Rebecca (mother of 2 children, daughter Sarah, 8 years, has Pallister-Killian Syndrome): Just after Sarah was diagnosed with Pallister-Killian Syndrome and we knew that she was headed down a road of profound disability – physical and intellectual – we had our first visit with a case worker, and she came in the evening so that we could both be here and she was really honest with us.
One of the things she said was that the divorce rate for parents of kids with special needs is around 80%, so look after your relationship. And we sort of went ‘Wow, you know, 80%. Mmm.’ [laughs] And to us it was almost like her saying, you know, ‘I bet you can’t.’ It was like a challenge, like ‘Oh, we’re not going to be part of that 80%. We’re going to be in the 20%. We’re going to get through this and we’re going to work together.’ And it was really powerful.
It also really fed into our mantra of accepting help because it wasn’t just that we were accepting help to cope with Sarah, it was we were accepting help to make sure that our relationship stayed solid enough that we would be a team for the long term. And it worked really well and that’s something that we do now, as well.
We make sure we get at least one weekend a year of just the two of us. Just to be Bec and Tim, not Mum and Dad. [laughs] And that’s really important and I would definitely suggest to other parents that they make that time and if tension is building in the relationship, find a way to sort of step back and diffuse it. You need to be a team.
Karen (mother of 3 children, daughter Ginger, 7 years, has Down Syndrome): Working on your relationship when you’ve got any children, but particularly a child that’s got special needs, is so really… it’s crucial and it’s probably more important than anything else you do.
But it takes a long time, well it took me a long time to realise that and to get to that. And it was only when our relationship was in real bad, in dire straits, that we were ‘Oh dear, we maybe need to put some work and time and energy into there.’
It’s difficult, I think, when, you know, you’ve come together, you’ve fallen in love and you’ve made a child together and the child’s not okay. So it can it can bring up issues around ‘Are we meant to be together?’ and, you know, ‘If we hadn’t got together, then maybe we wouldn’t have this happen to us.’ You know, ‘If maybe I’d had a baby with someone else or…’
So all these things can start to come up and build up and if there’s no time set aside to remember why you love each other, you put the work in you can remember why you fell in love. If your relationship needs to end or you decide to end, you’ve still got to communicate for the rest of that child’s life and so you’ve got to work on your relationship however that relationship’s going to be. Whether it’s still together and in love or whether it’s separated and just loving and kind.
Rebecca: For families who are at that process of, you know, confronting diagnosis, the biggest thing that made a difference for me was my mindset. I made a decision that either I could be bitter and upset about the fact that this happened to my child, for the rest of my life or her life, or I could work at deciding: ‘Well, I’m going to be happy anyway. I’m going to find a way.’ And I decided that that’s what I would do. So I started off small. I decided at the end of every day, I would tell Tim something good about my day and it just worked because I was focussing on all those positive things all the time.