Thursday, 25 February 2016

Dear Health Minister: Please, I don't want to lose my son

Our autistic son, David

Update: At the end of the summer 2016 The Guardian  has reported that families were struggling to find decent care after coming out of Winterbourne.  Looks like I've still got plenty to be afraid of .

Dear Sir,

I have this secret fear.  It sits way in the back of my mind and only comes out when I hear things that make me shake.... and then I think, please, I don't want to lose my son.

It smacked me on the face when I was listening to Radio 5 Live on Monday. I was listening to a mother who is desperate to be part of the team that looks after her son with learning disabilities. Despite her borough doing everything it can, there is a shortage of facilities and services so her son is miles away in a care facility.  A facility that she has since discovered has abused him.

As I'm listening I feel my body temperature rise and it's as if my palms have been instantly covered in sweat.  Please, don't let this be the future for my son.

The programme is discussing the call from Sir Stephen Bubb for a commissioner to push through the changes of his  Winterbourne View - Time for Change report following the shocking treatment of the vulnerable people there.  He made 10 recommendations including:

  • The urgent closure of inappropriate patient care institutions 
  • Investment to move people back into their own community
  • The introduction of a legal charter of rights for people with learning disabilies and/or autism and their families.

My son is a very small five year old boy, who laughs, plays and has autism.  He is only on the 2nd percentile for growth and at the moment this makes my life much easier. His lack of understanding and self direction means I often need to carry him up the stairs or into the car because he wants to stay where he is, where he feels safe.  I'm able to do this because he is small.  His size means that when he gets upset I can help move him to a safe place, and if he lashes about he doesn't hurt us.    But my son is going to grow. We have two other children to parent.  I haven't told anyone out right, but I have this fear that I will lose him as he gets bigger because we can't cope on our own.

I fear that as David grows there aren't going to be the services to help us. I fear that my beautiful son who laughs and plays, will be let down by us, by the system ....and that we will lose him. Because I fear he won't have the rights he needs and he will become one of the vulnerable people wrongly placed in hospital rather than being supported in their community. That part of our family will disappear, be miles away because there wasn't enough local support to help us help him, and nowhere near us for him to stay.

Our son is lovingly cared for in our family home.  We feel extremely fortunate that he has a specialist autism education not far from our home and near his siblings school.  We have an Applied Behaviour Analyst working with him, helping us to teach him the vital things he needs to know to live in society.  He is an active, funny child who has difficulty integrating with the world around him.  

Whether it takes a commissioner, 10,000 new nurses or something else, please do it.  Please, put my mind at rest. 

Calm my fear.

That if that day ever comes, if we need more support, if we feel we can't cope, that our son won't be lost.  That he'll be right here.

Thank you. 

Links
Our blog - Without an ASD diagnosis, we would not (22 reasons that 22 months is too long for an ASD diagnosis)
BBC Radio 5 Live Daily - Hear from Julie talk about her son Zak, Dan Scorer from Mencap and others (from 37 mins)
BBC News - Learning disabilities treatment care is 'shocking'

12 comments:

  1. This is so heartbreaking! I don't know what to say... I'm wishing the best of everything for your little one. Lovely post! #coolmumclub

    ReplyDelete
  2. I am so sorry. I don't know how to calm your fear - I don't even know for sure that it's not something I should be fearing too. But I do know, from reading your blog, that you are dedicated to your son and you will do everything that is right when it comes to making sure he stay in your loving home. #brilliantblogposts #coolmumclub

    ReplyDelete
    Replies
    1. I'm not sure anyone can calm my fear. We may have many success and little need for services. But it is this worry I can't get rid of.

      Your kind words are making me well up a bit. Thank you.

      Delete
  3. An important post and one that put me in mind of Michelle Daly's story. I'll link you both on Twitter. H x

    ReplyDelete
  4. Fears for the future here too. You're right to start thinking about it now, though you'll get many telling you it's too far off to worry about..... but the more change we try and affect, the more that is likely to happen. Fingers crossed for huge, good changes x

    ReplyDelete
    Replies
    1. I tend to think not too far ahead with the boys, it's just to hard to see. People sometimes ask where I'd like them to go to secondary school. I know the current options but what I don't know is which will suit them when they get there. That's why this topic sits way at the back. But it's there and it pops right out when its brought to my attention by cuts or stories. Yes, good changes please. Thanks for commenting.

      Delete
  5. What an awful thing to hear and have to worry about! Hopefully as others have said there will be changes in the future that will benefit David. Sometimes the news is all about the negatives. Lots of luck for you and thanks for sharing with #bestandworst xx

    ReplyDelete
  6. It must be so hard for you. Most parents worry about the future for their children, but hearing this on the radio must have sent your worries spiralling. I really hope your fears are unfounded, for your family and all others. David is a lucky boy to have you fighting his corner xx #BestandWorst

    ReplyDelete
  7. I can't stop crying - I can't even begin to think how scared you must feel. I hope that these worries never materialise, and you WILL be able to always care for him as you are now (except for the picking up bit maybe) Wishing you ALL the very very best #PostsFromTheHeart

    ReplyDelete
  8. It's awful the things that have happened. Hopefully things are changing for the better though. May you be joined by many voices all in support of one another. x #PostsFromTheHeart

    ReplyDelete

I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
Follow
@rainbowsaretoo facebook.com/rainbowsaretoobeautiful Ann H on Google + rainbowsaretoo pinterest rainbowsaretoobeautiful bloglovin Instagram rainbowsaretoobeautiful
TOTS100 - UK Parent Blogs
TOTS100