Help please!

[pascale]

Hi, I was hoping someone would be able to give me some advice please! My little girl (who's just turned 5) has recently been diagnosed with Asperger's (and possibly ADHD as well) and we are having big problems with her school. She is currently only doing mornings in school (and has been for the past month or so) as the LEA have given the school emergency funding of 15 per week until end of this month. I've tried to help the school as much as possible but am now coming to the conclusion that they are not doing anything to help her - in fact I think that she may be in a power struggle with her class teacher... She keeps having HUGE meltdowns which the staff can't handle, huge rage episodes etc. She's been excluded twice so far this term and I'm constantly being called to go and help to calm her down. The last incident I found out that she was restrained by two members of staff (one holding her arms and one holding her legs). They only let go when she urinated on one of them (apparently she had asked to go to the toilet and been taken but refused to go, once back in the staff room where she was being restrained she urinated on one of the TAs)... Following the advice of an autism specialist the school said that she could use a caravan on site to go to with her teaching assistant when she needed some quiet time (in a class of 23 mixed ages - very noisy and she says that it hurts her ears). However, a few days later I found that they were using it as a reward scheme (conform in school and she would be allowed 1/2 hour in the caravan). I told them on the phone that I didn't think that this was a good idea as she should be able to use it as a "safe zone" when things got too much for her. The following day I found that they had ignored my request and continued to use it as an incentive. I had a meeting with the head and made it clear that I was not happy for this to happen. I was told that the teacher believes it should be under her control to say when my daughter can use the caravan. Am I wrong in thinking that my daughter should be allowed to go there whenever she feels things are getting too much? Her behaviour has deteriorated hugely in the last month or two (although we are not seeing any of this at home) - and I have noticed a feeling of "tension" from her class teacher (the way she talks to her, she has said some very negative stuff to me as well). I'm stuck at the moment because I don't want to move schools (as we want to move from this area at the end of the school year so I don't want my daughter to have 3 new schools in one year!)... The school tell me that they have taught children with AS before but have never come across a child with my daughter's behaviour issues. I should add that she is very intelligent and they think that she is "milking" the situation. While I don't dispute the fact that she can be manipulative at times I think that it is slightly unfair to accuse a 5 year old child of this. Does anyone out there have any advice please???

[call me jaded]

What about contacting the clinical psych that diagnosed her and saying you're having huge issues, can they advise the school? Is there an autism outreach service that can go in? Emphasise that she is being restrained, has been excluded, is in danger of permanent exclusion.

 

You have made the request for assessment?

 

If you are planning to move her at the end of the year, I wouldn't expend too much energy in getting the school to change. I would write to the Director of children's services stating that she is now 5 and entitled to full-time education even with SEN and what is s/he going to do about it? Could s/he let you know within seven days how her needs will be met? Copying your local councillor, if necessary.

 

Could you have a chat with the teacher along the lines of 'yes this does appear to be manipulative behaviour, but from everything you've read that is perfectly usual ASD expression of frustration due to the severity of the communication difficulties and that reacting to it is re-inforcing it, so can we work together on agreeing some strategies that will help'? I'm thinking of perhaps a PECS card when she needs the toilet.

[pascale]

What about contacting the clinical psych that diagnosed her and saying you're having huge issues, can they advise the school? Is there an autism outreach service that can go in? Emphasise that she is being restrained, has been excluded, is in danger of permanent exclusion.

 

You have made the request for assessment?

 

If you are planning to move her at the end of the year, I wouldn't expend too much energy in getting the school to change. I would write to the Director of children's services stating that she is now 5 and entitled to full-time education even with SEN and what is s/he going to do about it? Could s/he let you know within seven days how her needs will be met? Copying your local councillor, if necessary.

 

Could you have a chat with the teacher along the lines of 'yes this does appear to be manipulative behaviour, but from everything you've read that is perfectly usual ASD expression of frustration due to the severity of the communication difficulties and that reacting to it is re-inforcing it, so can we work together on agreeing some strategies that will help'? I'm thinking of perhaps a PECS card when she needs the toilet.

