PTSB – Post Traumatic Stress Bike and Hairy Mary.

Happy Sunday all! Just incase anyone was wondering, yes it is indeed 5 weeks until Christmas Eve…

You’re welcome.

Since our last update, we have been navigating new school years, teenage strops and turbulent times. Thankfully however, T’s health remains stable. Hurrah!

Littlest Riley, Squidge (not his real name before the Karens* get all excited, tis merely a nickname) has started school. ACTUAL SCHOOL. I remember announcing his impending arrival in a blog post many moons ago; it doesn’t feel real that four years have passed by so quickly. But here we are, and despite being an anxious little soul (cheers Covid), he absolutely LOVES it.

Notable school related events thus far have been:

• He has won ‘Star of the Day’, but is most put out that other people also win this and that he isn’t crowned the star each day as he “sits nicely and tidies up”
• A falling out with ‘Sonny’ after a small classroom mishap. Squidge was most put out that Sonny would not talk to him for 3 days. The friendship has since been repaired over a mutual love of Dinosaurs.
• A visit from the ‘School Dentist’ – and a subsequent 23289903625 discussions about teeth falling out afterwards
• A casting as ‘King 2’ in the Nativity. As the cast of said Nativity is 90 children spanning 3 classes, I will happily accept the role of King 2 for my offspring, and will not repeat my first Nativity casting reaction when T was given the role of a Shepherd in 2014 and I asked the teacher what the casting process was. It is worth noting however, that the following year he was Joseph…

Squidge is now holding nightly ‘rehearsals’ in the bath of his line “I BRING YOU FRANKINCENSE”, which is bellowed across the house; and also singing ‘Away In A Manger’ and ‘Little Donkey’. The latter of which caused quite the debate as Squidge is adamant that the lyrics of this particular song are:

“Little Donkey, Little Donkey, on a dusty road. Got to keep on, plodding onwards, with your HAIRY load!”

King 2

I don’t recall the bible explicitly stating that Mary was hairy, but perhaps I need to give it a closer read.

T has returned to school full time post surgery, and is coping much better than anyone anticipated with the physical demands this brings. There have, however, been a few bumps in the road in terms of his attitude towards all things school.

I received a call from T’s physio a couple of weeks into the term. T was refusing to engage in any of his scheduled physio at school. Anyone who knows T, will know that T is very laid back and generally can acknowledge the necessity of something he is asked to do regarding his health. Both Emma the Physio and I were very surprised that T had dug his heels in completely. And. The little rascal tried to blame me!

“My Mum says I’m not allowed to come out of any lessons anymore because I’m in Year 10”

T Riley – Jackanory

Now what I had actually said was in relation to something I had picked up on shortly before T had his surgery. We must remember that T is 14, and 14 year olds are crafty. T had been struggling at school with his energy and pain in his back, and so had been having to have full periods resting in his postural support chair. Completely understandable I hear you say. Why yes, of course. However, this ‘tiredness and pain’ only seemed to occur when T had lessons he didn’t like. Riddle me that! What I had actually said to the little tyke, was that now he had had his surgery, and his pain level was fine, he needed to ensure he wasn’t spending full lessons laid horizontally in the medical area playing on his phone… T very helpfully translated this to “I can’t do my physio because of my Mam”. RASCAL.

T needs to do his physio. If he stops, he won’t be able to weight bear at all on his legs, meaning that we are in a whole new realm of hoists and assisted, well, assisted everything. When T arrived home from school, we had a long and very emotional chat about him going on strike. What it boiled down to, was that he didn’t want to be different. He just wanted to be the same as his friends. He has become extremely self conscious about things which draw attention to his disability. He doesn’t like using his postural support chair in his classes, as the class have to move to get it into the room. He doesn’t want to do physio, because he has to leave in the middle of a lesson, making him stand out.

But. He HAS to do his physio. The consequences of him not doing it are just too great. In moments like this, when as a parent you have to fight your instincts to ‘make everything better’ and instead ‘be cruel to be kind’, it really sucks ass. For him to understand completely why he needed to do it, we had to discuss in detail what would happen if he didn’t. That conversation will remain with me for a very long time, and we both cried a lot of tears. T now does his physio every day in school. In fact, he has requested to do extra.

