Category Archives: Practical Help

Night Waking and Building a Better Bedtime Routine

James

James

James’ family were struggling with his bedtime routine and night waking. Our Sleep Practitioners, Pattie Everitt explains what sleep and advice she was able to give to help them tackle the problem.

Seven year old James has ASD and had great difficulty settling to sleep. He needed a parent with him until he fell asleep. He also woke in the night, went to his parent’s bed, and would then stay there for the rest of the night.  This would result in his dad moving to sleep on a mattress to be able to get more sleep.  The parents were finding this a great strain, as they did not have an evening together or a good night sleep.

Pattie explained that the waking in the night is something everyone does, normally without realising, but because James settled with a parent at bedtime, he would wake up, notice that they were not there, and then need their assistance to settle again.

The normal approach to this problem would be to reduce the contact gradually, by sitting a bit further away every few nights as the child is falling asleep and keep doing this until the parent is back downstairs.  Pattie advised the family to try this, along with keeping the wake times the same each day so that James would get into a more consistent sleep pattern.  A couple of months later, James’  mum replied with the following:

“Thank you for your response and advice. We have started the process of removing ourselves from James’ room at bedtime and he is now accepting us being out of the room – just outside. I suspect that the next step is to move further away which will then, as you say, reduce the nighttime anxiety, as he will get used to being on his own. We have also been sleeping with him during the night to keep him in his own bed and out of the habit of coming into our room.  We are now thinking about whether we can move out but looking at your advice, we would also have to do this slowly.

Thanks for the advice on consistent bedtimes/wake times. We have managed to get him to bed a bit earlier by creating a more consistent routine but it can still take him a long time to go to sleep. I suspect that might just be the autism and a need to wind down?  If we can get him to stay in his bed this, together with an earlier bedtime, is perhaps not so much of a problem.”

The parents persevered with the technique over the next few weeks, and also introduced one of their own:

“We have recently turned a corner with James’ sleeping with the use of a book on CD at bedtime.  We listen to the CD with him, following the book, and then we turn the lights out and leave it on repeat at a quiet volume. James has learnt that when the CD is on, it is time for bed and that he should stay there. Although he still takes a while to settle to sleep, with the help of the CD, he is staying in his room.  We leave the CD on very quietly through the night and he now stays in his bed.  This is a dramatic turn-around and I think this strategy has worked because it provides a clear structure/cue about what James should be doing, and the CD helps his anxiety about being on his own/going to sleep.”

According to Pattie, using sound such as a CD to help with sleep can be beneficial, but if used for settling at bedtime it is often best to keep it at a low level all night as James’ family did so that he is exposed to the same environment when he wakes in the night.  This can help the child fall asleep again on their own.

James’s mum was grateful for the support through the process:

“There is so little help out there for sleeping difficulties so your service is so valuable!“

You can find out more information about our Sleep Service 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.

Support for our Problem-Solving Toolkit Workshops

problem solving toolkitWe are very grateful to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation who have each awarded us a £5,000 grant to fund our Problem Solving Toolkit Workshops.

Their generous support means that we can 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.

Our Problem Solving Toolkit and Workshops are designed to help families access the services that their children need, and are entitled to. The Toolkit is a comprehensive, practical and easy to use guide, packed with useful advice, solutions and precedent letters. You can download the Toolkit here.

Problem Solving Toolkit Workshops

This year we have launched our Problem Solving Toolkit Workshops which use the information and resources in the Toolkit to give parents, carers and professionals the skills and knowledge they need to advocate for themselves. Each workshop lasts for 3-4 hours and includes a presentation, case studies for group work and a chance to discuss and share experiences. The workshops are free.

We’ve had some great feedback from parents and professionals who attended our initial workshop:

  • “A wonderful guide to help parents, thank you so much. It is a real maze and you have provided a crutch for parents to use”. (A parent)
  • “I will be recommending this resource to the families that I work with. It is wonderful”.  (A professional)

Thanks again to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation for their generous support.

Can’t find a riding helmet to fit your child?

We introduce the newest member of our Innovation Centre and would love to hear from you if your child would like to try horsey activities but you can’t find a helmet to fit.

