Tag Archives: Family

Being a young carer can be stressful, but Scope’s online community helped me

Catherine is 16 years old, and a carer to her brother and sister. In this blog she explains how Scope’s online community helped her with the frustrations and stress that being a young carer can bring.

Your support can make all the difference. Please give a gift today so that a young carer like Catherine doesn’t have to struggle alone.

Not your average 16-year-old

If you met me, you’d probably think I’m like any other teenager. But I’m not.

I’m a cleaner, a cook, a carer, a homework supervisor, a role model and a shoulder to cry on. That’s a lot to take on at 16 years of age. I’m a young carer, so I look after my brother, who has Attention Deficit Hyperactive Disorder (ADHD) and autism, my sister, who has mental health issues, and my mum, who has ADHD. Phew!

I get up at 5:30am, and then it all begins, waking up the family, getting them dressed, making breakfast, giving them medication. Life is a balancing act!

Catherine and her younger sister
Catherine and her younger sister

Sometimes it all gets a bit much, so I’m glad I heard about Scope’s online community. It’s great because you don’t have to join a waiting list, or travel miles to talk to someone.

Scope’s online community is a lifeline to people like me.

It’s there 24 hours a day and there’s a whole community of people who’ve been through the same challenges and understand and can offer support.

I’ll never forget my first visit to Scope’s online community. I loved it straightaway – I saw how open everyone was about their feelings and personal battles, and I realised I wasn’t alone.

I’ve turned to the community many times since then, and it made a huge difference when my brother started hitting out at me. It was very hard to take when I was trying my best for him. But people on the community helped me see that it was his way of expressing his frustration – it wasn’t directed at me personally. And that frustration has gone away as we’ve settled into a new routine as a family.

The support I’ve received on the community has pulled me up when I’ve been down, left me in stitches when before there were tears. It’s helped me see that it’s okay to go through rough patches, and that I don’t have to feel guilty about struggling.

Looking to the future

There are so many people out there who could benefit from this 24 hour a day peer support network which is why I’m writing this blog. I want to make sure other families don’t have to struggle like I did and you could help Scope offer a lifeline to families like mine.

Catherine typing on her phone
Catherine using the online community from her mobile phone

Catherine is now helping others

I’m doing everything I can to help Scope myself. Now I also volunteer as an online community champion, to make sure people feel welcome on the site. I want to say thank you (times a million) to all supporters of Scope. Scope’s online community has been a lifeline to my family and I know it can be to others.

Catherine’s story shows that young people’s lives can be changed for the better with a friendly and accessible community, available anytime anywhere.

Donate today to support our work with young carers like Catherine.  

You could help ensure a disabled person and their carer always has someone to turn to. 

“Autism doesn’t stop me from enjoying life” – National Siblings Day

It’s National Siblings Day on Sunday so we chatted to Joe, who has autism, and his sisters Charlie and Lauren. In this blog they talk about growing up together, their achievements and how their lives have been shaped by autism.

Joe

I live in Much Hadham with my parents and my sister Lauren. My hobbies are computers and reading. I also like hiking and indoor climbing. At the moment I’m working for East Herts District Council as a BSU Officer for Environmental Health. It’s basically filing, scanning, taking messages. I like that I get on with everybody, it boosts my confidence and I like keeping busy. People don’t treat me differently. My colleagues just treat me like anyone else, as a friend.

Autism doesn’t stop me from enjoying life

I found out about my autism diagnosis from my doctor and my mum when we arranged for me to have a personal tutor at college. Until then I just thought that’s how being a teenager was. But it doesn’t stop me from enjoying life at all.

Autism might affect me at first when it comes to social situations but I’ve found that it helps me too. I’ll admit, when I started taking phone calls at work it was daunting but I thought I should overcome that problem just by practicing using the phone. Holding back from situations like this wouldn’t do me any good.

My family

My family have supported me and made me feel positive about my life. Like most families we have our ups and downs but most of the time we get on great. We go on trips to the cinema or somewhere to eat, to the theatre or just shopping. Mind you, when it comes to clothes shopping, I do like my sisters but I find the way they shop a bit boring. But I suppose other guys who have sisters are the same.

