Coping with a special needs child
BRINGING up a child can test any parent's patience to the very limit, and when that child has learning difficulties that task can become even harder.
For those parents it's important to know that they're not alone, and that help and support is out there for them and their children.
This can come from a range of professional bodies, but equally important is the understanding of family and friends.
Denise Bland's seven-year-old son Adam is autistic, and has also recently been diagnosed with Attention Deficit Hyperactivity Disorder (ADHD).
"Between 16 and 18 months old Adam had a fixation with laying on the floor for ages and running train wheels right against his eyes," Denise said.
"His speech also regressed at about 14 months but I was told that can be normal for boys.
"He went to Brookdale day nursery in Hala at about 18 months, and they could see the differences between him and the other children.
"He would turn his back and not interact with others and had poor language."
When eye and hearing tests proved normal, Adam was referred to Longlands child development centre to see a consultant community paediatrician.
Adam was finally diagnosed with autism when he was three-and-a-half.
This meant the specialised learning support he needed could be started at an early age, and he was given a full statement of special educational needs.
Now settled at Bowerham Primary School, Adam is making progress thanks to the help he receives, which includes speech therapy.
"The school has been amazing from day one and Adam has come on in leaps and bounds; he has so many friends now, and there's a complete difference in him and that's through all the hard work from people," Denise said.
"Over the years he has got a lot better but we have had to work extremely hard, and there's still a lot more to be done.
"His speech has been brought up to his age, but from year to year we never quite know what the next hurdle is going to be."
To help families, health visitors and school nurses undertake a programme of health surveillance and screening in order to detect problems early.
They can give specific help and advice on matters affecting health and well-being such as managing behaviour, nutrition and eating problems, bed wetting, benefits and a range of other issues parents face.
They can also put parents in touch with targeted services, support groups and parents who have similar challenges to face.
North Lancashire Teaching Primary Care Trust also offers a range of targeted services for children with additional needs including speech and language therapy, paediatric learning disability nursing, occupational therapy and physiotherapy.
With help coming from a range of sources, from GPs, health visitors and speech therapists to support groups, teachers and other parents, Denise has been able to rely on a network of support.
"I felt very isolated when Adam was first diagnosed," she said. "It was a shock, and you need to know there's support out there, because it took me a while to get my head around it.
"It has been incredibly hard but because of the support I have had I have been able to cope."
Denise, of Lancaster, now hopes Adam can continue to progress as he heads towards adulthood.
"Even though your child is autistic it doesn't mean they can't lead a happy and fulfilling life, and through the help that Adam has received he has come on in leaps and bounds," she said.
"Adam will learn to cope with his disability and learn to do things in his own way, and hopefully as he gets older it will get less and less, because he will learn coping and life skills.
"I see a great future for Adam in whatever field he wants to be in, because he is so intelligent in some areas."
Maria Man-ton also stresses the importance of the help she was given in her son Joseph's early years.
Joseph was diagnosed with Williams syndrome when he was five-and-a-half months old. The rare genetic condition causes medical and developmental problems.
"He was born with severe feeding difficulties which affected his speech and development," Maria said. "He wouldn't allow anything near his lips or in his mouth, and we had to gradually introduce things.
"I would have been lost without the support I got. Your natural instinct as a mother is wanting to feed your child, but I was reassured that it would take time.
"It was a steep learning curve for me and I would have gone under without that help."
Fortunately, Joseph's speech has not been seriously affected.
"He can communicate his needs very well, and he expresses himself very well," said Maria, of Heysham, who also has two other young children.
"I had read how good speech was in children with Williams and that they can go into mainstream schools, so when his speech didn't come on in nursery I was a bit flummoxed.
"It was suggested to me that he went to a special school and when I looked around the Loyne I knew he would love it there.
"It initially worried me that a lot of the children didn't have speech for various reasons and that it might hold him back, but because there are a lot of adults that talk to him all the time his speech has actually moved faster than it did at nursery."
Now eight, Joseph's progress has been closely monitored.
"The school has been wonderful," Maria said. "Once he started there he could receive speech therapy and regular support in school, and he had targets to reach.
"He began to make quite a few leaps, and was working very much to his strengths and developing them.
"It was the most wonderful sensation to see his strengths recognised; they are small steps but it gives you such euphoria.
"We have never looked back. We worry but at the same time we feel very blessed because he is a genuinely special child.
"It can be hard work because he needs constant monitoring but he is a joy."
Schooling is an important factor in any child's upbringing, and for those with learning difficulties, it can be vital.
The way in which teachers and parents assist the development of children with special educational needs cannot be under-estimated, according to Lindsey Winterton, a senior specialist advisory teacher for early years at the University of Cumbria.
Lindsey has carried out research which shows that a family focused approach, where a teacher works in close partnership with the child's parents, is the most effective way to improve their early development.
"True partnership working can positively influence parents' skills and abilities to encourage their child's development, which in turn can also lead to them developing more positive perceptions of their child's abilities and potential," she said.
At the Loyne School, which caters for children aged two to 19 with a wide range of learning difficulties, teachers know the importance of giving the right support to their pupils and parents.
Deputy head Barbara Bradbury said: "Our curriculum at the Loyne School is firmly based on improving communication."
This includes training in sign language for parents and staff and for other schools in the district.
The school also gives a lot of help to mainstream schools with specially designed support packs for the teachers, which are aimed at targeting specific youngsters.
The school set up a weekly parents' group last year which has proved popular, and gives parents the opportunity to share their problems and support each other.
"We have good communication between the school and parents," teaching assistant Fiona Gemson said.
"It's important to reach parents with very young children who have just been diagnosed, so they can find out what's out there and can get information from parents of older children."
Caroline Ward, one of the leaders of the parent group, has a seven-year-old son, Sean, with Down's syndrome, who attends the Loyne School.
"We have all had different experiences, so we can share that with each other," she said. "It can be isolating, but people don't need to be on their own. It's simple things like the tiny steps of progress the children make in their lives which we can all celebrate, and also the bad experiences – to be able to talk to another parent can be such a relief."
The group, which meets at the Loyne on a drop-in basis from 9.30am on Thursdays, is open to anybody working with or caring for any child with any kind of disability.
It gives parents the chance to support each other and offer friendly advice and information.
"It means a lot to a lot of people," Caroline said. "One mum said it gives her a reason to get up and out in the mornings."
>> Useful contacts
The National Autistic Society: 020 7833 2299 or www.nas.org.uk
ADHD Information Services: 020 8952 2800 or www.addiss.co.uk
The Asperger's Syndrome Foundation: www.aspergerfoundation.org.uk
Down's Syndrome Association: 0845 230 0372 or www.downs-syndrome.org.uk
The Williams Syndrome Foundation: 01732 365152 or www.williams-syndrome.org.uk
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Friday 10 February 2012
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