Helping your child with Neurofibromatosis Type I (NF 1)

About Neurofibromatosis type I NF 1

Neurofibromatosis type I (also known as NF1) is a genetic neurological disorder that can affect the brain, spinal cord, nerves and skin. Tumors, 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 :

  • perception
  • executive functioning
  • attention

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
  • Math deficits
  • Motor deficits
  • Spatial deficit
  • Asperger's Syndrome/ASD

Speech, language and communication difficulties in 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.

Helping your child with NF1

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.

NETwork Interventions targets 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.

Did you know?

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.

The next steps...

Contact us today to find out how NETwork is helping families and schools like yours.  For more information and resources please get in touch with us.

"Our son was diagnosed with Asperger’s aged 7; NETwork Interventions spent a day observing him at school and at home and quickly identified the skills he was lacking – skill deficits that we - and others working with our son - had not picked up on. NETwork Interventions trained us to help our son learn those missing skills. The results have been remarkable – he no longer cries about going to school, his concentration and behaviour are much better and he is far less likely to alienate others by the things he says. Thank you."
Parent in Surrey

"It is always a pleasure talking to Lu and Shelley - we think they are superstars!"
C & C, Ottawa

"We started an informal intervention for our 18 month old last week, Zack. Lu came for an observation around a month ago. This was followed by Shelley spending two days with our family last week. Our 18 month old had three signs and plenty of motivation and social intent, but no requests for items or people. He had a few unintelligible requests for activities and just sounds or unintelligible words for when he labels things. We have done our research. As professionals in the field of child development and with ASD and ADHD in our extended family, we know that it is better to act earlier rather than later. We didn’t want a heavy or burdensome programme for reasons of time, of finance and also of emotion. Admitting there may be a problem is actually very difficult. Last week was extremely draining emotionally in this capacity. We know that prevention is necessary as there is no firm cure and we can’t take the risk of not intervening and waiting another six months as our GP and Paediatrician told us. Shelley came to the farm with us, came swimming with us, to the park and to granny and grandpa’s home with us. She did day to day life with us such as bath time and bed time. The first day Shelley watched what life was like for me, balancing home, children, marriage and work. Life is hectic. The second day we swapped roles and she put recommendations in acting as I would and then supported me to implement it. She is coming back on Thursday to see how we are getting on and she is returning with a new schedule for me after going away to analyse it these last few days. We are absolutely thrilled with Zack’s progress already. His Gymboree teachers commented on his language ‘explosion’. His aunty, who does not know that we are running this intervention, commented on how much Zack is talking this week. I am confident that within a few months, Zack will not have a spiky developmental profile and it looks as though he will have even more skills than his peers at this rate. This is fun and I am so grateful to Shelley, Lu and Ruth who, together, have created the ‘perfect programme’ for us."
Luke, Louise, Lyndsay and Zack, Surrey, England

"This week I have been feeling very defeated with my son changing campuses at school. At the end of my call with Shelley I was filled with hope again. That is why I love our calls. Not simply because of the work with my son, but because Shelley always helps me to see a way forward. "
Gem, Brisbane

"I have had previous counselling for over two years but left because of no progress. I am finding the experience with Liz different in a very positive way. After just four sessions I am seeing great progress."
M, London

"The observation and assessment period that NETwork complete at the beginning is difficult to understand at the outset, but it turns out that it is an intricate process that [does] indeed find the issues to work on and subsequently address and resolve."
Mum, Quebec

"Dillan had significant behavioural issues and received a very late diagnosis of NVLD when he was 9 years old. This diagnosis did little to help our family. Louise quickly and efficiently set up a programme for our teenage son which rapidly identified his strengths and weaknesses. Shelley taught us and his teachers how to best address these, including language deficits which had previously remained unrecognised, Louise’s team worked within our budget, working hours and extensive travel commitments, working closely with school and our local authority to ensure everybody was on board and funding accessed. At times it felt as though Louise was coordinating a small army. Additional support of parent-counselling through Louise’s team proved invaluable, even though we were originally a little sceptical. It most likely made the difference between success and failure in our ability as parents to sustain a positive family unit whilst implementing the programme. We worked with NETwork Interventions for just under one year."
Dr Edwards, North London

"We would like to say a massive thank you for your hard work during the 2 day assessment. We are so grateful and highly impressed with your level of knowledge, confidence, professionalism as well as the kindness and respect shown to our family. Now, we really believe there is light at the end of the tunnel."
Monica, UK

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