Category Archives: Information and Advice

New books in our library

We’ve got lots of great new books on a range of topics available to borrow now from our library.

Autism including Asperger Syndrome

AV6731 – Autism and Me (book & dvd)
Rory Hoy

L6732 – A Parents’ ABC of the Autism Spectrum
By Stephen Heydt

L6728 – Toby and Sox: the heartwarming tale of a little boy with autism and a dog in a million
By Vikky Turner


L6729 – Language for Thinking
By Stephen Parsons

Education Teaching and Learning

L6733 – Provison Mapping and the SEND Code of Practice: making it work in primary secondary and special schools
By Anne Massey

Growing Up

L6734 – When Young People With Intellectual Disabilities and Autism Hit Puberty: a parents’ Q&A guide to health sexuality and relationships
By Freddy Jackson

Law and Rights

L6735 – Special Needs and Legal Entitlement: the essential guide to getting out of the maze
By Melinda Nettleton

Personal Care including Feeding, Diet and Toilet Training

L6736 – What To Do About Smearing: a practical guide for parents and caregivers of people with autism developmental and intellectual disabilities
By Kate E Reynolds


L6730 – Sleep? What’s That? The incidence and impact of sleep problems in families of disabled children
By Gillian Cowdell

Special Needs in General

L6737 – Achieving Successful Transitions for Young People with Disabilities: a practical guide
By Jill Hughes

Therapies and Treatments including Medication

L6738 – Music Therapy for Multisensory and Body Awareness in Children and Adults with Severe to Profound Multiple Disabilities
By Roberta S Adler

Children’s Books

Autism and Aspergers

C0273 – Through the Eyes of Me
Age 5 and under

C0275 – Creating Autism Champions: autism awareness training for Key Stage 1 and 2
Age 8 – 12


C0276 – It’s Raining and I’m Okay: a calming story to help children relax when they go out and about
Age 5 and under

If you’d like to borrow any of these books, completely free of charge, contact our librarian on To find out more about the library check out our library page.

Our LEaP project helps Rhiannon get the continence supplies she needs



Our LEaP Project helps Rhiannon get the continence supplies she needs and our template letter could help you to write to your local health board.

Our Legal Entitlements and Problem-Solving (LEaP) Project supports families who are struggling to get access to health or social care services. Louise contacted us for help with getting continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome. Louise and Rhiannon live in North Wales.

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. Louise was also concerned about the quality of the nappies, as the adhesive fasteners seemed to be aggravating Rhiannon’s skin and would often break off. We told Louise about some guidance published by the Welsh Government , which describes the level of service that patients can expect to receive. This guidance says that the ‘4 a day’ maximum is just a general rule and that the actual number of products supplied will depend on a child’s individual needs. The guidance also says that families can ask for a re-assessment if their needs change. Louise took our advice and asked for a reassessment.

During our research into Louise’s problem, we noticed that another part of the guidance 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 explain Louise’s situation and highlight the contradiction between the different parts of the guidance.

In response to our letter, the Welsh Government asked the local health board to address Louise’s concerns. It also agreed to update the guidance to make it clear that the number of nappies supplied should always meet a child’s assessed needs – in the meantime, it agreed to contact every health board in Wales to explain the guidance, so that other families weren’t told that they could only have 4 products a day.

The health board’s head of nursing contacted Louise and we’re pleased to report that Rhiannon is now getting the nappies that she needs. The local continence team has told Louise that it will review Rhiannon’s needs on a regular basis.

Do you live in Wales? Has your local continence team said that you can’t have more than 4 continence products a day, even if your child needs more? If so, use our template letter below to write to your local health board.

If you live in England and you’ve had similar problems to Louise, contact us at


Template letter to ask the local health board for more continence products to meet a disabled child’s needs.(this letter applies to Wales only):

Please change or delete the green text as appropriate.

Dear Sirs

Continence products for my [son/daughter][name]

My [son/daughter] [name] is [age] and s/he has [disability/condition].

I was recently told by [name of person] that [child’s name] is only entitled to a maximum of 4 continence products per 24 hours. However, [child’s name] needs more products than this because [explain why your child needs more because of their condition].

