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The passive child/pretending to be 'normal'

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Do you have a child with ASD who is passive or pretends to cope?

 

How do you get your child's difficulties recognised by professionals, relatives, friends etc.?

 

How do you help school staff to recognise your child is pretending to cope?

 

Do you think the fall out at home after school is due to the child having to pretend?

 

Do you think there can be other reasons for this fall out?

 

Do you think the child who is trying to be invisible wants attention or would rather stay invisible?

 

Should the LEA put provision in place for a child who is coping or appearing to cope at school?

 

How do you convince the LEA that the child is only pretending to cope?

 

 

This topic is very close to my heart. My child, now an adult pretended to cope, his learning difficulties were recognised but not his ASD. He had fantastic teachers who were very experienced in ASD, they adored him and respected him but could never see the 'real' person. He would do anything not to attract attention to himself. This was in all situations where there were people other than immediate family. I now support and represent parents, and many of them are faced with this problem. I would appreciate feedback on this subject.

 

Nellie.

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Nellie,

Everything that you have mentioned describes my little girl!

At the moment I am fighting with the LEA for an increase in SEN support but finding it difficult because she appears to cope. What they don't see is the little girl who is so overwrought when she leaves school that she kicks, bites, screams or just withdraws altogether when she comes home.

Some friends and family think that because her speech has improved then she's getting much better. However, they again don't know the turmoil that she goes through each day.

How do you get people to understand? I think talk about it to as many people who will listen. I am not embarrassed or ashamed of my girl and I don't want her to be either when she's old enough to be told.(She's 5 ). People will label her anyway as being different so why not put a name to it and an explanation.

I could go on and on because this is one subject that makes me angry, sad and all the other emotions that AS parents.

Sorry for rambling but i'm having one of those days were I am so sick and tired of trying to defend why my child needs support to people who should know.

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Nellie

Having just rambled on complaining of feeling sick & tired, my little darling has just popped out of my wardrobe with a pair of high heel boots which reach her thighs, my belt around her waist and my recently purchased lipstickall over her face!

No matter how bad things seem they always seem to be able to put a smile on your face! Would you agree?

Vicki

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Vicky

 

Thanks for replying.

 

Yes, I have a mental picture of your little girl covered in lipstick, she sounds gorgeous.

 

I am sorry you are having a difficult time, I can well remember the frustration of trying to get people to understand.

 

Has your little girl been assessed and statemented? I can only suggest you keep a diary of her difficulties at home and the effect school has on her well being. It is a huge problem and I wish I knew all the answers.

 

Nellie.

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Nellie

 

Your questions are exactly the ones that I'm facing, and you describe my boy precisely. He has no evident learning difficulties and excellent school behaviour.

 

The school is prepared to recognise that he has AS (big of them) but not that they should do anything to adapt his treatment at school to help him. They see it as a 'home' issue.

 

He hasn't got a Statement.

 

So far as I can tell, its no surprise to health professionals that an ASD child should behave as you describe. It might be atypical AS, but its not unusual.

 

Tomorrow we're meeting an educational psychologist for the second time. We insisted that she be called in - the school tried (sneakily) to stand in our way on this. So far she's observed that he seems perfectly normal at school - lets hope we can get her to realise that his AS affects him just as much at school as it does at home, even though he hides it.

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Thankyou for your input Elanor,

 

This is a very complex problem.

 

I can understand the difficulty that school staff and professionals have in recognising the child who needs special provision. I know there are children who can cope with their ASD, my husband managed very well at school and at home. He says he would not have needed or wanted intervention. He still manages to cope well with his difficulties which can be quite severe. If he is having a really difficult time he pretends to cope and does it very well.

 

As the professionals are seeing children who pretend to cope and children who are coping, how are they supposed to be able to recognise the difference? They must listen to the parents and take the views and information we provide on board. We as parents must spell it out clearly what the child is like and what the child's needs are, what changes need to be made to make his/her life better. The child with behavioural problems may be using his bad behaviour as a form of communication, the child who pretends to cope often has no form of communication.

 

My son who pretended to cope at school suffered greatly and had periods of catatonia which we now believe were due to severe stress. Children who are suffering due to stress at school must have their needs identified.

 

Any input on this subject will be gratefully received.

 

Cheers

 

Nellie.

