Category Archives: Practical Help

Independence for Myles with our Oxygem

Our creative team of designers at our Innovation Centre and our Oxygem recently helped Myles to become more independent. Myles’ mum Vickie tells us more – and take a look at  the great video at the end!

We are a family of 4 – me, my husband Neil, Noah who is 6 and Myles who is 2 1/2.  Myles was born a seemingly healthy full term baby boy. But he struggled to thrive and was always catching viruses, we seemed to be at the doctors every week. He developed pneumonia at the age of 5 months and was hospitalised. We were sent home with medication but over the next few weeks he deteriorated and ended up being taken into intensive care where he required ventilation.

It was thought that Myles would be able to be weaned off oxygen as he had suspected broncholitis. After weeks in hospital trying to wean him it was obvious something else was going on with his lungs. For the rest of the year he was in and out of hospital having investigations and surgery. They decided to do a gastrostemy for additional nutrition as growth was a vital part of his care. After a lung biopsy and genetic screen he was diagnosed with Surfactant Protein Deficiency Type C. This is a condition which results in the lack of tension in the alveolar sack minimising the surface area for gas exchange.

Myles has been dependent on oxygen ever since meaning he always has to have an adult with him to carry the oxygen cylinder. Myles has done amazingly well hitting his milestones albeit a little delayed. He has started going to nursery just a few hours a week so I wanted to try and find something that would give him a little more independence.

I spoke to our care teams but there didn’t seem to be anything available through the NHS or privately. I even started to look at portable concentrators as these are much lighter but unfortunately these work on a pulse flow rate. A child’s breath intake is not strong enough to trigger the release of oxygen so these are only suitable for adults.

Through searching the internet I came across Cerebra and your Innovation Centre. The Oxygem looked perfect for Myles as he’s strong enough to push a trolley and it would enable him to have a level of independence. We were so overwhelmed he was accepted to receive one of the prototypes. He took to it straight away and now enjoys walking round the park with it and walking on the school run.

Myles’ condition means that as he grows he will hopefully be able to have stints off the oxygen. But it’s during levels of activity that he really needs more. The Oxygem enables him to move around with the cylinder when he needs it most. He is due to start school September 2019 and I think the Oxygem will really allow him to integrate with his peers. The fact that the handles can be changed for longer ones as he grows is brilliant.

Watch Myles in action

Can our Innovation Centre help your family? Don’t hesitate to get in touch for a chat.

Parents, researchers and charities join forces to create new resource for parents of children with learning disabilities.

The University of Warwick, Mencap, Cerebra, and the Challenging Behaviour Foundation have teamed up with parents of children with learning disabilities to produce a new Parent’s Guide on improving the well-being of young children with learning disabilities. The guide is being launched today (25th May) in Belfast and you can download the the booklet here.

Research has shown that young people with learning disabilities face more barriers to achieving well-being than children without a learning disability, but also that there are practical steps and strategies which parents can take to change this.

Combining the practical wisdom of parents with insight from the University of Warwick’s twenty years of research into the wellbeing of families of children with a learning disability, the new guide presents hints and tips, backed up by research, for parents to use in their family lives to promote the well-being of their children and to develop positive family relationships.

The Parent’s Guide has been created to help parents support the well-being of children from 0 – 5.   It offers suggestions on ways to build and support warm, positive family relationships, and also includes a chapter on activities parents and siblings can do to support the development of a child with learning disabilities.

Each chapter includes advice from parents, suggested activities, and space for personal notes and reflection.

Parents invited to give feedback on the guide befor its launch said:

  • “The tone of the booklet is really reassuring, and easy to understand. It makes a nice change from the booklets we usually read that are full of jargon.”
  • “The best bit of the booklet for me is hearing about other people’s experiences and coping mechanisms. It makes me realise that we aren’t alone. I just wish we had had something like this when our son was born.”
  • “Every chapter is so relatable, and it’s so useful to read about all of the activities.”
  • “I want to complete the reflection activity and review this to see if I did set some time aside for myself. I think that putting it somewhere I can see it, like on the fridge, will remind me to do it.”
  • “I think that this booklet is amazing information for parents to know.”

