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nellie

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Posts posted by nellie

  1. Posted · Report reply

    Welcome to the forum hertsmummy, huge hugs to you and yours >:D<<'> >:D<<'>

     

    I agree, I think you should go with your instincts. Observe your daughter and document any difficulties and behaviours, good and bad. Use a dictaphone if you don't have time to write. It will not only be useful for professionals but it may help you to understand what is going on.

     

    I can relate to your situation. My child displayed the Jekyll and Hyde behaviour from a very early age and still does at the age of 30. Having to ‘pretend’ has and still does have a huge effect on his physical, emotional and mental health. He still presents with this behaviour now he is living in a residential setting. If he does have to pretend for long periods he can become ill and end up in a catatonic state.

     

    Unfortunately it can have an effect on parent/professional relationships. They may not understand and you end up wasting time and energy trying to convince them, when all you want is an explanation and some support.

     

    The following information relates to the Jekyll and Hyde child, I hope this helps with finding the reasons for the contrast between home and school even if it is just to rule it out.

     

    I started this topic some time ago, have a look, you will see you are not alone.

    Although it talks about the passive child I don't believe it's only passive children who can display this behaviour.

     

    Do you have a child who is passive or attempts to, Do you have a child who is passive or at

    http://www.asd-forum.org.uk/forum/index.ph...&hl=passive

     

    There's also a forum poll on the subject.

    http://www.asd-forum.org.uk/forum/index.php?showtopic=198

     

    This has also been well documented by professionals experienced in autism/AS.

     

    Meeting the Needs of Children with Autistic Spectrum Disorders

    By Professor Rita Jordan and Dr. Glenys Jones

     

    When life at school and home is going well for the pupil, and parents and staff are receiving positive reports from each other, it is likely that parent-staff relationships will be easy to develop and maintain. However, both staff and parents need to prepare for times when the child's behaviour or performance might be viewed as a problem either at home or at school. Staff-parent relationships might then be more difficult. It is possible, for example, for each to blame the other for something they are doing or not doing with the pupil. It is important in these instances to gather information on the nature of the problem and on the factors which might be contributing to this at home and school. It can be easy to take the quick route and guess what the cause might be, without making adequate enquiries and getting clear, factual information from all involved. Engaging in speculation is not helpful and is likely to lead to the apportioning of blame and ineffective solutions. This is particularly true when the child's behaviour appears to be very different at home from his or her behaviour at school. Pupils may pose no major behaviour problems to staff and be very undemanding and well behaved in school. When they arrive home, however, they may engage in challenging behaviour towards their brothers, sisters or their parents. It seems as if the pupil manages to contain all the anxieties and difficulties experienced at school and releases these on returning home.

    For some children, the reverse scenario is true, particularly when the child first starts attending school. The child may be relatively easy to manage at home, perhaps because the environment is fairly constant and familiar and there are few demands to be sociable or to engage in tasks which are not interesting to them. In school, they find themselves in what is to them a noisy, confusing, social environment where people attempt to communicate with them in ways which they often do not understand. In addition, they are encouraged to engage in tasks which may hold little interest or meaning for them. Their reaction is to try to sabotage the activity or to escape or to do nothing, all of which challenge the teaching staff. When parents and staff hear very different accounts about the same child, they may find it hard to believe or they can be quick to blame the other. It is important to acknowledge that very different behaviour at home and school is a phenomenon found in some children with ASD (as it can be in others).

     

     

    Be aware of two characters

    page 39 of Tony Attood's book – Asperger syndrome - A guide for Parents and Professionals.

     

    The child may be very conscious of the necessity to follow the codes of conduct in the classroom and to try to be inconspicuous and behave like the other children. This pressure to conform and retain self control can lead to enormous emotional tension, which, like a compressed spring, is released when the child reaches home. Here the child is a different character, almost a Jekyll and Hyde. This is a feature of some children with Asperger syndrome and not necessarily an indication of the parents being unable to manage their child. It will help for the classroom teacher to have a range of relaxing or solitary activities for the child just before they return home. Parents may also consider a period of relaxation or energetic activities when the child comes home to dissolve their tension from a long day at school.

