Help...what do i do now?!

[curvychick]

I am in need of some wise advice, as i have got us into a situation and am not too sure how to proceed from where we are!

DS1 (8 on thursday!) has dyspraxia, but i am sure he is ASD/AS. He started at a very large primary school in September, going in at year 3, against my better judgement and on the advice of his previous school to keep him with his peers......Anyhow, i have been trying since he started there to get additional suppoert in place from him and between septemeber and feb he went onto school action and then moved onto action plus. i have been asking since feb for an ed psych which was finally agreed to in May, although not heard anything about it yet. We went down to BIBIC at the end of april and they gave us loads of recomendations to put in place at school. he is generally pretty well behaved at school, but has got progressively worse and worse at home. i have been treing to meet with school since then to put support for ds in place. the earliest that they would meet with me was 25 june, nearly 2 months after i handed them the report from bibic and requested a meet.

In the time since our trip, DS behaviour at home has totally spiralled and for the 2 weeks before the holidays, he was TOTALLY OUT OF CONTROL. He attacked my mum, my dp, me and often attacks his siblings. We have has ds2 and 3 asleep downstairs on the sofas as he is so out of control in the bedroom that they share, it wasnt safe for them to remain in bed whilst he was up there. He calmed down over the holidays but started getting tummy pains (i think anxiety related) the weekend before he was due to go back. I sent him in on Monday despite his protests, and he was wild when he got home which culminated in an attack on my dp (his stepdad) Again, the tummy pains were back on tuesday, so i kept him off for the day. No meltdown that night. He went in on wednesay but again lost it after school and was still ranting, tantruming and telling us how he hated us and wanted to kill himself at 10 that night. The little ones crying on the sofa again.....

Thurdsay morning he got up, i insisted he got dressed in his unform and he became hysterical 'because his slinky got tangled' he wrapped his head in a duvet in the middle of the lounge floor and refused to come out.

While i was talking/crying down the phone to my mum he came into the kitchen and i told him to take off his uniform as he wouldnt be going to school and i havent taken him in since.......He hates it, thinks its boring, has no friends, struggles with literacy, his handwriting is well below average for his age, his social communication skills are again, well below his peers, he's disorganised and has a load of sensory issues too, school unsupported in a class of 30 is just too bloody much for him. His behaviour is taking over the whole family

I have tried my best but i am sick to death of being fobbed off by the NHS and by school, they just pass the buck back and forth to each other.. He is very clearly not coping at school and we get the fallout at home and i have had it. I cant keep sending him somewhere where he is so miserable and i cant handle the effects that his unhappyness has on our whole family.

What should i do? At the moment, i am thinking i will pull him out of that school altogether. I feel that whatever they do now, will be too little too late. if they had been more supportive when i approached them all of the previous times, we could have had extra support in place by now. But they wouldnt listen, and what i have been trying to tell everyone has been brewing for a year has now happened and i dont know where to go from here. I have tried IPSEA bbut they are always engaged. A parent partneship advisor is due to come to my meeting with me on 25 but i have been unable to contact her for advice as she is not in till next week.....aaaaagh, i have no idea what to do, so any advice tips anything will be most gratefully received.

Can you give IPSEA another call? It is what I would do first. The best time to get them is early evening when the rest of the callers are putting their children to bed.

Get some video footage. Request an emergency statutory assessment perhaps?

firstly have a hug and a cuppa from me.

It's all just too much isn't it?

But this can be sorted out. 18 months to 2 years ago we were in the same boat with ds2 ( add/as).

If I were you I would make an emergency appointment with your gp in the morning. Call the school tell them ds won't be in due to stress that is causing physical symptoms and that you are seeing the gp that day.
Ask school for an emergency appointment with the head teacher and senco ( if applicable).. Tell them you need an imediate stratagy so that ds can miss as little school as possible, and that you'll be back in touch with them after you have seen the gp.

This is was our first step.
Then start looking or talking to ds to see where the triggers are.
( I'll bet my bottom dollar it will be him totally overloaded and letting it out in a safe environment I.e. At home with safe people.

This is no good for any of you at all.

( asd/as) not add.

Try contacting the education welfare officer and the educational psychologist direct. Parent partnership should be able to give you their phone numbers if the school won't.

