Tag Archives: support

Sleep Practitioner Helps Nelli

Nelli and Iveta

Nelli and Iveta

Our Sleep Service gives support to families whose children are having problems with their sleep. Claire Varey, our Sleep Practitioner in the north of England, shares some advice that recently helped a family she worked with.

“I recently worked with Iveta, Lucie and Nelli to  address a sleep disturbance that was affecting the whole household. Nelli is 4 years old, she has Autism and doesn’t have verbal communication. Nelli is very active, ‘always on the go’ and getting her to settle at night time took hours. She was finally falling asleep between 12am and 2am.

Nelli’s mum, Iveta,  had difficulty waking Nelli up in the mornings to get her ready for school.  She was then falling asleep during the day which further compounded the issue. Iveta doesn’t speak much English so when she got in touch asking for help,  I arranged to have a telephone consultation with Iveta’s other daughter Lucie who could translate for her.

During our call I was able to provide information to help Iveta understand Nelli’s behaviours. I suggested ways to help her calm and reduce the stimulation in the evening, which would reduce the time it took Nelli to fall asleep. Between us, we worked out a programme that Iveta felt happy she could follow each night, therefore helping Nelli learn how to fall asleep well.

Nelli was having difficulty understanding when it was an appropriate time to sleep and so we discussed ways in which Nelli could use signals to help her brain start to calm in the evenings. Firstly, I encouraged Iveta to get Nelli outside in the afternoon’s as much as she could and to add that into her daily routine. Movement is important and an excellent way to help release tension from the day, but I informed Iveta that too much jumping and bouncing too close to bedtime, or doing these activities in the bedroom, would only keep Nelli’s brain active and reduce the chances of her falling asleep.  Also it appeared that Nelli may have associated her bedroom and bedtime as an extension of playtime rather than it being a calming and peaceful space where she should be sleeping.

We identified that bath time was quite stimulating for Nelli, so I suggested that she had her bath earlier to give enough time for her to calm down before bed.

I also suggested a later bedtime as Nelli was not showing any signs of being tired at the time she was put to bed. With this we looked at the hour leading up to bedtime, to introduce a calm activity for 15 minutes, such as massage, then offer some supper (certain foods promote sleep) and then up to the bedroom. I offered advice about using red light, dark room (blackout curtains/blinds very useful) and then to avoid too many toys or bouncing on the bed as these can distract and stimulate.

I arranged follow up telephone support, where we had could iron out a few issues, such as Nelli starting to wake and wanting to play on her tablet. I suggested using an object of comfort to replace the tablet, so that Nelli could make a positive association which was more appropriate than using the tablet.

I also suggested that they speak with school to reduce or stop Nelli’s afternoon nap, as this  could also be having a negative effect on her settling at an appropriate time in the evening.

Nelli is now settling between 9-10 pm, waking easier in the morning, her behaviour has improved through the day, her aggression has reduced and she goes to sleep much calmer too.

Iveta is happy with the information and support she received and knows she can get back in touch if she needs any future support. She would also like to thank Mrs Moore in Broadgreen Primary School who helped to put her in contact with Cerebra”.

We have a team of sleep practitioners who can offer help and advice on a wide range of sleep issues.

Emotional Support Website

IMG_6477Joanna Griffin is a Chartered Counselling Psychologist who also has her own child with a disability. She runs a website, Affinity Hub which aims to provide emotional support to parents and carers of children with special needs.

“Having a disabled child often means having to deal with additional associated challenges in practical, physical and emotional terms. My own journey into the world of special needs started when my eldest son was born.  Unfortunately due to mis-management, poor communication and a blocked theatre when he was delivered he was in a very poor condition and it took 23 minutes to resuscitate him. We were told that he may not smile, walk or talk.

Nine years on he does smile, walk and talk but has many difficulties and different diagnoses caused by the deprivation of oxygen at the time of birth.

Coming to terms with his diagnoses and difficulties has been a long, often painful, road.  New challenges have presented themselves along the way and I’ve been struck by what a difference it can make dealing with an understanding and empathic professional, or speaking to a parent who has experienced similar difficulties, particularly to my emotional wellbeing.

