kirstie

Heres the latest!! I phoned my local authority office to see if i had sent the form there by mistake (i think initially they deal with the DLA claims then send them off to Blackpool after so many months)The man on the phone told me they had indeed recieved my forms and he would phone them to find out what they were playing at. Well, this mornings mail arrives, and lo and behold they've sent me more forms to fill out, for, wait for it,a child over 16. Needless to say i will be writing a stinking letter and then perhaps when they actually get their finger out once they realise my son is FOUR and i'm not going to put up with their s**t!

Hi all, i'm just adding to this to say that i'm fuming, I already recieve the DLA for care but applied 3 months ago with the help of The Action Group for the mobility component.I phoned them yesterday only to be told my application never arrived. I'm so cheesed off, does this happen alot? I will now have to fill out the form again and wait another 3 months!! NOT happy!

Hey Linny, sorry to hear you sounding so down.I know how hard it can be.I moved to Cardiff several years ago, i'm from Edinburgh.It was really hard and i didn't meet people easily.In time i did, (and then i left, but thats another story!!) It is really hard as your head is full of trying to help out your child.At that particular time i was tryimg to get the Ed. Psych. to come to the school and see my eldest son, who has dyslexia.It is a never ending battle. I agree, you hold your head up high and stick two fingers up to the prats.As much as it can be draining, i feel very lucky to have such a special child (ren )(my youngest is 4 with AS) and we are always here for you. love Kirstie.

yes i've had the same treatment too.My boys nursery are on the whole pretty good.But we never ever get party invites and there are one or two who are very snooty and look at you as if your child is the son of satan.They clutch on to their little one as if trying to keep them away from your devil child.I@m sure they think i'm a bad mother and he's a prize brat.But i have one word for them bo*@*c*s !!! ha ha ha. I don't want to be friends of theirs thank you very much. take care, kirstie.

:bat:PANTWOMAN IS BACK!!!!!!! with a crash-landing almost impaling myself of yummy munchie things on cocktail thingys, the smell of fear at this thought is present all around the Batcave...... or is that the flutterings of last nights chicken rogan josh???! Have had very trying week and these y-fronts have been bunching very painfully, so cannot,will not think of being one-Pantwoman-supper-hero-ever-again.I hereby enlist the help of ALL our 'supper'-heroes. First of all, Jester (aka the Timothy Claypole of the Cave!!) methinks some much needed jesting is the order of the day for, Delete Woman whom much cheesed offedness is apparent ( i sense a deriliction of the slightly mucky side coming on, could the Pimms and munchies be drawing our Delete woman into our Batcave, come hither Delete Woman, Hob nobs ,curried beans, WINE are all you need to become a member and together we can foil BAN-MAN, mwahmwahmwahmwah!!!) Secondly,i enlist the help of all members, first born son has been a very difficult boy.I have given him the alias(s) pre-pubescent-kevin-and-perry-no-i-won't-wear-my-uniform-and-i-hate-these-school-shoes- son has had Pantwoman swirling round and round in a never ending battle of wills, have been in right old state,as said child, aka, yes-i've-taken-my-inhaler-to-control-my-very-chronic-asthma-even-though-its-still-in-the-drawer-son has wheezed hisway through the week, and driven Pantwoman to eat extra curry and hobnobs!(sorry all!!) Said child has been argueing that 'it's sooooo unfair' and can he just have the chewy bar that contains nuts as he'll probably be ok, just make sure you have an epipen, very trying! And while all is going on around him AS son is sitting at the playstation oblivious to it all, stopping only to tell me about monstors inc and the nerves(dont ask me!! i just wear pants over my long johns!!) The next thing would be to tell you fellow supper-heroes is beware of big high street shop with large apple above it's sign.It is not what it seems, i too entered this shop thinking, holy Educational games!! will pick up computer games for children.IT IS NOT an apple mac shop as i thought (my excuse and im sticking to it!!!) although there are many items within that could be very useful in our fight to rid the evils that lurk stinkily everywhere, and ASM woman i know you'd love it there So as you see it has been very busy for a very bemused Pantwoman, I feel the evils of the senco are gaining power whilst we are otherwise engaged, we must stop them all, supper-heroes we have work to do.............to the Thomasmobile!!

