Flying Under The Radar

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.

Related Posts Plugin for WordPress, Blogger...
This entry was posted in Aspergers, Autism Spectrum Disorder, Care, Girls with aspergers, Parenting, School, School Refusal, Special Educational Needs and tagged , , , , , , . Bookmark the permalink.

5 Responses to Flying Under The Radar

  1. Deb, I’m so with you on this. School refusal is far more likely in my girl’s case than exclusion is, and I’m frankly terrified as to how we would deal with it. The thing is, it can be avoided, it’s just a case of managing the behaviour and situations up front and being proactive rather than reactive. We just have to hope that we will always come across education staff who are prepared to think outside the box and the ‘norm’ and make that little effort. How do we kick up the storm about school refusal then, and make the wider community see it’s a real issue and not a ‘bad parenting’ issue? Actually I caught a minute of the This Morning bit on refusal yesterday, but I think the trouble is that the line between Special Needs children refusing and shy/phobic children refusing is a bit too blurry….. all need help, but to different extremes.

  2. Sue says:

    Hi. Wow i totally relate to this.
    My son is now 13 and has had so many issues with school. Currently he isn’t diagnosed and i have been fighting for over 3 years now for assessments.
    They even started legal proceedings against us because of his poor attendance. Just like your son school say he is perfectly fine when at school and i have tried to tell them over and over he is masking. They have seen him at home and have made remarks about his immature behaviour and how different he is at home, but still refuse to accept that it is anything other than manipulative behaviour or bad parenting.
    Recently he has started to express that he doesn’t like noisy classrooms and can’t concentrate. He asked to sit in a storeroom/cupboard to do his work in one lesson. Another he went into a different room.
    I have asked for home tutoring too but this doesn’t seem to be an option. After several weeks of non attendance again he is hopefully now being allowed to go to the Student Support Base to do some work.
    We have a CAF in place again now and i really hope things start to get better this year.
    My son has lots of sensory issues and is a literal thinker and has difficulty processing at home, so this must be a problem in school too, but is being overlooked.

    I think it might be helpful if they read this article. Would that be ok please?

    Thanks so much for sharing this.

  3. Jo Henley says:

    Thank you for this. I actually wrote a post today, asking for help. My twitter friends directed me yo you, and I can see why. How did you coax your son back to school? My son is only 5 and flat out refusing x

  4. Fiona says:

    Thanks for this. I had the same reaction to the Contact A Family report. I know the report specifically asked about exclusions, but it’s a bit like only asking who was illegally sacked and not about constructive dismissal. I’m coming to this from the perspective of someone who actively chose to home educate my son from the start, but I do have quiet a lot of contact with parents who felt they had no choice but to ask for the child to be taken off the school roll (ie to home educate) because of the child’s refusal to go to school. Once the child is off the school roll, the council has no further responsibility.

  5. S says:

    Hi there,

    I completely understand what you’re saying. Have been going through school refusal with my 13 yr old ASD son for over a year. It’s just horrible. Same as you, behaviour was always ok in school and it all came out at home. No support to try to help him back to school and no education for him. I find it frustrating that a child who is excluded will be educated by the LA (at home or whatever), but the LA are not interested in continuing to educate a child who is refusing to go to school!

    Seems there was something on school refusal/phobia on This Morning today on itv. And I also saw something in a newspaper today saying that 1 in 5 children are affected by school phobia.

    Are you aware of this forum: A good place to share stories and for advice.


Leave a Reply

Your email address will not be published. Required fields are marked *


You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>