Son not attending school

[Sally44]

My son is currently out of school.

He is suffering from extreme levels of anxiety.

Clinical Psychology told me that I must not force him into school anymore because it was causing him psychological damage.

I agree with what CP have said because I also knew that it was the end of the line and he could not longer continue in the state he was in. But that was the only way of getting him into school.

This is his second week off school.

Remarkably he has begun to sleep in his own bed for the first time in his 10 year old life! This I am taking as a good sign.

But he is extremely volitile and is showing a regression in autistic behaviours and avoidance behaviour over very simple every day tasks. He is even refusing any TV films or programmes that are new because they are making him anxious. I never thought he would refuse TV.

 

I have today received an email from the SENCO saying they are expecting him back in school asap. But all the things identified by CP and CAHMS have not been resolved. He is in no state to go back to what he could not cope with.

 

CP and CAHMS have written very strong letters about how he has not been supported in school. But school is in denial. The CAHMS letter details a list of 'profound' difficulties. Whilst the school email is saying they "have no concerns".

 

I don't have another meeting with CP until March.

 

Do I need to get a sick note, or contact someone in the local authority. I don't want to get into trouble by not following procedure, but no-one is telling me what I need to do.

[puffin]

Does he have a medical certificate authorising his absence?

[caci]

We ended up in a similar situation.

 

I asked our GP and CAMHS to write to the EWO (education welfare officer/truancy officer), but unfortunately she would not accept their letters as evidence that anxiety can affect our 12yr old son's school attendance.

 

If your GP would write an actual sick note or certificate you would be covered, but ours would only write a letter.

 

Would the clinical Phychologist write a letter for you ?

 

It is very important to get medical people to support you in writing, as without proof, the EWO may decide to prosecute you for your son's non-attendance.

[JsMum]

Sally I am in similair situation to yourself, J has a Medical Cerificate to prospone the return to school, but today as I am desperate for respite Ive been told by Social services we cant access any other respite than his residential school, he has a sick note but the social services are forcing J to return back to school even though he has already identified anxiety and behavioural concerns.

 

Its rediculous, are you coping at home with him without any support? because I am finding the 24-7 care very draining and exhausting. I know what your going throw going throw it too and we have medical back to say he shouldnt be in schoolx

 

JsMumx

[Sally44]

I'll make an appointment to see the GP tomorrow.

If she cannot do something I will write to the CP department.

I don't have an appointment to see them until mid-March and they have said I must not force him into school.

He wouldn't agree to go anyway.

But as per usual, no-one gives you any idea on what you are supposed to do.

My GP has now referred to social services and there was a Multi Agency Team yesterday and apparently social services turned up!! Never met the person!

 

The 24/7 aspect is very exhausting. That is why I went to the GP with a list of things we are not coping with. I had decided not to get tearful, but found myself crying in the waiting room before I even went in.

 

CP and CAHMS keep saying to keep very calm with the things he is saying and doing, but it is very hard. And being alert to what he is doing and where he is in the house and locking doors and windows etc is tiring. I can't keep this up indefinately. Every stage we get at I keep thinking "it can't get worse" and then it does!

Edited February 9, 2011 by Sally44

[Kathryn]

Legally he has to be in school so getting a sick note is important or the absences will be recorded as unauthorised and action could be taken against you. Hopefully you have enough medical evidence to make that unlikely, but some schools and LEA's take a hard line and you may get a call from the EWO to discuss it. You could always pre-empt this by calling them yourself to explain the situation.

 

Whatever happens it's wise to keep a file of evidence to show why your son isn't in school and what you're doing about it in case anyone takes it further.

 

You might find the following information on the ACE website useful. Also take a look at the downloadable School Attendance booklet fom the link on the right of the page.

 

http://www.ace-ed.org.uk/advice-about-education-for-parents/School_Attendance

 

K x

[bid]

Hi Sally,

 

You must get formal letters from your GP and preferably the CP outlining that your son is medically unfit to attend school.

 

If you don't, the LA are quite capable of saying that you have voluntarily withdrawn him from school and thus they no longer have any responsibility for his education.

 

We successfully handled a similar situation when my son was in secondary mainstream and he had a breakdown. You should also be aware that if a child is out of school on medical grounds the LA have a legal duty to supply a home tutor after a fixed period (can't remember how long). Every LA will have a department called something like 'Hospital and Home Education'.

 

I can't stress how important it is to do things exactly by the book in these circumstances.

 

Very best,

 

Bid

Edited February 9, 2011 by bid

[Kathryn]

You should also be aware that if a child is out of school on medical grounds the LA have a legal duty to supply a home tutor after a fixed period (can't remember how long).

