Part 13 – the stress of parenting a school refuser

School refuser is sometimes used to describe pupils who are unable to attend school for a prolonged period of time which can be due to various reasons.  It is a term that was casually used to describe my son when he was out of education for eighteen months in 2009.  I was not happy with my son being labelled in this way as it did not fully convey the distress and anxiety that he was experiencing at the time.  Sometimes I felt the term school refuser hinted at my son being a truant whereas in fact my son became so fearful of school that he ended up becoming agoraphobic.
Caring for such a child is extremely stressful.  Not only do you worry about what your child is going through but you also find yourself wondering why this has suddenly happened and racking your brains to try and understand what triggered this crisis.  You also feel incredibly torn between feeling under pressure to get your child back to school and being sensitive to your child’s needs and caring for him/her at home.  It doesn’t help either knowing that councils can prosecute parents of truanting children which feels like a real threat when you are in this situation.  Neither does it help if schools turn their back on you, as was the case for us when my son’s school after an initial home visit and a referral to the mental health services, showed no further interest in my son’s education.  We felt truly abandoned. 

On top of this there is also the social difficulty of trying to deal with those friends and peers who really can’t get their heads around why your child is suddenly not able to go to school when he apparently looks OK.  It was also very hard trying to get people to understand how we were unable to leave the house and do things as a family due to my son’s agoraphobia and ASD.  Even worse for me were the busy bodies at the school gate who, learning that my son was no longer in school, were curious to find out why.  As my younger daughter also attended the same school as my son, I could not avoid going up to the school (as much as I wanted to) so I deliberately avoided the school crowd and the potential for awkward questions.  I was not comfortable discussing my son’s mental health issues on top of his ASD to people other than close friends and family and I certainly didn’t want my son to become playground gossip.  Not surprisingly, I found myself feeling excluded from the school community.

Aside from the emotional stress of caring for your child and trying to work with the authorities, there are also the more practical arrangements of caring for your child.  If you are working how do you combine this sudden demand for full-time care with bringing in an income?  Quite simply it is really difficult, particularly if, like me, you have a child who finds it very difficult being with other people and cannot cope with childcare.  I was fortunate though that at the time I was a home-based student and occasional voluntary worker so it was  easier for me to pick up the care of my son without having to resort to childcare.  We were also fortunate that we could manage on my husband’s income.  And I guess I am lucky that through this neat division in labour our family could function but unfortunately such a division can create resentment.  I have to admit that as the main carer of my son and the main negotiator with the professionals I sometimes felt overwhelmed and exhausted and during those times I also found myself a little bit jealous of my husband’s freedom to leave the house for his job.  Wouldn’t I have just loved to have escaped the confines of my home?  I didn’t feel this all the time though, just the times when things were really bad and my son seemed not to be making any progress and the authorities appeared not to be listening to me.  It didn’t help though when I had to turn down a job.  However, there was never any question of putting my child’s needs before mine though to turn down a job in the difficult times that we are living in is not good news for my future employment prospects.  Of course I remind myself that I am a lucky woman and have a supportive partner.  How difficult must it be for single parents who also find themselves in a similar situation of having to suddenly care for a school refuser?

So you can see that school refusal can have a massive impact on family life and to anyone going through this at the moment, you have my total sympathy.  It is one of the toughest times I have had to experience with any of my children, the effects of which are still with us today.

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10 Responses to Part 13 – the stress of parenting a school refuser

  1. Aspie in the family says:

    >@ Nathanielle – thank you for commenting and different perspectives are welcome. What I would like to say is that this blog is about a mothers perspective about raising autistic children and the difficulties that people like me face when struggling to get the appropriate education and support for our children. It does not aim to provide support for those personally affected by ASD but to those caring for autistic children who find themselves isolated and unsupported.

  2. Nathanielle says:

    >I was diagnosed with Asperger's when I was 14. In my area I was the first to recieve the diagnosis, as the papers had just been translated two years earlier.

    I went through the bullying too. I'm always looking for ways to help out younger people, especially ones with the diagnosis.

    I think it's best when people like myself try to show the younger ones that it is possible to survive school and get out there on your own.

