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!

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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!

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?

Is it me or is the system a little bit …

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The facts so far…

Annual Review meeting held on 27/03/2013, no word on my son having to move schools next year, why should it come up, after all he can remain another 2 years at his current one.

Letter received 2nd Oct. 2013 case officer from SEN County Council – Authority accepts the recommendations from school that the provision currently in place for your son is appropriate to meet his needs. As your son is due to leave his school next sept (Im thinking WHAT ARE THEY GOING ON ABOUT?) The authority will now consider whether his needs can be met in one of its own special schools at an admissions panel which will sit in November and you will have details on outcome by Dec 3rd.

Right at this point I need to breeeathe deeeeply, I contacted transitions at my sons current school, and apparently because children tend to transition to secondary school at age 11, this is the reason why the County Council are reviewing my sons current school and statement… (right so nothing to do with the cut backs and them wanting to save a bob or two).

Another letter received on 3rd Oct. 2013 from admissions panel to say that if we had expressed a preference for a particular school or provision back in the annual review in March this may be considered, obviously we hadn’t given any thought to it, as our sons needs are being met by his current school and he can remain there until he turns thirteen. NOBODY said anything at the time about transition to secondary!

So Im informed by someone in the know to seek out a school which I can bring to the table for consideration, as the authorities take it upon themselves to bring to the table 3 secondary schools to discuss for my son without parental input. So I contact a local SEN/ASD school to look around, its had some good reviews by parents and since being taken over three years ago, came highly recommended to me as a place which might be suitable. Anyway, I looked around and liked what I saw, so I telephoned my sons current school and spoke to them, they agreed that x school could be the right place for him from September 2014. So then I contacted my sons case officer at SEN County Council and requested this school be considered as well. Case officers reply… “Thats not one of the schools which is being considered, you will have your say once the panel have discussed and decided”. Now call me thick, but how is it that I can only, speak out and have an opinion once the so called decision has been made! So I said to the case officer, “Can you please tell me (trying to remain calm) which three schools is actually on the table for consideration?” So he does in fact tell me, I then told him that I will look closely into these three schools in order to see how compatible they are in order to meet my sons needs. He closed the conversation by saying, “Don’t worry you’re have your chance to make a case against the school which we choose”.

(…. and breathe… must remain calm)!

Of the three schools, two are completely inappropriate and when I spoke directly to the head of admission of each of the schools, they also remarked that they couldn’t understand the thinking behind putting their school up for consideration, they seemed surprised stating, ‘they are specific BSED and not really a school for children on the autistic spectrum’ and on top of that admitted they do not accept children who cannot access the curriculum. My son is on the autistic spectrum with learning disabilities, he’s soon to be eleven, but writes and draws like a five year old and has only just started to recognise letters of the alphabet and do simple sums. On a more positive note, the third school, seems like a possible option, so next week I am going to visit to see for myself, they told me that many of their boys are on the autistic spectrum alongside learning difficulties, the environment is nurturing and the education is moulded to fit around the needs of the child – Sounds very positive 🙂

I will then draw up a pros and cons list of the two schools which I feel are the most appropriate, and regardless of what the SEN county council decide, I have done my homework, and have in hand all the answers in order to have a case to present to them about what is best for my sons future education.

Word of warning – Don’t mess with the Lioness her cubs are paramount

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Summary of findings from PDA questionnaire by Emma Gore Langton

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Emma Gore Langton UCL Educational & Child Psychology Doctoral Research

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Research into the educational experiences of children with PDA:
Summary of findings

This research asked parents who believed their children to have PDA to report on their children’s educational experiences using a questionnaire. Parents were recruited via the National Autistic Society’s PDA conference, and online via PDA support and information forums, and social media and networking sites (e.g. Facebook and Twitter).

Who took part?

Forty eight parents took part. Children were aged between four and 17 with an average age of 10. Thirty seven percent of children were female.

  •   49% had a diagnosis of PDA
  •   63% had a diagnosis of some form of autism spectrum condition (autism, Aspergers,

    autism spectrum disorder/condition, atypical autism)

  •   75% of children with a diagnosis of PDA also had a diagnosis of some form of ASC

    On the Extreme Demand Avoidance Questionnaire, an index of risk measure developed by Liz O’Nions and Professor Francesca Happé at the Institute of Psychiatry, children had an average score of 65, of a possible maximum score of 90.

