darky

i have to say in my past experience of senco's its very hard to have a "partnership" when its all one way. senco's can advise and should do, but should always take the views of the parents and child into consideration. my little girls old senco told me "i will take the advice of the educational pyschologist" when i cornered her once for putting my little girl through a band concert, even when she knew my girl would find it stressfull! my views were not taken into account then and certainly not the views of my little girl who was distressed and couldnt speak for herself! that momment then was the beginning of a downward spiral for me. it was obvious the senco was not going to take any of our views into consideration, and the flattery about my child was no longer going to get round me! i was glad in a way, it enabled me to see just what was and wasnt being done, i thought everything was ok, telling me my daughter is lovely and wonderful etc etc after a while i realised this was just flannel and a poor attempt to keep me onside. it enabled me to take a step back and just think about what actualy was being done for my child, a big fat resounding zero. to be honest, in the end it seemed to become more of i pulled one way and the senco pulled another, everything i said she started to undermine and vice versa. i lost trust in the school, especialy when i discovered the senco had in fact lied and delieberatley kept information from me. i couldnt send my girl to a school like that so i pulled her out an a fresh start at a new school has been wonderful. my boys are still at that school, and i have a son with aspergers whos needs are not AS demanding as my daughters, its now gone to the govenors to sort out because i cannot and will not battle with the senco anymore, shes a minion who needs to be retired, (i think my good pal helen will back me there!) i would say that if you have started to have problems, resolve them asap. let the senco know where she stands etc. i fannied around for far to long and was bought for ages because i didnt want to upset anyone. you have rights too, as a proffessional she does have a right to disagree with you but she must also listen to you and give good constructive reasons as to why she does not agree instead of forcing her beliefs! goodluck to you, people say buying a house is the most stressful time in a persons life, well to all those people i guess they never had a child with sen!

hi there, how old is your son? im just wondering, have you ever used social stories? i have found these to be a great way of getting a point across. i have used them mainly for phobias but i have heard they are great for feelings also. i have found this site http://www.polyxo.com/socialstories/ it does not give an example there about empathy but it does give sample stories about feelings so maybe you could write your own? sorry if you have already tried this. just a thought!

yes my daughter does this too, she is 6. ive been told same as someone else here, that if you try and stop that then it might be replaced with a worse behavior. i know its hard though as sometimes it makes me feel quite sick when i see what shes nibbled,sucked,chewed on! not looking forward to winter, she likes to lick the frost from cars etc. still she has improved a little, she used to eat her own doo.

it does vary from area to area. i have 2 children who have both gone through a full asperger assessment here, in dorset. first, we had to fill in behaviour and socialisation questionares, the school had to fill them in too.that is scored. we then had to see a consultant where extensive history was taken. they got referred to occupational therapy and physiotherapy for assessments of motor skills and perception. then it was speech and language therapist who look for "higher order language kills" difficulties, literal interpretation, understanding sarcasm and receptive language skills. that was complicated! and finaly, the educational psycologist does a full assessement of them in school. eventualy, when all the results come in (after about a year) the whole "asperger team" get together and discuss diagnosis, and then with us parents. its a very long road, only trouble was, with our daughter, who is 6 now, they decided after all the assessments, it was too difficult to assess her properly, so they have come up with an interim diagnosis until shes old enough to assess her properly at about 8 yrs old!

hi there, i just wondered if there was anyone here who knows about fragile x and how and where a person can get tested for it? can it be done private? how much does it cost? and what about nhs? please, any information would be gratefully recieved.

the system failed you because of politics. its a crying shame. i know exactly how hard you have worked for this. i have the utmost respect for you helen and your views. i know you dont fight alone for your son, but for every child in this miserable system. you should hold your head high, be proud of yourself and take what you have learned and turn it positive. i am with you every step of the way. like you said hun "tiny beavers chipping away" <'> <'> loads of hugs me xx

to phasmid, you have been there for me when i needed you, so sorry to hear you are having a tough time. thinking of you and sending you <'> <'>