 

Hi, thanks for that. I need to find out about autism outreach, I've not heard about there being a group around here but I'll look into it. She has been referred for assessment, I'm due to call the LEA tomorrow to find out how the process is working and whether they can speed it up in a crisis!

 

I'm going to have a meeting with her class teacher and the head on tuesday to get this sorted out - thank you for your reply and support - school making me feel a bit like an overprotective mum at the moment!

 

Thanks again!

[westie]

Hi, <'> for you. I am sorry to read about the terrible things yr daughter is experiencing at school(in my opinion the way the teacher is acting is awful - the caravan should indeed be somewhere to go if she needs to retreat not a motivation) and why cant they use pop up tent, other quiet area - my son used to go to a small area outside head office when he was in infants school - , where she could use music to drown out noise, or some other calming activity till she is able to come out again and where she can be safe until she ready to move back into class..

 

In yr meeting with the head (or perhaps phone if that teacher going to be in meeting and you do not want to say in front of them!) could you ask whether it possible to move her to another class in same school. With my eldest son, the teachers handling of him makes all the difference, and a more understanding teacher may help her to remain in school till you move with less stress and outbursts ,

 

I can see yr point about not moving her to another school at present if it will mean another move after, also not sure of your circumstances which may mean this is not possible but

 

.....have you considered whether you can home educate her till you get statement sorted, and then when you move you can find new school in new area that are able to meet her needs enabling her to get away from horrid env.? Perhaps if not too far a move from yr current home, then would LEA consider transporting to and from a school in the area you moving to, so you could start looking for suitable schools as soon as possible and avoiding another move for her.....

 

I know someone who had to do that after the school relationship broke down so bad and she described it as a positive experience. At this time of home ed. her child was diagnosed, a statement put in place and they found a placement in a school with a resource unit attached, and child is still in same school,. She had not done anything like it prev. but remember she got good advice and support from some home ed. group (cant remember but could ask if you were interested but think there is info on her about home educating)

 

I am not sure how the statementing process would be affected by this, would you be supported in any way if you did this such as home tutor etc? I have not experienced home ed. myself and it may be something you would never/ could not consider but just thought I would post it as a possibility as it seemed to be of benefit to my friend.

 

(think the overprotective mum/ parent feeling must be common to many on the forum, I too get that feeling esp. when I talk to school!)

 

Take care and good luck with the meeting on tuesday X

[call me jaded]

She has been referred for assessment

 

 

You could find out if anyone has actually put a request in, rather than put her on the waiting list to put a request in. If it's the latter then you can make the request without waiting for anyone. The assessment clock does not start ticking until a formal request is made.

 

More on IPSEA's website.

[westie]

btw your daughter sounds very much like my son at that age - my eldest with PDA I mean. You must be handling her better at home if she co-operating and not having meltdowns it must be either the environment she cant cope with ( or it is the teachers handling of her that needs correction. It is really important with my PDA son that we be less directive and make him feel he is in control whilst being "manipulating" ourselves in how we approach situation to get the outcome we desire and reduce the anxiety he experiences by him feeling that others are in control! (also flexibility to learn and use number of strategies and switch tactics if one thing is not working)

 

Input from the autism outreach team would help with either, perhaps teacher may listen if they are giving advice on how to handle her.

 

As things seem to be going well for you at home in that she is not having the meltdowns etc, could you explain to them how you manage her at home and they may be able to try some of those strategies for themselves? Or on reflecton your opening post suggests that you may have done that and they ignoring you...

 

Have you done earlybird course? I did and its really useful, they talk about ICEBERG technique to analyse behaviour and understand why your child reacts a certain way. The iceberg is a simple drawing of an iceberg triangle with small top part above line - represents obvious visible thing -and in this you write the behaviour you are analysing i.e. "she had meltdown about going to toilet" then underneath the line you write the "hidden" stuff - this is the important part where you brainstorm all the things that may have caused/ contributed to the behaviour. This helps you to focus on real causes behind a certain behaviour, and plan on what you can change if this is possible, or plan strategies that will better help her/ her teacher cope if it happens again.

