It shouldn’t be this difficult…

Yesterday I had the pleasure of opening up our PDA workshop and telling my story to families enthusiastically looking for new information and knowledge about Pathological Demand Avoidance.

The event started well, full of anticipation as parents were eager to learn new things and have hope that the future was rosier than the current battles they were facing. Unfortunately, whilst my story ends well it doesn’t mean life is ‘plain sailing’ and that was the worst part of my role yesterday – delivering the truth.

As the day unfolded, we heard some harrowing stories from our families. Stories of professionals refusing to understand a child’s presentation, stories of mums being told they were fabricating their child’s difficulties, stories of schools not making reasonable adjustments to accommodate sensory difficulties in children meaning they were no longer receiving an education… All stories that are very familiar to me, having been through a traumatising experience suffering inadequate ‘professionals’ at every turn myself for my daughter.

Whilst we all shared similar experiences, the one thing that was fairly identical in all of us was the sheer passion we each possessed for gaining what our children need in order to function in society and have an opportunity to live their life like any other human being.

One parent described it as equity, and I completely agree. But better still, we can strive for justice. The simplest way to explain this is this infographic I shared on our Facebook page a few months ago.

However, justice is not easy.

Imagine this…

You are fighting on the frontline at war – you are physically and mentally drained. You have not had time to consider your own recuperation from every shot that is fired at you, let alone spent any time on your own self-care. It’s been days since you’ve changed your clothes, days since you’ve had a decent shower or bath, days since you’ve had a hot meal and even longer since you’ve had any sleep – you don’t even know how you’re still standing. But you are. You are receiving constant instructions from your superior to be better; defend better, be more proactive, be better at your reactive approach, take better care of yourself, work as a team and look after your team mates. Get hit by a bullet? Don’t get angry. Don’t retaliate. No, you can’t have a rest. Keep going please.

This is snapshot of a SEND parent’s life every single day. Yes, it is often a matter of life or death. We are not exaggerating. A SEND parents’ stress levels are comparative to that of someone fighting a war.

ON TOP of this, we are fighting for services, fighting for education, being told nothing is available and there is no money. “you’re never going to get an EHCP, I don’t care what the law says” – we have all been told this at least once, particularly if our child’s difficulties are invisible.

ON TOP of this, we are fighting to keep our children under our protection. It is cheaper for local authorities to pay for foster carers (so we stop complaining about our situation, of course, because that is the problem of course?!) than it is to pay for a specialist school placement.

WE, AS PARENTS, ARE NOT AFFORDED HUMANITY. We are not afforded the right to be upset. We are not afforded any emotion whatsoever. But when it suits the agenda of social workers fuelled with intention from the purse-string holders, we are deemed ‘refrigerator mothers’ for not possessing any emotion. When in fact, the ‘system’ beat it out of us years ago.

A lot of the families who spoke to me had been accused, at some stage, of making it all up. This is otherwise known as Fabricated Induced Illness (FII) or Munchausen’s Syndrome by Proxy (MSbP). This is a very, very rare illness, there is scientific evidence to prove this. Yet, it is fast becoming a very popular accusation from professionals tasked with working with families supporting children with SEND. Despite the accusation, not one parent I have spoken to has been offered any support for their supposed illness.

In the room we fortunately had expertise by way of the speakers themselves and 5 experts in our audience too who had booked onto the course to develop their own knowledge. These consisted of a Consultant Psychiatrist, 3 SEN solicitors, an Independent Social Worker, a Child Protection & Safeguarding Expert, a Consultant Occupational Therapist and the PDA Society themselves were there too.

It was agreed that the ‘system’ is just incredibly unknowledgeable, cruel and unethical. The experiences that those shared sometimes could not be stopped without severe legal force and private reports.

In essence, the basic costs required by parents to enable their child with SEND to live the life they’re entitled to far outweighs that of a child who doesn’t present with such difficulties, challenges or differences.

It appears authorities can break the law and will only be held accountable if a parent can afford to do so by way of legal enforcement. This can cost in the region of tens, or hundreds, of thousands of pounds. This means that local authorities prey on certain families’ inability to fund such legal battles and find the information that empowers them to understand their rights and exercise those rights.

The experiences shared yesterday were heart-breaking. In fact, I barely slept last night due to the stories fully consuming my mind and being.

We know why it’s so difficult, we don’t need that question answering. It is all down to money. Our children may as well walk around with a £ sign on their head, as they are ostracised, along with their families, for being different – EVERY SINGLE DAY.

Whilst we gathered the most insightful information about PDA (and the elements around the condition we will need to understanding to gain support) from Dr Soppitt, Cathie Long and Nathan Davies yesterday and a lot of educational boxes were ticked, I’d be wrong if I said we left the workshop with a spring in our step feeling joyful for the future.

We all know we have more battles ahead. We can only do it together.

Sunshine Support have a fully operational support service in Derby, but we also have our online support offered by way of our Facebook messenger facility and you can Email us at any time.

We will be setting up support groups along with our workshops and clinics in 7 more cities throughout 2019. If you’d like to help us, and you’re near one of the following cities then please get in touch. We have to stick together to make this work for our children, if they don’t have us advocating loud and clear on their behalf, they have no one.

It’s not all doom and gloom though, we have the most incredibly qualified and experienced professionals working with us to help you. Whether that’s a case of you having a chat over the phone initially to better understand your next steps or attending one of our specialist workshops to broaden your knowledge and empower you, or even engaging a specialist to undertake assessments. There is something for everyone and we will support you no matter what route is right for you. Just contact us, we will help.

We hope to see you at our future workshops , so we can empower you too.