 

Good point. It's 15 school days - but they should not necessarily wait until that period of time has expired before they arrange something.

 

K x

[dana]

Hi Sally,

 

<'> >< <'> >< <'> to you and your son.

 

Danaxxx

[JsMum]

Sally just to reasure you about the Home Tutoring, J is now accessing this, he should of recieved his first session but we had a GP appointment and so it is sceduled for tomorrow and Friday, the home tutoring service have been amazing and fantastic, they are use to experiencing children like ours and the tutors are well matched, they have given J his own one to one personal tutor and just the one tutor so hopefully they should get to know each other well, I will let you know how it goes, its early days and just a couple of hours this week and then increasing over time but we only have this place until after half term, so not sure what happens after thatx

 

But just letting you know if you can access any form of GP letter proving that you are trying you best to get him into school or that your son is too stressed and anxious to be at school then your LA do have a duty to provide Home Tutoring.

 

So good luck, and I hope you can access some support at home, ensure you request a Carers Assessment to see if you are entitled to respite.

 

JsMumx

[Sally44]

I spoke with CAHMS last week and the consultant psychiatrist was very firm on the point that her letter says clearly that his difficulties are due to inappropriate educational support and lack of OT input. She said she did not feel he was depressed and did not want to give him such a label when it was very apparent that his needs were not being met in school.

 

I also went to see my GP who has been marvelous over the years. She spoke with CAHMS and the LEA and is writing them a letter saying that it is their opinion (GP and CAHMS) that he is not fit to attend school and that if attempts are made to return him that he would most likely deteriorate.

 

I am going to be sent a copy of that letter. That should cover us and give us some time. I could not believe what the LEA inclusion officer was saying school had told her. I had not 'refused' school access to my son. Infact school never even asked for that. They offered to do a referal to social services (I first asked them to do this in 2009) as they 'realised' this had not yet been done. I had had to go to my GP and ask for an urgent referal as I felt the family were in crisis.

 

We've got a team meeting this week. I haven't been sent any information about it. No idea who has been invited to attend, no agenda.

 

I was wondering what the position is regarding recording these meetings. The last time we asked for minutes to be taken everything we said was omitted from those minutes. I am wondering if it would be a good idea to take a recorder with me, or whether that might be counter productive and everyone might clam up.

 

I've already asked the PP if they could take notes (eventhought their last attempt was shoddy) and they've said they are unavailable. I could take the notes. But I can't do that and also listen to everyone and answer questions.

[WillR73]

Sally, once I was your son, and my mother was you. It all kinda worked out - we both stayed sane and didn't lose our hair

 

In Northern Ireland we have the NI Law Centre. It's a charity-linked group - you can only be referred by someone like NAS. Basically free lawyers who like to launch crusades - even to the point of suing councils and health boards. That exist in your area, or something like it?

 

You get my point. You already know your son's legal rights. All the little job-titles can argue importance, but nobody shouts at a Judge You don't have to spend money putting the school in court, just convince them you're ready to do it tomorrow. And remind them that Judicial Rulings often turn up in newspapers.

 

Then ask them if they'd like to compromise

[coolblue]

Hi Sally

 

We had problems over our daughter's attendance at school in Y7. She had been in poor health for some time and then got recurring viral tonsillitis and was clearly not well enough to attend school for several weeks. When she did go back to school she caught a virus and developed tonsillitis again. Apart from having a rather poorly child, the biggest difficulty we had was with the Education Welfare Service.

 

We were not given clear information about the legal position, or about the LA's obligations, either verbally or in writing, despite being in contact with the EWO on and off for a couple of years about the same issue and despite asking where the relevant information could be found on the LA website. I had to figure out what the situation was from other LAs' websites and information from other parents.

 

No clear strategy was put in place. The school said it would send work home each week but didn't; the EWO kept telling us to get a letter from the doctor, and then from a consultant, which we did, but it was never the sort of letter she wanted. There was a 15 week waiting list for ENT consultants at the time, so we ended up paying for a private appointment.

 

We kept getting phone calls from the school fretting about dd's attendance and telling us she was missing her education as if they thought we hadn't realised this, or thought we could magic her better, or something.

 

In the end we got so fed up with the whole thing, and felt so sure that the pressure to 'get better and return to school' was making her worse, that we de-registered her from school to educate her at home until she had completely recovered. It turns out she had glandular fever. Five years later she's still not fully well.

 

The whole business was characterised by lack of clarity and poor communication and the EWS appeared to be making its policy up as it went along. It was clearly driven by attendance targets, rather than concerns about health or education. Everyone was so focussed on her school attendance, little attention was being paid to her health, which, I suspect was why the glandular fever diagnosis took so long.

