Tag Archives: disabled children

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.

Descriptive praise – how to get your child to cooperate!

This is a guest blog from Noel Janis-Norton, our online community’s parenting advisor. Here she explains how to use a technique called ‘descriptive praise’ to get your child to cooperate. 

One of the most frustrating things about being a parent is the endless repeating and reminding, just to get our children to do what they’re told. In the heat of the moment it’s easy to forget that children aren’t born knowing that they’re supposed to do what we tell them to do. Cooperation is a habit that they need to learn.

Mum and dad playing at a table with their young disabled daughter

My definition of cooperation is that our children do what we ask them to do the first time we ask, and without a fuss. Thankfully, it’s never too late to guide children and teens into the habit of cooperating. Of course children aren’t robots, so they’ll never be perfect. But it really is possible for children and teens to get into the habit of cooperating 90% of the time. That’s what the programme I’ve developed – Calmer, Easier, Happier Parenting, can help you achieve.

If your children tend to ignore your instructions, or if they argue or say “in a minute,” a good question to ask yourself is, “how can I motivate them to want to cooperate?” You’ve probably noticed that threats and telling off don’t actually motivate, but luckily there are more effective ways. One useful technique is descriptive praise. This is the most powerful motivator I’ve ever come across.

Two young brothers and their sister playing with multi-coloured plastic bricks

Descriptive praise is the opposite of how we usually praise.  Generally, we try to encourage good behaviour by using lots of superlatives: “Terrific!”, “Wow!”, “Brilliant!”, “Amazing!” But superlative praise is so vague and exaggerated that the child is often unclear about what was so great.

Descriptive praise is far more effective. Just describe exactly what your child did right or exactly what they didn’t do wrong, being very specific:

“You did what I asked the first time. You’re cooperating.”

“You didn’t say “In a minute”. I asked you to set the table, and you did it straightaway, without any complaining.”

Mum kneeling on the floor hugging her son

In my book, Calmer, Easier, Happier Parenting, a mother explains how descriptive praise motivated her six and eight-year-old sons to become more cooperative:

“The day after Noël’s seminar, I told my boys to wash their hands for dinner. The younger one hopped up to do what I said. I jumped in with descriptive praise, saying “You’re a first-time listener.” As soon as I said this, his older brother got up, saying “I’m a first-time listener too”, and rushed off to wash his hands. I hadn’t expected my words to have such an effect. The next day my six-year-old washed his hands and came to the table, saying “Look Mum, I’m a no-time listener because I did it before you even asked!”

When you make a point of mentioning each time your children do what you ask the first time, soon they will be cooperating more and more. You can use this strategy to improve any behaviour that’s problematic.  Descriptive praise brings out the best in children, even in teenagers!

In this short blog I can only scratch the surface of this useful parenting tool, so you’re bound to have questions. In my CD called Descriptive Praise, The #1 Motivator, I answer all the questions parents have about putting descriptive praise into practice, and give lots of examples you can use to improve a wide range of family issues.

Dad mixing cake mixture in a bowl with his young daughter with cerebral palsy

As important as descriptive praise is, it’s not the only strategy you’ll need to bring out the best behaviour in your children and teens. But it’s the first strategy. So for the next four weeks, take the Calmer, Easier, Happier Parenting challenge and start using descriptive praise whenever you notice your children doing something right or even any tiny improvement. You’ll see positive results sooner than you can imagine.

Got a question for Noel? Ask her on our online community

“My husband and I had to sleep separately”

We are currently running a sleep appeal. Has your child ever had problems sleeping? Here’s Sarah’s story.

Florence has autism and sensory processing disorder. For five years Florence wouldn’t sleep alone, meaning Sarah and her husband slept in separate beds so one of them could be with her. 

Florence always had sleep problems but they became worse as she grew older. My husband Nick and I had to sleep separately to guarantee some sleep for at least one of us. We had to stay in separate rooms because Nick was getting up at 6am to go to work and didn’t get back home until 8.30pm.

It was important from a family perspective that he at least got sleep on some nights so he could function at work. I could sleep when Florence was in pre-school, then Nick would take over at the weekends or nights when his next day was not so busy. We lived very strange lives.

