llisa32

Hi TMF, thanks very much for the response - I really appreciate the shared experience - it does help <'> Todays diary entry's from the teacher got me fuming again.. I wrote a note in the diary asking if homework could be put into J's bag so that it comes home - she wrote a note saying 'yes, when I am around..which is just tuesday and thursdays! She then wrote a note saying that he got 3 out of 12 and 4 out of 12 for some tables tests this morning and that he has these everyweek and that 'j knows this' And she wants me to do what exactly?? little point J 'knowing' if he keeps the info to himself! - and it;s not written down anywhere! Have chased Ed Psch and she's now doing a home visit just before xmas...infact...the day before ADOS test! - gonna be a busy week that week!

Thanks all for the suggestions and thoughts <'> Lucus and Mumble...on the Learning objectives point....J did ask me why he had to do the diary writing last week because in his opinion it;s not 'learning' - I said most likely for the writing practice. He then said 'well I should be writing it in my 'handwriting practice book at school then!'. I totally see where his opinions are based, and I don't think the teacher is explaining what she requires from him properly at all - I kinda resent feeling like I'm having to do her job rather than just 'help' J with homework. Tonights homework as usual was a joke...teacher had written in his home/school diary 'Spellings, reading and 7x tables' But....no spelling list in bag and no reading book in bag!...Don;t know how many times I've asked if he has homework they need to make sure it's in the bag otherwise it never makes it home - let alone refuse to do it! Bard, thanks for all the suggestions , will look at some of those with J and the LSU teacher I've chased up Ed Psych appt today but no ones called me back yet

Hi Paula <'> really sorry you're feeling so low, and the GP's surgery is not doing their job properly. Couple of suggestions: 1. Does your GP do phone appointments if you can't get back to the surgery - at least then you can explain how u r currently feeling over the phone and ask they urgently speed up the referral. 2. Here's a link to 'MIND' factfiles http://www.mind.org.uk/Information/Factsheets/ if you use this link you should find a factsheet on Anxiety which may have some useful info in - they also run a confedential phoneline 9.15 - 5.15 mon - fri Hope you get some help and support soon Take it easy on yourself <'>

And I was very pleased it was me that got the 'pat down' too! ... Mumble had told me in no uncertain terms what she was gonna do to the pesky customs peeps if they tried to check for her choccy stash!! Phew!

Hope it goes really well this week for all of you <'>

Hi Bard, Thanks for response...he's finding recalling what he did and then writing it down difficult re the diary, and comprehension he's not getting on with at all. Diary writing he doesn't see the point of cos its not 'learning' and comprehension he doesn't understand why he has to answer in a full sentance rather than the direct answer...ie - Question...What did the dog find in the dump? Expected Answer - The dog found some old bones and a mouldy fish in the dump J's answer - Bones and Fish he really does not understand what he's doing wrong in this instance...in his mind he's been asked a q and he's answered it! I'm not sure re the pencil grip anymore as he's got that grumpy about writing per se that he won't even discuss what makes it hard - he'll only say his writings bad, it's difficult to write neatly. When the teachers had a word with me which is weekly at moment to say she's not happy with the amount he's produced in class...we've done it at home with me getting him to verbally give answers, then me writing them down. He will not entertain the writing himself at home at all at the moment They've been using the whiteboard in his lsu lesson, but it's not been rolled out in general class work/english lessons. Just seen your edited post....we are getting a little short on patience with the form teacher cos to be honest she's only got 12 kids in the class, and all they seem to do in english lessons is diary writing, or work straight from a text book or blackboard (she's now having to copy out anything from the blackboard for him on advice from senco and it;s in his IEP)