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Hi Nellie,

 

I can identify with everything that you've said. The other day Daniel actually told me that he only pretended to understand what his teacher said during an English lesson (amongst others) so that he wouldn't have to put his hand up and request an explanation in front of his peers. Although he has a one-to-one L.S.A on a full time basis, he doesn't have confidence in her ability to support him when he needs help and quite frankly, neither do I. <_<

 

I have a review meeting this week - Daniel has also been invited to attend, as I presume both school and the LEA want his views on certain matters.

 

"It is hoped to keep the meeting as informal as possible, so that everyone including Daniel can give their opinion freely in a relaxed atmosphere", relaxed my A*S*. Daniel has a significant delay in expressive and receptive language, he is unable to explain exactly what he means, at the best of times. He doesn't feel comfortable bearing his soul to people whom he knows, let alone complete strangers or anyone else for that matter, outside his immediate family. His L.S.A. will more than probably be present - this is a woman who hasn't any experience of ASD apart from a one day course in AS. I suppose the LEA will also ask for her valuable opinion on how Daniel is coping - and this opinion will most definitely be noted by the LEA and possibly used against him during a forthcoming tribunal date.

 

I know that when the time comes for him to give his true opinion, he will be careful not to 'upset' anyone - his L.S.A. or staff members.

 

I'll just have to wait for him to leave the room, after he's provided his opinions, before I clearly inform everyone of my concerns. :angry:

 

Helen

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Thank you Helen.

 

I can relate to what you are saying. Do you think it would help if Daniel put his views in writing. He might find it easier. It might also be the case that he will be able to express himself better. Should he not be given the choice of attending the review? It doesn't seem fair to force him to attend when he may not want to. He could decline the invitation and give his reasons in writing.

 

It is very difficult for a child to go to a review, even more difficult to speak in front of everyone. I remember a lady with ASD relating to this in a talk she gave. She said when visiting a paediatrician with her mother she behaved like a dog and barked. Her mother was none too pleased, on leaving, her daughter explained, if she were a dog 'they' wouldn't be able to ask questions!!

 

I hope your review goes well.

 

Nellie

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Thanks Nellie for the advice, as I really don't know what to do for the best, as Daniel's opinions/views could be misinterpreted.

 

I'll speak with him in the morning and give him the option of attending the meeting which is scheduled for this coming Friday.

 

I hadn't thought about him constructing his views in writing - brilliant idea! :)

 

Many thanks, Helen.

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Hi Nellie,

I have followed your advice and bought a diary as I have just arranged a meeting with the Head of Special Ed Needs. My girl does have a statement and currently has 10 hrs of SEN support per week, however when I collect her from school she kicks and tries to bite me on the way to the car. Also if any of the other children try to speak to her or call her name she sticks her tongue out or tries to hit them. Is this a reaction to a stressful day?

I have actually considered getting a friend to videotape us leaving the school and in the house immediately afterwards to show to the Ed Dept. No amount of talking seems to work. I know it probably sounds like a really bad idea, but i'm running out of options! :unsure:

Any further advice would be much appreciated!

Thanks Vicki

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Hi Vicki

 

This is a massive problem for parents. It is very difficult to get LEA's to accept that the problem is during the school day. It may even be that it is not the schools fault. Lots of parents make video's but I would suggest you think through any issues with it, ie invading other people's privacy. Even if you get the LEA to understand what she is like on leaving school and at home they still might not accept it is their problem.

 

Can you get any evidence that your child is not having her needs met at school. Children can have problems talking about the school day, is she able to tell you about her school day? Is she making academic progress? Does she have any other needs that are not mentioned on the statement? You need evidence. Maybe another professional, maybe a health professional who will support your views.

Are the staff trained, if they don't have the understanding this may be the problem.

 

Some children (and adults) have problems with transition. This can be leaving the house, coming home from school, trips out etc. I believe this is due to their lack of imagination to understand what is going to happen to them. You could try telling her before she goes to school what she is going to do when she leaves. Some people say exercise works for their child (a trip to the playground or swimming) others say a quiet corner or a quiet room when they come home. It depends on what works for your child. Reward for good behaviour on leaving school, something she really wants. It may help a lot if you don't react to her behaviour, physically remove her without saying anything. I would even see if she is hungry, maybe her energy levels are low.

 

I really wish I knew the answer to this problem. If anyone else knows, please let us into the secret!!

