Category Archives: Practical Help

Early Rising

Small girl waking her parents early in the morning.

Early rising is a common sleep problem

Our useful checklist gives tips for what you can do if your child is an early riser.
Early rising is a common sleep issue. Have you considered or are you already doing the following?

  • Is your child waking due to a noise?
  • Is the room dark? If not, do you have a black out blind?
  • Is your child going to bed at the same time every night?
  • Does your child have a way of knowing when it’s an acceptable time to get up? ( e.g. a clock of some kind)
  • If your child is over 3, have they stopped having naptime?
  • If your child is under 3, have you tried reducing naptime?
  • Are you unintentionally rewarding them when they get up early by letting them come into your bed or taking them downstairs?
  • Have you tried using a reward chart for your child staying in their room until an acceptable time?
  • Do you have anything in the child’s room that they can do quietly if there is no chance of them going back to sleep?
  • Have you minimised anything in the room that is noisy or overly stimulating for your child?
Download this checklist as a PDF

Cerebra’s sleep practitioners can advise on a range of sleep issues in children, such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety. Visit our sleep pages to find out more.

Books on sleep in our library

Dog with head resting on a book

Books on sleep

We have several books on sleep in our postal lending library. Below is a list.

For kids:

C0166 – What To Do When You Dread Your Bed

Advice for children with disabilities:

L1320 – Sleep Better: a guide to improving sleep for children with special needs
L6325 – Sleep Disturbances in Children and Adolescents with Disorders of Development
L6392 – Sleep Difficulties and the Autism Spectrum
L6367 – A Clinical Guide to Paediatric Sleep
General sleep advice for children:

L6315 and L6531 – Solving Children’s Sleep Problems: a step by step guide for patents
L6107 – The New Baby and Toddler Sleep Programme
L6324 – Teach Your Child to Sleep: solving sleep problems from newborn through childhood

Difficulty Sleeping Alone or Night Waking

Our useful checklist gives tips for what you can do it your child is finding it difficult tbig-yawno sleep alone or waking up in the night.

If your child is waking in the night or finding it difficult to sleep by themselves, have you considered or are you already doing the following?

  • Does your child have a comforter?
  • Have a picture of you near by?
  • Are you being consistent every night?
  • Is your child falling asleep without milk/a dummy/ a tv on?
  • Is the environment staying the same (e.g. if a light is on when they fall asleep, does it stay on throughout the night?
  • Using a reward scheme
  • The gradual withdrawal technique (slowly moving away form your child over a period of time)
  • Being a Robotic parent once the light goes out and avoiding interaction
  • Leaving a night light on
  • Leaving the bedroom door open slightly
  • Talking to your child about their fears ( not just before bedtime)
  • Is everyone that is involved in the bedtime routine doing the same thing?
  • Is your child in pain?
  • Is your child waking due to noise?
  • Is your child waking due to it being cold?

 Download this checklist as a PDF

Cerebra’s sleep practitioners can advise on a range of sleep issues in children, such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety. Visit our sleep pages to find out more.

Books in the Library for Older Kids

Library booksCerebra has a large selection of books in our postal lending library for children and their siblings to read to help them understand their disability. We list some of the more popular books.

Last month we are featuring books for younger children and this month we are featuring books for older children.

You can borrow the children’s books on behalf of your child, as with the sensory toys. Sorry, but children can’t be library members themselves.

The full list of children’s books in our library can be found on our library pages.

Disability info for older children:

C0091  Ten Things Every Child With Autism Wishes You Knew
C0149  A Book About What Autism Can Be Like
C0141  Do You Understand Me? My life my thoughts my autism spectrum disorder
C0193  Explaining Autism
C0093  Can I Tell You About Asperger Syndrome
C0178  Inside Aspergers Looking Out
C0147  All Cats Have Aspergers
C0181  What is it Like to Be Me? A book about a boy with Aspergers
C0206  The Asperkids Secret Book of Social Rules
C0084  How to be Yourself in a World That’s Different: an Aspergers study guide to adolescence
L6291  Freaks Geeks and Asperger Syndrome
C0191  Sensory Smarts (sensory processing disorder)
L6050  Touch and Go Joe: an adolescent’s experience of OCD
C0061  Jumping Johnny Get Back to Work (ADHD)
C0117  The Girls Guide to ADHD
C0216  Can I Tell You About ADHD
C0137  All About Brain Tumours
C0174  Can I Tell You About Epilepsy
C0194  Explaining Epilepsy
C0190  Tic Talk (tourettes)
C0214  Can I Tell You About Tourette Syndrome
C0195  Explaining Down Syndrome
C0196  Explaining Cerebral Palsy
C0215  Can I Tell You About Dyspraxia
C0180  Living With Disability (all aspects of life with a disability)
Growing up:

