'When will I be normal': Heartbreaking question of Diana's Downs Syndrome goddaughter and her mother's fears of how she will cope alone
23:46 GMT, 10 March 2012
Having been away for a few days, I walked into the house to be met by my 16-year-old daughter, Domenica, usually so happy and bouncy.
‘Why am I a Down’s Syndrome’ was her greeting. ‘Why can’t I do maths’ Followed by the most heartbreaking question of all: ‘When will I be normal’
As a mother, you always worry about how your children will cope when you are not there, but you can reconcile yourself to the idea that they will be fine, and independence will be the making of them.
'I find it very difficult to explain to Domenica why the people she was at school with have moved on, and all seem to be doing things she is unable to do,' said her mother Rosa Monckton
Every September, there appears a flurry of agonised articles by mothers wondering how they will cope with empty-nest syndrome as their children leave home for university.
As a mother of a child with a learning disability, I would give anything to have that problem, and I read these articles through tears of rage.
For every parent of a disabled child, the thought of that child becoming an adult is terrifying and all-pervasive.
I know that in some sense Domenica is never going to grow up, even if the law, once she turns 18, will regard her as an adult like any other.
Domenica, despite her encyclopaedic knowledge of teenage programmes on the Disney channel, cannot tell the time.
She is unable to tie her shoelaces or her dressing-gown cord. She cannot put her hair in a ponytail or go out on her own. And none of this will magically change when she becomes an adult in the eyes of the law.
This turning point is a huge problem for those with a learning disability. There is no allowance for the fact that a disabled child will become a disabled adult, seemingly no understanding that a lifelong learning disability is exactly that – lifelong.
Overnight, vulnerable children are thrown into the lion’s den of adult services, often with disastrous results.
There needs to be a recognition that a learning disability does not change from childhood to adulthood. Perhaps part of the problem is the replacement of the word ‘handicapped’ with ‘learning disability’.
Domenica with her godmother Princess Diana. 'There is no allowance for the fact that a disabled child will become a disabled adult,' said Rosa
The impression created is that we are dealing with people who are just a little bit slow.
In general, when people talk about disability, they mean a physical disability. In those cases, the person with the disability is as self-aware as anyone is, but when you are dealing with a mental disability the issues are much more fraught.
I find it very difficult to explain to Domenica why the people she was at school with have moved on, and all seem to be doing things she is unable to do.
The looming question, that colours every decision I make, is: what will happen to Domenica when we are no longer around to look after her She fears independence because she is self-aware enough to know that it will be very difficult for her.
I wanted to meet other parents on the same journey, and this became the subject of the BBC documentary Letting Go, to be shown this week.
While making the film, I met a mother whose life expectancy was limited, and who had to make the terribly painful decision to move her teenage son out of her home so that he would have time to adapt to living somewhere else before she died.
I am in touch with one mother who is in her late 80s, and her disabled son, who is now in his 50s, has always lived at home. He is not capable of living anywhere else and she is confronted with her own mortality. It is far too late for him to adapt to living elsewhere.
Domenica has always been in mainstream education. A school for pupils with mild learning difficulties would perhaps have been better – madness, a child like Domenica sitting in a chemistry class – but, within our county, they have all been closed.
She has now been lucky enough to get a place at Chickenshed, an inclusive theatre company and performing arts day school in North London. She is doing a BTEC extended diploma in performing arts, a sixth-form course.
She is happy there, but is now convinced that she could have a career on the stage, and be a pop star and a supermodel. She sees no reason at all why this should not be possible.
I realise many children of The X Factor generation have these delusions, but it is particularly pronounced in a child like Domenica.
I don’t in any way want to limit her horizons, but I feel that I must manage her expectations. I have to make sure Domenica has certain skills that will perhaps, in the future, enable her to get out to work, and be part of a community.
'The looming question, that colours every decision I make, is: what will happen to Domenica when we are no longer around to look after her' says Rosa
She has already done a week-long waitressing course at Chalk Farm Hotel near Eastbourne, which employs and trains only people with learning disabilities, and I will encourage her to do more in that vein.
