toby - carers in bedfordshire€¦ · toby now loves life –on holiday in cumbria with his new...

Toby

©Yvonne Newbold 2019

Yvonne Newbold• Mother

• Founder, The SEND VCB Project

• Author of The Special Parent’s Handbook

• Advisor, NHS England Learning Disabilities & Autism

• NHS Assembly Member

• National Learning Disabilities & Autism 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

Francesca, Toby and Adam


Francesca, Adam and Toby - Now


Toby


Toby – the Birthday King


My Bucket List = Making things better for families like ours


It all Started on Woman’s

hour…..


Hundreds of social media

messages and emails

later….


The first ever SEND VCB Conference


S E ND VC B = S pecial

Disabilities , Violent and

Autism, incl PDA, ADHD


The SEND VCB Project started in April 2017 to empower families in supporting their children to move beyond their episodes of violent behaviour. In just over 2 years we already know of over 400 success stories of children who have significantly reduced the frequency and intensity of these episodes, and many who have moved beyond the violence altogether. When a new family shares their successes, the best bit is that they nearly always talk about how happy their child is now instead of how the violence has reduced. The Project focuses on happy children, because happy children are seldom violent

Six Workshop Topics


You Can Do This!Reducing Violent

Meltdowns

How to Keep Brothers and

Sisters Safe and Happy

Sailing Through the School

Holidays for SEND Families

Puberty and How it Impacts on SEND Young

People

Navigating Your Way to the Best

Outcomes in Meetings

Behind Closed Doors - Dr. Su McAnelly and Yvonne Newbold


How did we do it?

115 families took part with SEND VCB children agedbetween 3–

We asked them questions like this…


….And we had 220,000 words of powerful and harrowing replies….

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?


…..E nough to fill three paperback books . In real time, over s ix weeks , the families

like with courage, dignity

What’s Next?


What else did I learn?

Here are my top ten Parent/Carer Tips….

-

best, but sometimes we’re on our own


NO BOD Y ’S C OMING

IN S T E AD , WE H AV E T O -


2. Don’t worry about the future – Just look after today and maybe tomorrow. I wasted so much time and energy on catastrophising about things that never happened

3. In fact, don’t “worry” at all. Next time call it “planning” and suddenly it seems so much more positive and hopeful

4. Other people can feel like a brick wall

of blame, but just because they think you’re

wrong, it doesn’t mean they’re

right!


Successful caring often means Swimming Against the Tide

Be confident in what you are doing and put your family’s needs first.

If others judge you or blame you, it reflects their lack of understanding, not yours.


5. Everyone expects us to use Traditional

Parenting Strategies

• Hierarchical – “I’m the parent you’re the child”

• Rules and Boundaries consistently enforced

• “Laying down the law” –expectation of obedience

• Sanctions• Consequences• Punishments• Shaming

• But they often don’t work with SEND children

What they may think of our parenting


Too Soft LazySpoiling our

child

Inconsistent“Making a rod

for our own back”

Weak

6. But………

MYTH BUSTING FACT……

It’s not lazyparenting….


You’re doing

Parenting!

It’s the most difficult vers ion of parenting I know©Yvonne Newbold 2019

7. You Can’t Run on Empty


8. Put your own Oxygen Mask on First

9. Self-care is about the little things too

10. You matter too

11. Find Your Tribe


12. You are your family EXPERT

You know your family member infinitely better than anyone else

You are the only person who can holistically and unequivocally speak on their behalf

This makes you are the most important person in any decision-making

Never let anyone make you feel belittled or less than


13. “Tired eyes can’t see the light at

the end of the tunnel”

…..but there is always hope


14. It’s ok to not know what on earth to do next

15. Some days, just get through the best you can in 5-minute chunks, one at a time

16. “Behaviour” can be a negative word….

Don’t think “How can I make them behavemore reasonably?”

Instead think “How can I make them feelsafe, secure and happy?”


17. Ten Top

Believe in themDon’t take things

personallyLook for the reasons why

Lower demandsAvoid saying

“No”

Give plenty of time to process

information

Identify sensory processing difficulties

Give lots of reminders before

transitionsPlan ahead

Prioritise your family member’s

self-esteem


18. Catch the happy moments too – they can so easily get lost and forgotten but they are so precious


19. Never stop believing in happy endings – they can and do happen

Toby now loves life – on holiday in Cumbria with his new Support Team


Toby on holiday in Butlins….


Toby in Richmond Park – a regular day out with his team


How far Toby has come


20. Believe in yourself –look at how far you’ve come, the things you’ve learnt and the skills you’ve developed. You rock!

The SEND VCB Project – Support Group for Families - A closed Facebook Support Group with over 4,500 families coming together for support and to learn from each other

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

The SEND Parent’s Handbook Page - A public Facebook page with over 22,000 SEND family followers, sharing everything to make life easier for families of children with disabilities

The SEND VCB Project – Support Group for Men –a newly launched initiative to encourage dads and other male relatives to talk openly about these issues


toby - carers in bedfordshire€¦ · toby now loves life –on holiday in cumbria with his new...

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