Category Archives: Information and Advice

Is your child getting unsuitable continence products?

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.

So, if you’ve been told that your child can’t have the products s/he needs, you can use our template letter to make a complaint. We have separate versions for England and Wales.

That dog has got a beard!

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 .

Accessing Public Services Workshops

accessing public services workshops

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 based on our comprehensive problem solving Accessing Public Services Toolkit which you can download for free from our website. We also have a version for Scotland.

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]

Book reviews

two little boys reading

Our librarian Jan reviews two new books you can borrow from our postal lending library.

there are things I know book cover

‘There are Things I Know’ by Karen B Golightly

What happens when a man you’re sure you’ve never met before picks you up from your school trip and says you mum has gone to heaven and you have to go to a new school? Well if your mum has taught you The Survival Game, you are good at maths and love computer games surely things will work out OK. Told by 8 year old Pepper who has his own way of looking at the world. Can he work out how to find his mum and older brother and sister? He may love helping out with the chickens and the teachers at his new school but does he really believe his mum is in heaven? There are things he knows and he knows that his mum is not dead. An intense read that keeps you in suspense right up to the end.


eye can write book coverEye Can Write by Jonathan Bryan

This is a very special book written by a 12 year old boy who is unable to talk or write, he has spelt out letter by letter using a spelling board. You can watch him doing it on his blog.

In the book you really get a sense of Jonathon’s love for life. He tells us about the inner world he inhabited before he was able to communicate and how it felt to finally be able to interact with his family and the world around him. He writes with joy about his sisters and his friend at the special school, Will. Jonathon tells us about the long process of learning to use the spelling board and how frustrating he finds eye-gaze technology.

He has won several awards including a ‘Diana Legacy Ward’ presented to him by Princes William and Harry and tells us about his experience of that night. And he writes about ‘Teach Us Too’, the charity he fronts that aims to promote the teaching of literacy to all children, regardless of their disability. We are sure to hear more from this remarkable young man in the years to come.


To borrow both either these books from our library contact Jan on [email protected] or 01267 244203.

An introduction to us

My name is Emma and I am married to Michael – it is our 23rd wedding anniversary today – and together we take care of Joshua, our 17 year old son.

joshua and emma

Joshua was born on 5 march 2001, after being induced as he was two weeks overdue. It was a very speedy delivery, which I do not remember too much about, but he began fitting as soon as he was delivered and so he was taken away to an incubator immediately. Later that same day, when he continued to fit and required oxygen to breathe, we were both transferred in separate ambulances to the Special Care baby unit across the city. We stayed up all night watching him and jiggling him as we had been shown, when he forgot to breathe.

On our 4th day in SCBU, Joshua had a MRI Scan and we were told that he had ‘devastating brain damage’ due to a stroke, and that he may not see, hear, walk or talk. This was unbelievable news to absorb and it took another week in SCBU to adjust and to get to know how to care for him properly.

When he was 11 days old we brought him home and we tried to do what we had been told, to treat him like a normal baby. We had no other children so that was all that we could do and Joshua thrived. He grew from being a very thin, newborn to a chubby, smiling one year old. We had regular health visitor attention and Joshua received Portage input too. With the help of splints, Joshua walked and he talked, he would say “hiya” to everyone when out shopping. So I was able to fool myself into believing that, he may be a bit slower than his peers, but that he would achieve all of his milestones.

It was only when Joshua started at Nursery school, when he was at aged 3 or 4, that I suddenly saw that my bouncing boy was not the same as his friends, and it came as quite a shock. At 4 years old, epilepsy became a real issue and we had to start on anti-epileptic drugs. Joshua progressed with his peers to mainstream primary school and thanks to his brilliant Nursery head teacher, he had a statement which meant that he had a full time teaching assistant to support him there. He loved the first couple of years in reception classes, when he would sing at himself in a mirror – he did a great rendition of ‘Magic Moments’ and ‘Close to you’.

But as everyone got older, he was spending more and more time alone with his TA in a small room playing with toys while his peers were learning maths and history. So we made the difficult decision to apply for a Special School place for him. When he was 7 years old, Joshua left his ‘friends’ behind and changed to a special school. His first was not a great success as it coincided with his epilepsy getting much worse and the school was simply not equipped to deal with the aftermath of seizures, so he was forever being sent home or sent to A&E in an ambulance.

