Mother in Need

College is not doing very well with IEPs. My middle son has a statement but I have never ever been invited to creating his IEP, and the only time I ever get to see one is during his annual review. I've always had the feeling that they have always only been created because they have to, they have never done any of the things mentioned on them. But as he is doing so well now, I have never brought this up, preferring to fight my battles where it counts...

Thank you for your responses! That quote for the SEN Code of Practice is very useful, now why did I not think to look in there... I requested a copy of my son's records as his needs are not met at school at all and I have given the school an ultimatum. I am about to get the LEA involved and I wanted to know what the school has done/has not done so far, to prove that my concerns are valid. And by the state of the records, they now seem more valid than ever before... My son has been on SA+ for about 4 years now, he has been at College for a year and a term, and despite having requested NUMEROUS times, I still have not had ANY meetings with the SENCO... I have only been sent an IEP recently, but only in response to my letters and threats, and the IEP is so **** that there aren't holes but craters in it... but this is only more ammunition to show the LEA, who have been paying for a TA for him for some years now even though he isn't GETTING any real TA support from College. And none of this is documented in his Records. I am hoping that the LEA is not going to be any too pleased about this, and will get involved and put matters to rights. But then, I might be dreaming here... However, the fact that they provided for a full time, one to one, TA for him for the whole of year 6, on SA+ and not a statement, shows that they do care when given the facts (by me!). I just wanted to make sure that my feeling that all info relating his SA+ should be in his file, and any records of involving outside agencies also. The problem this day and age I guess is that emails are not documented in the same way, so a conversation via email to a 'specialist' may not be in it - or should they still be?

I have just received a copy of my child's educational record, but I am rather confused as I thought it should contain a lot more than it does. There is no mention at all of my child's SEN, no mention at all of the fact that the LEA provides a TA for him for a few hours a week, no mention of him being on SA+, no IEPs (though I am convinced that school does not do those at all), no records of any notes sent out to teachers explaining his needs (though school keeps saying that all teachers are aware, but I'd like to know exactly what they are aware of), no copies of letters sent to or received from the LEA, and so forth . My question is, what should a child's educational record contain? Does anyone know? Thanks!

Ear plugs maybe, they are invisible to outsiders?

Hi there, I am at the moment doing a course to become a sleep practitioner for children with disabilities. I am only half way through the course, so am in no way qualified just yet. I can not do a proper assessment from a distance, so can only give a few bits of general advice. The first of this is, is that a child of 9 only needs 10-11 hours sleep a night. So if you are putting your child to sleep at 7, by 5 in the morning he will have had all the sleep that he possibly needs (unless he has additional medical needs of course). The second is, do not give your child anything to drink before he goes to bed or during the night. Do not give him food or drink, or entertain him in any other way - so definitely no DVDs... It is perfectly normal for a child to wake up in the night, as a matter of fact EVERYBODY does this very regularly during the night; the problem is that your son does not go to sleep BY HIMSELF when he does wake; you will have to work on this. Waking up after 6 hours of sleep fits in exactly in the natural sleep cycle, so that again is perfectly normal, as I say, he needs to learn to self-soothe. This may take time but about 95% of children can learn/re-learn how to do this. I hope this is of some use to you.

JsMum, I understand how you feel about medication for your son, I used to feel that way. But after my son threatened his older brother with a knife, twice, I HAD to change my mind on that one, and ended up begging the psychiatrist for medication. He is now on respiridone, and I have to say, it has changed our lives, and especially his. He himself doesn't want to stop it now, or even reduce the dose, as he feels he is now so much more in control and able to do things that he couldn't before. As with all medication, we still had/have to tackle all the causes, and support for him is still vital, but he is now able to access that support and has learned to modify his behaviour an enormous amount. I am still glad that I took that road, it has given us all a life again, he is SOOOOOO much happier now, and I am sure that I would not have been able to continue caring for him had things continue to go the way they were, even if only for the safety of his brothers. As it is, it has left his younger brother scarred emotionally, who now has mental health problems (at the ripe old age of 10...). All I'd like to say is, don't dismiss the idea of medication, you might find it the beginning of a slow but steady improvement.

