Transitioning from paediatric diabetes care to teenage/adolescence: A mother’s perspective
I’ve thought deeply about writing this blog for the last few months. On which angle to write from, to reach out to as many people living with type 1 diabetes; their relatives; their classmates; teachers; coaches; instructors etc. The conclusion I’m mid-way of reaching is that I can’t appeal to such a wide audience. I can only write from my own perspective, and then allow my ramblings to float out there into the ether. Maybe in some hope of reaching out to others to teach myself that I’m not alone in all of this, thus helping myself and others, all in the one bag!
On this road, of parenting a young child from age 4 to 15 years – managing type 1 diabetes and coeliac together, I’ve experienced the following (the list is not exhaustive, that requires a hardback novel!):
- In 11 years, ignorance still exists as to how serious and life threatening type 1 diabetes can be.
Examples of this in our lives include:
- Having to home school due to severe risk at age 11, left to wander around his school building whilst dangerously hypoglycaemic – and then scalded for eating and drinking to try to recover from said hypo. To then have additional “pep-talk” scenario from a teacher telling him he needed to realise how different he is to everyone else, and that he wouldn’t manage in life unless he done so! To then have authorities ask me to avoid sending my complaint in writing and that it could all be dealt with over a telephone call, and that he could change to a different school – with only 7 weeks left of primary education. Would you change your child’s school environment, the one in which they’ve felt they belonged for 7 years, the one in which they had built all peer relationships in? Because of ignorance and discrimination? Would you be happy if your child was shouted at whilst he sat eating carbs to treat his hypo – in the school canteen/dining area in front of all his friends and why because the teachers were scared? What about the child feeling scared who was treating a bad hypo? What about what it feels like for a small child to have a bad hypo? and what about the fact that this is still happening and legislation in Scotland is not providing adequate guidelines and frameworks to support the most vulnerable of our society – our children with type 1 diabetes!
- Discrimination against attending school trips with lack of support to manage the condition away from home or school – resulting in said parent attending school trip – despite outrage from diabetes specialist nursing and local GP interactions.
- Feeling fearful of applying for assistance known as Personal Independence Payment – as transition from disability living allowance DLA, as he turns 16 years of age. In the last 11 years it has been an ongoing nightmare to prove to our government just how difficult life can be; unpredictable and disastrous type 1 diabetes is and the need to be there for my child, supporting him to try to live in a society which doesn’t understand how to help us a lot of the time.
With No. 3 in mind, I would like to highlight that it is just as important for me to be there for my adolescent, as it was for my small child, for the following sub-themes:
Adolescents can find the daily monitoring and diabetes management tasks a struggle; they can avoid such tasks that keep them safe and well for many reasons including phenomenon attached to feelings of fear; worry; anxiety; frontal lobe issues like higher brain executive functioning and the lack of; deprived sleep – due to unstable glycaemia; peer pressure or wanting to be like everyone else – not taking glucose kit out with them when they leave the house for example; feelings of burnout associated with the relentless tasks needed; to always forward plan, carbohydrate count and dose adjust insulin – all of which are avoided at times.
- In keeping this conversation frank, and real to us – I want to show that all of the above behaviours are talked about with language similar to this “it’s normal for teenagers”; “that’s what teenagers are like”; “he’ll come through it”; “he needs to learn for himself and make his own mistakes” “It’s so hard to let go and watch them make mistakes, because we know the harm that causes from the inside out” “you can only be there to love him” “You can’t do it for him”…
If the cornerstone of keeping a person alive with type 1 diabetes involves insulin treatment (which is highly toxic and comes with severe side effects); carbohydrate counting (almost always built on estimation); self monitoring of blood glucose; and interaction with technology such as insulin pumps; continuous glucose monitors and flash glucose monitoring devices – all of which can malfunction; can loose signal; can give inaccurate readings; can fall off; can bring added burden and cause de-motivation; can cause severe side effects. Can you now see how frightening it is for a parent as we navigate through transition? Can you see, that since a child, all decisions of care and measurements were kept from him? and now that we have the adolescent issues combined with the constant demands of the condition, our life can be fret with so many risk factors?
Can you also now see that there has been no mentoring? Can you also see that there has been limited advice of how to tread these choppy seas? And did you know that in society – very limited amount of people would actually know how to help – would you know what to do to help my boy?
To have had any intervention / support or managed programme of moving on from being a very young child, growing into adulthood would have been a luxury – as such, it’s just families like mine, all muddling along, trying our best to function. From age 12 to 15 years, I don’t remember any situation whereby my child felt comfortable to ask for help with all these trials and tribulations. I don’t remember anyone offering me a handbook to assist him to overcome any troubles – instead I turned to yoga; meditation; mindfulness and counselling through Carers Scotland.
What I would like to add to this is this: Since my son was age 4, I was very well-educated, in a clinical manner, by NHS Scotland and instructed on treatment goals as to how to keep him alive from now on. I was instructed and taught to take steps X, Y and Z and sometimes also A, B, C, D , E, F and other letters of other unknown alphabets to me, if X, Y and Z didn’t work. I wasn’t given specific algorithms to keep from failing. I was asked and instructed to do my best to keep him alive, every single day without rest, now that his pancreas was damaged for life, due to an autoimmune reaction. His paediatric service team were amazing, even though they were and are overstretched and overburden by workload – (as this incidence of this condition is rising in young children). And now? I have to, in a way, let go of all this teaching; reverse engineering of the mind if you like! Nowhere along this journey, as humans, who got slightly broken, where we educated or instructed or guided to heal, to overcome and to manage fears associated with this life threatening situation. How would you deal with something face to face in which it threatened your life? How would you tackle that fear?
Transition, follows a period of changing from one setting to another; one paradigm to another. Bringing all this learned behaviour forward, bringing all our teachings; our experiences and at times failures, to the table now at transition! We don’t come through these doors with a virgin mind so to speak, we come with gaps in knowledge, we come with fears based on past experience and we come with hope that the future will improve. We need support, as families. We need to know that someone has our backs through this tough experience. This is the way we can build strength; confidence and positive outcomes from a journey which has seen us, at times, fighting for our lives. Superheroes without capes and all that jazz!
Meantime, it’s late nights on game stations; copious midnight feasts to fuel said gaming nights; nights out with friends and growing too tall to fit through the front door. It’s quiet moments of looks at each other that say a thousand words, and not knowing how to navigate the change from mother-boy; mother-son to mother-man. It’s lots of love from his sister, and secret talks in their bedrooms which I love to hear from the kitchen! It’s constant funding of ridiculously priced branding clothing to meet the demands of such a fashionable/handsome existence and lots of love and support when things get so tough that the only thing he can do is to avoid it for days. If you’re heart breaks when reading this – I know you must have read Nicholas Sparks novels at some point in your life, and constantly listen to First Aid Kit songs like they’ve become an unseen movie soundtrack (guilty, and by the way, they were amazing live at Glasgow’s kelvin Bandstand recently)
Anyway, I’d love to hear your thoughts on my words, if you are experiencing transitioning at the moment, or if you feel your adolescent child would benefit from more help in getting through a period of growth (mentally and physically) to enable and empower them to experience life as they wish. Just holler!
I’m currently starting the first year of my PhD at the University of Strathclyde, in diabetes research, having recently studied a part-time Masters in research, and many sleepless nights checking bloods etc. My blog is a personal account of our family life, and shows my own opinion. Good luck on your journey folks – Namaste! Diane x