 

Good luck, I do know how draining and frustrating this is. It is not nice to watch your child suffer and have no way of dealing with it. Keep gathering evidence.

 

Nellie

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hi Nelli,

 

I have decided to take this a question at a time so i wil say sorry now if it is a very long reply.........

 

Daniel is passive and also prentends, it depends on who and where he is, if he is with an older child or adult he is passive, he is only agresive with his peers or sister.

If he is unsure he pretends, this goes for school as well sa home. no matter how many times you talk to him and explain, most of the time if he does not understand he will say he does to shut me up!! :o

 

getting people to understand....... i don't need to say much about his school do i <_< you know how i feel about that!!! :angry: friends and family well some try and some don't but on the whole most of them just take daniel for who his is and the ones that have the most input into his life are great on the whole. :D and take the time to learn more.

 

I do think that alot of Daniels mood are conected to school if hes had a bad day then we all suffer. in some way its like he needs us to know how hes feeling inside and he can't say it in word so he makes us feel the same way to show us.

 

The invisable part, i think its a bit of both, Daniel just wants to be himself so sometimes its easier to be invisable and others its nice to be seen, the grey area comes when hes confused and upset then he gets loud but does not want anyone to notice him ( which they do when hes like this)

 

The nice ( taken very loosley) LEA, yes there should be provisions for child who might be coping at school or pretending they are. As a parent of a child who deos this most of the time, its not the school that sees the bad bits its the family at home who do, do they really think that we want out children to be like this and that we are making this all up. Why can't they see that our children react when they get home to things that go on at school because they feel safer at home to express themself's

 

But to your last question Nelli i have no idea, i am finding it hard enough to get them to listen to me as it is even with all the things that have happened, but just maybe if they would take 5 minutes to go to forums like this where real parents take they might see that we are not just making tings up as we go along.

 

Not sure if this is of any help

 

Karen xx

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Hi Vjmac,

 

I supplied for three weeks, for a NNEB who worked in an infant specialist teaching facility, supporting children with quite complex needs. One particular little lad who has Downs Syndrome was aged 3 years old at the time and a real sweetie! :)

 

I couldn't for the life of me understand why such a well behaved and co-operative little boy would need to be in an STF unit. I made this comment to the SENCO who laughed sarcasticly in my face. She told me that he was a real horror to all family members, that the family couldn't get the accurate provision for the son because no-one would believe the hell that he put them through every day when he was at home. In the end, the only option the parents had was to video tape the child's daily routine in the home environment - home only, as he was on his best behaviour outside the home. The parents received the necessary provision for their son on the 'supporting' evidence of the video tape.

 

The SENCO and NNEB even had their doubts about the parents credibility - that was until they viewed the tape for themselves... :o

 

Sometimes, drastic times call for drastic measures, if you've tried everything else, you know you always have this option of recording your daughters behaviour to fall back on, should you wish to do so.

 

Helen

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Thanks for that Helen,

 

It is possible that even with that evidence an LEA may refuse to except it is a school issue. I think it may be the case that some LEA's may be only too aware ot the home issues but still will not accept it as an SEN problem. As some children do cope with school, how do we explain the difference?

 

Lack of training in ASD for school staff could be part of the problem. If staff have no understanding of ASD how can they recognise a child pretending to cope as opposed to a child coping? Any comments on this?

 

Thank you everyone for your input, don't stop now!!

 

 

Nellie x

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Hi Nellie,

 

I agree with what you say, but it's a constant battle just trying to educate the staff even though they are in receipt of all relevant documentation that has been provided by the professionals. :(

 

I had a meeting scheduled for yesterday afternoon in relation to the instance when Daniel was given a dentention by his head of year for 'getting wet'.

 

Because of the bad weather conditions, I telephoned school yesterday morning enquiring if the school was open, and was informed that school was only open for staff. As I didn't receive a phone from the school anytime throughout the day, I assumed the meeting was still on course. I turned up at the school only to find it closed... Normally I would have been annoyed by this time wasting, but to be perfectly honest I really couldn't be bothered to get annoyed. I would be the one with all this negative emotion inside me, not anyone else. <_<

 

I actually felt better for not getting annoyed. Does this make any sense to anyone? :huh:

 

I am supposed to have a review meeting today, depending again on the weather. Daniel doesn't want to attend the meeting, but he has written down his opinions/points about the school, which incorportate good and bad. Some points are totally AS way of thinking e.g. I don't like wearing my school jumper, because it makes me itch :lol:

 

Helen

 

edited post: 10.05 am - review meeting cancelled...

