When you have so much responsibility looking after your family, sometimes other relationships like with your partner or friends can end up on the back burner. Most times, it’s not an immediate thing, it creeps up on you slowly over time. All relationships take focus, energy and work to make them happy and successful but, in my opinion, when you care for a child or children with Special Needs of any kind, it takes a huge amount of extra effort to keep your relationship strong.
I recall the first couple of years of Freddie’s life through a sort of haze. Having been told at my 20 week scan that our baby would be disabled but without any diagnosis (which would remain that way until he was about four years old) I was in turmoil from that point on. So was Ollie. We did our best to come together over it all but I know the reality is that he was holding me up far more than I was him. He is far more stoic than me and I know he felt that if he crumbled too, we might go under. As soon as Freddie was born, all of my efforts, night and day were focussed on him. Almost obsessively, I would spend hours and hours researching the internet for answers and ways to help him. I was uncompromising in the way I went about his daily therapy. Luckily, although Ollie was also totally dedicated to doing everything we could for Freddie, he was able to have a little separation from it. If we had both been like me, I think we would have gone under. He knows I tell people about this all the time so with his permission I’m telling you that he told me in later times that if life had continued to be so hard, he thought we would be divorced by now. Hearing that for the first time was a shock. When you are overwhelmed and living stuck in your head, it’s very easy not to truly see what’s going on around you. Now, this isn’t to say, the challenges were all down to me. We both take responsibility for the difficult times and for the fantastic times.
I know you know that feeling of the mental load. The mental load we, as primary care givers, carry around with us every single day. It’s all of the unseen things that go into running our homes, caring for our children, keeping family relationships going, getting the children to school with all the right kit and homework done. It’s also all of the organising, diary management, multitasking everything and still making sure everyone has clean clothes.
I absolutely do see my marriage as a partnership. We do share Freddie’s physical care needs and the mental strain of that, plus the care of our other two children. He does far more work out of the home and I do more inside the the home, although I admit he does the majority of the cooking. However, I know that I am (perhaps by default) responsible for so many of the unseen jobs. The mental load is huge. Occasionally we get grumpy with each other. I’m not meeting his expectations of what should have been done and vice versa. Often, I know, I don’t see why I should ask him to do x,y or z. I think he should just know it needs doing. It gets me so mad. The times it works best is when we sit down and talk through what we need from each other. Only this month, I said to him that the 300 tons of washing that seems to be created weekly by our family of five, really gets me down. I try to stay on top of it but I feel like a washer woman and sometimes I’m not on top of it and we are scrabbling around for clean uniform. That then creates another stressor in the mornings or last thing as night when we are tired and time poor. Being more organised would help. So, I came up with a plan, proposed it to him and he was on board. We are yet to see if it really works but I’ll let you know. I am going to set specific days of the week when say, the towels needs to be washed and changed, the kids bedding and our bedding. Twice a week for the children’s clothes and we can sort ours out as and when. Set days to get a few of the household chores done. That way, whoever is at home that day (Ollie’s schedule isn’t 9-5, Monday to Friday) that person looks at the jobs list and does it. Time will tell.
Sometimes, the role of the partner who works outside the home and brings more money in can be seen as more important. You know that if you were to be paid accurately for all the work you do as the primary care giver in addition to an external job, if you have one, you would be a millionaire. To say that some contributions are more worthy is a total nonsense and a very outdated way of looking at things. Ollie always say that we would never be able to have our children, live our lives how we do and have all of Freddie’s care needs taken care of, if I was working full time so that is invaluable to us as a family. For us, in our situation, the stress would be immense.
Most times, in my opinion, the root of relationship breakdown comes from a mix of blame, anger, resentment, denial and lack of acceptance.
This could look a whole host of ways from blaming yourself for your child’s disability (I’ve been there) to resenting your partner for being the one who gets to leave the caring role to work outside of the home or resenting that you have to be the one to leave the home to work. It might be that your partner is in denial about your child’s condition or the severity of it, you might both still be in the very early days of grieving the life you imagined and not yet be able to accept the situation. There are many many different elements but they often circle back around to blame.
This subject comes up a lot when in the 1:1 sessions I do, live workshops and Facebook lives in our inner circle so I know it’s an important topic to talk about. I want to share with you some thoughts about how to keep your relationship strong when caring for a child with Special Needs.
Make sure you speak up about what does and doesn’t work in your relationship. If you feel the mental load is way too much, then find a way to discuss it. Come up with some solutions about how to share things more equally. Part of this process requires your absolute honesty though. You need to be prepared to admit what you’re happy to let go of responsibility wise. I used to get to angry when Ollie couldn’t (valid reasons) or didn’t want to (also often valid reasons) attend certain appointments. I felt that he should share as much of the emotional stress as me in exactly the same way as me. That was the only way it was going to be fair, in my mind. I felt resentful that he was ‘getting a break’ at work and I was spending my days researching, at appointments and doing therapy. He felt guilty he wasn’t doing more but there are only so many hours in the day and sometimes it really only requires one person at a time. Ask yourself, would you be prepared and comfortable to hand over the decisions about your child’s care needs? Would you be happy not to attend the meetings and not to be in control of the questions asked? The answer for me was no. I am a self confessed control freak and I do want to be involved at all stages so handing over this load wouldn’t have worked for us. Once I understood that about myself and accepted it, we both knew what our roles were in our relationship with Freddie and his needs. (We still have a little way to go on the household chores but we’re getting close.) Make the decision to own your role and the one you want to take responsibility for. Discuss and decide upon the big issues together but feel happy and empowered taking the lead. I know I do now.
Compromise is key. On both sides. It’s also not a competition about who knows the most, who earns the most, who puts more hours in on different areas of life. It’s a joint effort and if you use your individuals skill sets wisely you can make a cohesive partnership. Embrace your differences and respect them too. You are not with your partner because they are a clone of you so celebrate your individual strengths.
Respect and respectful communication is so important. It’s easy to lash out when you feel angry or hard done by. Often though, your partner has similar feelings going on. When we don’t talk together and be honest, that’s when the respect gets lost.
Know that things can change. As your families needs change, so will your roles within your relationship. Jobs might change, care roles, needs and abilities might change so evolving the partnership is essential.
Making time for each other is also such a huge element to keeping your relationship strong. Plan into the diary, time out for you, time out for your partner and time out for you both together. I know that for some families it simply isn’t possible to leave your child but there are still ways to make time together. It might be as simple as a takeaway and a film on TV with your phones turned off. Giving each other undivided attention can be powerful. Can you have dinner together with no TV or distractions and commit to talking about anything other than your child(ren).
Finally, remember that you, your partner and your relationship is as important as your family and your child(ren).
If you would like to read more, you can visit the My Family Our Needs Website by clicking here to read an article I wrote for them previously on this topic. If you have any ideas that work for you or any thoughts in hind sight about how to keep your relationship strong when caring for a child with Special Needs, I would love to hear from you. Leave a message on the blog post or you can email me at firstname.lastname@example.org or pop over to my Facebook Page or our group, CEO of My Special Needs Family. If you prefer to listen whilst you walk the dog, drive or whilst doing boring household chores, click below for the CEO of My Special Needs Family Podcast.