Poem written for PDA Action Day 15th May 2018

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PanDA, me & I

The flip side of me

Is a Panda you see

Its not double trouble

But sure is a struggle

Understand the whole me

Include Panda I plea

Coexistence we strive

To help us all thrive

But Rolling resistance

Best describes our existence

Don’t say to us ‘NO’

Or Panda will blow

Too much long chatter

Just sounds like a clatter

It helps to have choice

So allow us a voice

Communication break-down

Why must we drown?

In opinions so strong

We want to belong

A N X I E T Y free

Is the magical key

A formula to master

If not then sadly disaster!

Panda, me & I

Isn’t a pie in the sky

Excluded from schools

Panda struggles with rules

Being left-out is a sin

We want to join in

Restrain us they say

They’re unable to play

Frustration to take part

Having friends is an art

Anger is what’s seen

But that’s not what we mean

Our rules aren’t the same

Please try not to blame

Its unfair being this way

Wearing this mask everyday

Judgment, cross faces

Confusion & strange places

Take us from here

And remove all of this fear

Tippy toeing not necessary

Parental vocabulary

We need the control

Or becomes a sinkhole

What’s important for you

Might be a battle to choose

No it’s not so absurd

Panda needs to be heard

Help panda, help me

Then you will all see

In order to succeed

Understand don’t impede

Pre-empt & distraction

To soothe Pandas reaction

Information needs time

Slow processing isn’t a crime

Indirect instruction creates

Direct demand devastates

Panda may often be wrong

Avoidance obviously strong

Acceptance of us is a must

Over time it builds up our trust

Empower us to fully function

Minimise our fear of destruction

So keep all this in mind

And then you will find

A better day will unfold

Thank you, our story is now told.

 

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The alternative educational setting looks very different…

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My son is turning 15 this week, so I thought I’d write a little blog update.

Back in April last year I eventually pulled my son out of a very harmful school situation. Shocking details which I will refrain from sharing here. I have no doubt that one day the truth about their lack of care and handling of autistic/PDA children will eventually be known.

Sons statement reads: Autistic Spectrum Disorder with a closer description of Pathological Demand Avoidance Syndrome.

The alternative educational setting is actually better described as a farm. Son began last September and to date, what a difference they have made… my son is actually settled and happy.

Although his journey each day is longer, once there his days are broken up into bite size chunks; a combination of short classroom activities, outside creative lessons, tending the farm animals, learning farm skills, woodwork, sport, outings and overall building self esteem and team work.  Not only is he working towards BTECs but he has the opportunity to learn real life skills which can be used in years to come.

The staff are a unique, dedicated, passionate team. They combine their interests, skills and creativity to inspire the twelve children who attend. Rather than pushing and pulling the children through a tick box driven environment, they adapt, they actually think outside the box and they are making it happen, such a refreshing difference.

Long may it continue.

 

👉 What to reply when told PDA (Pathological Demand Avoidance) does not exist/is not recognised in your area 👈 By Planet Autism

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Planet AutismLiked

👉 What to reply when told PDA (pathological demand avoidance) does not exist/is not recognised in your area 👈

A clinician can diagnose a condition which is evident before them, it does not need to be in diagnostic manuals to do so, the manuals are about allocating diagnostic codes to descriptions of conditions. Having said that, PDA as an ASD, is present in diagnostic manuals as an ASD diagnostic code. For the DSM-V it would be diagnosed as ASD as they diagnose all ASDs under one umbrella now, DSM-V code 299.0 (autism spectrum disorder). For the ICD it would be either (ICD10 F84.0 (autistic disorder), F84.8 (Other pervasive developmental disorders) or F84.9 (Pervasive developmental disorder, unspecified), but noted on diagnostic reports as ASD-PDA subtype, ASD-PDA profile, ASD with demand avoidance profile etc.).

PDA is a specific profile of behaviours and is an ASD. You cannot deny a profile of behaviours exist! It does constitute an ASD subtype which isn’t individually mentioned in the diagnostic manuals – yet. But it’s looking likely that the ICD11 will follow with the DSM-V diagnosing all ASDs under one umbrella, so from that perspective it’s irrelevant. However, PDA does need different strategies and support.

This is why there is a DfE endorsed educational guidance document:

“The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice”
http://www.aettraininghubs.org.uk/…/5.2-strategies-for-teac…

Read this excellent article by Dr Judy Eaton (consultant clinical psychologist with years of experience in NHS and private sector, expert in ASD as well as PDA): https://help4psychology.blogspot.co.uk/…/back-to-school-for… she explains very well how families suffer when LAs and NHS take this attitude of PDA not existing and clearly states that PDA does exist.

https://www.pdasociety.org.uk/education/teachers-guide

“Informs local authorities and schools about the importance of providing support and using appropriate PDA strategies and interventions.”

