Thursday, 4 August 2016

Mencap Family Blog

Back in 2009, disability charity Mencap asked me to write a blog for the family section of their website.

It was published in several parts and covered my brother being born, right up to his leaving home. It detailed our difficulty accessing basic things like schooling, post 16 educational placements, getting a social worker, accessing benefits and ultimately securing him a future.

I went to the site today to get the link. I wanted to post it online as today is my brother's birthday. Sadly, it wasn't there.

When the new site was launched, not all content was migrated across.

It's a shame as I think my blog would be a useful and relatable read for any family with a learning disabled child. And also more broadly, for people with no experience of disability, to understand the stigmas faced and the challenges put in your way.

So I am re-posting it here:

MENCAP FAMILY BLOG


PART ONE: INTRODUCTION


I was two years old when my parents introduced me to my new baby brother, Nick. I can't exactly recall my feelings and reaction - I was too young - but from looking at pictures taken around that time and from speaking to my parents, I think I generally liked and accepted the idea of having a younger sibling. Although I did experience the usual jealously that older children feel towards what they consider as direct competition for their parent's attention. And was, I'm ashamed to say, caught poking, pinching and teasing him a few times in his first year!

I'm told Nick was a very docile child - no crying, no temper tantrums. Every parent's dream really. But after a while this lack of activity became indicative of a problem with his development and started to become a worry for my mum and dad. Nick wasn't attempting to talk, crawl or walk. He was floppy, and had no reflexes, and my parents had no idea why.

I don't remember being worried. Not only was I too young to appreciate what was going on, but, jealousy aside, I was generally reveling in having a new and very compliant play mate. I would put Nick in my doll's buggy and push him around the garden, I'd prop him up with cushions and play games with him; overall I liked having a little brother to play with and boss around.

Around this time my parents took Nick to see a doctor and he was diagnosed as being brain damaged, most probably due to oxygen deprivation at birth. This made sense to them. The birth had been difficult, ending up with my mother being sedated and my father being forced out of the room as chaos erupted. But despite all of the obvious panic, Nick had been handed over to my father afterwards without comment. Nobody mentioned the fact that he had almost definitely been brain damaged by what had just occurred, and my parents took him home blissfully unaware of any problems.

We'll never know exactly what happened, by the time we found out about Nick's condition, the hospital had closed down and any medical notes relating to Nick had been destroyed. But regardless of how and why it happened there was nothing anyone could do about it. All my parents could do now was to work out what to do next - no mean feat given the complete lack of support and guidance on offer.

The first time they came up against this was when the doctors who had diagnosed Nick as brain damaged informed them that he would never walk or talk - case closed. My parents suspected that this was not true, and that he was being written off as not worth the effort of physiotherapy and treatment - they were right, but more of that later. It was clear that it would be down to us, as a family, to develop Nick to his full potential.

I often wonder what would have happened to my brother if he'd have had different parents. I doubt he would be anywhere near as able as he is nowadays. Many parents would have listened to the doctors who were describing him as a lost cause, and treated him accordingly. Thankfully mine were determined that, even if the best of his ability was minimal, he would attain it. And in the end Nick did more than this - he excelled.

Case in point; when we were trying to place him in his current living arrangement, he was considered at first glance to be too able to qualify. It was only when he was fully assessed that it became clear that he was in fact profoundly disabled.

The reason for this confusion was down to Nick's demeanour. He had been brought up in a household where he was encouraged to behave appropriately, to speak properly, and to use a full vocabulary. All of which served to conceal many of his limitations. It took many years to get him to this point though.

When we were told he wouldn't walk my mum started working his limbs and tapping his reflexes until he slowly began to crawl. When we were told he wouldn't talk, my mum used a method found in speech therapy where something sweet like yoghurt or sugar is placed around the mouth to get the person to exercise their tongue. This worked tremendously well, and Nick's tongue went from lolling about at the side of his mouth to being much more controlled. Then by constantly speaking to him, reading to him, and playing with him, we got him to talk.

Eventually he could walk, run, play sports and chatter endlessly - something that my family are collectively very proud of.

