SGPC News - Issue 2

ISSUE

2

NEWS

newfors our

Parent Carer community

2

04

Parent Carer Updates - Early Years - School Years - Preparing For Adulthood - SEN Support

06

Lived Experiences - Complex Needs

10

Talking Points

11

You Said, We Did

12

Parent Carer Support

13

Workshops & Webinars

14

Useful Information

3

WELCOME to the Autumn 2021 edition of

SGPC News

We hope you all survived the Summer break and smoothly transitioned back into education.

Here at SGPC HQ we have been busy bees launching back into face-to-face support at our dedicated venue that we call our Community Base, and our stay and play Little Treasures sessions.

Plus, You said, We did!

We've listened to the feedback you gave us in the annual survey and we've kept our evening virtual support running too and we've secured some funding to help support Parent Carers whose children are awaiting an autism assessment.

your community

for

positive change

4

s e t a upd

PARENT CARER

Little Treasures is back!

We were thrilled to finally be able to reopen our stay and play support sessions. It was

EARLY YEARS

great to see some familiar faces as well as welcome new families too.

Also, Contact for families with disabled children, is running a range of FREE virtual workshops We also facilitate a virtual monthly peer-to-peer support group:

to help families of children under 5, with SEND. Brighter Beginnings

register

covers a range of topics from

grab a cuppa

toilet to sleep, to money matters.

login meet other Parent Carers gain some valuable information and support

Our Early Years support sessions are open to all families with a child under 5, who has additional needs and you can find out more and register here.

SEN SUPPORT SEN Support provides support for children in their educational setting, who do not have an Educational Health Care Plan (EHCP).

Our Annual SEN Survey is now

live

and your views are

vital! Hop on this link and share your views and in return, we promise to share your views (anonymously) with the SEND Clusters people who plan the services - so they can see what's working and where to focus improvements.

Survey closes at midnight on 31st October

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School Avoidance has now become a hot topic

SCHOOL YEARS

We always feedback the concerns of our Parent Carer community and for some time now we have been highlighting your experiences with emotional-based

The newly appointed Principal

school avoidance.

Education Psychologist has been listening to us and conducting research which has resulted in us being invited to co-produce a solution for families and schools

WA

whose children experience this.

We're excited about this

TH SP

TC

H

IS

AC

E

breakthrough and we'll keep you posted - join us for updates!

PREPARING FOR ADULTHOOD Have You Heard Of CLaSS?

A short weekly course starts 3rd November for adults with learning or social

CLI

disabilities who want to learn more

relationships

Service provide a range of

money

course for young adults (19+)

community

HER

E

b Face book espoke grou p

friendships Community Learning and Skills

CK

an d a cc ess ou for r p ad rep ult ari ho ng od

about keeping safe, covering:

Contact Abi Ball 07860 181 353

abigail.ball@southglos.gov.uk

In our Facebook community group we

understand what support school should

often see threads about contacting the

be providing for your child.

EHCP co-ordination team you can find their contact details on the Local Offer.

The

South Glos Way Inclusion Toolkit is

used by education professionals to provide a standardised approach to SEN support.

Taking a look at this toolkit will help you to

South Glos created

SEND clusters to

improve the standard of SEN support across the participating schools (you can find out more about the clusters and the schools that participate here).

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s r e t t a m

LIVED EXPERIENCE

CARING FOR ELLA

by Richard Dicks

One family's heartfelt tribute to their lived experience of having a child with complex needs I now find myself looking back on our unimaginable family journey and would like to share this story in the hope that it will help you to think about reaching out to South Glos Parent Carers, if only to help shape the future of services and make the valuable experience which you have gained on your brave journey helpful to others.

communicate at all. It is difficult to talk, however

Talking about Disability

children with complex needs should have a voice

Of all the difficulties faced by parents and carers of children with complex needs, managing time can be the most significant. Amidst all the hospital stays and late-night emergencies, there rarely seems time to talk about how we are feeling or share our hopes and fears – sometimes we are too tired to

Richard's Top Tips

in society and we promised our daughter this from day one.

Summer Dreams July 2009 was a special month for us, the month our first child was due to be born. My wife had

Nursery and School Spend time getting to know your child’s condition and their extra needs, as you will need this knowledge to inform settings about your child’s

Respite and Self-Care How tired you get from all the extra roles and responsibilities that come with caring for a child with

care.

