Kookoo123

Hello all and particualrly those who gave direct advice, I have to be really quick, as usual. I will post a longer update later. Thanks to your advice and mostly your encouragement, After nine long hard years, our school has finally agreed to apply for SEN so Connor can do his exams in a special school/unit. So it was all worth the effort. Pity they didn't listen earlier, he has now had a total of 1 and a half years out of school, if not more. But we must be happy for the things we have. (Yep, like that's easy). Thanks again. Kelly, smiling for a change! Oh, and Connor is very happy, he said he felt, "um, err, better" about the fact the school have told him they are going to try and help him! That means he is happy, I think. xx

shoes

Hello, I have been really ill with my my RSD ( its a neurological-immunopathic disorder causing severe pain/muscle spasms, short term memory loss and other issues.) My spasms have progressed ro what I believe are dystonic/clonic.tonic tics, a horrible movement disorder to add into the pot. I wil find myself in a pose, not knowing what I am doing. The other morning, ahortly after waking, i had my l arm in the air, holding my eyelids open on my l eye. Didn't know i was doing it - you kind of blank out like a petit mal seizure. My body is permanently tensed up, all over and then my arm/leg/waist/head will jerk violenlty. Yuk Ah well. So I haven't been on much. But this is where I am at: I sent a formal request to the school for cpoies of IEPs/ where his SA+ funding was being used, etc and an overview of the help given to connor, and where they expected to go next. Well, that a week ago and i know its half term, but i haven't even had an email acknowledgemnt. Of course, I forgot to put in a time scale for when i expected this information to be returned. I have now received a letter from head of house warning me about the attendance and threatening me - and it was supposed to be intimidating - it didn't work!- with a meeting and that tthe EWO ( education welfare officer) would be there. I have already, on my own, organised a meeting with the EWO, senco, head of year, head of school, and hopefully someone from CAMHS> It just show that as usaul, th eleft hand doesn't know what the right hand is doing. That still confuses Connor! It means that people are not talking to each other and two or more peoplpe are doing the same thing. Ok, One good thing, and I nominate my Connor for my personal Champion of the Week! (That would be good, a star of the week, not voting or anything, just a thread where people can put in good things someone has done and call that someone their star of the week!) DH and Connor and I were on the way to Charing Cross Hospital in London, for an appointment for me. Well, we were driving along and we heard a gringding noise the a smelled smoke, then amoke satarted pouring out under the wheel arch. I stayed nice n calm and got C out of the car and dad checked. No fire but lots of smoke. Cut a long story short, the car had to be towed and we were in middle of London, younget child organized with child care but daughter not, two hours from home time ans she had left her key at home. Connor managed to stay calm. He was dealhly white, he was worried that the others would be worried because he would be worried, even though at that point they didn't know anything, even 10 yr old son would be told we were running late.He couldn't get that part but at least he was trying to look at something from others point of view. But the best part was he DID NOT freak out. I was expecting screams, tears, fear and all. He just kept saying, this isn't what we expected is it? He even tried to make a joke. I guess it shows our kids can surprise us. That sudden;y, something will click and one more step has been achieved. So many many steps to go but oh so many achieved. It made me look back on what he has achieved since he was a screaming, biting, fighting scared 5 year old. We still have the huge problem of school to be overcome. So, Luckily we got a cab just round the corner from where the car was towed and we got home in time. Unfortunately, its had to be scrapped, it was only about 11 years old. Just because we didn't see the warning light, or maybe it failed. So, thats whats been happening. I just wondered, what is the legal postioin of this request - I am sure they have to provide it, I know and said I have to pay reasonable photocopying charge. And how can I handle this other letter. Part of me wants to reply in full, stating everything I have doen and the lack of action by the school. But that could be seen as beligerent and get them off-side. I also could just write and say, i have already organised a meeting, date to be confirmed. Thanks, guys, hope you are all well as can be. Yet aggain, I have talked for ages but thats nott as bad as when your with the live me. I can ramble for ever! Al the best to you, Kellyx

"Not a hug.... But I leave you all with The Happy Happy Joy Joy Song " thank you so much, SG, it made my morning turn to a happy one. Now I am off to shoe the kids! No, I mean show the kids because the first one sounds pretty awaful! <'> times a zillion for the all of you and the Australians in Victoria. My sister is there and has had a lucky escape, she lives just a few miles from the border of the fire, one of the ones which is now under control. I could be writing a very different post here, we are very lucky. A hug back would be very welcome! Kelly