It was around this point in his development that my jealousy of Nick dissipated somewhat. I think this was because my parents cleverly turned a situation where I could have felt left out, into a situation where I was fully involved as they enlisted me to help them look after and develop him. I remember fetching nappies and baby wipes for Nick, and being given the unusual job of throwing soft toys at him to get him to blink and react. It sounds bad when you say it, but it really helped to make him more aware of his surroundings and fine tune his reactions.

All of this caused me to feel very responsible for Nick, and I have remained fiercely protective of him to this day.



PART TWO: CHILDHOOD


My parents didn't have any more children after Nick, so growing up with a disabled sibling is all I've known. I used to wonder what it would be like to have a ‘regular' brother or sister, but after a few visits to friend's houses, seeing how fraught their sibling relationships were, I soon dismissed any fears that I was somehow missing out!

More than that, I actually started to feel lucky to have Nick as my brother.He's so far removed from the stresses, strains and pettiness of everyday life that spending time with him is actually something of an escape from it all. He has no issues, no malice.

The only time anything approaching sibling rivalry occurred between us was when my parents were making a fuss about me getting my degree. Nick went to his room, got out all of his school certificates - he used to get certificates for everything from putting his coat on to being good - and laid them out on the side. He then pointed out that I only had one certificate whereas he had loads.

Not that our relationship has been without its challenges. When I was a child I did sometimes find it hard. Nick's disability meant that he had a childlike tendency to do whatever came to mind. He was not fully able to weigh the consequences of his actions, or judge the rights and wrongs of situations, and so ended up doing things like scratching all of my dad's rare vinyl records, getting up in the night and eating all of my Easter eggs, opening my Christmas presents, or ransacking my room. I reacted to these incidents as a normal child would; chasing him around angrily then running to mum to complain about my annoying little brother. But I eventually learned to be patient with him.

I recently remarked to my mother that I wish I had always been as patient with him as I am now, and feel guilty for ever telling him off or arguing with him. But she said that she was glad I treated him like a ‘normal' sibling, because it had ultimately developed us both for the better. I became more tolerant and compassionate, and he learned about behaviour and boundaries - boundaries that he would have to observe when he was exposed to the everyday world, where exceptions might not always be made for him. And this soon started becoming an issue.

Nick's childlike behaviour was accepted when he was an actual child. But as his mental age leveled out, and his outward appearance changed to that of a teenager and then an adult, pretty soon, we were getting disgusted stares rather than adoring looks. Previously if he had spoken to someone at random they thought nothing of it - that's what children do. But when he did it in later years people looked downright scared.

As a teenager I remember being torn between feeling mortified at my brother embarrassing me in public, and feeling protective of him in the face of all the comments and stares. The latter instinct always won out of course, but I recall that it was very trying in my teenage years, desperately wanting to look cool, whilst running after my brother in the supermarket to try and retrieve other people's trolleys he had wandered off with, or stop him talking loudly to random strangers.

The only thing that I sometimes feel sad about is that I can't have a ‘proper' relationship with my brother. Don't get me wrong, I have a very special relationship with my brother, but it has its limits. Nick, although fairly expressive given his limitations, sticks mainly to repeated phrases and mantras. You can't have a conventional conversation with him, or truly get to know him, so it's hard to connect.

If you watch the film ‘Rain Man' you'll get the idea. The first time I saw that film it was a revelation. It was like watching a microcosm of my relationship with my brother. It charts the story of a man who, upon his father's death, discovers he has a disabled brother; and then finds that all of the inheritance has been left to him. He takes his brother out of his home and refuses to return him until he gets half of the money. As they drive across the country together he goes through the various stages of forming a relationship that I did; not understanding his brother's quirks and needs, getting frustrated, coming to realisations about how to deal with him and talk to him, and ultimately forming some kind of bond. This bond is largely one-sided as it cannot be fully reciprocated.

Having said that, you do get the occasional glimpse of the person behind the disability and feel you have connected. There are one of these moments at the end of the film and my mum and I always cry at that point. I have them occasionally too - Nick will turn to me and say something outside of his routine, something cogent and relevant. I feel very lucky when that happens.



PART THREE: ATTITUDES


I've already touched on negative reactions to my brother, but wanted to go into this further.

