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

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'