Annea

Anyone know how much longer I might have to wait to hear from them re my family fund application? it's 8 weeks now.... Anne

And I apologise too, Having had a hell of a week with several teachers who have blatently lied to our family. It is really frustrating when I saw what I thought was a pro teacher - anti teacher moan thread. I don't see why anyof us have to defend our professions, we are all here as anon parents not as advocates for our career choice. My son was bitten at school, this is the third time! The offender also bit another child the day before. I was told if I wanted to complain, to put it in writing with dates of the other offences. As I didn't keep the dates, i looked in the accident book and lo behold only the present incident was monitored. I was then told that if no other incidents were mentioned in the book, then they simply haven't happened. The fact that the day before we had discussed this with the class teacher was totally forgotten and she said, it hasn't happened!! I can't believe that all the teachers have turned there back on the incidents, after all my son was and is the victim here! I understand they are worried because they haven't acted properly on the incidents and haven't actually documented them, but to lie blatently is very offensive. This is why I was upset, and with my Asperger daughters school also lying constantly to me, I too feel a very low opinion of teachers at the moment. And I personally totally feel empathy for Mrs Fussy, I must admit though I didn't read her post as that she really thought that all teachers were real criminals, I read it as, "this poor woman is having a c**p time too with the education system", we all know good teachers and I felt that she was being made to feel bad for vocalizing her upset, whereas maybe she needed support, not something else to feel bad about. So to Bard and Elun I am sorry if you feel uncomfortable with people condemning teachers who have wronged them, and I apologize if my offering support to Mrs Fuzzy offended you, we all have to agree to differ. >>>>>> Moving on too.... Anne

Like any profession there are good teachers and bad! it is hard to remain objective when fighting all the time.... We have some excellent teachers at our school, and yep we have some who blatently lie. The other day before the ed psych saw my daughter, the teacher tried to 'coach her' telling her what to say etc... this I suppose may be seen as an attempt to help and not stress my daughter, but the cynical side of me thinks it was to try to make the teacher look good (long story) Therfore the 'objective' observation just didn't happen. We also have teachers who have their own children with Aspergers who constantly tell me that they are the experts, being teachers as well as parents of Asperger Kids.... It's a tough one! Having read so many posts on here, I don't think I have met so many wonderful and caring people teachers or not. I also think we have to understand that teachers are people too and as well as the good ones, there are most definately the bad ones! And this has to be a place that people can feel safe to vent... so teachers here, you know you are not the ones being spoken about, so please don't take away the rights of others to have a moan about the poor teachers they encounter, we aren't making it up, and althougha post saying "all teachers are rubbish" might not be accurate, I think we all know that the person posting at the time must be really going through the mill to have written it in the first place. Sorry if anyone thinks I have spoken out of turn, but to me this place has been a haven where I can share my deepest concerns, and It would be sad if we felt that we could no longer talk openly for fear of upsetting those who we are not even talking about in the first place. Anne

Before I got my forms the lady on the phone told me that DLA was not necessary, my eldest has highest care but my other daughter I am claiming for doesn't get DLA as i am waiting disagnosis before i apply. I was told a supporting letter from a paed would be satisfactory. Great to hear about the horse riding lessons, maybe my daughter will get funding for singing lessons? Anne

Big Hugs Hev, It can be so very tough can't it.... All the people making decisions about our lives, about what is and isn't important to us, about how things affect us, and most of them not having a bloomin clue about living with the difficulties we face day in, day out. I too am fighting for a statement, fighting for diagnosis for child 2, fighting for recognition that my daughter has been ignored for the past 12 yrs, fighting the school so that they are aware of her special needs... fighting to remian sane ( or should that be to refind my sanity) Fighting, fighting fighting...... All I can say is that you are not alone, and at least we can come here and vent, and ask for and offer support.... and keep on fighting! Anne

My daughter is actually less controlling now at nearly 13 than she was in her early years. We do however still have agression problems. Within the family setting where she feels comfortable, she is very 'bossy' and pushy, but as she has to try to keep her emotions in check at school and outside etc, I have sort of accepted that within these walls something has to give. Really tough though isn't it when we look at our kids and don't like how they are sometimes (a lot of the time) Anne

