In September I wrote a guest blog for JDRF on the difficult experience of the first few weeks of my six year old son Jasper’s new pumping regime. Four months have passed since Jasper got his Medtronic 640 and thankfully a lot has changed from those tough early days. This is in no small part down to a surprising revelation Jasper made about how he learned to accept his pump, mostly thanks to an elephant named Jake!
I talked in that blog about how the pump had definitely made things more consistent with his glucose levels and we were experiencing fewer hypos. But I had found in the first couple of weeks of the pump that Jasper’s moods were terribly erratic and he would fly into a rage at the smallest thing, even when his blood glucose levels were normal.
This was having a negative effect on the whole family dynamic so I decided to see a hospital’s resident child psychologist.
For the first meeting with a psychologist I went alone and found it really beneficial. There were two key messages I took away with me; that it’s totally acceptable for me to be angry at Jasper’s diabetes and I need to be able to admit to him that I have angry days too. I had been so upset at seeing him worked up that I had almost been getting angry trying to calm him down. This had only been making him worse and he had started resenting me for it.
After that things improved dramatically – I let him express his anger and frustration at the condition and sometimes we would just have a chat about how we both didn’t like his diabetes but we were in this together.
The psychologist agreed with me that I still needed to reprimand him when he was rude to me rather than just angry at his diabetes as he still needed to know the behavioural limits that any child needed to adhere to.
Jasper came along to the next meeting and my contribution was very little! Since his diagnosis Jasper is wary of doctors so I told him that she was just a lady who was interested in knowing about his pump. He talked more in that appointment than I had ever heard him talk in all his reviews put together!
It emerged Jasper thought of his pump as an elephant called Jake. This was a revelation that I had never heard of before. Jake’s body was the main part of the pump. His trunk was the cannula.
Jake was his friend and helped him, but Jasper felt angry when Jake stamped on his tummy and made it sore. ‘Sometimes Jake is naughty and eats too much of my food making my tummy sore’. This was a description of his hypos. He explained some children had pulled Jake’s trunk out of his tummy and caused him pain – we all chatted about how we could wrap Jake’s trunk more securely into his pump bag so this didn’t happen again.
I feel this dialogue was a big turning point. Instead of feeling hurt that he had talked about some things that he hadn’t talked about to us at home, I felt relieved that he had found someone who was not embroiled in his everyday care, to talk to openly.
He was obviously ready to open up too. He has been a much happier child since then and has now embraced wearing Jake.
When asked how I find the pump I tell people it’s not a miracle cure and it still throws unexpected curve balls – unexpected highs and lows when all your data analysis goes out the window.
But I think it is a much better regime for all of us and makes our lives a lot easier.
All in all 2016 is looking to be an easier year with Jake on board the type 1 diabetes ship.