shamu

Thank you for all your advice and support. It was very helpful. Our review was today and we saw video footage of ds at school acting like a completely different child to the one we look after at home . Physically withdrawn although co- operating and with an adult standing over him at all times. Something they never admit to in writing but agreed with today, so at least we can now battle social services with evidence he needs one to one at all times... The outcome is that his case will go to panel and he willbe reassessed. So that will take 6 months and the outcome of that is likely to be that his currents schoolis fine So then we can appeal. This will take a year at best and I don't know if I canon age to hold it together that long. I have given up everything to try to keep our family together and as normal ad possible and now it looks as if that chink of hope is not going to be realised ever.... Feel deflated and let down. I could have coped if we'd looked at appealing tomorrow but waiting six months before we can do that feels like a mountain that we can't climb....

I haven't been around for what seems like forever, and I feel bad coming here begging for help at the last minute but things have become so impossible I need some hand holding and help to get through the next week... In a nutshell, we have reached the point where we are requesting a residential placement for our son. He is 8 and a half, extremely low functioning (around 12-24 month equivalent), very active (probable ADHD but failed a trial of Ritalin), requires continuous and constant suoervision at home and in the community, effectively non verbal, not toilet trained and making very limited progress at the LEA SLD school. We believe he will benefit from a waking day curriculum and our Paed agrees as does an independent psychologist. School believe they are fully meeting his educational needs, but no attempt had been made to address the wider picture - we have a 6 year old and an 18 month old and we believe their safety is out at risk when ds is at home with only one adult. His sleep patterns are erratic and we are exhausted, I haven't been able to return to work following maternity l eave as I work shifts and in frontline emergency work, we have no family support locally and have a social care package that doesnt cover the hours where we have three children to one carer, let alone provide any meaningful respite.... Has anyone any pointers of the key issues to raise at annual review that act as deal breakers in our request for residential placement? We believe that ds now needs a waking day curriculum, provided in a asd specific environment but I'm worried that they'll ask us to back up our request with solid evidence.... I'm falling apart under the strain as we have a huge battle with social services going on at the same time so any help will be gratefully received. They don't seem to understand that the last thing I would do is send my beautiful boy away to "get rid" of him but that's what social services believe and I'm petrified education are going to say the same...

I haven't been around for what seems like forever, and I feel bad coming here begging for help at the last minute but things have become so impossible I need some hand holding and help to get through the next week... In a nutshell, we have reached the point where we are requesting a residential placement for our son. He is 8 and a half, extremely low functioning (around 12-24 month equivalent), very active (probable ADHD but failed a trial of Ritalin), requires continuous and constant suoervision at home and in the community, effectively non verbal, not toilet trained and making very limited progress at the LEA SLD school. We believe he will benefit from a waking day curriculum and our Paed agrees as does an independent psychologist. School believe they are fully meeting his educational needs, but no attempt had been made to address the wider picture - we have a 6 year old and an 18 month old and we believe their safety is out at risk when ds is at home with only one adult. His sleep patterns are erratic and we are exhausted, I haven't been able to return to work following maternity l eave as I work shifts and in frontline emergency work, we have no family support locally and have a social care package that doesnt cover the hours where we have three children to be carer, let alone provide any meaningful respite.... Has anyone any pointers of the key issues to raise at annual review that act as deal breakers in our request for residential placement? We believe that ds now needs a waking day curriculum, provided n a asd specific environment but I'm worried that they'll ask us to back up our request with solid evidence.... I'm falling apart under the strain as we have a huge battle with social services going on at the same time so any help will be gratefully received. They don't seem to understand that the last thing I would do is send my beautiful boy away to "get rid" of him but that's what social services believe and I'm petrified education are going to say the same...