GO FOR IT!!!! I recently applied for a taxicard with the help of my special needs social worker as idon't drive and Lewis has a lot of problems with public transport.We gotit about a week later! I was unsure however about applying for the blue badge (my partner drives) and how to go about it.I didn't know if it was considered along with my application for the taxicard.I will have to enquire i think, all these things do help to make life that little bit easier not just for the kids but us parents too! Kirstie.

Hi all you new guys, memory stinks...so one big hello and welcome! i used to be sane untill i met this lot!! joking apart this is a great site and there are so many knowledgeable people who know exactly how thing are.now... to the Batcave and beyond......... Love Kirstie.

holy I.E.P 's ....I've returned just in the nick of time!!! I have donned long johns (very nippy up here in scotland!!) and large y-fronts, worn back to front (i too indulge in beans for supper!) a neccesity to cover 2 full moons,(too many beans and hobnobs) have supper-hero total eclipse capabilities, very handy when foiling the evils that lurk everywhere Mwahmwahmwahmwah! Bra on head, a very useful thing to keep ears warm when flying with anti gravity cape also doubles as protective eye wear to guard against laser beam stares! the stilletos have been banished to a darkened corner of the Batcave and replaced with DUN DUN DUN green wellies! utility belt fully packed and rambo style ammo belt slung over shoulder, ( all bullets replaced with AA batteries, could be a long day don't you think ASM woman and needs must !!) light saber at the ready...Now we can take on the evil tormentors of the day... But first must run to Batcave ( will walk or could cause tidal waves all over the world!!) for much needed brew and hobnobs KAPOW!! have just fallen over ASM womans ' light saber' ahem! Now we are ready to fight another day... To the thomas-mobile supper-heroes! Have just spotted 'he's-absoloutley-fine-health-visitor' and 'special-needs-nonsense-just-needs-a-good-hiding-OAP! together we must cpture these beasts and bind them with the re-cycled red tape.... Are they related? Will ASM woman ever stop eating curry?!! till the next time fellow supper-heroes..............PANTWOMAN!!!!

Hello there Bev and Rhyn Essence, I'm glad you found us!! This forum has been a brilliant source of info and support for me and don't be fooled The Batcave is the best form of escapism there is!! love Kirstie.

A million thank yous to you all, and a million day release passes to you Carol! (But no beans please!!) From what i can gather everyone has to fight for something or other. Thank god for ASM woman and the caped confuser!! And i agree, a big party in the bat cave is a must, sounds like someone has been having their own party though, (rechargeables are a must!!!) ahem, well must fly guys, guess who's getting time off this weekend for good behaviour!!!! woo hoo.Have a good one all. and do try to keep the electric shock treatment to a minimum, it makes you go a bit funny, go a bit funny go a bit funny......see what i mean!! love Kirstie.xx

i was just reading through those crazy posts .they made me laugh, a real tonic, and i know i'll go back and read them again when i'm cheesed off!! i know i've posted my anxieties on CMV, but i do think he is a carbon copy of his Dad. He was (is) an alchoholic who has misused drugs and had many a ' crutch' to depend on.my son comes from a long line of alchoholics and bad tempers.From birth my son was hard work, never slept always sick bowel problems, temper tantrums like i'd never seen before (except in daddy dearest). Lewis would get into such a rage he would have a nose bleed! i remember being so frightened that he was going to be just like his Dad.that is untill at around 6 months he started rocking his head violently when going to sleep.it was so disturbing to watch, i'd touch him gently to try and bring him round, ever fearful he would do himself some harm. It was interesting to read in an earlier post that someone said their child wouldn't eat solids, neither did Lewis he was, my health visitor said a lazy eater! it's only now that these kinds of things are all fitting into place.Since then his eating habits have only regressed. The rages continued the health visitors continued to chuckle and patronise me with the 'its his age' ######, and my sanity continued to fade.I remember around the time i left his Dad i thought to myself that people would laugh if itold them Lewis is eccentric,could an 18 month old BE eccentric? certainley it seemed that way.He wouldn't accept his cup from you unless you placed it in an exact place,he'd then look at it for a minute or two then take it, or he would have to hold one shoe while you put the other one on,he would have to shut the door if anyone left, of coarse the almighty meltdown if thing didnt happen the way he liked. not much has changed on that score. As i said noone took my concerns seriously.i was on my knees,asking for help.none came. that is untill he started nursery and the staff there realised things wren't as they should be (their expression) and so the assesments began.What a relief, his differences were being aknowledged.The outcome ( after much butt kicking i have to say) was AS. The sad fact is we're still fighting to have his needs met.Hereditary,i'd say so.But i would also say that i noticed earlier this year that hallelujah he was making some progress.He was easier to deal with, he'd go to bed or in the bath without the usual all out riot.(this was with the help of visual timetables) He would even wait his turn to get on the bus without bashing some poor old dear out of the way in his quest to get to 'his' seat. that is untill he had his mmr booster.......He regressed hard and fast.My concerns were brushed under the carpet really,and there i found myself being patronised once again. it's shitty that evrything is a fight, but at least i will fight for him,i will never stop.my children are the loves of my life.I have learnt to cope and i find myself fiercley protective of them both.Who cares if none of the other kids invite Lewis to their party,their loss as he is the funniest and sweetest boy ever.we can have our own party, in the Bat cave but god help me should i forget thomas the tank!!!

