Building a better bed time routine

Avleen

Recently we were contacted by Hardeep, whose daughter Avleen was not sleeping at all. This was having a huge impact on the whole family. Claire from our Sleep Service offered the family some guidance and now, just a few months later, Hardeep tells us about their journey.

My daughter Avleen was born prematurely at 28 weeks but is now five years-old. She was diagnosed with Autism in 2018 and this often causes sensory issues which can lead to meltdowns.

She had disturbed sleep until she was 3 years-old and then things started to get much worse. She wouldn’t nap at all through the day and even though she was exhausted, she would wake up through the night – sometimes hourly.

It inevitably started to affect her school work because she was so tired during the day that she couldn’t concentrate and would act out.

Things came to a head when I was pregnant and had my second child. Avleen was waking up through the night and wasn’t able to settle herself. Once her sister Harneez was born, the crying of the baby in the night would also affect Avleen. It was taking a huge toll on the whole family.

We saw a paediatrician who suggested that we try melatonin but I was hesitant to try this as a first step. They also suggested that we get in touch with the sleep team at Cerebra for some advice and support.

We were put in touch with Claire who listened to what was going on and asked lots of questions to help her to understand our situation. We worked together to put a plan in place to improve Avleen’s sleep.

Claire suggested that we avoid giving Avleen a bottle before bed but rather give her a small snack if she was hungry. We were also advised to switch screens off at 7 to allow her to start winding down before sleep.

We started to give her a bath as part of her evening routine and this allowed Avleen to start to recognise for herself when it was nearly bed time.

Claire was in frequent contact during this time and for every issue that we had surrounding sleep, she was looking for a reason why it would be happening so that we could adjust Avleen’s routine accordingly.

After completing every step of the routine, we were finally able to bring Avleen’s bedtime forward to 9pm. She started to go to bed much more relaxed and as a result, was finally able to sleep through the night without any episodes of waking.

Once her sleep started to improve we even realised that part of the problem previously had been that she had been extremely restless in her sleep and her hair was getting tangled. This was causing her sensory issues and was leading to meltdowns.

Before we worked with Claire, Avleen was anxious about everything, especially at night. Now her behaviour is much better because she is much more well rested. She even recognises when it is time to go to bed and asks to go to bed herself – something that would have never happened before.

The only time that she wakes during the night now is if she has a cold or is suffering with hay fever. This obviously disturbs her sleep but is understandable.

She will sleep for 10 hours now which is amazing and it has had a hugely positive effect on her behaviour.

She is now able to concentrate much more at school and we have noticed that her asthma is much more under control.

It’s not just had a positive effect on Avleen but has also made things better for the entire family. I have gained so much confidence with the help of Claire and now I know that I’m not going to have any issues getting her to sleep. We’re all far more rested and this has meant that we are able to cope with everyday life much more easily.

If you would like to find out more about our Sleep Service, including how you can get help from one of our Sleep Practitioners, check out our website.

Direct payments don’t work for everyone

Direct payments

Our Legal Entitlements and Problem-Solving (LEAP) Project has just published a report studying the experience of families with disabled children and Direct Payments[1].

The research consisted of two parts:

  • We developed and circulated a Survey Monkey questionnaire in early 2018. It asked families about payment rates for personal assistants (PAs) [2] as well as their experiences of using Direct Payments. The survey attracted a total of 256 responses.
  • Students at Leeds University, under the supervision of Professor Luke Clements, carried out a survey of English local authority hourly rates for Direct Payments. Freedom of Information requests were made to 60 social services departments resulting in 49 usable responses.

A number of respondents clearly found Direct Payments to be a very positive experience. One stating:

DP is a lifeline I don’t know how we would have managed without it in the past 10 years. It is flexible & most definitely the way forward. I would recommend it 100% [as] it gives not only us a break but my daughter time away from us. It also allows us time with other family members without having to deal with our daughters complex needs an extremely vital resource. Long may it continue.

However, a majority reported significant problems with receiving Direct Payments. Some using the phrase ‘complete nightmare’ to summarise the difficulties they had encountered and others spoke of having to ‘fight’ and ‘battle’ to get enough help. One respondent reported:

At the moment it would seem the whole system is collapsing from health, education and social services. I just keep getting told there is nothing else they can offer me, and there are no funds to help us. The social services won’t even let me have a carer’s assessment or child in need assessment. [The] services are a disgrace at the moment.