I recently read an article in Cerebra’s newsletter, which explained that the Welsh Government has published guidance called the “All Wales Children and Young People’s Continence Guidance and Care Pathway”. This guidance says that:

“the number of disposable products supplied per 24 hours will depend on the individual child or young person’s needs, but would normally not exceed 4 products per day without prior consultation with the Continence Service”

This means that whilst the health board can have a ‘general rule’ of 4 products per 24 hours, it should always supply enough products to meet a child’s assessed needs. I understand that the Welsh Government’s Chief Nursing Officer, Professor Jean White, is arranging a review of this guidance to make this meaning clear to all health boards.

As such, I am writing to ask the health board to:
– assess [child’s name]’s needs within [give a timescale you feel is reasonable], and
– provide a sufficient number of products to meet his/her assessed needs.

Yours faithfully

Your name

School Transport in Wales: A guide for parents

This Guide explains the legal duties on local authorities to provide free school transport for disabled children in Wales. We aim to help parents and carers understand their legal rights, but you should not rely on this Guide as legal advice. The law relating to school transport can be complicated and you may need to take independent legal advice to find out how the law applies to your particular circumstances.

Download School Transport in Wales: A guide for parents (PDF)

This Guide explains the law which applies in Wales. We have published a separate guide on the law in England, which is available here.

First published: 2017 This edition: 2017 Review date: 2020

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

New Book on Autism in Our Postal Lending Library

We have a new book available from our Postal Lending Library.Through the eyes of me

‘Through the Eyes of Me’ by Jon Roberts

ISBN 9781912213009  £6.99

Through the eyes of a young child with autism. This lovely picture book is perfect for describing autism to a very young child. If you have a young child or grandchild with autism this would be a special book to read with them or their siblings. The little girl in the book is Kya, she tells us all about the things she loves to do, the things that interest her and the things she doesn’t like. Like any child with autism she has definite preferences. It is a beautifully illustrated book with pictures that weave in and out of the text. It is written by Kya’s dad, who says “we are all unique and precious and should embrace and love those differences with all our heart and being”.

For more information about our library please email

Accessing Public Services in Scotland: A problem-solving toolkit

Scots law provides powerful rights to education and support from other services, but this alone is insufficient. The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. This guide aims to help unpick these problems and to develop effective strategies for resolving them.

You can download the toolkit below.

Download Accessing Public Services in Scotland: A problem-solving toolkit PDF

Published 2017. This edition 2017. Review date 2020.

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Books on ADHD in the library

Check out the books on ADHD that you can borrow from our postal lending library for free.

For parents

  • L6329 & L6365 ADHD Living Without Brakes by Martin Kutscher
  • L6450 & L6578 Calm Your Hyperactive Child: coping with ADHD and other behavioural problems by Sabina Dosani
  • L6727 Power Parenting for Children with ADD/ADHD: a practical parent’s guide for managing difficult behaviours by Grad Flick
  • L6508 Helping Hyperactive Kids A Sensory Integration Approach: techniques and tips for parents and professionals by Lynn Horowitz
  • L6338 The ADD/ADHD Checklist: a practical reference for parents and teachers by Sandra Rief
  • L6400 ADHD Handbook for Families: a guide to communicating with professionals by Paul Weingartner
  • L6401 Step by Step Help For Your Children with ADHD: a self-help manual for parents by Cathy Lever-Bradbury
  • L6402 Helping Kids and Teens with ADHD by Joanne Steer
  • L6379 ADHD Homework Challenges Transformed: creative ways to achieve focus and attention by building on ADHD traits by Harriet Hope Green
  • L6459 What Causes ADHD? By Joel Nigg
  • L6559 The ADHD Parenting Handbook: practical advice for parents from parents by Colleen Alexander-Roberts
  • L6649 ADHD Does Not Exist: the truth about attention deficit and hyperactivity disorder by Richard Saul
  • L6715 The Family ADHD Solution: a scientific approach to maximizing your child’s attention and minimizing parental stress by Mark Bertin


