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

Autobiographical

  • 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 janetp@cerebra.org.uk or to find out more about our library look at our library page.

Accessing Public Services Toolkit Workshop Facilitators Wanted

toolkit cover image
Would you like the opportunity to help families get the knowledge they need to secure appropriate health, social care and education services to help their disabled child achieve the best possible outcomes?

We’re the charity that works with families who include children with brain conditions. We listen to them, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. What we discover together makes everyone’s life better. Join us on our journey, and who knows what we could find?

Our research shows that disabled people and their families experience great difficulties accessing support services from public bodies. Our Accessing Public Services Toolkit aims to unpick these difficulties and suggest effective strategies for resolving them. It’s based on the idea that it’s not in the best interests of public bodies to have these commonly occurring problems and that most of these problems are capable of being resolved without involving lawyers and great expense.

After receiving such positive feedback on the Toolkit in England, and in response to requests from north of the border, we’ve adapted our Toolkit to make it relevant to Scotland. We now want to roll out workshops across Scotland to assist parent/carers in using this new toolkit. It can be daunting, exhausting and sometimes intimidating to challenge public officials so by running these workshops we want to empower parent/carers to not feel fearful about complaining.

If you are a parent/carer of a child with a brain condition and you’d like to be involved in helping to run these workshops in Scotland then please send an up-to-date CV and covering letter to Beverley Hitchcock  by 5pm on Thursday the 12th October 2017. Full training will be provided, along with a daily rate of £150 (£75 for a half day) and travelling expenses.


You can find full details of the role here. 

You can find out more about our legal work here.

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)

 

Background

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.

References

1 Hastings, R.P. (2012) What is ABA for children with autism? Prof Hastings’ blog. Available online http://profhastings.blogspot.co.uk/2012/12/autism-evidence-3-what-is-aba-for.html [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 loader 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 load 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.

Sleep Practitioner Sarah Tells of her Own Experience of Sleep Training

Sarah and Theo

Sarah and Theo

Our Sleep Practitioner Sarah Coldrey is used to helping families with their sleep difficulties but, as she explains, that doesn’t mean she doesn’t experience the same difficulties with her child Theo. Theo was born prematurely and Sarah updated us on his progress as well as how she settled Theo into a better bedtime routine.

When Theo reached one we found that we were in a fairly good routine. He would wake around 6.30am, have 2 short naps a day and then bedtime was around 7pm. He was generally asleep within 10 minutes.

We followed the same bedtime routine every day. At 6.15pm he would have a bottle of warm milk downstairs, we would then go upstairs and Theo would have a bath for about 15 minutes. We would then go straight to the bedroom and get into pyjamas. Once ready for bed we would sit and read a few stories in dim lighting. I would then carry him to his cot and sing twinkle twinkle little star, I would leave the room and Theo would self-settle to sleep in a dark room with black out blinds, sometimes he cried but it was only for a minute or two.

Between ages one and two Theo slept generally very well and we felt lucky. Sometimes he would wake in the early hours but we found that this was probably because his room was getting quite cold and so we put a heater in his room over the winter that came on around 4am. This seemed to improve the situation and Theo would sleep until at least 6am.

Around the age of two, Theo started to wake in the night. I found this confusing as he was able to self settle to sleep and so I didn’t feel there was an obvious reason why he wouldn’t be able to re settle himself during the night. I did however feel that Theo was going through some developmental changes. His language was coming on and he was starting to potty train. He was also very clingy when I dropped him to nursery (normally he couldn’t have cared less when I left him)

For the first few night wakes, it was such a shock to the system that we just bought Theo into our bed as most people do (even though I’m a sleep practitioner, I’m still human and the need for sleep took precedent).

For some people co sleeping works well, but for us it did not as Theo tended to fidget all night and somehow take up nearly an entire double bed and so we needed a new plan.

Initially I used a chair bed (a fold out foam bed) and would lay on the floor next to his cot and sometimes hold his hand.

After doing this for a few days, I decided I was being too soft and wanted to move things along, so I moved onto a single bed that was in his room but was much further away from his cot. I felt pleased about this because he wasn’t coming into our bed and I was able to create a bit of distance between him whilst still being in his room.

Fast-forward a couple of months, Theo seems more settled in himself and goes to nursery happily again. Some nights he wakes in the night and we will leave him to self-settle back to sleep and some nights we know that he probably needs the comfort of having us nearby and so we still go into his room and sleep on the single bed. This is not ideal but it works for us in our real life. Theo continues to self-settle at bedtime and so I’m confident his good sleep habits will return.

However – I know we have a whole new battle ahead of us when we transfer Theo from a cot to a bed!

You can find out more about our Sleep Service here, or call our freephone helpline on 0800 328 1159.

 

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 71b 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”.

Support for Global Developmental Delay

Our Regional Officer Lilly Fahey recently helped Emma, mum to 12 year old Rory who has Global Developmental Delay. Emma told us their story.

“I am a mum; my son Rory will be 12 years old this month.

Ever since he started primary school he has been ‘Statemented’. Before Rory started Primary school we had ‘Portage’ come round to my home to see Rory and help encourage him to speak. When he was at pre-school they were concerned that he wasn’t talking and he wasn’t able to keep up with his peers.