Hi, karen. i hope i can help a litt;e withthis. When I applied for myself for DLA I was turned down for everything.. I called and was offered th eopportunity to go through th eforms with an advicsor. When I was filling in the brief description, I had said I use crutches for short journeys and a wheelchair for long journeys. (Unfortunately its now wheelchair for all journeys) She asked do you weight bear. I told her i didn't, exept only very occaisionally, to rest my hip. She said, well will change it to swinging through with your leg and say you don't weight bear as what I was doing wasn't proper weight bearing while walking, it was stopping and putting my foot down. I did and got full mobility and low care all based on that one change. One missing or wrongly worded bit and you're refused. Of course, that works to their advantage because some people will just guve up at that point. Another thing I was told when filling out my son's, was do not put ASD or AS on the dx part. Apparently DLA takes a dim view on these terms and just sees them as minor concerns. Even though my son had a DX of AS, i was told to put Autism on his form. Its no lie, he is autistic like all AS kids are, but they can look at the same set of concerns and issues for one child with 'AS' and another with 'autism' and think they are a world of difference. Did you rememebr to put lots of 'needs attention' and 'needs 'supevision' throughout your form? I swear they just count those up and make their decision based on that! (joke) It is worth calling and going through the form with someone. They might be able to point out where you need to change things and also what you say to them is recorded and can be taken into consideration. Well it was like that 2 years ago, i don't think it has changed much. Also, thye should not consider how things are whne interventions/assistance are used such as timetables, visual reminders etc. Like I now ho have a shower stool so i can shower but if i neede to re-apply, I would still put I cannot use an ordinary shower, i must have a stool, and need supervision in case of fall. I wouldn't put, I can shower as long as I am supervised. Then they would imagine me happily standing up like anyone else. So say you have a getting dressed checklist, and it works. Don't put he can get dressed without help! He isn't getting dressed w/o help! "He needs attention while getting dressed or he will not get dressed" Ok, you may no be in the room giivng him hands on attenetion, but you needed to teach him the checklist and ensure he is still using it and check him when he is dressed to make sure its all there. I do not see this as an exagerration. He is getting attention, I give my son attention as in, i have to choose his clothes or it'll be shorts plus a wooly jumper and his walking boot socks plus a dressing gown! I lay them out in the same place, show hime whats there, each item, lay them in getting dressed order then remind him a zillion times to get dressed! Then i invariably have to untuck jumpers, pull his jeans out of his sicks, etc.... you know the routine!.. That is attention, not supervision. As the woman said about me, at any point do you have some one physically assissting you before, during or after getting dressed? For me, it was no. I do similar stuff with my 10 yr ols but thats just his laziness. He has SpLD and is atatemented but I knw if i said, get something warm on we're going out, he'd do fine, might not match but it'd do. I know I am telling you loads you already know but its easy to not see the truth of how much we do when we are so used to doing it. Go through and see if you have really, really enforced the extra needs your son has. have a really good phrase ready for the 'intelligent' comments, should it come up. Personally, I would say something like, being academically able in the structured, predictable environs of the classroom does not equate to being socially and emotionally able in the home and the outside world. Intelligince bears no relation to the needs of the autistic, to his self-help skills, to keeping safe, to personal hygiene etc..... They are as different as a skyscraper and a pig sty. Having the first does not aid his ability to acquire the second. Oh, that sounds a bit sarcastic. But I have had this, from schools. he is intelligent, therefore he should be able to learn these things.... I better finish up before this turns into an essay. Connor gets low rate mobility and middle rate care. PLease do think about asking for a re-consideration and talk it through on the phone. This is much easier than going straight to appeal. I wish you allll the best with this. You are describing my son and so many other children on this site, no doubt, many of whom successfuly have won dla. good luck kelly x

The ministers cat is a felinophobic cat ......which might cause problems...

Yep, done here too and sent on to family.

