kirstie

No Karen, you're not missing something ! The reason they want to move him to a full time mainstream school is because the one he's been integrating into isn't our catchment area school and the ed psyche is 'unwilling' to recommend to the transport department that his taxi continues should i make a successful placing request for him to remain at the mainstream school, which i find really unhelpful as a 'grace and favour' place in the taxi he already takes could be requested but she point blank refuses. The other thig that worried me was the Speech and language therapist said that lewis has exceeded all of his targets. IEPs and was age appropriate for any tests she has done (last May mind you, except his expressive language which was 2 years behind his chronological age which she says he has caught up with significantly) what worries me is that if he goes into a whole new mainstream school and doesn't have SALT anymore will he fall behind in his language again because he isn't getting the input he needs especially as they go through school the language gets harder, then all i can think is i'll have to fight yet again to have him assesed and SALt put back into place should he need it. The very thought, Anyway i've contacted ISEA who are very happy to take on our case as i do feel i'm being bullied into something these lot think will be great. The head techer actually said to me, "Wouldn't it be great if he was playing with the children in your community, i can picture him out on his bike playing with his friends..." i thought what planet are you on missus, to which i replied "Yes he's doing well and great progress has been made but he's not 'all better' now he will always have difficulties!" i felt like screaming but felt myself welling up and really had to keep it together in that meeting. It was horrible. I think being 6.5 months pregnant hasn't helped the old emotions but i truly believe i'm making valid points reasons for him staying put. This is one boat i'm not willing to rock and i will fight tooth and nail. we haven't got him this far with me being a shrinking violet. Thanks so much for your replies and understanding it really means alot!

Hi everyone, looking for a bit of advice here! Many of you might know that my son Lewis has been in a language unit (attached to a mainstream primary school) now for almost 2 years. he has come on leaps and bounds and is totally thriving on the unit and the integration he recieves into the mainstream class, he is a different boy to that of 2 or 3 years ago and i'm really proud, i can't tell you. However my problem is this, after having had a review meeting today with his Ed Psyche, Unit teacher mainstream teacher etc etc they are all recommending he should move on to mainstream full time. After the initial feelings of "No way!!" i realise he needs more stimulation and would be better placed in the mainstream setting (i think ) but we have locked horns on where that should be. The School he is at just now is out of our catchment area, basically it's at the other end of the city to where we live and the Ed Psyche won't (although she could) recommend to the transport department that he continues with a taxi should i get him a place in the school. I don't want to rock the boat and i feel a change of school would be really difficult for him and he loves going to school so i don't want that to change. In fact i'm adamant he's not moving, i'm not keen on our catchment one for various reasons but they keep saying it will meet his needs (how ed psyche knows this i don't know, she's never even been there!!) and i have the gut feeling i should keep him where he is but am feeling totally railroaded by them. They were all talking amongst themselves saying oh yes how wonderful it would be for him to move to this school! Also i have asked Lewis if he would like to move to a new school and he said no, now i know that under legislation blah blah Scotland his views and feelings MUST be taken into account. I don't know, i'm really trying to keep a lid on it as i'm getting more and more angry about it all but i feel as though they are all making these decisions for me and my son and they have no right. Has anyone else had any similar experiences? or even had their child move from specialist provision into Mainstream with a successful outcome? Oh, yes, i don't drive either so i couldn't take him myself other that on two buses every day (with a toddler and a baby at rush hour with Lewis's sensory overload!!) H E L P !!!!

poor wee souls, i can sympathise as a sufferer, and it aint pleasant as an adult. My son has always been constipated but when stressed he will vomit and have stomach migraines. He goes very pale and shaky sometimes and will fall asleep wherever he is and when he wakes up will sometimes throw up and then he's fine! Stress most definatley can bring out physical symptoms, not that i'm a Doctor or anything but i know in my boys case it's true.

<'> Hi Tinystar and welcome, I'm really sorry you're having such a tough time of it. My husband isn't on the spectrum but i just wanted to say that my son with AS (is only 7 mind you...) gets very obsessed with girls and always has. In Nursery he would follow one particular girl around and it had to be addressed as he was trying to kiss her and it was getting a bit much. Now that he's in School he has another girl in his language class and various in the mainstream class. In his language class the speech therapist had to devise a social story telling him he could only sit with her on a specific day as he was getting very possessive and hell mend anyone who sat next to her!! he seemed to take this on board and isn't as clingy but he does still adore her. I hope you and your husband can work things out, please let us know how you are getting on, Take care, Kirstie.

