-friendly and make time for those, since they will feel truly escapist, bonding, and untethered to your quotidian parenting.
4. It’s normal to ‘want out’ sometimes.
Children place an enormous stress upon marriage. Special needs children compound the stress so exponentially it’s understandable why so many collapse under the weight. The corollary, however, is that those which do survive are immeasurably stronger for doing so. Just after my son’s diagnosis, my husband and I had a “common adversary” and began as battle-ready partners. As the months and years wore on, we inevitably began to argue about how to manage the ongoing strain of our son’s explosive public tantrums, how much intense therapy was truly needed, and at what price? Over time the fissures deepened into more existential tensions about what it means to be robbed of choice or ambition, to be under constant financial duress to perform, to sacrifice one’s life, career, etc…for the sake of the child. These are not trivial matters, they are the dictates of one’s self-worth and identity. And when identity of either or both partners begins to crumble, so too does their union and the intensity with which they feel the need to escape. It is crucial in those moments to acknowledge the devastating impact of the disability itself on the marriage – talk about it without guilt or self-immolation. Only then can you separate out the resentment over the very real issues beyond your control and attendant stress they generate, from those you might be inadvertently inflicting on each other.
5. Apology and forgiveness are the most valuable currency in marriage.
Think about how you approach your children, both in offering and accepting an apology. I know that the most unafraid apologies I’ve ever offered were to my children. Why? Because being newer to the world, children listen to apologies with an open mind, trust their parents’ sincerity of regret, and forgive mistakes without holding a grudge or storing away for later use. A key rule in my marriage is that my husband and I must be fully present for an apology, it’s not something to be passed over or uttered dismissively. Sincere acknowledgement of fault is not easy, particularly after years of wounds, but that’s exactly why they are so critical – they are the glue that keeps the partners in a state of mutual respect.
Forgiveness is the lubricant that keeps the machinery running. Think again about the charity you routinely extend to your children in acknowledging their faults and ask yourself if you do the same for your spouse? As the mother of a disabled child, I grew to accept his limitations and strengths, and work with what’s there to the best of my ability. But rarely did I extend that level of acceptance to my spouse. And when he inevitably disappointed me, I did not quickly forgive him until I asked myself what was responsible for such a gaping double standard between him and my son. I expected my husband to fill in the gaps, anticipate my needs (even the ones I didn’t articulate) and meet them, each and every time. I was destined for disappointment, and over time I had to learn how to forgive, for real. When we forgive we are not simply swallowing the pain, we are acknowledging that this person whom we’ve chosen to commit to is worthy of our dedication, deserves opportunity for growth, and might get it wrong again. To forgive is to tolerate the very real imperfections and inadequacies that our partner exhibits, much as we do for our children. And ourselves.
Whitney Ellenby is the author of “Autism Uncensored” as well as a former U.S. Department of Justice attorney. Her writings have been published in The Washington Post, Bethesda Magazine, a law review periodical, and on the U.S. DOJ website. She is the proud parent of a son with Autism and founder of “Autism Ambassadors,” a venture through which she runs exclusive recreational events for over 700 families impacted by Autism in the DC/MD area. She is an expert on Autism and has testified before the Maryland Senate, is a member of the Developmental Disabilities Advisory Council for Montgomery County, MD and serves on the University of Maryland Autism Spectrum Disorder Advisory Board.