From my own personal experience I felt that parent-carers sometimes needed specific emotional support in order to help process their experiences and feelings. This was supported by my previous professional experience, as a Home and School Visitor at Hemihelp, as well as a pilot research study I undertook about other parents’ experiences and emotions.  The survey found that 100% of parents reported feeling stressed or anxious about their disabled child.  This correlates well with Cerebra’s study into stress in families which led to the excellent booklet ‘Managing Stress for Carers and Families’. In my study parents also reported feeling anger (66%) about their child’s disability and 60% felt depressed or down.  There were also feelings of helplessness (52%), guilt (50%) and denial (22%).

Exactly half of respondents reported a negative impact of having a disabled child on their own life, although many indicated that this could change depending on the time and day and they were only given the option to respond as either positive or negative.  Over 70% felt there had been a negative impact on siblings and nearly 80% on their relationship with their partner.

P1040210On a positive note, many parents reported feelings of pride (74%) and an inner strength or resilience (60%) that helped them get through their experiences.  Half of the respondents also reported having a ‘fighting spirit’ (52%) to advocate on behalf of their child.

Psychologists talk about post-traumatic growth and for 80% of respondents it had helped them put life into perspective, grow as a person (70%) and become more tolerant (65%). Many reported increased confidence in their ability to support their child, as they become the expert and, at times, counter the views of certain professionals.

I believe that if parents of a disabled child seek counselling they require someone with specific experience and knowledge to be aware of the many different factors that can have an affect on a parent-carer.  This may include: attending numerous appointments, fighting for services and limited resources, needing to ‘grieve’ for the healthy or idealised child one expected to have, lack of sleep, financial concerns, pressures on relationships, worries for the future, the trauma of seeing your child nearly die or undergo invasive procedures and concern for the impact on siblings. These are all difficult things to experience, process and accept alongside the day-to-day looking after a child and remembering that your disabled child is just a child who needs to play, be loved and hugged and learn about the world as any other child does.

Unfortunately trying to find organisations or professionals that can offer emotional support and understand the complex issues connected with having a disabled child, can sometimes be difficult.

In response I have developed a website of emotional support for parents of children with special needs.  The website, Affinity Hub, aims to provide a virtual home for parents to realise that they are not alone. There are many other families also going through similar experiences and feeling similar complex emotions. Hopefully by reading about this it can reduce isolation.

The Professional Support section lists organisations that provide emotional support as well as private counsellors, psychotherapists and psychologists that have experience of supporting this specific client group. I am in the process of identifying practitioners across the UK.

The website not only lists many common emotions parents might experience, it also includes quotes from other parents about their experiences and what advice they would give to other parents. There is also a growing list of books and reference material that parents have found helpful.

Although much of this information is available online if a parent were to search for it I hope that by bringing it all under one umbrella it will help parents and reduce the time (very precious to us parents) they have to spend looking.

Please share your views by completing the survey on your experiences as a parent of child with special needs on the home page at www.affinityhub.uk.”

Social Care in England: A Guide for Parents

This guide has been prepared for parents of disabled children in England who want to know how to get help for their child’s social care needs. It principally deals with the responsibilities of the local authorities to provide social care for disabled children, as well as support for the parents/carers of those children.

Download Social Care in England: A Guide for Parents PDF

First published 2012. This edition 2015. Review date 2018.


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Could you be an Ambassador for Cerebra?

Cerebra Ambassadors group photo

Some of our Ambassadors at the Cerebra Children’s Awards 2014.

Cerebra has a team of ambassadors, made up of parents, carers and professionals, who are passionate supporters of our work.

Our ambassadors come from all sorts of backgrounds and walks in life – what they share is a passion for the work that Cerebra does and a desire to let other people know about it. They help to raise awareness of the charity in their local area giving as much or as little time as they can spare. We really couldn’t do it without them.

Family relaxing togther

The Hoyle family

David and Mary-Jane Hoyle are just two of our enthusiastic Ambassadors . They support Cerebra because when they were told that their beautiful 18 month old daughter Annie-May had massive brain damage, cause still unknown, they felt lost and alone with nowhere to turn: “Cerebra have been with us on our journey and we can’t praise them enough”.  In supporting Cerebra the Hoyles have attended and given talks about the charity, raised money through sponsored events and appeared in a promotional video. You can meet the rest of the team here.

If you think you could be an Ambassador, or know someone who would, please get in touch with Elaine Collins on 01267 242583 or elainec@cerebra.org.uk. We’d love to hear from you.

If you’d like to find out more about the Ambassador role you can download the role profile here.

