Rett Syndrome

About Rett Syndrome

Rett Syndrome is a disorder of the nervous system that leads to developmental reversals, especially in the areas of language and hand use. It is characterised by normal early development, followed at a later stage by loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, gait abnormalities and seizures.

This condition- which almost exclusively affects girls - is a genetic disorder, although less than 1% of recorded cases are passed from one generation to the next.

Rett Syndrome usually develops in four distinct stages:

1. Early onset usually occurs in infants between six to 18 months of age. The child may show fewer signs of eye contact and have a delay in the development of motor skills such as sitting or crawling. 
2. The rapid destructive stage usually manifests between the ages of one and four years. This may be either rapid or gradual as purposeful hand skills and language skills are lost. Some girls may also display autistic-like symptoms such as a loss of social interaction and communication skills. Slowing of head growth is more pronounced and noticeable at this stage.
3. The pseudo-stationary stage becomes apparent between the ages of two and 10 years. Although there may be an increase in motor problems and seizures at this stage, there may also be an improvement in behaviour, with less irritability, crying or autistic-like symptoms. At this stage, the individual may show more interest in their surroundings and their alertness, attention span and communication skills may improve. 
4. Late motor deterioration may last for years and is characterised amongst other symptoms by reduced mobility, muscle weakness, stiffness and curvature of the spine. However, there is no general decline in cognitive ability, communication or hand skills.

Helping your child with Rett Syndrome

Verbal Behaviour is a highly effective way of helping children with Rett Syndrome to learn language and communication skills, particularly when implemented early on.

Verbal Behaviour interventions can have dramatic results. Although not all children can progress to this degree, many children with Rett Syndrome can make great gains.

As with all language difficulties, a degeneration of communication skills may lead to feelings of isolation within social peer groups, alienation and anxiety. By teaching your child the tools to communicate effectively, feelings of frustration and isolation will be minimised. This may also help prevent your child from developing an acquired disorder such as depression, or challenging behaviour.

What results can I expect?

Many children we work with show remarkable progress in a very short space of time, achieving their potential and often exceeding expectations. A Verbal Behaviour programme, combined with other recommended therapies, can result in a number of positive outcomes for your child, including:

• Improved linguistic and communication skills : By equipping your child to express needs and wants, make her/himself understood and communicate more effectively, feelings of isolation and frustration will be dramatically reduced and your child will be happier and more motivated to interact with others.
• More socially acceptable behaviour: Challenging behaviour is often a symptom of an underlying language problem. By teaching missing language and communication skills we almost always see an improvement in behaviour.

Support for families

Over the years NETwork Interventions have linked up hundreds of parents and families across the world through our NETwork programme.
One way of doing this is our sibling network scheme for the brothers and sisters of children with learning difficulties, where younger family members can learn from each other how to cope with the difficulties of living with a sibling with a delay or struggle and share their experiences.

We also link up parents who are caring for a child with disorders such as Rett Syndrome. Knowing that there is a support network of others who are going through the same experiences can make all the difference.

Did you know?

Rett Syndrome is not a very well known disorder and wasn’t universally recognised as a medical condition until 1983. It is often misdiagnosed as Autism or Cerebral Palsy, but new diagnostic tools that include an assessment of skills and a blood test have made diagnosis more accurate.

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"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."
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"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."
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