We tried Florence sleeping in with her sister Isabella, because we thought she was scared to be on her own, but she still wanted us to stay with her until she went to sleep. She’d get off to sleep at 10.30pm and then be up again at 11.30pm. When she woke, she would be wide awake immediately and say she was bored.

Sarah with her husband and two daughters, sitting in a field
Sarah and her family

The toll of no sleep

It was difficult being in separate rooms because Nick is my true love. But part of Flo’s autism is her desire for routine and giving her that routine, at least, helped in some ways. However, because you’re under par having not slept, you have irrational thoughts all the time.

Because Nick and I were not sharing the same bed, I started to feel insecure about our relationship. If we weren’t the couple that we were it could have split us up. Fortunately our relationship is, and always has been, rock solid and it remains so.

Sarah, her husband and two daughters holding hands in a forest
Things started to change for Sarah and her family once she came across Sleep Solutions.

Discovering Sleep Solutions

I heard about Scope’s Sleep Solutions from a friend. I went to a workshop. It was ground-breaking for me, absolutely ground-breaking. Nick and I hadn’t had a night out in four years because we couldn’t get a babysitter that Flo would accept. We thought there was no end to it.

I came away from the Sleep Solutions workshop excited and empowered, and it wasn’t just me. I came home and shared everything I’d learned with Nick and we put it straight to work. The results were incredible.

Family life now

All of our lives have changed completely since this happened in June 2014. Florence sleeps well regularly and we still can’t believe it. I think I have just about caught up on my sleep after five years.

I don’t have bags under my eyes anymore. I have energy again and I feel like I’ve got fun in my life. I can spend time with my kids without being tired all the time. Family life is much better; Isabella can spend time on her own and Florence is much nicer to Isabella because she isn’t so tired all the time.

On last year’s summer holiday Nick and I spent every night of the two weeks in our own bed, with the girls in their room – that had never happened before!

Sarah is the face of our sleep appeal this summer.

Please donate to our sleep appeal so that more families of disabled children can get the support they need. 

“Shopping with my son and wheelchair in tow is a challenge.”

Claire is a mum to Daniel who is six. Daniel has profound and multiple learning difficulties. Claire has discovered a great solution for taking her son on their weekly food shop and wants everyone to campaign for better trolley access.

As a mum, taking my son to the weekly shop is a really common thing. But, shopping with my son and wheelchair in tow is a challenge.

I really struggle with both the standard and disability trolleys that are available in most supermarkets. Neither provides my son Daniel with the trunk support that he needs. It is also impossible for me to lift him in to a standard trolley. He’s just too heavy and tall now.

This leaves me with very few options. I could do my weekly shopping online, leave Daniel at home while I go shopping, or settle for buying what I can carry as I push his wheelchair.

I am sure that this is a familiar story to many parents of disabled children up and down the country. All of this changed for me when Sainsbury’s rolled out the GoTo Shop trolley to 650 of its larger stores.

The GoTo Shop is an adapted trolley for disabled children that provides extra postural and head support and a secure five-point harness. The GoTo Shop Trolley keeps Daniel safe and secure on our weekly shop.

The GoTo Shop Trolley has been a revelation for us, it makes life so much easier and Daniel actually really enjoys our shopping trips.

I think every family with this a disabled child should have the opportunity to use a GoTo Shop Trolley, this is the reason why I became a GoTo Shop Trolley Champion.

I am very lucky I have two Sainsbury’s stores near to me, but I like having choice. I love collecting my Tesco Clubcard Points, you can’t beat the Asda Mother and Baby Events, Marks and Spencer for little treats and Lidl fruit and veg every time. So you see, I’d like every supermarket in the UK and Ireland to have a GoTo Shop Trolley.

If you’re looking for a supermarket with GoTo Shop Trolleys, you can use the Firefly Finder App.

How to get involved

If like me you’re a parent of a disabled child, who would love to have the option of shopping where and when you want to, then we need to work together to tell every supermarket about the difference a GoTo Shop Trolley can make to our lives.

All you have to do is print out and add your name to this leaflet (PDF) and hand it in to your local supermarket managers.

Let’s raise awareness of the challenges we face in our daily lives as parents of disabled children. By showing how simple solutions can make a huge difference to families like ours we can encourage all our supermarkets to provide GoTo Shop Trolleys.

