Wednesday, 14 March 2018

Our PDA Story {Week 30}

So we are already up to Week 30 in the 'Our PDA Story' series, I can hardly believe it. This series started over two years ago and is all about sharing experiences of other families living with Pathological Demand Avoidance. For other families, it's good to know you are not alone in having to find a different kind of way around life.

My blog was started over eight years ago when our youngest girl received a diagnosis of autism spectrum disorder; after several months of research and getting to know our girl, we realised it was a sub-type called Pathological Demand Avoidance (PDA) which she had.

The writer of this post today also has a girl with PDA; the ratio of girls to boys with PDA is estimated to be one girl for every boy (unlike classic autism, which is said to be one girl for every four boys). As has been the case most of the writers in this series, I can draw many parallels between our lives, but as always there are some differences too. 

Danielle is a relative newcomer to the blogging world and sharing her story but she does have her own blog page at www.pdaparenting.com which I'd love you to go and visit - and check out the bottom of the post for how you can help PDA recognition by voting for her in the BAPS Blog Awards!

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To talk about what it’s like to live with a child with PDA is a very difficult thing to do - you almost need to live a day with us to fully understand how it controls every aspect of your life.

To watch your child crumble away in front of your very eyes, regressing by a mental barrier that prevents them from engaging in almost everything, well it’s heartbreaking to say the least.  

To explain that they avoid demands sounds as if they just don’t like the word no.   But when you live with someone whose response system shuts down and they cannot perform daily tasks like drinking and going to the toilet, then you begin to understand why it is described as pathological.

It stops my child from doing absolutely everything that she wants to do - a suggestion of the park and she completely freezes or erupts into a violent meltdown.

She told me, aged four, that she hated her brain and she shouldn’t have been born.

Her words are better than mine to start our story.

My daughter was an extremely happy baby and a joy to be around - she had an infectious laugh that drew in the world around her.  Early on she exhibited a need to control but this was manageable.

We did things normal families do like going to play groups and visits to the zoo - I had another baby and it felt like parenting came naturally to me.

Life felt good.

As time passed on meltdowns would happen if was time to get ready and if it was time to leave home.  I can remember the battles we had if it was time to stop something she was doing - on occasion she even urinated on the floor or forced herself to vomit on the transition.

However, I kind of manoeuvred through these incidents and the good moments outweighed the bad.

She was just strong willed everyone kept telling me - but I felt there was more.  I kept going with Jo Frost style parenting hoping I would see some improvements over time but it made things worse.

Everything changed when my daughter started reception and we were catapulted into crisis almost instantly.

The early distress signs that she was anxious and autistic were overlooked and my parenting was blamed.  

I had raised concerns on numerous occasions regarding her emotional and social understanding, yet this had been disregarded (something I later found out was breaking the SEN code of practice).  The assumption was that she was ‘naughty’ and I was told by the teacher that I was overcompensating.

We hit a block wall with this placement and moved schools, which followed by an email from the headteacher, “good luck curbing her behaviour traits!”  We had been so misunderstood and my confidence in parenting took a massive knock.

A new placement started and the honeymoon period only lasted two weeks.  We were back to disruptive behaviours (but on a grander scale), exclusions and school refusals.

Unbeknownst to me, communication had happened between the two schools and we were rumoured to be a problematic family.   Instead of being a fresh start, we were almost destined to fail.

A few weeks into the move and the reception teacher and TA tried their very best with limited resources and PDA’er was put onto a reduced timetable - she was only allowed in at lunch!

I was told by senior management that she could not be in school as they did not have the resources to cover her - eventually she was allowed in whilst my mum was supporting voluntarily as her 1:1 helper.  If at all my mum left the site then we would get a phone call home to collect her (often undocumented as an informal exclusion).

We had entered a continuum of school refusals, violent outbursts, exclusions and re-integration meetings.  We all crashed and could not see a way out. Her coping strategies ultimately meant that she could come back home to me – a place she wanted to be and in her red mist she would attack staff/children or damage property.  Her ‘fight or flight’ response system was continuously being used and finally she succeeded in absconding from school on many occasions.

I suggested the word autism but it was dismissed by mostly everyone.  She made good eye contact and had persuasive communication and was just viewed as a child with poor behaviour.

Finally I came across the profile of PDA (Pathological Demand Avoidance) and I had the light bulb moment that so many parents talk of.  It was as if the words were written to describe her personally - I realised it was down to anxiety that was leading her need to control.  I always knew she just wasn’t choosing to be defiant.

