Tag Archives: learning disabilities

Bereavement

I’d always been close to my sister.

When her marriage broke up, leaving her as a single parent to two children; my nephew (aka Eedy) aged 3 with learning disabilities, autism, adhd and microcephaly and my niece (aka Mogs) of eighteen months – also with microcephaly (and the diagnosis of autism yet to come.) I was there pretty often, playing the role of the second adult in their life. Helping at weekends with the parenting and hopefully sharing some of the strain. She coped really well (although she would have described it differently), she didn’t get much of a social life, and couldn’t even think about paid employment, but she resourcefully spent her time studying for an open university degree in psychology, involved in the Guilliam-Barrie support network and co-running the local adhd support group. She was the extrovert of the pair of us – thinking nothing of talking her cause and expertise on local radio and national breakfast TV – citing the perils of living with and bringing up a child with autism and extreme adhd.

By the time the kids were 8 and 10 she was 4 years into her degree work and had her first serious relationship since her marriage breakup. She’d had health problems in the past. Terrible migraines that her GP had misdiagnosed as stress and prescribing anti-depressants that she stopped taking within a week because they zapped her energy– her optician eventually realised these were caused by a detached retina – most probable cause the toy box her son had chucked down the stairs which had landed on her head.

But nothing compared to her final illness. She began to complain of a pain in her left shoulder blade on Tuesday, stating that it was horrific and beyond words. The doctor and NHS Direct gave advice to take painkillers, heat compresses, and don’t over strain. By Wednesday she wasn’t sleeping due to the pain and called me to pick up her daughter from school, as she felt unsafe to drive. More calls to medics and the same advice. By Thursday my then-husband was taxi-ing the kids and by Friday he went back to the house after the school run to take her (with or without permission) to the hospital. They gave her morphine for the pain and admitted her, believing it to be a pulled muscle or maybe a blood clot.

I picked up the kids from school; we visited on Friday evening and said we’d be back the following afternoon.

Midday on Saturday, April 15 2000, I got a call from someone at work; the hospital had rung there trying to get hold of me. I needed to phone them back.

One of those calls that is never forgotten. The fear was due to what they wouldn’t say, not what they would. Just come. Don’t bring the children.

Just come.

Oddly all I could think about was remembering to turn the grill off. I was cooking fish fingers at the time. I’ve never bought, cooked or eaten them since. They are off the menu. Forever.

I knew, as I made arrangements for someone to have the kids what I was going to face. I even said this as I dropped the kids off. And was told I was over reacting. “Don’t be so silly”.

The hospital staff were sympathetic, professional, thoughtful and kind. My sister had died, aged 34 of necrotising fasciitis (aka ‘the flesh eating disease’). She’d not been ill before Tuesday, died on Saturday under anaesthetic in theatre.

They had made plans to keep her in a coma for weeks had she survived to give her body a chance to recover. But in theatre she’d died. The death certificate stating septicaemia.

I called our parents, they came to the hospital. Later we all went to our separate homes. I picked up the kids and took them back to my house. And told them. Told two children aged 8 and 10 their mother was dead. Their father had left 7 years before and both had autism. Grief is different for autism. They just accused me of joking, asked ‘do we live here now?’ and then went to bed.

One size doesn’t fit all

When Eedy was 18 he was living in a flat with 1:1 support. He was there for just over a year and had two different ‘supported living’ service providers. Both had a ‘one size fits all’ approach to challenging behaviour.

I guess the fault really was with the commissioned hours from social services. On a 1:1 it’s extremely risky to have any sort of hands on intervention. So immediately Eedy was at risk.

When Eedy is stressed, anxious, frustrated or worried he is likely to hit out. Verbally and physically. Things were worse in the days of The Bill on television, as he would (in his world) become a policeman with the job of restraining his staff member.

When he lived at home things didn’t get too bad. When he lived in children’s services he learned from his peers. And added their misdemeanours to his own repertoire.

By the time he hit ‘transition’ his behaviour had escalated and his staffing numbers had reduced.

Eedy moved to a flat on the third floor – all very nice, with two bedrooms a kitchen/lounge and bathroom. He had 107 hours support a week and 7 sleep-in’s. So was always with a staff member. Except when times got bad.

The staff were instructed that they were to leave as soon as Eedy showed any form of agitation. Eedy quickly worked this out and did everything in his power to ensure the contrary.

  • If the staff gave an indication they might leave, Eedy would rush to the door and stop them leaving. So now he was holding them hostage in the flat
  • If Eedy couldn’t get to the door before they left he would run to the balcony and threaten to throw himself off
  • If the staff got out of the front door, Eedy would run to catch them and try to push them down the stairs

All seriously high risk events.

Yet the risk assessment continued to say that the staff must leave. If we’d had a chance to discuss things, if we’d been involved in the risk assessment process we would have been able to give examples from Eedy’s past that evidence that leaving him is the worse option.