Hi Sharon, How are things right now, any more news. Do yo have another thread going somwhere? I'd love to keep up and try and help out. Kelly

Thanks Clare, yes he is under CAMHS but as his dr is on maternity leave, they are looking to see who else could be the best source. I have never had COOS even mentioned. It is in my notes for the appt. The wish for the meeting is: EWO, Ed Psych, Me, Head, SENCO and possibly Outreach from Freemantles, they worked with Connor's junior school and the school ignored it all! She mentiones someone else but I cannot remeber who. I have been in touch with PWP before and am going to call them again. Unsurprisingly, I have heard nothing from the school. They are running scared now, no doubt doing damage recovery before they can get blamed for anything. The SENCO and i get on so well, I do not want to upset him but he has done all he can Connor still isn't at school, therefore the situation, according to NAS is a clear indicator that they cannot do enough under School Action Plus. I bet county don't see it that way! But the previous EWO at his old school had apparently said to the current one, be warned, I don't know if he will make it and to listen when I say its too much. They seem to be on my side for a change. I am hoping for the COOS team to get involved, I think, well, know Connor needs someone to talk to and also I need someone. Its hard being at home and having to say no to invites out. And of course, the computer becomes his sitter and although he is programming, its still not good. I feel so much guilt over that. i have 3 hours a week respite with Crossroads which is great. Yes, I feel good now, It si a long way to go but like you said, i feel empowered again after so long of feeling knocked back Watch out, LEA, here I come!

OOps, did a post instaed of pm. sorry just removed it

Hi, everybody, quick update: I spoke to a specialist ed advisor from young minds who didn't tell me much more than I knew but I did get another re-assurance that keeping him off school until they put something in place to proect his mental health was very understandable. We went through writing to the school to demand a meeting and after an hour and a hlaf of doing that the E.W.O (education welfare officer) finally rang. The most important thing I told her was next time they are deciding wehther or not he is coping, ask US how he is at home. She went very silent and then totally agreed. The upshot is a multi-agency meeting but only after she comes back from leave mid-february. She couldn't see a problem with a part-time schedule at school for now. She is goimg to push CAMHS for an appt really soon. She actually said the word 'school-phobic', as in a suggestion. And agrees he needs to see CAMHS really soon, to review himand see just how bad this all is. Answer: very. Then NAS rang and she helped me with the first tsep at parental assessment, something I've done before, badly. I realsised I haven'y seen an IEP since he atarted and some comments, such as he had a helper but then we took her away because he seemed ok..... I thought, hang on, they are not spending anything of his funding on him as far as I can see. Not a penny. So i have requested IEP, overview of his support and copies of outside referral requests. Issue is, county will likely say they could do more yet, but as he has failed at one school already with full support, it could go other way So I'll still be needing you all, but at last i have some confidence in myself. As it is, the young man and I had a chat over bedtime yesterday and he expressed guilt at how he had treated us the previous night!!!!!!!!!1 He just loves us too much, loves home too much, feels safe. But al our kids should feel just as safe in school. As I write, I am still waiting to hear back from the school..... I'll let you know. Kelly