Oh sweetheart big hugs, and to your DS too. Children are so cruel and our children just don't get it I think that a specialist placement sounds ideal and your son will go leaps and bounds. I hope they can jiggle the numbers and accomodate him. Shamu

Yay It's great when you have a "breakthrough" isn't it? DS is going to a new childminder at the moment and she's been able to get him to eat sandwiches Shamu

We've had a difficult summer - well, we had quite a good summer due to playschemes etc being available - because we knew that there was no appropriate school for DS come September. He was meant to go to the borough's SLD school in the autistic provision, but a lack of teaching staff meant that he couldn't start. He couldn't go back to nursery either so he's been at home full time every day since last week . I knew they were recruiting, but was told that it would probably be January (when DS finally is of "statutory" school age) before he'd start On Monday I got the phone call I had never expected - they'd recruited a teacher who could start immediately She has a three week induction, then the children will have a graded start, but he'll be in full time appropriate school before half term Can you tell I'm excited!!! We had our first morning for settling in and he seems happy, there's only 5 in his class and the three adult teachers/support workers. I'm over the moon and just wanted to share something positive on the boards as I feel I come here full of woe a lot.... Roll on October!!!! Shamu

Thanks guys. Apparently there's a long acting prep as well, so I'm going to try the regular forumlation for a few more nights and if we have this pattern every time we'll ask DS's paed for the long acting prep. Shamu

We got some melatonin for DS, on the advicce of our paed, and gave him 2mg last night. What a nightmare.... He got to sleep fine - within about 10 mins of getting out of the bath (recently he's been up for at least 2 hours after his bath/bedtime). So that's great. BUT he woke at 4am and has been bouncing around like Tigger ever since . He often wakes early, but usually falls back to sleep within an hour or so. I haven't managed to get back to sleep this time (on the bad times, he's often relatively quiet so I can at least dose...). What should I do? Do I increase the dose (he's nearly 5, over 20kg) and try again tonight, risking looking like a zombie tomorrow (well, I look like one today, but even worse tomorrow!) or do I stop it after just the one time? There's no way we would be able to get more melatonin down him at that time of day so I'm stuck with only giving him it before bedtime. I'd say he's had significantly LESS sleep than usual, and from what I know about melatonin that's not usually the case. Has anyone else had this? Is it a one off bad night last night that may have little to do with the melatonin or is this likely to be the pattern for ds? Thanks Shamu

Thanks everyone. Kathryn, you're quite right that the LEA are in breach of accepted procedures, but Parent Partnership advised me that they would use the "exceptional circumstances" as a get out clause - yup, the circumstances caused by years of inadequate provision and chronic underfunding that have led to fights over 6 places a year in the only specialist setting in the borough. Just to update, the LEA have agreed to send his papers through to the NAS school but are also sending them to a nearby borough's SLD school. Whilst this school is very good, it doesn't have the specific autism provision that we feel is so essential to James' progress, so I wouldn't want him there long term. They have also acknowledged that they need to release a finalised statement, albeit without the school named, as soon as possible in order to give me my legal rights, so at least things are moving forward. Thanks for the support, it means a lot to me <'> Shamu