Go to your GP and ask him/her to make notes on his file of the impact the school provision is having on him and also ask for an urgent referral to your local Child and Adolescent Mental Health Service.

Tell everybody that you want him back in school, he wants to be back in school but you are worried about the impact that the unsuitable provision is having on his mental well-being.

You could request a statutory assessment without support - you probably won't get an assessment because he is not getting an support in school but it could be another way to get people to sit up and listen. Even just telling school that you are thinking of requesting one could help.

Make notes of what has happened so far and add to them every time you speak to somebody.

Don't let the education system off the hook. Your son has a right for his needs to be met in school. Fight for those rights.

But while you're doing all those good suggestions I would keep him home. You never know, maybe Home Educating him will turn out to be brilliant......

You are quite right not to send him to school if he is so unhappy / stressed / anxious.

Thank you all so much for replying. I have already spoken to our gp and he has put details on file, and has chased up the tier3 referal to cahms that we have been waiting for. I am hoping to hear from them on Monday.

I have tried talking to ds about his behaviour but he doesnt know/cant articualte what is going on. I have been keeping a diary for the last few months to see if we can identify triggers, and i have also video'd some of the milder meltdowns - it just isnt possible when is in full swing to capture the most ferocious ones though.

I have kept copies of all paperwork and letters to school requesting meetings, and have noted when i have telephoned etc

School have told me that he is receiving daily support on his handwriting and 1/2 an hour session weekly with the lsa on social communication stuff but if they had read his report from BIBIC, or the one from the paed, or the one from SALT or OT, it is very clear that his needs are complex and that they arent going to be able to offer that level of support at SA+level, which is what i have been telling them since last Septemeber. I asked at the end of Feb for them to support me on a SA request but his teacher fobbed me off, i cried, she thought i was loopy, and so we continued, and here we are.....

I really dont want to send him back there, every bit of me thinks it isnt right for him, and i have thought that before he started, but he was excited and happy to go there, his previous school thought he'd be fine, and as usual they all just think i like to worry and fret for fun

I am so sad, and tired and worried. My little boy has changed so much in the last couple of years, he is almost unrecognisable. He is so angry and sad, and it affects the whole family.

I will definately keep trying ipsea tommorrow, and i will call school in the morning and tell them he is off until further notice with the physical and emotional manifestations of extreme stress.

I had similar situation with my 10 year old. I deregistered him from school formally and started to home educate him. That was 2 1/2 years ago.

I didn't do set lessons at home, but cared for him to stabilise him psychologically. If you search for 'deschooling' you may find some helpful information about this.

There is a discussion list you could join on this site:
www.he-special.org.uk

Try calling SOS!SEN as well, 020-8979-2324 and:
www.sos!sen.org.uk

Education Otherwise has the deregistration letter templates on its website:
www.education-otherwise.org

Just thought i would add that he is ALOT calmer having been home since Thursday, so i am cofident it is the right place for him to be, for the time being at least. Thank you all for you support, and i'll keep fingers crossed IPSEA arent engaged for the entire of tomorrow and that they have some pointers!

Milou, thank you, i will take a look at the links when small people are tucked up

If every inch of you thinks school is wring for him, dereg him and home school.
I did this with my eldest ( NT).. Who has since returned to school and is doing well.. If your not out at work, and you can fit it in. Go for it.. You can if you want to and if he is ever ready, return to a school environment or part time school/ home ed.

He was struggling in his last school which was a very small rural school with only about 30 children in the whols school. He has 30 children in his class now and the school has about 800 onm register. He is a small fish in a giant pond.....if he treated peers or teachers the way he acts with us, i have no doubt that people would have sat up and taken notice months and months ago.

