Jim’s story was originally part of my book “Being a Support Worker” I have many stories about Jim, he taught me more than anyone I’ve ever known.
Jim is a whirlwind, a person with supernova levels of energy and joy, passion and enthusiasm.
I started working with Jim when he was finishing school, he was 19 years old and at the time most people with learning disabilities stayed in school till they were 21, but Jim’s mum Julie felt like it was time for him to move on, he was getting frustrated at school and she felt that a 19 year old man should be starting to make his way in the world, which is where I came in.
Technically the work was through children’s services as a transition project, just to take him out after school for leisure activities and make sure he got home. I had already worked with several other young men through children’s services in this more Outreach type of way.
Jim had what would be described as severe learning difficulties, however, that doesn’t give him any credit for what he is able to do. Jim has a condition which causes him to have a malformed lower jaw, so his mouth hangs open, he can’t speak (whether this is physical or related to his learning disability is unknown to me, but his ability to communicate despite that was second to none). He also has difficulties with fine motor skills, and has low muscle mass and bad circulation which meant he is quite thin and gets cold easily.
It’s difficult now to remember the chronology of what happened with Jim, I learned more in that 3 years than probably any point in my life. We did so much in the time we were together, ups and downs, went to many places and did many different things.
Jim’s greatest asset is his family, his parents Julie (an early year’s educator) His father Harold, a clinical psychologist working with youth sex offenders, his two brothers who had both moved out of home when I started and his younger sister. They are a very close family and help each other out, they all work hard and all have the right values.
Julie was the key in all of the events that would transpire over the following 3 years. She made it clear what her expectations were for Jim and the support I would provide, after the initial transition work she asked me to continue with Jim into adult services, which would probably be the fundamental move in shaping my future, as I found I preferred the more constructive focus of adult services, it wasn’t just about leisure, it was about outcomes and goals, dreams and wishes.
Even though Julie had hopes and aspirations for Jim, and was responsible for the majority of his care, she also made sure that I knew the importance of Jim making choices and deciding his own path in life, this was the first example I had come across of what was to become known as being “person centred” Even though I didn’t know the terminology at the time, it just made sense to work that way, what would I want if I was Jim?
Julie worked hard and kept the family going, they all worked together, but there is no doubt she was the glue. She along with another parent had also started the first independent employment service for people with disabilities in New Zealand; this was enough for me to know she meant business. Ironically Jim would eventually sign up with that service and they would struggle to help him find work, mostly due to his behaviour and support needs.
The most important aspect in relation to me working with Jim and the processes that I was beginning to become aware of which hadn’t been such an issue in children’s services was funding. Jim had a 5 day per week, one to one service to support him to go about his days. I stepped into this without really being aware of funding implications. What I was later to find out in discussions with Julie was the stress she felt in fighting for Jim’s hours. That he was in fact, the first person in the country to receive a service of that nature. There were of course people whose behaviour or disabilities meant they required 24 hour care and support, but Jim didn’t fall into this category, but there was no one at the time who had a vocationally based one to one service, being new and naive I just assumed that people like Jim (although, there’s no one “like” Jim, he’s a true one of a kind…) would get this kind of support!
But even then, in the time when the world was generally moving forward in relation to disabilities and the attitudes towards people was changing, for the most part people were put in understaffed day centres…because it was cheaper.
Julie kept fighting for Jim’s funding, maybe she still is, and it was down to her persistence, and I’m sure she won’t mind me saying this…stubbornness. It made for unnecessary stress, the family shouldn’t have to do this, but as I was to learn over the years this was more than common, at times it’s the family underestimating a person’s ability, or sometimes just being overly protective, but in Jim’s case the funding for support hours was without doubt needed, and he could easily have used more.
The organisation I worked for still tried to get Jim into a couple of their day services, and it was my job to get him to a point where he didn’t need me to be there to support him, but we’ll get onto that.