 

The school certainly could do with learning this: the incident you describe about the toilet has not been fully understood by them has it? perhaps there was something in the toilets that scared her/ raised anxiety and that is why she changed her mind about going. Unless they stop with the mindset that she is just being difficult / manipulative and be prepared to accept she needs different handling then things are going to remain the same. This is sad...

 

If you do know a bit more about the toilet incident (and because you understand more about your daughter and how/ why she may have responded as she did) could you possibly "brainstorm" and write down all the reasons/ things that could have caused the reaction she had, other than "she was being manipulative". They may not fully understand that little things, esp. if child in anxious already, can cause major meltdowns. Someone else unexpected in toilet may have caused her to not want to go, toilet may have been dirty, teacher may have got too close to her, maybe too many verbal commands when she unable to deal with it, noisy corridors she could not cope with etc etc etc)

 

 

 

Also one last thing: reading some more about PDA (there is some info. on NAS site, plus links to help forum and educational handling guidelines) may give you some useful strategies to try / suggest to school. Know this is not diagnosis but yr description of her behaviour leads me to believe these worth a try and may help (certainly cannot harm to try!)

Edited March 15, 2009 by westie

[westie]

If you have a parent partnership they may be able to help and advise, or contact NAS branch in yr area who would be able to point you in right direction to get help from outside if you feel you need it (i.e. support during visits to school etc)

[heleno]

I think you should be making arrangements to see the school SENCO - every school has one and it is they who arrange special needs provision. Every child with special needs has the legal right to expect the school to make reasonable adjustment to the provision they would make for a 'normal child'. what reasonable adjustment have these people made to allow your daughter to access inclusive education in a mainstream school? We have a child who is thriving and achieving in our school who in a previous school was left to sit in his own mess on newspaper till his mother came and cleaned him. We repaired the damage and provided the correct support for him to be truly included, and he is lovely and happy. There are schools who can be inclusive and those that need to learn more. We have to keep fighting to educate the educators.

[teresa london]

Hi, its very upseting to know how people in particularly in schools are so ignorante. Unfortunatly, I have been having problems with my 6 year old, he turned six in January. He was crying his eyes out in the classroom when I went to pick him up, the other day because he had been put in this dark ugly room. He is very sensetive to enviroment. I complainned but not much has been done yet.

 

I have read posts in other sites, as well, and seems that schools are totaly ignorante. How is it possible! We should all join forces and complain to the education MP. This is the type of issue that is constantly adressed "Every Child Matters", but it doesn't seem to be the case, in practice. Many of the issues that happened in school is in fact a social services case against the teachers but somehow they are always protected and the parents are left in limbo.

 

I am very angry!

[lisac]

im my experience, schooling in this country, sometimes does more damage than good,

[lynne]

 

 

The school are not handling your child sensory issues correctly therefore she is getting distessed and anxious which results in bad behaviour. They need to look at what was happening before your child got upset, this would point them in the right direction.

 

There may have been too much noise, someone may have knocked your daugher, instructions off the teacher may no of been clear which causes your child confusion and anxiety.

 

Children with sensory difficulties are very difficult to accomodate in a normal school setting. but it can be done with thoughtfull teachers but they need guideance from specialist.

 

You need to bring this up at the meeting.

 

The caravan should definatly be s used to prevent your child becoming stressful. Certain day or time periods can be worse. You need the school to clearly document what happens, how it was handled (what was happening that day) also what was your child doing before the incidence. That way they may be able to build up a picture of what is really bothering your child.

 

Children with sensory difficulties have hugh problems using the toilet.

 

Sometimes you can not identify what caused your child anxiety but with my child it could of been related to an incident that occured at play time.