Does anyone know what sort of things family fund will fund? I am awaiting a decision and applied 4 weeks ago, I am under the impression it will be several more months before I get a reply. My dd loves singing (she has a very husky voice due to all the screaming) she would love singing lessons but they are far too expensive... Do you think they might fund these? or is it generally a 'physical thing' thye will fund. quote michelle>> I've just received the forms, but there only appears to be space for 3 items, so I'm trying to decide how to prioritise things. J was diagnosed at 4, but this is the first time I have applied and he is nearly 7. As he has grown out of his 3ft trampoline, I was thinking about asking for a trampoline, but I want one that is good quality and will last a few years. Has anyone any advice which ones to get, or which ones to definitely avoid? I was also going to ask for a computer and a holiday, but thought that might be asking for too much! There are loads of things that would be useful, such as treehouse/climbing equipment - anything to get him off the playstation and ds! << end quote The things I asked for on my form a month ago, I have now had to go out and buy as i couldn't wait, but I was told that they would come and talk to me anyway, and people often get different things than on the form.. so maybe don't worry too much about what to put down? Anne

Thanks, I actually have an IPSEA case worker, but due to the fact my daughter had very few real tests done, he felt the need to use the legal system to have her fully and independently assessed. he put me in touch with a solicitor who is working for us on this and a dda claim. He has now stepped back as he felt it inappropriate for us to have conflictiong advice from both him and the solicitor, although i beleive he is prepared to represnt us if and when we have to go to tribunal. It's very frustrating.... We get so near only to be knocked back again..... Anne

I am so very frustrated!!!! The LEA decided to assess our daughter for a statement, and yesterday we attending a meeting with the ed psych. She has her 'boss' with her, who said she might chip in if there was anything she wanted to know, but she totally monopolized the interview. She doesn't know my daughter, and it seemed from her questions that she was just going over old ground, making suggestions that had already been tried and failed. If she had read the notes she would have known this and it felt like such a waste of time! I also thought that it might be an impartial report, but she was so on the LEA side of not statementing it was untrue, every single point I had, she replied with " Just playing devils advocate here but......" she even said this when we talked about the way DD had been treated by some of the teachers, she made excuses for them, heavy workload, insufficient training etc.... I didn't expect them to take my side, they don't do they, but for her to be so anti 'real help' it really uposet me and made me cross. She went on to say that she knew I might be frustrated that their report might bring up a lot of things we had already tried.... surely she understands that the reason one asks for a statement is that the school have tried (in this case for 2 yrs) with no improvement, therfore external help is required! Have I missed the point totally on the assessment? We have also gone down the legal route and DD has been assessed by an independant ed psych and SALT, whose reports will be used to represent our case to the assessment panel, but I wonder whether any of it is worthwhile! Anne

Hmm, my daughter won't have ear plugs as she feels they will get stuck ( I know they won't) so I was hoping to find some brightly coloured ear defenders (over ear type) Some postt I read mentioned placing a wire from the defenders to make them look like music head phones... I thought that was a good idea. Anne

THE Pelter kids ones look fab in pink but it says up to age 7, my daughter is nearly 13 so will thesee be too small? She has a fairly small head but doubt they would fit unless very generously sized. Anyone know of anyother brightly coloured ones for older kids? Anne

Hi all, my 12 yr old dd with A/s is hypersensitive to noise and everyday gets very over whelmed coming in from noisy school to a noisy house (4 children). We have tried telling her to sit in her room for peace and quiet, but do understand, that there is no where in the house that is quiet. My young son has a pop up tent to play in and she recently asked for one to sit in. I was also thinking of ear defenders or some such like to cut out noise, a couple of questions? Does anyone use any sort of noise reduction techniques or devices such as ear defenders? Are their any ear defender out there which eradicate noise but are not hugely bulky such as those worn by road workers? Any particulalry for kids with A/S? Anyone have any other ideas or share the same problems? My daughter has tried her walkman, even soothing classical music as well as a range of other noises, but it seems she just needs some silence in her life. She is becoming more and more anxious as time goes by and we worry about her so much. Anne