New team member

Maria Kemys

Maria Kemeys

“Hi all, my name is Maria Kemeys. I am the newest member of the CIC team as their new Business Development Officer. I am a recent graduate with a Master’s in Business Administration and have a massive passion for working with a charity who contributes to changes that impact and better a child’s life. I am delighted to have been offered the position to work alongside the team in the Cerebra Innovation Centre where innovative and life changing work is being carried out every day to help children in unique situations. I am looking forward to working as part of the CIC to develop new and existing projects for families and children, helping to them to enjoy life together.

Can’t find a riding helmet to fit your child?

Tommy Lee wearing his helmet

Tommy Lee wearing his helmet

You may remember that in 2016 we were approached by a school on behalf of young man called Tommy Lee. Tommy Lee was unable to participate in their weekly horse riding sessions as the riding centre did not have a helmet that would fit Tommy Lee’s unique head shape.

Our Innovation Team worked hard to design and make a bespoke riding helmet that meant Tommy Lee could take part in riding lessons with his friends. The helmet was not only comfortable but safe and certified by the British Standard Institute (BSI).

Thanks to a donation from Mr and Mrs Coventry at Claire’s Project our team are now able to develop more of these equestrian helmets. So if your child loves horses and would love to try equestrian hobbies but can’t participate because of the standard helmet size,  then please get in touch to find out more.

You can contact the team on cic@cerebra.org.uk or call 01792 483688

Money Matters!

Little boy counting moneyHousehold income for families with a disabled child has been shown to be around 13% lower than for those with non-disabled children. At the same time they incur higher rates of expenditure associated with disability (1).

Our aim is to equip you with the knowledge, skills and confidence you need to manage your children’s finances. Here are some of the ways we can help:

DLA Guide

If you’ve ever tried to fill in a Disability Living Allowance (DLA) Claim Form you’ll  know what a huge and daunting task it can be. Our step-by-step guide to DLA aims to make it a bit easier. The guide takes you through each question on the DLA form, explaining what it means and giving advice on how to answer correctly. It also gives you advice about how to appeal if you are unhappy with the decision. You can download the guide free of charge from our website.

Money Matters

Our Money Matters Parent Guide outlines the arrangements you may need to put in place to manage your children’s finances from age 16 into adulthood. This guide provides a summary of this complicated area through a series of questions and answers. You can download the guide free of charge from our website.

We are certified by the Information Standard, a recognised mark of quality,  which means that all of our parent guides and fact-sheets are clear, accurate, evidence based, up to date and easy to read.  You can view the full range here.

Workshops

We hold Disability Living Allowance workshops around the UK where we help parents use our DLA Guide to complete the DLA form. The workshops are free for parents and carers and are held between 10am and 2pm to fit around school times.

We recently delivered a workshop to the Autism Puzzles parent group in Cardiff which parents found really useful. If any groups are interested in holding a workshop please get in touch with David Williams on davidw@cerebra.org.uk. All we ask is that the group provide a venue, a light lunch and promote the event. The target audience is 15-20 people.

Freecycle

Our Freecycle service  puts parents needing specialist equipment in touch with other parents who have good quality specialist equipment that is no longer needed. All equipment is offered free of charge. So if you have some equipment that your child has outgrown or no longer uses but still has plenty of life in it, our freecycle page can help it find a new home.

Wills and Trusts

We can support you to make provision for their child’s future by offering advice on making a will and setting up a discretionary trust. We also help families identify appropriate legal help for this.

Signposting

We are able to signpost you to other charities that offer services you might need, including grants for specialist equipment. Just give us a call on our freephone helpline, 0800 328 1159, to talk about your needs.

If you’d like more information on any of the above, please contact us on 0800 328 1159 or enquiries@cerebra.org.uk

References:

(1) Annual Report of the Chief Medical Officer 2012 – Our Children Deserve Better: Prevention Pays)

Legal Directory

LawAs a parent or carer of a disabled child you may need to seek legal help at some point. Identifying and approaching a solicitor for legal help can be a daunting prospect for families and your choice of solicitor can be critically important.

Our Guide to Finding and Assessing Sources of Legal Help is intended to help you with this process and we recommend you read this before contacting a solicitor.

