Aspergers Advice.

Discussion in 'Health' started by Cheb, 22 September 2006 Social URL.

  1. Cheb

    Cheb Gold Member

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    Anyone with info or advice about Aspergers please share with me.

    My DS has always caused me to worry, lots of his 'funny ways' I've put down to his age and excused him but he's now 10 and I think the penny has recently dropped for me that there's a bit more to his behaviour than just naughtiness and quirkiness.

    He was referred to the school Inclusive Learning Tutor just before the summer hols. I had a real heart to heart with her and described my DS in detail, as I was telling her I didn't voice my thoughts about possible reasons but at the end of my long emotional tiarade I raised my question, that having heard about him from his teacher too, did she think Aspergers may be a possibilty? She didn't allay my fears but confirmed what I already knew that lots pointers were plainly there. I felt quite upset but in other ways relieved as somebody was listening and not telling me it was my imagination or that I was just trying to find excuses for his behaviour or my poor parenting.

    The Counsellor had very little success with forming a relationship with my DS and he has now refused to work with her further. She is keen for us to have a referral for asessment but I don't know if this is the best thing for him. Will a diagnosis be helpful, or just label him as different? What will it achieve?

    He is very bright and if left to work alone is no trouble at all, he finds it very hard though to work or play alongside others. Often this results in him overreacting and becoming aggressive and angry increasingly lately this has led to physical violence. I feel I want to pull him out of school to keep him out of trouble but I know that at some point he will have to live in the real world and will have to learn to cope.

    Not sure waht to do, so I guess my question in the first instance is should I accept the referral and go for an asessment?
     
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  3. lavender

    lavender Silver Member

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    Hi Cheb,
    my only advice to you is as a mother you know him best and if your "gut instinct" tells you something may need addressing then go with it.
    Mt eldest son had " something" not quite right (in my opinion )for 19 years and no one ever really took any notice, this resulted in a very depressed, unhappy, difficult and eventually "self medicating" young man who was so miserable and misunderstood , he turned to drug and alcohol abuse to try to makle sense of himself and the world around him.
    Thankfully we were able to eventually get him a referal to a private psychiatrist( nhs were totally useless and still are!!) and he found out he wasnt mad and wqas infact suffering from OCD and obsessive intusive thought syndrome, from this he has been able to go forward and is now seeing a CBT and is doing really well ( all private, still no help fron nhs!!!).

    Anyway If I had jumped up and down and made more fuss and trusted MY "gut instincts" we may have had this sorted years before, dont be fobbed off, make as much fuss as you need to get things moving for you and your son!!

    Mothers DO know best, go with you instincts they never let you down!!
     
  4. Boobyjood

    Boobyjood Member

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    Hi Cheb,

    I can empathise with you on this one from two angles.

    Professionally, I am an advisory teacher for special educational needs and much of my work involves the assessment of children with suspected autistic spectrum disorders.

    A multi-disciplinary asessment of your son's needs may result in an eventual diagnosis. This won't be an overnight thing and the important factor to remember is that a label will not change your son, his needs will remain the same. What it will do is raise an awareness of his needs which will help others to understand the reasons for his behaviour and that will help the school to plan appropriately for him.

    As a parent, I'm going through the same thought processes with my middle son (12) right now. I worry that I "look for things" in his behaviour because of the job I'm in. I had a long chat with one of my colleagues, an educational psychologist, only yesterday. She reassured me I was not being neurotic or a pushy mum, and that I should make an appointment with the school asap to discuss my concerns.

    I feel she is right, we know our children better than anyone, and our gut instincts can be just as reliable, if not more, than any paediatric or educational assessment. So go with your instincts and feel assured that the assessment process is there to help your son.

    Your son needs to know that everything you do for him is out of love and concern.

    Will he talk to you and open up about his feelings?

    My son finds it very difficult to articulate his emotions, I'm not sure he even knows what's going on in his own head. The school has a team of learning mentors, one of whom I know he may relate to.