     

     

    "Health Issues" books entitled "Autism" by Sarah Lennard-Brown chapter 5, page 53:

     

    Encouraging communication

    'We have several children with Asperger's(sic) syndrome at the school. As a rule, they are very law-abiding and little trouble. In fact it is very easy, I think, to underestimate how difficult they are finding school. Certainly some of the children we have do not display their anxiety at school. They appear to be coping most of the time, but can become very distressed when they get home. It took me a while to grasp this idea. If teachers are not seeing signs of distress at school, they can easily assume that tantrums at home are nothing to do with them. Now I realise that children with autistic spectrum disorders take a while to process what happens at school. They may not react to anxiety, which started at school, until many hours later. We now have a policy of encouraging parents to let us know about any anxieties that may be building up, so that we can nip the problem in the bud.'

    (Malcolm, senior school headmaster)"

     

    An article about a child's experience

    I felt like my head was exploding.

    http://www.guardian.co.uk/education/2006/dec/12/schools.uk1

     

    Hope you get some answers and support ASAP.

     

    Nellie xx

     

     

  5. Posted · Report reply

    Hi Sally,

     

    Yes this could be CVS but it could be something else.

     

    Have you witnesses your son vomitting in his sleep? He might have vomitted and gone back to sleep.

     

    My son never made us aware that he had been sick, we could find him in a bed soaked with bile, urine and saliva. During a period of illness he always slept in our room so we could keep a close eye on him. He would refuse all offers of drink and food, it was very difficult to keep him hydrated. He would be reluctant to move. He was hospitalised once for observation during an episode, but they could not understand his illness, which we managed ourselves as they had nothing to offer. At times he was so ill we thought he would die.

     

    Sally, I do think you should make the doctor aware of everthing including the possibility of this being CVS or becoming CVS. I would like to stress that his sickness could be the result of many things, I am only making you aware of CVS and the implications, it's not my intention to scare or frighten you and I do hope I haven't.

     

    Nellie >:D<<'> >:D<<'>

     

     

     

  6. Posted · Report reply

    A google search brought up this from ASD Friendly.

    http://www.asdfriendly.org/board/index.php...rt=#entry209755

     

    Interestingly it mentions acid bile, my son rarely vomited stomach contents it was almost always foul smelling acid bile, which took the colour out of any soiled bedding. In the beginning it wasn’t such a big problem but as it got worse he could vomit 20 to 30 times a day. The longest episode lasted three weeks but I believe the episodes were prolonged by his fear of illness. My son didn't eat at times of stress so this could explain the lack of stomach contents.

     

    I have emailed CVS UK to enquire about the prevalence of CVS in individuals with autism.

     

    Nellie xx

     

  8. Posted · Report reply

    Hi Karen,

     

    You're welcome. :) I would hate families to suffer what we suffered. I know Cat has had huge problems too and I will always be grateful to her for bringing it to our attention. Thanks Cat :notworthy:

     

    I had always intended to enquire if CVS is more common amongst people on the autistic spectrum. Sadly I was also too involved with my son to find the time, now things are settled I will endeavour to find out and post an update if this is the case.

     

    Once CVS is recognised it is a very good, with a bit of detective work, at highlighting the persons difficulties/issues.

     

    Nellie xx

     

     

  9. Posted · Report reply

    Sally,

     

    I'm not an expert on CVS but I would imagine that it could be once but it would have to follow a pattern/cycle. Looking back my sons sickness was never severe to start with.

     

    I discovered CVS only a few years ago when Cat posted information on the forum, it was such a relief to know there was an explanation for these episodes and that we were not the only family going through this. I knew instantly that this was the problem, he had all the symptoms and matched all the criteria apart from diarrhoea.

     

    The onset of vomiting is most commonly during the night or early morning and this was certainly the case for my son. The onset rarely happening during the day and only happened at school once. We had great difficulty getting them to understand my sons difficulties or that school was causing him great stress. He always pretended he was coping at school, he wasn't diagnosed with autism until he was 19. If the situation had happened today I'm sure I would have been suspected of MSBP (Munchausen Syndrome By Proxy).

     

    These episodes could always be related to a situtation that caused him stress, anxiety or excitement. For example on a morning when we were due to go on holiday we would wake up to find he was ill and having been ill during the night without our knowledge.

     

    It might be worth keeping a record of your sons sickness and bearing CVS in mind. The school and your GP should be looking to see if these episodes are caused by stress and anxiety, if this is the case they should be doing everything possible to reduce his anxiety and increase his confidence.

