Everyone knows that parenting is stressful.
From crying, to nappy changes at midnight, tantrums, general disobedience – and how can we forget the teen years?
What’s more we get no training manual, simply advice from fellow parenting colleagues, our own parents and the internet if we dare to look. Parenting is stressful!
What happens however, when a parent discovers that their child has a disability? Does that stress increase? How does parenting change?
What is a Disability?
According to the Disability Discrimination Act 1992, the definition of a disability is quite lengthy. It refers to a:
- Total or partial loss of bodily or mental functions;
- Total or partial loss of a part of the body;
- Presence of organisms causing disease or illness;
- Malfunction, malformation or disfigurement of part of an individual’s body;
- A disorder or malfunction that results in the individual learning differently from a person without this disorder or malfunction;
- A disorder, illness or disease that affects a person’s thought processes, perception of reality, emotions, judgement or leads to disturbed behaviour.
The definition of disability, includes those that:
- Currently exist.
- Previously existed but are no longer present.
- May exist in the future.
- Is thought or implied that the person has the disability but does not.
As you can see this is a wide range of conditions. A person with a disability may be born with the condition, they can acquire the disability (through illness or accident), it may be genetic or it may be caused by an infection, it could be seen or it may be unseen. This includes disabilities such as autism, intellectual disability, blindness, epilepsy, spina bifida, ADHD, hearing impairment and down syndrome, just to name a few of the well-known ones – although thousands more exist.
It is a little difficult to get statistics exclusively for children and families, but perhaps considering the overall prevalence might give you some insight:
- 1 in 5 people in Australia have some sort of disability (remembering our above definition);
- 1 in 8 (12.5%) of Australians aged under 65 live with a disability (this increases for over 65); and
- 35.9% of Australia’s households include at least one person with a disability.
Finding out about a Child’s Disability
When a parent finds out about their child having disability, it is normal for a state of grief and loss to occur.
Whether it occurs before your child is born or while they are growing up (with an assessment like ADOS, for example). as a parent you have had hopes and dreams for your child from the day they were conceived or taken in. It is normal to experience this sense of loss, that these dreams might no longer be possible at this point.
In some situations, the parent might start to blame themselves for the disability: Did they do something wrong? Could they have prevented it? All questions that will start to stream through their head as the process of grieving starts.
This is normal and it is important to take the time to grieve. Remember this is a time to process what losses have occurred and what is still possible. In time, you may come to the realisation that your son or daughter can still go on to compete at the Olympic/Paralympic games if they are capable, or you may have to reach that point of acceptance that your child will be in full-time care for the rest of their life, but you need to take the time to mourn what has been lost.
How does Parenting Change?
At its foundation, all parenting has the same theoretical underpinning. We encourage and reward those behaviours we want to continue seeing and there are negative consequences (eg removal of toys, or time-out) for behaviours that aren’t desired.
When it comes to children with disabilities, it really depends on the disability (and the child!) as to how long it will take to learn. For some eg children with blindness or amputations, little adjustment may be needed.
On the other hand, for children with other disabilities such as developmental disorders and those involving severe intellectual disability, challenges will be involved as this learning process takes a lot longer.
When it comes to parenting we don’t just look at behaviour management, but also the teaching of everyday skills – those that people without disability take for granted, such as eating, showering and general self-care. Again, this depends on the disability, for some it is learned quite quickly, for others it requires a lot of time and effort, and in some the skills are never really mastered with a parent or carer taking on these tasks for them.
Regardless of what we are trying to teach a child with a disability, there are some important things to remember:
- What are your expectations? Is your child capable of the behaviour or task you are expecting? For example, a child with ADHD isn’t going to do well sitting doing homework for an hour without a break, nor will a child with an intellectual disability respond well to a board game that is beyond their level of understanding.
- Make instructions simple. Those that are too complex will not be understood and will result in either frustration from the child, or the child ignoring the instruction.
- Model the behaviour. Show them how to brush their teeth or how to play with the toys gently.
- Routines. Routines are important for all children, but this is especially important when they have a disability. It makes your life easier and the child knows what to expect.
- Remain calm and be patient! It may take some time for them to get the hang of it.
Taking Time Out for You
Parenting a child with a disability is indeed more stressful and more intense than what the average parent experiences.
In fact, research has shown that parents of children with a disability are more likely to develop mental health difficulties. Factors contributing to mental health issues may include the intensities of caring for a child with disability, financial stress, difficulties accessing employment, and finding appropriate childcare facilities, to name just a few.
Additionally, parents may be so focused on giving attention and care to their child, that their own mental health and wellbeing becomes secondary.
As much as you may be stretched for time, it is important to take time for yourself. Now I can see you glaring at me thinking: I can’t leave them, I don’t have time, who will?! Please note, taking time out doesn’t necessarily mean taking a whole day out. It may be that all you can spare is 30 minutes for a cup of coffee and a magazine.
Take an hour every week to talk to someone! Be it a friend or a therapist, unload about your week, the successes and the challenges. What is important is that you look after yourself, as that is how you will find the patience and emotional strength to move forward through the challenges every day.
Author: Sharyn Jones, B Psych (Hons).
Sharyn Jones is a Brisbane psychologist with 10 years of experience working with adults, adolescents, children and their parents. Using a combination of cognitive behavioural and solution focused therapies, she aims to facilitate positive changes in client’s lives so that they can achieve and obtain their desired goals.
To make an appointment with Brisbane Psychologist Sharyn Jones, try Online Booking – Wishart. Alternatively, you can call Vision Psychology Brisbane on (07) 3088 5422.
- Gilson, K. M., Davis, E., Johnson, S., Gains, J., Reddihough, D., & Williams, K. (2018). Mental health care needs and preferences for mothers of children with a disability. Child Care Health and Development, 44(3), 384–391