Monday, 15 October 2018

The fight against the system

Nearly nine years on from our girl's diagnosis of autism and 'jaded' is a word I would apply to myself. Having thrown myself into various aspects of the system for children with special needs, I've met so many parents who are having to fight. They're not fighting for gold standards; they are fighting for the basic right to education which every child in this country is supposedly entitled to.

The system is not fit for all; it's not right or fair. Battling the system is exhausting but we do our best.
Photo by Valeriy Andrushko on Unsplash
Despite feeling jaded at times, I know that I have the ability to keep learning and to keep fighting, both for my child and for others. So I'll carry on for as long as I am able, recognising that there needs to be down times as we stumble along this path.
A guy I know, father to three children, two of whom have special needs, posted the words below on his Facebook page. I asked if I could share his words here as I felt sure there were many parents out there who would relate to them. Somehow knowing you are not alone brings extra strength.


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We give up .... but we go on. 

We are tired .... but keep going. 

We are broken .....but keep working. 

We have no ideas or strategies left ...... but keep finding ways to cope. 

We can’t cope .... but somehow stumble on. 

We need a rest.... but need to keep going. 

Everyone wants us.... but all we want is time, time to rest, time to heal, time to enjoy life. We fight for what the kids need by law and basic human rights.... but who fights for us. The lawyers fight on the systems side because the system has the money (£250 per hour plus), we fight for our children and their future, they fight for money. 

We fight on, that fight is a battle that battle becomes a war.......we fight on. 

We fight against “the computer says no “ people because the law and common sense says “Yes”! 

We fight because we see the bigger picture not just the little bit that individual is looking at from behind their specific desk in their allocated pigeon hole of responsibility. 

We see no joined up thinking, no coordinated response more a coordinated lack of it. No one wants to take responsibility. No one wants to help “it’s not my job” they say. 

We see no path, we see a maze to keep us twisting and turning til me don’t know where we are. Some give up, tired, frustrated, confused, belittled, and crushed. 

We carry on. We work out the puzzles, we retrace our steps and the set off in the next direction hoping that this way will lead us to the help we need. Never give up we say! 

We fight because if we give up the system will destroy any hopes and aspirations our kids could ever have. 

Minutes turn into an hours hours turning into years tick tock .....but still have no time to get things done....... We feel done in .... but then somehow we keep going on. 

We have the scares of the battles we have and do face - depression, anxiety, ill health, PTSD; the list goes on, we go on. 

We wonder why the system and powers that be don’t see the bigger picture of what they cause and how if they changed things what they could achieve. We wonder on. 

We are isolated, people don’t know how to talk to us, so they talk about us. They talk of half truths or no truths. We support each other. 

We help others and that makes us feel good. 

We feel bad and angry when others take advantage of kindness because of their own greed. We stand up to them, and for the people who are in need. 

We feel down trodden and exhausted then we hear the words, “ I love you! “ then we start all over again ♥️♥️♥️♥️. 

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To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?



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