When I meet Jim for the first time, I was walking to his parents’ house; they lived 15 minutes from my house in Wellington’s Brooklyn suburb. On the way there I passed an obviously disabled man with what I assumed was his mother outside the Brooklyn library getting into a car (libraries would come to play a large part in the next few years…) I wondered, is that them?
I arrive at their house around the corner and walk up the drive way, I see the same people getting out of the car, Jim spots me and points energetically, he’s grunting at me, I assume it’s something like..
“Who is that!!?”
What I would come to learn is, it probably meant…
“New person, toy for me to play with…”
Jim came straight up to me, I noticed the scarf around his neck, he hugged me with a huge smile, he then began to check my heartbeat, my pulse, made me flex my muscles so he could feel my biceps, checked the temperature of my forehead… quite professionally, Jim had been to the doctors a fair few times…
Julie invited me in to discuss things, Jim showed me his room, full of toy trains, diggers, bulldozers, trucks, planes… he was obsessed with them, Julie showed me what they’d gotten from the library, various magazines about trains, videos about trains, Jim was so excited by these that he needed to put one on straight away. Jim was totally and utterly obsessed with vehicles and transport, which would become a useful tool for me in time, but also a challenge to overcome as well.
We talked at length about Jim, the family, what he liked and didn’t like, and his eating needs in particular.
Due to Jim’s jaw and his mouth hanging open he would dribble continuously, for this he wore the scarf most of the time. He carried around at least 5 spare ones to use throughout the day, usually we change it after eating but sometimes they got too wet. Jim also has difficulty chewing, so only eats soft food, Julie said don’t be afraid to give him junk food, anything fatty is good.
Jim was skinny due to his condition, and also was so active that he probably burnt off every calorie he ate and then some, Jim’s favourite meal was a huge bowl of weetabix with rhubarb and yoghurt…often he would happily go back for seconds when eating this. He also had protein milkshakes to help with his muscle and weight gain.
Jim never gained any weight when I knew him, he was constantly moving, even when sitting down. I expect he’ll be the same size his entire life.
He made quite a mess when he ate, and since we were out and about most of the time we often ate in public, Julie had relayed a story to me where a woman had thrown up at seeing Jim eat, it took some getting used to but after my experiences in children’s respite, I could handle it, I had dealt with every substance that could come out or go into a human body by that point…
The eating would be an issue at times, I always asked Jim to clean up after himself and I had to plan our time to include plenty of time to eat and clean up afterwards, often I would need to hurry Jim so we could be on time for things, which would get him annoyed with me, but it was important part of learning about real life. All that said, eating our lunch together was important, we would become colleagues, partners in crime even.
Julie asked me if I wanted to work with Jim full time, but I was still doing some shifts at the respite service and I thought that 5 days a week with the same person might be a bit too much, for both of us. Although I could provide consistency, particularly in managing behaviour I also knew it was wise to give both of us time from each other.
One of the main issues I had was that I had set up responses to behaviour’s that were an issue, but other people didn’t follow this advice, and in doing so compromised my approach and gave Jim mixed messages. There were times I even relented on my own convictions, rare though they were, Jim was hard to say no to. He is very charming and friendly and ultimately intends no harm at all, so he is very likeable and was known by many people.
As I described in my initial meeting with Jim the way he manhandled me, this was something he did to a great deal of people, eventually I was to develop a sixth sense of who he would do this to, sometimes it was obvious who he would choose, other times I just knew.
Mostly he went for fit young men, preferably with big muscles that he could feel. For the most part people didn’t mind, and in our daily travels we would often come across the same people.
This was something that was important for Jim to do, it was a way of interacting with people, part of his fascination of people and he found it fun.
I had no intention of stopping it, but I knew it needed to be controlled, that Jim needed to learn who he could do this to, and when and where it was OK.
Due to Jim’s appearance, most people didn’t react aggressively, but many people looked scared or uncomfortable with it. One man I met and spoke to about it who got on the same bus home as us almost every day said:
“I don’t mind the touching, it’s just the bloody dribble I can’t stand”
For those who knew Jim, I allowed each person to set their boundaries, but asked people if they saw Jim in certain situations that they don’t allow it, in the library… or at college, it didn’t always work but Jim did learn.
