Wednesday, 16 March 2011

The Day Today

Today I slept in for longer than I have for a while. It’s very quiet here. On Sunday after two more violent days Emily went in for Emergency respite.

The autism and learning difficulties and epilepsy  have over the last few months been joined with a new factor. Aggression.

Emily has always been a gentle child. Much keener on praise than censure I’ve used many behavioural modification techniques. I call them being a mother but apparently that’s what they are.

Reward charts and praise and lots of love seem the most obvious choice to me.
When you have limited language and the world is, on it’s best day, a strange and confusing place- then punishment for transgression of social rules you don’t understand seems a cruel rule.

I believe in the rights of everyone not just those who fit a mould they had no part in creating. I believe too that as my children’s advocates then my responsibility is clear.

Yet  I’m now at the cliff edge. Because the violence that inhabits our evenings and weekends here ,that has become increasingly difficult over the last few months is now dangerous.

I hadn’t effectively communicated how bad things were here. To be honest I’m not built that way. I’m not saying that this was some misguided attempt at bravery I’m just stating a fact.

When you are the target you tend to believe that you must be the problem. The catalyst for the explosion.

As these behaviours don’t manifest anywhere else then you can understand why this is the conclusion I draw.

Our home is run to the needs of Emily.I try to facilitate calm and peace. This has led to a massive restriction in our activities and behaviours in an attempt to make things right for her.

Autism manifested seemingly from nowhere. It stole my seemingly neurotypical children from me and gave us a world which offers sneering disinterest at best and bullying and blame at worst.

Social services facilitated respite. This began seven years ago and has proved a lifeline. We will not live forever and what will happen to Emily then if she has only ever known this house and her parents as carers.

Hers is a life which will always be lived to the agenda of others.

I am responsible for all of Emily’s personal care needs. I wash and dress her try to interpret her needs, wishes and hopes and manage her daily life. I don’t sleep much and haven’t since she was born. Her epilepsy resurfaced whilst she was in respite and led to a 6 minute respiratory seizure . That must also be managed.

Then the punching, chair throwing door slamming and screaming starts.

I’ve sobbed through three meetings recently the net result of which as Emily is only attacking me has been an offer of behavioural management. I’m afraid we’re beyond reward charts and stickers.

The girls have no friends and to be honest neither do we. We’re none of us here at the  top of anyone’s Party list. Who can blame them eh?

Between my Mum who is dying from Alzheimer’s, Liz’s Asperger’s syndrome and Emmy’s needs- I tend not to have much common ground with a lot of the people I know.

The friends I do have I value beyond measure and if you show empathy and kindness to me or mine I will never forget you.

Tomorrow I’m entering a room where we will discuss Emily’s future. If you’re a fly on the wall you will know who I am.

I'll be the only the only one present without a budget to manage.


  1. ((((((((hugs)))))))) Thinking of you all

    Margo x

  2. Oh Nik. Huge hugs and love to you all. If there's ever anything I can do, just shout. If you, Phil or Lizzy want to come over while Em's in respite let me know, and of course Emily is ALWAYS welcome too if it would be something she'd enjoy. Thinking of you BG Xx

  3. lovely thank you for that offer. Will definitely keep you posted. all love as always Nik xx

  4. You are not the problem. Loving parents are a solution for disabled children to much bigger problems, like a whole life of care from 'the authorities' who hardly care at all.

    As for friends, you have one right here.

  5. Thank you so much. And thank you for making me start a blog. It helps so much to get it down.You are a good friend, even though virtual no less real. Nik xx

  6. Keep in mind that we all care, even if the authorities seem not to. Our difficulties seem moderate by comparison, but I know exactly what you're going through. Will be thinking of you tomorrow Jill xx

  7. So glad you have started a blog.. for me its a lifeline, a way of expressing my thoughts when spoken words don't seem to be enough.

    You are always in my thoughts, but especially for tomorrow..

    Thank you for sharing xx

  8. Hi Nik, my heart goes out to you. There are so many parallels with our story. Our daughter's aggression is mainly turned inwards - she self-injures. Other people have been hurt but usually it's because they've inadvertently got in the way. She has a rare chromosome disorder (1q21.1 micro-deletion syndrome) which causes autism, epilepsy & neuro-psychiatric disorders among other things. She can be an absolute joy but her outbursts have been so extreme that over the years she has had to be restrained & injected with various sedatives (Paraldeyhde's the only one that's worked). She's now 27 & being assessed & treated in a long-stay independent hospital being funded by the NHS. We had a long fight to get her there after two residential placements broke down. She comes home to us most weekends but it's hard managing the unpredictable outbursts now she's full-sized. We have a multi-disciplinary meeting today to discuss her future. There have been good times where we've been able to take her out & about, & hopefully, we can achieve that level of stability again.

