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      Depression, Mental Health and Crisis Support   06/04/2017

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jlogan1

is it a control thing?

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jlogan1   

can some one help my daughter is 13 and we are waiting for diagnosis for aspergers,meanwhile she has been off school for a year(she cant cope with people noise etc) she was going 3 x 45 minutes sessions 1-1 last year ,well sometimes, in the special needs unit. this year they have given her 2 x 45 minute sessions,BUT they have given her a new teacher for one session,well that was it said not going end of,new person and not interested,spoke to school who have said she cant have the same old teacher twice a week(due to their timetable,which i understand there are other children) but she then said my dd cant have that sort of conrtol of who she sees,made it sound as though my dd was a control freak and they wouldnt play that game.not fully having diagnosis yet am not up on all aspergers things but made me angry because she is terrified of seeing new people and i didnt think it was to do with controling.please can someone offer any advise?sorry to go on ,only we have the same problem with home education it took them a year to sort ,he came round once( dd dissapeared,although found her in garden)but she has said if he comes back she will run away,so really she is getting no education apart from her 2x45 mins a week so to me we really need to get the teacher issue sorted otherwise we are down to 1 x45 session.right anyone any ideas??? please >:D<<'>

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mariag   

Oh this must be really hard for you. I think what you could do is arrange an appointment with the head of school and write down beforehand your concerns. You will need to calmly tell them you realise that they have organised a timetable already but at the same time your daughter is entitled to an education. Tell them your daughter does not do this to be controlling this is real anxiety for her. She needs to be with someone she trusts already. They may be more receptive but if still struggling then write them a letter and send a copy to the local LA they should listen then.

 

Maria x

 

Have some of these >:D<<'> >:D< >:D<<'> >:D< >:D<<'> >:D< >:D<<'> >:D<

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JsMum   

When my son behaves in a controling power stuggle way its because he isnt coping with a certain situation, he used aviodance tactics, he craves the predictability and continuity of a situation, swapping the teacher and having different people will cause great anxiety, anxiety is the root of the controlling behaviour, the control is a protective method, she cant deal with the changes, if the school had of looked at early transition with this other teacher and made social stories for her to cope with the changes they may of had a better chance, it clearly isnt meeting her needs.

 

Your daughter doesnt need a dx to meet her needs, even in this stage if there is suspision she has aspergers they should still meet those needs, you need to describe spersific difficulties your daughter has, symptoms, signs ect... and put it in writing so your concerns are raised, in the Special Educational needs act to meet a need it has to be a raised concern, that can be by a gp, proffessional and even the parent, which is why in a statement there is a parents concerns section, so if you feel that your daughter has undx Aspergers make sure you make it clear now.

 

 

JsMumxx

 

Edited by JsMum

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baddad   

I think you have to consider both possibilities and work to find a compromise that meets her needs without enabling her to dictate events purely on her own terms. In the same way that (i.e.) some schools may be unwilling to accept that behaviours are not controlling, the opposite can be true of parents/carers who attribute absolutely everything negative their children enact to autism, completely overlooking the reality that it is perfectly normal/natural for children to try and control their environments.

I hope you can find the middle ground and a solution, but IMO a child flatly refusing to even look at what's on offer:

 

well that was it said not going end of,new person and not interested

 

is (a perfectly normal and natural attempt at) controlling behaviour, whether AS or not.

 

Hope that's helpful

 

L&P

 

BD :D

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Cat   
can some one help my daughter is 13 and we are waiting for diagnosis for aspergers,meanwhile she has been off school for a year(she cant cope with people noise etc) she was going 3 x 45 minutes sessions 1-1 last year ,well sometimes, in the special needs unit. this year they have given her 2 x 45 minute sessions,BUT they have given her a new teacher for one session,well that was it said not going end of,new person and not interested,spoke to school who have said she cant have the same old teacher twice a week(due to their timetable,which i understand there are other children) but she then said my dd cant have that sort of conrtol of who she sees,made it sound as though my dd was a control freak and they wouldnt play that game.not fully having diagnosis yet am not up on all aspergers things but made me angry because she is terrified of seeing new people and i didnt think it was to do with controling.please can someone offer any advise?sorry to go on ,only we have the same problem with home education it took them a year to sort ,he came round once( dd dissapeared,although found her in garden)but she has said if he comes back she will run away,so really she is getting no education apart from her 2x45 mins a week so to me we really need to get the teacher issue sorted otherwise we are down to 1 x45 session.right anyone any ideas??? please >:D<<'>

 

My son was 13 by the time he got his official diagnosis and by that time we were in the same position as you. All attempts to get our son back into the system failed and resulted in a second breakdown. I agree with JsMum that children with AS can behaving in a controlling manner when they are having issues coping with certain situations, they do tend to crave predictability and continuity, they find change very difficult to handle and swapping teachers is a change. By the time my son had got to this stage in his education he had been so badly damaged by a system that did not know that he had a form of autism (although we had been raising concerns about him from the age of 3 but that is another story) that everything was just too much for him to cope with. Maybe it would have been different had he been offered some hands on support at the point of diagnosis or even before, because we are really supposed to meet the needs of any child diagnosis or not, but he was never offered that support. All of this happened 11 years ago now and I would like to think that a great deal has changed during that time - I would like to think that but I am not so sure that it has. How long before you know if you are going to have a diagnosis? I ask because if you do get a diagnosis then you and hopefully other professional people can meet with the school and discuss what the diagnosis is and what that can mean to your daughter. 13 years without a diagnosis is a long time and in my opinion school will need to understand that fact and need to be patient. Your daughter is also going to need to trust that they are going to do everything that they can to make things better for her and the trust part will not be easy for her especially if she has had a hard time at school. One of our biggest issues was not knowing enough about the condition and we had to learn very fast. We did not realise just how difficult life at school without support had been for our son and how much of a toll that had taken on his mental health. Many of the professionals we dealt with just saw a boy who had behavioural issue and did not look at the reason behind those issues. That said his behaviour at school had always been very good he stored all of his problems up until he could no longer cope with them.

 

It is very difficult to know how far to push our children. Because I accepted without question that my son had to go back to school I pushed very hard and it was not the right thing to do for him. In the end we decided to home educate, which does not mean turning your home into a school or that you are giving into your child, to give our son the time he needed to self repair and to come to terms with himself as well as facilitate his learning. It turned out to be the right decision for us. Had we had people involved who were happy to make adjustments to accommodate our son or whose attitude with him had helped him to feel that he was safe with them things might have been different but for us home ed was the right choice at that time.

 

Cat

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bid   

It's a very tricky situation, and I agree with aspects of all the posts here...the problem is getting the right balance between support and boundaries :unsure:

 

I think it's worth bearing in mind that even within an autism specific special school none of the children are simply allowed to dictate what they do, although of course staff have a wealth of knowledge and strategies to use.

 

It's very difficult pre-dx I think because it's easy to question yourself. Hope you find the appropriate support you all need >:D<<'>

 

Bid :)

Edited by bid

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I would be hoping that the school would be offering strategies to enable your dd to get used to another teacher (eg: a photo, a social story, a telephone call, meeting the new teacher with the old one, just standing outside the door of the classroom to begin with, then going in to the class for just a few minutes, etc). If she is ever to go to (any) school full-time then she will have to get used to having different teachers (or her old teacher may leave the school), but she will need help to cope with this.

 

Are education welfare helping you?

