Home life

I get so proud of Eedy when he comes home these days. My weekly report from his care home show opposition, rebellion and down right bloody mindedness, but when he’s home we get a totally different person. Don’t get me wrong, he’s not unhappy where he lives (as far as I know), he sometimes chooses not to come home. Which actually helps me to feel he is okay where he lives.

This week we were informed of a safeguarding alert from the home relating to another resident, caused by Eedy – think of the most offensive words and insults you could throw and you wouldn’t be far wrong. But I’ve never heard Eedy swear. He’s never dropped the ‘C’ bomb to me, or even f-ed or jeff-ed. But I don’t doubt that he does!

Tonight at 8.40 he told me I was late with his tablets – those tablets that aren’t locked away, they are left on the kitchen side. I potted them up and told him what each is for. I then potted up his 10pm tablet and told him it’s ready for him to go get it when it’s time (‘cos he’s far more likely to remember it than me).

A little while later one of the dogs started getting restless. Hubby and I were sat in recliner seats, Eedy was stood rocking from side to side (as is the norm for him). Hubby looked up:

Hubby: Eedy – let the dogs out will you?
Eedy: Ok

A little while later –

Chrissie: Eedy – let the dogs back in
Eedy: Ok

All so normal – yet worlds apart from the ‘normal’ of the care home. We’ve just had a conversation about shopping tomorrow – Eedy has the choice of coming with us or stopping home alone. There is no risk (and no risk assessment). He’ll be cool. He’s 25 years of age and can use a phone if he needs to.

But in Social Care world he’s never left alone. His tablets are never left out and every prompt is translated by him as a nag. Before coming home he hadn’t washed for over 3 weeks. The area manager asked him if he bathed here. He replied ‘Chrissie wouldn’t let me come downstairs if I didn’t wash’ – not true, but happy he respects my standards! When I raised it on the way home he said ‘you can’t make me’ I replied that I neither couldn’t nor wouldn’t but, we are family so why would we engage in such fights? He didn’t have an answer. And he’ll shower tomorrow morning before I see him. Without doubt.

How social care lets down the introverted carers

It’s nothing to do with the stereotypical characteristic of ‘being British’ it’s about personalities. It’s not even about ‘not wanting to make a fuss’. It’s about patiently waiting for the professionals to do their job. Unfortunately, when the social workers are overstretched and their job becomes a continual fire-fight the introverts are left behind. The crisis has either passed, or become the norm.

I speak (well, blog) only from my own personal experience. My girl has a social worker – she’s ‘been in the system’ for the last 14 years (children and adult learning disability services) since her mother (my sister) died. Her main disabilities are due to sensory and processing differences. She’s not ‘complex care’ or ‘challenging behaviour’. No cause for alarm there then. My husband and I are both 20 years plus working and training social care staff – so we know the system.

In the last 14 years the social work team have seen my girl and me probably about 8 times. And that’s being generous. Certainly not annually – in fact she hasn’t seen a social worker for the last 4 years. There was a three year gap before that, and eighteen months before that….

It’s scary how the potential for issues to escalate is not addressed, how support is neglected unless ‘bumped’ up the list of priority (or not).

At one meeting (an emergency planning meeting for my nephew) I was read a report stating that I was demanding and the social worker reported that she was highly concerned that ‘[Mogs’] placement’ was breaking down – “not if, but when” was read out, with dour face totally unaffected by my tears of anger and disbelief.

I was read this report when my girl was 9 (some 9 months after she moved in with me) but no one had visited us in months, either before, during or after this report was written, or even in the seven months following it’s public airing…And this was not long after the horrendous death of Victoria Climbie, and the atrocious court case that followed. During this time social services talked at length about ‘lesson’s learned’. And although Mogs wasn’t (in my opinion) at any risk, her file was full of opinionated comments relating to my then husband’s mental ill health, my (alleged by them) continual financial requests (which were in fact for a kinship allowance) and ludicrously about me being seen driving around town in a brand new green car! (Of which never occurred – unless I have a double).

I’ve had numerous occasions when I’ve felt I don’t know what to do, I’ve raised concerns regarding potential serious safeguarding issues, we’ve had educational and currently have major employment issues. I’ve allowed the system to ‘put me off’. And feel we’ve become the bottom priority. Because I’ve spoken, hinted, made concerned comments and not complained, shouted or screamed. Not because I don’t think I need to, but because it’s not my way. I’m essentially an introvert.

I don’t ask for help in most areas of my life, my husband has to work out when I need support; he’s become the expert in offering. That’s the key really. Being available.

Mogs is an adult now and doesn’t want us being involved in everything. She’s her own person. But she still needs support. It’s pretty devaluing for an independent minded 23 year old to still have to run to us for her support in matters of employment seeking and benefits, but she has no choice. You see she’s an introvert too. And she hasn’t learned the effective example of ‘how to do it’ from me. The British social care system is less ‘if you don’t ask you don’t get’ and more ‘if you don’t scream loudly, make threats, link to potential safeguarding, court cases or infer cost implications then you don’t get’.

But then again, if you do scream loudly, make threats and keep shouting you’re a troublemaker, a ‘difficult’ parent or just known as a total pain in the ass who needs to be suppressed. And there is one heck of a lot of evidence out there to show the extremes the system will go to in order to suppress those that seek justice…

Bit of a lose-lose situation really.

Late night chats

I used to get hugs from Mogs when she went to bed. But they were ‘rote’ learnt hugs, you know, like hugging a plank of wood. Something she had to do. Because we’d said it was the right way to say goodnight.

Now, every now and again, I get late night talks with her. She’s pragmatic, sensible and balanced. An excellent sounding board and a bloody good listener.

