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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Why did my PDA son have to fail in five schools before I was listened to?

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This post is with our huge thanks to:
Special Needs Jungle – http://www.specialneedsjungle.com
for their continued support in raising the profile of Pathological Demand Avoidance Syndrome.

Why did my PDA son have to fail in five schools before I was listened to?

#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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Christmas carols through the red mist

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Today was the dreaded Christmas carol sing along at my sons school. For the last two years he hasn’t coped with all the chattering noise, pre-christmas excitement and expectation to perform. The first year he managed one and a half carols, last year he managed almost one and we left early, and this year he broke down completely. You may ask why do I continue to allow him to participate? The thing is, each year he is a new child, and many things he didn’t cope with last year he manages well this year. He rehearses the songs and enjoys the music, but on the day it all becomes too much to cope with. So whilst the other children sang ‘Rudolph the red nose reindeer’ he huddled in a corner whimpering. His teacher and teaching assistant were lovely and spoke gently to him trying to ease his anxieties, they accepted he needed some space and allowed us to retreat to a quiet room to help him to relax. I got him a plate of food from the buffet and he munched through it whist spinning on a chair, I hoped he would feel comforted, and he seemed to show signs of winding down. I asked him if he would like to leave, he didn’t answer but instead spoke about a wooden tank that he had made and wanted to show me, he bolted off saying he had to find a teacher who could unlock the woodwork room, I caught up with him, as he frantically scurried through the hall ways, shouting, “I must find him!” The carols sang out, ‘Let it snow, let it snow, let it snow’ whilst my son sang out, “Where the f… is he?” I tried to explain to him that all the teachers were with the children and parents singing, and it may be easier to find him if we wait until the end of the carols. He reluctantly agreed, and finally we joined the others in the hall, and for a brief moment I felt relief, but it was brief, he had made up his mind that he wasn’t staying, and this time bolted through all the parents who were teary eyed watching their little ones singing, ‘The Bear and the Hare’ such a beautiful tune –  (http://www.youtube.com/watch?v=XqWig2WARb0). He tried to get out of the school front door, which was locked and supervised, his shouting began to penetrate through the children’s singing, so the children sang louder to try to drown out his noise. We opened the front door for him to leave to be able to get some fresh air and cool off, but it was too late the red mist had descended and he was beyond all reasoning, he kicked every wall, he hit out, punching and swearing loudly, the children continued to sing as loud as they possibly could, eventually my son had to be dragged outside because he was like a wild animal caught in a trap, he desperately needed freeing. Once outside he ran to the middle of the playing field and paced as if still confined by walls. I stood watching him from a distance, but just insight so that he knew I was there for him; my tears stung my eyes as I held them back; I love him so much but when he’s like this, I feel so helpless, he feels out of my reach, as if he is transported in his mind to another place; his pacing eased and he then stood still staring into the sky. The singing had ended and I noticed the children and parents had begun to leave, one parent approached me and said, “Try not to worry my little Tommy has moments like that, he’ll be ok”, I felt like I was about to crumble into a blubbering heap, but I turned back to look at my son who was slowly walking towards me, I felt anxious, I waited and stood still as he approached, he hesitated about a metre away from me but didn’t look at me, he looked down. I wanted to grab him and hug him and tell him that it was alright, that it didn’t matter, that it wasn’t his fault – but instead I stood and waited because I knew that was all about what I wanted to do, I wasn’t sure what he needed; he eventually moved up close to me, still not looking at me he butted his head into me and said, “Im so sorry mum, I just couldn’t help myself, I just want my tank and to go home”. His lovely teacher unlocked the woodwork room and retrieved his tank, “Thank you so much sir, I’m so sorry”. They were all very understanding and reassured him with kind words. On the journey home, he sought reassurance from me too, I wanted him to know my unconditional love for him but I also didn’t want to pretend that nothing had happened, so I said, “I love you sooo much, but it makes me feel sooo sad to see you that unhappy and angry.” Tears rolled down my face, and he looked at me and touched my face, and said again “I’m sorry” (he often says sorry in his everyday conversations, even when it’s not required, he seems to use it as a pattern of speech and I wonder how much he understands), so I said, “it’s not about saying sorry darling, I just wish for you to feel happiness”. Later that evening, after his bath, when he was relaxed we talked some more. I explained to him about how he is getting bigger and stronger (he will soon be eleven, but he is more like the size of a big strong fourteen year old). I asked him, “How did you feel to see me looking sad?” He said, “You still look sad in your eyes, and it makes me feel sad” and I explained to him that was why I felt sad, because it hurts my heart when I see him so angry and sad. He kissed me on the cheek and said, “Smiling is better”, I smiled at him and he smiled back and then said, “A horlicks and two biscuits, that would really make me smile” 🙂

Now he is in bed and settling to sleep, now it’s my quiet time to reflect on how I handled the situation, question what I could have done better, what I should and shouldn’t have said, how I can teach him better coping skills – I type this, I cry, I feel tired, I feel useless, I think about The Bear and the Hare – Why does my heart feel so heavy?

The PDA Resource Page

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The PDA Resource Page

Wonderful PDA informative site, with links, stories, helpful contacts and support.

x Remember you are not alone x