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JsMum   

 

 

Ok ideas could the new proposed teacher visit her at home, maybe start of with getting to know each other, like said photos, pictures, put together a profile of your daughter, her name, photo, what she likes, dislikes, her qualities ect to give to the teacher or they could do this together as a topic book, could they then visit educational venues together for the 30mins, then when she is ready to short visits to the educational unit, if this was were she was previously it may be somewhere she felt more comfortable and safe, maybe for the first 4 sessions they do games or puzzles, just so they can build up a rapour, if this situation is not done sympathetically and takes into acount her vunrability and emotional state then this could make her dig her heals in even more giving the impression she is in control when really she will possibly feel she doesnt have any control, when I used physical force to get my son in year 6 he would use violence and aggression which only caused the situation to spiral into dangerous consequences, the fact your daughter has said she will run away is a real sign she cant cope with any interaction at the moment, so this has to be done gradually, or her behaviour will become more problemic causing further accusations she is a control freak, even if she is controlling the situation, it is still a behavioural and emotional needs that needs careful management and understanding, pushing a child who has emotional and behavioural needs into a situation they can not deal with will have serious consequences and I know because Ive faced them when forcing my son into something he just was not ready to deal with.

 

So my opinion is to do it slowly, bite size chunks, and if she is quite obvously distressed then go back two paces and then start again, taking it one step at a time, and record her reactions and keep a very detailed diary of the current situation.

 

JsMumxxx

 

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Kathryn   

I agree with the others. It's important for the school to see that your daughter's refusal to see a different teacher is born of fear, and it should not become a power struggle. They need to be aware that she cannot take simple changes in her stride, as other pupils might. If the environment remains the same and the "unknowns" are kept to a minimum she can feel in control of what is obviously quite a stressful situation for her.

 

Obviously it is impractical for her to continue to see just one teacher indefinitely, so introducing someone else is a good idea, but it needs to be done sensitively and carefully. Other people have offered some good strategies, perhaps you can suggest the school try some of them.

 

Are you getting any AS specific support at all? Possibly not if you're awaiting diagnosis. It's tricky if it's just you, as a parent, trying to explain to the school what is going on.

 

K x

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baddad   
I agree with the others. It's important for the school to see that your daughter's refusal to see a different teacher is born of fear, and it should not become a power struggle. They need to be aware that she cannot take simple changes in her stride, as other pupils might. If the environment remains the same and the "unknowns" are kept to a minimum she can feel in control of what is obviously quite a stressful situation for her.

 

Obviously it is impractical for her to continue to see just one teacher indefinitely, so introducing someone else is a good idea, but it needs to be done sensitively and carefully. Other people have offered some good strategies, perhaps you can suggest the school try some of them.

 

Are you getting any AS specific support at all? Possibly not if you're awaiting diagnosis. It's tricky if it's just you, as a parent, trying to explain to the school what is going on.

 

K x

 

Hmmm... I think that should say 'some of the others'... and 'possibly born out of fear'... and that she 'may not be able to take such simple changes in her stride as other pupils might'...

What's that old cliche about 'assumptions'?

Other than that, totally agree about sensible strategies and meeting halfway. :)

 

L&P

 

BD :D

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Kathryn   

No - I'm quite happy with the way I phrased my post, BD. :)

 

Assumptions? I start from the assumption that parents know their own children fairly well. I'm just picking up on the point made by the OP, that her daughter is terrified of seeing new people and has obviously demonstrated that the change is a problem for her.

 

All desire to control one's environment is born of fear, is it not?

 

K x

 

 

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baddad   
No - I'm quite happy with the way I phrased my post, BD. :)

 

Assumptions? I start from the assumption that parents know their own children fairly well. I'm just picking up on the point made by the OP, that her daughter is terrified of seeing new people and has obviously demonstrated that the change is a problem for her.

 

All desire to control one's environment is born of fear, is it not?

 

K x

 

IMO no, not all desires to control one's environment are born of fear. I think it's far more common that people try to control their environments for (perceived or genuine) personal gain. That can be for reassurance, but there are a host of other reasons too, and as many of those reasons will be entirely subjective assumptions are dodgy territory all round.

With the best will in the world - and with no intended comment on the OP herself (or her daughter) - I do not agree (or start) with the assumption that parents necessarily know their children well... again, I think there can be a host of psychological/sociological/personal imperatives that come into play that make any such assumptions potentially dangerous...

But - all that aside, the point i was making was that your own post made some quite definiteassumptions: not much room for 'reasonable doubt' or even reasonable negotiation with definitives like IS born of fear, or CANNOT take simple changes, is there? :unsure:

If you're happy with the way you worded your post that's fine. I'm equally happy with the way I worded mine, but my original post does not express unconditional agreement with the sentiments expressed in your own and I think it's completely reasonable of me to point out that error within your own opening paragraph.

Looking again at the title of the OP, I think it's far more open minded to say 'hmmm...could be' than to rule out that possibility...

 

L&P

 

BD :D

Edited by baddad

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Cat   
Hmmm... I think that should say 'some of the others'... and 'possibly born out of fear'... and that she 'may not be able to take such simple changes in her stride as other pupils might'...

What's that old cliche about 'assumptions'?

L&P

BD :D

 

Forgive me if I am wrong here but were there not some definite assumptions of your own regarding the content of someone else’s post? :huh:

 

Cat

Edited by Cat

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baddad   
Forgive me if I am wrong here but were there not some definite assumptions of your own regarding the content of someone else’s post? :huh:

 

Cat

 

Not that I can spot ( :unsure: ) - but if you point me in the right direction i'll be happy to clarify...

 

:D

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jlogan1   

hi ,thanks for all replies(although feel guilty as getting a bit heated)very dificult with regards to seeing school ,simply because they have a department head who deals with all the things in specail needs unit and just feel if i go higher would be stepping on her toes and last thing i want is to alienate her,BUT,just dont have the guts to tell her that they may have to go round things a different way as feel as though im telling her her job and shes the one that is supposed to be qualifeid,with regards to getting new teacher to come out and see dd ,one my daughter wouldnt agree to ( not that i have suggested it) but had the same thing with home tutor,and school are already acting as though they are going above and beyond with the 2 x 45 minute one-to -one sessions.have to be bit careful about pushing we have had one incident of self harm when she was pushed too much at home,although it was not school related,i tend to walk on eggshells just in case.think will see how go this week,feel slightly better that most people say not a control thing,but borne from anxiety ,being new to all this is very difficult to see what is AS and what is normal teenager.but still think school could be more sympathetic,have a meeting with them at ends of month,luckily the clinical phycologist that dd sees comes as well and helps to get things accross,although have found that things that agreed in meeting are not carried through,was told they would get someone to keep in touch with dd over school hols to keep a link going,nothing!!then when got back i was told that whereas before i sat in school ( i am seen as escape route so dd made sure i was in school) that i cannot come in and must drop her at door ,and then told of new teacher! i think all just too much at once,but will percivere,and see how goes,many thanks. >:D<<'> >:D<<'> just as an added have also noticed that since return to school dd cant deal with noise,as soon as got out of car she said everything really loud and has since for the last week been complaining ,cant deal with tv loud and when siblings make lots of noise gets really angry and upset,has been really bad this last week,any ideas apart from earplugs!! :tearful:

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bid   

Have you tried a timetable for your DD that clearly shows what happens every day? We used to have one on a kitchen cupboard door for my DS...and as an adult with AS I have a monthly timetable myself.

 

A lot of people with ASD find it very difficult to 'place' themselves within time (next week, tomorrow, today, this afternoon, etc) so a timetable helps to give structure to what can feel very chaotic. This can be worsened when anxiety is general running very high.

