Tag Archives: Face 2 Face

Emotional support from Face 2 Face: Danielle’s story

“It’s hard when you’re on your own, and I felt like it was always going to be just me.”  Danielle

When I speak to parents of disabled children, there’s one theme that comes up again and again – so much of the time, there’s no one to talk to when things are tough.Danielle

Not long ago I met Danielle, who spent years struggling with her six-year-old son Aaron’s challenging behaviour. He was eventually diagnosed with autism, but for a long time nobody could tell her what was wrong.

“I can’t even emphasise how dark it was,” says Danielle.

“I’d go to work and I’d cry, I’d come home and I’d cry, I’d go to bed and I wouldn’t sleep for crying.

“I didn’t want to be here anymore. As awful as it sounds, if it wasn’t for Aaron I wouldn’t be here. I just kept saying to myself: he’s got nobody else.

“It was just an absolutely atrocious time. I wasn’t even leaving the house – I’d take Aaron to school, go to work, come home and we would stay in every night.”

Things changed for Danielle when she got involved in Scope’s Face 2 Face scheme, which matches parents with a trained befriender who has a disabled child, or children, of their own

Danielle’s befriender, Julie, offered unconditional emotional support – and a chance to talk, without fear of judgement, to someone who had been there already.

“It was having somebody for mDanielle and Aarone. When Julie comes round, she doesn’t turn round and say, ‘How’s Aaron doing?’ She says, ‘How are you doing, what’s going on with you?’ I think sometimes you need that,” Danielle says.

Julia, a Face 2 Face Coordinator, says some parents don’t always realise they might need emotional support.

“They’re doing all right, ‘why do they need it?’ It’s seen as a weakness: ‘I’m fine, I can manage’”, she says.

Julia’s 18-year-old daughter is disabled, and she was supported by the scheme herself before becoming a befriender and later, a co-ordinator.

“It (Face 2 Face) really supported me, having that place to go where I could talk about how painful things were, things I couldn’t say to anybody close to me, and that my friends couldn’t possibly understand. I’m mindful of that when I meet familiesDanielle and Aaron now,” Julia says.

For Danielle, it was the practical as well as emotional support from her befriender which made a difference. From her own experience as a parent, Julie suggested places Danielle and Aaron could go, and services on offer.

“Aaron and I go places now – we’ll go to farms, we’ll go to play centres and things like that, which I would’ve never have done before”, says Danielle.

“I never left the house, I was stuck with Aaron 24 / 7. Now I have a social life, Aaron’s got friends – I’m just a different person.”

Brighton celebrates as Face 2 Face turns one

Guest post from Amanda Mortensen who is the Coordinator for Face 2 Face in Brighton and Hove.

Amanda cutting the cake
Cutting the cake!

We celebrated our first year in Brighton with a party last weekend. Twenty six families came together to celebrate with a special lunch, a fantastic inclusive drumming session, a messy art table and a sensory room. Families also got a special sensory goody bag to take away. 

We held the event at Scope’s day centre, The Sharon Collins centre, which was a brilliant venue with a sensory room, music room and lots of space to move around. Barry Kidner, the team coordinator there, has been really supportive and helped the day go brilliantly and Liam Synnott, service manager, came down to help which was very much appreciated.

The day was well attended by our befrienders and their families and children from six months to 16 years all had a great time. Families told us they really enjoyed the day and thought the venue was fantastic:

“Congratulations Face 2 Face, a great service for families,” 

“A fantastic day, all of us enjoyed it. A grand event, thanks.”

“Well done for making Face 2 Face a reality in Brighton,” 

Parents also talked about feeling isolated at the weekend and really appreciated a safe, stimulating environment in which to get together.

