Kirstin’s daughter, Erin, was born with biliary atresia and went on to have a transplant. Here she shares her thoughts and tips on how to develop resilience in your child.
When Erin was first diagnosed, I re-evaluated what I really wanted for her in life and I realised my dreams were very simple: I wanted her to be alive and I wanted her to be happy.
After a rocky first year involving a lifesaving liver transplant when she was six months old, my first dream was holding up well – thanks to the amazing medics at Leeds and a hero organ donor.
So to dream number two. We knew Erin would have to deal with a lot of medical management and there are no guarantees as to what health challenges her future will bring. How could we help her to cope with this and still be happy?
When a friend commented that we must be resilient to have all coped with the traumas of Erin’s first year, it got me thinking about what resilience is and how we could strengthen this in Erin.
A little googling and a parenting course gave me further insight.
Resilience is someone’s ability to ‘bounce back’ from what life throws at them. Children who are resilient will be able to flourish in life, despite difficult circumstances and still have happy lives. They will also be able to use healthy coping strategies and be less likely to develop emotional problems like depression or anxiety.
The good news is this that all children can become more resilient and liver children need as much help as they can get. I can’t protect Erin from the challenges that may come her way but I can help her become more able to cope with them.
Here are some of the things we tried to help build resilience while Erin was quite young:
- Honesty! We never lied about medical procedures and acknowledged what they would involve. I’d say ‘Yes this blood test will hurt, I know you don’t want to have it, I wish you didn’t need it too. It will be over in a couple of minutes and it is needed because it is important we know how your body is working’. Talking about every step a procedure will involve beforehand can really help a child to know what is coming next and cope.
- Give them some control. Let them have their say on how things are done, like how bloods are taken. Erin used to choose which vein they could try for bloods (to be fair there were limited options!) and how many attempts they could try. She didn’t want cold spray or numbing cream and and I encouraged her to tell the medical staff these rules herself.
- Acknowledge feelings. Assure your child that it’s ok to be upset or sad and remind them that these are appropriate responses and that others would feel the same. When Erin was very little and having blood taken, we would tell her that she could shout and cry as much as she needed to, but she should try to sit still so it would be over more quickly.
- Praise, praise and more praise! Tell them they are amazing when you notice they are trying hard, even if something doesn’t go well. I don’t like telling children that they are brave for complying during procedures; it implies they aren’t being brave when they get upset or say ‘no’. Instead, if Erin had sat really still for an unpleasant procedure, I would tell her how proud I was at how she’d helped the medical team to help look after her.
- Talk about fears. When she was worried about a procedure, we’d talk about what specific part of it was worrying her and what would happen if the fear came true. Just talking through worst case scenarios and how we will overcome these together can often banish worries and help children feel they have control.
- Listening. It’s hard to always pay attention when children are little and seem to talk non-stop, but showing we are listening helps develop their sense of self-worth. If they know you listen to the unimportant stuff, they know you’ll listen to the important stuff.
- Character strengths. We talked about her personal strengths often and acknowledged things that don’t come so easy too. Letting your child know that people may have a knack for some things but not others is very valuable. Encouraging Erin to recognise other people’s strengths and give praise to others has helped her grow into a kind and caring young adult. We’d try to highlight people’s kind or generous acts highly, much more than academic or sporting achievements. By showing them you value other strengths, it shows that everyone has something to give and can foster a positive perspective about others. Talking about how important it is to recognise how people make them feel can help them make good friendship choices as they grow – hanging out with the ‘popular’ kids won’t necessarily make you feel good about yourself.
Now we are hurtling through the teenage years all of our resilience is often put to the test, and we’ve found some new tools to help boost it:
- Self-care. Helping them find activities they enjoy and feel rewarding is great start, (note – these might look different to the things you find enjoyable!) Then support them to do these activities when it looks like they might need some TLC. Just acknowledging they often feel better after taking the dog a walk, a long bath or after playing sports can help them identify healthy go-to coping tools when they need them. Working out there will be times they just need to decompress with a comforting, predictable distraction like listening to music or watching repeats of their favourite TV show, has been a game changer for us. Demonstrating good self-care as parents shows we will take time to care for our health and shows we value ourselves. The British Liver Trust runs online wellbeing workshops for parents that can help get self-care on your own priority list.
- Creating time to talk. Teens spend less time with us than they did when they were younger and there can be less opportunity for the ‘big’ conversations. Our best chats used to happen on the walk back from school but now happen when we are in the car driving between clubs, sports or medical appointments. There is something about sitting together in a car, looking at the road in front, that helps make it easier for teens to talk. Sometimes they might want advice but other times might just want to offload. I’m trying to get better at asking when I should listen rather than contribute, I don’t always get it right!
- Connecting with others. Peer support matters even more as our children grow and the Trust runs online sessions that can help connect your child to others living with liver disease. Erin attends hospital social events and the Transplant Games. Connecting with others who have similar lived experience can help them feel less alone and bring some perspective about the challenges they have.
- Ask for help. It is normal for all of us to feel sad at times and low moods can be common in response to health challenges. If you feel your child has a persistent low mood or their sadness isn’t linked to anything specific, ask your medical team for help.
For more tips and information I found these resources useful:
- Videos designed for children that show medical procedures to help them prepare: https://www.whatwhychildreninhospital.org.uk/
- More on topics your child might experience: http://www.handsonscotland.co.uk/
- Children and young people’s wellbeing resources: https://www.annafreud.org/resources/children-and-young-peoples-wellbeing/
- Lisa Damour books and podcasts https://drlisadamour.com/resource/series/ask-lisa-podcast/
