Tag Archives: World Down Syndrome Day

I wanted to help other dads – #100days100stories

Today is World Down Syndrome Day, so we’re sharing Austin’s story as part of our 100 days, 100 stories campaign.

Austin quit his job to become a full time dad to his son Christian, who has Down’s syndrome. Here he talks about the training he received from  Scope’s befriending service and how it helps him  support other parents.

“I  left my job at a solicitor’s firm to become a full-time carer when my son Christian was diagnosed with Down’s syndrome. Three years on, I volunteer for Scope’s befriending service, giving emotional support to other parents of disabled children.”

Little boy with Down's syndrome sitting on a chair

“My partner Victoria and I found out Christian had Down’s syndrome just five days after he was born prematurely.”

“I was at home waiting to pick my other son Lawrence up from school and I got a phone call from Victoria,” Austin says. “I knew immediately that Christian’s blood tests for Down’s were positive because all I could hear on the phone was crying. Victoria was inconsolable.”

Craving emotional support.

“There was no follow-up and no support,” says Austin. “I’m pretty sure most of the leaflets ended up in the bin. We were in no fit state to take in a load of information.

“The one thing that did make a difference was that one of the nurses had a daughter with Down’s. She was wonderful, absolutely superb. She came in and sat down with Victoria, put her arm around her, and spoke about her own daughter. She made such a difference it was untrue.”

“Training for Scope’s befriending service made me realise I’m not alone.”

A few months later, Austin realised he couldn’t combine his demanding job with giving Christian the care he needed, so he decided to become a full-time dad.

In the first 18 months of Christian’s life, he was admitted to hospital nine times with chest and bone infections. On one of those hospital visits, Austin spotted a poster for Scope’s befriending service. Knowing the difference the nurse had made for him and Victoria at the hospital, Austin decided to train as a befriender.

“The training was first-class. I loved it because it made me realise I wasn’t alone. There are days when you don’t want to get out of your pyjamas and leave the house. Doing the Scope training made me realise that most other parents have those days.”

“There are no other male befrienders in my area, but you can bet there are plenty of dads who need someone to talk to.”

Nearly a year after he did the training, Austin remains the only male befriender in Liverpool.

Christian is now three, and recently started nursery. “Christian is a bundle of fun and a bundle of love”, says Austin. “He’s a joy to be with.”

One morning a week Austin volunteers at the Alder Hey children’s hospital, giving support to parents whose children have just been diagnosed, or are recovering from major surgery which has left them disabled.

“One man I supported has a baby daughter with Down’s. On the first day we met, I said to him: ‘the one thing about children with Down’s syndrome is that they radiate love. You’re never ever going to get love like that from any other human being in your life. It’s such a wonderful thing but you can’t see it at the moment because she’s only a baby.’”

“Scope offers an amazing service. It can really hold families together at a time of absolute crisis.”

Austin remembers how hard it was dealing with the emotional anxiety of finding out about Christian’s condition. “If we’d had some human touch at that early stage, it would have made all the difference. We needed to speak to someone who had been there and who understood. You cannot underestimate how valuable Scope’s befriending service is.”

He also hopes more dads will become Scope befrienders: “Men bottle things up and don’t talk about their emotions as much as women.

“It’s only when they’re put in a room with someone who’s been through the same things as them that they will open up – that’s why befriending is so important”.

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

Our top Twitter and Facebook moments of 2013

As we get ready to bring in the New Year we’ve been looking back at what we achieved with your support in 2013. Here are some of the top Twitter and Facebook moments from 2013 that got you liking, commenting and retweeting.

Celebrating achievements

Jack Caroll - text reads: Good luck Jack!

Two of our most popular Facebook posts were about the achievements of two young people with Cerebral Palsy. 14-year-old Jack Carroll hit the headlines in May when he came second in the final of Britain’s Got Talent with his comedy. Our good luck message on Facebook got over 2,000 likes.

In November we shared the news that seven-year-old Holly had been chosen to model in a new campaign for Boden clothing. Holly and her great achievement received over 1,200 likes.

Campaigning and influencing the Government

When MPs started debating the Children and Families Bill in February we wanted to make sure disabled children were not forgotten by Michael Gove, the Secretary for Education. Almost 200 people joined our Thunderclap and thousands of you used the hashtag on Twitter #GoveUsABreak which helped get the message to over 4 million Twitter accounts!

More recently, many of you shared stories of how your child had been excluded from activities in your local area on Facebook. Read the latest news on the Bill from the Council For Disabled Children.

Woman with post-it on mouth which reads: I care

We’ve also been campaigning about social care this year. Our Britain Cares campaign asked people to send in a photo to show that they care about social care for disabled people. Thousands of you have sent in photos, shared the campaign on Facebook and Twitter, and our YouTube video has now had over 180,000 views.

In October, with the Care Bill going through Parliament, we joined with other charities in the Care and Support Alliance to ask “What do you do with yours?” and raise awareness for the importance of social care.

Challenging attitudes towards disabled people

The #HeardWhilstDisabled hashtag is used to share some of the things said to, or overheard by, disabled people. BBC Ouch wrote an excellent story about the hashtag with some of the worst examples such as “Isn’t it lovely to see them out and about?”.

This tweet was sent following the Panorama expose on the Work Programme. Panorama reported that disabled people were referred to as LTBs – lying, thieving bastards. We spoke out about how completely unacceptable this was. Read our full response to Panorama.

In February we were outraged when Councillor Collin Brewer said that “disabled children cost the council too much money and should be put down.” Hundreds of you shared the news, commented on the story and were pleased when we shared the news of his resignation shortly afterwards.

Raising awareness

We’ve also been using Facebook and Twitter to increase awareness for impairments and conditions such as Down Syndrome, Autism and Cerebral Palsy.

For World Down Syndrome Day in March our post sharing Sarah and Phillip’s story on Facebook reached nearly 35,500 people.

For World Autism Awareness day in April we shared a post from Ambitious about Autism asking people to share what ‘Autism is’ to them. Thanks to the support of Keith Duffy, we potentially reached almost 300,000 people on Twitter. 

And for World Cerebral Palsy Day in October we asked you what you thought everyone should know about Cerebral Palsy and summarised your responses in a blog which has been read over 7,000 times.

Thank you for all your support in 2013. If you don’t already you can follow us on Twitter, subscribe to us on YouTube and like us on Facebook.