I deferred my son from Primary School when he was in mainstream nursery. It was the very best thing for him as there was no way he would've been able to cope be it a special school or mainstream school. He then went into a language unit a year later (attached to a mainstream primary schoo, for kids with ASD's) after shedloads of supports and behavioural therapies etc and he has loved it. He definatley needed that extra year so we could access the supports and try to turnaround some of his behaviours. My son integrates with his peers in the mainstream class and it doesn't matter he's a year older than the other kids. I know parents can defer entry to primary school even if their child is NT so if you have the backing of the staff then i can't see why it would be a problem. Good luck and keep us posted.

This is something i have worried about with my own son, he is only a child right now but when he reaches teens and older i have wondered if alcohol might be something that tempts him to help him relax and/or socialise. The alcoholism runs right through his fathers family going back generations so that in itself has always worried me. I would say yes enjoy yourself now and then but drink sensibly and be careful. There are a lot of not so nice people out there who are only too willing to take advantage of an intoxicated person whos inhibitions have going awry after having a few. Not only that the morning after the night before is never any fun when your head hurts!! Have fun but take care!!

Hi Alan and welcome aboard!! My son with AS is only 7 but i do wonder how he will be during his teenage years too. All i can say is hats off to you mate coming into a family and new relationship isn't easy for any stepparent but when it includes a child with differences it's very hard and i think you are taking a great approach and a very laid back one which is the best way right now. My now husband and i got together when my son was 2 and his behaviours were at their worst but he stayed (not sure if i could've if i'm being totally honest) and was the calm one of the two of us i have to say. He didn't push for my son's affections and took it in his stride that such things as shows of emotion were hard for my boy and hugs etc had to be on his terms, but the rewards are amazing and my boy adores his stepdad and they have a fab relationship, great pals. I think it's not unusual for ANY child to have the feelings that your stepson has right now in not wanting to share their mother, especially if they've had her to themself for a long time so try not to be disenheartened it will take time. But just stay calm and do what you're doing and he will see he has nothing to worry about regarding you taking their Mum from them. You're totally on the right track and it's obvious you care, so patience and time...... All the best i hope it works out for all of you.

<'> TN, I care, WE all care and we would most definatley miss you. You bring a heck of a lot to this forum and i for one think you are a very witty and intelligent person who i am proud to 'know'. I know it is small consolation to you right now and i totally empathise with your feelings even though i do not have AS. The drill sarge is dragging you back to your feet for a reason, you want to be here and you want to be accepted and talked to and listened to and you ARE strong enough to keep getting back up again no matter how much you might feel you're not. It has been such a hard year for you but you have impressed me no end at how you have shown you can bounce back time and again. Things happen in life that are pretty *!?* but it will get better, please trust me. I think the person in the charity shop does not seem to have very charitable nature and i would avoid the inappropriate outburst by avoiding the person/shop too. You are doing great but don't give up at the first hurdle with your book, i don't think it's easy to become a published author so keep on truckin' as they say! (no, don't ask me either i've never understood that little gem myself!) And as for the job front, don't give up on that either- keep trying and i hope that sometime soon your dream job will land on your lap and you'll be making us all jealous. It is out there but they haven't found you yet, again it will take time. Other than that all i can say is we are all here to listen and talk and i'm so sorry you're feeling so bad. Said assistant SOOOOOOOOOO doesn't know what she's missing Take care and keep on posting. <'> <'>

<'> oh Caroline, I'm sorry you're visit was such a let down. The help and support i got was from the Communication clinic and most definatley not the CAHMS. I felt patronised and like a right plank when i went to a meeting a couple of years ago now. And for the record, i too kept Lewis out of Christmas concerts when he was at Nursery because there was no way he was going to cope (had tried before) and didn;t want him being the centre of attention for the wrong reasons either, and the Nursery (probably amid much sighing with relief and mopping their brows) agreed that it would've been too much for him to deal with. WE DO KNOW OUR KIDS BEST and when they finally get that into their thick patronising skulls the better. Some, but not all, of these professionals really are a bunch of gits who make you feel so inadequate. However ona lighter note, it will get easier for Robert given time and support, re the Christmas plays and parties. I know a lot of our kids will always hate these things but from our experience Lewis who is now 7 is so much better placed to cope with these social situations and can block out the noises/brushing past and bumping into him and general confusion that comes with a social and pretty much unstructured situation (parties). I have put this down to the massive supports he's had and his growing maturity. I never thought we'd see the day when he would actually enjoy doing these things either so keep fighting and again, contact his Paed, we both know she's great and will do her best to help.

Hi ellisisamazing, How're you? I'm glad you decided to join us. It was nice to hear that things are relativley calm for you just now. You're post was very positive and i look forward to hearing more from you!

Hi, and welcome! First of all i just wanted to say that Shabu (sorry if that is wrong spelling??! memory is poor!!) is slightly unrealistic if she thinks a 9 month wait is unrealistic. Many here have been where you are now and still are and have waited much much longer, depends where you live i think. Also your boys behaviours aren't your fault. I found that when i changed ways of speaking to my Son it made a big difference. But we can't know that untill we are told by professional people so please don't blame yourself. I think you ahve a great insight into your son and are doing a fantastic job. I would say to try the route of private assesment if you can afford to but as others have said also the NHS route because that is where a lot of the supports will lie if and when he is diagnosed, those doors so tightly shut will begin to swing open- i promise! Don't be afraid to pester i have said it many times but he who has the biggest gob and all that, have to say thats what i did and it definatley helped I wish you all the luck in the world and keep on posting, let us know how you are getting on. But i think your boy is a lucky little guy to have you in his corner. Take care. By the way, some of his behaviours sound so similar to my boy (dx AS) the pausing before answering, it's the processing of the questions asked. Make it simple, i always remember being told not to do this "Right Lewis get your coat on because it's freezing outside and you don't want to catcha cold blah blah>>>" but instead " Lewis, coat on!" will suffice, not because he doesn't have good understanding it's just too much information to process and unneccessary. Quite effective, but i'm sure you're on to it already as you seem very clued up. Good luck. <'>

I would also say apply. I had my DLA pre-dx too when he was around 4, and then was awarded untill he turns 12 (heaven, i can't bear the thought of those forms again too soon). I think it comes in very handy for things like 1 to 1 'special needs' swimming lessons, the trampoline he loves and now we are looking into rock wall climbing and horseriding lessons for him too. It all helps and you are entitled. I do get a bit angry sometimes when i think of folk in our situation won't apply because we don't feel our cases are worthy yet alcoholics and addicts can get it.......... think about it, an ardous process i know but worth it!

Tally, I'm thinking of you. It sure aint easy but yes you so have support here and always will. Take care.

Hi Caroline, Lewis didn't talk about wanting to die but he would now and then say he was going to kill someone, his behaviours were so similar to Roberts. The anger and being unable to wait (you know when you said his Dad was in the Bathroom) i think that can be quite a common thing with our kids. However the knife situation i think was handled verywell. You didn't draw undue attention to it and diverted his attention to something else, something they always told me to do!! Seriously you can't win with CAHMS well, in my experience anyway. I did video Lewis when he was in full throws of meltdowns and a while later he found this video and put it on, he found his behaviour fascinating to watch and i don't think he could quite believe it himself. He was by that time a little older and able to see how angry he was. He watched it over and over. Maybe it would be a good idea to try it? We didn't know for such a long time what Lew was talking about and he would get so angry with us for not understanding but we also realised when he was doing it in the playground at Nursery for example it meant something to him and was a 'safe' place to retreat to in his own mind, a comfort even, when things were probably very manic for him. I hope your home visit proves to be helpful and you get some support because i think it's terrible to be left wondering all the time how to deal with and why these behaviours are happening. Good luck and keep us informed! Kirstie.

It's hilarious. I would've laughed too i'm afraid!! Sometimes what else is there for it but to have a good old snigger! Lewis couldn't pronounce the word clock when he was little and would miss out the L i'm sure you get the picture and it was quite amusing but we did have to rename it in the end!