Respondents to the family survey reported an average hourly Direct Payment rate of £8.90 gross while the local authority survey gave a higher average figure of £10.57 gross.

The report highlights the following key points:

  1. The survey reveals deep levels of dissatisfaction with the way that Direct Payment arrangements are been administered by local authorities.
  2. Rates of pay for Personal Assistants (PAs) were very low, typically at minimum wage rates. It appears that in consequence that in many local authority areas there is a serious ‘market failure’ – such that authorities are arguably in breach of their statutory and public law obligations to families with disabled children.
  3. Getting an assessment of needs was often said to be a matter of chance, with some families learning about services through word of mouth and some reporting a wait of as long as two years to get an assessment.
  4. Many respondents commented that Direct Payment rates were too low to employ suitable PAs despite their local authority being willing to pay much higher rates for agency staff.
  5. The difficulty of finding suitable staff who were prepared to work for the rates imposed by local authorities was a major and reoccurring theme of the survey as was fear by respondents of losing the Direct Payments if they were not able to find such staff.
  6. The complexity of some children’s support requirements, in conjunction with poor conditions of employment, meant that many families reported finding it impossible to recruit PAs. In conjunction with increased restrictions on the permitted use of money, this could result in money being unspent.
  7. Money that remained unspent was usually reclaimed by local authorities after periods of time that ranged from two weeks to two years, leaving families without any support. There was only one report (from 256 replies) of pay rates being increased in order to promote recruitment of a PA.
  8. There was a lack of knowledge (amongst families) as to how Direct Payments were calculated and indeed what the actual rate was in individual cases.
  9. There are considerable shortcomings in realising the original intentions behind Direct Payments. Strict rationing of resources is resulting in families experiencing stress, an acute lack of support and prolonged ‘battles’ to secure basic services that they are entitled to by law.

The report finds that ‘the research discloses deep levels of dissatisfaction with the way that Direct Payment arrangements are administered by local authorities’.

The whole report can be seen here by clicking on ‘Direct Payment Research’ .


[1] Direct Payments are moneys given directly to parents (in this case) by their local authority so that they can buy services themselves for their disabled child rather than having them arranged by the local authority.

[2] Personal Assistants are employed by families to provide services to their children (e.g. take them to community activities) and are paid using the Direct Payments they receive.

Handy tips for summer holiday sleep

older boy asleep

During the summer holidays the change in routine and light, warmer nights can often make sleep difficult. It can be even harder for children who don’t sleep well anyway. Our sleep team give their top tips for getting a good night’s sleep this summer.

  • Keep the bedroom as dark as possible at bedtime. Well-fitted blackout blinds can be useful. This allows our natural melatonin to be produced.
  • In hot weather, during the day keep windows shut and curtains closed to keep rooms cooler. Open the window in the evening if you like, when there may be a little breeze.
  • Look at using cooling pads/cooling pillows if their room is very warm.
  • Avoid caffeine (e.g. Coffee, some fizzy drinks, chocolate etc) in the 6 hours before bedtime.
  • Try and keep bed and wake times consistent, eating at similar times also helps with our internal body clock.
  • Avoid exercise in the hours before bed – this raises our body temperature, which can make it harder to fall asleep.
  • Using visual resources can help with changes to routine (visual timetables, social stories, checklists etc).
  • Use a fan to help keep bedrooms cool – the white noise it produces can also be quite calming.
  • Spend an hour before bed engaging in calming/relaxing activities (if you are away take some with you).
  • If bedtime during holidays is significantly later than during school, spend the last week of the holidays slowly bringing this earlier by 15 minutes a night. This is much easier on our body clock than a big change in one night.
  • Run cold water over wrists and feet before bed to help keep cool, or have a bath before bed as this helps to cool the body. Try to avoid very cold showers as these can be stimulating.
  • Play calming music/white noise at bedtime and throughout the night to drown out the noise of others playing outside.

You can find more information in our sleep resources. If you would like to find out more about our Sleep Service and how you can get more help and advice with your child’s sleep, please visit our website.

Carmarthen Mayor opens our new offices

Chris Jones, the Mayor of Carmarthen, George and Alfie at the new offices

Carmarthen Mayor Cllr Jeff Thomas visited on 24th July to open the charity’s new offices and draw the winning tickets in the Summer Raffle Draw.

Founded in 2001 and covering the whole of the UK, Cerebra has maintained its headquarters in Carmarthen. Cerebra moved to its new premises at the MacGregor Office Suite last month.

