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HELP! I don't know how to deal with ds's behaviour or what it means. Possible ASD?

26 replies

sasquatch · 31/07/2007 21:02

I don't know whether to post this on SN but ds 12 is on the waiting list for assessment for ASD/ADHD. I feel that I've just been so awful to him, and am confused about his behaviour. This evening he gave me a fine example of his refusing to try and do anything that he thinks he cant do perfectly, and he avoids it by crying, getting angry with himself, storming off,hitting himself. I dont know if he does this as an elaborate technique to avoid things he doesn't want to do, or what it means. It is because he is now on waiting list that I look at his eccentric behaviour as something he possibly can't help, and feel guilty about telling him to "pull himself together", or not doing something earlier. I don't always do this but have tonight and think I have hurt him again.

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Niecie · 01/08/2007 01:42

hi sasquatch - I don't have any answers but I just wanted to know exactly how you feel. My son (7) has been diagnosed as having mild AS and does exactly the same thing. He too refuses to try anything new and really works himself up in to quite a state. I have to admit it one of the things about the AS that I find really difficult to deal with - I don't really care if he succeeds or not so long as he has had a go but I do care that he gives in so easily.

I know that it can make me feel guilty too when I snap at him but, on the other hand, it can have the desired effect and he does try something and achieves more than he thinks he can. I don't know about your son, but my ds has coordination problems which I believe are quite common in those with AS. We went to the park today and they had a rope ladder climbing frame that he wanted to get up so he could come down on a slide. He cried and made such a fuss saying he was stuck and couldn't do it but children 2 or 3 years younger than him were managing so I made him carry on, showed him where to put his feet and whatnot and eventually he did it. Once he had worked out a way of doing it he was fine, despite him shouting that he would never get it.

I think my point is that you can't always let them get away with giving up. They may have a disorder but it doesn't mean that they can't grow and develop. Sometimes it can be so wearing to put up with their avoiding tactics that it isn't a surprising that we snap and maybe don't encourage them in a very positive way but we are only human too.

I hope you don't mind me asking but as your son is 12 and still not diagnosed is that because he isn't too badly affected too? What sort of things make you think he has AS? I don't think my DS would have been diagnosed so quickly if it weren't for the fact that he tends to pace the floor and start flapping when he is overstimulate, bored or tired. He appears pretty normal to most people (except maybe those people at the park today) but the flapping and pacing gives it away, although mostly he does it at home.

Don't beat yourself up about this. I am sure that you are doing a great job. I hope you get some sort of diagnosis soon - it will give you some idea what you need to do to help and what can be achieved.

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sasquatch · 01/08/2007 18:18

Thanks niecie, for getting back. I didn't know the avoiding new things was an AS typical thing, is it? My ds has also always struggled with coordination and we were sewing on name tapes when he had yesterdays meltdown, actually I had just suggested we do it, but I know he can do an adequate job if he just tried, and he did, but made himself feel very negative about the whole thing. As you say it can be wearing and I suppose I am feeling tired of it after 12 years, as a lone parent, and worried as now we are waiting for the assessment, and guilty that maybe I should have done something earlier.
To answer your question about that, I think it is partly because of the type of school, and I was always relaxed about him in earlier years, he was such an engaging child that even though clearly abit uncoordinated I just accepted him, and he was highly verbal quite young. It is only as he got older that social problems started and coupled with him not growing out of things he should have - like mouthing things - and he started having rages in school and the sanctions on that become stronger as they get older that I finally decided to look into it,and that coincided with a supportive teacher. I would love to chat more and just talk to someone who has some experience of this , though of course he doesnt have a diagnosis as yet and may not do. have to go out though now. Thanks again, I'm on a massive guilt trip now thinking I should have done this years ago and if I had understood him better he would have more self esteem.

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kitegirl · 01/08/2007 22:53

sasquatch good luck with the process, it can be very overwhelming and hard work. I have found that the more you educate yourself and the more knowledgeable you are, the easier it is to deal with the system.

