how many times will they diagnoise and undiagnose ?

[vondahue]

hi all,

 

i've not needed to post for a while as i thought we was finally getting somewhere but boy was i wrong,

my daughter (8yrs old) has shown signs of something wrong since well as a baby really, she was prem by 10wks. by her birth age 9months so in abilities equal to a 7 month she hated people its hard to explain but she was unlike any other child i have ever known, by 18month i thought adhd or something but i'd never heard of AS then my knowledge was limited , i struggled on through yrs of trouble with her, play group for special needs to main stream taking her out but her social issues remained the same.

where we live there is a large open green with nice cafe and kids toys my son now 2 is up and off but she wouldnt even look at toys let alone get out the pushchair, it seemed she was only ever ok with someone if they put a huge amount of effort into playing she'd finally come around. by 4 1/-5 she was exceptionally difficult with social issues and mutism and toilet issues along with lots of other AS traits, everyday was hell i cried every night as i couldnt cope, then as she was in nappies due to serious soiling problems and schools wouldnt take her, i had the health care trying to help by this time, i put a post up on a forum and someone indicated she sounded like she had AS so i looked it up brought a book and everything was her all over, the health people refered us to stay in a special unit for a wk where they would do all the assesments and toilet train her using stickers, hahaha what a joke that was,

i did ask the nurse what they referal was actually for and it was aspergers i'd not even mentioned my thoughts yet they thought she could!!! anyways we tried sitting her on the loo, i had to walk away getting the nurses to take over hoping she would for them, we came home no better off, i had done everything blumin super nanny would and some and i couldnt get her to . it caused lots of problems with my husband (step dad) as he always said it was just her doing it cos she wanted to, anyway while there we had psyc and motor skills and all sorts of tests, the psychologist said she not AS she answered al her questions or something, so they just refered her for art therepy, well to her it was just 40 min of drawing her fav thing the rest ment nothing, then time for school she had to go now or i would be in trouble, by this time i'd moved out left my husbands home i always felt it was too much for her there with lots of step brother sisters and big family well 2 brother 2 sister but most stayed at there nan's and the nan and pranpa but she would never talk to any of them , as well as problems i'd had, then 3 days after we moved that was it no more nappies, toilet prob solved, which totally shocked me, was it her finally getting me to herself what she wanted so she stopped was it just anxiety or what ? school was hard for months she came home white and pasty looking her behavoiur still the same,

6 months later we moved back to where we lived when she was young, near her granparents whom she always visited alot, my husband and i were back together but the day he handed his keysin for the old house he was murdered, yes one big mass shock there our son was 7 months to the day, my daughter just said oh, looked at my son and said your dads dead, it was the aftermath that effected her more as noone helped out not even her father so she heard all the details from the police and my 6 hours of calls helping to cope with them everything the step children it was bad so i guess you can explain her behaviour as something to do with that but she got over it very quick, but i notice if i'm stressed or tired she is worse, if 'm ill god forbid she has no care in the world for how i feel and usually kicks off some how, she couldnt even deal with one day i decided to stay in my pj's that threw her mind,

i have watched managed and tried to deal with her, like if i chat to someone in a shop she gets belly ache if someone drives my car with us she gets sick if i take her somewhere she dont know she kicks up or gets sick, so tactics in place dealing with the things like repetative reassurances , well i really did get to the point where i felt unsure of what was going on with her but knew she needed some kind of help for her problems so off we went for a referal and yes diagnosed with AS she showed her true self wasnt all my say so , so we come home and months later we get a visit off a psychologist, daughter has tummy ache and goes upstairs so i explain things but i made the mistake on talking to much about how i find her hard to cope with we was then told daughter is just controlling me and my life and nothing wrong with her it was all what we had been through dispite me knowing when she was a baby,

so i mail my pead and explained i wasnt happy at all so we then saw a specialist on autism and AS this time i sent daughter to school i chatted with this lady done the check list which she was over the minium number so clear she had something along the AS line , she then went to school to observe, school have told me she does great, however this woman saw different saying she could see she struggles and had low motor tone or something, so there we was with another yes so 2 AS 1 home life.

we then had to see speech language woman, now daughter is extremly bright always been advanced its her social skills that are the issue and other bits, so this woman sits reading things while daughter points to right picture , then no she cant has AS as she was too good at that, so i said you put her in a different enviroment or whatever you'd see she is, so we left and thats that they were having a meeting so maybe soon we'll here something, but apparently she has to show AS in all 3 test , i know girls are harder but its like they dont listen and they blame parents and read a few books think they know it al they should try living with my daughter at her worst then tell me she's fine.

