Category Archives: Information and Advice

Factsheet: What to do if your child isn’t getting the social care support s/he needs

The problem:

Families often contact our Legal Entitlements and Problem-Solving (LEaP) Project and tell us that they’ve been assessed by social services, but still aren’t getting the support they need. This factsheet explains what you can do if you’re in a similar situation, for example:

  • you disagree with an assessment that says that your family doesn’t need any extra support
  • the assessment and/or care plan don’t reflect the full extent of your child’s needs
  • the assessment says that your child needs support, but the council hasn’t written a care plan or put any support in place and things are ‘drifting’
  • you’ve been referred to one of the council’s ‘teams’ (e.g. Disabled Children’s Team), but the team says that your child doesn’t meet their ‘criteria’ for support
  • you’ve ‘bounced’ around the system between different teams without getting the support your family needs

The law:

After assessing your child’s needs, the council must then decide whether it’s necessary to provide support to meet those needs – many councils use ‘eligibility criteria’ to help them reach this decision.

In England, there are no national criteria for deciding whether a child is eligible for support and each council will have its own rules. In Wales, new national eligibility criteria have been introduced by the Social Services and Well-being (Wales) Act 2014. The following principles will apply in all cases, regardless of the eligibility criteria being used:

  • councils are entitled to prioritise the support they provide so that it goes to those in greater need – eligibility criteria can be a way of ensuring that the council is acting consistently. However, those criteria must be rational and fair
  • if your child and/or your family will be put at significant risk of harm if support is not provided, then that support must be made available
  • you’re entitled to see a copy of the eligibility criteria so that you can see how the council has reached its decision
  • councils should explain the reasons for their decisions

Eligibility criteria can seem very technical and confusing – it’s important to remember that they’re just a way of measuring the impact on your child of not getting support. The more serious the consequences to your family, the greater the council’s responsibility to provide support.

The support provided by the council must meet the need: this means that the services must be of sufficient quality, must match the needs of your child/your family and the staff must have the necessary skills and training etc.


The solution:

Ask yourself

  • “What will happen to me and my family if the council doesn’t provide any support? What will the consequences be?”
  • Think about the impact on:
    • your child’s health and development
    • other children in the family
    • your own physical, mental and emotional health
    • your work or studies
    • your family relationships

Collect the evidence

  • Gather any letters, reports or other documents which explain what will happen if you don’t get the help you need – ask the professionals involved with your family, e.g. your G.P, consultants, therapists, teachers etc.

Know your rights

  • Read our Parent Guides on Social Care for more information about the assessment process and how councils decide which needs are eligible for support.

Get it in writing

  • Use our template letter to explain the consequences to your family of not getting support and to ask the council to confirm the reasons for its decisions in writing. There are separate letters for England and Wales.

Make a complaint

  • Every council must have (and publicise) a process for dealing with complaints about children’s social care. If you’re unhappy with the council’s response, you can make a complaint. Our Accessing Public Services Toolkit has more information and template letters.

This factsheet applies to England and Wales

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Life online for young people with SEN

Dawn Cavanagh

Dawn Cavanagh

Dawn Cavanagh, whose teenage son has autism, considers the benefits and challenges of life online for young people with special educational needs (SEN) and discusses ways to teach young people with SEN to navigate the internet safely, while making the most of what the internet has to offer.

Like it or not we are living in a digital age. Today, you can get online anywhere, at any time, and can communicate with almost anyone in the world. Ensuring that young people make the most of the exciting opportunities the internet has to offer, while also being helped to stay safe online is high on the public agenda. But what if your child has special educational needs (SEN)? What then?

Children with SEN include those with emotional, social or behavioural difficulties, learning difficulties, and other complex needs. There are many ways in which young people with SEN are vulnerable to danger on the internet. Children with SEN (and especially those with a diagnosis of autism) may make literal interpretations of content online, which may affect how they respond; they may not understand the concept of friendship, which may lead to them being more trusting than their peers. They may also struggle to make judgements about what information is safe to share or not recognise that they are being bullied. Furthermore, they may not appreciate how their own behaviour may be construed by someone else as bullying.