Personally - and this is just me, a mum of one son with ASD - if something gets my son worked up into 'quite a state', it's not right. Our children can do lots of things, and cannot/don't want to do lots of things. It's not always 'avoiding tactics', sometimes it's genuine discomfort or even fear. If children 2 or 3 years younger can do something that your son cannot/ doesn't want to, it doesn't necessarily mean anything. Behaviour analysis has techniques with which to deal with problem behaviours, and with consistency behavioural methods do achieve great results (in my experience), but as a parent you might be able to guess the cause for your child's upset/distress. Yes, all children can grow and develop, given the right combination of love and appropriate education. Autism and any form of special needs in your child is a very difficult and wearing reality, and sometimes it gets too much.

If you read about perception and sensory processing in ASD, you might run into some interesting explanations. Google Donna Williams, an autistic author, song writer and artist. Eccentric, and very very extraordinary.

love
kitegirl

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Niecie · 02/08/2007 12:12

sasquatch - sorry not to have got back earlier - having problems with the internet connection.

I was going to ask if you have phoned the psychologist to see when the appointment might be? It sometimes helps and even if you don't get an earlier appoinmtent you might be able to find out where you are in the waiting list. It might even be the case, as happened to us, that he has somehow dropped off the waiting list. DS had to see the OT at school after his diagnosis but didn't see her for ages. In the end I phoned the OT department only to find they thought that he didn't need an appointment any more as they had phoned the school and got no reply and given up. I think they assumed that just because they hadn't heard the appointment wasn't need. That is why I suggest checking he hasn't been lost in the system, if you haven't already done so recently.

Have you seen anybody at all yet? Here we have to go through something called a 'patch team referral' where the child is initially assessed by a paediatrician (after a GP referral) and then they make other referrals as appropriate. I think we saw somebody to test his hearing, an occupational therapist for his poor coordination and motor skills, a speech therapist as he physically had some difficulty saying a few sounds (hearing test was to exclude the possibility that he might not hear them properly when said by others) and of course the psychologist. I think the whole process took 19 months from beginning to end and the psychologist definately took the longest which is a shame as some of the others held back in their opinions as we didn't have a diagnosis.

For us I think the worst things are the poor motor skills because, as you say in your original post they can get so upset about not being able to do things. Could it be that the rages at school are because he is being asked to do things he can't or thinks he can't do? I would say that is why DS is like that at home although, so far he is pretty good at school. I don't worry so much about the social stuff although younger children are more ready to accept those who are a bit different to themselves so we shall have to see if they become a problem in the future.

I am more than happy to chat about this - I must admit I haven't told many people in RL about DS's diagnosis. Not because I am ashamed of him but because people can be very quick to judge and most people just don't understand. I told one person that DS was seeing an OT because of coordination problems - my DS plays with her DD. This person treats DD like a grown up but I was still shocked to hear the DD chasing DS round the playground after school shouting 'you're clumsy, clumsy, clumsy' at him. This was for no reason as he hadn't done anything clumsy - I can only conclude that her mother had told her. Anyway, it has put me off sharing with others in RL.

This is getting a bit long but a book by Tony Attwood called 'Asperger's Syndrome - A Guide to Parents and Professional' is the one recommended several of the professionals so it might be worth a look to see if you recognise your DS in any of the descriptions.

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allthatglisters · 02/08/2007 18:04

Hello Sasquatch

There are probably a lot of us in the same situation of late dx for ASD. My own ds is nearly 11 - has had ed.pysychology assessment at school, and then school asked me to get referral to paediatrician from gp which I did - but GP was cross as said school should have done this! Now he has paed. appt coming up at school (I will also be 'invited'). It's really difficult with these conditions as you get very used to and adapt to their 'ways' and you tend to lose your confidence about objectively looking at the situation. I'm hoping that the plus point of getting a dx at an older age is that ds will be easier to assess.

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aloha · 02/08/2007 18:10

His behaviour is very normal for a child with Aspergers. My ds is five - nearly six - and it can be very frustrating because he will often refuse to try things, or be moved from one task to another. Aspergers children can get very overwhelmed by their fears and anxieties. They can also be perfectionists.
It is very hard not to snap sometimes and I'm sure we all do at times. I certainly do
At school he will literally run away if asked to do something he feels he will fail at or will be too hard or complicated for him. Run right out of the classroom into the nursery and out the other side!