The guide has been written by Dr Samantha Flynn, Dr Vaso Totsika and Professor Richard Hastings of the University of Warwick’s Centre for Educational Development, Appraisal and Research (CEDAR), in collaboration with family carers of children with learning disabilities, Margaret Kelly and Joanne Sweeney of Mencap Northern Ireland, Tracy Elliott from Cerebra and Viv Cooper OBE and Jacqui Shurlock from The Challenging Behaviour Foundation.

The guide is supported by a policy briefing which you can download here:

Policy briefing

Dr Totsika said:

“We wanted to share what CEDAR has found out about the best ways parents can  support the well-being of children with learning disabilities in a format that was easy to understand and also easy for parents to put into practice.

“We are very grateful to the parents who worked with us on the Guide to put our research into context, and share their own experiences of supporting a child with learning disabilities through examples from their own lives.”

Margaret Kelly, Director of Mencap NI said:

“We are delighted to have worked alongside the University of Warwick, parents and various organisations to produce this wonderful guide to help support parents of young children with a learning disability.

“There are currently 5,000 children with a learning disability under the age of seven in Northern Ireland and we believe every young child with a learning disability should have access to early intervention services that support their development from birth.

“At Mencap, we are committed to ensuring children with a learning disability and their families have access to effective early intervention services and approaches and we believe this book will be of support to so many parents of children with a learning disability.”

Tracy Elliott, Head of Research and Information at Cerebra, said:

“Cerebra is the charity that works with families who include children with brain conditions.  By listening to families we know that one of their key concerns is for their child’s well-being, but they often question what well-being means for their child and how can they promote it.

“Using research evidence, this booklet will answer key questions families have and give them ideas of what they can do to enhance their child’s and family’s well-being.”

Jacqui Shurlock, Children and Young people’s lead at the Challenging Behaviour Foundation said:

“The Challenging Behaviour Foundation supports families of children and adults with severe learning disabilities whose behaviours are described as challenging.

“Families tell us that it is really difficult to get good information or support when children are small and that sometimes professionals dismiss their questions or concerns about how to manage day to day life.  Families want the right information at the right time, presented in the right way.  This booklet is a real step in the right direction.  We hope families will find it useful and we very much hope to see other researchers following this example.”

Development of this booklet was supported by an award from the ESRC Impact Acceleration Award of the University of Warwick (ES/M500434/1).

The research that primarily fed into this booklet has been funded by a grant from the Baily Thomas Charitable Fund (TRUST/VC/AC/SG/4016-6851). Some of the previous research that was included in the booklet had been supported by the Economic and Social Research Council.

Mencap, Cerebra, and the Challenging Behaviour Foundation have provided support for a number of the studies included in this booklet, both financial and collaborative.

 

 

How to look after yourself

We know from research that parents of children with a learning disability can be twice as likely to experience high stress levels as do other parents. High levels of stress can have a negative impact on your well-being.

In this article we look at some ways that you can look after your own well-being. Not all of these will work for everyone, and there could be some trial and error involved while you find what works best for you. This article is taken from A Parent’s Guide: Improving the well-being of young children with learning disabilities.

We know that the simplest things, like eating healthily, getting enough rest, and exercising regularly can be the most difficult when caring for a child with a learning disability. But it is important to do these things to look after yourself. Most parents we spoke to said that sleep was the most difficult thing for them to do. Addressing your child’s sleep issues will help you get a better night’s sleep. You might need some help from others when you try to deal with your child’s sleep difficulties. Cerebra have a team of sleep practitioners who can offer help and advice about children’s sleep problems.

You could try to make some small changes that can benefit your own and your child’s well-being. Parents and practitioners advised that some examples of small changes are:

  • Putting on some music that you enjoy and sing or dance to it
  • Thinking about short journeys that you can walk, instead of driving
  • Thinking back to the things that you most enjoyed before you had children (e.g., playing sports, going out with friends, reading), and trying to think of a creative way to fit some of them back into your life.
  • Trying something new that you’ve wanted to do for a while. The parents we spoke to said that this could be a good way to meet new people as well.
  • Find someone who can support you to have short and regular breaks to do something you enjoy (e.g., having a quiet cup of tea, going for a walk.

It might help to talk to other parents who are going through a similar experience to you. You could join a support group for parents of children with disabilities. Some of the parents we spoke to said that they were members of online support groups and parent groups on social media; they said that these were really good to get support from people who are similar to them.

