Six year-old Jake-Junior to run for Cerebra

Jake-Junior

Jake-Junior

When Jake -Junior cheered his dad from the side-lines as he completed the London Marathon, there was only one thing he wanted to know – how he could get his hands on a medal too?

Six year-old Jake -Junior has ADHD and sensory processing difficulties, which leave him with a lot of anxiety. Due to his condition, Jake-Junior has lots of energy and is always on the go but he can sometimes have problems with impulse control and can get frustrated very quickly, especially at school.

Despite the challenges he faces every day, Jake -Junior wanted to follow in the footsteps of dad Jake and take on his very own running challenge to help children who have conditions like his.

Jake-Junior showing his run time

Jake-Junior showing his run time

His Mum Nicola explains why Jake – Junior decided to fundraise for us: “Cerebra helped us with his sleeping issues, making sure we all get a good night’s sleep, and gave advice on his sensory problems. They also have a fantastic library to lend out toys and books”.

His energy has meant that he has been doing extremely well with his training. Mum Nicola said: ‘Jake-Junior doesn’t have a “stop button” – if he’s awake, it’s time to run! He’s already starting to train for his 5k run with sit-ups, push ups and short runs.

“Me and his Daddy are immensely proud. He’s such a lovely boy and a bit of a charmer. All his teachers love him! He has been training every day so far and even wanted to do the race on his own though we thought it was best if dad went along!”

Jake-Junior will be running Birmingham’s 5k Big Fun Run on 8th September and you can help him reach his fundraising target through his Just Giving page.

BorrowBox is here!

We are so pleased to offer a new service in our library.  You can now borrow ebooks and audiobooks from us with BorrowBox. You can read or listen to books using the BorrowBox app on your smartphone or tablet or from your computer on their website.

Here are a couple of the books you can borrow.

The Out-of-Sync Child by Carol Kranowitz

The Out-of-Sync Child is very popular book in our library and now you can borrow it as an audiobook.

From the Trade Paperback edition:

“Does your child exhibit over-responsivity–or under-responsivity–to touch or movement? A child with SPD may be a “sensory avoider,” withdrawing from touch, refusing to wear certain clothing, avoiding active games–or he may be a “sensory disregarder,” needing a jump start to get moving.

Over-responsivity–or under-responsivity–to sounds, sights taste, or smell? She may cover her ears or eyes, be a picky eater, or seem oblivious to sensory cues. Cravings for sensation? The “sensory craver” never gets enough of certain sensations, e.g., messy play, spicy food, noisy action, and perpetual movement. Poor sensory discrimination? She may not sense the difference between objects or experiences–unaware of what she’s holding unless she looks, and unable to sense when she’s falling or how to catch herself.

Unusually high or low activity level? The child may be constantly on the go–wearing out everyone around him–or move slowly and tire easily, showing little interest in the world. Problems with posture or motor coordination? He may slouch, move awkwardly, seem careless or accident-prone.

These are often the first clues to Sensory Processing Disorder–a common but frequently misdiagnosed problem in which the central nervous system misinterprets messages from the senses. The Out-of-Sync Child offers comprehensive, clear information for parents and professionals–and a drug-free treatment approach for children.”

Mindful Parenting for ADHD: A Guide to Cultivating Calm, Reducing Stress, and Helping Children Thrive by Mark Bertin

From the Trade Paperback edition:

“Written by a pediatrician and based in proven-effective mindfulness techniques, this book will help you and your child with attention deficit/hyperactivity disorder (ADHD) keep calm, flexible, and in control.

If you are a parent of a child with attention deficit/hyperactivity disorder (ADHD), you probably face many unique daily challenges. Kids with ADHD are often inattentive, hyperactive, and impulsive, since ADHD affects all of self-management and self-regulation. As a result, you might become chronically frustrated or stressed out, which makes caring for ADHD that much harder. In this book, a developmental pediatrician presents a proven-effective program for helping both you and your child with ADHD stay cool and collected while remaining flexible, resilient, and mindful.

Bertin addresses the various symptoms of ADHD using non-technical language and a user-friendly format. In addition, he offers guidelines to help you assess your child’s strengths and weaknesses, create plans for building skills and managing specific challenges, lower stress levels for both yourself and your child, communicate effectively, and cultivate balance and harmony at home and at school.

If you are a parent, caregiver, or mental health professional, this book provides a valuable guide.”


Full details of how BorrowBox works and how to sign up are on our BorrowBox page. You can also view the full library of ebooks and audiobooks here.

