katysmum

Hi all This may become a lengthy post, so I apologise in advance!!! To try and be brief, I had Katys annual review of her statement back in September; she was on band c, approx 17 hrs per week with classroom assistant in mainstream. Katy had not been coping in school for some time and has been medicated since last June, and she was becoming increasingly anxious. Anyway, to try and be brief, the review was in my opinion a disaster. I was asking for increased funding, but he lady from the LEA wanted to withdraw Katy's support so she didn't get learnt helplessness??? Anyway I came away from the meeting very disappointed. After weeks of feeling frustrated, I wrote a very long letter to the headteacher school, outlining Katys difficulties, most of which were in the report from the statement review, things like- which the lea said-" when katy is unsupported she does not learn" etc. I put 3 proposals forward in the letter, 1 being we finance the shortfall of unsupported hours, 2 being we flexi school her ( take her out when she was unsupported and 3 was we remove her from school and educate her solely at home. I did lots of research, so I knew what I was talking about!!! The head sent my letter to LEA for advice, and apparently it ruffled quite a few feathers!!- it was quite long! Within 2 weeks, the lea increased Katys funding to band D and informed me they were sending the case to county moderator panel for possible band E funding. That was held on the last day of term before Christmas, and the panel increased it to band E with immediate effect!! So 1st week back at school, and they had changed her hours to suit new funding and she now gets 26 and a half hours a week classroom support and 3 hours per term 1:1 with a specialist teacher, increased from 17 hours per week classroom support a week and 1 hour per term specialist teacher time. I am thrilled. It just proves that you don't have to accept everything you are told, with a bit of parent power anything is possible!!!! Fighting the system can be very tiring and frustrating but don't give up; In 3 years I have gone from battling for her to be assessed for a statement to now finally getting an adequate amount of support. Thanks for reading Sharon

Hi All My daughter, aged 7, diagnosed AS has been on risperdal for 3 months now, doses of 0.25mg for 1 week, then 0.5mg and for past month 0.75mg, given at night. For us personally it has changed everything. Not that I would suggest medicating is the answer, but for us at the moment it helps. Fortunately for us the hunger side effect is a positive. Katy is very underweight with what was a very restricted diet, and was prescribed fortijuice dietary supplements. She now no longer needs them and is eating much much better.And she is sleeping which is a godsend! She was only medicated because ourselves and her doctors all knew she was on verge of a breakdown so intervention with medication was a last resort. Like I said, it seems to be working for now, and we are aware that we need to tackle the causes of her extreme anxieties and try to help her cope, but for now we are enjoying her! Sharon

hi this happened to us last year with our AS diagnosed daughter. The LEA said "she didn't meet the criteria for statutory assessment" !!!!!!!!!! We appealed and a date was set for tribunal. As soon as this happened the LEA agreed to assess. bureaucracy gone mad! NEVER TAKE NO FOR AN ANSWER. Good luck Sharon

Hi all Thanks for listening all. Decided I will just put up a fibre optic tree this year, and keep the rest of the decor to a minimum. Kids finish school on friday so will do it over the weekend and get all the kids to help- that way it will be a gradual process for katy. Also keeping pressies to a minimum. Katy doesn't "play" so christmas is terrible for her when she gets pressies from people she is expected to play with. Hope that makes sense! She'll just be getting books( she reads all the time!) and decorative things for her room. Just being able to write all this makes it all seem easier to do!!!! Thanks All sharon

Hi all My Katy is absolutley beautiful too. She has the bluest eyes and her hair is "cream" coloured. She is just gorgeous and I have read on this thread of somebody been stopped in the street all the time. That used to happen to me all the time when she was little. I remember once in the bank when katy was 3, a lady came to me in the queue and said she had never in her life seen such a beautiful child. Katy was screwed up in a foetal position by this point because she had been approached. All our children are beautiful though, inside and out!!! sharon

Hi all I feel the need for a good rant- get it all off my chest! you all must be sick of me doing this so apologies in advance! I'm debating when to get the christmas decorations out?? Have to do it soon to keep my other 3 kids happy, but katy doesnt cope well with it all- strange things all over the houce etc. And then theres the obligatory trip to santa. She will speak to him now, but doesn't get why he gives her a little prezzie when she's just told him what she wants! Then there's the upset at school- when they should be doing numeracy, they are practising for the christmas play- AAAHHH- thats enough to send katy's behaviours into overdrive, her routine has gone and she is confused! I feel like cancelling christmas!- but the wine helps!!! thanks for listening sharon

hi anxiousmom I'm understanding you completley!! I have "friends" like that too, oh and a family too. My 5 year old was diagnosed 12 months ago with aspergers, and as a result we claimed dla to which a friend of mine retorted she was gonna hit her son on the head "to get a bit of that 2!!!!! Like somebody else has said with friends like that who needs enemies. But I have concluded ignorance is bliss. . One of Katy's stimming behaviours is to lick- people, possessions- anything, it just makes her feel better. She once licked one of my son's friends who recoiled and humilated her for it. She was distraught. Children can be so cruel. Sorry for the rant, feeling a bit stressed- christmas and all of that! sharon

