The Mental Capacity Act

The Mental Capacity Act

Welcome to my Warrior Mums, a collection of family journeys from parents of children/adults with special needs. Some of our mums are advocates or established campaigners, we also have a midwife, two nurses, four teachers, two solicitors and a GP....
Their stories have been a learning curve for parents and professionals alike.

Over the last two years families of vulnerable people have had to adapt to so many government cuts and heartless new policies, that it’s taken its toll on all of us. This blog has given parents the opportunity to share their experience. Some, like myself, have social workers who will do all that’s within their power (and limited resources) to make our lives easier, and there are families that have benefitted from great professional support and guidance. Other families, sadly, have had no such support. They’ve been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of the disability. Facts about their family life have been distorted and manipulated into many untruths, making parents painfully aware as they drag themselves from one assessment to the next, that their reputation probably precedes them. They feel judged, disrespected and ganged up on, so sharing their story with me in Warrior Mums puts their truth out there for all to read.


10 February 2016

The Mental Capacity Act and the Obliteration of Famiy Life for Adult Children

Social Workers don't make these Laws even though they have to adhere to them, but there is room for negotiation; room to soften the edges and not make our lives so difficult, as my experience has shown.

The security that comes through being loved

 It's been such a long time since I blogged and I've really missed everybody.
Thank you for all the emails enquiringly about my absence, like many of you, I have had health issues as well as dealing with an unexpected amount of bureaucracy, and looking after my lovely daughter, Marie. 

I have to confess this has been the most trying year of my life
As many of you know Marie is an adult child with a severe learning disability, quadriplegia, scoliosis, epilepsy and other issues that require 24 hour care. Her speech is very limited and she has no sense of danger.
Nazareth House age 5
Her early childhood was mostly spent isolated a a room on her own where she spent most of the day on the floor banging her head until she either fell asleep or knocked herself out. She screamed and screeched but the nuns ignored and kept her door closed. To this day unless strategies are in place to help her she will still screech and for many reasons: if she's angry or upset, bored, frustration in the midst of a group unable to verbally express herself in order to gain an adult's attention. This behaviour does not happen at home because of the strategies and quick intervention that are in place but anywhere else Marie can quickly regress and her old habits surface.
The screeching she can switch on and off, but Marie is also on the spectrum and can have the occasional meltdown, usually when she's had lots of fun and been over stimulated. That can be very upsetting to witness, when the tears roll down her face and the roars come from the pit of her stomach, then I just have to remain close by with reassurance until she rides the storm.

 The problem started after my knee replacement operation in May. Up until this time I received 18 hours a week support for Marie, but had great difficulty finding any facility that catered for Marie's complex needs. She's had a few short stays in a charitable residential facility, but because she screeched and screamed when her 1-1 assigned carer put her to bed, afraid of upsetting the other 5 permanent residents, the carer got Marie out of bed and let her sleep on the leather couch all night in the sitting room, where her carer also sat in the company of other permanent night staff. With her bedtime routine being broken, Marie was extra hard work when she arrived home, days and nights turned around and I had very little rest for those first few weeks, detrimental to my arthritic knee which I was due to have replaced.
Unfortunately I had to cancel my first total knee replacement op. the respite facility was fully booked but I had to strongly object to Marie returning there as both myself and staff agreed they had exhausted all attempts to encourage Marie not to screech, and sleeping on a couch was undignified.
There was a last minute offer of respite (arranging 24 hour agency care) at home, which I declined, as Marie presents behaviour that challenges people and I knew with all these strangers coming into our home that I would constantly have to intervene, which would interfere with my own recovery time.
In the end a place was found through Shared Lives Scheme run by PSS Enabled in Liverpool. Marie was booked in for a month in a private house in the carer of 2 sisters providing 24 hour 1-1 care.
With Marie's understanding being so limited she had no concept of my operation or why she would be staying in someone else's house and that was kind of sad.
Everywhere Marie goes she has her black file with her person centred plan, which was particularly handy when I went in for my operation. There was no time for the usual slow introductions to respite, and after two one night a week stays, she went there for a month.
The carers said they found file info very helpful and were able to avoid or quickly intervene when Marie began to screech, and of course as she familiarised herself with her surroundings and got to know the carers, she was less anxious and began to relax. 
As it turned out, a month's respite in terms of my recovery was no time at all, and until my request for a new care package, an increase from our 18 hours a week was dealt with, Marie could not come back home. Unfortunately our Social Worker of 3 years was leaving and we were allocated another. When she came to introduce herself I was still using crutches and going to the hospital for physio - and probably quite depressed about the future when I'd received such little support leading up to my op when I had barely been able to walk. It also gave me a lot of time to reflect on the past, having such little support and constant battles for respite, I didn't feel I could go back to that way of life. I was older and less able, but Marie loved living at home and was quite entitled to do so. I was relieved when she started coming home for one night a week, but sad that she developedhad Alapecia. I was worried about her.
A week after I met new SW she went to assess Marie. It was 9.15 in the morning, Marie was dressed, had just had breakfast and her medication, and with her shoes on, she must have thought she was about to go out. Marie became very agitated and confused, and within minutes she began to scream and screech and go stiff.
Years before when we spent time living in Ireland, I followed the path of many parents and accepted the placement Marie was offered only 20 miles from our home. It was ideal, and when we returned to the UK, Marie seemed so settled, the decision was made for her to remain in the facility- as one of the senior staff said to me - 'We're her family now', so I contented myself with visits and taking Marie on holiday.  
However after some years it became apparent that Marie's needs were not being met. She became painfully thin and staff told me they no longer took her out in the community because of her screaming and screeching and plonking down on the ground (needing wheelchair support!) and refusing to walk. 
I had never prayed so hard and after many sleepless nights, I felt I had no option but to bring Marie home. It was such a big decision that I cried the night before I went to collect her. I was scared. But the next day in Ireland as I watched Marie holding her sister, Anna's hand, climbing one slow step at a time up the steps to the plane to fly back home, I knew I'd made the right decision.
So you see we've been down that road of independence and Marie came home half dead.
Coming back home. Age 42

