What do you see?

Of course, I know the context. I know that I came to work feeling a little down and that Isaac must have been able to tell. It makes me question the signals he picks up on. Isaac’s team are constantly unconsciously analysing all the little indicators he is putting into the world, what his slight movements and variations in sound and expression could be trying to portray.

I wonder what signs he is picking up on from us? I didn’t arrive and say to Isaac ‘I’m feeling a little low today mate, you’ll have to bear with me’…or then again, I might have done, but he wouldn’t have known the content of my chatting away to him, as I always do. So, what told him that I needed a bit of emotional support today?

Was my posture more slumped than usual? Was my tone less engaging? Whatever it was Isaac had the emotional intelligence to notice that something was wrong and to want to do something about it.

We often hold hands. Isaac loves to feel connected to the people he feels close to and will frequently reach out for reassurance, to get our attention or just to be social. But today it felt different. Today he stroked my hand with intentional slow movements. Today he smiled gently as we lay on the mats in his room. And today I felt that he showed me that he is there for me too. We are more than just a carer and client. We are friends. 

Becky

GOING OUT

Crunching through the leaves, I am content for a while.

Covid still reigns as the summer seeps into autumn and the trees let go their leaves, colouring the pavements brown, yellow, red.  And the sky reflects the tarmac street, enclosing us in winter’s grey at dusk in a city suburb. 

We – my son (a man grown) his sister and I – walk the streets, our new ‘going out’ in an increasingly alien world.  Retreating from the on-coming people and indignant at their lacking compassion, I bump my man-son down the high curb in his grey/black wheelchair. He screeches his displeasure at the drop.

The people go on by; one smiling a thank you while the others, eyes averted, avoid our gaze. We walk on, listening for cars that might come up behind – and with the people safely distant, we reclaim our place upon the pavement and leaves.

THE DAY MY SON ANSWERED ME

I’d almost convinced myself that the cat’s recurring interest in what lay under the cupboards was just normal behaviour; not evidence of the rodent he’d lost the day he crashed through the cat flap mouth full of rat, and laid it at my feet. He’d stared astonished as the rat flipped onto its feet and sprinted for the kitchen where it frantically wriggled its fat rump under the impossibly tight gap of a cupboard.

“Bloody hell, Louis – not again,” I exclaimed. “When will you learn that they play dead!?”  

When I’d finished dismantling the kitchen and found no rat, I decided to call her Jody; to remind us that she was merely a creature seeking to survive and was understandably terrified and therefore hiding – too well. Having kept pet rats in the past I was not as freaked out as some people might be. I knew rats to be intelligent, playful little creatures, except when attacked. I left the back door open and told myself she’d get out at a moment of her choosing. She chose alright – to stay.

The house was abundant with resources and the best was in the kitchen. There was food, J-clothes and paper towels for bedding, a passage behind the cupboards, and a cavity into the wall that she’d chiselled out for a sleeping hole. It was warm and dry; she need not risk the danger outside. She could smell the cat. At night she gnawed through the back of cupboards and replenished her supplies.

It was the rank ammonia smell and the tiny holes nibbled through the dry food packets that alerted us. We were still shacking-up with a rat six weeks after the cat had lost her.  That night I opened-up the spaces under the cupboards while the cat hovered, sniffed and stuck his head under them.

“Do it properly this time!” I admonished as I went to bed.

When day arrived, I scanned the kitchen for a dead rat and was disappointed. Walking into the adjoining room I stopped. The cat sat upright, silent, eyes fixed on the wooden box across the room.

“So, Jody is out.” I murmured.

Safety lies in small dark places she thinks.

Shite.

I could hear the irritated tones of my 24-year-old son Isaac, awake too early.

“Not now Isaac.”I frowned running to his room. Picking up a CD I held the shiny blank side out to him asking hurriedly,“Music?”

He looked at it from the bed and reached out to touch it; his way of indicating, ‘Yes’ he did want the music.

“Yes.” I echoed rather too loudly so that he gritted his teeth and growled back at me.

Isaac continues to confound me with his ability to learn and I feel a tinge of guilt at the historic lack of expectation, from myself, his teachers, everybody. This is the first time, however, that I have felt it imperative to speak to him and to have him understand and answer me (preferably to the affirmative). I felt relief as we understood each other. I couldn’t explain the rat of course and if he had refused to touch the disk, I have no idea what I would have done.  

