µ Z} }(dZ ^ ]oW v [ ,v }}l © Yvonne Newbold 2019 For Your

©Yvonne Newbold 2019

Yvonne Newbold [email protected] April 2019

Slide 1 Yvonne NewboldMother

Author of The Special Parent’s Handbook

Speaker; Trainer; WHIS Ambassador, Autism, Learning Disabilities & Families

NHS Assembly Member

Advisor, NHS England Learning Disabilities & Autism

National Learning Disabilities & Autism Awards –Lifetime Achievement Award 2018

School for Change Agents Graduate 2017

PENNA Outstanding Contribution to Patient Experience Award 2016

LDT Learning Disability Champion Award 2015

HSJ Top 50 Inspirational Women in Healthcare Award 2014

© Yvonne Newbold 2019

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Slide 2

AdvocatingEffectively For Your

Child


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• In school • With service providers• On the phone• In writing• At medical appointments• During hospital admissions• In small meetings• In big multidisciplinary meetings


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mailto:[email protected]



Slide 4

Meetings would be easy if it wasn’t for the people at them!


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Slide 5 You’ll meet all sorts of

people, most will only

want the very best for your

child…..


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Slide 6

The professionals we meet are victims of the same overworked systems that we are


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Slide 7

Francesca, Toby and Adam - then


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Slide 8

Toby


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Slide 9

Toby – the Birthday King


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Slide 10 My Bucket List = Making things better for families like ours


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Slide 11

The Special Parent’s Handbook

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Slide 12

It all Started on Woman’s

hour…..


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Slide 13

Hundreds of social media

messages and emails later…..


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Slide 14

The first ever SEND VCB conference


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Slide 15 Four Different

SEND VCB

Workshops


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Slide 16

Behind Closed Doors

A Qualitative Study into the Impact of SEND VCB on Families

SEND VCB = Special Educational Needs and Disability, Violent and Challenging Behaviour

Children aged 3 – 18 who also have an additional need

115 Parent Participants using Facebook to facilitate© Yvonne Newbold 2019

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Slide 17 We asked parents about SEND VCB and…..

Your worst ever day?

What do other people think?

What professional help have you had?

Have you ever felt judged or blamed?

What’s worked? What makes your family happy?

Has it affected your relationship?

How does it make you feel?

What’s it like after an episode?

How does it affect siblings?

What makes a “good” professional? Has there been a

financial impact?


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Slide 18 What’s Next?

This Photo by Unknown Author is licensed under CC BY-NC-ND

Writing a book

on SEND VCBOnline version

of each

Workshops

Live Online

Training


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Slide 19 This is not my fault


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Slide 20

What is this meeting

aboutand who is it

with?


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Slide 21

Write down who will be there, what their roles are, and what the meeting is about.


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Slide 22 What does

my child need from

this meeting? (as opposed to what you want from it)


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Slide 23

Always express needs and wants, issues and concerns, from your child’s perspective whenever possible


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Slide 24

What would a good

outcome look like?


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Slide 25

What research do I need to do to

help make this happen?


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Slide 26 Knowledge is Power….

• Helplines

• Internet – Websites/Google

• Reading

• Re-reading previous assessment reports on your

child

• Information from other parents?

• Anything else?


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Slide 27

What might go wrong?

And how would I put it

right?


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Slide 28

Where are the

roadblocks?

Can I find another way

round them?

What can I do now to

minimise problems?


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Slide 29

What are the THREE

(yes only 3!) key issues my child needs

me to sort out for them?


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Slide 30 Brainstorm all your thoughts and ideas onto paper

Talk them all over with someone else too

Put them in headings

Ask – are they relevant?

Choose the “Big Three”


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Slide 31

What questions

should I ask?


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Slide 32 Brainstorm every question you can think of

At this stage – question everything

Even the questions you know don’t have answers

By writing down loads of questions now, you’ll find the best ones to ask in the meeting


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Slide 33 Are there any

new symptoms, behaviours, concerns or

situations that I need to share?


