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What does your family need?

Key Message

Your child’s wellbeing depends not only on what you do to support their development but also on the wellbeing of the family as a whole. It is important to make sure that the needs of other family members and the family as a whole are being met.

Families of children and young people with global developmental delay face challenges that may seem exceptional and different from those faced by other families. The needs of the child or young person with disability may seem all important and take precedence over all others, distorting family life and family priorities. This is not good for the child or young person with disability or the family. All children, including children and young people with developmental disabilities, depend for their wellbeing and development upon the wellbeing of the family as a whole. 

family need

How to look after yourself and your family

Here are some key points for you and those who support you should keep in mind when considering how to support the family’s wellbeing. 

  • Families of children and young people with disability have the same core needs as all families
    This is a key point. Although families of children with global developmental delay may face extra challenges, they have the same core needs as all other families. These include basic needs for a regular income, secure housing, adequate food, and safe local environments. They also include having access to the same local facilities (shops, libraries, parks) and services (maternal and child health). They also include relational support – from parents or extended family members, from friends and community.For a variety of reasons, families of children with disability can have difficulty having these needs met. One partner may be unable to work or get out much because of the care needs of the child, or there may be financial strains, or the family may be socially isolated. It is critical that the core needs of families are not overshadowed by the pressing needs of the child or young person with disability.
  • Having positive support networks – family and friends, other parents of children with disability – is critical for family wellbeing
    Parenting a child with developmental disabilities can be demanding, physically and emotionally. To be able to provide consistently responsive caregiving for their child, parents need some responsive caregiving for themselves. They can get this from many different sources – partners, family members, friends, and other parents of children with disability – it doesn’t matter where it comes from as long as they get ongoing support from somewhere.Not all families of children with disability want or need to build entirely new support networks – their own family and friends may provide them with all the support they need. But many families find they gain much from meeting and talking to other parents who also have a child with disability. Parents may find they can talk much more freely to them. Parent networks such as My Time groups provide the opportunity to meet and share with other parents.Whatever your preference, building a positive support network should be priority for your family.
  • Consider the needs of the other family members
    It can be easy for parents to become preoccupied with the needs of the child who has a disability. It is important not to neglect the needs of other family members, including the parent’s own needs. A child with a developmental disability is actually better off when the needs of all members of the family are being met.It is important that the other children in the family are not neglected. They also need your attention and time, and opportunities to explore their own interests and friends. It is also important that your own needs and those of your  partner are also considered when drawing up plans and establishing priorities.
  • Consider the needs of the whole family
    As well as considering the needs of individual family members, it is important to think about the needs of the family as a whole. What does the family enjoy doing together – at home, on weekends, or on holidays? There needs to be some family activities that everyone enjoys and can join in.
  • Establish manageable routines
    All families thrive when they have routines that work for them, and all children thrive when they have consistent routines – regular playtime, mealtime, bathtime and bedtime routines during the week, and familiar activities at weekends. Children with global developmental delay and their families are no exception to this. For some such children, predictable routines are particularly important, as they are made anxious and unsettled by unpredictable changes in routine.
  • Manage demands
    Families of children with disability often face additional demands, caring for the child and managing their appointments. Families need to manage these demands so they do not become overwhelming. Services are naturally keen to see children make progress, and may want you to do all sorts of extra activities or exercises that add to the demands on family time. Do not let services make too many demands of you – learn how to assert your need for a manageable workload.It is also important that your do not to set yourself a pace that you will not be able to maintain. When parents first learn about their child’s disability, they may throw themselves into efforts to promote their child’s development. But having a child with a developmental disability is a long-term exercise, and parents cannot sprint the whole way. If you can learn to recognise your limits – what you can manage and what is too much to ask – then you can find a pace that works for you and your family.
  • Physical and social community environments that promote inclusion
    Having local facilities (such as libraries and swimming pools) that know and accept your child is important, for your wellbeing as well as that of your. If there are potential problems in having your child access local facilities – because of their physical conditions or behavioural challenges or other factors – talk to the staff about how these can be met.
  • Prompt access to specialist services that help families meet their child and family needs
    Services such as early childhood intervention services can play important roles in the lives of children with disability and their families. They can provide emotional and practical support, and help families learn how to meet the needs of the child and family. The earlier such help is available, the better, both for the child and the family.

Every child and every family is different. Your feelings as you take the journey from noticing your child may have a delay, to diagnosis, and beyond may also be different from that of other parents. There is no right or wrong way to feel.

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Early Childhood Intervention Australia (Vic/Tas). What is early childhood intervention?

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Practitioner Family-Centered Practices for Working With Families

Supporting Family Member Informed Decision Making

Involving Families in Obtaining Supports and Resources

Family Capacity Building in Early Childhood Intervention

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Solomon, A. (2013). Far From The Tree: Parents, Children and the Search for Identity. London, UK: Chatto and Windus. 

If you feel distressed thinking and reading about this topic,
talk to your GP or health professional. You can also call Lifeline on 131 114.