I am terrified at the prospect of home educating him, as he knows so much!he is really bright and even at 7knows about things that i dont! And also as hard as he finds the social communication side of school and any social event really, he has to learn strategies to cope. As much as i feel that i want to wrap him up and keep him safe from the world, i wont be doing him any favours in the long term. I also have 3 preschoolers at home with me, so i am concerned that he might not get the attention that he deserves. That said ds2 is off to school full time in Sept, and ds3 will be in nursery for a day and a half each week.......Hmmm

I will look at the info about deregistering him, even if it is only for the short term, just to get him loaded up with tlc, and to re-connect with him.....it is so hard to love the child but hate the behaviour

TACC, thank you for your advice, i feel pretty overwhlmed with the responsibility of this decision, but am really glad i posted for some advice on here. Good old Mumsnet! {grin]

I have a DS who has AS/dyspraxia so I feel your pain - it is a complex set of issues which overlap so you don't know for sure if the problems are one thing or another or there is justification in getting a joint dx. If you are sure that he has AS then there isn't much point in seeing an ed psych - they can't diagnose it and I think that is the first thing you need to sort out. It might help the school take you more seriously if you decide that he should even be at school.

What did the paed/SALT/OT say about the ASD? I think if I were you, I would be contacting the paed to get a referral to clinical psych to get an assessment for ASD. I don't know about your area but here the paed assesses and then refers on to other professionals who then get together for a dx. If you have to go through the GP then you have to but if you can go direct to the paed then it would be quicker.

Does your DS have any OT support apart from the handwriting? My DS sees an OT once or twice a year and then she puts together a programme that the school do with him every morning. I am wondering if you could contact the OT again and ask her to come and so something similar for your DS. I have contacted the OT directly in the past when there was a muddle with the school -they don't mind. You don't even have to get the programme to do at school. There is nothing that can't be done at home, it is just that I get nothing but battles if I try to do it at home but my DS grudgingly does it with them so we do it that way to get it done. It might make your DS feel more comfortable and confident and help with the sensory issues.

Keep trying IPSEA too. I haven't had to use them yet (although I will in the next few weeks because of planning for DS's move to secondary in 2011) but everybody says they are helpful.

Hope it works out for you.

If you deregister him they no longer have a responsibility to make arrangements to support him in school.

It is possible to make school a nurturing, predictable environment and he deserves the chance to experience this.

You can ask CAMHS to write to the school saying that he is not fit to go at the moment and that they should arrange for the medical education team to step in to teach him for a few weeks. It is only about five hours a week so there would still be plenty of time for TLC too.

If you can do that it will give you some time to get the school provision changed to suit his needs or get a statutory assessment if they feel they can't meet his needs from their existing resources.

Another good time to try IPSEA is school run time in the afternoon.
Have been in a similar situation re the behaviour and DS was put on medication.
We also had a horrendous time at Junior School and the damage done has not really gone away. I was not in a position to Home Ed but if you are I can see the attractions.
Will your GP give him some kind of sick note to say he is not able to go to school because of stress? I am sure I saw that on here once.

Another good time to try IPSEA is school run time in the afternoon.
Have been in a similar situation re the behaviour and DS was put on medication.
We also had a horrendous time at Junior School and the damage done has not really gone away. I was not in a position to Home Ed but if you are I can see the attractions.
Will your GP give him some kind of sick note to say he is not able to go to school because of stress? I am sure I saw that on here once.

Another good time to try IPSEA is school run time in the afternoon.
Have been in a similar situation re the behaviour and DS was put on medication.
We also had a horrendous time at Junior School and the damage done has not really gone away. I was not in a position to Home Ed but if you are I can see the attractions.
Will your GP give him some kind of sick note to say he is not able to go to school because of stress? I am sure I saw that on here once.

What was that ima?

So good she said it three times!

I am in same boat I just keep ds off every so often to top up his coping levels i.e half way through a term for a break...I say ds is just ill though.

I also moved ds from a smaller school (not as small as yours) and ds is little fish in huge river! I am trying to look for smaller school again [sigh] with not much luck. Ds is Home Ed 80% of his school hours for last 3 yrs so cant even say the shorter time in school makes a break for the child...ds just doesnt cope in large groups!

Maybe your ds may need some medication to cope with the stress of school life causing the anxiety? I am thinking of going down this road as all relaxation behaviour strats not working either!

DD1 (13) has been using anti-anxiety meds for three weeks and I have to say it was a good move. I was dead set against it when CAMHS raised it in March but I'm glad I had a rethink.

I was determined that school had to be right for her without meds though. I wasn't having them arranging less appropriate provision because the meds allowed her to cope with it. I wouldn't let CAMHS tell school about her taking them in case they decided they could get away with more.

Oops! Certainly didn't warrant three times did it?