If you’re not a parent or carer of a disabled child, don’t worry! You can still get involved. Support the #GoToShop Trolley in #EverySupermarket by using our ‘Friends of’ leaflet (PDF).

You can read more about the Firefly Garden GoTo Shop Campaign on their website.

A thank you to carers across the nation on Carers Week

It’s National Carers Week. This week we want to recognise the contribution carers make to families and communities throughout the UK.

The Carers Trust Pledge

Multiple charities have come through to make Carers Week happen in 2015, and we’ve added our name to The Pledge Wall. By signing the pledge, we want to create Carer Friendly Communities – meaning that we want communities to be more aware of how important unpaid carers are in their communities.

The reality of what carers do on a daily basis needs to be more well-known and local services and systems need to remove obstacles to make a carer’s life a little bit easier. Read more about Carer Friendly Communities on the Carers Week website.

Learn more about Carer’s Allowance

Carer’s Allowance is a benefit for someone who cares for a disabled person who receives other qualifying benefits for at least 35 hours per week. If you’re looking for more information about the allowance, visit our benefits pages.

Carers on our community

Our community has groups you may want to join. For example, we have a group specifically for parents and carers. We also  have groups for discussing practical issues, such as work, money, benefitsequipment, technology and education.

You can also read our  hundreds of tried and tested practical tips on everything from travel to technology in the community. These have all been contributed by people with first-hand experience of disability: disabled people themselves, parents, carers and professionals.

Keep an eye out this week on our Twitter and Facebook pages as the week goes on for more information how we’re celebrating carers.

If I can help even one parent through difficult times, it will be worth it

Guest post from Rahna (above right), a befriender at Scope’s new Face 2 Face service in Redbridge and Waltham Forest, London. Befrienders offer emotional support to parents of disabled children – and they all have disabled children of their own. 

Rahna’s daughter Husna, 15, has a rare progressive condition called Friedrich’s ataxia.

My daughter Husna was four years old when she began to display the symptoms of Friedrich’s ataxia and Asperger’s syndrome, and we finally received a diagnosis when she was eight.

Rahna and 15-year-old Husna, a wheelchair user, outside their house
Rahna and her daughter Husna

Friedrich’s ataxia is a rare inherited disorder that causes progressive damage to the nervous system. We were told that Husna would gradually lose the use of her legs and arms, become blind, deaf, lose the ability to eat, swallow and speak.

There was nothing we or anyone else could do. For a parent, there is nothing worse you can hear.

How I felt

My world had fallen apart. I was dealing with my own emotions and everyone else’s. Every day was a struggle, and normal life as I knew it no longer existed.

I remember desperately wanting to speak to another parent whose child was going through a similar experience. It wasn’t until years later, when Husna started at a special school, that I found out that any kind of support existed.

Four female audience members applauding
Rahna (second from left) at the service’s launch earlier this month

I always had a lot of support from family and friends, but I felt unable to share all my feelings with the people around me – I was seen as the strength holding everyone up.

And although everyone was being so kind and helpful, no one really understood what I was going through, because they hadn’t been there themselves.

Why I became a befriender

Parenting a child with such complex issues is mentally, physically and emotionally exhausting. The day never comes to an end – it just merges into the night which merges into the next day.

You have to cope with so much, and to be able to speak to someone who has been through similar experiences, and share your anxieties and fears with them, really helps you feel less alone.

I first heard about Face 2 Face when I was approached by Andrea, the coordinator, at my daughter’s parents evening. Immediately I knew it was definitely something I wanted to do.

The training has been almost like being at a support group – everyone felt relaxed and we were able to express ourselves and talk about our personal experiences, knowing we were all in the same boat.

Group of befrienders holding their certificates
The newly-trained befrienders

I would have benefitted tremendously from a service like Face 2 Face if it had been available when Husna was younger. There were times when I was feeling very low emotionally, and really needed to speak to someone who understood.

If befriending means I can help and support even one parent through such an emotionally difficult time, then it will be worth it.

We’re launching four new Face 2 Face services in London this summer, and there are more across the country. Find a service near you.

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.

“I wasn’t going to do it for charity this year. But I saw Scope is the official charity – it made sense!”

On 2 August more than 15,000 amateur riders will take to the streets of London and Surrey for the third Prudential RideLondon-Surrey 100 – a 100 mile route on closed roads.

