hi im new and feel so alone

[treetree]

hi there my name is Teresa and im a mum with 3 kids ,lauren 10, alicia 5, brad 1, tOMORROW im going to have my daughter reassed at the child development center and im petrified ,she was suspected of having aspergus and pdla in april this year scince then they were going to moniter her on thursday morns at school and at home but this six weeks hols she has been an absolute nightmare ,she does the norm,routines has to be first ,goes in to her own world,got no sense of danger ,covers ears up when lorrys , buses go buy and sits on the floor refusing to move she throws tantrums gets frustrated loves to spin things doesnt here me when i call her but she has passed her hearing test she was a late developer at walking crawling speaking only happened after 18 mnths old ,has no concentration ,she carnt read between fact/fiction ,has obssesions,will only eat certian foods ,has trouble going to loo for phoos god the list goes on and on i had big almighty fight with sisterin law because she said nothing wrong with her and she not thick ,iknow she not thick in fact she highly intelligent and has a great iq and a very good passion for music and singing ,painting ect ijust feel as thou im on my own and get no support off anyone except my two good friends jayne and marie who can see i need help support . I do live with my partnerof 13 yrs and sometimes yes he does help but not enough i needed him to come with me tomorrow and he said he would only now he said forgot all about it and carnt get time off ,i realy peed off with him and told him to find out what more important the family or work i think i was very harsh but its only cause i petrified anyway thanks for listning , but i think he in denial something a miss cheers tree

[Kathryn]

Hi Teresa and welcome to the forum. I have a daughter too, she is 16 and was diagnosed with AS last year.

 

You'll find lots of support on here - many people will understand what you're going through, so stick around!

 

It's understandable that you feel nervous about the assessment tomorrow. I hope you get some of your questions answered at last, and that this is the first step to getting some more support for your daughter and yourself.

 

Good luck, and let us know how you get on.

 

K

[smallworld]

Hi Tree,

please don't be terrified, I quite, possibly perversely, enjoyed our time at the cdc.

Is it your 5 yr old who is being assessed ?

My 5 yr old son is exactly the same as your daughter, and so is my 9 yr old son, but more so !! (but no dx)

Don't worry about going on your own, I'm sure they know that parents have work commitments they can't get out of (I've just found out I've got to go on our yearly visit to paed on my own !!) In some ways it shows more obviously how difficult it can be with an asd child if there is only one parent.

You have good friends obviously !

Let us now more, and welcome to the site

 

wac

[KarenM]

Hi there Theresa,this forum is great it stops you feeling so alone. I have two daughters one 9 and one 11 who has aspergers syndrome she is very hard work and swears and hits me alot. I hope and think it will reduce when she has finished puberty. My husband is rubbish support sometimes too. I think alot off men are a bit to wrapped up in their jobs. Well in my family they are. From what you have said it seems highly unlikely to me that your kid doesnt have a problem. But of course i am just a mam of an kid with AS . I hope everything gos okay tommorow i thing its best to know what you are dealing with take care Karen

[Brook]

Hi Tree,

 

Welcome <'>

 

We have two boys age 3 & nearly 7, eldest dx ASD.

 

Although you'll be a bit nervous tomorrow, I'm sure you'll be fine <'>

all the best, let us all know how you get on.

 

Brook

[treetree]

hi im just glad someone replyed to me ,alicia went missing in the six weeks hols we found her after an hour and calling the police ,after searching the whole estate what she had done was go to next door thinking they had come back of hols because cars on drive gone in the house and up into annies bedroom ,while in there, my next door motherinlaw had locked up and left and she happily help herself to some nail polish and painted her nails and there beds ,one of the kids helping to find her spotted her and luckly we managed to get her out she hadnt relised what all the fuss was aboutand when i asked her if she had heard us shouting out her name she replied im not naughty i didnt want to be looked for i was that happy she was ok i burst into tears .After all had quitened down i put bradley to bed and went up to check on him as Alicia was watching tv ,she had gone into his room and openened his cot led him in to my bedroom took off all his and her clothes and they were both bouncing naked on my bed i could of cried ,she has alsounlocked the stairgate and took him to jaynes next door without my knowledge (nearly had heartattack)i carnt trust her to be in same room together even thou she loves him dearly she has put scarfes round his neck befor now.i have to have all windows locked upstairs she hits me too and is obsedd wuth saying we dont say f...ing do we when we having normall conversation at home or out aboutshe will attack you for no reason or her sister,she thinks if you die you go to baby jesus and he will mend you and you will come back.she draws on my furniture,wall,doors anything evreything she likes to pore all toiletries in the bath or wipes it all over she will peel wallpaper off my wallsif i go upstairs first i find i have to come back down so she can go first its like she has a need to be first at anything or tantrums will start things start flying clenching her fists rocking god the list goes on and on i got a diary i done and im scared to death in case i get her labled and she will end up in special school and then i feel guilty that its all my fault cause of lack of support from family so i dont know wether to show them or not. i asked my friend what she thought i should do and she said when you get their you wll know what to say all i want is some answers to why she like she is . I know alot of people say about mmr but she did honestly changed from after that

[treetree]

sorry about my punctuation and spelling not real good at that i foget please bear with me hope you can all read it

[smallworld]

Hi again,

yes your daughter does sound just like my son , although with much better speech !