Explore what is available in your area before you decide on which settings are best.

complex needs will depend on how much support you have available and how you use it. We accessed hospice care and tried most of the services which were offered. These options may not all work out, however they are worth exploring.

Hospital and Intensive Care Hospital can be a tough experience. Staying calm and making sure that you take regular breaks are

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been through all the pre-birth tests,

Things started to seem less certain

phenobarbital and began

including a private nuchal scan. She

in the days leading up to the birth.

undertaking a task which

also followed all the medical advice,

Ella was born late and spent a

neither of us were prepared for.

week in intensive care. My wife

The epilepsy Ella was

also had an infection. It was a

experiencing was so severe that

relief to eventually make it home

she was suddenly able to do

and move on from our early

little. In the days before the

parental concerns.

second admission, our child was able to swallow, sit-up and

Autumn Nightmares Eleven weeks passed and as the leaves started to fall, our daughter became seriously ill. We had taken Ella to hospital weeks earlier as she had seemed quite jittery. At

Ella was diagnosed with 1p36 micro-deletion syndrome at

but this time we were facing

can cause a range of health

something much more concerning.

problems. Ella also had

home when Ella had a second enormous seizure. The medical

seemed well.

forever.

three months, a condition which

hospital, we were about to go

levels of folic acid into her diet - all

this development was gone

the time, we were told Ella was ok,

After assessment in the local

including adding the recommended

even loosely grasp a bottle – all

polymicrogyria – little waves in her brain - which were the cause of her severe epilepsy.

staff arranged urgent transfer to

What created the disorder itself

another hospital. We no longer

was never determined, as our

knew what to expect, and it was

genetic test results were all

days before anyone knew if it

normal.

would be possible to keep Ella alive.

Living With Terminal Illness

Things started to seem less certain in the days leading up to the birth. Ella

Medication and monitoring

was born late and spent a week in

Arriving home for the second time,

intensive care.

we unpacked a bottle of

It was explained to us that Ella would be unlikely to have a long life and that she may

turn over...

take regular breaks are essentials that will help you

much as we could. However hard life became,

to get through the experience. A delirious parent is

Ella’s morning medication was given by 7 am and

no good to anyone.

our hospital bags were always packed, ready. When the worst thing imaginable happened, we were

My wife and I joked that we would have a large curry

completely exhausted but kept going to make sure

after each admission was over – thinking of

we had good final memories to hold on to.

something positive to look forward to can be helpful even if you don’t follow through.

Hospital and Intensive Care The biggest reason we were able to give so much for so long was that we kept routines and planned as

Join With Your Parent Carer Forum Reach out to South Glos Parent Carers, to help shape the future of services and make the valuable experience that you have gained/are gaining on your brave journey helpful to others.

8

s e c n e i exper

LIVED continued

Caring For Ella

experience many health challenges, but for a year,

ambulance. Ella enjoyed the social experience of

we were in complete denial and had convinced

school but struggled with respiratory conditions. After

ourselves that our daughter would enjoy a good

years of transporting Ella to school and back

life. I guess it is natural to find ways to overcome

ourselves, we did try transport for a while, before

impossible situations, and I am not sure how any

resigning ourselves to home-schooling, as Ella was

parent or carer would survive without retaining

spending more time unwell at home and in hospital

some level of resistance to the facts even though

than at school.

we did eventually come to terms with Ella’s fragile

Communicating Concerns

condition.

Throughout Ella’s life, we talked about her condition

Early Years and School

openly with professionals. We stayed in hospital when

Finding a nursery placement was always going to

Ella was unwell and travelled to stay in emergency

be a challenge. We provided all the care ourselves

accommodation when our daughter was away in

for a long-time until we moved and were fortunate

intensive care.

enough to discover a fantastic opportunity group in the area. The support offered gave us just enough time to spend time reflecting on what our lives had become, and the space for me to begin undergraduate studies with The Open University.

School was equally difficult to achieve, but we

looking back, we will always be proud that we were prepared to have difficult conversations and share our concerns and hopes freely

wanted Ella to attend as much as possible. We went into detail about our daughter’s condition and showed up whenever Ella was having a big seizure, requiring rescue medication or an

...to take care of you You can drop in term time (virtually) for

our

Coffee and Chat, check out our wellbeing tips on page 14 - or, if you're struggling, you could book a free, 1-2-1 telephone support appointment with a family support advisor, through Contact's

Listening

Ear service 0808 808 3555. And, remember to chat to your GP about how you're feeling too.