Example 1

When Eedy was in children’s respite the staff told Mogs and I that all attention was to be withdrawn if he showed ‘behaviours’. Eedy duly attempted to throw a cup of juice over his sister. The staff indicated to us to remove ourselves, with the rest of the staff to the kitchen and lock the door. This incited more anger in Eedy and he raged and banged the door.

It went quiet for a moment and then more irate shouting, “you’ll have to come out now, as you’ll get too hot. I’ve turned up the heating!”

With a back door to the kitchen this attempt failed, so Eedy upped the anti. The next brief quiet moment was followed with the sound of fire alarms. He’d set off the call point.

As this was a council run centre, all fire alarms linked to the local fire station. Eedy successfully got us out of the kitchen, back talking and interacting with him and learned himself a valuable skill which has stayed with him ever since.

Example 2

When Eedy lived in a children’s home, again staff withdrew when he showed any agitation. The staff office was upstairs, and on one occasion he was on a 1:1, the other couple of guys he lived with had gone out with the other staff.

Eedy had already been up to the office and pounded on the door a few times whilst screaming threats, expletives and any other derogatory remarks he could think of.

The final trip upstairs was, by his standards, successful. “You’ll have to come down now, I’ve started a fire!”

The staff member reacted and found Eedy had put a tea towel into the toaster and turned it on.

More learned responses…

Currently ‘positive behaviour support’ is all the rage*. It’s in, it’s trendy. It is supposed to look at functional analysis. What does the behaviour mean?

Most ‘behaviours’ show either a need for something or a need to reject something. Pretty obviously Eedy is screaming ‘don’t leave me’. But hey, funding won’t allow the risk. Informing people that the risk just gets bigger falls on deaf ears. It’s a funding issue after all.

So, supported living wasn’t for Eedy. And isn’t likely to be in the foreseeable future. Certainly not with a company who fail to assess individual needs. He’s living in a small residential home – so there are staff available to step in, not aggressively, not in a ‘control and restraint’ sorta way. Just to be available to keep him safe. His ‘incidents’ have reduced in duration. True support would look at meeting Eedy’s needs and safety. Y’know that phrase.. they would be person centred. There are companies out there I would trust, but unfortunately the larger the company the more likely they would have blanket procedures in place. And that’s the only experience Eedy has had.

My lasting memory of supported living for Eedy was the day I got the call that Eedy has been unsupported for over 6 hours as Eedy would not calm and the staff had been banned from returning. I got there as soon as I could finish work. As I opened the door to his flat he was sat on his sofa in the suit he had worn to my wedding. After checking he was ok, I asked him why he was all dressed up. He answered me that when, some weeks previous, he had been cautioned by the police for assaulting his staff he had been told by the copper “next time you’ll be in front of the judge”.

As Eedy saw this as the next time. He had dressed in preparation.

 

*…No apologies for the pun 😉

Institutions

I remember being shown around a ward of a long stay institution as a student nurse. After being shown the office, laundry, dormitory and drugs cabinet I was shown into the dayroom. Thirty-ish people with learning disabilities sitting in chairs around the edge of the ‘day-room’. They were introduced, by diagnosis, by behaviours, and by any other oddities that made them stand out.

One lady was pointed out by name – “This is ‘Lindsey’, she has the voice of an angel.”

“Come on Lindsey, sing for Chrissie – she’s the new student”

‘Lindsey’, right on cue, sang…

“I’m nobody’s child. Nobody’s child
Just like a flower, I’m running wild
I’ve got no mummy’s kisses, no daddy’s smile
No body loves me, I’m nobody’s child”

Over the next few years, at the same institution, during my training I heard other ‘residents’ singing the same song, like an anthem. This was the first time I heard it, but certainly not the last. I don’t know if this ‘Lindsey’ had family who visited, cared for her or missed her. But the poignancy of the lyrics didn’t seem to matter. This was the Lindsey’s of the institution’s party piece and they sang on cue.

Even then, as a naive and very young student nurse in the 1980’s I found this disturbing.

Why the nicknames?

Throughout my blogs I’ll be sharing with you information about my niece and nephew. Both are in their twenties and both have autism – from one end of the scale to the other. They moved in with me when Eedy was 10 and Mogs was 8, after their mum, my sister, died. Mogs still lives with me and her brother Eedy has lived in a few different places, supported under the ‘social care’ bracket. I’m their auntie, next-of-kin, mother figure and advocate…

So, why the nicknames…?

They have autism
I have neuro-‘not-so’-typical
They like to play with the sounds of words
So do I.
I have no idea why we added ‘Eedy-steam-roller’ to the end of my boy’s first name. But we did and he and I found it the funniest thing. Eedy stuck, as a term of endearment. Representing fun, laughter, the good times, happy times.
My girl’s nickname is much more logical (as is fitting for her) Mogs, rather than the obvious.
Both work. Both maintain confidentiality. (Unless you know me and them). But good enough for the World Wide Web.

Mogs is able to, and has given her consent to my musings. So has Eedy, in fact, he’s really quite enjoying getting me reading these stories back to him. He gets this computer and web malarkey and is happy to be a part of it.