Christmas is a time for joy and for making dreams come true. At our Innovation Centre we believe that all children can achieve their dreams, however big or small. This Christmas we are celebrating twelve fabulous ways our Innovation Centre have made dreams come true this year:
Have you been told that your child can’t have the type of continence product that she needs? Are you concerned about the quality of the products you use? Read on to find out what you can do to make sure your child gets suitable products.
Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. We helped Louise get continence products for her daughter, Rhiannon and asked the Welsh Government to make sure that its guidance did not set a daily ‘maximum’ on the number of products available to families.
We also know from our work with families that the type and/or quality of products can cause problems too. We recently heard from a parent who wanted ‘pull-ups’ for her daughter instead of nappies. She was told that her local health authority didn’t supply them and she contacted the LEaP Project for help.
We wrote a template letter to help the parent make a complaint to her local health authority. Our letter quotes from the relevant guidance, which makes it clear that children should be assessed and provided with products which meet their individual needs. We wanted to share this template letter with other families who might find themselves in a similar situation.
We’ve got a great new children’s book in our library that explores the consequences of being different. ‘That dog has got a beard!’ is all about Buster who feels sad and worried because every time he goes out for a walk people stop and stare at him. He doesn’t know why this is happening but with a little help from his family, he begins to realise that being different isn’t such a bad thing after all.
Author Natalie Ann Beattie told us a little bit about herself and the reasons why she wrote the story:
“First and foremost, I am a mother of two young children, Ethan and Isobelle. Ethan is 13 years old and Isobelle is 6. My son Ethan has Autism and ADHD, which are both very challenging and complex conditions. Before becoming a full-time mum and carer for Ethan, I was a Primary teacher for almost 10 years. I taught children from the age of 3 up to 11.
When my son was a little over 18 months things began to change, he stopped speaking and eating, and his behaviour became challenging and repetitive. I left my teaching to focus on his care, and at the tender age of 4 he was diagnosed with ASD and, two years later, ADHD. I have spent the last 10 years plus gathering all the appropriate help and support required to manage his condition and thus enable him to develop socially, as well as mentally and physically. As you can imagine, it has been an incredibly difficult and challenging journey for all of us. However, the time has come to use all those years of experience in a positive and fulfilling way.
“That dog has got a beard!” is essentially a story about a dog who, because of the way he looks attracts a lot of unwanted attention from other people. When the owners of the other dogs start talking about Buster’s beard and laugh at him, he becomes sad and worried and struggles to work out why he is different to everyone else. Fortunately, with the help and love of his family he learns to embrace his difference and become a happy dog once again.
The story is loosely based on some of the negative responses we have received as a family when we have gone out together with Ethan and something has triggered a ‘meltdown’. The frequent stares, snide remarks and hurtful comments have been devastating and a cruel reminder of the need for people to accept and become more aware of children and adults with autism. We have learned to embrace our son’s condition and to see him as a very special and wonderfully unique young person. I felt that now was the time for the rest of society to appreciate his autism and learn to celebrate, not mock, other people’s differences, whether they be physical, mental or behavioural. In essence, for society to accept him, not the other way around.
The second reason for my story is a simple one. Every time we go out for a walk with our Labradoodle, Buster, people stop and make a comment about his beard. The phrase ‘that dog has got a beard’ was one that I heard so many times that it sparked off the idea for the book. How often do you see a dog with a beard? Especially one that is 7 inches long! Buster is a wonderful dog and has an amazing temperament. He is loved wherever he goes and we are regularly invited to schools, mother and toddler groups, sports clubs and residential homes to do book readings. Buster is a hit with all ages.
Thank you Cerebra for including my book in your library.”
You can borrow ‘That dog has a beard!’ free of charge from our postal lending library.
You can also find out more on Natalie’s website and follow Buster’s adventures on his very own Facebook page .
Are you interested in hosting a workshop to help families access services for their disabled children? We are taking bookings for our popular Accessing Public Services Workshops for 2019.