Joe’s advice for other people

I’m settled at the moment and grateful for everything that has happened to me so far. Where I’m working is the best employment as far as I know. I love living here and I’m not planning to move anywhere else, not for a long time anyway.

From my experience, my advice is to be positive about autism; don’t think of it as a negative thing. If I feel positive about autism and I’m not letting it affect my life too much, other people can do the same too.

Lauren and Joe young
Joe and his sister Lauren when they were young

Lauren and Charlie

Joe is just Joe

Charlie: Joe can be a very sweet, thoughtful, nice guy. He loves computer games and pop music, and he has quite a silly sense of humour.

Lauren: One of the things I like is that he gets my sense of humour. I’m quite sarcastic and they say you’re never meant to be sarcastic to someone with autism because they will take you literally, but he gets me.

Charlie: He once told someone to ‘eat his shorts’ when she told him off, because we used to all watch The Simpsons together when we were little. That always tickles me.

Lauren: Everybody loves him, from his colleagues to his tutors at college. I remember at his student of the year event, people turning round to us and saying ‘Oh you’re Joe’s family! You’re so lucky; he’s such a lovely boy.’

Charlie: He’s painfully honest though. He’d say things like ‘no offense Charlie but shouldn’t you have moved out by now?’

Lauren: One my favourite stories was when he went for his DLA assessment. He’s never really been a drinker, but we’ll have a glass of champagne at New Year’s. At his DLA interview they asked him ‘What do you drink?’ and he said ‘Coke, but occasionally champagne.’ And obviously DLA is a benefit so we had to back track and be like ‘very very very very rarely!’

The flip side

Lauren: You can get jealous of the amount of attention that is paid to them and when they’re allowed to do certain things. When you’re younger you don’t understand why, it’s just “why is he allowed to do that if I’m not?” but as you get older you realise it’s ‘anything for an easy life’ – they’re just simple things that will make him happy.

Charlie: We sometimes felt protective, like any sister would. If anyone said anything about Joe I wanted to rip their head off. Kids can be horrible but they don’t mean anything by it. They just see someone doing something that’s not ‘the norm’ and they comment on it. Lauren has always been better at dealing with it than I have.

Understanding autism

Lauren: When I found out that he had autism I think I was about 7. I remember mum explaining it to me and being like ‘oh yeah, of course’. It just all made sense. I used to spend a lot of time researching autism. I didn’t really know how to talk about it, I didn’t want to talk about it and there wasn’t like a school guidance counsellor or anything. So I just used to read about it a lot.

At school I found out there was a boy who had an autistic sister and I remember being excited to talk to him. But then he told me that she has really high support needs and I was a bit taken aback, because that’s not something I could relate to.

Charlie: I’m the only person I know who’s got an autistic brother, other than Lauren obviously. Some people act like they know about autism in a very patronising way. They don’t mean to be.

Lauren: It’s that innocent ignorance that Scope talks about in End the Awkward.

Lauren and Joe older
Joe and his sister Lauren last year

Sharing success

Charlie: When Joe was in college he won ‘Student of the Year’ two years running. I was head girl at my sixth form and so was Lauren. I love that we’ve all shared the same sort of accolades. That was really nice.

Lauren: I credit a lot of who I am to Joe. I think I’m a nice person and I have empathy for people. For my dissertation at university I did a political research report for an MP. Joe was looking for jobs and I was getting incredibly frustrated because he had all these skills, he was diligent and hard-working – so why wasn’t he getting a job? That’s what I chose to look into. It’s always shaped what I’ve done, including my job today.

Top tips for inclusive half term holiday fun

Half term doesn’t have to break the bank. Visit your local Scope shop and chose from lots of toys, DVDs and other fun activities to keep the kids entertained.
Find your local Scope shop

Wondering how to entertain the kids this half term? It’s never easy trying to juggle everyone’s needs, so we asked our online community for ideas. Here’s what they came up with:

Get out and about

Euan’s guide

Use the Euan’s guide website & app to check out access in places you want to go or for ideas of things to do in your area.  Better still, upload your own reviews to help others and expand the coverage of the website. Reviews include features such as accessible toilets, carers discount, disabled parking and dedicated seating etc.

