Tag Archives: advice

Accessing Public Services in Scotland: A problem-solving toolkit

Scots law provides powerful rights to education and support from other services, but this alone is insufficient. The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. This guide aims to help unpick these problems and to develop effective strategies for resolving them.

You can download the toolkit below.

Download Accessing Public Services in Scotland: A problem-solving toolkit PDF

Published 2017. This edition 2017. Review date 2020.


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.

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.

Finding and Assessing Sources of Legal Help: A Guide for Parents

Parents of disabled children might well need to seek legal advice at some stage in their lives for a whole host of reasons. The child may have been injured, may not be getting the educational support to which they are entitled, or they may even need representation at a police station. There will also likely be a need to consider making a will and other financial arrangements for their child.

Identifying and approaching a solicitor for legal help can be one of the more daunting prospects for families and carers of children with a disability. The choice of your solicitor is critically important. This guide is intended to make that approach as straightforward as possible.

Download Finding and Assessing Sources of Legal Help

First published 2013. This edition 2017. Review date 2019.


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.

 

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.”

Sleep Practitioner Helps Family With Sleep Issues

SleepOur Sleep Practitioner Pattie Everitt tells us how she was able to help a family with their sleep issues.

“Twelve year-old Stephen who has ASD lives with his parents in Birmingham.  His main sleep issue was waking up very early (around 4am) and not being able to go back to sleep.  His parents encouraged him to go to bed and try to sleep and he was very good at staying in his bed but he did not feel tired.  As a result he was very tired by tea time but kept awake by his parents until around 8:30pm/ 9pm, with the hope he would sleep in until a reasonable time.

I spoke to Stephen’s mum Alice on the telephone for thirty minutes to support them in putting some strategies together.  They were advised to try a much earlier bedtime for a temporary basis, by following Stephen’s natural sleep pattern (the time he feels tired and sleepy), and then to then make gradual changes.

They tried a bedtime of 5:30pm to start with and moved this by fifteen minutes each day until they got to 8:30. They found that by moving the bedtime gradually, this resulted in gradually waking up later in the morning, finally reaching 7am.

This was a big achievement for the family, as this programme had being going on for many years.”

You can find more information about Cerebra’s Sleep Service on our website.

Sleep Practitioner Gives her Top Tips for Sleep

baby-1151351_1920Clare Varey, Cerebra’s Sleep Practitioner for the Yorkshire area, gives her top tips for getting your child to sleep.

“Sleep for some children is just like any other skill that has to be learnt. It can take time and patience and requires repeating many times before it becomes mastered. One aspect that can have a huge impact on sleep is having an effective bed time routine in place. This helps the child understand how to fall asleep and what is expected at bedtime. Once established the routine can help them to feel safe and reassured, reducing time taken to settle and reducing the impact of night waking/early rising.

Here are my top tips for an effective bed time routine:

  • A bedtime routine should not last longer than an hour. Any longer and children won’t be able to link what they are doing with feeling tired and sleepy once they are in their bed
  • Turn off TV/computers/tablets and phones. These devices all emit light into the brain which will be telling the brain it’s still daytime, making it harder for children to ‘wind down’ and feel tired
  • Start with an activity downstairs that will help them to calm down. If you’re stuck for ideas, have a look on the internet
  • Offer a light supper. Foods that contain Tryptophan are good as this makes Melatonin – our hormone that makes us feel sleepy
  • Move to bathroom and offer a bath (only if they can relax, if you find its stimulating bath earlier in the evening) teeth and toilet
  • Into the bedroom – it should be dark. Use a red based night light if children are scared of dark. This can be kept on all night as red light doesn’t stimulate the brain or affect Melatonin production
  • Introduce a smell to bedroom, such as Lavender
  • Put on pyjamas, offer a massage. This releases a hormone called Oxytocin which relaxes you.
  • Read a short, familiar story
  • Try using a low level music such as alpha/delta wave music which can be kept on all night if needed
  • Say goodnight and leave /stay if needed initially
  • By helping all the senses, this can provide your child’s brain with reassurance and understanding of how to fall asleep, avoiding the bedtime battles that many of us experience

I can provide parent presentations, workshops, sleep clinics, telephone support and in some cases I am able to offer home visits to discuss the sleep difficulty”.

Please visit our website for more information about Cerebra’s sleep service and how to get in touch.

Managing Challenging Behaviour Factsheet

Challenging behaviourSome behaviours are a challenge to professionals, teachers, carers and parents. This factsheet gives information on how to manage challenging behaviour by considering five key points:

What is challenging behaviour?
Why does challenging behaviour happen?
Understanding challenging behaviour
Where do I find professional help?
What further information is available?

Download Challenging Behaviour Factsheet PDF

Published 2015. This edition 2016. 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.

Accessing Public Services Toolkit

Accessing Public Services Toolkit cover imageThis Accessing Public Services Toolkit aims to support disabled people and carers, as well as their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. This toolkit aims to unpick these problems and to develop effective strategies for resolving them.

You can download the Toolkit below.

Download Problem-Solving Toolkit PDF

Published 2016. This edition 2017. Review date 2020.


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.

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.


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.

Returning to school: A teacher’s guide for pupils with brain tumours, during and after treatment

Return to school coverThis publication aims to guide teachers and schools faced with the task of supporting a pupil with a brain or spinal tumour who may be absent for some time, or who may have sporadic attendance with a very serious illness and potentially devastating long term effects.

It explains what the pupil may be going through both medically and psychologically. It offers practical strategies for ensuring supportive re-integration 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.

Download 'Returning to school: A teacher's guide for pupils with a brain tumour, during and after treatment' PDF

BMA Patient information awards_highly commended

Highly Commended in  Special Award-NHS Trusts in the BMA Patient Information Awards 2016.

 

Factsheet: Recommended teaching strategies for pupils with a brain tumour

Marsden factsheet cover

This factsheet gives information on how a school can assist a pupil with a brain tumour. In particular it pinpoints a number of different strategies to use as memory and cognition in some, but not all, pupils with a brain tumour can be seriously affected by their treatment.

Download 'Factsheet: Recommended teaching strategies for pupils with a brain tumour' PDF

 

Infographic: What to do when a child is diagnosed with a brain tumour

Marsden diagnosis infographicA child with a brain tumour will be encouraged to return to school as soon as possible after initial diagnosis and treatment, even if only for a few hours or half days per week. Here are some tips for the time when the pupil is away from school having treatment and following their return to school.

Download 'What to do when a child is diagnosed with a brain tumour' infographic PDF

Infographic: What to do if a pupil with a brain tumour become palliative and may die

Marsden palliative infographicThis infographic provides information on how the school community can create a climate where the pupil’s independence, hope and dignity are respected, and consideration given to how siblings, other pupils and members of staff may also be feeling.

What to do if a pupil with a brain tumouor becomes palliative and may die' infographic PDF

All information on this page published 2015. This edition 2015. Review date 2018.


Feedback form

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.