What's in this section?

Family Support

Some families may need support to help them meet the needs of their child. This could take the form of a Family Support Program.

There are a number of different types of programs that deal with support for families of disabled children available. Some programs cater to all parents regardless of any additional needs the child may have, alternatively others are more targeted towards meeting specific needs.

These programmes can be delivered by a range of providers: some will be offered by your local council, and others may be delivered by other organisations.

Your local council should be able to tell you what programs are on offer in your area, find your local council here: https://www.gov.uk/find-local-council

Support for siblings

Explaining your child’s condition to their siblings

Siblings will need help to understand their brother or sister’s disability and also their own feelings about it. It can be difficult as parents or carers to divide your time and attention between your children when they have different needs.

Siblings of disabled children can often struggle with feelings of exclusion, jealousy and loss of attention. These feelings can be especially common when they’re affected by the changes in lifestyle their sibling’s condition may bring to the home.

There are some simple tips you can follow to try and make sure siblings of disabled children feel more involved and supported:

  • Try to be open with your child about their sibling’s condition from an early age, and keep them updated on progress.
  • Listen to your child about their feelings. Try to acknowledge both positive and negative feelings about their situation.
  • Give siblings the choice of whether they want to help with their brother/ sister.
  • Try to spend time with each child separately
  • Get family and friends to try and help siblings maintain their routines, including going to after school clubs or playing sports
  • Ensure your child knows they have a choice about their involvement in their siblings care in the future, and help them understand their sibling’s options.

Organisations like SIBS exist to support people who grow up with or have grown up with a disabled brother or sister.

Grandparents and extended family

Keeping the lines of communication open with grandparents and extended family is really important when your child has an additional need. This is especially true if they play a role in childcare sometimes. We have resources, guidance and friendly tips to help you achieve this.

A common source of support for the family may be the child’s grandparents and, for many parents, they are the people to whom they feel most able to talk through problems and frustrations.

Be prepared for people to not understand

Often grandparents and extended family have difficulty in adapting to a child with disabilities and may either:

  • attempt to deny the reality of the disability
  • or to reject the child.

Both of these can lead to a breakdown in the relationship between parents and family.

Some ways to try and prevent this could include:

  • Organising an appointment with a health professional for the grandparents/ family members to discuss concerns and allow them to learn about the implications of the child’s disability or additional need in a safe space where they can express concerns without fear of upsetting the parents.
  • Sharing web links or printing off advice on your child’s condition can also help, particularly if the people you’re talking to find it hard to accept that your child is disabled.

The more people understand the more they can help you. Talk about what your child’s condition means in real terms, how this affects your child in everyday life, and what specific things they can do to help you.

Mental health

Looking after the mental health of every family member is important. There are resources to help parents and carers support their child through times of difficult mental health, in addition to resources to help parents look after their own mental health too.

Mental Wellbeing

The NHS describes the 5 steps to Mental Wellbeing as:

  1. Connect with Other People – Building relationships to help give you a sense of belonging and provide you with emotional support.
  2. Be Physically Active – Regular exercise, even simple activities like running or jogging help to raise self-esteem and improve your mood through the release of endorphins into your bloodstream.
  3. Learn New Skills – Trying something new can boost your self-confidence and help you to connect with others.
  4. Give to Others – Small acts of kindness such volunteering can improve your mental health by creating positive feelings and offering you a sense of self-worth.
  5. Pay Attention to the Present – Focusing on the here and now instead of worrying about the past or future can improve your awareness of the world around you. It can also allow you to better enjoy life.

For more information on the 5 Ways to Wellbeing and more things you can do to improve your mental health, see their full article.

Coping with Stress

Stress is the feeling of being under too much emotional or mental pressure. Stress often occurs when we think a task is too much for us, or when we are stuck in a difficult situation we can not change. Long term stress can be harmful to both mental and physical health.

The first step to coping with stress is to recognise when you are getting stressed. Understanding what causes stress will, in turn, allow you to better manage situations that create it.

Some tips to reduce stress are:

  • Plan your time sensibly – trying to do too much will only cause you to become stressed when you don’t achieve everything you set out to.
  • Prioritise – pressing tasks can often seem more important than they actually are. Recognising when a task isn’t actually that important can reduce the stress of trying to get it done.
  • Learn to Say NO – understand your limits, and be assertive. If someone is trying to get you to do something which isn’t important when you have something more urgent to deal with, be firm and explain why they’ll have to wait.
  • Learn to let go of resentment, and forgive others – holding onto resentment caused by others doesn’t help your mental state, and will only make focusing on more other matters more difficult.
  • Don’t keep things bottled up – express your feelings and tell family or friends if you are struggling with something, sometimes just talking a problem out helps us deal with it.

Types of Support

Types of mental health support for families of disabled children can include:

  • Counselling
  • Support helplines
  • Respite care
  • Parent support groups

For parents

Parenting comes with lots of challenges. It can be even more difficult if you’re dealing with mental health problems. These can affect their ability to cope with family life, so it’s important that parents and carers can find support when they need it.

The most common types of mental health problem experienced by parents with disabled children are depression and anxiety disorders.

If you find yourself experiencing one or more of the following, it may be advisable to talk to a trained counsellor or health care professional:

  • Mood swings
  • Difficulty recognising your child’s needs
  • Regularly struggling to keep to routines including mealtimes, bedtimes and taking your children to school.

Organisations you can talk to that offer mental health support and advice include:

Pets

Owning a pet can be a great support for families with disabled children, but adding a fluffy member to your family is a big decision in terms of money and time. Services like Dogs for Good can support families to make the right decision. They also offer workshops to help with dog training and handling, in addition to assisting long-term so that a pet benefits the whole family.

See Family & Wellbeing Articles

Sociable Life Website - interactive activity map

Sociable Life launches

My Family, Our Needs loves bringing you new websites and apps that we think will make your life easier and our latest one is no exception. In fact, we think
Read More »

PDA Action Day 2018 - words used to describe people with PDA

PDA Action Day 2018

It is PDA Action Day 2018 and the PDA Society is undertaking a number of events to raise awareness of PDA amongst healthcare professionals.   PDA Protest PDA Society has
Read More »

The MFON Christmas Gift Guide

Stuck for gift ideas? Worry not, My family Our Needs is playing Santa! We have compiled this list of great Christmas presents for children with additional needs, from little ones through
Read More »

Breastfeeding a baby with a cleft

Breastfeeding a baby with a cleft

As it’s World Breastfeeding Week, we thought we’d explore how breastfeeding works for a baby with a cleft. And if that’s not possible, what the alternatives are. We asked the
Read More »

 
1 2 3