Family fun day raises over £300

Poster for the fun day

Poster for the fun day

On 9th August a family fun day was held at Lower Grange Community Centre in Allerton, Lancashire in order to raise money for Cerebra.

The whole event was arranged by parent Rebecca Kent who had very personal reasons for wanting to raise money for Cerebra.

Rebecca’s story started when she went for a scan 19 weeks into her pregnancy. She was told that her baby had Dandy Walker Syndrome, Hydrocephalus and other brain complications.

“I was devastated as he has my first pregnancy.  I named my little boy Joseph George, and 4 days later I gave birth to him. He was born sleeping,” Rebecca said.

Rebecca wanted to mark the 10th Anniversary with something positive that would benefit others. Working with family and friends, she decided to organise a family fun day to raise awareness and much needed funds.

Rebecca really threw herself into the task of organising the day. She spent months writing to lots of different companies asking for donations and roping in as many people as possible!

August 9th, the day of the fun day, also marked the anniversary of Joseph’s funeral and Rebecca felt it was right to hold it on that day.

The day was a huge success with tombolas, games, bouncy castles and plenty of stalls to keep everyone entertained!

The final total raised from the day was £349 and Rebecca intends to bump that total up by doing some more more fundraising through the rest of the year.

A big thank you to Rebecca for her support.

To find out more about what you can do to help raise money for Cerebra, check out our Community Fundraising page.

Karen continues year of challenges

Karen taking part in one of the 5k Run or dye challenges

Karen taking part in the 5k Run or dye challenge

You may remember a little while ago that we reported on a couple who were completing a year of challenges together in order to raise money for Cerebra.

Karen Hamilton kicked off her series of challenges in spectacular fashion by completing the “Whole Hog” – a 10K run through muddy bogs and obstacles on a very chilly day in October!

Since starting last year, things have been going from strength to strength and Karen shared some of her latest challenges with us.

She recently completed the 5K Run or Dye race in which she got completely plastered in coloured paint. As is evident in the photo, it was a very mucky but colourful day!

Karen has also held two “monkey tombolas” over the last couple of months. This in particular has been one of her most emotional challenges as it involved her saying goodbye to her collection of monkeys which she has amassed over some 30 years.

“It was sad to say farewell to more of my collection of monkeys but to see the happy smiles on children and adults when they won made it worthwhile,” Karen said.

This October will mark a year since beginning of the series of challenges and Karen is hoping to mark the occasion by making a  Guinness World Record attempt. She hasn’t disclosed any further information about it as yet but it promises to spectacularly conclude a very challenging year!

“I am really enjoying these challenges as I am trying things I’ve never done before. I am now hooked on running and still do regular almost weekly 5k park runs. I’m slowly building up to do a 10k run or even a half marathon – not bad seeing I only started running mid-February!” Karen told us.

If you would like to support Karen and partner Rick, please visit their Virgin Money Giving page.

Families go wild at Knowsley Safari Park!

An Ostrich at Knowsley Safari Park

An Ostrich at Knowsley Safari Park

Cerebra’s network of Regional Officers arrange events all year round and all over the country.  Our recent Knowsley Safari Park event offered the whole family a chance to have a fun day out.

On the 6th August, seventy five parents, carers and children had a great day out at Knowsley Safari Park in Merseyside. The families drove around the 5 mile safari drive and saw lots of animals close up including,  lions, zebras, elephants, giraffes and of course the famous baboons who were their usual playful selves and got on the vehicles as they drove round. There was also a sea lion show and birds of prey display.

Despite rain in the morning all the families had a great time seeing the animals close up. The sun came out at lunch time and everyone could enjoy the outdoor play activity area and funfair.

The feedback from the families has been great.  Lots of families told us that their children had a great time, loved the Safari Park and thanked Cerebra for arranging such a good day out.

To find out more about events that we have coming up, keep an eye on our What’s On page.

Could you be an Ambassador for Cerebra?

Cerebra Ambassadors group photo

Some of our Ambassadors at the Cerebra Children’s Awards 2014.

Cerebra has a team of ambassadors, made up of parents, carers and professionals, who are passionate supporters of our work.

