Children and their families need our help

Jan 30 2010 by Hannah Davies, The Journal

AS PART of the Children’s Foundation’s Healthy, Happy, Safe, appeal HANNAH DAVIES speaks to a couple whose son’s autism left them feeling isolated until the charity helped.

CLAIRE Watkins and Marcus Power are both keen to share their experiences bringing up their five-year-old autistic son.

The couple, Claire, a stay-at-home mum, and Marcus, a reader in geography at Durham University, know just how important sharing their story is for the parents of other autistic children.

Isolation and uncertainty following their son’s diagnosis meant the couple, of Kenton, Newcastle, felt at a loss.

“We’d never had personal experience with autism,” Marcus explains.

“It was a time of feeling completely at sea.”

One of the things which helped the couple come to the terms with their son’s condition was discovering the Daslne network, which is funded by The Children’s Foundation. Daslne (the database of children with autism spectrum disorders living in Northumberland and Tyne and Wear) launched in 2003 and puts parents of children with autism in touch with other people and services which can help them.

Claire says: “We really didn’t know much about the condition at all and especially what it would mean for us as parents.

“Daslne really helped us and stopped us from feeling so alone.”

Claire and Marcus, both 38, met and fell in love in Bristol. Their happiness was completed when Claire discovered she was pregnant.

Conor was born in June 2004 and, at first, seemed like a regular little boy.

In the same year Marcus, originally from Luton, got a job at Durham University, as a lecturer. He’d fallen in love with the North East as a student at Newcastle University and the couple were delighted to make the move north with their 15-month-old son.

Claire said she first had suspicions there was something different about their son when he came up to one-and-a-half years old.

She adds: “His diagnosis was complicated by the fact he had glue ear.

“So initially the health visitor said his lack of language development was to do with that.”

Marcus and Claire remained unconvinced. But, to cure his glue ear Conor underwent an operation. Marcus recalls: “We had a follow-up meeting with a consultant who asked us if Conor had improved since the operation.

“We said not and he mentioned a few other problems and said ‘if not we may be talking about the A-word’.”

The couple didn’t know what the A-word was at the time.

But Claire took Conor to the Sure Start group in Kenton and asked if their speech therapist would work with him.

She recalls: “She came to the house and said this is way out of my head, you need to get the special needs speech therapist to look at him.”

This began a chain of events which led to meetings with doctors, social workers and specialists, all trying to get to the bottom of Conor’s developmental problems.

The couple have the date of the diagnosis, December 12, 2006, etched on their minds.

“It wasn’t so much of a shock by that point,” Claire recalls, “and being a full-time mum I knew something wasn’t right.

“I ‘d been sure it was ADHD but that can be a part of autism.”

Conor was diagnosed with core autism, a lifelong developmental disability that affects the way a person communicates and relates to people around them.

At five years of age Marcus still cannot talk.

He is dependant on his parents for toileting, dressing, feeding and mobility.

Claire adds: “Core autism is on quite a severe scale. He exists in his own world, he finds difficulty with communication. He also needs routine. When he goes for a walk it had got to be exactly the same route or he gets very upset.”

Marcus says: “We are trying to bring him back in into his own world. He really needs to do things in the same order otherwise he gets very upset.

“It is restrictive because we have to really think about what we are doing and plan it around his routine.

“He gets very upset if he doesn’t go for his daily walk. It is very stressful trying to plan everything out and if something goes wrong he can lose it.”

Because Conor can’t talk his parents use a picture exchanging system.

“He’s become much better,” Claire says, “I’ll show him a picture of a bath and he’ll begin to take his clothes off.”

Conor is communicating with his parents far more than he used to. Claire and Marcus partially put this down to the influence of his school The Thomas Bewick School in West Denton, a school which caters specifically for autistic children.

“We can’t believe how lucky we are living near the school,” Claire says.

“The staff have really helped Conor and we are hopeful eventually he’ll be able to start speaking.”