It is very important for all people with learning disabilities that they become as independent as possible, and don’t stagnate in some form of institutional care, staring slack-jawed at a television screen all day long.
It is vital to have the sense of self-esteem that comes with doing some honest work, if they are at all capable of it.
Where these young adults live is an overwhelming problem for parents. The disability lobby in this country has been driven by those with physical difficulties, while those with a learning disability have been dragged along in their wake.
While it is absolutely right that people with physical disabilities should be living independent lives, it is not necessarily appropriate or even possible for those who are more vulnerable and trusting.
There is an ideology that says that everyone is the same, and has the same right to live independently.
This is putting people with learning disabilities into inappropriate accommodation, often with only two hours of care a day, and in flats on their own.
The sense of isolation that they feel, but cannot express, is heartbreaking to witness. What sort of society thinks this could be a suitable way to live What sort of society allows the social worker, without the parent present, to interview the ‘client’, and after half an hour decide a flat in the community is an appropriate setting
Some inspirational parents I know, unable to find somewhere suitable for their daughter, rented a house in Hove, where she now lives with four friends.
There is always someone there at night, and the number of carers in the day depends on what they are doing.
The atmosphere in the house is that of any group of young people living together. There has been such a demand for places that they have now opened two other houses. They have constant battles with the local authority, which would prefer for these young people to be living in single-occupancy flats.
'I know that in some sense Domenica is never going to grow up, even if the law, once she turns 18, will regard her as an adult like any other,' said Rosa (pictured: Domenica on holiday in Gambia)
One mother told me that her daughter, who has Down’s Syndrome, was moved into a flat on her own.
After six months, she had put on five stone. Her mother spoke to the social worker, who replied that ‘It was your daughter’s choice’ to eat all day long, and cited the Human Rights Act. This young woman is not capable of making such a choice, and needs support and guidance, not another packet of crisps.
Another mother wrote to tell me that an Adult Services Reviewing Officer had written to her daughter, asking her to think about her ‘goals for the year’, and what she was ‘hoping to achieve’. Her daughter cannot walk, talk or feed herself, and has no mental capacity.
We have a system in place in our country that is supposed to support the most vulnerable, but it is failing. It has become so complex and unintelligible that it is not helping those who need it most.
I accept a system that hopes to deal with disability from cradle to grave cannot have clear-cut simplicity, but over the years there appears to have been little joined-up thinking, and I suspect even the professionals have lost their ability to make good decisions.
One vast improvement would be to have a single assessment of the needs of families, rather than the endless to-ings and fro-ings between various departments that currently makes the system both intimidating to the user and far too time-consuming.
In opposition, David Cameron, who himself was the father of a severely disabled child, told me that this would be his preference, but nothing has changed.
I have had dealings with Government: I have sat on various committees, had meetings with Ministers, and even one with the Prime Minister, but there seems to be a bureaucratic inertia that is holding the Government back from making the necessary changes.
In 2010, George Osborne announced an extra 2 billion a year for social care by 2014 in his Comprehensive Spending Review, but this money – supplied by the taxpayer and granted to local authorities – is not ring-fenced.
Local authorities are not legally obliged to spend the money on what it was intended for, resulting in a postcode lottery for parents.
The Government defends this on the grounds of ‘localism’, and says it is up to the local authority to decide whether to use it for the purpose it was given.
As a result, I know of several parents who have had to move away from their families and friends in order to secure better provision.
All I want for Domenica is for people to accept her as I do, to recognise the contribution she can make, and to keep her safe.
All my maternal instincts scream at me to keep her with me at home for ever. But then what happens when we die
And here is how I answered her questions. ‘Why am I a Down’s Syndrome’; ‘You’re not, you are Domenica.’
‘Why can’t I do maths’; ‘I can’t either.’
‘When will I be normal’; ‘No one is normal, we are all different.’
But some are more different, and more vulnerable than others.
Letting Go is on BBC1 on Tuesday at 10.35pm.