There is a growing body of research about PDA:

https://www.pdasociety.org.uk/resources/published-articles

https://sites.google.com/site/lizonions/publications

“Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820467/

Point out that if the Department for Education recognises it, that’s central government and that should be enough. The NAS recognises it and they are the UKs major autism charity which is government funded. www.autism.org.uk/about/what-is/pda.aspx

Look on the NHS England website for your area’s Sustainability and Transformation Plan (STP) www.england.nhs.uk/stps/view-stps/ and see if your local plan says anything about making care uniform across the region, losing the postcode lottery, improving varied care etc. because there may be a town in your area which recognises PDA and another that doesn’t. You can use this information as the STP covers everything, including mental health issues.

Have answers for every denial they offer. Don’t passively accept what they say, a lot of it is based in ignorance.

Known NHS areas that have diagnosed PDA (there will be others):

Kilmarnock, Ayreshire and Arran, Scotland
Stratford-upon-Avon, Warwickshire
Stroud, Gloucester, Gloucestershire
Bradley, Stoke, Staffordshire
Liverpool, Merseyside
Todmorden, Lancashire
Sheffield, Yorkshire
Stourport-on-Severn, Worcestershire
Hawley, North Hykeham, Lincolnshire
Wolverhampton, Midlands
Nottingham, Midlands
Northampton, Midlands
Lincoln, Midlands
Birmingham, Midlands
Bristol, Avon
Slough, Berkshire
Reading, Berkshire
East Sussex
Andover, Hampshire
GOSH (NHS) London
Guildford, Surrey

Not quite a Valentine poem!

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The Incident

Ring ring goes the phone

Number I note and voice so distinct

Mrs. Young, oh good you are home

Heavy heart, deep sigh

Chin drops to the chest

Not again, with exasperated cry

 

The common line that I dread

There’s been an incident

That bloody line rings in my head

There’s one thing for sure

It will be written on my gravestone

When I am no more

 

I listen to the chaos unfold

The triggers always unknown

A sudden chill makes me go cold

Coping mechanisms none were in sight

He struggled, he swore

Frustration, fear, fight and flight

 

The incident told with detailed description

Honesty yet delicate in her delivery

Underlined with such great precision

I hold the phone ever tighter

Pursed lips, eyes closed

Will his life ever get brighter?

 

Her reassurance that, ‘This too shall pass’

Don’t worry, calm has now resumed

And he’s happy again, back in his class.

However a report she now needs to make

It’s the same process for all

It’s purely for Health and Safety sake.

 

Not as many incidents so far this year

They say, he’s doing quite well

But there will be more yet I fear.

Ring ring goes the phone

The number I note

But this time I hide, there’s no-body at home!

#PDA Awareness Day- Sunday 15th May 2016

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PDA Awareness Day is Sunday 15th May (thats this weekend:-)

As its National Limerick Day today I thought Id make up a little limerick for Sunday… If you like it, please feel free to share especially on PDA Sunday x

Autism they said is like Rainman
PDA they said is naughty kid syndrome
They have closed minds bound by fear
and would rather we all just disappear.

Judgemental faces they simply cannot relate
Instructing us to medicate & sedate
They really don’t want to understand
Nor will they ever try to lend a hand.

Don’t look down on us with expression so glum
We simply march to the beat of our own drum
My last point for your personal reflection
is wake up people, we are all on the spectrum!

The PDA Society are ready to support you through

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http://www.pdasociety.org.uk/about-pda-society/who-we-are

All the PDA info and support in one location

 

Who we are
The PDA Society’s management committee is made up of a group of volunteers, all parents of a child with PDA.Margo Duncan

National Co-ordinator, support, writing articles, conferences.
Hi I am Margo, mum to a child with PDA and a younger neurotypical child. I live in Sheffield and am a GP. I myself joined this group as a desperate parent in 2007 seeking information on how to parent my apparently unique and not-so-typically developing child. I gained so much support from the people on here after years of struggling that I wanted to give something back.

I took over the role of National Coordinator in 2008. This has consisted of speaking to many parents on the phone and dealing with lots of email enquiries via the website/forum and writing and distributing leaflets on PDA. I have collaborated with Phil Christie, Ruth Fidler and another parent Zara Healey to write the book “Understanding Pathological Demand Avoidance in Children” on JKPublishing. I also co-wrote the ‘What is PDA?’ on the NAS website with Phil after speaking to Lorna Wing on the telephone asking the NAS to put something more substantial on their site about PDA. I have spoken as a parent at the National Autistic Conferences on PDA from the parent perspective and I have written several articles for the NAS and SEN magazines on PDA.