Hi, all ideas/comments welcome please and I'll try not to ramble! J has always struggled with writing, he hates doing it and is very concious that it;s not as tidy as his peers He's really been struggling with 'diary writing' at school, and all forms of expressive writing and comprehension and has over the last couple of months either refused to do it at school or home, or done very little under duress. He gets really cross and frustrated about it. We've had several meetings with the school and senco and they have sortof tried to help...but we're kinda getting stuck now on the 'defination' of 'trying'. We're waiting for an Ed Psch to go into the school and assess J's needs, and in the meantime we have said to him he needs to at least 'try' and so some english work. However....J's dad is worried that j will not really try...and will just say'but i have tried and only done 2 lines' when if he had 'really' tried he might have managed 5. I don't especially agree with J's dad although I do agree it's difficult to tell what to do for the best whilst we wait for all these reviews etc. Removing tv and xbox etc doesn't make him do the work, and he just gets really angry and cross. He keeps asking me when is the lady who's going to look at his school work coming to school...so he's obs worried about it and whats some help - but if i'm honest I really don't know what to do now. His form teachers getting quite petty about it...telling me 'well other children write at least a paragraph or 2..and j's only written 2 sentances it's not enough'...but he will not do it at home . Home is home and school is school - quite firmly in J's mind. So what do/can I do in the meantimre whilst we wait for appts/reviews etc?? - anything, or just ride it out?

You know I wouldn't always side with Mumble...particularly as she 'forced' me to give up any sharing rights I once had BUT......I have to get up really really early in the morning and now all I have in my brain is 'that' song...and sad as it is to admit. ..thoughts of what u might be seeing!! (...... So.....I stick my vote with Mumble and say her 'suggestion' that you find a seat behind a pillar is a fantastic one. I will be going to bed very shortly as a very jealous and whirring brain Llisa

Thats really great Meggzie - well done!! It must have been pretty tiring for you ass well as your mum - but so worth it! <'> Let us know how you're doing when you've got your glasses at home Really glad you enjoyed the trip and found some lenses that will help you <'>

Hiya - great to see all the positives!! Re the glasses and 'the conference'...I think you should take them and wear them.. yes...some peeps won't be able to see YOUR eyes, and it 'might' make them uncomfy if they are that way inclined ...but, YOU are much more confident and comfy speaking and 'mingling' with them on. So my inclination is that you should go with what works for you this time round...you know Ians working on a lighter pair for you which may assist with others seeing your eyes...but I think it;'s more important that people hear you speak and interact...as oppsed to seeing yr eyes. You can always say 'sorry you can't see my eyes, hope that doesn't make you uncomfy' I think about time you put your self first with your needs and see the difference in that sort of situation <'>

Hi, Apologies I've not been posting much lately...things all pretty hectic round here. My brains in a fuddle and I could do with some help in getting my thoughts in order please... I seem to suddenly have an abundance of either upcoming appts or appts in the post...what I'm trying to get my head a round is at what point I might finally get a firm diagnosis? I spoke to the Psychiatrist about 6 weeks ago and she said she'd set up appts for an Ed Psch review and a SALT review...those appts I'm still waiting for. In the meantime I've now got appts for a DISCO and an ADOS...both were sent to me 3 weeks ago and sposed to be this month - they've both been re-scheduled for next month due to the psch they were set up with not having all the relevant training to conduct those particular assessments. So now got a diff consultant doing the disco and ados in Dec, but currently still not heard anything about an ed psch or salt appt. Do I/J need to have had appts with all these people before anyone comes to a conclusion? I know that I only spoke to our GP in April this year...but given all current probls at school it's really paining me all this 'waiting around' Any words of wisdom appreciated please Thanks <'>

Thats fantastic news!!! - Huge congrat's to both of you!! Wish you both loads of happiness for the future

And just to add....they are not implying that they will actually 'stand on their heads' whilst doing whatever they are referring to....pearl for example will not be eating jaffa cakes whilt standing on her head - if she does we won't hear from her from a long while! ......severe coughing fit I would think! Standing on your head is something which is considered very difficult to most people Therefore if someone says 'I can quote french verbs backwards whilst standing on my head'....what they actually mean is...cor...I'm so clever I can quote french verbs backwards EASY PEASY....so in logical terms quite the opposite of actually standing on yer head. Theory being if u can stand on yer head u are either very clever or very flexible or both!! Any of that make sense?