However, it is not all doom and gloom. There are benefits to using the internet for young people with SEN. The internet can be used in creative and fun ways to support learning and social interaction. For my teenage autistic son, the interactive online gaming phenomenon Minecraft allows players to build and create textured cubes in a 3D virtual world. Minecraft enables my son to have complete control of his environment and to engage in his special interests: time travel and Doctor Who. There is nothing he loves more than jumping in and out of his tardis, exploring new dimensions. Minecraft has helped to nurture his conceptual thinking, so that he has become more adept at problem solving. For example, he has worked out how to operate the tardis without any instruction. Whilst my son gets confused and distressed by others’ attempts to join him in his gaming, some young people with autism benefit from Minecraft’s multiplayer mode, which can help develop their communication and social skills, as well as enhance their creativity.

AutCraft (Duncan, 2015) is a Minecraft server specifically for autistic children and their families. The environment has been modified so that players can roam free from the dangers frequently encountered in the game’s regular modes. While all this is good, the downside of Minecraft is that like so many video games it has the potential to become addictive. This is especially concerning for children with autism who may have tendencies towards obsessive compulsive type behaviour. Excessive screen time is a recurring concern for many parents, especially in terms of time spent away from family, as well as lack of exercise.

Young people with SEN are at greater risk of cyberbullying, online grooming and exposure to inappropriate content, yet less research has been conducted in this area compared with the mainstream population. Of the body of research that currently exists, the risks for a young person with SEN appear to be more profound due to increased vulnerability and social naivety. As a group they are more likely to be lacking in sexual knowledge, have difficulties with compliance or expressing consent, as well as recognising abusive situations. Furthermore, they are less likely to have opportunities to have romantic or sexual partners, so may seek the company of strangers online and offline when lonely (Normand and Sallafranque-St-Louis, 2016).

Research has revealed that many young people with SEN have experienced cyberbullying and discriminatory behaviour such as disablist language or jokes about disability online. This can lead to considerable emotional and psychological distress. Research conducted in the Netherlands, looking at the effects of cyberbulling among students with intellectual (learning) and developmental disability, found that higher rates of cyberbullying are associated with lower levels of self-esteem and higher reported depressive feelings (Didden et al., 2009). Research undertaken by the Anti-Bullying Alliance (England and Wales) (2013) revealed that as well as having experienced cyberbullying and discriminatory behaviour many young people with SEN felt that they had not been taught how to use the internet, or to stay safe online. Moreover, some young people used the internet to create an anonymous persona to hide their disability or actively avoided the internet altogether.

A more recent study (Bannon, NcGlynn, McKenzie and Quayle, 2015) investigating the perception of online risks by young people with SEN (aged 13-18 years) in Scotland revealed that while many young people with SEN were aware of a range of risks online, and could discuss how to stay safe, not all were able to put appropriate safety strategies into practice. Some described befriending strangers on the internet. There were examples of intentional risk taking, perhaps due to peer pressure to perform. For others risk-taking in their online behaviour appeared to be linked with poor understanding of the implications of their actions and/or difficulties with inhibitory control.

There was much variation in supervision and monitoring of online behaviour, with some families putting no supervisory strategies in place, whilst others blocked access to certain content, checked history and/or placed limits on the amount of time the young person spent online. Interestingly, while some young people sought the advice of parents, and occasionally teachers, about managing online risk, many also took the opportunity to learn from peers, especially if they thought that disclosure to a family member was likely to result in removal of internet privileges. Further research is needed, perhaps including parents and teachers, in terms of how best to support young people with SEN to stay safe and strong online, whilst making the most of what the internet has to offer.

