My Child Has A Diagnosis
Neurofibromatosis type I (also known as NF1) is a genetic neurological disorder that can affect the brain, spinal cord, nerves and skin. Tumours, or neurofibromas, grow along the body's nerves on or underneath the skin. Scientists have classified NF into two distinct types: neurofibromatosis type 1 (NF1) and NF2. NF1, formerly known as von Recklinghausen's NF, is the more common of the types, occurring in approximately 1 in 4,000 births.
Neurofibromatosis type I (NF 1) is defined as a neurobehavioural developmental disorder. The condition typically leads to developmental abnormalities in the form of physical, intellectual, emotional and behavioural problems. These include:
Cognitive and learning disabilities. These cognitive problems have been shown to be present in approximately 80% of children with NF-1 and have significant effects on their schooling and everyday life unless treated.
The most common cognitive problems are in the areas of :
Disorders arising from NF1 are typically:
Attention deficit hyperactivity disorder in approximately 38% of children with NF-1.
Speech and language delays in approximately 68% of preschool children with NF1
Language and communication skills are an integral part of life, enabling a child to form meaningful relationships, and to express needs, wants and emotions. Language skills are also key to learning well in the classroom.
Children with a diagnosis of NF1 can have a range of language difficulties. A child could have a mild speech impairment through to difficulty pronouncing words clearly or they may not be able to talk at all. Most importantly, they often have a very difficult time using their language appropriately in a social context. They may find it difficult to read ‘hidden’ cues, such as facial expressions and body language. Due to this, they may be isolated from their peers due to interrupting, not ‘getting’ the joke, or not responding to others when they speak to them.
We realise just how devastating receiving a diagnosis of NF1 can be. The prognosis, however, does not have to be all doom and gloom. The faster we intervene, the better chances your child and your family have to thrive.
Our partners at NETwork Interventions target language, learning and behaviour, rather than dealing with generic definitions of conditions. This means that our focus is on your child’s individual needs and then equipping you and them with the skills they need to thrive.
In the case of NF1, language, communication and behaviour are often a significant part of the underlying problem.
NETwork Interventions specialises in Verbal Behaviour and has years of experience helping children with NF1 learn new communication, social and language skills and replace problem behaviours with healthy, age appropriate behaviour patterns. This can include preventing the development of further anxieties and shyness, teaching socialisation skills and enabling your child to communicate more freely and express themselves with greater confidence.
Our starting point is to undertake a thorough assessment of your child to enable us to pinpoint the exact nature of the deficits. The process then involves us providing you with a comprehensive report outlining our proposed strategy for helping your child. This includes a realistic and honest appraisal of what we think your child can achieve, and the costs and time scales involved in getting there.
Most families of children with NF1 are diagnosed at such a young age that it is possible to close the gap on speech and language, academic, social and behavioural struggles. It is possible to keep this gap closed. The cognitive side of the problems associated with NF1 have been shown to be stable into adulthood and do not get worse unlike some of the other physical symptoms of NF-1. This is fantastic news for our families who come to us.
With the right intervention, children with a diagnosis of NF1 can go on to integrate into school, attend higher education, and much more. Each child, and each family, we meet has the capacity to reach their unique potential.