Help for Parents of children starting school
When Shanley moved from nursery into Primary School we made sure the school were fully aware of his condition and how best to approach it.

A Raised Board for placing on a desk was provided for the school and one for at home for homework. A raised board makes it easier for him to see and write he work out. A hat with a light on. the light shines from the back of his head so it does not shine in his eyes.

A CCTV type thing was given to the school which when his work was placed under the unit would enlarge the print onto a screen enabling him to see it more easily.

As this is a rare condition, 1 in 17,000 children are born with this condition in the UK each year. Not alot is known by the doctors so most information can be obtained through American Websites.

There is a lot of prejudice regarding this condition in the media. The media, films and books portray the people with the condition as being 'Evil' or 'Freaks'. This is not helping. We noticed this prejudice more when Shanley started high school. The other children have been down right nasty to him. He comes home very distressed sometimes and it is heartbreaking to see. We need to educate people.

People stare at us in the street, it would be better if they came over and asked us why my son wears dark glasses and has such blonde hair.

Shanley has been in the local press and Granada Television regarding this hatred towards his condition but it has not helped much.

Quite a few children with this condition are Statemented at school in order for the school to provide the help and equipment they need to move through school smoothly. Shanley has a Statement. We found getting Shanley statemented fairly easy as he has also got learning difficulties, lax ligaments and rotated femurs and attends a Special Needs School. The school is excellent and Shanley is doing very well.

Worksheets need to be enlarged, when viewing the TV they need to sit near the screen or the chalk boards or smart boards at school. Text needs to be enlarged on the computer.

Not all of his work is enlarged by teachers. They do not seem to understand the difficulties he has and to be honest I am quite fed up with trying to tell them. My husband bought on E Bay a photocopier so we now enlarge his work at home. Bit of a drastic step, but it works for us.

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