     

    I hope this helps.

     

    Nellie >:D<<'>

     

     

     

     

     

  10. Posted · Report reply

    Hi Sally,

     

    I couldn't say if your son has CVS but I would bear it in mind. The onsought of my sons episode were infrequent and mild, but at it's peak, the longest he was well (in his 12th year) was three weeks. His was stress related but could also be brought on by excitement, any extreme emotion can by a trigger. The condition was complicated by his fear of injury/illness, I believe this fear prolonged the episodes.

     

    He was first diagnosed with stomach migraine, children with CVS have a strong predisposition to develop migraine headache. This link has details. http://www.cafamily.org.uk/Direct/c90.html

     

    I hope things improve for your son and you find some answers, good luck.

     

    Nellie xx

  12. Posted · Report reply

    It might be worth looking at Cyclical Vomiting Syndrome http://www.cvsa.org.uk/

     

    My son suffered severe bouts of sickness from the age of 8. His reaction to the episodes would be very severe and he would become catatonic, sometimes for as long as three weeks. I took him out of school for a year, during that time he didn't have a days illness. He's now 30 and hasn't had an episode for some years, he has an excellent care package that leaves him relatively stress free.

     

    It was a relief to find out about CVS.

     

    Nellie xx

     

     

  13. Posted · Report reply

    I would have a word with the GP, he should be able to find a special needs dentist.

     

    It's worth trying one of these. Collis-Curve toothbrush - A curved toothbrush which has been found to be suitable for individuals who normally have difficulty brushing their teeth. You could try googling it.

     

    Good Luck.

     

    Nellie xx

  14. Posted · Report reply

    Hi Skye :)

     

    My sons are 28 and 30! Crikes, it looks worse when I write it down!

     

    If I had my time again, knowing what I know now, I would not send my sons to school. There would be one condition though............I would have to have support, I know it wouldn't be possible for me to have done it 24/7 without some help.

     

    Good luck with whatever you decide.

     

    Nellie xx

  15. Posted · Report reply

    Great to have you both back :thumbs:

     

    Baggers, so sorry to hear things haven't been good, I hope things are back on an even keel or at least getting there.

     

    Nellie >:D<<'> >:D<<'>

     

     

     

     

  16. Posted · Report reply

    Thanks for this Karen :thumbs:

     

    I think this is a great idea!

     

    Carers can have some serious issues with their health.

     

    Some of the reasons carers neglect their health include:

     

    They can’t afford the time to be ill

    Their health is a low prority

    Issues with health professionals regarding themselves or the person they care for

    Not recognising their own health problems

    Stress illness

     

    Carers Health:

    http://www.carersinformation.org.uk/docs5....l?dt=115&zz

     

     

    I haven't been to the GP since 2004 but got a wake up call this week when I visited the doctor with vertigo caused by an ear infection.

    I was supposed to make an appointment in 2004 to have my blood pressure checked as it had been high, it’s now very high.

    I have a family history of high blood pressure, high cholesterol and heart desease. I'm 62 and care for 4 people.

     

     

     

    Nellie xx

     

     

     

     

  21. Posted · Report reply

    I'm so sorry you are having these problems. >:D<<'> Bullying is never acceptable.

     

    The following links on bullying give information and advice, I hope they are helpful. Good luck!

     

    NAS - Bullying

    http://www.nas.org.uk/nas/jsp/polopoly.jsp...068&a=10835

     

    ACE - Booklet on tackling bullying

    http://www.ace-ed.org.uk/advice/booklets/Bullying.html

     

    Bullying UK

    http://www.bullying.co.uk/?gclid=CMSoufOywYgCFRMOZwodOFZDAQ

     

     

    Nellie xx

  22. Posted · Report reply

    Hi Teresa,

     

    My son filled the form on his own, he ignored the parts that didn't apply and gave some explanations where necessary. I used this information to fill in his DLA and enclosed his completed form. We also gave the GP a copy of the DLA with the completed supplementary form. It helped him understand my sons difficulties.

     

    I gained a greater understanding of my sons needs by using this form. He's recently completed the form for a second time when re-applying for DLA. It was wonderful to see the progress he has made when we compared it with his first one. :thumbs:

     

    Nellie xx

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