Free copy of the Rough Guide to Accessible Britain

Download a free copy of the Rough Guide to Accessible Britain, which has got loads of great ideas for accessible family days out.AccessibleBritain_cover_2014

Free lunchtime concerts

Most big cities have free lunchtime concerts if you look out for them.  If you live in London, you’re spoilt for choice!

Accessible countryside for everyone

If the weather’s nice, head outdoors. Accessible Countryside for Everyone  lists wheelchair walks, buggy walks, easy walks, support organisations, disability sport info, camp site with disabled facilities and more. Visitwoods.org.uk also lists over 10,000 woods open to the public, and allows you to search for  features such as car parks and wheelchair access.

Children playing with toys

Toy libraries

Most Toy libraries have specialist toys for disabled children to borrow. Many projects also have stay and play opportunities. There may also be mobile home visiting services. Find out more at the National Association of Toy and Leisure Libraries.

Just ask!

Most attractions offer disabled discounts, special access or carers-go-free solutions, but people don’t often think to ask. Do ask whenever you are visiting any facility, as it can save you a small fortune.

Free cinema tickets for carers

Apply for a Cinema Exhibitor’s Card, which allows disabled people to obtain one free ticket for a person accompanying them to the cinema. The card costs £6.00 and last for one year.

Get away from it all

Tourism for all

Disabled child surfboardingPlanning a short break? Check out Tourismforall.org.uk  which provides useful information on accessible holidays in the UK and abroad. Their website also has a directory of holiday venues.

Disability Holidays Guide

The Disability Holidays Guide lists specialist tour operators for wheelchair users. You can search the guide for accessible hotels, villas and cottages. You can also find travel insurance, hire accessible transport and pre-order mobility aids and equipment.

Accomable

Described as ‘Airbnb for disabled people’  – if it’s just accommodation you’re looking for, check out Accomable for listings of accessible places to stay in the UK and abroad.

Get creative

Child with painted face sewing

Treasure hunt

My kids love a treasure hunt. The other day we collected sticks to make a pretend camp fire. Other times the ‘treasure’ has been stones or daisies. It’s a good, inclusive activity disabled and non-disabled children all enjoy.

Cheerio necklace

Try threading cheerios with your child to make an edible necklace.

Smelly socks game

Use up some old small socks or go to a charity shop. Then scent some cotton wool balls with different smells like tea, coffee, lemon, apple or tomato ketchup. Try a variety of smells, taking care not to use anything to which your child may be allergic. When the cotton balls are dry and all the ingredients are placed in the socks, tie the socks up with a ribbon, and play a game of Guess the smell.

Wrapping paper’s not just for Christmas

If your child is visually impaired children or has a sensory impairment, sparkly Christmas wrapping paper is very good for catching and holding attention. Gold, in particular, or anything with a rainbow/prism effect seems to work well to stimulate those with visual impairment.

Pitch perfect

Play tents make great sensory spaces when kitted out with everyday items e.g. fairy lights, hanging old CD’s, tinsel, etc…

Get scribbling

Stick some blank paper on a wall somewhere and turn it into a ‘graffiti wall’. You can also paint a wall with blackboard paint or put up a big white board for graffiti fun.

Children's artwork

Star in your own film

Use your camcorder – or the video on your phone if you have one  –  to make a film  of a favourite book. We did The Tiger Who Came to Tea, using a toy stuffed tiger, shots of our table set up for tea, empty food packets, and a homemade cardboard claw peeking round the front door. You can do lots of voiceovers to explain what is happening, or do it documentary-style and interview the Mummy, the child, the cafe owner, Daddy, the Tiger etc.

Get gooey

Make home-made slime. Get a pack of cornflour, mix it with water so it’s gloopy but not runny and then add green food colouring.

Life-sized cardboard cut-outs

Use either a large piece of card or lining paper (joined together, if necessary). Draw around each other and cut up old clothes and cloths to dress your portraits up.

