I need some hugs...life feeling tough

[Karen A]

Hi all.Things feel very tough and I am in need of some moral support.

I will try to summarise.

Camhs were not able to decide when Ben was assessed a couple of years ago on a clear AS diagnosis.

There was a possibility that he might have attachment disorder and we embarked on psycholtherapy in order to see whether it would help.

The psychotherapy has been a major commitment and extremely hard work for the last eighteen months.

It now appears from feedback that we are getting that Ben does not have attachment disorder after all.

He probably does not have AS either but he does have some Social Communication Difficulties related to the Dyspraxia [Dyspraxia has been diagnosed].

We are waiting for an appointment for a 3di in order to obtain a clear decision on the AS dx.We expect the appointment will be in August.

The 3di will be the third assessment we have been through.

 

Ben is very unhappy at school and was almost excluded last week.

He is currently either unable to work or refusing to work in class.

School appear to be looking to OH and myself to manage the situation in school.We are getting almost daily reports about issues in school.

Ben has a statement and is supposed to have fulltime TA support.

I do not know how I am supposed to know how school can support him.

I don't know whether we are supposed to punish Ben at home for not working at school but cannot see how making home life difficult when he is unhappy at school will help.

Ben's dad is only coping at work because they are supportive.

 

We have a meeting next Monday to attempt to sort out whether school will be able to provide a manageable environment for Ben next year but I am wondering whether we may end up having to ask for an emergency review of the Statement.

I am very fed up...we as a family are doing all we can.Ben is challenging at home when he is not happy.OH and myself are tired out and I don't know what to suggest to school. Karen.

[warrenpenalver]

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[smiley]

Blimey hun - no wonder you're feeling in need of hugs <'>

 

I have a similar problem with M's school at the moment. But i've done, and suggested all i can - not much else i can do without actually being there!

 

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[JsMum]

<'> <'> <'> <'> <'> <'> H U G G S H U G G S H U G G S H U G G S H U G G S <'>

 

Its certainly draining and stressful, I have been there with Jay with reguards the situation with school, is there any reasons behind the issues of not wanting to work or refusing to work, could any equiptment help, lap top, specialist pencil grips ect...

 

Are you recieving IEPs and does it provide any evidence to proove that Mainstream is just not working anymore.

 

I would look into having a look at some specialist schools to compair the different aproaches, the school I have chosen for J doesnt actually run like a school, its informal, relaxed and a much less busyness.

 

What about a break, as there is only 4wks to go now, could the gp sign him off school, explaining the increased behavioural difficulties, did the psychotherapy have any suggestions in relation to settings of a mainstream on a child with Social and communications, difficulties.

 

Do you feel he does have AS?

 

Would you like him to remain in a mainstream or attend a more specialist school?

 

For us as a family if J is unhappy at school he displays it in his behaviour at home, sleepless nights, panic and worry, at the moment we are just managing to get him to school, he is there for 2 and half hours and some days we dont make even that but at the same time on good days he does attend and there has been slow progress.

 

The behaviour is probably tied in with school issues and its frustrating on all that are involved, but I cant see how explelling him would benefit Ben, so why are they going to do this, what are they expelling him for?

 

I would maybe look at a break from school, as I think this could be the stress factor.

 

JsMum

[bid]

Oh hun <'>

 

Bidx

[baddad]

<'> >< <'> >< <'> >< <'> >< <'> ><

That's the easy bit... sorry, haven't a clue on the other stuff
Personally, as a general rule I tend to believe 'school is school and home is home' and misdemeanours in one environment shouldn't travel to the other. That doesn't mean you can't discuss 'em, or that home and school shouldn't be mutually supportive or have agreed sanctions/responses etc, but the implementation of the sanctions should, I think, be environment specific - otherwise the pressure never lets up

Hope that's helpful

BD <'>

[justamum]

Personally I would take JsMum suggestion and get him signed off. During this time sort out some home eduction. No strict book hitting but spontaneous as you can learning ie a spot of gardening and learning the life cycle of a plant, insect or what ever you see. I say this because he sounds a prime candidate for educating by other means.