You are right to go ahead with the assessment,hopefully you will get some help from this ( it may help in your battle to get a statement for daughter's education)

Let us know how you get on at cdc, and then we can help you with applying for dla/carers allowance and maybe we can help with school issues ( I say 'we' cos I know what a helpful/knowledgeable lot are on this board, I wish I'd discovered this place at the time of our son's dx)

Have a read around, and you'll find lots of parents in the same situation.

Your definitely not alone !

All the best for tomorrow, will be thinking of how you're getting along,

 

wac

Edited September 12, 2005 by waccoe

[lil_me]

Can't say much more than the lovely people who have replied have put, keep us posted on how things go tomorrow and if you need any help with anything never be afraid to ask.

 

As the other members have said, you are definately not alone best of luck with tomorrow

[CarerQuie]

Try not to be afraid.I hope that you get some answers tomorrow.We've all been through assessments and have lived to tell the tale!!!We'll be with you all the way.xx

[UltraMum]

Hi Treetree (Teresa)

 

Hope all goes well for you and your daughter at the assessment.

Lots of support on here for any questions.

[tracey]

Hi tree

Just read your post you could have been talking about my own daughter

at that age

At least you are getting her assesed I didnt until she was 10, 13 when diagnosed

with a form of asd

Wish Id have done more about it when she was little

Your doing the right thing

Tracey

[annie]

Hi Teresa,

 

Just wishing you good luck for tomorrow. We're all here for you.

 

Annie

<'>

[big mamma]

Hi Teresa,

 

you're doing exactly the right thing in going for an assessment tomorrow - things can only get better from here.

[lynyona]

hi teresa ive got a son now 19 dx asd just before his 18th birthday.good luck for tomorrow come back ad let us all know how it went.Theres always a listening ear to share e xperiences advice or just to listen when you are having a rant and i must admit i often do. lynn

[bid]

Hi

 

If you can, write down all your concerns about your daughter, and take a couple of copies with you tomorrow to give to the professionals you will meet. Then you won't worry that you might leave anything out.

 

It's a good idea to group your worries under headings, like 'Social Interaction', 'Play', 'School', 'Speech and Language', 'Family Life', etc. Then use bullet points for each thing that worries you, under each heading, so that it's easy to read.

 

Is there a friend or relative who could go with you, just for moral support, and perhaps to take notes of what the professionals say, in case you forget??

 

Good luck, and let us know how yoy get on <'>

 

Bid

[darky]

hi there ((((hugs)))) <'> to you. your daughter sounds exactly like my daughter was. A NIGHTMARE! my daughter has been diagnosed with adhd and pervasive development disorder not otherwise described. she is on medication for her attention defict and that has helped so much. sometimes the "autism" behaviour is very difficult to live with too but things are much better than they were before! good luck with your appointment and take no notice of people who doubt her difficulties, they dont have to live with her.!

[nettie]

hi tree

like you a felt very alone and friends and family didn't understand. I'm new to this site but already I feel among friends, I've had some great advice which will help me.

 

Good luck for tomorrow. Take bids adice and try and write things down and give them a copy. My mind used to go blank and I couldn't concentrate because the twins were usually causing havoc and I never got to say everything I wanted to.

you have to wait so long for these appointments so you need to tell them everything.

 

You are doing the right thing getting your daughter assessed...the earlier the better .

 

let us know how it went . we'll be thinking of you.

 

nettie

[treetree]

hi there thanks for all the support you guys have give me i really needed that,well i went i gave them my diary and it all went well i ended up taking my mother in law basically just to open her eyes and make her realize how hard it has been they offered me respite care and i burst in to tears and said i didnt want that were strangers looked after her.i do get dla high rate and low rate mob /cares allowance they talked about direct payment and have refered her to chattom house so they can reacess her and to get a proper diagnosis ,one good thing happened today well its not good but alicia opened the car door while his mum was driving us home (put it this way i got fast reflexes ha i need them)but the look on her face now shows me she ****herself and didnt relize she could do such a thing

[Kathryn]

Hi Teresa,

 

I'm glad the appointment went OK today, and it sounds as though they are taking your concerns seriously - sometimes bursting into tears will make the professionals see what stress you're under and do something.

 

Taking your mother in law was a good move - (I might try that one myself. )

 

I hope you're feeling a bit more relaxed than you were this time yesterday and that you don't have to wait too long for the reassessment.