A referral was made for an EP (Educational Psychologist) to observe her at school.  This was also refused.

Like so many times though this journey we have to fight and fight to access any appropriate services.

Eventually, a report was written to advise school of her needs, but with no understanding of a PDA profile, it was not fit for purpose.

With no education happening and a school wrongly saying they could only help when she had a diagnosis, I began to persistently call to see a paediatrician.

This paid off and after many complaints we were given an emergency appointment.

Enough evidence was gathered following this for her to be diagnosed as having an Autism Spectrum Disorder (ASD).  After much negotiation the words ‘with Significant Demand Avoidance’ were added to the diagnosis.

The diagnosis did not change anything and the school environment could not adapt enough to include her needs.

The daily exclusions took a toll on my daughter’s self-esteem; she would cry at home “I just want to be good mummy.”

So much trauma occurred around going to school that it had a massive effect on my her mental health - she eventually had a breakdown aged just five years old.

I can't even write those words without thinking that I must be writing about someone else’s life.

How did that even happen?

She had been so misunderstood and failed by an entire system that should have been there to support her that she turned not only on herself but on those around her.

The day I got her admitted to hospital was shortly after her telling me she wanted to die and attempting to find dangerous ways to harm her life.

Our whole family hit crisis point and our marriage collapsed - we were so broken.

I was crying inside, we had just needed help, but it was too late.   It will be shocking to know that this was then used as a reason behind her behaviour.

The school and the local authority began ‘actively’ encouraging me to elect to home educate her or to put her in a behavioural unit.

I stood my ground - this was discrimination and neglect.

A month later she was then permanently excluded from school.

My whole life crashed at that very moment and I felt so disconnected to the rest of society.

So I built up the courage to fight back and took the exclusion to an Independent Review Panel.  It was an arduous battle but worth every moment to see that statement lifted from her school record.

We are in the process now of reintegrating into mainstream school and it is such slow and tiny steps.   But this is a placement where she is wanted and it is the best chance we have to rectify the damage of the past.  It may or may not be successful, there are no guarantees. The fact that she is being warmly welcomed and the desire to help break down those barriers to succeed is extremely liberating.

The willingness to work collaboratively between parent and school is being shown in such an inspiring way that I hope other schools will adopt this inclusive ethos.  The role of the senior leadership team is pivotal in this process and this team are restoring my faith in what currently is a very fragmented educational system.

Parenting a child with PDA is so extreme - it affects the whole family.   

There have been days when I don’t know how I was still left standing.  

The times when I needed to run and the darker moments when the urge gets so strong to throw my head against a wall.  I don’t know why that happens and it makes me petrified of the impact on my own mental health.

The blog I write has been my catharsis; it leads to snippets of hope again.

Connecting and supporting gives me a purpose again.  It keeps me grounded.

I hope that anyone reading this will share our story - it may offer some hope to another parent and it may just prevent another child from being so misunderstood.

Thank you for reading!

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Danielle's brilliant blog is over at www.pdaparenting.com, and if you've enjoyed reading this, it would be great if you could cast a vote for her in the BAPS Awards (Bloody Awesome Parents - for more info see my post here). She is a finalist in the newcomer section and it would be brilliant to see a fellow mum who writes about PDA gain some recognition, both for her blog and for PDA! You can vote here but please do it before the 16th March: BAPS Newcomer 2018
Thanks for taking the time to read. It definitely helps if this post is shared further; in groups, on Facebook or Twitter, any way you choose. Just one more person reading who may not have otherwise seen it will help spread understanding, and it's surprising how many people have still not heard about Pathological Demand Avoidance. 


Please do leave comments below as the writers are brave sharing their stories and definitely appreciate support; for more reading about Pathological Demand Avoidance, please see my blog post 'Challenging Behaviour and PDA'. 

PDA can sometimes be mistaken for ODD (Oppositional Defiance Disorder); this post of mine explains the difference between PDA and ODD

To read more examples of living with PDA, visit This is our PDA story. This includes experiences of parents of girls, boys, young and old, and also includes some from other adults diagnosed with PDA. 

If you feel up to sharing your experiences with my readers to help spread understanding (this can be anonymously), please email me at stephstwogirls@gmail.com. 

The PDA Society website is full of useful information and resources, and more good information can also be found on the PDA Resource

The PDA Society are holding a PDA conference in Birmingham on 18th April 2018 and I will be there helping out. Please do stop me and say hello if you are there!



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