She was like a lost soul and needed a lot of love and care, she even shared my bed for the first few weeks, then we both slept in single beds in her room until I felt she was ready to sleep alone, enabling me to sleep in my own room. 
It was like teaching a baby all over again by being consistent with lots of love and assurance.  
Two years after she returned home I had an awful experience. I went away for 2 nights and left Marie in the care of an agency worker whose firm claimed to specialise in Learning disability. She'd already spent a night when I was at home with them and many days getting to know Marie. While I was away she was relieved during the day by Marie's PA. 
The Agency Worker assisted Marie into bed at 10pm and Marie objected loudly with her screeching. She (Agency Worker) then rang the On Call and after contacting them a second time saying she felt threatened (from 5ft mild quadriplegic Marie) she was advised to dial 999, which she did, and brought the Police to the house. 
Enjoying home life
There the Police sat with Agency Worker and Marie until a replacement staff arrived, just after midnight. The Police then drove Agency worker home.
Nobody rang to inform me of the incident.

So on this morning of the Social Worker's assessment in respite, when there was no sign of Marie quietening down, the SW, who was meeting Marie for the first time, remarked to the other adults that she found Marie's behaviour very concerning.
So now I'm panicking a bit because I had no idea this assessment was taking place and felt a sense of alarm knowing Marie could be misrepresented if her behaviour (that challenges) is misunderstood. By this time Marie was coming home for one night a week and I felt she should have been assessed at home in her familiar surroundings rather than in a strange place with people who hardly knew her.
I emailed the Social Worker the next day expressing my disappointment that she hadn't informed me of her intention to carry out the assessment. I explained I was used to working closely with Social Workers and kept 'in the loop' so to speak. I also asked her to hold off on an assessment she was arranging and to please wait until Marie was at home during her one day a week.
She replied informing me that she had made me aware of her visit. She wanted the assessment completed because it was her duty to keep Marie safe and as Marie's Social Worker she was acting in her 'Best interest'. I felt slightly alarmed! How can a stranger bring in another stranger to assess Marie, and exclude the family? What information will they base their assessment on? 
This was not a very good start and I had a bad feeling about her.
She also said that on going through Marie's file she could not find my legal status to Marie and would I please have the necessary papers for her to check when she visited me in two weeks time. I was still hobbling around on crutches and on heavy painkillers, and going through papers from decades ago was the last thing I needed to deal with.
It kind of went downhill from there. SW wanted the new care package funded through NHS and arranged for lots of assessments. One week we had an OT, Moving and Handling and a Clinical psychologist, coming to the house. All were very nice, but there were no specific problems to address. It was all part and parcel of who Marie is and the only person who couldn't seem to accept it was the SW who seemed to think Marie might be a danger to herself and others.
The Clinical Psychologist, who spent 2 hours with Marie and I, and had no concerns about Marie's reported 'behaviour' after learning about her past and seeing how relaxed she was in her home environment.
In the meantime weeks are passing us by and still no sign of a new care package. The District Nurse who was contacted to fill out the Mental Health form spoke with me on the phone and told me she did not think Marie would qualify for NHS funding because she was manageable at home and her 'issues' the SW had described, were all part of Marie's severe LD. She said she would ring SW and tell her.
Soon Marie was coming home for 2 or 3 nights a week. I was still using one crutch and poor Marie was suffering from Alopecia. She needed to come home for good but the SW had booked her into respite for a much longer period because her assessments were taking longer than she expected. She wasn't happy with the outcome of some assessments and suggested having some of them redone. 
I had heard all kinds of horror stories of people going to respite and then prevented from returning home, so when Marie came home with insect bites on her arm which had turned into secondary infections,  I decided not to send her back. It was no reflection on the carers, they were very good with Marie but they also felt she was fretting and it was time for her to go home. We would have to manage as best we could.

Settling back home after respite

Finally 8 weeks later I was offered an extra 7 hours support a week - for one month only - to help Marie and I to settle down at home - and 4 months after I first applied.
I was baffled and so worn dowm by everything. Marie, I could cope with, but the bureaucracy had been a nightmare. What a complete waste of my supposedly recovery time and energy it had all been.
I was very upset at the way the assessment had been handled. I felt the S W had worked alone and had not felt the need to consult me about anything. I was a nobody and that attitude was detrimental to Marie's wellbeing because the best possible outcome would be if we worked together.  
I wanted to know what had happened and where we went wrong. I wanted to read through the whole assessment so we could all learn from it.
First I rang Careline for advice on how to access Marie's Social Services file under the Freedom of Information Act, after all it contained informations about me as much as Marie and most of the info they had anyway came from me, so I didn't expect to find any revelations. Careline advised to contact Marie's Social worker with this request, so I did. She replied telling me she had submitted my request to the Records Office. I thanked her. 
So there we are settling back into our companionable life with the help of Marie's 18 hour a week PA and the help of friends when another parent using Adult Services sent me a link  to this Social Worker's Facebook page and boy was I shocked to read comments like 'Does everybody speak to each other like shit these days or is it just the way they speak to me?' I scanned down the page and was disgusted to think that this supposedly pillar of the community who has high-handedly undermined my parental skills as she looked after Marie's 'Best interest' was behaving like this. I mean, was she talking about her clients or colleagues? 
The next thing is she emails me to come and assess marie to see how we managed with the one off extra 28 hours. Grrrr another assessment. 
Still pondering about how to deal with this Social Worker, not sure how to respond to her email, I receive 2 registered letters in the post. I have to admit my heart sank when I signed for them, I knew it wouldn't be good news.
The first letter stated that since I had ignored her emails (since I'd seen the swearing and was unsure what to do) Social Worker told me in no uncertain terms that she would be visiting Marie in a week’s time to assess her after the extra 28 hours respite and to see how Marie was getting on in the community, which seemed quite bizarre. I was also instructed to have Marie and her PA present.
The second letter informed me that .....