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Niecie · 02/08/2007 18:38

allthatglisters - I am surprised that the GP was cross about being asked to get a referral - we were told all along that it had to come from the GP, even though he has had no other part to play in the process. I think it is because it is a health thing rather than an educational one. I thought that the ed psychs. couldn't do much other devise a programme of therapy. I think he was being a bit unreasonable. Maybe he thought that the ed psych should have told the school nurse who should have done the referral via the GP.

We don't need all this confusion though, do we? There is no way we can know the system and we are only dependent on what we are told.

I still feel like ds has been abandoned a bit. The clinical pyschs. have signed us off and if we have any more worries we have to contact the school and then the whole process of going on the waiting list and trying to see somebody will start all over again, possibly whilst DS is having a bad time of things. I am worried that after your story and sasquatch's that the social problems will get bigger with age and I won't know what to do about them or where to turn for help.

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sasquatch · 02/08/2007 20:16

Thankseveryone, I am having a problem posting! All that glister, yes i agree with you it is difficult, as I am so used to him and have accepted his 'ways', I was thinking that today as he was quacking and doing his noises and rabbiting at me about batman for 20mins without stopping or even noticing if i am listening, Thinks- "this is just him isnt it?". I think this is perhaps the most difficult thing so far.

We saw a clinical psychologist through CAMHS between easter and end of term. She said from what she'd seen she referred us to neurological team for assessment for adhd and asd.We have been seen quickly so far I think, and have been about a month on the list which we were told was 12-16 weeks.
I haven't told anyone in my family, and only one friend.
From what I have read, I see alot of things that he does as being typical of aspergers i think, that I never would have put together, like he cant handle transitions easily, likes to know exactly what is going to happen, hated loud noises as a ypungster, itchy clothes, on and on. i just thought he was a bit eccentric. And I saw all the things as seperate issues rather than a whole picture.

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sasquatch · 02/08/2007 20:20

Can I add, even though I think my GP is great, when I had previously mentioned his unhappiness about feeling not the same as his peers and always being 'different', She brushed it off by saying "but sasquatch, you're different, and he's like you" I'm not sure what I feel about that.

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Niecie · 02/08/2007 20:40

sasquatch - not sure what to make of the GP's comments, either. Bit of a strange thing to say. Do you know her well? I think I would just have laughed and said 'we are all different in our own way aren't we' but I would probably have sat there dumbfounded and disheartened. I am sure she meant no harm though.

Mind you, we think DS is a bit like DH who is a bit of a loner and not a big one for friends. Difference is that DH played a lot of team sports at school which made him socialise a bit. I can't imagine DS being able to do that as he just hasn't the aptitude and ability for sport, unless he takes up running which doesn't have complicated rules and a ball!

Still, I take heart from the fact that DH turned out alright so if DS is like him he should do OK.

Do you have any other children? It is hard if they are your only or first child as you don't know what is 'normal', do you? I used to marvel at DS's ability to spin things as a baby and toddler. Turns out this skill I was so proud of was just typical AS behaviour but I had nobody to compare him to so I didn't know it was odd.

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sasquatch · 02/08/2007 21:06

hello niecie, I love the spinning story.
yes, I do know my GP quite well, and I suppose I hadn't made it clear to her that I was quite concerned about him, so she made a light comment, and I didn't follow it up at the time .
DS is my only child, is yours? I have thought that some of his idiosyncrasies are due to spending a lot of time with adults.
I hardly ever see him now in the company of his peers, because he doesn't have any friends to speak of, though he is very keen to have them.I think he frightens people off. He seems quite jolly about it sometimes and says things like " I know I'm different" in a way that makes me sad, because I know he's putting a brave face on it. He told the psychologist how new people in his class are sat next to him at first, and they like him because he is the only one they know, but after a while, they make a real friend.
It's hard for the boys not to be able to play football,Ds just says "I cant play football", but I must focus on his strengths too, he is a talented artist and dancer, as its not hand-eye coordination it's much easier.
can I say to Allthatglisters, Aloha,Kite, hello and thankyou, and ATG I am glad to know I'm not the only person who's ds is being assessed later. How has it been for you? have you had concerns for a long time?

