Marcus having a rough time at school again

[joybed]

Hi continuing from my post regarding flexi schooling Marcus continues to have a really bad time at school. Even the little things are getting him down now. Every night he begs me not to send him to school and literally sobs it is breaking my heart. The SENCO has been failing to return my calls and his tutor never responded to my last letter so in shear desperation i wrote another letter last week which was polite but basically said i was concerned for my boys mental health and that i didn,t think mainstream was the correct placement for him. I also mentioned that parent partnership were now involved as well as the SPED team. That night i had the deputy head on the phone saying that he was sorry it had come to this and he would try to help M as much as possible. The following day M is no longer doing PE for the rest of the year which made him a little happier. On Friday night the SENCO left a message on answer phone saying she wasn,t aware I had been trying to get in touch and left her home phone number. DH thinks she is now scared for her job as i know the SPED team have put in a complaint regarding her attitude. She was very apologetic when i rang her back and said to call her whenever I needed to. However after all her reassurrance she still said she thought M was attention seeking . I really don,t think this school are going to change and hate sending M to school every morning. The SPED team suggested i withdraw him until a suitable ASD placement can be found but i am concerned they will then not try hard to find a suitable palcement if i am doing OK HE. Also not so easy when you work 30 hours although i can work ariund this, any suggestions. Do you think i should withdraw him.

[aro]

You could ask you GP to sign him off as unfit rather than withdraw him. I think the LEA is then obligated to supply a tutor for some hours each week (?) hopefully someone on here will know for sure.

 

Good luck,

 

A x

[Enid]

Joybed I withdrew my son aged just 12, this time last year from mainstream, I found they were spurred on to find him a placement rather than let him drift, I should have taken him out sooner as by then he was in a bad way mentally. I too work and it was very difficult but we got through, you have to! good luck whatever you decide. Enid

[Canopus]

Withdraw! Withdraw! Withdraw now!

 

Marcus can always return to school in the future if he wants to...

[Cat]

 

If the SPED team are suggesting that you withdraw your son then things must be pretty rough. I have a friend who withdrew her son when the school he was attending closed down and she knew that the new school would never meet his needs. Far from the LA sitting there twiddling their thumbs they actually got their finger out and found a suitable placement.

 

I left my son in school until it was too late and he had a total breakdown from which it took him four years to begin to recover. I then had no choice but to home ed and he never returned to thing which was the best thing we could have ever done for him. I firmly believe that some kids with autism simply can not do school. My son was one of those kids. I know that academic results are important but not when the mental health is shot to pieces.

 

If you do get a sick note then the LA will have to put in some form of tuition and it might also help to get things moving.

 

Cat

[joybed]

Marcus actually says he had a good day today but couldn,t tell me what exactly was different about it. He is still very stressed at home though, i can always tell by his behaviour at home. DH is very against even flexi schooling partly because he worries how i will cope and also because i work shifts and he is worried i will get no sleep when on nights etc. I feel that to have my happy little boy back would be worth the extra work. I have just returned to work after a couple of weeks off with stress and my manager basically made me return to work and said i could work whatever hours i liked as long as i went back. I have negotiaied to work 1 night shift in the week and a 15 1/2 hour shift at the weekend so home ed is possible. My parents have offered to help but this in itself opens up a new can of worms as my Mum and i don,t always see eye to eye as i have previously posted.

I have found a suitable school but it is out of area and i am not sure we would get funding, nothing in area suitable. I am going to make an appointment to go and see the school tomorrow.

Last week we had a major incident of bullying Marcus was pushed over at breaktime this really unnerved him and really made him scared to go to school. The school did deal with it well though. The PE is a major hassle even though they have decided to let him do alternative activities this school year thay have said he will have to go back to it next year as it is the law they have to do PE, is this true or can exceptions be made. I am angry at myself as i had reservations about sending him to mainstream comp anyway but was talked into it by the school and the SPED team saying he was bright and could cope. He is so obviously different it makes me very sad but also extremely protective.