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Saying Goodbye

This was the hardest journey

Ella lost her battle with illness in

imaginable, but each season

September 2020 – one month

of Ella’s life is now a wonderful

after I graduated.

memory to treasure.

We were happy to sacrifice all our

South Gloucestershire Parent

sleep and time to keep Ella in a

Carers want to find ways of

good place, and when the

reaching you, so if you feel

sunlight streamed into the last

comfortable completing surveys

ambulance journey to the

focused on your experience,

hospice, it seemed that the

please start talking and help

golden glow which had been her

shape services in your area.

life was being celebrated right up to her final hours.

every day we had with Ella was precious to us, we would have given everything again, just to be able to try to be good parents and help our daughter to experience the beautiful gifts life has to offer

in loving memory of

Ella Jasmine Dicks 2009 - 2020

Parent Carer Workshop THE IMPACT OF COMPLEX MEDICAL NEEDS AND SERIOUS ILLNESSES ON FAMILIES SGPC are reaching out to Parent Carers in our community who have a child with complex needs or a serious illnesses. We're hosting a free workshop to focus on the challenges faced by adults when having to explain difficult things to children in a way they can comprehend. This will explore the use of stories and child friendly ways of presenting information and also explain how children process this kind of information,

How You Can Help...

and therefore what can be helpful and what might not be helpful.

Volunteer with us - like Richard did -

We will consider adult beliefs, anxieties and fears around talking about

we have a number of opportunities,

difficult things. Parent Carers will receive some written ideas that can be

starting from just a couple of hours a

adapted to different children and families depending on your

month, and spanning over 40 different areas and themes!

circumstances.

The workshop will be delivered by The Sunflower Network trainer Naomi Moore, a play and creative arts and child/parent therapist. Naomi runs

We'll be talking about volunteering opportunities in forthcoming newsletters.

the weekend play provision and volunteer mentoring at Great Ormond Street Hospital and runs training for GOSH, international children's charities and in schools on play, children's emotional wellbeing, mental

WA TC H TH IS

SP AC E

health and trauma informed education.

REGISTER HERE

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s t n i o p

TALKING

TELL US ABOUT YOUR LIVED EXPERIENCES We want to hear your views on SEN Support and Transport

The SEN Support Survey is live now (it closes at midnight, 31/10/21).

COMING IN NOVEMBER

Keep your eye on our Facebook Page and your inbox for details of the new Transport Survey!

HEALTH It's Flu Vaccine Season!

Children with learning disabilities and/or autism are clearly identified as clinically 'at risk' groups, eligible for a free flu vaccine as part of the national flu vaccine programme. Carers (family member or support worker) are also eligible to help protect the people they look after.

It is safe to have your flu vaccine this year.

Do not let anything stop you from getting

The flu vaccine is free because you need it.

your flu vaccine. The doctor, nurse, or

Get the flu vaccine as soon you can to stay

pharmacist will look after you.

well this winter.

You can take a family member or friend

Talk to your doctor, nurse, or pharmacist

along with you to get your flu vaccine.

about getting your free flu vaccine.

The flu vaccine does not always stop you

The flu vaccine is quick and can protect you

from getting the flu. But if you get the flu

from getting very ill (and needing to go to

your symptoms will be milder.

hospital).

If you think you have flu, stay home and rest until you feel better. Call NHS 111 if needed.

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YOU SAID... ...we need support with parenting whilst awaiting assessment at the Autism Hub. We’ve been hearing from Parent Carers about the impact of being on the autism waiting list and struggling to understand their child’s behaviour. The waiting lists were long before the pandemic and now they’ve grown even more – but from what you said we knew you needed help now!

WE DID...

We’ve been consistently feeding back how you feel and what you tell us you need. And, we’re thrilled to let you know that your voices have been heard!

HOT OFF THE PRESS!..

The new Principal Educational Psychologist for South Glos has

Following a successful presentation of your

responded to your views and concerns on

views we've secured funding from our local

emotional-based school avoidance

NHS commissioners (CCG) to create a range

(EBSA) - sometimes referred to

of workshops for Parent Carers in South Glos,

inaccurately as school refusal, by

Bristol, and North Somerset. Each workshop

conducting some independent research

will contain strategies that are useful for

and inviting us to collaborate, represent

parenting a child that shows signs of possible

your views, and co-produce a solution-

autism – whether or not they ultimately

focused strategy for schools.

receive a diagnosis.