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Niecie · 03/08/2007 00:27

Hello again. Yes I have another younger son who seems to be OK although he has his moments - sometimes its hard to know what 'normal' is anymore. It's funny I always thought that DS1 was OK as he sort of hit all his developmental milestones, some were spot on, some were almost there but having a second child it makes it more obvious that things weren't quite right.

I think the main reason I picked up on DS1 relatively young is because he went through a lot of upheavals in his life at the age of 3 and it changed his behaviour. DH was off work for 3 months and then went back to work just before DS2 was born, he started preschool, and all through this time and for about 6 months after we were trying to move house and I think it all got a bit much for DS1 - there was a lot of uncertainty. That was when he started pacing and flapping and going off into his own world. We moved back here and ended up with the same HV we had when DS1 was born and she was brilliant. Rather than saying he would settle down and all the odd behaviour was due to the move (as our old HV had said before we moved) she went to observe him at pre-school and then referred him to the paediatrician and the rest is history.

At the moment he has friends but I am already beginning to see that he is not quite keeping up with them. He seems a little immature for his age and the differences are getting bigger and he doesn't seem to know how to talk to them. We live right next to his Infants school and I can see the playground from DS's bedroom so I go and watch him sometimes. He seems OK but sometimes I still see him by himself, pacing the edge of the playground and flapping. His friends will start to notice as he gets older, I am sure, and then things will get more difficult for him. I won't be able to see him next year when he moves to the Juniors - not sure if that is a good or bad thing.

It's lovely that your son is such a good artist and dancer. It is nice to have something tangible to be good at. I wish we could find something similar for DS. He is a bright boy, a really good reader and has a brilliant memory. He is interested history, geography and normal things like his new PS2 but he doesn't have a skill he is good at, something he could use to make friends or just to give him something to be proud off. One teacher suggested the piano as a way of developing his fine motor skills but he isn't keen. And we know the results of trying to force an AS child, don't we

Sorry, I am going on again. It is all so difficult as all these children are quite different and yet seem to have the same problem. It is interesting that your son is going to see a neurologist - we didn't see one of those. Do you know what they expect to do with your son?

At the risk of boring you silly, I have a friend who has a 20 year old son whom she thought had dyspraxia and general learning difficulties. He was bad enough to go to a special school. About 6 months ago they started to get worried as he wasn't walking very well and looked drunk even though he wasn't. He got referred to a neurologist and it was discovered, after 20 years, that he actually has cerebal palsy. Not surprisingly my friend is really shocked as it would have meant a completely different line of therapy and who knows how things might have been. So, it is good that you are seeing the neurologist that to make sure no possibility is missed.

I hope you are still awake. Congratulations if you have made it too the end.

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sasquatch · 03/08/2007 14:50

hi, niecie,
Do you think it seems a bit odd that only after 12 years ds is being assessed? I think on the positive side it indicates that if there is something undiagnosed it must be mild, and he is functioning well as it is. But on the other side the psychologist has seen enough allready to refer him on. Her words were "its not really clear what is going on for ds at the moment" Which I took to mean 'from what I see there is enough to warrant a further look'.
I made a mistake earlier it is called a neuro-developmental team he will see next, if that makes a difference. I think it includes a broad range of therapists including ot, educational psyc. I will have to see...

Ds doesn't flap, but he has always made alot of noises, its like verbal flapping. He also seems young for his age like your ds. His problems socially started about 6 with teasing, bullying, and it became apparent (to me) that he wasn't able to tolerate what is regarded as normal childhood stuff.
He has a very strong sense of injustice and
Friend coming over now, I think I will observe covertly.