"I am aware that you made a request on 8th October 2015, to access records in relation to Marie (Surname).
Under the Mental Capacity Act (2005), I have a duty to appoint an Independent Mental Capacity Advocate (IMCA), for Marie. This person will provide an independent perspective for Marie as I am obliged to undertake a Mental Capacity Assessment and a Best Interest Decision to determine that the Local Authority responds to your requests in Marie’s Best Interests.
I will make a referral for the IMCA today."

I was shocked at the steps that had been taken.
So here am I still recovering from a serious operation, where up until now I have not had much rest and peace, looking after a disabled daughter, being put forward for further months of assessments and just because I had asked to see Marie’s file.  
OK it would be Marie that was being assessed, but I would have to facilitate this long drawn out process that Marie would have no understanding of. 
How could they put me through all this now. I didn't know how much more I could cope with.
Marie's PA was with us at the time and when I handed her the letters she read them and began to cry. Such is the misery that's brought into UK homes every day to parents who are doing their best to survive. 

Michelle Daly's Warrior Mums

Surely a Clinical Psychologist would be more qualified to decide these issues and over a shorter period of time. So why was I beginning to feel Marie was being exploited? Why was I beginning to feel like Marie was some kind of cash machine used to justify the IMCA role in the community; a scapegoat for the overworked, understaffed, Adult Services.
Over the weekend I mulled over this miserable situation and read up about the role of an IMCA which states:
 ‘The role of the IMCA is to represent and support people when critical decisions are going to be made on their behalf about provision of health or social care services. This is vital where someone is unable to make decisions themselves and do not have family or friends who could represent them.’
How insulting! To me this was an abuse of power and totally unnecessary.

Marie may not have been born to me but I have played the role of her mother since I was 16, 45 years ago - and she does have a brother and sister, and lot of friends.

The sad fact is it would make no difference if Marie had been born to me. I still couldn't access her notes because the Government do not recognise parents as being of any value to their adult children after they reach 18 years of age. 
The way I see it is that those with the most severe LD are open to abuse. Why put a person who clearly lacks capacity, someone that lives at home with plenty of love and support, through the rigmarole of months of visits and (more) assessments, including an invasion of their privacy as all of their case file and medical records can be accessed, when that person has no comprehension of the process they are involved in. The outcome has to be clear well before the assessment is completed and rather than protecting Marie they are exploiting her. Of course the other downside is that advocacy firms compete for contracts by the LA so they are hardly going to oppose any SW decision. Why would they bite the hand that feeds them?
Nowadays an interview with a SW can seem like interrogation; a sense of Policing, where every word is carefully measured, so much so that we have become afraid to ask for help or support, just in case it's decided that we are not fit to care for our special needs son or daughter and they hurl the MCA at us; the first step of forced removal from the heart of their family.
The Family that comes from a place of love and care, who only want the best for their son or daughter and who up until recently appeared to be well oiled in the wheels of bureaucracy, but not anymore.
I felt this Social Worker had me backed into a corner and I had no option but to put in a complaint about her and givw the reason I had ignored her email. She was immediately removed from our case. 

In my complaint I explained how shocked I was at receiving the registered letters referring Marie for an IMCA and an MCA, without any discussion. I told them I would have withdrawn my application to access Marie's file had I known they were going to take such drastic steps. I asked for both to be withdrawn.

The MCA and Advocacy application the Social Worker submitted came to no fruition, although I understand the Advocacy office received Marie’s file but did not appoint an advocate. (How strange that anybody and everybody else can read Marie’s file.)
The Team Leader also agreed to give me any information from file pertaining to myself, and the FOI office are dealing with it.
At the same time last December the Team Leader promised me a new Social Worker to assess us for a new Care Package (from last June) and also do a Carers Assessment, some time in January. Today, 10th Febuary and there's been no sight nor sign of a new Social Worker and no word from anybody. 
I have always had a lot of respect for my LA Social Workers and over the years they really did what they could to support Marie (and myself) as best they could, but there seems to be a serious drop in standards and nobody seems to care.

 Social Workers don't make these Laws even though they have to adhere to them, but there is room for negotiation; room to soften the edges and not make our lives so difficult, as my experience has shown.

Thank God I brought Marie home. Thank God she had a family to intervene and pick up the pieces when all else failed and she was on a downward spiral.
Today if the same situation arose in the UK 'The Family' would probably not have much say. If the care home staff took the family intervention as criticism they would only have to ring the client's Social Worker and complain about the 'interference' and family would more than likely be banned from making contact under the MCA Act and 'Best Interest' which has happened all too frequently. 
No doubt I would have been banned by the Court of Protection from sharing our story. I would have been left powerless and angry at the injustice of it all, and my heart would have been in pieces...

And as one issue gets resolved another one raises its ugly head.
Here we go again with the one shoe fits all.
Has anybody else’s severe LD daughter been called for Breast Screening? I think it’s terribly cruel. There is no sense to it considering Marie would not understand what was happening and would be afraid, and God forbid she did have breast cancer she would never cope with surgery or chemo, so why doesn’t common sense tell the GPs to use their discretion? 
If anybody (parents or carers) have had concenrs about this please email me. 

28 December 2014

Warrior Mum - Yvonne Newbold

Cancer, Autism, Special needs.

Merry Christmas to all our friends out there and thank you so much for your year-round support.

I’m honoured to feature Yvonne Newbold as our special Christmas Mum - and when you read her amazing story you will understand why.

25th December

"It's a very lonely place being Toby's mother, and now he is an adult, advocating effectively on his behalf gets harder. Adult Services teams work with a very different set of goalposts. Many share a dogmatic ideological belief that Learning Disabled adults are being “held back” by their parents. Many of these professionals see it as their role to rescue the young adult from the clutches of over-protective parents. Once your child reaches 18 technically they are a “vulnerable adult” and therefore the responsibility of the state rather than the parents."

Toby and Francesca - round and round the garden.

M. Hi Yvonne, welcome to warrior mums.  
Would you like to tell us where you were born and if you had any brothers and sisters?    
I had a lovely childhood. I was born and brought up in the Wimbledon area of South West London, the middle child of three. My brother is three years older than me, my sister is seven years younger.   