Tally, <'> 2007 is your year and just keep that thought in mind! I know only too well how hard it is. My ex was/is an alcoholic and would disappear for days on end, come home to 'recharge' his batteries, lay in bed shaking and sweating making everyone elses lives a misery by being a bad tempered nasty git. I had after several years of trying to help him, mopping his brow and pandering to his every whim (when he was trying to go cold turkey) and being his general nursemaid, unpaid skivvy and punch-bag. In the end it got so bad because he had inherited his Grandmothers money, generations of money went to the worst possible person and he partied with everyone and anyone. Leaving me at home with the kids while he was either trashing very expensive hotel rooms and being arrested or picking up shall we say working girls and bonking his brothers wife! (i didn't actually know about her untill i had left though!) When i did finally leave for the umpteenth time i really knew i wouldn't be back. I had been to refuges and left a hundred times or more been beaten physiacally and mentally and sometimes (as bad as this might sound) wanted him to drink so he wouldn't hurt me (it was the only time he wouldn't verbally attack me or otherwise) but when i did pluck up the courage 6 years ago now (almost to the day) i moved into my dads, where it was hard i won't lie. It was the 3 of us in the one bed in a freezing house and Lew behaviours were at his worst, but i was safe and free. Eventually i got my own flat and moved in 6 months later and it was so liberating. I didn't do the dishes if i didn't want, went out for tea with the kids, did what i wanted. My money was my own and for the first time i wasn't taking a load of coppers to the shop for bread and milk. It was fab!! All this time on i have now married my first love who i met when i was 14 and we have a baby together and another on the way. Seriously you will be fine and you deserve to be happy. But keep strong and stay determined. I wish you all the luck in the world as it seems your situation is only dragging things out which will wear you down even more sooner or later. Let us know you are ok and all the hugs i can send <'> <'> <'> <'> <'> <'> <'>

Hi Tighna, as you asked i thought i'd reply! The swearing thing was a HUGE problem for my son when he was a bit younger. It was however used mostly in context when he was angry or frustrated so it was never deemed to be tourettes, but i think it can be a problem, well for us it was. He's out of it now thankfully as it would get very embarresing on the bus!! As for the programme itself, i thought it was really good. I was sceptical too and was pleasantly surprised at how well it was done. From the pictures in the kitcken/front door (i'm sure so many of us have had them plastered all over the house at some point!) to the Clarkes secenario, oh boy, do i remember it well!! to the people staring in the street to the kicking off and grappeling with my son on the floor. It was lovely the dog situation worked out so well for them, but we found when we got our dog Lewis was awful to her and the dog still won't go near him, he's not mean to her now but he still gets in her face a bit too much if you know what i mean. we found Lewis's 'thing' was the baby. We were so worried about it and how he would react but he adores his little brother and has only ever been sweet and loving to him. Having our baby has been wonderful in every way of coarse but for Lewis it taught him to be kind and gentle and he has shown he can be caring to another person. He is in fact amazing with little kids, it's just his peers he doesn't get along with so well- ach well can't have it all can we!!

TN, Sorry you had sucha ###### day out work thingy old buddy old pal, Do you HAVE to go? i don't understand why it is compulsory if it is. I mean you work with these people all day why the hell would you want to socialise with them too. I know a lot of people who feel like that, so you are not alone. I too think that you're boss is an a**h*** for not being more thoughtful to your needs. Quite possibly the time could be nigh fora new job, which in itself is a daunting thought but like i keep telling my Mum, why go to work day in day out and be miserable. It just aint worth it, you only have one life. so mardy bum who doesn't like wearing girls clothes (ahem) maybe time to check out the job section in the paper?? <'>

Tell me your not feeling better now TN???!!!!!! Anyway, my small NT brain is thinking tell that guy to @*!* right off and get someone else to do the artwork. Hope you're injuries are better and SOMEONE PASS THE REVELS, for heavens sake what does a girl have to do to get some chocolate around here!!!!!!!!!!!!!!!

Yes, he might surprise you! Will there be any other kids from his class/school? I know my son quite likes it and they chat on the way to school. Also won't he have an escort with him? The thing is it is very stressful for you and maybe you need to give yourself a breather. How about you try him and see how he does, warned well in advance with social stories etc and see how he copes? It's never easy knowing what do do for the best is it? <'>

Thanks j'smum, that was lovely thing to say! It just doesn't get any easier does it?! Just when you breathe a sigh of relief......!

