-
Carers
My name is Dave I am a carer for my wife she has M/S for the last 20 years.we are waiting pip results.life is hard enough without this regime of persecution against disabled people.i lost my carers allowance at 65 It appears at 65 you are no longer a carer.but if you notice politicians seem invulnerable to getting any type…
-
Only member of household not ASD
Hi All I’m new here but From reading the last few discussions I think I may have come to the right place! I am the step father to two boys; the eldest (14) was diagnosed with high functioning autism, adhd, Tourette’s and generalised anxiety disorder when very young and copes relatively well at school. My wife (37) has just…
-
Postural tacicardio syndrome (POTS) and PIP
my 17yr old daughter has been diagnosed with this, and has her assessment for PIP NEXT WEEK. Have any members any experience of this
-
change in childs health
we currently get middle rate PIP for our 7 year old adopted daughter. She has just been assessed by the musculoskeletal team, due to my suspicions there wasn't something quite right with her legs. She's constantly falling over and coming over on her ankle. Her knee is turned inwards. Anyway they have said that she has one…
-
Support for my son after he turns 18
joined this group to try and support my son who is 18 in October , when he reaches 18 I’m realising that all his days out and activity days suddenly disappear, I’m not sure what is out there for him, He has severe learning difficulties. I’m trying to carve out a direction for him to help him. I’m stumbling in the dark at…
-
Travelling by car
Is anyone aware of any gadget that would protect the inside door lock handle as my daughter loves to play with it. First time around after persistent playing it was very costly to fix
-
Fatal valproate syndrome 31 learning disabilities Caring for my cousin please help
Hi guys long story short I’m caring for my cousin She 31 born with congenital heart disease she has long jaw spine problems deformed hands and feet .. Along with Learning difficulties and behaviour problems. Really been let down by social services.. Parents think she has valproate syndrome as both epileptic and took…
-
Feel let down when trying to get support
Hi i have two children with severe physical disabilities who are 5 and 7 . i feel when asking for help and and support the amount of stress i go through is not worth it, whether its applying for a extension for adaptations ( finding this trumatic) trying to get support or a new wheelchair (getting bounced from one…
-
Epilepsy help and advice
Please can you point me in the right direction to get some help for my friend/neighbor that lives in Epsom Surrey. Her 11 yr old daughter began having seizures 2 yrs ago which are uncontrollable with medication. She has them almost daily and is admitted to hospital at least once a month. Her brain is shrinking causing…
-
Moved house, trying to find out who my son's EHCP care worker is
iv been trying to find out who the case worker for my son's EHCP is for weeks and nobody gets back to me since we moved house we're under a different bourogh and a different worker in being told I can change his school without talking to the case worker but I don't even know who that is I don't know what else i can do
-
Kinship carer for 2 nieces
Hello. I am a kinship carer for my 2 nieces. (Age 6 and 7) youngest diagnosed autism, eldest diagnosed ADHD. 5 and half years of no support, help or assistance from anyone. They're beautiful children but hard work. And especially as a single person I find no time to enjoy the things I used to. I found out about this…
-
Parent at lose for where to turn
My son is currently having a assessment for adaptions to our home through disability grant the plans are not taking his full potential into account at moment he is only 3 and we've been told he will walk with support the adapions do not take this into place I'm fighting against the plans is there any organisation for…
-
Wish I could have some answers. Struggling
where to start... My gorgeous boy is 12 months old at the end of this month. Things have never been straight forward when he was born he was admitted to neonatal as wouldn’t feed and his blood sugars had dropped very low. I noticed his hands were doing a weird jerky shaky thing. Subsequently he was jaundice and had…
-
Daughter hasn't been diagnosed, but I know something is amiss
i have signed up in the hope someone can relate to what im saying. my daughter (6) has not been diagnosed with anything but i know somethings a miss, she has major anxiety with everything and anything( food, people, places, school) she has coeliac symptoms yet blood tests come back negative, i mentioned ibs as she still…
-
Tips and tricks on bringing up a baby whilst being disabled
I recently started a blog I would love to share with you. https://www.facebook.com/thewheelsonmum/ My aim is to make the content I wanted when I fell pregnant, tips and tricks on bringing up a baby whilst being disabled. If that's something you'd be interested in please do check it out. If not please don't worry! I also…
-
Power of attorney
Hi, My daughter is about to turn 18 and it has been recommended that I be given power of attorney to manage her money/ benefits and affairs etc. I understand the concept, but don't have a clue about the details. Would anyone be able to give me some links to begin exploring please? Should I take legal advice? I'm completely…
-
Should I give up work and become a full-time carer for my baby?
I am a wife and mother to a gorgeous 18 month old baby boy he recently had an assessment with the peadiatric specialist team as he can’t hold his head up yet, Crawl sit or stand he now has a list as long as well let’s say a piece of string of appointment with various specialists I’m finding it very difficult to cope with…
-
Emotion support for carers
My son is now 7, he was born with multiple conditions and its been hard, but the good news is most of his conditions are managed and supported and school is collecting evidence for the ECHP so now i'm just looking for a little support in dealing with my side as a carer. It's difficult dealing with the behavioural bits and…
-
Caring for my adult daughter is heartbreaking
I am the sole parent of an adult daughter with JME elipepsy. It started when she was 16 ish but she managed to complete school and University and running a business. In the last 18 months or so she has seriously deteriorated and can no longer work. We have done the consultant thing and he is great but there is nothing more…
-
Three chest infections in three months
has anyone had three chest infection in three months . Have been told they will not resuscitate you if heart stops
