Shaking Hands

I’m 59 years old, my daughter has been in one of our homes fantastically well supported for the last 5 years and yet I found myself getting up on the stage to talk to 120 parents going through the transition process and my hands were shaking.

They weren’t shaking because I was nervous about talking to these parents – I was shaking because I was reliving the experience I’d gone through myself 7 years ago and I was being reminded of all of the emotions, reliving those emotions I went through and being reminded of the disconnect, the total disconnect between what everyone says is out there and what the reality is.


The trigger for it was listening to a terribly well intentioned address by somebody from MENCAP who was explaining all these wonderful services that were out there and what was available and so on, and watching the parents as they listened to all of this and realising that this wonderful cosy world of care is probably only a reality maybe for 5% of the people – those ‘lucky’ people who can just sail through and it all falls into place for them, they get the right placements, they get the right levels of support.  And that’s really what made me angry was it’s so easy to talk about care and support on a good day, when it all works – and that is just not the reality for most of the people in that room.


I was reliving the bad days that we went through when the Local Authority blocked Laura’s placement and then when they agreed to Laura’s placement, advocates got involved and Laura turned against us.  I was shaking out of anger at the over-simplication of what was available out there for parents.


As I took to the stage I said,

“you know, 10 years ago I was sitting down there with you looking at somebody on the stage talking about what was going to be available, that there wasn’t much available and that we should go out and look at our limited options.” 


I hoped I had a more positive message than that but as I stood from the stage I looked back down to the crowd and my eyes focussed on a lady in the fourth row back.  As I started saying, you need to talk about your kids on a bad day etc. I saw her nodding.  Then I talked about the level of guilt parents feel because somehow you feel you’ve failed because you’re handing over to somebody else to support you child.  This is a totally misplaced sense of guilt that I know Ann feels on a daily basis.  I just saw this poor woman’s eyes well-up and tears come down her cheeks and my heart went out to her and all the other people in the audience going through all of this.


I felt total sympathy but at the same time a total anger at a system which really makes it so very very difficult to get placements for very complex people.




4 Responses to “Shaking Hands”
  1. Gabrielle Farr says:

    Just found your website and read the bit about advocates – we had exactly the same experience. Result our son, Adrian, remains in a service which is totally inappropriate for his autistic needs. You have given us hope to carry on the battle! Will be in touch.

  2. JENNIFER ODD says:

    yes i know my daughter has fought tooth and nail, to get her daughter in the right place, will do for ever i think, not many carers are trained in autisum, keep getting back to your council , have not found social workers much help, good luck, or go to your mp, i have done that, nan

  3. admin says:

    Many thanks for your comment, Gabrielle. Please feel free to get in touch any time as we have helped so many parents whose children are inappropriately placed.
    Best wishes

  4. admin says:

    Unfortuntately most parents we talk to have had to fight for the right placement, particularly those with children with autism as this is still very difficult to get a proper diagnosis. Going to your MP is always a good idea – thank you for sharing your daughter’s experiences with us.
    Best wishes