We know from research that using mindfulness and meditation, can help to improve parental well-being. Mindfulness might also help us to make practical changes after practising it for some time as we are less likely to be reactive in stressful situations. There are courses available on mindfulness and these might help to get you started. Some of the parents we spoke to said that parents could use mindfulness or meditation apps on their phones, and this might be easier to do than going on a course.

Parents tell us that trying to take regular breaks from your caring responsibilities to look after your own health and well-being is also very important. You could ask family and friends to help out, or ask your Local Council for guidance about respite support. Parents we spoke to said that help is out there, and taking some time to find it can give you the time in future that you need to look after yourself. All parents said that time was the best resource when they are trying to look after themselves.

Trying to make time for yourself might feel impossible, especially when your child is young or has complex needs. But looking after yourself is not time out from caring for your child. It is an investment that supports you, your child, and your unique relationship.

Some parents that we spoke to said that even really short breaks can help them to look after themselves. This might be more manageable for some families.

We spoke to parents of children with a learning disability about some other ways that they look after their own well-being:

“I try to see a friend one evening a week, and get caught up with them. There are nights where I sit down and I am too tired, and don’t want to go, but it is worth it for that bit of sanity and get out and be with my friends and catch up.” A mother of a two and a half year old boy with Down’s syndrome
“I enjoy playing football, and that’s my own time a few nights a week if I’m not working. I find it hard to find time sometimes, because I work full-time.” A father of a three year old boy with a learning disability
“It’s not easy to fit everything in. We have to roll with it, and take time for ourselves whenever we can. We usually take time when we have dropped our daughter off at nursery to get a bite to eat, or spend some time with the other parents [of children with learning disabilities].” A mother of a three year old girl with a learning disability

 

‘A Parent’s Guide: Improving the well-being of young children with learning disabilities’ is a collaboration between the University of Warwick, Cerebra, Mencap, the Challenging Behaviour Foundation, and parents of children with learning disabilities.

The booklet has been created to help parents support the well-being of their young child with a learning disability (aged 0 to 5), but parents of older children may also find it useful.The guide contains helpful information on:

  • Chapter 1: How to look after yourself (Parental well-being)
  • Chapter 2: Organising family life
  • Chapter 3: Spending time together
  • Chapter 4: Activities to do with my child with a learning disability at home and outside

BorrowBox is coming soon!

We’re delighted to announce that BorrowBox is coming soon to our library. With BorrowBox you’ll be able to borrow e-books and e-audiobooks from Cerebra 24 hours a day, 7 days a week. .

Recognised as the No1 library download platform in the world, BorrowBox is the brainchild of Bolinda Digital. Unique because it will enable members of our library to download and borrow eBooks and e-Audiobooks via digital  loans. BorrowBox is the only app of its kind in the world with an inbuilt eBook reader and eAudiobook player.

On your phone, on your iPad, on your home computer, BorrowBox means that the doors to our library will never close – you can access books around the clock. BorrowBox can be used online and with Apple iOS and Google Android devices. You’ll be able to download ebooks directly from the the Cerebra library or from the BorrowBox app.

We are so pleased to be able to offer a new service as part of our library. With BorrowBox we are able to offer e-books as well as books. These are going to appeal to a different group of people who prefer reading books on their tablet, PC or kindle. Anyone who is a member of Cerebra can join our BorrowBox library, you don’t have to be a member of the postal library. We are pleased to be giving parents more ways of getting information about neurological conditions. As well as e-books for parents, we are also going to have a selection of e-audio books for children. This is really exciting as we haven’t been able to offer books that children can listen to before. Jan Pugh – Cerebra Librarian

Keep an eye open for more information about how you will be able to use this wonderful resource, completely free of charge.

 

 

Improving the well-being of young children with learning disabilities: A Parent’s Guide

We’re looking for people to take a look at a brand new booklet on improving the well-being of young children with learning disabilities, and to give their feedback.

Researchers at the University of Warwick are working with a group of parents of children with learning disabilities, Mencap, the Challenging Behaviour Foundation, and Cerebra to write a guide for parents to support the well-being of young children with learning disabilities.

The booklet combines what we know from research with parents’ personal experiences. The family activities within the booklet have been shown to be important for supporting the well-being of children with learning disabilities.

There are four chapters in the booklet, and parents are able to use the booklet flexibly depending on what information they want to know at the time. The chapters are about:

  • How to look after yourself
  • Organising family life
  • Spending time together
  • Activities to do with my child with a learning disability at home and outside

You can download a copy of the booklet for free here.

