School refusal – challenges, beaurocracy and betrayal

To those of you who know of someone whose children are not in school, please do not assume that they are truanting delinquents.  Regardless of what the papers say not all these children are truants or the result of poor parenting.  Some children may be struggling so much with their life at school that they simply stop going.

School refusal is a term used to describe pupils who refuse to attend school due to reasons such as anxiety or stress.  It is not truancy or the occasional day when your child doesn’t want to go to school but a persistent avoidance of school.  It was used to describe my son when he was first out of education in 2009 and again in 2011 when he was unable cope with school due to severe anxiety.  Since then, I have managed to expose him to his school (a special school) and even got him into classes for one week but this was too much and he has not been in since last November.  We now have a home tutor for him provided by the local authority and this is starting to lift his confidence and engage him in learning but it is a slow process.  Nevertheless, I think the home tuition service are starting to realise the extent of my son’s difficulties.  Maybe sometime soon, they will see what I can see and we can confront the question that is haunting me: is his school still right for him?

As for my daughter who has aspergers syndrome it seems she may also be going down the school refusing route.   After finding school difficult for quite a while she has now reached a point where she says she “gives up”.  These are not words you want to  hear from your child, particularly when you’ve tried so hard to get help for her, as we have done.  In hindsight, I wonder whether we should have moved her to another school but this is not an easy thing to do with an autistic child; they do not cope well with change so any change has to be carefully managed.  Furthermore where would we have moved her to?  Without a statement of special educational needs, we are restricted to the mainstream schools and in my area few (if any) of these schools can properly support pupils with aspergers syndrome, particularly those without statements.  This is why we have applied for a statement in the  hope that we can get the additional support she needs.

In the meantime we are in limbo, caring for two school refusing children whilst battling the authorities for support.  It is a stressful situation to be in.  Not only do you worry about what your children are going through and the impact that missed education will have on their future lives but you also feel torn between pressurising your child back to school and being sensitive to their needs.  It is a difficult path to negotiate.  Whilst we recognise that for my daughter her current school is not right for her, we’re aware that the longer she is out of school the harder it will become for her to return (similarly for my son). We are therefore trying to organise support for my daughter whilst gently encouraging her back.  It is difficult and things are not going well.  We managed to encourage her back into school last week but promises from the school that she would have “support in class” amounted to an assistant who was, we later discovered,  instructed to observe my daughter instead of providing actual support.  Not surprisingly, my daughter came home upset that she was ignored and now refuses to go back into school.  The whole situation is a mess and we are left feeling betrayed by a school who are clearly not sympathetic to our situation and more worryingly are not being totally honest with us.

On top of this there is also the difficulty of trying to deal with friends and acquaintences who don’t understand school refusal.  When I dare to mention (and it’s not often) that my son and daughter are not in school, I can see them giving me quizzical looks and fumbling over what to say.  You can almost hear them think “bad parents” because that is how many people have been structured to think.  I mean our government and media are on such a crusade to blame parents for everything, it’s not surprising that some people assume it’s the parents’ fault when they hear of children who aren’t in school.

If this isn’t difficult enough, there are also the practical arrangements of looking after a school refusing child.  If you are working how do you combine this sudden demand for full-time care with bringing in an income?  As I’ve found, it’s difficult.  Childcare for children with special needs is hard to find and even if you can find it, is it affordable?  My little bit of work is hardly going to cover childcare fees but luckily for me my husband works at home one day a week which enables me to do a few hours of work.  However, that is all I can do.  I can’t take on any more hours of work and I’ve had to decline the offer of extra work because of the need for me to be at home.  Though there is never any question of putting my children’s needs before mine, to turn down work in these difficult times is a depressing experience.

Still, I try and remain positive and  hold onto the thought that we can manage on my husband’s income  though our division in labour does cause resentment from time to time (my fault, I’m afraid).  As the main carer of my children I sometimes feel jealous of my husband’s freedom to leave the house for his job.  Sometimes I imagine how great it would be to escape the confines of home and be paid for a job that had more respect and status than mother and carer.  I am careful not to dwell on this however as I know my husband has his own moments of despair and exhaustion.  Working long hours, being responsible for other people and then returning home to us can’t be easy either.  It is a situation where we just have to accept our differing roles and hope that one day things will become easier.

To anyone else going through similar experiences the only advice I can give is to take each day at a time and don’t be afraid to seek support even if it is just finding someone to talk to.  To those of you who know of someone whose children are not in school, please do not assume that these children are truanting delinquents.  Regardless of what the papers say not all these children are truants or the result of poor parenting; some children may be struggling so much with their life at school that they simply stop going.  So please spare a moment to consider what that child and their family is going through and what you can do to help them.  Taking a few moments to  call them or to visit them can seem so inadequate but simple gestures like this can lift the painful isolation that families like mine are experiencing.  Believe you me, a chat over a cup of tea and a piece of cake is the sort of thing that really lifts my spirits at the moment.

