Poppy to Take on Second Triathlon Challenge

Rob and Poppy

Rob and Poppy

Last year, eleven year old Poppy Jones realised her dream of competing in the Cardiff Triathlon. This was particularly challenging for Poppy as she has chronic lung disease and quadriplegic Cerebral Palsy. This means she can’t sit, stand, roll or support herself and life is a daily challenge for her, but having a life-limiting condition doesn’t stop her having fun.

Poppy’s Dad Rob helped make her dream come true by pushing/pulling her around the course using custom made equipment specially designed by our Innovation Centre (CIC).

The father and daughter team will be once again rising to the challenge, taking part in the Swansea Triathlon on 28th May.

Rob’s motivation for doing this is simply to help his daughter: “taking part in this triathlon is so exciting for her and psychologically it will really benefit her. She gets so frustrated at the limits her condition puts on her and this will really focus her mind on what she can do. Poppy doesn’t think ‘I can’t’ but rather ‘with a little help I can’. I’ve got my work cut out though as Poppy doesn’t want to just take part – she wants to win!”

The team at team at the Innovation Centre, who designed the equipment that allowed Poppy to take part in the Triathlon last year,  took this opportunity to re-design some of the equipment to allow Poppy to compete on an even larger scale.

“Last year, we designed a chair and boat in Poppy’s favourite colour – yellow,” says Dr Ross Head from the CIC.

“For this year’s challenge, we’ve modified both products to make them more efficient; to make them faster – and to change the look to match Poppy’s new favourite colour, orange!

“Poppy’s also grown a lot since last year’s triathlon and the boat we built last year was too small. So I redesigned the boat to be bigger, however this meant it would be heavier, so I started from scratch using everything I had learnt about hydrodynamics to ensure the boat would be fast, efficient and create the minimum resistance so that Rob could swim the course. This year’s boat uses a V-shaped tri- hull. This allows speed through the water but is given stability by the two smaller outrigger hulls.

“Poppy’s Triathlon Chair has also been upgraded to make it faster and more comfortable. The guys at V-Trak very kindly donated some high quality wheels to help them roll to the finish line. It has upgraded bespoke components which will ensure efficiency, a speedy transition from cycling to running and ensure Poppy’s safety.“

The CIC team recently tested the boat out on the water (see below for photos).

You can sponsor Rob and Poppy through their Just Giving page.

 

 

Improving early intervention for children with autism

Zarbanoo Rajput

Zarbanoo Rajput BA (Hons), mum to a 15 year old with autism and an active member of ABAAccess4all parental campaign discusses recent research on the use of early behavioural intervention for children with autism across Europe, and reflects on her own experience in the UK.

“Autism Spectrum Disorder is a developmental condition affecting language, communication, behaviour, and socialization. At one end of the spectrum, there are individuals who can live an independent life, at the other end, there are children who start their school life with little or no language, display challenging behaviours, cannot use the toilet and have severe learning disabilities. Inclusion in mainstream education is uncommon for children at the more severe end of the spectrum, they are likely to be educated in a special school or unit.

Our beginning

I am a mum of 15-year-old teenager with autism who received an official diagnosis when he was aged four and half. Whilst it was difficult to come to terms with this diagnosis, we quickly pulled ourselves together and asked ‘what can we do to help our son?’, ‘What is the best thing to do?’ This is where the madness began. Every professional we spoke to had a different opinion. We had no idea who was speaking the truth. It was extremely difficult to access accurate information from a reliable source, let alone be supported with the intervention approach, Applied Behaviour Analysis (ABA), we ended up choosing.

For more information about Autism and Applied Behvaioural Analysis (ABA) please see Professor Richard Hastings blog ‘What is ABA for children with autism for?’

Early intervention across Europe

I was thinking back to our family’s experience when reading a recent research study: Use of early intervention for young children with autism spectrum disorder across Europe.(1 ). The study was written by a total of 40 researchers from 32 Universities across Europe. The purpose of this research study was to get a picture of the use and the weekly number of hours of early intervention/therapy provided for young children with autism spectrum disorder (ASD) in a number of European countries.

Parents from 18 European countries took part and completed an online survey, which asked about current use of intervention (type and number or hours per week) received at home, school and in a clinic setting such as a child disability clinic. In total, 1680 parents who had seven-year-old children or younger with autism spectrum disorder took part. Only parents of children up to the age of seven were in the study as by this age the majority of European children have started school.