    Best of luck with what you decide, and please let me know how things go.

    Hugs,

    JudeX
     
  5. Cheb

    Cheb Gold Member

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    Thank you for your helpful replies, I have summoned to his teacher after school today and plan to have a long chat not just about the latest playground incident but everything else too.

    Although she has only just begun this term with him she did have him in her class a couple of years ago. She has always shown patience and understanding unlike his class taecher last year who, although very nice, just seemed confused by him.

    I know really that I will have to accept the referral as the increasing violence he is demonstrating is very worrying. As I say to my son, if you hit somebody when you're an adult it's assault. He just loses control and over reacts, it used to end up with him screaming and shouting and often still does but now the fists are starting to come out and I know I have to do something.

    I feel fortunate that the school are being supportive, the head teacher has known him since reception and knows he is not a nasty, bad child as he often appears but one who is in need of help. I have a meeting with her next week, at her request, she wants to discuss a games club my son is keen to start up after school and feels it may help him if he has an interest and responsiblities. I think it may be dangerous as if he feels the kids are cheating at the games he organises, he'll shout and make them cry! So we will talk about things then she already knows I have concerns.

    I know what you mean Jude, although you probably feel it more so; due to your profession, but I sometimes think that I'm researching the symptoms and signs then making things up in my head to make him fit the mould. Am I wanting him to be diagnosed in order to excuse the fact that his behaviour is often unacceptable? I find myself judging and asessing almost everything he does, looking for signs that confirm my worries.

    I am sure that if Aspergers is diagnosed, help and support will be there while he is at school. But I worry that I may be closing doors of opportunity for him as an adult. Might it effect his choice of career? Might it make forming a realtionship more difficult? I know these things will be effected whether he has the diagnosis or not as he can obviously only achieve waht he is capable of but might having his 'condition' labelled cause prejudice? Also will his education be as good, he's very, very bright and I would hate for him to taught in a 'special needs' environment where perhaps expectations are not so high and he would not be pushed to his full potential. But I have reservations about him coping in the large secondary school that my daughter attends. I have no idea about these things, this is all very unfamiliar territory for me.

    You are both right though, we should trust our insticts. I am glad that your son has the help he needs Heidi but how terrible that you have had to fight so hard and pay for what should be there.

    Sorry to waffle, but it's good to get it out.
     
  6. AKB

    AKB Full Member

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    Hi Cheb,

    I'm sorry to hear the problems you are having with your son - I know how worrying it can be as my son (now 7) was behaving "badly" according to others when he was just 3. His first year in state school was an absolute nightmare and I was on the verge of a nervous breakdown over it all.

    A lot of the behaviours you describe were/are also exhibited by my son. His co-operative play skills in groups larger than 2 are pretty non-existent, at least now he his going off in a huff rather than hitting out at the other children. He is also very bright - his reading age is almost double his chronological age and his memory and verbal reasoning skills are excellent (too good at times!).

    However his physical skills are poor - he can't tie shoelaces, find buttons/clips etc fiddly despite being excellent on PS2/DS controls which I can't manage at all.

    For the last two and a half years I've been giving him daily supplements of Omega3 oils - EyeQ
    www.equazen.com (altho website seems to be down at the moment - how helpful is that??)
    - and since he has been taking them his behaviour has improved to manageable levels and is now mostly on a par with his contemporaries. If you contact Equazen, the manufacturers, they should send you a free sample for your son to try. The liquid is not the most palatable, it doesn't taste of fish but is still very oily. The tablets are too big for my son to swallow so we now have the EyeQ smooth which he drinks straight or I mix with milk/yogurt etc. If they can't send you a sample of the smooth stuff - send my your address and I'll send you a few of my sticks. Oooh - just seen on their website that they now do EyeQ in strawberry flavour chews so I will definitely be trying them out on him!
    I've stuck to EyeQ even tho it's pricey compared to other oils as the clinical trials they have done with it were very rigourous and the results most compelling. EyeQ was the oil used by Prof Robert Winston in the CHild in Time documentaries too.
    I shop around for best prices as very often Boots/Tesco etc have buy 2 get 3rd free offers on them.

