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Need advice about son's behaviour

zoe1983zoe1983 Posts: 7Member Listener
edited October 2016 in Parents and carers
Hi my name is Zoe I have 3 children one who has servely disabled , he is 13 , I had a 9year old who I have problems with .he as melts down a lot so hypo , as to follow routine ,even with food we have to use a food menu other wise he doesn't eat , doesn't like getting showered ,I have to get him washed dressed you name it . He doesn't see danger he just started hurting me , he doesn't normally go round hurting people unless he been bullied by a person he will take so much of them then he will flip and really hurt then. He doesn't like goin out ,he only plays with children with special needs .he lines his toys in his room ,and like his hide outs , he messes himself ,doesn't like crowded places , carnt trust teachers at school so he doesn't ask them anything . His dinner as to be not touching on his plate . Doesn't sleep ,can anyone help me please . 

Replies

  • abstractLucasabstractLucas Posts: 79Member Connected
    Hi Zoe,
    Sounds like things are really tough at the moment - have you considered approaching your local disabled children's social care team for support?  They might have some ideas of places you could take your boys that wouldn't be too overwhelming for them?  You could try googling for your local carers support centre too - they might offer the chance to chat face to face with someone so you can blow off some steam, and they often have loads of local knowledge that could come in handy.  There's always the Scope helpline too - maybe talking things through might help you get some ideas about new things to try?
    I don't know if any of that will be any help but I hope maybe some little part of it will.  I hope you get a chance to chat things through, and it sounds like you really need to give yourself credit for keeping things together as well as you have!
    Good luck
    Lucas
  • winterrose98winterrose98 Posts: 9Member Listener
    Hi Zoe, I have an autistic child and what your describing sounds like her.  If you don't want to approach the school regarding your child  I would go to your GP and tell them everything you wrote in your post as  I'm sure this would ring alarm bells to them.
    You need support as having two disabled children is very hard and tiring and at times lonely.
     I champion the carers centres as they are a great support network.  Sometimes religious organisations  can help also depending on the support you need as in someone to talk to , share your problems with etc or in the form of disabled clubs that your children can access and you can have a cuppa and have a chill moment with other parents in the same boat as yourself. There are also online communities who can advise you on certain matters.
     The most important thing is to keep well yourself, don't isolate yourself.Your not alone sweetheart there are many people in the same situation with their solutions to their problems that you can adapt yourself to suit your situation.  Try the GP first of all and go from there. Good luck.
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  • Yiman60Yiman60 Posts: 95Member Connected
    edited October 2016
    zoe1983 said:
    Hi my name is Zoe I have 3 children one who has servely disabled , he is 13 , I had a 9year old who I have problems with .he as melts down a lot so hypo , as to follow routine ,even with food we have to use a food menu other wise he doesn't eat , doesn't like getting showered ,I have to get him washed dressed you name it . He doesn't see danger he just started hurting me , he doesn't normally go round hurting people unless he been bullied by a person he will take so much of them then he will flip and really hurt then. He doesn't like goin out ,he only plays with children with special needs .he lines his toys in his room ,and like his hide outs , he messes himself ,doesn't like crowded places , carnt trust teachers at school so he doesn't ask them anything . His dinner as to be not touching on his plate . Doesn't sleep ,can anyone help me please . 
    Hi,
    Your son is showing blatant signs of Asbergers Syndrome. Eating can be a major problem, one of mine is exactly the same.

    http://network.autism.org.uk/sites/default/files/ckfinder/files/Eating issues Dr gould.pdf
    http://pdaposterchild.blogspot.co.uk/2016/06/pda-and-food-issues.html

    This is a really interesting article about food and Autism Spectrum. Most folks on the Spectrum have issues with sleeping. 
    Toilet training is also an issue. Not being able to deal with bullying is another issue. One of mine had this problem. No sense of danger , all blatant signs. 
    What you have to do is to go to your GP and get a referral to CAMHS . There are lots of other issues associated like , ADD, ADHD, look also for the co Morbid like Dyslexia, Dyspraxia , Dyscalculia. Irlen Syndrome Epilepsy, Tourette's etc.. I am trying to get a diagnosis of PDA which is Pathological Demand Avoidance Syndrome. Look on the PDA Society website there is a questionnaire, see if it rings any bells. 
    PlanetAutism has a brilliant FB page with lots of links. She also does a blog page. On that there is information pages which gives you loads of information. Ignore the eye contact part , that's irrelevant.
    Compile a family history, who has what on the co Morbid side going back to Grandparents. Even if they were not diagnosed look for the symptoms.
    You need to get your GP to refer your son to CAMHS for assesment. Make sure the support goes in straight away as the biggest issue is anxiety. 
    If you check out your nearest Carers branch you can ask for an assesment of your needs and your child's. You might be entitled to respite and extra funding for support.
    If you live in England these folks will help with what you are entitled to as School support.

    https://www.ipsea.org.uk/

    Scotland it's called Enquire.
     National Autistic Society also have a good website with lots of information.
    Hope this helps xx

  • zoe1983zoe1983 Posts: 7Member Listener
    Hi his docs send a letter to camhs but they turned him down they wouldn't see him . Because he gd in school because he sticks to there routine 
  • Yiman60Yiman60 Posts: 95Member Connected
    edited October 2016
    Utter rubbish . Typical of clueless CAMHS. Get back onto your GP and tell them to follow NICE guidelines.

    https://blogs.shu.ac.uk/autism/2014/11/18/good-behaviour-at-school-not-so-good-at-home/

    http://www.smarttalkersblog.com/2016/06/the-delayed-effect-of-anxiety-on.html?m=1

    http://evolutian.wixsite.com/planetautism/infofactsheets

    This behaviour is called masking . 

    http://evolutian.wixsite.com/planetautism/your-autism-rights

    Scroll down to the children section , you have rights, you are entitled to a referral.

