Consultations – October 2015

Consultations are your chance to give big organisations like the NHS and other government bodies your opinions on things that matter to you to. This is our monthly round-up of open consultations that might be of interest to our members.

Managing Antimicrobial Resistance
NICE (National Institute for Health and Care Excellence) is consulting on new draft guidelines for managing Antimicrobial resistance – changing risk-related behaviours in the general population, including schools and childcare settings.
Closing date:  20 October 2015.

Transition to Adults’ Services
NICE is also consulting on a draft guideline for Transition from children’s to adults’ services.
Closing date: 22 October 2015.

NHS Maternity Review
The NHS in England is conducting a a review of maternity services, open to both users and providers of services.
Closing date: 31 October 2015.

Borrow books on Sensory Processing Disorder from our library

A list of books on sensory processing disorder to borrow for free from Cerebra's postal lending libraryThe library has more requests for books on sensory processing disorder than any other subject and the book ‘The Out of Sync Child’ by has been borrowed by more people than any other title.  We have lots of different books covering different aspects of sensory processing disorder.  If you would like to borrow any of them, please email [email protected]

Explaining sensory processing disorder

  • ‘The Out of Sync Child: recognising and coping with sensory processing disorder by Carol Stock Kranowitz – L6326; L6447; L6448 & L6613
  • ‘The Sensory Processing Answerbook: practical answers to the top 250 questions parents ask by Tara Delaney – L6465 & L6604

Practical advice and sensory integration

  • ‘Too Loud Too Bright Too Fast Too Tight: what to do if you are sensory defensive in an over-stimulating world’ by Sharon Heller – L6441
  • ‘Building Bridges Through Sensory Integration’ by Ellen Yack – L6235 & L6603
  • ‘Raising a Sensory Smart Child: a definitive handbook for helping your child with sensory processing disorder issues’ by Lindsey Biel
  • ‘Parenting a Child with Sensory Processing Disorder’ by Christopher Auer – L6355
  • ‘The Out of Synd Child Had Fun: activities for kids with sensory processing disorder’ by Carol Stock Kranowitz – L6384
  • ‘Early Intervention Games: fun joyful ways to develop social and motor skills in children with ASD or sensory processing disorder’ by Barbara Sher – L6558
  • Sensory Stories for Children and Teens with Special Educational Needs: a practical guide by Joanne Grace – L6600 & L6632
  • ‘Gardening for Children with Autism Spectrum Disorder and Special Needs: engaging with nature to combat anxiety promote sensory integration and building social skills’ by Natasha Etherington – L6581
  • ‘Helping Hyperactive Kids – A Sensory Integration Approach: techniques and tips for parents and professionals’ by Lynn Horowitz – L6508

Especially for schools

  • ‘Practical Sensory Programmes for Students with Autism Spectrum Disorder and Other Special Needs’ by Sue Larkey – L6474

Autobiography

  • ‘Coming Through the Fog: a mother shares her journey of her daughter’s recovery from autism and sensory processing disorder to functioning recovery and independent living while providing helpful tips for other parents’ by Tami Goldstein

For kids

  • ‘Sensory Smarts: a book for kids with ADHD or ASD struggling with sensory integration problems’ by Kathleen Chara – C0191
  • ‘Ellie Bean the Drama Queen’ by Jennie Harding – C0184
  • ‘This is Gabriel: making sense of school a book about sensory processing disorder’ by Hartley Steiner – C0241

Clinical theory

  • Sensory Integration Theory and Practice 2nd Edition by Anita Bundy – L6463
  • ‘Sensory Processing Challenges: effective clinical work with kids and teens’ by Lindsey Biel – L6534

To find out more about our library visit our library pages or take a look at the rest of our monthly booklists.

Cerebra Sleep Practitioner Helps the Wright Family

sleeping-boy-1024x683Cerebra also has a team of Sleep Practitioners across the UK who offer help and advice on a variety of sleep issues including settling problems, difficulty sleeping alone and early rising.

Claire Varey, our Sleep Practitioner covering Leeds and the north recently helped the Wright family and specifically 12 year-old Tom Wright.

Mum Claire recently shared her family’s story with us:

“After months of constant sickness our 12 year old son Tom underwent neuro-surgery for a Chiari 1 Malformation. Whilst this was successful and the sickness stopped it meant that Tom’s sleep pattern was completely out of sync. His body clock was wanting him to sleep from about 4.00am – 5.00am and throughout the day.

We tried everything we could think of to improve his sleeping pattern, whilst bearing in mind that he had to recover from a major operation. I cannot fully describe how desperate the situation felt. We felt that we needed specialist help but that it did not seem to be available. I rang FISH (Families Information Service Hub) for further advice and they gave me the contact details for Cerebra.

I immediately contacted Claire at Cerebra and explained the situation. Very quickly she suggested that we undertook delaying Tom’s sleep pattern by 3 hours every day, until it came round to a normal bedtime hour. We implemented it straight away – we were that exhausted and desperate. It wasn’t easy, I can vividly remember waking up at 3.00am thinking the house was on fire because Tom was grilling himself some sausages for tea!

One week later, Claire and Diane (Senior – Regional Officer Supervisor) were booked to come and see us and by that time, we had tentatively altered Tom’s sleep pattern to a “normal” time. We have kept in touch, and I know that Claire and Diane are there if we need them but I am delighted to say that Tom is now sleeping normally and we are once again able to enjoy a family life together.

We are all very grateful for the help Claire and Diane gave us through Cerebra. Without doubt they helped transform Tom’s sleep pattern and gave us support, advice and optimism when we needed it most”.