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Hi Helen

 

Shame about the meeting. I take it Daniel was happy with his decision not to attend his review. I hope it goes well - when you finally have it!!

 

You said you felt better for not getting annoyed, yes I can understand this. This is a problem that I had for many years and I think it happens to many parents. I don't think there is an answer to it. The frustration, anger, resentment build up until you can no longer think clearly, communicate properly or be rational. It is probably human nature, it affects mums more than dads, probably because they are less emotional. The answer is to stay calm but like the tiger protecting her cubs you get a titch annoyed when someone upsets them!!

 

How do other parents cope with this, can you control it? Does it affect your relationship with professionals? Do you find it a positive or a negative emotion?

 

Nellie.

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Hi Nellie,

 

Thanks for the good advice about giving Daniel the option of providing his written reply, he definitely was more at ease with this suggestion and I'm glad to say that as I made his comments and my parental comments available to school this morning, the relevant staff seem to have accepted this form of communication.

 

You're also right in what you say about all the negativities and how they affect a person's life. I've decided that the time has come for me 'to move on' and get on with my life - there's a deep pain somewhere inside me, that I need to let go.

 

The sixty four thousand dollar question is how do I do this?

 

The only obvious answer is to disclose some documentation that I've kept safe for the past four years, documentation from Daniel's first school and from the LEA which proves an injustice.

 

I had every intention of making a negligence claim after the tribunal, but now I just want to bury my little box of posion once and for all.

 

Helen

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Hi Helen,

 

Good to hear the suggestions worked.

 

Coming to terms with injustice is not easy. I did make formal complaints, one resulted in the appropriate action being taken. The other was about LEA negligence, this negligence was the cause of great misery to my son and family. Winning the complaints action made no difference to my anger and pain, that lasted for some years. I eventually managed to forgive the people involved and accept what had happened. I am not saying it was easy, but it has made a difference to my life.

 

I'm sure you will find your way of coming to terms with the injustices that have happened to you and your family.

 

Take care

 

Nellie.

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Hi again,

 

Sorry Nellie, but I forgot to answer your questions just then :)

 

I initially found my negativities difficult to control, but I have learnt to control them over time, but they begin to fester inside you and make you suspicious of everyone and their motives. I would say that if there was a prize for the world's most suspicious person - I would win hands down :rolleyes:

 

The anger and frustration leaves a branding on a persons subconscious. There becomes only a selective 'few' whom you're able to trust and rely on.

 

Where the professionals are concerned, you try to educate yourself on different matters, so that you don't get caught out, or that someone isn't able to pull a fast one on you - because if this happens, you feel that you've let your child down, by not being in a strong enough position to argue back. :angry:

 

I am not obessional or paranoid, but this type of negative emotion drives you on, it makes you mentally stronger, it makes you focused and determind; with this emotion you can move mountains.

But it also makes you sad - I know there are hundreds of other adjectives, but I can't think of another way to describe it. :(

 

Over time, this negative emotion enables you to tune into other people. You learn to read the other person's body langauge. You make eye contact to the extent that the other person literally can't bear to look at you. It enables you to 'sus' a person out even before they've spoken to you - it gives you the ability to correctly judge someone. Where I'm so implusive, I can see how predictable the other person is.

 

This is the first time that I've been able to say how I actually feel, and it's a relief...

 

Helen

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Helen,

 

Thanks for that Helen. Bet it was good to get that off your chest.

 

I will say that some professionals who made mistakes, did not always do it deliberately, but because they didn't understand or were just plain human.

 

Cheers

 

Nellie

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Hi Nellie,

 

The conclusion that I've finally reached is that you get good and bad everywhere, in evey profession going - the good are restricted in what they are able to recommend and the bad are simply ignorant of their duties and responsibilities.

 

Helen.

 

p.s. It was good to talk, it helped me, and now I'm going to have a drink :)

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Hi there

I think ive stated on a different post that this is exactly how my daughter is.

Goes through the school gates a smiley 7yr old then comes out looking exhausted and hyper at the same time (if thats possible) with an aggressive nature.

Totally demanding and takes out her whole day on myself or her elder brother.