Hello, Sharon, and welcome I am new to the site, just been here about a week but my son is 13 now. I was about to log off and your post caught my attention and i couldn't go without saying something. i am glad you wrote your 'essay' as you call it. You quite obviously needed a very good get it off your chest rant. Even if it hasn't changed the facts, just ranting feels so good. I am going to have to be brief here, but one of the key facts I learned quickly was how not to be seen as stressed out/ can't cope/ blame the mum type meeting and instead be seen as yes of course i am stressed for obvious reasons so I want/deserve/need help, at the meetings with professionals. Hope that made sense. You said in your post about your 2 year old and how people can say "oh, thats just what kids are like". even proffesionals say that but its pretty clear that your psychologist shares your concerns. One thing I wish I did straight away but did later was to sort of divide up the concerns into typical, typical ish and of concern. Like when he was 2,3,4,5 he was (still is) difficult at bedtime. things are better but oh boy the routin is pretty solid, its just an easier to do routine. I learned that the problem was that: his milky drink must be at a certain temperature in a certain cup, he had to press th buttons on the microwave and watch the timer count down, the bedroom door must be at a certain angle and other things, then all ok. But if all I had said he is difficult at bedtime, it wouldn't have made much 'impression' as a genuine ongoing concern. So you could present it in a rough form like: problem bedtime What exactly causes you concern? Blah blah what i just said above Is there anything that helps blah blah Because you will come up against what the professionals call extreme end of normal behaviour. If you demonstarte you are aware of this you will present as a parent who is wanting to learn how to help their kids as opposed to a parent who just can't parent, which was what i was told when i had my first proper appt with a psych. Apparently I wasn't concrete enugh. I was even told this when buying a next stage car seat in well known shop when he was 18 months old.He was always escaping from them. (Lots of padding and he stopped when i worked it out.) Can't you just say no said the lady in the shop. Grrr. So again that issue could go under the above headings as: prob... Always undoes car seta What exactly....... That no amount of distraction prevent it from happening. I have to sit in back at all times, while dad drives. He is distressed by being strapped in. He cries as if he is in pain. What helps extra padding between him and buckle. This was in a form style but i couldn't get it to work as a post Of course, this style might not be for you and you couldn't do it for every single thing but it can really show clearly the areas of life that your daughter finds so overwhelming. It will create a pattern even that you may not have seen before. It jsut makes it easier to talk through with the dr adn see yourself where you may need to go eventually with the help, like interventions or techniques. Like i say, it provides a base plate to buil don so to speak. One which is clear and shows your obvious intelligence! I guess its just shortening the route of all thw wuestions you'll be asked, but you'll still get the, lease don't be downhearted if you do this or something else and the dr doesn't want to know. They all have their ways. JUst a thought, anyway. It might not be for oyu, but eually it might be and others seeking first time help might like the idea. Come to think of it, I need to do this again about how his school affects his stress levels at home... Hoe you get all the help you need, let us know. Kellyx

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I can relate to alllll those things. How come, when I am looking for something lost I only find it when i am looking for something else. And by then I can't remember why I wanted it.

Hello, everybody Well I have taken the first step and printed off IPSEA's Letter. I did this years ago when he was first dx and spent most of hid days disrupting the class and being traumatized. I had no help and wrote a really bad, why? section. The letter from the school never appeared. But they had already written a letter to my Specialist dr explainig his difficu;ite in school, hinting to bad parenting. (they actualy asked me if Iregularly hit him). But I have chated with one of Connor's carers from Crossroads Charity. They are amazing, a antional service so if you feel you do need a break, Pleases call, you can self -refer. Everyone who qualiflies is entitled to 3 hours a week. He egts taken swimming or wall climbing which he is fabulous at. Theres a long list here for places but it moves quite quick, I got service in 6 weeks two years ago and it is so nice, we all love his smiley drippy face when he come in. And we can have some quiet time. Well, perhaps not, his brother is pretty loud. Its supposed to give us a berak but treally, its for him as he adores it and his carers and it makes him so so happy She suggested that for now I simply put that atteneding full time mainstream school has in past and is again severely affecting his mental health and give a brief list of the reasons i.e sensory, environment, teasing, homework, journey home etc. If I do this can I still put in a longer parental observation later? I would like to get this going, the school still haven't contacted me since Jan 16th. I am calling them today, again, was at hospital appt yesterday which was good news for a change. ( no change in a minor heart complint) but that exhausted me so the idea of calling and demanding and explaining, wow its all so tiring. I have a limited amount of energy for use each day and I have budget it like money. So I just wondered if any one has any opinons, as in wait and do a longer, more professional one or, like I prefer get it going? I found a brilliant resource in the NAS pages, called START HERE, for where to go when you don't know where to go. Its amazing and I ended up calling Young Minds who sent huge amount of stuff, most of it very good just a few bits i don't need. And there were resources on that I haven't heard of and will call too. Um, guess that should be in resources. I'll post a properlink in there later when I figure out how. Me n The Lad had a long chat and finally he understand he can't go to college just based on the fact that he is excellant at prgramming already. He writes massivley long scripts on a website he loves and last 'game' he made had 300 hits in minutes and everyone loved it. If anyone says he doesn't have imagination again, I'll.... well, you can imagine. Anyway, he very tearfully agreed that he must go fo ICT, Maths English and science and then the teachers can concentrate on weeding out the kids from thos efew lessons. I just don't want them to insist that after this goes well, he must add in other lessons. I can tutor English and Art at home, tailored to his needs. I'll buy a language cd programme. I know we don't need to follow the curriculum if it were full HE but i will need to if i am aiming for a permanent part time schedule. Swimming once a week and running about like a daft thing in the garden, thats PE sorted! Must ask admins about posting this site I mentioned. its fantastic for kids who want to get into programming and need a springboard. Its so much fun I daren't have a go or I'll be on it all the time. Thanks to you all, again, and Clare, I think I will be needing much of your expertise as in the similarities of our children being out of school. all together now...thats how it works Kelly

Hello, all This is a bit off topic but how do the stuck on labels when you buy them stay on?! Bemused Kelly

Snow..

