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Hi,i haven't been on here for a while but i am confused and would like some thoughts..... I have a severely autistic boy of nearly 15-non verbal apart from sonme echolalia.He goes to a special school .He has a "green " room which is used for transitions -in between different tasks-which he can get out of(so i'm told-there are 2 flat d-ring locks inside the door),is padded and has sensory toys inside.There is also a "quiet" room leading off the classroom which is bare(not padded)which is used if it is felt my son is a threat to others and if he lashes out. He has become more aggressive recently and less happy to go to school,also more withdrawn.I have written in his book that i feel so9 much use of the "quiet"room could be adding to his aggression as he is lashing out as he can't communicate his feelings-then put in his "room",comimg out to lash out again,and so on. I would appreciate any thoughts /guidance on this. Thanks so much.

hi -didnt catch programme but will try to now as i can agree with what you have said about meds-as i feel as i was put in the position of having to try meds for my boy as school couldnt cope with him(opposite of mum you quoted from programme). he is off them again ,now,as developed severe dystonic jerks-and i can honestly say ,iam relieved ,as he is no different at all at home with no meds- it is his anxiety at school that poses the "need" for them.he is also fine at his respite day centre,where he will even attempt going in a canoe and rock climbing!of course,medsmight be the answer and help in some situations when all else has been tried -but ,with my son ,i dont feel its the way forward .

hi kkaren-dont think i did get last reply-hopefully arapiprazole will be a success for your matt .medications are a worry tho due to the side effects-i think my joe must be susceptible as this is the second med that has caused jerks- even on a small dose.still on 0.25ml at the moment and jerks have stopped-remains to be seen whether anxiety will be alleviated on the smaller dose .J

hi denise- have been reading all your posts with interest- such an uplifting story! my son is 13 and is suffering extreme anxiety at school . camhs are involved and have worked with the school ,who, in their defence have done loads to try to address the problem. They have allocated a male one to one ,provided him with a chill out room ,and built lots of physical activity into his timetable. As there was still anxiety he has been prescribed risperdal,1ml, which worked a dream for a month, then he developed severe muscle jerks, The psych.reduced to 0.25 ml-the jeks have mostly gone now[happily]butthe anxiety and subsequent aggression at school has returned.He isnt aggressive at home,where his anxiety is obviously reduced.I might also mention that he is now doubly incontinent,when he had been continent since age 5!i work part time ,but keep toying with the idea of giving up work and going the same rote as yourself- but it is so scary.I too,am fed up with every moring facing the prospect of another days full of bad tales about my son. I forgot to say that this was the 2nd med that has been tried,both with same side effect.any thoughts and advice would be SO appreciated -thanks

hi- yes , my son has just been given it again and i was told the same thing. think maybe a break from it increases its efficiency?

hi karen-not really- as joes anxiety is worse at school and theysaw no difference.joe also gets aggressive due to his anxiety-as i said,at school, and in outdoor situations where there are lots of people,noise,etc.took him to emergency doctor at camhs when his jerks got really bad -hence reduction in risperdal . doc said he needs lots of physical activity -which i can agree with -but parks etc are no good as there are obviously other children(vulnerableones too)which stresses him out.did you find the anxiety got worse with onset of puberty?

hi karen- my 13 yr old had this prescribed-1ml daily -but had to comeoff it due to muscle jerks . he is now on risperdal, but has just had this reduced from 1ml to 0.25ml daily for the same reason . he ,too, is extremely anxious, but the muscle jerks have made him even more so! i too would like some thoughts on medication from any others here who have been in similar situation

hi has anyone else on here had experience with involuntary muscle spasms-like electric shocks? joe ,13, is on 1ml risperdal daily . he started to have "twitches" before the meds were started- he has been on them a month and everything was great until a few days ago when they have definately worsened.when he gets them he gets angry and can lash out. so worried- any thoughts please?

hi again - have appt to see camhs doctor next week about meds. my son desperately needs help with his anxiety and as i said before- abilify wasnt a success. he is underweight so perhaps weight gain wont be so much of a problem - it is so worrying . are there any other alternatives ,does anyone know??