 

With hindsight, I would not take anything for granted, and would want specific information about policy, a clear written, agreed strategy and accurate minutes of meetings. In the past, in the absence of anyone to take notes for me, I have written up the meeting immediately afterwards and circulated them to attendees giving them the opportunity to correct them if they're wrong. If you've had inaccurate minutes in the past, I would insist on being able to make a recording.

 

Good luck.

 

cb

[Sally44]

We've got a team meeting on Thursday.

We've not been given any written invitation or Agenda. Just been told the 'aim' is for us all (whoever they maybe) to talk about how to get my son back in school.

But I really don't know what else I can say to them. Every professional already has all the information they need that I have been sending to them over the months/years. This isn't something new.

We had the original Statement that wasn't complied with and now a new statement that contains nothing. And a school that has put in writing how they have gradually removed every single support because they had no concerns - and this was at the same time I was saying he was anxious, and was vomitting in school.

 

So how do they provide what he needs under a Statement that contains nothing?

 

Every professional and school have turned a blind eye every time I said he was not coping. I am printing off all the correspondence over the years for the appeal and I am amazed at how much information they had. No-one every asked me about him refusing school, or hitting himself, or choking himself, or vomitting, or questioned all the things he was saying and I was telling them.

 

I have a letter to the SENCO dated a month before he refused school in which I said that the MEP targets should be changed to reflect his immediate severe difficulties to include targets about emotional literacy and functional use of language. That request was turned down "because they had no concerns". This was after the MEP meeting where we told everyone our son had been referred to CAHMS due to threats of self harm and suicide. And we had asked for notes to be taken and when they arrived there was nothing in it about what we had said. It was like we never attended at all. Everyone talking about how well everything was going.

 

I don't know how everyone will feel about it, but i've got a dictation machine I will set up in the middle of the table. Has anyone else used a recording device like this in a meeting before?

 

The other question I have is about the out of school education service. If my son is suffering with anxiety, how is he going to cope with someone coming into our house and turning it into a school, or him travelling to a different environment to learn. Do the teachers have any training in ASDs or SpLD? Will they be a help or will this just cause more distress?

[JsMum]

We've got a team meeting on Thursday.

We've not been given any written invitation or Agenda. Just been told the 'aim' is for us all (whoever they maybe) to talk about how to get my son back in school.

not if he is medically signed off due to anxiety.

 

But I really don't know what else I can say to them. Every professional already has all the information they need that I have been sending to them over the months/years. This isn't something new.

just keep collecting the evidence, the school, local authority may choose to ignore this, but if you end up at SEND they will not ignore it and you have documents where youve raised your concerns time and time again and it went ignored, that is not your fault, just the system resisting thier responsibilityx

 

We had the original Statement that wasn't complied with and now a new statement that contains nothing. And a school that has put in writing how they have gradually removed every single support because they had no concerns - and this was at the same time I was saying he was anxious, and was vomitting in school.

 

So how do they provide what he needs under a Statement that contains nothing?

 

Every professional and school have turned a blind eye every time I said he was not coping. I am printing off all the correspondence over the years for the appeal and I am amazed at how much information they had. No-one every asked me about him refusing school, or hitting himself, or choking himself, or vomitting, or questioned all the things he was saying and I was telling them.

it is very positive you have evidence, this will be good for SEND

 

I have a letter to the SENCO dated a month before he refused school in which I said that the MEP targets should be changed to reflect his immediate severe difficulties to include targets about emotional literacy and functional use of language. That request was turned down "because they had no concerns"

 

This was after the MEP meeting where we told everyone our son had been referred to CAHMS due to threats of self harm and suicide. And we had asked for notes to be taken and when they arrived there was nothing in it about what we had said. It was like we never attended at all. Everyone talking about how well everything was going.

I understand how frustrating this is, my sons is doing something similair even though there is evidence of his decline in his attainments, just keep going and collecting your evidence, maybe keep a few notes of your own for cituations where the school want to cover up the difficulties your son has.

 

I don't know how everyone will feel about it, but i've got a dictation machine I will set up in the middle of the table. Has anyone else used a recording device like this in a meeting before?

I would love to do this too, you could ask if anyone objects and then just place it on the table.

 

 

The other question I have is about the out of school education service. If my son is suffering with anxiety, how is he going to cope with someone coming into our house and turning it into a school, or him travelling to a different environment to learn. Do the teachers have any training in ASDs or SpLD? Will they be a help or will this just cause more distress?

We have set up a desk in Js games room so he has a set place for his Home tutor and him to work in, with access to LapTop as he is very talented on the PC.

