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'If my disabled son still lived at home........... - Carers UK Forum

'If my disabled son still lived at home...........

All about money
'If my disabled son still lived at home, I wouldn’t be here now’

The deaths in New Malden have focused attention on the plight of the parents of disabled children – something this mother understands all too well
In the summer of 1999, I was sitting on Whitby beach with my husband, Andrew, and our two-year-old toddler, Tom. There was a strong breeze that kept blowing sand into our ice creams, but the sky was bright blue, and the sun danced on the surface of the sea.

I didn’t know that the next day would bring a tsunami with it, one that would destroy the life I knew and leave me to rebuild a completely different one. I was only 24 weeks pregnant and my waters broke. Three days later, James was born weighing just 1lb 12oz, with extensive brain damage.
read in full here
http://www.telegraph.co.uk/news/feature ... e-now.html
My goodness, what a heart rending story. It's great that this family managed to obtain support and eventually a residential place for their son, but alarming that their son was 5years old before anyone mentioned that they were entitled to support/help.

I wonder how many other families have been through similar nightmare experiences before finally being offered the help they so badly need?
shewolf wrote:My goodness, what a heart rending story. It's great that this family managed to obtain support and eventually a residential place for their son, but alarming that their son was 5years old before anyone mentioned that they were entitled to support/help.

I wonder how many other families have been through similar nightmare experiences before finally being offered the help they so badly need?
Unfortunately, all too many parents get no information or help, Shewolf. Five years - and longer - are certainly not rare. I've come across families who only found out about the Family Fund, for example, when their child was in their early teens.
SMA is one of the muscular dystrophies. DMD like my son has is the most common form. It was hard enough coping with one child I don't know how those parents coped with three. Well obviously they didn't cope when the mother did this to her babies. So hard to have to try and cope alone when her husband was off in South Africa with their other child. No excuse for what she did though we don't know the full story - did she just snap with the stress? I know I have shouted at my son in the past and said some horrible things and then felt really guilty - muscular dystrophy is just such hard back breaking physical work to cope with especially as your child gets bigger and you get older and weaker. She and her husband will have to live with the knowledge of what she has done for the rest of their lives. So sad for all concerned.

Eun