Julie had explained to me that when Jim got really upset, he would shout and try and hit people, most often it was her as she was the closest person, the first time I saw him upset was at home and he punched his mum in the chest, she didn’t seem phased by this, but I knew it was upsetting for her to have someone else see this.
The first time it happened to me, and what would become the usual kind of situation in which Jim got that upset was at a school 5 minutes’ walk from their house.
Before I had started Jim had been doing a job at the school cleaning the teacher’s common room. Julie asked me to support this to continue. I was still developing my relationship with Jim, but we’d been getting on well so far.
We went to the school, got shown where to go and what to use with a run-down of the tasks required, vacuuming (which I though Jim would love, the machine!) wiping down tables etc. Nothing too taxing or complex for Jim to manage.
Jim was working very slowly, and wasn’t really trying, I prompted him, and he looked tired and bored. This continued on for a while, Jim got distracted constantly by whatever was out the window. My frustration built up, and I learned a valuable lesson in patience. I pushed him too far, I expected him to do the job, and he blew up. Pointing his finger at me, screaming and crying, shaking his fist… it looked frightening, I kept my distance and Jim followed me out of the room, clearly wanting to hit me. I managed to speak to a teacher and said:
“Just get him out, I’ll make sure he gets home”
I didn’t know whether or not anyone else might get hit by Jim if they got in the way, but did come to find that it was all directed at me, rightfully so in hindsight.
I can’t remember all the details of leaving the building, but I do clearly remember being outside, while Jim walked home on the other side of the road, still screaming and pointing at me all the way.
I called Julie and explained, said I was sorry, hadn’t had time to realise what I had done wrong, and really wasn’t sure about the repercussions of the incident.
Later when back at home, Julie called me back. She said she spoke to Jim once he had calmed down, he signed.
“No go school”
Julie assessed this as not being the job, but the fact that Jim had now finished school, having to work in one was something of a backwards step in his thinking, I could understand this.
“Fair enough, what about the job?”
“Jim was clear, we’ll find him a better one”
The next day I went back to pick Jim up, he acted as though nothing had happened the day before. Back to business.
I mentioned Jim’s inability to speak, I had worked with plenty of children in respite who couldn’t communicate verbally, or used Makaton and had visual aids or used behaviour to communicate, my understanding of this was still developing, but working with Jim took my own communication to another level and really made me appreciate and even enjoy using alternative methods.
Jim used sign language, New Zealand Sign. He had a fairly large vocabulary but was restricted by what was known by those around him. And like many people with disabilities (and bearing in mind his difficulty with fine motor skills) Jim had developed his own idiosyncratic versions of signs. I quickly learned Jim’s key signs
Jim signed this word to me at least 50 times a day…
Jim loved shops, toy shops, with toy trains…
He loved McDonald’s milkshakes…
We would go swimming often…
Which meant either going to the library (would learn the sign for that later) or getting a train magazine from the shop…
And so on.
Most of the signs, looked like the actual signs, but Jim would do some two hand signs with one, or may only do half the sign.
All that said, you didn’t need to know sign language for Jim to get his message across, Jim was incredibly expressive, he watched a great deal of cartoons and often acted…well, cartoonish.
If you’ve ever watched cartoons, hopefully I can illustrate this for you. When a character is about to run off in a direction, they will pause and lift a leg and edge in the direction they need to go, then zip…
Jim did this often… With a huge smile on his face.
Also, part of the learning in doing sign language is the way you use your face, and your whole body to express certain things, Jim was good at this, and his face was so very expressive it didn’t take much to get how he was feeling.
Another one of Julie’s excellent ideas was that we all work together to improve our sign language, and therefore Jim’s. We hired a private sign language tutor to come to their home and we could all learn together. Jim refused to take part in these but I learned several modules of NZ sign, and started using more signs with Jim, and even had the occasional discussion with a deaf person.
