All marriages and partnerships have their ups and downs. Throwing kids into the mix changes the dynamic, dependent on the strengths and weaknesses that are already there. Children with disabilities can amplify this dynamic.
As parents of a child with autism, Toby, my husband and I, in the early stages of realising the realities of our daughter Hetty’s diagnosis had our fair share of ding-dongs and periods of self-pity. These were often the product of a paralysis in our control, in not knowing what we were doing. It was the loneliness and powerlessness in not feeling equipped enough, and as expats in Singapore, the distance away from our familial support network who would have ordinarily stepped in as an emotional crutch to help us.
No matter how ‘together’ you are as a couple, the sucker punches to the gut will happen
Dealing with the reality or shock of a diagnosis or presenting issue may incite differing degrees of acceptance, denial or grief. Some may be triggered, bodily and mentally, when a child is falling behind their peers, melts down in a supermarket aisle, makes a run for it, or gets physical at school or at a birthday party, causing the stares. No matter how ‘together’ you are as a couple, the sucker punches to the gut will happen and for your own survival, it is easier to keep your head down and forge on inwardly and privately.
Parents with children with specialised needs ’employ whatever strategies help them to manage’
Laura Marshak a professor in the department of counselling education at Indiana University of Pennsylvania and co-author of a helpful book “Married with Special-Needs Children: A couples guide to keeping connected” says that parents with children who have specialised needs “employ whatever strategies help them to manage their emotions and to make sense of and try to control what has occurred”.
Some parents will plunge into information gathering, some will grieve for the loss of the child they thought they may have, some deny, some catastrophise and some will get angry at the world. In public, I tended to adopt the “gotta go” approach with a smile, wave, and a “how are you?” on the run. On the inside, I feverishly researched services available to us: booked on to wait-lists with psychologists, accompanied Hetty to speech and occupational therapy, analysed stool data with nutritionists, pleaded with insurance companies, read articles and books by clever people to try and give us a plan. I found my sense of control through knowledge given by experts and people who specialised in helping children with needs.
Toby, however, who does not ever sweat the small stuff, erred more towards a subset of denial. He was less focused on the comparisons with others and he did not go looking for the gaps or problems. When he took Hetty to the birthday parties, at the weekend, he would sit on a wall with her gabbling away to herself, follow her into the bushes when she walked off from a game half-way-through, scooped her up when she screamed and flailed when she couldn’t blow out the other kid’s candles and would leave early. It would never occur to him to explain her quirky behaviour to concerned onlookers or worry about conforming because Hetty was Hetty.
He trusted me to do the research but when I was in my more obsessive “I will find that magic unicorn” stage of research, he would bring me back down to earth, questioning me on the rationale behind doing what we were doing.
“What actually is cranial sacral?” he probed, which poked my inner beast having done all the hard-graft on the research. However, that pause in the process ended up being the most helpful thing he could do to mediate my hyper-vigilance on current interventions and would keep me grounded on what was achievable, logistically and financially. It took us to a place of trusting ourselves enough to self-appoint ourselves with an “expert” status when working out what was best for Hetty, not just because it worked for someone else. It helped us through times when doors were being closed on her educational options and helped us focus in on our intuition and re-evaluate what success for her would look like.
As with any relationship, the ideal is finding a balance in your roles as a couple. For parents of children with special needs, the dividing and conquering of loyalties to fulfil the logistics may practically be the most effective way of keeping the ship afloat, but it can’t fix the sense of aloneness. In operating apart from each other, parents in any capacity may become resentful that our partners have not noticed that we are struggling.
During this lack of connection, the mundaneness of getting the lunch boxes ready, driving around for pick-ups, practising the therapy homework everyday compared to the pressure of providing for the family financially can become competitive in its representative martyrdom and the rot may start to set in.
A higher divorce rate among couples who have a child with special needs
If this is the case, this may be the time that you consider an external support system to neutralise that polarity in your relationship. Laura Marshak,“Married with Special Needs”, says that there are studies that show “a higher divorce rate among couples who have a child with special needs”. The not talking and not connecting leads to the loneliness and bitterness, and our ability to connect at the time when we really need it, becomes less likely.
Similarly, Dr Lynetta Willis a psychologist and family coach in the USA advocates that you, as a couple, must find your way back to the “same side of the net” even if you don’t agree all of the time. The intention is to keep all the ideas and approaches aligned so that instead of berating your partner for something they are not doing well or as well as you can do it, you see that there is strength in the range of ideas and approaches. Toby and I are still learning to have boundaries about our time. Hetty is blossoming in her uniqueness but we still have four young children and if we are pulled in too many directions, have too much planned on a weekend, and try to do it all we miss those moments of really noticing each other.
In summary, the only way to reach this Ying and Yang in your parenting model is by practicing self-compassion. There is strength and respect in pulling away from a conversation that feels feisty, until you have calmed your mind down. There is vulnerability in apologising when strong words are spoken. There is necessity in filling up your own cup by doing something for yourself or with a tribe who genuinely fills your cup for you. Ultimately, two things can be true: you can protect your individuality whilst complimenting another’s and your child/children will feel the benefit of connecting with the best version of you.