Our ambassadors come from all sorts of backgrounds and walks in life – what they share is a passion for the work that Cerebra does and a desire to let other people know about it. They help to raise awareness of the charity in their local area giving as much or as little time as they can spare. We really couldn’t do it without them.

Family relaxing togther

The Hoyle family

David and Mary-Jane Hoyle are just two of our enthusiastic Ambassadors . They support Cerebra because when they were told that their beautiful 18 month old daughter Annie-May had massive brain damage, cause still unknown, they felt lost and alone with nowhere to turn: “Cerebra have been with us on our journey and we can’t praise them enough”.  In supporting Cerebra the Hoyles have attended and given talks about the charity, raised money through sponsored events and appeared in a promotional video. You can meet the rest of the team here.

If you think you could be an Ambassador, or know someone who would, please get in touch with Elaine Collins on 01267 242583 or elainec@cerebra.org.uk. We’d love to hear from you.

If you’d like to find out more about the Ambassador role you can download the role profile here.

Cerebra Ambassador Role Profile

£10,000 donation in honour of Frankie

Lisa and her son Frankie

Lisa and her son Frankie

Cerebra has just received an unexpected donation for £10,000 from The Wilmington Trust.  And it’s all thanks to campaigning mum Lisa Benson and her three year old son, Frankie.

Lisa told us the story:  “I’ve been fundraising for my son to have ABA Therapy (Applied Behavioural Analysis) for severe Autism since he was 3 years old.

I found it very frustrating trying to get my young son diagnosed at the age of 2, when it was very clear to me he had some severe developmental issues. Once we had finally seen a specialist and had an official diagnosis I started to extensively research my son’s condition to find the best way to reach out to him and understand his world but also improve his life and help him to learn.

Even the simplest tasks like clapping hands and responding to his name were completely beyond his capabilities. I read about ABA being the only (scientifically proven) therapy to have an enormous impact on Autistic children and knew that I had to find a way to cover the costs of this therapy and help my baby.

My son’s father walked out on us when Frankie was around 6 months old and has never supported him financially. As a single parent and full time carer I couldn’t return to work so I had to find ways to raise the funds to pay for ABA and that’s when I started “Frankie’s Fight”, a crowd funding page that I promoted on Facebook. I have to date raised over £14,000 for Frankie to receive private therapy, which has had such a positive impact on him, literally life changing.

Lisa and Frankie

Lisa and Frankie

I organise sponsored events, race nights, raffles, boot sales and beer festivals in order to get funds but I also contact people I went to University with and other friends and relatives to see if their workplaces can offer us sponsorship or if they can donate prizes…some offices have held bake sales and mufti days for us.

I contacted a friend at Wilmington Trust and he put forward Frankie’s fund for a donation. Because we are a good cause and not a registered charity they were unable to donate any money but they were in the process of choosing some charities to donate to and ask me to supply the names of five charities that help disabled children, like Frankie. They said they would give them £10,000 each in his honour. I received a text two months later from my friend saying my chosen charities had been sent cheques!

I’m delighted that I nominated you. I also nominated Chestnut Tree House, PACSO, Chichester Down Syndrome Support Group and Caudwell Children and all got £10,000. Wonderful deserving charities that are very close to my heart and have all at some point helped a child I know. I was looking for help for my son and although I didn’t achieve my goal, I did manage to get something good out of my efforts and that pleases me”.

We are very grateful to the Wilmington Trust for their generous donation and to Lisa for nominating us.  We wish her and Frankie all the very best.

Becoming active in your community

community feteIn UK society, the position of a family that includes a child with additional needs has changed. On the one hand, there are real efforts at ensuring a situation of equality, inclusion and accessibility for disabilities, and it is much rarer these days to encounter people with disabilities being hidden away from everyday life. On the other hand, many people complain about a reduced sense of community, not knowing neighbours so well, and belonging to shifting family structures where many times one parent is looking after children with no other family members to share the responsibilities.

The normality of life can become elusive when extra caring issues, especially concerning travel, going out, different timetables and tiredness add another isolating factor. Some readers may like to consider ways of easing this by deliberately plugging into the community. Individuals vary in how much, and what kind of social contact is comfortable. Some are content with casual meetings like taking children to schools, clubs, sports and so on, or shopping. However, there is evidence to suggest that people who are actively involved in not just one, but more than one social group are more resilient1.

community2Why more than one? Perhaps because all groups have ups and downs, and a “down” within a mainstay grouping that is heavily relied upon (e.g. extended family, parent support group or local interest group/society/club) can cause its own stresses or become unavailable. Another advantage of connecting to more than one group, in practical terms, is the wider range of personalities, knowledge, ideas and acceptance that members can share with each other.