Hi all feel the need for a rant- again! Katy has been having a rough spell since september- back to school! She seems to be regressing into behaviors we thought we had got over. She seems to have gone back 12 months. Today for instance, I had to take her to see doc, and she sat in waiting room not talking, but signalling and pointing- and flatly refused to speak. then she picked up a book and read it to me, but she still wouldnt talk to me if I asked her anything. Just getting her to school at the moment is a battle- she tries everything not to go, and sometimes has to be dragged off me screaming and carried in. great start to the day eh! We are doing a visual timetable now, which does seem to calm her, unless, like today, she was ill and had to go to docs, but that wasnt planned so that was a problem. I wish I had a crystal ball, life would be soooo much easier!! Sorry for the usual waffling. If anyone has any tips about taking medicine, I would be very grateful- she is on a 10 day course of antibiotics for scarletina and getting her to take it is a nightmare. thanks sharon

Hi all another bad day, and then sat and watched this.... and cried. Like somebody else said, another boy!! I am glad AS awareness is becoming more and more, but not all as are savants. maybe I am being picky, but for me the outcome was that he was gifted, and his problems got pushed into the background. Yes all of our children are gifted but their syndrome is also very disabling. sorry to sound so neg. sharon

hi all gosh it is so annoying- other peoples ignorance. I had the old classic today when I told another parent at school that katy had as- " no you're joking. she looks okay" God i could scream!! why would I be joking and what do you want her to look like???Then there's the " do you not think she's just playing you up?" or " can't you get her any tranquilisers"- katy is 5 and my mum said that!!! you just have to laugh!!! Life's tough enough without these little nuggets of wisdom from people that think they know best! anyway rant over ( its been a bad day!) sharon

hi I can relate to this too. I have a large family and I no longer have contact with any of them, apart from one sister in a different country. At first, after diagnosis of as, my mum suggested tranquilisers as a cure for it!! ignorance is bliss eh? Since then the rumour mill has gone into overdrive and the latest news is that there is nothing wrong with Katy and we have made it all up!! After all, she looks "normal". Maybe this is just being in denial, but it sure doesn't help. sharon

hi we were awarded high rate personal care when katy was diagnosed with aspergers syndrome, aged 4. we were then told to reapply at age 5 because she could be entitled to mobility component. did all this, but didnt qualify, but still qualify for high rate personal care. should we appeal or just leave it at that?not sure what to do. thanks

hi all we went in june and it was fantastic! we got the blue card for katy by just telling the staff at "city hall" about her problems- we did have a letter from the health visitor to say she aspergers, but we had left this in the hotel room-oops! we got to meet the characters without queuing and on the rides, and we were able to go in the disabled areas to watch the parades, which really helped, because we could keep katy away from the crowds. needless to say katy did have a few issues, but it was much easier than we expected! we got katy an autograph book which gave her a purpose to approach the characters- before that she was happy to view them from afar, ie "well, i can see them from here!" the main reason we went was because we all needed a hol and katy is obsessed with the disney princesses! we were so impressed we are planning another trip! and because she is still obssessed with the princesses so its the easiest hol to have!! sharon

hi katy is terrified of the wind and of things being "thrown away". she insists on being completely naked to go to the toilet in case anything falls down the loo. she is obsessed by disney princesses- in particular mulan- but this is better than the rubbish obssesion we had a while ago where nothing could be thrown away- including waste food!! you have to keep a jolly outlook!! I really shouldn't post after wine!!!! It has been "early bird" day and I need it- thats my excuse anyway!! sharon

hi all has anyone had any joy in applying for the mobility part of dla? katy will be 5 in 2 weeks, and we were told to apply then for it, now i have read this and we could have applied sooner. katy already gets the high rate of the care componenet- which beleive it or not, we got within weeks of applying, first time, no appeals!!! we were shocked to say the least! dreading the form filling-any tips would be fab thanks all sharon