  • L6020 Marching to a Different Tune: diary about an ADHD boy by Jacky Fletcher
  • L6248 Only a Mother Could Love Him by Ben Polis
  • L6135 ADHD: an autobiography of survival by Dr Richard Kuendig
  • L6306 ADHD: a challenging journey by Anna Richards
  • L6507 The Boy From Hell: life with a boy with ADHD by Alison Thompson

For kids

  • C0216 Can I Tell You About ADHD? A guide for family friends and professionals by Susan Varney
  • C0117 Girls Guide to ADHD by Beth Walker
  • C0062 Putting on the Brakes: young peoples guide to understanding ADHD by Patricia Quinn
  • C0061 Jumpin Johnny Get Back To Work by Michael Gordon

Novels for kids

  • C0058 Sparkys Excellent Misadventures by Phyllis Carpenter
  • C0059 Eagle Eyes: a child’s guide to paying attention by Jeanne Gehret
  • C0069 Joey Pigza Swallowed the Key by Jack Gantos
  • C0070 Joey Pigza Loses Control by Jack Gantos
  • C0071 What Would Joey Do? By Jack Gantos

Sensory Items

  • Fidget Kits
  • Sensory Seeking Kits
  • Relaxation Sensory Kits

To borrow any of these books contact or to find out more about our library look at our library page.

My Experience of Applied Behavioural Analysis

Razwana Mushtaq, whose 5 year old daughter has autism, discusses her experience of getting a diagnosis for her daughter, recent research on early intervention and what it is like running an Applied Behavioural Analysis (ABA) programme, with the support of UK Young Autism Project (UKYAP)



As parents we want our kids to be happy and independent. We need to support them in order to reach their full potential. As a parent myself, I would do whatever it takes to give my children the best possible. I have four children and do not treat my youngest child, who is five years old now, any different to my other children just because she has autism. I have the same dreams and hopes for her future.

She was delayed in all areas of her development from a very young age and was a very quiet baby. On her first birthday I saw my little girl was enjoying her day, however, over the next twelve months everything changed; her behaviour became different, she started to chew and eat everything in her reach, which could be paper bags, beads, etc. She did not like to be with others as she just would run around and flap her hands, she didn’t make eye contact or respond to her name, she had no language and I didn’t know what to do to get her to sit or play.

She finally got a hearing test at the age of two, which she passed, but the consultant told me to get a referral to a specialist as she was delayed in all areas of her development. I visited my GP to make a referral for further assessments, then things started to move forward at the slowest pace possible and her behaviour was not improving. In the mean time I had a child with difficult behaviours and sleep issues which I didn’t know how to manage. To feel such helplessness without any support, life was as difficult as could be.

We waited for over 9 months for a professional assessment, and in January 2015, a day before her 3rd birthday we finally got a 3 day assessment. It was such a long process, mostly of waiting for appointments with nothing to offer in-between. I felt it was a waste of time that could have been spent on supporting us both in some way. To have the diagnosis of autism confirmed was upsetting indeed, even though I was very much expecting it. But to know your child has disability for life was painful and I felt helpless. I was left not just to deal with her difficulties and behaviours but also without a clue on how to manage all of this. Not one professional mentioned early intervention or anything else to support us. At this point I was losing all hope; I was mentally and physically tired from running after her all day, trying to stop her from eating inedible items and hardly sleeping at night. My other children were all affected and us as a family.

Discovering Applied Behavioural Analysis (ABA)

Following the lack of professional support we received, I knew I had to take control of the matter and do something myself. I began to do my own research into autism and how it could be treated. After spending few hours I came across early intensive behavioural intervention (EIBI) and Applied Behavioural Analysis (ABA). ABA comprises specific teaching methods developed through extensive research and involves teaching in a systematic manner by breaking down tasks. Intervention is structured so that appropriate behaviours such as play, language and socialisation are maximised through prompting and positive reinforcement.