700 of those will be taking part for Scope as part of our official charity of the year team, and one of those is Carl. He knows the route having taken part in 2014 and will be hoping the sun shines, unlike last year!

“Box Hill was okay. But Leigh Hill was shut, we had to go down a diversion because of the weather and that was horrendous. So I’m hoping it’s not like that!” A keen cyclist, he’s often out with his friends testing themselves on the local hills. But there’s nothing quite like event day. “I think if you ride for a charity, the support you get on the day is fantastic. I rode with a couple of friends who weren’t riding for charity and they were completely in awe of us getting cheered on.”

Carl’s reason for taking part is his nephew. Connor was born prematurely and has cerebral palsy. Connor’s mum, Lauren, explained how they initially found out about his diagnosis through their physiotherapist. “One day I got asked to fill in some forms – I asked her for help because it asked what was wrong with him and I didn’t quite know what to say. She just said “well it’s cerebral palsy” but nobody had actually told us that. We were quite shocked. We just thought it was because he was premature, that he would catch up.”

Connor has received fantastic support from the local community. His first play group had a sensory room and it was here that he first walked – a great milestone when the family had been warned he probably wouldn’t walk or talk. “He walked properly. He was nearly three when he started, the same week as his cousin who was one.”

The family first came across Scope when they were looking for help choosing Connor’s secondary school – the local authority recognised that Connor was bright and wanted to place him in a mainstream school. But Lauren and her husband, Kevin, felt that Connor progressed more with one to one support at a specialist school. Connor went on to prove them wrong, attending the local secondary school and gaining good results in his GCSEs. From speaking to Scope and another charity called Network 81, they were able to encourage the school to make the alterations Connor needed for his education, including having his lessons on the ground floor instead of up two flights of stairs. But now, the real work begins – deciding what Connor should do once he leaves college. Connor is keen to get involved in a local community project, the Harwich Mayflower project, where he can socialise and discuss doing an apprenticeship.

Cricket posterWhen Carl saw that Scope were the official charity for this year’s Prudential RideLondon-Surrey 100, he felt it made sense to do the full 100 mile route with us. “Technically I didn’t complete it last year. It was 87 miles; it wasn’t 100 (due to the weather) so I felt a bit of a cheat.” He’ll be continuing his training and fundraising over the next few months, including a cricket night called Essex Legends, hosted at a local venue.

There’s still time to be a part of Scope’s Prudential RideLondon-Surrey 100 team. Get your place today and be treated to a hero’s reception, a massage in our chill out zone and TLC for your bike!

I never want another parent to feel how I felt which was rock bottom – #100days100stories

Tracy’s son Reigan, 13, has a range of conditions including autism, ADHD and Tourette’s syndrome. Getting the right support for him has been difficult, leaving Tracy isolated and depressed. Here, she explains how Scope’s befriending service helped her turn their lives around.

Tracy shares her story as part of Scope’s 100 days, 100 stories campaign.

I always knew being a single parent was going to be hard, but when my son was born he was a much harder child than I had imagined.

Tracy and Reigan smiling at the camera

He would sleep just fours a night. He was hyperactive; you couldn’t reason with him, you couldn’t get through to him. He lived in his own little bubble.

A diagnosis – now what?

His first diagnosis was actually a relief: I wasn’t a bad mother, I didn’t have this naughty child – there was something wrong. But I had no support whatsoever. I was told ‘your child has ADHD; here’s a leaflet’ and that was it. I didn’t know where to go or what to do.

I was suffering from depression and I felt isolated from other parents in Reigan’s school because of his extreme behaviour and kick offs. On one occasion he threw a chair so they moved all the other children out of the classroom for their safety.

Feeling isolated

Then a parent started a petition to have my child removed from school; it said that children like my son shouldn’t be in class with ‘normal children’. It was heartbreaking because not only was I being isolated, but my son was being isolated too.

Another time, all the children in Reigan’s class were invited to a birthday party and my son was the only who didn’t get an invite. What can you say when your child asks ‘why haven’t I been invited when everyone else has?’ It is horrible, really horrible.

Support when I needed it most

I heard about Scope from another parent. I went to a meeting and, in the two hours I was there, I received more support than I had in the previous six months. I was also referred to Scope’s befriending service, Face to Face.

