Many conversations at recent PKU events, along with countless social media posts, has highlighted (to me) the late childhood struggles as possibly the biggest fear for a PKU parent. It is this stage of our lives where we are most likely to come off track (judging by the experiences of myself and many other PKUers), and the fear for the PKU parent is ‘what damage is my child causing by cheating, or neglecting PKU’?
I was certainly no angel at this age, and I ate everything I shouldn’t have been eating with absolutely nothing being considered as ‘off limits’ – despite my parents’ tireless efforts of keeping me right. However, I have since looked back on my past and wondered if I might have been any different at that age if I never became a victim of temptation and outside influences.
I considered whether there were any changes in my behaviour at that time, and there was certainly a decline in confidence.
Is it only a coincidence, up until the age I began cheating, I was quicker in thought and lived my life based on how I truly felt – because I understood my emotions and responded in the way that felt in line with my nature, personality and true personal desires?
Is it also a coincidence I feel I never regained that kind of emotional response until I successfully returned to the PKU diet in my late twenties?
I really don’t feel it is a coincidence!
Before I began cheating there was no doubt I was a happy young boy. I was never without a smile on my face, and always getting up to some adventure (just like any typical boy of that age).
I even found the way I stuck up for myself at school had changed, too.
Due to my confidence levels, and emotional responsiveness, I had always been quick to ‘dig my heels in’ and stand up for the things I felt were right, but that never continued after the pivotal age of late childhood struggle.
I found my decline in the way I understood my emotions, or ability to express them, had resulted in me giving my ‘power’ (of standing up for personal importance) over to other people – which makes you more emotionally vulnerable and an easier target for bullies.
One thing that never changed was my love for laughing, and I feel that was why I had a large circle of friends and I did OK socially.
But is ‘OK’ good enough?
I was better than ‘OK’, but I never allowed myself to be better.
I did have many occasions of experiencing unkindness towards me, not directly about my PKU (because nobody knew it existed), but because people can sense a lack of emotional strength and they take advantage of it!
That’s where the vulnerability creeps in, and I have no doubt my days of adolescence could have went much smoother had I remained on the diet.
If I still understood my emotions the way I did before cheating I suspect that emotional vulnerability wouldn’t have been there for anyone to sense, meaning I would not have been as likely to come across the unkindness I encountered.
To me, PKU adherence keeps my conscious mind in tandem with my emotions – so I act in accordance with how I feel.
That is so important!
Not everybody with PKU is affected by anxiety/depression, although it has been linked with PKU, and maybe this is the link between the two. I disregard my emotions and allow them to eat away inside when I’m not on treatment, allowing others to decide my decisions for me - rather than following my own feelings and acting for my own reasons.
When I eat non PKU friendly foods… I become a ‘sheep’.
If your PKU child is just beginning to reach the stage of PKU life where late childhood struggles are becoming a reality, it’s likely your dietician has the best ideas to keep your child on track – so definitely consult your dietician.
At the time I was beginning to rebel against the PKU diet, I feel maybe allowing a period of eating high protein foods (to become aware of my loss of emotional responsiveness, and with adult/NHS guidance) would have enabled me to experience the very reason I finally accepted PKU again in my late twenties – but at such an early age!
Learning that difference at such a young age would have been instrumental for my confidence levels, communication, social abilities, and so much more, due to the advantage of staying on treatment throughout the younger years of my life (which I wasn’t).
This might not be the best way, and it’s probably a last resort (if the PKU child was coming completely off the PKU rails), so they can feel the difference of both polarities for themselves in quick succession.
After a short period of eating high protein foods, which could result in a reduction of confidence (along with other symptoms), a swift change back to a low protein diet should have them quickly feeling better – possibly enabling them to feel the PKU importance for themselves for the first time (rather than hearing of it from ‘outside influences’).
On the grand scale of things, when it comes to PKU, we are governed by ‘outside influences’ until we realise how phenylalanine affects us internally, and, naturally, we’ll mostly sway towards the more tempting influences until we get that ‘proof’.
‘Feeling’ is key to acceptance!