A real catch

A velcro ball and catch mitt set has been fantastic for my son, who is unable to catch a regular ball. Great for fun, cause and effect and coordination. Ours was under £5 from eBay – check out ‘Spordas No Miss’.

Cinema club

Turn your house into a cinema. Choose a DVD together (bought or borrowed from the local library) make tickets, posters etc. Invite friends if you’ve got the space and then make popcorn, close the curtains and enjoy.

Make a den

My daughter loves it if we put a sheet over the dining table and make a den. I bring some of her sensory lights in and we all sit underneath. Her brothers think it’s great too!

Home-made jigsaw puzzle

I’ve found a good cheap way to keep my daughter occupied is to get her to choose a picture from a magazine, then I cut it up, and she reassembles the picture, gluing it on to paper. You can use photos as well. You can make it as simple or complicated as you want. I use simple ones to help calm her down and more complicated ones when she needs a new distraction.

Dance competition

Put on the music and have a competition.

Sensory play

We use a plastic box and fill it with different things for sensory play. Sometimes dried beans, sand, shaving foam – we put different smells in like vanilla essence or curry powder to make it more interesting. Sometimes we squeeze toothpaste in which is good fun when you get it all over your hands because it dries quickly.

Word games

We’ve been using words on the back of paper-clipped paper fish with a magnetic fishing rod to make a game out of reading.

Rubbish instruments

Raid the recycling and make some musical instruments. Fill jars and plastic containers with rice to make shakers, elastic bands over a box can make a great guitar and balloons stretched over tubs for some bangin’ drums!

Glitter party

Poppy has very little fine motor skills and struggles with most art and craft activities. So I stuck some wrapping paper to the wall and we made hand prints on it. Then we cover it in glue and threw glitter at. Messy but great fun!

Sensory wall

We’ve created a ‘sensory wall’ by sticking old yoghurt pots on the wall – you can also put bubble wrap, biscuit packet insides, corrugated paper, sand paper ….

These tips were all contributed by parents of disabled children. Find more great tips like these, and share your own on Scope’s online community.

Why the Prudential RideLondon-Surrey 100 2015?

There’s just one week left to get your exclusive free place in our Prudential RideLondon-Surrey 100 team. You could be cycling the 100 mile route alongside people just like Chris who will be taking part for a third time.

“The Prudential Ride London is a huge and fantastic event that I have taken part from the first year. Finishing in the Mall outside Buckingham palace is an amazing experience that gives you a great feeling of achievement. Starting at the Olympic Park is also brilliant because you are following in the wheel tracks of the 2012 athletes who undertook the same challenging course. The support we get from the local communities is absolutely phenomenal with residents coming to the end of their driveways waving and cheering us on even when the weather was really bad last year!

I have a 16 year old son, Kieren, who has Downs Syndrome, so I’ll be riding for him. He needs support with basic day to day things. We’re lucky in North Wales because we have quite a good support network around us. With him being 16 we’re at the transition stage into college and further on in to adult life – obviously Scope services and their helpline is going to be quite important to us.

I’m hoping my family will be coming down for event day although this will depend on how Kieren is. I hope to bring him down with me and then he can come to the start and be there at the finish – fingers crossed he will be there but if not he will be there in spirit.”

Get your place in our team for free today and be treated to a hero’s reception, a massage in our chill out zone and TLC for your bike! We’re hoping to raise over £314,000 and will have our biggest team ever with over 600 riders taking part for Scope.

Our family adapted to Uncle Paul’s life. It came naturally. – #100days100stories

Hannah Croft works at a Scope shop in Liverpool. She feels proud to support Scope as she remembers the support her family provided to her Uncle Paul. Read Hannah’s story in the next of our 100 days 100 stories campaign

Hannah and Uncle Paul

My name is Hannah and I work as an Assistant Store Manager in a Scope shop in Liverpool. I came across the job by chance. My Uncle Paul needed a lot of care and support following an illness and I knew that I would love my job as I would be contributing to the work of Scope which is all about supporting disabled people and their families.