The Workshops are run by our trained facilitators and will help parents and carers to access health, social care and other services for their children. They include case studies and template letters on direct payments, respite care, Disabled Facilities Grants (Disabled Home Adaptations in Scotland), residential placement and school transport. By the end of the workshop, parent/carers will be able to:
- Identify commonly occurring problems facing families accessing services and recognise different types of dispute
- Come up with problem-solving approaches to these problems
- Use a number of template letters when corresponding with public bodies
The workshops have also been accredited by the CPD Certification Service.
The workshops are free of charge and open to any organisation or parent/carer forum that supports children with a brain condition. They usually run from 10am to 2pm to fit in with the school run. All we ask is that the organiser provides a venue (with a projector), the attendees (a minimum of 10 and maximum of 25) and that there is a 30 minute lunch break. It’s up to the organisers whether they provide refreshments or ask those attending to bring their own.
The workshops have had great reviews and some of the feedback includes:
“The training was very useful and highlighted to me how much I roll over when asked. I now feel empowered to be able to get those things which my son needs”.
“I found the information really helpful also and feel sure it will help me support our families better in tackling some of the issues we discussed”.
“Thank you again for your support through our journey, we do not regret making the complaint, nor where we are now. Too many people here do not get the support they are entitled to but we were the ones that stood up”.
“Knowledge is power! We need as many of these sessions as possible to enable us to take action”.
If you are interested in hosting a workshop then please get in touch with [email protected].
Have you been told that you can’t have more than 4 continence products a day, even if your child needs more? Read on to find out how to get the products you need.
Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. Last year, we told you how we had helped Louise get continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome.
The local continence service had told Louise that it couldn’t supply more than 4 continence products per 24 hours, even though Rhiannon needed more because of her condition.
We noticed that the Welsh Government’s guidance on continence products contradicted itself – one part said that the number of products supplied would depend on a child’s individual needs, but another part said that there was a strict limit of 4 pads per day and that families who needed more would be told to buy their own. We wrote to the Welsh Government’s Cabinet Secretary for Health to highlight the problem and we were told that the guidance would be reviewed.
We’re very pleased to report that the Welsh Government has published a Welsh Health Circular , which has replaced the old guidelines with the new ‘Guidance for the provision of continence containment products to children and young people’.
The Welsh Government accepted our argument that the strict limit of 4 pads per day was “inconsistent with public law principles and a breach of children’s dignity and it does not take into account the need for a full assessment”. The new guidance makes it clear that while four pads per day may be enough for most children and young people, the number of products supplied to families should always meet a child’s individually assessed needs.
If you’ve been told that there’s a limit on the number of products you can have and you live in Wales, tell your local continence team about the above guidance and/or use our template letter to make a complaint. We also have a separate template letter for parents who live in England.
For some children, falling asleep without an adult with them seems impossible. Perhaps your child is used to you sleeping in bed with them, or on a chair in the corner of their room. Although your presence may help them settle to sleep initially, if these same conditions are not in place when they wake up in the middle of the night, they may struggle to settle themselves back to sleep.
In order to help your child learn to fall back to sleep by themselves, you could try gradual withdrawal. If, for example, you usually sleep in the same bed as your child, try sleeping on the floor next to them. After three nights, move slightly further away. After three more nights, you could sleep on a chair next to the bed. Then try moving to the corner, then outside the room.
If your child cries and tries to get you to come into bed with them be firm. Avoid conversation and eye contact if possible. This may be very difficult at first but eventually your child will learn to fall asleep without you there.
This advice is taken from our detailed Sleep Guide. Several techniques are also explained our new Sleep Tips booklet.
If you’d like some individual advice just fill out our Sleep Referral Form and a member of our Sleep Team will be in touch.
Join our librarian Jan (and teddy) as she talks through the different books and sensory equipment we have in our library that could help your child to sleep.