In 2011, when Joshua was ten years old, we went to a tribunal to move him to another Special school, which had school nurses on site. Joshua is still at that school now, in their 6th form, and it suits him very well. When you find the right placement for your child, it is a very comforting feeling, as though he has gone ‘home’. I like the school so much that I have become a school governor and volunteer there a lot. I have a mission to support other parents and to encourage them to socialise more, so I run a monthly coffee morning for parents when we enjoy cake and chat. I have also just begun to organise termly mental health sessions for parents and carers, as it is still a taboo subject and yet a very real problem among our community of parents.

However the end is well in sight. Joshua will have to leave this school when he is 19 years old, in July 2020 and so we will soon begin the ‘transition’ process. I detest transition as in my experience, it involves changing from a comfortable, familiar environment to one that is unknown and frightening. I begged Joshua’s nursery head teacher to keep him there until he was 16. She refused, on the grounds that he would be too big for the furniture! I have stopped begging now. I realise that time moves on and that Joshua will have to too, but it does not mean that I have to like it. I have made great progress in the last year as I am no longer an ostrich about it and that is largely due to our Adult social worker who has given me more confidence and keeps us on track.

We are currently in the process of looking around alternative respite provisions, as where he currently goes once a month for a weekend’s short break, will no longer be able to keep him once he turns 18 next March. Once that is resolved, we can turn our attention to his day care provision. We are going to lose the epilepsy nurse who has supported us for the last 13 years, as we are transferred into adult healthcare. It is all change, so turning 18 for Joshua is not like the momentous milestone that it is for his peers: it will not be about legally drinking alcohol and going to university for Joshua, it will be about transition to adult services and starting again, just as we were on an even keel with his health and social care.

You can read more from Emma on her blog Ups and Downs Mum. Emma will be writing some articles for us so if there are any topics you’d like her to write about let us know in the comments.

Special Educational Needs reform in Wales

The special educational needs (SEN) reforms in Wales are now a little under a year away from their introduction. The Additional Learning Needs (ALN) and Educational Tribunal Act was passed in January of this year and will begin to be rolled out from the start of the new school year in September 2019.

What are the reforms?

There will be some significant changes. For instance, as the name of the act suggests, the term ‘special educational needs (SEN)’ will be replaced by ‘additional learning needs (ALN)’. This in turn means the SENCOs will be known as ALeNCOs. School/Early Years Action, School/Early Years Action Plus and statements will disappear and every child with recognised ALN will eventually be issued with a new statutory document called an Individual Development Plan (IDP). This is not to be confused with individual education plans (IEP) which will also be phased out. Unlike statements, which stop when a young person leaves school, IDPs will continue up to 25 years of age if the young person goes onto further education.

The Welsh Government has produced an overview of the new system and has compiled answers to some frequently asked questions: together they will give you a good idea of how the Welsh Government expect things to work.

What happens next?

As the transition to the new system will involve major changes for local authorities, schools and further education colleges it will be introduced gradually and the Welsh Government has produced guidance explaining the timescales involved.

The Welsh Government is also drafting a new code of practice which will be issued for consultation before the end of the year. This is likely to be a rather long document and apparently there won’t be an easy-read version. However, it is very important as it sets out in detail how the ALN system will work in practice and the Welsh Government would like feedback from parents and carers as well as professionals so we will let you know when it is issued.

In the meantime, SNAP Cymru are running some ALN reform awareness sessions for parents and carers in Mid and South-West Wales in November and December.

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.

Improving the mental health of children with brain conditions

We are launching a new project to help families of children with brain conditions access timely and appropriate mental health services. It’s aimed at families of children with rare developmental brain disorders, with a genetic cause, that carry a high risk of them developing conditions such as ADHD, autism, or schizophrenia.

We are working with The Institute of Psychological Medicine and Clinical Neurosciences (IPMCN) at Cardiff University on the project. The project will use the expertise developed at Cardiff to inform parents of the risk factors, challenges and behaviours their child may experience and give them the knowledge they need to seek early support. The project also aims to encourage genetic and mental health services to work together for the benefit of children and families.

As genetic testing becomes even more effective, cheaper and informative the numbers of children receiving a genetic diagnoses will increase. Over the last 10 years Cardiff University has built one of the largest and most detailed studies of individuals with these rare brain conditions. They have gained major insights into their development and the early indications that individual children might be autistic, have ADHD, or develop schizophrenia. The earlier we can intervene to support the child and their family the better the long term outcomes are likely to be.