The type of interventions the study was interested in included: behavioural intervention, developmental and/or relationship based intervention, speech and language therapy, occupational therapy, other educational and psychological interventions, and parent training. When parents were asked about their use of a specific intervention type, it was noted that similar/identical therapy programmes were available with different names. Therefore, intervention examples were given specific to each country, such as Applied Behaviour Analysis (ABA) and Pivotal Response Training (PRT), when asked within a broader category question such as ‘is your child receiving behavioural intervention?’

The study found that there is variability in the use and intensity of early intervention between European countries. Seventy four percent of parents from the UK reported that their child received an intervention. Indicating that 25% of children in the UK were having no early intervention at all. The average intensity of early intervention in the UK per week was 6.97 hours. Poland was found to have the best early intervention rates in this study, with 98.7% of children having some form of intervention before they are 7 years old.

Eighteen percent of parents of children with autism from the UK were reported to be receiving a behavioural intervention (7.54 hours on average per week), 8.1% a developmental or relationship based intervention (4.57 hours), 62.2% speech and language therapy (1.11 hours), 26.1% occupational therapy (1.24 hours), 23.4% other educational and psychological intervention (7.93 hours) and 23.4% were receiving parent training (1.61 hours).

The study concluded that while there is evidence that each and every child with autism needs to access individualised, multidimensional and multi-disciplinary intervention, almost 10% of parents who took part in this study throughout Europe, reported no early intervention at all for their child. The UK was one of the worst performing countries, with 25% of children studied receiving no early intervention. The authors reiterate the importance of training professionals in identifying and treating ASD as early as possible so families are not left unsupported in day-to-day life.

Our experience of early intervention

The study outlined above suggests that children receiving behavioural intervention in the UK are receiving an average of 7.5 hours of therapy per week. While this is a good start only 18% of UK parents access this level of behavioural intervention. This number is low and reflects our own experience as well. Currently, post diagnosis, parents are referred to Early Bird and Early Bird Plus programmes, which are run by the leading autism charity, the National Autistic Society (NAS). Referrals are also made to other services such as Speech and Language Therapy, Occupational Therapy, Educational Psychology, and specialist Communication/Autism Teams. We received a diagnosis back in 2005-2006. Note, no referral was made to a behavioural specialist. It seems ABA or other evidence based behavioural interventions are not routinely offered by the NHS for young children in the UK. Reading this, one might think how lucky we are to have so many services available to our families. Unfortunately once you go through them all, you discover that, it is all flash and no substance.

Once we managed to take the diagnosis in, we started reviewing literature about autism interventions. The child psychiatrist we saw at diagnosis said that the more the child’s language develops, the better the prognosis. We were very concerned about Elias’ future. Aged four and half at diagnosis, Elias though had some language, was very far behind his peers. He couldn’t label colours, numbers, he had no understanding of phonics, and had major problems with haircutting and bath time, to name a few. Our family needed help, Elias needed help, help I was hoping to find going through the Early Bird Plus programme. Unfortunately we didn’t see the progress we were hoping for, so we began looking elsewhere.

We were fortunate to have heard about someone who had a special educational needs tribunal bundle to share with parents. The wealth of information available in this bundle opened up our eyes. There were studies showing positive results for children with autism receiving an ABA programme, including one, which was focused on the four to seven age range, which applied to us. Other studies were for younger children. Overnight, we became familiar with names of researchers and research studies we would never have known were out there. However, the minute we started mentioning to professionals the term “ABA” and our interest in using this approach with our son, all doors started to close in our face. We were steered towards a programme called Treatment and Education of Autistic and related Communication handicapped Children, also known as project TEACCH. ‘What did we do wrong?’ From our perspective, we made an educated decision about the best intervention option for our child, for which we were punished. We strongly feel more evidence based early intervention in general is needed in the UK, with currently too many children and families missing out.

Parents working together using research evidence

In the UK, many parents of children with autism I have met are very unhappy about the situation with autism diagnosis and early intervention, hence the need for ABAAccess4ALL campaign. ABA Access4All aims to improve UK understanding of and access to professionally managed ABA therapies for children with autism and other disabilities.

