London calling…The Finale.

Ah, London. Over the past few months you and i have become best friends again. Although I grew up in your northern suburbs, but on this most recent trip I realised just how much of a country bumpkin I have become… At first I fell straight back into my north London factory settings. This was expertly illustrated when I navigated the tube from Waterloo station like a pro and was seemingly rude and ignorant of other people’s needs as I took my head down, determined speed walk towards my intended station. But when I took my exit from the underground maze I was confronted by a suffocating surround of tall buildings, not a tree to be seen. Realising I had no clue on how to get to the hospital from the station, I reached for my phone and opened the maps app which also apparently couldn’t cope with the busyness and density of roads and had it’s own meltdown, draining the battery of the dregs of life it was clinging to. Oh good. I’m lost.

The year 2000 me would never have had this problem! There was a reason I chose the quiet swirling of the country lanes over the world’s answer to transport tycoon (apologies if you’re younger than 35, you won’t get that reference), I hate busy places. But still, this is where the hospital was and it was what kiddo needed. So by following the end of my nose I somehow made it to Great Ormond Street yet again.

I didn’t have kiddo with me this time. For appointments that require discussion I simply can’t take him. His overwhelming and chaotic presence prevents me from achieving any kind of conversation with a consultant, so today I was flying solo. And today I was meeting the professor. The time had come to pull together all of the recent assessments (see my blogs on the story of Great Ormond Street) and discuss a way forward. I was nervous, even though I was fairly certain I knew what to expect the nerves still claimed me for their own that day.

So, what have we learned about kiddo? I’ve decided that in this blog it’s just easiest to list the findings and then I will write about the topics it raises in future blogs…

1. Kiddo is being given a diagnosis of autism and adhd. No surprises there but important to note that we (and the NHS in respect to his autism) were absolutely bang on.

2. Kiddo has an extremely complex sensory processing disorder. Whilst we were aware of his SPD, we didn’t realise just how severe it is or how complex it is. That’s because his challenges stretch beyond the reach of the NHS OT professionals (which they admit, finally) and subsequently he now requires a minimum of an hour’s sensory therapy everyday. We will also need the regular help of a professional.

3. Kiddo requires regular physiotherapy for a variety of reasons including poor muscle tone, hypermobility and an inability to use the correct muscles when they are required, including his core muscles.

4. We are now entering a phase of genetic testing to discover whether or not kiddo has Smith Magenis syndrome, which would be the overriding cause of his difficulties.

5. Medication has been recommended for kiddos sleep and adhd – I’m not going to go into the medication debate now. We are still debating plans and before anything else kiddo will need to undergo an ECG before he is able to take medication.

Needless to say I left the hospital with my head in a spin, so much so that I had to get a taxi to Waterloo as my brain couldn’t comprehend navigating the tube. Thank God for coffee with an old friend before I jumped back on the train home. Without it I would have been lost in the deepest depths of my own mind for the next four hours and quite frankly that wasn’t a place I wanted to be.

But overall I came home feeling positive and as though I had finally been listened to. And that alone helped me sleep that night. For the 3 hours that kiddo slept anyway.

Thanks for reading,

Danielle

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