A great year for Face 2 Face in Brighton and Hove

Thanks to money raised by HealthWish through the Health Lottery, we’ve had a great year and are really looking forward to our second year. We’ve launched groups for children with Down syndrome, groups at the city’s special schools for children with profound and multiple learning difficulties, a group supporting children who are under the preschool special educational needs service and a group for dads. Our first dads’ group last week (in a pub, obviously) was with nine local dads and we hope to reach many more in the coming year. We also ran a really successful sleep workshop led by the charismatic Emma Sweet from Sleep Solutions. Parents are still talking about it on Facebook!

Next year, we will continue to look at new ways to support parents. We will continue to work closely in partnership with the local authority, which has proven really effective this year. Look out for a creative writing course (this will look at the parent journey, but you never know, we may discover the next JK Rowling). We will be also be training up a new team of befrienders to increase our ability to offer support to parents. Our current team are amazingly dedicated and several are now starting to lead our groups as well as offering vital one to one befriending.

Well done and thank you to everyone who has made the year a success!

Amanda’s story: Caring for a disabled child and supporting other parents

Guest post from Becky, who works in Scope’s fundraising department.

Being based in Scope’s office in London, it’s easy to become detached from the day-to-day reality of what life is like for disabled people and their families.

AmandaAmanda and her husband Neil found their lives changed forever when their daughter Livvy was diagnosed with autism and severe learning difficulties at 22 months. A freelance journalist at the time, Amanda had to change direction and, in her own words, she was given “a new path”.

Amanda now works part-time for Scope as the Coordinator for Face 2 Face in Brighton and Hove.

When we sit down in her living room and start chatting I am immediately struck by Amanda’s resilient character. As well as Livvy, now 13, Amanda has three other children aged three to 11, works for Scope and is a governor at two of her children’s schools.

But despite her obvious strength, I’ve no doubt that things must have been very difficult for Amanda at times.

Livvy developed epilepsy aged five and has tonic seizures every day which Amanda says are “really horrible”. This means that Amanda and Neil have to monitor Livvy during the night, taking turns to care for her.

Recently Livvy has had to spend more and more time in a wheelchair, and has lost some of her communication skills. But it is the spontaneity of Livvy’s seizures which seem to have the biggest effect on Amanda, and it is the only time during our meeting that I can sense any vulnerability in her.

Family holidays are out of the question as it would be too overwhelming for them to take Livvy away overnight. Amanda tells me that she would be really nervous about something happening, and so they use some of the time Livvy spends in their local hospice, Chestnut Tree House, as a safe holiday instead, with the family going along to stay with her.

Amanda says that getting support for Livvy from her local authority has not been difficult, because Livvy is so severely disabled. But this is not the case for a lot of the parents she meets – many of whom are struggling with the system, and have to fight for everything.

Amanda is a powerful spokeswoman for these parents – definitely someone I would want to have on my side if I was a parent of a newly-diagnosed disabled child.

When I leave the family’s house I feel uplifted by Amanda’s story. Her outlook on life and appetite to achieve positive change for disabled people reminds me why I chose to work for Scope.

Why we share stories

“Before, I didn’t feel like I was part of the world. I was zoning out a lot because I found it hard to focus. Now everything’s changed. Now, I feel I can do anything. Not quite invincible, but not far off!”

Jamie Love shared his story recently. The young man who goes to Scope’s Craig y Parc school is an aspiring actor. Jamie recently landed his first TV role as an extra on BBC’s Call the Midwife.

Thirty-nine year-old Alice was drinking to cope with the challenge of bringing up her two autistic boys. Then she got involved with Scope’s befriending service.

She wanted to share what it’s like to have disabled children, but also the difference it can make being able to talk to someone that’s been there before.

Alice holding hands with her sons and husband
Alice and her family

Personal stories like those of Jamie and Alice have the power to motivate, educate and inspire.

In 2014 life can be tough if you’re disabled or have a disabled child. Often it’s to do with a lack of understanding – what you might call ‘innocent ignorance’.

So, it’s important to let the world know what life is like if you’re disabled. And it’s really important that disabled people and their families tell these stories themselves.

Two years ago we introduced a new way of telling stories, which we’re really proud of.