Pushing his door shut, I ran back to the dining room and glanced at the clock on wall 7.30am – half an hour before Becky (his PA) would arrive.

“Live rat!”I shouted up to Dad, Ewen, before he could come down.

He claims he has a phobia, he does, it’s inconvenient!

He yelled 16-year-old Zeina awake with a “Go help mum!” and shut himself in the upstairs office.

Zeina, usually a slow riser was already standing at the bottom of the stairs, peeping round the doorframe as I closed Isaac’s door. I armed her with broom and shield (canvas board) and began blocking off the sofa, dragging the boxes away from the corners, and arming myself. Very slowly, I reached out and shifted the box, just a fraction and suddenly everything was in motion: me up onto the box, the cat after the rat, the rat under the sofa and Zeina darting back behind the door frame. Then stillness, except for our heavy breathing, all four. And so, it went on, me stepping from chair to chair, to box, to sofa, with broom and shield in hand. Zeina guarding the stairway in the vague plan of ‘directing’ fat Jody down the hallway to the open front door. 

The cat meanwhile slunk, surreptitiously, down the hall and sat just outside the door looking back critically on the chaos of our noisy hunting.

Our triumphant cries aborted as Jody, finally nearing the front door, realized the cat, flung herself at his face, then wheeled around and shot back inside!

The cat, taken aback by her fierceness, sauntered off ignoring our shouts to “Get back in and finish the job!” feigning a deep love for a lavender bush.

I turned my ear to listen for Isaac and registered his still contented drone.

Good, I thought, turning my attention back to the task.

We took up our positions again and, leaning forward from the safety atop a chair, I aimed the broom into the corner where Jody hid. A shiver ran through me every time she squeaked, too loud for such a small animal. We squealed ourselves as we batted her away when she flew at us in terror.

When, finally, she streaked through the now unobstructed front door, we held our breath; but this time she continued out. The bright day was preferable to the violence within.

When Becky arrived at the door in sparkling pink cycling pink helmet “Why is Louis hiding under a car?” She wondered.

We babbled out our story tripping over each other’s sentences in adrenalin-soaked voices, as Isaac’s still contented noises confirmed he was enjoying the music.

By Sandra

PAINTING IN THE GARDEN

Back in May we had a lovely time in the sunshine being taught this painting technique by Zeina. Zeina took all of the photos below and they really capture how much fun we had and how interested Isaac was! Inclusion doesn’t always mean you’re all engaged in an identical activity – Isaac really gains a lot from observing other people and when he was used to the idea of the activity, he was included in a way appropriate to him.

UNFAMILIAR

Often people who don’t know Isaac mistake his grimacing angry sounds for smiling and happy vocalisations. For the people who know him well this can be frustrating – why don’t people understand him like we do!? Isn’t it clear that when his forehead has that slight crease and his eyes look that little bit more strained than usual, he is unhappy? Can’t they tell that when his excited humming reaches just that bit too excited, he is overstimulated and possibly even in pain? Isn’t it obvious when he is zoning out of an experience as opposed to actually being sleepy?

Okay, so maybe it’s not fair to expect someone who doesn’t know Isaac personally to recognise these things. So, we explain and try our best to give people interested in Isaac thorough explanations of his behaviour and communication so that they can understand him better.

Sometimes people are put off by our (probably overly extensive) explanations. I can feel people thinking that I’m being overbearing. But it’s so hard to be succinct when Isaac’s behaviour can be so complex! And we never want to generalise an explanation which may not be true in all contexts. I used to go with ‘high pitched sounds tend to be negative, low pitched sounds tend to be positive.’ But recently Isaac has developed a low-pitched sound relating to pain. Would this go unnoticed with people who don’t know him well? I’d like to think not because the sound seems so obvious. But if I’ve told someone unfamiliar that low pitched sounds are good then who could blame them?

Don’t get me wrong – I’ve been on the other end. I remember working with a young lady in a day service setting. One day she suddenly became what looked to me like agitated, hands and arms flailing, breathing heavily and jostling herself forwards and backwards. I tried my best to use a soothing voice, to help to calm her down and let her know I was with her, worried that this was possible seizure activity. Only to find out from her home carers later that this was her way of expressing joy and excitement! And there I was shushing her, stopping the activity and just generally killing her vibe. I felt awful and relieved. And then more awful when I realised, I’d been working with her for months and this was the first time I’d seen her that happy. And then even more awful thinking about what the home carers must have thought of how she spent her time with us if that was her first joyful outburst.

