When I first started this post I began writing about when I was pregnant with Joff and the early days of his life but I realised that can be a whole post to itself. I’m so used to condensing details for various people, that it will take a while to get used to the luxury of posting what and when I want in the blog (within reason and moderation!)

As I compose this, I am really curious as to who is reading this and why…what your existing attitudes are and knowledge of children like my son with complex disabilities and how this will be received by the reader. I do wish I had something like this to read long before I had my kids and certainly in the very early days with Joff, bewildered at the parallel world we’d jumped/been pushed into. I often tell people I had to have my own son at nearly age 30 to know someone with disabilities. The most I had seen beforehand was TV footage of these wee heart-wrenching tots in the yearly event Children in Need (which I now call “Piss on Pity”) on the Beeb. Does that ring true for any of you?

Will you feel pity reading this? Sadness? Perhaps compare your life or your son or daughters lives to his? I would like you to consider this one statement: whatever you read about Joff today or later on, this is our normality. Facts you might think of as hard, or emotionally draining, perhaps disgusting, odd, they may well be – but they are our life; morning, noon and night.

Joff is a 20-year-old young man with multiple and profound learning disabilities; he has very limited understanding of daily life – perhaps the age of a toddler but not quite as savvy. It is a fact that it’s very hard to test the understanding of someone who cannot see well – do they fail tests because they don’t see what to do, or don’t understand what to do? However, I can tell you he’s missed thousands of developmental milestones large and small and there’s many he’ll never make.

He is registered blind, but has what’s called “functional vision” so that he can see to get around and find things like his toys or his juice bottle. He cannot tell us what he is seeing but it’s unlikely he sees details clearly. He’s currently back wearing contact lenses after a 6 year gap off. That’s a classic wee story in its own right.

Due to his renal problems, Joff is short for his age around 4’11” and wears age 14-year-old clothes, he is unlikely to get much taller. However, I’m only 5 foot myself so I’d be struggling much more with the moving and handling I have to do with him, if he were taller. A few Lowe families elect to give their sons growth hormone injections. Joff will never be cosmetically aware of his shortness and I feared coping with a bigger son if he turned out to have self-injurious or challenging behaviours, so we never investigated this option much. It does help with improving bone strength and cardiac health but the prospect of giving Joff a daily injection definitely did not appeal. This is a young man who goes “radge” getting the sleep taken out his eyes in the morning. An injection to make him a bit taller, sooner? Pfft. Nope.

He has low muscle tone and therefore limited stamina for getting around. He learned to walk at about age 5 and his low tone and hypermobile joints have affected his gait, so he walks with his feet at a “10 to 2” position (think clock faces) and has a flexion over one of his knees which limits his mobility. He developed plantar fibromas on both the soles of his feet about 2 years ago. These are a soft benign tumour which are difficult to predict how they will grow. We’re watching them only as surgery isn’t guaranteed to help, but can provoke massive overgrowth of tissue as well as painful scarring.

Joff has no verbal language apart from “beh” which is his word for bed. He does use a simple form of sign language developed at the Royal Blind School in Edinburgh called Movement, Gesture and Sign and he can sign about 20 signs. At this point I’d like to state “non-verbal” does not equal “quiet”!  Joff makes an amazing range of hoots, squeals and grunts and isn’t shy about sharing them. He does understand very simple verbal language, spoken slowly, mostly based around fixed routines, if you don’t give him time to understand and process, he can’t take it in.

Joff has Fanconi syndrome in his kidneys. This basically means that his kidneys cannot concentrate his urine, so he drinks a lot of liquid every day. His kidneys also lose many different kinds of salts and other substances to the urine which would normally be returned to the bloodstream after filtration. Some of these substances are crucial to normal metabolism and pH, so he takes multiple medications three times a day to return his blood chemistry to more normal values. This also has an implication if he is fasted from fluids such as during operations or if he has even moderate sickness and diahorrea and has to have IV fluids immediately.

Joff is and always has been doubly incontinent. Managing this is currently causing a lot of problems as he goes through puberty and I’ll discuss that another time.

He developed epilepsy when he was 8 and am very grateful that his twice daily medication has kept seizures under control for over 12 years now (not superstitious but touches wood anyway)

That’s some of the main things we deal with today with Joff. How do they make you feel? A laundry list of problems? A hard row to hoe? Do you wonder how families like ours cope? As you (hopefully) read this blog over the weeks and months you will know that these are his problems/support needs. These are not what or who Joff is.

Let us know what you think in the comments box…don’t be shy…let’s talk about it….

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