If you would like to find out more about Cerebra’s Sleep Service, please check our website or contact our Sleep Assistant on 01267 244210 or [email protected].

Sophie Gets Out and About With Her New Trike

The Hibbs family enjoying a bike ride together with Sophie and her trike

The Hibbs family enjoying a bike ride together with Sophie and her trike

One of the many ways in which Cerebra can help families is through our grants scheme where we part fund equipment that could enrich a child’s life.

The Hibbs family recently received a grant for a trike for their daughter, 9 year-old Sophie who has Cerebral Palsy.

It can be difficult for many families to get out and enjoy activities together if their child has a disability and the Hibbs’ wanted Sophie to experience the simple pleasure of going for a family bike ride.

Due to her physical disabilities, this would have been impossible for Sophie to do using standard equipment but mum Victoria contacted Cerebra and was awarded a grant towards the cost of a specially adapted trike.

The family haven’t looked back since! Sophie’s trike means that the family can enjoy the simple pleasure of cycling together through the countryside and has bought everyone closer together.

“Having this bike means, for the very FIRST time, we can go out for a FAMILY bike ride, all together.  This was previously impossible, since our other daughter mastered bike riding.

There is nothing more precious than seeing your child scream out with laughter and having fun.

We can now go out with friends and enjoy a bike ride together, without one of us staying behind with Sophie.

Whilst we’re out bike riding, people now talk to Sophie as they have something to discuss.  It is breaking down barriers and showing how important it is for our disabled community to integrate.

We have had so many comments on what a great bike it is and how much Sophie is loving it.  We are changing people’s attitudes to what disabled children can experience. This bike almost makes us feel ‘normal’!” Victoria Hibbs

If you would like to find out what sort of things a Cerebra grant can part fund, or apply for a grant, please call our parent support helpline on 0800 328 1159 or check our grants pages.

Trolley dash fun launches new toy shop

Dylan Hooper and Joshua Miles along with Cerebra and Entertainer staff after the trolley dash

Dylan Hooper and Joshua Miles along with Cerebra and The Entertainer staff

On Saturday 3rd October, a new The Entertainer toy shop opened its doors in St Catherine’s Walk Carmarthen and they invited Cerebra to be a part of the opening celebrations.

Two families that Cerebra support were invited along to take part in a toy gathering trolley dash and in true VIP style, they were able to see the store before it was open to the general public.

Five year-old Dylan Hooper and thirteen year-old Joshua Miles, supported by Cerebra helper Brandon Jones, enjoyed a one minute mad dash around the store – loading their trolleys with all of their favourite toys along the way!

The boys managed to grab a stash of toys worth well over £400 between them and posed for photos with their new goodies along with Carmarthen’s mayor.

Cerebra’s PR & Marketing Manager Elaine Collins who attended the event said: “It was great to see Dylan and Joshua enjoy themselves so much! Thank you to The Entertainer for inviting us along to do the trolley dash and thanks to staff who were extremely helpful.”

You can find out about the new Carmarthen Branch of The Entertainer here.

Toddle, Waddle, Run half marathon success

Sarah and Annaleigh at the Cardiff half marathon helping support Lucy to toddling victory!

Sarah and Annaleigh help support Lucy to the finish line!

We recently launched our Toddle, Waddle, Run campaign as part of the Cardiff Half Marathon, which this year included a toddler dash and mascot race as well as the main event.

On the 3rd October our youngest ever fundraiser, 21 month old Lucy toddled with the best of them and ended up in a very respectable third place. She was helped along by Annaleigh and Sarah – who was herself preparing to take part in the half marathon the following day.

Saturday was also the day of the mascot race where Cerebra’s infamous mascot Sir E. Bear was hoping to waddle to victory. He had been training hard and had his sights set on the win but sadly it was not meant to be and once again, he came last.

Sunday the 4th October was the day of the half marathon itself and Sarah, who is Cerebra’s Trust Fundraiser, did us proud – completing the race in an impressive 02:15:05.

Everyone at Cerebra would like to say a huge thank you to the team for all of their efforts – even Sir E. Bear!

Don’t forget, you can still show your support by sponsoring the team. Just text CERE12 and the amount you would like to donate to 70070. Thank you!

Like to run? Why not run for Cerebra

Cecilia Bufton

Cecilia Bufton

Hello. My name is Cecilia Bufton and I have just started in the brand new role of Events Co-ordinator at Cerebra.

Cerebra does some fantastic work supporting children and families who are living with neurological conditions, but we rely on the generosity and commitment of our supporters to fund everything that we do. Each year lots of people up and down the country put on their running shoes and challenge themselves to raise money for the charity – and every penny they raise is vital.

I’m looking for people to join in with everything from fun runs to half and full marathons and the gruelling, but great fun, challenges such as Tough Mudder to raise awareness and funds for Cerebra. I will be here to support you, give you guidance in fundraising, provide all the resources you need and even cheer you over the finish line!

To tell you a bit about me, I actually worked at Cerebra about seven years ago as a telephone fundraiser. I left to go to university, but never forgot what I experienced as a friendly charity doing some great work to help families in need. I can simply say that this role is perfect for me and finding a job that has the potential to give you a great purpose and happiness is rare to come by.

So whether you’re a keen runner already or if you have never run before but would like to start, why not have fun, get fit and support Cerebra at the same time. Please get in touch or pass this information on to friends or family and let’s make a difference and keep fit in 2016.

You can contact me on:
Email: [email protected]
Tel: 01267 242 586
Mobile: 07580976497

I look forward to hearing from you.