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Niecie · 03/08/2007 16:21

Hello again,

No I don't think it odd that he is only being assessed now. As you say, he is probably mildly affected which is good news. I think I only picked up on DS1 so soon as because of his sudden change of behaviour in the face of all the upheaval the poor little thing had to put up with.
I think if it weren't for that we probably only have picked up on his poor motor skills. As it is, I am still not sure what to make of him to be honest. The consultant paediatric clinical psychologist who saw him said he did have a few social communication issues but not enough to justify the label AS. However, we had a final review meeting to which everybody we'd seen was invited. In the end there were only 2 clinical psychs who hadn't met him, the speech therapy manager who hadn't met him and the SENCO from his school plus me and DH. The psychologists and the SALT manager decided between themselves to give him the AS label. We were a bit surprised as was the SENCO but I didn't feel I could challenge it without sounding like I was in denial about his problems which I am really not as I was the one who noticed most of them - DH didn't and the teachers certainly didn't.

So DS isn't aware of the AS label and I don't know what to do about telling him. Presumably your son understands more and the professionals are explaining better what they are doing? DS knows he finds the motor skills harder than other children which is why he sees the OT and the SALT but I would find it hard to explain AS to him when I don't think he knows he is supposedly different from other children. Maybe, like your son, it will come with age. He does seem to always be on the outside with things even though he has friends at the moment. Is that how you are finding things with your son?

The other thing is that apart from the flapping and pacing, most of his problems could relate to dyspraxia which is enough to make any child feel like an outsider and, if everything is such hard work, why they don't like change and new challenges. I suppose the problem is that there is such a huge overlap in all these conditions such as AS, dyspraxia, ADHD and ADD and all the others I can't think of that it is difficult to make a definitive diagnosis especially if your symptons are mild.

So, even though we have a diagnosis I don't feel like we have one as sometimes I am not convinced. I should just count myself lucky that he is so mildly affected and hope that he can have a pretty normal life at the end of it all.

I hope you have a nice afternoon with DS and friends and the weather has cheered up for you like it has here.

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sasquatch · 04/08/2007 18:18

hello,
I've been off in the sun.hope you are getting some too. (sun).
I always thought that if ds had anything to be dx'd it would be dyspraxia because it was gross motor difficulties I primarily saw,that was, slow to walk, not agile, a toddler gait when running, etc. also I remember how he used to walk downstairs putting both feet on each step for ages before he got the idea. but as i have read up I notice lots of things that he does that could overlap (I think). There is a sensory thing,with putting things in his mouth all the time and really messy eater, and slouching/against things like he needs to be touching something all the time, he often leans on me when we are walking down the street.
I wonder if I had done this earlier things would have been different for him?In a way it has been okay for him with some rough patches re.bullying, but he accepted his lack of sporting prowess. But maybe I should have persevered with things he wasnt strong at rather than letting him give up, like you were saying about your ds at the climbing frame.I tended to let him concentrate on his strengths.
At school this year he was suspended for a day and put on a behaviour contract until the end of term because of hitting a girl in the face, and he gets detentions for things that he wouldn't have in earlier years,like repeatedly calling out in class. Recently he got detention for forgetting to go back to his class in break and going out to play instead. He forgets what he is told almost immediately e.g. "go up and get your shoes", he goes up and forgets what he was meant to be doing. Perhaps its not a case of forgetting but not really hearing the instructions iykwim.Does any of this sound like ASD to you? or anything else for that matter?
Now I think he is being punished for things perhaps he can't control that easily and I want to protect him or help him to be understood.Not that I think that rules shouldn't apply to him though.
Have i been a terribly neglectful parent?, too laid back?
Now i think "oh god, he is not going to attain what he could in school academically, because he has all the ideas and talks all the time but cannot organise himself to sit down and do written work, or to answer the questions in the way required of him. He won't do English comprehension because he says the answers are obvious, rather than accepting that he has to imagine the examiner knows nothing.

Sorry i have been going on, but it's so good to offload it. Thanks for listening.

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Niecie · 05/08/2007 09:44

Hello,

I meant to have a look at MN last night but feel asleep in front of the telly - must be old age!

Your son sounds exactly like mine!!! Apart from the fact that he is not good at art and he hasn't been in trouble yet at school all the other things you mention are exactly like DS. Especially annoying in the messy eating and putting things in his mouth which he has only just started doing again. I wouldn't mind but he keeps chewing DS2's stuff.

