Anneuk

Big Hugs Kathy, My daughter is a high achiever too and is also a perfectionist and gets terribly demoralized if she feels that she has failed. One of our primary teachers told us they rarely give the top marks because it laves them no wehre to progress, Personally I sort of agree with this, also I feel that in my daughters case she is going to have to face lots of situations where she is not best at things and she has to learn to cope with this, it is hard for her and us, but over the past few years she has got better and better. Infact as a yr 7 (shes 11) she has recently been getting level 7's in some of her subjects and this is way above what her peers have been getting, on her report recieved yesterday in those subjects it doesn't seem to reflect this in the actual marks which are averaged out, etc etc My daughter just shrugged whereas last year she would have been inconsolable. I think to get the teacher to change her marks, would be giving your child the wrong impression and might not be good in the long run, instead work on the coping stratergies for the dissapointment. As for her praise, this is probably the best indication of how your daughter is really doing, Try to emphaisie this to your daughter telling her this is more important than the actual marks which for loads of reasons such as Lucas sometimes these marks are near impossible to achieve. As for keeping up with the Jones's and comparing test results. I will not be part of this at my school, when all the parents start being silly I walk away this immature behaviour about who is better than who is sad and pathetic and we should all rise above it. Just my opinion, but I really do know where you are coming from Anne

I personally think that teachers want us to feel like we are over reacting, when I have had a 'go' at the head for one reason or another at my childrens school, she is ever so patronizing making it seem like it's me that is being too demanding, then all the teachers look at me in a certain way so i'm sure I have been talked about in the staff room. The other day i was told I should start to 'give a little' I told them that I had all ready given the most priceless things I had, ie my children and that she should be grateful as she got to see them more than I did... not the point I know, but it made me feel better! Lottie, just remember when you are made to feel like this that you are the only person who will stand up for your child and if they think less of you for it, who cares? Anne

Just a quick update, The SENCO head replied to my letter and told me that J should be getting 25% extra time for her assessments and she has written a message in her planner so that at the beginning of an assessment J just has to show the teacher her book, the message explains briefly that J must have the required 25% extra time, the reasons why and reminds them to read her IEP for further info... So I am fairly happy..... Anne-

When she started at secondary, I wanted her statementing, I was told she would not get a statement becuase she didn't have educational difficulties. I said just being at school raised her stress levels and caused her difficulty but they said that didn't count -- fair enough. I was then told that having a statement would make no difference and that she would be treated the same whatever. Since then I have had a couple of chats with the head of special needs when their has been an incident but other than that, no follow up. When she was in yr 6 at primary I used to go in two or three times a year and discuss progress and sign her IEP but not here, I presumed it was becuase things are different at secondary. I think the problem is becuase she generally copes really well and is getting better and better at hiding her stress at school, so things seem ok at school but she is more tempestuous when she gets home becuase she can release it here. Anyway I sent a note in yesterday addressed to her English teacher, the note was promptly despatched to the head of special needs so i wait with baited breath. The last time I tried to set up a meeting, Iwas told that I must understand that it was a main stream school that I had chosen to send her to. I just now answer that they must feel very lucky to have her Anyway all comments again appreciated, I will let you all know how things pan out. Anne

Am so proud of her , she got 2 more results today one level 7 and one 6b for the one she didn't finish,. What I am worried about is if they say "well she is already above average so what are you worried about".... I am thinking she may take a GCSE in English a bit earlier than her other subjects to allow her less stress on other subjects. It is so frustrating she is doing so well in English but In Maths where the teacher only cares about the high flyers she has dropped two grades as she is terrified to ask him questions. tonight she had one of her biggest meltdowns in the past few years, in the end I just ran upstairs and hid my head under the pillow, then she started to hyperventilate and got herself to the point of passing out... so hard, to be so glad about one aspect of her life to then be brought down to earth with a huge bump!! Sorry just needed to rant...