 

J has coped well upto now, the process was slow and gradually built up, for example it was just a short visit to get to know one an other, then a short home tuition session, and it gradually builds up, Js worker is mostly experienced in college students and he has experience with special needs and I would say that it is going well, its still early days but today in his session though it was difficult to get J into learning mode, once he did he went over his time and we had to tell J that it was time to finish.

 

It is fitted around times that suit your child and they can do work that they want to do due to the one to one, I would say give it a go, your son has a medical certificate and he should be given home tutoring, J has just had his extended after the half term so we have his a bit longer, were hoping until we can get J into a new specialist 52wk provision.

 

Its defo not a long term provision as I wont be able to manage the 24-7 eliement of Js needs but for now at least it is something and J is enjoying the Home Tutoring servicex

 

JsMumx

Edited February 15, 2011 by JsMum

[coolblue]

 

The other question I have is about the out of school education service. If my son is suffering with anxiety, how is he going to cope with someone coming into our house and turning it into a school, or him travelling to a different environment to learn. Do the teachers have any training in ASDs or SpLD? Will they be a help or will this just cause more distress?

 

My son (12) has had home tuition for the past three months - one hour twice a week - as part of his transition back into school, and as part of his statutory assessment (the teacher assessment part). He's had two tutors, neither of whom has had ASD/SpLD training, but both of whom have been brilliant, even though totally different. (The first one asked to change because she has a hearing impairment and couldn't lipread my speech-impaired son!) The second tutor might not have had any specific training, but she's clearly very experienced and adaptable and unfazed by anything. It took ds a few weeks to get used to the idea, and he has gone back to frequent bed-wetting, so I think there's some underlying anxiety, but generally, he's not only been co-operative, but very engaged with the whole process.

 

Having said that, he had been home-educated for three years, which has given him time to recover his composure, re-evaluate what happened in school, discover his strengths and weaknesses for himself, and to question the approaches adopted by teachers, so he's not the same child that we took out of school. Also, our tuition service has won awards, and I'm not surprised. Using it has been like stepping into a different world. Shame schools don't adopt the learning models it uses.

 

The service also has tuition centres. The reason ds wasn't allocated a place at one of these is that he was significantly younger than most of the kids at the most appropriate one, and since he was home-educated anyway, a transition via a home tutor made more sense.

 

cb

[Sally44]

Okay, your posts are sounding more positive.

 

But who decides to provide the sick notes. This time I went to the GP. Who decides next? CP have said it is not them as they are not an accute service. And CAHMS seem very busy and I don't have a further appointment for them. Is this something I raise at the meeting tomorrow?

 

What I want to know is how is anyone going to gauge how much he can take before he needs a break? I can see that home tutoring is not alot of hours. But my son is not able to request breaks or even recognise what he feels from an emotional or sensory point of view. So whoever is in charge needs to automatically build in breaks and not expect him to request it.

 

I'll take the dictaphone and see what response I get.

 

Apparently they are also going to complete a CAF on that day.

[caci]

It sounds like you are on the same merry-go-round I was on a few months ago.

 

I was told by EWO that GP should sign our son off sick if she felt his anxiety was preventing him from being at school. The GP insisted she was not qualified to identify anxiety and could not complete a sick note for a child anyway. She did agree to write a letter (for which I was charged) but the EWO decided that was not enough proof.

 

The school referred us back to CAMHS, but they decided the problem was school based and therefore should be dealt with by the school.

 

I suspect you need someone to agree to home tuition, but I don't know who.

 

However,I assume if you are waiting for home tuition, the EWO should back off, and stop trying to prosecute you for your child's non attendance.

 

Catch 22

[bid]

We had letters from my son's GP, his Consultant Psychiatrist from CAMHs and his Consultant in Paediatric Disability from the specialist diagnostic centre. These were accepted by the school and LA.

 

Re: home tutition. The school has to refer the child to this service within the LA.

 

HTH

 

Bid

[coolblue]

Okay, your posts are sounding more positive.

 

But who decides to provide the sick notes. This time I went to the GP. Who decides next? CP have said it is not them as they are not an accute service. And CAHMS seem very busy and I don't have a further appointment for them. Is this something I raise at the meeting tomorrow?

 

There are two issues involved here. One is whether or not the child is being educated and the other is the child's school attendance. What our LA wanted to cover our dd's frequent absences (due to tonsillitis) was a letter from the GP saying that dd wasn't well enough to attend school until xxx date. We didn't realise this because all what we were told to do by the EWO was to 'get a medical certificate next time she's ill'. I had assumed there was a recognised protocol in place, like certification when you are off work. Not so. The GP we saw shouted at us when I asked him about this and said he didn't have time to issue medical certificates to school children. Another GP agreed to write a letter but didn't put dates on it because we hadn't asked him to because the EWO hadn't told us that was required.

