By Zoe Gow
Letting them make mistakes, letting them fail, letting them feel rotten. We might try instinctively to protect our kids and it’s a hard thing to hold your hands behind your back and not say anything, or say something knowing they won’t listen, but for our kids to learn how to self-manage it’s something we must do.
My girls are 15 and 13 and they are both living with POTS (Postural orthostatic tachycardia syndrome). When they were little and epilepsy was the main focus, it was my job to ensure that we provided an environment that supported their needs and health.
With my youngest, her executive planning issues meant that planning what needed to happen day to day came down to me. I was constantly reminding her of things and was the little voice in her head that reminded her to get stuff done, to organise herself and support her learning.
As the girls have matured and got older the focus has been moving to them managing themselves.
Now, I know for some families this could never happen and expecting your kids to remember medications and be responsible for dispensing them is not an option. I completely understand this, but for my girls and our situation it’s not up to me anymore.
To give you an insight into this I will explain what happened to Lizzy recently when she increased on a medication to three times a day. She would remember for three days and then forget for two and feel awful. It kept on happening but instead of stepping in and reminding her I am letting her fail and feel awful. I have watched her realise forgetting is a bad idea. I was also organising all her meds. It is now her responsibility to put them into the weekly tablet container.
Some may think I am not parenting well and I appreciate everyone does things differently but in our house they get sick and tired of me saying “the things you learn today will help you to adult in the future”.
The girls’ fatigue levels can get pretty bad so they both take one day off a week from school. They chose their day based on what they have got going on each day and which day was best to use and not impact on their learning. They are expected when they are home to get homework done too. After recently being diagnosed with POTS, they are fully aware that they mostly likely will live with this condition for a long time. So I treat them maturely, honestly and respectfully, I expect them to take charge of their health.
The other area I have had to learn to step away from is the management of their treatments to help improve their functioning. There are certain things that will make the girls worse and others that will help them. Drinking enough water, sitting on a chair not on their bed, getting on the Pilates machine and working on their leg strength. I was getting super frustrated one night with Kenzie because I could see there were things that she could be doing to help herself and instead she was having a pity party. Now I get the pity party but I knew that it was up to her to change. As anyone with teenagers knows, telling a teenager what to do will never work. That night I was so angry with Kenzie and instead of talking to her, I sat down and wrote a long message to her on messenger. Social media can be your friend; both my girls use it to talk about things they sometimes can’t say. The message I sent to her talked about how we would do anything to help her, how we understood how difficult things were but most importantly I talked about what part she had to play in managing her health. I talked to a mate after I sent the message and let her think about it. Later that night I went to check on both girls and Kenzie was on the Pilates machine which I will have to say was a bit of a gloat moment for me of, ‘oh yeah, it worked’.
The following day Kenzie talked to me about what she wanted to do, how she knew she could change things and how it was her responsibility.
Parenting at its finest for me.
In our house there are lots of conversations, respecting everyone’s boundaries, appreciating what they are going through and always being honest and truthful. I am not responsible for their day to day health, they are. I will be their advocate, I will organise appointments, I will drive them to doctors, I will speak on their behalf if they want but I am starting to step back and allow them to talk instead of me. It’s not always welcomed by them but it’s a necessity to ensure they learn how to speak up for themselves with doctors.
I don’t want to tell anyone to suck eggs; I know everyone’s situation is different and by no means do I know everything, but what I do know is that if we do everything for our kids, they do not learn to become independent.
From the point of view of parenting a child with complex issues, it can become very easy to want to control everything because if we control everything we feel less stressed and more on top of everything. That is a moot point most of the time, controlling everything doesn’t work. Doing that is a great way to end up with a nervous breakdown or pushing everyone away. Letting go of control, allowing our kids to grow up and learn from their mistakes, even if it’s related to health is the only way they will learn.
I expect the years ahead will give my girls lots of opportunities to make mistakes and struggle and I will always be there to support them in whatever way I can, but it’s about their own strength and independence too. If in ten years my girls are still living with me, I will know I had it all wrong; in the meantime I just cross my fingers and hope I am getting it right.
Love and Strength to all
Zoe is the mum of two teenage girls who have both lived with epilepsy and a medical condition called Postural Orthostatic Tachycardia Syndrome. She blogs about life, love, learning, identity, strength, resilience, and their journey with chronic illness at The Carbon Copy Life. You can also follow her on Facebook.