Category Archives: Practical Help

Our LEaP Project helps change the Welsh Government’s guidance on continence products

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.

What can I do if my child needs me to be there in order for them to sleep?

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.

Get a good night’s sleep with help from our library

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

Fibre optics

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.

Mood egg

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
tactile items.

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 janetp@cerebra.org.uk or 01267 244203.

Sleep – tips and techniques

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

Download booklet (PDF)

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.

The Sleep Tips guide can be downloaded free of charge. You can also access one-to-one support, find out about sleep workshops as well as download our comprehensive Sleep Guide.

We’ve planned a week of activity on social media around the launch of the new Sleep Tips booklet. Cerebra Sleep Week runs from 17th – 23rd September and will include lots of advice and support for families who may be struggling with lack of sleep. #Cerebrasleepweek.

What impact do sleep problems have?

Although the odd night of poor sleep may not affect daily abilities, persistent sleep problems can have a huge impact on individuals with and without intellectual disability and their friends, families, colleagues and carers. For all individuals, lack of sleep is associated with problems with mood, learning, memory and behaviour.

This article is taken from our Sleep Guide which you can download for free on our website.

Learning

Importantly, poor sleep affects motivation and concentration, which means that individuals who are experiencing sleep problems may make more errors at school/work, particularly on repetitive tasks. This means that if your child is struggling on ‘easier’ tasks at school (which are often repeated until they are ready to move on to harder tasks) it is worth speaking to their teacher, who may be under the impression that they are struggling because of their intellectual disability, rather than the sleep issues.

Sleep is also vital to a process called memory consolidation, where memories from the day (e.g. memory of that is learned at school) are strengthened. If sleep is disrupted these memories may not be stored properly, making it harder for children to use what they have already learned during the next day at school.

Challenging behaviour

Poor sleep may also reduce an individual’s ability to cope with changes in their routine. You may notice that your child shows more challenging behaviour (for example, self-injury, aggression, destruction) when they have not slept well the night before. This is common in children with intellectual disability and also in children and adults of typical development! We are all more irritable when we have not slept well and are therefore more likely to show behaviours which indicate that we would like certain tasks to end or situations to change.

Since individuals with intellectual disability may have limited ways to communicate their feelings and preferences, challenging behaviour can be a very effective way of indicating needs or desires (for example for a task to be taken away). It is natural for parents/carers/teachers to want to respond quickly to the challenging behaviour, which means that it is more likely to occur again the next time they want a task to be removed. For more information on mutual reinforcement of challenging behaviour, see “Parent response to waking” on page 10 of our Sleep Guide, and also our factsheet on Managing Challenging Behaviour.

Parents of children with intellectual disability therefore have a lot to do: comforting children with sleeping problems, acting as an advocate for their child’s learning and health, and managing challenging behaviour. Often parents and family members experience a loss of sleep themselves, which can make managing these aspects of parenting more difficult and may even contribute to low mood and impaired concentration.

It may feel as though your child’s sleep problem is out of your control or that you do not have he time/resources to invest in fixing it. However, after thorough assessment, there are some simple intervention strategies available in Part Three of the guide which can help to improve sleep.

You can download our Sleep Guide and our new tips and techniques booklet free of charge from our website. If you’d like some individual advice on tackling your child’s sleep issues please get in touch with our Sleep Team.

My child just won’t go to sleep

Small girl waking her parents early in the morning.This article takes a look at what you can do if your child just won’t go to sleep. It’s taken from our Sleep Guide which is available to download for free.

What should I do when my child just will not go to sleep?

Often settling problems can be caused by a lack of bedtime routine or perhaps the bedroom being associated with activities other than sleep. However, even after establishing a calming bedtime routine, it may be that your child does not want to go to sleep and cries out to you. This may be distressing for you as a parent to hear and your natural reaction may be to go back into your child’s bedroom.

As described in Part One of the Sleep Guide, this may be contributing to the problem, and so the next step for intervention would be to stop reinforcing the settling problem. This may require ‘ignoring’ your child’s cries, which is known as extinction. However, this can be very difficult for parents and children, so graduated extinction is recommended.

Agree a set amount of time (e.g. 2 minutes) that you will allow your child to cry for, before briefly checking on them.

  1. When your child has been crying for the 2 minutes, go in and check them. This checking should only be to reassure yourself that the child is alright and to tell them to go back to bed. When you check on them, do not offer physical interaction, music, or any other aspect of the bedtime routine.
  2. Leave the room and wait the agreed time before repeating the checking procedure.
  3. You may have to repeat this many times before your child eventually falls asleep, so it’s a good idea to start on Friday night or another evening where no one has school or work the next day.
  4. The next night, gradually increase the amount of time you allow before checking on your child (e.g. from 2 minutes to 4 minutes), and continue to keep the checking procedure brief.
  5. Repeat this until the child’s crying at settling reduces.

If the suggested times here are too long, try just waiting for one minute before checking and then gradually increase the time by 30 seconds each night. Eventually your child will learn to settle themselves to sleep without you there

If you’d like some individual advice on introducing this technique please get in touch with our Sleep Team. 

Jonas enjoys sensory toys from our library

Jonas with fibre optics

Jonas with fibre optics

Jonas’ parents recently contacted our postal lending library to borrow some sensory lights. Mum Jolanta and dad Andrej told us their story.

”Jonas is a 2 year old boy who has CDKL5 disorder. CDKL5 is a rare x- linked genetic disorder that results in early onset, difficult to control seizures, low muscle tone and severe neurodevelopmental impairment.

Most children with CDKL5 do not walk, almost all do not talk and they have a range of other symptoms. Sadly Jonas has a cortical visual impairment (CVI) and can’t hold his head up yet. Unfortunately there is no treatment  for his condition.

As a parents we are looking for all available options how we can help our son to enjoy life as much as possible. At the same time we want to improve his vision and that is a reason that we decided to try to borrow the fibre optics from Cerebra library.

And it was amazing! Jonas enjoyed fibre optics so much and it helped his therapy to stimulate his vision”.

You can find out more information about our postal lending library on our website or by emailing janetp@cerebra.org.uk.

 

Travel insurance covering children with disabilities

travel insurance covering children with disabilities

At this time of year, one of the questions coming in to our helpline is about travel insurance that will cover children with pre-existing conditions. Many people have travel cover potentially included with a service they already use, such as car insurance, a membership subscription or a bank account, but they have looked in the small print and found that pre-existing conditions are excluded.

Should you be in this position and wish to know where to find an insurer that will provide cover, the list below is a place to start. Some of these companies only cover for certain conditions.

Listing these companies does not imply that Cerebra recommend any of them, only that we know they are there. Please make sure you check that they are suitable for your needs.

Insurance companies

A holiday advice organisation that may know of other insurers is Tourism for All.

Other things worth thinking about before travelling

Government advice about travel with disabilities, which includes insurance, booking, taking medication abroad, law, access, finance, airports and so on.

For travel in the UK, the National Key Scheme for access to toilets for people with disabilities (not all toilets are kept locked, but for those that are), http://nks.directenquiries.com/nks/page.aspx?pageid=10&tab=National+Key+Scheme&level=2 and

For travel in Europe, a European Health Insurance Card (EHIC) is needed. These cards should be free of charge but they go out of date, so if you already have one it is worth checking that it will still be valid when you travel.  Further details: http://www.moneysavingexpert.com/travel/free-ehic-card.


This article was first written in June 2015. Updated August 2018.