Hi Ian, It some ways I can understand why all of these different bodies may 'question' the work you do - but that most definately does not make them 'right' and you 'wrong'. The comment in your post just now about reducing someones 'gait'...after seeing the difference in Mumbles posture last Monday I can well believe that it's possible, and like you say, the difference that these lenses can and do make to someone's life is amazing....it's about 'quality' of life for everyone... The people that question you do so because of ignorance I'm sure...but unless you get funding for further research etc I guess it all goes round in endless circles. Are you able to explain in your terms the difficulties that Mumble has without the lenses on so that people on here who don't know so much about your work will have a better understanding of the difference the lenses can make? - I know that Mumble has already provided her permission for you to do this if you are able.

Hi Flora..It's great that you and your son have found such great positives with the lenses <'> - did either of you find it a big adjustment when you started wearing them? Do you wear your's all the time now?

Now for my 'perspective'..... The plane did not have 'wonky' wings or 'broken brakes' !! And despite Mumble disliking crowds/airports and some bits of 'getting on a plane' she did it!! I think she quite liked being taken hostage actually...it involved a nice hotel with a big swimming pool - which was actually warm!, and she made me look like a lazy so an so by promptly swimming lengths of the pool like an olympic swimmer! And not to mention wine.... food...loads of it!.. ....now for the details of visit... We'd both discussed that we didn't really know what to expect, but agreed that any help would be good and it was definately worth a visit and finding out some more. Ian was really good at putting Mumble at ease...we even got to eat some choccy half way thru the visit!! I came back on Monday night pretty much as 'stunned' as Mumble....if I hadn't been there with her and seen her reactions etc I wouldn't have thought it was possible that coloured lenses would make such a difference. Now Mumble will dispute this...and I've noticed she still is but....Ian most definately did have his hand on her neck whilst he was talking to her and she had the blue lenses on...that was a 'biggie' moment. Mumble being able to 'see' faces was a HUGE moment...without the lenses faces are like blurry potatoe heads (or perhaps thats just her pet phrase for me! ...but..with the lenses on she could make out features and really 'see' peoples faces and took huge delight..(too huge for my liking actually in telling me she could see my wrinkles!! Ian....obviously just to check how detailed Mumble was seeing faces...and I'm assuming not just cos I have a largish nose ...asked Mumble if she could see that feature which of course she did...so I now have a large nose and wrinkles! Mumble then got to 'see' her own face in the mirror and I found that really humbling to be honest....it's something I take so much for granted...to know what I look like, and what others look like.. We did then pop out onto the high street for a quick spot of 'bloke watch' just to double check that the lenses were working adequately One of the other things I found really amazing was the difference in Mumbles posture and speaking tone...with the lenses on her voice was clearer and stronger - altogether more confident. She also stood a lot taller and was not the slightest bit unsteady on her 2 feet...yet standing without lenses on her 2 feet for any length of time means she wobbles and we have to be ready to catch! Writing was another 'revelation' moment...without the lenses it was uneven and you could see it was very uncomfortable for Mumble to write..but with the lenses on and writing the same thing the difference was amazing!....it felt easier for her to write and all the letters were the same height and spacing - that particular moment I have filed for future ref re my kiddie! Now Pearl...about that 'hug'...THAT was amazing! it was such a huge huge moment for Mumble and I was absolutely honoured to have been there and shared it! - I am hoping that once she's started she won't stop!! - but again.... so profoundly amazed that coloured lenses can make such a huge difference to someones life. If I hadn't seen it all myself I would have doubted it was possible.. So a massive well done for Mumble for 'taking a chance' and visiting Ian <'> , and a huge thumbs up to Ian for the work he's doing!

