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!

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 NAS has launched a petition calling on the Government to amend the Children and Families Bill to create a single point of appeal for challenging provision in Education, Health and Care Plans.

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http://specialneedsjungle.com/2013/08/19/nas-petition-single-point-of-appeal-for-ehc-plans/

Take action today by signing their petition

National Autistic Society to include PDA Webinar in 2013

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This is a copy of the email I have just sent to my sons school regarding the PDA Webinar. Thought I would post it here in case anyone wants to use it.

Dear ……………….,

I wondered if this might be of some interest to you and your staff. 

The National Autistic Society ‘Autism in Education Webinar’ will next year, also include Pathological Demand Avoidance Syndrome (PDA) Educational provision and teaching approaches for children with PDA – http://www.autism.org.uk/news-and-events/nas-conferences/webinars.aspx

Although PDA is rarely written as a diagnosis on a statement of needs due to old research suggesting that a dx of Autistic Spectrum Disorder will cover such needs, and keeps it all under one umbrella; PDA is becoming better recognised hence, more and more children are being identified with PDA. It is really important to highlight the additional different needs of a child with PDA from say, the needs of a child with Aspergers or other sub-catorgories of autism.

Children with PDA are one of the highest excluded from mainstream schools each year in the UK. Many of those children end up in Pupil Referral Units, which is a completely inappropriate setting; some children with PDA are in autistic specific settings – recently the head from a well known group of autistic schools spoke out about his concerns that more and more children with PDA were being referred to autistic schools, he strongly believes that this type of setting is completely wrong for this group of children due to (in most cases) their autism needs being milder than and their other overlapping conditions which are complex and requiring a different type of support. Many children with PDA are placed in BSED/EBD schools, which often does not cater for a child with PDA, due to staff lacking in ASD/PDA training, understanding and knowledge. 

PDA children may appear to outsiders to have explosive behaviours, a defiant manor, inappropriate language, the child might be considered as naughty, in some cases the child’s behaviour may be different in school than in the home, blamed also on so called bad parenting skills (even though the other children in the household behave… ‘normally’).

Explosive behaviour is a panic attack not a child being naughty. PDA children have extremely high anxieties, a varying range autistic tendencies combined with irrational/imaginary thinking, obsessive behaviours, with minimal understanding of social skills, cause and effect actions or even concept of time – ALL of this is then topped off with one other contributing factor, which research is finally catching up on, the fact that three quarters of children with ASD/PDA suffer from stomach and bowel issues such as IBS, excess wind, stomach spasms and often resulting in added toilet problems and impacting further on anxieties. The behaviour of a child with PDA may escalate dramatically before a bowel movement or if the child is constipated.

The staff at ………….. are wonderful with …………, but I feel there could be better understanding about his condition (I am continuously learning). I truly hope that your School will become the example of how to offer children with PDA the right learning environment so that all other schools can then follow your lead.

My thanks, kind regards with much appreciation

……………………….