 

You might find that your DD would benefit from a very clear daily structure and routine especially if she is at home, as it might make her feel more secure. It's worth a try, as it won't make things worse :) You can make this as detailed as you need depending on her difficulties.

 

Apologies if you are already doing this :rolleyes:

 

Bid :)

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jlogan1   

hi thanks ,unfortunately my dd is probably the only one that doesnt fit that,she refuses to have a timetable ,have tried but she refuses to write it down follows what she needs to do in her head,so she has her timetable but doesnt feel the need to put it in writing,so although she will do the same things most days if i try giving her a written one she gets angry,and says no need for it,but saying that i will try never know each day is a new day and things may change!!!but will make it very basic,thanks for help >:D<<'> >:D<<'>

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JsMum   

that i cannot come in and must drop her at door ,and then told of new teacher! i think all just too much at once

 

Absaloutly agree, in the early days in a school that had little understanding in ASDs they expected us to do this with j, all it did for J was make him scared, he didnt know if I was ever going to return to pick him up, he didnt understand the concept of time so wasnt reasured by mum will pick you up at dinner time, he faught and tried to get free when they held him while I did a running escape like a convict on the run from prison officer, when reality was I was running away from my screaming and distressed son who kept on shouting mummy, like he was been tortured, later when I did pick him up he was ten times worse, withdrew, didnt eat, didnt sleep, extream aggression and disruption, more than ever before, he felt abandand by me leaving him at the door, he felt great resentment towards myself, he didnt trust me anymore either, looking back then he was in a dire situation regaurd his special needs been met, he was basically been abused by the schoool, and I was supose to leave him at the door and run, eventually when I had the proof the school were not meeting his needs he left and we both ran together.

 

Sometimes some schools just dont understand the complexities some children have reguarding been placed in an enviroment.

 

Additional idea, for the noise is a pair of builder ear defenders, or ear plugs, or a ipod to drownd out the noises.

 

I personally in my opinion think the stratagie they are suggesting could do more harm, but like you have said you have to try it to show it caused great distress to her.

 

JsMumxx

Edited by JsMum

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JsMum   
hi thanks ,unfortunately my dd is probably the only one that doesnt fit that,she refuses to have a timetable ,have tried but she refuses to write it down follows what she needs to do in her head,so she has her timetable but doesnt feel the need to put it in writing,so although she will do the same things most days if i try giving her a written one she gets angry,and says no need for it,but saying that i will try never know each day is a new day and things may change!!!but will make it very basic,thanks for help >:D<<'> >:D<<'>

 

 

 

We use a visual timetable, very minimal text, it maybe she puts the time table visually in her head using pictures, so when you present a text one its too much information.

 

J does benefit greatly from a visual timetable, so have to recommend one too.

 

When was the last time she had a picture time table.

 

JsMum

 

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bid   
hi thanks ,unfortunately my dd is probably the only one that doesnt fit that,she refuses to have a timetable ,have tried but she refuses to write it down follows what she needs to do in her head,so she has her timetable but doesnt feel the need to put it in writing,so although she will do the same things most days if i try giving her a written one she gets angry,and says no need for it,but saying that i will try never know each day is a new day and things may change!!!but will make it very basic,thanks for help >:D<<'> >:D<<'>

 

I dont think it will work expecting her to make her own timetable. If she's very anti, you could present it as a general family thing to help reinforce the home routine.

 

Bid :)

 

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baddad   

I'm really, really sorry I cant agree with the majority, but hope - given the title of your OP - that you are open to alternative opinions :unsure: I do think you should at least consider whether there might be more to this than 'anxiety'.

From everything you've described your daughter is seeking not only to control her own life but the lives of everyone around her. Having recently developed a hypersensitivity to sound she is asking everyone to 'adjust' their normal behaviours to accommodate her (presumably when she gets upset at the noise made by the TV/siblings her needs are taking precedence?). You constantly walk on eggshells lest she become upset and go into meltdown or self harm. She will not entertain any strategies you or anyone else suggests (timetables/charts/changes in support at school) or try to meet you halfway on anything.

I think ear plugs for hypersensitive hearing are an extremely good idea. If she finds normal volume/sounds diisturbing she will see them as a helpful and necessary strategy, and as (from your first post) the noise sensitivity is one of the biggest issues in school it will help smooth the transition back in to education. The other major problem - the number of people (other students etc) has already been addressed by 1-1 sessions, the only sticking point now being her refusal to cooperate with the change in staffing, which (IMO) seems quite reasonable from the schools POV and even necessary in terms of her developing wider social integration and confidence.

Does you daughter see any of this as a 'problem'? I don't mean in the sense of the emotional impact it has on her but in terms of the impact it has on yourself/others and on her long term educational/personal/social development. If so, what compromises is she prepared to make to help overcome these problems, other than what - I assume (I don't do that very often, but I think this is probably a reasonably safe one) - are legally defined requirments to access some degree of education as represented by the 2x45 min sessions proposed?

I hope you'll appreciate that my views are not intended to judge either you or your daughter and are not 'heated words'. I really do appreciate how difficult these kind of family dynamics are and don't for a minute underestimate the complexities of school refusal. I do, though, think that within those complexities social control can be a major factor, and I further believe that all sides have to accept some degree of compromise to effect a solution. That's not something many 13 year old's will readily acknowledge or accept when it goes against their personal agenda, but I think, in terms of their ongoing emotional wellbeing, it is a fundamental milestone in their development.

 

L&P

 

BD :D

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darky   

I totally understand how difficult a situation this can be. I have been there a number of times, especially with my daughter. She is 10 now and we are slowly getting there but it has been hard work, very hard work and it's taken a long time. In our house we have had to be on top of everything, and be aware of even the slightest thing that could be manipulative or controlling behaviour because if we give her an inch she takes more than a mile and we go backwards. We have had to be very consistant and nip every single episode of controlling behaviour in the bud, and it's taken an extraordinary amount of patience. We don't tend to look at the behaviour at the time, or what is threatened but the impact of allowing the beahviour to control in the future because the threats are pretty much just that, threats and it does escalate if it's not dealt with. The behaviour did get worse for a while before it got better, and there were days when it was tempting to give in for a quiet life or in fear, but I have to say I am glad we have stood firm on things because it's paying off now.

 

Some people think I can seem harsh or strict, but when you have a child that raises the bar every time, we didn't have a choice. Off the top of my head I can give you examples. My girl used to start off by saying she needed the loo to get out of lessons. When that didn't work, she started digging at her skin because it didn't take long for her to work out that a spot of blood took her out of lessons to get cleaned up and a plaster, but then the plaster would distract her and that then became another avoidence/controlling behaviour. The school said they had no choice but to deal with it so we hit a brick wall and she knew it. So in the end we gave the school spray plaster, job done. She is dealt with quickly with no fuss, so no "reward" for this type of behaviour. Some people might argue that maybe there was a reason she wanted out of lessons, and that may have been the case, but in all honesty I think it was just testing the boundries for her to come up with something to get her out. So what happens now is, she has small tasks she has to complete that are written down for her in a timetable she ticks as she goes, and when she has completed the tasks, she is then taken out the class for a break, and hey presto, we have prevented and cured the problem.

 

Another thing she used to do was wake up and find the loudest toy she could bash to wake the whole house up. As soon as she wakes I am up anyway, but no way was I going to make her think that her noisy toy bashing was the reason I was up, so I used to come downstairs and make her wait until she stopped bashing, but that made her tantrum. Tough! It took her a while to figure it out, she would throw things down the stairs, scream, say she was going to kill herself and me, but I stayed calm, ignored it, just calmly reminded her that once she was quiet she could come downstairs, and it took weeks and weeks for her to realise she was the one dictating her own fate and the sooner she calmed down and behaved the sooner she was able to come downstairs.