C0153  Personal Hygiene: what’s that got to do with me? (boys and girls)
L6323  Taking Care of Myself: a hygiene and puberty personal curriculum for young people with autism (boys and girls)
L6483  The Boys Guide to Growing Up: choices and changes during puberty
C0218  Girl Talk: a survival guide to growing up
Fiction for older kids:

C0158  Trueman Bradley Aspie Detective
C0182  The Curious Incident of the Dog in the Nighttime
C0082  Blue Bottle Mystery (an aspie novel)
C0085  Of Mice and Aliens (an aspie novel)
C0192  Rules (having a brother with autism)
Books for siblings:

C0068  Being the Other One
C0107  The Sibling Slam Book
C0135  I’m a Teenager Get me Out of Here
C0217  Everybody is Different: a book for young people who have brothers or sisters with autism
C0179  My Family is Different: a workbook for children with a brother or sister who has autism or Asperger Syndrome

Finding Local Information

We take a look at some good ways of finding information on services and support in your area.

One of the hit-and-miss aspects of finding information is knowing that something exists, in order to search it out.  It is possible to miss out, at least for a while, on services, opportunities, equipment etc. because their existence has not yet come to light.  This article points to sources of information that either list what is available or lead to contacts with local people who will know.

Finding public services

Many city, county and district councils split what they publish, between visitors’ and residents’ information. A family with a child who has additional needs might want to consult both kinds, whether that is just for a visit or to put things in place for a new situation / area; broadly speaking, for both leisure / local highlights / informal activities and statutory / community services. https://www.gov.uk/find-your-local-council will find the contact details for a local authority in a county or city, however it can be overlooked that there are different kinds of councils, and more than one may cover the same area.

Smaller town and parish councils can be a source of useful local knowledge. An example comparing the type of information available is Patchway Town Council, which exists within the South Gloucestershire unitary authority (“unitary” indicating that it functions as both a county and a district council). Local authority departments may go under different titles but will include children’s services with children’s social services, education, adult social services, housing, planning, Disabled Facilities Grants, discretionary grants, trading standards, transport and disabled vehicle parking among others.

The local authority will cover some community health-related services, but this side of things will be NHS-based or linked to the NHS in some way. For example, equipment services are likely to cross over between district nurses linked to GP surgeries, and social services (although if you are just visiting an area and need some temporary equipment, the local branch of the Red Cross might be the place to start.) To find local health services, NHS Choices, gives some details and links to parts of the UK from “other NHS sites” at the bottom of the page.

All or most of the above will be very familiar to people with some experience, but to those who are new to it, it can seem like a maze.

A few other links relating to public services:

Local Family Information Services, which provide a range of information on services available to parents, including parents of disabled children.

NHS Choices services search, to find local health-related services.

Transferring to new services, including records, can often be assisted by the services you are moving from. Capability Scotland publish a guide for people moving to there with a disabled child, some of which could also be useful in other parts of the UK. A quick reference to all your child’s needs and existing services (such as a Personal Portfolio) can be a useful tool.

Transport information can be found at: Traveline.

Finding charities and other support

Good starting-points to get the lie of the land, as it were, are libraries (and librarians) – nearby ones can be found by entering a postcode or location name at: http://www.findalibrary.org.uk/#Start.

Tourist Information Centres are listed at: http://www.information-britain.co.uk/tic.cfm (in Northern Ireland, Visitor Information Centres, http://www.discovernorthernireland.com/Visitor-Information-Centres-VICs–A2216).

Voluntary services organisations are likely to know what charities and informal groups are active in an area: in England, these are the Councils for Voluntary Service (CVS), listed at: http://www.navca.org.uk/directory/home.aspx. Wales has County Voluntary Councils, listed at: http://www.wcva.org.uk/members-partners/county-voluntary-councils. In Northern Ireland, the NICVA lists the organisations at: http://www.nicva.org/members_a-z, and in Scotland, many voluntary organisations are listed by area at: http://www.iscotland.co.uk/local/charities-and-voluntary-organisations/, and the umbrella body is the SCVO.

Another source of information about carers’ services and support groups in England, searching by town or postcode, links from http://www.nhs.uk/CarersDirect/guide/parent-carers/Pages/Parentsupportgroups.aspx.