Download Finding and Assessing Sources of Legal Help (PDF)

To assist your search we have developed a legal directory. While Cerebra cannot make recommendations, and is not responsible for the work of these firms, the firms listed are supporters of Cerebra insofar as they have shown an understanding of our ethos and have been financially generous to the charity in donating to us to support our work.

Complaints process

If for any reason you are not happy with the service that your solicitor is providing, please contact the firm directly through their own complaints management system. This information can be found on their website. If you are unhappy with the general quality of the service offered by a law firm, we suggest that you contact the Legal Services Ombudsman.

Scotland North East North West Midlands Wales />

East Anglia London South East South West  […]

Disabled Facilities Grants Project

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Joseph is one of the students working on our Legal Entitlements and Problem-Solving (LEaP) Project at the University of Leeds. In this article, Joseph tells us more about the students’ Disabled Facilities Grants project.

William (not his real name) is 14 years old and has autism. He’s a big, tall lad, who is much loved by his family.  William is non-verbal and has severely challenging behaviour. He has two younger sisters who are affected by his unpredictable, aggressive behaviour and their sleep is often disrupted when William is awake at night.  His family members say that they could cope if there were more space in their home – so that William could have a place to calm down on his own and the family could have some space and time to relax with friends.

Their house is small and they are unable to afford this building work: it would cost about £45,000 for a small extension to provide the necessary space for William (a bedroom and bathroom).  Without this adaptation work they will be unable to cope and the only alternative would be for the local council to provide residential full time care.  This would cost from £3,000 – £9,000 per week, amounting to significant costs over the course of a year. Moving to residential care would have a devastating impact on William and his family.

You might think that families should have easy access to help with adaptations of this kind – but the research being undertaken on behalf of Cerebra by students at the School of Law, University of Leeds, suggests that this is not the case.

The law entitles families to Disabled Facilities Grants (DFGs) for such work and the Government has significantly increased the allocation of these funds.  And yet some families experience great difficulty in obtaining support of this kind because councils (contrary to the law) are refusing to provide extensions for autistic children who don’t have any mobility problems.

The student researchers are working with a local disabled people’s organisation – the Access Committee for Leeds – to assess the cost effectiveness of DFGs provided to families with autistic children to cover the cost of providing home adaptations.  They are visiting and interviewing families who have had adaptations and families who are in desperate need of such grant support.  Their report will be published in February 2017.

For further information, contact Sorcha McCormack at S.M.McCormack1@leeds.ac.uk.

You can find further information about the Cerebra Disabled Facilities Grants Research Project  (DFG Project here).

Chakotay explores his world

Our grants scheme can help fund equipment and services to help make life a little bit easier and more enjoyable for children and families. The Greening family applied for funding to buy a Hippocampe All Terrain Beach Wheelchair to help their little boy explore his world:

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“Our little boy’s Hippocampe wheelchair came yesterday and was all set up ready for his maiden voyage this morning!

This chair is going to make such a big difference to our lives as we are surrounded by lovely beaches and fantastic woods, all which have been virtually inaccessible as he grew older and bigger and heavier – he is nearly 5 years old now. He was born blind with developmental delay and cannot talk. He also has low muscle tone and cannot walk and therefore has to be carried across the sand or woodland trails – not any more though!

chakotay collage

We took him down to the beach this morning, right up to the shore line where he sat listening to the waves and catching the wind, it was just perfect for him and he loved every minute, the smiles on his face telling you the whole story. He sat in the Hippocampe like a little king, he loves the arm rests and the feel of the big tyres.

We’ve also been to the woods. He loved the noise of the trees rustling and the stream running, as you can see he got so much out of it. This will open our adventurous side and get everyone out and about (not just me!). We also got my grandson Ethan in on the act by pulling the wheel chair on the special harness.

We know he will have so much fun in it all year round and for us , no more heavy lifting or dragging with wheel chairs or buggies.

We can not thank you and your amazing charity enough, this would not have been possible without you. We thank you from the bottom of our hearts”.