[My son, aged 11 has an ADHD diagnosis and though I know ADHD can result in some ASD characteristics I think these two conditions are far more closely linked than generally understood. hello, Loblob and welcome. I am new too! there is a great book called the ADHD/ASD connection or something like that. My son, 13 dx AS was first diagnosed as ADHD but one certain, very important fact didn't fit. If taking part in one of his beloved activities, all hypercativity dissolved. His impulsive/hyper behaviour was due to frustration. My dr wasn't happy with the previous dr's dx so put him on a ritalin trial and lo and behold he withdrew completely into silence. Classic autism, he was totally non-communicative. I had him off those within a week and she said sorry but it hepled her prove to others i.e the school (" he is just naughty". WE even did another trial with dexedrine, but same thing again. It was a harsh way to go, but considering we both thought differently to previous docotr and knew it wouldn't work, but I was up against such a brick wall. i am not suggesting you do this at all, but it just shows the AS?ADHD link is so close but so important to distinguish. Of course he could be in the grey area in between. My friend some years ago called them pavement children. As in they are the cracks in the pavement, not one or the other therefore somehow not important? I had a friend whose child did have texbook ADHD if there is such a thing! Her child couldn't talk about one subject for more than 20 seconds. I do not want to dx yur son but he sounds so like mine. I love your description of yoursefl. My NT daughter, 12, says there is a new term out A 'Neek' Its somewhere in between nerd and geek and is an affectionate, loving term. Lovely! I think she is teaching the kids at achool a thing or two about tolerance and acceptance. Sorry if the medicines I have mentioned aren't allowed, I am still getting the hang of what's acceptable for help and what's not So I can't really advise you, sorry. WE ENDED UP HAVING TO START OVER TWICE WITH NEW CANHS (oops, sorry on caps, bad hands day - see my greet) CAMHS doctors twice just in the last few years and now his is on maternyity leave and we have asked for them to start from scratch, a whole new assessment. Some doctors can't see the woods for the tress (liek I told my son, that is an idiom meaning they are looking and see one thing only and cannot see other things that are important ) A fresh pair of eyes and ears might be the only way. Good luck x

<'> To to you all for tyour sopport I am supposed to be writing a shopping list but just wanted to quickly sa thanks very much, I'll keep you all updated and will definiatley be needing lots of help Kelly x

thanks so much, Clare, I had been wanting to do SEN application but its sucha daunting task to do my self and now with this site, iIll have the support to do it. i ahdn't even heard of the COOs team. I have looked at priory group too and found them very positive. Oh, guess what My son is Connor, aged 13, AS dx! Lots in common already. Thanks again kelly

Hello, Mark. wow, I just joined yesterday and now I am already (hopin to) help someone, My son, the one in the 'hello; just below you use signing and also had sever glue ar, which everything was blamed on. A couple of things whic I am SURE youve been told, make sure when you are signing that it is quiet. C, my son would get confused if i signed and his sister was talking. Make sure you have a sign for him My son had really fluffy hair so hs sign was his fingers sticking up! Good news, he started talking at four and it was incredible. It was like he'd waited to get all the talking business learned, then started. From one word to long, albeit obsessive sentances. What joy to hear long lectures on space or blue-tack or whatever With the signing, I guess he just hasn't made the leap to 'labels', that everything has one and the are differnt. Maybe take and print photos too of say two thigs and sign their name then give him the picture and he goes to get it. Like a ball, and a cup. We tried to do two a week new signs and he only ever oearned about 20 basic ones. It was enough to get by. But he had his own noises for things, watch out for those. They are HUGE progress, so if he said 'ugh', we'd say, "*sign name* while saying it wants book? Of course it can take a while to work out these noises. We were advised to Forget grammar with these things but remeber it with general chat. Just what worked for us, but it sowrth a try, Oh and avoid siblings/friends atlking ffor him. His younger sister was astute so she would talk for him and understand him better than us, Good luck, Makr and sorry about typos, if you read my intro you'll understand. Kelly