The autism also affects Conor’s sleep patterns which are often erratic and inconsistent. Meaning Conor (and his parents) often don’t have the energy they need to cope with their tiring situation.

Marcus says: “He wakes quite a lot during the night so exhaustion is also a factor, although he has slept better recently.”

Connor also has health problems associated with his autism. “He has asthma and he has a weak immune system. If there is something going around then he will catch it,” Claire says.

Day-to-day life continues for the family, and they adore their son, but it isn’t easy.

“Within the confines of the house everything is fine,” Marcus explains, “but when you go out, the outside world isn’t as easy to deal with.

“The attitudes of other people are often the hardest thing to deal with.

“People see him, he’s quite a big five-year-old, in a nappy and they make comments which can be very upsetting.”

Claire and Marcus say they won’t have any more children.

They did discuss it but the risk of them having another child on the autistic spectrum was too high. Not that they wouldn’t love another child but, Claire adds, “I don’t think it would really be fair to the other child.

“Looking after Conor is so demanding and time consuming it’d be impossible to devote as much time to another baby as I’d need to.”

Time for themselves as a couple is also at a premium.

Marcus confesses: “In some ways it puts a strain on our relationship it is difficult to do stuff together and think about each other.”

The couple receive funding for respite care for four hours every other week, where a teacher from Conor’s school comes to look after him on a Sunday so Claire and Marcus can spend some time together.

“It might not seem like a lot of time,” Claire explains, “but those four hours are fantastic.

“It means we can go shopping, which is difficult with Conor, or have a Sunday lunch.

“Just to talk is so important.”

Claire and Marcus say support networks such as Daslne are a lifeline in coping with a child with autism.

“When you know other people are experiencing the same things as you, it just makes it a lot easier,” Claire says.

“I’d urge anyone to sign up to the Children’s Foundation Happy, Healthy, Safe, appeal. To have the support we have in this region is invaluable.

“And the more people who know about autism the more understanding they are and the easier it is for parents and children like Conor.”

To sign up to the Happy, Healthy, Safe appeal you can contact Hannah Jackson at The Children’s Foundation on 0191 282 0897, email hannah.jackson3@nuth.nhs.uk, or download a form from www.thechildrensfoundation.co.uk

WHY I’VE SIGNED UP

BUSINESSWOMAN Laura Maddison is the first to sign up to The Children’s Foundation’s Healthy, Happy, Safe appeal.

Laura said: “The Healthy, Happy, Safe appeal is one that I think is really relevant to parents like myself and Paul, we are lucky to have a healthy four-year-old, but we don’t take that for granted.

“The work The Children’s Foundation are doing to increase awareness of those that aren’t in the same position as us is invaluable to the kids that need it in the region. I’m sure almost everyone knows someone whose children have been ill or needed extra care but haven’t been aware of an appeal like this.

“It’s a great way to regularly help those who need it most.”

Laura is an entrepreneur who runs her own recruitment company, Altitude Recruitment in Gateshead.

Not only has she signed up to the charity’s new appeal, but she has also roped her husband into doing this year’s Great North Run with her for The Children’s Foundation, as well as becoming a member of the charity’s fundraising committee.

DASLNE AND THE CHILDREN’S FOUNDATION

DASLNE (the database of children with ASD living in Northumberland and Tyne & Wear) launched in 2003.

It is the first of its kind and supported by The Children's Foundation.

The database is used as a resource by parents, health professionals and local authorities to access accurate information and to help in planning services for children in the region.

The database project helps families in understanding the needs of their autistic child.

The Daslne newsletter, produced by the team, gives families vital information on how to deal with a variety of difficulties including eating, sleeping, anxiety and temper tantrums. Claire and Marcus say that coping with Conor’s problems as a family can be lonely and isolating but membership of networks like Daslne has made them realise they are not alone, providing crucial information and advice as well as access to cutting-edge research on the condition.

Claire and Marcus fully support the Happy, Healthy, Safe appeal launched by The Children’s Foundation to provide support and advice to families like theirs, while also funding valuable research into mental health issues.