This is parenting at the extreme believe me but needs must. As tired as I am I can’t give up. I have no choice but to continue to help my children get their health back and to reintegrate them back into education.
It’s good to read that people are discussing illegal exclusions at long last. The practice of unlawfuly excluding disabled children because of difficult behaviour is attrocious. However, I am disappointed that people are only looking at illegal exclusions. I mean it isn’t just excluded children that are missing an education but children who refuse to go to school. Unfortunately it seems that their plight doesn’t register with many people. I don’t know why this is. Perhaps they think its due to poor parenting or that the child is a teenage tearaway or that they are ill and a bit of therapy can soon get them back. The point is self exclusion hardly compares to the scandal of a school illegally excluding disabled children does it?
And yet it should. School refusal is traumatic and life changing and the reasons for it are comparable to the reasons behind illegal exclusions. Lack of knowledge about disability, poor communication and insufficient resources to support a child are some that I can think of. Certainly this is what I experienced when my autistic son became unwell and dropped out of school. The school’s inability to understand autism and their failure to listen to our concerns about our son’s development led to a decline in his health. We tried hard to help him but even we could not imagine just how terrible things would get.
When our son became ill one week in February 2009, it was sudden and dramatic. Almost overnight he become so unwell that he regressed to an inner world where the only thing he could do was to watch Chuggington all day. He couldn’t leave the house, he could barely communicate and when he did momentarily escape his world of silence it was to plead to die. I cannot tell you what it is like to see your 10 year old child suffering like this and I cannot tell you how guilty I felt that I hadn’t done enough to protect him.
If that wasn’t enough I then had to deal with professionals who blamed me. I challenged them of course and argued more should have been done to prevent my son becoming unwell but they refused to accept this and argued that they could only respond to obvious behaviours in the classroom. What do they mean by obvious behaviours? Destructive behaviour that makes it difficult for teachers or for other children?
I found this response disappointing to say the least. You can’t always judge a child by their outward behaviour. Take my son for instance. He has learnt to mask his autistic behaviour whilst at school but lets go the moment he steps out of the school gates and later on at home. As he progressed through junior school (mainstream) his behaviour became more and more challenging at home and yet no-one would listen to our concerns. Because school could not see this behaviour they wouldn’t accept it was linked to school and blamed it on our parenting instead. Not surprisingly key symptoms were missed and my son ended up out of school.
This is almost an exact opposite of the experiences of the families in the article who report that their child is being illegally excluded for unmanageable behaviour in school. Unlike these families, my child did not exhibit difficult behaviour (or so I was told) and was not illegally excluded but still he ended up out of education due to ill health brought on by a lack of support. Not responding to a ’masker’ like my son is as damaging as excluding a child for so called unmanageable behaviour in the classroom.
And the impact of this is terrible. I know I’ve documented it on here many a time but I will say it again. To see your child unwell and out of school, to be told by professionals that it’s your fault, to give up work to become a full time carer was so stressful that I was close to having a breakdown. I felt betrayed by a system that is supposed to nurture children and angry that my family was being denied a life that other families take for granted. Just because my son has autism doesn’t mean he should suffer mental health problems and end up out of school.
Fortunately we dragged ourselves through this hellhole and four years later my son’s life has improved a lot, largely thanks to our continued love and support of him. (And yes I am going to shout out and take credit for his rehabilitation because it was us that did it, noone else.) He is also now in a special school that has the understanding of autism and the flexibility to accommodate him which has been important in helping him to integrate back into education, albeit part time. Unfortunately we are now facing similar difficulties with our aspergers daughter who can no longer manage mainstream school. Whilst she has avoided less severe mental health difficulties she was still left in a depressive state, unable to engage with anything to do with learning. Just like her brother before her I tried my best to get her school to recognise her difficulties and provide relevant support but it was not forthcoming and now she is at home with me. She has now missed a year of schooling (my son missed two) and once more I face the uphill struggle of rehabilitating my daughter back into education as well as continuing to help my son settle back into his school.
This is parenting at the extreme believe me but needs must. As tired as I am I can’t give up. I have no choice but to continue to help my children get their health back and to reintegrate them into education. You see there aren’t the services to help us and many parents like me are left to get on with it ourselves and whilst many of us do a brilliant job it can leave us with our own health problems. It can also lead to financial hardship and an uncertain future as we struggle to combine work and caring.
Unfortunately it seems that stories such as mine are not being heard properly. School refusal seems to be flying under the radar which is why I felt a tad frustrated when I read the Guardian article. I couldn’t help but think what about us? I don’t want to be critical about the Contact a Family report; it offers important evidence about the use of unlawful exclusions but I do want people to also consider the plight of school refusers. They don’t deserve to become unwell and drop out of school due to the lack of support. They have a right to an education too.