 

Now all I have to say is you are, you will, you are going to, this is what's going to happen, she might grump for a short time, that's fine, we all grump, she accepts it in the end.

 

It is very difficult to learn what is extremely difficult for them, and what is just child like behaviour. Children who have ASD's do have many difficulties that make it hard for them to do certain things, but at the same time, there are those children who will use the difficulties they have to play up. It's a fine line of course and occassionally mistakes happen and as parents we have to be careful that we don't turn our feelings and responses into guilt, because that is a powerful weapon in any child's hands! In my experience there has been a clear difference between what is fear and what is controlling. When my daughter is afraid, it's sudden, it's wild, it's panic, it's violence but impulsive. When she is controlling, I can see her tick, it's thought out and it's a tantrum, there is a big difference. I have also found that with controlling behaviour the response is over the top and dramatic, and the more it's not nipped in the budd, the more extreme the response. One day saying she will run away, the next, run away I hate you, the next, run away and kill myself, the next, kill me then run away and kill myself, does that make sense?

 

We respect that our daughter has fears, anxieties and difficulties, but we have found the best way round that is to teach her and allow her to experience some fear and work out for herself how she can help herself. We have found that in doing that, she is not responding in such explosive ways. She will ask questions, we talk situations through with her, but we keep it simple and matter of fact. She will say things like, it might be noisy, and I say, yes it will be, but you can cover your ears, and now she says, yes I can can't I, or perhaps I could wear my hood up? I learnt over time, that often my response, no matter how subtle had a major impact on how she dealt with things. I stay calm and matter of fact, and most of the time that is how she is because she has learnt now she can't avoid everything and she will always have to do things she doesn't like doing, but she has a choice how she handles it. She has more confidence now, and there are times when things go to meltdown, but it's rarer. In the same respect, because we don't allow her behaviour or responses to dictate what happens next, she is a lot happier.

 

I hope that helps. It's very very hard work. I do sympathise, we have been there. There is no overnight cure, it takes a long time to get over this problem. :wacko:

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Flora   

Hi

 

I don't post here very often now, as I'm working full time and very busy. But I felt compelled to briefly post in this thread, just to offer some hope and a broad view, on account that I've been through this with my son and come out of the other side (and lived to tell the tale...:D)

 

My son is now almost 16, but from the age of about 11 or 12 to just a few months ago he was very isolated and socially phobic. He would use every tactic in the book (and a few inventions of his own) to avoid any situation other than sitting in front of his computer in his bedroom either at home or at school (he's at an asd resi school).

 

He has all the reasons for this that are common with ASD... sensory integration disorder, anxiety, depression and all the other usual social and communication difficulties, with the nasty addition of teenage hormones which do make things worse. However, it's very very important not to give in to these avoidance techniques as it really does stop them from ever overcoming or being able to even try to overcome any of the difficulties they have to face. For them to gain in confidence they need to make progress, however small, if you allow them to avoid things then they get the message that the only way to overcome or cope is to avoid a situation, and that really doesn't do them or any of the family any good at all.

 

I really feel for you becuase at 13 you probably still have a way to go, but think of what your daughter is capable of and what you would like for her, and use that as the light at the end of the tunnel. When you feel that you are being cruel because she is scared or fearful of what she has to face but you are supporting her in facing it anyway, keep your mind on that light and remind her to focus on it too... which is her gaining in confidence at each achievment (however tiny) and gaining strength from that to get to the light at the end of the tunnel.

 

Hope this makes sense.

 

flora

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bid   

I think part of the difficulties with threads like this is that everyone posts on them from their own experience.

 

Some people will have had an early dx for their child, which makes a huge difference IMO when it comes to understanding autistic beahviours and getting appropriate strategies in place. Some people will have had a late dx or, as with you jlogan, are still waiting for a relatively late dx...a situation which must be extremely difficult. Some people will have adult children who have been through those dreaded teen years and out the other side to become really very pleasant company :lol: Some people will have children at special school which is a very, very different situation to having an unsupported young person in mainstream (I've been through both :rolleyes: ).

 

Again, some of us have children who have had severe mental health problems in addtion to their ASD, while others might be thinking in terms of 'tantrums'...again, two very different situations.

 

My own advice would be to start by establishing a really good home routine...it can't hurt anyone, and all children thrive on routine and structure. With a good daily routine going, some of the stress will be removed which might make it easier to think in more detail about your DD's specific behaviours. Again, huge apologies if you run a really tight ship anyway...just for myself, I always find things harder with all my kids if the basic home routine slips :lol:

 

Hang in there, and please know you are among people who want to support you >:D<<'>

 

Bid :)

Edited by bid

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Cat   
I think part of the difficulties with threads like this is that everyone posts on them from their own experience.

 

Some people will have had an early dx for their child, which makes a huge difference IMO when it comes to understanding autistic beahviours and getting appropriate strategies in place. Some people will have had a late dx or, as with you jlogan, are still waiting for a relatively late dx...a situation which must be extremely difficult. Some people will have adult children who have been through those dreaded teen years and out the other side to become really very pleasant company :lol: Some people will have children at special school which is a very, very different situation to having an unsupported young person in mainstream (I've been through both :rolleyes: ).

 

Again, some of us have children who have had severe mental health problems in addtion to their ASD, while others might be thinking in terms of 'tantrums'...again, two very different situations.

 

My own advice would be to start by establishing a really good home routine...it can't hurt anyone, and all children thrive on routine and structure. With a good daily routine going, some of the stress will be removed which might make it easier to think in more detail about your DD's specific behaviours. Again, huge apologies if you run a really tight ship anyway...just for myself, I always find things harder with all my kids if the basic home routine slips :lol:

 

Hang in there, and please know you are among people who want to support you >:D<<'>

 

Bid :)

 

Well said Bid :)

 

We can all only go from our own experiences and they will all differ. I have two sons with autism one diagnosed aged 3 and other was not diagnosed until he was 13 and had a bag and a half full of mental health problems running alongside his Aspergers Syndrome. I have first hand experience of what the difference between and early diagnosis and a later diagnosis can be. That does not mean that this would be the same for everyone. I know for sure that had I pushed my eldest when he had just been diagnosed it would have pushed him over the edge. For him controlling has only ever been an issue when he is riddled with stress and anxiety. Being unsupported in school for so many years took it's toll and some on my son and when he was pushed too hard we ended up on suicide watch with him which is not a very nice place to be. He was not trying to control us he was crying for help. I realise that there is a very fine line between giving in to a child and allowing the space they need to self repair. Even though we lived through some very dark years with my son we did come through the other side. I know that there were several professionals who felt that my son was having tantrums but I went with my gut because I knew that there was more to it than that and in the end I was proved to be right.

 

Knowing that my youngest is autistic from the age of three made a world of difference to us never mind him. We have been able to avoid many of the things that went wrong with our eldest and we have had the time to teach him about himself. Being different is not easy for any one no matter what that difference is. Finding out that you are different at 13 when the rest of your peer group are plunging head-long into life must surely be doubly difficult and that is why we did cut our eldest some slack. It was right for us and for him. My son was never able to return to structured learning but that does not mean that we failed him. It means that we accepted that at that time it was not as important as his mental health. My son did not grow up to be a monster even though I was told that he would if I did not come down on him hard, quite the opposite in fact. He is 22 now and despite the fact that as well as his Aspergers Syndrome he is probably going to need a double cornea transplant or go blind he is a well rounded, none controlling, nice to know guy these days, who is of course still autistic, and despite what other people may believe, and we are all entitled to our beliefs, accepting that his autism could and did impact in certain areas of his life including his behaviour has helped us and him to understand how and why this is and then develop strategies to improve things for all of us. Of course both of my sons are high functioning and so we have been able to do this.

