26 Oct 2012

‘Because I love her I have to let her go’

In a powerful blog, carer and campaigner Nicky Clark writes for Channel 4 News on the pain of coping with her daughter’s “hidden disability”, as part of the A legacy to stand on? series.

'Because I love her I have to let her go' - carer Nicky Clark on her daughter.

Nicky Clark’s daughters Emmy (left), who has autism, learning disabilities and epilepsy, and Lizzy, who has Asperger’s syndrome.

Winterbourne View and the campaign of abuse waged against the learning disabled patients living within its walls is a story indelibly printed on our collective minds.

For me, it was even more disgusting because my younger daughter could easily have been one of those patients.

Emily was diagnosed at three with autism and learning disabilities and later she was diagnosed with epilepsy.

Life for her will always be challenging, but puberty has brought with it additional problems. She began to display challenging behaviours about three years ago. These challenging behaviours are well known to parents like me – who love a child with her conditions, yet when you seek help it is often not forthcoming.

It’s very easy to look in from the outside and tell parents like me that we’re wrong.

The primary emotion experienced by Emmy is fear. Fear of change, fear of unpredictable outcomes, fear of fear itself. In order to manage this, she has become controlling of her environment. This is natural, but it is also very limiting.

When puberty began, the hormones – which screamed out for detachment – clashed with the limits of her learning disability, and tormented by fear and anger, she lashed out at the closest person to her: me.

Anger in teenagers is very common. In fact, it could be argued that we only test our mettle as parents when the demands of puberty arrive. When your child has a learning disability, these demands rise exponentially.

Emily refused school and respite, she slept little and would not leave the house even for crucial doctor’s appointments. Our world, already small from the lack of peer experiences and social networks, became smaller still.

We lived in a constant state of adrenaline on the rare occasions that she would leave the house – the verbal abuse, staring and comments which accompanied us since Emily was diagnosed became an unbearable additional slap in the face.

Nicky Clark has written about the difficult decision to send her daughter to residential school(Paul Clarke).

Emily fears transitions most of all. As she got older, this got worse. She enjoyed school but hated to leave home to attend. She loves respite for the independence it brings and fun she has but again hated to leave home to attend. She became miserable by her own imprisonment and lashed out from this misery and fear of change – breaking my coccyx and my finger when I tied to defend myself.

Her remorse once she calmed down was overwhelming, because she’s a lovely person.

Residential school will give Emily all the things she needs. Most of all, it will give her the ability to learn the life skills which are so crucial for her to master so that she can attain a protected independence as an adult.

Read more in our special report on disability and the Paralympic legacy: A legacy to stand on?

Letting her go at fifteen is agony as her mum – but not letting her go is so much worse because I’d be failing as her advocate. She won’t let me teach her these things because, like all teenagers, she’s telling me to back off.

It’s very easy to look in from the outside and tell parents like me that we’re wrong. That we are abandoning our children, and that Winterbourne View is everywhere. This fails to recognize both our love and commitment to our children and the dedication of those who choose to work with learning disabled people – those who do care and who support those we love to attain an independence of life so vital to us all.

Please don’t presume to tell me or anyone making this heartbreaking decision that I don’t love my children. You have no idea. You’re just standing outside “judging in” then continuing your life in blissful ignorance.

Instead of judging me in the week that marks the fifth anniversary of the deaths of Fiona Pilkington and her daughter Francecca, ask yourself what would you do if you were me – or, more crucially, what you don’t do to prevent our society being one that rejects and isolates learning disabled people and the carers who love them, at every turn.

Because I love her I have to let her go.