Welcome to the Parent Carers Cornwall (PCC) summer newsletter.

It only feels like yesterday we were pulling together last

summer’s newsletter, I guess time flies when you are busy.

PCC has been busy over the last few months updating our

database because of the new data protection laws. If you know

any families who would like to receive the newsletter, please get them

to email us.

We arranged a transition event at the request of families which we held in

June, the information delivered to families was very informative. We will hold

other information events later this year.

We always welcome new parent/carers to get more involved with the work

we do if it’s something you would be interested in please contact us.

We have held a couple of coffee mornings in different areas of the county

recently to meet new families. If you feel it would be beneficial to hold one in

your area, please let us know. We are happy to bring information and sign

post you to other services.

In August we will be holding our family fun day details of which are in this

newsletter. It’s a time to meet new families and see the children enjoying

themselves, all are welcome to attend.

On behalf of the directors of PCC I would like to thank our volunteers for their

support during the first half of this year.

We wish you all a safe and fun filled summer break and look forward to

meeting some of you.

Kay Henry

For and on behalf of Parent Carers Cornwall

kaypcc@outlook.com

What is Sleep Wise?

Sleep Wise is a programme paid for by the NHS in Cornwall. There are two parts to our

service:

1. Individual sleep assessments are available if your child already sees a paediatrician.

Paediatricians refer for a Sleep Wise assessment. Families complete a sleep diary and are

visited by a qualified member of our team at Hunrosa. This provides a picture of the sleep

difficulty and guides our recommendations to follow. Our assessments are child and

family centred and our recommendations will reflect parenting style.

2. Sleep Wise also offers sessions for groups of parent carers about achieving a good

night’s sleep. The sessions for the PCCC will run monthly, starting in September 2018.

Watch out for details through the newsletter and Eventbrite. Each session will include a

chance to develop your own sleep plan for your child. They will be held in the daytime

throughout Cornwall. An evening session is already planned on 9th October at 18.30 at

MBB Connections sensory space in Threemilestone.

Working with Sleep Wise is an effective way to improve your child's sleep. Most people

report positive results and find that this improves everyone’s family life.

Get in touch

Hunrosa is delighted to provide the Sleep Wise Programme.

Hunrosa

Alusen Business Centre

Barn Street, Liskeard PL14 4HA

Phone: 07401 149973

www.hunrosa.co.uk

Sleep Wise

I write this as a mother of a child with ASD (Asperger's) and

ADHD. This evidence is anecdotal and I have not researched

any of the observations.

My son entered year 7 in 2015 and looking back it was one year of

absolute horror. He was threatened with expulsion and exclusion on

numerous occasions and had internal exclusions/isolations for what

might appear to be minor violations. As parents we had countless

phone-calls home, were summoned before the school governors with

less than one hours notice, had multiple meetings with school staff,

and had a child that came home every day completely shut-down, non-

communicative or disruptive and went on to become depressed with

suicidal thoughts. The knock-on effect for the family was that the other

three teenage children needed counselling, I had to take 3 months off

work with stress and we adults literally dreaded the telephone ringing

wondering what was going to happen next. One could conclude that

my child was deliberately defiant, resistant to correction, unable to

learn and just basically antagonistic. That would be unless you knew

and understood my child.

Today in 2018 I have the same son who is settled in school, is

emotionally much more stable and is ready to learn. Granted that he

is a couple of years older and that other support has been put in place,

but much of that improvement is down to the change in the school

environment and staff support.

Zero tolerance

In 2015 my son's lead professional at school said, “I will punish your

son until he obeys me.” My response to that was “Then you will

certainly teach my son only one thing. To hate you!”

Why does zero tolerance work? Most (neurotypical) children like to

conform. They do not want to be seen as different. You will notice this

in the shoes they wear, the school bags and accessories they have,

their clothing, hairstyle, music choices etc. These children are very

keen to be the same and the threat of something that makes them

different is enough to motivate them to obey.

Children with additional needs are already different. And many of

them know this. They often struggle with low self esteem, bullying, not

understanding the world around them, and certainly not fitting in.

They approach the world with uncertainty and fear and just crave to

be accepted. Treating these children with a zero tolerance approach

just literally crushes them, reinforcing their inadequacies, justifying to

themselves that they are failures, that no-one likes them, and that the

world is unfair.

And unfair it is! We realised very early on, having already had three

children, that we could NOT discipline our 4th child (ASD/ADHD) in the

same way. Punishment did not work. It just made him more resistant,

more defiant, more aggressive, more depressed. As parents we HAD to

do something different. Now many would argue that it is completely

wrong to allow some sectors of the population just to get away with

bad behaviour because they had a disability. And I would quite agree.

A child with additional needs must be corrected, and probably even

more so because they don't learn social norms by observation and they

don't pick up on implied instruction and social circumstance. They

literally need to be taught and learn by rote many of the behaviours

that would be considered socially acceptable – like not

shouting/swearing at a teacher, not throwing objects or hitting other

students, walking sensibly between classrooms and not running etc.

etc. And so, when a zero tolerance approach is applied in these

circumstances to a child with additional needs it truly is unfair, because

they were not being disobedient, they just did not know or did not

understand. My son on one occasion said 'but Mummy, it does not say

in the school rules that I cannot push a drum stick off the table', and

he was quite right. But he still had a whole day isolation! My common

comment in that first year was 'Does he know what he has done wrong

and why he is being punished?' because if he didn't then the

punishment was meaningless. In the same way that it is ridiculous to

punish a puppy one week after his misdemeanour it is equally pointless

to punish any child when they have no idea what they have done

wrong. If that concept cannot be explained then the punishment is

totally without meaning and will be seen as persecution, aggression,

unfairness.

