Parenting a disabled child

By common consent, parenting is one of the hardest – and most underrated – jobs anyone can do. It's not just the physical demands, though heaven knows the broken nights, early starts and constant multi-tasking all take their toll. Finding the mental energy to plan, organise, coordinate, discipline, second guess and troubleshoot can be hugely draining.

Imagine now, this stage goes on – not only beyond your child's early years and into school, but to secondary school and into adulthood. Society expects the gradual transfer of responsibility from the parent to the child, who assumes control of their own life as they grow and develop. But if you have a child with a disability or a learning difficulty, the hard fact is this isn't going to happen in the same way. And for some families, it may not happen at all.

Parents of disabled children and young adults know only too well the level of extra support they need to access the same choices and opportunities as their peers.

It starts early. It isn't easy finding childminders, nurseries or out of school care for children whose difficulties may not be recognised or may be viewed as challenging behaviour. If any kind of change, unexpected event or disruption leads to a huge spike in anxiety or distress, many conventional care settings simply won't offer the right support to enable a disabled child to thrive. And if complex medical care is also part of the package, the bar becomes higher still.

When a child reaches school age, parents report huge difficulties in accessing the support they need. Too often, necessary adjustments seem an imposition rather than a means of helping a child access an education to which they are entitled. Lack of widespread awareness and training in supporting young people with disabilities means potential is overlooked and aspirations remain unfulfilled. Classes and activities are rarely planned with the viewpoint of the disabled child in mind, meaning inclusion becomes an afterthought: no surprise so many parents are regularly asked to collect a child from school because staff can’t meet their needs. And as school leaving age approaches, good quality information and transition planning is simply not there for too many young people.

Certainly there are practitioners across Scotland who are highly skilled, experienced and supportive. The legislation and guidelines around what families should experience are second to none. But if they aren't put into practice where you and your family live, that's of little help. As always, legislating for a service is only half the story – it's access that determines if it makes a difference.

Being the parent of a disabled child is accompanied by many emotions. There's plenty of love, joy and pride in all your child achieves, especially seeing the tenacity, determination and sheer guts it takes to tackle some of the challenges they face.

But there’s no doubt that for many parents there's also awareness your future has been hijacked in a way you couldn't have anticipated. That job you wanted? The demands won’t fit with repeated absences to cover medical and social services appointments. The visit to far-flung family members? Not going to happen, if your young adult can't travel but can't be left behind either.

One thing that sets parents of young adults with disabilities apart is that it's not clear when their role as carer, support worker and health practitioner comes to an end – when, and to whom, the reins should be handed over. When other parents talk of “getting their lives back”, parents of disabled children have a new set of skills to learn – those of an adult carer in the complex and unfamiliar territory of adult services. No wonder many say: "It's our transition, too".

Feeling isolated is common. According to many parents, a big factor is the sense other people just don't “get it” – assumptions are made about their ability, capacity, energy and willingness to go on caring indefinitely, and parents find their own needs pushed to the back of the queue not only through the childhood years but for as long as they can keep going.

They lament the fact that the challenge of finding, accessing and managing the support their young person needs to function, too often prevents them having time simply to be parents, and enjoy a family life.

Last, but by no means least, they talk about the creeping fear every parent of a disabled child lives with. What happens when I'm no longer here to fulfil the role of mum or dad?  Who then will make sure medical appointments are kept, finances managed, personal care needs met and a vulnerable adult safeguarded?

Who indeed?

Contact’s Going Forward project has involved more than 200 families of disabled children and young people across Scotland in identifying the information needs of families as their children prepare to leave school. Their new website will be launched next month.