dinky73

Thanks. The SENCO has emailed to say she will read my letter today and get back to me. I'm all suggesting they do a laminated pen profile of my dd so it is always on a teachers desk to refer to. Lets see what they suggest.

Yes it's an independent mainstream school. I've emailed SENCO, who I have a good relationship with, hopefully they'll take my concerns on board.

My dd is 9 and has AS, Dyspraxia & Sensory Provessing Disorder (sensory seeking). We moved her to a new school last Sept and on the whole she is doing well. There are only 18 in her class which we hoped would help a lot. Generally she does well but the school has high behaviour expectations and I feel she is losing GT for quite minor things. GT was always an issue at her old school and I can see it being an issue here too. The SENCO is very good but I just don't think dd's class teacher really gets her. This week she lost 5 mins GT because she waited for a friend and they therefore were late going to the cloakroom as asked ( the friend asked my dd to wait for her), she lost another 5 for talking in Art, a boy who had been talking to her a lot had been moved but then asked her a direct question and she turned and answered him. The last one makes me very angry, while sitting on the carpet waiting to join GT on Fri afternoon two pupils were laughing, dd said she was sitting with her eyes closed so she opened them and asked why they were laughing. They didn't answer & stopped laughing, the teacher asks dd what's going on, she says I was asking why they were laughing and teacher tells dd that's she is being silly and her behaviour is "atrocious". She takes another 5 mins of GT away. I don't think talking was allowed on the carpet but the others didn't lose it for laughing & the use of atrocious IMO is extreme. I just feel what's she is doing is using punishment to constantly control anything that dd does that not allowed. It's all minor stuff but dd was so upset ( not at school but when she told us). I am writing a letter to SENCO today to say I'm not happy with the GT system. It's not attainable for her and it's based on punishment rather than praise & encouragement. Any suggestions of a good system to replace it with? Not sure if they even would change it to suit her. She does so well, very bright and didn't lose any GT last week (wasn't praised or rewarded for it though)! I don't want GT to become such an issue again. She's promised she won't lose anymore and that just makes me sad because inevitably something will happen in the week and she will be upset. Where is the motivation if you lose 5 min on a Monday morning, then get punished on Fri afternoon? Hate that system. I want to write a good letter about how it's not good for ASD kids and the teacher isn't using it fairly. Thanks Dinks

Thanks for all the advice. We actually have that worry book so she took it to bed and had a better night. She slept with her nightlight on (we usually turn it off when we go bed). We had tried to reassure her and talk about the fears but I think they just become too big in her mind. We've explained about smoke alarms etc but it just seems to "remind" her of her fears. Hopefully she will improve but we will work on ways to alleviate her anxieties in the meantime. She has a nightlight, a worry stone and books aimed at not letting your worries take over. We'll soldier on. Thanks for all the good advice Dinks X

Thanks. Yes maybe the radio might help. I'm not keen on TV's in kids rooms but the radio might work, or her ipod on a speaker. She can listen to audio books then if she likes. It's so hard as she has been such a good contented sleeper until now. We have nights when she seems much better and she settles quickly and then hellish nights after that. She just can't stop feeling afraid. I might buy a relaxation thing to put on her ipod, that might help. thanks for the suggestions.