My role as ‘Bad Cop’ has continued as the term has progressed. He missed a full half term of learning during the period of his surgery, and he has 2 GCSE courses which he will complete by the end of year 10. I am also incredibly conscious, that T is very bright. It is not his ability which hinders him, merely his ability to evidence it. The complexities of his condition make this very challenging. And. He’s a 14 year old boy. History revision or Football Manager? I’m sure you can guess where his motivation lies, and it’s not with the ‘American West’ or ‘Medicine Through Time’. We now have ‘Maths Mondays’, which involve me trying to help him with his Maths homework, but generally result in me making an emergency call to 2 of my very good Maths Teacher friends to try to teach me, so I can help T. It’s a convoluted system, but it works for us! The aim is to ensure he does not need to resit Maths or English. School is hard enough for him as it is, he does not need resits on top!

Both J and I have had to ‘nag’ T far more than we would like of late. His motivation is non existent, and he has little desire to do anything independently. All we want is for him to be able to lead a fulfilled and happy life. I wish T could understand this.

I have been trying to navigate through a few things over the past few months and I am now well into my counselling with ‘Maureen’, my wonderful Counsellor. I’m not really sure she knows what to make of me. But, it has certainly made me acknowledge that just ‘getting on with it’, which has been my coping mechanism for the past 7 years, is probably not the best way to deal with things. I am finding the process tough, but helpful.

Something else which completely caught me off guard, was a situation which arose around the time of Squidge’s 4th birthday. You may recall from an earlier post, that we have made the decision not to have Squidge genetically tested for Friedreichs Ataxia. There have been no signs so far to indicate there is anything to be concerned about, and sometimes symptoms can show for the first time as late as your 40’s. What good would finding out do, except to cause us to wrap him in cotton wool when he might not need wrapping up! There is a 3 in 4 chance he won’t have it, and we are just hoping and praying that the odds are in our favour with this one.

Anyway.

For his birthday, Squidge received a rather spectacular Spiderman bike.

He was beyond excited and hopped straight onto it in the kitchen. Now I’m not sure what I expected to happen. Actually I am. What I expected, was that he would hop onto that bike and start cycling around like Bradley Wiggins.

But he didn’t.

Now I know that many of you reading this will be thinking “well of course he didn’t, that’s completely normal”, and I am sure that it is normal. But, what I do know is that the moment he got on that bike and couldn’t turn those pedals around in a full circle, I was immediately back to T age 5, getting so upset and frustrated that he couldn’t ride his new bike, and me feeling upset and frustrated that he wasn’t listening to me instructing him on how to do it correctly. Of course, the reason why T couldn’t ever ride a bike was because of his Friedreichs Ataxia, but we didn’t know that at the time. I was straight back there, and the fear which I had buried about Squidge, buried because there was no need to be worried, because he’d shown us no need to be concerned, jumped up and bit me.

I had to leave the room. It was like a full physical reaction, I couldn’t be in there, and I absolutely could not watch him on that bike. I felt like I couldn’t breathe.

Poor J had to navigate an over excited Squidge – riding a bike with one leg, and me – hysterical in the living room. Just an average Saturday in the Riley household really.

I know it’s nonsensical, but I just can’t be with him on that bike. Even now, weeks later, I just cannot lose these feelings. I have PTSB – Post Traumatic Stress Bike.

I was telling my friend about this the other day over coffee. She summed it up really well –

“Riding a bike is hard, of course he’s f***ing struggling! Everyone struggles at first!”

Forth-Steels, 2023

And she’s right. The reality of this situation is that most children take a while to learn to ride a bike. Most children do exactly what Squidge is doing and use one leg, and pedal backwards. Actually, he’s quite happy riding his bike like a peg legged pirate – and he’s very speedy too! But, that moment with T 9 years ago, clearly holds some trauma for me. It affected me much more than I realised. And the fear about Squidge obviously isn’t buried as deeply as I thought.

Maureen had a field day with this one I can tell you.

We’ve had a bit of a rough few months as a family. What I do know though, is that our life is full of the most wonderful people, and for that I am eternally grateful.

And, it’s nearly Christmas! The BEST time of year. I can’t wait for lights, sparkle and magic with J, my boys, and our nearest and dearest.

Here’s to the best of times for all.

I’ll leave you with some pictures of some recent happy times.

All the love,

L and The Rileys

xxxx

*no offence to anyone named ‘Karen’ who may be reading this. I’m sure you are lovely!