Many children’s conditions reduce the likelihood of being able to keep to set times for going out to things, but it might still be possible to get out on enough occasions to maintain a link with a group, to host others at home occasionally , or to belong to ad hoc groupings that are less dependent on a timetable (such as children’s horseriding, or a local café, park, theatre, children’s entertainment venue), or Internet-based but also locally-organised interest groups like Freecycle, Freegle, Internet cafés and skills-/time-sharing / volunteer groups. Some people thrive on organisation, while others find it restricting – some of these are activities that do not require you to become organised in yet another way.

Some may like to link into telephone-based befriending to expand their social circle or just have a chat now and again2: charity-based befriending services are not the same as helplines that are focused on issues (such as Cerebra’s practical helpline 0800 328 1159 or counselling helpline 0800 043 9385), and not exactly like personal friendships either.

car-boot-saleAnother way might be to involve the children themselves in community activities, giving some thought to what you would both / all enjoy doing3. Each area has a Council for Voluntary Organisations (CVO, or sometimes a different name) that will have a list of things going on in the area; or you could invent your own ways. For example, some families regularly take a stall at a car boot sale, where there is a sense of camaraderie, and the child can interact or not in an easy-going atmosphere.

An important aspect of taking part in things is negotiating the variety of responses that other people have to a child who appears different or interacts in an unusual way, or who does not appear to have unusual ways of interacting but actually has. There is enough in this for another article – any thoughts you have towards that would be welcome.

I hope these ideas will light up someone’s life!

References

  1. Combating isolation. Article by Dr Alan Tepp, 2010, http://drtepp.com/features/combating-isolation/
  2. Examples of telephone befriending include:
  3. Many ideas in: Making a difference: how to become and remain active in your community, a guide to volunteering, http://www.state.sc.us/dmh/client_affairs/volunteer_guide.pdf (South Carolina Dept of Mental Health). More ideas, with a slightly different approach, at http://kindnessuk.com/community.php (Kindness UK).

Events – August 2015

EventsFree Anti-bullying workshops for parent carers
The first is in Leicester on 7 September 2015, then they are planned to take place in a number of venues around England until 30 November.  (Contact a Family and the Anti-Bullying Alliance).

Kidz Scotland
17 September 2015, Edinburgh.
Free exhibition dedicated to children and young adults with disabilities and special needs, (Disabled Living).

National Portage Association (NPA) conference
2 and 3 October 2015, Northampton.
Portage is a home-based educational support method for pre-school children with additional needs.

Consultations – August 2015

Equality and Disability
A House of Lords Select Committee on the Equality Act 2010 is looking for evidence about how well equality is working for disabled people.
Closing date: 4 September 2015.

Special Guardianship Review
Government consultation for a review of Special Guardianship Orders for children, (Dept for Education).
Closing date: 18 September 2015.

Future Social Care Topics
NICE (National Institute for Health and Care Excellence) is seeking social care related topic suggestions for new guidelines, (NICE are responsible for social care quality standards and guidelines for England).
Closing date: 9 October 2015.

Healthcare in Wales
Consultation about proposals to alter systems related to the quality of healthcare in Wales, (Welsh Government).
Closing date: 20 November 2015.

News – August 2015

Stack of newspapers

Our monthly round up of news and legislation of interest to our members.

Children’s Health Services
From October 2015 in England, public health services for children aged 0-5 years are planned to transfer from the NHS to local authorities, including health visitor checks etc. Information relating to the transfer can be found at: https://www.gov.uk/government/publications/transfer-of-0-5-childrens-public-health-commissioning-to-local-authorities (Dept of Health and Public Health England).