For finding private services and suppliers: http://www.thephonebook.bt.com/publisha.content/en/index.publisha# (the listings here include youth organisations and some local support groups under “community groups”). This is not to overlook the other types of directory, yellow pages etc.

For regional and national groups, and wider organisations and services that include local activities; Netmums, contains discussions with people who have already been involved with some of them.

Local offices of national charities are good at knowing what else there is in an area, the characteristics and the contacts. Both local authorities and voluntary services are likely to list them, or it may be a case of looking at the website of the national charity concerned. For example, we have Cerebra regional family support workers around the UK.

A note about moving to a new area in the UK

There are broadly two types of people in this; those who like to research and get a good picture of a place and what is available, and those who would rather identify one key service provider for their child, or one relevant parents’ group, and find out from them what else there is when they get there. Most people who are interested to read this article on the Internet probably lean more towards the research approach, and it has to be said that at least some research is a good idea, not only in terms of looking up information, but also in terms of following up that information – remembering the salutary case of a family with a child whose educational needs were not being met well where they were living and consideration was being given to a specialist residential placement a long way from home. The family wanted their child to continue to live at home, so they uprooted everything else in order to move to a county where there was a day-school that, on paper, appeared to cater for the needs. However they did this without asking the school and, having arrived there, they found that the school did not agree. Another thing that can happen with local information – or any information – is that a facility may have changed since it was last put on to the Internet, even by an official source. I found out myself, recently, that this even extends to bus timetables, entailing a long wait at the bus stop.

If there is a choice about what area to move to, Neighbourhood statistics, and a school finder, which includes Ofsted reports etc., may be of interest.

The charity Shelter provides a basic reminder list of things to consider when moving home.

Other local intelligence

Grants from charitable trusts are often tied to what geographical area you live in, even sometimes covering a small area such as a village. You can search for these by postcode and/or other criteria at http://www.turn2us.org.uk/default.aspx.

Three 21st-century resources that are useful when you need to know about a local environment, either for a visit or to move to the area, are satellite imagery, online versions of local newspapers and local radio stations that provide online listening facilities. Streetview, Google Earth or a route-finder, for example, can give a view of an area or postcode that indicates whether there is a safe garden / park for a child to move about outside, how near a place is to facilities, what kinds of roads there are, and other things. The newspapers and radio stations will give some idea of the flavour of an area, what’s on, and probably some specific information as well.

Going abroad

The government publishes a series of “Living in” guides, covering a number of countries, containing essential local information for people planning to move abroad.

If you are looking for a particularly specialised or very specific service for a child within an area, Cerebra’s regional office or the national helpline can advise on further sources for that information.

Bedtime Resistance

father and sleeping babyIf you are having difficulty getting your child to settle at bedtime, our useful checklist may help.

Difficulty in getting your child to settle at bedtime or bedtime resistance is common. Have you considered, or are you already doing the following?

  • Turning the tv off an hour before bed?
  • Is the bed Comfortable?
  • Is the Temperature adequate? (advisable is 19 degrees)
  • Is the bedroom dark and if not, do you have a black out blind?
  • Do you have a set bedtime Routine that lasts between 30 minutes and an hour?
  • Are you starting your routine at the same time every night, including weekends?
  • Is your child going to bed at the same time every night, including weekends?
  • Is your child being woken up at the same time every morning, including weekends?
  • Is the bedroom minimal in terms of toys/other distraction?
  • Do you refrain from using the bedroom for punishment?
  • Does your child have a healthy snack before bed?
  • Does your child have a bath before bed? (If they find it calming)
  • Do you put your child to bed when there are signs of them being tired?
  • Are you keeping interaction with your child to a minimum once they go to bed?
  • Is your child getting enough exercise in the day?
  • Is your child eating healthily?
  • If your child becomes anxious or upset when brushing their teeth, have you tried doing it earlier in the bedtime routine?
  • Is your child having no caffeine near to bedtime?
  • Have you stopped or reduced naps, especially near to bedtime?
Download this checklist as a PDF

Cerebra’s sleep practitioners can advise on a range of sleep issues in children, such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety. Visit our sleep pages to find out more.

Books in the library especially for kids

kids-booksCerebra has a large selection of books in our postal lending library for children and their siblings to read to help them understand their disability.

Listed below are of some of the more popular books. This month we are featuring books for younger children and next month we will be featuring books for older children.

You can borrow the children’s books on behalf of your child, as with the sensory toys. Sorry, but children can’t be library members themselves.

The full list of children’s books in our library can be found at on our library pages.

