Friday 25 March 2011

Home educated children with special educational needs

Any debate on home education must take note of the fact that a large proportion of the children deregistered from school have special needs of one sort or another. What do we mean by 'special needs'? This term first became widely known as a result of the 1981 Education Act and has come to replace expressions such as 'disabled' or 'handicapped'. Now there is a slight problem with this terminology. Most ordinary people know perfectly well what they mean by 'disabled' or 'handicapped'. They mean people who are blind, deaf, in a wheelchair or have Down's Syndrome; that sort of thing. Because the expression 'Special needs' has replaced 'handicapped' in common usage, there is an unspoken assumption among a lot of people that a child with special needs is similarly likely to be blind or confined to a wheelchair. Well, some are; most are not.

One of the most interesting things which one notices when reading the lists, blogs and forums about home education in this country is that although it is generally agree that perhaps a third of the children being home educated in Britain have 'special needs', hardly any of them appear to have what would once have been described as disabilities or handicaps. True, they are dyslectic or clumsy. A good number seem to have the symptoms of either wilfulness or ADHD, depending upon one's point of view. Not a few upon the autistic spectrum, although in very many cases this has been diagnosed by their parents rather than the appropriate specialist. A lot also suffer from Chronic Fatigue Syndrome, ME and various other debateable and ill-defined conditions of that kind. Wholly absent are children with severe learning difficulties, Down's, blindness and so on. I know one or two such; but then I work in the field. They seem completely invisible from the point of view of most home educators. Does anybody actually know a home educated child in a wheelchair or with Down's Syndrome?

I suppose the question I am mulling over here is why are the parents of children with relatively minor disorders such as dyspraxia or ADHD so much more ready to take their children out of school than are those whose children are deaf or blind? After all, a child who cannot sit still and follow simple instructions is probably in need of quite as much specialised help as is a child who cannot see at all. I suppose that this might be a statistical artefact; there may be many more children with ADHD or on the autistic spectrum than there are deaf, blind and severely learning disabled children. I have an idea that there might be another explanation entirely for this situation, but before I explore this, I would like to know what others think. In short, the nature of the problem is this; there are many children in this country with an enormous variety of special educational needs. The only ones who seem to be deregistered from school though, seem to fall into one or two categories. Why should this be? Why do we read quite often of home educating parents whose child is on the autistic spectrum or has an attention deficit, but hardly ever hear of somebody whose child is non-verbal, has global developmental delay or severe difficulties with walking?

30 comments:

  1. Simon said....Does anybody actually know a home educated child in a wheelchair or with Down's Syndrome?

    Well I do.... a quick rough count comes up with 4 children with Downs, 1 child with spina bifida, a couple non verbal children with SLD, one blind,
    - you really need to get out more, Simon! (these are home ed children I know in real life, BTW, not just online!)

    However as a parent of an autistic child (and one for whom autism has a profound effect on all aspects of daily living, not just education), I can also tell you why there are so many children in the autistic spectrum in the HE world; .... it is because HE works. One glance of my daughter's life "before" and "after" would show that.

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  2. 'you really need to get out more, Simon! (these are home ed children I know in real life, BTW, not just online!)'

    Well, of course I did say that I knew a few such cases myself; I was wondering why they do not seem to be mentioned on lists and forums. I am sure that if my own child had been on the autistic spectrum, I should have been all the more determined to educate her myself.

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  3. "Does anybody actually know a home educated child in a wheelchair or with Down's Syndrome?"

    Three in wheelchairs that I've met in person, plus several others with less obvious health issues like diabetes and asthma whose health was put at risk at school.

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  4. "I was wondering why they do not seem to be mentioned on lists and forums."

    For the families I know, they just don't have the time or energy for extras like lists and forums and I'm not sure why others would bring it up on lists in their absence.

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  5. For the families I know, they just don't have the time or energy for extras like lists and forums and I'm not sure why others would bring it up on lists in their absence.'

    This is very interesting and rather what I suspected.

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  6. "This is very interesting and rather what I suspected."

    BTW, I didn't mean to imply that they are cut off from the HE community. It is more difficult but the families I know are still involved with local groups and are kept in touch with what's happening nationally by friends and even manage to attend HE camps.