 

Cat

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darky   

I agree with you Bid. All we can ever do is go on our own experiences, and you are right that timing of diagnosis can have a bearing as well. I would never suggest my advice was right, but simply what worked for me as I'm sure is the case for most people, as is the point of a forum. All we ever get is the information we are given from one point of view, so all any of us can do is try to advise best we can on what little information we have. I tend to use the word tantrum, not necessarilly in the context of "toddler tantrum" but usually to describe a response to anger or frustration, or to get own way, heck, sometimes I tantrum! Sometimes I meltdown, I know the difference in myself. Not in a horrible way, I know what I mean! My 10 year old, 15 year old, my 12 yr old, can all tantrum, they are all ASD. Hope that makes sense?

 

I have to say that whilst we we fortunate that our daughter had an earlier diagnosis, our other two didn't and out of the three, my daughter has been the most challenging, partly because she does have complex needs with ADHD in the mix, fair enough, but partly because since diagnosis we have been bombarded with tests, results, advice and opinions that didn't know what to do with, which not only left us confused, but feeling guilty and wanting to wrap her in cotton wool as well, frightened of doing the wrong thing. For at least 2 years I can honestly say hand on heart I forgot she was a little girl, everything became the diagnosis, including the behaviour. I think that is a pretty normal parent response in the circumstances.

 

We became prisoners in our own home though, where the fears and anxiety dictated everything. She was miserable, and so were we. It was heartbreaking to even think about exposing her to her fears, and frightening to ignore her threats, and exausting dealing with tantrums AND meltdowns, but we had to do something because she wasn't going to have any chance of a happy life if things stayed the way they were, not to mention the effect it was having on our other two children who all had their own needs, not just as children with ASD's but because they are children. My boys have had their difficulties, but because of my daughter's challenging risky behaviour, they have not had the attention to their difficulties my daughter has. Quite often I will be reminded of why they have a diagnosis, we hit problems and I have to deal with it, but it does not hold us back as a family, and I think that was probably because they were diagnosed much later, and parented as children and not parenting ASD. Only time will tell if we have done right!

 

It's hard being a parent. It's a learning curve and we only get one go at it. I know I have made plenty of mistakes, and still do. Parenting children with different needs is even harder. It's hard to get advice because all children, family dynamics, attitudes and expectations are all different. If people can give advice from their own experiences, there may just be one bit of information that will help, it might hinder as well, but we don't know until we try, but it's ok to try. I know it sounds stupid, but one day someone said to me how is your little girl? I felt myself speaking about her like I was listing her symptoms and I suddenly felt so bad I forgot she was a child. It was lightbulb moment for me, and whilst I do understand her difficulties and support her, I have changed how I see her. Don't get me wrong, it has been nothing like chucking her in the deep end of a swimming pool and expecting her to swim, but a very gradual change in how we do things. 2 steps forward, one step back, but getting there. :rolleyes: I wouldn't judge anyone. It's a tough job!

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Kathryn   
I think it's far more common that people try to control their environments for (perceived or genuine) personal gain. That can be for reassurance, but there are a host of other reasons too, and as many of those reasons will be entirely subjective assumptions are dodgy territory all round.

With the best will in the world - and with no intended comment on the OP herself (or her daughter) - I do not agree (or start) with the assumption that parents necessarily know their children well... again, I think there can be a host of psychological/sociological/personal imperatives that come into play that make any such assumptions potentially dangerous...

But - all that aside, the point i was making was that your own post made some quite definiteassumptions: not much room for 'reasonable doubt' or even reasonable negotiation with definitives like IS born of fear, or CANNOT take simple changes, is there? :unsure:

If you're happy with the way you worded your post that's fine. I'm equally happy with the way I worded mine, but my original post does not express unconditional agreement with the sentiments expressed in your own and I think it's completely reasonable of me to point out that error within your own opening paragraph.

Looking again at the title of the OP, I think it's far more open minded to say 'hmmm...could be' than to rule out that possibility...

 

OK BD I take your point that I should not have included you, by implication, among the posters I agreed with and so I should have said "some" posters and not "all". Soz. :)

 

Re: parents not knowing their children - would you include yourself in that - or is it just an assumption you make about others? :shame:

 

I still take issue with the point you make about "personal gain" which is quite a loaded phrase, suggesting a deliberate and possibly cynical manipulation of one's world. I still maintain that the need to control the environment comes from fear and the need to keep things the same. I agree this needs to be tackled and the child needs to learn that the world cannot be tailored entirely to her needs and preferences, but in the case of a child who has developed an extreme fear of school over a long period of time, this needs to be done in appropriate way. It's not necessarily helpful to see it as a power struggle between the child and the school - something that can be overcome with sheer determination. The child may not be completely in control of his/her responses to the situation.

 

 

From everything you've described your daughter is seeking not only to control her own life but the lives of everyone around her. Having recently developed a hypersensitivity to sound she is asking everyone to 'adjust' their normal behaviours to accommodate her (presumably when she gets upset at the noise made by the TV/siblings her needs are taking precedence?). You constantly walk on eggshells lest she become upset and go into meltdown or self harm. She will not entertain any strategies you or anyone else suggests (timetables/charts/changes in support at school) or try to meet you halfway on anything.

This kind of accusation was levelled at us too in the really difficult times we went through with L. One physio made the offhand comment that "she (i.e. L) wields a lot of power in the family" - before walking out the door and leaving us to it. And to be sure L did control what we did to a large extent - where we went, who visited, the level of noise, etc for some considerable time. But the alternative to "giving in" would have been to experience a trashed house, frequent and dangerous self harm episodes possibly resulting in hospitalisation, a traumatised 6 year old sibling, a father too stressed to work, and a mother with her own mental health problems because she was unable to leave the house to have some semblance of a life. So we "gave in" to some extent to her demands for a secure environment for the sake of self preservation and believe me, that went against all my normal parenting instincts (I do have them). I'm sorry but when a child is in crisis sometimes "walking on eggshells" is the only alternative to not walking at all - sheer self preservation. It's not the same as dealing with an ordinarily "stroppy" teenager - it really isn't and I think most parents- especially if they have an NT child too - can tell the difference. :(

 

Finding out that you are different at 13 when the rest of your peer group are plunging head-long into life must surely be doubly difficult and that is why we did cut our eldest some slack.

Absolutely. The impact of this cannot be underestimated. It's a really difficult time to be diagnosed and to deal with a less than understanding school and no parent should be condemned for not being able to keep to the plot all the time, or even most of the time. I would venture to say parents need to cut themself some slack too as well as the child - after all, you're in it for the long haul and alone, for much of it.