School Transport: A Guide for Parents in England

School Transport EnglandThis guide explains the legal duties on local authorities to provide free school transport for disabled children in England. Our aim is to help parents and carers understand their legal rights, but this guide is not intended to be legal advice and it should not be relied on as such. The law relating to school transport can be complicated and you may need to take independent legal advice to find out how the law applies to your particular circumstances.

This guide is one of a series of guides to be published by Cerebra that aim to give parents of children with disabilities and/or special needs information on how to get the help and support they need. You can download the guide below.

Download School Transport: A Guide for Parents in England PDF

First published 2016. This edition 2016. Review date 2019.

Two Cerebra Parent Guides Highly Commended by BMA

BMA AwardsTwo of our parent guides have been Highly Commended at the 2016 British Medical Association (BMA) Patient Information Awards. We were delighted to receive the awards for our Parent Guides on ‘Returning to School: A teacher’s guide for pupils with brain tumours, during and after treatment’ and ‘Anxiety: A Guide for Parents’ at a ceremony on 12th September.

We are determined to give every family that includes a child with a brain condition the chance to discover a better life together. By listening and working with families we are able to use that information to inspire the best research and innovation before helping them to put the knowledge into practice so that they can discover a better life together.

The British Medical Association’s Patient Information Awards were established to encourage excellence in the production and dissemination of accessible, well designed and clinically balanced patient information.

Tracy Elliott, Head of Research at Cerebra said: “Parents regularly tell us that they have difficulty in getting reliable information on their child’s condition, especially for those conditions that are less common. Providing clear accessible information that translates research into practical support and advice for parents is a priority for Cerebra. We are delighted to receive BMA recognition for our work”.

We produce a range of Parent Guides on a variety of topics which are available free of charge from our website. As a certified member of the Information Standard since 2013, parents and professionals can be confident that the health and social care information we produce is of the highest standard.

Returning to School Guide

The ‘Returning to School’ guide is intended to help teaching professionals, as well as hospital oncology paediatric departments and parents and carers, to support a pupil with a brain or spinal tumour who may be absent from school for some time, or may have sporadic attendance with a very serious illness. It explains what the pupil may be going through both medically and psychologically and offers practical strategies for ensuring supportive reintegration back to school. Suggestions are given for how teachers, assistants and SENCOs can provide sustained and targeted support for pupils who face extended treatments, devastating long term side effects or an uncertain future.

The full guide is supported by a Facstsheet pinpointing strategies to use where memory and cognition may be impaired, and two infographics on ‘What to do if a child is diagnosed with a brain tumour’ and ‘What to do if a pupil with a brain tumour becomes palliative and may die’.

A number of prominent health professionals from The Royal Marsden NHS Foundation Trust were involved in developing this resource, namely: Dr Lesley Edwards, Consultant Clinical Psychologist; Dr Lynley Marshall, Oak Foundation Consultant in Paediatric Oncology Drug Development; Gabriella Haeems, Assistant Psychologist. The resource was reviewed by Dr Susanna Waern, Principal Clinical Psychologist.

Anxiety Guide

Our ‘Anxiety: A Guide for Parents’ was developed to give up to date information on how to spot the signs of anxiety and anxiety disorders and examine what can be done. Part one describes the common signs of anxiety and specific anxiety disorders. Part two describes the ways professionals assess anxiety in children with intellectual disability, and part three gives guidance on helping your child reduce feelings of anxiety and gives some examples of specific disorders associated with anxiety.

The resource was written by Dr Jane Waite, Postdoctoral Research Fellow at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham; Dr Hayley Crawford, Research Associate at the Centre for Research in Psychology, Behaviour & Achievement at Coventry University; Rachel Royston, PhD student at the University of Birmingham. The guide was peer reviewed by Professor Chris Oliver of the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.


 

These publications will now be held by the BMA library and recommended for parents and professionals. Cerebra were one of the smallest charities recognised by the BMA in this way. Our publications will sit alongside resources developed by large well established charities such as Marie Curie, Macmillan Cancer Support, The Children’s Trust and The British Heart Foundation, as well as resources developed by various NHS Trusts. Our thanks go to everyone involved in these projects.

The full range of Cerebra guides can be downloaded free of charge from our website.