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John Doe

There once was a man called John.

John had a fall, in a public place but it was an unwitnessed fall and afterwards he was complaining of pain. When questioned it was deemed that his knee was the site of the injury and he was rushed off to be scanned and assessed. All assessments came back clear from injury so John was discharged to a rehabilitation unit to have therapy on the soft tissues damage he was deemed to have in his knee. 

John continued to exhibit signs of pain – he has limited communication which is acknowledged by the hospital staff. He continues to report the pain in his knee. His mother is with him all the time, deemed a bit of an interfering pain to the hospital staff she continues to pester the staff, unable to rest as she is adamant that her son never complains about pain, he has a high pain threshold, something isn’t right.  Her pleas are ignored. John is encouraged to commence a rehabilitation programme – he is advised to mobilise and cycle as part of his therapy. Often crying and reluctant to comply his mother becomes more and more vocal that something isn’t right. After days of no improvement he is sent for another knee scan, which continues to be normal, he also for some unknown reason has his ankle scanned too, both clear. The therapy continues, more tears, mum becoming more and more bothersome. Niggles about lack of care turn into complaints, an interfering mother, a reluctant complex man who won’t adhere to therapy advice. Reports of food being left out of his reach, unable to get to his drinks, not given his glasses or hearing aids.  Meals missed, therapy being pushed, more tears.

Three weeks later John has another scan. After repeated requests from his mother John has a body scan in light of the constant reports of uncontrollable pain it turns out that John has been cycling on the gym with a fractured pelvis. The break had which had been present since the unwitnessed fall been missed on numerous occasions, this is not acceptable but it happens, there is human error.

What is not acceptable is the disregard for the viewpoints and concerns of John’s mother, her repeated voicing of the fact that John was demonstrating signs of severe distress and in her exposing this sign of his condition the attitude that then developed towards both John and his mother is inexplicable. 

John is in his 50s, his mother in her 70s. John has a known learning difficulty and various disabilities. None of these were taken into consideration when his responses to pain were assessed. The person best to interpret his behaviours, his mother, was deemed a pest. Almost unacceptable that she would remain with him all day and was most likely repeatedly told 

‘Go home and get some rest, we’re looking after him’

Is it any wonder that as parents we don’t leave, we don’t stop watching, checking, researching. It’s exhausting but it’s all we can do to try and keep our loved ones safe. Even in a place of care with highly trained and very experienced professionals, no one listened to John or his mother. John was failed. Over and over again.

I do not know John, I’ve never met him but I know he exists and I know his story is true and it scares the life out of me and fills me with fear for Dylan.

One cruel lesson that I am being reminded of on a daily basis. 

Trust no one.

Image from sectioneduk.wordpress.com

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April is Autism Awareness Month: Day 2 – Peace, Love and Understanding 

**April 2nd is World Autism Awareness Day -. For anyone who doesn’t have their head in the clouds and is already AWARE of autism let’s spread that gesture to ACCEPTANCE and UNDERSTANDING.I can’t speak for all people with autism just because I know one and I’m not going to claim to be able to. Just like I can’t speak for all women or parents just because I am one.

But I *do* know Dylan and if I can increase the worlds understanding of Dylan and his autism using everyday examples then hopefully we can all create a society that has insight and understanding for him and others like him.

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The increasing incidences of people being diagnosed with autism means that we all potentially could be coming into contact with those affected by this hidden disability many times a day. 
Imagine waking up one morning and you’re in a foreign country, no one speaks your language clearly and certainly no one understands yours or what you’re trying to say. 

What would you do?? 

Where do you go for help? 

Who do you turn to for understanding?
Dylan wakes up every morning facing these challenges. Please be the one who asks him and others like him, ‘How can I help?’ ‘What do you need?’ 

Don’t pretend not to see him or his despair but offer him comfort and understanding. 

For this is how he will learn to find peace with the foreign surroundings that he faces each and every day and will continue to do so for the rest of his life.

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April is Autism Awareness Month: Day 1 – Queues

April is Autism awareness month. For anyone who doesn’t have their head in the clouds and is already AWARE of autism let’s spread that gesture to ACCEPTANCE and UNDERSTANDING.

I can’t speak for all people with autism just because I know one and I’m not going to claim to be able to. Just like I can’t speak for all women or parents just because I am one.

But I *do* know Dylan and if I can increase the worlds understanding of Dylan and his autism using everyday examples then hopefully we can all create a society that has insight and understanding for him and others like him.

Day 1: Queues.

Dylan can appear rude because he often doesn’t understand or adhere to social rules such as queuing. To Dylan if he wants to buy something in a shop and sees a cashier at the till then he wants to go straight to the till and pay.
That’s just his logic.

We are working hard on teaching him how to recognise queues and the behaviour that we all keep to when queuing:

** don’t stand too close to the person in front,

** ensure you move forward when the person in front of you does,

** don’t skip around

** don’t accidently hit anyone with your basket as you skip (even though it’s all you can do to keep yourself mentally focused on waiting in line.)

These are all factors that Dylan has to constantly be reminded of to maintain a successful queue. Queuing is a social process that you or I may take for granted but the purpose and rules of queueing are lost on Dylan because of his autistic logic; to him it seems like a pointless exercise which prevents him paying for his beloved crisps and getting the hell out of a busy shop.

So please, if he pushes in front of you or doesn’t queue without skipping or humming; don’t stare, but smile and give him time to get it right.

Theres a lot of work going on there.

#autism

#AutismAcceptance

#ItTakesAVillageToRaiseAChild