Having grown up with Nick it's obviously very hard for me to understand why he would elicit a bad reaction from anyone. He's loveable and sweet; harmless at worst!

Yet in the past we've had neighbours who have hated him. Who have openly said they didn't want a disabled person living next door to them. These same neighbours also objected to his school bus stopping in our street (on the grounds that it contained a group of disabled children) and called the police on him when he accidentally kicked a football too high and it went over their fence.

I was sometimes teased at school about my brother, although I was unaffected by this. I never got upset in the way the bullies intended, just angry at their complete ignorance.

Even in my adult life I come across people who think it's funny to make fun of disabled people and use the words ‘mong' and ‘spastic'. Something I am completely incredulous about and have worked hard to stamp out wherever I find it. The reason I mention all of this is because I wanted to illustrate a point.

Above is a picture of my brother on his first day of nursery school. I may be biased but I think he looks adorable! On the same day as this photo was taken, my mum was standing in the queue at the nursery school as the other parents stood around were discussing how they didn't want disabled children joining the nursery school and didn't want their kids being forced to mix with them.

Now look again at that photo.

I think it shows a great contrast between people's attitudes to the idea of disability and the reality of disabled people.

It also gives you an idea about what it's like to have a disabled family member. You can see that they're adorable, but other people seem to shun or actively dislike them. It's hurtful and confusing.

Incidentally, the kids at the nursery that were permitted to mix with my brother absolutely loved him and would constantly knock on our front door asking to play football with Nick. They also grew up having no issues with disabled people. Perhaps if all kids mixed with disabled people from an early age attitudes would improve.



PART THREE: TEENS & SCHOOLING


Nick started off his education in a ‘normal' school. This school had a special opportunities unit, but at break time and in some classes he would mix with all the non-disabled children.

However it was at this point in the 1980's that schools started to become targets driven, and we were told Nick had to leave as he was dragging these targets down. The other issue that influenced this decision was money - something that would come to dictate Nick's life and the opportunities available to him at every turn. It was costing too much to give him the attention he required; he needed to be moved to a special school.

The school that he was offered (on the grounds that it was local and therefore within budget - money again) was wholly unsuitable for him. My parents went to view it and found it to be more like an institution than a school. It was silent, except for the occasional sound of locks and bolts as secure doors were opened and shut. There were no pictures on the walls, no evidence of school life.

My parents were taken into what would have been Nick's class; a dark room containing half a dozen children all in wheelchairs. In most cases they were strapped in with helmets on to stop them banging their heads. They were completely unaware of their surroundings and didn't look up once. At this point my mum started to cry and my dad said there was no way his son was going to this school. And so began a lengthy struggle.

The local authority was insistent - this was the school Nick would attend. But my parents had researched a much more suitable alternative and put it to them that he should go there. There followed a number of meetings with the local authority, social workers and teachers. Each time my parents went to one of these meetings there were more people on the panel. In the end there were a dozen people sitting in a horseshoe formation surrounding my parents. They were clearly trying to wear them down.

They were told it would be too expensive for him to go to a school any further away - money, yet again! Plus transport would have to be arranged, and that would cost more money. (We later found out that the school bus Nick would catch to the school my parents wanted already went past our road to collect children who lived right near us)

At one point they were accused of being "in denial about having a disabled son", a statement which demonstrated the total lack of understanding at work. My parents, like any parent, simply wanted the best possible education and school experience for their son, whose disability they were fully aware of. The school my parents had suggested for him was a special school, not a mainstream one. And it was a special school with a lively atmosphere and children who would be suitable peers for Nick.

During the final meeting they were told that their case would be taken to the Secretary of State if they did not comply. At which point many parents would have become intimidated and stopped pursuing matters. Thankfully my dad is a very resourceful and clever man, and he had done his research - "You don't take me to the Secretary of State - I take you to the Secretary of State" he said.

The meeting was halted and my parents were sent outside whilst the panel regrouped. They probably hadn't banked on anyone actually reading the complicated legal small print.

The headteacher of the mainstream school Nick was currently attending stepped outside and said "Leave this with me".

