Rosa Monckton has a fourteen-year old daughter with Down syndrome. She has campaigned for over a decade for the rights of disabled children and their families. While making this documentary she realized that it’s often hard to look beyond the disabilities because sometimes no matter how much their mothers love them, that alone is not enough. Although giving birth should be the most beautiful moment for a mother, being told that her child has a disability can make her world come crashing down around her.
One couple devoted their lives to their seventeen-year old son who has been diagnosed with Asperger syndrome. His symptoms include obsessive-compulsive behavior and erratic mood swings. His behavior has become volatile and the smallest things can set him off. As he watches videos of himself as a baby he launches into a tirade of obscenities, then quickly points out that he wants to stop swearing. He seems unable to control his rage.
Then there’s the single mother with the twelve-year old boy who has cerebral palsy. She is on call 24 hours a day because if she stops, everything will fall apart. The boy has a mental age of two and he can’t walk, get dressed, or feed himself. His mother operates beyond exhaustion because this is not her only child. She has a ten-year old son who is involved in every aspect of his brother’s care, which means he’s missing out on his own childhood.
There’s another single mother of three who has a small girl with a still undiagnosed condition. The three-year old child is blind, has severe epileptic seizures, and cries relentlessly, sometimes for days at a time.
Siblings of children with disabilities also suffer substantially because they need to help out while at the same time they run the risk of being neglected by their families and bullied or abused by outsiders.
Having money helps, but it doesn’t relieve any of the pain. What these parents need is help and support in the form of an extra pair of hands that lighten the load of caring for a disabled child. The isolation they feel is crushing and often they have to work through layers and layers of bureaucracy in order to get government help.
Many mothers find it hard to cope and reach a breaking point in which they end up making regretful decisions. These are the moments when they are pushed beyond the limits of what they can endure emotionally. The news is filled with their stories and these are often told in a judgmental way where only one version is explored. The truth is that many of these mothers are driven to kill the children they love because they could no longer handle caring for them and they were overwhelmed by despair and exhaustion. And no outsider is in any position to criticize those who find that looking after a special needs child is an intolerable burden.