Disability info for younger children:

C0111 – Looking After Louis (autism)
C0129 – Don’t Call Me Special (special needs)
C0134 – Do I Have to go to Hospital
C0136 – Victoria’s Day (Down Syndrome)
C0144 – My Friend Has Down Syndrome
C0161 – The Brave Soul’s Club (dealing with serious illness)
C0168 – Kevin Thinks (Aspergers)
C0210 – My Autism Book
Fiction for younger kids:

C0098 – Susan Laughs (being in a wheelchair)
C0040 – Andy and His Yellow Frisbee (autism)
C0058 – Spark’s Excellent Misadventures (adhd)
C0128 – Just Because (siblings)
C0150 – Ian’s Walk (autism)
C0156 – Sometimes (staying in hospital)
Signing, Makaton & PECS:

C0023 – Sign & Singalong Twinkle Twinkle Little Star
C0024 – Sign & Singalong Baa Baa Black Sheep
L6161 – Learn to Sign with Olli (BSL)
C0162 – My First Makaton Book of Colours
C0163 – My First Makaton Symbols and Signs – book 1
C0164 – My First Makaton Symbols and Signs – book 2
C0165 – My First Makaton Symbols and Signs – book 3
C0177 – My Makaton Book of Nursery Rhymes
AV6392 – Makaton Nursery Rhymes (dvd)
C0208 – PECS Cards Keyrings – Feelings and Emotions and Instructions and Behaviour
Activity books and CDs:

C0108 – The Animal Boogie (book and CD)
AV6520 – Motor Skill Activity Fun (CD)
AV6521 – Tuned in to Learning for Students with Multiple Disability (CD)
Sound books:

C0187 – What’s That Noise Spot
C0188 – Room on the Broom
Touchy Feely books:

C0185 – That’s Not My Mermaid
C0186 – That’s Not My Dragon
Behaviour:

C0157 – A Volcano in my Tummy (anger)
C0176 – The Red Beast (anger and Aspergers)
C0184 – Ellie Bean Drama Queen (sensory processing disorder)
C0151 – Don’t Behave Like You Live in a Cave
C0166 – What to do When you Dread your Bed (sleep)
C0211 – The Disappointment Dragon (Aspergers)
C0212 – The Panicosaurus (Aspergers)
Bereavement:

C0118 – The Lonely Tree
Books for siblings:

C0039 – My Brother Matthew (disability)
C0077 – My Brother is Different (autism)
C0160 – My Brother s Autistic
C0183 – Our Brother Has Down Syndrome
C0206 – Babies are Noisy (autism)
Next month… look out for our list of books for older children!

Our new Legal Entitlements Research co-ordinator

Carys Hughes, Co-ordinator for the Legal Entitlements Research Project, describes her role and explains how the Project may be able to help you.

I joined Cerebra on 7 April 2014 as the co-ordinator for the Legal Entitlements Research Project, which has been in operation since October 2013. Having qualified as a solicitor in private practice, I spent 11 years in a complaints-handling role in the public sector before joining Cerebra. I hope that my legal background, teamed with my experience in dealing with people’s concerns, will help me to contribute to the success of the Project.

The Project has evolved from a number of initiatives set up by Cerebra to inform parents of their legal rights. A series of popular Cerebra seminars, delivered by Professor Luke Clements of Cardiff University, gave rise to several ‘frequently asked questions’ and resulted in the publication of our Parent Guides, followed by a set of precedent letters which parents could adapt for their own use . Cerebra recognised that some parents might need additional support in order to access their legal rights and responded by establishing the Project, in conjunction with Cardiff University.

Law students at the University (under the supervision of qualified staff, firms of solicitors and other disability organisations) aim to provide legal support to families who are experiencing difficulties in accessing health and social care services. Part of my role as co-ordinator is to consider requests received from parents and refer appropriate cases to the University.

As well as providing practical assistance to families, the legal advice scheme also forms part of a wider research programme, under the direction of Professor Luke Clements as our Academic Chair. The research is aimed at improving our understanding of the difficulties faced by families in accessing support services and learning how these problems can be resolved effectively. Cases referred to the scheme will provide a valuable source of information to the research team at Cardiff about the type of problems encountered by families and the effectiveness of the scheme’s interventions.

The research team will also be developing a UK wide register of support resources, comprising information about advice and support agencies which could help families secure the support services they need.

Recent successes have already been reported (Oliver’s story and Jinny’s story) and we hope to publish many more success stories as the Project progresses. If you have a legal question about your child’s access to health or social care services, please have a look at our website for further details about the scheme and contact us at probono@cerebra.org.uk

Autism at school: seven questions for parents

autismatschools2We are pleased to share a short article written for parents by Prof Richard Hastings (Cerebra Chair of Family Research at Warwick University) about autism and school.