Hello, everybody. Well it seems kinda sad to me to meet so many, many people all needing somewhere to go because of the lack of help. But at least you are here. Quick overview: Son, 13 dx Aspergers at 6 NOT statemented which is unbelievable considering his portfolio of persistent, extreme problems., daughter, 12 NT but with rare bowel disorder, diet/medically controlled but still gets sick, son, 10, statemented for LD but also with Aspergers traits, dad, he's fine but we suspect he has Aspergers traits too, me, mum, disabled with auto immune disorder. Sorry, don't mean to sound like I am saying, poor me look at all this but ias you know, all family life is relevant. I am going to jump straight in here. My eldest son has been off school for two weeks. Its about the third time in the 9 months he has attended that this has happened, him coming out and blank refusal to go back. Last communication from school, despite emails/calls was on 16/01. He is currently failing his second secondary school. He was punched in the face at the last one. He, I don't now how to put this without upsetting the members and breaking the understandable rules of the admins, but well he only could think of one way to stop to the pain and was hospitalised for 2 nights to keep him safe. The psych who saw him wrote a nasty letter saying he didn't present as someone with Aspergers (he is quite atypical, but hey, isn't his 'presentation' our good work as a family? Like looking at the end of someone's nose often so it looks like your looking at their eyes?) Blamed it all on me being disabled. Well, he was dxd before I got ill. Well I asked his school for a permanent part- time schedule. We are still waiting as they insist its re-intergration only. Waiting on the welfare officer calling. I even called them to find she wrks about 6 hours a week. We've been here 3 times in 9 months.. The issue is, he needs a statemnet, for sure and they agree, but we must get him in school for it... yes and I know he will return to the place where he was at in the old school. He has screamed at me how bad it is, how he really cannot bear it, and please will I home ed him. I just can't, I'm not well enough for that and his siblings need above typical attention He realises so much he said "so they want to me to suffer for months before I can get to a good school? "He cannot understand how anyone could do that to him. he was devastated As well as the number of children, environmentl factors all the common sensory issues, he is bullied often but the worst for him is the drip-feed of teasinh, each lesson, day in day out. He said to me, why do they do it just because I am different? Then he changed it to, no because we are different to each other. Smart boy. He announced a new theory on the big bang once when he was 11, at bedtime, just like that. The same theory is now being investigated by som of the biggest theoretical scientists in the world. Wish I had given them a call at the time! But finally, in year 9 he has realised if you react they get worse. So there he is all day keeping it all in ready to blast it out like a ballistic ball of anger when he gets home. Don't blame him. But then they say, well he seems to coping fine! I argue (well, rebutt) and it goes round and round. All he wants to do is learn, he's been given the opportunity to do his ICT GCSE a year early and he is really excited. But he will not go. They say they cannot stop every single incident of teasing, there will always be one kid who does it. But there's always one kid who gets it and that's my boy. He needs an AS school but can't go w/o a statement and he suffers too much to go to school to get it. He really does suffer with result being chewing the skin off his hands, sucking his arms to bruised stage, banging his head and regresses generally and withdraws into a "more" autistic world. t This has been going on for years and, the denial from schools and it stops now. The SENCO has actually been really good till now, but he has had enough and will not believe me when I say how much he suffers. Yesterday I called social services to ask them to intervene and ask if we could use the new CAF system, especially as one of the categories is children who are persistent non-attenders and those whose problems prevent them learning, or something like that. I ended up in tears for an hour while she listened. Just that amazed me - she listened. I am waiting on a call back Thanks for reading. There are many more sides to this but this is briefly where i stand Just a hello and welcome would be lovely and a tip on where to post this plea for help as I'm not sure which of the threads to go in or pick up a new one. But if anyone has/is having the same issues and would like to share help, advice that would be wonderful. One last thing, I have fixed my typos in this message but usually I just leave them as long as they are readable. hands painful while typing. Patience (ooh, you will ALL have that!) would be appreciated. Thanks Kellyx