 

Sory jlogan, I'm probably also guilty of imposing my own experiences here but I just want you to know that I think you're doing OK and you will come through this. Try and take on board some of the strategies folk have suggested, but don't beat yourself up over it if you have a bad day. You don't have to be a perfect parent right now - just do the best you can with the energy you have. >:D<<'>

 

K x

Edited by Kathryn

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baddad   

I think for the most part people do tend to go by their own experiences, but isn't that a reason for actually listening/considering perspectives that don't confirm your own views? Looking at wider experience? I'm all for that, but quite often the opposite is the case and many posts - particularly on behavioural issues - seem to be seeking reassurance/confirmation that it is okay to accommodate inappropriate behaviours on the basis that 'all children are different'. The reality is that those parents who post acknowledging that behavioral issues are often control issues also have children who are 'different', and they are offering advice that has worked for them. Certainly I can put my own hand up and say that before I managed to resolve some of the issues surrounding my own son's behaviour I too regularly argued that it was 'different' for him when locking horns with professionals offering advice. Shock horror - i was, in many instances (gulp)... wrong :o;) .

That said, my experiences are not exclusive to my son, and I've worked/supported many autistic and otherwise disabled people with wide ranging abilities and diverse backgrounds over many years, and those experiences also inform my perspectives. I know I'm not unique in that, and I also know that others with similar work/life experience disagree with me on some aspects of caring, so please don't take that to mean I'm assuming any sort of 'specialist status'.

I think Darky's post made a very good point (loads of them actually, but in this context one specifically):

 

For at least 2 years I can honestly say hand on heart I forgot she was a little girl, everything became the diagnosis, including the behaviour

 

L&P

 

BD :D

 

PS: a quick response to kathryn's post above which I've just seen...

yes, I do include myself in that :whistle: I've made (and will continue to make I'm sure) bad judgements regarding ben. I've never claimed to be perfect - just almost perfect ;):whistle:

Personal gain - probably a bad choice of words, and not specifically intended to imply 'cynical manipulation', though it can be that (and that applies to the whole human race - not just autistic people) and I think all of the people are capable of it some of the time - including the best among us like Mother Theresa (GRHS) and... erm... struggling to think of another person generally regarded as '100% nice"!

 

BD :D

Edited by baddad

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bid   

Thank you for your excellent post, Kathryn :notworthy:

 

I would also like to say that when I joined the forum I was at absolute rock bottom, struggling to care for a teenager who had come out of school with a complete breakdown after 10 years in mainstream with no appropriate support at all (not for want of trying to work with school on our part or lack of boundaries at home I should add).

 

As Kathryn has touched upon, I too had my own mental health problems as a result of the acute stress and anxiety I was struggling with myself.

 

I can only express my huge gratitude for the kind, compassionate and non-judgemental support and advice I received in those dark days from people such as Nellie, Helen, Cat, Mossgrove, Elefan and Kathryn herself.

 

Bid :)

Edited by bid

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darky   

Baddad, thank you for helping me to simplify my post. :lol: I do waffle sometimes and struggle to get to the point! In a nutshell, I mean that sometimes, I know myself that being confused with every bit of information that has been bombarded at me, as well as a diagnosis I knew nothing about at the time, left me not knowing what to do for the best. Quite often I would get advice I didn't want to hear, but at the same time it made me think. I certainly don't think people write things to upset or offend people. Sometimes, all I needed to hear was that is was ok to see her as a child and not one with a diagnosis or difficulties and actually it's ok. I remember not long after the diagnosis I felt totally overwhelmed trying to figure out what behaviour fell under what diagnosis and the symptoms because the strategies and advice I was given was different. So I was like, is this sensory due to the ASD, or hyperactivity of ADHD, the impulsivity of ADHD or meltdown in ASD? My brain was mush! It took one heck of a long time to realise that actually the diagnosis doesn't spell out what my child needs. :unsure: Experience helps. Getting a diagnosis helps although not in the begining because it's kind of like being thrown in the middle of spaggetti junction with no map. :wacko: I hope I havn't come across patronising. I would never underestimate how difficult it is for any parent. We have had very dark days and at times I never thought I would get through them. Forums like this have helped loads. I would never forget how hard it can be, because some days it still is, but I would like to think that people could be honest and give me advice, sometimes comforting me that it's ok, sometimes giving me new strategies, and sometimes telling me what I don't want to hear or didn't expect to. Group hug >:D<<'>

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jlogan1   

thanks for all advise i have decided to try a timetable be it a very basic one ie.just something like one or two things on it although dd has already said 'in your dreams'but its getting her to do any work.she just isnt interested :wallbash: she was fine at primary school and did really well but trying to get her to do anything the school set is hell,all she wants to do is read twilght books ,shes read all four about 4-5 times in last few months but is totally obsessed,its all she talks about she spends most of her computer time reading up on it etc,it just goes on and on :tearful: she is due to do a book review but isnt interested in what the home ed teacher has sent so i've said do it on twilight working on the basis that something is better than nothing,but how do i get over the fact she is just not interested in school work :tearful: ive tried the taking the compter cable away etc,but she got wise and now if feels threatened takes it herself and hides it!!!help :wallbash: just seem to go in circles,she has agreed to do book review today but will believe it when see it,and feel if she doesnt get sorted on work front school will just give up :unsure::rolleyes: so any ideas ? by way she writes and writes pages of work ,unfortunately its all taken from twilight and no=one is allowed to read it,have checked to see if she is writing her own things but ( for imaginatio but she says its just taken from the books :wallbash: right anyone got a miracle idea or do i just base work on her interests( which are also plane crashes at the moment,same thing did a wonderful project on it when the airfrance went down ,pictures looked up all the info on loads of crashes etc) but scholl arent interested they want there work done.sorry to go but there just seems to be so many issues at mo to try ans sort out at once. >:D<<'> >:D<<'>

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bid   
thanks for all advise i have decided to try a timetable be it a very basic one ie.just something like one or two things on it although dd has already said 'in your dreams'but its getting her to do any work.she just isnt interested :wallbash: she was fine at primary school and did really well but trying to get her to do anything the school set is hell,all she wants to do is read twilght books ,shes read all four about 4-5 times in last few months but is totally obsessed,its all she talks about she spends most of her computer time reading up on it etc,it just goes on and on :tearful: she is due to do a book review but isnt interested in what the home ed teacher has sent so i've said do it on twilight working on the basis that something is better than nothing,but how do i get over the fact she is just not interested in school work :tearful: ive tried the taking the compter cable away etc,but she got wise and now if feels threatened takes it herself and hides it!!!help :wallbash: just seem to go in circles,she has agreed to do book review today but will believe it when see it,and feel if she doesnt get sorted on work front school will just give up :unsure::rolleyes: so any ideas ? by way she writes and writes pages of work ,unfortunately its all taken from twilight and no=one is allowed to read it,have checked to see if she is writing her own things but ( for imaginatio but she says its just taken from the books :wallbash: right anyone got a miracle idea or do i just base work on her interests( which are also plane crashes at the moment,same thing did a wonderful project on it when the airfrance went down ,pictures looked up all the info on loads of crashes etc) but scholl arent interested they want there work done.sorry to go but there just seems to be so many issues at mo to try ans sort out at once. >:D<<'> >:D<<'>

 

Hi again,

 

I hope I haven't added more confusion! :unsure: The kind of timetable we're talking about isn't like a school timetable.

 

It's more a run down of your child's day from getting up to going to bed. It can be as simple or complicated as your child needs. For example, if a child has difficulties getting up, a simple visual timetable would start with getting out of bed, then going to the loo, having a wash, getting dressed and so on to show the order to do things.

 

My son didn't need that kind of detailed help. His timetable for when he was out of school started with a reasonable getting up time, bath, breakfast. Then any home tutoring was included, and an attempt to structure his free time so that he didn't spend it all on the computer...he had designated computer time, then computer-free time, meals and bed-time.