Over time as our relationship built, and I got better with communication, and understanding Jim generally things were made easier. I could get important messages through to him, speaking and signing could emphasise things so much more, often Jim would surprise me with another sign he hadn’t used before, but I was more able to figure out what he was saying.
I’ve said it many times, but communication is the key to successful support.
The aim of the whole venture was to find Jim fulfilling and constructive things to do with his day, learning, work, health, and social needs so I worked on finding things for him.
We went to a local college and joined Jim on an “International Computer Driving Licence” course, this was to learn the fundamentals of using a computer and getting a qualification. Jim was quite good with computers already, and able to load and play games, navigate some pages, that said, as accessible and user friendly the course was I think I learned more than Jim, and it really stretched his attention span, and for the most part he got quite bored. Understanding how to engage people is valuable. I always used the incentives with Jim, because the course was right in the city, if he concentrated and worked hard we would visit the model shop after.
But ultimately the course wasn’t right for him.
I eventually found Jim another college to attend north of Wellington, he engaged in various courses and enjoyed being in a more age appropriate active environment. The college was situated in Porirua, which is essentially a huge industrial shopping estate, so we had the virtue of plenty of shops to look in when Jim had finished for the day.
Here, we also met Gary, someone who would become a big part of Jim’s life and was also embraced by Jim’s family, the whole network was valuable and Julie recognised that.. Gary has a very mild learning disability and Williams Syndrome, Gary was incredibly nice and we often talked about life and coping with things.
Gary was there to support Jim with his computer course as he had done it and was something of a student advocate volunteer… something, it didn’t matter, he was Gary, Gary was cool.
Gary would go on to support Jim himself occasionally, though he struggled at times, he became part of Jim’s team of lunatics alongside myself. Having a diverse array of people around is a huge help for someone like Jim, different perspectives and personalities are always valuable.
But quite important was finding Jim a new job to replace the ill-fated school cleaning work. Jim and I had paid several visits to the Wellington Zoo, he liked the monkeys the most… and did a good imitation of most of the animals.
I don’t remember how it came about but we enquired about a voluntary job there for Jim, we got offered the opportunity to help feed and clean the kangaroo’s. The job was straight forward and we always worked with one of the zoo staff, who were all very helpful. We would go in, throw around some pellets for them to eat, put out some fresh hay, then sweep up and get rid of their faeces. Jim loved it, he got very easily distracted by the Kangaroo’s themselves, not to mention hearing birds, people, leaves, the wind, baboons everything…
But history does repeat itself, and a new lesson was learned by myself, but also by Julie.
The last few weeks Jim had become less and less interested in his job, I didn’t relate it to the cleaning job experience, because everything other than the fact it was work was different. Jim seemed very tired this particular day and had been the least engaged in the job I had seen, I made the mistake again of pushing him too far, my expectations for Jim’s ability had justifiably risen since the early days, but the principal was the same, he had enough…
Pointing and screaming, trying to punch me…
Then remorse, and tears…
I calmed the situation down much faster, Jim gave me a hug, but we were both exhausted, neither of us had had a break for some time. The fact I had gotten complacent annoyed me, so I spoke to Julie and relayed the incident, I said I think me and Jim need a break from each other for a couple of weeks. She also said, that Jim used to have holidays away every few months, whereas it’s been nearly a year since he had gone away for a break.
I told my manager that I needed a couple weeks off, Jim was going away for a week then someone else would need to support him.
They insisted I take stress leave, I said no, I just need a break, and I’m tired, annual leave is fine… but they put it down as stress leave!
This was the culture at IHC , one manager took 6 weeks stress leave, then never came back. I didn’t complain as it meant 2 weeks off, with pay, without using my annual leave, but I didn’t want to be part of the take advantage of free time off for no real reason… It is a stressful job, but really?
After a couple weeks, I was glad to see Jim, and he was glad to see me, we were both refreshed and ready to get back to our double act.
The swimming pool was one of Jim’s favourite places to go, lots of people with muscles to play with, the water was fascinating to him, so once in a while he’d find his own way there.