Many parents I have spoken to feel they have been misled about ABA and are angry about their child/children’s precious time being lost. Professional recommendations about early intervention for children with autism in general suggests that maximum gain can be made between the ages of two to four. However, diagnoses are often provided late or when early diagnosis is made, accurate information about effective interventions is not given to parents.

I believe that parent-led campaigns for UK services to make available evidence-based approaches for children with autism are an excellent way to use research evidence to give children the best start in life. ABAAcess4all is an example of one such campaign with an evidence-based focus. We will continue to strive for better services in the hope that all children and families receive what they need without parents being driven to bankruptcy, physical and mental exhaustion, and experiencing significant strain on their family relationships”.
©Zarbanoo Rajput 2016, 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. Salomone, E., Beranová, Š., Bonnet-Brilhault, F., Lauritsen, M. B., Budisteanu, M., Buitelaar, J., … & Fuentes, J. (2015). Use of early intervention for young children with autism spectrum disorder across Europe. Autism, Vol 20 (2) 233-249

1000 Families Study – Age Range Extended

Are you the mother, father, or caregiver of a child aged between 4 and 15 years, 11 months who has a learning disability?

Our 1000 families study, carried out at the University of Warwick, is exploring the experiences of family members who live with a child with a learning disability.

The study has recently received permission from the NHS Research Ethics Committee to extend the age range. We can now include children in the study if they are between the age of 4 and 15 years and 11 months (previously 4 and 11 years and 11 months). We heard from a number of families who would have liked to take part, but were unable to because their child was between the ages of 12 and 16 years. If this is you, we’d  love to invite you to get involved.

We are really keen to survey at least one person in the family (especially, a mother and a father) to explore whether family members have similar or different experiences and capture the experience of the whole family. We want to make this the largest study ever of families of children with learning disability in the UK and help shape future information and support.

University of Warwick logoIf you are the parent/caregiver of a child with a learning disability between the age of 4 years and 15 years and 11 months and would like to take part in a large scale family research project, please follow this link to find out more and complete the online survey.

If you have any questions please don’t hesitate to contact the research team on familyresearch@warwick.ac.uk or call 02476 524139.

 

Angelicus Celtis Wow Britain’s Got Talent Judges

Angelicus Celtis during one of their shows

Angelicus Celtis during one of their shows

Our Ambassadors Angelicus Celtis wowed audiences on Saturday’s Britain’s Got Talent with their stunning rendition of Nessun Dorma.

Angelicus Celtis are avid supporters of Cerebra and are always eager to be involved with the local community. They recently held a successful “Sing and Play” event where they invited our families to come along for a morning of singing and fun.

They have also raised money for Cerebra through several of their concerts and supported us at several major events.

The choir is made up of a group of school girls from Llanelli and entered the competition determined to try and win for their hero teacher Mr Williams, who was recently in a car accident. Mr Williams and his wife came up with the idea of forming Angelicus from the ranks of the Hywel Girls’ Choir & Hywel Boy Singers.

They have done Mr Williams proud so far but now they need your help! They need your support to help them win Britain’s Got Talent! Every vote counts and will help them get to the final. It’s really easy to vote, all you have to do is download the Britain’s Got Talent app for your smartphone or tablet and follow the instructions when voting opens during the live shows.

 

 

 

 

 

 

Let’s get them to the final!

Watch their emotional first audition:

 

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Leah Makes Sense of Her World

The whole family!

The whole family!

“Leah turned 5 in February and she has a diagnosis of severe global development delay, vision impairment, hypermobile joints and autistic features. When Leah learned to walk just before she turned 4, it was a magical moment for us.

Leah lives with me (mum- Michelle), Dad (Mike) and brother Ashton. I’m not going to lie, life is hard and we live on a emotional roller coaster that has, at times, really tested us.  Leah is our world and she has changed our life and made us better people, but having a child with additional needs is challenging in so many ways. It makes every aspect of family life harder.

Leah has no sense of danger, you could say she’s on a level with a 9 month/1 year old’s understanding and is into exploring the world. But as she is 5 years old and growing fast, it can be very challenging.

Where do I start trying to describe our beautiful girl who is a mystery to so many? You really have to step into Leah’s world to work it out! Anything sensory, music, eating, water, light up balls and throwing things and exploring are the things Leah loves to do. Leah has no play skills other than playing catch with us but even then she will throw the ball away from us – normally into a narrow corner somewhere that we can’t get to! Leah is non verbal and as yet we haven’t been able to find anyway to communicate. She is good at taking your hand though and leading you to where she would like to go.