Both my two youngest sons have school refused, both with extreme behaviours, both very defiant and violent, one so distressed he even tried to commit suicide. Now both are back at school, though both with full time (including break times) 1-2-1. My youngest is still not fully settled in (over a year of problems now), but my middle one is fully settled and doing fine. When he first refused to even get out of bed, dressed, to the bus etc, he wasn't diagnosed yet and school was refusing to accept that the 16 hours support he had were nowhere near enough. Anyway, to cut a long story short, he ended up for 6 weeks in a CAHMS day unit, who also tried to get him back into school. They did lots of good stuff for us, but in that they failed. His behaviour when he was at school in those days was such that school told me 'it was better for me to keep him home for a little while'... Not knowing at the time that he was actually being illegally expelled because they weren't meeting his needs... anyway, long story short, in the end his reintegration went extremely slowly, going from standing in front of the school building with him throwing stones at myself, the TA and another helper there, to slowly allowing himself to be drawn into the school for a cup of herbal tea, to staying for an hour in a separate room, to spending a bit more time, and on and on and on. We did have times where we had to completely backtrack, and start again. Also, this only got us so far, and it became clear he still could not cope. Finally he was offered a place in the small (4 students) EBD unit and in there he started to feel safe and began to slowly access his lessons, first from the unit and then slowly by going out to a few lessons. Now he goes to all but PE lessons, though at all times still has a TA with him. This is now nearly two years later, and he is doing good, achieving good grades and even talking about doing A levels! My youngest was a different story again, he couldn't cope for similar and yet different reasons, and he too ended up in the CAHMS day unit for six weeks. They DID manage to get the reintegration started, although once again it has been a very slow progress. He was discharged from the day unit in October, and we still have a way to go. But once again, 1-2-1 TA support has been crucial, lots of understanding and letting him decide (almost) when he is ready to go into the class, lots of times spent doing the work in a separate room, I have also spent MANY an hour staying with him so he wouldn't run away from school again, and getting him to accept to be in the building. With him too we are having a lot of set backs, especially after weekends (roll on tomorrow morning...no) and half terms and holidays, or after a difficult time at home with his brother, or simply (ahem) a change of teacher or other factors. I hope this has been useful to you JSmum, both my boys ARE back in school, the youngest is also in his last few months before going to college, and the other doing his second year of GCSEs now. Both boys have been/are being reintegrated into school, after some pretty heavy school refusals and severe problems. But it has been a slow progress for both, and CAHMS has been invaluable in both cases (as for my middle one this led to obtaining his statement). It can be done. With a lot of patience and understanding. By taking very small steps. And then taking some backwards again. By perseverence. And by making the children involved see all that is being done for them, and that it is all done to help them feel better within themselves. That they are not alone. That all involved are trying to understand what specific parts are so difficult for them, so they can try to find a way around that and make it work.

Thanks Lukey, for telling us about your experience. I would like it to go well for my son, so he does not have to go what you went through. It seems that the timing and amount of work experience is different in different areas, in our area it is held at the very end of the school year, for two weeks. The teacher has still not rung me, and I have left messages for her via my son's home to school book. His unit assures me the messages have been passed on, hopefully she'll ring in the next few days so this can finally be sorted out. I am waiting to see what comes of this phonecall before going to the CAB, due to the distance involved. Fingers crossed.

No, no placement has been sorted out yet, and she still hasn't rung me up either. The idea of him actually working IN the school is a great idea, surely they could treat it as proper work experience, he'd be on familiar grounds and with a TA. I have no idea who is responsible for my son during work experience, if he is off-grounds then that would become the employer I suppose, and that could be fun.... The TA, or rather, the range of TAs used for him, if not used BY him, school is always rather quick in putting them to work elsewhere, they are always short of helpers.

I agree Canopus, different schools should do it in different weeks, and also, a list of possibilities should be given to the youngsters so they can get an idea of what is available and where. However, this is not the way it works, and ALL the onus is on the parents, both to find and transport them to and from their placements. For some parents this is OK, they have a larger social circle than I as a carer do, and there are often two parents and/or extended families to help out. I am completely alone with the boys, and I can't work due to their caring needs nor do I have many friends due to my caring needs. Just like most of the parents on here I imagine. To clarify, yes my son is 14 but he is a young 14 in year 10. Also, his school has 'done away' with year 9 altogether and he is actually doing most of year 11 work, and is in his second year of GCSEs. Hence his activities are those formerly meant for year 11 students; he'll be nearly 2 years younger than other youngsters from other schools in the area doing their work experience (and GCSEs...) at the same time. What support have those youngsters with AS who have already done their work experience, found most helpful? It might help to have some ideas for when that lady finally rings, some clear needs specified IYKWIM. Apart from for all the other parents who might be reading this!

