For the last nineteen months, my daughter who has both Asperger’s Syndrome and Epilepsy has been studying at a top English University.
Her journey into Higher Education, as someone with invisible disabilities, was hard. It was an obstacle course of bullying (by teachers and peers), flawed diagnoses and a constant self-esteem bashing so that when she finally started her degree, my wife and I indulged in a joint sigh of relief that the system had been thwarted and she was – one academic year late- finally receiving the education she deserved.
The reprieve however was brief and within a few days of having delivered her to academe we realised that that this was just the first day, as they say, of the rest of our lives.
The problem is that you never really totally dispatch your offspring and ‘normal’ parental anxiety is heightened when your progeny is susceptible to random seizures and Aspergic melt-downs (outbursts) in the students’ kitchen because a neighbour has used her sandwich maker, without permission, as a wok.
Although the university administrators are well meaning, its pastoral care initiatives remain incomplete. When for example, my daughter flags up the continuing lack of cushioning near her bed (to protect her during night time seizures) the team begins a process of remedy, but nobody finishes it. This is just one example of that old cliché about no ‘joined-up thinking.’ A problem is categorised, processed and then ‘parked’ unless something truly awful happens at which point the crisis managers (and PR people) step in.
You already know how your patience is habitually challenged by organisations falling short of their promises and your suspicion that there is no complete solution is right. However, having spent several years as a coach and a self-help writer I believe that combined forms of supported self-management are the best way forwards.
Medically, self-management support is ‘When health professionals, teams and services (both within and beyond the NHS) work in ways that ensure that people with long term conditions have the knowledge, skills, confidence and support they need to manage their condition(s) effectively and live well in their everyday life’1 . It has been a stern challenge to coerce my daughter, who at twenty years old is officially an adult, to sign up to an oversubscribed university counselling service but with the support of Benenden Healthcare, she has found therapy off campus. This has empowered her to select the counsellor rather than being told ‘this is who you will be seeing’. Her situation is not perfect, but has improved and is a step towards future independent living.
My wife and I attend a monthly parent group where we can share feelings with other parents with similar concerns. When you have a child with extra challenges you often feel judged and sneered at but we have learned that we do not need to suffer alone and we too are becoming empowered (and therefore a bit happier) as we lend an ear and give advice to parents of younger children who appear to marvel at how far we have come. Although this does not actually cure anything, the act of connecting can nudge despair towards hope and ultimately this is what keeps us all going.
Renato Fantoni 2016
(The Health Foundation http://personcentredcare.health.org.uk/person-centred-care/self-management-support/what-self-management-support).