Later that day they got the call. Nick could go to the school my parents had chosen for him. Could he start on Monday?



PART FOUR: COLLEGE


Nick really enjoyed his school life. He had lots of friends, very good teachers and was given an excellent education. The lessons, although designed for special needs children, had to take a nod from the National Curriculum and as a result he did music, history, cookery and even ended up having French classes.

Whenever I take him out for a drive - his favourite thing to do - he'll still give me directions in French: "Tournez a droit, tournez a gauche, allez tout droit" He finds it hilarious for some reason!

Anyway, by the time he reached 16 my parents were starting to think about bridging the gap between school and his permanent future, with a further education placement. They asked his school what was available and were given information on special needs colleges. However when they contacted these colleges they were informed that the entry process should have been started 2 years ahead of time, and not 1. There were now 3 places left in the whole country - which could go at any time - and they could only be taken up after a lengthy assessment process.

My parents felt let down - again.

As I said in my first blog, the families of disabled children receive little or no formal guidance. They have to find everything out for themselves. And in this case, find out the hard way.

My parents didn't learn about attendance allowance until my brother was 7. They were at the birthday party of a friend of my brother when they heard someone mention it. My dad assumed our family weren't eligible because nobody had told him about it - my parents weren't contacted by social workers at all until Nick was well into secondary school.

It turned out Nick was eligible, and my parents had missed out on seven years of payments which couldn't be back dated. But I digress.

With only 3 places left mum and dad had to move fast. The first step was to formally reject the local college that was being suggested on the grounds of, you guessed it, cost.

This college was wholly unsuitable. It was not a special needs college. It was a ‘normal' sixth form college where special needs children took a few classes. Thankfully the case was easy to argue this time. Nick's teacher came to collect him from this college one day and found him using a saw, totally unsupervised. Case closed.

With the unsuitable placement rejected my parents sent him to a special needs college for an assessment - which he failed.

At the meeting where my parents were informed of this, my brother was heard to say "I'm stupid". This was quite telling - Nick has very high self esteem thanks to our constant positive reinforcement, someone had knocked it - and it all unraveled when my parents were shown the hectic timetable that had been drawn up for him - which totally went against the instructions they had left on how to get the best out of Nick. The experience had obviously overloaded him, and if Nick experiences sensory overload he can't function.

When the man assessing Nick informed my parents that he "wouldn't stay on task" they realised to their dismay that he had not been assessed properly and was being wrongfully rejected for it.

Half way through this meeting a man knocked on the door and asked if he could sit in. This man was another teacher/carer at the college and turned out to be our family's guardian angel. He had seen Nick during his assessment and must have realised that his potential was not being properly tapped. He pushed for another review, taking into account Nick' complex needs; Nick passed. Thanks to that man Nick had a wonderful three years, living away from home in preparation for his adult life.



PART FIVE: ADULT LIFE & THE FUTURE


Even when Nick was a very small child, my parents were thinking about his long term future. From what would happen when school ended, right up to what would happen when they died?

When it came to me they didn't have to worry (too much!) I would leave home, get a job and make my own way. But this wasn't an option for Nick, and they had visions of him having to stay at home for the rest of his life.

It's not that they didn't want him to stay with them. Every time they dropped him off at college my mum would cry all the way home! But they thought, quite correctly, that it wouldn't be fair on him to remain at home forever. They also thought that it wouldn't be fair on me to become his full time carer later in life. I had mentally prepared myself for this possibility and would have happily done it, but again, this wouldn't be best for Nick.

He needs constant stimulation, a timetable of activities, lots of people around and friends to mix with; something that you just can't provide as an individual within the home.

My parents recently recalled going to collect Nick on his last day of school. He was all set to go off to college and then hopefully to a permanent placement, whilst on the other hand one of his friends was just going home. End of story. And this is so often the case.

It seems that profoundly disabled people have three options. They can either stay at home, or be assessed for a supported living initiative. Be it a care home, living alone with access to day services and social workers, or a more unique arrangement.

Mum and dad had, as ever, done their research and found a middle ground. A type of residential placement, that wasn't a care home, where Nick could live independently with carers at hand. There were only a few such places, but the one they liked best, and that Nick reacted most positively to, was called the Canterbury Oast Trust.