I say he hasn't been in trouble at school but there was a term in YR1 where he had been in trouble for fighting in the playground a few times. One time I actually witnessed as we live next to the school and although the school didn't really tell him off they said it was 6 of 1 and half a dozen of the other and he should have walked away. From what I saw the other boy, a known trouble maker, had hold of DS who was trying to get away. Makes you wonder how much they really do know. The other thing he got told off for was sticking his tongue out at the teacher, but he had never been able to do that before and I think he was as surprised as she was that he had done it and thought he would see if he could do it again.

If your DS is like mine I suspect that the girl really pushed him before he hit her. I saw it happen after school one day with DS. One of his friends was being particularly spiteful and girly(teasing and saying unkind things) and in the end he couldn't get away so he half pushed, half hit her. Embarrassing as I was talking to her mother at the time but she understood as she knows her daughter was taunting him. Boys have more trouble expressing themselves anyway but our sons can take only so much before they lash out. On the whole DS1 is very tolerant of DS2 who is a real rough and tumble boy but when he has had enough, look out!!!!

My DS doesn't lean on me but if we stand still for more than 30 seconds he is likely to sit down on the floor no matter where we are. It was OK when he was little, people took no notice, but now he is getting bigger he is beginning to stand out in the crowd a bit more and I feel like people think he is a bit odd. I think with all the motorskill problems and general effort they have to make just to fit in AS children get very tired. But it is another of those things I get exasperated about and then remember that I should cut him some slack. I still think though that if he doesn't know he is doing something he needs me to tell him so that he can learn not to do it again. It is just a struggle reminding him so often!!!

I am rambling again! We are off on holiday after lunch today for a week so I probably won't be on MN for a while. We are only going to my BIL/SIL's house in Brighton whilst they are in France for 3 weeks but I won't be able to take my laptop and get an internet connection. It will be good being by the sea though. If you still want to exchange notes when we get back I am more than happy to do so but please don't think I am ignoring you if you if I don't reply this week.

Enjoy the rest of the weekend and have a good week.

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allthatglisters · 05/08/2007 19:56

Hi again Sasquatch

Sorry about not replying for a while - been quite busy. You were asking how long we've had concerns about DS - well from a toddler really. He's also had therapy for speech problems. At home main problem has been his fussiness over food and his resistance to going out or change of any kind. Other things have come and gone - making funny noises, going to bed with a piece of plastic road(!) etc. He lacks social graces and it's particularly apparent when meeting new people.

Anyway, at school, he doesn't cause teachers problems compared to others, so it's only been in the last couple of years that they've started looking at things. Sometimes he seems to be getting on very well and I think they'll tell me nothing is wrong but other times he seems quite abnormal. It's got to the stage where I'm thinking what the hell, I'm going to make use of the services there are available as there's nothing really to lose - what's the worst they can say afterall?

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Soft · 07/08/2007 10:31

Hello i have 2 daughters, 1 eight years old very gentle, good girl but remains in front of the tv almost all day with all sorts of cartoons. The 2nd one 3 years old and is making me miserable. They both stayed with a maid all day and everythins is ok when i returned home in the afternoon the 2nd one will look for any reasons to cry and will cry sometimes up to 1 hour or two. She will cry for anything just for me to look after her. I cannot do my toilet, or anything just take her in my arm which is not easy. Sometimes she cried so much that i become agressive and i know it is not good. Am stress tired and really do not know what to do. Inthe morning she do not want me to go to work she is moody. I sent her to school since 3 months now for 1/2 day but this has not changed the situation. She is jealous both of my elder daugter and her father.

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allthatglisters · 07/08/2007 14:02

Soft,

Have you thought about contacting your health visitor - they will give help and advice for up to five year olds?

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sasquatch · 08/08/2007 18:46

Hello again glisters,niecie,

Good to hear from you again. Glisters I think your outlook is really positive and refreshing, you seem to be taking your ds's assessment as an opportunity, and not worrying about things you cannot control. Apologies if this is a presumptuous interpretation. I am trying to let go of looking for difficulties and seeing them as differences.

