Tag Archives: Down’s syndrome

Lesley’s story: My day centre funding is under threat

Guest post from Nick Duquemin, Stories Assistant at Scope.

I spend a lot of my time interviewing disabled people and their families. Many use council-funded social care, and almost everyone I’ve met is worried about how cuts to services and funding are going to affect them.

When I arrive at Lesley’s home one Monday afternoon, her mum, Jan, tellsPicture of Lesley me she isn’t home yet. Routine is very important for Lesley, 45, who has Down’s syndrome, and she couldn’t bear to miss a moment at the Goldhay Arts day centre in Peterborough.

Lesley’s been going to the centre five days a week for the whole of her adult life. She chose it because she loves to act, dance and do art, and it is her main source of social contact. She has friends there whom she has known for two decades.

Jan holds down two part-time jobs, which she fits around her daughter’s needs. Lesley gets frightened if she is left alone in the house for too long. Without day care, Jan would be unable to work.

But Lesley and Jan fear they will soon lose this lifeline. Peterborough City Council, which funds Lesley’s day care, currently supports people, like Lesley, whose needs have been assessed as ‘moderate’.

Now it plans to raise that threshold to a higher level, ‘substantial’, which means that only those with more urgent care needs will receive funding.

Lesley and her mum are worried she will lose her place at Goldhay Arts if she is reassessed as being of moderate need.

Jan has had to fight on countless occasions to make sure Lesley gets the care she needs, but she is dreading this latest battle. Worst of all is the uncertainty.

“You seem to hear a different thing every time you ask,” she says. “It could be that next week we get a letter saying she hasn’t got a place.”

Lesley arrives home and proudly shows me pictures of her family, including her dad and her stepdad, both of whom have passed away.

Then she brings down more photographs from upstairs – this time of herself, dressed up at the arts centre’s summer ball and performing in talent contests on holiday. Jan stresses that Lesley’s confidence comes from her time at day care, and Lesley agrees.

“All my friends would miss me if I’m not there, and I can’t make new friends. I’ve got lots of friends at Goldhay Arts; I’ve known some of them for 18 years,” she says.

I’d be bored, I hate staying in. I’d be sad – a lot. I’d be scared if anything goes wrong, because I love that place.”

Lesley’s day care gives her a link to the outside world, and it means she can live her life as she chooses.

Without it, she and Jan would feel very alone.

How do you use your social care? Share your stories on Twitter using the hashtag #WhatDoYouDoWithYours and follow other people’s stories.

My son tried to cook dinner and drive my car in middle of night!

They really take it out of you. But imagine if you were woken most nights because your child just can’t sleep. It’s a problem that many parents of disabled children talk to Scope about. Here, Helen from Peterborough describes her son’s nocturnal adventures – and how our Sleep Solutions programme is putting an end to their sleepless nights.

Sleepless nights.

My son is 10, almost 11, but he thinks he’s about 35!

Luke has Down’s syndrome. He’s full of beans and has no fear of danger.

Luke used to sleep well, but when he changed schools last September he missed his old friends and I think the change in his routine must have unsettled him. He has no problem getting to sleep, the problem is that he wakes up fully alert in the middle of the night and gets out of bed. This could happen four or five times a night. Once he’s awake, he gets bored.

That’s when the trouble starts

Once, he got up at 4am and tried to drive my car. I didn’t hear him open and shut the front door or get into the car. Luckily a neighbour noticed – he just happened to look out of his window and saw my car with all the lights on.

Another time, he almost set the house on fire. I woke up to hear a strange clicking noise, opened my bedroom door and saw Luke sitting on the landing. He had the fire lighter and he was transfixed, looking at the flame as he burnt the tassels at the end of a wool rug. As I carried it downstairs, the rug caught fire. I was in total shock.

That was the wake-up call for me. I realised I had to do something to help Luke sleep before he hurt himself or someone else.