    On the Strengths and Difficulties Questionnaire, a widely used measure, ninety seven percent of children scored in the ‘Abnormal’ range on their total level of difficulties.

    School behaviours

    In their worst term at school…

  •   69% of children had refused to attend at least sometimes
  •   79% had refused to comply at least sometimes
  •   71% had attempted to leave the classroom at least sometimes
  •   42% had attempted to leave the school site at least sometimes
  •   42% had hurt themselves at least sometimes
  •   48% had hurt staff at least sometimes

    Levels & type of support

  •   60% of children had Statements of Special Educational Needs
  •   A further 10% were currently undergoing Statutory Assessment
  •   56% of children were receiving some level of 1:1 support each week
  •   31% were receiving between 25 and 32 hours of 1:1 support each week

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Emma Gore Langton UCL Educational & Child Psychology Doctoral Research

 Of the 44% of children not receiving 1:1 support, 33% were in specialist provision, and a further 14% were either being educated at home or had no educational provision.

Use of support organizations

  •   69% of parents had accessed Contact a Family
  •   69% had accessed the PDA Contact Group, an online information and support site
  •   65% had accessed Parent Partnership
  •   14% reported accessing the National Autistic Society or its local branches

    Involvement of professionals

  •   88% of children had seen an Educational Psychologist, suggesting difficulties were experienced in school
  •   69% had seen a Clinical Psychologist, suggesting difficulties were not only experienced in the school context
  •   60% had seen a Speech and Language Therapist
  •   48% had a CAF (Common Assessment Framework), indicating the involvement of

    multiple agencies

    Placement types

  •   96% of children had begun their education in a mainstream school
  •   By their second placement, only 64% of children were still in a mainstream school
  •   By their third placement, only 14% were still in mainstream school
  •   At the time their parents took part in the research, only 52% of children were

    attending a mainstream school.

  •   Children were attending a wide range of specialist provision, including ASD (19%),

    EBD (8%), Pupil Referral Units (4%) and SLCN provision (2%).

    Placement breakdowns and exclusions

  •   51% had experienced at least one move due to their educational needs. This included parents choosing to move their child because the school was not meeting the child’s needs
  •   25% had experienced at least one permanent exclusion
  •   8% had experienced at least one ‘managed move’
  •   38% had experienced at least one fixed term exclusion
  •   20% had experienced four or more fixed term exclusions

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Emma Gore Langton UCL Educational & Child Psychology Doctoral Research

Placement success

Despite the considerable educational difficulties indicated by parents’ responses, parents tended to rate their child’s current placement fairly positively, with an average ‘success’ rating of 6/10.

The following factors were identified by parents as defining a ‘successful’ placement:

  1. Child outcomes
    •   Children were willing to go to school and had regular attendance
    •   Children were engaged with learning and made progress, achieving their

      potential

    •   Children were happy and not anxious
    •   Children learnt to interact and had friends
    •   The child and others were safe from dangerous behaviours
  2. School factors
  •   The school was flexible, thinking of the child’s needs on an individual basis and trying different approaches
  •   The school was able to ‘cope’ with the child’s behaviour
  •   The school was understanding towards the child’s needs and difficulties
  •   The school worked in partnership with parents
  •   The physical environment of the school was suitable for the child’s needs

3. PDA specific factors

  •   The school acknowledged and accepted that the child had PDA and needed a PDA approach
  •   The school knew about PDA and interpreted the child’s behaviour within the framework of PDA

    Key Messages

    This was the first research to look systematically at the educational experiences of a large group of children with PDA. The findings suggest that many children with PDA experience high rates of challenges in education, including:

    •   Displaying a range of hard to manage behaviours at school
    •   Requiring high levels of additional support in school
    •   Having multiple professionals involved with supporting them
    •   Experiencing high rates of fixed term exclusions
    •   Experiencing placement breakdowns due to permanent exclusion or its alternatives (‘managed moves’ or parents moving their child)
    •   Being educated in specialist provision
      For more information please contact: emma.langton.10@ucl.ac.uk

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Focus on ability not disability

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http://advocacyinactionireland.blogspot.co.uk/2013/06/look-at-child-not-disability.html#.Ua2i_ZV8tFI