3rd birthday party

I loved school. I adored being around other children all day long. 
Of course I didn't like all of it, notably I loathed PE, and I still did everything I could some mornings to unsuccessfully persuade my mum that I was probably far too ill to go in. However looking back, I now realise how extraordinarily lucky I was to have had such a positive time throughout. 

M. You started work at a very young age and what an interesting job it was!
My first job is a bit complicated, because I had three amazing “first” jobs, depending on which way you look at things!
My very first job was when I was thirteen years old. My mum had heard on the grapevine that Wimbledon Theatre employed loads of school-girls to be usherettes during their the Christmas school holidays, when they had a matinee performance every single day apart from Sundays. My mum felt that working would be a great experience, and even though the idea absolutely terrified me at the time, I didn't get a lot of say in the matter. One evening in late October she drove me to the front of the theatre as the audience were milling through the doors, and told me to go and ask for the manager and tell him that I wanted a job.
I was petrified, and I had to figure out a way to talk my way past the people tearing the theatre-goer's tickets when I didn't have one myself, to get into the main part of the theatre and then to work out where on earth the manager might be. The only thing that seemed more terrifying would have been to go back to the car and admit to my mum that I hadn't done it!
I never found the manager, but I did find the Front-of-House Supervisor working behind the bar, and she was utterly lovely to me standing there, looking scared-stiff and completely lost, and before I'd even got the words out, she offered me a Christmas job, starting on Christmas Eve.
The job was supposed to only last for the Christmas holidays, but on my last day, this lovely lady called me into her office and asked if I'd like to work on Saturday afternoons for the next few weeks until the end of the pantomime season. Of course I said yes. I'd had the best fun ever, and it was great to have some real money of my own – I was earning a whole £1.15 every performance! When the end of the pantomime season arrived, I was called in again to see her, and asked if I'd like to work every Saturday, for ever!
Upper sixth form
Wow, yes please! The next 4 years I saw every virtually every show that was either on it's way in, or on its way out of the West End, and for free. I was the only girl in my class that always had more than a pound a week to spend, so I felt wealthy beyond measure. I ate unlimited quantities of ice-cream – any slight damage to the ice-cream tubs meant that they couldn't go on sale so it would have been rude not to eat them, and my autograph book was bursting at the seams because I got to meet so many really famous people.
Another lesson I learnt from all of this was that my mum had been right all along. She knew how much I'd love that job, and she also knew that, even though I was only a 13 year old kid, if I was to get it I had to do it on my own. So those few minutes of terror when she dropped me off in the dark outside the theatre that night had been absolutely worth it, and I think I must have had the coolest Saturday job ever.
My second “first” job was every bit as interesting and unusual. My Dad took a job in Italy when I was 16, and I fell in love with Turin, the town we moved to, and most of the young men who lived there too. I commuted back and forth to begin with, staying on at school to do A Levels, but I ended up moving there and studying via a correspondence college. 

Teaching in Italy and looking like one of the children!

At the ripe old age of only 18, I was offered a job as a full time school teacher in a private primary school, in sole charge of a class full of Italian 6 year olds in the morning, and teaching English to groups of older children in the afternoon. I had no training whatsoever, my Italian by then was pretty good but certainly nowhere near competent enough to teach reading and writing in it to tiny children, and I had no clue about behaviour management. The great thing about being 18 is that you don't really understand what you don't know, and you just throw yourself into things without stopping to let your confidence wobble.
It was fabulous fun, and some of the older students in the afternoons were my age or even a few months older. I hate to say it, but their grasp of English grammar was far better than mine would ever be, but I managed to bluff my way through things and pull off a knowledge I didn't really have.
I'd probably still be there now except that tragedy hit my family. My mother became very ill with a mystery condition, and she returned to England where she had much more trust in the medical profession. Before we were born, mum had been a nurse, and when we were growing up she had worked in our GP Practice on a part-time basis.
Within a few weeks, things were looking very bleak. My sister and I returned immediately, with my father staying on to pack up the house and sort a work transfer out back to London. Less than 6 months later, mum had died. I was 19 and devastated.
In the early stages of her illness, mum, intrepid as ever, saw an advert in the Evening Standard that caught her eye. The BBC were recruiting for young people to join them on their in-house secretarial training course. It was a 3 month intensive secretarial skills course coupled with a introduction to virtually every aspect of broadcasting, and it sounded amazing. They had over a thousand applications for about 20 places, and I was so lucky to get one of them.
I loved the course, I loved the buzz of working at The BBC and being able to pop into Television Centre whenever I wanted to watch TV shows being made, but I don't think I was ever cut out to be a secretary. I lasted less than two years, before escaping and getting work in West End Theatres, my first love. Nothing fancy, very low level stuff, but I was happy. More than happy, I loved everything about it – the unsocial hours, the excitement, the friendships and the social life.
However, it wasn't very well paid, and it's quite a transient existence – people come and go, and move on and do other projects. It was great while it lasted, and probably the very best way to spend one's early 20's, but it was never going to be a life-long career. So I stopped, took stock, and used my secretarial skills to get into Advertising, and then Marketing, Sales and Recruitment.
I was 26 when I met Chris. By then I was doing very well and earning more than I'd ever imagined. It was the 1980's and anything seemed possible. Chris was in his early 30's and had not yet found his career niche. It didn't matter, I was earning enough for two of us, and I thought I was head-over-heels in love. However, I didn't look ahead, and I had no way of knowing how difficult working would be when I had three children, all of whom would be disabled. The writing was probably already on the walls. Yet we steamed ahead and bought a flat, we got married, we bought a house, and through this I'd had my first four miscarriages. Children were looking less and less likely, and I was by now already in my 30's, but I was longing to be a mother. Eventually we had children, we bought another house, and all the time we both knew that the relationship had gone well beyond it's sell-by date. The early years of childhood were so stressful with Toby being so ill, but we plodded along, making each other progressively more unhappy, until we finally split up in 2007. By then the children were 14, 12 and 10. I think we both wish we'd split up about a decade earlier.
Adam, Francesca and Toby

M. Tell us about your children.

Xmas 2014 toast
Francesca – is now 22, and beautiful, searingly intelligent, and one of the nicest, kindest, most caring young people I know. She has also fallen in love with Italy, and she spent several months on and off last year working there and learning the language. She is now back home, studying for an Open University degree, working with a Semi-professional theatre group, and is hoping to launch a business in the next few months. Francesca also has some diagnosed disabilities of a neurological nature.