Does anyone know if he is doing any talks in south wales? I have tried the link but the page is not loading properly and i can't see any links on the page at all. Anne

Initially our LEA turned down our request for statutory assessment, so along with a solicitor, i have been preparing for a tribunal to be held sometime June. Today I got a letter from the LEA to say they have now reconsidered and will assess my daughter, I suppose this just gives us time to prepare for the tribunal once again when they still refuse a statement further down the road. At least we seem a bit further along though! Anne

My daughter was also given higher rate care and lower mobility. I filled my forms in online but over the period of about two weeks using the NAS guidelines. I then copied the forms and sent them to my daughters paediatrician, Initially even though I had asked them NOT to contact her GP who never saw her and to contact the paed, the forms were sent to the GP. I had to go to the GP and ask them to send them on directly to the paed as I was told if they were sent back unfilled it would discriminate the case. The paed was brilliant and filled the forms in using the forms I had sent her, so we were saying the same things. It is a nightmare though especially the mobility part, as it is so restrcited. I have problems with two children one diagnosed AS one not yet sure. I also have a very active 5 yr old who needs to be watched <as normal kids do!> I also have chronic fatigue that results from an incurable liver disease, so really struggle myself when out, so it is very difficult to control all the children especially parking some distance. I myself was turned down for DLA, we haven;t yet applied for my youngest as we are awaiting assessment, and my AS daughter has lower mobility, but combined we really do struggle! its a shame they can only see as far as their noses and not how we all cope every day . Anne

Hi Shortie, I too was told this by my daughters diagnosing doctor, she told me that As my daughter was very highly strung and anxious then aged 10, she would be at high risk of developing anxiety related disorders and depression. Anne

Clare loads and loads of hugs.... our kids are the same age, and it is soul destrying watching them not cope. My hubby too doesn't always understand and sometimes even thinks they are winding him up on purpose but we all cope differently. I wrote a post a few days ago, feeling rock bottom, and although I am still not quite right, I am on the up again..... Just waiting to see if i can pluck up courage to make yet another call to school to try to sort out an ongoing problem. You will get around this clare, and con will get better...... just keep posting here and asking for the support when needed. Anne

My daughter has never used the school bus as I knew she would never cope..... She is hypersensitive to noise and can't bear to be touched, she is also prone to bullying. I applied for an LEA funded taxi, They tried everything to deny it to me, but finally I won my case with the help of a friendly letter from her paediatrician. She has had the bus for 2 yrs now and I know a review is coming up but I will not give in. I knwo a few adult asperger sufferers who have never travelled on public transport as it is too stressful. Why make these children suffer more than they should just to save a few coppers.... I say go to the LEA and ask your paed to back you in the quest for a taxi for safety reasons. I know I will have to fight the review each year, but they are not having the taxi off me!!!!!! Anne

Thanks all, I will continue my quest.... The reason I was asking is becuase my daughter aged almost 13 diagnosed A/s 'appears' to cope really well at school. She 'appears' to have lots of friends and doesn't 'appear' to be overly anxious at school,,, however when she gets home she turns into a quivering wreck and is often in tears. She recently told me that she "doesn't know how long she can go on for like this" Now even an independent edpsych said she was surprised at how well she appeared to be coping.... yet if I talk to her at home she say's she likes school.... when I ask her which bits she likes, she tells me she likes to learn...... Their is nothing else that she really likes although she says "some things aren't as bad as others" As she gets older, she is yr 8 now, she eseems to be suffering more and more symptoms of anxiety and negatve stress..... and yet because she copes so well ay school she seems to be masking her own problems....... She gets teased a heck of a lot, and the kids seem to have no problem at all in picking out her being different, but the teachers just seem to think it's me, making a fuss! aah well, I'll show em one day!!!!!!!!!!!!!! Anne