Similarly, I remember Isaac attending a day centre for a number of weeks, when the staff were suddenly concerned and asking Isaac if he was okay. Maybe he’d finally adjusted to the environment or something exciting or interesting had happened and he’d let out a loud bellowing ‘hmmaaaaaahhhhmmm’ beating his chest in glee. I realised that these people had never really heard Isaac happy and content before. They thought that his screamy, angry, noisy demeaner was his normal. How sad! He is such a wonderful person to be around and that representation did not do him justice! But it’s also scary for us. Most of those staff would have read a communication passport for Isaac, but without one of his home team they seemed to have assumed his upset was his normal. Would he have been comforted, offered familiar entertainment or communicated with to try and help him adjust to this new environment by people who didn’t know him? It seemed more likely that people became accustomed to hearing his distressed sounds.

I guess my point is that you can’t learn familiarity with someone, it takes time and patience and understanding. We can never assume familiarity before meaningfully developing it and it is always better to discuss and question our interpretations. Most importantly I think about how familiarity is a two-way concept. Generally speaking, staff in this field have the best of intentions. But all Isaac knows is that he doesn’t know you yet. He doesn’t know what to expect from a new person, and sometimes the rules that apply to the people that know him well don’t apply in wider scenarios, which must be very confusing and distressing for him. We need to value the insight of those most familiar with the people we support, whether that is family or staff. The most valuable thing you can do for Isaac is genuinely try to understand him.

Rebecca Downey

WE ALL NEED CARE

This Mental Health Awareness week I am worried that, despite the theme of Kindness, self-care will continue to receive more emphasis than collective care.

Although it is important to make time for yourself, to exercise, eat a balanced diet and keep up good hygiene, I am worried we are putting too much focus on a very small aspect of wellbeing and care. Self-care dominates our conversations about care, websites and social media pages are already showing a spike in advertisements for wellness kits and products. This is understandable, many of us are isolated due to the coronavirus lockdown, and are grappling to feel more in control, but now more than ever, it’s important to spread the message that you can reach out: you do not have to go it alone. If you need to, please call someone, ask for help.

We all need care. We struggle to accept this, but it’s undeniable that throughout our earliest years we are dependent on the care of adults, and if we are lucky enough to live to old age we will likely depend on the care of others again. It is easy to spare little thought for care, and for those of us with additional needs, health problems and disabilities, who depend on care daily.

We would like to define ourselves as independent individuals, because we are a society that values self-reliance, and ambition. We are taught to confuse kindness with charity, that a productive member of society is self-made and asks for little. Self-reliance is an important quality, but the idea that anyone is entirely self-made, that anyone can make it through life without community, assistance, tutorage, or care is a complete fallacy.

If this pandemic has taught us anything it is that care should be at the core of our society and government policy. It has taught us that care should not just be the responsibility of one individual over themselves, but it is a duty we have for one another. This is represented best by our health and social care services that have held us afloat during these incredibly difficult times, despite lacking in funding, PPE and testing.

The latest speech from our prime minister emphasised the importance of individual responsibility over a duty to care for our most vulnerable through sensible policy and collective action.

Despite this, despite the grief and fear felt through our communities, this pandemic we have learnt the true meaning of care. Communities have come together in collective action: offering mutual aid, ensuring the most vulnerable among us are looked after, volunteering at foodbanks and within the NHS. There are many health and social care workers who continue to care for us despite the detrimental effects on their own health and wellbeing. This is care, it is a coming together, it is action.

We are discovering how collective care can keep us strong and provide fulfilment and positivity in the most difficult of times. We do not have to face this thing alone. Care is complex, we have a long way to go in reframing how care is viewed, in providing adequate care and respite to those who need it, but this is a good place to start.

Find your mutual aid groups here or by doing a quick Facebook search:

Covid Mutual Aid

If you are a carer in need of more support:

Please visit Carer’s UK

Or call Mencap’s helpline 0808 808 1111 (Monday to Friday, 9am to 5pm)

If you are a care-worker in need of support:

Visit Unsion to discover how a Union will help protect your worker’s rights

If you are an NHS staff member and in need of support:

Call 0300 131 7000 (7.00am-23.00pm) or Text: FRONTLINE to 85258 (24/7)

If you are struggling with mental health you can call:

Samaritans on 116 123 (free 24-hour helpline)

Or Rethink Mental Illness on 0300 5000 927 (Monday to Friday, 9.30am to 4pm)

Esme Brown