Leah attends a amazing school in Poole. They have really helped us, along with other professionals, to understand her world. We have become experts in learning through the senses!

Michelle and Leah

Michelle and Leah

Leah is our beautiful girl who has shown us how to parent in a different way. Our son Ashton is fantastic with his sister and we are so proud of him. Sadly lots of times we can’t always be the parents he deserves and that makes us sad.

Leah often gets frustrated with not being able to communicate but has learnt that if she pinches us she gets a reaction so unfortunately we get a lot of this at present. Screaming is another behaviour she has adopted.

I have had some fantastic support from friends and family but sometimes life can be isolating as taking Leah to peoples houses and going out can be so challenging. It’s hard not think ahead and how much harder life will be so we try so we just try and stay in the  present.

We are currently trying to get support from social care to see if we can get some respite. It’s not something I thought we would never do but we need to be strong to care for Leah and getting some days to recharge are what we sadly need. Unfortunately I think it’s going to be hard as so many cuts have been made.

We are in the process of adapting our house. Leah can’t get up and down stairs and all the lifting has given me a bad back. We are also putting gates in place to block off kitchen as Leah’s exploring just isn’t the safe in kitchen.

Overall we are happy, apart from some days (we all have them). Leah has taught us all to look at life very differently and become more understanding people. Leah has developed more than I ever thought she would and we pray she will continue to improve”.

Written by Michelle, Leah’s Mum.

Michelle recently attended one of our advice clinics run by Regional Officer Lilly Fahey. We hold lots of information and advice events throughout the year. Keep an eye on our What’s On page for the latest events in your area.

Sleep Walking to Success

The walkers before they set of

The walkers before they set off

On Saturday 6th May we held our second walk to the top of Pen-y-Fan in the Brecon Beacons to raise vital funds for our Sleep Service.

Following a safety briefing from the fabulous mountain rescue team, our brave walkers grabbed a glow stick each and, with an overwhelming sense of camaraderie, made their way to the summit!

This year, we were also joined by the Côr CF1 choir who not only braved the walk to the top of Pen-y-Fan but then entertained everyone with a few songs at the top. They were in fine voice, even after the trek up the mountain!

So far, this year’s Sleep Walk has raised well over £3000 and this will help fund our Sleep Service which aims to help families with children with brain conditions get a good night’s sleep.

We would like to say a big thank you to everyone who took part in the walk and for joining us on our journey to help families discover a better life together.

Book Review: Parenting your disabled child

Our librarian Jan reviews a new book you can borrow from our free postal lending library.

‘Parenting Your Disabled Child: the first three years’

by Margaret Barrett
ISBN 9781847094513
£9.99

If you have only just found out your baby is disabled or you know you are going to give birth to a disabled child, this is a lovely book written in a lovely gentle style that will guide you through the emotions you are likely to feel, suggest coping strategies and offer you suggestions for bringing out the best in your child.

I particularly liked the quotes from parents’ describing the emotions they felt on finding out their child had a disability. They will definitely make you feel you are not alone. The chapter on coping strategies will help you help yourself as a carer.

The largest section of the book looks at areas of child development in the early years from encouraging social development to practical issues like toilet training. It focuses on ways to provide your child with every opportunity for stimulation and interaction, so that you can make sure they have the best start in life.

To borrow this book and for more information about our library please email janetp@cerebra.org.uk.

An End to Sleepless Nights

Our Sleep Service gives support to families when their child is having sleep difficulties. Sleep Practitioner Catherine Stone recently helped a family experiencing sleepless nights and mum told us  how Catherine’s support had helped them.

“Thanks for helping us to get our 5 year old son back into a good sleeping pattern.

M has Tuberous Sclerosis with Epilepsy and Autism. He was always a great sleeper until his epilepsy medication stopped him sleeping. He began waking several times at night and wouldn’t go to bed. Catherine gave us advice and support and kept in touch until we had him sleeping peacefully again. Then we moved house and M began having the same problems again!

Catherine came to see us again with more advice and support and M is now thankfully sleeping well again from 8pm to 7am. What was helpful along with the advice and support was Catherine’s belief that our child could sleep well, that we didn’t have to accept the sleepless nights. Many parents think it is hopeless and accept it. But I can handle the challenging behaviour so much better if I’ve slept well and M needs to sleep too, his behaviour is better if he is well rested”.