She used to come straight in from school, go to her bedroom and imitate the teacher.This was the first sign for me,but also made me sad to think she was feeling this way.The imitation was never happy, always shouting or screaming at the other children in a really negative way.It was a while before i realised that this was her way of relaying her school day to me :(

How sad that she couldnt just tell me what she was feeling.This went on for months, maybe was a kind of release to her.Its stopped now except for the odd occasion.She now comes home and spends most of the evening having tantrums over the slightest thing.Refuses to answer any questions about school, and will often say i cant remember what i did so dont ask me again.Followed by mornings of im never going to school again, i told you.

Teacher says she is fine! arghhhhhh each and everytime i ask.

Appointment 9th march hopefully to sort this.Sorry for waffling on

Lisa x

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I have been reading through everyones experiences and each story brought a lump to my throat. I went through all this pain and trouble with my son Chris for five consecutive years. I recently started a topic about autism in Mainstream schools as I have to give a speach to a panel of teachers and professionals about this issue. As i mentioned in another topic Chris went through hell, we went through hell. Each morning was an hour and a half of screaming, on occassions I had to pyhsically pull him out of the car and drag him still screaming to the school gate. Then for the next 6 hrs I was reported by all teachers that Chris was a "model" pupil. When his 6 hrs were up, as soon as I collected him all hell broke loose. Screaming, hitting, kicking, trashing rooms etc. You all know the score. Eventually due to a series of events, the school finally believed us, then had the nerve to tell me that Chris was a danger to the school and other pupils and needed to be statmented.....!! Well you can imagine my reaction. ;)

 

Chris is now happy, settled and we have no longer got any trouble getting him into school. :D We still get expected "meltdowns" but they are now over different issues. I know it is heartbreaking, soul destroying, and at times you feel like giving in, but somehow dig deep, I know it is hard, but if you can keep fighting, eventually you will win the rights you and your child deserve. Trust me, I know how exhausting it is, during the last fight over his schooling, before he got put into a special school, I was on the point of a breakdown and had to go on quite a high dosage of medication. To add to the stress Chris was unable to attend school for 9 months so I had him at home 24/7. Other professionals backed me up and supported me, helped me through and after much pain Chris was schooled correctly, the difference in him is amazing.

 

On a slightly different note, do any of you who have added to this discussion, mind if I mention some of your examples in this speech I have to do on March9th? I understand if you say no, and obviously would never mention names, but it would just be helpfull to show the professionals how similiar Chris's case was to other HFA/Aspergers/ASD children who are stll struggling in mainstream school.

 

Take care

 

luv Jenn

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Hi Lisa,

 

Waffle all you want Lisa! I don't blame you. Sounds like your daughter is having a hard time at school.

 

I recall reading about parents who heard voices in there son's room, they were convinced he had someone with him, but he was alone. It was discovered that he could review the day's conversations and events. He could imitate all the voices conerned. By thinking aloud, he'd consider and review any changes to his routine, and any decision he'd made. In time, they grew to understand that thinking aloud was his way of sorting the day's information into an orderly bundle, and filing it all away for future reference.

 

Some children take on a different persona to cope. Donna Williams did this and explains it in her books.

 

It is sad that your daughter finds it difficult to talk about school, but this is not unusual. I hope you manage to sort something out with the school.

 

Thanks for your posting.

 

Nellie.

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Thanks Jenn,

 

I don't mind you using any of my postings. I have written several times about my experiences. I have managed to come to terms with the past, but that pain deep inside is still there, luckily it is only a faint flicker.

 

Best Wishes

 

Nellie x

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Hi Fairies72,

 

I would imagine your daughter feels it's too distressing for her discuss her school day- the events of her school day may be something that she wishes to leave at the school gates when the time comes for her to go home.

 

It's quite understandable really, when my husband comes home from work (an undiagnosed AS), he's quiet, doesn't talk about work and then if there's any confrontation, we realise what's caused the confrontation 2 hours later when he decides to 'get it of his chest'.

 

I feel the same way sometimes - I think it's just human nature, but where our children are concerned, it doesn't stop us from worrying about them...

 

Helen.

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Hi Jenn

Feel free to use any of the info ive posted too.Im also going to a talk on the 9th march in the kent area by a lady with autism,should be interesting.

Lisa

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Hi everyone,

I would be so grateful if I could also use some of your postings to show to some of the professionals. ( I would make sure it was anonymous).

