Family perspectives

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Hear some family perspectives on what life is like for children with a disability and their families.

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Frequently asked questions

  1. How does having a child with a disability affect families?
  2. How is everyday life different from that of other families?
  3. How do siblings feel about having a brother or sister with a disability?
  4. What do parents expect from schools?

1. How does having a child with a disability affect families?

All families are different, and having a child with a disability affects each member of the family differently.

Disability has an impact on all aspects of family life, including daily routine tasks and finances, education, employment, health, housing, recreation and relationships. Life is often unpredictable for families of children with a disability and it can be difficult to plan ahead.

Families are often in the process of acquiring a range of equipment, services and therapies as their child’s needs change. This is an ongoing process and can take up a lot of time and energy.

A family’s ability to respond and adjust will depend on a number of things, such as the overall level of demand placed on the family, how much daily assistance their child needs, behavioural issues, external issues such as finances, and each family member’s individual resilience. The impact of these on family life will depend on the availability of formal and informal resources and support.

Parents of children with a disability often experience a wide range of emotions, particularly around the time of diagnosis. The depth and complexity of these emotions is a challenge for all parents. Some of these challenges are outlined in the following article Elite Parenting: Mother, father, siblings and children adapting to disability.

Parents can often benefit from opportunities to talk to other families in a safe and supportive environment. This can be as simple as talking to another parent over the phone, catching up for a coffee, or joining a group.

For parents seeking professional counselling services, Carers Victoria provides a free ‘Talk it over’ Carer Counselling Program for carers, including families of children with a disability.

Despite all of the challenges, families of children with a disability can also experience plenty of hope, pride, and joy.

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2. How is everyday life different for families of children with a disability?

Meeting the needs of a child with a disability is usually more demanding than for typical children of the same age.

Routine daily tasks are often more difficult and time-consuming because children with a disability often need more support. This can continue well beyond the typical age for independence.

Some families have lots of appointments with doctors, specialists, therapists and disability services. Dealing with these can be tiring, frustrating and time-consuming.

Some children with a disability need surgery, medical procedures or have conditions that result in emergency hospitalisation. These events are stressful and disruptive to the lives of all members of the family.

Attending or organising a Family Perspectives on Disability presentation run by our Association is a good way to gain more insight into what life is like for families of children with a disability.

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 3. How do siblings feel about having a brother or sister with a disability?

It is common for siblings to have a range of feelings towards their brother or sister with a disability, including:

  • love
  • pride
  • admiration
  • protectiveness
  • responsibility
  • embarrassment
  • sadness
  • anger
  • jealousy
  • guilt
  • shame
  • anxiety

Siblings can also develop increased compassion and understanding of those with differences. Many siblings enjoy the opportunity to meet with others in similar circumstances.

Siblings often have extra responsibilities over and above that of their peers which may impact on their learning. Their home lives are somewhat different from that of a child without a brother or sister with a disability. For example, siblings of children with challenging behaviours may find it difficult to complete homework in a quiet place.

Overall, the experience of growing up with a sibling with a disability is unique and all siblings can benefit from greater understanding and guidance.

For more information about supporting siblings see our Growing Together resource.

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4. What do parents expect from schools?

Parents of children with a disability have the same hopes and dreams for their children as other families. This includes opportunities for their child to learn and achieve to the best of their potential, to be safe, and to experience acceptance and friendship.

Parents want their child to be included in classroom activities as well as excursions and other experiences. Most parents of a child with a disability are aware that their child may learn differently and at a different rate from others, but they are also aware that their child can achieve and they want their child to have opportunities to learn, succeed and progress.

All parents want the best for their children. Parents of children with a disability will often do everything they can to get the best help and support for their child.

First and foremost, parents of children with a disability want someone to listen and truly understand their individual needs and circumstances.

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Parent story: What keeps me going

I’m the mum of two school aged boys on the autism spectrum. I have one at a special school and one at mainstream. What keeps me going? Some days I think it’s adrenaline and chocolate. But in reality, it’s having people around me who support me when I need it. I’m lucky to have a network of support which includes family, friends, work colleagues, therapists and a fantastic support group.

My husband and I have a real partnership and when things get too much I can take some time out for myself — I like to call this retail therapy but my husband calls it spoiling the children. My parents are always there for me and they help out by picking up the kids after school one night a week and sometimes they have one of the boys stay for the night. It’s amazing how the household transforms into an almost tranquil existence when a child is missing.

I have a couple of close friends who provide a sympathetic shoulder to cry on when things get tough and their children are fantastic role models for my socially challenged kids. Work is something that also keeps me going. Those hours at work take my mind off everything else for a while and give me some adult interaction. It also keeps me away from the shops. Working would be impossible for me though, without the support of family and friends to help out when I need it. I have also found many services extremely helpful.

I know that school is often a hot topic amongst parents of children on the spectrum and I have experienced both a special setting and mainstream. I have to say that while the differences are huge, there are positives and negatives to both. Having a good relationship with the schools, however, has made it much easier to deal with any problems when they arise. In the early days following diagnosis, I began on a journey for answers, as I’m sure many parents do. Some questions have been answered, such as, will my son ever say I love you mummy? And some I will have to wait a little longer for, such as, will he drive a car, find a partner or live independently? Some questions may never be answered, such as, why?

I remember when my first son was born, my mum used to tell me that motherhood is the hardest job in the world and you are given it with absolutely no training. I doubt though, that any training could prepare you for raising a child on the spectrum. While this is something I would not choose for my children, I would not change them even if I could.

Parent

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Parent story: The sib way

I don’t remember being told my brother had a disability, he just did.

I was five years old when my brother was born and all I remember is the excitement of getting ready to go and visit him. I have no memories of my parents finding out about his disabilities or of any grief around that time. I was a proud big sister and I didn’t know any different.

In primary school I had a harder time. My brother often came to assembly, as other younger brothers and sisters did. He often made a lot of strange noises. I used to hear other kids talk about that ‘spastic kid’ over there. It really upset me but they weren’t my friends so it didn’t matter too much. Most of my friends in primary school just knew about him, I didn’t really tell them nor did I feel a need to. I guess that’s just how it works when you’re little.

From early on, I did things in my own ‘Sib’ way without even realising it. In Grade 4 I remember choosing to do a speech on braille, probably because at that time my brother had difficulty with his eyesight. But not all of my writing as a Sib came out in such a positive light. In Grade 6 I wrote, ‘Living with my brother is hard. I don’t like to go shopping with him because people stare at him and I get embarrassed. Everyone else has normal brothers and sisters.’

For as long as I can remember, I have been able to explain my brother’s disability, technical terms and all. He has agenesis of the corpus callosum, meaning that the fibres that connect the left and right sides of his brain are not there. This has meant that his is severely intellectually, and somewhat physically, disabled.

The difficulty of not knowing what to tell people about him increased as I got older. I began to realise that people felt uncomfortable because they just didn’t understand or know how to react. Most people just don’t want to offend me by asking questions. Once I tell someone about my brother, I can tell that they have a million questions in their head, and I just tell them to ask me.

In all, a sibling experience is quite different from that of parents and other family members but I think it’s equally important. Being a Sib has changed my life in so many ways − some good and some not so good − and probably in ways I can’t even recognise. At the same time though, it’s the only life I have ever known and I wouldn’t change it.

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