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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…
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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…
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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,…
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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
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Danger to others on holiday
Hi, this is really hard to post, but think it needs discussion. We are currrently on holiday and in our hotel across from us is a family with two mentally disabled young adults. At a guess I would say about 6 foot 4 with toddler like mental age. The past two. Mornings they’ve been sitting in the hall way. Today we saw them…
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Sensory item that actually works.
Space For Rest Sleep, insomnia and night-waking are hot topics in the autism community. Environmental factors can make a big difference in the quality of rest. Blackout curtains Paint the bedroom walls a dark color Use a weighted blanket Buy a mattress that doesn’t bounce and jiggle all night, such as a latex or memory…
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Hi, my name is Bobbybiscuit! - Granddaughter with mental health issues
Hello to you all. I am a carer/supporter for my granddaughter. She lives with us. Our correct issue is that Shannon does not get off to sleep until 2am to 3am and despite varying types of medication situation has not improved. Shannon used to be under Childrens and Adult Services (CAMHS) until age of 18 but continued to 20…
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ADHD and ODD in a 16 yr old male
Are there any other parents who have had to cope with this condition with their children, any pointers, helpful and informative places. My second attempt to CAMS said not enough evidence didn't even see my child. Waited a six months for that. At my wit's end as I have M.E/ fibromyalgia.
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New Grandparent
Hi, My Name is Paul, and am about to become a grandparent for the first thing, so am so excited. My Daughter just had her 20 week scan today and was told their is excess fluid on the brain and the child would be born with moderate to severe disabilities. Needless to say we are all devastated, how can we even register news…
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Lonely
Hi Just signed up to this place and feel a little nervous . But was struggling to find somewhere with people who were going through the same thing. I have a 17 year old daughter who has a mental health condition. Depressive phycosis and anxiety. I'm a single mum and have just recently had to give my full time job up to be…
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Adaptations - any Builders to recommend?
Hi, just wondering if anyone has any good experiences of builders to undertake major adaptations to our house? Anyone in the Brighton area please? Plus - anyone you definitely wouldn't recommend? We've been through a complete disaster a few years ago and so now are being cautious... thank you everyone in advance!
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Nursing Support for UK Visitors
Hello! I’m hoping someone might have some personal experience to help me out. I rang Scope and they suggested posting here for a solution. I have a Japanese friend visiting the UK in September. She’s hoping to stay in London for a few days at the end of her visit. She needs help with a catheter twice a day in the morning…
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A premature baby that’s NG fed
Hi, I’m desperately trying to find other parents of NG fed babies of premature babies and some stories of when the NG was removed. My son is 8 months young and I am feeling frustrated I really want to move forwards and I feel like we are not making any progress. Any advice would be appreciated.
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Helpful Materials for Carers
As I recently found my interest in joining communities like this, I also became interested with online content, podcasts and documentaries. I'm trying to find balance and support now as a carer and mother of a child with LD. Since people shared their pieces of advice to me as well as personal experience, I also want to…
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Government taken to court over SEND support
What's been your experience with getting SEND support for your child? I saw on the news this morning that families are taking the government to the High Court over funding for special education needs and disabilities. They argue that the enormous rise in demand for additional support has not been matched by government…
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How do you cope with stress?
I am a stay at home parent caring for my child with LD. It gets too stressful at times and I'm just curious how the other parents here cope with the situation. It's not like we love our child any less, but sometimes it can get overwhelming. Is it just me? Share me your methods of coping, please :)
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Searching For Special Schools
We’ve finally found a special school for my daughter, but she won’t be able to start until next year. I’ve blogged about our experience searching for one as it took a real long while! Read at: https://allforzariah.com/2019/06/24/special-school-success/
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Support for my son 24 years old has autism
Hello I am Raxa my is 24 years old has autism with learning difficulties, he doesn't have any interest in going out, he has carers who comes home end spend time with him, his not willing to do anything travel tranning, bit of house work, i am in the middle between them two, my son is saying that the support worker asking…
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Tips for carers, by carers
If you’ve just started caring
for a friend or loved one, it can be a sudden and dramatic change, or it can
happen very subtly and almost unnoticed. According to Carers UK, each day 6,000
people start caring and it can be a daunting prospect, but it can also become
overwhelming for those of us who have been doing it for…
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ADHD supoort
My daughter was diagnosed with ADHD in January of this year. When I was researching it I discovered loads of videos and info on the condition but nothing that shows you how it really is....how it feels to live with someone with ADHD or how to actually support them and help them. So I have set up a channel on you tube…