My Uncle Paul was one of five children, with four sisters, including my mum Ann. At 13 Paul developed a brain tumour. The radio therapy he received affected his immune system and he contracted meningitis. This left him with neurological damage which meant he used a wheelchair and needed full-time care.

A family issue

The whole family adapted to fit around Uncle Paul’s life, it came naturally. At Christmas, birthdays and parties the family all went to my Nan’s home to be with Paul. My grandparents shift patterns worked around looking after Paul. My Aunt Margaret missed her last two years of school in order to help too. Later in life, Paul had a stroke. This left him bed bound and virtually unable to move. Margaret never left home, never got married and her job was to help care for Paul. She gave up most of her life to help her brother. After my granddad died the work for my Nan and Margaret in caring for Paul increased. They got no help.Though things were hard, Paul was pretty stable and most of my memories are good ones. My Nan and Margaret got no respite. Even though other family members offered help to give them a break, they were always thinking about him.

I remember as a small child sitting on Paul’s knee and colouring in with him. I would use his crayons and he would tell me where to colour. When I got older I learned to help and support Paul. I enjoyed this as I felt grown up and important to him. He lost the ability to speak and the only words I remember are ‘yes’ and ‘no’ and sometimes random swear words. This made us laugh. However explaining this to visitors was a different thing!

The care my family gave Paul was part of my life right from the beginning. He was treated with so much love and dignity. It has not only shaped the person I am but also every other member of my family. We are strong and stick together.

A better future

I would like to see disabled people and their families given more support. Nobody told my family how to care for Paul, they just had to learn. Nobody told us about support which could have made his life better.

Paul passed away in 2008. He was 54 years old. When he first became ill, my family were told he wouldn’t live past his teens.

Perhaps if we had known of Scope then, things could have been easier. I feel proud of my Uncle Paul and of my family and I am proud to work for an organisation that supports other disabled people and their families the way we would have liked.

Would you like to make a difference by sharing your story as part of our 100 days, 100 stories campaign? Please contact us at stories@scope.org.uk if you’d like to get involved.

I had falls with my baby daughter in my arms. It was very scary – #100days100stories

Imagine being trapped in your home, alone, knowing you can’t safely care for your two small children. This was Soña’s experience last year, when her funding for a support worker was cut overnight. She has shared her story in an interview as part of our 100 Days, 100 Stories campaign.

Soña, who has cerebral palsy, was struggling to care for her small daughters, three-year-old Natalie and Mary, aged one.

Proud mum smiling at her three-year-old daughter
Soña with her three-year-old daughter Natalie

A support worker visited two hours each day to help her get out of the house, lift Mary, and take Natalie to nursery. It made a big difference, but it just wasn’t enough. Soña’s condition was getting worse and she was worried for the safety of her children.

“I cannot use my left hand at all, and my left leg is a few inches shorter than my right which makes walking difficult,” says Soña. “I’d get so tired just trying to walk from place to place, and I would lose my balance.

“I couldn’t go out with the children alone – I’d end up overturning their pushchair, and it would be dangerous.”

Devastating news

When Soña asked for extra support from her local authority, she was given shocking news. An official explained there had been a mistake with her case – she wasn’t entitled to any funding any more.

Couple in their thirties talking at a table
Soña and her husband, Adam

The family’s support was cut overnight. Soña’s husband Adam works 14-hour shifts as a delivery driver, so she was left at home alone with the children every day.

“I knew that this was not right,” says Soña. “Mary was only about nine months old, and I was starting to have major back problems and spasms.

“I was having constant accidents – I would fall several times a day and get slammed against the door or the wall. I dropped Mary a number of times, which was very scary.”

Struggling on alone

Soña tried again and again to explain why she needed support, but was repeatedly ignored. One professional suggested that if Soña couldn’t cope, Adam should give up work and become her unpaid carer.

“There was no compassion whatsoever. You’re made to feel like you’re making something up. Why would you make it up?

“I felt very vulnerable, here by myself. I was really upset and stressed. All I wanted was to be able to take my children outside, but I was basically trapped in my own house.”