    Also ring ipsea and get the information about what you are entitled to in school. The learning support teachers I dealt with did not even know the basics of Autism Spectrum. 

    Dont take NO for an answer.
  • Yiman60Yiman60 Posts: 95Member Connected
    edited October 2016
    zoe1983 said:
    Hi his docs send a letter to camhs but they turned him down they wouldn't see him . Because he gd in school because he sticks to there routine 
    https://www.ambitiousaboutautism.org.uk/understanding-autism/health/hygiene

    Personal hygiene can be an issue in Autism Spectrum

    One of mine needed help with dressing , had to put everything out for him. He had a routine of a morning and refused to budge from it. I was totally ignored by the school.

    Lining his toys up in rows, likes the safety of home, The den situation shows it reduces his sensory overload , His dislike of busy places.

    For goodness sake has your GP had any training in Autism Spectrum . It's available to him. Make sure this time he puts all the facts in for the referral.If he did send a detailed letter to CAMHS  show him the BMJ letter.

    Your sons social behaviour , not knowing how to deal with bullying, frightened to ask the teacher, playing with special needs children , he will have an empathy with these children and it will be easier for him to play with them because of his lack of social skills.

    When Consultants write letters like this in the British Medical Journal something is drastically wrong. It's like a Post Code Lottery getting support.

    http://www.bmj.com/content/353/bmj.i3199/rr-0

    Make sure you dont leave that surgery without a referral. Get a friend or relative to go with you to fight your case.

    http://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/carers-assessment?gclid=CjwKEAjw7ZHABRCTr_DV4_ejvgQSJACr-Ycwip4cuKdlNDArMwz9ZLuREtis9CJabBLDDwaBjQKgFRoClCnw_wcB

    Ring these folks and get an assesment of all your families needs. You are entitled to this and they should provide you with links where to access support and help.

    Autism is a neurodevelopmental illness if the support is not provided then it causes mental health issues like severe anxiety, meltdowns, depression, self harming, food issues like anorexia. 1 in 4 are now believed to be on the Spectrum. Boys are affected more than girls.

    You are doing an amazing job as a Mum, but you must now fight to get that support for all of you. . Xxxx


  • zoe1983zoe1983 Posts: 7Member Listener
    Hi everyone sorry not been back on for ages things have got worse , no one wants to no about my son , but I now have school nurse as well she said my son sounds like he Asperger syndrome and autism just need to get him sorted with docs now m he is turning violent tho. Really bad .......he can not control his feelings I have just been rewarded dla for him as well. 
  • Yiman60Yiman60 Posts: 95Member Connected
    zoe1983 said:
    Hi everyone sorry not been back on for ages things have got worse , no one wants to no about my son , but I now have school nurse as well she said my son sounds like he Asperger syndrome and autism just need to get him sorted with docs now m he is turning violent tho. Really bad .......he can not control his feelings I have just been rewarded dla for him as well. 
    I am so sorry to hear about your situation.
    These outbursts are meltdowns . It's the anxiety going off scale to a sensory overload. There is a lot of advise out there how to deal with the situation. Get the school to listen to your situation. Get an emergency meeting with the Guidance and Learning Support team include this nurse.

    Make sure they check for PDA as well. The Stratagies for PDA are different , normal Autism Stratagies don't work.

    pleased to hear about the DLA.

    You are doing a fantastic job , hang on in there, keep pushing them till you get that referral.
  • Yiman60Yiman60 Posts: 95Member Connected
    edited December 2016
    zoe1983 said:
    Hi everyone sorry not been back on for ages things have got worse , no one wants to no about my son , but I now have school nurse as well she said my son sounds like he Asperger syndrome and autism just need to get him sorted with docs now m he is turning violent tho. Really bad .......he can not control his feelings I have just been rewarded dla for him as well. 
    http://www.pdasociety.org.uk/

    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    There is a Petition going through the Scottish Parliament to Spread awareness of PDA and get if formally recognised. Once it's recognised in Scotland that would set the precedent for the rest of the UK.

    Make sure you read the Questionnaire on the PDA site. Often it's diagnosed as ADHD or attachment disorder.

    My children have both Asbergers and PDA.

    Dont forget you can ask at schoool for an assesment of his needs. Get the ball rolling that way. Show the school nurse and School the website, most people have never heard of it before. There is a section for parents and professionals including teachers.

    Good luck xx

    https://www.ambitiousaboutautism.org.uk/understanding-autism/behaviour/meltdowns


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  • Yiman60Yiman60 Posts: 95Member Connected
    edited December 2016
    A referral to someone with specialist experience in Autism Spectrum or someone like Children's First I am sure would help.There are techniques that can be learnt .

    Its getting someone who listens and understands is the biggest barrier to overcome. 

    I hope the school is working with you to get the help and support you need.
  • zoe1983zoe1983 Posts: 7Member Listener
    Thank you Danny school arnt helping at all just because he gd there apart from he doesn't speak to them or tell them anything he as learning problems. As well 
  • Yiman60Yiman60 Posts: 95Member Connected
    edited December 2016
    zoe1983 said:
    Thank you Danny school arnt helping at all just because he gd there apart from he doesn't speak to them or tell them anything he as learning problems. As well 
    This is one of the issues called " Masking" . It would be much better if he had an advocate to help him. 

    You need to get the help of your local MSP onboard . I have a friend with similar problems like yours and after she got nowhere with the school her MSP acted on her behalf and hers sons Additional needs assistant has doubled from previous.

    Have you asked is there such a person as a family support worker who can work with you?


    https://www.ipsea.org.uk/contact/advice-and-support/advice-line

    You should also book book an appointment with iipsea . They can help with advise and support .

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