Our aim is to make sure everyone here that talks in any way about disability – whether it’s a fundraiser, a campaigner or a front-line social worker, has the chance to include a disabled person or their parent talking talk about the issue in their own words.

We have a stories team of two, plus a network of ‘story champions’ throughout Scope. We do in-depth interviews with a host of people on a range of topics; from mums like Alice and students like Jamie, to Scope staff, volunteers and people who simply inspire us. We transcribe the interviews, make films and get to know our storytellers before encouraging the organisation to work with them if they’re talking about disability.

Angela, David and Ema’s stories inspired thousands to back better local support for disabled people. The moving story of Brett who ran the Brighton marathon wheeling his son Luke dampened eyes across the country and showed not only what’s involved in training for an event, but how Scope makes a difference. A story during Anti-bullying week of a disabled school girl had an incredible online response, as did this blog from Hayley, about raising the funds to buy her three-year-old daughter with cerebral palsy the right wheelchair.

Today marks the start of National Storytelling Week – an annual event celebrating and encouraging storytelling. As Scope’s Stories Manager I’m incredibly privileged to be able to meet many amazing people and I wanted to take this opportunity to introduce some of them to you.

This week we will meet a new mum Marie, who has just had a new baby through a surrogate. Marie has brittle bone disease, meaning her bones break very easily.

Emily Yates, a 22-year-old woman, will share her story of travelling the world in a wheelchair and why writing an accessible guide to the 2016 Olympic and Paralympic Games in Rio de Janeiro means so much to her.

There will be an inspiring story from 19-year-old Michael, who has autism and recently started his dream career in public transport.

Sharing stories is fundamental to Scope achieving its vision of making this country a better place for disabled people, and I hope you enjoy the stories we will bring you this week.

I’ll leave you with the words of Rudyard Kipling: ‘If history were taught in the form of stories, it would never be forgotten.’

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Hope for heroes; disability and the befriending service with the Scope to help everyone

Jo Graham has written a blog about her interviews with parents from our Face 2 Face befriending service:

One by one, these women opened my eyes to the reality of life with, and for, a child with ADHD or ASD. A picture was painted of unrelenting vigilance and a mother’s relentless drive to keep her child safe from harm and to protect the family unit. There was self-consciousness of being stared at in public, the ready response of shame, or anticipation of a situation which would draw unwanted attention. One mother called it ‘the silent disease’ – there are no visual cues, just to outsiders a child who looks like they should know how to behave better, or a parent who should know how to parent better.

Read the full blog on nfpSynergy

Film of the week: “Diagnosis for my children lead me to alcohol and self-harming”

One of the main services Scope offers is our Face 2 Face befriending scheme for parents of disabled children. For some parents, being able to talk to another parent who understands what you are going through and can offer emotional and practical support is a vital lifeline.

Alice Boardman is one mother whose life was turned around after she contacted Scope. Her two sons had been diagnosed as being on the austic spectrum and up until that point, she was really struggling to cope. You can find out more about her story in her own words by watching the film below.

If you’d like to find out more about contacting a parent befriender in your area, please visit the Face 2 Face pages on our website.

Brighton welcomes our new support network for parents of disabled children

Guest post from Amanda Mortensen, Scope Face 2 Face Coordinator in Brighton & Hove.

On Wednesday we launched a new Face 2 Face parent support network for parents of disabled children in Brighton and Hove.

Group photo of befriends with a cake

Over 40 people attended the launch including many local parents who welcomed the service as a new source of support for families. The day celebrated the achievement of the 12-strong team of befrienders who have really bonded over the past two month’s intensive and innovative Face 2 Face training programme. Russell Evans, Area Manager, Scope South East, presented training certificates to the new team of befrienders.

Many professionals also attended including local authority leads for children’s disability services and Sue Shanks, lead councillor for children and young people in the city. Susan Brown, from the funders The People’s Health Trust also came along and said that the launch really brought the idea of Face 2 Face “to life”.