Catherine explains “M’s difficulty settling and night waking was having a big impact on mum and dad and on family life. M’s problems re-occurred when the family moved house so we looked at trying to get M’s bedroom similar to his old one. We also developed a routine to gradually remove mum and dad out of the bedroom.”

If you would like some help from our Sleep Service you can find out more here.

Help with night waking

Mum Tammy was struggling to cope with her daughter’s night waking. Our Sleep Practitioner Claire Varey describes how she gave them some practical advice and support and Tammy explains the impact this has had for her family.

 

“I first had contact with Tammy back in July 2016. Tammy had completed one of our sleep questionnaires and a sleep diary which gave some basic information about her daughter’s sleep habits. I arranged telephone support for Tammy and we discussed the issues that her daughter, Amelia, who was 4 at the time, had with sleep.

Amelia has Autism and likes the things she likes, but it can be very difficult to get her to engage in any activities or interests if she doesn’t want to. There had been some progress, but Tammy was finding it difficult with the late nights, spending a long time settling Amelia and the continued night waking episodes. Amelia was also having day time naps and was quite reliant on her tablet.

We discussed how these things may be impacting on her and agreed some changes to their routine that may help with settling at night – and hopefully over time improve Amelia’s night waking. We identified that having a bath as part of Amelia’s bed time routine may be stimulating her and so I suggested moving it to earlier in the evening. I felt it would also help to introduce some calming activities, supper and massage before bed.

For Amelia’s bedroom we spoke about using the relaxing scent of lavender to help Amelia associate her bed with being calm and sleep. Also the introduction of a red light would help her understand that it was time for sleep and, if she should wake at night, the red light and the scent of lavender, would help her understand that it was still time for sleep.

The other important factor to look at was the day time nap. We spoke about trying to reduce the length and time Amelia slept – this was especially important as Amelia would be starting full time school within the next 6 months.

We keep in touch via text and although progress has been up and down, there has been an overall positive improvement. Amelia is getting more sleep, she has dropped her day time nap, is settling well and has a better quality of sleep. This is also having a positive effect on her mood and concentration”.

Tammy told us the impact the support Claire has given her has had on her and Amelia:

“From my first telephone conversation with Claire I felt hugely positive about the task that lay ahead. The ultimate goal was to gain more sleep for Amelia and ourselves but for now any step no matter how small would make a huge difference.  Understanding the basics of how sleep works was a massive eye opener. It was really interesting and helped answer some questions I didn’t really know I had until Claire explained sleep patterns to me.

At the end of our first phone call I was yawning my head off so knew I was onto something good.

With Claire’s help we managed to identify that a bath actually stimulates Amelia’s body and so has the reverse effect. Claire advised me to do something with Amelia to get rid of excessive energy for 10 minutes; to use lavender in the bath with some in her room, delta wave music and a red light in Amelia’s bedroom. I felt that the light and the music didn’t do very much but the lavender helped a lot. Very quickly I noticed the time it took Amelia to switch off went from between one to two hours to between 5 and 35 minutes.

When we first started our journey Amelia was having naps after school so Claire explained about not letting it go past an hour, which we didn’t always do especially if Amelia wasn’t right in herself. Since actively encouraging less naps Amelia’s body has naturally adjusted and she now has no naps in the day.

Claire is amazing she listens and is genuinely interested. She regularly checks how we are doing and even though we have never met she has been a fairy godmother for us. Claire is happy to go with what worked for us, never stressing that we shouldn’t be in bed with Amelia which we still are and allowing us to set our own goals.

In the past few weeks Amelia has started going to school until the end of the day and is now in bed between 8pm and 10pm. She still stirs in the night but isn’t awake as often as she was before.

Amelia seems to be learning more and I am sure a lot of this is down to her brain not being as tired”.

If you’d like some help from our Sleep Service you can find our more here.

The Effect of Delay in Autism Diagnosis

We’ve been asking parents to share their experiences with obtaining an Autism diagnosis for their child and the effects that delay can have.
In this article one family tell us their experiences.
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“Our daughter never slept easily. Midwives, health visitors, GPs, all offered advice and we tried everything. Our health visitor finally advised me to have one night a week in a hotel to save myself. Our daughter was apparently thriving, despite the lack of sleep, and no one had any other suggestions or reasons why.