    On a lighter note, Aspergers can be seen in a positive light - lots of genius' are reckoned to have inc. Michaelangelo, Esinstein, Jane Austen, Bill Gates, to name but a few.

    I hope it goes well at your son's school, at least they are talking with you - my concerns were completely dismissed out of hand and my son was just labelled "bad"; this affected his self esteem and he felt he was beyond help and unworthy of love which was heart rending to see in a 5 year old. Luckily the staff changed in the school and he's had 2 further years of excellent teachers and good support from the SEN co-ordinator, so much so he's no longer on her "books" although a watching brief is being kept as he's got 2 new teachers this year and has moved classrooms etc and he is very anxious about any change however small.

    All the very best to you both,
    Ailsa
    xxxx:D
     
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  7. Cheb

    Cheb Gold Member

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    Hi

    Thankyou so much for your advice and understanding and well, just for taking the time to read and reply.

    Meeting with his teacher went well, she just wanted to see me to keep me informed about yesterdays violent playground incident. She's really keen to show a united front so he doesn't get mixed messages. I took the opportunity to explain my worries, she was surprised by my train of thought and doubted I was correct. However we talked some more and reminised about past incidences and she agreed I had a point. Lack of eye contact, feelings of persecution, unable to carry out instructions unless given very very precise details, taking things very literally, huge difficulty working with others, little grasp of others feelings I could go on and on but you get the idea. Anyhow we're going to monitor very carefully who he works alongside and provide structured supervised play at breaks, hopefully we can keep his outbursts to a minimum. I feel it was a very productive meeting.

    Next week I am meeting with the counsellor to talk about the next step, I think we will seek a referral by the school nurse. No idea as yet what the time frame will be for all the procedures, feel like we may be about to climb on a treadmill. Hope conclusions have been reached before he changes schools next September and extra support is in place as I'm already dreading the transition to secondary school. One step at a time eh?

    I have ordered EyeQ, have heard about this helping concentration but didn't consider that it may be helpful for my DS. The website made interesting reading, thank you so much for that. I've gone for the caps as he is usally ok and getting tabs down. I'm so pleased that your son is getting along well, hope he is soon settled in his new classroom and feeling less anxious.
     
  8. debba

    debba debba

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    Hi
    I am a mother of two special needs children one of whom (14) has high functioning ASD(autism spectrum disorder) some people call it aspergers though he has never been officially been diagnosed with this.
    on Tuesday for the first time ever he brought a friend home without asking I know a lot of people out there would be say THATS REALLY CHEEKY AND HOW COULD THEY DO THAT... I HOWEVER ENDED UP PHONING ALL MY FRIENDS AND OPENING A BOTTLE OF CHAMPAGNE.
    A child with aspergrs is different form other children but they can bring you so much joy because things that for other children seem mundane are so special for you. and just remember that
    the man that cracked the enigma code was aspergers. the man that invented the computer was thought to be aspergers
    and most important of all the man that invented microsoft is thought to be aspergers
    autism of which aspergers is a high functioning type includes loads of very very intelligent men and unfortunately alot of train spotters,but you cant have everything.........
    would love to chat more
     
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  9. Cheb

    Cheb Gold Member

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    Thanks Debba, tears in my eyes as I read your post. Seem to have spent a lot of time crying the last few weeks.
     
