A sense of loss

Figures suggest that there are around 24,000 blind and partially-sighted children under the age of 17 in England, Scotland and Wales.(1) Half of them have no other disabilities, while the other half have additional difficulties, including profound and multiple learning difficulties and deaf/blindness.

Blindness can be caused by a multitude of rare conditions, some of them genetic, others viral. In many cases the reason is not known. Causes of visual impairment include childhood glaucoma, astigmatism, nystagmus (the uncontrollable moving of the eyes, usually from side to side), childhood cataracts, albinism and retinitis pigmentosa.

Elizabeth Cleary, acting assistant director for children’s services at the Royal National Institute of the Blind, says diagnosis of blindness is very variable depending on the condition. Sometimes a child is born blind and it is very obvious. But for others it takes longer, particularly when there are other conditions such as cerebral palsy involved.

What happens after diagnosis is similarly variable, depending on the consultant’s knowledge and what services are available locally, she says. But she stresses that the earlier services become involved the better, adding that government initiatives prioritise early involvement.

Most local authorities have support services to work with families after diagnosis. These are usually led by specially-qualified teachers, who link with early years services in helping families to support their children.

Children with additional disabilities might also have occupational therapists, physiotherapists and speech and language therapists in their team. Co-ordination and joint planning is vital where there is input from education, social services and health, says Cleary, but some authorities are better at this than others.

As the former leader of a council support team, Cleary visited families regularly, according to their level of need. “What parents usually want to know is what will happen in educational terms – even when the child is six months old,” she says. “There can be feelings of isolation because visual impairment is a rare condition, so having someone to listen is helpful.”

Almost six out of 10 children with a visual impairment are educated in mainstream schools, with only 5% attending specialist schools for blind and partially-sighted pupils.(1) A third are taught in other types of special school, such as those for pupils with learning difficulties or physical disabilities..

(1) RNIB, Educational Provision for Blind and Partially-Sighted Children in Britain in 2002, from www.rnib.org.uk

Case study
“It was all a massive, massive shock”

Jordan Woodley was eight when he started to lose his eyesight in 2000. At first the doctors thought it was tonsillitis, says mum Zena, but he was finally diagnosed with hydrocephalus, an abnormal build up of cerebrospinal fluid inside the brain. A tube in his brain had become blocked and his optic nerve had been crushed.

Within a year, Jordan had had 12 neurosurgical operations, been fitted with numerous tubes – known as shunts – to divert the fluid into other regions of the body where it can be absorbed, and lost 98% of his vision.

“It was like being hit by a tonne of bricks,” Zena says. “Once Jordan lost his sight, he became very quiet and introverted. Most friends were a bit scared and, although they were kind, when he couldn’t join in their activities they started to distance themselves.”

Zena says she was keen for Jordan and his younger brother to achieve academically and both were attending a private school. Before his illness, Jordan was top of the class. But once his difficulties began, the school reduced his hours and insisted he walk in separately and be taken home before lunch. “I had to give up work, which was a mega stress because I’m a lone parent and I had a very good job, but I couldn’t cope,” Zena explains. “It was all a massive, massive shock.”

After a few weeks, the school said Jordan had to leave and go to a school for children with disabilities. “I was in total denial. I didn’t want him to be handicapped, I wanted him to be normal,” she remembers. “Then I decided I had to find the best school for him and his needs.”

Feeling constantly worried and guilty, Zena decided to head to Exeter with her children to the West of England School for young people with little or no sight. The school, which is a registered charity and approved by the DfES, assessed Jordan and gave him a place, which the local authority agreed to pay for.

Zena, who is now a school governor, says: “I think it’s really important to find the best learning environment for each child. The great thing too is that because other children there have shunts they understand what the children can and can’t do.

“The school is marvellous. They’ve really pushed him in all ways – academically, which was my concern, but also physically. They put him forward for the Devon Youth Parliament – he’s a deputy member – and he’s also been sailing and is going to France in October. He is quite keen to do Junior Mastermind, which the school suggested, and he does acting in a drama group. He’d like to go to Oxford and become an author.

“Jordan is learning Braille and has achieved so much in such a short amount of time and coped with it in such a positive manner that it’s been marvellous. He is an inspiration.

How you can help
How to help children who have visual impairments: