Hello, My name is Amanda, I have a fourteen year old son, and I'm now totally at a loss as to where to get help or even what to do? I feel I have battled for so long, I am physically and mentally drained from it all. I hope this is okay but the only way I can think to explain it is to copy and paste my recent letter to school. I would very much appreciate any advice please.

Dear Mr Davies,

I don't know if you are aware of my son's situation at your school or not, but I thought I would write to you detailing it and would appreciate your views on the matter. Below is a copy of a letter that I have sent to Mr Fleming, who I would like to say a very big thank you to, for all the help he has given me regarding Ryan's English work. I apologise if this letter is long, as It covers quite a few years and I feel I have to explain this to you to enable you to understand what's going on here.

Ryan had problems from birth, he went to a special needs nursery, he had a statement of special needs all the way through Primary which was ceased before Secondary, he was always thought to be on the Autistic Spectrum.

During Ryan's transition week to*********, he was bullied terribly, I complained to the school, the then SEN teacher said he would be fine and no problem was reported, effectively dismissing it. I explained about his special needs, I was told they had no folder from Primary to confirm this, It was dismissed again. Ryan wasn't coping well at all, he frequently wouldn't go to school, his anxiety become increased, it affected his stomach and his nerves very badly. I got in touch with the school again, I tried to explain Ryan's difficulties, I asked for help. I was offered a meeting with the then SEN teacher again, she listened to what I had to say, she comforted me with the offer of support for Ryan and a greater understanding from his teachers, she said that she would ring me back in a weeks time to give me a follow up, but never rang back. I rang the school, she was always busy. I tried his head of year, I never had any communication back.

Almost a year into the school now and I received a phone call to say that a folder had just "turned up" from the Primary school, and that she could see that he had indeed had a statement of special needs and would I like to come down for a meeting, by this time Ryan wasn't sleeping, was constantly worrying about things, was telling me he didn't understand his teachers. Once again I explained the same things in the meeting, she attended with Mr ******, I was reassured once again that things would improve for Ryan, nothing happened, I received no communication.

When Ryan hit puberty he spiralled out of control at home, he came to me and asked for help, he told me that he was wandering around school and didn't know how he got there, or what he was supposed to do, that he went blank, if he was speaking to someone he couldn't remember what he was saying or talking about and it made him panic, he self harmed at home, he became suicidal, his autistic tendencies became more apparent.

I rang the school again to ask for help. Another meeting was set up with the new SEN teacher, Mrs Mills and his head of year then, Mrs Lee. I won't go into details but I explained everything and was advised to take him to my G.P's and ask for him to be referred to CAMHS. I was also made to feel like this was all in my head! I was told that nothing could be done to help Ryan unless he had a diagnosis.

Quite a few meetings later, all consisting of me asking for help for Ryan with Mrs Mills and Mrs Lee, continued to have the same frustrating outcome, no help and he was doing fine. Ryan's own words....he couldn't understand his teachers, he hated break times and lunch times, he can't cope with the noise, the lights, all the people everywhere, he can't understand his lessons, it just fell on deaf ears time and time again. I feel we weren't taken seriously at all.

Ryan went for nearly two years of assessments and meetings at CAMHS. Dr ******* offered to come out to the school to attend another meeting with Mrs Mills and Mrs Lee to see if they would take notice of him, unfortunately they weren't any more forthcoming and Dr ******* at the end of the interview put it to them that Ryan should be assessed by an Educational Physcologist and if they got the ball rolling then Ryan might be able to get help in the future and his schooling not be affected. Mrs Mills agreed to this. It never happened, this was last year.

I constantly got the same answer from her when enquiring about it...there's not much point unless we have that rubber stamp of a diagnosis. Can you imagine how I am feeling?

Ryan went into crisis, he could not attend school, his anxiety levels were at such a high that he was hearing voices, not sleeping, he refused to attend. Another meeting, this time to try Ryan on half days, mornings only, with assurance that Ryan would be talked to, monitored. No one spoke to Ryan. He just coped with this especially as it didn't involve breaks where he had to socialise, his words.

Then Mrs Mills sent me out a renewed Timetable, everyday was different, sometime two hours, some three or four, mornings and afternoons, this involved breaks and lunchtimes also, Ryan couldn't cope at all, no structure, no help, no one to talk to, nowhere for him to go at recreation times, following friends he USED to have something in common with but now tagged along and not understanding them or walking around on his own. He went into another crisis. He hasn't attended school since, now five moths.

Since then I have found out that the children in one of his classes thought it was amusing to get Ryan to hit his head off the table, Ryan did this feeling afraid not to. I rang Mrs Lee with this information and her response was..I can't see that happening in this school.

The last part of Ryan's assessment for his diagnosis was supposed to be in school being observed without him knowing, this could not happen, so a support worker came out to the house and took him out to observe his behaviour, during this time he was so anxious at being close to another person that he stepped out into the road without thought for his safety. A few visits later and then a phone call by Mr ********* to tell me that his diagnosis was complete and he has been diagnosed with Autism.

Questions need to be answered because now in Ryan's crucial last years of Secondary school, he has nowhere to go, if Mrs Mills had done what Dr ****** had requested Ryan would now have a statement of Special needs enabling him to access education to help him, instead he now has to go through what I'm being told is a twenty seven week assessment to regain it... Mrs Mills attitude of "It's all very well Dr ******** saying he is Autistic but he hasn't been diagnosed" attitude is disgraceful and has failed Ryan completely in mine and his family's opinion.

Where do we go from here? How can Ryan be helped? Who has accountability for the catalogue of mistakes made with Ryan's years at the school? I look forward to hearing from you and hope you can help in any way.

Kind regards,


Amanda




From:
To:
Subject: RE: d - Home and Hospital Tuition
Date: Thu, 28 Mar 2013 13:26:42 +0000

Hello Mr Fleming,

I spent most of yesterday looking at this and trying to come up with an answer. It's incredibly frustrating for me at the moment as Ryan has no education?? The school hasn't bothered to keep in touch or help me in any way with keeping him up to date with any subjects, I can honestly say you are the only teacher that has in the five months he has been absent from school.

A meeting is being organised here at my home with Home and Hospital, Welfare Officer, and whoever they can get from the school to try and thrash out a solution for this situation, unfortunately my problem with Ryan's English doesn't stem from lack of effort but total lack of understanding of the tasks, it's quite difficult for me too, as I cannot think of a way to teach him any of it without the use of emotions, feelings, and all the things Ryan has difficulty's with understanding...as you may or may not be aware Ryan's diagnosis came through three weeks ago, and confirmed what we as a family have always known, that he is indeed Autistic.

I am trying to persuade him to go back into the school for half a day once a week, but even this small amount of time makes him extremely anxious and he expresses a deep fear of being there, regarding the people, lighting, noise, he especially doesn't like the recreation times of breaks and lunch. He is an intelligent boy but is kind of stuck in "no man's land", and there is no middle ground for him, it's either Mainstream school which he just can't cope with, to the point that he became suicidal, or Special needs school, which I have been told he is too "bright" for.....Insane to think there is nowhere else for children such as Ryan to help them get an education??

I have asked Ryan how he feels about not doing his exam this year and his response was...

"I don't know"

You mentioned "Speaking and Listening Assessments" Is this in front of the class, what is involved? This task could be impossible for him. I'm at a loss. Are there any after school extra classes in subjects, where he might cope better with less people? any help and advice would be welcome.

Kind regards,

Amanda.

Dear Amanda,

I feel totally overwhelmed by your situation. You have coped amazingly with a very difficult situation and I am full of admiration at how you have managed the situation until now.

As parents of school refusers - and I am not sure that your son is a 'refuser' - it seems out greatest hurdle is to get someone to accept responsibility for finding a way through the maze. We need a 'champion' who can bring together all the relevant council/school/NHS departments.

If your son had had a serious injury, then there is a 'system' to do that. But when it is a situation like ours, this seems difficult to achieve. Maybe time to talk to your MP?

The Easter break will, I hope, relieve the pressure on your family. Enjoy it!

Yours aye,

Simon

Dear Amanda

My heart goes out to you. I can hear your incredible frustration through your letters and you have certainly not had the support your son needs and is entitled to. It must have been incredibly draining, as you say - and not only having to deal with your son but the lack of response from the school is incredible. As Simon says - you have done well though - you are still hanging in there - even though it might not feel like it.

The school has an awful lot to answer to and I think at this stage (and these are only suggestions only) i would also be sending copies of your letters to the actual education authorities. It has gone on for far too long and the education department/authorities should know about this. And yes - as Simon mentions - think of your local MP. They can make contacts quickly whereas we as parents might take weeks and months. Send the letters to them too.
I know it takes an awful lot of energy to do this - but you have got the letters there- so just sending the same thing off to other potential players in this might just get the ball rolling a little quicker. Another parent on this forum found their local MP very good in this respect.

Children on the autistic spectrum and school refusers (or anxiety disorders) do overlap in some symptoms - often finding change difficult, bright lights and noise and if they have social anxiety - social situations (and lunch times) become a challenge. My son is 13 and has social anxiety as well as the school refusal and he also, like your son, finds recess and lunch the worst. He also had friends, but now struggles to maintain friendships and prefers to spend the time alone in the library with his iPad where he doesn't feel threatened and the environment is quiet and predictable.

I am not expert on psychological or autistic disorders - so my advice just comes from 8 years of dealing with my own son and trying to get help and support from the school. My son was diagnosed with generalised anxiety disorder at age 6 but the school has side stepped the support until very recently. Because our children physically look 'normal' then they are just left to their own devices.

Does the school have a welfare support team of any sort?
I have finally got the support that my son needs. I have had to rise above 'the blame game' and write down and present in person to the school 'what I want you to do' and 'what I will do'. At my most recent meeting I turned up with a big folder - it did contain print outs of all emails and paperwork ever made in the past year - but I didn't need to open it. I also dress up - (makes a difference) and they seemed to sit up and listen this time.

They wanted to tell me how busy they are and how I should be getting my son to school etc but I no longer listened (heard if all before) I just stated what I wanted. I requested that the school chaplain meet with my son. I was always in two minds about their role in schools - but this young guy has proved to be saviour. Which has made me think - if there is just one teacher in your son's school who might learn about your situation - perhaps they could become like a mentor? The Chaplain meets with my son once a week to help build his self esteem (they hang out on the computer, ride bikes, chat, play chess). He is also working on helping my son re-engage with others and break down some of his social anxiety. My son now feels there is one person at the school he can connect to (just the thought of it seems to help). It doesn't involve endless talk about 'why are your anxious' type stuff which drives my son crazy - it just involved 'connecting'. It sounds like your son needs something like this. Perhaps you can ask if there is someone who can make the link for your son when he is at school.

The other things is - there must be other autism spectrum disorder children or asperger childen at the school? Can they put your son in touch with them - is there are group support for them? I know that some catholic schools near me even have separate locker areas for these type of children so that they can avoid the shoving and pushing at lockers.

I wish I could reach out and help you more - but just can share some of what has helped me and hope that you can find something in that to follow through with. Because my son has an anxiety disorder - we have also sought help with private psychologists and psychiatrists and my son is now on medication which has really lifted his mood. The anxiety is not gone - he has to work on that - but the mood is so much better.
Are you able to get private help for your son in this respect? Do you think medication might help him take some steps forward? Sounds like he needs lots of reassurance that he will be ok - lots of building of self esteem before he can tackle school again. My son found doing half days was easier but then of course he was not developing the needed skills to cope with recess and lunch. Its tough - what do you do? As parents we cry out for our children in these situations but like in your case - you have to yell and scream to be heard.
Like Simon says - your son doesn't sound like he has a diagnosis of 'school refuser' but in fact some school refusers are on the high achieving end of autism so some of the same things do help.

Now that your son has a diagnosis- is the education authorities required to offer more support?
Let us know how you go - there are lots of lovely people on here who offer support as they know how you feel.
You are not alone - . Take some time out for yourself over easter and re-charge your batteries. You are a good mum and doing all you can. I am sure things will improve - sometimes it just takes a very long time to get others to listen. Hear from you again soon
Take care
Linda xx

Thank you, I have taken your advice on board. Yesterday I spent most of the morning e-mailing the message to all in authority I could think of, and surprisingly I got an e-mail from the Headmaster of the school, telling me that he was unaware of my son's situation and would like a meeting with me the two ladies in question and the deputy head...I feel slightly apprehensive about this as I feel as if I am going to be backed into a corner and they are going to close ranks.

I have decided to ask for him to come out to the house and try to get everyone together here, as I have no transport and cannot leave Ryan alone.

I did not sleep last night very well at all, trying to stop the replaying of it all in my head is hard, I guess the stress is really getting to me. I do not wish to meet with the SEN and his head of year as I have no confidence in them and there lack of understanding and compassion over the years has astounded me.

I have been bullied by these two ladies with a constant underlying threat of fines or court action over his absences, which has been another huge added stress.

In all honestly I feel sick to the stomach at having to go through yet another meeting, mainly down to the fact that I have been made to feel like I'm worthless of any opinion that matters, and I have gone from a confidant person into someone that just wants it all to go away and hide. This is a terrible thing for me to say, so I apologise. I know I have to keep carrying on for my son, I will do it, just it's not easy is it.

Thank you for your words of encouragement, they gave me that much needed boost to carry on.

Amanda x

hi Amanda,

Well done for sending off all those emails! Try not to let them play the blame game - its too easy for them to go down that road so see if you can interrupt them if they do and steer the conversation back to your son's needs. They don't have a child like you do. I know how hard it is to be confident and assertive when we feel so overwhelmed ourselves. So don't worry if you still feel very small in front of them (I have felt that way many times until just recently) - but if you can - push past what should have happened and get to the what 'must' happen in order to get them to play their role (which they seem to have sadly neglected). Make sure they understand that your son now needs more time to build up his confidence and self esteem before trying to go back to school (because they might push the going back to school angle without thinking through the current needs of your son) and that you need either tutors or work sent home or someone to liaise with both yourself and your son on a regular basis.

Have you got some support for yourself - are you able to have any counselling or do you have a supportive doctor? I take a low dose of anti depressants myself these days. When I wasn't taking them, I found that I was just too emotional about the whole thing as it was all so incredibly stressful and like you -I just wished it would all go away. So it might be worth asking your doctor what he thinks might be best for you at the moment.
Stay in touch - there will always be someone here to listen when things feel bad and I pop in as often as I can.
Take care -
Linda xx

Thank you Linda,

I really appreciate your time and advice, it's like a warm blanket for me. I do think I need to visit my GP as I am becoming very emotional over silly things and I want to be able to meet with them without breaking down into tears, which I'm ashamed to say I have done in the past, when I have gotten to the point where I realise I was sitting there again repeating everything all in vain once more.

I don't want to be that person again and I will dig out my suit as well.

It will be after the holidays that the meeting will take place, so I will keep you all informed, in the meantime, I will be making little notes of points I wish to make and go from there.

What I don't want to do is like you say, sit there and go round in circles about what hasn't happened and what should have happened, even though in my heart I feel like these two ladies should be held accountable and face some admonishment....but my head is telling me to move on and not involve them anymore in any of it, I don't know if this is the correct thing to do?

What I don't know is where I stand on my rights? if they can't give me any solid help or guarantee for his safety and welfare, do I have the right to say my son will not be returning until these terms are fullfilled?
Do I have the right to outline the reintegration of my son back into the school? all these things I don't know, as I like you am expecting them to basically say that Ryan can come back to school straight away and everything will be fine and dandy, this just won't be acceptable for me. So hopefully I can put on an act that day and become a very assertive and confident person, just for the few hours it will take.

Kind regards,

Amanda x

I think Linda has (as always!) covered most of the points, but I think that you need to let them do some blaming - it makes it easier for them. Don't challenge them, and there is no need to agree - just say something like 'Lets assume that is right, but what is the plan now?'
Maybe ask to see the Council/school school refuser guidelines; maybe ask how many are on the register (there probably won't be one, but it makes a point.); maybe ask what they think is the most successful strategy.

Linda writes about dressing for the occasion, and being prepared with copies of emails, reports, minutes of meetings, etc. They all help you be on top. They will not have had a lot of time to prepare, so the more time you take the more confident you will feel and the better your will perform.

This is your son we are talking about - so of course your emotions are going to show. Quite right too!

I am not sure that i make a very good blanket, but we are with you.

Yours aye,

Simon

Hi again Amanda,

You sound a little more positive about the way forward which is good. It does do your head in, doesn't it. Hope you are having lots of cups of tea and just sitting and doing your own thing at the moment : )

I think Simon is right in allowing them to go ahead with some of their blame but turn the conversation then around to what they plan to do now.

As for crying at these interviews.....I have done that and had them hand me the box of tissues (you feel so silly and low afterwards, don't you....but don't worry about it - you are not alone- and that really helped me when I found this forum and realised others were crying too. If you do cry....it's ok.....it means you are human and there will be other interviews. The anti depressants have helped me not to cry in interviews or about my son generally - but knowing I have become the expert on my son has also helped me (not just by reading as much as I could but by coming to the realisation that I knew exactly what my son was like - they didn't). Remember- you know what your son is like - and I am sure you have read up as much as you can - so you know his condition - why he might be behaving as he is - how he might be feeling inside. You are the expert - and you are at the interview to seek support and fill them in on the details. They are not the experts.

I also found to stay in control in the interview...you can also throw a question out to them to show them you are guiding them. You could throw in 'Are there any questions you would like to ask me?' Or "is there anything you would like to better understand about my son's behavior/condition/disorder?" If taking notes makes you feel more official and focused - do that. But otherwise - just go in there with the aim to come out with some support from them.