Funny how things change. At the first ‘growing up’ opportunity Mogs dropped the hugs. Initially beginning with her manipulating a non-bedtime bedtime. So she could get away with it. Then the “g’night” would be sounded as she was already half way up the stairs.

Now it’s an adult “night then” on the nights we’ve spent talking. They are becoming more frequent. I love these. It means we’ve chatted, caught up and I’m the one really valuing our discussions, adult to adult. Her autism means she doesn’t overdo the words (unlike me). She listens, gives her opinion, but does not advise.

Something I need to learn more of.

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 😉

Transition

I went though a really tough time when Eedy hit 18. I dare not think how it was for him. That bloody awful word ‘transition’ (it’s a fine word in ‘normal’ life, but when applied to social care it becomes an epiphany of fear, worry, anxiety and stress). OK, so I have more years experience of the system than he has years on this planet, but working with adults with learning disabilities I’d never experienced ‘transition’ and never before in a parenting role.

‘Transition’ is an odd terminology, in my experience it is more likened to the guy with a disability suddenly being ripped from what they know and thrown into the unknown with no lifebelt, no parachute and no safety net.

Eedy has a diagnosis of autism, learning disabilities, microcephaly, adhd, challenging behaviour and various ‘oppositional defiance’/’ptst’ labels (depending on the diagnosing practitioner). Quite a placard to carry around.

He’s actually a really cool, loving and funny dude (thank you Sara Ryan for the terminology, it suits him perfectly!), a bit of a ‘job’s worth’ and a firm believer in righteousness, justness and playing by the rules…as long as you say exactly what you mean!

So, ‘transition’. Eedy hit 18 and moved into adult services. Suddenly he had to give permission for people to speak to me and to involve me in his life. Rather difficult for Eedy as he rates me highly. Due to this he thinks if he knows (or thinks) something then I know what he knows. (And on occasion I do). But…When he is anxious and ‘challenging’ *Staff speak* (or as he’d put it ‘having a bit of fuss’) and he’s asked, ‘shall we inform your auntie?’ He’s gonna say ‘no’. Because I should already know!

Fast forward 12 months. Eedy hasn’t shaved, washed, showered, bathed or had his toe/finger nails cut for at least 6 months (and two service providers). He is sporting long tufts of facial and head hair. His shoes hurt because his toe nails are so long, his behaviour appears to be out of control. He has a police caution for assaulting his staff (and realistically should have more). He won’t phone me or visit because he has had it stressed to him that ‘he is an adult now’. And he has taken that literally. Physically and emotionally he is a wreck.

I’ve been in a hard place too, I’m his auntie, not his mother, so am struggling with the emotional trauma of everything that’s past and present.

Eedy being an adult was a ‘transition’ for me too, but not the one I had expected. I don’t know what I thought and 6 months in, when Eedy’s service provider changed to the one I worked for, I innocently expected great things. But no…I was subjected to secret meetings, the unavailability of care plans, risk assessments, incident reports and at one point stumbled upon Eedy’s file, poorly hidden in a spare filing cabinet away from all the other files. I then, and still now have a problem distinguishing confidentially from incompetence. After all I was employed as a senior team member who should professionally have this information to competently be ‘on call’. (Regardless of involving family members in a person’s care – but that’s another story).

So, Eedy’s ‘behaviours’ began to spiral out of control, the environment he lived in was totally unsuitable and his support staff were not given any training in how to work with him. Suddenly, as ‘next of kin’ we were back in his life. Emergency meetings were held, Eedy not attending because he said he was ‘too busy’ – his words for ‘I don’t want to/don’t understand/feel pressured’ etc.

The need was established for an admission to the local assessment and treatment unit. But how would he get there informally?

My husband and I stated we would get him there, we directed his support organisation to remain totally uninvolved and on said day we went to his flat.

It was a tip! The flat was not a therapeutic environment for someone to gain in self-esteem or confidence; it was a visual confusion of the inside of Eedy’s head. Paper, writing, toys covering all floor space – wherever you stepped you’d be stepping on Eedy’s obsession with ‘road closures’ symbolised by bits of paper that only he understood. If mind-shut-down could be symbolised in paper, then this was staring you in the face (and he’d been living like this for months).

We spoke to Eedy candidly and sensibly, an hour and a half later he was agreeable to ‘going to hospital’. Of course I used my influence, Eedy was doing what he thought I wanted him to do. The hospital sussed this, and within two days of admission they decided to section him. There were going to be no issues regarding mental capacity here!

The Assessment and Treatment Unit was a watershed for Eedy removing the pressure he had been under, but once there, they pulled him off all his meds. He was climbing the walls, running off and attacking people. The section order was put in place. He was put back on the same meds, he calmed. The section was removed.

I served notice on his tenancy and his support organisation. He was now a bed-blocker with no provider and no home. We had meetings virtually every other day. To my knowledge he didn’t have any other assessment except the removal and reapplication of drugs and a sensory assessment to evidence the high level of tactile defensiveness that he already displays in everyday life. Two months later we moved him to a residential home where he would live with 2 other dudes.

We chose residential because ‘supported living’ had let him down. They had failed in recognising who Eedy really was and what he really needed. In reality it wasn’t supported living that had let him down, it was the management of the staff team, the incompetence of the assessment process and the failings in understanding Eedy’s needs.

Guess what? Good verbal communication does not mean the person has good comprehension or coping skills!

In Eedy’s case when he is stressed, overwhelmed or anxious, physical intervention isn’t the last resort; it’s the least traumatic action. When he is feeling loss of control he needs a team around him who, for a short period of time, will take the control from him, and give it back when he has had a chance to calm down. We’re not talking pin-down or prone restraint – just firm holds to stop him damaging himself or others.

Apparently that wasn’t available in supported living. All they had in place was to walk away.

… And leave him to spiral out of control.

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.