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  7. Just from my own experience I have a son with Autism (Aspergers) and a good friend who's son has Downs. My friends son was diagnosed when he was a day old, it is a defined diagnosis that has opened doors for appropriate support from day 1. Whereas my son wasn't diagnosed until 2 weeks after his 6th birthday and the consultant said he is only the 3rd child she has diagnosed under the age of 7 in sixteen years of practice. Had my son been in school he would have gone 4 terms without the support he needs, probably longer as after receiving diagnosis we would then have had to start the whole statementing process before support could be put in place. Also had he been in school I would have had to wait until the school were prepared to make a referral for assessment whereas I was able to just go and ask our GP. We didn't have to wait around for a school to make reports unlike another friend of mine who's son is in school and for whom the assessment process is taking twice as long as my son's did. I wasn't prepared to waste that amount of my son's life waiting for someone else to do the right thing for him. Whereas my friends son who has downs has had 1:1 support since the day he started school. Don't get me wrong I'm not saying his parents have it easy, I know they have to fight sometimes daily to be sure he gets the best out of his education but they didn't have to spend a year waiting for a diagnosis and they don't have to battle to have his needs recognised as they can clearly be 'seen'.

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  8. 'Whereas my friends son who has downs has had 1:1 support since the day he started school. Don't get me wrong I'm not saying his parents have it easy,'

    This is something else which I have noticed, not just with home educated children; those with children who look 'normal' have a rougher time generally. People are more apt to be tolerant of a Down's child cutting up rough in a shop than they are with a kid who looks as though he has nothing the matter with him. There is indeed a huge amount of support for the child who is blind or in a wheelchair and this may not be so readily provided to a child who looks like everybody else and just behaves differently. Does anybody think that this might explain why the parents of children who look 'normal' might be more quick to take their children out of school?

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  9. My son is hard of hearing and as Clare said, it was picked up at screening and immediately I was into a well established support network. The Teacher of the Deaf rung me the next day and he was supported by her and an ever increasing list of health professionals from that point on. He struggled in school with not being deaf enough; deaf enough not to hear the teacher but not deaf enough for a unit. We took him out of school and the problem went away (not his deafness unfortunately!). He struggles but he is making great progress.
    My best friend has a child with Autism. He was severe enough for a Special School and has fantastic support. I wonder if people suffer from their child not being "bad" enough for a unit but they struggle in school with ASD as well. Not that a Special School is the perfect place either! There is a whole population of children who fall through the gaps and actually home education can offer a real alternative. Our Teacher of the Deaf is still available to us but I understand a lot of the other Special Needs Support can disappear when the child is out of school which is a real shame.

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  10. 'Does anybody think that this might explain why the parents of children who look 'normal' might be more quick to take their children out of school? '

    The stigma attatched to this can be very difficult a thing for some parents to have to deal with.
    My son has an ASD, and certainly fell into the catagory of looking 'normal' but not acting so.
    In the end I got bored with making excuses for him, teling people politely what the problem was, and even taking the time to remind teachers that he had Aspergers!

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  11. 'The stigma attatched to this can be very difficult a thing for some parents to have to deal with.'

    This seems to be general complaint among those whose children fall on the autistic spectrum. I can be quite objective about this, as my own child does not display these symptoms, but I have noticed that when, in connection with my work, I take out a child who is obviously disabled; any unusual behaviour is greeted with compassionate glances. How different the case with a child with behavioural difficulties, but normal appearance! The typical reaction then is indignant looks, tutting and an air of 'Can't he keep his kid under control? Disgraceful parenting!'

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  12. Simon, I know so many home educated children with downs - at least 8, non verbal children with severe learning difficulties and autism (diagnosed by doctors) deaf and hearing impaired children, one totally blind child and several with visual impairment, a small number with mobility issues, using wheelchairs, and several with cerebral palsy. HE special has a number of these families, although the children with ASD are the biggest single group on there. There's an email list specifically for people home educating children with DS. I think there are a great many more children with dyslexia and ASD generally, in the school system as well as out, which would be one factor. Another could be the respite element of school for a child with severe difficulties. Physical care of a child needing lifting can be exhausting, and getting out to do interesting things are difficult, so school provides a change of scene. Some LAs and charities only provide certain equipment such as braillers and communication aids through schools.

    Children with significant developmental delay may have difficulty integrating into home ed groups with a mixed group of peers. However, there are a number of families keeping children at home to do specific programmes such as sonrise, not being much interested in the discussion on email lists. I know about some of these people through the enquiries I get from EO, from HE special and meeting people at local groups and events like Hes Fes.