 

I deregister my son just before Christmas. His stress level and plummeted to practically zero. He is enjoying life once more and the proof is in that before I deregged him getting him to dress for school was struggle. He now is dressed 3/4 hour earlier than before WITHOUT being told!

 

Oh and he has just asked if we can help his sister get prepared for her High School after the holidays

[Suze]

I,d push for an emergency review of his statement.......get the school on side for this if pos, ................as awful as it sounds time maybe the biggest indicator of AS..............what I mean is the older he gets and the more he struggles the more apparent hie AS may become, it has certainly been the case with my son,......hope you get somewhere with this latest assessment, best wishes suzex.

[Kathryn]

Hugs coming through Karen

 

<'> <'> <'>

 

I hope the meeting next week will result in some positive suggestions - it sounds as though everyone is looking to you as parents to lead the way - that's tough.

 

Is he actually getting the full time support that's in his statement? You sound as though you're doubtful of this.

 

K x

[Karen A]

<'> <'> Thanks for all the support it helps a lot to know there are people who understand.

I will read through the posts again later but need to rule one out....home education is not an option.

Ben is very bright indeed.I love him dearly but he is exhausting.I cope because I have some space in the day time.I would be burnt out in a matter of weeks if I attempted to home school him.

The school already have specialist teacher input because the specialist SALT felt Ben had sufficient AS features on the ADOS to warrent ASD outreach input.

Camhs are very good indeed and the Camhs psychotherapist that works with myself and dad is coming to the meeting on Monday so that should help.

I could ask for an emergency review and might do if Monday does not go well.However I am reluctant to do so because we probably will not be able to make much progress without the results of the 3di.

OH has had a talk with Ben tonight.He thinks it is a case of the school not understanding why Ben gets stuck rather than him refusing to work.

Ben may be advanced in literacy but if he cannot figure out how to answer the question then he is still stuck...and giving him ideas does not work if it does not fit with his agenda.It is frustrating for all...but then that is why he was funded for full time support.

Thanks again. <'> <'> Karen.

[Flora]

Karen can't add to the excellent advice already given but have some more of these...

 

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Flo' xx

[Karen A]

Hugs coming through Karen

 

<'> <'> <'>

 

I hope the meeting next week will result in some positive suggestions - it sounds as though everyone is looking to you as parents to lead the way - that's tough.

 

Is he actually getting the full time support that's in his statement? You sound as though you're doubtful of this.

 

K x

 

No.

You may remember a post I posted some time ago.

Basically...Ben funded for about 20 hours topped up to full time by delegated funding.

Early in the year Ben's TA left and class TA took over supporting him and was not replaced.

So no class TA.

LEA said this was allowed as no legal requirement to have a class TA.

Things have been manageable because Ben had been coping pretty well for most of the year....although how much time TA spent on class stuff you know as well as myself.

Now Ben needs the support the TA is doing two jobs....I am afraid the HT is in a bit of a pickle....I could call an emergency review just to be difficult.

The LEA told me last week that as a parent I had a right to ask questions about how come my child with full time support and a statement was being threatened with exclusion.The LEA told me I could go to tribunal if school were not fulfilling their duty within disablity law.

Of course after all this time reading your excellent advice I knew that already Kathryn. Karen.

[pookie170]

Cant give any advice, other than whats been given already, but <'>

 

Esther x

[cmuir]

Hi

 

Sounds like you're having a really tough time and like you've been messed around by CAMHS.