although i do have her balanced at the mo with no major out burst or issues but that is because everyday is the same we dont go out and no one comes to the house al the things that make her have major funnies are out and so now its just the obsessive eating or deafness and lack of ability to understand intructions so cope with so quiet right now but not way to live a life but we do what we have to for our kids, now i'm wondering what on earth is going to happen i need help support for her to understand as best she can about social rules or something, where we live we have first school til age 9 then middle school til 13 the college, i'm worried that going to middle school next yr is gonna do so damage she could easy be a target for bullies, and its more like secondary(senior) school and i dont know if she'll cope with the older kids rushing about hoping she will be ok but i know her auntie and her dad was bullied very badly and they both have serious social issues, i never understood why after 6 yrs her dad couldnt talk to me and by that i mean literally, he never walked in form work say hi how are you oh my day been.... he may look at his shoes and grunt hi, he never grasped things if you asked multiple tasks the usual so , wow there you have my daughter history , i just have no idea whats wrong why she is the way she is and feeling at the end of the rd with not getting straight answers or home life being blamed by people who read a book or two. is my daughter AS or just controlling my life? well she done a good job if she is i've dropped everything to make her happy. about a ys after losing my husband a fella was interested i wasnt so sure but we had coffee and he came to the house alot but she was so bad and its like she wont get better the longer she knows someone she gets worse which breaks me like with my husband, she was ok for a few weeks but over the yrs she got worse and worse, to then maybe be chatting non stop for an hour to him then he'd get up go kitchen come back to her and asked what she'd like for dinner and she was blank mute and refused to answer? hows that work usually kids warm to people but she is like this with frinds too if they visit too much i guess you never know if you'll get a hello or a dirty look from her, ? i just know she has exhausted me, and so have the medical people ............................

 

any replies welcome i think i just needed to get that off my chest and see if anyone else is or has had same probs x

[pingu]

hi vondahue.

 

Wow you've been through the mill a fair bit, i was reading your post - feeling your frustration. and wondering if i had anything to say that would make it all make sense, but intruth i havent, apart from the fact that your daughter sounds like she has AS from what you've descibed.. saying that my son has AS but also shows a lot of the signs of PDA which is confusing me so much at the moment so i understand your confusion at least. have you ever thought of trying to secretly film her behaviour? just a thought as thats the way we got our son disgnosed. the professionals thought it was us that were making him unable to follow the social rules (blame the parents) until we filmed him lining up the garden chairs and repetitivly carrying out actions that were not 'normal play' once i had the evidence in my palm i stomped into the doctors and asked them to watch it - he was disgnosed soon after. but if anyone comes into the house he acts totally different. but at least on the tape we got an opportunity to show what he was like in his envioronment ( in a place he feels at hom)

 

not sure if any of that has helped. i'm sure someone else may be able to give you a more coherant reply, but if you have any questions or just need to vent then you are welcome to PM me.

 

pingu. <'>

[vondahue]

thanks that at least helps me feel that although people even family who allow her behaviour or wash over it with excuses yet think i make things bigger or well really make me feel like its just me or i'm going mad , over the yrs i have watched her close i guess monitored behaviour and made mental notes to of been able to reduce the problems by keeping life simple with out adding in things with out notice or having people around for longer than a few hours, its not much of a life but we are managing but i know this is just a quiet stage and when life changes as it does things will go back to being difficult, we live in a 2 bed house and my son is in with me still as i darent make them share for fear of her out bursts or lack of sence to damger or being able to think in front not sure how much a 8 yr old should be capable of but i 'm scared to move house for knowing the trouble will start as she dont do change, and as i cope on my own its anything to make life managable right now, i will def keep that in mind about recording it when the next out burst happens, just incase once these people have had there meeting and decided i may well need it.

on a different note i have managed to get DLA middle rate care for her i thought maybe low rate although i spent 3 hours filling the form out and trying to word it right as i know one wrong phrase through rushing an explaination can been seen as not the help or support you need in there eyes, but i was refused so i called them up and this woman i talked to was good , i explained different things about her behaviour and the things i had to do even down to everyday making sure she goes to the toilet other wise she wont and then those toilet issues are back, and she said she had wrote it down and would chat to someone, a few weeks later i found out i had it which is something as i know its a lottery and very hard to get.

also she will be actually spending more than a few hours with her dad, he cant cope with her, but i said he needs to have her for 3 days at least at his flat not his mums so it will be interesting to see how he copes if he sees any of the problems too.

does anyone find that when you explain your childs behavoiur everyone says oh by mine does that or kids do that, and its so frustrating cos you think yes but do they do 20 things in an afternoon with added extras and obsessivness or mass over te top out bursts, the best was when my husband died nothing not a tear not a care yet she couldnt get her tv on and i was on the phone down stairs and i honestly thought she was dying the hysterical cry i couldnt believe that, or when my son fell down the steps i panic'd he cried and she came down and stood right in front and just said can you do my button up not poor boy you ok is he ok just can you do my button which i know full well she can do. or when i had stomach bug so did my son she woke up me on sofa head in a bowl and she throws the biggest fit ever cos i said no school as you will prob be ill and pass it on, well nan had to come and get her cos i couldnt cope with that, she got sent home sick that afternoon then next day she was fine, she always recovers very quick its like she dont know when to stop eating she dont know or feel sickness much but is she hasher foot hurting she will stay awake for hours til gone 11pm then come in crying and unless she gets meds she will not stop there are lots of obsessions she has is that all linked just her nan and dad and auntie are all fussy stressy cant cope or anxious nan is big time ocd , guess she could have a mix of them all , poor kid! any more info or just your own experiences will help as its just great to listen and write knowing i'm not insane!

[pingu]

does anyone find that when you explain your childs behavoiur everyone says oh by mine does that or kids do that, and its so frustrating

 

yes i find this really really annoying. and extreme emotion is something the parents of "normal" teenagers go through every day (not)

 

you have been through a hard time hun, give yourself some credit for getting this far.. i will write more later when i have put kieran and his bear (patchy) to bed