Cerebra Ambassador Role Profile

Annual Conference 2014

academic%20conference‘Problem solving: accessing decent services and support for children with complex needs and their families’

On Tuesday 7 October 2014 we held our annual conference for academics, practitioners, educators and carers. The day provided up to date, evidence-based information on the commonly encountered barriers experienced by disabled children and their families in accessing their legal rights and practical approaches to breaking down these barriers.

We’d like to thank everyone who attended and our excellent speakers for making the day a success.

Videos of the presentations and speaker slides from the day can be accessed by clicking on the the speakers names below.

Key speakers included:

    • Professor Chris Oliver (University of Birmingham): Meeting the needs of children with severe intellectual disability: From response to strategy.
    • Professor Richard Hastings (Warwick University): Parents’ and service users’ experiences of challenging behaviour services.
    • Dr Janet Read and Dr Claire Blackburn (Warwick Medical School): Socio-economic influences on outcomes for disabled children.
    • Alison Thompson (Parent and author): Accessing services: the view from a parent.
    • Dr Maggie Atkinson (Children’s Commissioner for England): ‘We want to help people see things our way’.
    • Nigel Ellis (Executive Director and Local Government Ombudsman): Commonly occurring problems experienced by disabled children and their families.
    • Polly Sweeny (Associate solicitor, Public Law Department Irwin Mitchell): Educational, Health and Care Plans: legal rights of disabled children under the Children and Families Act 2014.
    • Professor Luke Clements (Cardiff University Law School): Helping families to access their legal rights.

Please click here to see the Question and Answer Session for the day.

Sponsors for this event:

Irwin Mitchell Cerebra would like to thank Irwin Mitchell Solicitors who are sponsoring and supporting this event.

Full colour Irwin Mitchell logo

The Big Lottery Fund Cerebra would like to say a huge thank you to the Big Lottery Fund, who have provided a grant of £9,900 towards the charity’s annual conference.

Other sponsors

Olympus Community logos         Great%20Portland%20Estates         Print     scot bader

Dr Maggie Atkinson

Maggie‘We want to help people see things our way’


Affiliation:
Children’s Commissioner for England since March 2010

Biography: Dr Maggie Atkinson is the second post holder in this vital role, which enables her to promote and protect the rights of the child, and to encourage children and young people, families, opinion shapers, policy makers and practitioners to join her. After a 35-year career working with and for children and young people, she is a fearless defender of their entitlement to be valued and heard as young citizens making positive contributions to the society in which they will, in their turn, become adults. Maggie has led the Office of the Children’s Commissioner in a period when its influence has continued to increase, leading to positive changes in the life chances of England’s children and young people, especially the most vulnerable and marginalised among them. Her office’s small team has helped to prompt policy and practice changes for asylum seeking and refugee children, children in contact with social care, the family courts and other vital services, those excluded from school, in conflict with the law, or struggling with mental and emotional health difficulties. She is now leading the Office of the Children’s Commissioner through the strengthening of its role and remit that will follow from legislative change being made during 2013-14. She is a member of the Department of Health’s Children and Young People’s Health Outcomes Forum, with a particular focus on challenging England’s many social inequalities and their negative effects on children’s health.

Maggie is a Cambridge graduate. Training at Sheffield University, she was a secondary school teacher of English and Drama, including leading a high school department, before working on a National Curriculum English Language initiative and then in training, inspection, school and service improvement in local government. She was the first Director of Children’s Services for Gateshead during radical changes following the Children Act 2004. During her six years there she was the first solo President of the Association of Directors of Children’s Services (ADCS) in 2008-09.

Maggie graduated as a Doctor in Education (EdD) at Keele University in 2008 and is now an Honorary Professor there. She was awarded an Honorary Doctorate of Civil Letters (DCL Hon Causa) from Northumbria University in 2010.

Arrest and Detention of Disabled Children: A Guide for Parents

Arrest and DetentionThis guide aims to provide parents and family members with information about the processes involved if their disabled child has contact with the police, their rights, and useful organisations and resources which can provide further help and support.

Download Arrest and Detention of Disabled Children PDF

*  Due to recent legislation 17 year olds are now included in the definition of arrested juvenile. They are no longer classed as adults in police custody and can have an appropriate adult present when questioned or cautioned.

First published 2011. This edition 2015. Review date 2018.


 

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.