So, how do we teach young people with SEN to navigate the internet safely? The first thing is to recognise that life online presents young people with SEN with different challenges, and then to tailor strategies accordingly.  Cerebra (cited in Digital Parenting, 2016), the UK charity dedicated to improving the lives of children with neurological conditions, make the point that young people with learning difficulties can sometimes be more trusting of strangers than other young people. The Cerebra guide (cited in Digital Parenting, 2016) suggests encouraging the young person to use a pseudonym (a fictitious name) online and getting him or her to seek help from a trusted adult if anyone asks for personal information, such as their address or where they go to school. The young person might also benefit from joining an online community that has been specifically set up for people with learning difficulties.

Further suggestions for limiting risk online for children and young people with autism and learning disabilities is available in Cerebra’s guide: Learning Disabilities, Autism and Internet Safety, available on Cerebra’s website.

©Dawn Cavanagh 2017, writing as a parent contributor for the Family Research Ambassadors Project run by the Centre for Education, Development and Research (CEDAR), at the University of Warwick and Cerebra.

­­­­­­­­­References

Anti-Bullying Alliance (2013) Cyberbullying and children and young people with SEN: the views of young people. Retrieved 13th February 2017. Available from https://www.anti-bullyingalliance.org.uk/sites/default/files/field/attachment/disabled-young-peoples-views-on-cyberbullying-report.pdf

Bannon, S., McGlynn, T., McKenzie, K. & Quayle, E (2015). The internet and young people with Additional Support Needs (ASN):  Risk and safety.  Retrieved 13th February, 2017. Available from http://www.sciencedirect.com/science/article/pii/S0747563215000321

Normand, C.L. & Sallafranque-St-Louis, F (2016). Cybervictimization of Young People with an Intellectual or Developmental Disability: Risks Specific to Sexual Solicitation. Retrieved 13th February, 2017. Available from https://www.ncbi.nlm.nih.gov/pubmed/25871891

Didden, R., Scholte, R.H.J., Korzilius, H., Jan, M. H., Moor, D.E., Vermeulen, A., O’Reilly, M., Lang, R., & Lancioni, G.E (2009). Cyberbullying among students with intellectual and developmental disability in special education settings. Retrieved 13th February, 2017. Available from https://www.ncbi.nlm.nih.gov/pubmed/19466622

Digital Parenting (2016). Vodaphone UK. Retrieved 13th February, 2017. Available from http://www.vodafone.com/content/digital-parenting.html

Duncan, S (2015). Autcraft.  Retrieved February 13th, 2017. Available from http://www.autcraft.com/

Useful links:

Anti-Bullying Alliance: http://anti-bullyingalliance.org.uk/

Autcraft:  http://www.autcraft.com/

Digital Parenting website:  http://www.vodafone.com/content/digital-parenting.html

Digital Parenting magazine: http://www.vodafone.com/content/digital-parenting/learning-and-fun/digital-parenting-magazine.html

Special Friends (Free online community for people with learning disabilities, and their parents and carers): http://www.specialfriends.com/public/

Video Game Addiction Helpline: http://www.videogameaddiction.co.uk/gaming-addiction/minecraft.html

Factsheet: What to do if your child’s care package is reduced

The problem:

Families often ask for help from our Legal Entitlements and Problem-Solving (LEaP) Project because they’re unhappy with the way a local authority has changed or reduced their child’s care package.

For example:

  • a council panel reduces a family’s care package from 8 hours to 6 hours a week because of “the increased cost of agency staff”
  • direct payments are reduced without a re-assessment
  • a social worker says that a service is no longer available and there are no alternatives on offer

The law:

Councils must meet the eligible social care needs of disabled children. A care package should be based on an assessment of those needs and it shouldn’t be changed or reduced without a re-assessment.

For example, if a child has been assessed as being eligible for 8 hours of support per week, then the council is required to provide this support, regardless of resources. The courts have held that local authorities cannot ‘trim the assessment of need to fit the available provision’ 1, i.e. they can’t adjust a child’s level of need to suit their own resources. Once a decision has been made that a child has a certain level of need, the council must meet those needs.