    Another factor is that people on the lists talking about how well above their age their child is performing can be a bit of a put off when your child is not making such wonderful progress, and so these families are just not on the list. It may be that much of the conversation doesn't seem relevant, or they only ask about LA issues and not about the special need because they don't expect to find others in the same boat.

    Finally, some groups of children are, by definition, going to struggle in school. Children with an illness that makes then exhausted and who therefore miss lots of school, for example, or children who struggle with noise and over stimulation, or children who find it hard to be still. It's not hard to see why these children would benefit from a very alternative education style, and the parents are likely to be educating at home because of the child's needs, not despite them.

    As with all children, school fits some children well, and not others. A child with DS, blindness, CP may well find a school that fits them, (special or mainstream) like the rest but when the child has something like chronic fatigue, or asd there are obvious problems with issues with going to school.

    Christine

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  13. The Warnock report (1978) recognised that some intellectually able children with physical disabilities were missing out on a good education because they were in special schools. The report recommended the inclusion into mainstream education of children who could cope with it.

    At that time, schools and teachers had considerable flexibility in what they taught and how and all teachers would have been familiar with the idea of tailoring a child's education to the child's needs. I have an OU reader in special education dated 1981 that describes some fascinating projects undertaken by local authorities in the integration of disabled children into mainstream schools and how mainstream teachers worked alongside special education teachers.

    All this changed with the Education Reform Act 1988. Since then we have had a curriculum-centred rather than child-centred education system that now has performance indicators for schools derived from children's performance in standardised tests. Systems pressures have increasingly focussed on the attainment of children within the middle ability range and have made it increasingly difficult for teachers to tailor their teaching to the needs of the children in their class, as distinct from a hypothetical class of standard children.

    In addition, special education courses have been steadily cut, meaning that there isn't the special educational expertise within the education system for mainstream teachers to access informally.

    So we have a situation where the system isn't geared to cope with the range of children in it, where teachers aren't trained to teach the whole range of children in schools, and many children whose disabilities are not visible and not particularly serious, and who would have coped reasonably well in schools in 1978, can't do so thirty years later.

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  14. Teacher Julie says-However as a parent of an autistic child (and one for whom autism has a profound effect on all aspects of daily living, not just education), I can also tell you why there are so many children in the autistic spectrum in the HE world; .... it is because HE works. One glance of my daughter's life "before" and "after" would show that.

    How does autism affect your daughter with daily living?
    did she ever go to a state school? and if so how did their fail her?
    how could government do better to help your daughter?

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  15. Peter...my daughter's autism is complicated by other health issues and also learning difficulties, but like many autistic young people, one issue is that she doesn't "see" the world in the same way as others. So her understanding of cause and effect, for example, makes life complicated, and she needs reminding about the neeed to do even trivial tasks. She needs routine, a timer and alarm (to get herself to places at the right time) .. the list is endless.

    As for education - she started school life in a the same vilage primary school her older siblings had been to, but that was a disaster, she later sepnt a year in a private school, (small class sizes etc) which was much better for her academicaly but she couldn't cope with the other children- even with only 10 in a class.

    In fact that is the main reason, I am sure that many ASD children do much better at home - fewer complicated human relationships with classmates (who are often intolerant of difference).

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  16. 'In fact that is the main reason, I am sure that many ASD children do much better at home - fewer complicated human relationships with classmates (who are often intolerant of difference).'

    That was definitely the problem our son had. School was just too noisy and confusing. The change in him in the few weeks he was there was shocking.

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  17. 'Not a few upon the autistic spectrum, although in very many cases this has been diagnosed by their parents rather than the appropriate specialist. A lot also suffer from Chronic Fatigue Syndrome, ME and various other debateable and ill-defined conditions of that kind. Wholly absent are children with severe learning difficulties, Down's, blindness and so on.'

    You know of actual HE families who diagnosed their children's autism themselves, without a specialist? That's odd. My experience is that parents are very reluctant to make that dx. I know several kids who are undoubedly on the spectrum but whose parents are very anti-labelling, so have never pursued one. Many will remove their children from school to avoid such labelling.

    And we've known one child with Downs, 2 with VI and many with various leaning difficulties or ASD. Their needs, associated with their conditions, are all much better met by being HE'd, and in many cases were not being met in school.

    Even the ones whose parents are too afraid to get an official dx are meeting their needs better than in school.

