Part 15 – the struggle to access education

So what do you do if your child is out of school for a prolonged period of time?  Whatever the reason for your child’s absence, it is really important to work with the school and the authorities.  You see, as parents we are responsible for our children getting to school and there is a risk that action can be taken against us for truanting children. 
 As was the case with my son, it could be that your child is not a truant but suffering from an undiagnosed mental health condition, illness or disability.   From a school’s perspective they may not recognise that your child has any of these issues and they may wrongly assume that there is a truanting issue.  This is why it is important to not only seek medical advice if necessary but also to communicate with the school about your child’s situation.    If this is a daunting prospect, seek advice from an organisation such as parent partnership who should know the ins and outs of the education system and can even attend meetings with you if you so wish.   
Certainly this is what I did when my son became unwell and couldn’t attend school.  I have to admit I felt pretty nervous informing the school of my son’s situation because my relationship with the school had by then deteriorated.  After years of struggling to get the school to understand and respond to my son’s difficulties, I had lost trust and confidence in them which reached an all-time low when the school failed to respond to my son’s ASD diagnosis. 
Nevertheless, I plucked up courage and I told them about my son’s health problems and to give the school credit, they quickly referred us to mental health services but unfortunately it took months to see a psychiatrist.  Not only was there this agonising wait but my son was also left languishing for months without any form of education.  And yet  there is governmental guidance that states that the local education authority (LEA) has a responsibility to ensure that children who are out of school receive a suitable education.  So why didn’t anybody in the school or the LEA organise something?  Yet again, we had to be the proactive ones and organise meetings with the school which eventually led to the LEA organising home teaching for our son. 
So in the summer of 2009 four months after my son first became unwell he was finally assigned a tutor to come and work with him at home  Unfortunately it was not very successful.  My son found it hard to concentrate for long and became exhausted quickly.  Fortunately the teacher realised that my son required a specialist teacher and another request was placed back into the system.  Yet again another delay that was not helped by my elder daughter contracting swine flu in the last two weeks of school before the summer break which meant no visitors to our house and no tutor until September!!  The summer of 2009 is not one I shall easily forget!
So, in the autumn of that year this new tutor appears on our doorstep, full of bounce, energy and positiveness.  He was such a contrast to the gloomy atmosphere in our household where we felt drained and exhausted by our experiences over the previous months.  Indeed I was feeling very distrustful at what we had gone through and I’m sorry to say I was quite defensive towards the tutor.  You can hardly blame me; who wouldn’t be fed up with the system when it fails their child and exposes a family to such emotional stress? 

And this raises a point for any professionals and practitioners reading this – that is, when parents emerge from a bad experience with public services those parents may become distrustful and defensive.  If you are following in the wake of others’ unprofessional behaviour then please be patient with families like mine – you need to help build our trust in your profession from scratch and it does take time for us to heal. 

 And this is what started to happen with this tutor.  He was so patient, supportive and positive that he not only helped my son to start to reengage with learning again but he unexpectedly started to help me find something positive in the education system. 

Some useful documents:-

https://www.education.gov.uk/publications/eOrderingDownload/DFES-0732-2001.pdf (Access to education for children and young people with medical needs (including mental health problems))
http://www.ace-ed.org.uk/Resources/ACE/advice%20booklets/School-Attendance-sept09LR.pdf (school attendance – a practical guide to parents’ legal rights)

You may also be interested to read my previous posts:-
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3 Responses to Part 15 – the struggle to access education

  1. Aspie in the family says:

    >Hi Lucewoman – thanks for contributing. You are absolutely right that positive staffing is key to caring for ASD pupils. But it is also about departments and services communicating and working with one another and making sure that children like my son are not made to feel abandoned.

    Hi RP – thanks for commenting and its Ok to have a little rant. Its an emotive subject when our children are treated in the way my son was. You are right, noone offers any options or help – we have to go out and find it. Yet it is so difficult to do this when we are in such a stressful state caring for a poorly child.

  2. RP says:

    >Its so wrong that as a parent it is up to you to do everything, none of these professionals and authorities are there saying let us help you. The expression that those who shout the loudest get what they want springs to mind. Over the years we have felt it is almost like 'oh, you know that we can do that, or offer this, I guess we better initiate it then' it is never a case of them sitting there and laying out the options and helping you. You should be proud of how much you do for your son. Thank god for your wonderful tutor, no child should have to miss out. Sorry had a little rant there.

  3. LUCEWOMAN says:

    >Positive staffing is a key issue in the care of pupils with an ASD. Some of the teachers and assistants I worked with had such an understanding of the pupils and families needs. Some didn't, and worse-they didn't want to. All the training in the world won't help someone to understand how to deal with Autism if they would rather plump for the "they must come round to my way of doing things" attitude. There is such a limited understanding of ASD within certain areas of education. Once, Ros Blackburn came to talk at the school. Despite arriving in a highly agitated state, explaining her feelings, neuroses, obsessions and so on in great detail, all anybody seemed to take from the talk was "she said you have to say 'no' to Autistic kids or they'll never learn". That was such a small element of her talk.
    I hope your son gets the education and understanding he deserves, there are SOME excellent teachers, carers and professionals, just rarely all working together at the same time!

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