If, as a result of a reassessment, the support package is reduced or changed in a significant way, the council must provide a detailed and convincing explanation as to why this is happening (for example because the child’s condition has improved substantially). The council must demonstrate why the previous level of support is no longer required.

Councils can’t rely on budgetary constraints as the sole reason for cutting a care package. Cost implications should not be taken into account when it comes to deciding whether a child has needs which are eligible for support.

When a council has decided that a child does have eligible needs, it is allowed to take its resources into account in deciding how to meet those needs. It does not have to provide a ‘gold standard’ service if a cheaper alternative would meet a child’s needs. However, any cheaper alternative must actually exist – a council can’t just suggest a care package which doesn’t in reality meet a child’s needs or cost less. Councils can’t impose arbitrary limits on what they are prepared to pay for care packages.

Councils which fail to give convincing reasons for reductions in care packages are likely to be criticised by the Ombudsman2.


The solution:

Know your rights

Read our Parent Guides on Social Care for more information about the assessment process and how councils decide which needs are eligible for support.

Collect the evidence

Gather any letters, reports or other documents which show that your child’s care needs have stayed the same (or increased) – ask the professionals involved with your family, e.g. your G.P, consultants, therapists, teachers etc.

Get it in writing

Use our template letter to challenge a proposed cut in your child’s care package.

Make a complaint

Every local authority must have (and publicise) a process for dealing with complaints about children’s social care. If you’re unhappy with the council’s response, you can make a complaint. Our Accessing Public Services Toolkit has more information and template letters.


References


1 R v Islington LBC ex p Rixon (1997-98) 1 CCLR 119

2 See, for example, the Local Government Ombudsman’s reports on investigations into complaints against Thurrock Council (10 October 2013 – www.lgo.org.uk/decisions/children-s-care-services/other/12-005-756) and London Borough of Lambeth (16 August 2012 – www.lgo.org.uk/decisions/children-s-care-services/disabled-children/11-010-725). Summaries of reports issued by the Public Services Ombudsman for Wales are available at https://www.ombudsman-wales.org.uk/en/publications/The-Ombudsmans-Casebook.aspx

This information applies to England and Wales

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New books in our library

In recent months the library has had less money to buy new books and it’s been hard to choose which books to buy out of all the new publications and suggestions from library members.

Here are our most recent new books. We’ve chosen ones on subjects we are asked for most frequently and we’ve received a few donated books too.

Books

  • L6700 Successful Social Stories for Young Children: growing up with social stories by Siobhan Timmins
    ISBN 9781785921124 2016
  • L6702 Toby and Sox: the heartwarming tale of a little boy with autism and a dog in a million by Vikky Turner
    ISBN 9781785032004 2016
  • L6698 The Out of Sync Child Grows Up: coping with sensory processing disorder in the adolescent and young adult years by Carol Stock Kranowitz
    ISBN 9780399176319 2016
    This is the latest book in the very popular series of the out of sync child books
  • L6699 Understanding Sensory Processing Disorders in Children: a guide for parents and professionals by Matt Mielnick
    ISBN 9781785927522 2017
  • L6671 Neurotribes: the legacy of autism and how to think smarter about people who think differently by Oliver Sacks
    ISBN 9781760113643 2015
    The Sunday Times Bestseller and winner of Samuel Johnson Prize for Non-fiction 2015
  • L6694 The Gentle Sleep Book: a guide for calm babies, toddlers and pre-schoolers by Sarah Ockwell-Smith
    ISBN 9780349405209 2015
  • L6685 More Than Words: helping parents promote communication and social skills in children with autism spectrum disorder by Fern Sussman
    This is an extra copy of a very popular title very kindly donated to us by a library member
  • L6708 Hope: celebrate your baby with Down Syndrome by Tania Khan
    Donated by the author
  • L6701 Special Educational Needs and Disability Discrimination in Schools: a legal handbook by Sarah Hannett et al, published by the Legal Action Group
    ISBN 9781098407764 2017

DVD

AV6691 Autism and Me by Rory Hoy
This is a very good dvd of a television documentary, explaining what it’s like to have autism, that is often recommended to people after their child has been diagnosed.