I am so tired today fighting these people. I have just returned from a meeting with the Head of Special Needs for the LEA, only to be told that children with physical disabilities would normally have full-time SEN support. (My girl currently has 10hrs and is statemented) and that they don't actually have the funding to support my girl any further. The school feel she needs more support and have been fantastic but they only have so many staff and limited resources.

Like you Helen I have so many negative feelings which go right back to the when my girl was at nursery and they failed to admit she had a problem. These feelings consume me, especially on days like today when the help and support still isn't there- and here was me thinking I was quite a positive person!

I don't always post messages, as half the time I don't even know where to begin, but I read what everyone else writes and it is such a relief to know that other people are going through the same. ( That sounds really bad - hope you know where I'm coming from!) Thanks to you all.

Vicki

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Vicki

 

You are welcome to use my postings if you think they will help you.

 

It is so unfair that the LEA are not taking you seriously. This is so tiring for parents, I can understand how you feel. I am so sorry.

 

Meeting a child's need is not about resources. Did they say today that they would fund your child if they had more resources? If they said that then they are admitting the child has a needs which are not met. The LEA has a legal duty to meet a child's need.

 

The school say that they think your daughter needs more support, they must have reasons for thinking that. Have they put those reasons in writing and given this evidence to the LEA? Do you have an annual review soon? If not you could bring a review forward if you have evidence that your child's needs were not being met.

 

It may be an idea to talk to the NAS advocacy help line for advice or IPSEA. Sometimes it can be difficult to get through, but worth the effort. Maybe you will have to think seriously about making a video at home for evidence.

 

Sorry I can't suggest more.

 

Nellie.

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Hello Vicki,

 

It's so refreshing to hear of a school that actually wants to help. :)

 

Vicki, I think the LEA are trying to fob you off. You never hear of a poor LEA - where do you think the money comes from in relation to maladministration cases, when it has to pay compensation to parents like you and I? Money is kept back for certain reasons; I think you're going to have to 'prove' that your daughter needs the extra help.

 

If I were you, I would request from the LEA, specific reasons as to why your daughter cannot have the extra support that both you and school feel is necessary. I think it would be wise to start making 'A Parent's Report' on how you feel your daughter needs help - try to build a case for your daughter just incase the LEA decides to bring your review forward.

 

Nellie's provided some great advice already...

 

Sorry if I haven't been of help,

 

Helen.

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Hi folks,

Sorry I haven't replied to your posts before now but I have been out and about doing battle with various people. Sound familiar?

I have now approached a couple of the local councillors to see if they can help. I doubt it but I will continue to explore every option!

Helen and Nellie, thanks again for your help and support. You're both right I am not being taken seriously, but you know what , I feel stronger now than I did last week and will continue the fight!

Feeling much more positive about things. Isn't it great when you have days like that!

Take care

Vicki

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Hi Vicky

 

I am glad you are feeling more positive. Is your daughter keen to go to school, does she show signs of anxiety before she goes? The Code of Practice says if your child is at serious risk of disaffection an interim or early review should be called. Just thought I would let you know this.

 

Good luck

 

Nellie.

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Hi Vicki :)

 

I know exactly what you mean. I sometimes feel like a bulldozer without any brakes - that I'll not permit anything to get in my way - and then all of a sudden it just takes one insignifcant little incident which sets me back and then I'm disheartened for a short while.

 

With regards to the LEA, I have resigned myself to the fact that this type of 'fight' isn't going to be a short one; this way I don't have any short- lived expectations.

 

Four years ago, I would have been labelled as the least confrontational person on this planet, but circumstances change and so do people. I know that if I was offered (and had accepted) just a 'token' gesture of help by the LEA all that time ago, I wouldn't be the parent I am today - I would still be ignorant of my son's needs, instead of being 'AWARE' and independent. Every day I learn something new.

 

As I've said before, any negative energy I have drives me on, it only makes me more determined and stronger, I don't always achieve what I set out to achieve, but it 's not for the want of trying.

 

The whole issue of SEN is something that I feel passionate about - I can't help it and LEA individuals who blatently neglect their SEN duties only infuritate me even more.

 

Knowledge AND being knowledgable is the answer to everything...

 

Helen

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Hi just wanted to let you know how we got on at the appointment for my daughter re-meds and lack of sleep plus her frustrations.

