Steven – parent of a child with a disability

I met Steven* while working at a hospital in Brisbane. We met because his young son Andy* had been born with serious health, intellectual and developmental issues. Now 5 years old, Andy was a very sick boy. He could not move, eat or breathe without help and required around the clock care – which was mostly provided by his parents.

Since Andy was born, Steven had not had more than 3 hours of sleep a night. His son was attached to a machine with an alarm that would sound when his breathing was compromised. This alarm went off frequently and would wake everyone. Andy would often scream out in pain during the night and need soothing. He also required regular feeds through his feeding tube. These tasks had to be done every evening just to get Andy safely through the night – and these were mostly done by Steven.

When his son was born, Steven and his wife had a happy marriage, full time jobs and a lovely home with a manageable mortgage. By the time I met Steven five years later, he had separated from his wife (although they remained living together), they had both left their jobs to look after their son’s full-time needs and they were looking to sell the family home as they could no longer make the repayments.

Over the years, Steven had become so exhausted that he was unable to complete basic tasks – reading, following a storyline on a TV show, remembering important events, having a conversation, and driving. He was so consumed with the needs of his son he had neglected himself and his wife. He was overweight, anxious, unhappy, angry – and unable to see how he could keep going.

When I asked him what he needed right now, he simply said “sleep”. Steven and I sat down to create a Gather Group account. We worked out a plan to help him get some sleep. We invited his Aunty, his sisters and his four best mates from high school – the friends and family who had offered help over the years but had never actually provided the help that Steven needed. They were thrilled when he asked and accepted his invite to help immediately.

After a brief training session at the hospital, the Gather Group technology was used to roster eight of Stevens’s friends and family on to regular Saturday night shifts (in pairs until they built the confidence to do it alone). The technology was also used to share updates, post links to relevant information and check to see what other help Steven needed throughout the week.

Steven began to get a stretch of 12 hours sleep every week and, the next time I saw him, he looked like a different man. He was sitting up straight, was no longer constantly angry and shaking, and was speaking of the future with hope. He told me – “I honestly did not think I could keep going. I couldn’t think straight. I can’t tell you how much easier it is to cope with things when you know that support is on the way”.

“Reaching out to my family and friends saved my life”.