Toby – arrived 18 months after Francesca, in April 1994, so he is now 20. However, Toby is profoundly disabled and with complex medical conditions. His overall condition is still undiagnosed making him the only person in the world with the pattern of symptoms that he has. Altogether, his list of symptoms will fill a whole page, as will his medication list. He is severely learning disabled, with the intellect of a neuro-typical 2 year old, and he is mostly non-verbal, with only a handful of single words, incoherent to anyone who doesn't know him very well. In many respects, Toby has a lot of limitations, but he more than makes up for many of them in other ways. He has a huge, engaging, gregarious personality with a very well-developed sense of fun. He would win awards for his hugs and blowing-kisses skills and he has the gorgeous good looks of matinee idol with the winning smile to match. 

Adam – is 17, born in August 1997, and he, like Francesca, is frighteningly intelligent, however, because of his long list of neurological disabilities, he found school incredibly difficult, and has been very badly let down by the educational establishment. After a lot of discussion, he took the decision to leave college this summer without completing his sixth form course. Instead, he is working with me on all the post-book publication internet marketing, with a view to gaining enough skills to start working in this field. Adam is the one who has inherited my chatterbox gene, and he also is hilariously funny and a natural performer. Like his sister, he too is very involved in our local theatre company, and his has also started to volunteer alongside Francesca helping with the Adult Learning Disability theatre group.

M. How have you enjoyed motherhood?
When Toby was born everything should have been perfect – a young couple with a little girl and a baby boy 18 months apart in age, what more could anyone wish for? We basked in that dream for a few days, until Toby went blue and stopped breathing several times in his first 3 weeks. It was going to be several months before they found part of the reason why. He had been born with Pseudo-Bulbar Palsy, an inability to control his swallowing mechanism, and his milk was flowing into his lungs as well as his stomach. In effect, my breast milk was drowning him and nearly killed him on several occasions.
By the time they discovered what had been happening his lungs were irreversibly damaged. Over the next six years Toby was admitted to hospital 38 times each time for several weeks or months and during every hospital stay he hovered in that no-man's-land on the brink of life or death. It was made very clear that he was unlikely to survive for long, and during every admission a whole new battery of tests would lead to yet more devastating news about his medical condition. The realisation that he was also profoundly disabled crept up on us over several years – of course a child who had faced so much critical illness was not expected to meet his developmental milestones on time.
Those first six years passed in a blur. I never left his bedside when he was in hospital, staying round the clock, twenty-four hours, sleeping on a camp bed next to his cot. Altogether, he and I spent two-thirds of our life in hospital, and on those precious but rare few days in between emergency hospital admissions his round-the-clock relentless medical care meant that I barely slept, ate or drew breath. One night a week we had a nurse come to look after him at home so I could catch up on sleep, but the rest of the time I was on my own, on full alert, coping with tube feeds, nebulisers, chest physio, oxygen, drugs and never being able to take my eyes off him in case he forgot that whole breathing malarkey again.
Toby's condition still has no name because his pattern of symptoms and disabilities is totally unique to him. Geneticists have discussed his case with teams of specialists on every continent and no other child exists with the same condition. On one hand that makes him very special, but on the other it makes life very difficult indeed. There are no support networks, no experienced Paediatric Consultants who specialise in his condition, we have no idea how his condition may progress or how it is likely to affect him as he gets older.
Toby, poorly in 2013
His medical notes span 7 hospitals. Our local hospital alone has 8 bulging folders of notes and a trolley of their own to transport them from clinic appointment to out-patient's consultations. At one point he had 14 Paediatric Consultants each looking after a different part of his disorder. Not one of these specialists could possibly be expected to read up on his entire medical history, so by default I'm the only one who knows most of it. Over the years Toby and I have become so close that I have a highly developed instinct about how well or otherwise he is at any particular moment. However, conveying that “sixth-sense” attunement to a doctor in A & E when he's deteriorating fast isn't always easy. The very best doctors ask me what I think they ought to do next, but we've had some who disregard everything I say and plough on in the wrong direction with an unshakeable conviction that they know best. They are the really scary doctors, the ones who can't accept that Toby has a one-off condition that they know nothing about.
It's a very lonely place being Toby's mother, and now he is an adult, advocating effectively on his behalf gets harder. Adult Services teams work with a very different set of goalposts. Many share a dogmatic ideological belief that Learning Disabled adults are being “held back” by their parents. Many of these professionals see it as their role to rescue the young adult from the clutches of over-protective parents. Once your child reaches 18 technically they are a “vulnerable adult” and therefore the responsibility of the state rather than the parents. Trying to explain the idiosyncrasies of Toby's very complex medical condition is often met with disbelief and patronising impatience.
Later in Toby's childhood, both Francesca and Adam were diagnosed with long lists of impressively named disabilities too. That was a body-blow to say the very least. They were both very intelligent, and intellectually mainstream school was the only option for both of them, but mainstream schools have a long way to go to be able to cater for children who don't quite fit neatly into the boxes marked “conventional”.
To cut a very long story short, Francesca and Adam both struggled horrifically at school, and were unable to continue in full time education throughout their teenage years. Education is immensely important, but so is a child's sense of self and identity.
Yvonne, Malcolm and Francesca
Francesca came out of school at the start of Year 9, but she still managed 11 GCSE's and now, in her early twenties, is doing a degree through The Open University. 