hi- my 13 yr old son was on this for a short while but had to be taken off it as he developed muscle jerks(dont want to scare you ,as everyones different)- however when we stopped it we noticed how much brighter he was again. he too has asd ,depression and high anxiety- doctor bis now going to try risperidone!!!

hi-i agree with tally and lyndon- my boy is on the slow release melatonin 2mg-i have to crush them . i was told that tho not ideal- it only prevents the slow release from working but wont do any harm. seems to work ok for him anyway .

thanks again for reply. i have to admit i am a bit naive about the schools obligations as,up to now, have put my trust in them.Just dug out j statement ,and section 4 quotes "a special school for pupils wiyh severe learning difficulties" in section 3 , it highlights the need for TEACHH.The class he was in formerly WAS a TEACHH class and the teacher really knew her stuff. the class he is in now obviously caters for the rest as a whole -tho have set up a separate desk for him which he seems not to use a lot as he uses his "quiet room" a LOT during the day .i feel helpless, as obviously cant see whats going on in the day to raise his anxiety. the quiet room is another issue.....he has started to tear his clothes on a daily basis - again something not encountered at home. also ,stripped off once and was tearing his pad . this is all very worrying

thanks sally - think you may well have hit the nail on the head about his class setting.the class he is in now is predominantly downs syndrome -very different needs to j.i have asked about him being moved back to the autism class but the space has been filled with a more severly autistic child- and told that j is more able. i think the problem is that he is probably somewhere in the middle. he was originally moved from the original class as there were more violent behaviours in the class that j was nervous of- now the alternative is a class that is not suited to him and that are finding it hard to deal with him-and that are turning him into an aggressive boy which he most certainly is not . its anxiety and unhappiness at the root of it.my son,like yours cant say what is upsetting him, can only demonstrate it in other ways which they are interpreting as aggression. nothing has changed in his statement. but thanks for pointing that out,as have review coming up and i will say they are not meeting his needs and keeping hin in a class where he is not suited.this behaviour deterioration and also incontinence started when he went into this class .i think you may be right and the reason for not moving him back is more to do with there being no room now ,rather than his capabilities. he has been to respite today and has had a wonderful time there- everything points to there being a problem with the school. thanks so much for your help .

hi baddad- so much to reply to-thanks! first -when i say relaxed i mean in my manner towards himreally -and perhaps i didnt come over clearly about the autism bit as i see j as j -but obviously have to consider his hypersensitivity to certain stimulii and his anxiety levels which are a result of his autism. in fact that is what frustrates me about the school treating the autism rather than the child , in my opinion.i very rarely see aggression at home asthings seem to tick along quite nicely- and it is nipped in the budbefore it reaches the point of no return! on occasions it has happened( incidentally before school) j is directed to his room to calm down and it might seem simple, but s stern tone from me works wonders! i also try to give him the opportunity to make choices as much as i can and to achieve the best level of independence he can-he likes to sit away from me on a bus and is fine( under strict instructions to behave properly!) if we go into a shop - i will tell him to squeeze if it gets too much . i suppose thats making concessions but find it works for me to try to pre- empt a situation rather than let it escalate. however,if all else fails,as i said,a stern voice will work provided its done at the right time . schoolIS DIFFERENT -and that is where it gets difficult . unfortunately ,as j HAS lashed out, he is 2-1 ,which is probably not helping the anxiety. again, at home,his dad and i have always dealt with anything singly as feel that 2 p eople is intimidating. however, school is looking into resolving this by getting a single(male) member of staff for him .i dont think its boundries at school that is causing the aggression -rather too many demands that he cant cope with due to high anxiety levels- as he accepts boundaries at home withoutn aggression. thanks for your input

hi jeanneA- thanks for your reply. as i said in earlier post -dont want to go down residential route as yet - but a change of school has been in back of my mind for a while.as you have experienced - it is distressing to see your son portrayed as a different person that you know at home- oh, to be a fly on the wall sometimes!

