The impact having a child with a disability had on one couple’s marriage

Aimee has been with her husband Ollie for seventeen years, married for eleven. They have three children, Freddie who is seven and has an extremely rare genetic condition, Bella who is almost six and Jago who is three.

When we started talking about having a family, I can clearly remember walking our dog and saying to my husband, ‘I need to know we are committed to each other and that we both really want this. If we find it a challenge to conceive or we have a child with a disability, I want to know you won’t walk away.’ Looking back, I wonder if I somehow knew we would have a child with special needs? Of course, it isn’t possible to know the future, but it was a question I asked, nonetheless.

At my twenty week scan we found out our baby would have special needs, but no one could give us a prognosis. We had no diagnosis, and this remained the case until Freddie was almost five years old. I am in a very different head space today and in comparison to the early days, so are we as a couple.

When Freddie was about two years old, Ollie said to me that at times, it was so bad and the grief so much that he thought we would divorce. That was such a shock to me at the time, but I can see how he felt that way. We weren’t connecting or having any time to ourselves. It was like living in a parallel universe. We talked all the time but mostly focused on all the challenges and sadness we had. I spent a huge amount of time researching symptoms, treatments and therapies. I was all consumed with Freddie. I wasn’t playing any real part in being a partner. I don’t feel guilty about this because, quite honestly, I am human – fallible and inexperienced in the situation I found myself in. No one was to blame; it was a joint responsibility to work on our relationship. We had been together for a number of years prior to having Freddie. We had already been through some huge life events together and come out the other end. I feel lucky that we hung in there.

Life now

Freddie is now seven. Although my husband and I are definitely working as a team, communicating and have more time for ourselves, it isn’t easy. We are constantly exhausted and stressed. I do however, as a priority, make sure we have fun stuff booked into our diary to look forward to. We both exercise now and have respite when possible – a release from the daily challenges. I’m always packing way too much in but it’s a must to keep us going.

Sigan Hartley, Assistant Professor of Human Development and Family Studies at University of Wisconsin-Madison’s Waisman Centre, said, ‘There seems to be a prolonged vulnerability of divorce in parents of children with autism.’ Research shows that there isn’t much difference in divorce rates of parents with typically developing children versus those of a child with autism, until the child reaches around eight years old. At that point the divorce/separation rate increases.

Although this study was autism specific, I don’t think it matters what your child’s diagnosis is, it’s the cumulative stress that you endure which can break you. The shock of living a life you didn’t envision, and the battering your mental and physical health can take when loving and caring for a child with a disability.

When Freddie was little, I used to think, ‘It will get easier if he can learn to crawl, walk, talk, eat independently …’ Essentially, some of that is true but there are so many areas about his care I hadn’t even considered.

I think if I had considered them all my mind would have imploded. The realisation that Freddie may well live with us forever and our plans for our fifties are unlikely to be even remotely possible, is stark. Worries over who will care for him when we are gone and how we will afford the care he needs loom constantly at the back of my mind.

As Freddie approaches eight years old, the stress and the fear aren’t going anywhere, but we have worked hard to build strategies to help support each other and navigate our way through.

So how can we support a lasting marriage?

One of the biggest reasons cracks start to form between partners when caring for a child with a disability is blame. Blaming either yourself or your partner. This can lead to feelings of resentment, a lack of acceptance and anger. All these emotions are hard to work through when you are suffering; grieving the life you thought you would have. Sometimes your partner may be in denial about your child’s disability.

Having a child with a disability brings huge challenges to any relationship and it requires an extraordinary amount of dedication and hard work, from both parties, to make it work. Never underestimate how difficult it can be but have faith it is possible to live a joyful life.

The difficulties will often be magnified when your child has special needs due to the nature of the decisions you have to make. It might not be which after-school club they should join, rather which life-saving operation or therapy is the right choice and how to raise the money to get it.

Remember what is important

In my opinion, the most important element is communication. Communication, respect, humour and teamwork. Getting outside help, such as counselling, can also be incredibly beneficial and definitely nothing to be ashamed of.