The event was a chance to celebrate the charity’s new headquarters as well as to hold their annual Summer Raffle Draw. The lucky prize winning tickets were drawn by Councillor Thomas.

Guests included local businesses, supporters of the charity and colleagues as well as some of the families that the charity support.

Chris Jones, CEO of Cerebra said: “We are excited to announce the opening of our new offices which marks an exciting new time for Cerebra. The new offices are also significantly cheaper to lease, saving the charity a substantial amount of money in rent and running costs”.

Cerebra is a charity that supports children with brain conditions and their families. Families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But Cerebra believes there is no challenge that can’t be overcome.

Our Innovation Centre help Harry to throw a ball for his dog

Harry and Addi

A team of Product Designers from the Cerebra Innovation Centre – a partnership between the University of Wales Trinity Saint David and Cerebra – has produced a specially adapted tennis ball shooter to enable a boy with cerebral palsy to throw a ball for his assistance dog.

Cerebra Innovation Centre, with help from ATiC – the University’s integrated research centre – developed the tennis ball shooter for Harry Flynn, 11, to help him bond with his dog Addi.

Eleven-year-old Harry has Athetoid Cerebral Palsy, which sadly means he has poor gross motor skills and is reliant on his wheelchair just to get around. Harry faces difficult challenges everyday but he’s able to live a happy life. He’s a budding musician and enjoys going to the cinema but when someone special came into his life two years ago, Harry soon had a new love. That someone was Addi, Harry’s assistance dog and best friend!

Addi, who came from the charity Dogs for Good, has been with Harry for two years. “He helps Harry by doing things like opening doors, opening drawers, turning light switches on and helping to remove socks and coats,” said Harry’s mum Hilary. “Most importantly he’s a constant friend and he encourages him to go outside, which, prior to having Addi, he never liked doing.

Addi’s a remarkable dog and a big part of Harry’s life. When he isn’t assisting, it’s important for Addi to have play time and they both love being outside together. Each time they were out on walks though, there was just something missing and Harry’s parents tried but couldn’t find the answer.

Harry and Addi

Harry’s mum, Hilary told us, “Harry so wanted to play fetch with Addi, who just loves to run after a ball. Sadly, though, Harry doesn’t have the strength or coordination to be able to throw. He loved being outside with Addi but you could see the disappointment on his face each time we went for a walk. I was so pleased, though, when I came across Cerebra and their wonderful Innovation Centre.”

The Cerebra Innovation Centre is home to a team of product designers and is based within UWTSD’s Swansea College of Art. The teams designs and builds innovative, bespoke products to help disabled children to discover the world around them. The products the team designs are desirable and exciting as well as functional, promoting social inclusion and peer acceptance for the children they help.

The team took a Nerf tennis shooter as their starting point and adapted it with 3D printed parts. Dr Ross Head of Cerebra Innovation Centre said he was pleased the team could create a piece of equipment that enabled Harry to reward Addi for his hard work.

“All Harry wants to be able to do is reciprocate and the only way he can do that is to throw a ball for his dog – but he doesn’t have the strength,” he said. “We were able to work with ATiC to get some really cool 3D printing done and create pieces that mean Harry doesn’t need dexterity to be able to pull a trigger.”

The team designed a bracket that could support the launcher and sit nicely on Harry’s wheelchair frame – not only that but the launcher’s firing mechanism had to be altered, so that all Harry had to do was lightly press it to release the ball.

Once the bracket was in place there was just one more surprise in store… putting Harry at the controls! While he could fire the launcher with no problem, Harry had to move his wheelchair each time he wanted to aim. The wheelchair had joystick controls so the team also added joystick controls to the launcher. Harry is now able to enjoy play time with Addi, repaying him for the assistance he gives on a daily basis. “He’s been a real help in my life,” said Harry.

The Innovation Centre is part of Cerebra, a charity supporting families who have a child with a brain condition, worked with ATiC, an integrated research centre at the university, to design and 3D print parts that make it possible for Harry to fire the shooter, and a joystick that enables him to point and aim the shooter.

Watch Harry and Addi in action:

Summer reading from our library

Summer reading

Why not take a fresh look at what we have to offer in the library.  We have heart-warming true life stories, best sellers or if you want something a bit more lighthearted we have that too.