It was such a relief to talk to someone who knew what I was going through, another mum of a disabled child. My befriender put me in touch with loads of organisations that could help us. Having her there to listen to my concerns gave me a level of strength I hadn’t had before.

I decided to move Reigan to a new school. Through my befriender, I got in touch with the Autism Team, a local authority service. They came in and explained to his teachers what autism is and why Reigan sometimes behaves differently.

Support for Reigan

The school put strategies in place to help. For example, if they saw Reigan getting agitated they would let him go to the playground on his own to calm down. It made a difference to Reigan’s behaviour almost immediately.

I had a befriender for just three months but I can’t express what a massive change it made to my life. It was the kick start for me getting everything back on track: I had the power to shape what was happening in my child’s life.

Making friends

Another great thing is the social life! We had gone from being socially isolated to having lots of friends. Through Face to Face, I met lots of parents with disabled kids. They didn’t blink an eyelid if Reigan started kicking off in the street. Nobody judged us or blamed us. They accepted us and that felt amazing.

I never want another parent to feel how I felt which was rock bottom. That’s why I became a Scope befriender. It is lovely to go along on a journey with somebody and see them come out the other side.

I’m so proud of Reigan

When Reigan was at his first primary school, the head teacher said he had no future. Now he is 13 and thriving at a mainstream secondary school. He’s top of his class for science and maths. He’s got friends and he’s very independent.

I truly believe that without Face to Face and the support we received from other organisations as a result, we would be in a very different place right now. Reigan just needed the right support to unlock his potential. I’m so proud of him.

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

I love helping people get things sorted out – #100days100stories

Jackie O’Kelly is a Scope regional response worker for the midlands. Here she shares a typical working day, as part of our 100 days, 100 stories project.  

6.45am I’m up making breakfast , feeding the cat and driving my teenagers to the bus stop for school, then it’s off to work.

I’m able to work remotely at an office in my elderly mum’s house, which is fantastic as I can make sure she’s okay at the same time.

9.00am I’m answering half a dozen emails which came in overnight.

9.30am I get a call from the Scope Helpline letting me know about a referral – I get 15-20 new ones a month. I ring to introduce myself, and we arrange a home visit for later in the week.

I’m working with about 20 people at any time, and lots will keep in touch for months or years as they face new difficulties.

10.30am I make a quick phone call to check in with George, a disabled man who’s applying for Personal Independence Payment (PIP). I’m worried he might be turned down for the mobility payments he really needs, so we’re working together on his application.

11.45am Squeezing in a few more emails. One of the most important parts of my job is pointing people to the right information, whether it’s about their impairment, benefits, local support or funding for home adaptations.

1.00pm A visit to meet Sarah, a mum whose four-year-old boy has just been diagnosed with cerebral palsy. She’d been told for years that nothing was wrong despite her worries, and she’s very upset.

A lot of the work I do is with parents who have a child newly diagnosed as disabled, and this is very much where my expertise lies. I primarily worked in paediatric care when I was an occupational therapist before joining Scope.

Sarah and I talk about the different forms of cerebral palsy and where she can get support. The diagnosis was a real shock and I’m not sure it’s sunk in yet. I’ll get back in touch in a week, and she’s got my details in case she needs me.

3.00pm Back to the office to check on a few more cases.

I’ve been with Scope for 17 years, and a lot has changed in that time. But the needs of disabled people and their families have remained very much the same – the need for information, advice and support.

4.15pm I’m on the phone chatting to a mum about her daughter, who has autism, and she says she’d like to meet some other parents of disabled children.

Luckily I know a dad nearby whose daughter also has learning difficulties. I give him a ring, and he’s happy for me to pass on his number.

5.00pm A last-minute referral comes through – a family with two young disabled kids desperately needing respite care. I spend an hour ringing round different agencies, and decide this needs to be referred to social services. I’ll keep in touch to see if there’s anything I can do.

6.00pm Check my mum’s settled for the evening, then it’s home for dinner with the family and a bit of trashy TV! Working with people going through such difficult times can be draining, but I love helping people get things sorted out. It doesn’t feel like work at all.

For free, independent and impartial emotional support or disability advice, contact Scope’s free helpline on 0808 800 3333 or email helpline@scope.org.uk

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