Please tell us what you think about it here.

Thank you for your help.

Accredited workshops on Accessing Public Services, DLA and Sleep

Guide to claiming disability living allowanceWe are delighted to announce that our workshops on Accessing Public Services, DLA and Sleep have been accredited by the CPD Certification Service.

This means that our information workshops have reached the required Continuing Professional Development standards and benchmarks and that the learning value of each has been examined to ensure integrity and quality.

Our research has shown that families can experience difficulties accessing public services, completing the Disability Living Allowance (DLA) forms and with their children getting a good night’s sleep. Our workshops aim to give families the knowledge, skills and confidence they need to tackle these issues.

Accessing Public Services

While UK law provides powerful rights to accessing health, social care and education support services, the law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. This workshop can support you by unpicking potential problems and give you the tools you need to resolve them. The workshop will help you get the best out of our Accessing Public Services Toolkit.

DLA

This workshop will help you to use our DLA Guide to complete the DLA claim form. It also looks at the common problem areas, busts some of the myths around DLA and gets you to assess whether you’re getting the correct rate of DLA for your child (if you already claim it). If you’re not, we’ll talk about how to go about challenging the decision. The workshop also takes a brief look at related benefits.

Sleep

We will help you to understand and support your child’s sleep. The workshop looks at why sleep is so important, what can affect it and strategies to improve problems such as settling, night waking, early rising and sleeping alone. The workshop supports the advice given in our Sleep Guide and by the end of the workshop you should feel more confident to tackle your child’s sleep problem.

If you would like to host one of these workshops please call us on our Freephone number 0800 3281159.

Sensory toys for young children in our library

We have recently added a selection of toys suitable for the under 3s to our postal lending library.

Nursery Toy Kits

We now have three sets of nursery kits suitable for children aged 3-12 months, 12-24 months or 24-36 months. Each kit contains a range of colourful, stimulating toys for the under 3s for exploration, play and early education.

3 – 12 months

12 – 24 months

24 – 36 months

They may include battery operated items.

Bamba First Comforts – the first word in baby signing at home

We also have a new item in the Sensory Toy Library, a ‘Bamba First Comforts’ baby signing kit, kindly donated to us from a shop in Carmarthen, ‘Croeso Cynnes’.

The kit comes with a book, a dvd and a box of toys to teach the concepts of communication through play.

If you are interested in borrowing any of these items or have any queries about our library please email the Librarian at janetp@cerebra.org.uk

Full details about our library service can be found on the library page of our website https://www.cerebra.org.uk/help-and-information/library/

Meet our Scottish Facilitators

One challenge that parents have told us that they struggle with is dealing with statutory agencies in relation to the provision of health, social care and education support services. We listened to this concern and have funded research to explore practical and effective ways of resolving the commonly occurring problems families face when dealing with public bodies. As a result we produced our Accessing Public Services toolkit and started running workshops alongside our toolkit.

Following on from the success of both the toolkit and accompanying workshop, the toolkit has been adapted so that it is relevant for families who have a child with a brain condition who live in Scotland. The toolkit is free to download from our website.

To help us run our Scottish toolkit workshops we are delighted to have taken on 5 parent/carers, all of whom have children with a brain condition and who have also experienced the difficulties that many families face in accessing public services.

We value their experience, skills and knowledge of disabled children and the Scottish social care system. This is our opportunity to introduce them to you.

If you are an organisation in Scotland and would like to hold one of our workshops, please get in touch with Beverley Hitchcock on beverleyh@cerebra.org.uk

Gail

My name is Gail McKeitch. Whilst born and bred in Glasgow, I now live in Aberdeenshire and have done for 30yrs. I’m married with three adult sons, two of whom have an autistic spectrum disorder. I have previously worked within HMRC, National Autistic Society, VSA Carers Centre and more recently with a private social care company. As a volunteer I facilitate an autism specific support group known as NAS Ellon Branch as well having my own autism consultancy. Yes, I like to keep busy and thrive on a challenge. Looking forward to meeting you.