Arctic Ride Alaska!

Gordon with his brother Robbie

This summer Cerebra Ambassador Gordon Stuart will attempt his latest epic charity motorbike challenge. He will have just 12 days to take on the 5000 mile ride through Canada, Alaska, and the Arctic. 800 miles of this will be off-road when takes on the notoriously dangerous Dalton Highway, made famous in the documentary TV series ‘Ice Road Truckers’.

Gordon’s project, ‘The Arctic Rider’, is an on-going series of charity motorbike challenges. Gordon explains: “It started in 2011 as a charity ride to the Arctic Circle that didn’t really go to plan, and has become a near obsession with the Arctic, an obsession with riding a motorbike, and an obsession with helping charities close to my heart”.

In 2011 he crashed his motorbike in Sweden en route to the Arctic, raising £1,300 for Cerebra. In 2014, he rode 6,000 miles solo to Nordkapp in the Arctic Circle, raising over £5,000 for Cerebra. And in 2016, he completed the UK ‘Iron Butt challenge’, riding the length of the UK from Lands End to John O’Groats in 18 hours, raising over £1,800 for Tiny Lives Trust.

Causes close to his heart

This year’s challenge is the biggest yet! Gordon is attempting to raise £4000 for Cerebra and Newcastle based charity The Tiny Lives Trust. Gordon explains why these charities are very close to his heart:

“My little brother Robbie suffered severe brain damage from a near miss cot death when he was just 9 months old. Cerebra have supported my family ever since and I am proud to be a fundraiser and Ambassador for a charity that changes so many lives for the better. Both of my own children were born prematurely and spent time in SCBU. The Tiny Lives Trust helps to care for premature and sick newborn babies, their mothers, and families in SCBU by providing a range of facilities, staff, and equipment.”

Speaking ahead of his challenge Gordon said: “Only a few weeks ago I wasn’t even sure I was going to be able to do the trip this summer. My youngest, Hugo, has been in and out of hospital this year and was in only few weeks ago, which threw my trip into doubt. While I’m committed to the great charities I support, family always comes first. After some long conversations with my (long suffering biker-widow) wife Kirsty, we agreed that the right thing to do was to press ahead with my trip and raise even more money to help other children like Hugo and his big sister Islay. I must say The Arctic Rider project would be nothing without the support from Kirsty. This time she’ll be holding at fort at home for 3 weeks with a pre-schooler and a baby, while I’m fighting bears and mosquitoes in northern North America. Those who’ve been following since my early trips will remember I left a 6-month pregnant Kirsty while I sent off for Nordkapp in 2014 – what a lass!”

The Trip

Gordon will be riding 5,000 miles in 2 weeks to cross Canada and Alaska including the notorious Ice-road ‘The Dalton Highway’, deep inside the Arctic Circle – described as 800 miles of gravel, mud, mosquitoes, mountain ranges, and angry truckers!

To complete the ride he will to travel to Calgary, Canada to meet his specially modified off-road Adventure motorcycle (provided by Suzuki). He will then travel across Canada and Alaska to take on the ride and the Dalton highway. ‘The Dalton’ is a 414 mile stretch of mostly gravel road which was designed as a supply road to support the Trans-Alaskan Pipeline. The road is often cited as one of the world most dangerous roads due its remoteness, road quality, and demanding Arctic weather.

The trip will be a tough one. Phil Freeman, a veteran of 10+ rides up the Dalton and Alaskan native describes the ride: “Every year motorcyclists are killed on the Dalton Highway. There are relatively no places to stop along the way: no gas, no convenience stores, no McDonalds. There are stretches of up to 245 miles without gas. On a good day, you can ride it wide open. On a bad day, you can go home in a helicopter. You are literally riding through pristine wilderness. Welcome to the food chain.”

Gordon will be setting off from Newcastle on 26th June and you can follow his preparations and progress on his blog.

If you’d like to support Gordon please visit his Virgin Money Giving page.

Tiny hats for tiny babies

One of our dedicated fundraisers, Sam Elliott, has just knitted 39 baby hats for premature babies on the Neonatal Ward at Leeds General Infirmary.

Sam Elliott has worked in our fundraising department for just under a year. Having recently learned how to knit, she saw a post on Facebook asking for hats for premature babies. As we sponsor research at the University of Leeds into the prevention of premature birth, Sam decided to knit her hats for the hospital we work with.