Going into toddlerhood, cuddles were hated, eye contact wasn’t comfortable and things had to be a set way, e.g. the right plate, fork and spoon, sandwiches cut neatly into squares and on the plate in a specific pattern. However, speech was well developed, she practically taught herself to read fluently by age 2 and a half, and she could identify and add numbers ridiculously early. The nursery school were astounded and heralded her as a genius – so what that she preferred adult company and had some quirks? By this time her younger brother had arrived and he did elicit a closer relationship, rough and tumble, eye contact, etc. We didn’t worry.

In the first year of primary we noticed an increase in tics and obsessive behaviour. We mentioned autism, but the class teacher asked “why label?” and we decided to watch and wait. The teacher was particularly good at explaining why rules existed, why, in an emergency; our daughter couldn’t do her buttons up in a set order and take her time in the way she liked. Our daughter apparently thrived, becoming sociable and less obsessive. It was a classroom environment and teaching style that suited her – had it been different, we might have seen problems earlier, who knows?

As primary progressed we saw increasing abdominal pains, later diagnosed as infant migraine. We now know it was likely due to the level of stress she was carrying. Academic progress was exceptional until the junior classes, when she seemed to stall. It was put down to focusing on social interaction, later to laziness – always the argument was that she was a high achiever, she’d catch up easily when needed, she was already so far ahead it wasn’t important. Writing became a problem and we (at home, via support lines, and Google) diagnosed dysgraphia. This seemed to explain a number of ‘symptoms’ we’d seen and we dropped all thoughts of autism. We requested intervention from the school SendCo – it was by this time her final year at primary and her class teacher firmly believed her attitude was the only problem. The SendCo never observed, never assessed.

Our daughter chose a secondary school where few of her friends were going – she wanted a new start. The first year was wonderful: top classes, after school clubs, positions of responsibility. In Year 8 a number of things happened. Puberty hit and her body began changing in ways she was uncomfortable with, GCSE options had to be made and teachers were constantly pushing for ‘future plans’ to be made, peers were starting to form relationships, to talk about who they wanted to go to the Year 11 prom with and who they wanted to marry. At the same time, her brother fell ill with ME/CFS and so she lost her closest playmate and, as we now realise, social support.

The lack of sleep began to catch up – she had only ever managed 6-7 hours a night, although now older she would rest quietly and not disturb us. We contacted the school regularly with niggles – she’s exhausted today, she has a migraine today, she doesn’t understand what the teacher said, another child has been teasing her, and so on. The GP advised us to stick to waking her at 7am – on no account to ‘give in’, as this stage is just normal teenage stuff. By Year 9, grades had plummeted and after school activities diminished. Following a viral infection that seemed to be the straw that broke her, she was attending school only in the afternoons and we were receiving letters threatening court action. We asked repeatedly for a referral to the ASD team locally – the GP argued it was the school’s responsibility, they argued it should be the GP. We spoke to organisation after organisation, trying to join the dots.

We concluded she has high functioning autism, she has learnt to cover this, but has become utterly exhausted and unable to function fully. The school made the referral. Weeks later we have received a letter advising us it doesn’t give enough information to earn an assessment and we have now submitted our own evidence. We are told the wait, if granted an assessment, will be over a year – by which time she will be over 16 and will have left school, and will have to be re-referred to an adult team. In the meantime, the school are trying – but staff still ask her ‘when do you think you’ll be better?’ and her Autism Champion mentor forgets to turn up for appointments. The belief is that she is coping well – staff don’t see the fall out, or appreciate that her ‘good’ behaviour is just trying to fit in, and carries huge cost.

Interestingly, I recently bumped into some staff members from her primary school. I told them we were waiting for an ASD assessment. No one was surprised and all nodded and said it had always been pretty obvious. The huge question then is, why, oh why didn’t anyone mention it? The answer I suspect is that she was achieving educationally and behaving well, neither she nor I were making a nuisance of ourselves.

The current system encourages our children to make themselves ill, to fall seriously behind at school, to lose friendships, to take themselves to the brink before anyone helps. We have supported and protected our daughter, but in doing so we have continued the charade – allowed her to pretend at school and fall apart, unseen, at home”.

If this has struck a chord with you, we’d love to hear your story. Please get in touch with sarahj@cerebra.org.uk.