Unfortunately i have little support at home as my DH doesn,t understand his ASD at all and tends to be really strict and handle things wrongly IMO. Their is a lot of tension between DH and Marcus and i am piggy in the middle. I thought it was because Marcus was his stepson but i now realise it is directly related to the fact he can,t cope with his ASD, i have realised this as my other boy is undergoing assessment at present and DH has said that if he has special needs he will find it hard to bond with him, he openly shows more affection towards our daughter as she is normal (his words not mine) and this really hurts. if i do anything for the boys that doesn,t include Lydia i am accused of spending more time with them. All this is very stressful as you can imagine.

So how do i go about removing from school do I have to deregister him or do i just contact the SPED team and say i want alternative provision making. His statement is due for review in February. i am seeing parent partnership on Wednesday and she said not to do anything until i had spoken to her as she was going to look at options. The other thing i have just remembered is that the SPED team said they were putting somebody into school today to observe him and according to Marcus this didn,t happen. Maybe i am paranoid but i feel we are being let down by the system and they are just using my son as a way of showing they can cope with ASD in mainstream or am I becoming cynical . We shouldn,t have to fight like this for our kids rights. Dh has told me not to rock the boat too much as the other 2 have to go their eventually and they are a good school but B#####ks to that I will continue to fight for him no matter what. Also if our other son has special needs i will probably have to go through all this again so its good practice . Thanks for your kind words of support and excellent advice. I need to get reading about home ed if that is the way we are going (I know it wasn,t too long ago i said i could never home ed I am now eating my words). Thanks again.

[Kathryn]

Hi Joybed

 

If you still want him to stay in the education system, I think it's best not to deregister him altogether, as the LA will no longer be responsible for him and will probably cease to maintain his statement.

 

If you go down the medical route, as others have suggested, and get him signed off school due to stress, then the LA will remain responsible for providing home tuition (I think the norm is still 5 hours a week) until an appropriate placement is found.

 

Good luck with the school visit tomorrow.

 

K x

[Cat]

<'> Sometimes we all reach a point when we will eat a plate full of anything just to make life easier for our children. It's not giving in (I say that because some people will say that we are giving in to our children) it's accepting that our children are no longer coping and that we are going to have to act to prevent things from becoming even worse for them.

 

I am tempted to say that were it I would go and speak to my GP (go to the one who you think will be most sympathetic) and ask him for a sick note for your son. I had one for my son and it means that the LA can not make life difficult for you while you have the note. Ask the doctor to issue a note until Christmas at least. Be sure to tell them that the SPED team has advised you to remove your son from school. If the doctor can put extreme stress and anxiety onto a sick note then that should also give you some leverage to apply some pressure to the LA to find a suitable school. Six weeks into Comp was where it all went wrong forever for my son. If you can get the sick note then there is no need to de-reg the sick note will cover your son's absence. I am saying to go the sick note route because you have said that you are seeing Parent Partnership on Wednesday and this would buy you some time without jumping ship altogether unless you have to. If you do have to I am more than happy to let you know what you need to do and to point you in the direction of a 'must join' SEN home ed group where you can be 100% sure that you will get the advice you will need. Even if you do not always see eye to eye with your Mum she is offering to help and I am sure that you can meet each other half way if you have to. My Mum can be difficult to so I know all about that to.

 

My ex was convinced that there was nothing wrong with our son and that all he needed was a firm hand. That turned out to be the last thing he needed. He was a very sensitive boy who required sensitive handling. Fortunately his step dad has one the extra mile to understand how he ticks although it has not always been easy. We also share an autistic son and he has always been quite amazing with him. I sometimes wonder if it is a fear of the unknown that makes it difficult for some people to accept that a child/person has a disability or an inability to accept anything that is not perfect whatever that might be.

 

I am also tempted to say to you seek some advice from IPSEA or Network 81 they would be the people to help you to fight for the school which you know would be right for your son. They would also tell you that school?s are supposed to make reasonable adjustments for pupils with special needs and that they are also allowed to differentiate the curriculum to enable them to meet the needs of a pupil with SEN. This means that your son does NOT have to do PE if it is making him ill. OFSTED have even written a report saying that any lessons which schools know to be difficult for a pupil should be removed from the pupil. So basically they are spouting rubbish. I have the OFSTED report if you need it.