Tracy Elliott, Head of Research & Information, and Imogen Morgan, Trustee, present the hats to the Neonatal ward

She created 39 hats in all different colours and sizes. It took her a couple of months with each hat taking about 2 hours to complete. Sam said:

“I love raising funds for Cerebra and through this project I was able to help our work in another way”.

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.

Preventing neonatal brain injury and childhood disability

The main objective of the Cerebra Perinatal Research Centre at the University of Leeds is to make a difference in the lives of expectant mothers and their children. In this article we take a look at why this research is important, the progress being made and the longer term impact of our research.

Cerebra Perinatal Research Centre: preventing neonatal brain injury and childhood disability

While most women can enjoy a healthy and uncomplicated pregnancy, there are three major adverse outcomes that may unexpectedly occur:

  • preterm birth (babies born more than 3 weeks early),
  • growth restriction (baby has a lower birth weight than expected), and
  • pre-eclampsia (high blood pressure in pregnancy).

Worldwide, and in the UK, these adverse outcomes affect one in five pregnancies. Alone, or in combination, they may have serious consequences for the mother and/or her baby.

Importantly, they are the leading causes of neonatal brain injury and later childhood disability (both cognitive and motor, ranging from poor academic achievement through to the spectrum of cerebral palsy). For many of these babies there is a need for additional neonatal support and care, especially for those born preterm.

Ideally, we would be able to predict which mothers are at risk and put in place preventative strategies. However, identifying at-risk mothers is difficult as the reasons for these adverse outcomes are complex and poorly understood.

Why our research is important

We are a research group focused on understanding the causes of these pregnancy complications. Since 2007 we have been engaged in identifying the pre-symptomatic detection of these conditions and promoting preventative strategies. Thus reducing the incidence and burden of childhood brain injury.

Our research has informed clinical practice, inspired multi-professional teaching, and led to a reduction in one of the key adverse outcomes, preterm birth. Over the period of Cerebra’s funding of the Centre, this work has led to a fall in preterm birth rates, with almost 350 fewer babies each year being born too soon.

The development of the SCOPE cohort supported by our first Cerebra programme grant confirmed the usefulness of a biomarker called placental growth factor. In combination with other clinical risk factors this enhanced prediction, improved outcomes, and reduced the need for unnecessary preventive treatment. The use of this biomarker has since been recommended for use in clinical practice (nice.org.uk/guidance/dg23).

Our research has always concentrated on ensuring effective clinical practice. Without successful implementation of research findings there will be no reduction in the numbers of babies born at risk of brain injury and later disability.

The research need is greater for those women whose risk status only becomes evident after an adverse outcome and for some conditions where no suitable preventive treatment currently exists. It is for these women and their babies that we need to develop new and innovative strategies that can lead to effective preventive interventions.

Some key indicators of progress are:

  • We have recruited more than 3,000 mothers for our prospective biobank TWS (Thousand Women Study)
  • We have published 26 research papers in peer-reviewed international journals and regularly present at national and international conferences
  • We have established partnerships and key collaborations with national and international groups, universities and organisations such as: Kings College London, the University of Manchester, the Royal College of Obstetricians & Gynaecologists, Baby Lifeline, Action on Pre-Eclampsia, Harvard University, SCOPE (the international pregnancy biobank consortium), and InterPregGen (genetics of pre-eclampsia) to name a few
  • We contributed to the NICE Diagnostics Committee’s report on the use of PlGF (placental growth factor) in the diagnosis and management of pre-eclampsia (nice.org.uk/guidance/dg23), and the upcoming recommendations on near patient diagnosis of preterm labour (nice.org.uk/guidance/indevelopment/gid-dg10017)
  • Our Family Integrated Care neonatal program received national recognition for their work, featuring on the BBC’s Victoria Derbyshire program
  • Our Research Midwifery team were an integral part of the highest-recruiting Reproductive Health & Childbirth specialty group in the NIHR-Clinical Research Network for 2016/17

Longer term impact of our research

The main objective of the Cerebra Perinatal Research Centre is to make a difference in the lives of expectant mothers and their children. Our research focuses on understanding pregnancy complications and developing diagnostic/preventive tools. One of our key objectives throughout the programme was the assembly of a comprehensive demographic, clinical and tissue biobank, the Thousand Women Study. This information will be used to characterise healthy pregnancy and help devise predictive and preventative strategies for adverse outcomes. With Cerebra’s funding we have recruited over three thousand women in mid-pregnancy that will enable us to carry out both discovery and validation studies into potential biomarkers and establish new predictive tests, but also evaluate the reliability of those proposed elsewhere.

