lisa35

well, went to look at the Designated Specialist Provison at a school ,as we felt, as did all the professionals this is best palce for our son I walked out and cried, the kids are so much lower functioning than our son, there were finger paints in the room, etc, he likes to read the Daily Mail for goodness sakes! Why is there no where for our kids! Hed be so isolated, hed have nothing in common, noone to talk to Also, the kids are much less able academically, The school itself was for want of a better word disgusting, litter all over floor, chewin gum embedded in carpets- I was so shocked I commented on poor state of the building, It was depressing, it smelt, was dirty, walls drawn on,kids were sat in stair wwells, made no effort to get up for us to move- my son wouldnt last two minutes in a school like that The kids in general(not those in the DSP) seemed to have no sense of worth, in fact one walked right thro middle of hubby and I! Ive emailed all proffessionals involved and said our son WILL not be going there And in fact, is getting more support socailly in curent school- the DSP provide an hour a week social awareness- and that involves small group sessions of general chat They do not use outside services- ot, Speech and language,etc, we can access more socially than this school could, just by accessing local support group and autism youth clubs Im disgusted that kids are taught in a system like this, it s a school in inner city, with 98% asian kids- who is advocate for these parents? Noone , they dont know who to fight, and their kids get this sh*tty service, its horrific And worse thing of all- how bad is this-when Isaw the other kids I wanted to cry- in fact when Iw alked out I did, I was the very thing that I hate in others- I judged them for being less able than my child- what does that make me? Intend to fight tooth and nail to keep him where he is onwards and upwards x

FAB! how come all the girls are so pretty and boys so handsome on spectrum!? So so , just like my family, I liked what you said about its all we know, this is normal for us- bit nuts, bit crazy, but my god, we re so much 100% more loving and supportive than majority of my sons friends parents xxx

been told, tehre may be no place, but, the lea camn "make " them have one if its named in statement, we will fight and fight if needed xxxxx

Just wondered peoples experiance of having their kids attend an asd unit attched to mainstream school Our son is 12, not coping in high schoool ,and this is being recommended by everyone involved I know we re lucky that we have the support, and are so scared we re going to make wrong decison He really doesnt want to move, but cant go on as we are, he s currently have majority of lesson s in senco room as hes s o stressed There are only 2 schools in our city with these units, approx 12 places in each, any thoughts appreciated xx

it say s regarding motor skills-significant difficulty with manual dexterity - 2nd percentile on standardised assessment, and some difficulty throwing/catching-16th percentile thanks you clever lot!!

not sure if nayone can or should advice us but thought may help to put my thoughts down Had autism supprt tosee us, son really struggling in mainstream, we find out thurs if lea agree to assess-currently has 11 hrs one toone (not statemented)and struggles without it We spoke about how when she observed him he was making noises.etc, other kids wound up, and basically he is totally ignored in school Seems to be getting "odder" older he gets, we re faced with what do we do A push for one to one all time,hope that he feels better about school, and we all live happy ever after push for school with asd unit-(one is in really bad area, other better)-even if lea agreed-may not be place Do we make our son "fit in" with mainstream- or access asd unit with specialised intervention, and kids that are like him?? He s so low at present-scared that if stays in mainstream will get worse, god,really dont know what to do! Got meeting at scshool on thurs with senco,ed pysch,autism supprt to see what we can do til statement agreeed/or begun, School havent said they cant meet his needs- but even one to one- that desnt help him with socail aspect-even brief social workshops cant be as beneficial as asd specific can they Hes adamant he ll stay where he is (only has one friend) who is beginning to find him hard work too Autism outreach really good-said will support us whatever we decide, I know we dontyet, but want tpo be prepared in case of all eventualities. She also feels that it gets harder for kids as they get older (is 13 next) as kids less tolerant- son has no idea about clothes/ fashion,etc,etc My poor soul, I feel like Im failing him ,he is so unhappy Any one any wise words? or experiance xxxx

hi my son has dx of aspergers- as far as Im concerned he does stim- sometimes he makes noises, when happy he likes to spin/ jump- depends what you call a stim Think truth is there are no fixed boundaries- each child is vastly unique- and none fit in a "box" x