 

Eventually stress does take it?s toll especially if you are spending your days playing pig in the middle (been there, done that) it's not easy that is for sure. I have an issue with my husband's sister who quite openly showers his daughter from his first marriage with gifts but will not even see our son. My son has even asked himself if it is because he has autism. I have no idea how I would cope if it were my husband who was finding it difficult to accept our son. What is normal anyway?

 

The thing is if you do not rock the boat no one is going to do it for you and I have lived through what can happen if you are fobbed off by a school whose only real interest is in the ?normal? kids who are attending. Don't be afraid of home ed it will not only lower your sons stress levels it will also lower your own.

 

Cat

Edited December 8, 2008 by Cat

[joybed]

Hi Cat can i have a copy of the OFSTED report please or can you point me in the direction of where to access it. Marcus came home from school quite happy yesterday and went to school without too much of a problem (apart from he has lost yet another piece of essential equipment) so I didn,t think it was appropriate to not send him this morning. I have spoken to the SPED team again today and they said they did put in a specialist LSA yesterday but Marcus wasn,t told she was there, they said he coped well but had an LSA sat at the side of him the whole time and Monday is a good day for him, also not observed at breaktime. So feel this isn,t representative of M at school. They are now suggesting keeping him in school until a meeting has been held and i have spoken to parent partnership. They feel if he is taken out of school then we will not get him back and will end up HE all the time (TBH I don,t care anymore as long as he is happy). I have told them he will continue to go but at the first sign of any stress i am getting him signed off sick as i will not put him through the stress anymore. Not sure she was very supportive of this decision but M comes first.

After making the decision to HE yesterday i was dissapointed his day had gone well, that sounds horrible doesn,t it but after the weeks of stress i finally felt i had an answer and then he comes out of school all chilled and having had a good day but i am sure it will revert again. Will need lots of support if i do decide to HE as I don,t feel i am intelligent enough to do it really particularly regarding Maths.

[bikemad]

Got to be honest if I was being told by people 'in the know' to pull him from school then id pull him from school. Im still undecided bout H/E my lad n am taking it day by day with his school at the mo.

[joybed]

I am now feeling really confused. I sat down with marcus yesterday and we wrote a list of all the positives and negatives regarding school. the negatives far outweighed the positives. M was very upset when he came home from school yesterday couldn,t tell me specifically what about but very distressed. We had an awful evening with all 3 children the 2 boys very hyper combination of christmas, school nativity etc. Lydia upset by the behaviour of her brothers. DH came home and was unable to cope with the complete chaos of home and we had an argument. i then did a night shift. Came home this morning Marcus didn,t want to school and was upset, feel bad now but sent him as not able to make a decision due to lack of sleep. Had a disturbed sleep today with various phonecalls from SPED team, school. Parent partnership just gone who were wonderful. Have information on the special school i would like him to go to but after dicussing options with Marcus he doesn,t want to go to a special school mainly because he will have to travel miles to the nearest suitable one. He wants either flexi schooling or HE. SPED team feel flexi not an option as will confuse Marcus they also don,.t want me to take him out of school at all as they feel we will never get him back again. My gut instinct is to have him signed off but my manager won,t give me the time of work next week. Really in a dilemma. Will see what kind of a day he has had and get back to you. If it is bad he won,t be going tomorrow.

[Cat]

 

If you pm me with your e-mail addy I will send you the OFSTED Report you have asked for

 

Cat

[Kathryn]

Hi Joy,

 

A tough time for you and I sympathise.

 

Just a thought - is it worth waiting until after the Christmas holidays before you make a decision on schooling? It's a time of general upheaval and disruption, and Marcus might be affected by some of that. If you just get to the end of term in whatever way you can, you'll have a couple of weeks off to rest from all the pressure and to consider your options.