Hi there Mary! glad you found this site.It has been such a great place for me to come and have a moan, find out information and to see that i'm not alone! actually i'm still finding my way around the site (am not too great with computers) But i'm sure if theres anything you need to know someone will be at hand to point you in the right direction. Kirstie.

carolj you go girl!!! well said.it is so true though.i'd love to see these penpushers sitting there making their decisions coping with the day to day things, like getting on a bus !! would i love to be a fly on the wall......!! kirstie. x

hi there everyone.my son does hate very bright light, sunshine mainly.i read the book mulicoloured mayhem by jacqui jackson and there are useful websites in the back.one being for Ian Jordan, the guy who prescribed the coloured lenses for her boys.well i was quite intrested in this as ihave a son at 11 who has dyslexic problems in maths and of coarse lewis with AS.i e-mailed him asking for info as to how i could go about getting this kind of help.He e-mailed me back to say that unfortunatley in Scotland theres no such help that he is aware of. (bummer) but he did say he was doing a lecture in Perth, scotland if that was of any interest to me.I'd love to go and learn more. this is the website, www.visualdyslexia.com. (it's not just for Dyslexia but for kids with asd).Apparently my boy dosn't like to look me in the eye because he says " it hurts me". anyway like i said to Ian Jordan i think it's time for Scotland to ' get with the programme' as it were. mmmm i feel a mission coming on........ bye for now, kirstie.

we were lucky to recieve the higher rate for personal care.but as he isn't yet 5 i was told that they can't make a decision on mobility aloowance untill then. WRONG!!! apparently they can award the higher rate when the children are 3. funnily enouhj they just don't tell you that. i had a lady from the Action group round a few days ago to go through things, playschemes, respite etc and she is going to do a check for me to ensure i'm getting the right monies.not only that she's going to write to DLA for me and suggest they start looking at awarding us the higher rate mobility.at least whatever the outcome the ball is rolling and we won't have to wait another 5 months when lew is 5, before they look at the claim.if they refuse the higher rate then she will represent us at an appeal hearing.lew has dreadful anxieties on buses, waiting in line, having a particular seat,etc etc, i'm sure you're well aware of the joys of public transport and AS. we've been thrown off many a bus.so, i know i'm rambling on a bit but i'd say definatley get help with the forms or at least the ins and outs of the system.I for one don't know how they work out who gets what but i do know their system is all wrong and very unfair.Its ridiculous that where one person will be awarded higher rate for their AS child and another family are refused the help.It needs to be sorted and regulated.what i will say to you though is keep a copy of your forms.good luck! kirstie

thanks for you're lovely post.and of coarse you didn't offend me.i think with the cmv i'm making that connection as it can affect the brain.the questions never stop do they? well i do think that hereditary factors are major, in my opinion anyway and i also think that ontop of that an mmr jag can't help.but you are so right that whatever we do it's for the best possibe reasons.i love my son and i wouldn't be without him or his wonderful ways, they make him who he is.

HERE I FIND MYSELF AGAIN,RAISING YET MORE QUESTIONS.I AM AT THE BRAIN WRACKING STAGE! I CAN'T HELP BUT WONDER ABOUT THIS.A FEW YEARS AGO I HAD A STILLBIRTH AT 38 WEEKS.THIS WAS DUE TO CMV (cyto meglovirus) I DO KNOW THAT YOU BECOME IMMUNE TO IT ONCE YOU'VE HAD IT BUT IT COMES INTO MY HEAD A LOT,COULD THERE BE ANYWAY THAT IS WHY MY SON HAS AN ASD?