A few times I’d get a call from his mum.
“Where were you this afternoon? Where do you think he’s gone?”
She would be worried, but ok with it.
“Said he wanted a swim, the train is always likely”
“Already called the station, he’s not there… I suppose he’s just expressing his independence”
More than once he was returned home by the police, he found his way to all parts of Wellington to inspect their swimming pools, libraries and trains.
Once or twice he was gone for a long time, to the point Julie would be fearful, but he always showed up, usually just charmed his way in to some place, usually getting a guided tour by friendly staff.
This level of freedom was important, it was Jim’s way of saying he needed to do something, and maybe we hadn’t been on a train for a couple of weeks, so he needed his fix…
Shortly before I left Wellington, and Jim, he moved out of home. We spent some time preparing him, everything we did together was to help his independence develop, Julie knew she had to let go and move him on, for his sake more than anything. I told her.
“Jim will be fine, usually when thrown in the deep end he’ll swim.”
But a worried mum is a worried mum.
Eventually IHC identified a shared home, although the house was nice in a nice part of Wellington the other tenants were very different, older, less mobile, staff needed to adapt to the super tornado of Jim, but things seemed to be going ok at the time.
The inevitable departure was looming, I had decided with my now ex-wife to return to the UK, she wasn’t happy in NZ, and I was happy to move to England.
Julie wasn’t happy, she said it in a joking way but I knew her requests for me to stay were serious, Jim had made so much progress in his time with me, but I also felt that Jim had become somewhat dependent on me, that much of the positive things that happened and were happening were because I was keeping things together, it was time for my life to move on, and time for Jim to progress in new ways.
Naturally with all the work I’d put into Jim’s life I was very concerned about what would happen without me, not because I wasn’t there but because whoever was there wasn’t me, if that makes sense?
I informed my manager and Jim’s family that I was going with several months’ notice, this probably just caused a build-up of anxiety for both as not only had I become important for Jim and his family I had also become a well relied upon staff member generally.
As part of that I told my manager that we would need to have a long period to induct a new person to work with him, that the amount I had learned in the 3 years or so I’d known Jim would take quite some time to handover to a new person, I expected, now realising quite unrealistically, a 2 month transition…silly me.
There’s no way they were going to pay for two staff to work with him for that time, I kept reiterating the need for this, even just getting across the basics of supporting Jim would take a long time, let alone the fundamentals of his communication, sign language, just making sure the new person got to shadow all the key activities and see some situations and how they would handle them would take time, can the new person trouble shoot, manage behaviour, use sign language, plan activities…???
What I eventually learned, was that very few people with disabilities who have a changeover of key staff like this would get the appropriate length of time for the new person, many people with disabilities are used to staff coming and going and having to go through teaching a new staff member what they need, like and dislike.
But I was worried, I needed to get this information across, I had filled out several years’ worth of diaries of events, daily recording of our antics, but someone reading through those wouldn’t get the real picture.
The date of my final shift with Jim is rapidly approaching, only a few weeks to go, besides the fact of needing things sorted out for Jim, I’m about to move to another country, so I have quite a bit on my mind at this point in time.
Finally, after imploring my manager to find someone a new person is identified. Strangely, I know him, a friend of a friend, and a very different attitude to me with Jim.
He comes along for the final two weeks, I do my best to pass on knowledge, not really sure how much he’s taking in, and trying to get him to take the lead with Jim as much as possible. I needn’t have worried too much, they seemed to get on fine, and he had a different demeanour to me, but as I observed this I came to the realisation that this was fine, and in fact positive for Jim, Rick’s reign was over and Jim was moving on.
I felt incredibly sad leaving him, and his family. I had grown close to them, I had conversations with Julie about all manner of things, they had enriched me and my life, given me experiences that I would carry forward to today.
 Makaton is a communication method using signs, pictures and spoken words, it’s widely used in disability support
 IHC was the main provider of support for people with disabilities in New Zealand