 

K x

 

 

[joybed]

Hi all just an update. We managed to get Marcus to the end of term by cajoling him and encouraging him. Had lots of meetings in the meantime, CAHMS, parent partnership. SPED team and it was decided that we would have a MDT meeting on the 8th Jan. i am going to look around Dawn house school in Nottingham on the 7th which sounds like a perfect school for M if i can convince the LEA to fund him. We had a good christmas but for the past few days M has become increasingly anxoius about going back to school. we are having repeated temper tantrums and lots of tears and worries regarding going back to school, Their is a teacher training day on Monday and then back to schoool on Tuesday. He has said he doesn,t want to go and has said in a round about way that he won,t actually go to school. This causes me concern as he is certainly not streetwise and i would be worried as to what he was doing. He has said that on a few occasions he hasn,t gone to class and hung around the corridors, I said to him that surely the teachers notice he isn,t their and he said they are not bothered they just assume they are ill.

The trouble is he has spent a few nights at his Nannas and never mentioned school the minute i picked him up he started. My Mum thinks he is winding me up but my instinct is telling me it is genuine stress. I don,t know whether to send him on Tuesday and see how it goes or see my GP and get him signed of sick and see what the outcome of the meetings are. Any advice appreciated. Thanks in advance.

[joybed]

Another question. If i get him signed of sick are the LEA more likely to find him a place in a special school or they will just think she appears to be coping leave her to it. Also am i ever likely to get him back to school. my fear is he will like being HE and refuse to return to school. I want whats best for him but also have to think about the rest of the family and i know DH is against HE and so are my parents. DH because he doesn,t think i can cope with work and everything (we can,t afford for me to leave work) and my parents think he will have a lack of social interaction and it won,t be good for M to be at home all day with me. Has anyone any personal experience of this. It is his 13th birthday today and he is still stressing about school despite the fact we have a big day planned with all the things he loves to do. Any advice anyone.

[Cat]

 

I am going to answer both of your posts in one or do my best to.

 

When my son started to tell me that he would not be going to school despite he meant it. He found different ways to Marcus to make sure he could not attend; like making sure that he did not have a pair of shoes left that he could wear, binning his school uniform, and having a good attempt at smashing up his room. This makes him sound like a child who was out of control and willfully determined. I know now that he was actually demented despite what anyone else here or anywhere else might think. I know.

 

I would be very concerned to learn that Marcus has not been attending some lessons and that the teachers appear to be blissfully aware of this fact. I would be seeing the school to make sure that they make sure that he does turn up to his lessons. This will probably mean that he has to have some kind of book signed by every teacher which could well add to his stress and distress but at least you can be sure that he is not wandering the streets stressed and distressed. It is a well know fact that children with ASD usually chose to off-load with those whom they feel safest. That person appears to be you as far as Marcus is concerned. If he is anything like my two sons he will also pick up vibes from people. My two sons would never dare be anything other than on their best behaviour with my Mum and she is actually very good with them, but they both sense that the lady is not for turning when she makes a stand. Not a bad thing for sure but not a good thing if you want to have successful two way communication between someone with ASD and the other person. My sons are easily put off from taking part in a conversation of they think that it is going to end in them having to defend themselves.

 

I have a friend who found a school that she knew would suit her son, took him out of school by actually de-registering him, and then fought the LA for the school she knew would be able to meet her son?s needs. She was honest with her son from the very beginning telling him that if she managed to get the LA to fund a placement at the school she wanted that he ?would? be going back to school. She also promised him that if this did not happen he would not be going back to school. She won her case and her son is now settled in school. It was not easy but it did happen because she did make sure that the school could meet her son?s needs. There are parents here who have had their children at home and have also managed to get them back to school. I never managed it with my son but that was because he was pushed to his limits before I took him out and he had already suffered a complete breakdown. You can fight the LA and win but I think that you need some pretty weighty and clued up people to help you. IPSEA could probably help you in that direction.

 

I am not certain that a sick note will kick the LA into action it might and then again it might not. LA?s are all different and it depends on who is steering their ship.