I am just reeling here and don't know where to go. DS is 4 and a half, 5 in December. He has been in an assessment placement at nursery for the last year, and within 2 months of him starting we had his first annual review for his statement. At that time, the school (MLD school with specialist autism provision) felt that they were unable to meet his needs and suggested that the LEA considered him for the autism unit at the borough's SLD school. The LEA representative was a bit cagey at the time and asked whether he could remain in the school for the autumn term of 2008/09 if the SLD unit was full, but the school held their ground and said no, as they couldn't meet his needs. At the same meeting, we agreed that the statement needed a complete revision as it in no way reflected DS's needs. I have yet to receive this document. In January, as DS's behaviour at home was deteriorating due to the distress of being in a mainstream nursery environment (albeit on the site of a special school) I requested he was moved as soon as possible. No joy there as there is no fluidity in the system and a severe lack of spaces at the SLD school/autism unit. In addition, I was told that as they had to build the new classroom and recruit the staff they couldn't release James' finalised statement as they couldn't name the school. Fast forward to last week and his second annual review - no LEA rep attends (what a surprise ). I still don't have a statement and I've had no news about his placement. A teacher from the proposed school attends and when I ask her what is happening she admits that there won't be a class for DS to enter in September!!!! I come home furious and talk to my case worker who says "we didn't want to worry you"!!!! I met with the SENAS team manager yesterday who has basically said that I have no option but to wait until the school has a place. They are using the fact that he is not of statutory school age as a way of wriggling their way out of providing an education for my son. I am in pieces. He can't even go back to nursery so I will have to have him at home 24/7. And this could go on indefinitely unless they recruit very soon. At the best, it's going to be six weeks with no provision at all, not even home tuition (not that that would be any good). I am paralysed. I have requested that they send his paperwork through to our nearest NAS school which has a space for a child of DS's age, but they have as good as said they won't fund the placement even if he is assessed there. What am I to do from here? I can just see his behaviour deteriorating and my mental health failing and my daughter's opportunities for a few hours of "normal" life disappearing. I've written to DS's paeditrician, our local councillors and our MP outlining the situation but can't see any way it's going to resolve itself. I am so so angry - everywhere the literature and evidence talks about "Early Intervention" and "Every Disabled Child Matters" yet the very people responsible for providing his education show no interest in him or me whatsoever. Has anyone any ideas at all? Thanks Shamu :wink:

Just a sort of update in that things are going from bad to worse.... Haven't managed to get my hand on any poppered vests/dungarees/sleepsuits but they're on their way. We tried going back to resusables but he's worked out how to wriggle out of them and he even managed to get out of his pyjamas tonight which were pinned together with old fashioned nappy pins!!!! Talk about determined.... He's undressing anywhere and everywhere (nursery, Tesco, music therapy etc etc etc) and it's getting very wearing. BUT he has learnt to put his shorts on himself so there is at least one plus side to this constant redressing!!!!!! I may drop a line to his paed but he's going to just shrug and his OT hasn't talked to me for four months so I can't imagine much help there. We're a bit worn out by it, and constantly on edge (we've had poo and wee everywhere - 5 changes of bedding since Friday, the rug has been washed, the patio is cleaner than the day it was laid etc etc etc). My poor DH is dreading me going away this week as he's got them on his own for 2 nights....... Shamu

Thank you for sharing that <'> He has a fabulous voice and I am sitting here all choked up - truly spine tingling Congratulations to him (and you!) Shamu

Interesting thread and to all those that manage it. I am tentatively dipping my foot back in the water so to speak. I went on mat leave for DD nearly 2 and a half years ago and DS decided to declare his autism not long after With all the regression and then a house move and an inadequate nursery placement work has been on the back burner (and they kindly paid me sick leave after my mat leave ran out so that helped with the pennies). But the crunch has come and if I don't get back soon I'll be so out of date I'll have to go back to med school! I'm probably going back one day a week - at least that means I only have to find "good enough" childcare. DS is starting at the SLD school in September (if they build the new classroom ) so we've gone for the nanny option. My hours may be irregular and my husband is looking for a new job which may involve travelling etc so we need someone who can be here when he gets dropped off etc. We don't have any family nearby but work will probably be reasonably OK if I have to take days off at short notice, and I'm hoping that there are 4 other days in the week I can organise appointments on! Just keep your fingers crossed that it works (and that I still know one end of a stethoscope from the other!) Shamu