    I hope things get better for your son and after reading my own blogs, if you have any questions I'd be happy to answer them. (Not sure if a different perspective could come in handy or not, but just saying.)

  3. Aspie in the family says:

    >@ Fiona – hi there. Totally shocked that J was labelled a school refuser at the age of 2 and really sorry to hear that you went through this. Just what was that SEN officer thinking of! I'll try not to rant but I don't think many people, including some teachers, realise how hard it is to get a child to nursery/school when they are so physically resistant. It is not always a case of these children feeling a little bit worried with a bit of tummy ache – some of these children actually become physically ill or impossible to shift because they are so frightened!

  4. Fiona says:

    >A little off topic here but I just had to tell you that J was labeled a school refuser at the tender age of 2 yrs! Long story, but basically his SEN officer referred him/us to educational welfare because we had chosen not to send him to nursery!!!! Educational welfare sent us a letter and then after a phone call an apology. Stupid, stupid system! Horrid, horrid SEN officer! (Notorious throughout Tynedale for rudeness!)
    I'm glad that you managed to get your son into a school that met his needs better and I'm sorry that you both went through so much stress.

  5. Aspie in the family says:

    >Hi Grit and thanks for popping in. Totally agree with your observations re EWO's and LEA employees – I was really disappointed to see how they acted like puppets to the system and that they just couldn't see the needs (or rights) of my son. I had to change my approach in order to eventually get my son into a more appropriate school.

  6. Grit says:

    >you have my sympathies. i hear stories like this often; they are common in the worlds i inhabit of home ed. EWOs and LA employees can come across as lacking understanding, empathy and insight, seeming more fixated on the system and their job procedures than listening to a child expressing what they need. hope you can find the best situation for your child and your family.

  7. Aspie in the family says:

    >@ Esty – sorry to hear you are having such a tough time but I totally understand your situation and that regarding work. Our Education Welfare Officer was not particularly helpful and we ended up having the inclusion team involved who had a better understanding of ASD & school. They were aware of how many ASD kids end up out of school which makes me even more angry that my council don't do enough to prevent this happening. Meetings were very difficult and we had a fight in getting our son into specialist education. Will discuss this more in future posts.

    @ Looking for blue sky – hi. I hear many mums (and some dads) of SEN kids who struggle to combine work and caring. It seems to be quite a problem. I hope something sorts out for you in the future; maybe your blogging talents will pay off.

    @ Steph – many people don't realise how difficult it is to get a physically resistant child into school – I empathise with your situation. As for us, we have moved into better times recently. More to say in future posts.

  8. Steph says:

    >I can imagine how stressful that is. We're not at that stage yet, but our girl did refuse last week to go into her special nursery and has already said this morning she doesn't want to go. Other parents don't understand when you say you can't make a 4 year old do it. She never wants to go to school in the morning, so I can imagine a time coming, like your son, when she refuses everything. I'm already sighing inwardly with the thought of it. Have you moved past the most difficult times?

  9. Looking for Blue Sky says:

    >Luckily I have avoided school refusal so far, but it could happen at any time. I am a lone parent and since I lost my part-time PR job, I have not managed to solve the problem of how to care for three kids (two with special needs) and work, but I am still hoping to!

  10. Esty says:

    >This could have word for word been written by me, with the only change being that our other child is a boy. My son with Asperger's now attends a unit for just two hours per day but after 18 months of school refusal in Yrs 6 and 7 we are proud that he can do this. Like you say, when they are pressuring you to get them into school they have no clue of the emotional torment for the whole family. I have had to give up two jobs and now earn very little working from home as an exam marker and we are just about surviving on my husband's money. My career has nosedived but my son is more important. I, too, regret that I have had to become the hard nosed Mum in order to fight for what my son is entitled to. I almost find it too exhausting to report back to my husband about what has been said in meetings – it is sooo draining to constantly be proving to other people that my son does have these extra needs and we are not the bad parents that they initially made us out to be. Do you find that the professionals are always moving on so every meeting there are new people to tell everything to?? The last new EWO thought it would be a good idea to get my son to go back to his old high school with the result that he refused again for a month after being in the unit with no problems for a year. Fuming doesn't even cover it!

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