Hi all I'm in need of some advice regarding my 9 year old dd with AS. We visited a place called Hazard Alley in April, this is a place where they recreate things like road crossings, petrol stations, houses etc and talk about everyday dangers, how to cross to road, how to be safe around railways etc. We went with out local Dyspraxia support group and there were children as young a 7 there. She had a good time and seemed fine with it all, that was until we got to bedtime! We basically had 3 nights of hell, she was hysterical, sobbing, even vomited once - all due to her being "scared of hazard alley". I think she was scared by the talk of fire and of other bits and bobs too. It didn't help that we were staying with her Aunt at the time and she wasn't in her own bed. I thought it would improve when we got home but it didn't really. We have spoken at length about all her fears, I've tried to be understanding and have reassured her so many times but at bedtime she is still in tears over it all. Last night she was still awake at 10pm and called me in about 5 times over the next hour. She was in tears, said she couldn't sleep because she just thinks about hazard alley, she refused to turn the light off, got out of bed and begged me to stay with her. In the end she read her book for about 40 mins and then fell asleep with the night light on. She was very tired this morning and I am dreading the same happening night after night. How can I help her get over this? She gets things in her head and in her words "just wants to forget it ever happend. I want to erase it from my brain". She seems so irrational about it all, I can't reassure her or comfort her. I really want to help her, its starting to affect her sleep and night time routine. I can see her mood drop and her anxiety rise as bedtime gets closer. She has always been a great sleeper, always been in her own room and has never ever been in our bed once. It seems like she is scared of everything now, being alone, being in the dark, scared or fire, scared of dangers in the home. It was meant to be informative but it has just made her super scared of all potential dangers in life. This is life though and if this is how she reacts to a few little dangers then I dread to think how she'll cope with REAL LIFE. I really feel for her and want to help but don't know where to start. Thanks dinks

I put her in trousers today but I was called in after school to be told that dd had been lifting other girls skirts today in the playground at morning play. She was told off about this and I think she said some children were encouraging her so the class were spoken to as a whole about not encouraging other children to misbehave (no names mentioned) but at lunch play she went out and did the same thing again and had to miss some play time. The teacher said 3 different adults told her to stop doing this today but she kept on. When we asked her why she just said I can't help it and that the other kids were telling her to, the teacher interrupted her then to say the whole class was spoken to about that and then at next play she went out and did it again. We have just had a chat and she said it started because a group of girls started saying "come and get my undies" and it started a game of chase them and lift their skirts. All the children were spoken to as a class and asked not to encourage children to misbehave but she then went out and did it again without being encouraged which is what annoyed the teachers i think. I just asked her why she went and did it again and she said because she had the thoughts of "come and get my undies" "come and get my undies" going around her head and it just made her want to do it. She said she couldn't help it. She also said when children ask her to do things she doesn't feel like she can just say "No I won't do that". I am going to write a letter to the teachers as they asked me to chat to her tonight and see what she said. I also spoke to her OT who said she should start having her weighted lap blanket on her lap on the carpet and a fiddly again to try and calm her. Not sure what else I can do. I have been nice and calm about it all. Explained as best I could about the importance of listening and talking to me about things. She just keeps saying she does try and she just can't help it.

That article was very interesting, thanks. I can understand how it would fit for an autistic child with poor language but my daughter spoke fluent sentences from 16 months and her language has always been her strongest thing. She talks very fluently in quite a grown up way so her repeating words to learn then probably doesn't fit for her. I think its calling out inappropriate things that is more common for her to do although sometimes she does just grasp onto a word or phrase someone has said and just keep repeating it. I just want to help her, particularly with the innappropriate behaviour. I was thinking of putting up something visual to help her as talking doesn't seem to help. No idea how to go about it though. Thanks dinks x

Thanks for your reply. Sounds like you have had a tough time too, like my daughter. My DD has seen an OT for sensory integration sessions since she was 4 and saw a paed twice last year for her AS diagnosis but since then nothing. We are due to go to Great Ormond Street hos[ital on the 21st May for an assessment at their high functioning autism clinic and hope the findings of this will help us all understand her more. The teachers don't feel she is struggling that much, there is the odd incident of calling out or inappropriate behaviour but not enough in their eyes to warrant one to one help. They have no special SEN classes at her school. She does have an IEP and had been on school action plus since starting school but has received no extra help. She has started attending a small social skills group once a fortnight which is run by the INCO. I just need to help her more at home too, maybe using books or stories to emphasise my point. I would love to hear of methods people have used. The idea of visual prompts is appealing but how would I go about using visual aids to stop inappropriate behaviour. Print out pictures of things to put on her wall so she knows what is inappropriate? Or do you do the opposite and put pictures of the appropriate things. I just feel I need some help here. I am happy to sit down and work with her on this btu I don't know where to start or what to use. dinks x