When my daughter was seen last by her speech and language therapist, I was told that moves had been made to differentiate between the diagnostic tests for girtls and boys with Asperger Syndrome, due mainly to the huge variables in which the different sexes present and cope with symptoms. Does anyone know about this? Can anyone point me in the right direction towards links for new research? I would ask the SALT but due to personal probs she is uncontactable at present. I am grateful for help Anne

Last week, I was on a real high.. but thelast two days have been rubbish!!! As soem of you might know My dd diagnosed with A/S two yrs ago, I am smack in the middle of preparing for a tribunal for her statement, I also have a disability discrimination case being brought against the school because of a trip that she was excluded from last year... I AM JUST SO TIRED!!!!!! When the school speak to me, they are all "oh special needs children are so important here" that might be... we just seem to differ that my daughter has special needs.... they pay lip service to her needs and just don't understand why some of their lack of preparedness cause me so much difficulty. My daughter has an LEA supplied taxi, and the company is excellent! BUT they need have stability in the times that they pick my daughter up frm school - obviously they are a business.... but the school just don't seem to understand this.... they change the times of choir all the time, it's on a different day each week, and at different times, sometimes it's cancelled on the day... drama is the same... and I often have my daughter in tears because she is either left stranded waiting for a taxi for an hour, or I have to cancel the LEA taxi and try to get her picked up at a different time... it's stressful all round... the school just see me as a fuss maker and it's a horrid atmpsophere when I go into school. Ultimately the school is good and the education much better than anywhere else so I have to put up with it.... I feel like a deflated balloon today!!!! sorry to rant..... I knwo you lot understand and I just needed to vent!!! Anne

Thank you

My daughter was awarded this year highest rate care and lower mobility with a review in two years. I think I have read in the DLA thread on this forum, quite a few people who have been turned down second time? Anne

I am often on here moaning, so thought I would smile on here today!!!! My 13 yr old with AS asked me to see soemthing she was writing.. She has written the best bit of a book on the care of pet mice (animals are her fixation) It is fabulous... she has even taken lots of pictures with my digicamera..... The only problem is.. she wants to publish it and I'm not sure whether or not she will be dissapointed if it doesn't happy.... Does anyone know about self publication? I am so proud of her..... Anne

I am so sorry you has such a horrid time, for us it was the total opposite, last easter addmitedly when we went to Magic Kingdom the first day, we met a real snotty lady who was saying to everyone... passes are not queue jumpin passes.... I was so scared I turned away.... In Animal kingdom, I was asking for something unrelated and my daughter with A/S had a meltdown.... The girl behind the desk was fantastic, and gave me a fresh bottle of water and asked if there was anything she could do, I told her about the day before at Magic Kingdom and said "It's not that we are quesue jumpers, people just don't understand' she told me that the woman was having an off day and gave us a pass that would fast track us on all rides or if that wasn't possible we would be allowed to use exits. She also put on the pass a mark which allowed us to use wheel chair enclosures. When we went on the Kilimanjaro safari, the ques were huge and I asked if we could stand somewhere quiet and showed my pass, he immediately told us to stand in the disabled bit, another attendant came over and asked about the problem and said "nope they can't wait here, the diasbled access truck, will be a while getting back, this little lady and her family don't need to be kept waiting. We were immediately taken to the front of the queue and put on the next truck.... It was amazing! when we got back we were asked if we wanted to go around again!!! I think it all depends on who you get on the day!! I was worried I would be asked about the dissability as she looks absolutely fine, but Nope apart from that one woman on the first day everything was great.... Another incident happended on entry to magic kingdom on day 2 when everyone had to do the palm, finger print thing at the gates, the queses were huge and DD was getting agitated as she didn't know what to do, the security said"Come on miss you are holding the queue" I said... "Please be patient she is autistic" (this phrase seemed to work better than Aspergers) The security immediately told the queue behind us to move over to the next queue and had a chat with my daughter, explaining why they did the process, she was so kind. My daughter soon calmed down as she wasn't feeling rushed.. and disaster was averted! Hope you all have a great time if you are going this year, and I hope moncs you are not put off going again! Anne