Here are a few suggestions

book cover - The Spark

L6480 – The Spark
by Kristine Barnett
A mother’s story of nurturing genius of her son with autism

L6654 Toast: autism in the early years
by Alice Boardman
This is not a textbook, this is real life

L6728 Toby and Sox:
the heart-warming tale of a little boy with autism and a dog in a million
by Vikky Turner

L6816 – The Reason I Jump
by Naoki Higashida
A Bestseller – One boy’s voice from the silence of autism

L6519 – Mindfulness: a practical guide to finding peace in a frantic world
by Mark Williams
A life-changing bestseller including a CD of guided meditations

L6579 – A Different Kettle of Fish
by Michael Bartob
A day in the life of a physics student with autism

C0296 – Inside Aspergers Looking Out
by Kathy Hoopman

For enquires about the library please go to the library page or email Jan the librarian on [email protected]

New books in the library

Check out the new books we have in our library.

If you are not already a member you can borrow books from us to help you support your child. It is all free of charge. To join, fill in the application form on the library page.

Autism

Why Does Chris Do That? By Tony Attwood 2003 edition (L6768)

book cover - ten things every child with autism wishes you knew

Ten Things Every Child with Autism Wishes You Knew 2012 edition (L6813)

Aspergers’

book cover - The girl with the curly hair puberty

The Girl with the Curly Hair Asperger’s Syndrome and Puberty by Alis Rowe (L6791)

book cover - The girl with the curly hair siblings

The Girl with the Curly Hair Asperger’s Syndrome: Helping Siblings by Alis Rowe (L6792)

Communication

book cover - eye can write

Eye Can Write: a memoir of a child’s silent soul emerging by Jonathan Bryan (L6772)

book cover - Integrated intensive interaction

Integrating Intensive Interaction: developing communication practice in services for children and adults with severe learning difficulties, PMLD and autism by Amandine Mouriere (L6794)

Education for Special Needs

book cover - very special maths

Very Special Maths: developing thinking and maths skills for pupils with severe or complex learning difficulties by Les Stoves (L6795)

book cover - don't send him in tomorrow

Don’t Send Him in Tomorrow: shining a light on the marginalised disenfranchised and forgotten children of today’s schools by Jarlath O’Brien (L6800)

Mental Health

book cover CBT toolbox

CBT Toolbox for Children & Adolescents by Lisa Weed Phifer (L6802)

book cover - Child and Adolescent Mental health

Child and Adolescent Mental Health for Front-line Professionals by Nisha Dogra 2018 edition (6801)

Children’s Books

book cover - dude I'm an aspie

Dude, I’m an Aspie Kid’s Edition by Matt Friedman – the kids edition explaining Aspergers in cartoons from the blogger Matt Friedman

book cover - Siblings AS through our eyes

Siblings: the autism spectrum through our eyes by Jane Johnson – children and adults talk about what its like to grow up with a brother or sister with autism

book cover - Songames sensory processing

Songames for Sensory Processing by Aubrey Lande – games to play along with music, CDs included

For a full list of our library books please take a look at our library catalogues.

Jan Pugh
Librarian
[email protected]

A helmet for Imogen

The team at our Innovation Centre are hard at work making a new riding hat for Imogen.

Imogen loves horse riding and is taking part in the qualifying round of the RDA dressage event. There’s only one problem: her helmet. In order to get it to fit the depth of her head (so it doesn’t fall over her eyes), it is really tight around her head. This leads to discomfort and pain when riding for long times.

The new helmet being developed by CIC and UWTSD has been made to measure by using high tech equipment to scan her head shape and then design the helmet around her. They’ve already made a prototype and have been to visit Imogen to try it out to see if it fits.

The final production unit is being manufactured this week, so we hope that Imogen will be riding safely and in maximum comfort very soon!

Have you got a problem our Innovation Centre can help with? Get in touch using our contact form.

School, bullying and mental health

School. Some of us fondly remember our days in school as ‘some of the best days of our lives’.

School is an important step in all children’s lives and is where most of us spend a significant amount of time throughout our childhood and adolescence. It is a place where we are taught academic skills which can help us achieve and pursue the careers we choose for ourselves later in life. It is also a place where we are encouraged to step outside of our social comfort zone and to socialise with other children and adults outside of our immediate family.

Whilst some people would agree their memories of school are positive, others will remember school as a daily challenge to conquer. The demands put on children when they go to school, whether that be academically or socially are significant. The pressures on students to achieve the highest grades seem to be evermore increasing and throughout life in school, children must continually negotiate their social environment to ‘fit in’ with their peers to make and sustain friendships.

Academic attainment and peer acceptance are both challenges that all children face during their time at school, however school can be a particularly demanding place for children with genomic disorders.