Hi Firstly I want to say hello and introduce myself, I am married and have a daughter who is 7 years old. She was diagnosed with Sensory Processing Disorder aged 4 and since then Dyspraxia, Hypermobility and Aspergers (diagnosed a year ago). She has been doing really well in mainstream school, a few wobbles in Year 1 with the change at the start of term but apart from that fine and managable. She has been having a great Year 2 but since Feb she has changed a lot in school. The teachers started by telling me she was much more "obvious" in class, lots of calling out when she shouldn't and sometimes just annoyingly repeating random words over and over. Consequently she loses golden time most days and recently became very upset about this one night at home. There has also been a few cases of inappropriate behaviour recently. At her art club she was leaning across the table and kept saying "who can see my white knickers", at school she asked a visiting teacher, who was a complete stranger, seating near her "if she wanted to see her knickers". Today I collected her from school and the teacher said the knicker obsession is continuing and today she was lifting her skirt in the playground and showing her knickers and trying to get other children to do it too. After art club today her teacher said she had to tell her off 3 or 4 times as she just found it hard to pay attention and stay on task and kept rushing her work, finishing quickly and saying she had nothing to do and generally being loud. At home she has become very argumentative over the tiniest thing. I think she is very tired but will never admit it and still seems hyper even though I know she is exhausted. She won't face up to things she has done if I ask her about them, she just walks away and won't talk about anything that has happened in the day. She said today she knows she shouldn't show her knickers but sometimes she can't help it. I just want to help her. Anyone have any experience of similar behaviours? I was thinking there might be some good books to sit down and share with her. We are seeing the national centre centre for high functioning autism at great ormond street on may 21st for a thorough assessment and I hope that will help with understanding her needs better. I am starting to feel like I can't do this on my own and I need some help (and so does she). School are calling in the Advisory Service but have warned me they are unreliable. She is such a sweet girl at times but I finding her behaviour hard at the moment. Very challenging, argumentative, doesn't listen, asks a question then ignores the response, sits and listens to same song over and over and over every morning. Sorry for the long rant. I hope someone can help. I think I may be on here more regularly as I think I need the support. Last week she was so upset one bedtime, said she was different because she was naughty and keeps losing golden time, says she tries to stop but can't. She went to say the other girls never lose golden time and they are funny and people like their games better. She kept asking me what i was like as a child and did I "behave" like her. I don't think she can control herself at times and I find that very worrying. I can't help but think being in a class of 30 isn't helping her. Thanks dinks x

Thanks for the link. It is very interesting as I had never considered DLA before. She is my only child so I don't have to struggle coping with any other children. I suppose she does fit some of the criteria, as in she is often unaware of danger around her (i.e. she will walk into the road to avoid a dog on the pavement). She does ok with all her personal care although if I didn't tell her she wouldn't think of brushing her teeth or combing her hair, but then she is only 6! She can dress herself (sometimes is back to front :-)). She is toilet trained and doesn't have physical pain. Occasionally she has leg/hip pain due to hypermobility but again its intermittent and doesn't really cause her too many issues. I suppose because she is all we are used too i don't see her as needing much more help than others but maybe I am wrong. I looked into Camhs on the internet and it looks interesting, I hadn't realised it was just for mental health. I do think she suffers with anxiety at times and often gets stressed/frustrated with life but don't know whether the Paed would think it warrants a referral to Camhs. I think I will write him a letter expalining my concerns about not having a diagnosis written down and also that I feel she may benefit from some further testing or help to do with her social emotional well being. Thanks for all your help. dinks

Hi Thanks for the replies, I am finding this all a bit overwhelming actually. My dd actually gets on ok at school (most of the time) and is flying academically. I feel she really needs help psychologically, she struggles to control her reactions and ressponses, doesn't always do well in social situations and know social rules. She gets very angry and frustrated and this is getting worse. I don't think we would qualify for DLA as I don't think her needs are that extreme, she is not physically disabled, I don't need help caring for her, she can do things for herself so I am not too sure how DLA works. Can anyone tell me more about Cahms? I have heard it mentioned a lot, is it something the Paed should have offered me? As he has diagnosed her himself will he not say there is no point in cahms? I think she needs help with understanding her own reactions and behaviour and how it affects others. We have had OT help for her physical problems but no help for her other issues such as behaviour (which is actually ok most of the time and managable apart from new things and change which affect it). She is an only child so we can give her all the time and attention she needs which helps but I feel I need to understand her more and she needs to understand herself better. I don't really know what to do next? Should I just take the diagnosis and shut up or should I push for more help and understanding. I am dreading school starting as she had a terrible start to year 1 and they almost called in an ed psych last year but then she settled and everything was ok. Thanks

