In Australia, around 10% of children have a physical, cognitive or mental disability or disorder. This means as professionals who work with children it is very likely we will have worked with hundreds of children/adolescents 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
Supporting these children and teens – in clinics, at school, extra-curricular or in home settings- as they overcome, cope (or struggle) with the various hurdles associated with their disabilities is incredibly meaningful and challenging work. It makes us think harder, work harder and be more creative, compassionate and persistent than when we are working with children without these disabilities. Despite its challenges – I love this work.
But in this article, I’d like to focus on not the work we do with these children – but how we work with 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 joy, sorrow and a great deal of pain. Some of these stories tug at our hearts, some break them. This is not an easy road.
A large review of 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.
There are five key areas of distress parents with children with extra needs and challenges typically tell me about in my work with them. These are listed below.
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 encounter new life stages and situations as they develop, parents of children with disabilities or disorders often experience fresh pain and sadness as they watch their child deal with new losses and fresh 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 of children with disabilities can and do tell themselves “logically” it is not their fault – it still feels like they’ve failed.
Working with parents of children/young people with disorders or disabilities
Here are 8 ideas for how to work effectively with this particular group of parents.
- Be empathic. Even if our primary role is not about providing emotional or psychological support to parents themselves, showing a warm, caring and empathic response when parents/carers report their child’s (or their own) challenges and struggles can be extremely powerful. Simple sentences (I’m sorry you have to manage that, that sounds tough) help encourage ongoing communication and allow parents/carers to have trust in the work we are doing with their young people. I think we under-estimate the positive legacy we leave in families’ life when we do this well.
- Ask questions. We need to be regularly asking parents/carers of children with disabilities for their opinions, input, advice and thoughts about their child – and how they’d like us to work with them. While we are experts on young people in general, parents/caregivers are the expert on their child (and often their disability). Regular sessions/emails/conversations in which we ask questions (what is your opinion/how can I help/What should I know/ what is improving/what is deteriorating and so on) not only expresses respect, encourages collaboration, improves parental responsibility taking – but often gives us helpful information as to how to work with their child/young person.
- Provide objective and specific feedback on a child’s areas of challenge and struggle. When working with children with challenges it is tempting to avoid providing negative feedback to parents/caregivers about their child – either to protect ourselves from a parents’ potential disappointment/frustration or to avoid further demoralizing a parent who clearly has a lot on their plate. Unfortunately this is not helpful for the family long term. Parents without a full picture of their child’s challenges and strengths can’t effectively help their children. Providing regular, objective, specific feedback in a neutral and caring way (I notice that….compared to other children he/she…..I’m wanting her/him to work on…..) to their parents and caregivers is often one of the most important ways we support the child/young person. We should obtain permission from parents/caregivers to do this right from the start in working with a child/young person (I’d like to….is that okay…), explain why and how we will do it, do it early in working with a child, and then do it often.
- Provide positive feedback about a child’s progress and strengths. Although parents of children with disabilities need information about their child’s challenges and struggle, they also need hope and encouragement. Many parents have fallen into a state of “learned helplessness” about their child with challenges (see research on the interaction effects between a permissive parenting style and challenging behavior as just one example of this). When we provide positive feedback about a child with challenges we interrupt this cycle and assist a parent/caregiver to have the energy make positive changes. It is not always easy to find areas of strength for some children but even short comments about small gains (he’s doing a great job of….I admire her for…I wanted you to know I see changes in….compared to some other children he/she…..) can mean a great deal to some parents who don’t hear positive feedback often.
- Avoid minimizing or dismissing a child’s challenges or parents’ concerns about challenges. We work with children with a range of disabilities and challenges, with some children experiencing more severe challenges than others. Because we see “the most severe”, at times it feels as though some parents are “helicoptering” or even exaggerating their child’s more minor challenges. Unfortunately when we make comments which minimize or dismiss parental concerns (…lots of children have…they’re okay …other children have many more…) we are at risk of getting it very wrong. I’ve learnt the hard way that children I’ve worked with in only one context or for only a short period of time – and who look like they are doing okay in this context – often present very differently at home. I’m ashamed to say that at least on one occasion I’ve only fully understood what was happening with a child when their parent brought me video of their child’s particular challenge emerging in a home context. Even when a parent does appear to be overly anxious or distressed about their child’s challenge – often this is the only way they know to express the distress they feel. Minimizing or dismissing their concerns does not improve our working relationship with them.
- Address unhelpful parent behaviours. However, avoiding minimizing or dismissing parental concern does not mean ignoring unhelpful parent behaviour. There are times when parents are doing (or not doing) certain things which we can see are unhelpful for a child or young person. Most of the time, part of our role as professionals in working with these young people is to ask, coach and help parents/caregivers to act in ways which support the child’s wellbeing and development. Doing this effectively requires lots of tact, honesty and care. In my experience, just like my work with children themselves, it works best when we are gentle, calm and specific with parents (how can I help you do X with your child/young person, rather than “you need to stop Y”).
- Support parents to communicate with a range of health, social and educational professionals where possible. Children and young people achieve their best outcomes when their family (not just the child themselves) access a range of supports. Anything we can do to facilitate this process – communicating with other professionals ourselves, providing assistance to parents to communicate with other professionals or referring families to access the right supports – is often extremely helpful.
- Don’t take anger/disappointment personally. Working with children means we will sometimes have parents/caregivers express frustration or disappointment about our work or decisions. While this is always hurtful, frustrating and disappointing (especially when we feel we are doing everything they can for a child/young person), it’s important to keep reminding ourselves that for parents/caregivers of children with challenges or disabilities – this anger/disappointment is often grief in disguise. At least some of the time the underlying negative emotion is not about us – nor even about the (what seems like) the trivial issue at hand – this is a fragile human being managing their distress the only way they know how. I find this an important reminder to help me continue to be empathic, kind – and honest – with these parents.
Although working with children/young people directly might form most of what we do, spending even just a few minutes regularly doing one or all of the above with parents is often even more valuable than the work we do with children themselves.