After months of frustration, Soña called Scope’s helpline and spoke to one of our advisors. Realising it was a complex case, the advisor referred her to Karin, a regional response worker.

“I was quite desperate by then,” Soña says. “My situation was getting worse, and I felt like no one wanted to help me.”

Taking control

Karin came to visit Soña at her home and they talked through what had happened. She drafted letters, contacted experts to ask for legal advice, and accompanied Soña to meetings with the authority.

Two women having a conversation on a sofa
Karin, a regional response worker from Scope, with Soña

“We worked together very closely. Karin was always there to help, or to find someone to help me. She constantly reassured me I was doing okay.

“It kept me going, basically. Everyone kept shutting me down, and I was feeling like: maybe I don’t deserve this. To know there is someone out there who actually does support you made a big difference.”

When Soña finally decided to take legal action, Karin helped her apply for legal aid. Soña found a solicitor to argue her case.

“It took six months, but the outcome was absolutely mind-boggling,” she says. “I ended up getting 30 hours’ worth of support a week, far more than before. I couldn’t believe it. I’d been told for so long that I didn’t need anything.

Sona and Mary with Dor, their support worker
Sona and Mary with Dor, their support worker

“Now my carer comes for six hours a day to help me get the girls ready for nursery. We can go out and do the shopping, or take Mary to an appointment. I don’t feel like I’m a prisoner in my own home.

“Without Karin, I would still be stuck at home by myself, struggling. You need support when you’re in this situation, you can’t do it alone.

“I was made to feel like getting social care was a privilege, but it’s not. I need it just so I can have a life.”

If you’ve had a similar experience with social care, you can make a difference by sharing your story as part of our 100 Days, 100 Stories campaign. Please contact us on  stories@scope.org.uk if you’d like to get involved.

We were offered a termination. No one ever said: “He’ll bring you joy every day” – #100days100stories

Guest post by Alexandra from Dunbar. Alex’s second child, one-year-old Benjamin, has very complex needs which were discovered before he was born. She writes a blog, and shares her story with us as part of Scope’s 100 Days, 100 Stories project.

We were 38 weeks into an uneventful pregnancy, excited about the prospect of meeting our second child.

Alex's son Benjamin at two days old
Benjamin at two days old

Then, at the end of a very long Friday, starting with a routine ultrasound at nine in the morning and ending with a hushed consultation eight hours later, we were informed that our baby’s brain had not developed beyond that of a 20-week foetus. It was way too small and simple. There were big holes in the middle and smooth surfaces where there should be intricate folds.

He may not breathe on his own, they said. He would probably need to be fed through a tube, would almost certainly suffer frequent and severe seizures, and would be very unlikely ever to walk or talk.

Benjamin in blue jumperWhile we weren’t pushed towards terminating the pregnancy, if we wanted to, the papers could be signed there and then.

We went home to think it over. We returned to the consultant again and again, we spoke to friends, relatives, counsellors, we scoured the internet.

A weekend turned into a week as we considered the implications for our baby – his likely suffering, his quality of life – for ourselves, and for our 21-month old daughter, Jackie.

I know it was the doctors’ responsibility to prepare us for the worst. But no one, no one, said: “There’s a chance he might be happy. There’s a chance you might still be able to do the things you wanted, just with a little more planning. There’s a chance he might enrich your lives in ways you never imagined.”

Our adorable son, Benjamin, is now one year old, and he has changed our lives for the better in so many ways.

Benjamin and his sister Jackie in Santa hats
Benjamin’s first Christmas with his sister Jackie

We haven’t yet missed out on anything we’d planned – we’ve been on trains, buses and family bike rides, bought a big old house on the coast, been abroad on holiday. My husband and I are closer than ever. I have learned that life is not so much about principles – it’s about caring.

We met some amazing people – mothers, fathers, grandparents, carers– fighting for their children, fighting to make their world a better place, sharing everything they have.

Benjy’s big sister loves him to bits, comforts him when he cries, plays with him whether he wants to or not! He’s the first thing she asks for when she wakes up in the morning.