Thank you for your help, In the past when I have made queries, I am always very intimidated and am often told " well this is a main stream school you know" To which I reply, "and you are so lucky to have my daughter as she is a real credit to your school" but I still come away apologising for her behaviour! I just think they try to do things the easy way and don't want anything to rock the boat. Anne

Yes Amazing how many of our children have no school issues isn't it!! So she is 'entitled' to have extra time in all assessments? Is their any particualr legislation or documentation I can refer to? DD has an IEP but no statement, in fact no extra care at all as the IEP seems to mean diddly squat...

Hi All, Wonder if anyone can help, My DD is 11 with Aspergers and Is doing superbly well at English in yr 7. She is getting level 6A's and 7's. However a problem has come to light, to date the regular assessments she has had in class have all been of the short answer type but recently she had an hour to write 2 A4 sides of an Essay. The thing is By the time she has ordered things in her mind over half of her time has gone, and she can't seem to skip laying things out in her mind before putting pen to paper. She is now getting very worried about her latest assessment as she feels she will be marked down due to the fact that she only wrote just over one side A4 when the minimum was two, I'm sure the content will be excellent, but still... What I need to know, Is this, are teachers able to offer extra time for children with AS to complete assessments and further still, what will happen in GCSE's and other exams? DD was very brave and tried to expalin her situation to her teacher who replied ' tough'!!! I am furious, but I want to write a note and be able to be calm and to be able to expalin the situation in a legally correct way, I don't want to fuss if dd just has to get by... I know this is a rambling letter but I don't have my daughters gift of the written word I hope someone can offer advice.... Thanks Anne

I was sent on a 'parenting course' about 6yrs ago.. long before J was diagnosed with AS and I felt it was just them saying to me... this is a parenting issue.... When I was their it was grim.... they were all very young single mums (I haven't anything against single mums) who basically really didn't have any parenting skills... This in my opinion who the courses should be for. I was told that i needed to 'play' with my children and to chat to them and sing to them.... I have always been very 'interactive' with my kids and am always on the floor playing and laughing and joking.... This course did me more harm than good as I came away with my self esteem in tatters.... To be told that you are doing everyhting wrong, and that you are responsible for your childs 'behavour' issues is irresponsible. it took me years to accept the fact that I didn't cause my daughters problems, and years to be able to stand up to health officials and put them straight.... The problem is, if you do stand up and stand you ground you are often labelled difficult and sometimes even aggresive (why do so many people get assertive and aggressive confused) Personally I would send these health offcials of a 'caring' course ...... JMO Anne

My 11 yr old dd has now been giagnosed with AS for 1 yr and is doing very well... I had noticed some probs with my youngest daughter... I took her to the doc and he told me that she seemed to have some hyper mobility in some of her joints on right side but poor joint mobility in her lower joints.... She always walks tippy toes when barefoot, and she falls over if she tries to stand straight with both feet flat to the ground.... She also has a few other probs such as frequent bed wetting at least 2 times per week (she is now 9) and sometimes has accidents in the day too.... she is very indifferent emotion wise, but when she does get upset or angry, it is always OTT... The Gp Mentioned Dyspraxia, but said any physical problem had to be discounted before they looked at Neurological so she has been referred to an orthopaedic consultant... Question is, does Dyspraxia often appear alongside AS or in the same families.... I feel so ashamed that I didn't take her to the docs before as she has 'been odd' for some time.... But my time is taken up so much with J our Aspie.... It's difficult to feel up beat..... We are also going to disney Florida on Tuesday and although excited, I am terrified in case J kicks off and gets hysterical.... Are the staff in the parks quite good and understanding?? (worried about getting arrested in the USA for child abuse) Sorry... I don't mail for ages then it all comes out!! Anne