hi mel- this has started in the last year since moving up a class. the problem is ,i think ,that he was moved away from his earlier class as ,although severely affected by autism , is also definately not "in his own world" and so was moved into a class with children ,not with asd,but other disabilities. j is usually described as "very complex"! however ,he cant cope with the sameclass routines as the others (group sessions etc) ,and so has his own timetable and LOTS of quiet room sessions - which although is a good thing for him to calm down etc.,is a shame as well, asj shows signs of really wanting to socialise-n he just finds it hard .school review coming up soon so have to think very carefully about maybe a change in school- tho this is pretty daunting:{ residential definately not an option for me - recognise it is best for some but dont want to go down that road as yet

hi oxgirl...thanks so much for quick reply as feel so gutted when you said about your son ,i thought about the other day when i collectesd my son from school taxi-he ran towards me ,and the escort shouted to me to be careful as he had had a bad day -only for j to throw his arms around me for a cuddle and a piggy-back ! they EXPECT him to be aggressive nowand the poor boy cant move unless he is shadowed by 2 members of staff.the quiet room he uses has nothing in it at all- i suggested sensory things but they were removed as were torn- but the consequence of this is that he tears his clothes nearly evrey day and has stripped off anf torn his pad into shreds- none of which happens at home. i think this is a result of boredom.i get the feeling that the school disapprove of myrelaxed attitude with him- i treat him as j who has autism ,but still j,wheras they are treating him as a text book case of autism and not as a sometimes frightened and confused little boy.however ,this is his hime and sanctuary and here he is loving and happy .i work as part ofhis school but on another site-and because of this i probably get more feedback about the problems than another parent but am finding it all very upsetting and worrying at the moment.thanks again

hi everyone...could do with some advice please? my son j is13 and severely autistic ,although with good understanding ,unless stressed.in the past year ,things have been getting steadily worse at school regarding his behaviour.he has become incontinent again and is lashing out at school.camhs have become involved and a caf report has been completed. he has been supplied witha quiet room for transitional periods and usually is 2-1 with staffing ,although school is looking to get a single male member of staff for hin.he has aquired a label of "aggressive" and is treated as such. at home things are much different....... he still has up and down times, but is a happy boy,affectionate.responsive to requests made of him ,and allowed[within his capabilities]to have some independence and make choices. an o.t. has just come round to see j and myself, and remarked how relaxed i am with him and in the way i speak to him.i realise that this is a "double ended sword" as this is almost definately not helping with how he is in school- where it seems to be the other extreme and he is not given freedom of movement at all.what is the answ3er??i am usually confident with the raising of my lovely son....but just want to do whats best for him!!!

i know how you feelas i was up in the night worrying about my issue last week - i had to think that it was a good thing i saw it as really you should be able to walk into a childs school at any time and know the staff are doing what they are supposed to.in other words if you feel he is not being supported as he should be it is your right to say without fear of repercussions. this is what i have had to think anyway -hope this helps! have you got a permenent contract?

hi flash- i work in same school as my son - a small special needs school. no probs with the 2 roles colliding really until recently when my sons behaviour and anxiety has gone through the roof.i am in a different part of the site so that is not a problem but however, recently have had to complain to the head and teacher about something i had an issue with.i also had to ontact camhs about the same thing. this was not something i saw whilst working but when i collected him from school . i dont know what advice to give other than your job shouldnt be affected as surely you would be raising the issues you are concerned about as a parent anyway .however i know it is a difficult situation .

hi -glad all went well- mine did too :Djoe had his charming head on! wont see her for a year as she says home is fine- all we need now is for school to get their act together! keep smiling!

yes -totally agree with the"conforming " bit -have had to grit my teeth so many times at the lack of true understanding andEMPATHY that so many people have -in fact the camhs lady is like a breath of fresh air but wheher that is enough remains to be seen.as he is in a class with other children who do not have the same disability as him he is seen as a problem and is presently 2-1 as he has lashed out at staff only because he of the demands being made on him that he cant cope with. i think this is making things worse as too many people around him makes him more anxious of course.SO INFURIATING! WHY is conforming so important when a childs mental health and happiness is at stake? so many blinkered ,narrow minded people!!!