Every now and then, something happens that feels like a slap around the face with a large soggy moggy. It’s the recognition of the enormous amount of trust I have to place in so many people. It’s one of the biggest trusts I can ever imagine giving – the trust in keeping my son safe; protecting him from an often hostile world and from his own vulnerability. It can’t be done of course but that doesn’t stop my trying and investing so much energy and love in the pursuit of his protection. Fortunately, my natural instinct has always been to trust and I’m prepared to accept the hurt that accompanies those times when my trust is abused. I also know that when my trust has been broken, I can be quite brutally ruthless and will want that person’s guts for garters. I will never trust Hillingdon council again. I’ve received the official apology (albeit a mealy-mouthed one) and have had to find a way of working with them cooperatively. But I can never forget that the director of social care authorised a press release the day before the hearing which had the sole purpose of presenting Steven in the worst possible light. I will never forget the judge, on being shown the press release, throwing his hands up in the air and despairing: “This is about a vulnerable man in their care”.
But that is raking over old, hot coals that I cannot change. Trust, or the breach of my trust has surfaced again big time this week, as one of Steven’s longest-serving support workers has been “let go”. I’ve had a few days of beating myself up that I wasn’t brave enough to act sooner and also had to deal with the embarrassment of how much I’d been played by the worker over the weeks.
To grasp how powerful this need to protect is, one has to understand that to Steven, like the majority of people with autism, the world can be a frightening, anxiety provoking place. To be at the mercy of situation after situation that you cannot make sense of must be terrifying. So, to protect himself from this terror, Steven constructs and relies on routines. Hundreds and thousands of routines; some of them sadly unrealistic. And if any of these routines get broken, the fragile shield cracks and the naked vulnerability of this strapping man is exposed. It is unbearable to observe; as I guess it is as unbearable to feel. So, I set myself the impossible task of trying to maintain all the routines. Some are easy: I can always find a shop that will have some lamb chops, so the Saturday tea routine is intact. I can rely on the fact that the lyrics and the video of Take That singing “Relight My Fire” is never going to change. Some of the verbal routines are harder; they require me to have instant access to a catalogue of scripts stored in my brain. Sometimes, if I’m tired, my search function lets me down and that can have hairy consequences. (You’d think I’d know after several hundred viewings the follow on line to Sybil Fawlty’s “Burst his zip today Andre”). It gets even hairier when the reliance on the routine depends on other external sources; from a character taking a break from a soap opera, to one of Steven’s friends at the Mencap pool remembering that Steven likes to serenade him with “Heartbeat” as they greet each other.
The other thing that presses all my buttons is when people use Steven and his condition to cover up their own stuff; their own indiscretions. It happened all the time at the positive behaviour unit. Take the incident that led to the council issuing the first deprivation of liberty authorisation when Steven escaped from the unit. There has never been any acknowledgement that they failed in their duty of care that day. Worse, they used the incident as a cover for their real agenda which was to move Steven away. I can’t tell you what a relief it was when Justice Peter Jackson saw straight through that manipulation.
That brings me back to the latest dent in my trust this week. Three weeks ago, Steven went out for his normal Thursday afternoon train ride with his two support workers. It’s the same routine every week; a trip from one end of the Metropolitan Line to the other, getting out at Aldgate for a bag of salt and vinegar crisps. He loves it. I got home from work that Thursday afternoon and there was nothing untoward reported. The following Monday one of the support workers approached me and told me that he was very uncomfortable about the actions of the other support worker during the train ride. His story was that they had to change trains, Steven became agitated by the change to routine and the second support worker put them all in a dangerous situation. He convinced me to cancel the train journey for the duration of the Olympics as he felt it would put too much pressure on everybody. The focus of the conversation though was Steven’s behaviour during the trip. As the days passed, I became more and more disconcerted that the second support worker wasn’t mentioning the incident. Eventually, I showed him the other guy’s report and he got very upset. The reason that he hadn’t reported anything was because there hadn’t been anything to report. Yes, Steven had become anxious but he felt that any potential problem was contained. he pointed out that the reason the whole situation came about was that the first support worker wanted to leave work early that day and wanted to cut short the journey. Sod the routine. Sod Steven’s distress. He wanted to leave early but didn’t have the balls to ask. And just like the DoL story at the positive behaviour unit, he tried to use Steven’s response to cover up what really happened. I can’t be doing with that.
What links Hillingdon and this support worker in their arrogance is that they totally overlook that the truth usually comes out – from Steven himself. he doesn’t understand the concept of a lie and in his own idiosyncratic way will find a way of communicating the truth. A few months after Steven returned home from the positive behaviour unit, he suddenly said to me one night: “Steven Neary’s feet got all muddy”. the ensuing story consisted of six sentences but told the whole story. After his several escapes from the unit, the staff decided to lock his shoes away in a cupboard in the hall. he had to ask for his shoes whenever he went out. It appears that on this particular day, one of the unit staff was a nasty wanker, who for the sake of argument we’ll call “Nick”. This was Steven’s six sentence story:
“Steven Neary’s shoes was in the garden”.
“Steven Neary went on the muddy grass”.
“Nick threw Steven Neary’s shoes outside in the raining”
“Nick was laughing”
“Steven Neary got his shoes back”
“Steven Neary’s happy now”.
It cuts me up recounting that story but I hope it illustrates that my capacity to trust is constantly on a knife-edge. That chap was always very agreeable whenever I met him. There would have been absolutely no point in making a complaint because in all likelihood it would have led to Steven being abused further. I don’t mean in further incidents like that; Steven was at home by now anyway. No, for me, it’s as big an abuse to deny him his version of his reality and to have his vulnerability turned on its head, so that he becomes the problem.
Thank goodness that I have several people around me that I trust completely. Without them, the terror of how easily Steven’s vulnerability can put him in danger would be quite unbearable.