I am so glad you had a good time at DLP, It seems to be either a dream holiday or holiday from hell this place from everyone i've spoken too... We went three years ago over Christmas and it was a holiday from hell.... I actually got 'punched'!!! by a french woman who screamed obsceneties at me... The reason? We had quesued for ages to see the parade (no mean feat iwth J wanting to bolt every few mins) We secured a great side walk view... this woman with two young children came up after the parade had statred and pushed me out of the way so her children could get in.... I said 'NO' very firmly and turned my back on her, she then shoved me to one side and punched me!!!! My French is rubbish.. And I was so glad her husband pulled her away as I was terrified of trying to explain to the police why this woman had assaluted me.... Needless to say we didn't see the end of the parade.... and left DLP a day early to come home.... -

Yes I know I should have asked who to address it too, but by the end of the consultation J had had enough if you know what I mean, and My priority was to get her out before she got upset.... Thanks to everyone for their help, I too thought it wasn't that expensive, I am on ursodeoxychoic acid for my Liver PBC and that is really expensive, but I don;t have problems getting hold of that. up to now I have had a green prescription for up to 6 months but all the community paeds have apparently had these taken off them and now only have access to hospital prescriptions, that have to be despensed at the hospital. I will try all the suggestions above, I just feel if it's not one thing it's another Anne

Took J to the Paed today and was told that although she could continue on her Melatonin (It has made a huge difference to her life) Instead of being sent the Prescriptions from the Paed, we now have to collect them, from the clinic. Now this in itself is not a hassle as I live two mins from the clinic... However!!! They are now not allowed to despense community prescriptions, only hospital ones which means, a 30 min drive to the hospital (at very set times) an indefinate wait for a car parking space and a 30 min drive home!!!!! She advised me to complain, as her hands were tied... but I don't know who too!!! She also told me that because of the cost ? of Melatonin, although children already taking it could continue, no more children will be allowed to be prescribed it!! (This is Gwent Health Authority In South Wales in case it concerns others on here) I just feel this is so wrong, I am about to embark on having my yo8ungest daughter assessed for AS, and her biggest problem like J is inability to sleep.... Anyone any ideas or would anyone like to rant with me... Anne

Are'nt our kids great... And don't they have a lot to put up with when people speak as I did the other day... I was lost in the car and turned to J and said "I'm going to go left here, i'm not positive it's down here but I'm sure it is!!!!!" She just looked at me in 'her way one eyebrow raised and said riiiiiiiight, ok" She then laughed hysterically for the next 10 mins!!! and now I've written it, its one of those things that doesn't seem so funny afterall!! Anne

Hi all, J has now been diagnosed with AS for nealry a year and she is coping extremley well even though she has started comp. My one concern is that as she is getting older and hormones are creeping in < i think> her anger is sometimes uncontrollable and violent, she is extremly strong and has often lashed out at in animate things causing breakages. However a couple of times her anger towards her sisters has been violent and I am worried in case she lashes out and pushes them down stairs or something.. (thishas nealry happened) I was told by the family thrapist and her child psychologist that anger management doesn't exist per se and is just an 'in' word. She says it's all about working around the situations that cause the anger.. with her AS this can be very significant things and short of avoiding life we can't avoid situations that make her cross. I feel she needs extra help in contolling these out bursts but just don't know where else to go.. We are in South Wales and if anyone has any pointers I would be grateful if you could share them with me. Anne

This is exciting news... my daughtwr likes the rides but can't queue too long as the hustle sets her off... We are off to florida in April so this is great news!! The one question is? I have 4 children three of which love the rides including J who has AS, as my hubby doesn't like rides and stays off with my little one, would they allow all 4 of us to go on through the exits etc or would they think this cheeky? Anne

Thanks for the replies everyone, this is why I asked... I made it very clear to her that it would only be for a giggle and not to make money or for a career etc... Didn't realize it would be that competetive though... i will look at bizzykids site see what they say... Thansk again Anne

