How Parents’ Voices can Shape SEN Career Development
Deep breath: I am going there. I am going to venture into a minefield, a minefield encircling special educational needs and disabilities (SEND) or, as I like to frame it, additional needs.
Why the metaphor of a minefield? What hidden explosives exist for people, especially parents, or for those who comment on or intervene in this world?
As a parent of children with additional needs, a former teacher and careers consultant working in the field of additional needs, and now an entrepreneur, I know that the explosions come in a virtual, linguistic and physical sense.
Even a simple conversation about SEND can be difficult to navigate. Society is learning about social models of disability, which means that people are more likely now to say ‘wheelchair user’, not ‘wheelchair bound’. We refer to someone ‘with Downs Syndrome’ whilst also using ‘Autistic’. because we have taken note of the language preference of people with those conditions. We are learning to think about neurodivergence and neurodiversity and their important semantic differences. We amplify our voices and speak about the value offered to us all by people who have a difference. We tread delicately. Emotions run high.
Emotions especially run high for parents of children with SEND. Forced to fight every inch of the way across the additional needs minefield for access to additional support for, or recognition of their child’s particular needs, they are an emotionally charged and exhausted demographic, always ready for their way to be blocked and bracing for devastating impact the moment they put their heads above the parapet.
When approaching, over 10 years ago, the special educational needs coordinator (SENCO) to have a conversation about the possibility that my child may have what I termed then as ‘an Asperger’s brain’, a completely unexpected mine blew up in front of me. Apparently, my daughter’s sense of humour precluded her from that condition. I was therefore wrong. Over-sensitive. Dismissed. There began a lonely 3-year journey through the neurodivergent minefield, with a diagnosis on the other side. I wish I could consign that particular experience to the dustbin of history, but at the far more recent launch of Daniel Aherne’s excellent book ‘A Pocket Guide to Neurodiversity’, I heard upsettingly similar stories from parents starting that journey now.
It should go without saying that professionals should absolutely trust in the judgement of parents. They are experts in their own children. If parents are telling us that something is different or deficient, we need to listen and acknowledge the authenticity of their voice.
In the field of career and skill development, we need parent and carer voices to help us prioritise the discovery and promotion of the experiences, interests, strengths and intentions of the young person concerned. We must adopt a holistic approach, which considers the influencers around that young person so that we can build an effective profile and begin to understand in what ways that young person is able to contribute to their community, and in what ways they will gain from that activity.
Professionals working with young people who have a special educational need or disability know that there is value in making that contribution for all people and we use the term ‘working’ for that because it describes any level of engagement in any planned activity which enables the child to identify, learn and/or use a skill for the purpose of achieving some kind of positive outcome.
That outcome may not be a financial reward. It can be an increase in awareness, an improvement in independent skill or the ability to communicate more effectively. Almost everyone gains a tremendous amount from working, not least the satisfaction of doing something to the best of our ability. I was fortunate to engage, pre-pandemic, in strategic and delivery work led by the Government’s Careers and Enterprise Company in partnership with the Gatsby Foundation to enable this understanding to be communicated across the country to employers and parents, and we have continued this work at Vitruvia, designing and delivering differentiated skills programmes that can be accessed by young people and adults with additional needs.
The challenge is overwhelming: only half of disabled people are in work* and just 22% of Autistic adults are in any kind of work*. Opportunities for people with additional needs to fulfil their potential outside of the home are clearly scarce. A large proportion of employers remain nervous about hiring people with disabilities.
It is important to recognise that employers are not the only group who worry about young people with additional needs entering the workplace. Many parents also feel this way, and understandably. They have spent many years shouting from the rooftops that their child needs more support. They have completed mountains of paperwork, highlighting their child's difficulties, in order to unlock funding. The system demands that parents frame their child negatively. The focus is always on the deficiency.
I have experienced this first-hand. During another tough hour of questioning by a clinical psychologist as part of the process of diagnosis for one of my children, I began to feel overwhelmed. I asked for the interview to be paused. What I wanted, badly, was to speak only in positive terms about my incredible child, just for a few minutes. This was allowed and, in the lengthy report that followed, there was one tiny paragraph which simply listed many of my child’s numerous talents and positive attributes. This meant a great deal.
Parents can resist the identification and promotion of their child’s strengths in the public sphere because that might mean that funding is stopped or support is withdrawn. They fear for their child in the workplace (another minefield), and these fears are not unreasonable. There is also the considerable psychological impact of facing the possibility that their child may become increasingly independent and therefore not need their parents in the same way. Parents can often find it is they who have become institutionalised and unable to contemplate a different future.
This makes the process of career development especially challenging because career professionals are focused on discovering strengths that have been intentionally and necessarily minimised, as well as that young person’s interests so that they can try out different jobs and roles. Engaging parents - sensitively and respectfully - in this process is vital, not least because studies repeatedly show parents have more influence in their child’s future than teachers and other professionals do. And parents are tough, committed champions of their children who know where most of the mines are hidden.
Bonus podcast
Listen to Tina Harrigan- James, Vitruvia and Jane Rexworthy, Chair of the UK Skills Partnership and Founder of Skills for Inclusion, discuss how we can all support young people with additional needs to find work.
References
https://www.autism.org.uk/what-we-do/news/new-data-on-the-autism-employment-gap
