Caring for your disabled child

Having a child brings a lifelong committment, but with an expectation that when your child grows up, they'll need less care from you. When your child is disabled things can be very different. You are both a parent and a carer. Accessing the help and support you need can be a battle.

Sound familiar?

Facing the future : "After Josh was born I went through this period of adjusting my dreams for him. It's not just that he'll never play for United, but the little things like will he ever be able to tie his shoelaces. Nowadays I find myself worrying so much about what will happen to him when we're gone. What kind of a future will he have?"

Being fair to your other kids : "I do feel bad for my eldest daughter. Because of Megan's disabilities, so much of our life is about Megan - Megan's routine, Megan's diet, Megan's hospital appointments. Rosie is so sweet about her sister but I know it must affect her. I try so hard to make time for her too, but Megan's care is so intensive. Rosie does miss out and the guilt is horrible."

Making time for your relationship : "It's so hard to find time for us as a couple. Adam's behaviour is very challanging and it makes it almost impossible to find a 'babysitter'. Couple time is very hard to come by."