We want to ensure that we have the evidence based information to pass onto parents in a way they can understand and use to make informed choices about what is best for their child and their family and to access timely and appropriate mental health services. At the same time we will work with clinicians so that they understand that these children face greater risks and challenges and should be able to access services at the earliest opportunity.

The understanding of genetic causes for brain disorders has many potential benefits for families, doctors and society. Genomic medicine promises greater opportunities to:

  • develop new treatments based on an individual’s biology and more precise diagnosis.
  • provide better information on anticipating and preventing serious mental and physical health impacts.
  • help parents, doctors, educationalists and wider society to better understand the underlying causes and consequences of developmental brain disorders, confronting some of the stigma and discrimination children and their families continually face.

As part of this project we will:

  • Identify other voluntary organisations with overlapping interests and involve them in the stakeholder advisory panel.
  • Develop strong partnerships with small condition specific support groups developing cooperative approaches to sharing and developing information resources.
  • Use our current skills, capabilities and family contacts to develop high quality accessible multimedia resources for families.
  • Work collaboratively with service providers to develop and test a model way of working to achieve improved health and education outcomes for children. An approach that can be shared and developed across authorities.
  • Contribute to teaching and training at the University Medical School, ensuring future generations of clinicians are better equipped to deliver services to help children with intellectual and developmental disorders in harmony with the wishes of their families.

We are currently recruiting a coordinator for this work who will hopefully start in January 2019. In the first instance our work will be focused in Wales, but will be rolled out across the UK as the project develops.

Two thirds of the cost of this ground-breaking and very exciting new project is being met by the Welsh Government and Innovate UK with the balance needing to be raised through the generosity of our amazing supporters. Our contribution to this project, which will have far-reaching effects, is just under £2,000 per month for the next three years.

If you would like to be a part of something amazing and help make a real and lasting difference to the lives of children with brain conditions and their families then please make a donation towards the costs – your contribution, no matter how small, will help others. You can donate online or call us on 01267 244206.

We’d also love to hear from you if you are the parent or carer of a child with a  brain condition who is experiencing problems with their mental health. Please contact us on [email protected]

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.

How much have you learned about sleep?

Take our true or false quiz to find out.

Results

Well done! Why not share your result on social media and challenge your friends to do better?

Bad luck this time. Why not check out our new sleep tips booklet and then try again?

#1 We all wake up multiple times during the night

True. As part of our natural sleep cycles we all wake partially multiple times throughout the night but most of us fall straight back to sleep and have little memory of waking the next day.

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#2 A cup of a tea and some chocolate biscuits are a good bedtime snack

False. Both tea and chocolate contain caffeine, which can make it difficult to fall asleep.

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#3 Hide and seek is a great game to include in your child’s bedtime routine

False. You should include quiet, calming activities in your child’s bedtime routine. Things like colouring, play-doh or puzzles are good options.

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#4 You should avoid playing music at bedtime

False. If your child finds music relaxing it’s fine to play music at bedtime. We’d recommend that it’s either kept on – quietly – all night or your child knows how to turn it on themselves if they wake up in the night and need the music to get back to sleep.

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#5 A visual chart can help support a bedtime routine

True. Many children are visual learners so a picture schedule can help them process the information.

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#6 Using phones and tablets close to bedtime can disrupt your sleep

True. Phones and tablets (and TVs) give out blue light which prohibits our natural melatonin production. Melatonin is the hormone that makes us feel sleepy.

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#7 It’s best if you’re in the room when your child falls asleep

False. If your child falls asleep with you in the room they’ll find it harder to go back to sleep if they wake in the night and you’re not there. This is called a sleep association. Our new sleep tips booklet has more information on this and lots of other tips and techniques.

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#8 A teddy can be used as a substitute for a parent

True. A blanket, teddy or item of your clothing can be used as a comforting object to substitute you when your child is falling asleep or if they wake up in the night. There’s more information on this and other techniques in our new sleep tips booklet.

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#9 It’s okay to let your child into your bed if they wake up early on weekends as long as they stay in bed on weekdays

False. This is called intermittent reinforcement and it’s actually the most powerful type of reinforcement there is. Letting your child get into bed with you sometimes and not others can encourage your child to ‘try their luck’ most or every night. Consistency is key – whatever you feel is manageable.

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#10 Avoid bright light in the morning

False. Bright light exposure (using something like a SAD lamp or a daylight bulb) in the morning can set our 24 hour sleep/wake cycle, helping with problems settling at night and waking up in the morning.

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