 

Don't know if that makes things any clearer! :lol: Some children benefit from a visual timetable that uses just simple pictures, others need pictures and simple words/phrases, and my son had approx times and then a simple description of what was happening in that time slot. His timetable was for a week at a time, so that he could see when things were due to happen, which helped with anxiety over the unexpected, etc.

 

HTH!

 

Bid :)

Edited by bid

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baddad   
thanks for all advise i have decided to try a timetable be it a very basic one ie.just something like one or two things on it although dd has already said 'in your dreams'but its getting her to do any work.she just isnt interested :wallbash: she was fine at primary school and did really well but trying to get her to do anything the school set is hell,all she wants to do is read twilght books ,shes read all four about 4-5 times in last few months but is totally obsessed,its all she talks about she spends most of her computer time reading up on it etc,it just goes on and on :tearful: she is due to do a book review but isnt interested in what the home ed teacher has sent so i've said do it on twilight working on the basis that something is better than nothing,but how do i get over the fact she is just not interested in school work :tearful: ive tried the taking the compter cable away etc,but she got wise and now if feels threatened takes it herself and hides it!!!help :wallbash: just seem to go in circles,she has agreed to do book review today but will believe it when see it,and feel if she doesnt get sorted on work front school will just give up :unsure::rolleyes: so any ideas ? by way she writes and writes pages of work ,unfortunately its all taken from twilight and no=one is allowed to read it,have checked to see if she is writing her own things but ( for imaginatio but she says its just taken from the books :wallbash: right anyone got a miracle idea or do i just base work on her interests( which are also plane crashes at the moment,same thing did a wonderful project on it when the airfrance went down ,pictures looked up all the info on loads of crashes etc) but scholl arent interested they want there work done.sorry to go but there just seems to be so many issues at mo to try ans sort out at once. >:D<<'> >:D<<'>

 

Hi again :)

I totally agree about how useful time-tables/visual cues etc can be, but in this case would say it's a pointless exercise. Your daughter has already said she will ignore it, and when she does ignore it you have no strategy in place to deal with her ignoring it. It will just become another example of the 'usual' strategies not working for her. For a strategy to work you either need cooperation or reinforcement or, preferably, both. You have neither.

Trying to mould assignment work to your daughter's interests is another good idea, but for that you need three things: compromise (so that the assignment meets both the school's criteria and your daughter's own agenda); cooperation and reinforcement. You have none of those things.

In the above you've said that you feel if she doesn't deliver her book review the school will just 'give up', but what in real terms do you think school can do? They've given the assignment to her with an expectation that she will do it, but that expectation isn't being reinforced at home. Other than the school (or you) standing over her until it's finished - which she would not accept and you would not reinforce - what else can the school do?

The simple fact is your daughter doesn't care. She doesn't care what school wants, or what you want and at the moment she doesn't see any consequences to/of not caring. It sounds harsh (and positively Victorian - but that's the trouble with cliches!) but until 'Don't care is made to care' nothing you try can work. 'Made to care' by the way, shouldn't be interpreted as an endorsement of physical punishment, but does imply firm boundaries, sanctions, expectations, rules and consequences. If the computer is her biggest love that is probably the biggest sanction you can impose, and there are far simpler ways of stopping her from accessing it than hiding the cables; though you will have to be prepared to deal with the consequences.

 

I hope this doesn't come across as glib, but another thing i'd suggest is reading through your own posts again in this thread, but skipping all of the responses and the posts you have made acknowleding/commenting on those responses. You may find looking again at the 'bare bones' of the problem helps you see the wood from the trees...

 

One final suggestion: you need to decide whether you and your daughter are going to 'fix' this problem or whether the fix is going to come from outside agencies. Ideally, it should be a three way thing, but at the moment that's not on the cards, because your daughter won't comply with any external strategies and you won't/can't reinforce them. If you decide that you/your daughter are going to fix it then you both need to know what's expected and what the rules are and have sanctions/rewards/consequences in place for when those expectations are met or not met. If you decide that outside agencies need to be involved (whether as a three way partnership or as the directing force) you need to accept what they are telling you and act accordingly. There will be many that argue against the latter in favour of 'gut instinct' or 'parents know best', but by definition a parent is so close to the problem and has such an emotional investment that they haven't (IMO) really got a hope in hell of seeing the full picture. And again, if outside agencies are involved but their suggestions aren't followed/enforced, you'll have a further example of the 'usual things' not working. The more that happens the easier it is to give up next time.

 

Oh - just noticed one final thing:

 

there just seems to be so many issues at mo to try ans sort out at once

 

That's a biggy. Trying to fix every hole in a leaky ship at the same time is impossible. You've got to look for the biggest hole and patch that. When that patch is in place you'll have brought yourself some time to work on the next one...and the next...etcetc.

 

Hope that's helpful

 

L&P

 

BD :D

 

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darky   

Just a thought. "obsessions" or interests can be a blessing and can be a good means to opening up communication. What about using her interests in developing some ground rules? Like the visual timetable idea. You could maybe start of by showing an interest in her obsession, playing it down, getting to her to answer questions on it and allowing her to put you right when you get a fact wrong. This could open up some communication and give you common ground. In my experience, some children with ASD can get cross when you get a fact wrong and their reaction can be suprising, but I have found if I stay calm and ignore it and don't take it personally, and say something like, oh I'm silly for not knowing that, I'm glad you helped me understand, can really help. Perhaps after a while you could get some Twilight pictures and work with her to design a timetable and ask her what she thinks could help her? It is important that she doesn't see it as a negative thing, or critisism for what she is not able to do, but something that will help her with things she can do. The obsessions or interests are important to them, in most cases to the exclusion of most other things, so although it can be difficult, it can be a blessing because the interests can be the route to finding that common ground.

 

I think it's going to take a while to be able to put things like this in place as your daughter seems unwilling to work with you or anyone else at the moment, but with little steps, patience and occassional going backwards, I think it is possible to make progress. In my opinion, I think your daughter just has learnt a response because it's the only response that gives a predictable reaction for her that enables her to know what is going to happen next. In that respect I can understand why people say her reactions are born out of fear, and that's the fear of the unknown. Not a critisism as all, but I think you need to wipe the slate clean and go back to basics and try things you have already tried, but with a slightly different angle to allow you, your daughter and the school to establish the trust in each other again. It is always tempting to think, oh he/she won't do that, because of a past reaction, but sometimes results can be surprising. I hope that makes sense? >:D<<'>

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Kathryn   
The simple fact is your daughter doesn't care. She doesn't care what school wants, or what you want and at the moment she doesn't see any consequences to/of not caring.

 

Well that's one heck of an assumption, and somewhat judgemental. :( I'm glad you didn't post anything like that when L was out of school because this is just how she presented.

 

It sounds harsh (and positively Victorian - but that's the trouble with cliches!) but until 'Don't care is made to care' nothing you try can work. 'Made to care' by the way, shouldn't be interpreted as an endorsement of physical punishment, but does imply firm boundaries, sanctions, expectations, rules and consequences. If the computer is her biggest love that is probably the biggest sanction you can impose, and there are far simpler ways of stopping her from accessing it than hiding the cables; though you will have to be prepared to deal with the consequences.

 

I agree in principle, but the boundaries and expectations have to be manageable and when you're dealing with with a possibly severely depressed and anxious teenager who's been out of school for a year the expectations have to be scaled right down - especially if you're a parent on your own. Not everyone has the luxury of an expert supportive team behind them - alas. When you have the added risk of self harm you have to go really carefully.