The first I knew of Adam's problems were one morning when I discovered him after his first of many very determined suicide attempts. He spent three years in a very frightening mental health wilderness, three years where he was unable to engage and he became virtually unreachable. Over the last year or so he has made a remarkable recovery and I'm getting to know all over again the happy, engaging, hilarious, cheerful, caring, sensitive, energetic, fabulous Adam that I remember so well from when he was seven or eight, the Adam I once thought we'd lost forever.
Brotherly love
Over the years Toby's health improved, but his behaviour became increasingly challenging. On top of everything else, a few months before his eighteenth birthday, he was also diagnosed with severe autism.

M. And then you were forced to think about your own health. Would you like to share that with us?
It was in May 2012, a few weeks after Toby turned 18, that we had to cope with some more difficult news. I had breast cancer. Not just any old breast cancer – I'd gone and done it really well. I'd somehow managed to develop cancer in both breasts, two completely different types of cancer, and entirely unrelated. One side was worse than the other – they discovered a tumour measuring 14.4cms when they did a mastectomy, and the cancer had spread to 10 lymph nodes.
The next year wasn't easy, but they threw every possible cancer treatment at me to try and make it go away. In March 2013 I went to see the Consultant Oncologist expecting to be given the all-clear, but instead they told me that the cancer had spread to my spine. It was incurable. I would have to have cancer treatment for the rest of my life, which would be considerably shorter than I had envisaged. The average life expectancy on being given news like this was 26 months.
Tough but I'd rather know the bottom line than not know. It was also a wake-up call. I knew it was time to stop talking about my dreams and actually start to live them. The first one? Writing a book.
I looked back and realised how much I had learnt since Toby was a baby and I had been a very frightened, isolated and overwhelmed young mother. Back then, I had never thought I'd be able to keep Toby alive for very long, never mind ferry three very vulnerable children successfully all the way through childhood. In those early days I had no idea of how hard I would have to fight to get the best for the children, and how to cope with the endless meetings with medical, educational and social care professionals to get the right decisions made on their behalf.

M. Several of our warrior mums have written books that turned out to be very therapeutic and you are no exception. Tell us about yours?

The book is called “The Special Parent's Handbook”, and it was published in June 2014. Parents and professionals are reading it in equal measure, and the positive feedback from both has been beyond what I could ever have imagined. My feet have barely touched the ground since it came out.  I've been invited to speak at conferences and seminars. I'm facilitating workshops in schools and in hospitals for both staff and parents. I've written articles about various aspects of parenting disabled children which have been published in a wide selection of prestigious journals and websites. I've even been invited to work with both NHS England and Great Ormond Street Hospital.

The most rewarding part of writing the book is that it has brought me into direct contact with countless parents of disabled children. It is heart-breaking to hear some of their stories and their struggles and battles with those in authority. It has made me determined to do what I can to help things change, to make things much better for the next generation of families.

Writing the book helped me to see what would really help families like ours. They are mostly simple things that cost next to nothing. Kindness and compassion would be a great start, as would being actively listened to, so that the professionals we deal with always hear our real concerns and understand them properly, rather than being listened to for just long enough to enable them to reply.

I would also love to see a future where parents are able to work in true partnership with the professionals. Parents have a unique and holistic understanding and insight into not only how their child's condition impacts on their lives, but also into the essence of who their child is and what they would like to achieve themselves. The other big change I would like to see is a huge reduction in the bureaucracy, the pointless administration, and the way that too often the professionals have their hands tied up in policy, procedure and protocols at the expense of common-sense and hands-on practical help. Wouldn't it be great if we could just make everything simple?

Ever since I was diagnosed with cancer I wrote a blog, "Coke Floats and Chemo. Initially it was mainly about the cancer itself and how I was coping with it all. Over time though, it became more and more about the children. When the book was published, I started a new blog on the website I created as part of the book promotion, For the past six months or so, life has been too chaotic to keep two blogs going, so Coke Floats and Chemo has taken a back seat for the time being. However the two blogs have a very different feel about them – Coke Floats is more about the daft things that happen in life, whereas the website blog posts tend to be more serious, sharing experiences and information on various aspects of parenting disabled children to support parents.

This year has been incredible, both in great ways and in very difficult ways. The book has been a hugely positive experience and has opened doors to all sorts of new opportunities, things that I never expected to happen, particularly during circumstances where I am supposed to be winding down and facing the final chapter of my life. To be honest, most of the time I'm too busy to even acknowledge the cancer is there, but sometimes I overdo things with such gusto that it occasionally sticks its head up over the parapet for long enough to bring me down low for a few days. My oncology team are very encouraging though – they confirm that I'm doing very well indeed and quite astonishingly, so far the cancer doesn't seem to have progressed any further since it was first discovered that it had started to spread.

Almost exactly a year ago I wrote this blog post, a few days after last Christmas. I think it gives a very honest glimpse into how things really are for my family.
"Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on the table. That wretched dinner! More about that one later.

Years ago, when my kids were tiny, and Toby was oh so ill and fragile, going out was nigh on impossible, so instead I promised myself that what my kids lacked in terms of days out I would make up for with fabulously fun and over-the-top birthdays and Christmases. However, I never bargained on getting cancer.

This Christmas has really given that old cancer of mine a chance to showcase its talents which are total and utter exhaustion, zilch energy, distracted concentration levels, crippling joint pain and a fairly generous helping of depressive lowness too. Absolutely everything took longer, didn't go quite to plan or even deteriorated into total disaster, or so it seemed. I just seemed to spend the previous three weeks working harder for longer hours than I've ever had to before, and just not achieving anything at all worth noticing. The house was a tip, and the harder I tidied the more tippish it seemed. The more planning I did the more catastrophically pear-shaped things went. Quite frankly, I've always been like Mrs Christmas, loving every minute of pulling everything out of the bag and making it all happen, but this year I was Mrs Christmas Misery personified.

Christmas dinner was a nightmare. I could not get my head around timings or cooking methods or gravy, bread sauce and sprouts whatsoever. How have I got everything in the oven and out simultaneously and on time in previous years? I haven't got a clue. All I know is that all I wanted to do by ten o'clock on Christmas morning was to sit on the floor, burst into tears, throw the sodding lot in the bin and get someone else to produce cheese on toast for all and sundry instead.