 

The other issue is the child's education. The LA has a statutory responsibility to put educational provision in place if a child has been off school sick for more than 15 consecutive school days. How they do that is up to them. When dd had been off for more than 15 days,the LA were quite happy with her school sending work home once a week, except that it didn't happen. Clearly they don't want kids throwing a sickie to get out of going to school, so they have developed a policy to prioritise access to the tuition service. Theirs (in common with many other LAs) specifies that a child has to be referred to the tuition service by a practitioner at consultant level on the grounds that a medical condition makes it impossible for the child to attend school. They wanted the consultant we saw to specify how long dd was likely to be off school - which he couldn't do because he didn't know. By this time I felt as if I was banging my head off the proverbial brick wall. In the end the EWS drew up a form to give to the GP to sign to cover dd's absence but since I had been teaching her myself for months, we decided to take her out of school completely until she was better. If it hadn't been so worrying it would have been farcical. If I'd known it was going to be such a muddle, I would have told the EWO to tell the health service what they needed and let us know when they'd sorted it out. As it was, I spent months being a very confused piggy-in-the-middle.

 

In ds's case, his paediatrician was more than happy to write a letter saying he wasn't medically fit to attend school (because of ASD/anxiety) and recommended that he be referred to the tuition service. This ticked the LA's boxes and the tuition service just leapt into action. Mind you, his paediatrician was keen for him to go back to school. How she would have responded if he was still in school, I don't know.

 

 

What I want to know is how is anyone going to gauge how much he can take before he needs a break? I can see that home tutoring is not alot of hours. But my son is not able to request breaks or even recognise what he feels from an emotional or sensory point of view. So whoever is in charge needs to automatically build in breaks and not expect him to request it.

 

This is an issue about who is taking responsibility for your son's education and there's a big loophole in the legislation allowing everyone to blame everybody else. Legally, you have responsibility as parent, but the LA have a responsibility to provide the education if you ask them too. But the education is delivered by schools, who are perfectly capable of constructively excluding a child deliberately or unintentionally. The LA cannot compel the school to provide a suitable education even though that's what the school is supposed to be doing. And then everyone can turn round and blame you because you haven't managed to magic your son better.

 

You could try asking them what they would do if it was their child. But do get them to give you explicit instructions about the doctor certificate thing - and copy the instructions down and then show them what you have written and ask if that is what you should do.

 

I'll take the dictaphone and see what response I get.

 

Apparently they are also going to complete a CAF on that day.

 

Good luck.

 

cb

 

 

Good

[JsMum]

I have some interesting news, Ive just found out today that I didnt actually need a medical certificate for J to recieve Home Tutoring service, the main reason J has his Home Tutoring is because of Js Statement, and as it is been reassessed, Js refual to go to schoo, my concerns that the presant school doesnt meet his needs he has been given home tutoring for the last four weeks and it has been extended for the next four weeks, I wouldnt of upset the GP if I had of known this as J recieved another medical certificate stating he is not able to attend his present school for a set period.

 

So the reason J is recieving Home tutoring is due to his Statememt and been in secondary education which is felt more important! shouldnt all the schools years be considered important?

 

Anyway Ive fought for a medical certificate and didnt really need it for home tutoring.

 

J has his home tutoring increased this week too.

 

So good news but also have some bad news today in that Social services have written to me with a legal letter stating they are going to court to obtain a interum care order so not sure how that is going interfere with his home tutoring.

 

 

Anyway Sally I would check with SEN to see if there is anything they could due to your son having a statement and having special needs.

 

JsMumx

[Sally44]

I have had an email from the school this morning. They have spoken with the LEA who say that it has to be a letter from a consultant before he can access any home tuition.

 

I have to email the LEA to ensure that they are happy with the GPs letter until I get a consultants letter! If they are not, then I have to ask them what they will accept. I'm not sure what else the GP can do other than send in a letter, which they have already done.

[Mandapanda]

I have had an email from the school this morning. They have spoken with the LEA who say that it has to be a letter from a consultant before he can access any home tuition.

 

I have to email the LEA to ensure that they are happy with the GPs letter until I get a consultants letter! If they are not, then I have to ask them what they will accept. I'm not sure what else the GP can do other than send in a letter, which they have already done.

 

Hi Sally

 

Sorry to hear your troubles.

 

I know different LEAs work differently, but it was the EWO that referred my son for Home Tutoring due solely to his non attendance at school. We have never had a 'sick note' as my GP just said 'he needs to be at school'. We did have a report from a Paediatrician and a letter from CAMHS which both stated he would find it difficult to cope at school due to depression, anxiety and traits on the autistic spectrum. We were threatened with prosecution by the school and CAMHS (!), but Education Welfare were actually really supportive and understanding.

