It’s amazing that any marriage survives raising children with special needs. A relentless schedule of specialist appointments, filling out forms, meetings, unexpected hospitalizations, repetition, persistent sleep deprivation, difficult mealtimes, public embarrassments, and financial pressures can create a lethal cocktail for any marriage. Add in the personal disappointments and frustrations most parents experience and the sense of disenfranchisement that comes with them. Let’s just come out and say it: Raising children with special needs is hard on a marriage.
Turned upside down
The story I’d planned for my life was turned upside down with the birth of our two children, Zeke and Anna. Like many young women, I was aware that motherhood would be a hefty challenge, and once I discovered I was pregnant, I did what I could to prepare. I read, sought advice from people I respected, prayed, and studied other parents — both those I wanted to imitate and those I was sure I did not! But what I hadn’t anticipated was that this was not the sort of challenge you could carb up for in advance. It was hugely demanding, but not in the sorts of ways I had expected or experienced previously. There was no structure provided, no feedback available. Days were monotonous and lacked adult conversation.
That much, I imagine, any stay-at-home parent will tell you. But when we first suspected, and then had confirmed, that our children had special needs, it simply added to the isolation and disillusionment I experienced. And crucially, from a marriage viewpoint, the gap between my husband Andrew’s daily experience and mine grew wider and wider.
Prior to getting our son, Zeke, diagnosed, we were trying to follow the advice we’d come across in parenting guides and manuals. But we were finding they simply did not work. I was increasingly aware that normal parenting rules did not apply. We would go to toddler groups, and as Zeke and Anna ignored the toys and activities and wandered around aimlessly, I would wonder, Why are we here? Why can’t they do what the other children can do? These weekly opportunities to compare the children with their contemporaries brought me to the realization, much earlier than Andrew, that our children were different. I realized we needed to treat them differently. Fewer words. More flexible eating requirements. Moveable boundaries. Avoiding lectures as much as possible (Zeke, quite genuinely, finds a lecture so stimulating that he thinks it is a game and will repeat the behavior in order to get another).
We tried hard not to be controlled by our children.
On the other hand, my husband, Andrew, wanted us to persevere down the traditional road of family life: clear boundaries, lots of verbal encouragement, firm discipline, sanctions where necessary. Our parenting became disjointed, causing friction between us. We tried hard not to be controlled by the children and continue to offer hospitality, be generous financially, budget frugally, and work long hours as we’d always done. Before entering church work, Andrew had been a management consultant in the city, and he was determined that just because he worked in a church, he would not drift in late and clock out early. But trying to hold to all these principles, in the face of very new circumstances, took its toll on me.
Because Andrew was working, I did most of the appointments and hospital stays and checkups. As I described to him alien concepts like sensory needs, I got the distinct impression he was not convinced. My daily routine was about learning and integrating all this new information into parenting; meanwhile, he was concerned I was being bamboozled by woolly social-care mumbo-jumbo. We were pulling in different directions, and the strain was increasing.
At the same time, Andrew worked hard, hoping each day to come back to a happy family — only to walk through the front door into more tears and shouting. He did the early morning shifts as my sleep deteriorated, took the children for long drives on Saturdays to give me some space, and spent hours on the trampoline with Zeke when I had lost the emotional energy and motivation to keep trying. I remember how defeated I felt when Andrew first said that his “day off” was by far the most exhausting day of his week. This isn’t what I wanted for him, but I just didn’t have the reserves to do anything abut it.
Coming to a head
Then, in rainy February 2013, things came to a head. We had had a particularly difficult few weeks: Anna had been hospitalized again, Andrew had been away for two days, and I had nothing left in the tank. Reluctantly at first, Andrew eventually agreed to cancel all his traveling commitments for a period of six months, decline all future invitations, and start working nine-to-five locally. Gradually, the strain decreased as we identified more with each other’s lives and the challenges of day in, day out care. I knew he was in the thick of it with me. Our marriage improved.
It seems so obvious now, but at the time, that small sacrifice seemed like too much. Throughout those early months of recognizing that the children had special needs, we had been desperately clinging to the idea there must be limits to the control Zeke and Anna were able to wield with their meltdowns, refusals to eat, erratic behavior, and sleeplessness. We were trying to live the lives we had expected, even as life imploded around us. Two years later, having learned some painful lessons, we have conceded a huge amount of ground on our previous standards for raising children — Zeke only ate toast and cereal for a year; Anna is allowed to lick metal railings, and so on — and we would never go back.
In the end, because we refused to let our marriage go, we had to agree to let a lot of other stuff go. We’ve gotten to a point where we’ve decided that our life simply cannot operate as other people’s do. We’ve acknowledged that while there are some things that might help our children, we simply don’t have the capacity to do them, because it would put our relationship under too much strain. I’ve often wondered, actually, whether having a marriage might be the biggest challenge special-needs families face. But if we can recognize it for the explosive battle it is, rather than the peacetime jaunt we hoped it would be, then at least we can throw all our best firepower at the challenges and concede more ground in other areas to protect something that is truly valuable in God’s sight.
One final thought
The breakthrough came, when it did, not by me talking to Andrew but by me talking to God, who talked to Andrew. It didn’t result from a sustained period of banging the “you need to be home more” drum. It was just one line from the Lord, “Your life for you wife,” in this case — and the trajectory of our marriage changed.
Excerpted from The Life We Never Expected by Andrew and Rachel Wilson. Copyright 2016. Used with permission of Crossway www.crossway.org.
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