I have been meaning to post something like this for a while. A while ago I wrote this piece to base a powerpoint presentation on for a workshop. So it definitely doesn't go into lots of detail, but does present some interesting points I think.
Not many people talk about the relationship they have with their partners. And I have written many a time on here about the extra stress having a child with a disability has on a relationship. Anyway, here is the piece of writing. Please tell me what you think.
Forty years from now when we are sitting on our front veranda sipping our wine in the peace and quiet, with no kids around, we will be able to spend all the time in the world with each other.
Yeah. That’s if you have managed to make it that far without splitting up. Or you have managed to ensure your adult with a disability is in safe and suitable independent living. Not to mention the financial side of things.
Relationships are hard work. Let’s face it. Whatever your circumstances, it truly is bloody hard work. Add kids to the mix, and your time with your partner fades into the distance. Along with work pressures, social pressures and maintaining day to day living, it becomes very difficult to remember it was once just the two of you.
Now add a child with a disability into the mix.
Suddenly, you have medical appointments, therapy appointments (which means strangers in your home quite often), a child who can’t walk, a child who can’t talk, or even a child who screams at certain sounds. You have other children, a job, friends who don’t understand, family who don’t understand. You want to cry, share the highs, and find someone to help carry the load for a while.
But when you turn around to your partner, they aren’t there. They too, are lost in a world of coping. They might be working more than ever, escaping to their friends house, or avoiding the “talking”.
Everyone copes differently
It sounds cliché, but it’s true. Men and women are different. End of story. Traditional roles within a family do, for the most part, still exist. So, Dad goes to work every day, and Mum stays at home or maybe works part time. Mum largely still maintains the home, and often is the one attending all the appointments.
Mums, do tend to find support through their friends, social networks, or mothers groups. And this can help enormously with their ability to cope. They often are the ones to seek support, or at the very least try and have a break.
Dads, on the other hand, often cope by throwing themselves into work, or some kind of task. Something that will take their mind off things they don’t understand, or don’t want to understand. Sometimes it is a relief for them to go to work and be away from the issues at home, because often they hope that their partner will sort it out. More often than not though, Dads want to do more. They desperately want to have a happy partner, they want to help and attend appointments. They just aren’t sure how to (or perhaps aren’t given the opportunity).
Key Relationship Issues
There tend to be four main issues that affect carer relationships, and this is what makes them so unique and complex.
• Burden of Care/Grief
All of them affect the other. You will notice that the first 3 are issues that are important in any relationship.
I know. Everyone talks about communication being important. Here’s the thing, it IS so important. But it is something you have to learn. Being able to talk to your partner is not easy, although it should be. Arguments happen. They are healthy in any relationship. But constant arguments which turn into conflict are not healthy.
So how on earth do you achieve wonderful communication with your partner? There is no magic solution that will suit everyone. You need to think about how you communicate as a person first. Does it match up with your partner? Is your instant reaction to assume you know what your partner is thinking and is going to say? Remember non-verbal communication says more than words sometimes. Think about what your body is doing.
If you don’t feel you can express what you want to say in words, write it in a letter. See a counsellor who can act as a mediator. Sometimes having a third person can help you talk about things easier.
Keep working at it. Find time to spend together without the kids. Use respite services if you can. Or if you have family to help out, use them! Sometimes it is good to just go out together and NOT talk about your kids or your child with a disability or whatever appointments are coming up. But sometimes it may be your only chance.
Being honest with your partner and yourself about your situation is crucial. It is ok to not be coping. Tell your partner. Trust them. Be honest if you are feeling sad. Be honest if you are angry that you don’t feel like you are getting the support you need from them. Again, this opens up communication, and helps you stay on the same side!
I know people often wonder what the hell this means...I mean, all that stuff goes out the window when you are married, right? It shouldn’t! Having a child with a disability can mean no sleep, it can mean co-sleeping arrangements, it can mean night feeds, and it can mean that 24 hour round the clock care leaves very little energy for any kind of intimacy.
But it is important to maintain at least some intimacy. Sit down together and watch a movie once a week. Hold hands every now and then. Give each other a hug when they need it. Kiss each other hello and goodbye. It is simple things that help maintain long-term intimacy. It is easier said than done though. But don’t let that deter you!!
Burden of Care/Grief
This is what makes relationships of carers so different from others. I have chosen to use the word ‘burden’ because often that is what it feels like. Both parents often feel the burden, although they feel it very differently. The grieving process is so complex and so many parents haven’t yet acknowledged that it is ok and normal to feel sad. Not just once, but over and over again. This alone affects relationships with your partner or other people. Having a child with a disability shouldn't always mean you are unhappy. There is so much joy in watching your child achieve something, or just enjoy life. So sometimes the burden is more about the future, and the unknown and whether you will always be able to provide your child with everything they need.
The complex needs of our children means that we are constantly trying to find a sense of normality in a life that really is far from being straightforward. The stress and worry of caring for a child with complex needs can sometimes be too much. Usually it is your relationship that takes the backseat, as you simply need to just survive.
Financial concerns come into this section too. Increased costs associated with having a child with a disability place extra stress on families. This often leaves little room for luxuries and can leave families struggling.
Sometimes you can only take one day at a time. Try not to let resentment build up. It is easy to resent your partner for not doing xyz or for doing xyz instead of helping out. Talk to them about it. Be honest. Look for a solution together. Encourage each other to grow and change. Don’t get stuck in the rut of thinking that your life will always be a battle.
Try and have time out together. Try and encourage each other to do something with their friends regularly. Try and attend some appointments together. Communicate the therapy goals with each other, and be realistic about what you hope for your child. Don’t forget about the siblings, and try and become involved in their lives too. It shouldn’t always be about the child with a disability!
I could probably write a book on this subject. Maybe one day I will.