hi there, i hope you dont mind but your childs dx is very similar to mine. my daughters adhd is really severe and is sucessfully treated on concerta(slow release ritalin) sounds like your child may just have ADD thats attention defict disorder, thats without the hyperactivity. it is true that ritalin can bring more to the surface the asd, as the concentration improves the asd difficulties become clearer, it dont mean the asd difficulties have been made worse, just more noticable. this is just what we found! we have decided that because our daughter suffers from inettention, hyperactivity and impulsivity this in itself was a major problem. before meds she was just a mess, she shouted out almost involuntry, she rolled around on the floor and could hardley stand even.i lost count of the times i had to pull her away from a plug socket to stop her inserting keys, she was on the want the whole time and if i turned my back on her she would leap off the stairs, or eat a chube of toothpaste or rip up paper work, and destroy anything she could get her hands on. at school she was disruptive and agressive and wasnt capable of learning. she spent most of her time out the classroom due to her disrupting the whole class. since meds shes able to sit and learn, she has come on leaps and bounds. in fact she had learnt more in the first 2 weeks of meds than she had done in the previous 8 months without them. so we feel we dont really have a choice but to medicate her. i will say, that ritalin can make anxiety worse, a lot worse. m daughter developed a huge bug phobia and a dislike of loud noises whilst on it. things that bothered her before like balloons, i guess where her mind was racing at a million miles an hour, she could ignore to a certain extent, but when on meds her mind slowed right down she was then able to focus on the anxiety much more. probably the same with bugs, she may have not noticed them much before, but was then able to focus on them around her. thinking about it logicaly it must have felt quite daunting for her. 18 months now on meds, the phobias have improved. we have done social stories and we use visual timetables to help get through to her and its been a great help. its so much easier to help her with her difficulties because on meds its easier to see what they are and work to help her, before she was quite unreachable. its very difficult when you have child that cannot be pigeon holed, our consultant described her as "trying to fit a square peg in a round hole" shes hypermobile and very badley un-co-ordinated, which co-incidently acualy improves on meds! so a variety of difficulties. the only thing you can do is forget the diagnosis to a certain extent and look at the difficulties you are faced with and do the help thats required with each symptom. my advice would be to read up on adhd and the medications, there is a very good website similar to this one with loads of parents who have adhd/asd children. im not sure if im allowed to post it here so if you want it pm me and i will give it to you. just beause a child does not have hyperactivity it dont mean the meds cant help, thats a myth. if a child does suffer attention deficit without hyperactivity then meds can really help with acedemic learning. lack of concentration is disabling. imagine being in a room where everything you are hearing is all at the same noise level, the teacher trying to give intructions, the birds singing outside, the clock ticking, or maybe just someone muttering behind you, thats what its like and thats why many children with ADD just switch off and apear dreamy or apear lazy. truthfully i know for a fact that having an adhd child is not all about bad behaviour and hyperactivity. its no different to having just an asd child. misunderstandings by people can lead to low self esteem of the child, being labled "lazy" or "a dreamer" or people saying "hes not working to his potential" these are all common for the ADD child. anyways enough of the waffle! i just wanted to explain that i know its difficult when you have multiple dx and i thought that hopefuly my input as a parent of a similar child might be useful. lisa xxx

i agree, my daughter was dx at the age of 6 and i feel that was far too late. even now i cant pin down a firm dx for my child such as aspergers as its deemed she is too young to test for higher order language skills. hence the umbrellar dx of pdd-nos. she was showing signs for as long as i can rememeber, pica was looked into when she was 3-4 and have just found out that pica is actualy a symptom of autism, considering that i was complaining about behaviour difficulties from a very young age, im very surprised everything i said was dismissed until she went to school. my son now almost 9 yrs old is looking like being dx with aspergers, but because he is passive, the symptoms have been so much more subtle in the eyes of the education system. again i have had worries about him for some considerable time.

hi guys, sorry i havnt been here a while but i wanted to give you an update and thanks to all that helped me when i needed it. i decided after a long fight with my daughters school that some things even a statement cant fix, so i decided to pull her out of her school and sent her too one i was sure could meet her needs. she has been at her new school for 2 weeks now and is doing well. her school have been very quick to identify her needs and have been working now to help her. my daughter has settled well and for the first time since i dont know when, has started to interact with other children and comes out of school happy and chatty. i feel sure this school is able to meet her needs and i can now send my daughter to school without worry and to know they are doing the best they can for her, and best of all UNDERSTAND HER. i know we have had some quick results with this school, and i understand that things can change with these type of conditions. but first impressions are good, i can only speak positivly and look forward to the future now. im happy i have made the right decision for my child. thanks again for all your help.

hi guys i just wanted to let you all know that i know helen, i know the effort she has put into this and i know that despite all this has helped me and many other people imensly. helen, i really hope that the results go your way, but you know that in the end you have done everything reasonably practicle for your son. you should be proud. what you have done for your son goes beyond any parental responsability. you are an inspiration. you have taught me to fight and carry on even when i have felt knackerd and worthless as a parent. you know that i stand by you now and any help i can give you in the future i am here for you. lets suck it to em my dear!! to the rottweiler love the pitbull hehehehe! good on you girly you give it your best shot!

hi there ((((hugs)))) <'> to you. your daughter sounds exactly like my daughter was. A NIGHTMARE! my daughter has been diagnosed with adhd and pervasive development disorder not otherwise described. she is on medication for her attention defict and that has helped so much. sometimes the "autism" behaviour is very difficult to live with too but things are much better than they were before! good luck with your appointment and take no notice of people who doubt her difficulties, they dont have to live with her.!

it took about 18 months all in all. from referal to dx, there was LOADS of asessments.

