What life is really like for the parents of children with special needs once they grow up.

The dream of empty-nesting one day is exactly that for many parents. When you continue caring for adult kids struggling with their mental or physical health, retirement looks very different. So it is any wonder that these “unofficial carers”, who for the main part are unrecognised, emotionally exhausted, and financially compromised, find their own health impacted?

According To Carers Australia NSW, ‘Carers often ignore their own health and are 40 per cent more likely to suffer from a chronic health condition. Some health problems, like back problems, anxiety and depression, can be directly linked to caring.’

And perhaps the hardest part of their job is the fact that their work goes unrecognised. Particularly in the case of parents whose kids’ needs don’t warrant government support. Because while many people assume that kids grow out of conditions that start in childhood, such as autism, ADHD, and bipolar disorder, they don’t – and while some learn to manage their symptoms and function well in society, many can’t.

As parent Kirsty Russell, from Positive Special Needs Parenting admits: ‘Another constant worry is what will happen to our son once we’re gone. As his biggest advocate, supporter and carer, it’s confronting to consider what may happen to him as we age. The need to plan for contingencies lies heavy on us, as it does with all special needs families.’

Even with the best support in the world, mental health conditions such as these and the long-term effects of alcohol and drug abuse can have a lifelong impact on sufferers and their families. Depression and anxiety are common co-morbidities of conditions such as ADHD, and seem almost inevitable after a history of bullying at school, discrimination, and lack of equal opportunities.

Vanessa Cranfield on parenting a child with a disability. Post continues after video. 

Government support is limited unless they require hospitalisation or residential care; hence, many of these young adults remain dependent on their parents for somewhere to live, to help keep them financially afloat and their emotions in check, or simply off the streets. In other words, their parents become their “unofficial carers” – even though coping with the mood swings, cries for help and general worthlessness of a young adult in distress is a path no parent visualises when they start their family.

But what choice do these parents have?

Understandably, many parents in this situation turn to therapeutic help to alleviate the stress and to build resilience for the challenges.

Psychologist Debra Lawler from Berry and Reynolds Psychology sees parents such as these on a daily basis, each coping with the hardship and the stigma attached to caring for an adult dependent with mental health issues. She witnesses firsthand how the responsibility wears down the personal health and resilience of these unrecognised carers.

She says: ‘There is often a feeling of guilt for the parent, due to a disproportionate sense of responsibility for their adult child’s distress – while the reality is that there are so many influences that impact throughout our children’s lives. This guilt however can prevent the parent from believing they also have the right to look after their own physical and emotional needs, such as social contact, leisure activities, exercise and good nutrition’.

Louise’s situation is typical. Now in her mid-twenties, her daughter still struggles with anxiety and depression, and like me, Louise acknowledges that her career has been compromised to support her needs. She identifies with that catch 22 situation of feeling caught between the anxiety caused by being permanently on call versus the stress of not hearing from her daughter.

Listen to Vanessa Cranfield’s raw description of raising Gretel on No Filter. Post continues after audio. 

She says: ‘Although our daughter now rents her own apartment, (which we fund), the stress of constant messaging from her about her lack of hope in life – which demonstrates the state of her mental well being, and yet contrasts so strongly with our once successful visions of her future – affect every member of her family. The financial implications are also draining. We don’t want to put her out on the streets and back into dangerous situations that she struggled with (and escaped from) in the past, but it is a balancing act to care deeply, and still maintain a sense of self for the sake of rest of the family’s well being.’

Needless to say, self-care is a vital component for survival for these parents. Carving half an hour out of each day to dedicate to their own wellbeing can make a marked difference to their long-term mental and physical health. Exercise, a hobby, meditation or simply a long, hot (uninterrupted) bath can help alleviate the stress. Additionally, there are government-funded bodies in each state – for example, Carers Australia NSW or even your local library – which offer a range of state-funded or subsidized support services and activities from counselling and community support to education and training.

The love of a parent for their child is unconditional and while the future of “unofficial carers” is less certain than for other parents, our work is also highly rewarding. But to navigate the stresses that come with any “work” – particularly unpaid work – it is important to remember that, in the words of Christopher Germer, “Self-compassion is simply giving the same kindness to ourselves that we would give to others.”

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