Birmingham Conference for Parents, 2005
HemiHelp's Conference for Parents in Birmingham in 2005 drew 78 concerned parents and grandparents, from a wide Midlands catchment area.
Brain damage and stroke
The first speaker, Dr Sunny Philip, Consultant Paediatric Neurologist at the Birmingham Children’s Hospital, explained, in layman’s terms, the pre-natal stages of the development of the brain and how damage at different stages and in different areas result in the physical manifestations of hemiplegia.
He then went on to discuss the nature of stroke, the types of stroke and signs of stroke in a child. 5 out of 100,000 children per year are affected by hemiplegia, half of these have underlying medical conditions and in 10% of cases there is no identifiable cause. We were given a concise description of the various tests used to try and determine causes. These included:
- brain scans - MRI and CT
- blood tests
- echocardiograms - ultrasound scan
- lumbar puncture
Recent research and the growing awareness of hemiplegia has meant the possibility of earlier diagnosis which in turn means more instant relevant treatment can be implemented to minimise its effects.
Behavioural and emotional difficulties
The second presentation was from Annette Lawson, Consultant Clinical Psychologist at Birmingham Children’s Hospital, whose brief was the Behavioural and Emotional Difficulties in Children with Hemiplegia. She began by stating that children with medical conditions are more prone to behavioural and emotional difficulties and about 60% of children with hemiplegia have some difficulties, but it must be remembered that no two children are the same.
The perennial question: What’s normal behaviour? was answered with a list of 26 items of the type of behaviour that worries all parents of children between the ages of 2 and 4. On closer examination it was reassuring to learn that these causes for concern were all “normal” within context.
Families adapt to living with a child with hemiplegia in many different ways. The degree of adaptation depends on three main variables:
- Medical condition (including some not related to hemiplegia)
- Environmental situation
Problems are not static and psychological problems in children appear to increase as children get older. Family variables such as open, honest communication, lack of conflict, family cohesion, emotional expressiveness and family stability are predictive of the ability of the child and parents to cope with the situation.
However, changes in general, such as moving house, new siblings or new schools, can prove to be destabilizing. Parents of a child with a disability are the best therapists as they know their child much better than anyone else and they are in a position to maximise the capacity the child has in order to compensate for disadvantages and in this way the child with the most disability may be the least handicapped.
In conclusion Annette gave us her 11 Golden Rules for coping with behavioural and emotional difficulties:
- decide on your family rules
- be realistic
- stick to your rules
- have firm boundaries
- have a routine
- celebrate your child’s achievements (however small)
- ignore undesirable behaviour whenever possible
- emphasise your child’s strengths
- support your child’s weaknesses
- be a ‘good enough’ parent
- be kind to yourself
The afternoon programme commenced with a presentation by Beatrix Szeszak and Krisztina Balogh of The National Institute of Conductive Education in Birmingham.
Founded in Hungary by Dr Andras Peto, conductive education became available in the UK in the mid 1980s. conductive education, as the name suggests, is an educational approach. It is a highly structured individualised and interactive education approach and it aims to assist children and adults with motor disorders learn to overcome problems of movement so as to enable them to live more active and independent lives.
A more graphic definition of conductive education provided by Andrew Sutton is:
“Conductive education is a long-term strategy for setting an alternative communication system between mind and body in a child with a motor disorder. If the brain can’t transmit the right signals to the right muscles then the child is trained to send those signals by an alternative route. The role of the trainer or ‘conductor’ in this process is vital.”
Some important aspects of conductive education are:
- group work to develop social skills, motivation and a feeling of belonging
- daily routine to establish a framework for CE which includes many play activities
- rehabilitation system which aims to integrate children back to mainstream
education or facilitate their learning in mainstream education (this also includes educating teachers)
In order to better our understanding Beatrix and Krsztina showed us a video of the ‘conductors’ working with a young boy called Ben as he underwent his daily workout, which was performed in an environment of constant praise and encouragement. Beatrix explained that this was a brief introduction to conductive education but it was enough to leave some parents with the wish to pursue further knowledge.
Supporting successful inclusion of pupils with hemiplegia
The SEN (Special Educational Needs) and Disability Act 2001 came into effect in September 2002 and the final speaker of the day, Lucie Danyi of Brays Outreach Service, addressed this vital topic in her paper Supporting Successful Inclusion of Pupils with Hemiplegia.
Inclusion has become a buzzword in the last few years but as with all buzzwords the reality is often sadly off the mark.
What is inclusion? The Birmingham LEA Strategic Plan for Inclusion defines it as:
“The process of developing flexible systems to support the educational needs of all children and young people in their local community.”
And the Act states that the governing body of each school must make “reasonable adjustments” and work towards ensuring their schools are more accessible. Inclusion is an issue for all schools and priority should be given to the planning and developing of schools which can provide equal participation for all pupils.
All LEAs can bid for central government Access Initiative funding. This money is “ringfenced” and must be spent on adapting schools to enable the successful inclusion of pupils with Special Educational Needs.
Physical adaptations may have been made in some schools but often nothing had prepared the teachers for the inclusion of the pupils, and for some teachers it would be the first time they would have met a child with disabilities. School staff need help to understand what hemiplegia is and how it affects your child and what the individual educational and non-educational needs are.
Deciding on a school for your child is scary and has a huge impact on families. Lucie has vast experience in this area and understands full well the emotional issues and complex procedures parents have to encounter when dealing with their child’s education. Her advice was forthright:
- Don’t be shy! You know your child and what they need.
- Know the law inside and out
- You are entitled to request a Special or Mainstream placement for your child
- If you want your child statemented, tell your LEA - legally they must follow up your request
- Don’t assume staff know what hemiplegia is or understand your child’s needs or diagnosis, but training enables staff to understand the educational implications of your child’s diagnosis
- Work as partners with the professionals and share ideas, this ensures that your child is as happy and successful as possible
- Don’t be afraid to ask for adaptations and resources if your child needs them
- Enlist the help of specialised support agencies to help provide information and training
- As parents your child and their school need your active support and involvement
Lucie generously volunteered to help any parents who needed advice about dealing with LEAs in the Birmingham area.
A useful day
A general air of stimulation and enthusiasm prevailed as people exchanged contact numbers and crowded round Lucie’s table and the information boards.
The general consensus was that the broad range of topics covered had made this an extremely interesting, encouraging and useful day.