A Conversation with Parents of Disabled Children
By Sharon Smith
As my daughter, who has Down syndrome, approached secondary school, I was keen to take time to explore my views on inclusion but also to try to find out what influenced my hopes and expectations for her education. As a result, I returned to study and undertook an Education Studies degree at the University of Winchester, following the Special and Inclusive education pathway. Fast forward eight years, my daughter has finished her first year at college and I am still exploring ideas relating to education and inclusion, but now it is through a doctoral research inquiry.
Over the last year, I have been in conversation with seven other parents of Disabled children, in which we have discussed parenting a Disabled child, experiences of educational inclusion and exclusion and their hopes for their child’s education. The aim of the research was to recognise tensions, contradictions, messiness, and complexity when discussing inclusive education, rather than necessarily being able to find a neat solution.
One of the clear aspects that is evident from this inquiry is the emotional demands placed on parents when attempting to secure an inclusive education for their child. There is an ‘emotional rollercoaster’ that has a wider impact on the whole family and also the parents’ mental health and their ability to maintain meaningful employment themselves. One parent described how they move ‘from these extreme highs when, you know, your child achieves something to these extreme lows when you have to sit down and detail, you know, all the things that they’re not good at and the things they can’t do and the things that they do wrong and the problems they have’.
“Hideous process fighting for your own child”
SEND processes and bureaucracy are particularly challenging for parents, with reports not being provided in advance of meetings, recommendations lacking specificity, emails and phone calls going unanswered, lack of attendance from key professionals, and poor or even illegal practice from local authorities. One parent described a sense that professionals follow generally follow protocol, but when it comes to SEN it ‘doesn’t matter’ what the law states. They described an opaque and hostile process that many parents find difficult to challenge, leaving them feeling powerless.
Parents also described teachers who claim to have no time to differentiate work, who ask children to repeat the same work that they are already struggling with, rather than find new ways to teach the content, who are rigid in the order the curriculum is followed, rather than building on topics their child enjoys and who rely on textbook descriptions about a diagnosis, rather than getting to know the child stood in front of them.
As a result many of the parents involved in this inquiry felt it necessary to become familiar with legislation so that they can ‘throw law around’. One of the parents described how it was ‘like doing a degree’ given the level of intensity and depth of research that is required to understand the complex system they are having to engage within. However, this was not the type of relationship that they wanted to have with either the school or the local authority.
“The people around him, really care about him, really want to make it work, really work very hard”
The parents involved in the research inquiry also provided examples of when positive inclusive practice had taken place and what made a difference – frequently it was individuals who were wanting to ‘make it work’ and therefore were willing to go ‘above and beyond’ and who would take their child under their wing. One parent described her son’s inclusion in a school nativity play, which was facilitated by a teacher who incorporated her son’s interest in babies and things that dangle, and she cast him as Joseph, holding a baby and a dangly star. The mother described how the teacher put her faith in her son and found a way for him to be able to participate fully in the school play.
Relationships with school leaders and teachers were of vital importance. Indeed, often when inclusion started to break down it was because of a change in school leadership or a key member of staff leaving, or at a transition stage, for example the move from Key Stage One to Key Stage Two, where education becomes more demanding, and expectations are raised. Inclusion is incredibly fragile and is currently reliant on the willingness of the individuals involved.
“Inclusive education can be different things to different pupils and different teachers. It needs to be individualised
Through our conversations, the parents involved in this inquiry identified a range of factors that are needed to encourage more inclusive relationships, namely:
- Professionals with a ‘can-do’ attitude.
- Timely and detailed communication: so that families can feel informed about what their child is doing in school, their progress and how they are being included, and so that families can discuss
their concerns or contribute their knowledge about their child. Time needs to be spent discussing how
best to communicate with families, rather than assuming a one-size-fits-all approach.
- Whole school community relationships: headteachers, teachers, teaching assistants, children and
parents of other children in the school all need to work together to make inclusion happen. Everyone
has a role to play.
- Flexibility within the curriculum, teaching approaches and the pace of lessons.
- Being a valued member of the school community, finding ways to ensure Disabled children are educated with their peers, that support is put in place to support friendships to flourish and that children are included in all school activities including trips, extra-curricular clubs, sporting events and school performances in a meaningful way.
- A recognition of the child’s strengths and interests.
- Professionals who understand and meet their statutory duties.
Whilst recognising that structural issues such as education policy, national curriculum, accountability measures and funding remain problematic for the inclusion of Disabled children within education, these experiences demonstrate that often it is the human relationships within the setting that can shape the experiences that Disabled children and their parents have. It is possible to be creative and find ways to include children in a meaningful way despite the systemic barriers to inclusion that might exist. We all have a responsibility to work together to make this happen.