We’re jointly hosting face-to-face workshops

More details to follow in the

and online information sessions, running at

next issue!

different times of the day (to ensure as many

WA TC H TH IS SP AC E

of you as possible can find what you need).

The first sessions will run in November and December and then regularly for the next three years.

WHY PARTICIPATE IN OUR SURVEYS?

Your views are captured Your voice is heard Your child's lived experience is shared It's a way of empowering yourself The more voices shared the greater the noise and liklihood of being heard

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t r o p p su

PARENT CARER

OUR COMMUNITY BASE IS OPEN! We were thrilled to reopen our Community Base after 18 months of Covid disruptions and those of you that booked to come along seemed just as pleased as us!

Our Community base is located at the Kingswood Centre on New Cheltenham Road, and it's a haven for Parent Carers to take time for themselves, gain information and chat with others on similar journeys.

Once you've booked your space you're welcome to join us for a cuppa and a chat - we have great facilities:

cosy seating area quiet space garden wheelchair accessible throughout changing room toilet

Support sessions run every other Thursday (term time only) and you can book via Eventbrite (essential to ensure Covid safety). Booking details are emailed out so be sure to register to receive our mailings!

We run two sessions every other Thursday (one booking per person each week): Session 1

10:00am - 11:45am

Session 2

12:15pm - 2:00pm

It's free to attend but we would welcome a donation

towards refreshments. Please book a place for each

REGISTER HERE

adult attending.

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WORKSHOPS & WEBINARS

Ar ra ng su ed bs & id i s es ed pe b ci y u al s ly fo r SG ou r PC co m m un ity

Executive Functioning

BOOK HERE

Executive functioning difficulties are likely to be present in neurodivergent conditions such as ADHD and Autism, but also may be present in brain injury or learning difficulties such as dyslexia.

What are our Executive Functions?

Hosted with Corrina Wood from Platypus Training 16th November, 10am-12pm Cost

What do they do?

£6.50

What can we do to support our children with their executive functioning?

Impact of Complex Medical Conditions or Serious Illnesses on Families We will consider adult beliefs, anxieties and fears around talking about difficult things. Parent Carers will receive some written ideas that can be adapted to different children and families depending

BOOK HERE Hosted with Naomi Moore from The Sunshine Network 23rd November, 7-9pm

on your circumstances.

Sibling Support for a Neurodiverse Child A chance to look at ways to support siblings and how to build resilience in families.

BOOK HERE Hosted with Corrina Wood from Platypus Training 9th December, 10am-12pm Cost

we're still running! online Coffee & Chat support sessions

Details are emailed directly to our members

REGISTER HERE

£6.50

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info

USEFUL

WELLBEING An article on Mind's website highlights 5 key areas of wellbeing: 1. Connect

A local group Southern Brooks has developed

2. Be Active 3. Take Notice 4. Learn 5. Give

HELP LINES

Young Minds - children's mental health Crisis Messenger Service - text 85258

some Wellbeing Resources

Hope Line - suicide prevention under 35's

that can help you focus on

Call: 0800 068 4141 Text: 07860 039967

these areas. They've also

Listening Ear - parenting support

teamed up with South

Glos Council to develop the virtual One You South Gloucestershire wellbeing hub.

0808 808 3555

Calm (for men)

One You contains everything

0800 585858 thecalmzone.net

from links to group walks to

AWP 24/7 Mental Health Response Line

photography and chat.

0800 953 1919

Looking after yourself is vital.

LOCAL INFORMATION Support for Children's Mental Health

SEND Local Offer

Children's mental health & wellbeing

SEND information, support & guidance

One You Mental Health & Wellbeing Support

SAY - Send and You Local information,

Happy Maps

support & guidance

Centralised information for parents worried

for SEND within an

about a child's behaviour or mental health

educational setting

DOMESTIC VIOLENCE

Su pp ort ive ha Pa ve ren ch ts an ge d t na he me ir to ch SA ec Y k o ut the ir n we ew bs ite

National Domestic Violence Helpline 24 hour support, 7 days a week 0808 2000 247

Healthy Relationships For Adults

Julian House

South Glos Council

Support for children

Next Link

Men's Advice Line

Local domestic abuse support

0808 801 0327