To have a child diagnosed with a disabling condition is a tremendous shock for any parent, and the majority, once the initial facts have sunk in, find themselves asking “what now?”.

It is a stressful and anxious time when parents can feel isolated and uncertain about the future.

Contact a Family is a national charity with local volunteer representatives and should be the first port of call for anyone with a newly diagnosed child or who is seeking information on their child’s condition.

It works to put families in touch with others in the same situation and can also provide practical and  helpful advice.

Cay Byford, of Cove, is the volunteer representative for Hampshire.

She has a daughter, Amy, who is now 30 and suffers from speech and language impairment as well as several minor physical disabilities such as poor co-ordination.

Amy’s condition came about as a result of birth trauma, as opposed to being a genetic disorder, and Cay spent six difficult years struggling to cope with a child who appeared to have some kind of problem, but with no formal acknowledgement of it.

“Amy was late doing everything and I always felt there was something wrong, but nobody else seemed to agree,” said Cay.

“It wasn’t until Amy started infant school that her condition was picked up properly and she was then able to attend the Meath School in Ottershaw, which has special facilities for children with Amy’s type of difficulties.”

Twenty-four years ago, disability was much more of a taboo subject than it is today and was something that families kept very much to themselves.

As a result, finding someone else in the same situation was extremely difficult for Cay, as was obtaining the right sort of help and support from more formal sources.

Cay continued: “Once your child is diagnosed, you need support and you want to know where to go to get help.

“It was the lack of this for me all those years ago that has driven me to do as much as I can for others in this position.”

The advent of the internet has eased things to an extent but, as Cay explained, a little knowledge can be a dangerous thing and looking up conditions on the web can frighten and confuse people.

“I think the internet should be treated with caution, as sites tend to focus very much on the extreme or the worst case scenario.

“When your child is first diagnosed, you are left feeling overwhelmed, very fragile and vulnerable, so you need positive messages.

“Your world is suddenly turned upside down and often what you need is not just information but someone to talk to who will listen and understand.

“This is something you cannot get from the internet.”

Unfortunately, matters don’t end with a diagnosis. Often diagnosis is just the beginning of a long battle.

Cay continued: “You have to fight for everything. Nobody hands you anything on a plate and if you want the most for your child you have to go out and get it, whether it’s financial benefits or access to particular services, and we at Contact a Family can advise on how to do this.

“Fighting for everything can be exhausting, especially if you have other children in addition to having to deal with the challenges your disabled child throws at you.

“We can help parents with the practical aspects of form filling, which can be a minefield for the inexperienced.

“For example, when your child starts school he or she will need a statement of special needs and it is important, but not easy, to get this right to ensure your child gets the most appropriate kind of help they need at school.

“Similarly, filling in application packs for benefits and allowances can be very complicated and emotionally stressful. A tick in the wrong box or an unclear answer can mean the family lose the benefit they’re entitled to.

“This is something we can give constructive and positive help with.”

Whatever the problem, Contact a Family can talk to parents on a huge range of disabilities, from the common to the extremely rare.

The volunteers can tell parents what to expect and where to go for help.

But, primarily, the charity will put families in touch with others to end the isolation and the feeling that nobody understands what they are going through.

Cay said: “We can give parents general information on symptoms, but we will also put them in touch with support groups and other families, which can be a real lifeline for many people, especially if their child has a rare disorder.

“These families can feel particularly alone but we can usually find someone somewhere with the same problem, even if they’re at the other end of the country.

“A good example would be a child with a genetic deficiency. These are often unique to that individual child, but other parents with unique children will understand what this means to the family.”

Cay likens the charity to an umbrella with its spokes pointing to the different types of services and support.

She said this might not be limited to services directly relating to disability: “It’s a sad fact that having a child with a disability puts a huge strain on the relationship between the parents and the percentage of families which break up is higher for those with one or more disabled children than for those without.

“This in itself puts more strain on the remaining parent and can lead to real financial pressure, so we might suggest parents go to charities such as Relate or seek help from the Family Fund, or in extreme circumstances even talk to the Samaritans.

“These are not specifically for parents of disabled child-ren, but they are still important resources.”

Farnborough mother Nikki Smith has nothing  but praise for Contact a Family.

She has three sons aged three, five and seven who have all been diagnosed with autism — the middle one, Ian, being the most severely affected.

She said: “Ian was the first to be diagnosed and quite simply I was stunned at the time.
“I knew nothing about autism and I certainly didn’t know anyone who had an autistic child.

“There was no local support and I came across Contact a Family on the internet after a friend mentioned it to me.

“It was wonderful to be able to talk to someone who understood how I felt, who knew about the condition and who could point me in the right direction for help.

“The problem is that when your child is diagnosed they just say ‘this is what your child has got’ and ‘see you at the next appointment’, so parents are left not knowing what to do next.

“Contact a Family is fantastic for signposting in these early days and stopping people from feeling they’re running round in circles.”

Nikki’s experience with autism and Contact a Family led her on to forming the Hart and Rushmoor branch of the National Autistic Society.

She said: “I just wanted to end the isolation of parents because autistic children don’t fit in very well with other children.

“This can make going to places like mother and toddler groups quite a challenge because the mothers there don’t understand and just think your child is odd or naughty.

“All autistic children are different but I’ve learned an awful lot and I’m still learning.

“I want to pass my experience on and help families get together, so now the situation is reversed and I have people sent to me by Contact a Family.”

For families living in Surrey, Caroline Hunter is the contact point for the charity and her experience of the education system is proving particularly useful to parents.

Her 17-year-old son Kevin has autism and learning disabilities which were diagnosed late, and he also faced difficulties at school due to his challenging behaviour.

He has always attended a mainstream school, receiving extra help for his special needs, and as a result Caroline is well placed to advise on how to get the educational support for a disabled child.

Next term, Kevin is due to start attending a college of further education which can take a certain number of disabled young people.

Caroline said: “I can show people that further education can be an option for these youngsters if you have the knowledge on how to go about it.

“As well as general information and advice, I get a lot of calls about respite care and leisure activities.

“Getting access to these is not easy.

“As with so many services for the disabled, there is a general lack of professional help and funding available, so it can be a bit of an uphill struggle.

“There are a lot of hurdles to cross and it can seem like a daunting task.

“I don’t profess to be an expert but I hope I can do my bit to help.”

But there could be some light on the horizon in the form of a new two-year government initiative called Aiming High for Disabled Children.

Contact a Family has been given a contract to take part in the initiative, which is comprehensive and should provide a link between parents, councils and PCTs.

Initially, collection of data to identify need, grant allocation and the specific training of staff will build the infrastructure of the initiative.

But it is ultimately hoped that parents will have the opportunity to become actively involved with the development of services in their local area to improve the outcomes for their children.

Cay concluded: “Quite simply our aim at Contact a Family is to make the lives of families with disabled children easier, and we are looking forward to taking part in the government’s new initiative.

“This should make more funding available for disabled children’s services, with the view to improving them, and it also aims to give more help to parents in areas such as support groups and the all-important respite care.

“How well it will work is not clear as yet, as it has only just been announced, but we will be doing everything we can to make things happen.”

Cay Byford can be contacted on 01252 545345 and Caroline Hunter on 01784 460842.

Alternatively you can call the Contact a Family free helpline on 0808 808 3555 or visit www.cafamily.org.uk.