Somehow it all worked, but I've learned some valuable lessons in the process. At 2.30pm baked salmon fillet with a herb and lemon sauce on brown bread and butter was served, and swiftly followed by Turkey, Ham, Stuffing, Pigs in Blankets, Roast Potatoes, Bread Sauce, Sprouts, Parsnip, Broccoli, Peas and Gravy at 3 O'clock on the dot. All by myself, and the clearing up too.

So what were those lessons? Quite simply, never again. I've had to face up to the fact that I'm just not well enough anymore. The stress and the panic and the worry and the going to bed at 3am for a week or so beforehand just to try and get everything done is crazy. If I'm lucky enough to still be alive next Christmas and I do this all over again, then I would really be pushing my luck for the Christmas after that.

However, next Christmas will not be the same, nor any Christmas beyond that one ever again, and not because of my cancer, though goodness knows that may impact on future Christmases a fair bit too.

The main thing I've had to cope with is the sadness that this year was an end-of-an-era Christmas, with all sorts of things beyond my control about to change for our family.

The first change is heartbreakingly difficult to even write about, and it has taken months of very difficult emotions to cope with to accept this change as an inevitability.  Toby is leaving home. I know that this is age-appropriate, and at 19, a vast swathe of his age-group are away at uni or off doing their own thing, but with Toby it is so different. He still has the mental age of a 2 year old, and the mindset of a toddler. He is very Mummy-clingy, and has no clue of what we are planning for him and why.

The very sad reality is that I am no longer well enough or strong enough to care for him 24/7. I tuned that one out and lived in denial very successfully for a very long time, but then a tragic event brought it to a head. I know of another breast cancer patient whose disease was following a near identical pattern to mine. She, too, was doing comparatively well until her disease started progressing very suddenly, and in the space of 6 weeks she had died. It was a huge shock to her family, and has given me a bit of a wake-up call to ensure Toby is properly cared for if the same thing were to happen to me.

If I was to deteriorate suddenly, what would happen to him? Social Services would have to act very quickly, and may have no choice but to shoehorn him into a situation which may not be suitable or where he may not be happy, and he wouldn't have me fit and well enough to be banging or doors if things are going pear-shaped, or to visit him several times a week to help him settle in.

One day, I will die, hopefully not for a very long time yet, but when that day comes, I want it to be a sadness for Toby, rather than a tragedy. The idea of him losing his mummy and his home in one fell swoop is just too much for me to comprehend. I owe it to him to ensure he is happy and settled elsewhere before I toddle off the edge of this planet.

Making such a major decision has been probably the hardest thing I have ever had to do, The idea of Toby, as vulnerable and dependent on others as he is, being cared for in some sort of residential setting is just the stuff of my nightmares, and has been for several years. When he was very little, he was not expected to survive, which was incredibly hard to accept and live with on a daily basis. At the time, I thought that was the worst thing that could possibly happen to a mother, knowing with virtual certainty that her offspring will die in childhood.

Now I wonder if that really is the saddest possible outcome. At least he would only have known the type of love that a warm, close-knit family can offer. For years I have woken in the night tortured by the image of a Toby in his fifties, living somewhere else, unhappy, unloved and unable to make his needs and wants understood clearly. All learning disabled adults are vulnerable to abuse of all kinds, but when they are also largely non-verbal, these fears for your child's future are magnified beyond all proportion.

My job is to make sure that we springboard him into his new setting as positively as possible, and that I am still well enough to advocate for him for long enough until Francesca and Adam are sufficiently confident to take over. He will always be a huge part of this family wherever he is living, and I am trying to console myself with the fact that, if this goes well, our relationship could develop so that I am "just his mummy" for the first time in our lives. Of course he will still come home often, and we will visit him frequently too. Yet other people will be there to do his physical care and cajoling and giving him his medicines; all that stuff will be out of the way so that he and I can just have fun in the very silly ways we both enjoy together.

In the next few days, I'm hoping to write another post about the whole topic of care, and the decisions I have had to make and why, but right now there's another change to tell you about too.

I'm going to be a grandmother to a little baby boy in April, courtesy of my youngest son, Adam and his lovely girlfriend, Alex. They told both Grandmothers-to-be together in the same week their GCSE results came out, so they are far too young in most people's eyes. It's not easy to become a parent when you haven't even finished your own childhood yet, but I am so proud of both of them in the way they have taken it on board. They are acting responsibly, saving for the baby, working hard and pulling together - they may be young but they are growing up incredibly fast and showing a level of maturity that I've seen lacking in new parents double their age.

There are huge social stigmas attached to teenage pregnancy, and I've done more reading up on the subject than I ever thought possible. Yet how can the birth of a brand new baby ever be anything other than joyful? In many ways this little boy is already blessed. He is being born into two incredibly strong, resilient and loving families who are both pulling together already to support this new little family unit in every way we know how to.

If you have been reading this blog for a few months you may remember that the one thing I was very sad about when I was diagnosed with Stage iv cancer was that I was unlikely to meet my grandchildren. If Adam and Alex had waited a more conventional extra 10 years before starting a family, that may well have been the case, but now I can look forward to being a fully-fledged Grandma with babysitting duties and everything else Grandmas are good at doing.

In our situation, though, I feel very strongly that my role is to support them all through thick and thin, come what may. When they leave the house with the baby they are going to have to learn how to grow a thicker skin to deal with hostile stares, remarks, judgements and ignorant assumptions from strangers who won't understand that young parents need more support, not less.

Teenage parenthood does not have to be a disaster, in fact, I'm hopeful that this baby could actually be the making of both of them. As long as we all support them so they can finish their education so that they have a reasonable earning capacity, they don't have to be a poverty breadline statistic either. If I'm still around I will be highly amused at watching Adam deal with parenting a teenager when he is still in his twenties, but having seen both of them becoming focussed and forward-thinking by the day, I'm sure they'll both deal with whatever challenges parenthood brings them admirably.