Books on sleep
- L1676 – Treating Sleep Disorders: principle and practice of behaviour sleep medicine by M L Perlis
- L6107 – The New Baby and Toddler Sleep Programme by John Pearce
- L6315 & L6531 – Solving Children’s Sleep Problems: a step by step guide for parents by Lyn Quine
- L6324 – Teach Your Child to Sleep: solving sleep problems from newborn through childhood by Millpond Children’s Sleep Clinic
- L6325 – Sleep Disturbances in Children and Adolescents with Disorders of Development: its significance and management by Gregory Stores
- L6367 – A Clinical Guide to Pediatric Sleep Diagnosis and Management of Sleep Problems by Jodi A Mindell
- L6392 – Sleep Difficulties and the Autism Spectrum Disorder by Kenneth Aitken
- L6605 & L6606 – Sleep Better: a guide to improving sleep for children with special needs by Mark Durrant
- L6694 – The Gentle Sleep Book: a guide for calm babies toddlers and pre-schoolers by Sarah Ockwell- Smith
- L6730 – Sleep? What’s That? The incidence and impact of sleep problems in families of disabled children by Gillian Cowdell
- L6740 – Why We Sleep? The new science of sleep and dreams by Matthew Walker
Relaxing sensory toys
The most widely accessible of all the sensory equipment. Consists of a light box and 100 two metre fibre optic strands. Features LED lights and plastic ‘sparkle’ effect strands with an automatic colour change cycle. Safe to
handle for children of all ages. Ideal for holding the child’s attention and good for those with sensory avoidance.
New in the library, this robust plastic egg is 42cm high and can be used indoors or outdoors. It is operated using a remote control. You can choose individual colours or a colour changing cycle. It comes with a recharging
station, each charge of 6 hours provides 8 hours of light
NB includes a flashing mode not suitable for those with photosensitive epilepsy.
Relaxation Sensory Kit
Contains all you need to create a calming environment. Includes weighted dolphin neck wrap, microwave heatable animal, aromatherapy diffuser with lavender oil, kid’s relaxation CDs, sand timer and other calming
Sensory in a Suitcase
Our most popular item. The suitcase contains a wealth of sensory equipment to relax and stimulate. Can be used for therapy, education and play activities. Contents include: fibre optic lights; UV torch and UV reactive items; Space Projector; aromatherapy diffuser and oils; mood pod projector with coloured lights;
natural sounds CDs and a variety of sound and tactile items. Most, but not all, also have a pin spot lamp and mirror ball.
To borrow any of these books or sensory toys contact Jan on [email protected] or 01267 244203.
We are launching a new resource to help families who have a child with a brain condition to get a good night’s sleep. ‘Sleep – tips and techniques for families who have a child with a brain condition’ explains techniques to help with the ten most common sleep problems including refusing to go to bed; not wanting to sleep alone, waking up during the night, waking up early.
We all need good quality sleep in order to learn new information, pay attention to the world around us, and store memories effectively. Sleep influences our mood, how hungry or full we feel, as well as fundamental biological processes such as cell development. Given the wide-reaching impact of sleep, it is not surprising that poor sleep has a significant negative impact on people.
Unfortunately, short and disrupted sleep is common in children with neurodevelopmental disorders. Children with autism, intellectual disabilities and a variety of rare genetic syndromes are at greatest risk of experiencing the negative consequences of poor sleep. What’s more, these children may already find learning new information, maintaining attention and regulating mood and behaviour very difficult; compromised sleep in these groups is therefore a huge concern.
Our Sleep Service helps families to get a better night’s sleep through one-to-one support, sleep workshops and sleep information resources.
The new booklet, ‘Sleep – tips and techniques’ introduces and explains several different techniques that may help a child’s sleep and gives lots of illustrated hints and tips for putting them into practice. It includes 10 topics:
- Bedtime routine
- Calming time before sleep
- A good sleep environment
- Positive sleep associations
- Using a comforting object
- Gradual withdrawal from the bedroom
- Moving bedtime backwards
- Moving bedtime forwards
- Creating a rewards system
- Reducing daytime naps
The information in the booklet is based on research at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham. Through the Sleep Project they are leading cutting edge research to understand the different types and causes of sleep problems in children with neurodevelopmental disorders, identifying how poor sleep impacts on children and their families and trialling new interventions to reduce sleep problems more effectively.