We are also using innovative imaging technology that allows large areas of the placenta to be surveyed and visualised in 3D. By using this digital platform we will be able to perform a comprehensive analysis of healthy and diseased placentas and compare for structural or morphological differences. We hope to further our understanding of placental function in pregnancy complications and identify markers of susceptibility to disease, that could be used a prognostic tools.

We are also currently leading a clinical trial, the Minidex study, which will provide much needed data on the safety and efficacy of very low doses of steroids in preterm/low birth weight infants who are at particular risk of developing lung and brain injury.

Our research is important for families, and can make a huge difference to the lives of expectant mothers and in their children by reducing/eliminating the incidence and impact of brain injury.

You can find out more about our research programme and watch a short video here.

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.

 

 

Team Imogen smash the Swansea triathlon

Swansea tri group

The whole team

The 2018 UWTSD Swansea Triathlon has come and gone for another year, but for Team Imogen this has been an incredible start to our adventures in 2018!

Six-year-old Imogen Ashwell-Lewis, who has cerebral palsy, captained the charity team with a difference. She was supported around the course by a team consisting of the three designers from our Innovation Centre which is based in Swansea.

The day got off to an incredible start with our resident swimmer, Dan Cuthbertson taking the lead on the swim. This led on to the bike ride where Gerallt Devonald towed Imogen in style. Lastly Dr Ross Head smashed the last leg of the course and ran with Imogen to the finish. The race ended with the whole team joining Ross and Imogen to cross the finish line – full of smiles!

Imogeen in the boat

Imogeen in the boat

Dr Ross Head said, “ I am so happy to be able to say that we completed the Swansea Triathlon as team Imogen! I could not be more proud of the team and our Captain Imogen. She was an absolute star. She was so happy and waved and said hello to everyone all the way round! It is great to have been able to showcase the work we do in front of so many people. The organisers, the spectators and the other athletes were so supportive. I would really like to thank them all; they made a special day. Look out for us in future events- we are hooked and will be back.”

We would like to thank the filming crew from RS Components who followed our story, the incredible friends and family who supported us throughout the course, the organisers who put on such an incredible event and of course, Cerebra’s little super star Imogen who was amazing all day.

This is the start of our Triathlon Journey 2018 – Up next, the Superhero Series 2018!

You can show your support for team Imogen and their efforts through their Just Giving page. If you would like to find out more about the Superhero Series, get in touch with the team at cic@cerebra.org.uk. We’re also looking for families to join us as part of the Superhero Series so please get in touch!

Creating the Urdd Eisteddfod Crown

Daniel Cuthbertson, who is a designer at the Cerebra Innovation Centre, has created the crown for this year’s Brecon and Radnorshire Urdd Eisteddfod

Pupils from Builth Wells High School designed the crown and took their inspiration from their local area – its history and its legends.  Once the pupils had agreed the final design, it was then sent to Dan who had eight weeks to create the finished crown.

The request to create the crown came via Dan’s sister, Sarah Cuthbertson who teaches Technology at the school. Dan was delighted to have the opportunity to create the piece and was pleased to be working with the talented pupils.

Using a host of natural materials – brass, copper, silver and oak – Dan brought the design to life and created the stunning crown that will be awarded to the winner of one of the Eisteddfod’s main literary competitions during the week-long youth festival.

“It’s been an honour for me to create the Urdd Eisteddfod crown this year,” says Dan who lives in Swansea.”It was also a privilege to realise the design and concept of the pupils from Builth Wells High School. Their design challenged me to work with new materials and also motivated me to use new techniques. It’s great to see the crown now completed and I look forward to seeing it being awarded the winner of the competition during the ceremony at the Eisteddfod.”

Dan has worked for the Cerebra Innovation Centre within the University of Wales Trinity Saint David for over six years now. As UWTSD Product Design graduate, Dan loves to use his skills to create equipment for children with brain conditions.

“I am very grateful to Cerebra for giving me the opportunity to be released from my daily work to create this year’s Urdd Eisteddfod crown. I would also like to thank the University for its support and for having the opportunity to use the great equipment we have at the workshops within the University’s Alex building in Swansea. “It has been a huge pleasure to work with a group of enthusiastic pupils and to have had the opportunity to bring their beautiful design to life,” he adds.

The Brecon and Radnorshire Urdd Eisteddfod will be held on the Royal Welsh Showground in Builth Wells, 28 May – 2 June. The crowning ceremony takes place on Friday, 1 June.

 

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