 

[pascale]

Hi, big thanks to everyone for your fab words & support. The diagnosis has now changed from Asperger's syndrome to PDA... Feel relieved to have the right diagnosis, but now we've got a new set of issues to deal with. Thanks Westie for your pointers on PDA, since the school have had information on PDA they've amended the way they deal with her. Everything was going really well til yesterday when she lost it and attacked another child. She's now been excluded until next week (emergency multi-agency meeting to find way forward). On a positive note though, she's just been stood at the hedge in the back garden singing Beethoven to a group of 30 young cows... At least she still makes me smile!

 

Anyway - thank you everyone!!

 

XXXX

[docfraser]

i have had the same problem i live in scotland so itmight be different my son has been diagnosed with dyspraxia,ahad and possable austium . he is curenly on exquam xl tohelp maintain is consentration because of his impulse behavour he goes to mainstream education but has a one to one with him he stabbed the teacher with a pencil on her hand for no apparent reason so he got sent home he is now 7 years old and the head teacher of the school is always complaining about him. You have to develop a very thick skin. I have been to countless ieps and all that is ever discussed is the problems with his behavour and how it affect the rest of the class. he tends to over reaccted to the slightest little thing his main problem is anything new the schoolare aware of this but he cant accept it. You just have to keep on at them even threaten them with going to the papers. Also the school say that e is dictating what he doesin school and they say he cant do that but what they dont realise it is his condition that makes him that way. best of luck

[Sally44]

It sounds like your daughter is in a school that has no experience or expertise in ASDs or ADHD.

The caravan is supposed to be used as a strategy, so that she can go there to calm down. Expecting her to 'recognise' when she might need it shows their ignorance. She has difficulties with language and social interaction which are part of her diagnosis. She won't be able to logically reason things out and decide that she needs to go to the caravan!

She should have a dedicated key worker, not different members of staff all the time. And the dedicated key worker will establish the school routine with her and will put together all the visual timetable and other supports she needs. Once she is coping with that TA, they can begin to generalise certain things out to other TAs, but the main dedicated TA should remain the same as they will get to know and understand your child.

15 hours a week is nothing. She should be fully supported throughout the day.

Have you had detailed reports from a Speech Therapist and Educational Psychologist which details all her needs and gives recommendations on how school can meet those needs?

Does your daughter have a Statement of Special Educational Needs?

If not I suggest you contact the National Autistc Society. A Statement is a legal document which should contain all your daughters needs and how she should be supported. Because it is legal, the school has to do it in the way it is written. You also need the Statement to be very specific. The LEA will try to make it vague. But get advice from the NAS about what it should contain and how it should be worded.

The NAS and the Parent Partnership do seminars on the special educational needs process that is worth attending.

It sounds like your child needs a different school, and you need a Statement to get a place at an Enhanced or Special Needs school. Enhanced Resource is mainstream and children with ASDs, they have higher teacher to pupil ratios and experience and expertise in ASDs.

Although the mainstream school 'should' be doing things right, the fact is that they have no experience, and it will take years for staff to be trained to a level that they understand ASDs, and how they affect your daughter. Most parents can't wait for that. So I would contact the NAS, start the Statementing process, and look around for more appropriate schools.

Regarding medication. I am not anti medication as some children need it. But I am totally against any medication given to a child to help them cope in a mainstream school that isn't meeting their needs or supporting them enough or being autism friendly. Medication should never be given to make teachers life easier. If the school cannot cope with a child off drugs then maybe the school is not the right one.

Regarding sensory issues. An Occupation Therapist should assess for this. There is alot that can be done ie. low arousal classrooms, teaching in small groups, work station, head phones, Irlen glasses or overlays etc. I would also recommend a book by Olga Bogdashina called Sensory and Perceptual Differences in Autism and Aspergers. This book has a caregivers questionnaire at the back that you can complete to get a sensory profile of your child. The Autism Outreach Department in my city uses this questionnaire, so I know it is reputable.