Genomic disorders, such as 22q11.2 deletion syndrome, are caused by changes in a person’s chromosome (their DNA). Genomic disorders are commonly associated with complex physical, developmental and psychiatric problems. Therefore, many children with these conditions present differently to their peers in physical appearance, social skills and their educational and mental health needs.

As such, children with these conditions may be perceived as different from the rest of their peers and may often become ‘easy targets’ of bullying. Additionally, some parents report that their child’s schools do not have the resources or expertise in their child’s condition to accommodate their child’s needs. An unsuitable school environment and bullying are both factors which can contribute to a child’s adverse experience of school.

Adverse experiences in childhood, including bullying, are significantly associated with poor mental health outcomes. Research has also shown that certain genomic disorders increases the risk of developing mental health problems, such as anxiety, Autism Spectrum Disorder, attention-deficit/hyperactivity disorder and psychosis.

However, because not all children diagnosed with these genomic conditions develop mental health conditions, it is believed that both environmental and genetic factors contribute to the increased risk of poor mental health in these children. Therefore, much about the environmental risk factors, including school experiences, that children with genomic conditions encounter remain to be explored in order to understand how mental health conditions develop in this group.

I have just started my PhD project at Cardiff University, in which I will be exploring school experiences of children diagnosed with certain rare genomic disorders to answer the question ‘do adverse school and bullying experiences of children with genomic disorders contribute to their increased risk of developing mental health problems?’

To answer this question, I will be exploring school and bullying experiences that children with genomic disorders encounter and then I will investigate if and how these experiences differ from the experiences of their peers. I will then look at the effect of these experiences on the mental health outcomes of children with genomic disorders.

To explore these areas, I would like to speak to children diagnosed with certain genomic conditions, as well as their parents and teachers to gather an understanding about their experiences of school. For this project to successfully address the areas of interest and concern of parents, I would like these conversations to explore topics and issues that children and parents feel it important to investigate.

Therefore, if you or your child has received a diagnosis of a rare genetic condition, and you have any thoughts about this research, comments for specific topics you think it would be important to investigate, or if you would simply like to share your child’s experiences of school, I would love to hear from you with your suggestions. Additionally, if you would like to get in contact to ask questions about the project, please do.

By understanding the risk factors associated with poor mental health outcomes in children with genomic disorders, we can inform intervention strategies to reduce these risks and ultimately improve children’s outcomes and quality of life.

Thank you for reading and I hope to hear from you!

Lowri

If you would like to get in contact with Lowri to hear about your experiences, please email [email protected].

(Some of the rare genetic conditions Lowri will be exploring for her PhD include: 1q21.1 deletion/duplication, 2p16.3 deletion (NRXN1), 3q29 deletion, 9q34.3 deletion (Kleefstra), 10q23 duplication, 15q11.2 deletion/duplication, 15q13.3 deletion/duplication, 16p11.2 deletion/duplication, 17q12 duplication, 22q11.2 deletion/duplication syndromes).

Accessing Public Services in Scotland Toolkit Workshop

mother and disabled daughter at an appointment

Scots law provides powerful rights to education and support from other services, but this alone isn’t enough. The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials.

To help parent/carers in Scotland we produced the Accessing Public Services in Scotland Toolkit which is packed full of useful information and resources to give parents, carers and professionals the skills and knowledge they need to advocate for themselves.

We are very grateful to the RS Macdonald Charitable Trust who have awarded us a grant to fund our Accessing Public Services in Scotland Toolkit Workshops. Their generous support means that we can provide our workshops free of charge and therefore help more parents and carers to access health, social care and education support services for their child, helping them to discover a better life together.

These free workshops are run by our trained facilitators who will help families get to grips with our toolkit by showing them how to adapt the solutions and templates to their own individual circumstances and so improve parent/carer’s knowledge and confidence to challenge the decisions made by public bodies about their child’s care. The workshops have also been accredited by the CPD Certification Service.

To date there have been 68 workshops delivered on the English/Welsh version of the toolkit and feedback includes:

‘The training was very useful and highlighted to me how much I roll over when asked. I now feel empowered to be able to get those things which my son needs.’

‘Having had a bad experience my confidence had been knocked but knowing my son’s rights and how to productively move forward has inspired me. Thank you.’  

If you are a Scottish parent/carer forum or work for an organisation who support families in Scotland and are interested in hosting a free workshop then please get in touch with [email protected]