 

Jlogan. I'm wary of saying your situation is exactly the same as mine, but there are aspects that seem similar so I'll just give you a bit of background in case anything helps. My daughter was out of education for over a year with severe anxiety and depression, in our case, following a diagnosis of AS. For a while we tried a part time timetable a bit like yours and although she didn't refuse to go, her anxiety levels were so great that she could even not walk to school without putting herself in danger.

 

Then we tried LA home tuition in the basics, Maths English and Science. At first this seemed OK but she got really anxious about that too and would not do any work for the tutor and got really angry about it. Any suggestion of schoolwork just sent her into complete meltdown. Because the tutor was so lovely and I wanted L to have some structure to her week, I suggested the tutor just do drawing and painting with her. This worked for a while but we had to cut the sessions down to half an hour - it was all she could manage. Then she got too anxious even for that.

 

I'm not a "timetable" kind of person, but I really tried to impose some kind of routine and normality during this time - there was no question of her returning to the school so I tried to get her to cook, go for walks and pursue the interests she had had before. She was very avoidant though and some days I was so stressed and depressed myself I just didn't have the will to even make her leave her room. She rarely left the house or saw any visitors for a whole year. Her noise sensitivity and need for rigid routine increased dramatically. She couldn't even walk round the park outside because of barking dogs. We were getting minimal help from professionals.

 

The only thing that gave her and us a bit of respite was allowing her to play a particular x box game and to go on the computer. Taking these away as a sanction would have had little effect as she was past being able to understand consequences and modify her behaviour, and depriving her of her only stress relief would have made the situation worse for everyone.

 

As you say, there are lots of issues to sort out at once and you are still in limbo regarding the diagnosis, so take it easy. I understand that you don't want the school to give up on your daughter, but if the work she is being set is failing to engage her, is there any point in flogging this dead horse? In answer to your question I would say yes, in the short term, allow her to do something which interests her and gives her a reason to get out of bed in the morning: whether that is Twilight or plane crashes or cats or whatever.

 

One more insight: my daughter has come through that difficult time and is now five years older and fully engaged in life. She told me that during the time of greatest anxiety, she had a real fear that her brain wasn't working properly any more and that she was losing her ability to think. This is why she panicked when confronted with schoolwork of any kind. To us it looked like sheer ###### minded stubborn refusal to work, but it was actually avoidance born of fear of not being able to do what was expected of her and what she had always found easy.

 

It sounds like the school has done all it's willing or able to do, and is waiting for your daughter to "pull herself together". How long is this situation going to continue? Maybe it's time to consider whether this is the right educational environment for her?

 

Ah well I've rambled on - I hope there are one or two things that have helped. Have some of these anyway. >:D<<'> >:D<<'> and take the pressure off yourself. Do whatever gets you through the day in one piece.

 

K x

 

 

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bid   
Well that's one heck of an assumption, and somewhat judgemental. :( I'm glad you didn't post anything like that when L was out of school because this is just how she presented.

 

I can only echo that sentiment, Kathryn :(

 

One more insight: my daughter has come through that difficult time and is now five years older and fully engaged in life. She told me that during the time of greatest anxiety, she had a real fear that her brain wasn't working properly any more and that she was losing her ability to think. This is why she panicked when confronted with schoolwork of any kind. To us it looked like sheer ###### minded stubborn refusal to work, but it was actually avoidance born of fear of not being able to do what was expected of her and what she had always found easy.

 

I think this an extremely useful insight. My son was described by the LA Ed Psych as 'no longer functioning as a learner'. I think it highlights the fact that in fragile situations like this, both parents and professionals have to tread very carefully. It also explains very eloquently what I was trying to say in a previous post where I talked about the difference between teenage mental health problems and 'tantrums'.

 

Jlogan, I think in an earlier post you mentioned the psychologist who has been working with your daughter? What suggestions/strategies have they put forward?

 

Bid :)

 

 

 

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bid   
Just a thought. "obsessions" or interests can be a blessing and can be a good means to opening up communication. What about using her interests in developing some ground rules? Like the visual timetable idea. You could maybe start of by showing an interest in her obsession, playing it down, getting to her to answer questions on it and allowing her to put you right when you get a fact wrong. This could open up some communication and give you common ground. In my experience, some children with ASD can get cross when you get a fact wrong and their reaction can be suprising, but I have found if I stay calm and ignore it and don't take it personally, and say something like, oh I'm silly for not knowing that, I'm glad you helped me understand, can really help. Perhaps after a while you could get some Twilight pictures and work with her to design a timetable and ask her what she thinks could help her? It is important that she doesn't see it as a negative thing, or critisism for what she is not able to do, but something that will help her with things she can do. The obsessions or interests are important to them, in most cases to the exclusion of most other things, so although it can be difficult, it can be a blessing because the interests can be the route to finding that common ground.

 

I think it's going to take a while to be able to put things like this in place as your daughter seems unwilling to work with you or anyone else at the moment, but with little steps, patience and occassional going backwards, I think it is possible to make progress. In my opinion, I think your daughter just has learnt a response because it's the only response that gives a predictable reaction for her that enables her to know what is going to happen next. In that respect I can understand why people say her reactions are born out of fear, and that's the fear of the unknown. Not a critisism as all, but I think you need to wipe the slate clean and go back to basics and try things you have already tried, but with a slightly different angle to allow you, your daughter and the school to establish the trust in each other again. It is always tempting to think, oh he/she won't do that, because of a past reaction, but sometimes results can be surprising. I hope that makes sense? >:D<<'>

 

I think Darky has made some really good suggestions for using your DD's special interest as a means of encouraging communication.

 

Bid :)

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jlogan1   

now totally confused,yes we see phycologist and her theory is to work on actions and consequensies,ok i've just done that she still wont do book review so have taken cable to computer and tv away,so shes thrown a 'tantrum' and says fine but that will not make her do the work :wallbash: so looking at past replies have i done the right thing by taking away her 'interests'dont know wheteher i'm coming or going,phycologist has said on past experience there is no point in keep repeating myself to her as she doesnt take it in,ie she just changes the subject to her obsessions,and in the past when i tell her dont do --- it makes no difference cos she doesnt take it in so what is the point in taking her comp and tv away when all it does is make her angry and upset and STILL makes no difference cos the consequence of her actions,ie not doing her work,just doesnt sink in!!!from a small child she drew on walls and with siblings after a few times they get the message and would never dream of drawing on a wall but at 13 she still occasionally does it but telling her off doesnt have any effect,same as homework doesnt matter what the consequence is she still wont do, :robbie: going round in circles again,will follow through and will keep comp and tv till work done but still not sure its right!!as previous said taking away her only interests,HELP.slowly going round the twist >:D<<'> >:D<<'>

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jlogan1   

me again, or rather than taking something away should i be looking at do the work and get a reward,or is this starting another problem?or is it the encouragement she needs rather than a punishment?

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bid   
me again, or rather than taking something away should i be looking at do the work and get a reward,or is this starting another problem?or is it the encouragement she needs rather than a punishment?

 

How about presenting the TV/comp as the reward?

 

Saying 'When you have done your book review, then you can watch TV/have x amount of computer time'. Keep the sentence that simple, use the same sentence each time without introducing any emotional content and verbally put the emphasis on the when and then.

 

I remember my son's specialist recommended we use this 'When...then' phrasing. We use this a lot at work, and it does work (I work in a residential special school).

 

That way you are using the TV/computer as a positive reinforcer rather than a negative punishment.

 

Bid :)

Edited by bid

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