And if they try to trip you up about whether or not your son spends too much time using technology....a lie or two is ok ..we have enough to deal with without them wagging their finger at us telling us we should be taking technology away or enforcing a 9pm bedtime (at my last interview the vice principal told me her kids were in bed at 8.30. Well good for her....she hasn't got my son and she has a husband to enforce it - so I said that my son was going to bed much better ....he is.....but not till 10.30 and a huge fight every night - I didn't tell them that I just didn't quite specify what 'much better' was.). We can tell the truths to psychologists and counsellors and ask for help. My son struggles to go to bed as he does not want mornings and school to come around.

As for your rights. You might like to get in touch with Parent Partnership. There should be a local group in your area. They have been very helpful to some on here in the past - especially Sarah - who found their support invaluable. They should also know your rights. Just the right of every child to an education stands as a pretty strong incentive for them to do something in the long run as educationalists. Check out the parent partnership website and see how you go. Meanwhile...take some time out to do something for yourself.....treat yourself.....you deserve it.
http://www.parentpartnership.org.uk/
Take care
Linda xx

Hi Amanda

My heart goes out to you. Such a difficult situation, but you have done so well to get through this far and do everything you can to help our son. That was a really good letter to the headmaster, and hopefully things can be moved on by the school now. Getting your son back into school after 5 months is going to be difficult ... And maybe that school is not even the right school for him.

Linda and Simon have already said lots of useful things and are giving you great support. So I won't repeat what they've said and will see if I have any additional bits of advice.

As you said, you probably need to move on now even though you and your son have been treated badly over the the last few years but it is probably best to put that to one side for now. It is probably most important for now that you focus on what needs to be done for your son now in order for him to receive an education, and move things forward.

Why did your son lose his Statement of SEN at the end of primary? I think you need to progress getting the statement back in place. I don't know if it is quicker to do if you have had a previous statement or whether you have to start all over again (which can take 26 weeks from start to finish) And I don't know how you go about requesting a new statement if you have had one previously. If you have to start from scratch, then you can request a statutory assessment yourself, you don't have to wait for the school to do this. I would highly recommend getting in touch with one of the charities who help parents with advice on SEN. SOS!SEN are fantastic www.sossen.org.uk check website for details of helpline (unfortunately closed over school hols) And the other one, although I have not tried this one, is IPSEA www.ipsea.org.uk check website for helpline (might be open in hols) Please do get in touch with them they will give you advice on getting statement etc.

Can't write any more now as I need to go out. My son is 13 and managed 2 half terms in Yr 7 and has been out of school for over a year (apart from a few days in Yr8). Diagnosed with autism spectrum disorder last year and we have been going through statementing process.

Also, what you say about schools - only mainstream or special and special not being academic - there is another type of school that you can fight to get named on statement, an independent special school, have a google for ASD/Asperger schools in your area, these are generally or more academic children.

Sorry, got to go now, but will be back.

Sharon

Hello Sharon,

I didn't know that about the schools, thank you I will look into it. The statement issue is a whole other series of problems in itself. I got a letter as per usual to inform me that an assessment was going to take place in school, just like everytime before, so I basically thought nothing of it, apart from waiting for it to be issued again.

It was a great shock to me to see that it hadn't been? So I got back in touch with his consultant at the hospital, she has treated him from birth. At the appointment, she indicated that maybe Ryan should go down the diagnosis route now and I should appeal, so I agreed and she wrote to CAMHS...I never got a letter, I waited and waited then I rang the ward back up and talked to the secretary, who said that Ryan had been discharged as I didn't reply to the letter and had missed the appointment??

Appointment for what? and what letter? we ended up having a full blown argument over the phone as she insisted that she had sent the letter out and that it was my fault, I would have to go back to my G.P's and put the phone down on me.

I rang back got the same reply, didn't have a clue what to do, and literally felt abandoned, Ryan was going through the horrendous time at Secondary and so didn't know what to do, thought that nobody wanted to help and that Ryan obviously wasn't that bad and to be honest for a while I did think maybe they are right maybe I'm a bad mother?? what am I doing wrong??

It wasn't until I got to CAMHS that I found out Ryan had been referred to them in 2008 for diagnosis and no letter had been sent to me from them either, so he had got lost in the system somehow, which they quickly glossed over when his diagnosis came through recently, saying that I've waited a long time for this and hopefully I feel supported now

Amanda.