Thanks for your answers everyone. To be honest, I still don't know what to do. I did talk to him about the library (which is actually attached to the college itself), but as he is dyslexic he hates the idea. He hasn't read many books in his life at all (I read them to him plus he receives tapes from Calibre), and is hopeless with the alphabet; he really doesn't feel he'll be comfortable there. As for finding a placement, we too have the problem that there are over 300 youngsters all needing a placement at the same time; the school has a catchment area of over 300 square miles, which shows how rural we are; jobs are few and far between, public transport indeed expensive and VERY patchy, and unsuitable for my son anyway. The school does not help AT ALL with placement finding, not even for basic shop work (not that there are many sizable shops around), and he hates the idea of doing that anyway. Finding something that might suit his interests is very difficult, we did try a few places but they were all booked a year ago already, our college is not the only one doing work experience so that makes it even more difficult. I guess I'll have to wait for that coordinator to ring me and tell her clearly that she is in breach of the DDA. And see if she can think of somewhere suitable for him, with support...

That's what I thought, so thank you for putting it down so clearly. So I suppose I'd have to tell them that if they don't, they'd be in breach of the disability discrimination act? I haven't spoken to the lady in charge yet, but from what my son tells me, is that she told him that one reason is that it is a matter of insurance, a TA would not be insured in the work place? Mind you, even he had the feeling that he was being fobbed off, and I simply can't believe that could be the real case?

I have been trying to find out who is Cornwall's Connexion's special needs/disability adviser via the net, but no luck. The County Council has the one 'access to work' adviser, but that person is based at least 50 miles from here, so not that useful. Haven't been to CAB yet, that too is a 40 mile round journey.

I can't follow your link Angel, would you mind trying that again? Canopus, I don't know if it is compulsory or not, but I'd certainly like him to do it, and so does he. It will give us a a bit more of an insight if he could cope with the world of work, and what adjustments would be needed to make him cope. The idea of having him home for god knows how long after next school year, is not one that I cherish... somehow, he NEEDS to be able to cope with further education and employment... I don't know how to make an appointment with the Connexions advisor at school, but I'll see if his big brother can find out for me, he's in the same school. I always find it awkward to have to speak to these people while my son is present though, as I feel I cannot fully express myself, as I do not want to give him a negative outlook on things, my worries don't need to be his and would affect him badly. Also, I may say one thing (which I'll know to be completely True), and then he'll deny that as he won't see it that way at all, and everyone always listens to him and not me, but I am definitely the one who knows him best, much more than himself, and then the opportunity to make them understand is once again totally lost. Similar things happen when they talk to him by himself, and then there is no way at all to repair the damage.

Have just rang Connexions, and they were totally 100% useless, didn't have a clue re disabilities nor the legalities involved....... "ring your doctor and maybe they can advice"...........what a brilliant piece of advice...... I'll try the CAB next, but the nearest one to me is 1/2 hours drive away.

Thank you for your advice Angel. I will contact Connexions, though I have had contact in the past and have not been very impressed, but maybe with this specific problem they might be more helpful. My experience with PP has been quite negative, and I am staying well away from them. It is good to hear that transport might be a possibility, though I don't know who to contact over that. I've never had much luck with obtaining anything around here without quoting some clear laws or going as far as a solicitor's letter, so simply ringing up the LEA is not going to get me anywhere... Have you had any negative come-back from your son managing the work experience by himself? I am thinking here in terms of statement, I need to safeguard my son's hours of help and have the feeling (well-founded) that if he managed that by himself the LEA'd really take away a lot of hours, and without them he really couldn't cope...

