Being the parent of a disabled child can be hard, even if you and your partner have a strong relationship.

Talking about how you feel

Your feelings may change – parents sometimes talk about being on an emotional rollercoaster. Some parents start by feeling denial, anger and grief. It’s also common to feel lonely and sad.

You may develop ways of coping and feeling more positive. You may also feel less positive for a while if something changes in your child’s life.

Good communication can help you and your partner understand each other’s feelings. This can be important if you spend a lot of time apart, such as if you are providing full-time care at home and your partner is away. It’s easy to become irritated with each other but there are ways to avoid this:
  • try to set aside some time to talk
  • focus on what you think will help you and your partner
  • think about what brought you together in the first place
It’s easy to see yourself as just parents of a disabled child. But we all have hopes and expectations as individuals, partners and as families.

You could talk about how you feel and how it is affecting you. Try not to focus on what your partner does or does not do.

Some things you might say:
  • “I feel really sad and upset when you stay away. I find it really hard dealing with the children by myself. The children need to see that you’re part of our family.” 
  • “I feel alone.”
  • “I feel down.”

Getting support from other parents

Talking to other parents who are going through similar challenges might help you and your partner to feel less alone.

Going to medical appointments

Medical appointments are a chance to make decisions about your child together. Going together means that you can both listen and ask questions. This can help make you feel you’re part of a team.

Doing things as a family

Spending more time together can help. You do not need to spend a lot of money. You could go for a walk or visit family and friends.
  • The Rough Guide to Accessible Britain has listings of accessible days out. The guide is free to blue badge holders.  
  • DisabledGo provides online access information to more than 90,000 venues across the UK and Ireland. 
  • WhereWeCanGo has a search facility to find wheelchair accessible events. 
  • Euan's Guide lists information about accessible toilets, wheelchair access, hearing loops and other access features of venues across the UK and beyond. 
  • Direct Enquiries lists accessible toilets and other facilities in your area.
  • Our online community has tips on days out and suggestions for accessible holidays.
If you have other children, ask your partner to help them with homework or to play sports. This could help your partner be more involved and make siblings feel valued. 

Part-time and flexible working

Flexible working can help you to have a better balance between work and home.

Some parents find it difficult to tell people at work that they have a disabled child.

By law, you do not have more rights to flexible working as a carer. But you have the right to ask your boss for flexible working if you’ve been working for the same employer for 26 weeks or more.

Show your employer how flexible working is in everyone’s best interests. Recruiting and training new staff can be expensive.

Flexible working (Carers Trust)

Getting help with care

Finding someone you trust to look after your child can be difficult. You may be able to get respite care if your child has a diagnosis.

Your local authority can assess your child and your family to see if you need respite care. The local authority can arrange and pay for care, or give you a Personal Budget.

You can use ‘direct payments’ from your personal budget to pay family members to look after your child.

Care support on holiday

  • Local hospices sometimes provide care for children with life-limiting conditions when they are well enough to go on holiday.
  • The Disabled Holiday Directory lists organisations and venues that cater for disabled people, including supported overseas holidays.  
  • Tourism for All UK (TFA) provide information about places where care is available.
  • Disaway Holidays is a charity that organises group holidays for physically disabled people over 16 and provides a helper for one holidaymaker to assisting with washing, dressing and toileting.
  • The Calvert Trust runs outdoor adventure activities in the countryside for disabled children and adults, along with their families and friends, to fulfil their potential.
  • The Jumbulance Trust is a small, national charity which runs subsidised coach holidays for disabled people across the UK and Europe.
  • Phab Clubs Wales create opportunities for children and adults of all abilities to enjoy life together by supporting a network of 11 clubs throughout Wales, offering activities and holidays that members can share and enjoy together.
  • Search SENDirect for services for disabled children and young people in your area.
Direct payments (Carers UK)
Apply for short-term care for your child from your local council (gov.uk)

Help with extra costs

As well as benefits, some organisations offer grants to families with disabled children to go on holiday.

Search for grants.
Check what benefits you may be entitled to.

Looking after your child together

Caring for your child together can be quality time, although making time to do this when you’re working can feel difficult.

If you’re the person who normally does bathtime, try to share this with your partner when you can. This gives you time to chat together and support each other.

Call our free helpline