-
Help with Petrol??
Hi guys Just wondered whether anybody knew of any petrol allowances for carers. My son cannot walk so a car is essential. He has so many appointments all over London, plus we live far from school. Can carers get help with their petrol costs? Thank you! :)
-
20 month old diagnosed with PVL and diplegic CP. Any other experiences out there?
HI ALL I'm new to the group. We have a wonderful daughter who is 20 months old and has recently been diagnosed with PVL and diplegic CP. She was born at 35 weeks and was a tricky labour with failed forceps and emergency ceaserean. Had a short time of ventilation which I'm guessing this is what caused the PVL? That's how I…
-
how can I help my son with scoliosis?
Hi, my name is Rachel and l am mum to 3 disabled boys, 2 with mental health issues and 1 with scoliosis and some mental health issues. I have 7 children in total, 2 girls (31 & 25) and 5 boys (15,21,22,26 and 28). I also have 2 grandchildren, grand daughter aged 1 and a grandson who has just turned 6 months. I myself have…
-
Support for ADHD
Hi there. My five year old has recently been diagnosed with ADHD and ODD and is currently awaiting and ASD assessment (I suspect PDA but I know they don't diagnose in my area). He also suffers from anxiety and has several ticks, vocal and physical. He's on ADHD medication. We're really struggling at the moment with the…
-
6 year old Great Grandson
My Great Grandson has had difficulties possibly since birth. He has just turned 6 and attends an ordinary state school. He is in the process of assessment but this hasn’t been completed as yet. It has been pointed by an educationlal psychologist out that he needs additional support in school but this requires funding that…
-
Need help!!
hiya, so my son who has ADHD finds it hard to regulate his emotions when angry or upset will lash out and destroy my home. Is there any way he can see an OT who can help with ways around this and help him use some sort of tool in this case?
-
Struggling with child who enjoys being poorly
Hi there, Anyone have a child with chronic illness who enjoys being poorly because it means they get you to themselves??? Struggle getting her off treatment as she gets upset if recovering as it means a return to normal life! Anyone?
-
Planning ahead for after I’ve gone
Hi, It is my daughter’s 26th birthday tomorrow. A cause for celebration particularly as she only had a 50% chance of surviving her first few weeks of life. She has digeorge syndrome and her younger brother has high functioning autism. My daughter suffers with anxiety which has recently worsened. She has told me that she is…
-
Visit Letter DWP
Ive managed DLA payments for my adult son for 10 years. He has ADHD and needed a lot of support. He moved out about 5 years ago but I didn’t tell DWP as didn’t think it relevant. He’s had DLA since age 6 years but didn’t want the stress or £ by switching over to PIP so ignored the letters. I’ve now had a letter saying they…
-
Confused and frustrated about genetics rant/vent
My son is 13 months old, had been diagnosed with mild hie at birth, along with both hyper/hypotonia and myelnation delay. He is currently behind on speech development but we see speech therapy for an evaluation at the end of the month. We did have some concerns about cerebral palsy but that is largely a non issue. He also…
-
Disabled parents - equipment tips for toddler and older
Hello Our little boy is almost 3 and so far my husband has carried him on his electric wheelchair using a baby/toddler carrier. This has worked just brilliantly up to now. But we’re not sure what we can do as he gets older and he’s not liking being cuddled up to his Dad quite so much. Does anyone have any tips for how to…
-
How do you manage chronic pain in children?
On the community between Monday 29th July and Friday 9th
August we are discussing chronic pain and fatigue. We are aware that these
conditions not only affect adults, but that children can also experience
chronic pain. Seeing your child in pain cannot be nice at all, yet how often do
these things get discussed? How do you…
-
Pip payments for time spent at home
Hi all. My daughter was awarded pip enhanced for daily living and mobility in December last year. my daughter is a 52 wk boarder in a special school due to her severe autism and learning disabilities and the risks to herself and her siblings at home. Under DLA I was able to claim the care element for her when she came…
-
Respite care and GP cover
Confusion reigns - any experience or advice welcomed. We have been using respite care, via the Council, for many many years, Not once have we been advised to beforehand, de-register with our GP, register with the local GP and then the reverse upon end of that period of respite care. We still haven't seen any advice from…
-
It's World Breasfeeding Week - Breastfeeding in public?
This week is World Breastfeeding week and there always seems to be a debate on whether breastfeeding in public is ok, though legally you can breastfeed in public spaces across the UK (you're protected by the Equalities Act 2010). The NHS say: "The law protects breastfeeding mums. You are legally allowed to
breastfeed your…
-
Are you eligible for Carer’s Allowance?
Today for Carer’s Week, we’re discussing Carer’s Allowance. Carer’s
Allowance is money intended to help you look after someone who needs to be
cared for. It’s the main welfare benefit for carers in the UK, but you might
well be eligible for it, even if you don’t consider yourself to be a carer. You could be eligible for…
-
Carers Week
All week on the community, one of our themes is Carers Week. To raise awareness of the needs of carers and promote Carers UK's campaign for Fairer for Carers, we've put together a range of content that celebrates and supports the carers on our community, so why not: * Tell us something positive about your carer! * Share a…
-
Sleep and Cameras
Hi all My 28 year old daughter, with SLD, non verbal, DS & ASD is now sleeping in the wee small hours, between 3 and 5 am, we then wake her at 9, but her days are not good. We are considering fitting cameras as we interrupt her routines she has to start all over again - making the situation worse. She has taken to sleeping…
-
Carers tickets when attending events
Hi all does anyone else believe it is wrong that people have to buy two tickets to attend an event. Marc my son needs 24 hour care, he has capacity been to college has NVQs really clever socialable young man, as his cerebral palsy is very severe he requires a carer to support him pushing his chair, eating and drinking etc,…
-
recently found out my baby boy has spina bifida
I have recently found out my baby boy has spina bifida just looking for support and advice really looking for new friends