Hi all, I haven't been on here for a long time but have never forgotten you all and the wonderful advice to be had from here! Right now, I could really use some of this advice: My 14 year old has Asperger's, is in a unit with full-time 1-2-1. With all this help and support he is now coping well and doing really great! However, in July he has to do two weeks of work experience. First, I need to find him a placement to which I can drive him every single day. We live in a village, public transport is limited and anyway, he goes to school by taxi and has never been on a bus by himself, he couldn't cope and especially not with a change of bus/train to get anywhere. He has a younger brother who needs to be brought to school every day as well, and I am a single parent, so my possibilities are limited. Secondly, and much more importantly, at school he has 32.5 hours of 1-2-1. AT WORK EXPERIENCE HE IS EXPECTED TO COPE ALL ALONE WITHOUT HIS TAs. The work experience coordinator has told him explicitly that he cannot have any support at work. I am now awaiting her phone call and would like to tell her very much where to go! I feel, however, this would be more productive if I could do that with the right legislation etc. I have been trawling the net for the last hour or so, and can't find any.... I have tried ringing the NAS, and have left a message but they stated clearly that that message won't be read for another 10 days, let alone responded to. This lady from school should ring some time this week, so that is too late for me... Also, his placement should be sorted by the first week of February, so time is running rather short. Has anyone had any experience with work experience, and/or anything that might help?

Thanks Summertime, that clearly explains things. Not good news though for us, as that school is the only other school my 10 year old could go to... and matters at his present school aren't well at all.......... I simply don't know what to do now.

Does anyone have any info on what they call a 'managed move' from the child's existing school (with which there are too many problems) to another? And especially what happens if the school of one's choice is full in that year group? Can one still insist on a managed move then, or is that the end of it?

Have just heard that the electricity companies have to give a 15% discount if you are on a low income and you have children to care for (don't have to be disabled either). I have applied and they have started discounting from the day I rang up! Equally so with the water, their package is slightly tougher in that you need to be on a low income and have 3 children under the age of 19 in full time education for whom you receive child benefit; then (AFTER ONE HAS APPLIED FOR A METER AND THEY HAVE PUT IT IN) they will 'cap' your costs (please note they will not 'cap' your watersupply!) to just over �400 a year. I have applied for the meter and as soon as that's been put it it will save me �200 a year!!! You do NOT need permission from your landlord to change over to a meter. You can also get this discount if a member of the household has very specific health needs that requires large amounts of water. Most places I go to I simply say '1 disabled and 1 carer' and most places will give us a discount, whether they were planning to or not! And my son definitely doesn't LOOK disabled.

Nice one UltraMum, there's some good publications in them! Meeting (at school) is tomorrow, and rather nervous about what they are going to say and how they are going to try to continue to wriggle out of their duties, but I have some questions ready for them that will hopefully make them think.

gosh, don't know what to say... Incredible that SS brought him to you, and not taken care of him themselves, respite is definitely what is needed... What would hapen if you point blank refused to have him? (not within earshot of Steven ofcourse, that would only hurt him so much), then they would have to provide something, wouldn't they?

Emailed PALS, they even do an advocacy service, maybe that'll get us somewhere. CAHMS have now put him on the list for the specialist day unit, though this won't be till September (they only have 6 kids every 6 week period). Meanwhile ofcourse school has still not responded, though the psychologist has managed to get a meeting with them for Thursday. The next local school is full up, though someone did tell me that I could appeal that, but again, this would take ages. Another school would be logistically very difficult for me (transport and being in two places at the same time, never been too good at that one!).

Two peas in a pod, so similar in their situations at the moment (your son and my 10 year old, DS3). Took DS3 past the school building this morning, and he had a real panic attack, went really pale, fast shallow breathing, not responding to me, had to drag him past quite a way before a recovered somewhat. School hasn't still even acknowledged that he HAS needs, despite that he has not been in the classroom since Easter and not in school since 2 weeks before half term. School won't even acknowledge my letters....... Clinical psychologist has dragged them into a meeting coming Thursday though, so hopefully I'll get something useful out of them then.............. As for Social services..... My story is obviously not helping you one bit, just letting you know you're definitely not alone <'>

Curra, your situation and mine sound like they have a lot of similarities, with both my 10 year old and 13 (nearly 14) year old. Multi agency meetings are never quite what they are supposed to be, and in the end you need to keep a close eye out on who promised to do what, or it still won't happen (and make sure to take notes during the meeting and ask for a copy of their notes as they will not be the same). My 10 year old is out of school altogether at the moment, totally not coping, not having had an education this whole term. Urgency? Forget it, it all goes at snail's pace and no-one seems to care one bit. It is very demoralising and exhausting.... Saying that, in the end I got somewhere with my 13 year old, so hopefully you too will get there with yours! And I think between us we could write a very damning report of how Social Services ahs treated us and ignored us and in general not done one thing that was supposedly done after the girl Climbie's death. Every Child Matters? Only those that are cheap and boost their public image up, not all the ones that really should matter....