well, what a result! got fed up with bashing my head up against the wall with the school, so i picked the one person who i can talk to up there, who is the SEN TA, who is also the sen govenor. i had recorded some videos on my phone of my youngest 2 "at their best" i showed her and she was shocked and amazed, she said "and you have this everyday?" i said yes and she said "im surprised you are sane" i said i am but close to loosing it sometimes! well she listened, wrote stuff down, is giving the kids all handwriting pens with hand huggers to make things easier, she assures me shes going to make sure i am kept informed and welcomed me in to chat anytime. the kids are going to have new school home records with acurate information about the day with their provision written in. but the most important thing for me was finaly i felt like i was being listened too, what a major difference that makes. so my advice, if you are having troubles at school, get out your mobile, record some things and show them just why you are concerned! its a shame we have to resort to these things to get our points across, but i think it was well worth it to show them that im not an insane over protective mother. i just want whats best for my kids and to be listened too!

i would be very interested how you can teach someone with no co-ordination how to ride a bike!! please do post it! also my son has difficulty with left right discrimination.

is it common for aspie children to be very clumsy? my son will be 9 in november and hes incredibly clumsy. today he fell whilst getting in the bath and wacked his head, i cant seem to leave him alone as he trips and falls about all over the place! his motor skills have been tested and were found to be incredibly low just 1% but i dunno he seems to get worse! just when will he be able to stand on his feet??

hi there, i hope you dont mind my input. have you heard of social stories? i have found them to be a great tool for my daughter. i use them for fears and enforcing rules and they really do work. my daughter had a terrible fear of balloons. we did a social story and aprox 2 weeks later she was playing with them and wanting them in her room. you can find out about them if you just type "social stories" in the seach bar on google or whatever. a ladt called carol grey came up with them and have really been a godsend to me.

hi sylv, i have found the same. both my younger 2 have to know where, when and why all the time. if someone is late i get tantrums gallore and its like they loose interest when that person finaly turns up. also have found though, things you expect them to enjoy they just dont. i thought the repeated questioning was excitement but have since been corrected by the consultant who informs me thats anxiety. so in that case both my kids are really anxious kids, repeating over and over. i then wonder why when i expect them to enjoy something, they really dont. but thinking of it logicaly, if they are anxious then its not surprising really. i now know that i dont expect my kids to like something just because they are kids, sad fact but true. it can be really upsetting at times. i know how you feel <'>

i been watching bb and i think eugine is aspy and kinger whatever her name is, seems like and adder to me i dont know why, but i am able to see adhd and aspie in most people, i must stop anylising!! and by the way i want makosi to win, maxwel and saskia out i cant stand them any longer!!

ive answered no because my children are in mainstream with little or no help at all because "acedemicaly" they are deemed satisfactory!

my son and daughter suffer bad with anxiety. my son asks repeated questions, if he knows he is doing something he repeats and repeats questions over and over. ive got an egg timer that helps, he just really needs to know exactly what hes doing ever min of every day. at school he holds it all in, he smiles, like helenl53 son. so hes coping, is he hell he gets home and lets it all out. my daughter is more open that that, she will ask over and over at school as well as home and have been informed that when she has to be picked up early she will start from 8.40am until shes picked up! she has phobias and screams a lot. flys are bad at this time of year, now thats something she does hold in at school as "screaming is not alowed in school" so again when she comes home BOOM!! visual timetables do help a little, but i find it incredibly hard to cope with being so ridged as im about as disorganised as they come! (poss un dx add)

thanks guys. my boy is starting to verbalise how he feels. just today he asked if i could take him back to school during lunchtime so he wouldnt have to walk back into the classroom. he said he hates people looking at him. the other day he said people stared at him because he used different scissors, now a couple of months ago he said he didnt need his pencil gripper, my guess is he just didnt want to stand out. today he said "you are the best mummy in the word" and when i asked why, he said "because you sort things out for me at school" awwwwwwwww!! my heart melts!

zemanski, i was wondering, could i possibly use your post or would you be prepared to write something explaining about your child being passive at school? anyone else whos had these difficulties i really need the help. for my son is suffering at school and we are getting ignored even though the outside specialists agree he does have difficulties. i was gobsmacked when i read the thread "the passive child pretending to be normal" it was so very much my son and now even my daughter has some tendancies she hides from school. im desperatly worried about the long term effects this will have on them both. if i could use some of your posts that would be an amazing help. i am having a meeting with the schools headteacher and senco soon, the more i can show them the more it will help to prove my case. thankyou in advance.

all my kids love dr who. i was a fan of it myself when i was little, but tom baker comming through that tunnel with the spooky music absolutley terrified me!

wow, just reading this post, wow. my son now 8, used to have terrible colds, hes had pnuemonia 3 times and been in hospital more times than i can count for wheezing. when he gets a cold its always really bad with one following another and another. if he gets a sickness bug for others 24 hours for him about a week! i wonder if it is as related? but anyway, once when my son needed iv anti biotics he had to be restrained with him kicking and screaming "help they are killing me" on top of this, one nurse tried to ive him calpol he said he didnt want it, she forced it down into his mouth threatening him with the other way of taking medication (up his bottom) and with that he spat the entire lot out right in her face. so i sympathise with you, but if its any consolation he has been ok for about the past 2 yrs, with colds and viruses becomming few and far between and they have never found a cause, they have just said hes unlucky!