 

We all want what is best for our kids. I got into trouble here a short while ago because someone felt that I was implying that it is only those of us who home ed who want what is best for our kids. This is not so. We want what is best for our kids and most of us know when a school is not meeting the needs of our kids. If every effort has been made to get the school to change direction and things are still not working do you let your child sink under the pressure? Home ed is a very personal choice and decision not made any easier if your hubby is against this. I could no longer continue to see my sons suffer and yes they were suffering because they did not have the support. My hubby was not as committed as I was but he is now probably more pro HE than I am. I have actually written a paper about AS and HFA and socalisation. I believe that children with AS and HFA need lots of help to enable them to communicate and socalise effectively. Sitting them next to a peer group that they do not understand or whom they have very little in common with is not enabling their skills for some of them it is actually disabling them. I understand that this is my opinion but I am pleased to learn that this paper has now been used by some teachers who are doing a course led by one of our top ASD Unis.

 

My son was 13 when I realized that he was never going to get back to school. That was two years on from his breakdown and in the middle of the worst 5 years of our lives. He lived in a room alone for a great deal of those years. He has now changed beyond belief. He loves mixing and socalising when the occasion is right for him. He was the life and soul of his own 18th Birthday Party and sat in a Restaurant full of friends and family for his 21st. If anyone had told me that this would be possible when he was 13 I would not have believed them.

 

Cat

[Kazzen161]

Another question. If i get him signed of sick are the LEA more likely to find him a place in a special school or they will just think she appears to be coping leave her to it. Also am i ever likely to get him back to school. my fear is he will like being HE and refuse to return to school.

 

Just to clarify: getting him signed off sick is not the same as HE. If he is signed off sick, he is not at school because he is sick (anxious/stressed/etc), but he woudl be expected to go back to school once he was no longer sick. He is still registered at the school. This should not affect your fight for a different school (it may even help).

 

To HE you would deregister him, and there woudl no longer be a place at the school for him. If you did do this, then the LEA would probably do very little to find him a different school.

 

 

[joybed]

Hi and thanks once again for your excellent advice. I know that HE and getting him signed of sick are 2 different things but what i meant was while he was off sick i would have to do some form of HE with him until suitable provision could be found. I am not going to deregister yet as I need to keep my options open. I have to make lots of phonecalls today and Marcus is really pushing me for a decision as to whether he is going to school tomorrow or not. It is such a daunting though to be doing something so against what everyone percieves as the norm. Even CAMHS told Marcus he has to go to school because it is the law and their is no other choice, I really had to bite my tongue as I didn,t want M to lose faith in them. My Mum said yesterday that I know Marcus better than anyone and if i feel he is too stressed to go to school then get him signed of, the trouble is i know that if we had the same consevation today she might tell me that i am giving into him and he is just trying it on as he wants to be at home. The other consideration is i am back to work tonight for 3 nights and don,t relish the thought of no sleep although if i put him on the computer i could probably grab an hour or 2. The twins are back to school today and it was a struggle to get them up and ready as neither of them would sleep last night but at least now i have time to sort all this out. M is happily on his Wii for now. Let you know what i decide.

[joybed]

After talking to IPSEA and looking around the internet for ever. I have contacted my GP and had Marcus signed of sick with stress and anxiety. IPSEA said he sounded far too stressed to go to school nad that they were concerned regarding his mental health, (tell me something I don,t know). So as of tomorrow he isn,t going to school. I have to say though i am now terrified don,t have a clue regarding HE tried to think of something to do with him earlier and just ended up sending him on bitesize. Where to I start can anybody suggest any good HE advice. I have spoken to the NAS who are sending out the info they have on HE. Have also orderd the book home eduacting our ASD kids or whatever and also freerange education. Havn,t been able to contact parent partnership or the SPED team and will ring school tomorrow. I feel so sick now can i do this, am i prepared for the fight ahead. Also DH not happy suggested i send him to his Nannas while i work. Help

[Canopus]

I have to say though i am now terrified don,t have a clue regarding HE tried to think of something to do with him earlier and just ended up sending him on bitesize. Where to I start can anybody suggest any good HE advice.

 

The best thing to do is not to panic or rush into things.

