I ended my last autobiographical post with the actions we took to reassert some external boundaries, within which the boy could be independent and safe. With us paying his rent, food, and medical expenses, buying his clothes, and checking up on his well-being day by day, he stayed fed, warm, and well for most of the time.
At this time, we still didn’t know about the frontal lobe damage. However, through a combination of trial and error, divine inspiration, and sheer native stubbornness we stumbled on a model that more or less worked – limited money meant limited temptation; someone to check on him meant we noticed some of the worst excesses before they could cause harm; and the Jesus connection, which we encouraged in every way we could, gave him a set of external rules to live by.
Periodically, he would spin out of control again, and we’d pick up the pieces and set him back on track. Usually, those out of control episodes involved either a shark or an ostrich – or both.
Sharks and ostriches are the bane of parents with a child who has been ‘mainstreamed’. Mainstreaming – for those that don’t know – is the policy of keeping people with disabilities in the community. At its best, people are provided with the support they need to live full and fulfilling lives as part of the same organisations and social structures as everyone else. At its worst, which is most of the time, it means abandoning someone with disabilities to be preyed on by the community’s thugs and ignored by everyone else.
Mainstreaming is much loved by the social welfare agencies and their political masters. The helping professions like it, because it fits their paradigm that being separated from the community is a punishment; the politicians like it because it is cheaper (as long as you don’t look at the long term costs and consequences).
An adolescent and young adult standing under five feet tall, with slow speech and poor co-ordination, and absolutely no judgement whatsoever, might just as well have had a bullseye painted on him.
Here are a few stories of sharks he has met.
- The nice people he met at church and boarded with, who dropped him to a course he was on each morning, and picked him up each time. It took us a little while to find out they were charging him $10 for each five minute trip.
- The man who offered the boy a ride home one night, beat him, robbed him, and raped him.
- The caregiver, paid to provide him with support in what the State calls ‘independent living’, who insisted that his shower was perfectly adequate (a plumber called in by us found that the hot tap had never been connected) and verbally abused him for showering at a friend’s place.
- The policeman who offered him a plea bargain for a lesser charge of disorderly behaviour when he was wrongfully accused of assault, even though the policeman knew the accuser had lied about being assaulted on several earlier occasions, and even though the accuser was twice our son’s size.
- The succession of caregivers who took him to gamble his spending money away at the pokies, but didn’t support him to keep his flat clean.
- The seller of ‘herbal medicine’ (based on pond algae) and her doctor accomplice who signed him up for a year’s supply at a cost of around 15% of his total income. (‘But it’s organic,’ she said when I phoned her. ‘So is hemlock! So is cyanide!’ said I.)
- The pastor who encouraged him onto a course that would teach him how to offer healing – at a mere $400. The idea of our boy offering healing to his fellow congregants was rather appealing, but against my less pleasant instincts I withdrew him from the course.
I could go on at some length, but that’s enough.
Meanwhile, those who were not of active ill-will turned and looked the other way, or buried their heads in the sand.
To be fair, there have been great individuals too.
- The caregiver who learned to recognise the signs that he was heading for the nadir of his spiral pattern, and who would phone us before he crashed.
- The doctor whose diagnostic style was to ask the same question in five or six different ways so that he could be sure that our son understood him, but who never, ever treated him as less than a fully autonomous adult. It was this doctor who referred us to the Brain Damage Clinic, where the specialist confirmed the widespread and serious damage to the frontal lobe, and gave us the useful line that the only known prosthetic frontal lobe was a caring relative. He also told us that people with our son’s level of damage are invariably in prison or a mental institution at our son’s age – so great credit to our boy for coping so well, and living such an independent and successful life.
- The client who, when my son’s house burned down while I was on a job, provided a shoulder to cry on and a taxi to the airport – and still gave further jobs in the following years.
- His sisters, who have been, and still are, a great support to him and to us, and his nieces and nephews, who adore him.
Over the years, things have settled down. Our son needs to learn from his mistakes – he can’t extrapolite. But he does learn from his mistakes. He never repeats exactly the same mistake twice. It is a problem that he can’t seem to recognise an error as the same error if some of the circumstances have changed. For example, he has been run over several times, because seeing things on one side of his body takes conscious effort. But he has never been run over on the same piece of road.
He lives totally in the present – with a total disregard of the past and only an academic interest in the future. This makes budgeting a nightmare, but recovery from trauma refreshingly simple. And it means that yesterday’s problem, or even the problem that worried him five minutes before, is gone as if it never existed.
He trusts us, and he lets us guide him through the shoals. This makes it relatively easy to keep his life on an even keel, though we still have upsets when he forgets to tell us things we need to know.
I shudder for those who don’t have family to watch over them, and I’ve spent years coaching my daughters so they can take over the task if my husband and I predecease our son (unlikely, given his heart condition and cancer history, but possible).
Next post: Something’s lost but something’s gained in living every day – why I’m grateful