Children’s Books – ages 5 to 8+

  • C0266 Autism Superheroes by Johanna Manikiza, published by ASD Info in Wales
    Non-Fiction explaining autism to children (bilingual – in English and Welsh)
  • C0267 Autism Superheroes Comic Strip by Johanna Manikiza published by ASD Info in Wales
    Fiction explaining autism to children (bilingual – in English and Welsh)
  • C0270 Emily’s Sister by Michele Gianetti
    Fiction for the siblings of a child with dyspraxia and sensory processing disorder
  • C0269 My Book of Feelings by Tracey Ross
    Non-fiction explaining different feelings to children
  • C0268 When My Worries Get Too Big by Kari Dun Buron
    Non-fiction explaining anxiety and relaxation to children with developmental disabilities

If you are not already a member of the library fill in the form on our library page.

Brody, Me and Global Development Delay

Brody

Brody

Laura is mother to 5 year old Brody who, despite having lots of health issues, has no definitive diagnosis. Laura writes about their journey as a family in her blog Brody, Me and GDD. In this blog post, Laura explains their journey as a family.

“Our beautiful Brody entered the world just over 5 years ago. He passed all of his newborn tests and was a really content and happy baby. I was completely unaware of undiagnosed genetic conditions back then and the journey we were about to take together. He was, and still is, is a total joy (forgetting about when he has a tantrum of course!).

I began to notice that he wasn’t developing typically when he was a few months old. A classic case of mother’s intuition coupled with all of the baby and toddler classes I signed up to.

First there was Water Babies, where all of the other babies looked ahead when they were placed on their tummies and held underneath their chest in the water. Brody struggled to keep his head up at all. I’d go back to the changing room afterwards amazed at how all of the other mums would let their babies sit on the hard floor with a towel wrapped round them whilst they got dressed. Not scared of them falling back and hitting their heads at all – because they didn’t fall back.

Then there was Rhythm Time where all of the babies babbled and waved on queue. As the months went by they were able to perch on their mum’s knees with ease and understood to go and get their “rhythm sticks” out of the basket and when to put them back. I’d wedge Brody in-between my legs so that he was well supported and the woman who ran the class would kindly pass me our rhythm sticks. More often than not, I’d swallow the lump in my throat as another child took pleasure in taking ours back to the basket afterwards.

Next up was Toddler Sensory. The last class I put myself through. Where all of the toddlers were able to walk along the obstacles, understand the basic games, attempt to sing along to songs and eat the snacks without gagging or throwing up.

Honestly, those baby and toddler classes were heart breaking because the worry back then was unreal. One of the hardest stages of this journey was when I just knew something wasn’t quite “right”, but family, friends, and health professionals tried to convince me otherwise.

He was “just slow” and “a typical boy”.

And the constant vomit that we experienced on a daily basis and inability to eat solid food was just reflux. Food aversion and delayed speech? Apparently also refluxes fault.

Then just before Brody turned two, he had a cluster of seizures and was hospitalised for a few days. It was a pivotal moment for us as a family. The health professionals began to take notice and I was told he had Global Development Delay. We had no answers, but a list of new people in our lives – paediatricians, an OT and a physiotherapist, to name but a few.

Lots of parents have similar journeys and tests go on to reveal a diagnosis. However, our journey has been one that’s lacked answers. What we do know now, a few years on, is that Brody has a learning disability, autism and epilepsy. He also has low muscle tone and hypermobile joints. But Doctors can’t find a unifying diagnosis to explain his disabilities and symptoms so he remains primarily undiagnosed, despite lots of tests.

We are part of a genetics study called the DDD (Deciphering Development Disorders) study, but this may not bring us answers and can take years to get results. I’m already knocking on genetics door to get us on to the 100,000 Genomes project, but of course, it’s never that straight forward. We’re on a waiting list and apparently it’s “amber”.

