New guide for parents of children with learning disabilities launched in Northern Ireland

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A new Parents Guide to promote the well-being of children with learning disabilities and develop positive family relationships has been launched in Northern Ireland.

The Guide, developed by researchers from the University of Warwick working alongside the parents of children with learning disabilities, Mencap, Cerebra and the Challenging Behaviour Foundation, was launched in Belfast in May.

Research has shown that young people with learning disabilities face more barriers to achieving well-being than children without a learning disability, but also that there are practical steps and strategies which parents can take to change this.

Combining the practical wisdom of parents with insight from the University of Warwick’s 20 years of research into the wellbeing of families of children with a learning disability, the new guide presents hints and tips, backed up by research, for parents to use in their family lives.

The Parents Guide has been created to help parents support the well-being of children from 0 – 5. It offers suggestions on ways to build and support warm, positive family relationships, and also includes a chapter on activities parents and siblings can do to support the development of a child with learning disabilities.

Each chapter includes advice from parents, suggested activities, and space for personal notes and reflection.

Parents invited to give feedback on the guide before its launch said:

The tone of the booklet is really reassuring, and easy to understand. It makes a nice change from the booklets we usually read that are full of jargon.

The best bit of the booklet for me is hearing about other people’s experiences and coping mechanisms. It makes me realise that we aren’t alone. I just wish we had had something like this when our son was born.

Every chapter is so relatable, and it’s so useful to read about all of the activities.

I want to complete the reflection activity and review this to see if I did set some time aside for myself. I think that putting it somewhere I can see it, like on the fridge, will remind me to do it.

I think that this booklet is amazing information for parents to know.

The guide has been written by Dr Samantha Flynn, Dr Vaso Totsika and Professor Richard Hastings of the University of Warwick’s Centre for Educational Development, Appraisal and Research (CEDAR), in collaboration with family carers of children with learning disabilities, Margaret Kelly and Joanne Sweeney of Mencap Northern Ireland, Tracy Elliott from Cerebra and Viv Cooper OBE and Jacqui Shurlock from The Challenging Behaviour Foundation.

Dr Totsika said:

We wanted to share what CEDAR has found out about the best ways parents can support the well-being of children with learning disabilities in a format that was easy to understand and also easy for parents to put into practice.

We are very grateful to the parents who worked with us on the Guide to put our research into context, and share their own experiences of supporting a child with learning disabilities through examples from their own lives.

Margaret Kelly, Director of Mencap NI said:

We are delighted to have worked alongside the University of Warwick, parents and various organisations to produce this wonderful guide to help support parents of young children with a learning disability.

There are currently 5,000 children with a learning disability under the age of seven in Northern Ireland and we believe every young child with a learning disability should have access to early intervention services that support their development from birth.

At Mencap, we are committed to ensuring children with a learning disability and their families have access to effective early intervention services and approaches and we believe this book will be of support to so many parents of children with a learning disability.

Tracy Elliott, Head of Research and Information at Cerebra, said:

Cerebra is the charity that works with families who include children with brain conditions. By listening to families we know that one of their key concerns is for their child’s well-being, but they often question what well-being means for their child and how can they promote it.

Using research evidence, this booklet will answer key questions families have and give them ideas of what they can do to enhance their child’s and family’s well-being.

Finally, Jacqui Shurlock, Children and Young people’s lead at the Challenging Behaviour Foundation said:

The Challenging Behaviour Foundation supports families of children and adults with severe earning disabilities whose behaviours are described as challenging.

Families tell us that it is really difficult to get good information or support when children are small and that sometimes professionals dismiss their questions or concerns about how to manage day to day life. Families want the right information at the right time, presented in the right way. This booklet is a real step in the right direction. We hope families will find it useful and we very much hope to see other researchers following this example.

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Special World, from Inclusive Technology, is a free website linking 125,000 special education teachers, speech therapists and occupational therapists in 150 countries. Special World readers and contributors work with children who have additional needs or special educational needs including those with severe, profound and multiple learning difficulties and disabilities.

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