Hi Our dd (6 1/2) was diagnosed with a sensory disorder and dyspraxia aged 4. Recently in March this year we had a Paed appt at our local childrens centre (after problems settling in Y1). I had heard mixed reports about this paed but he was ok with us and agreed that she fitted a lot of the criteria for aspergers. We went back in June for a follow up and just went over the same old stuff. I again asked for a report or diagnosis letter and he said he would do one and send to me and the sch (he hasn't). My issue is I am not happy with the diagnostic process. He relied totally on info from myself and the sch, didn't really do any tests on her as such, the only questionnaires we completed were Connors ones that are primarily used for ADHD diagnosis. On the 2nd visit he did show me the connors and said she scored very high for ADHD and Hyperactivity. We have seen an OT at the smae centre for a couple of years but have never seen anyone else, she has never seen an Ed Psych or a SALT. I have since spoken to numerous people who have said the paed is useless and all he does is spout back info you have told him. I suspect he is close to retirement and seems to want an easy life. He is also known to never do any kind of reports and hence we have nothing in writing (but then he didn't really do any tests so not sure what he would write). I am not disagreeing with the diagnosis as I have always believed she has AS but I am not happy that it has been thorough enough. I was at a Dyspraxia support group last night and spoke to one lady who said she asked her paed for a referral to Great Ormond Street to see some experts in the field and get a proper thorough diagnosis and assessment and he agreed and she got loads of help and a fantastic assesment and report from them which has really helped school. I was so tempted to go private but I know the issues that come with that and people have got nowhere with a private diagnosis. I feel I want to write a letter to our paed explaining (politely) that I agree with the AS diagnosis but everything i read about the diagnostic process says its more lengthy and multi disciplinary and should be done by someone who has asd's as a speciality. Is it OK to do that? what are my chances of her being referred to a specialist? At present she has Sensory Integration Disorder, Motor Dyspraxia, Asperger's, Hypermobility and possible ADHD. I also have nothing on paper from anybody, apart from a private report we had done for her sensory issues when she was 3, (this helped us get her OT appt's on the NHS). Her OT treatment is great but we have never had anything in writing. Is this right that I have no reports, no assessments, no formal diagnosis letters. Shcool have recieved nothing except info from me. I feel very strongly that I want her assessed properly as she has so many conditions and possible conditions. I would be grateful to hear of other peoples experiences. Thanks and sorry for the long post. dinks

Thanks for the reply. Hopefully I won't need to go down the private route but I will if necessary. My questionnaires came through yesterday and they have only sent a Conners questionnaire for me and for school. I hoped there would be more so I could put down all my concerns but it looks like they are concentrating on ADHD due to what the OT suggested. I will have to send in all my concerns on a seperate sheet of paper and hope they take that into consideration too. dinks

I would be interested to know if they have to accept a private diagnosis by law. I would dearly love to get one done but have been put off by her OT. My LEA is Hertfordshire, where are you based? Out of interest how much does is cost to get a private diagnosis? How would I even go about finding someone to assess her. As you say it would need to be someone very experienced to counteract anything the local LEA say against it. Sometimes I don't even know what I am fighting for as even with a diagnosis I am not sure they would change much at school. She is doing great academically and apart from odd incidents things have calmed down a lot. I doubt I would need to fight for extra help for her, she certainly doesn't need it academically. I just want what is best for her and I am told things will get worse for her in school as she gets older and so I want everything in place in case I need it to fight for extra help down the line or even get her into a different school if necessary. I know from the sceretary at the children's centre that they have been flooded with loads of referrals so I doubt they have the time or money to go through each one properly. I don't want to be one of the ones they see and dismiss. In a way I wish I had got the letter after xmas as now I am just worrying about the whole thing. dinks x