The annual seminar of the Irish Fragile X Society took place on Saturday 3 February in the Arts Block of Trinity College. This year’s seminar focused on special education needs and adolescent and adult issues in relation to sexuality. Speakers invited from the United States, the UK and Ireland addressed the audience of parents and professionals on the current situation regarding special education in their respective countries. What emerged was a very interesting, if somewhat depressing, picture of just how far behind we are in Ireland in terms of legal entitlement to both assessment and appropriate education for persons with special needs.
The keynote speaker at the meeting was Dr Marcia Braden, a licensed psychologist and special education consultant from Colorado, with almost twenty years’ experience in teaching children with Fragile X. Dr Braden has published numerous articles related to educational and behavioural management strategies, techniques and interventions for Fragile X. She has also developed a reading system based on logo/brand recognition which works particularly well for Fragile X sufferers, given their aptitude for recognising symbols and icons.
In the US each state is mandated to assess children with special needs and to devise and deliver an individually appropriate education plan based on that assessment. Dr Braden discussed the educational strategies that have proven most successful in enabling Fragile X sufferers to learn in integrated classrooms.
The strategies that work best for Fragile X learners match their particular style of learning. They learn best when they are taught words in their entirety (initially with an associated image)–so called Gestalt learning–rather than the more traditional approach of teaching words by building letters. The use of images to record daily events in a journal which passes between home and school helps Fragile X persons to remember their routine.
The importance of the physical classroom environment in the learning process was also highlighted by Dr Braden. It is critical that the Fragile X student is seated close to an exit and in a seat where traffic behind them is minimal. These factors alone can relieve some behavioural problems and create the calm environment required in order for learning to proceed.
The second seminar speaker was Lynne Zwink, current chairperson of the Fragile X Society (UK) and parent of two children with Fragile X. Her ‘parent’s perspective’ was a lively and humorous tale of the educational problems she had faced with her son and daughter. Ms Zwink suggested that the school experience of girls with Fragile X can be quite different to that of boys. Girls are often less affected by Fragile X and consequently more able academically, but they can find the social implications of integration into mainstream schooling overwhelming.
Again the situation in the UK is quite different to that in Ireland because there is a legal right to an assessment for a child with developmental delays and also to the implementation of the educational recommendations issuing from that assessment.
Ms Zwink also sounded an interesting warning that integration of special-needs children into mainstream education at the expense of schools for those with moderate learning difficulties might not necessarily be a good thing.
The focus moved closer to Ireland with the talk by Deirdre Carroll of NAMHI. She outlined the appalling lack of progress in rights to education for those with an intellectual disability in this country, despite two recent landmark decisions by judges on the state’s obligation to provide an appropriate education for all its citizens, irrespective of their age.
The Department of Education and Science was ably represented by Don Mahon. Though no sweeping changes to meet the urgent educational needs of people with intellectual disability were announced, Mr Mahon did explain some of the problems facing the Department in tackling this problem, notably that of filling vacancies for qualified professionals such as psychologists. He also outlined a possible future reorganisation of departmental structures to a more devolved local set-up that may bring more rapid change in meeting the special needs of those with learning difficulties.
All present agreed that the seminar was successful in terms of informing Irish parents and professionals about proven techniques which can help them to educate their Fragile X children in a meaningful way. It only remains for the government bodies concerned to provide the education to which all Irish citizens are entitled and to build on the experience of those who have developed successful disability-specific strategies.