Nappies!
May 17, 2012 in General Support
Anyone else having this issue?
We have been told Jacob can only have 4 nappies a day – he needs 8!
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by David
by David
Families with disabled children wrongly told they face benefit cut
May 8, 2012 in Benefits, General Support
Thousands of letters warning of £500-a-week benefit cap are sent to thousands of households, including families with disabled children that will not be affected
Charities say that 2,000 families with disabled children have been wrongly targeted. Enver Solomon, policy director at The Children’s Society, said: “What should have been a smooth transition is in danger of becoming a fiasco because of rushed implementation of an ill-thought-out policy. Thousands of families could be left confused, totally in the dark or alarmed because of misinformation.”
He added: “They will be given no information about how much they stand to lose. It also appears that thousands of families will be told incorrectly they may be affected, including those with disabled children who are exempt.”
by David
Cerebra – Call for Parent Stories
March 18, 2012 in General Support
Cerebra (a charity set up to help improve the lives of children with brain related conditions through research, education and directly supporting the children and their carers) would like to hear your stories about caring for your disabled child. ‘Real life’ stories from parents and other family members of children with a disability are a source of great strength and support for families and are a valuable way to educate professionals and the general public.
Do you want to share your thoughts with others? Would you like to help us tell your story? Cerebra would particularly love to hear from you:
· If your child has made contact with the police
· The behaviours your child may exhibit that can be misunderstood by people
· The positives and negatives of the internet (including cyber bullying and keeping safe)
· The problems your child may have with sleep (problems but also hints and tips for other parents)
Cerebra are happy to keep child and family identities confidential by changing names should you wish.
If you are interested please contact Deborah Llewelyn at deborahl@cerebra.org.uk.
by David
Toilets…
February 13, 2012 in General Support, Travel
One problem that we are starting to face, (now Jacob is 5 this month – and getting bigger!) is finding somewhere suitable to change him – normal toliets just aren’t, shall we say, up to the job! We have found this site (http://www.changing-places.org/) that coulod be a great help.
The Changing Places Consortium has launched its campaign on behalf of those people who cannot use standard accessible toilets.This includes people with profound and multiple learning disabilities and their carers, as well as many other disabled people.
They need Changing Places toilets with enough space and the right equipment, including a height adjustable changing bench and a hoist.
Have a look, I hope it’s of some assistance.
by David
Dave Lee – a sad loss
January 17, 2012 in General Support
The Kent comedian and panto star today lost his battle against cancer.
He leaves a fantastic legacy of support for sick and disabled children. Since 1994 his charity has raised over £2 million. Find out more here http://www.daveleehappyholidays.org.uk/
by David
Merry Christmas!
December 25, 2011 in General Support
Merry Christmas everyone!
Thanks for being part of this amazing community, hope Santa brought you all you asked for!
David
by David
Direct Payments
November 21, 2011 in Benefits, General Support
We had an update meeting about Jacob’s direct payments earlier today.
There are a number of different ways direct payments can be used such as:
>Help with household tasks to free up your time to look after your child
>To access shortbreaks to provide respite for the whole family
>To buy specific equipment for your child
>Employing a personal assistant or agency to provide support with your child’s personal care
>To help your child access leisure facilities or attend a particular activity
These are only a few of the many options available to you under direct payments.
Children and Families Direct Payments website can be found here
Please note: This is a Kent specific site, but gives a useful insight about Direct Payments.
by David
An inspirational story…
November 14, 2011 in General Support
Here is some inspiration for us all – a father in Argentina has built a home-made device which has enabled his seven year old son to walk, defying doctors predictions. Click here to see
by David
Soft play mats – good value!
September 27, 2011 in General Support
After much searching we have found a range of play mats at reasonable prices!
We bought two 5′ x 3′ mats for £35 each including delivery. Jacob loves them.
Click here to select
by David
Mummy Clip
September 20, 2011 in General Support, Travel
Mandy and I have been using one of these for a while now – it’s great for hanging a small rucksack containing Jacob’s pump together with drugs, spare nappies and clothes (usual supplies!) to his pushchair.
The cheapest I’ve seen them on sale for is £4.69 plus 0.99 postage (rrp is £5.99 each).
We have an opportunity to bulk buy (min order is 12 units) and sell for £4.50 each plus postage – please reply to this post if your interested?