I did wonder about him being ready to toilet train but I'm almost 100% certain it would be a disaster (again ) as he refuses to sit on the toilet/potty. I think it is all sensory issues about being naked - he'll take his trousers/shorts and nappy off even when we've just put a new one on (so it's not wet nor is he about to wee iyswim) and he likes to be able to have a wee "play" if you get my drift! I think there have been a couple of times when he has wet through his nappy and soaked his clothes and not even shown awareness so I don't think he's ready to toilet train/time even if he didn't have the aversion. I've just redressed him three times so have resorted to a reusable cloth nappy and wrap - he can't get them off even if he tries! But it doesn't actually solve the underlying issue.... I may try some simple visual stories with him but to be honest it's impossible to get him to sit still and listen. I may just get a laminated photo of him dressed to show him when he tries to undress. Thanks and it's nice to know there are others who have similar experiences (even if it isn't nice)! Shamu

Thanks for the suggestions so far! We've had an awful night - he managed to poo on the floor around 9pm (although thankfully not on the bed like after lunch!!!!) and we've just rechecked him and he was nekkid again Oh joy... Off to search for some dungarees I think but not sure what I can use at night - may have to go back to his huge reusable nappies as he can't undo them/slip them over his hips plus there's the wrap AND the nappy! Thanks Shamu

I guess I "ought" to be glad that at the grand old age of four and a half DS can FINALLY undress himself BUT he's taken to doing it at totally inappropriate times So he'll be on his trampoline and suddenly fling off his shorts and nappy and this morning we found him fully undressed in bed in a nice wet patch . Of course, he'll rarely undress when ASKED to Any ideas how to tackle this one? He's non verbal although understands basic stuff, PECS don't work and he's not interested in any stories, let alone social stories. I wondered about using a nappy pin on his PJs but knowing him he'll just keep pulling until they rip. At one point nursery suggested we got some dungarees when he was playing with his nappy a lot but I don't think that's an option in the middle of summer (plus it will make nappy changing a huge pain....) Advice oh wise ones????!!! Shamu

We have recently been awarded the higher rate mobility and care components of DLA but we did need to request them to reconsider the original decision (which was for middle rate care only - DS is 4 and a half, non verbal, depends on us for every aspect of his care including feeding and toileting, unpredictable sleep etc etc etc). My consultant paed fully supported us in our application for reconsideration. What I did (and I don't know if it was this or the paed's letter that swung it) was actually wrote an explanation of why I felt he fulfilled the criteria for "severe mental impairment". I used the crib sheet from Cerebra (if it's not on a sticky here it will be easily found on a google search) and the NAS leaflet here http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1561&a=3330 Basically, if you can argue your corner with confidence you may be able to get at least lower rate mobility without having to go to a full tribunal/appeal. Good luck! Shamu

For ages now I've been sure that James is in the minority in that he is definitely NOT a visual learner. He doesn't look at pictures, doesn't engage with books/photos/TV etc and we've abandoned PECS as he had been at the same stage (step 2 where they move with the card) for over 9 months as he couldn't get the discrimination step. We've tried things like a visual timetable and symbols but he prefers to rip the velcro and chew the cards.... Has anyone else got experience of a non visual learner? So many of the resources out there seem to be targetted at visual stuff that I really struggle with helping/supporting him. He has no/limited expressive language and his receptive language is pretty delayed too. Help??!!! Thanks Shamu

Just a little update - I had him in a neoprene swimming nappy OVER the disposable nappy AND his swimming shorts (which have a net thing but would be useless as he's so loose...) and he didn't poo So this week was fine, but we've not really properly tested the system out yet have we For anyone who has older children who need protection, the company I bought the nappy from can do bespoke larger sizes (I bought the largest size which is 20kg plus and it's got plenty of room for James who is around age 5 in clothes, although he's only just 4.....) If you want the link, drop me a PM Thanks for all the help. Shamu

Thanks for all the replies <'> As usual, you've come up trumps! I will look into a course if they continue using it when he starts school - W Mids isn't that far for me. Lots of info through the various links you've directed me to. It does seem to have an effect with James - he has become far more vocal over the last 6 weeks since I've been doing my own variation - today we spent at least 45 minutes under the duvet in my bed hugging and giggling and tickling each other Shamu