Even Francesca is off, out and about, doing her own thing. She has made me brim with pride and quake with fear in equal measures this year, as she has discovered a travel bug and fallen in love with Italy. She spent several weeks in the summer as an Au Pair on a Sicilian beach for an extended Milanese family supervising 5 small children. Then she enrolled on an intensive language course in Rome, absolutely falling for the place. This weekend she did both Rome and Bologna, managing to make it home in time for Christmas but arriving at Heathrow in the height of the worst storm we've had for years. I have a feeling she'll be spending a lot of 2014 in pastures new, and I'm thrilled to see her making the most of her youth.

It was only May 2012 that I was diagnosed with cancer, and my biggest fear then was leaving the three children motherless, well before they are ready. They are still nowhere near ready for me to pop my clogs, but just look at how far all three have come in the space of less than 2 years.

Back to Christmas. Dinner was on the table but it took me an hour or so to get my own Christmas spirit flowing nicely again, possibly helped in the end by a couple of glasses of good red wine. By the evening, things were great, the kids were happy, the whole family was there and we laughed like drains til the small hours of the morning. In the end, it was probably one of the nicest and happiest Christmases ever.

Who knows what next Christmas will look like. The dynamic will definitely have changed, but Toby, our very own family Christmas King, will definitely be at home for the whole of Christmas. Who knows about the others? Francesca, Adam, Alex and Baby will know how welcome they will be, as will everyone else in our extended family, but it's now up to my kids to decide for themselves to do what feels right for them at Christmas. One small change I may make though, next year it could well be cheese on toast for Christmas Dinner."

Since I wrote this, Toby moved into a residential care home in February. I managed to get funding for a place in what we all hoped would be the next best thing to living at home. He moved into the care home directly opposite our house, so that he's been able to remain an integral part of our family with us being able to see him almost every day and Toby being able to pop over to our house for very frequent visits.
However it hasn't been plain sailing, and we've had concerns from the outset which culminated in him breaking his leg in the summer. We are still waiting for the safeguarding report to be completed, but it is likely to confirm that it shouldn't have happened, and that it was caused by negligence. It's a difficult situation, but there were still many positives about the care home and the staff who work there, so with some major reservations I've done all I can to help the situation improve.  A few days ago it became apparent that it's not going to happen, and the placement is on the verge of breaking down. We've had the difficult meeting with his team and everyone agrees now that he must move somewhere else as soon as possible. So we're back to the drawing board with me urgently trying to find somewhere really lovely for Toby where he can settle and be very happy for a very long time.
My grandson was born in April. Unbeknown to us until a few days later, the other half of his family had decided that they didn't want our family to have any involvement with the baby. They told social workers that Adam was “abusive and aggressive” which is completely untrue. The young mother who last year had pleaded with me to let her move into our house because she loved being here so much decided to tell the social workers that I have always made her feel uncomfortable. These accusations worked – social services stepped in immediately and prevented all contact from our side of the family. 
I've met the baby twice, both before he was a week old, and both times for less than 15 minutes, but I haven't been allowed to see him for eight months. The other family wouldn't name Adam on the birth certificate, and he was not allowed any say in the baby's name. It's so sad, so unnecessary, and so difficult, but Adam has handled the whole situation with maturity, patience and commitment. He has walked into umpteen very hostile meetings alone, and he has held his own with calm and measured politeness. Slowly he is impressing the professionals, and he is now allowed to see his son for one hour every week, with both the child's mother and a social worker present.
This wasn't how we wanted it to be. We wanted this child to be at the centre of both sides of his family, basking in the love and security that is every child's birthright. It's early days, the baby is only 8 months old, and we are doing everything we can to support Adam in becoming the best father he can be, and we can only hope that, over time, he will be able to become the hands-on involved and loving daddy that he so wants to be. Things take time, trust has to be rebuilt and bridges crossed, but whatever happens and however long it takes, this half of my grandson's family will always be here for him and for his mother should they ever need us.
Life happens. People behave in ways that can baffled us, both other families and professionals alike, and so often they don't do these things to be unkind but to protect themselves. We all have insecurities, we all get hurt, and we all get frightened. Kindness, listening, working together and keeping things simple should apply to every situation, not just in circumstances concerning childhood disability. 

Who knows what the next 12 months will bring for our family. Hopefully my cancer will continue to know its place as an irksome but insignificant shadow in the corner of my life.  It would be lovely if we can resolve the difficulties with the other half of the baby's family. I want Toby to be living somewhere where he feels safe, secure and very happy, and I'm hopeful that there will be at least one more book written and published. Oh and I'm having Christmas Dinner cooked for me this year – by Malcolm, the wonderful man who came into our lives 5 years ago, loves my children nearly as much as I do, and makes every part of our lives nicer, funnier and easier than I ever thought possible.
Things change and life moves on. My three beautiful children now stand on the brink of adulthood with their whole lives ahead of them, happy times ahead as well as unknown challenges. I don't think a mother ever stops worrying about everything, and when their children are also coping with disabilities and medical conditions it makes looking too far ahead very scary indeed. I worry about everything,  their happiness, their well-being, their security and the choices they make. Sadly, Toby hasn't got the capacity to make all of his choices for himself, nor has he the ability to keep himself safe. I live with the ever-present fear of his future happiness, the fear that some carer in the future may want to hurt him and that he won't have people in his life who love him and value him for who he is. There are no answers, no reassurance, no guarantees. I have put in place as many protective mechanisms as I possibly can for his future, but I know I won't be here forever to look out for him.
The only consolation I have is that, although I have never asked or expected them to, I know that Francesca and Adam will take over when I'm gone. They both adore Toby, and it swells my heart to see how protective they both are, and I just know that they will always be there for him, watching his back and making bad things good again. As a mother, I don't think I could ask for any more. 

M. Yvonne, thank you so much for sharing your story. I know I speak for many when I wish you well in the future with both your health and Toby's placement. 



Coke Floats and Chemo blog

The Special Parents Handbook