 

This probably isn't helpful or constructive of me saying this, but my experience of CAMHS was not a positive one. I genuinely believe, had I continued with their sessions, that they've had screwed me and my son up even more than we are just now. I think they have a lot of theory, but very little practical experience - that's what makes parents the experts in some respects. I think it's unfortunate that CAMHS don't always listen or take onboard what parents tell them. Basically, a lot easier said than done, but in my quest for a diagnosis for my son, we were past from pillar to post over a period of two years. I couldn't think about anything other than getting some answers as to why my son behaves/d the way he did/does and really felt like our lives were merely an existence and not lives! ... That is, until someone on the forum (she knows who she is - I'm extremely grateful to her!) passed on the name of a consultant who was apparently very good. Unfortunately the consultant was off on long term sick leave, but I kept phoning every few weeks and hey presto one day spoke with her and she carried out an ADOS, read lots and lots of reports, etc before finally diagnosing AS. I found that as soon as we got that diagnosis, suddenly doors started opening and it gave us a lot of amunition to ensure that my son got the support he needed at school. Whilst a diagnosis shouldn't matter, it seems that in a lot of cases, you need a label before things start happening.

 

Guess what I'm saying is that if you don't feel like any progress in terms of a definitive diagnosis, try and get other professional opinions (I know it's easier said than done).

 

Best wishes.

 

Caroline.

Edited June 17, 2008 by cmuir

[Enid]

Karen, when my son was exlcuded from school, after the shock it was a relief, as at that time he was no problem at home, but now, well I`m with you on this one, it is the only thing that is keeping me sane. The break I get when he is at school. When he was at primary school every evening it was an endless moan about his behaviour, I came up with a "score" chart. He was to get a score each day, 1-10, they used to write it on his hand!!, 8 and over and he got to stay up an extra half hour and play cards with me, 5 and under and it was an early night, this worked really well for us as there was not so much endless telling of the things he had done wrong each day, we had a chart at home with an adjective for each number, I0 was superb, 1 was appalling, it worked for us, till he got excluded Sending you lots ot these <'> <'> <'> <'> <'> Enid

[Karen A]

Hi

 

Sounds like you're having a really tough time and like you've been messed around by CAMHS.

 

This probably isn't helpful or constructive of me saying this, but my experience of CAMHS was not a positive one. I genuinely believe, had I continued with their sessions, that they've had screwed me and my son up even more than we are just now. I think they have a lot of theory, but very little practical experience - that's what makes parents the experts in some respects. I think it's unfortunate that CAMHS don't always listen or take onboard what parents tell them. Basically, a lot easier said than done, but in my quest for a diagnosis for my son, we were past from pillar to post over a period of two years. I couldn't think about anything other than getting some answers as to why my son behaves/d the way he did/does and really felt like our lives were merely an existence and not lives! ... That is, until someone on the forum (she knows who she is - I'm extremely grateful to her!) passed on the name of a consultant who was apparently very good. Unfortunately the consultant was off on long term sick leave, but I kept phoning every few weeks and hey presto one day spoke with her and she carried out an ADOS, read lots and lots of reports, etc before finally diagnosing AS. I found that as soon as we got that diagnosis, suddenly doors started opening and it gave us a lot of amunition to ensure that my son got the support he needed at school. Whilst a diagnosis shouldn't matter, it seems that in a lot of cases, you need a label before things start happening.

 

Guess what I'm saying is that if you don't feel like any progress in terms of a definitive diagnosis, try and get other professional opinions (I know it's easier said than done).

 

Best wishes.

 

Caroline.

 

Thanks Caroline.I understand what you are saying but am not worried about Camhs at all.

The support we are getting is excellent.

Without going into details there are very good reasons indeed why it has taken a long time to get this far....it is very complicated indeed.

Until recently we would have very probably needed to go to a regional centre for a 3di.

We had an ADOS but the professionals could not agree on the results .....despite all being very good.Karen.

Edited June 17, 2008 by Karen A

[smiley]

K - have another squidge.... <'> >< <'> ....i have lots to spare.

 

[Bagpuss]

Karen <'>

[hev]

[

 

but the implementation of the sanctions should, I think, be environment specific - otherwise the pressure never lets up

totally agree with that,when steve was at primary i used to punish at home for what he did at school untill mossgrove said the same sort of thing to me whats written above and i realised he was not coping at school and coming home to me and getting punished all over again!!