He was born 4 days late and was delivered by emergency Caeserian. He had trouble breathing he was in the Neonatal unit for just over 2 weeks in a incubator. He had trouble feeding and was bottle fed.

He struggled throughout mainstream school, most of Primary and the start of Middle. He could not cope there at all. I used to get phone calls every day to say I had to go and collect him because he was struggling. He was under the Senco, he had one-to-one support and also had one-to-one at Primary. He had one-to-one every day at Middle school.

I had a meeting with the Senco in the end because Rory refused to go to school and she actually said, and I was thinking along the same wavelength as her, that ‘Rory will not cope in year 6 or when he gets older’. By that time I was so relieved that the Senco could see that he was struggling. About a year and a half ago Rory was Diagnosed with Global Developmental Delay (GDD). The Paediatrician said that even though he’s 11, Rory has the mental age of 5 years old.

In year 5 at Middle school we pushed for a specialist Provision for him. He is now attending a specialist school. He started last September and he now loves going to school. He does have his moments every now again. He goes to school by Transport every day, which he loves. He’s a different boy now.

Also not long ago he was diagnosed with a few heart problems including ‘narrowing of the arteries’ and ‘hole in the heart’. One of his valves isn’t working as it should be. He has sensory issues, anxiety issues and is also on the autistic spectrum.

Rory’s father and I divorced back in 2010 but I am now remarried. I got married again in 2013. Rory Loves my hubby Neale, he gets on really well with him. My hubby gets on well with Rory.

Also I’ve not long ago been diagnosed with (GDD) Global developmental delay myself”.

The Arctic Rider Takes on New Alaska Challenge

Gordon Stuart

Gordon Stuart

When Cerebra Ambassador Gordon Stuart first started his Arctic Rider project, he couldn’t have imagined the distances he would cover and the huge amount of money he would go on to raise for Cerebra and other charities close to his heart.

He first started The Arctic Rider project as a way of using his passion for motorbikes to help raise money and awareness for Cerebra, Tiny Lives Trust and One Young World – all of which Gordon is an Ambassador and an avid fundraiser for.

He was soon setting himself motorbike related challenges as a way of raising funds and also keeping his growing army of loyal followers up to date with his exploits through Facebook, Twitter and YouTube .

In 2014, Gordon rode 6,000 miles solo to Nordkapp in the Arctic Circle and back, raising over £5,000 for Cerebra. This first challenge was known as ‘Arctic Ride 2014’.

In 2016, he continued by completing the UK ‘Iron Butt Challenge’, riding the length of the UK from Lands End to John O’Groats in under 24 hours. Gordon completed the ride in 18 hours raising over £1,600 for Tiny Lives Trust.

Gordon’s next challenge has been dubbed ‘Arctic Ride Alaska’ – an attempt to ride the length of Alaska from Anchorage in the South to Prudhoe Bay in far North Alaska, deep inside the Arctic Circle. This will require Gordon to conquer the notorious ‘James W. Dalton Highway’, which is often cited as one of the world’s most dangerous roads due to its remoteness, road quality and demanding weather.

The Dalton is a 414 mile stretch of mostly gravel road which was designed as a supply road to support the Trans-Alaskan Pipeline, which runs parallel to it. It is one of the world’s most remote roads with only 3 towns and 3 fuel sops along the entire stretch.

Gordon is hoping that through this challenge, he can prove that an ‘average road rider’ can conquer the Dalton.

Gordon will be taking on the Arctic Ride Alaska challenge in summer 2018 and will be raising money for both Cerebra and The Tiny Lives Trust. You can donate through his Virgin Money Giving page.

You can keep up to date with Gordon’s progress as he prepares for the challenge through his blog.

 

Team Cerebra at the Superhero Series!

Rob and Poppy with Anthony, Rhys and Kevin

On Saturday 19th August two very special Superheroes joined team Cerebra for the first ever Superhero Triathlon at Dorney Lake, Windsor.

The Superhero Tri is the UK’s one and only disability sports series for the everyday Superhero and their family and friends. It was also particularly exciting because it was the first ever Superhero Tri so our team didn’t know quite what to expect!

Returning to team Cerebra was triathlon veterans Rob and Poppy who have previously taken part in the Cardiff and Swansea Triathlons using equipment designed especially for Poppy by the Cerebra Innovation Centre.

Joining the team was Anthony, his son Rhys and family friend Kevin. Kevin has previously taken part in a number of “Tough Mudder” events but this was the first event of this kind that Anthony has participated in.

Anthony said: “Me and Kevin wanted to do something with Rhys not for him and that’s why we entered the Superhero Triathlon. We wanted to give Rhys an experience he has never had and will certainly remember.

Words cant describe how much gratitude we have for the support and generosity given to us by Cerebra. The team worked with us to give our son the biggest day of his life. Every step of the way Cerebra have shown nothing but enthusiasm and commitment to making it happen! An amazing charity with such amazing people. Massive thank you!”

They all did us proud and crossed the finish line with a mixture of excitement and relief!

So far, Rhys, Anthony and Kevin have raised over £1,000 for Cerebra which is incredible! The whole team has raised over £2,000 so thank you to everyone who has donated so far. You can donate to the group campaign here.

School Transport Report

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.

The students looked at 71 websites and identified serious failings in the information provided to families.  Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).

You can read the full report here.

If you have a school transport problem, our Parent Guide explains what you can do to solve it.