Birmingham Experts Launch Pioneering Autism Research

Leading researchers from Birmingham are today (25th October 2017) launching a major, new UK study into autism and mental health problems – and are calling for autistic people and their families to get involved.

The research is a collaboration between leading investigators at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, Aston University, and leading UK autism research charity, Autistica.

An estimated 56,000 people in the West Midlands are autistic (1,2*) – and nearly eight in ten (79%) will experience a mental health problem (3).

The research will be the first in the UK to develop an assessment tool to distinguish emotional distress caused by anxiety and depression from distress caused by physical health problems, among minimally verbal autistic people with learning difficulties. Autistic people with learning difficulties are more than 40 times more likely to die from a neurological disorder than the general population – and twice as likely to commit suicide (4).

Commenting on the new research, which will be announced at an autism science talk in central Birmingham later today, Dr Jane Waite, Lecturer in Psychology, School of Life and Health Sciences at Aston University, and one of the study’s lead investigators, said: “People living with autism and their families have highlighted that managing mental health problems is their number one priority.  But, until now, the mental health needs of autistic people, particularly those with learning difficulties, have been seriously neglected due to a lack of research and support.”

Chris Oliver, Professor of Neurodevelopmental Disorders and Director of the Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham, said: “People with learning difficulties may be unable to describe how they are feeling and others may think that changes in behaviour and emotions are caused by things other than anxiety and depression. It is therefore essential that we develop better tools to help us detect when autistic people are experiencing distress and mental health problems and ensure services include everyone and they receive timely and effective help.”

Autistica is urging the local autistic community to get directly involved in this and other planned UK research projects by signing up to its autism research network, Discover. Visit autistica.org.uk/take-part . Discover will link the local autistic community with the Birmingham investigators, as well as other top UK research centres.

Jon Spiers, chief executive of Autistica, said: “We are delighted to be working with the Cerebra Centre on this pioneering new research.  By helping more people sign up to take part in autism research projects, we can make sure research addresses the challenges that families and autistic people face, and provide them with the information, services and care that they need.”

Autistica, together with its research partners, aims to recruit 5,000 autistic people, their families and carers to Discover by the end of 2017.

Notes

About the Cerebra mental health study

A key objective of the study is to improve the identification of mental health problems in autistic people with learning difficulties, who currently represent over a third (38%) of the UK autistic population. This study focuses on designing a practical and effective assessment tool for use in the clinic to identify anxiety and depression in autistic people with learning difficulties. This important research is a collaboration between the University of Birmingham, Aston University, Coventry University, Birmingham Community Healthcare NHS Trust, Coventry and Warwickshire Partnership NHS Trust and the leading UK autism research charity, Autistica.

About the Birmingham Science Talk

The announcement regarding the new Cerebra research will be made at the first of a series of autism events taking place in Birmingham during October and November hosted by Autistica in collaboration with Deutsche Bank. The events are free and anyone can attend. For further details on the talks including location and timings, click here: https://www.autistica.org.uk/get-involved/autism-talks

About autism

• Autism is a spectrum of developmental conditions. The condition changes the way people communicate and experience the world around them. Every autistic person is different. Some are able to learn, live and work independently but many have learning differences or co-occurring health conditions that require specialist support.
• It is estimated that 1 in every 100 people in the UK is autistic.1,2
• Research suggests that the differences seen in autism are largely genetic, but environmental factors may also play a role.
• There’s currently no ‘cure’ for autism, and indeed that is not a priority for the autism community, but there are a range of specialist interventions that aim to improve communication skills and help with educational and social development.

About Autistica

Autistica is the UK’s leading autism research charity. Autistica’s research is guided by families and autistic individuals, with the aim of building longer, happier, healthier lives for all those living with autism. They support research into autism and related conditions to improve autistic people’s lives and develop new therapies and interventions. Since 2004, Autistica has raised over £12 million for autism research, funding over 40 world-class scientists in universities across the UK. For more information visit: https://www.autistica.org.uk/ Twitter @AutisticaUK

About the University of Birmingham

The University of Birmingham is ranked amongst the world’s top 100 institutions. Its work brings people from across the world to Birmingham, including researchers, teachers and more than 5,000 international students from over 150 countries.

About Cerebra

Cerebra is the charity that works with families who include children with brain conditions. They listen to them, they learn from them, they work with them. They carry out research, they design and innovate, they make and share. What they discover together makes everyone’s life better. For more information visit their website: www.cerebra.org.uk.

About Aston University

Founded in 1895 and a University since 1966, Aston University has been always been a force for change. For 50 years the University has been transforming lives through pioneering research, innovative teaching and graduate employability success. Aston is renowned for its opportunity enabler through broad access and inspiring academics, providing education that is applied and has real impact on all areas of society, business and industry.

References

* Figure extrapolated from UK population data for West Midlands
1. Brugha, T. et al., (2011) Epidemiology of Autism Spectrum Disorders in Adults in the Community in England. Archives of General Psychiatry. 68 (5), 459-66.
2. Baird, G., et al., (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 2006; 368: 210–15
3. Lever, A. G. & Geurts, H. M. (2016) Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders. 46, 6, 1916–30
4. Personal Tragedies, Public Crisis: The urgent need for a national response to early death in autism. A Report by Autistica, March 2016. Accessed at: http://s3-eu-west-1.amazonaws.com/autistica/downloads/images/article/Personal-tragedies-public-crisis-ONLINE.pdf#

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 janetp@cerebra.org.uk.