 

im sorry you going through this karen <'> <'> wish i had more advice but i know what you going through and the pressure is terrible isent it <'>

[Karen A]

Thanks all. <'> <'> Karen.

[bikemad]

<'>

[bluefish]

Whish I had some answers but sadly dont. hang in there and good luck. <'> <'> <'> <'>

[gothschild]

Karen,

I'm sorry that things are so bad <'> <'> <'> <'> <'> <'> <'>

 

gothschild x

[Karen A]

Thanks so much to all of you.I remember many hours spent on a certain broadband help-line being told at regular intervals that my call was important to them. ...well all of your good wishes are really important to me. <'> <'>

[Cariad]

<'> >< Karen I hope things turn around for you, I hate going out of my mind with worry when it comes to T..

[JsMum]

About the punishments been taken home for actions done in school.

 

In Jay No1 school, they gave pink slips if their behaviour was poor, this was the HTs way of giving the parent the option of further consequences if they so pleased, it was a seriously religious school, and many children were sent to bed early, or given no supper or prevented pocket money if they took these home, Once I heard a father call his son a stupid boy, because he had one, and another one got frogged marched all the way home, took his clothes off and was sent to bed, yet other parents did not do a thing, one been me, As I knew most of Js came from not coping in the playground, and some confrontation took place and J retaliated, I requested more support at break times because a lot of them(if not all of them) where been taken off him, and so when he was finally allowed to play outside he was like a caged escaped lion, rawing in a rage, anyone that came in a claw distant got a scratch.

 

Obvously J then was given another pink slip, and kept in another playtime until the cycle repeated, so he got these all the time, I would of had to punished at home all of the time, which when he came home he was already behaviourally difficult that led into consequences and that later led into challenging behaviour, so adding on punishments on top I wouldnt of got round to putting it in place throw dealing with his already behaviours that resulted from a day that wasnt supported enough already.

 

Now if J came home with a green slip, that was an achievement, I praised, verbally and then rewarded him with a small toy or faviourate comic.

 

For me behaviour that is poor in school is usually a result of some need not been met, or the child is expected to act, conform, be normal in a normal enviroment, where there is most of the triggers that set off Js sensory,behavioural, social, emotional, mental, learning difficulties.

 

If its got to the stage with a statement in place, a TA and the school supporting him and the school wanting more punishments at home because of how he performed at school you have to ask yourself is he in the right place anymore with the right people helping him because I know that for J if I was to increase the punishments at home for things he had forgetton about doing in school, we would have a riot on in the house and he would aviod school like the plauge.

 

Bottom line is the school enviorment maybe the cause to his behaviour already esculating at home, so for me if you do punish him at home for things at school be prepared for it to get a lot worse at home.

 

 

JsMum

[Karen A]

Thanks Jsmum.

We have decided that the priority is to try to ensure that appropriate support is provided at school.We are having a meeting on Monday to see if the current difficulties can be resolved.If we cannot make progress then we will need to look at other options for next year.However I don't think Ben wants to move as he has worked hard to develop friendships this year.He only has one more year at primary so it would be very unsettling moving for one year.

The one positive thing is that we think we have found a secondary school that will be fine.We just need to try to manage the next few weeks and next year. Karen.

[JsMum]

Thanks Jsmum.

We have decided that the priority is to try to ensure that appropriate support is provided at school.We are having a meeting on Monday to see if the current difficulties can be resolved.If we cannot make progress then we will need to look at other options for next year.However I don't think Ben wants to move as he has worked hard to develop friendships this year.He only has one more year at primary so it would be very unsettling moving for one year.

The one positive thing is that we think we have found a secondary school that will be fine.We just need to try to manage the next few weeks and next year. Karen.