Diana Boyd, one of the new befrienders and mum to two sons with speech and language difficulties and epilepsy, said that she had really gained a lot from the intensive training programme and felt excited about being part of a team of befrienders offering such a special service to parents new to the process.

Fellow befriender Reza Ataie, dad of severely autistic twin girls added, “What a nice day! Such a big turn out and what a fantastic reunion.”  And befriender Sara Wilson, mum to a little girl with cerebral palsy added: “Fantastic launch, so proud to be a part of it.”

The launch was preceded by a free legal workshop from solicitors firm Pennington and barristers 7 Bedford Row. The legal team gave presentations on medical negligence and education.

The service is now open for referrals and the team will also be working on setting up bespoke parent-led groups over the coming months.

If you’d like more information please contact me by emailing amanda.mortensen@scope.org.uk or calling on 07436810608.

World Down Syndrome Day – Meet Sarah and Philip

Sarah is mum to Philip and lives in Chorley, Lancashire with her husband and their other son Patrick. Philip is a typical mischievous four-year-old; he loves pirates and cars, and is fascinated by animals.

When Phillp was diagnosed with Down Syndrome, Sarah felt isolated and helpless. Although her family and friends were very supportive, she felt unable to return to work, and her self-esteem suffered as a result.

Face 2 Face parent befriending

Patrick, Philip and SarahSarah discovered Scope’s Face 2 Face Befriender scheme when Phillip was a year old. It’s a network of parents with disabled children who support each other through their common experiences. She found that it gave her a safe space to talk about how she really felt. “That was one of the differences that it really made – they were prepared to listen to my darkest fears.”

As her confidence increased, Sarah attended courses on speech therapy and signing, developing skills that she could use to assist her son. Without these and the support from Face 2 Face, Sarah believes that Philip wouldn’t have been able to start mainstream school in September.

Later, Sarah trained to become a befriender herself, passing on what she had learned to new parents so they could “wear the many hats that the parent of a disabled child must wear: physio, speech therapist, playmate and educator” in order to support their child.

A future full of possibilities

Sarah and Philip are now looking forward to a future full of possibilities, thanks to the support of people like you. She told us, “I’m so hopeful for what Philip will achieve now. I know he is going to contribute to the world around him – and I can’t wait to watch!”

Thanks to your support, we’re able to recruit and train more befrienders who can then support many more families with disabled children, meaning that they too can have a future full of possibilities. Thank you.

Dog therapy

The Sun has published a story with the headline ‘See your Dogtor: Mutts who save lives and provide therapy’ – it’s a round-up of some of the great work that medical assistance dogs do. The centre piece is the story of Alice Boardman, her son Alex, six, and brother Tom, seven, and the impact Labrador-Retriever cross Lucie had when she joined the family. They live in Chorley, Lancs, with Alice’s engineer husband Dave. Read what Alice says on The Sun’s website.

But Alice has also had support from our parent support group, and here is what she had to say about Face 2 Face:

“I was a bit guarded at the beginning but Julia from Face to Face said she would just come along for a chat, so I decided to go for it. It was the best decision I’ve made and I am forever grateful to Julia. By the time you’ve made your first Face to Face appointment you’ve taken a huge step: you’ve admitted you’re not Superwoman! Julia introduced me to a lovely lady who has two disabled children. To meet another parent who has no agenda other than to support me, well, it was just wonderful. I needed someone to say: “I’ve been there.” Some of the sessions were emotional, some weren’t. For me, the sessions looked at where I am now and where I want to be in the future.

“The most empowering thing was voicing my deepest, darkest thoughts and knowing that I wasn’t being judged. Julia told me to open up and be honest about my feelings. After years of putting on a brave face it was such a relief. Julia was the first person to say to me it was ok to talk about all the hard parts of my life. Nobody had ever said that to me before. It felt like being given permission to be selfish for an hour or two and just think about me.”

Find out more about Support Dogs, the charity that provided and trained Lucie