Emotional support for parents of a child or young person with a learning disability

At whatever stage a child or young person receives a diagnosis of a learning disability, their parents/carer(s) are suddenly faced with new feelings and challenges. These range from feelings of shock, denial, grief, loss and confusion to worry about the future.

These feelings may also re-emerge after diagnosis at each life cycle stage or transition. The disability impacts on not only your child but the whole family and it is important to make sure you and your family gets the right support to enable you to come to terms with your child’s needs and the adjustments you have to make.

Different families experience different levels of stress when caring for their child with a learning disability, and the amount of stress each family member might feel is individual and will change over time. Some family members will experience high levels of stress at times, while others will say that they are coping well.

The disability may impact on your life as a parent/carer as you need to support your child to attend more hospital or service appointments, so you may need to take time off work. Your child may have to cope with multiple transitions and you may have to work and liaise with many professionals from the learning disability services.

All of these experiences may impact on the time you have to refuel, recharge and that can impact on your family’s resilience.

How can we help?

We can offer emotional and psychological support to parents of a child or young person with a learning disability. Parents/carer(s) are likely to receive this support from a Clinical Psychologist, who may offer therapy sessions. These sessions involve meeting regularly in a clinic setting to talk through their thoughts, feelings and understanding of their child’s diagnosis. One or both parents may attend, and if appropriate, the child or young person and/or any siblings.

At the start of therapy, the clinician will discuss what support they can offer you and create a goal-focused plan which will best suit your family. The clinician will draw upon a variety of psychological models (such as systemic psychodynamic and cognitive behavioural models) to support you to develop a number of skills and strategies.

This might include:

• developing coping skills around the impact your child or young person’s learning disability may have on you as a family;
• teaching problem solving skills, helping you to deal with stressful situations;
• challenging negative and unhelpful thoughts about your child or young person’s learning disability, your roles as parents/carer(s) and your outlook for the future;
• supporting you in developing helpful coping strategies and provide you with a confidential therapeutic space to help to strengthen your resilience and build hope for the future; and
• encouraging you to increase your access to social activities and expand your social networks.

Guidance and helpful information

Having a child with a learning disability has an impact on the whole family, and other relatives may also need support to deal with their feelings. There are lots of places you can go online to find information and support that might help you come to terms with your situation in your own time and we have provided links to some of those websites on this page.

Organisations such as Mencap can offer information, advice and services to people with a Learning Disability and their families. The child or young person’s siblings may find it helpful to access Young SIBS, a charity which helps brothers and sisters to come to terms with their sibling’s disability.

Talking to other people in a similar situation can also be helpful, and you can contact other families via Contact a Family who offer advice, information and support to the parents of disabled children and enable you to contact other families locally and nationally with similar circumstances.

Sharing your experiences with others can be valuable and very rewarding and can help to remind you that you are not alone.

Toolkits and Strategies

The following toolkits are available to support you to record behaviours, sleep patterns and other information which will be useful in assessing what the support a child or young person requires:

• Behavioural pack >

  This toolkit includes basic information and advice on behaviour. The pack will allow you to record information which is useful during a clinic assessment to allow the clinician to assess the help needed.

• Sleep hygiene information and sleep diaries >

  This includes sleep hygiene information sheets to give you basic advice for promoting healthy sleep patterns. We only support families with severe sleep problems but this information is useful for all families and children.  The sheets here allow you to record information on sleep patterns and approaches which will be useful for the clinican when you attend an appointment with us. 

• Independence pack >

  This pack includes a basic explanation of techniques which may be useful for a family and help to reduce anxiety. 

What happens next?

All requests for service are prioritised according to need and urgency, based on the information provided to us when the request is made. The urgency is defined by the service in discussion with the person who made the request for service and the child or young person’s family.

We aim to see all children and young people within 18 weeks of accepting the request for service. We will try, wherever possible, to start the assessment process prior to the first clinic appointment by asking parents/carer(s) or the child or young person to begin to record behaviours, sleep patterns and feelings where this is appropriate. This information will help inform our assessment.

Self referral

You can now self-refer your child into this service. For more information please view this guide on how to self refer.

For details of what the service supports and what supporting documentation you require for your referral, please view the request criteria page.

Who you might see

Learning disability nurses support people with learning disabilities and their families and carers. We help children and young people with learning disabilities to maintain their health and wellbeing and to live their lives as fully and independently as possible by providing advice and support. We also support healthcare and education professionals as part of our service.

The Learning Disability Team in Devon consists of:

• Clinical Psychologists
• Trainee Clinical Psychologists (under supervision)
• Assistant Psychologists (under supervision)