In a blog by Professor Richard Hastings, ABA for children with autism is described as ‘a values-driven, child-centred, developmentally-informed, evidence-based, effective use of principles of learning to help children with autism achieve their full potential.’ (1)

I decided to start an early intervention programme as soon as possible with my daughter, as she had lost so much time already. Recent research has shown significant gains from early behavioural intervention on children’s early skills (cognitive skills, joint attention, play and stereotypic behaviour), with the greatest gains seen in the children who entered treatment prior to their second birthday. (2)

When my daughter was three, we started the UCLA Young Autism Project model of ABA founded by Dr Lovass (3) as it was a dynamic model and tailored to the needs of the child, while relying on behavioural principles and supported by extensive research (4 ). The programme is specifically focussed on my daughter’s speech and language, communication, play, social and self-help skills.

The only providers in the UK I could find were UK Young Autism Project (UKYAP), who offer ABA trained consultants to design a personalised ABA intervention for the child and give face-to-face supervision and support to help parents and/or tutors implement the programme. The UKYAP consultant made visits every 2 weeks, as my daughter’s needs and the teaching methods used needed to be reviewed often as well as regular evaluation of progress. The programme required at least 35 hours of teaching per week and is best to be done in a homebased setting to begin with. Through this type of early intervention, UK Young Autism Project report that ‘a sizable minority of children have been able to achieve normal educational and intellectual functioning by seven years of age. For those that do not achieve typical levels of functioning, significant improvements in language and other important skills have been achieved, while inappropriate behaviours decreased’ (5 ).

I thought this was totally amazing as some of these children wouldn’t otherwise be able to reach such goals.
I soon found out that this intervention was not cheap. I couldn’t afford to hire tutors so I decided that I would do some of the hours myself and try to get volunteers from the Psychology Department at the local University, which I manged to do. Parental commitment is needed as consistent teaching is important and to follow through and generalise the skills into daily life. My daughter’s programme is now funded by The Giving Tree Foundation for a year and we have weekly visits from the UKYAP consultant and the tutors are provided by UKYAP. This has taken her ABA programme to the next level, with consistent teaching that is much more effective for her learning and huge support for myself.

The progress we saw following ABA

My life changed as I managed my daughter’s ABA programme, liaising with tutors and working towards her targets, but within a week of starting the programme she was sleeping better and she was matching items within a few days. Imitation was the biggest gain I feel she made in the early days of the programme. This was a little girl who couldn’t copy others but now she looks and tries to copy those around her. Each task had to be repeated several times a day and tasks were broken down to help her understand them. The reinforcement used motivated her and any prompts given were faded out. Each day she spent learning at a pace suited to her and we felt the methods were very effective.

She is now catching up on some of her delayed skills including gross motor, fine motor, imitation, some play skills, matching colours, shapes and so much more. She is learning to read and write. She can dress and undress herself. Her eating issues have been resolved and she is now toilet trained. She can sit nicely and do a 20 piece puzzle independently with an adult giving her praise to continue. She has made amazing progress in 2 years. She is beginning to say words and is able to express her needs through PECS and now tries to interact with others, she smiles back and responds to every call of name. We get to see those beautiful eyes staring right at us. All of these are priceless to us, I never thought this would be possible in such short time.
What I learned from my journey is that if you want your child do well in life, you have to take control of the matter yourself. The system does not seem to be offering early intensive behavioural intervention (EIBI) for every child that might benefit from it, when there is clear evidence that it is key from a young age. I strongly believe we need invest into their future now and not in 20 years when billions will need to be spent on the many young adults with autism that will need significant support.

I have struggled in running my daughter’s ABA programme, it has been the biggest challenge of my life but I was not going to let her down and prevent her from having the best education possible. If you find yourself in the same position as me and feel unsupported, I recommend doing some research yourself to find out about evidence based interventions like EIBI.

©Razwana Mushtaq 2017, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.


