Thursday, 8 November 2012

The silence.

So today's the day.

It's been one of the worst weeks of my life as a mother and carer. Phil has been here thankfully and  battling flu, which he was also doing last December when my mum died. Weird the coincidences in life.

On Tuesday the day before the US election,  we packed up Emily's things in preparation for her move to her new residential school.

If you've ever had to let someone go you'll understand what we were experiencing, if you have ever had to let your learning disabled child go, you'll know.

The news is full of stories of abuse. It needs to be because there are historical and contemporary atrocities committed in secret and silence that demand exposure. There are vulnerable, voiceless people ignored and treated as toys of torture.

There are many more stories, equally secret, of carers and care staff who are dedicated, compassionate and full of integrity. 

I always highlight them, and promote them along with those of fierce disabled advocates and activists trying to make the world a better place. We live in an age of bullying and of gossip, of bitching and discrediting, we don't need anymore of that. It leads to online paranoia and impotent rage fuelled attacks  on the wrong "enemy".

I'm fortunate to have had the chance of caring for my girls and my mum. Those who no nothing of disability or chronic illness are rare. Those who understand are valuable beyond measure to me. Mum died last December from Alzheimer's and I've never needed her or missed her more than this week. The people who have made that easier are precious to me beyond words.

Friendship is a difficult balance anyway. But being a carer is a uniquely isolating role. Online connections are crucial because, as with this week I've been able to dip in and out. I've been able to distract myself then go back to the task in hand.

Tuesday was particularly hard, as we packed up then transported Emmy's things. But the room was beautiful and cosy and had been painted and shelves built for all her many, many DVD's. It was a very tough day.

Afterwards I was able to find clips and links online, which made me smile and temporaril took me out of the depths of the sadness which sits beside me everyday at the moment. In the last 6 weeks since Emmy accessed emergency respite the "norms" of life like eating and sleeping have been in a fluid state.

Aside from 'repetitive strain injury of the tearducts', I'm trying to keep everything together for Phil and Lizzy and to ensure that the most important transition of Emmy's life goes well.  

Here in this blog is a place for me to put down what I'm feeling with the recognition that much of it as always, remains untold.

It's a difficult balancing act trying to let other carers know they are not alone, which is often the case, and protecting the privacy of everyone involved.

All I know is that being heartbroken doesn't always transfer articulately. Like any grief it forms a scar which is permanent and which seems to the outside to have healed. I always thing of carers as icebergs. Only one tenth of what we feel is visible. The rest is hidden because it has to be.

Carers aren't valued, sadly. They are needed by the government and society and they are warily pitied at best, but they're not valued. When you live this you understand. 

Working 24 hours a day for love is just expected.

Emmy begins her new chapter of life today. A protected independence which she needs and which will bring her the life skills for her future. We fought so hard to get her in and we are so lucky that this wonderful school is on our doorstep. Not every disabled person can achieve independence. Not every disabled person can access mainstream education. 

Both of my girls were included for a while and in both cases the placements broke down because of bullying and ignorance. That doesn't mean that inclusion is wrong far from it, it's beautiful when it works. 

It just means that there needs to be a much better understanding that, as all children are individuals, education needs to be tailored to the needs of every child with a disability not a determined consensus, which demands one experience dominates debate; and which sadly at times can be as ignorant of learning disability as anyone else.

We must try harder to make sure every voice is heard or we become, as a movement, that which we most despise and fight against.

Many carer parents spend 24 hours a day 7 days a week interpreting and facilitating and advocating for those they love. That's what we're supposed to do, we are therefore experts, on our own experience. I never presume to know or speak for anyone else on this matter, only to support and recognise the validity of all voices. 

My experience as a carer was made easier from the battles fought and won by other carers. The experiences of my children, in a world unequipped to fully included disability, underpins my passion and determination to make things better. The fight for Equality is a relay, and we take and pass on the baton as we go. 

Coshing others with that baton is counterproductive, but common.  There are no invalid opinions, there are only participants in a struggle like this. Every voice adds to the chorus and must continue to be heard or oppression has found it's champion, from within.

Caring for 18 years has been both heartbreaking and joyful. It fired in me a passion for equality that refuses to be extinguished by ignorance, intolerance and bigotry. It's gained me broken bones, a panic disorder, an eating disorder, stress, social isolation, loneliness and exhaustion, verbal abuse and bullying. I gained and lost 5 stone, and my peace of mind. I've battled schools, service providers, councillors, local authority employees, politicians, people in public life. 

I fought to support people I love to distraction as they live through, mental breakdown, autism, alzheimers, stroke, ADD, epilepsy, a heart condition, terminal cancer, terminal heart condition, depression, self harm and all encompassing anxiety. 

Emmy takes another step down the road to independence today and I have to let her go to or I'd be failing as her advocate.When you love someone, it goes with the territory.

More than a job or a vocation, more than being a casual bystander, or helper, more than being a mother, or a wife or a daughter or a sister of a friend, it's been my privilege.


  1. I understand completely as did the same thing five years ago! My son is now in semi independent living in his own flat and has really grown up and doesn't need me so much which I miss but I guess that's what I wanted for him . Good luck to her and I hope she gets the benefits although it is not always easy :)

  2. I know exactly how you feel.
    Hopefully it will work out as well for you guys as it did for my family.
    My brother has improved a thousand fold through living away and spending time with his peers. He expresses himself better, has matured and can do more.
    It's still hard. Not seeing him as often as we'd like, wanting to be close by, but it was the best thing for all of us. It gave him a life of his own and gave my parents peace of mind about his future when they are gone.
    Love to you and your family.

  3. What an amazing and insightful post. It has hit home (not for the first time) the prospect of the fear I will undoubtedly feel when Isobel moves away from home for the first time. It is scary.