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27 Responses to School refusal – challenges, beaurocracy and betrayal

  1. trish westrop says:

    Thank you for sharing your experience. My daughter is a single mum with a child with Aspergers who is out of school at the moment. She removed him from a special school because he was being attacked by another child and the school did little to stop it. Such is the wonderful system in this country she then had the head teacher of the school call social services on her and they just turned up on the door step not knowing he had special needs or that the child that was the problem was the proprietors’ son. Having a child with special needs is a minefield of problems, you may dodge one but then another smacks you in the face. SEN is now *allowing* her to choose another school for her child because the claims made by the headmistress have been dismissed. It appears if your child has any form of autism you are open to abuse yourself by those in charge of education. Their point always being even after 3 consultants and a special speech and language therapist have diagnosed him with Aspergers and neurological problems and he has a statement his condition of course (in SEN and schools eyes and they are so ignorant) could always have been caused by abuse!
    Hence whatever happens those in authority will always blame the mother not the father who can actually just walk away from these problems permanently and is not held by law to be remotely responsible unless you are married!

    • Aspie in the family says:

      Hi Trish, thankyou for sharing your family’s experience. I am shocked at the way your daughter has been treated but sadly not surprised. I have also found that even with official diagnostic reports, education does not respond to them in the way they should. There is a huge divide between education and health; noone communicates to one another properly which is so damaging to our children’s health. My son’s report on his ASD was ignored by his mainstream school; they did nothing (even when I asked) and a few months later he suffered a mental health crisis and couldn’t attend school. I really believe that if the school had responded to my concerns and taken action to support my son, he would not be in the poor state he is today. Similarly for my daughter, we are desperately fighting to stop her becoming mentally unwell. But still the school will not accept and understand her formal diagnosis of aspergers syndrome; they insist on suggesting its my parenting. Many teachers have little training in developmental or any other disabilities and as a result come into the classroom and made massive assumptions of the behaviours they see. Fed by political hype, they assume that what they see is symptomatic of troubled family life and social deprivation, in some cases the behaviours are symptoms of hidden disabilities. As parents we have to fight against this and prove that not only do our children have a disability but that we are good parents. Its exhausting and unfair.

      I hope you daughter finds a better school. Deb

  2. Tania says:

    We have been through this to, though to a lesser extent than your situation. I feel like I’ve somehow failed if I can’t get one of the boys into school. Luckily, it’s an understanding special school who are working with me!

    • Aspie in the family says:

      I know that sense of failure though I tell myself its the education system that is failing my children. The lack of support has driven my children to this point, I think. The challenge is to now help them recover their damaged self esteem and reengage them with learning. It really shouldn’t be like this though. Deb

  3. fiona says:

    What a beautifully written, eloquent post. RT it on twitter until everyone has read it. This deserves to be read again and again. xxx

    • Aspie in the family says:

      Thankyou Fiona for such a lovely comment. I will RT it as much as I can and hopefully people can learn about school refusal. Deb xx

  4. Sharon shevlane says:

    Well said,everyword is heartfelt. There are people who feel your pain, but that is mainly either because they have been there, ie, a)experience or b) they have a vivid imagination and can picture the situation,unfortunatly if you dont have either of these then that means you do not have empathy, and not all people have this. You are doing a great job, do not let anyone tell you otherwise, you are a mother who only wants the best for her children, it is the education system that is out dated, and is i would say a danger to some children with special needs, not all, for example my younger sister has Downs Syndrome, well with this condition they seem too be very compliable, mostly happy go lucky and can fit happily into most situations, this temperment made for a very happy lovely joyful experience of childhood, she is the same today at 46yrs – never feels any pain or discomfort, MY experience of autism is at the other end of the scale, my Tom is tortured often, by his envirionment, but he is luckily able to express this, and I am able to empathise with him because I have experience and also I have a vivid imagination. I understand your pain I am there.

    • Aspie in the family says:

      Thankyou Sharon for taking the time to comment and sharing your experiences. I agree some special needs children do well in education but there are others like my children and your Tom for whom school can be hell. I agree with you that the education system is outdated and risks the health of some of our children. though my son has expressive language he was unable to tell us about his daily life at school until the day he had a mental health crisis and becaame a school refuser. That was his way of telling us how bad his life was at school. I wish more attention was given to how damaging formal education can be for some of our children. My son has not properly recovered from his terrible mainstream education and we’re still trying to build up his confidence and self esteem.

  5. My aspie son has gone through phases of seriously not wanting to go to school, but I have been lucky enough to work this through, with both him and his teacher (who is incredibly supportive).

    I can also see it from his point of view, as I was terrified of school, its bullies (pupils and teachers alike), and whether I’d be coming home having lost clumps of hair, or gained bruises. My parents were not supportive (unlike you) and, while I did play truant a few times, I did not dare ‘refuse’ school; I was beaten for far lesser ‘crimes’.