I loved this drama too, and found the documentray fascinating to watch after the drama... Personally I loved the way Dmitri was brought in, I felt it was more a bit of romance and a bit of her letting go of the reins and not only letting her kids do a bit more, but also having a bit of a life herself ( i think sometimes we tend to get so wrapped up in the conditions that we forget to let our families live and laugh ---- this is just my opinion and how I felt when I watched it) When I watched the drama, I felt that the little boy with AS was quite severe, and didn't feel that he and my daughter had much in common ( i don't 'know' anyone else 'IRL' who has AS) But in the documentary I was amazed how similar he was to my own daughter. He seemed such a lovely boy as did the whole family, and programmes like this help not only the general public with no experience of ASD's but also families like mine who are on the inside but who still don't know that much. OH one other thing, it was so lovely to see someone elses house look as messy as mine!!! Well done Jacqui and family and thank you for letting us peek at a portion of your lives. I for one thoroughly enjoyed it and my husband who didn't at first want to watch it, watched avidly both the drama and documentary. Anne

Hi Lynda, Total sympathy here!!! My little boy <sure he is not aspie> is 3 yrs 8months and will not poo on the toilet, in fact at all unless he is over dosed with prescribed laxatives. In fact he now goes once a week when we purge him <sounds awful> we have tried so many methods... He is going into hospital in January for a week whilst they try to break his habit of 'holding' whilst checking him out in case anything else is wrong... it is so frustrating isn't it? and also must be very painful for them... Anne

I just thought I'd throw this one in.... My daughter now 11 is doing really well since diagnosis with Aspergers... today she asked me about modelling, just as a bit of fun.. She is very very slim , white blonde and pretty and very photogenic, she said.. "Maybe I could do some modelling mummy, it might help my confidence"! Now not sure where this came from, but I wouldn't know how or where to enquire... I have heard in the past that you should never pay to get into an angency and that proper agencies will take a child who they think has real potential... any ideas? Also anyone experience of it? would it do more harm than good <this is the protective bit of me again) Hope someone can help Anne

I must admit i love this stuff!!! Their is a house near me that is all lit up and I always drive that way home in the evening as it makes me and the children smile!!! Anne

I do too!!!! Anne

Some of you may know that I have been fighting for my daughter to get transport to secondary school (which she starts sepetember) something other than the bus. Well we heard this week that she has been given a taxi door to door paid for by the education transoprt. We are over the moon, when she gets upset, she often runs so she can find a quite place to 'sort her head out' thus we were very concerned about the implications of her travelling to and from school on a bus. Thought that anyone else still fighting might be given a bit of hope.. it's taken about 6 months for the desicion <?sp) but at last we're there!!! Anne

Hi thanks Both, Bid I have thought about assessments, but i fought for all 10yrs of Jacquelines life to get her assessed, and in the end when private. I am prepared to do this again, but with money tight, I wonder if it's just my imagination. Was also thinking about the 'learned behaviour ' thing.. the thing is she isn't like her older sister, most of her 'differences' and problems are not the same as her sisters, I thought they would be if it were copied behaviour.. It can really do your head in sometimes.... wanted to use this smiley as just saw it and thought it looked real cute... lol Anne

My daughter who is 10 and Aspie is starting secondary school very shortly and they are really trying hard to prepare her well. One of the things they are doing is letting her and her best mate spend a whole day in class with the yr 7 following the timetable so that when they come into school it won't be so new. Today my daughters best friends mum pulled her daughter out (even though her daughter really wants to go) as she feels it's not right that she should be a carer!!! This of course was never the plan and she was just going as a friend (and also desperatly needs this day too as she is terrified).. So my daughter has independently written this mum a letter, telling her that she respects her desicion but feels that sometimes people don't make accurate decisions because they don't know enough of what they are thinking about (in this case aspergers) My daughter very eloquently told her how Aspergers affects her, and that she and the friends are friends because they have a laugh and NOT because her friend looks after her. She went on to say that she doesn't need a carer but does need friends and that in her opinion thats not just something children with Aspergers want. She finished the letter by saying she hoped that now knowing the facts that she would re consider, but if she still won't let her go then she will tell friend her all about it and help her through her first day as it will be so new to HER... I will give her the letter tomorrow but not sure how it will be received. Anne