  9. Helly thank you. It does help definitely. You are a lovely friend. Nik xx

  10. Jane thank you for that. I'm so sure it's medically based.Wish more was being done there. hopefully this will be addressed tomorrow. heartbreaking decisions have to be informed decisions and we feel that there is mch more to these outbursts. Thank you so much. Nik xx

  11. My heart goes out to you too. I hope all goes well for you at the meeting, I will be thinking of you. You come across as a wonderful loving mum. Never ever blame yourself, although it must be so difficult for you. Sending lots of hugs.

  12. I know the feeling well my daughter is 17 she has Autism ,severe learning difficulties ,challenging behaviour and Epilepsy she has very little means of communication apart from a photo book we use i also have a Son 19 who has Semantic Pragmatic Language Disorder ,Aggression has been a part of our lives since she was 3 years old i have been to A&E several times once after she got her hands on a metal lump hammer and threw it at my head catching my head splitting all my ear open she has smashed my nose and on occasions i have been so in pain with the scratches on top of scratches that i have just lay all night crying in pain i have had blood dripping from my Arms I remember one evening we were sitting there together she was twirling the remote in her hand no warning nothing she just slammed it in to my nose leaving me in a heap on the ground with her still hitting me , Respite cannot cope with her local special school couldn't cope with her yet i am supposed to no training nothing i had to learn my own restraining technique any way i am waffling now you are not alone i know the feeling of total despair when you are attacked by your child the pain through the heart you get there is no other feeling like it as Amy has got older she has calmed a little she is in a specialist school (day pupil till 19) had to fight for it though ! but as to what will happen after that i do not know but i wish you luck and sending you lots of understanding hugs x

  13. Hi Nik, as I mentioned on Twitter the other day I do emphasise with what you're going through. My youngest child, Max, is profoundly autistic (my eldest is on the higher functioning end of the spectrum). At the age of 9 he's still fairly manageable, and (like the younger Emily) generally quite gentle. I do fear for his future - well, my main strategy (if you can call it that) is just to cope with things as they are now. It might not seem the case to yourself, but you do seem very strong in lots of respects in how you're facing up to what's best for Emily and for the rest of the family.

    Like you, I don't often talk about how tough it can be. What particularly upsets me is the way my family (apart from my mum) never offer to help. Mum does have Joe (my eldest) over on a Saturday, because he likes to have a bit of time where everything's not revolving around Max. She couldn't cope with Max, though, and I wouldn't expect her to. On Sundays Joe goes to a drama group which again gives him a bit of time for himself.

    Do you think Emily was affected by her sister's upset about the events in Japan?

    Please keep blogging, Nik, it must help to vent your feelings - and we're here for moral support and hugs.

  14. Hi Nicky, I've been following you since I 'started' on Twitter a couple of months ago but just read this. I have two sons, in their mid twenties, the younger diagnosed with autism and the older with schizophrenia. I also care for my elderly father who I think would have been diagnosed autistic if such things were picked-up on in 'his day'. I am a single parent and an only child so my duties have been onerous over the years. J, my oldest, has threatened me with a knife, told everyone I'm 'on the game' (I'm a lecturer) and terrorised me on-and-off for over a decade to the point where I now have some kind of PTSD. He is on the right medication at last and things have improved but I too have had to make tough decisions, including having him arrested twice when I was literally in fear for my life. I can't tell you how heartbreaking that was. When he was first arrested, despite me explaining to the police who attended that he was ill not 'bad' he ended up in Feltham where it took them a few weeks to place him on a psychiatric ward and then transfer him to the mental health unit near here. Things are ok at the moment but there is always that dread that things will go wrong again and also the worry of what will happen to my boys when I'm not here to do everything for them. I hope you won't let people who judge you upset you as they are coming from a point of ignorance. It's tough seeing the people you love most in the world not having the best time and tough dealing with the effect that has on us. Wishing you the best of luck with your girls. x