    I take my hat off too you, both as a child-who-suffered, and as a parent. You have huge status and respect from me, and admiration.

    • Aspie in the family says:

      Thankyou for commenting Leigh and sharing your experiences. As a parent it is so hard because you feel this awful pressure to get your children to school even though you can see the damage its doing to them. The last thing I want is for my children to continue to suffer at school and end up with more serious mental health problems. I’m just trying to find a way through this at the moment. Thank you for the lovely words of support. Deb

  6. Blue Sky says:

    This is something I fear, and you describe it so well xx

    • Aspie in the family says:

      Thanks Blue Sky; just trying to get through each day as it comes at the moment. Its hard with two of them struggling in the way they are. Deb xx

  7. JuliesMum says:

    Oh Debs, my heart goes out to you! I know exactly what you mean (from my own experience, I’m afraid). Thank goodness you have the wisdom to take it one day at a time and keep persevering. I can only hope you find someone in the system eventually who will actually listen to you.

    • Aspie in the family says:

      Thanks for commenting JuliesMum – lets hope that someone will respond to our daugher’s situation quickly. Its beyond the school; they haven’t got the resources or the knowledge to deal with this.

      PS hope things are OK in your household; will pop over to your blog soon and catch up with things. Just so overwhelmed with life at home that I’m struggling to keep up reading other peoples blogs.

      Deb xx

  8. Ann Beck says:

    A brilliant blog and so painfully true – I have been where you are now, the judgement is the hardest and most painful part to deal with. The frustration at the lack of understanding and the ‘system’ comes pretty close. Isolation and total helplessness – no-one can understand unless they’ve been there. My son was so bad he would throw up at the thought of going to school, when I finally got him out of the bathroom he would resort to anything – one time he climbed out of the window onto my roof! The school’s opinion – ‘he’s defiant’ – NOT helpful!
    He ended up in a nurture unit after months of fighting and they rebuilt his broken soul. He started secondary school in Sept and is already on his 3rd exclusion – you guessed it, for being defiant!
    I’m fighting to get him a statement but in all honesty I don’t hold out much hope with funding cuts as they are :(
    My heart goes out to you, put on your armour and fight! Thank you for giving me some reassurance that I’m not fighting alone. xx

    • Aspie in the family says:

      Hi Ann – thanks for sharing your situation. Describing your son as defiant really doesn’t get to the bottom of understanding why he is reacting in the way he is. If only schools would look behind the behaviour and understood why our children were reacting in the way they are then they would see that our children have a need for greater support. I really hope you get a statement for him (it sounds like he needs one) but prepared to fight for it. Thanks for the supportive words. Deb xx

      • Ann Beck says:

        You’re absolutely right – his defiance is a ‘reaction’ to situations he can’t cope with.
        I think the ‘defiant’ label is used to absolve them of any responsibility!
        I’m ready for the fight and thank you for your support. :) xx

        • Aspie in the family says:

          Wishing you lots of luck; if ever you want to chat or swap experiences you can find me on twitter @MumForAutism or drop me a line via my contact page. Deb xx

  9. This is such a great post! You did an absolutely amazing job describing school refusal. You did a better job than I could have. I can’t imagine the judgment you receive from other parents. It’s unfortunate. But you are absolutely correct in that school refusal is rarely ever about delinquency.

  10. Charlotte says:

    I think you’re doing an amazing job of bringing up your children and raising awareness of these important issues. I hope your family starts to get the support and understanding you deserve, if anyone can get people to listen and be constructive in their actions it is you. Good luck x x x

  11. sarahmumof3 says:

    I feel your frustration with this, it must be terribly difficult when you have a child who just can not cope with being in school, obviously forcing them in there is goign to be no good for anyone. I hope you find some support for your son and daughter to ease them back into school and if not you manage to continue tking each day as it comes xx

    • Aspie in the family says:

      Thanks for commenting Sarah. Hopefully we will get some further help soon but with the cuts to services, I am very fearful that my daughter will suffer and end up with nothing. I’m trying not to worry about the unknown and to take each day at a time. Deb x

  12. Jim Reeve says:

    Well said. School refusal can be a tough situation, but home schooling could be an option if you’re able to do it. There was a time when Jacob refused to go to school, but we were always able to get him to comply by using rewards. Now Jacob gets mad when he’s sick and can’t go to school. Either way you have to go with what works. And the truth is, why send an angry child to school? If a child with an ASD is angry, what are they going to learn anyway?

    • Aspie in the family says:

      Thanks Jim. As usual you offer some very wise words. Great to hear that you found something that works for Jacob. Unfortunately for us we have some big problems with our childrens schools which we need to sort out. As for homeschooling, I may consider it but at the moment I want to look at all options. Deb

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