We are living in limbo.

But I know we’re not alone thanks to a charity called SWAN (Syndromes Without A Name) UK. Amazingly, it’s estimated that 6000 children are born every year in the UK without a diagnosis to explain their disabilities. And many of these children remain undiagnosed into adulthood.

We may never get a diagnosis.

That’s not easy to come to terms with. I love Brody with all my heart and I know that everything happens for a reason. But sometimes I wish I knew what that reason was. No diagnosis means no prognosis after all. Still, having others to talk to who can relate really helps. It can make you feel less isolated in a world of unknowns.

SWAN UK is the only dedicated support network for families of undiagnosed children in the UK and it’s so important to me that other families know that it exists.

The mum who is currently attending the baby and toddler classes, noticing gaps in her child’s development and the difference between them and their peers.

The mum who’s told everything is “just reflux”.

The mum who’s told that boys are “just lazy”.

The mum who is knocking on doors but not yet being heard.

The mum who’s just heard the words Global Development Delay in a white walled Doctors room, or a more honest “we don’t know”.

And the Dads too of course!

I want them to know as soon as possible that they’re not alone. I wish I’d known that sooner. It may not change the path that you’re on, but it will definitely help you on the journey.

To find out more about SWAN UK visit www.undiagnosed.org.uk or email joinus@undiagnosed.org.uk.

And if you want to follow our journey, you can find us at Brody, Me & GDD on WordPress, Facebook and Twitter“.

Don’t forget you can also give our freephone helpline a call on 0800 328 1159 if you need help or advice, or visit our website.

Better Bedtime Routine

Our Sleep Practitioners provide support for families on a range of sleep issues. One of our Sleep Practitioners, Sarah Coldrey was recently able to Oscar settle into a regular bedtime routine. His mum explained how this has helped.

“I’ve just put Oscar to bed. It’s 9.15pm and I’m now sat downstairs enjoying peace and quiet while he settles… In his own bed, in his own bedroom, upstairs alone.

He may wake up once during the night. If he does, I will return him to his bed and he will go back off to sleep, usually within 10 minutes… no great fuss.

Nowadays, more often than not he does not wake during the night.

He will wake at around 6am and sometimes climbs into our bed for a cuddle before dozing for another hour. Some mornings he is awake a little earlier, at around 5am, but again dozes until it is time to get up. And on rare mornings he wakes up at about 6am and he doesn’t need to doze, so we get up.

But gone are the 4.30am-5.30am regular starts to our day.

Also gone are the two hours spent settling him every night, with one of us having to stay in his bedroom until he finally fell asleep at gone 10pm.

Gone, too, are the night wakings, often up to three or four times between going to sleep at around 10.15pm and starting the following day at 5am.

What we have now is something that, just a few months ago, was unimaginable.

Last August, Oscar was nine years old, a month away from his ASC diagnosis and had never slept the night through. He had always needed us with him to settle. He had always woken throughout the night. And very often he was awake for the day before sunrise.

And then we embarked on a Cerebra sleep programme with the lovely Sarah Coldrey, who visited us and gave sound advice about Oscar’s bedtime routine (we had a routine in place so we just needed to tweak it!), a plan to follow for settling and managing night wakings and, most importantly, the inspiration for us to succeed.

Sarah explained how what seemed like the unachievable was, in fact, quite achievable – slowly.

All we had to do was follow the plan. We were in it for the long haul, not expecting this to be a quick fix. But, just three months after starting the sleep programme, we were seeing results.

Our gradual withdrawal from Oscar’s bedroom as he settled turned out to be easier than we had ever thought possible. We’d previously attempted something similar but had given up because we had, in hindsight, expected progress to be much quicker.

This time we took baby steps – and they worked.

Oscar is now functioning much better during the day. He says he is ‘not as grumpy’ – positive proof that a good night’s sleep is good for everyone!

Thanks Cerebra, thanks Sarah!”

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

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.

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.