I was pleased we received Big Lottery funding to develop the website as I feel things have come a long way despite there just being a handful of parents with jobs and children filling their (not so) spare time running the group. I am proud of what the group has achieved so far but I am conscious that more needs to be done in spreading awareness and giving out information on PDA. Because PDA is not yet in the diagnostic manuals we have a situation where some people in one area may be getting a diagnosis and some in another area may not. This has to change as these are desperate children with desperate parents and I know from experience just how much the diagnosis helped our family. Without it we would not have been able to use the strategies which helped, schools would have had nothing to work on and I cannot imagine what kind of a situation we would be in now without it. I want to change that for as many families as possible in the future.

Debra West
Social media relations, conferences.
I am married with two children. My eldest son has a diagnosis of PDA, and the youngest is diagnosed with Autism Spectrum Disorder. I am an active volunteer with my local National Autistic Society Branch; who also offer support to local families living with PDA and other autism spectrum conditions. I am currently completing my final year of a dual award degree in Learning Disability Nursing and (generic) Social Work at Sheffield Hallam University. I have previously worked in research and development roles within the steel industry, but became interested in a career involving supporting families because of my own experiences with my children. I have worked in a number of voluntary roles other than my role within my NAS branch; for example as a Home Start volunteer, helping in my children’s school, and also working with the Family Support team at a local Children’s Centre. I have completed courses in counselling, working with parents, preparing to teach in the lifelong learning sector, helping in schools and helping children with special educational needs in schools.

I have presented at two NORSACA conferences relating to PDA, to give an insight into being a parent of a child with PDA. I have also attended a number of conferences and workshops relating to PDA, autism, behaviour support and mental health. I have a dream to work in an autism team who offer support to children, young people and their families from the start of the diagnostic process to adulthood; to give people with autism spectrum conditions (including PDA) the greatest chance to achieve their full potential; and to give families the support they need to remain as a strong and united unit.

Paula Webb
Support, education advice, training.
Hello, I am married to Chris, an Accountant, and we have three children. Our daughter is the oldest, she has now left home and is a Primary School Teacher. Our two sons are on the Autistic Spectrum. Our eldest son is 23, has Asperger’s Syndrome, and lives and works at home. Our youngest son is 19 and has PDA and Autism. He was in mainstream school until 8 years old, tried a couple of Special Schools in Nottingham and is now in a Residential College in South Yorkshire.

I have always done voluntary work but also had a few part-time jobs over the last twenty years whilst raising our three children. I have worked for The National Autistic Society, Notts County Council Home Care Team, Rushcliffe Parents Autism Support Group and latterly for a Charity called The Maze, which supports parents to achieve good outcomes for their Disabled and Special Needs Children.

I have been on many courses including Special Educational Needs and the Law, Social Care and the Law, Supporting Learners with ASD, Positive Handling, Challenging Behaviour etc. I have been to 5 PDA Conferences, I have been a member of The PDA Contact Group for ten years and I am a member of The PDA Society Committee.

I am very passionate about helping parents to care for their children, so that they can achieve their true potential.

Neville Starnes
Support, YouTube videos, newsletters.
I am married to Chrissie and between us we have two sons. Our youngest was diagnosed with atypical autism and PDA in 2009, aged 10. I am a science graduate and have spent most of my life working for companies allied to the construction industry. For a number of years I ran my own successful business, but this became unsustainable as our son’s needs increased dramatically and he experienced a number of placement failures. To preserve my own health and better support our son, I became a full-time carer. In this role I have been a home educator and spent many months providing full time support for my son in his current special school.

I am one of the newer recruits to the committee and consider myself a ‘jack of all trades’ and have an interest in all areas of our work . Outside of my committee role, I provide support to parents and some background information to professionals. I have also produced a number of PDA related videos on YouTube.

Rebecca Thorpe
Member administration, web site maintenance.
I am mum to two children, a girl and a boy. Our daughter received a diagnosis of PDA just after her fourth birthday in 2010. I feel that having her diagnosis before starting school has been of great benefit to her and us as a family, and appreciate that we were very fortunate to be in that position. It saddens me to hear so many stories of failed school placements, accusations of poor parenting and the struggle many families face to get a diagnosis of PDA for their children.

I met Margo at a Sheffield support group meeting, and was keen to get involved to help families looking to find out more about PDA. My background is in marketing and communications, and I was very excited to co-ordinate the production of this web site. I hope families and professionals alike find our web site a useful source of information about PDA, and look forward to helping raise awareness of PDA in the years to come.

PDA posts by Special Needs Jungle

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http://www.specialneedsjungle.com/category/pathological-demand-avoidance/

http://www.specialneedsjungle.com/pathological-demand-avoidance-one-familys-story/

http://www.specialneedsjungle.com/today-is-pathological-demand-avoidance-pda-awareness-day/

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