This week saw our final pilgrimage to London to see a hugely experienced Neuro Developmental Physio. And quite frankly, it killed us all. I’m in bed with a roaring sore throat and bags under my eyes that look like bruises, bruises that tiredness itself punched right into my face just to make sure that I felt the true and honest power that exhaustion can have on a person. Crippling.
Anyhow, all started well as we trundled along to the in laws on Tuesday afternoon. Kiddo had decided the night before to deny even the strongest medication the chance to allow him some essential sleep, so I had been up since 2am and to be honest was feeding myself coffee in the same way I was feeding my car petrol. But we arrived, after a rather non eventful journey. Beautiful!
And then it began. The excitement of seeing his grandparents and their Christmas decorations was like a firework being launched inside kiddo, and wow. He did not hold back. He began running laps of the house, laps that I couldn’t keep up with. My coffee tank was running seriously low and a refill would have made my brain explode with all that caffeine. Thank God kiddo’s grandparents and uncles are so willing to share the load when we visit. Because if they hadn’t, I honestly don’t think I would have made it to the appointment.
ADHD in full flow, somehow we managed to tempt kiddo into sleep. Yes it was induced with medication, but his peaceful face as he slept looked so thankful for it. I lay next to him and drifted off myself, so grateful for the world to have finally come to a holt that day.
So the next day off we headed round the M25. If you’re reading this from abroad, the M25 is a circular motorway (highway, interstate etc) that surrounds London and quite frankly sucks any slither of hope out of you that you may arrive to your destination on time. Terry Pratchett once wrote that it was designed to draw the souls of drivers just that little bit closer to Satan. The perfect description I would say! But low and behold, the roads were kind to us that day. And we arrived at the station for our normal routine of a baguette and crisps while kiddo shouted “trains! More trains!”. We indulged him in his excitement, after all this was our last train to London for quite some time.
Our journey to the appointment was rather non eventful, after all we now had this routine down. As we slowly crept into Euston station my faith in humanity started to slide downwards. You see in London people walk around in isolated bubbles a lot of the time. This is not true of all people of course, but many have their heads down with their own agenda and as far as they are concerned the world may pass around them, rather than them navigate their way through the world. Why do I write this? Because as we stood by the train doors, with kiddo in a clearly labelled disability buggy, nobody stood and offered us the chance to disembark first. Nope, we were blocked from the doors and walked passed as though we were a figment of people’s imagination. Just one lovely man stood and waited. Thank you sir. You’re a gentleman.
In the waiting room the usual pattern of agitation began to rise in kiddo, but it levelled out so much quicker this time. He’s learning the rules of the game I thought. He happily walked into the appointment and started to play games with the physiotherapist. I was impressed with how long he engaged. But then once again his ADHD traits took hold, his sensory processing began to overload and he became a bouncing pixie who looked like he had been shoved into a pin ball machine. Bouncing off walls, taking diagonal lines of speed across the room. It was clear that assessment time was over.
So what did we find out? Everything I as a lowly mother had been saying for a year. Everything that the NHS had denied my voice the chance to say (actually they didn’t deny me because I shouted too loud but still, the diagnosis was ignored).
Kiddo is hypermobile, far too tight in his Achilles and most interestingly has no strength in his shoulders. This explains his inability to hold or control a crayon. He also has a lot of dyspraxic tendencies but is slightly too young for a diagnosis. Nevertheless, I was right.
I left the appointment with an air or relief and anger surrounding me at the same time. Kiddo needs insoles in his shoes. The NHS physio didn’t even look, and told me he didn’t then. This could have severe impact later in life. The lengths we have had to go through to make sure he doesn’t need to re enter the system at an older age and cost the NHS even more money is simply astounding.
That night neither I or the kiddo slept. The journey home the next day was vile. My head filled with kiddo’s screams and my eyes filled with the pouring rain coming for me from the darkness of the 6am drive home.
When we finally arrived back at our humble abode, my body flooded with relief. We had done it. We had made it to all the appointments. (For now, the sleep clinic will be next summer).
So now the journey begins to get the NHS on board with our future plans for the kiddo. It starts next week, I’ll keep you all informed….
Thanks for reading,