Hi, Just thought I'd share the good week J had at school this week - 5 whole days of getting to school on time or early and with no refusing to go (slight blip this morning, but resolved and we still got there in time!) School have made a few changes/adjustments which I think have all helped. J requested that he move desks a couple of days before half term saying the boy beside him was 'too noisy' - we're not altogether sure what he meant by noisy, but now he has a desk on the side of the room , facing the wall and a very comfy chair and he loves it!! - he has to turn to his side to face the teacher or whiteboard, but when working faces the wall with no one either side of him. I was a bit worried when I first saw his desk as I didn't know he'd asked to move, but he chose where to sit so he obviously happy with the position. 2nd thing this week was he was made a classroom monitor on Monday and was asked to pick out his own partner - he's had some very positive comments in his diary about how 'helpful' he's been. <'> He also got some positve comments about ' trying really hard with english' 3rd thing!! - all of his class have been given older students as 'mentors'! - something which I'd asked for back at beginning of Sept...theory being they have an older 'friend' who can look out for them, or they can go to with anything they might perhaps not want to speak to teacher about. I'm really pleased with all of these things and they seem to have made a difference to J's outlook at moment re school so all good stuff!!

Great news about the taxi Mumble!! Well done Taxi's....Plane's....Trains.....what next?? Oops...and big well done to JP too !!

Ouch - sore feet , I'll do anything to aviod sore feet and blisters! - makes me grumpy of the year! Always choose the softest shoes you can afford If you want some height in yr shoe or boot go for small wedge heel - more comfy usually and easier to walk in - I can't walk comfortably in anything I think my heel might roll over on, and the way you walk can affect the way your shoes rub Vasaline either on the heel as Viper suggests, or I rub into the back of leather shoes at that particular spot before I wear them The blister plasters avaiblle from that major chemists that is almost a shoe are quite good but you have to get the 'position' just right else they rub off (well they do on my huge feet anyways

Ouch - sore feet , I'll do anything to aviod sore feet and blisters! - makes me grumpy of the year! Always choose the softest shoes you can afford If you want some height in yr shoe or boot go for small wedge heel - more comfy usually and easier to walk in - I can't walk comfortably in anything I think my heel might roll over on, and the way you walk can affect the way your shoes rub Vasaline either on the heel as Viper suggests, or I rub into the back of leather shoes at that particular spot before I wear them The blister plasters avaiblle from that major chemists that is almost a shoe are quite good but you have to get the 'position' just right else they rub off (well they do on my huge feet anyways

I can imagine.. <'> I admit I was worried about going to the childrens hosp in the end after seeing how distraught he'd got at the blood test dept...I can well imagine how awful that must have been for your son and for you to watch. The hospital I went to and the bloods dept refused to pin him down - which is probably defiifernt practice in diff regions/hospitals I suppose. But def I'd recomend the gas and perhaps it's worth you getting a letter from the Gp for you to keep for future ref so there are no arguments about him getting it. Hope you both feel bit better soon <'>

Hiya - had similar problem with J and they sent us to the childrens ward at local hospital. Instead of pinning him down they gave him loads of Gas and Air!! - they sat on the floor with him and let him see the needles and wire and have a play and bit of a chat...then kept letting him try some laughing gas ...obs mummy had to have some too!. In the end he was tottaly giggly and floppy and he laid against me whilst they did what they needed to. We would never have managed otherwise cos J is absultely petrified of needles and ran out of blood test dept several times. I'd def ask for some gas/air for next ones - they should be able to accomodate