Thanks for your replys and support guys! J'smum, i think it sounds quite confusing, but Lewis is in a Language unit which is attached to a mainstream primary school. It is for children on the autistic spectrum. There are around 6 in my sons class and the same in language class 2. You can imagine the children have varying difficulties and Lewis is deemed to the more able in his class. His language is good, and his understanding is so much better and his behaviours are a hundred times better than they were. He is accessing the carriculum and integrates into the mainstream class with his peers every day for phonics/language, maths, reading sometimes art and p.e and sometimes assembly with a learning assistant. He does have problems from time to time, i.e- when he was finished the work he was assigned he would just leave the class because he didn't know what else to do, so the teachers have to be very specific and tell him what to do AFTER he's finished. Also the mainstream teacher (thought she was fab for picking up on this) noticed the boys at Lewis's table were playing a game with their milk cartons. They were lifting the little flap at the bottom and counting up the numbers and whoever had the highest won!!!! you can imagine the problem that posed. So the teacher noticed Lew getting very uptight and dumping carton after carton of undrunk milk in the bin and trying again she clicked what was happening and stopped the game and explained to the other boys there are certain things Lewis might find really hard to cope with and they must be kind and understand that games like this aren't always going to be appropriate for him (i'm not sure if lewis was around when she was explaining this) This is the kind of teacher he needs to be around an ASD aware one! All of the Mainstream teachers will be of coarse so i think when he does go into mainstream he needs to stay where he is where he will be understood. However as i said this school is on the other side of the city and i don't drive, will have one baby and one toddler and Lewiss sensory problems to deal with ona two bus rush hour busride every day. I just feel so apprehensive that he isn't quite ready to join mainstream full time. his Unit teacher said he only spends around 7 or 8 hours in the unit a week (bearing in in mind we have half days up here on a friday) He gets Speech therapy, music therapy and soft play there, i still think maybe a bit more work integrating and helping him with social aspects are needed so another year there won't harm him. What do you guys think? am i holding him back? I did phone his early years Autism social worker as she knows so much about our history and is excellent but she's off sick untill early december!

Just recently my friend's son was told santa wasn't real (he has Autism) and he was furious that his parents had lied to him, he was distraught. I have also wondered how Lew will feel when/if someone tells him he's not real. He is so excited about it and soon he will be up untill 1am and awake again at 5am. It's quite hard going at Christmas time as i'm sure you guys will know. Lew also believes in the tooth fairy etc and his latest is God although he insists God is a woman!

Yes i agree. I know Lewis is doing so well but the ed Psych is new to the school (reshuffles apparently) and has barely spent any time with him. she kept saying something about places in the units being in high demand, don't i know it, but i won't move my son into Mainstream when it could be detrimental to him. I realise myself the other kids in the unit have far more difficulties than he does but he still has his own difficulties. Socially of coarse and also he is very vulnerable, he'd go with anyone who said they liked something he does, he has no road sense and he has before now wandered out of class and disappeared into the playground. we have also just got him onto an even keel with his lunch phobia.When his stress levels are high he tends to have stomach migraines and i think a move would tip him over the edge. The kids are obviously not tolerating him at breaktimes (mainstream kids that is) and he is on his own a lot. I know he would get a learning assistant but who's to say he'll get maximum hours or they'll know anything about ASD's , i've been there with that particular battle and it took 8 months for the post to be filled for him. I have told her that he is obviously doing well for a reason but she is adamant that i visit the catchment area school without even asking what my reservations were about this school. I had phoned there before Lew even started School and they have only had one boy with Autism there before and he moved on, so they know very little about it, it is too close to home (literally opposit our house) he'd just come home if he felt like it and also there are a high turnover of kids there due to the army houses being nearby, so families are coming and going all the time. For Lewis i don't think that would be helpful. Not to mention the train track running right behind the school, i shudder to think........ Anyway Lewis has his place there for another year after the summer as technically it would then go to the PAG meeting (professional Assesment Group) but i am just really scared. I feel i'm right back at that stomach churning time of visiting language units and special schools and trying to decide where would be best for him, and would he even get a place.....i burst into tears then at one of the visits and i feel very tearful about it now. They do not realise the stress this places on people.

I love the film Oliver!! i just got it on DVd the other day. I also love Carlitos way!! fabby soundtrack!