 

I have spoken to the NAS who are sending out the info they have on HE. Have also orderd the book home eduacting our ASD kids or whatever and also freerange education.

 

Start gathering reading material on home education but don't go overboard too quickly. I've seen parents starting out HE rush down to a bookshop and emerge loaded up with countless National Curriculum textbooks that end up gathering dust because they find better and more interesting reading material later on.

 

Ask Marcus what books he is interested in reading and let him peruse online bookshops like Amazon and Blackwell to find things that catch his eye.

 

[Cat]

 

My advice would be to join this list http://www.he-special.org.uk/ asap. You will get all of the advice and support that you require to home ed Marcus. One of the most recent topics has just been about an other half who did not want his wife to de-register their child to home ed - so believe me we understand because many of us have been there.

 

The books you have ordered are the right ones

 

Looking forward to seeing you there soon - am Cat there to. Don't panic home ed can actually be fun!

 

Cat

 

[Kathryn]

Hi Joybed,

 

I hope you see a decrease in Marcus's stress levels and your own) now that he's at home.

 

Obviously Marcus is still registered at school and you aren't officially home edding him, so you don't have to take full responsibility for providing all his education yourself. As he isn't attending school for medical reasons, he is entitled to home tuition provided by the LA. The usual amount is about 5 hours a week, and usually covers the key subjects of English Maths and Science, depending on tutors available. You may have to bug your LA to set this up.

 

Home ed- in the permanent sense of the word- has to be your and your husband's decision so don't feel under pressure to go down this route in the long term if you feel it's not for you. It's a very individual choice.

 

K x

[JsMum]

 

 

 

Just wanted to give you some of these, <'> <'> I understand how stressful this is, and your doing amazingly well, I was where you are now last year so I do sympathise, I am rooting for you to get the right support, god bless.

 

JsMum <'>

 

[JsMum]

Also DH not happy suggested i send him to his Nannas while i work. Help

 

Could this be possible at all, it is going to be very important to get a break as well, could nanna come and stay with you for a bit, or if your son is up for the idea could he go to nannas for a short break a couple times a month for the time being.

 

JsMum

 

 

[Cat]

 

Home ed- in the permanent sense of the word- has to be your and your husband's decision so don't feel under pressure to go down this route in the long term if you feel it's not for you. It's a very individual choice.

 

No one on the HE-SP list would ever attempt to pressure anyone to home ed. Most have first hand experience of how hard it can be and few have turned to home ed without trying everything else first.

 

I have to say that I am feeling as if it's most un-cool to say here that home ed can work and can be fun. Home ed is still legal and most of us are totally sane and not tree hugging hippies (not that there is anything wrong with being a tree hugging hippy). We are already different because we live with autism home ed is just another one of life's differences.

 

What is the point of this forum if we can not offer advice and alternatives when all else fails?

 

 

Cat

[Kathryn]

I have to say that I am feeling as if it's most un-cool to say here that home ed can work and can be fun. Home ed is still legal and most of us are totally sane and not tree hugging hippies (not that there is anything wrong with being a tree hugging hippy).

 

Um... Where did I say this? I'm not being critical of those who HE or suggesting that you shouldn't offer this advice.

 

What is the point of this forum if we can not offer advice and alternatives when all else fails?

 

I agree with the above in principle. But in this case all else may not yet have failed. If I read Joybed's posts correctly, she hasn't deregistered her child and decided to HE as yet. Whether she does so in the future is up to her, but at the moment LA home tuition is another option open to her and I am only suggesting it as another alternative.

 

There may be people reading this who feel repelled by the thought of home ed and feel that it couldn't work for them, but may feel guilty if they don't choose this path. I just want to say that it's OK to feel like that, and it doesn't mean you're a bad parent if you choose to stay within - or return to - the educational system.

 

Cat, I've nothing but respect for what you've achieved with your boys out of the system. I'm just offering another perspective, in the interests of balance, that's all.

 

(Apologies, Joybed, for sidetracking your thread!)

 

K x

[joybed]

No need to apologise i am happy to hear all sides of the argument and will loolk at every option with an open mind as we are at the moment desperate.