Hi Jenrose, sorry to hear you're seperating <'> I officially moved out from my ex's house when J was 3.5 years old, at the time I said that mummy and daddy were still best friends and still both loved him lots and that we were going to 'share' him going forward. I was lucky in that my ex helped us move and did things in the new house and that helped J to 'see' that we were still 'friends' We were very very strict on routine, and made sure that we kept to it as much as possible and indeed have continued practically with the same routine now for the past 5 years. It's slightly more flexible these days as sometimes J will want to have an extra night or mums, or sometimes he will go away with dad. We've never told him he has a 'choice' as such about which nights/days he's with either of us because I feel he's too young to have to make a choice between either of us. What we do is if I sense that J's feeling a bit down or poorly and I know he'd rather stay at Mine I call his dad and we either miss a day or agree up front with J a diff one...and the same in reverse if J wants to do something different with dad. He has his own bedroom exactly as he wants it at both houses, so that he feels secure and that there is 'space' for him. I have never ever said anything derogatory about his dad, and have encouraged him at all times to play an active role - he normally has J 2 or 3 nights a week with one of those being sunday pm. J always knows which days of the week are 'daddy's days - but if there if anything going on with a friends party or something he really wants to do then we change the days. J has asked why we are not together..I said it was because Mummy loved Daddy like a brother now, and not like a boyfriend and that sometimes that 'just happens' with grownups...he said 'ah...so does that mean you don't want to kiss him?? - ermmm...yes J something like that I have over the last few years started lots of conversations with isn't daddy lovely...your bedroom at daddys is great....lucky you getting 2 lots of pressies for xmas etc etc. It can be tough, I don't know the reasons for your seperation but if you and ex can manage to act as nice to each other as possible, put the kiddies on top agenda and file the rest then hopefully you'll all get through it and out the other side Good luck and take care <'>

Hi, Some of you may recall that J saw Camhs back in July this year and they stated 'Social and Comms' disorder and would monitor how things went. Then J went back to school in Sept (into yr 3) which was a huge change and we've had all sorts of problems with J refusing to go to school, having panic attacks, struggling with writing, refusing to do english etc etc. So the Psychiatrist we saw back in July has been talking to several of the teachers at J's school including the Senco and LSU teacher and a few weeks ago I was told we'd been referred for an Ed Psych review and a SALT review. In this mornings post I got 2 appointments at Camhs...1 with the consultant for just parents (The Diagnostic Interview for social communication disorders) for 2 weeks time, and 2nd appt is one for J in early Dec for an ADOS (Autistic Diagnostic Observation Schedule). Now I'm in a panic for a few reasons.... I'm really shocked that all these appointments and assessments seem to be coming so fast now...and especially appt's so soon...I'm guessing thats because of the problems we've been having and the comms between school and Camhs...But I can't seem to get my brain around the fact that it's obs not just me any longer with suspicions!! - any help getting my brain in gear would be good please. The other reason is that it specifys both parents to attend the DISCO and J's dad is currently 'unsure' about whether he wants to come or not. I don't even know if I want him there or not - for those who don't know the history, he's my ex, we get on great, but thus far has been very reluctant to consider AS. He has still not even read anything I've given him despite saying about a year and a half ago when I first ran thru the signs that it sounded very much like him! He doesn't really 'see' everything I see, but thats mostly because I tend to do all the 'social' stuff with J and he does more 1 on 1 structured stuff. Plus they are like 2 peas in a pod!! I am rambling...any words of wisdom/advice/info on either the DISCO and the ADOS really appreciated!

I am petrified of mice!! - even the ickle pink and white chocolate ones do nothing for me!! One of the cats brought her second mouse of the day home for me tonight and ran into the living room where J was J shouts ' Mum, Mum...cats got a mouse!!!''' I ran around around using bad words and jumping up and down like a mad woman... J then tells me to leave the room...he's not scared of mice! He says I'll call dad and he can tell me what I need to do ...in the meantime I shut J in the room with the cat and the mouse and dished J his dinner up. Took the dinner back in and said here u go and put it on his table...J said 'I'm not sitting there incase the mouse comes back to life and runs up my trouser leg! I said 'Well don't worry, I'll stay here on watch out whilst you eat' J then said 'Mum...whats the point of you standing there?? as soon as the mouse comes up you're gonna run!!