The article is an attempt by Richard to make more accessible the sorts of questions that are important when considering whether school based interventions/supports are suitable for children and young people with SEN, autism and intellectual disability.

Richard suggests that the questions parents should ask are:

  • What are the needs of my child and my family at this time?
  • How will the intervention suggested address these needs?
  • How is the intervention meant to work?
  • Has the intervention been fully described and written down?
  • Is there evidence the intervention is effective?
  • Is there any evidence the intervention is effective in the real world?
  • Will the school be able to show you whether the intervention is working for your child?

To read the article please click here.

We would add one further question to the seven suggested by Richard and that concerns information sharing and communication between the school and other agencies (health, social care) that may be involved in the child/young person’s overall support.  Its important that the overall package of support ‘fits’ together.  So parents need to question this and how communication between the school and these other agencies is going to be managed.

Additionally you might like to look at the ‘What’s the Evidence’ summaries written by another Cerebra centre, PenCRU, and also Cerebra’s Guide on Decision making, Confidentiality and Sharing Information. 

Another success for Legal Entitlements Project

Cerebra’s Legal Entitlements Research Project has provided advice on the reassessment of continence services for a little girl with cerebral palsy.

We were recently contacted by the mother of an eight year old girl, Jinny*, who has quadriplegic cerebral palsy. Jinny had previously been assessed as requiring five continence pads each day. Jinny’s mother, Mandy*, explained that she was concerned how the review of continence needs was being conducted.

A local NHS body had asked for Jinny’s continence needs to be reassessed, stipulating that this must take place over a three day period for fluid and a two week period for stools. Because the assessment had to be completed within four weeks, part of the assessment would have had to be undertaken while Jinny was at school. Mandy was worried about the assessment having to take place during term time. She was concerned that Jinny would be embarrassed and stigmatised if the assessment took place at school. In fact, she was considering withdrawing Jinny from school for two weeks in order to carry out the assessment at home.

Mandy was also worried because the NHS body wrote to her stating that if the reassessment was not undertaken within the specified timetable, there may be a delay in the delivery of continence products. Going further than this, an NHS employee told Mandy in a telephone conversation that if the assessment was not carried out in the stipulated time period, the continence supplies would be stopped. This was despite the fact that Jinny’s community nurse was willing to confirm that Jinny still needed the continence products.

After Mandy contacted Cerebra, a referral was made to the Cerebra Legal Entitlements Research Project at Cardiff Law School. Under this scheme, law students, under the supervision of academic staff and qualified solicitors, research relevant areas of the law and offer guidance for families who are not receiving their legal entitlements.

Mandy was advised that several legal issues had been identified. The main legal points were that:-

  • NHS bodies have a duty, under section 2 of the Health Act 2009, to take into account the individual needs of patients and to ensure that policies do not discriminate against patients, even inadvertently.
  • The National Institute for Health and Clinical Excellence (NICE) guidelines on paediatric continence services emphasise that treatment should be adapted to the needs and circumstances of children and their families; the views of children and their families should be taken into account; that continence problems can lead to bullying; and reducing unnecessary invasive examinations and procedures is a key clinical issue.
  • Department of Health good practice guidance advises that children should not be excluded from school activities due to incontinence and children’s dignity and independence should be protected through the implementation of appropriate systems of care which also avoid the risk of bullying.
  • Under the Equality Act 2010, it is unlawful discrimination to have a policy that disadvantages a disabled child and there is a duty to make reasonable adjustments for disabled people
  • Under the European Convention on Human Rights 1998, it is unlawful to fail to provide timely health support to a disabled child and to threaten its withdrawal.

Cardiff Law School sent its legal opinion to Mandy. This explained the legal points outlined above and highlighted that the way in which the NHS body had approached the review of Jinny’s continence services had fallen short of its public law obligations and that it had acted unreasonably. It also pointed out that it would be unlikely for the continence needs of an eight year old girl with quadriplegic cerebral palsy to diminish over time. The opinion concluded that:

“one would hope that the NHS body would undertake a fundamental review of the implementation of the policy and in the instant case demonstrate considerably greater flexibility (for example by allowing the assessment to be undertaken during the school holidays)”.

Mandy forwarded this opinion to the relevant NHS body. This clearly had an impact as she reported back that she was able to order the next supply of continence pads without the need for the assessment to take place during term time.

Can our Legal Entitlements Project help you? Find out more here.

* names have been changed.