Our SLT has suggested we use Intensive Interaction with James to try and get some foundations of communication and socialisation in place. In theory it sounds quite good, you mimic/copy the child and try and engage with them to establish a social connection and then build on it, and it seems to be quite good for James, but I can't find much info out there about it. I wondered if anyone else had experience of this method and if so what info they found useful. The copying is tiring at times (James spends 90% of his time running back and forth or jumping) and I'm guessing that when he pinches me or bites me or throws food on the floor I shouldn't copy him Shamu

In a nutshell, no, James can't occupy himself at all. But then on the other hand, if I leave him in the garden he may jump on the trampoline for an hour or he may come off and lie in the grass.... He cannot "play" at all, and his play skills are much less advanced than Bea's, who is not yet two..... He loves staring at the leaves in the trees and the clouds going past so a day like today is quite "fun" for him, but it's not particularly good for his development. He doesn't want to share his space with anyone, so if I go and be with him he'll stop.... I remember when he was 6 months or thereabouts, having to constantly find things to stimulate and entertain him. I have virtually never had to do that for Bea. Shamu

Thanks for the replies - I will look into whether any of the neoprene nappies will fit him and use that over the swim nappy. It's particularly frustrating because until 7 weeks ago it had never happened before and now it's happening more often than not. I wonder if it's the water temp (we used to swim in a hydro pool which was uber warm and he never pooed there) but there's not much I can do about that.... I'll let you know how I get on in my quest! Shamu

Mods - if this isn't appropriate in here please move it wherever you feel it is appropriate. I could really do with some advice on this one - mainly to find out whether I'm the only one who feels like this or if anyone else feels the same. I hope it's not too controversial Basically, I would love to have another child but worry about how we'd cope if we were to have another child who was as severely affected as our son. Our daughter is nearly two, and it breaks my heart to see her desperate to interact with her brother (she dotes on him and he just about tolerates her presence at the dinner table....). I feel as though I have two only children, living their seperate lives with barely a connection between them and I never expected that. I know having another child won't necessarily mean my daughter has a playmate and friend (I certainly fought like crazy with my younger brother!) but I think that I'm very aware that she is likely to be my son's main carer when my husband and I are no longer in a position to look after him. I would imagine she would value the support of another sibling but then we can't guarantee that another child might not be autistic too. I feel like I go round and round in circles, I have wanted another child since my second was born (which was before any concerns about James were apparent) so I don't think it's just because of our circumstances, but the decision seems such a big one now. My husband is in two minds, and I just wondered how others made any decsions about further children. I think my husband is worried about my mental state and how I'd cope with another child full stop, not even taking into account the chances of another child on the spectrum. Also, James' autism became apparent around the time that Bea was born, and I think the stress of the change when she arrived was immense and "triggered" his regression (I have accepeted that he was always autistic, but he hadn't "declared" it until the time she was born - hope that makes sense!) and I worry that if we have another baby he will regress again (he hasn't really made any progress at all in the last 2 years, but the thought of him regressing even further petrifies me) I know this is a really individual thing, and I know there's no "right" or "wrong" answer, I just wondered if anyone else feels/felt this way and how they reconciled themselves? Hope this all makes sense and that I don't ruffle any feathers.... Shamu

James goes for swimming lessons each week and loves the water and class (he doesn't actually understand the instructor etc but they are geared up to SEN children and happy to work with him). However he has developed a rather frustrating habit of opening his bowels at some point in the lesson every week and we have usually only just managed to rescue him out of the water in time to avert a full drain of the pool... He is not toilet trained and has no awareness so I use disposable swim nappies but wondered if anyone had found anything that is totally effective? I can't manage these near misses much longer and as he is quite loose it's only a short time before we do face a full drain if I don't find anything better soon! We have tried to work out what the triggers are as he doesn't usually poo at this time of day, but they seem to change weekly and I'm desperately hoping it's not a new habit that he has to poo in the pool every time..... Shamu