(*I recently stuck my hand-up when I heard about a new website being launched by a team of Psychologists at the University of Surrey. They were looking for pieces that would help young people and their parents while living with diabetes. After joining that part of the diabetes world 15 months ago I hope what I wrote below can help someone. Although the site isn't live yet I am sharing the words here and will then update this page when it is.)
Growing up as a child you will often look at your parents and wonder how they can be so knowledgeable and speak with authority about pretty much anything you ask. In relation to bringing me up, I sort of assumed my parents had had secret training and once a person reached a certain age they had supreme knowledge bestowed upon them. This allowed them to impart rules and expertise to me as I grew.
It was a short time after the birth of our son that the reality hit. Most of parenting is winging it and asking for advice from those who have been there before. For most new parents this comes from their own parents and friends who’ve done it before. In time confidence rises. As long as you are doing what you need to do to keep them healthy, safe and happy, that’s the most important thing. Everything else is bluster and convincing the offspring that you are the wise and worldly ones they should always believe.* And the Circle of Life continues. I’ll pause here and allow you to have a moment to sing-a-long to Elton. In time people might ask us stuff about parenting and it’s always nice to share what has gone well and warn about what hasn’t worked for us.
*Yeah, I know this slowly fades as the teenage years arrive but allow me to stretch the story a little.
You are possibly reading this ramble as a parent of a young person newly diagnosed with diabetes. First up, welcome to the club. Keeping on with the lyrical theme I always liken it to Hotel California. It’s a lovely place, even if it’s one we’d never chose to be in. There are lots of people who are in the same place as you and we’re happy to help if you want us to. Sadly you can never leave. Yet. Maybe one day. 🤞
The next thing to say is that it’s all going to be OK. I’ve had Type 1 for over 40 years, so when our daughter was diagnosed at the age of 12, it hit us hard but we also could very quickly put long-term perspective into everything. Diagnosis is often an emergency situation where the person diagnosed might have got very sick, very quickly, after slowly deteriorating over weeks at such a slow pace it was hard to see. Congrats on getting your young person diagnosed though. You might feel guilty it took so long, even if you had no prior knowledge of this wonderful condition. You shouldn’t though; the fact they are now getting their insulin from a syringe, pen or pump instead of their pancreas means all is good now. It’s highly possible your head is also now full of the fear over what every blood sugar reading might do to their future health. The early days are often full of presented rules and threats to the point where you are fearful of pretty much everything. How can you ever get to the point where you know everything and will do enough to send them off into adulthood managing their own condition and still being healthy, safe and happy?
I’m in a few Facebook groups for parents of young people with diabetes. The fear and feeling of not knowing anything is always present in those who arrive looking for someone who can help them to understand what it means. It's normal to feel like that and that’s OK. But I feel it’s so important that from day 1, diabetes is seen as a part of them and not defining them. They have diabetes and the diabetes will have to adapt with whatever the person wants to do; please promise to do your best to try not to let it stop anything, unless laws prevent obviously. There are enough World Cup winners, ex-Prime Ministers, pop stars, actors and people who have trekked across deserts and the arctic to prove that it’s a pain in the arse sometimes but it’s not a blocker.
The early days after diagnosis are tough because your ability to ‘wing it’ is hampered by a lack of experience and a massive fear that anything you do will cause either short or long-term damage. In these days it’s important to reach out and ask for help. You will probably have been given an out-of-hours telephone number to call by your diabetes team. Believe it or not, this number has been given to you to use and they won’t get mad at you for calling it. If it’s 11pm on a Friday night and blood sugars are sky high, give them a call, they want to help. Another option is to find someone locally to you who has a child of similar age with Type 1, or has Type 1 themselves. A little bit of sharing on what has arrived on your doormat will normally prompt someone to say “Oh, I know Johnny has Type 1 and his parents are really nice.” If there’s no-one, ask your diabetes team if they know anyone who might be able to offer a sympathetic ear. (If you're reading this and you still have no-one, drop me a line, honestly). The only thing I would say is that Type 1 Parenting is like normal parenting. If another parent suggests something that you don’t agree with, or sounds dangerous, smile, nod and do a little more reading before deciding that would be a ridiculous thing to do. Don’t be afraid to let common-sense kick in and ask yourself if what you are about to do is safe in the short-term. You can always discuss future strategies once daylight and calmness has returned.
The ‘joy’ of diabetes is also that it doesn’t always follow the rules and doing exactly the same thing three days running will produce three completely different results. That’s OK too. Blood glucose results, just like HbA1c tests, are not scores; they are a marker for what to do next. It’s hard sometimes but please don’t look at a number as bad. It’s an indicator, so if it’s high possibly correct and if it’s low have something to eat. Getting lots of numbers between 4 and 8 is an absolute dream but if that’s not happening don’t stress. It’s easier to make rational choices and small changes when the mind is calm, then when it’s panicking.
Just like our growth as parents and the building of knowledge over years, the same will happen with you and your child’s understanding of Type 1. Work with them to help them build the management into their life. Let it be something they are proud of bringing up to prove how even more fantastic they are to have achieved something even with juggling insulin and carbs at the same time. Ultimately it’s their condition but for now they will need you to help them work out how to manage it in a way that doesn’t hold them back. You can do that in the same way you winged it to become a wise parent.
Or was that just us and everyone else always knew what they were doing?