Benjamin with his mum Alex
Benjamin today

Our son is a contented, even joyful, little boy and aside from his disabilities, he is healthy.

Yes, there are tough days. No one caring for any two children could truthfully say otherwise. Yes, we worry about the future – his and all of ours. Yes, it is early days yet – things may, and probably will, get harder.

But I firmly believe that Benjamin will continue to brighten our lives every day. He proves that there is another realm of possibility outside the grim, medical, worst case scenario.

Find out more about the 100 Days, 100 Stories project, and read the rest of the stories so far.

Parents share their stress-busting tips

A major new study published by Scope last week revealed that many parents of disabled children are suffering from extreme stress and isolation.  As many as 80 per cent said they felt frustrated, stressed and exhausted.

Talking to other parents in the same position, can not only provide much-needed emotional support, it can be a really useful way of picking up practical advice and ideas, which is why we have created the tips feature in our new online community.

Below are a selection of stress-busting ideas we’ve picked out from the tips. We’d love to hear yours too, so please add them to the comments box below!

It’s ok to ask for help

Friends and family are often very happy to help, but don’t know unless you tell them. Draw up a list of suggestions you can use to ask friends and family for help, for example school runs, baking birthday cakes, mowing the lawn, helping siblings with homework, being on an emergency rota for overnight hospital stays.

Choose your battles

I have learned the hard way to choose my battles carefully. I have to decide which battles really are important for me to win and which I can leave. The important ones involve safety and health. Some others you have to let slip for your own sanity!

Keep your sense of humour

My husband and I play a game where we place bets with each other which of our three disabled children will wake/ kick off etc. at what times. The ‘winner’ gets a treat from the other partner. Sounds silly, but making light of intensely stressful situations really does help us cope.

Do a happiness audit

Think about what gives you happy feelings and do it as often as possible – whether it’s singing, dancing, laughing, sex or chocolate. Create a ‘Prescription for change’ for yourself, listing the things you need twice a day and twice a week. Then stick it on your fridge.

A positive note

When you have a disabled child, filling in forms can be very depressing as you focus entirely on the negative. So I write on a separate sheet of paper one good point for every negative. I laminate this and put on the fridge so that when things are tough I can read it and remind myself of the fab things about my three disabled children.

Get all the help you can

I would suggest parents try every bit of help on offer – Portage, Child Development Centres,  local libraries, health visitor, support groups, etc. It’s much easier to opt out than to try and opt in later, when your child is older. Referral for specialist services (e.g. portage) can take ages and is worth getting sorted out as early as possible.

Be honest about your limits

Therapists mean well when they give you lots of exercises to do with your child, but sometimes, it’s impossible to keep up with them and still have time to do stuff like eat, sleep and breathe. Be open with the therapists if you feel overwhelmed, or need more ideas for exercises that can be an organic part of your day (say, bicycling a tot’s legs as you change her nappy).

Share the load

Let your partner help when they can. Yes, they may do things differently, but that isn’t necessarily a bad thing.

Face to face

Talking to other parents who are going through the same thing as you is always helpful. Face 2 Face is a one to one parent befriending service, run by Scope, for parents and family of disabled children.

Get plenty of exercise

Exercise is great for your overall mood. I’ve taken up weights, because my son is large and I worry that one day I won’t be able to manage him. Being fit has given me huge confidence in how I manage my son, which in turn has improved his behaviour.

Schedule time for yourself

Try to make a little quality time for yourself each day even if this means leaving the person you care for in front of their favourite DVD or TV program for half an hour. It won’t do them any harm! If you can, try and take half a day a week off – book a babysitter, book your child into a crèche/playscheme, play date, or family – give yourself that time to re-charge.

Organise your home life

Buy two of non-perishable items like washing up liquid, so you always have one in reserve. Have a whiteboard in the kitchen to write on when things run out. Plan your meals for the week – even think about having Tuesday as curry night, Wednesday pasta, Friday fish, etc. to save time thinking. If you can afford to, get a cleaner.

