Tuesday, 2 October 2012

Letting go and falling down

As you know if you read my blog regularly or ever, the last 3 years with Emily have been the worst for her and for us witnessing her pain.

Diagnosed at three with autism and learning disability and then at ten with epilepsy Emmy's progression into adolescence has been a real struggle because of her violence and inability to articulate what she feels.

She's in a tunnel of pain. yearning to detach and being unable to, she's targeted her rage at me and as a family we've been in crisis for more than two years.

I've been managing it and hoping for better and yearning for her pain to calm but it hasn't and last Friday it boiled over to the point where she had to access an emergency bed in respite as a priority. She left the house in her nightie and dressing gown. The system took over so that I'd be safe and she would be protected from the awful remorse she feels, by hurting me. I'm so grateful for all the amazing people Emily has working with her and for her.

The decision has now been made that the move we were looking at for Emily, into residential school at some point, is upon us. As I say at times in the last few days I'm crying so hard that I think I'm going to pass out. More than the broken coccyx last year, or the broken finger two months ago and more even, than the physical pains of labour bringing her into the world.

Last night they told her that she wasn't coming home and gave her the present I'd taken along with a card telling her how much we love her and that we'll see her when we've had a rest.

Emily knows now so I can tell you.

It's the right thing to do. It's the only thing to do, but just because we have been living a version of normal that would break many people, doesn't mean it's the easy thing to do.

We're battling to know what's happening, to make sure Emily knows and to make sure she is ok with knowing. Predictably we're also fighting during this agonising time, to get those with the power over all our lives to do what they need to do quickly. This is not a straightforward thing.

I heard the Norah Jones song featured above when Emily was seven. It was to me a beautiful representation of my beautiful girl so I thought it was fitting to post it here today as I detail the fact that I'm letting her go.

When I posted my Guardian piece about our deciding to send Emily to residential school back in August some kind soul tweeted me with the words "good luck abandoning your kid"

Meet me, look me in the eye and say that.

Or consider, even briefly how you or anyone else has the right to judge people you don't know on a false premise of presuming to know what love is.


  1. Nicky- you and your husband- Emily's parents- are the only two people in the world who really know what is best for her and what you want for her in life.

    Like all real, loving parents, you are the two people in the world who know her better than anyone else.

    Nicky you will never, ever really let her go. No loving parent ever really lets their child go. Even when they move out of home. so please don't think that is what you are doing.

    My thoughts are with you all.

  2. All circumstances are unique. The challenges we faced with my son are different from those you are facing. Seven years ago he went to residential school - for him that meant 38 weeks a year and home at weekends. I can honestly say, it was the most painful decision we have ever made, but also the decision that saved our relationship with him.

    Your situation is different, but I wish you and Emily all the very best for the future. Hopefully, you will be able to look back and find the positives - and hopefully Emily will understand and grow.

    Thoughts are with you.

  3. Nicky - I wish I could DM you.

    At once stage during my AJ's adolescence, there was a possibility she could have been in the same position as Emily. I still bear the scars where I was scratched almost to the bone. With a lot of patience and perseverance from a whole team of people, she's come through school and has been placed somewhere she is happy and cared well for. We've been lucky that transition has been a success. It's been bloody hard work and stressful.

    Residential school or college was an option. I visited one near our home which was fantastic. She would have had everything to hand and full attention. Some people criticised me for thinking down that route. Yet, I have a couple of real life parent/carer friends who have had to go down that route and their respective sons are coming on a treat now. No looking back at all.

    Emily will be fine and she has the luxury of you being around to oversee any issues. There is no question of you not being around for her; in fact I bet your relationship improves drastically. I've seen that happen too.

    AJ's support workers joke with me that she is as good as gold when she is with them and as soon as I reappear, she can become suddenly demanding. It's a mother/daughter thing. She will be fine and you will probably be bothered than she is.

    Love to you all.

    Jayne N

  4. This is really beautiful. Well done.

    Stephen Unwin

  5. It takes the most love and the most courage to make a decision that will hurt you so deeply. No words can make you feel better. It's a decision that we have faced and it haunts me. You truly are amazing to put what is best for your daughter first.
    So much love to you all

  6. You are doing what any loving devoted mother would do. You are an incredible woman who through your determination and love for your daughter, has given me strength to deal with my son. Don't lose faith, your decisions and actions are driven by love.
    Stay strong
    Eliza xxxxx

  7. Only just catching up on all this. Sending much love - you are doing what you have to do xxx

  8. We have 2 autistic boys one high functioning with moderate learning difficulties the other has severe learning/communication difficulties,challenging/aggressive behaviour.we too are considering residential for our child with severe difficulties and its the hardest thing ever :-(

  9. Remember when I said I was homeschooling my son? Well, he's made the decision to go residential instead. It was gutwrenching and I spent quite a bit of time in tears as well. I had to do a lot to try and make the transition, and it was hard. But he goes to school during the week, comes home on weekends, and so far, so good. He starts to build up in aggression again around Sunday morning but I hope this is just due to boredom - he gets to do so much at school, I imagine coming home is just dull! But we'll see how it rolls.

    It is not easy, no. And the guilt of being "free" is hard as hell too. For the first time I have days and nights to myself...an entire four day stretch. What do I do with it? I don't know, so I'm having to relearn it. It's happening, slowly but surely. I'm learning how to drive again. I bought some new clothes. I'm working on making friends again. It's all new territory, shocking and scary and exhilarating all at once.

    Your child will get the help she needs, and you know how to fight to make sure that happens. If you need anyone in your corner I can strongly and heartily recommend Maxwell Gillott solicitors, who have been brilliant. Don't fight alone - and take time to heal and find out what this "normal" other people talk about actually is.

    Good luck, and strength.

  10. It's heartbreaking that you have got to the point of having to make this decision but after reading your blogs and comments its obviously the right decision at this time for Emily and you and your family, you've shown incredible courage in taking this action. I am fortunatel that my son who has Downs Syndrome has responded to medication to reduce his aggression but I know how desperate life can become. My thoughts are with you all and I hope that Emily continues to make progress and someday in the future she can return to you. It should go without saying that people with learning disabilities need more help and support, their families too but it's a sad endightment on this country that a family such as yours has to be parted to find peace and strength for all concerned. Stay strong x

  11. I wanted to draw your attention to an episode of This American Life (radio show) that covered the story of a family who were wrestling with the concept of residential care and what that might mean in terms of loving their severely autistic son. It's completely beautiful and could be an interesting listen for you. It's Act 2 in the following link: http://www.thisamericanlife.org/radio-archives/episode/317/unconditional-love

    Best of luck in everything that you're going through.