 

The Home Ed service initially tried online learning which I thought would be great for him, but when logging on he could see names of other kids logged on (and presumably realised they would see his name), and he became so anxious he really could not do it. He then had a tutor come to the house to do Maths. He had 2 really good sessions with the teacher, who was patient and explained things very nicely, then unfortunately my mother-in-law passed away and he was not able to face any more sessions.

 

I ended up contacting my MP, explaining the situation and the reasons for it, and we ended up getting a letter from the head of the Education Authority stating that of course they wouldn't prosecute as he was off for known medical reasons (we still had no sick note). Eventually we deregistered him and he is happily home educated now. He learns on his own, talks about going to college and university, and what sort of jobs he might be able to do.

 

Best wishes to you all x

[coolblue]

Did you have the meeting, Sally?

 

cb

[Sally44]

Yes we did and I was allowed to tape it.

The CP said that it was her common experience to come across children like my child, who were mainstream and were not coping.

She said he has no emotional literacy skills, and cannot talk about past events. She said we needed to "start from the beginning like a new born child".

She said they were not going to offer him any cognitive therapy because they felt he would not generalise skills, as he was not generalising skills presently.

They said they were very concerned at his behaviour and that was why they referred him for a psychiatrict assessment.

I told them the psychiatrist had ruled out depression because she felt it was entirely due to educational and sensory issues.

CP said they are seeing me again. But I have the feeling they are going to sign us off.

 

OT admitted that OT provision in schools will end in March and that she will no longer exist.

 

SALT confirmed that although he could demonstrate understanding concepts/skills in 1:1 discreet sessions when calm, that she knew he could not generalise them and was unable to label his own emotions and found it very difficult to formulate a sentence.

 

School said they thought everything was fine, eventhough they admitted that he said the same things in school as he did at home, they didn't think he was serious. The SALT pointed out that that was probably because of his accent, inappropriate tone of voice that does not fit the emotion, lack of eye contact and poor body gestures as well as being floppy and always looking relaxed when he wasn't.

 

School said they did not know what else they could do. But that they could not make a decision about which school he should go to.

 

We've got another meeting in a few weeks. No plan was put together at all.

 

I have said (and decided) that I am not returning him to his former school until they have put in writing a programme of support that includes his daily timetable because everyone at that meeting was admitting that he could not cope and did not have the skill set to return to the same level of demands and environment. But they have not prepared any kind of plan on how they are going to address this.

 

I am waiting for a further appointment with CAHMS. But it maybe that they also say they cannot do anything further for us because it is not a mental health issue.

 

That leaves us hung out to dry.

 

The independent school we visited have said they would accept him. But they said they had grave concerns about his anxiety, and emotional state. They said he had a complete inability to make decisions. His initial response to demands was NO, but when asked "why" he would panic and quickly adapt his answer and comply with the demand. I know my son does that alot. From what he has told me himself, he gets totally overwhelmed by emotions when he feels in conflict with himself or others and so he tries to avoid that at any cost. But the only way to avoid that internal conflict is to quickly comply to do things that he really cannot cope with or tolerate or understand.

 

So I felt the meeting was useful from the point of view that I got it all on tape.

 

The chairperson (SS), kept asking "how do you know that the behaviours you are describing are due to autism and not just any child who is trying to get out of school". But the explanations of the other professionals were very clear that it was due to his difficultues under Autism.

[dm2010]

A thought - if you haven't already done it. Ask your son the question :

 

"what you you like to do over the next 3 years school wise ? "

 

No preconditions - just let his imagination do the legwork. And if you gave him 24 hours to come up with a reasoned answer rather than reply straight away, what would he come up with ?

 

The answer might well be wildly impractical but elements may have merit which can be built on.

[caci]

I think asking your son is an excellent idea.

 

Our 12yr old really was struggling every day to go to school, but was even more horrified at the thought of a tutor coming into our house. To him, the idea of someone come into our home (even for just a hour) to do school work was unbearable (although he was OK about doing school work at home with me)

[Sally44]

A thought - if you haven't already done it. Ask your son the question :

 

"what you you like to do over the next 3 years school wise ? "

 

No preconditions - just let his imagination do the legwork. And if you gave him 24 hours to come up with a reasoned answer rather than reply straight away, what would he come up with ?

 

The answer might well be wildly impractical but elements may have merit which can be built on.

 

 

I understand what you are saying, but my son has a moderate/severe speech disorder and he just would not be able to answer that type of question. Which is all part of my reasoning that being mainstream is not appropriate.

[Sally44]

I will try it and see what he says.

I'll try to ask him some very simple questions.

[dm2010]

Better still - get him to write it down, on a computer if he doesn't want to do handwriting.

