Undiagnosed Day

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by Zowie Kaye
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A blind person tends to have a walking aid just as someone with cerebral palsy tends to have a wheelchair; society has deemed these identifiers as visual indicators that someone has a disability and generally their feeling and attitudes towards that person tend to be more lenient.

I used the word TEND excessively in this paragraph as it is not always the case.

What about when there is no visual aid though, what about when a person’s condition is quite complex that even the doctors are not quite sure, or not willing to diagnose?

What happens then?.......... Let me tell you.

I am not a fan of “labels” or “diagnosis” but these are paramount for the healing process as a parent. 

To have an actual diagnosis allows you to research and arm yourself with all the knowledge good or bad to be able to move forward with this new journey you have found yourself in.

I have a son who is diagnosed with autism spectrum disorder (ASD) and congenital stationary night blindness (CSNB). 

Now apart from his glasses, both of these conditions do not offer any other visuals that you would identify why he acts in a certain way or says inappropriate things. 

You would think he is a rude and maybe a disobedient child, I know you would think this, as I have heard these comments before.  

Once I tell you he has autism though, your face will change and your attitude towards him will become more accepting.

Now think about this in the next situation, the only difference being that the child I am about to talk about was born six years after my own. 

During this time; government changes and cuts mean he is in a state of limbo as are many other children in his situation, who are no longer being given the diagnosis they deserve and need.

My nephew Leo is different to his brother Alex and Cameron (both ASD), He’s a polar opposite in fact, and if you were to describe him – he’s a Tasmanian devil. 

He wreaks havoc wherever he goes, he thrill seeks but dangerously, he is unable to remain still even in his sleep, will often harm others and pets whilst playing as he does not know his own strength, his own pain threshold is unusually tolerant, has a constant need to touch people or textiles, does not conform, cannot sit still to engage in the school environment.

He was dismissed by the professionals as being too young to diagnose or assess and now 12 months on school are trying to schedule behaviour assessments to back up their concerns and send him back through the healthcare system for the second time. 

Their hands are tied because they know that without a diagnosis – they are limited in the resources then can allocate to him for support.

This is a trying time for his mum, who is doing her absolute best and trying to go forward and get the best support she can from school without the back up of a label to make this easier. 

This is draining as a family where the other children are fearful of Leo and isolate him as he is just too rough, where family days out are an endurance test for everyone around and the unhelpful judgemental eyes of onlookers.

Remember though “there’s nothing officially wrong!” – there’s no diagnosis!

Most of all though, this is mentally exhausting for Leo as a four-year-old in a world that is already daunting enough, to actually not be able to have that “break” that the comfort and security a diagnosis provides. 

How much he feels day-in, day-out – being told “don’t do that – stop – why!”, when we all know he cannot physically help it – it’s his condition, the one currently with no name.

We second guess ourselves, our family skills, our relationships and its draining. 

We are a strong family and luckily can do this together – I’m sure many would struggle.

We live in hope and love.

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