Laurence Borg and his son Stephen.

Laurence Borg has two sons. The elder is a medical consultant and the younger lives with an intellectual disability. Laurence has dedicated most of his life to helping his younger son. He is now fighting tooth and nail to make sure that when he’s gone, his son will still have a good place to call home.

“My second son, Stephen, was born 37 years ago and I shall never forget the few days that followed. On my first visit to hospital everything seemed wonderful and I returned home very happy to attend to my other son, who at the time was only three years old.

“The next morning, however, my world turned upside down. The doctor explained that, overnight, Stephen had developed pneumonia and was placed in intensive therapy care. Complications ensued and after a few days he also suffered a sudden cardiac arrest. I remember receiving a telephone call from hospital telling me to rush there because my son was in imminent danger of dying.

“In spite of Stephen’s heart having stopped beating for a number of minutes, miraculously he survived. I knew that most survivors of cardiac arrest suffer from moderate to severe brain damage, but the doctors assured me that our baby was healthy and that there was nothing to worry about. I felt otherwise. Somehow I knew that my life would never be the same again.

Quite often I willed the world to come to an abrupt end. Sometimes I still do

“After about two weeks Stephen was released from hospital. We could tell from the very start that his behaviour and development were not normal. He cried almost incess-antly and could not maintain eye contact. My wife and I took turns to catch some sleep. For years we forgot what it meant to have a good night’s sleep.

“All of Stephen’s milestones were late to develop, but I stood strong in the belief that some brain cells might take over his damaged ones. As he grew older and finally started to walk, Stephen developed hyperactivity, to the extent that he broke or tried to destroy anything within his reach. He never played with toys but simply broke them. Sometimes my wife and I felt completely helpless, living a life of utter hopelessness and without meaning.

“In those days there was little expertise in the field of his disability. There was no CDAU (Child Deve-lopment Assessment Unit) that could make a proper assessment. We started to visit psychiatrists to give us some guidance, but all they did was to prescribe sedatives. My wife and I could not stand seeing our son in an almost vegetative state, because we were sure that in such a state he was not going to make any progress. One particular psychiatrist agreed with me and suggested that we take the sedatives ourselves instead of our son. He explained that Stephen suffered from a moderate form of intellectual disability and had a very short attention span due to his brain not being capable of filtering information from his environment. That is why he was alerted and distracted by the slightest sound and movement.

“During the early years our social life was a disaster. Attending social events such as weddings, eating out or picnics occurred only in our dreams. Relaxation was no longer an option and nobody ever offered to help. Of course, we couldn’t blame them, but it was very difficult to accept all this. Time took its toll and soon my wife started to suffer from depression and my problems multiplied. Quite often I willed the world to come to an abrupt end. Sometimes I still do.

“When Stephen reached school age, and after several unsuccessful attempts to enroll him in mainstream schooling, he started to attend a special school. Finally my wife and I started to have some respite and things started to look bright. I insisted that my wife return to her previous job, at least on a part-time basis, and slowly, slowly, our confidence started to rebuild itself. Stephen’s behaviour and attitudes started to improve, and for the first time he talked about friendships, classmates and homework.

“He started to become curious about the pictures he saw, he started playing video games and listening to music and though he never learned how to read, collecting picture books became his obsession. I shall never be able to thank those teachers who made all this possible. Since then, Stephen has made big improvements but still, he is far from capable of taking care of himself and will never be. His mental capacity will never exceed that of a ten-year-old.

“Of course, through this ordeal we did our best not to neglect Stephen’s older brother, but could hardly afford to give him the necessary attention. But I do not think that this affected him adversely. On the contrary, he grew up to be a very independent person. Luckily for us, he was extremely bright and understood from the start that his brother required special, undivided attention. He gave us the will to go on, never showed any resentment and did exceptionally well in his studies and career.

“On my retirement I became a committee member of the National Parents’ Society. I wanted to give my contribution towards the welfare of the disabled on a national scale. I wanted to be a voice for those who cannot speak for themselves. My vision was to raise the social status of the disabled by the enhancement of education, accessibility, social participation and public awareness.

“My present priority is to voice the concerns of many parents who, like me, know that the day will soon come when we have to let go of our disabled child for his/her sake and ours. We have sacrificed and dedicated some of the best years of our lives totally to their care and well-being. We are now feeling the burden of old age and life-threatening health conditions. We deserve a rest but we are worried that our children will suffer the sudden and devastating trauma of losing their carers, friends, possessions and living environment all in one day.

“We want to see appropriate residential homes with the necess-ary caring, comfort, well-being, protection and companionship. We want to see the introduction of supportive fiscal structures that will protect and enable our children to fully benefit from any inheritance left to them. Then, perhaps, we will finally rest in peace.”