Get a good night’s sleep

Sleep is very important. If you are tired, you will feel even more stressed. Try taking it in turns to get up at night so one person always has a full night’s sleep.

Yoga for you

Take up Yoga to stop muscle injuries especially if you have to do lots of lifting and carrying.

Friends and hobbies

Friends and hobbies are enormously important because they take you out of your role as a carer for a short while. I try and mix with people who aren’t carers too, so I get to focus on something else for a bit.

Time out

I started running after the birth of my disabled daughter eight years ago. It’s my time out – time for me to de-stress, clear my head & take out my frustration on the streets. I come back a happier and calmer person, ready to deal with the real world again. I think we all need time out for ourselves.

Have you got a stress-busting tip to share? If so, let us know in the comments below.

Explore our other tips.

I know you’re trying to be nice – #100days100stories

Amanda’s six-year-old daughter Lucia has cerebral palsy. In this guest post from May 2014, Amanda talks about how people’s attitudes can make life awkward for her family. We’re republishing Amanda’s story here as part or our 100 days, 100 stories campaign

Amanda and her husband Anthony with Lucia, Georgia and Roman
Amanda and her husband Anthony with Lucia, Georgia and Roman

The moment other parents hear that Lucia has cerebral palsy, we have to deal with their preconceptions about what disabled people are like. We get people talking loudly and slowly, and people saying ‘What’s wrong with her?’ The answer is that nothing is wrong with Lucia. She just has cerebral palsy, and sometimes uses a wheelchair to get around. ‘Lucia’s wobbly legs’, as our other two children, Roman and Georgia, describe it! You get almost pitying looks from other parents – and you know, I wouldn’t change Lucia for the world.

Support online

I joined Scope’s online forum soon after Lucia was diagnosed, and it has been brilliant. Sometimes, when Lucia is ill or tired, we do feel sorry for ourselves, and having other parents to talk to and keep us positive is a huge help. You can also pick people’s brains for practical advice on things like special needs statements, disabled badges and mobility aids. We were very unsure about getting a wheelchair for Lucia, but people on the forum said to go for it – and it has been amazing. It has really improved our quality of life.

Don’t see the wheelchair

A couple of times, people have said, ‘You know, if you didn’t tell me I’d never have guessed Lucia is disabled’. It’s really not what we want to hear. When it comes to disability, you just adapt – we don’t need to pretend Lucia isn’t disabled. Sometimes we get stopped when we’re out shopping, and people make a massive fuss of Lucia’s wheelchair – ‘Ooh, look at the little girl, look at the wheels, aren’t they pretty?’ I know people are trying to be positive when they give us extra attention, but it’s really awkward for us. We much prefer it when no one stops us, no one cares, everyone just moves on. We know you’re trying to be nice, but we would much prefer if you didn’t even see the wheelchair. Even if you’re saying something positive, I’d respect you far more if you saw the person in the chair instead.

At Scope we believe that disabled people should have the same opportunities as everyone else, so let’s end the awkward.

Find out more about 100 days, 100 stories and read the rest of our stories so far. 

Undiagnosed Children’s Day 2014

SWAN UK (syndromes without a name) estimate that 6,000 children with undiagnosed genetic conditions are born every year. Today’s Undiagnosed Children’s Day has a mystery theme to highlight the fact that many undiagnosed children are medical mysteries. They’ve also created this fun video for the day:

Last month, Lauren Roberts from SWAN UK wrote a blog for us about the practical reasons why a diagnosis can be so important – Why do you want to label your child? We had a big response online to the blog, with many people agreeing with Lauren that without a diagnosis getting the right support is incredibly hard:

“If you don’t get a diagnosis your children don’t get the help they desperately need or deserve from the medical profession.” – Pam

“My daughter is a SWAN and hardly gets any help what so ever, anything that could actually help her that costs money she’s not considered for using her non diagnosis as a ‘one day she might’.” – Kathleen

“From experience I know this is extremely difficult and no offers were made before diagnosis, only after.” – Andrea

Read more of the responses on Facebook.

SWAN UK bring families together through an online community and family fun days.