It was founded by the families of disabled people to provide the kind of life they wanted for their children; living and working independently but within a framework of care. It's idyllic.

The Trust consists of a working farm, a shop, a tea room and acres of woodlands, along with a number of lovely residential houses. The residents live and work on and off site and also attend a variety of activities and classes. They go on holidays and day trips too. In short, they have a life.

My dad told me about the moment he realised it was the right place for Nick. We were down there having a look round when a tractor went past. Sitting on the back were a group of residents who worked on the farm - they were heading out to the fields together and were chatting and laughing.

The fact that Nick took to it straight away was a deal breaker too. Nick may not be able to tell you what he's thinking, but his body language is a good indicator, and he looked right at home.

But getting him in - as with everything thus far - was not easy.

COT is the only place of its kind which does an assessment to see if the person is suitable for a place. However in order to carry out the assessment they needed a promise of funding from our Local Authority. But in a situation worthy of Catch 22, our Local Authority could not offer funding until Nick had passed the assessment. The Local Authority were later criticised by the Care Commission for this. And thanks to my dad's efforts funding in principle came into force in our borough.

What's more the process couldn't begin until we had a social worker on board. And no matter how often my parents phoned, emailed and wrote letters asking for a social worker, all of their messages were ignored. In the end my mum, in her inimitable style, quite literally cornered the head of social services during a chance open day at the town hall, and demanded a social worker.

The process from that point was very long winded. In order to choose COT for Nick my parents had to make perfunctory visits to several other placements and put in writing why they were not suitable. They had to do this quickly as there was only one place left and no way of knowing when another would come up again.

Once this was done, the social worker had to put together a full report to send to a funding panel, who only sat once a month.

The social worker worked really hard and got the report in on Christmas Eve just in time for the panel. However they ran out of time at their meeting and carried Nick's case over to the next month's business. Losing a month meant Nick could lose his place.

I didn't know any of this and my parents did a good job of shielding me from the enormous stress they were feeling.

Ultimately Nick got in. As ever my parent's persistence and hard work had paid off. He'll never know how lucky he is and what amazing parents he has. At this point nineteen years of stress caught up with both of them and their health failed. They have now both retired on ill health grounds and are having the quiet life they deserve in a lovely little house by the coast, not too far from Nick.

We did have a scare recently when the Local Authority considered the ‘repatriation' of residents from out of borough care arrangements. They wanted to save money (it always comes back to that) by taking them out of their current care arrangements, bringing them back to their home borough and putting them in supported living; something that Nick was completely unsuitable for. He can't prepare food, bathe himself or dress himself. There was no way he could live alone with a social worker popping by a couple of times a week!

As usual nobody told my parents about this - they found out from an article in a Mencap newsletter. My dad called up to check, assuming that because he hadn't heard anything, and because Nick was too profoundly disabled to live alone, that Nick was not subject to this. My dad was told that, conversely, Nick was first on the list.

We had a few stressful months and further assessments were done. But ultimately the right decision was made and Nick was left alone. Hopefully his place won't be threatened again, but his future will always be an underlying worry for us all.

2 comments:

Spursdad said...

Hi Christina,
A wonderful piece that moved me to tears as I know what you're going through. My younger Sister Sylvia has Down's syndrome and my parents have faced the same battle as yours however, sadly my mum has tried and it's ruined her. My Mum who was a very energetic, happy emigrant from the old empire (Malaysia) has sadly been worn down after years of fighting with authority. My parents are now both almost in their 80s and I'm not sure what will happen with Sylvia.

I'm really proud of her, and she has a great life and even a job that she loves.

Take care and thanks for the laughs on your blog.

Adrian

Christina Martin said...

Adrian, thank you so much for your comment. It made me smile and then made me so sad. Your poor mum, it's so unfair. And you must be carrying a weight around too, wondering what happens with your sister later in life. It's a horrible feeling. Right in your guts. I really hope more support options are funded in the future, now that the social care crisis has been exposed for what it is. People need certainty and stability in their lives (and futures). I wish you the best of luck. Take care of you too x