Laura

I am mum to Tom who is 5, and has a range of complex medical issues including cardiac, respiratory and epilepsy.  Tom would fall into the category of a child with exceptional health care needs, so needs round the clock highly specialised medical care.  We have had some very positive experiences with accessing support, but also some extremely challenging ones.  I am currently part of the Exceptional Families project working with Kindred and the CEN clinical network to improve the services and support available for families like ours. In order to be a strong advocate for Tom, I have had to arm myself with as much information as I could, be very clear about articulating his needs, and not be afraid to have difficult and sometimes emotional conversations with professionals. I’m hoping to help other parents to do the same.

Sam

Hi, I’m Sam and I live near Auchterarder with my husband, 12 year old son, 9 year old daughter and 2 cats! I spend my time caring for my son who was initially diagnosed with Cerebral Palsy at 2, re-diagnosed with Hereditary Spastic Paraplegia at 6, being a Mum, working as a volunteer adviser with Citizien’s Advice and trying (badly) to get fit. Before kids, I spent many years working as an IT Consultant including doing lots of facilitation. I’m really looking forward to helping to run the new workshops in Scotland.

Sharron

I’m Sharron Farrell and I’m the mother of 6 children (think Old Woman who lived in a Shoe!). My eldest son has severe autism and attends a Communication Base in a Mainstream School. I have personal, voluntary, and professional experience regarding the challenges families face in order to access the services they need. I have a background in Biochemistry, Teaching, IT, and Autism.
 

Judith

Hi, my name is Judith Knox and I live in Fife with my husband and 10 year old son. My son has complex needs and I am his main advocate in ensuring he receives the support he requires to fully meet his needs. Having been employed within both the NHS and local authority Social Work Service for many years I was fortunate to have an understanding of the local landscape and systems.  This has been a great help in navigating my way through the bureaucracy. To have had access to a resource like the Cerebra Accessing Public Services Toolkit at that time would have been so helpful. My journey to access services and appropriate support for my son continues.  I am currently on a year’s career break to allow me to concentrate on accessing appropriate educational placement for my son. I am thrilled to be part of the team bringing this Toolkit to life across Scotland.

 

 

Get sleep help

If you have a child 16 or under with a brain related condition fill in our referral form below and we could give you the help you need to get a good night’s sleep.

About you

About the child you care for or support

(We can only accept a referral for children who are diagnosed with a brain related condition, or are going through the assessment process)

Cerebra is committed to protecting and respecting your privacy. We will use the information you have provided to process your request and, where appropriate, to help you deal with the issues recorded on the form.

We will store your details electronically and keep it secure. We will not sell or share it with third parties. We will keep your personal data for no longer than is necessary for the purposes described above.

Please tick the box below to give us permission to use your personal information in this way. You can withdraw your permission at any time by contacting contactcare@cerebra.org.uk. For more information about your rights under data protection legislation, including your right to make a complaint to the Information Commissioner’s Office, please visit ico.org.uk/for-the-public

If you have any queries about how we handle your personal information, please contact us at enquiries@cerebra.org.uk

Cerebra Innovation Centre’s Rocket Shelf Finds a New Home

Eve and her rocket shelf

Eve and her rocket shelf

The Cerebra Innovation Centre recently designed these rocket shelves. This cool piece of equipment was originally designed for a young boy, to help his mum who has to transport numerous medical machines whilst transferring him from room to room.

They were styled to suit a child’s bedroom and be more like a child’s toy rather than looking dull and medical. They feature 3 shelves, space to store an oxygen bottle, a 4 socket extension lead so all the machines are plugged in and you only need one wall socket, and 4 omnidirectional wheels so it can be moved around effortlessly. Additionally, there is ample space to wind wires and store bits and bobs.

Since the team at the Innovation Centre first started making the shelves, there have been many happy children and parents that have benefited from the design, including Eve. She and Dad Steven are currently testing out the rocket shelves and sent us these gorgeous pictures.

The rocket shelf

The rocket shelf

Steven said: “It’s amazing THANK you so much I will send more pictures as we go on amazing.”

Heidi and Tim also had a rocket shelf for their little one Charlotte, and we were so pleased when Heidi sent us in this lovely feedback.

Heidi says “The shelving unit is working out great for us and easily stores all her machinery and medical items, fitting well into the bedroom space.

The fact it is on wheels is great as we have to change her ventilators weekly which means needing easy access to the back of the machines which the wheels and open backing provides for”

Thank you to everyone for the wonderful feedback on our rocket shelves.

 

If our Innovation Centre can help you and your family just get in touch on cic@cerebra.org.uk.