Support from Scope

Sleep Solutions was such a great help. The beauty of the sleep team is that they really do care – you can just tell they do. They take time to get to know you and your child which helps them establish the specific sleep problem and how to treat it. You don’t get that level of support from a book; it’s the human contact that makes all the difference. They gave us a routine for bedtime, which is surprisingly difficult to achieve. Sometimes, it’s basic stuff that you already know but having support from Scope’s sleep practitioners makes it easier to put into place.

Our sleep practitioner came to our house and got to know us. She looked at Luke’s bedroom and how it’s laid out. We realised that Luke often gets cold in the night because his single duvet slips off, which wakes him up, so I brought him a queen size duvet and also got him some black out curtains.

Scope told me about foods which contain melatonin from a brain chemical called serotonin which can trigger sleep. I took this information and started doing some web research, there’s loads of information online. I now try to include more bananas, turkey, chicken, nuts, milk, honey, salmon and tuna in Luke’s diet. I also look out for foods which contain Tryptophan, such as cereals like porridge or anything that contains oats, which aids sleep. I don’t give Luke any coca products four hours before sleep, so if he does get a chocolate treat it’s as he gets home from school or mostly weekends.

The difference it’s made

Today, I spend a lot more time on Luke’s night routine. I didn’t always bath him at night but now I make sure I do, because it helps him relax and is a signal that it’s time to go to bed. Sometimes, Luke still wakes in the night but he usually goes back to sleep on his own. He knows if he gets out of bed and starts messing around, he won’t get his reward at the end of the week.

His school has noticed the difference too and his teachers are really pleased with his performance now. He’s been held back for the last couple of years but they say he can move into the next class soon.

Support services like Sleep Solutions are so important to parents like me. The Government is cutting so many services at the moment, it feels like parents of disabled children are being abandoned. That’s why it’s so important that Sleep Solutions carries on doing such great work.

Please make a donation to support more families like Luke and Helen get the support they need.

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.

Michael Gove must stop ignoring families with disabled children – tweet #GoveUsABreak today!

On Monday, for the first time MPs are debating the Children and Families Bill – this is the biggest chance to improve support for disabled children in 30 years. For the 700,000 disabled children across the country, it could be a day full of anticipation.

But the reality for these children is that the Bill is bitterly disappointing. The proposed changes will make little difference to thousands of families, or ease the pressure on parents seeking support for their disabled children.

I spoke to Heidi last week, whose daughter has Down’s Syndrome. Like many parents, she feels let down by such a wasted opportunity. She said the Government don’t understand just how “time-intensive and emotionally draining” it is to be the parent of a disabled child.

“You feel like you’re continually battling to get services and support, just to try and get your child to be part of society.”

Heidi worries that her daughter is very socially isolated. Even the support she does get, like speech and language therapy, is under threat. Heidi has to fight to ensure her daughter keeps even this basic support. And shockingly, therapists are put under pressure by local councils to tell parents that their children don’t need their support.

We know Heidi is not alone. Every day, we speak to parents who tell us of an on-going battle and the constant feeling that their child’s needs are less important than council budgets.  Sharon, whose son has Asperger’s, feels the current system is “impossibly difficult”.

For Mums like Heidi and Sharon, and their children, we must make the Government see how important support for disabled children is.

Michael Gove MP is the Secretary of State for Education, it’s his responsibility and he can’t ignore families with disabled children any more – so let’s get his attention!

Join us and tweet using the hashtag #GoveUsABreak. Share a personal experience if you have one, or just say how you feel about families with disabled children being neglected, and encourage your friends to do the same.

Here are a couple of examples:

‘You win one battle, then onto the next. It’s never-ending.’ Disabled children’s families need Children&FamiliesBill to do more #GoveUsABreak

I’m stunned at how tough it can be for parents of disabled children. Why doesn’t the Children&Families Bill do more? #GoveUsABreak

We must tell Michael Gove to do something now for families with disabled children. Join us and together we can show the Government that they must give families with disabled children a break.

If you’re not already part of our Thunderclap action – please join now! On Monday we can make sure MPs know how valuable local support is for disabled children.