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Slide 34 Ask your child’s teacher, friends and family about new behaviours, symptoms, developments or concerns

Others may notice things that we as parents haven’t

If possible ask your child and their brothers and sisters

Look at any correspondence from school staff

Read any recent reports

Re-read the minutes or any notes from previous meetings

Ask yourself – has anything changed, or is anything likely to change soon?


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Slide 35

How does each professional make me feel?


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Slide 36 Identify the good guys – they are your allies?

Who isn’t in the “good guy” team, and why not?

How does each person who will be around the table make you feel?

Strong? Weak? Back footed? Valued? Tolerated? Cheerful? Sad? Grateful? Annoyed? Pleased?

How would you like to feel during the meeting?


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Slide 37

Think “US and US”

Not “US and THEM”

Expect everyone to want to help


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Slide 38 It can help to understand how organisational culture can be affected by

Cognitive Dissonance

Wilful Blindness

Confirmatiion Bias


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Slide 39 You are the parent of the child

You are the only person in the room who can unequivocally speak on behalf of the child

You know your child infinitely better than anyone else in the room

You are your child’s expert

You are the most important person in the room

Never let anyone make you feel less that © Yvonne Newbold 2019

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Slide 40

How do I go into this meeting feeling strong, confident, resourceful and resilient?


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Slide 41

The brain in the palm of your hand –

Dr Dan Siegal


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Slide 42

How you don’t want to look during a

meeting


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Slide 43 Three calming techniques before meetings

Breathe three times, deeply, slowly, in through nose, out through mouth

Tree trunk mental strength visualisation

Smile, stop, count to three while reading the room


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Slide 44

Who can come with me?


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Slide 45

Bring someone who….

• you trust

• can look respectable and responsible

• is on the ball and able to listen and reflect

• can rock a clipboard

• owns a pencil


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Slide 46

Malcolm’s Secret

Weapon!


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Slide 47

Malcolm’s Role…..

To be the silent scribe

Until the close of the meeting………

This Photo by Unknown Author is licensed under CC BY-SA-NC


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Slide 48

What’s the meeting really about?


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Slide 49

This is not my fault


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Slide 50 Other people can feel like a brick wall of blame


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Slide 51

▪ Jargon marginalises people and makes them feel less important and less relevant

▪ Question every time you don’t understand a word or phrase. You’re not being unintelligent, using jargon can be thoughtless


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Slide 52

Know What’s Possible…..

Services?

Therapies?

Equipment?

Opportunities

Schooling?

Anything else?


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Slide 53 Small talk beforehand can be very important relationship building

time well spent

Warm smile, open body language – set the tone for the meeting and

be non-threatening as possible

Take and show everyone a photo of your child

Start the meeting with great news about your child – a recent

achievement or great development

If possible, thank a professional around the table for something

they’ve done.

Let them knowyou’re one of the good guys and that you’re

reasonable, kind and easy to work with


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Slide 54 Be calm, polite and friendly

Describe emotions rather than expressing them

No table thumping!

You’ll be working with these people for a very

long time so build relationships whenever you

can

People go the extra mile for people they like

So aim to be their favourite parent!


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Slide 55 Buy time in the meeting to compose

yourself or process your thoughts

Read out loud your concerns and questions

We value “being professional” over “being

emotional”

Address the chair and get things minuted –

particularly good and bad things


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Slide 56 Seek common ground and

compromises always, and never close any doors or become

confrontational

If it all goes pear-shaped, learn from it – what could you do

differently next time?

End the meeting with sincere thanks to all around the table


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Slide 57

Afterwards….

Eat cake

Reflect

Make notes and learn

Email the chair


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Slide 58


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Slide 59 And finally…….

Keep every single piece of paper for ever

File emails about your child as if your life depends on it

Because one day it might


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Slide 60 Breaking the Silence on SEND VCB

A closed Facebook Support Group with over 3,000 parents

SEND VCB A public Facebook Page, open to everyone, sharing information and help for families of children who have violent and challenging behaviour

The SEND Parent’s Handbook PageA public Facebook page with over 21,000 followers, sharing everything to make life easier for families of children with disabilities


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