School Placement: Mainstream or Special?

by Colin Reilly

Choosing a school placement is likely to be an issue of particular concern for parents of students with Fragile X syndrome (FXS), especially for students who are more severely affected by the syndrome.
The Education for Persons with Special Educational Needs (EPSEN) Act 2004 is currently being enacted, and refers to the education of a child with special educational needs in an inclusive environment. The Act states that:

A child with special educational needs shall be educated in an inclusive environment with children who do not have such needs unless the nature of the degree of those needs is such that to do so would be inconsistent with
(a) the best interests of the child as determined in accordance with any assessment carried out under this Act, or
(b) the effective provision of education for children with whom the child is to be educated.

For the first time in Irish legislation, the EPSEN Act refers to the aspiration of education in an ‘inclusive’ environment, and thus presumably to the education of as many children as possible with Special Educational Needs in their local schools. However, there is still much work to be done in many primary and secondary schools to ensure that children with difficulties arising out of conditions such as Fragile X syndrome, have their needs adequately met in local mainstream schools.
Having Fragile X can lead to a range of cognitive and behavioural impairments that vary in severity. Therefore, children with FXS are likely to be educated in a range of different settings. Research from Ireland and abroad indicates that the percentage of young people with FXS attending mainstream schools decreases with age, and the percentage of those attending special schools increases with age. The reasons for the decrease in those attending mainstream schools may be related to the fact that mainstream provision is less suited to the learning needs of students with FXS as they enter secondary education.
Males with FXS tend to have an intellectual disability in the mild or moderate range, so it is likely that many males with FXS in Ireland will attend a special school/class at some time in their school life. Although some males may start in mainstream education they may transfer to more specialised provision as they progress into adolescence.
The situation for females is more complex, given the greater variability in the range of learning difficulties displayed by females with FXS, although, it is likely that some females with intellectual disabilities will attend special schools/classes.

Choosing a Special School Placement – Pros and Cons

Special schools may offer a number of advantages for students with difficulties arising out of having FXS. They are more likely to offer individualised learning programmes tailored specifically to the child’s needs, and delivered through appropriate methods. They may have specialist equipment, resources and teachers, and smaller class sizes which may suit children with FXS who have difficulties with noise levels and social anxiety. They are likely to focus on personal as opposed to norm-referenced levels of achievement. They are likely to experience less anxiety associated with ‘tests’ and pressure to get things done in a special school.

However, attending a special school may lead to exclusion from a child’s natural peer group and this may present risks to the child’s future membership and participation in society. Special schools are segregated from mainstream education, and may not offer the same opportunities for social development. Students may have to travel long distances by bus to get to the special school, due to the fact that there are a smaller number of special schools in a region compared to mainstream schools. Special classes may seem like an ideal compromise for those who find mainstream classes too challenging but who do not want to go to special schools. However, the level of integration with mainstream peers may be minimal, and being on the same site as mainstream peers may not mean that there is a lot of contact with similarly aged peers.

Schools/Classes for Children with Autism

Up to a third of young males with FXS will meet the criteria for a diagnosis of autistic spectrum disorder, so some students with FXS may be placed in classes or schools for those on the autistic spectrum. Many children with FXS may do well in educational settings that are similar to those designed for children with autism or other communicative disorders. However, children with Fragile X may have strong verbal imitation skills and this means they will benefit from strong language role models which may not be available in classes for children with moderate intellectual disability, communication disorders or autism.

Some parents of students with FXS support the benefit of intensive behavioural intervention such as Applied Behavioural Analysis (ABA). However, a strict ABA approach may need modifications for children with Fragile X, as ABA-type approaches fail to take into consideration the learning style of individuals with FXS.

Mainstream Schools – Pros and Cons

The passing of the EPSEN Act (2004) will mean that more and more students with special educational needs arising from conditions such as FXS are likely to be educated in local mainstream education providers in the Ireland. There are clearly some advantages if children with Fragile X attend local mainstream education providers. Many children with Fragile X demonstrate strong verbal and behavioural imitation skills, and because of this placement in a mainstream setting may be desirable. Being educated in a local mainstream provider may allow a child with Fragile X a greater opportunity for participation in their local community. Students with Fragile X may have the opportunity to form friendships in their local community and have more engagement with extracurricular activities if they attend local mainstream schools.

However, there are also likely to be difficulties for some students with FXS who attend mainstream schools. Many students with Fragile X are likely to experience difficulties with the mainstream curriculum quite quickly. It may that while they can participate in some of the activities in the mainstream school, they will find it much more difficult as the curriculum begins to focus on more abstract topics in Mathematics and other subjects in the middle and senior primary years. Research also suggests than that children with FXS are more likely to be the victims of bullying behaviours in mainstream schools.

Choosing a School for Students with Fragile X Syndrome

It would be wrong to see choice of school simply in terms of special versus mainstream. The nature of educational provision for students with special educational needs can vary widely in both settings.

It is important that parents of children with FXS have choice, and take the opportunity to evaluate the merits of as many settings as possible. Visiting a number of schools, both special and mainstream, is important in any decision-making process. Canvassing the views of other parents who have children with FXS or other special educational needs may also be informative.

In some areas of the country choice of provision may be limited but it is vital that parents weigh up the cons of various settings and make an informed choice. It is also important that the child’s needs are regularly assessed to ensure that their current education setting is meeting their needs. A school which meets a child’s needs at one point in time may not do so as the child gets older and their needs change.

Suggested Questions to Ask of Mainstream Schools when Considering Placement Options for Children with Special Educational Needs arising out of Fragile X Syndrome:

  1. Does the school have a policy on special educational needs indicating support for the inclusion of children with such needs?
  2. Does the school have other children enrolled with special educational needs and what is the nature of these needs?
  3. Are there suitably qualified special education teachers working in the school supporting the children with special educational needs?
  4. Are there any Special Needs Assistants (SNAs) currently employed in the school?
  5. Is the curriculum differentiated/adapted for students who need it?
  6. How is the provision of learning support/resource teaching organised in the school (e.g. withdrawal groups, one-to-one support, in-class provision)?
  7. Are visual aids and other multi-sensory methods used where possible?
  8. Are independence and life-skills taught?
  9. Is the use of a home-school diary recommended?
  10. Is daily instruction in literacy skills provided for students with difficulties in this area?
  11. Does the school offer the Junior Certificate Schools Programme (JCSP) and the Leaving Certificate Applied (LCA) programme? (for secondary school)
  12. Who is the Special Educational Needs Organiser (SENO) attached to the school?
  13. What professional reports does the school require from the parents?
  14. What input/level of involvement does the school want from parents?
  15. Do schools prepare IEPs (Individual Education Plans) for students with special educational needs/learning disabilities and if so how often is the IEP prepared and reviewed?
  16. Is there easy access to computers for students with special educational needs/ learning disabilities?
  17. What opportunities exist for the student’s involvement in extra-curricular activities at the school?
  18. Does the school liaise with feeder primary schools to ensure that they have a good understanding of the needs of prospective students with special educational needs/learning disabilities? (for secondary school)
  19. Is the school amenable to visits from educational professionals who are knowledgeable about the needs of children FXS?
  20. Will the school make every effort to find out about the educational and behavioural implications of FXS?