Moving from an SEN Statement to an Education, Health and Care (EHC) Plan
For children in England who are due to be transferring from an existing Statement of SEN to an Education, Health and Care (EHC) Plan from 1 September 2015 onwards, local authorities have been granted more time to put them in place (from 16 weeks to 20 weeks). A network of central government funded Independent Support (IS) agencies can already assist families with the new plans, giving up to 8 hours of free support. This includes families who are moving to England from other parts of the UK. The agencies are listed at: http://councilfordisabledchildren.org.uk/what-we-do/our-networks/independent-support/find-my-independent-support-provider (Council for Disabled Children).

Friends and Family Test
New guidance on access to the Friends and Family Test, a questionnaire given to people receiving health services in England about their experience of the services. It recommends ways to ensure that vulnerable people, including children and those with learning disabilities, can be helped to understand the questions and give their feedback, http://www.england.nhs.uk/wp-content/uploads/2015/07/fft-guidance-160615.pdf.

Contents of the summer budget 2015
https://www.gov.uk/government/news/summer-budget-2015-key-announcements (H.M. Treasury).

Legislation

Legislation can be found in full at: http://www.legislation.gov.uk/.

2015 No. 1512, The Child Benefit (General) (Amendment) Regulations 2015
From 31 August 2015, to add the “United Youth Pilot” (Northern Ireland) to the list of approved training for Child Benefit purposes, and to remove types of training that are no longer offered.

2015 No. 1510 (L. 19), The Tribunal Procedure (Amendment) Rules 2015
From 21 August 2015, to update a variety of rules for first and second tier tribunals, some of which are relevant to children with special needs in different parts of the UK.

2015 No. 286, The Scottish Public Services Ombudsman Act 2002 Amendment Order 2015
From 16 July 2015, places ILF Scotland (the Scottish Independent Living Fund) among the organisations that can be investigated by the Public Services Ombudsman.

2015 No. 1563, The First-tier Tribunal and Upper Tribunal (Chambers) (Amendment) Order 2015
From 1 October 2015, widens the range of matters that the Tribunals can deal with, including childcare payments appeals.

2015 No. 1562, The Childcare (Miscellaneous Amendments) Regulations 2015
Mostly in force from 1 January 2016, and the remaining part from 1 September 2015. The amendments affect the premises where childcare is provided; the certificates of registration for providers; and fees in connection with registration [applies to England].

Resources – August 2015

ResourcesOur monthly roundup of useful articles and resources for families who have children with additional needs.

Autism and vacationing – ten tips for predictability
Tips from the mother of two children with autism, about planning for easier travel and holidays. (Autism Awareness Centre).

Science podcasts
Short podcasts from the journal “Nature”, summarising developments and issues of interest in science, including brain sciences.

Check if you can get Legal Aid
An online tool for people engaged in matters that might need to lead to attendance at a court or a tribunal. A checker is also accessible from the Civil Legal Advice (CLA) Gateway, https://www.gov.uk/civil-legal-advice. There is a Civil Legal Aid Eligibility Calculator for use by advisors to see whether their clients can access it, http://civil-eligibility-calculator.justice.gov.uk/ (Ministry of Justice).

Helping you access free childcare for your 2, 3 and 4 year old [in England]
A guide that particularly applies to children with disabilities,  (Irwin Mitchell solicitors with a group of charities).

Simple Stuff Works
Company offering training, advice and aids for positioning and postural care, for children whose condition potentially affects their body shape.

Communication Courses
One-day courses on Intensive Interaction, a communication approach for those who live or work with people who have learning difficulties that make engagement, understanding and expression exceptionally difficult, (Intensive Interaction Institute).

Human Rights Toolkit
A practical resource for using human rights to make a difference in your community. Designed to help elderly people but also applicable to others, (Age UK).

Teaching and play in the early years: a balancing act
A report and a set of four videos produced by Ofsted to emphasise that learning and play are not separate from one another.

Activities for Children with Additional Needs
Collected information on specialist providers of activities for children with additional needs, (National Deaf Children’s Society).

Disability coaching
An interesting set of resources collected for sports coaches who may be working with disabled people. There is also a section of resources on coaching children, (Sports Coach UK resource bank).

Summer Budget: what does it mean for families of disabled children?
A breakdown of the effects on family finances, mostly but not only from April 2017 onwards, (Contact a Family).

SEND Pathfinder Programme
A report on the Pathfinder SEND programme in England, where families in selected local areas tried out the new service programme for children with additional needs. The report includes many of the insights they had about the process, (Dept for Education).