 

 

 

I dont want to worry you too much, but for Us year 6 has been major hard, and if anything this has been where the Autisitic Traits have showed throw the most, as his friends mature and gain more complexities in conversations and use sarcasm and jokes Js standing on the side lines wondering why on earth his peers are in fits of laughter, he doesnt do conversations and so others dont really include J in their topics, and if J does talk about a topic he doesnt let others get a word in edge way, and before long he is talking to a grassfeather, not understanding his peers have long gone, he has struggled loads more socially and he acts so much younger than his friends now that others are put off joining in because they are starting to grow out of the behaviours J loves doing the most, which usually involves action heros, in class the works got harder, more complex questions, more explanations needed and the expectations of teachers are massive because he is a year 6 student and should know better, but he doesnt and doesnt understand that comment, why should I mum, and its when I explain its because he is the oldest he just says thats silly.

 

This year the gaps have got wider, leaving J well behind and he is starting notice that now, I cant say your situation is going to be similair but for us it just got harder, more meetings have happened this year than we have had in five years, the planning the teachers have had to do and the changes that have been made are sometimes still not enough, J will not get his needs met in a mainstream secondary school because of the whole setting, he wont be in the right setting to learn, socialise and understand the world he is entering closer and closer as he gets older, thats why we are going to try and enter specialist schooling, as we know that the gaps just too great for J to ever catch up, the expectations will cause meltdown and J will withdraw and become mentally effected.

 

JsMum

[Enid]

I too found that that my J`S autisic/adhd traits became more noticiable in yr 6, in fact he was excluded in that last year at school, so I would really agree with your comments J`s Mum. Enid

[Kathryn]

Good luck with Monday's meeting, Karen. I hope something comes of it. If not, an emergency review might shake things up a bit.

 

K x

[Karen A]

Thanks all.

It would be very difficult to find specialist provision that will meet Ben's needs unless we attempt to go down the residential out of area route.

There is very good ASD specific provision in the borough that I know well.However I don't think it would meet Ben's needs.

Ben is a bit unusual.Although he has social communication difficulties he is very bright indeed.He is able to produce literacy work on the computer that is more advanced than our 12 year old...who is very able.Ben's expressivelanguage was assessed as age 16-21 when he was 7.

Children at the specialist provision tend to have ASD rather than AS and the curriculum reflects this.I think Ben would be extremely frustrated.

In any case access to specialist provision will depend on the outcome of the 3di which is not until August.Ben currently has access to ASD outreach teacher from the school.However even that might be open to review if the 3di does not show an AS Dx.

 

Thanks Kathryn.Yes I think that if the meeting does not go well then an emergency review may be the next move. Karen.

[Frangipani]

Good luck with this Karen. It always annoys me how difficult they can make things. There is enough stress in the family and getting the right help sometimes you feel totally alone. You really are on your own and just have to keep banging on doors and complaining.

 

I would be inclined to let him stay home the last four weeks. No loss really.

 

When things like this go pearshaped, have you considered talking to your local MP and disability discrimmination, as they often have a bit of muscle when 'the authorities' become disfunctional.

 

Hope this stress is over soon and some good comes out of this awful situation.

 

Fran x <'>

[loobylou2]

<'> Hope things settle down for you Karen. <'>

[LizK]

<'> <'> <'> nothing useful to add but didn't want to read and run

 

Lx

[Karen A]

Thanks all. <'> <'>

We have some good news.A teacher is leaving who we thought might be teaching Ben next year...they do not understand each other well.So it helps relieve some of the anxiety.

However there were incidents of one sort or another every day last week with different staff in school.

Think of us in the morning.I have a bug and have virtually lost my voice.It could be a good thing as OH is rather more calm than myself.

Karen.

[Zosmum]

Good Luck with everything in the morning

Will be thinking of you

[hev]

I too found that that my J`S autisic/adhd traits became more noticiable in yr 6, in fact he was excluded in that last year at school, so I would really agree with your comments J`s Mum. Enid

yeah steves problems hit a peak at year 6 leading to exclusion