In Australia, around 10% of children have a physical, cognitive or mental disability or disorder. Over the years I’ve had the privilege of working with a whole range of these children and adolescents, for example those who’ve been diagnosed with:
a speech or language disorder or disability
autism spectrum disorder
a significant learning disorder or dyslexia,
a hearing or visual impairment
attention deficit/Hyperactivity Disorder
a chronic health condition leading to physical disabilities
and many others
For some of these children, their disability had a huge impact on nearly every area of their social, school and home life. For other children, their disability was relatively mild, or affected only one area of their life.
Supporting these children and teens as they overcome, cope (or struggle) with the various hurdles associated with their disabilities s incredibly meaningful and challenging work.
But in this article, I’d like to focus on not these children – but their parents.
There are nearly one million parents in this country with a child with a disability. Each of them have a story – stories of days with joy, sorrow and days with a great deal of pain. Some of these stories will tug at your heart, some will break it.
A review of several studies by Kulthau et al (2008) showed that parents of children with a disability experience significant higher emotional stress, physical health symptoms, greater financial stress and a higher number of relationship problems compared to parents with children without a disability.
In my work with parents, there are five key areas of distress parents with children with extra needs and challenges I typically hear about.
1. Grief and Sorrow
Grief is not just a reaction to a diagnosis but instead often a life-long experience for some parents of children with disabilities. Because children with disabilities – like all children - encounter new life stages and situations as they develop, their parents often experience fresh pain and sadness as they watch their child deal with new losses and challenges which arise in each new life stage.
Some research refers to this as “chronic sorrow”. Chronic sorrow comes and goes – with high peaks when children enter new life stages.
For example, I spoke this month with a mum who shared her sadness about her Year 7 child's very significant learning and communication disability. She had been especially sad recently as all the high school orientation activities he was doing was reminding her of the struggles he was likely to have in secondary school – and what this would mean for his friendships and learning.
Grief associated with a child’s disability is both pain and sadness about what they know their child will need to deal with/not be able to do/may face in the future, and also what their child has missed out on, hasn't been able to do, or has suffered in the past.
For example, a Dad told me once that images of his daughters' painful medical treatment (associated with her disability) played over and over in his mind when he tried to get to sleep at night. He was grieving not being able to have taken this suffering away from her.
2. Anger, jealousy, resentment and bitterness
Parents who have children with challenges sometimes report feelings of anger, resentment and bitterness.
They tell me about their anger and towards professionals who they believe don’t understand, who can’t help (or help very much), who might have misdiagnosed their child, at "experts" who assume that they are managing their child's disability the wrong way or the community/government at large.
I was talking with a family recently who are furious about the way their government/NDIS funding was managed. Whilst there were some valid reasons for their anger about this issue, our conversation revealed that their anger was also an expression of anger, bitterness and resentment they felt towards the “universe” about their daughter's condition. The NDIS was a convenient target.
Parents also share with me (sometimes with shame) their irrational anger at and jealousy of other families who don't have their challenges or who don't seem understand, and towards those who provide them with well-meaning quick or easy "advice". They know (intellectually) that all families have challenges but their pain in managing their own child’s issues makes it hard for them to not feel jealous.
One Mum I spoke to said she couldn’t face taking her child to kindergym because being there and seeing other children do what her child could not do made her feel silently but overwhelmingly envious of other families with children without her child’s disability.
Other parents’ I’ve talked with consciously avoid school award nights, sports days, campls, concerts and other childhood events because it is too painful for them to manage their own feelings of envy, anger or bitterness. This leads to the next source of distress.
3. Loneliness and a feeling of isolation
Parents of children with special challenges often feel – and are – more socially isolated than other parents.
Their child’s special needs might make it hard to have spontaneous outings, be in environments which don’t cater for their child or make time for social gatherings in between appointments and the extra time involved in caring for their child.
I spoke once to a set of parents who desperately needed some time with other adults, but their child’s intensive special needs meant the only free time they had was after 10pm at night. Another family told me about their inability to take their child to family gatherings or parties – meaning they were at home most of the time.
