Funny Lumps Activities
Funny Lumps supports children with Neurofibromatosis and their families living in Scotland.
Neurofibromatosis (Nf) is the most common but least known genetic condition affecting 1:3000 births. It can cause problems with multiple systems in the human body. Nervous system, skin, eyes, skeleton, endocrine and circulatory systems. Brain tumours, dermal tumours, optic glioma, scoliosis, pseudoarthrosis (usually resulting in amputation), large disfiguring plexiform tumours and kidney problems are among some.
However, the most common and challenging complications can be the Learning Difficulties and behavioural problems children with Nf face on a daily basis. As many as 66% of children will have some form of learning problem as many as 1:4 will display autistic tendencies.
Many will experience development phonological dyslexia. They will find it difficult to recognise strange words and rely on word recognition based on appearance of words and spelling causing huge problems with reading and writing.
Reading and language problems make it difficult to acquire numeracy skills and short term memory problems make it difficult to remember basic number facts.
Children with Nf can experience difficulties with:
•Short term memory
•Visual spatial skill
•Fine and gross motor skills
•Anxiety and depression are common in children with Nf
•Psychosocial: within a family the child with Nf is likely to be less competent in many skills than the sibling who does not have Nf
•Social problems are common – difficulty being accepted by other children at school and in the community
All of these problems are further compounded when the parent also has Nf and experiences learning problems. These parents find it difficult explaining to teaching staff why their child is displaying “bad behaviour” and not keeping pace with their peers.
Every child with Nf is different and at Funny Lumps we believe that each child should have a tailored prescription of information to assist the teachers in helping the child achieve their full potential.
Our Educational Advisor, who writes all our educational material, is a Chartered Teacher specialising in Nf and Autism. These materials consist of specific information sheets on the various learning difficulties a child might face. Help sheets for the teaching staff, learning support staff, nursery nurses etc. School diaries specifically designed for children who have both learning and medical needs, visual timetables, behaviour tips, booklets for the parents on how best to help their child at school, booklets for the child on having Nf and a booklet which gives parents the chance to discuss how their child is feeling about the challenges faced on a daily basis.
Our first point of contact is a home visit to meet with the family where they feel most relaxed and find it easier to discuss the problems they are facing both at home and at school. Contact will be made with the school with a view to an initial informal meeting to discuss the child and their progress. Often the school know little or nothing of Nf and how it can affect the child and establishing a good relationship at this point can have a huge impact.
We maintain contact with both the family and the school and are happy to be involved in setting up relevant educational learning plans where necessary and thereafter attending the relevant meetings and are always available to send further info or help in any way we can.
Funny Lumps organises family events where the children can get together and realise they are not the only ones who have this condition and the rest of the family get the chance to meet others in the same situation and who understand and can support one another.
NF-1 was formerly known as von Recklinghausen disease after the researcher (Friedrich Daniel von Recklinghausen) who first documented the disorder.