[i]fully aware, possibly for the first time in his life, how his behaviours and reactions impinged on other people. Hi thanks all, think thats what we re currently getting to a stage of, that makes so much sense, I suppose in a way when they re younger you kind of shield them from the effect they have on others But in long term this is not good- we re now being relly"full on" and at times it feels cruel- but he has to know that he he acts the way he is he will have no friends, not be able to go to school ,etc-we ve also had to be tough and say sorry but we will do these stuff with you vbecause he does need to be able to function xxxxx

thanks so much Mumble for your response, It really helps from your perspective, "own experience (and this is something I have as a co-morbid, so more intense) is of very limited words for feelings - I can have a feeling and have no idea how to say what it is - likewise I could be trying to 'read' a feeling in someone else and " This is our son, he cant use the words either "have an emotional vocabulary of happy, sad and angry with nothing in between. Start with those and then branch out to other feelings such as surprised, confused, etc." This too, the "obvious/extreme emotions- he does recognise, its the complex ones he doesnt, and I agree that teaching the emotions independant of everything is use less,eg had a picture of a boy reading a book-he said he was unfappy(head in hands) but he was concentrating, it needs to to be the entire picture/the emotions in context to a situation,etc "I'm just not sure about this - the issue is that for children/adults who do not have such issues, facial expressions are learnt 'naturally' - no one sits down and says, this is a 'frustrated' face, this is a 'contemplative' face (don't ask me what they look like!!!) so in some ways it feels like being punished with extra work simply for who you are, and I wonder how effective such teaching is, because so much of the knowledge is implicit, making it explicit in any meaningful way is very very difficult. If I'm cross but holding it in I will sometimes turn the question on the NT who is pissing me off my quizzing me and ask them to describe the differences between a contemplative and frustrated (or whatever - having difficulty thinking of the words tonight) face in enough detail so that the two could be picked out of hundreds of faces - you see, it's not as easy as it seems simple because it is such a 'natural' process to many." Yes this is damn hard, its made me question as to whther i have aspergers too, because its such a dificult thing to explan, most f us just "know" , or do we?! "It's very very difficult, I think, for someone this is a natural reading to, to comprehend the issues. I get incredibly frustrated, and yes, if there are other triggers as well or the point is pushed, someone saying come on, tell me how you feel, you must know how you feel, everyone knows how they feel, then this will lead to meltdown because I feel a total failure for not being able to do something so 'simple', and yes, I want to be 'normal'." I totally 100% made sure I ddint do this to him xxxx He s 13 in sept, we just got diagnosis 2 weeks ago,(tho known for years) if we wait for him to be ready I feeel damage will be done, he is very isolated frompeer group, hanging in by a thread at school because he doesnt "see" that his behaviuor is not the "norm" Yes Id love he could just be himself ,a nd not "adapt" but reality is not that, he ll become more isolated and lonely,and real sad thing is he just told me he "wants " to be normal So how do I help him "fit in" (I love him as he is-its rest of world thats unaccepting-I love his unniqueness and differences-he is my world) without making him unhappy!?Hard question I know!!!!! xxxx

Just been doing some stuff with son, trying to get him to recognise facial expressions- positive and negative(theres really good ideas on NAS page) and has kiiiccccccccccckkkkkkkkkkkkkkked off, big time, Im sure this is because he finds it so difficult, so any thing like this he creates a fuss, and thinks Ill give up But truth is, we have to do it, noone else can rteach him this stuff, so now, hes downstairs on lap top, talking to me on msn Seems to communicate better like that, and just keeps saying he wants to be normal anyone elses children have meltdowns when you re trying to help them with thses stuff? Hubby wonders if we re tackling it all wrong, but surely this has got to be better than totally getting all situations wrong, noone has the time/ energy to teach him these stuff apart from us And we wont always be here to do everything for him x

survived rest of week, report gone to lea from school. no massive issues last couple of days, await decision restatement next week and school said yep, as who knows what ll happen between now and July-dont think they dare say no to us!!!! thanks all

J got another exclusion Monday, but had good two days, we ve had copy of report school sent to LEA-its impresive, raelly good, but god its hard to see it all in black and white- the stuff about "phyical violence, verbal etc Made us realise just how difficult his behaviuor is for others, yet we just have to manage xxx J told me tonight at one time he had thought about suicide, it seemed like an off the cuff comment, but how bad must our kids feel to be even saying stuf like that x Jost wait for decision now, meetings next thurs, dont really see how thye can refuse, he currently has 8 hours 1 to 1 in classroom support, 2 hrs 1 to 1 in Games, 20 mins daily 1 to 1 in a morning and access to senco room Just wondered whats max they may offer, we really want 1 to 1 every leson! and his sats from year 7 at primary were English-5c,Maths 4b, Science 5c They are now 4a for all, how damaging is all this on my somnns education! It says" no measurable progress-assessments commensurate with KS2 sats results How depressing Lisa

wow,thanks Bid, gave me some insight- at mo my lads is.........lego.................and stop motions.......................he goes onnnnnnnnnnnnnnnnnnnnnnnnnnnand oooooooooooooooooooooooonnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnxxxxxxxxxxxxxxx xxxxx