I should note that even when families are able to spend time with others, they often still feel isolated. Everywhere they look are “normal” children who don’t have the same challenges as their child. They don't talk to or see many families who are "like them". There are very few children with disabilities featured in the media, movies, posters or anywhere else.
This means often parents/caregivers feel: “I’m alone” – it is a sense of being without a community or people who are like them.
4. Stress, Worry and Fear
Parents with children with special challenges have a number of stressors they face regularly like. An important one of these stressors is financial - How will we afford/get to all their appointments/treatments/assessments?
One study found that one half of the increased distress experienced by mothers of children with a disability could be accounted for by how much financial stress they experienced.
As well as financial stress, parents/carers with children with disabilities also feel stressed about how siblings are coping, how to manage work and medical appointments and how to manage the relationship stress which comes with managing a child with special needs.
However, these worries pale in comparison to the most frightening fear of all: What will become of my child? What will they do? How will they cope? What will happen to them?
For example, I’ve listened to parents/carers in these situations:
Parents with children/teens with learning /attention disorders who are afraid for whether their children will “make it” through secondary school or be able to work, or what kind of work their children will be able to do.
Parents with children with ASD - who are worried for how they will make friends or have other relationships throughout their life.
Parents of children with various physical disabilities – who fear for their child’s ability to move from place to place, travel and work.
There is no fear quite like the fear you have for your child’s future.
Almost every parent I speak with a child with extra needs or challenges to asks themselves some version of these questions:
Did I miss it? Should have I known earlier?
Did I do something while they were babies/when I was pregnant to cause this?
Am I doing enough to help/support/change/cope with it now?
Would some other parent be doing this better/helping more/managing it better than me?
From an evolutionary or instinctive perspective a parents’ job is to keep their children healthy and safe. While parents can tell themselves “logically” it is not their fault - it still feels like we’ve failed.
Does any of this sound familiar?
If you are a parent of a child with special challenges and you experience grief, anxiety, worry, stress, anger, resentment and guilt, you should know this: all of these feelings above are normal.
How you go on to manage these experiences is another article entirely, but start by doing two things.
First, accurately label your different emotions when they occur.
You might experience a small or what seems to be a trivial trigger for a strong emotion. For example, your child missing out on a birthday party invitation because of their disability, not being able to read the latest block buster book, not being able to run in a sports day race - and your guilt, worry, grief, resentment, isolation or sadness might hit you with force.
When this happens, label your emotions accurately. The truth is you are not upset because your child is missing out on this particular event – you are feeling grief, worry, guilt, anger or sadness –(or whatever it is) because of your child’s challenges as a whole. Accurate labelling of emotion is helpful because it can help you know what to do – and what not to do.
Second, remind yourself: I am not alone.
With full compassion, and no sense of minimizing what your child is going through may I be bold enough to say this: It’s easy to be preoccupied with the challenges your child is managing, feel like the world has landed unfairly on your own and their shoulders and that there is a huge distance between you and the rest of humanity. In other words, it is very easy to feel very alone.
However, this preoccupation and sense of feeling alone is likely to make you feel worse.
When you feel this way, try to gently and compassionately remind yourself, you are not alone. There is a large community of parents – even in your school, local community and world who know exactly what it is like to experience all of these emotions as they watch their child with challenges navigate life. If you are able to notice them too, life is a little easier.
When you have noticed and labelled your emotion, and know you are not alone – you can then start to take a breathe and make a decision about how you want to handle that moment.
And handing that particular moment, many times is entirely all you can – and need to do.
PS. Share this article within your support system so it can give voice to your pain when you can’t quite find it yourself.
PSS There are two specific resources for families with children with special needs on Calm Kid Central. These are:
A video for your child with special needs (Autism, ADHD, learning disorders, physical disabilities) to explain to them that it’s okay to feel sad about their challenges and also that they are not alone (It’s called “Different Bodies, Different Challenges).
A brief article for parents called “Ten Sentences to Say to Myself When I’m Feeling Fragile About My Child’s Extra Needs”