So what is different? As parents we changed the lead professional.

Instead of one who said “You will obey at whatever cost because I said

you will” we now have someone who understands our son, who gives

value and credibility. Someone who is prepared to listen, validate his

feelings about what has happened, help moderate his response on

how to deal with things, still very willing to correct and discipline, but

someone who will show, model, demonstrate and explain what is

expected. This has been an absolute life-line, not only to our son but

also to us as a family. We now have a school-parent relationship of

equality where both parties are respected and listened to. We work

together to get the best outcomes, there are no threats, no fears, and

we have a happy son. After 3 years he is finally in a place where he is

able to learn because he is not on high emotional alert looking how to

defend himself against the next attack, the next bully, the next

punishment (which he never understood why he had them or what he

had done wrong). I have no idea what the educational jargon is to

support this different outlook but it is certainly working. If my son can

find meaning and purpose in life, feel accepted and loved despite his

differences, then he will surely be in the best possible place to achieve

his optimum and be able to positively input into the society around

him.

Jane Gray

Free Family Funday Saturday 11th August 10.30-2.30

Brannel School, St Stephens

Booking through kaypcc@outlook.com

Bring a packed lunch

WHAT IS PARTICIPATION?

Parent Participation can be delivering leaflets for

us in the community, attending meetings on our

behalf, taking part in a working group/project,

sitting on interview panels, attending strategic

meetings and being fully involved and valued,

and can move onto Chairing meetings.

True participation includes involvement of

Parents across all services as we can contribute our

unique viewpoint skills and first-hand knowledge, it breaks

down any barriers between Professionals

and Parents and can have a real impact

in effective service delivery.

We will always try to put in place a

Buddy system for parents, so they can

attend meetings and feel fully confident.

It also gives you an opportunity to learn how the decisions are

made and make a real impact by asking the questions that no

one else does.

We offer full Parent Participation Training at various points in

the county please keep an eye in our newsletters, Ebulletins

and Social Media for future dates.

Cornwall Council commissioned Healthwatch Cornwall to review the four

Adult Partnership Boards (PBs).

• Learning Disability (LD)

• Cornwall Autism Partnership (CAP)

• Older Persons (OP)

• Carers

They expressed a desire that PBs become more consistent in their approach,

have better inter-Board communication and allow the voice of local agencies,

stakeholders and lay people to be heard. The aim is to review the PBs and find

out if service users, self-advocates and carer members, are listened to, part of

the co-production of related strategies and services and are reflective of their

community.

The views and experiences of current and previous PB members and other

interested parties have been sought through, interviews, focus groups,

meetings and an online survey for the listed membership. Easy Read hard

copies of an amended survey were sent out via Mencap.

Cornwall People First, Cornwall Health and Partners

(CHAMPS) and Spectrum. Both surveys were published

on the Healthwatch Cornwall website.

On Tuesday 26th June a Next Steps Workshop was held to look at the

published report and to talk about what can be done to improve the way the

Boards work.

Amongst the many issues discussed were; Membership, Meetings, Terms of

Reference and how these areas reflect across the Boards. The diversity of

people with a Learning Disability and Carers representing on the Boards is not

equal to professionals. We looked at what other Local Authority areas offer.

Should we have a Mental Health PB, a Physical Disability and a Sensory

Impairment Board? Tele-conference and Skype availability may improve

attendance. Currently we do not have a volunteer agreement. It was strongly

agreed that we should plan dates a year in advance.

Many feel there should be a more obvious” Go To Place” for questions to be

answered, rather than bringing individual queries to the Boards. Co-

production is essential as people who use services or care for those who do

know about services are the experts. People who plan and develop services

should work with them to reach a shared solution. Membership needs to

reflect the community and the diversity of that group. Appropriate training

should be offered for Chairs, self-advocates, service users and carers. We

discussed the roles of the Professional membership and with the most

relevant senior council officers, consistent attendance would be required.

NHS Kernow , CPFT and RCHT representation would also be required when

relevant issues are discussed.

Some of the other recommendations are that The Dementia Steering Group

will be a PB in its own right or through cross Board working with the OP and

Carers Board. A new Transitions Group/Board/ Steering Group could work

across the PBs. A financial commitment will be needed, from Cornwall

Council, to ensure that the work of redeveloping the PBs continues in the

longer term.

The meeting finished after a joint discussion how we can make sure the voice

of the community is heard at Partnership Board level, which was productive

and we all look forward to the continued reshaping of the Boards to refresh

and reboot their effectiveness across the County of Cornwall.

Healthwatch Cornwall are carrying out a survey to

find out on behalf of Cornwall Council how people

feel about consultations. The survey can be found

on the Healthwatch Cornwall website:

www.healthwatchcornwall.co.uk

Any other queries, contact on 0800 0381 281

Disclaimer

Every effort is made to ensure the information in this newsletter is correct. Parent Carers Cornwall can accept no liability for errors or omissions and we cannot recommend products or services. Views and opinions expressed are not necessarily those of Parent Carers Cornwall.

Contact Details

E-mail: kaypcc@outlook.com

Telephone: 07973 763332

Website: www.parentcarercouncilcornwall.org.uk