  10. debba

    debba debba

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    My eldest is violent at times and does quite rightly get into trouble about it.It however is not always fault as other children are very quick at picking out those that are diffrent and in Alastairs case rile him exactly because they know he will get violent and therefore will get into serious trouble...in primary school he was constantly called up in front of the head for beating up other children until they realised that another child who he thought was a friend was telling him to do it and he didnt understand it was wrong.
    He has been suspended from school a couple of times for his violence but if it had not been of his diagnosis he would have been expelled... another child who was caught telling him to hit out was expelled... I t may not help your sons difficulties getting him labelled, but it does ensure that his behaviour is seen in context rather than just being seen as a bad child. Children with ASD can be naughty and can be bad, but just occasionally it is not their fault and the label just ensures that the school make a real effort to find out what is the cause of the problem... being labelled as ASD is better than being labelled delinquent
     
  11. Cheb

    Cheb Gold Member

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    Thanks again Debba, I'm now really sure that we should should go for the assesment, I don't want my DS to be able to get away with violent behaviour but at least we could expect some understanding. Although I have to say his school has always been great and try to get to the bottom of any incident, they seldom judge it on the violence alone. Of course I am doubtful that a large secondary school would be able to be so understanding. The thought of him being unsupervised and free to roam about the school just makes me break out in a sweat as I'm sure he would find himself in trouble on a dialy basis.

    I don't think anyone has told him to be violent he just loses control but when challenged about it he rarely shows remorse and always justifys his actions.

    I gather your son is taught in mainstream school, does he have any extra support?

    I'm off to bed now, hope we can chat again.

    Everyone has really made me feel so much happier with my decision. Just need to talk DH round now as he's very much in denial.

    Thank you all so much.
     
  12. debba

    debba debba

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    yes he does have support and excellent support, in high, since joining high school he has gone from a child needing help to read ( reading age of 7 and needing help with all written assignments to a child asked to join the gifted summer school and a reading age of two years above his actual age.High school has been the best thing that has ever happened except for the bullying, which has been a huge problem because the other kids know hes different and pick on him, and it is then when he flares up. He is going through behavioural modification at the moment , but I dont hold out much hope... .. and I agree with you no violent child should get away with it.. but sometimes the reason for violence should be taken into consideration when setting the punishment.
    I can understand your reluctance to get him tested, I felt the same for a long time, My view is talk to him... If he does have aspergers he will be very intelligent, see what he wants.
     
  13. AKB

    AKB Full Member

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    Hi Cheb,

    I'm so glad your meeting at school went well, I hope it's taken a load off your mind. It sounds like they are a very supportive school and they are prepared to work with you to help your son.
    I thought Debba's post were very heartening - thanks Debba - I don't feel quite so concerned about my son now too.

    My lad doesn't have Aspergers symptoms unlike his friend J who has just been diagnosed. My son is probably more likely to suffer from Passive/Agressive disorder or Oppositional Defiance Disorder. Hopefully he has neither and I'm just worrying for nothing but as I'm on my own with him I find it difficult to get a realistic perspective. As his father had quite marked pyschiatric illnesses, and was sectioned twice in the last 6 months before the conditions lead to his untimely death I get a bit paranoid about mental health issues. I am very frightened of having my son labelled as I'm scared it will have a detrimental effect on his school life but I can see Debba's excellent point about it helping more than hindering.

    Hmmm, decision, decisions, being a parent is so hard at times - I constantly feel like I'm making the wrong decisions!

    All the best, I hope the EyeQ helps.

    Love,
    A
    xxxx:D
     
  14. Cheb

    Cheb Gold Member

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    Hi

    Thanks Debba, as AKB has said, your post is very heartening. I feel we are about to jump on a treadmill that we may never get off so it's really encouraging to hear that there will be a positive point to it and that my son will benefit.

    AKB, make no apology for being 'paranoid' it is perfectly understandable given the family history. Having spoken to people on here and else where I'm firmly convinced that all the help on offer should be viewed positively and grasped with both hands.

    Not sure about talking to my son as I'm sure he will not accept there is anything wrong with him.....he thinks it's the rest of the world who are odd! It will be a tricky conversation when I have to explain the reason for the referral.
     