Cerebra Research Support Network – Help us make a difference

We are looking for people with lived family experience of childhood brain conditions to join our Research Support Network. Can you help us to make a difference?

What is the Research Support Network?

Our Research Support Network is made up of people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. As well as funding research, we work directly with families. By listening to families, we fund research that uncovers knowledge they want. Drawing on research, we help families develop the knowledge, skills and confidence they need to overcome challenges. Our Research Support Network will help us to listen to families and to translate research into resources that help families.

We’re looking for people who:
• are passionate about research and would like to learn more;
• can listen and learn from others;
• are committed to considering and representing the needs of families that have children with brain conditions.

What does it involve?

We need enthusiastic, thoughtful people who want to make a difference. Your role in the Research Support Network will involve reviewing and providing feedback on:
• materials developed by us for parents;
• the impact of our current research projects; and
• grant applications invited by us for funding by Cerebra.

What will you actually do?

As a Research Support Network member you will be invited to review our draft publications, participate in grant application reviews and evaluate the impact of our current research.

Reviewing draft publications will involve reading and commenting on draft publications, within an allotted time frame, before they are finalised. Your views on readability, relevance and presentation will be invited and fed into the final design of the information we provide for families.

Grant reviews will involve reading, evaluating and submitting scores and comments on grant applications within an allotted time frame. Your views will feed into final grant awarding decisions. The applications will contain a detailed summary of the proposed research in plain English and you will be asked to comment on whether the research is relevant and important to children and young people affected by brain conditions.

Evaluating the impact of our current research will involve reviewing documentation and, potentially, site visits.

Most Research Support Network activities can be done from home, but may occasionally involve meetings and site visits. You can volunteer for just one or two of the three activities or all three. This is a voluntary role but out-of-pocket expenses, including travel, subsistence and childcare to attend meetings and site visits, will be paid. You can manage your commitment by limiting how much you want to be involved in. Time constraints will apply to allow us to complete our work and deliver on our commitments in a timely manner.

Are you eligible?

We are looking for people with lived family experience of childhood brain conditions. That could be as a parent, carer, or sibling or as a young person directly affected. You do not need to have a scientific or medical background as all documentation will be written in a ‘plain English’ format.

If you are interested in becoming a member, or just want more information, please contact Georgia Mappa at GeorgiaM@cerebra.org.uk

 

Cerebra’s Mission

We believe that every family that includes a child with a brain condition will have the chance to discover a better life together.
We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.
By ‘brain condition’, we mean any neurodevelopmental disorder (NDD) that affects the developing brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

Our key values are summed up by three key words:
Positive: our optimism helps families see past every barrier.
Inquisitive: a spirit of relentless discovery drives everything we do.
Together: our researchers, practitioners and families go further when they travel together.

Current clinical practice identifies each condition individually with its own set of identifying characteristics, but many neurodevelopmental disorders (NDD’s) occur together and/or share similar risk factors, behaviours and challenges. Clinical thinking is changing and ‘multi-morbidity’ is accepted as the norm. We work across rather than within NDD’s, giving us a unique perspective within the charity research sector.

We Launch #FamilyFriday!

The Cerebra Innovation Centre has helped lots of families with their designs over the years.

From items which have everyday applications such as the Oxy-gem and the GoTo Seat, to their larger projects such as the Surfboard and Triathlon equipment which have helped children like Poppy achieve their dreams.

We want to celebrate all of our fabulous families with our new social media campaign – #FamilyFriday! Every Friday we’re going to dedicate our newsfeeds across our Facebook, Twitter and Instagram to all our families – whether you’ve been helped by the CIC or not.

We need your help! Share your positive pictures on any of our social media channels using the hashtags #FamilyFriday #CIC #CerebraInnovationCentre and we will post as many as as we can!

As well as celebrating the positivity of our community, we also want to highlight the great work that the team at the Innovation Centre does. Also they are always looking for new challenges so if you have an idea for a piece of equipment that would benefit your child, or have a problem that you think they may be able to come up with a solution for, please get in touch at cic@cerebra.org.uk.

Samuel and his family visit Cerebra HQ

Samuel, Angel, Jacky and Barry in our Fundraising Office

Samuel, Angel, Jacky and Barry in our Fundraising Office

We recently had some very special visitors at Cerebra HQ. Samuel Turner, his family and friend Angel are loyal supporters of Cerebra and have done lots if things to raise money for us including a bake sale at their local fete.

The whole family made the trip from their home in Essex to Cerebra’s Head Office in Carmarthen and spent the day in our fundraising department. They got to know some of our fundraisers and Samuel even took a donation from a supporter!

Samuel now volunteers for Cerebra by distributing our collection boxes in his local area and has even appeared on his local radio station to talk about Cerebra and the work we do.

It was lovely to meet you Samuel.

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 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.

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.