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  18. 'Why do we read quite often of home educating parents whose child is on the autistic spectrum or has an attention deficit, but hardly ever hear of somebody whose child is non-verbal, has global developmental delay or severe difficulties with walking? '

    It's about needs being met, isn't it?

    When you've raised this question before, Julie has explained that her non-verbal globally delayed son has 2-3 people assisting him at all times in school. If he came home he would get LESS help.

    Whereas, her autistic daughter's needs were not being met at school and she was able to meet them better at home.

    I remember this coming up here at least twice before.

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  19. "Not a few upon the autistic spectrum, although in very many cases this has been diagnosed by their parents rather than the appropriate specialist."

    One of the reasons why many parents don't have an official diagnosis for ASD for their children is the difficulty in getting one. If a child has a diagnosis then the LA is obliged to provide support which costs money. There was an American doctor who came over to help with the backlog of ASD cases who left again because she was told not to give the children diagnosis because they didn't have the money to support them. She became a whistleblower and reported this to the press before she returned to America as she felt she couldn't continue to let these families down like this.

    In my own area at the age that we would have tried to get a diagnosis there were no health professionals in our county that were able to diagnose ASD. In fact for a time there was no one available for any mental health problems, for both adults and children.

    Things are better now, but having lived so many years without the diagnosis, and home educating therefore not needing the support in school, there seems to be no reason to now go though the hassle of getting one.

    But just because there is no official diagnosis, doesn't mean to say that it is only the parent's word. We have confirmation from others such as behavioural optician, physiotherapist and GP, it is just that those people are not allowed to do the official letter that says my son is autistic.

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  20. 'You know of actual HE families who diagnosed their children's autism themselves, without a specialist? That's odd.'

    Is it? Correct me if I am wrong, but I seem to recall that this is just what Shena Deuchars of Education Otherwise did.

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  21. I don't know Shena, so have no idea what her circumstances are. It that the case you are extrapolating from?

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  22. 'I don't know Shena, so have no idea what her circumstances are. It that the case you are extrapolating from?'

    By no means. It is very common on the lists and forums to read parents claiming that their child has Asperger's and that they know this without going to all the fuss and bother of having the thing diagnosed by a professional. Are you by any chance a member of the Aspie Home Ed list?

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  23. No, I didn't realise there was one.

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  24. Julie says-one issue is that she doesn't "see" the world in the same way as others. So her understanding of cause and effect, for example, makes life complicated, and she needs reminding about the neeed to do even trivial tasks. She needs routine, a timer and alarm (to get herself to places at the right time) .. the list is endless.

    I dont know how you manger cant be easy? I never like routine myself dont like being told to do things at a certain time. Have you tried just leaving her to do things?

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  25. I think you may have hit the nail on the head. My ds was diagnosed with Aspergers and dyspraxia at the age of 9. We had been going to Drs, peads, occupational therapists, ed psychs etc since he was three but they kept passing it off on one thing after another but each time he didnt quite fit their suggested dx. When he was finally diagnosed all the school could say was "Well he doesnt look autistic to us." *rolls eyes*
    The school expelled him more than they helped him. My oldest dd has dyslexia, my youngest selective mutism and both have processing problems, and again the school didnt want to know.
    In all three cases these hidden disabilities were not enough to secure funding and services - its definitely a huge failing of the system.
    However, we have been lucky in South Somerset in that they didn't require a statement to acquire funding for ds. He ended up receiving the highest level funding available (usually reserved for kids in special schools) and support above and beyond - it's impressive really.

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  26. I know the previous posts are a year old but I would like to comment as I have just taken my 2 children out of main stream school with plans to home educate them both. They are both on the autistic spectrum diagnosed by medical profession and my son has dyspraxia. We have found the whole education process in school an absolute joke, we managed to get our son a statement ourselves we also arranged a CAF ourselves to try and make the school help our son and to have the school implement the recommendations of O/T, IDS Autism Team etc but nearly all recommendations have never been implemented.

    We have had our local parent partnership involved yet still the school have not done their job. The school head teacher and my sons teacher told us to pull my son out of school and home educate him.

    He has been bullied and his anxiety has resulted in repetative hand washing, we have told him he is not going back to school and he has washing has drastically reduced from 25 times a night to once or twice. I just want to feel that I can do the best for him and I tried everything to make it work for him at school. I really do think their is a gap that children with asd, dyspraxia, dyslexia, adhd, pda etc just cant manage in a mainstream school but are not really suitable for a special school either. I know I am not alone in this feeling.

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