loving that comment pearl! My son didnt realise it was on, otherwise woul ve never got him to bed, mind you, beats continuos aircraft investigators!!!!??? xxx

just found a letter in sons bag-for end of term trip-to Flamingo land-I just know theyre going to say he cant go becasue has been in behaviuor unit,etc,etc Has been excluded for 2nd time today in two eeks, we re waiting to hear if LEA agree to assess We ve already reluctantly agreed that the German trip to school not a good idea- so if he realises wont be going on day trip he ll be devestated Theres no motivation for him, even if he tries hard at a piece of work ,usually doesnt manage to hand it in/or get it back as he s spending so much time out of lesson/off timetable Have been on phone all night again to Parent partner ship,etc Exhausted, heart broken,school is destroying him, and us, we re ok at home, not perfect, but we manage Waiting to hear from head tomorrow as year head couldnt spek to him this aft- and she wasnt sure hed be exclcuded, but thought was very likely! So i said what we meant to do sit at home tomorow waiting for you to ring when you decide! Can just see that, mother of all meltdowns when poor soul doesnt have a clue whats happening Feeling so so alone, and dont want him ever to go to school again xxx the punishments they implement just escalate situation, like today, off timetable, sat in a class, at the back, whillst the teacher taught his own class Consequently -noone helping him, and h had to trail from lesson to lesson getting the work he shouldve been doing havent got an ounce of energy left x just want to cocoon us awayf rom everything

"put " in in my head!? Lisa son say he emebersthings as little videos quote name='Mumble' date='Apr 28 2008, 08:42 PM' post='210873'] If you've forgotten something - say someone's name you were trying to recall or a word for something, how do you 'find' that name/word again? I was made to feel weird today because I obviously do this 'wrong' (my way works fine, so why should it be wrong? ) and it's left me really unsure. I don't want to say my way yet so I influence you, but both NTs and those somewhere on the spectrum, because I'd be interested to see if there is a difference, what to you do to remember a name or a word?

try scout association website-has guidelines for kids with sen, ours is fab, she s also our gp, it s the one thing that he s successful at,they are so understanding xxxxx

thanks x

www.fragilex.org/html/arousal.htm Today autism outreach described our son as "hyper vigilant" - found this, it describes hos sensory overlaod well, what do you think? Is it "generalisin" any learning disability/ special need under umbrella"fragilex"- Im tired, cant make sense of it at mo Lisaxxx

i dont even speak to my son when hes as bad as that Dont even walk past him!! xx I line up a drink, crisps, tv on, and leave him, at least an hour xxxx Lisa

Hi, justwanted to say ditto, we just had diagnosis(2nd assessment) I feel like I "persuaded"them because I provided so much evidence to cahms-I knew what they wanted to hear to make the diagnosi Then again, I made hubby read everything I wrote- and have constantly said he is like that isnt he?? Cos I feel that I see" things because Ive read so much Thenagain, when cahms said my info helped them so much, my response was after 2 years we wont be sent away again!!! As he s got plder (13 next) the social aspect is so obviuos- its proabaly just we know what underpins his problems now, and didnt really have a good grasp before Infact, his senco said she could not believe he had been diagnosed the first time- professionals agree ,yet I still feel like Ive made them diagnose him So, you r e not aloane We re just fighting for statement-as he is struggling so much with sociial aspect-he doesnt have obsessions as such either All kids are different, this is why they find them so difficult to support xxx Lisa

Hi, my son is hypermobile-(double jointed) I believe this is common in asd-this may be causing the pain? My lad used to have knee/hip painn-now has shoe insoles to help with posture Also, has poor core stability, maybe if your boy is similar this is why he prefers to sit this way-for the balance?? Lisa X

thank you all,thanks Jsmum, I asked for the work- apparently theyre meant to have work when excluded? Idid it to make a point- kinda shot myself in the foot I think! I did challenge the exclusion, and have put in writing- in case it happens again. im not kicking off...not just yet,,,,cos any time now we have big meeting at school,,,and we have diagnosis now,,,only got it last fRi,,,school dont know yet Im chilling now, and decided, tomorrow w ere having a calm evening Thanks so much for support- only you lot really undrstand Thanks you xxxxxxxxxx

my son like this- but been at grandparents all day- no noises,etc, im not sure whether he "knows" not to do it to them ,or tries so hard all day to keep "normal" that they can be themselves with us-if that makes sens? My son is almost 13, constantly wants hugs, demads our attention 100%- even when we re in loo,yet others have said he plays us up-im not convinced Lisa

we re the one thing thats costant, and I let him down, I made him feel bad, just like school does! How bad is that