Last month, our son celebrated his 35th birthday. There have been many times during his lifetime when we’ve doubted we’d reach that milestone. He survived cancer in infancy. He survived accident after accident in childhood, plus several serious illnesses and a major convulsion event. More recently, he has been diagnosed with heart problems and osteoporosis. But he was never closer to death than during his adolescence.
We entered his teenage years without any idea that the worst was still to come. We thought we had all the diagnoses, and the medical or other treatments necessary to deal with them.
Through sheer force of will, he had mastered unvoiced consonants – a major and unprecedented achievement for a person with his level of ataxia – and could now speak clearly, if slowly. He was on growth hormone therapy and was finally gaining a few inches of height. He was doing okay at school; had friends who came to tea, enjoyed a range of activities including his riding.
Looking back, there were a few odd things; patterns of behaviour that could have alerted us to the coming storm if we’d known how to read them. Did the doctors know? I’ve since acquired and read through his medical records, and I’m convinced they did. But they didn’t warn us then or even after the problems started.
Frontal lobe damage at the right of the left-hand image. Deeper grooves and shrunken tissue show loss of brain interconnections. The right-hand image shows gross enlargement of the inner brain chambers, with similar loss of tissue around them. (BB)
As we later – much later – discovered, our son has between 5-10% of normal function in his frontal lobe. The frontal lobe regulates judgement, the connection between cause and effect, and the whole area of effective decision-making. It develops throughout childhood, finally reaching full maturity in most people in their third decade.
Our son’s frontal lobe had stopped developing in early childhood – probably because of the chemotherapy – and had never progressed beyond that of a young child. Severe frontal lobe damage can be managed by applying external boundaries to replace the missing ability to make judgement-based decisions. During childhood – as normal parents – we maintained firm boundaries, but as we passed more and more control into his hands, his life began to spiral out of control. The car was in motion, but there was no driver at the wheel.
We had no idea what hit us.
We went from being a stable, happy family to being a major crisis zone.
He stopped doing homework – or, indeed, any work. He gave up showering about the time he took up smoking. One problem followed another: foul language, petty theft, drug use. We sought help from his specialist, who referred us to a psychiatrist. She told us that he had self esteem problems.
He dropped out of school, and took to hanging around the centre of town with a pack of other young men. He regularly got dropped home by the police, late at night and drunk. His sisters begged to go to boarding school, where no-one would know they were related to their brother.
We joined Toughlove, seeking some ideas for coping. One of the nice things about Toughlove support groups is that there is always a family whose problems are worse than yours. We <em>were</em> that family.
He convinced the government social welfare agency that he couldn’t remain living at home, was put on a disability benefit, and left home. He got a trespass notice from Macdonalds for sitting down at strangers’ tables and eating their chips.
The social welfare appointed counsellor told us he had self esteem problems.
Relatives on both sides of the family asked us what we’d done to ruin our son’s life. My brother applied to the government for custody. Our parish indicated that they would prefer not to have anything to do with him or our problems, but if we’d like to donate to the church building programme, that would be very nice, thank you.
By now, my husband and I were having self esteem problems!
His independent government-funded income made the boy attractive to sharks. After he jumped off his flat roof, high as a kite and convinced he could fly, he returned home for a time. We treated the impetigo and scurvy, nursed him back to health, and bought new clothes to replace the dirty rags that were left of his wardrobe. As soon as he was on his feet again – he left.
This became a repeated pattern for the next few years; a downward spiral, followed by a crash, with us picking up the pieces at the bottom of the cliff and putting him back together again. He was endlessly inventive about finding new ways to mess up, and he trusted anyone who said they were a friend.
He borrowed money from anyone who was nice to him; gave it away to anyone who asked; and never had any left by the evening of benefit day. People took to phoning me and asking me to pay his debts. At first I did, but that just confirmed the behaviour, so I took to telling them which day his benefit was paid, and suggesting that they wait at the bank with their hand out.
Meanwhile, we were doing our best to protect the girls, who were trying to have a normal adolescence in a small town. I was a columnist with the local paper; my husband was active in various community groups; we both owned our own businesses; we were not exactly anonymous. Oh for the surname ‘Smith’!
We eventually managed to lie our way into control of our son’s income, heavy the drug dealers out of his life, and get him arrested (we pressed charges for the theft and attempted sale of his sister’s bike) so that he could experience the consequences of his lifestyle before they killed him.
The night in jail and the day in court sobered him, but the real change came a few weeks later when he one night went to an evangelical Pentecostal church meeting. Next time we met, he announced, “Mum, I’m not a Catholic any more. I’ve become a Christian!”
Next: mainstreaming in a community of sharks and ostriches