  15. Cheb

    Cheb Gold Member

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    Evening All

    Met up with the Counsellor yesterday to talk about the next step for my son. This is someone employed in our school; her job title is 'inclusive learning Tutor'; she offers support to children who for various reasons are having a tough time in school and/or home. She works with a child for about 12 weeks 2-3 times each week but is accessible most of the time should they need her. She only has about 5 or 6 children on her caseload at a time and works on a one to one basis with each of them. Unfortunately my DS has refused to work with her, he knows one or two others who have been supported by her and considers them to be naughty children and as he does not put himself in that catagory.......

    She feels like me that Aspergers may be the cause of his difficulties, though would never of course claim to make that diagnosis herself. We chatted about extra support that may be available to ease his transition to secondary school. I have contacted the school nurse who can make a referral to the child development clinic.

    Everything was so certain in my mind now that I am doing the right thing for him and TBH I still feel like that. DH, however is totally opposed; says the worst thing I can do is label him as different. While I am fairly confident that my decision is the right one, I know that his stance is going to create a lot of conflict. He said I should do what I want but feels I am wrong so I'm left with this burden that if all backfires and makes things worse for our son I will be to blame. My DH has many similar personality traits to our son including the quick temper and over reaction to mundane things as did his own father. That raises a question; is DS how he is due to his genes i.e. he has his fathers temperament and not due to Aspergers at all?

    Decided to press on with the referral and tackle each hurdle as we get to it, hopefully DH will take his head out of the sand soon. He won't even discuss things with me now.
     
  16. Cheb

    Cheb Gold Member

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    Feel like a bomb has just dropped, DS has just handed me a letter from school telling me that he has been placed on the Special Educational Needs Register.

    I feel angry that this has been done without any consultation with me. I feel my son is now stigmatised and I'm now doubting my decision to have my son referred re Aspergers, if I feel like this now maybe I don't feel deep down that a 'label' can ever be positive.

    The letter says he's been placed on the register and NOW they invite me to discuss things with them! I'm so angry that this was not done prior to any action. I don't even really understand what it means to be placed on the register. I don't know if it has been discussed with my child. There are many questions I want answering and I'm furious that I have not been given the chance to speak about it until after the event.

    Thanks for listening, rant over.
     
  17. Gen

    Gen Normal

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    oh cheb honey sorry to hear you are so pee'd off.

    have no idea about the register but hope you get it straightened out soon hun!!

    love

    Gen xx
     
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  19. Cheb

    Cheb Gold Member

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    Thanks Gen

    Rant not quite over cos I forgot to say that this letter isn't even addressed to us personally but simply say Parent/Carer of......!!!!!! That the time hasn't even been taken to put our name on the letter makes me even angrier, like it's just a circular not something so personal and sensitive. It's not as if our family are not known at the school, we've had a child there since 1997 and I've always helped out with reading and trips etc so they know my name, at least they flippin' well ought to and if not then look it up!!!!!!!!!!:mad:
     
  20. loopytigger

    loopytigger Regular Member

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    hi nikki

    hi sorry to hear your angry:mad: You may find he needs to be put on the register to be referred to Dr bray and so he can have extra support if he needs it. Bit bad of school not to give you heads up about it though thay might of done it so thay get extra funding.
     
  21. Cheb

    Cheb Gold Member

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    Thanks Kelly,

    I was so upset, I was about to drive round and bend your ear, I know you'll understand and give me pratical advice too. Unfortunately we have 3 extra kids here so it was difficult for me to escape.

    See you later at the gym?
     
  22. loopytigger

    loopytigger Regular Member

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    hi

    :) Are you going to go to salsa tonight then.You no your always welcome to bend my ear about this stuff as i have been there and done that.Sam saw Dr Bray yesterday and she is asking camms team to asses him about the ADHD and she say we already no that he has got autism.I was sort of oh ok:confused: yes i did sort of no.
     
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