1 Hastings, R.P. (2012) What is ABA for children with autism? Prof Hastings’ blog. Available online [Accessed 01 August 2017]
2 MacDonald, R., Parry-Cruwys, D., Dupere, S., Ahearn, W. (2014) Assessing progress and outcome of early behavioural intervention for toddlers with autism. Research in Developmental Disabilities 35, 3632–3644
3 Lovaas, O. I. (1987) Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
4 Eldevik, S., Hastings, R.P., Hughes, J.C., Jahr, E., Eikeseth, S., & Cross, S. (2009) Meta-analysis of Early Intensive Behavioral Intervention for children with autism. Journal of Clinical Child & Adolescent Psychology, 38, 439-450.
5 UK Young Autism Project (2009) Our commitment to providing the most effective treatment for autism [Accessed 01 August 2017]

Impact of Headbanging and Sensory Issues on Sleep

One of our Sleep Practitioners explains  how she helped a family struggling with head banging problems:

“Mary came to one of our sleep clinics looking for advice on her  eight year old son George who has epilepsy.

George was head banging every night, throughout the night. Mary was concerned, as he would head bang so vigorously that it would wake him up and therefore he has a very disturbed night, as did the rest of the family.

Some research suggests that head banging can be reduced by introducing a different sensory input. I suggested introducing a fan at bedtime especially as we were having quite warm weather. A fan creates white noise (a steady, unvarying unobstructive sound).

I followed up with Mary after a couple of weeks and was amazed to hear that the head banging had significantly reduced, to the point where the sores on his head had improved dramatically. I didn’t want to count my chickens, and wondered if it was just a short term fix so agreed to follow up with Mary again in another few weeks. When I spoke to Mary again I was delighted to hear that the head banging had remained reduced and George was getting significantly more sleep.

Mary said: “We have tried so many things in the past, weighted blankets, music, lights on and off and even tried white noise through a machine but the fan we use is much louder than you would think would be conducive to good sleep. Since using the fan he only wakes a couple of times a night, can usually be resettled easily and even says in bed until around 6 am. For some reason the loud noise really calms him. We would never have risked it, had it not been suggested. Thank you.”

You can find out more about our Sleep Service here.

Support for Potocki-Lupski Syndrome

Mum Lisa, who’s son Kyle has Potocki-Lupski Syndrome, tells us their story.

“Kyle was born by natural birth on June 13th 2013 weighing 7lb 5oz. He had distinctive facial features like elf and his arms and legs were very thin with brittle bones.

At around 3 months old I got him weighed by the midwife at the clinic and explained that Kyle wasn’t really interacting with anything. At that age he should be able to sit up and do a bit more than what he’s doing now – I explained what his sister did at the same age.

They replied that ‘boys can be lazy and to monitor it’. I was quite firm and stuck to my guns as my mother instinct kicked in and I told them something isn’t right with Kyle so they eventually referred me to hospital for Kyle to have some tests.

It was a long process – he got sedated (put to sleep). It was heart wrenching to watch my little bubba being pushed on this trolley down the corridor by nurses with his little body in the middle of it. He had a CT scan of his brain. One of the best consultants saw him and the test came back that he had a shadow at the back of his brain. It was an abnormality but nothing too alarming/to worry about it.

Kyle had test after test done and finally after a long wait we got the answer that Kyle was born with a missing chromosome in the body. He was diagnosed with chromosome 17 (Potocki-Lupski Syndrome). It makes the facial expressions look elf-like – a big forehead, quite a broad nose, thin arms and legs, brittle bones and developmental delay with walking and talking.

So all that explains what I thought and knew all along – that Kyle was born differently.

He is now 4 years old a happy, smiling little boy who lives with me his mum and his 7 year old sister Layla. Kyle and his sister have a very special bond together  – they’re close  and she looks after him.

Kyle is mentally at the stage of a 2 year old and in September he will be starting school. He is starting to put sentences together but mainly says one word like mummy, daddy, grandma, what’s that, hi, no, yes etc. I’ve learnt to sign language with Kyle so he can communicate with me I also have picture cards at home to use with him.

He’s had on going support from his paediatrician, pre-school, portage, speech and language and the eye clinic as he was born with a lazy eye. At the beginning he had a physiotherapist to help with his joints but got discharged a while ago now. It’s been a hard, challenging journey but I’ve had a lot of support from friends, family and the professionals.

He is my special little boy. He is unique and I wouldn’t have him any other way. I say to him he has his own little super power because of his missing chromosome. I have a good feeling and faith that Kyle will catch up in life, it will just be a time thing.

Thank you for reading my story”.