I posted before how she has been coming home from school and expressing extreme frustration.Well anyway, the first thing the paediatrician said to me was that she had rung the school and spoke to the senco prior to my appointment. Apparently the senco told her that and quote 'i have observed her in the dinner queue at lunch time and she doesnt show any signs of asperger' i thought huh!!! in the lunch queue how is that going to show anything anyway.She then went on to say that my son has noticable differences but that my daughter doesnt appear to show any of these.I told the paediatrician i wasnt happy with her judgement of observing her at one time only , so am now having the school nurse visit me at home to observe (any one else ever heard of this happening ?).The funny thing is , straight after school this week , she threw herself on the floor and tantrumed right there infront of her teacher for no apparent reason.I was waiitng to see if the teacher approached , but she either thought its the end of the school day and not my concern .Or maybe she took it in without saying who knows! .After a very lengthy consultation, it seems im not really any further .She shows signs of asperger , odd and a few other things aswell.Im now waiting for a dyslexia test, speech and language therapist and camhs appointment.So have to wait and see i guess.

I went to a talk the same night by a woman with autism and she kind of brought it home that having the correct diagnosis is so important with regards to schooling.So im hanging in there and not going to offer anymore opinions until she has been seen by the specialists.

I still think we know our own kids best tho and working in an autistic school myself , and already having one child with AS , maybe i have an even bigger insight than them.I wont get the video evidence out till they totally think ive got

no idea!. Sorry to go on, just being telling them for nearly 3 years now .

Lisa x

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Lisa

 

Thanks for the update. I do sympathise with you, on your own with two children who are AS and no understanding from education. I also sympathise with your son and daughter, it can't be easy for them either.

 

I read in one of your postings that your daughter told you 'how much she hated school, couldn't do the work and couldn't remember stuff'. Would it be possible for her to document this and anything else that is relevant. Would she see this as a way of communicating her difficulties to school and professionals. Children have a right to their say. Maybe education and the professionals involved would pay attention to what she is saying especially if it is about school and her difficulties.

 

If the persons observing her have not got the expertise in ASD they are unlikley to be able to make a proper assessment of her.

 

Good luck Lisa

 

Nellie.

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Lisa,

 

You're not alone. Before my son was diagnosed we were told by the SENCO "I don't think he's got aspergers" and even after diagnosis she has continued to refuse to accept even his most obvious signs. We are now positive that his younger sister is also AS and even though the SENCO has never seen her and her teacher was the first to point out that she wasn't interacting socially, it was implied that we were reading too much about Aspergers and being hypercondriacs as far as Laura is concerned.

 

My advice to you is, don't take no for an answer. You know your child better than anyone.

 

Lisa

 

p.s. There are so many Lisa's on this site!!

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Hi all

Thanks for the replies.Im still having a time of it explaining to the teacher that something is wrong for my daughter at school.Parents evening last week , just confirmed that they still have no idea of what my child is going through.

They have been reading a class book 'charlottes web' Which she comes home and tells me she hates.Then eventually after getting to the bottom of it,it seems she is upset as they are reading a chapter a day and she has forgotten the characters by the time the next chapter comes.She also doesnt really understand the characters and what they are about.She is constantly asking the child next to her , what the story is about and obviously these children that are trying to listen have been getting fed up with her.I told the teacher again today she is upset by the book.She tells me she wants to read only cinderella (of course, she knows this story off by heart,so no thinking/memory involved) .She has actually told her teacher 'i have a very bad short term memory' which she qoutes from finding nemo.I still dont think they are listening grrrrrrrr..

Thanks for listening

Lisa x

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Lisa I am sorry, it is very very very frustrating when school staff who have no understanding of ASD will not listen. You even work in an ASD school!!

 

I was reading Jacqui Jackson's new book last night and found this line.

 

Just because school is not having a problem with a child, it does not mean that the child is not having a problem with the school.

 

The courses of action open to you are:

Ask for your child to be placed on school action or school action plus and to set targets and review progress. If you get nowhere you could write a letter to the school governors, who are responsible. Say that you believe your child has special eductional needs and that she should be receiving support, that you have discussed this with the class teacher and with the headteacher without satisfaction. That you understand the governors have a duty in law to 'use their best endeavours' to see that children with special education needs have their needs met. Give your reasons for believing your child has special educational needs.

 

As a last resort you could ask for a statutory assessement. Even if you do not get one it would highlight the problem.

 

You have my sympathy, I know how difficult this can be.

 

Nellie.

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