[coolblue]

I understand what you are saying, but my son has a moderate/severe speech disorder and he just would not be able to answer that type of question. Which is all part of my reasoning that being mainstream is not appropriate.

 

 

Snap!

 

Asked question: "I don't know!" (writhing)

 

"I can't decide!" (flaps hands)

 

"Aaagh!" (hands over ears)

 

It's possible that a *very* gradual introduction to home tuition might work. For the first four of my son's tutor's visits, he said "Hello" and then went back to his bedroom. We had a cup of tea and a chat and left him to it. On visit five, we'd just been making words on a calculator display when she arrived, and he showed her these - and then went up to his bedroom. Now, four months on, he does 40 mins of maths and english with her each time and comes downstairs as soon as he hears her car arrive. She's been great, let him take it at his own pace and has let him do a lot of talking about what he's interested in.

Edited February 19, 2011 by coolblue

[coolblue]

It sounds like what the CP had to say made a lot of sense. But if CAMHS can only deal with 'mental health' issues, that means that *no one* is dealing with developmental issues. That's extraordinary. Surely developmental behavioural issues fall slap-bang within their remit? I think I'd start asking some hard questions from someone a bit higher up. This sounds like another case of a child falling between services. This is shocking.

 

cb

[dm2010]

Snap!

 

Asks question: "I don't know!" (writhing)

 

"I can't decide!" (flaps hands)

 

"Aaagh!" (hands over ears)

 

It's possible that a *very* gradual introduction to home tuition might work. For the first four of my son's tutor's visits, he said "Hello" and then went back to his bedroom. We had a cup of tea and a chat and left him to it. On visit five, we'd just been making words on a calculator display when she arrived, and he showed her these - and then went up to his bedroom. Now, four months on, he does 40 mins of maths and english with her each time and comes downstairs as soon as he hears her car arrive. She's been great, let him take it at his own pace and has let him do a lot of talking about what he's interested in.

 

 

Now that is impressive.

 

It all sounds very similar to my diplomat grandfather's experience of conducting negotiations between 2 parties. The first thing to do was to get a dialogue going by using as the jargon goes 'confidence building measures'. Environment, personnel, even the colour of the tablecloth were all important. Once everyone was comfortable, then things really started to move. Should stress though that for anything like this to work, both parties have got to WANT deep down to engage with each other.

 

Aspies pay attention to details. And if they see that careful preparations have been made to welcome and accommodate them, they are likely to respond with enthusiasm.

Edited February 19, 2011 by dm2010

[Sally44]

Better still - get him to write it down, on a computer if he doesn't want to do handwriting.

 

I could try that. But all forms of communication are difficult. He can't really read or write. But I can try both and see what, if anything, he says.

 

He does say things to me about how he feels. And there are a number of difficulties on different levels all impacting on eachother.

 

He has very poor speech and communication.

He is unable to make choices because he cannot predict outcomes and how they might make HIM feel.

He is unable to label his emotions.

He often feels totally overwhelmed and overloaded and at those times he feels out of control. He says like his brain is on fire, or he's been electrocuted. He says he cannot stop it and he can't control it. And when he feels that bad, that is when he might also say or do things he is ashamed of.

So for him, the only way to avoid that 'feeling' and that 'outcome' that makes him feel so bad, is to try to contain it and comply.

But that means he is putting himself into situations he cannot cope with and under extreme stress and anxiety that is making it even harder to comply to simple everyday demands.

 

And if he does say "NO" he will then be asked "Why" he can't/doesn't want to do it. And he can't explain it. He can't put a name onto how he feels, or explain in words, so rather than getting upset trying to communicate this to another person, he thinks it is easier to just capitulate and do what is being asked of him.

 

But his body then starts to show the physical symptoms of the inner anxiety/stress with headaches, vomitting, unable to sleep, general fear about anything and everything.

He wants to be good and he is afraid of being punished or told off, especially in school. And he has no understanding of how to resolve these things. He thinks he has to leave the house and has tried several times to do that. He thinks we hate him and he says he hates himself and so he must leave. He may well have seen something like that on TV, so that is the answer because he cannot work it out for himself.

He knows he is not very good at most things. So he tries to avoid them, but can't because school is made up of all the things (including sport) that he cannot do well.

So every day he is constantly trying to do things he cannot do, which make him feel overwhelmed and overloaded, which cause him to realise again and again that he isn't very good compared with his peers. So his self esteem lessens. And when he can't contain it anymore and has an outburst, he judges himself harder than anyone else and again that proves to him how useless and rubbish he is.