Niecie, your son in the playground with the little girl does sound just like ds. he tolerates stuff for a long time and then at a certain point explodes, and hits someone, swears, gets terribly upset and is punished. The kids in his class know he will react so they do it all the more. I have had so many meetings with teachers explaining this, and ds was always expected to learn to deal with his outbursts.
It has mainly eased off as they get older, but his strength is greater and they are worried he could hurt someone. Last year he threw scissors and 'threw' a desk .
Anyway, on a positive note I will tell you we are v.excited as ds is going to camp tomorrow for two weeks! I am so proud and happy that he can do this despite all the knocks he has had at school he is sure of himself and independent to go. Of course I am worried that it is too long, my real worry being he doesn't always tell when he is hurt or ill. E.g age about 3.5 he was pushed and cut his head open on the edge of the sandpit and didnt tell any one, a staff noticed blood about half hour later. Still got the scar
Tonight I have to cut his long, filthy fingernails, ds wont have them cut and screams and will do anything to avoid it as he can't stand the feeling of the end of his fingers touching things ??? Anyone else experienced this?/
Hope you have a good time in Brighton

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allthatglisters · 09/08/2007 09:30

Thank you Sasquatch. Instead of worrying, I am reminding myself that the responsibility of dx lies with the paediatrician, not me! Looking back I should have called in the health visitor when DS was little and at his worst with screaming fits etc. We've been very good at coping and it has masked DS's problems I think.

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aloha · 09/08/2007 09:45

Everything you say sounds very typical of Aspergers Sasquatch. My son is an appallingly messy eater and chews everything, esp clothes. He also leans, touches, sits down, doesn't greet appropriately, is very resistant to some changes (eg going out) uncoordinated, easily tired etc.
I think the important thing about a dx is that you can separate 'bad' behaviour from symptoms of his condition. If his behaviour is a symptom, then treating it as purely voluntary and bad, and punishing, will be pretty useless and the school will need to come up with other strategies.

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sasquatch · 09/08/2007 12:29

Hi,
aloha, yes you are right, I have often thought that his behaviours are involuntary and do accept them myself to a degree, but have been hard on him too as well as the school (guilt). now ds is 12 and going out into the world I think it might be helpful for people he has contact with and himself to have more understanding of what lies behind his ways. As well as myself. If he is dx'd with AS that is? He seems to get by and I would imagine be very mild. How old is your son ? It seems to be hard at this teenish age because he knows he should be doing stuff without me. he gets cross with me for supervising teeth cleaning, but he wears braces and often just dreams off and chews. We go through a lot of toothbrushes. But I feel it is my duty to make sure his teeth dont rot. I think because I repeat instructions so many times he feels nagged.
Glisters I think you are absolutely right again! wise words.
Thanks for all your support I do feel better having talked to others with this experience.

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aloha · 09/08/2007 15:56

Ah, in an ideal world I would never turn into a crazed harpy by my ds's incredibly irritating ways because I know they are part of his Aspergers, but I still do! It's human, and I'm not perfect, so sometimes I just get really annoyed when I have to ask him to do something 100 times or he takes off his trousers when I ask him to take off his shoes! aargh. My ds is five, and also an inveterate chewer of toothbrushes. I suspect he always will be!

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allthatglisters · 09/08/2007 17:24

Thank you again Sasquatch, you are too kind!
Now for a moan! - just been trying to play chess with DS which even though he had nearly won ended in a tantrum when some moves went wrong (I was trying to make it a realistic win for him). Why do I try? He has older siblings who like to play board games etc so we have loads of different games but can hardly ever play them because he wants to join in but can't bear to lose. Our record for start of tears was with monopoly -they started before the first roll of the dice (didn't have the right piece to move or something)! Will he ever be able to lose gracefully? It's not just board games; when you think about it a lot of interaction between children involves games and a competitive element and he won't even let little kids beat him at anything. This is the sort of subtle thing that you tend to forget about when answering the question on the form from the paediatric service 'Is your family life affected?' Well yes it blooming well is!!!

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