 

That is what he has been saying to me for years. But at school he keeps saying he is happy and okay etc. Right up until about 9-12 months ago. But things happen so slowly (referals etc) with all those involved. That we reached crisis way before anyone had done anything. And TBH, they don't seem able to do much anyway.

Edited February 19, 2011 by Sally44

[dm2010]

Ouch - this does sound like a difficult one.

 

So to use my grandfather's method, there will be something that he has an interest in that he does quite well, perhaps without anyone including himself realising it. That's worth a trawl through the memory banks because it could well be something obscure that you've never really noticed before. At his least stressed point, what's he up to ? Might give a clue as to what activity to pursue.

 

Something else to try is sound relaxation techniques. Tell him you want him to help you test out a new set of earphones you've just bought, preferably when he's feeling least stressed.

Play some offbeat music - tubular bells is quite a good one, also Gymnopedie no.1 and Au Clair de Lune by Eric Satie

Can also use pure sinewave tones, or even plain white noise. Something will work and he will tell you when it does.

 

Other possible avenues to explore are lighting tones and glasses with colour filters. This helps to reduce sensory overload. I prefer for example to work in much lower light conditions than my colleagues.

 

The key here is to reduce the stress level. At which point logical thought will start and self esteem will go up on its own.

[Sally44]

It sounds like what the CP had to say made a lot of sense. But if CAMHS can only deal with 'mental health' issues, that means that *no one* is dealing with developmental issues. That's extraordinary. Surely developmental behavioural issues fall slap-bang within their remit? I think I'd start asking some hard questions from someone a bit higher up. This sounds like another case of a child falling between services. This is shocking.

 

cb

 

I'm not quite sure who to go to.

I could go back to the Developmental Paeditrician??

 

 

It seems bizarre to me. Anxiety and stress and emotional issues and overload etc due to Autism are health and educational issues. But when it is making you ill, surely it is HEALTH that have to say if (a) he is fit and ( when he should return to school.

 

If the status quo has actually caused the illness, then surely EDUCATION need to ensure that things are different and that he is supported when he returns - otherwise you are setting him up to fail again.

 

CAHMS have clearly said that he needs an OT programme. OT have admitted that they are folding up their education service, which finishes end March. At the Team meeting OT said she may not be able to attend any further meetings as she is unable to provide anything!

 

In the letter from CAHMS their Plan was asking school to send them all developmental reports. But CAHMS did not copy that letter to school. And this time I'm not telling anyone that they are xxxxing up big time. Let it all come out at tribunal. So CAHMS will not receive anything from school until someone notices this error.

 

And I don't think there are any "developmental reports" on my son.

Edited February 20, 2011 by Sally44

[bid]

Sorry Sally if I have missed that you have already written about this, but does your LA have a special school for complex learning difficulties?

 

My DH is a senior teacher at a LA secondary school for CLD, and they have children coming to them from mainstream who are in a dreadful state, but they have some fantastic success stories.

 

If you haven't already visited your LA special school it might be worth a look...don't be put off by the old idea of MLD, as this is being re-designated now as Complex Learning Difficulties.

 

Bid <'>

Edited February 20, 2011 by bid

[coolblue]

I'm not quite sure who to go to.

I could go back to the Developmental Paeditrician??

 

Try the paediatrician and then work your way up the hierarchy. Someone in the system should be responsible for ensuring that your son gets the support he needs; it's simply irresponsible to refer him to a service that's being withdrawn. That someone, I suspect should be working in the health service, because regardless of what developmental condition he has, or whether his 'mental' health is affected or not, it's clear that school is affecting his physical well-being.

 

cb

[Sally44]

Sorry Sally if I have missed that you have already written about this, but does your LA have a special school for complex learning difficulties?

 

My DH is a senior teacher at a LA secondary school for CLD, and they have children coming to them from mainstream who are in a dreadful state, but they have some fantastic success stories.

 

If you haven't already visited your LA special school it might be worth a look...don't be put off by the old idea of MLD, as this is being re-designated now as Complex Learning Difficulties.

 

Bid <'>

 

 

I have looked around most primary and secondary options.

In primary there is only moderate and profound learning disabilities. That is a general low cognitive ability and they also have some non-verbal autistic children there too.

 

At secondary they have only mainstream, or the secondary equivalent of "Enhanced Resource", which basically seems to mean an extra TA in a mainstream class.

 

Then there is the behavioural and complex needs school. I did visit that and was quietly thinking about it. But it is a school that is again trying to cater to such a wide range of needs. There are serious behavioural issues children there. The class ability ranges from P scales to typical secondary school level. They do not use ASD approaches and do not have any extra or specific training in SpLD.

 

I have no confidence that any of the schools have enough ASD experience to even pick up on his difficulties. I've made up my mind on the only school that I think can meet his needs.