 

Take care, and carry on posting here, there is always someone who can answer questions.

 

K

[smallworld]

Sounds like a good result (especially taking your MIL, what an idea !!)

Hopefully you're on the right path now for a proper assessment to take place.

Good Luck,

wac

[UltraMum]

Glad it went well - loved the bit about the MIL!

 

Hope you soon get the help you need.

[treetree]

recieved a letter today that they are assessing alicia on tues at school ,thurs at home ( no tbad to say the waiting list was between 12 and 18 months )then a week on thurs ti have to go to the child assesment to discuss there results does anyone know what happens at thease assesments ive had to fill in a questionaire relating back to her birth and was there any complications /was she a good baby /when did she talk/crawl/walk ect... Iask the lady on the phone would they be giving me a diagqqnosis when i go to the cd center and she told me to take someone with her as if they do give me diagnosis its too much info to take in. The update on alicia is she is still the same andlast night i could of cried for her ,she had been watching barney upstairs and came downstairs heartbroken ,Iasked her what the matter was and she replied "why does Barneyplay with the little boys and girls and never plays with me"and cried and cried we ended up having to say we would write him a letter and tell him she was special and would like him to play.She is still obssessed with the little men from happyland and only plays with them Any idears for christmas were stuck!!!!!

[smiley]

Hiya Teetree,

 

I'm so pleased your getting somewhere now. I hope the assesments go well. <'>

 

No advice on Barney i'm afraid - into bionicles and transformers here.. !!

Edited October 26, 2005 by smileymab

[treetree]

cheers dont know how scared ill be when going for results am expecting them to confirm my thoughts thou as know theres something wrong ,but then again ill probably feel relived ha ha been waiting for this for long time ,dont know if having her re assessed has made them push the assesment through quicker but im pleased .

[lisann]

Hi tree

 

Good luck with the assesment we had Char done last year and haven't looked back since.He's age 4 now and has ASD the child development centre near us where great and he got a diagnosis very quickly.We where releived because it explained his unusual behaviour.

 

Char too likes being naked and has spent all today in just his pants stateing

 

" I not cold" How he works is behond me but I wouldn't change him for the world.

 

Good luck again let us know how you get on

 

Lisa x

[kirstie]

Hi teresa,

I think everyone can identify with everything you've said about your little girl. I know that when Lewis was born he was hard work from the off and i hadn't even heard of Aspergers. Now i feel like an expert on it! My boy was diagnosed at 4 and it's the best thing to have happened for us. I think like in a lot of places you can't access a lot of the supports available (I.E respite, in my area we have Lothian autistic society, Occupational therapy etc etc) untill you have a diagnosis. It also helped me to understand my sons behaviours and how best help him deal with the world as he sees it. I was totally baffled and at my wits end with him, and when you said you have to come back down the stairs so you're daughter can go first or all hell breaks loose, i must admit i smiled at that. Lewis would have an absoloute meltdown if anyone got out of the nursery gates first or on the bus first or if you pressed the button for the green man firast, we would have to cross back over and start again or holy murder for at least half an hour. But the good news is that there are ways to help with such situations. Has anyone mentioned social stories to you yet? They have helped no end with loads of things, like from not having to be first and waiting your turn to going to the dentist. I was not convinced when Lewis's speech therapist suggested them and it took a while as his behaviours were so entrenched but persevere and it will pay off, or at least ease things alittle bit for you both.

At the moment Lewis is learning about stranger danger via these stories as he has no sense of danger whether it's strangers or crossing the road.

The good news is that it's not all doom and gloom, it will get better and i NEVER thought i'd say that!!!

You're doing great and you really are doing the right thing by her.

Everyone here will help you find your way as we all know how daunting it is.

Oh by the way great idea taking the mother in law!!!

Hope the assessments go well (sounds strange thing to say, but you know what i mean...) Let us know.

Take care

Love Kirstie <'>

[treetree]

hi thanks for the above info ,ive never heard of thease social stories where can i get information for them from thease seem like a really good idear thanks Teresa

[nellie]

Hi Teresa,

 

Good luck with the assessment.

 

You can find information on Social Stories here.

http://www.thegraycenter.org/socialstories.asp?catID=3

 

Nellie xx

[Minxygal]

Yes good luck with the assessment hun. I can relate to the Barney thing, my son was similar but with him it was Noddy, it does get better, although he is now 15 and still gets shirty if he can't get his daily fix of Noddy. Thankfully it's no longer on the TV at before 6 in the morning. xx

[kirstie]

The social stories can be done by a speech nd language therapist or most professionals working with your daughter. It's worth atry, but also knowing that our kids don't display certain behaviours for no reason. It might seem like it to us but there is always a reason. I wish that more of Lewis's teachers at nursery had remembered that at times. Although we got the diagnosis process up and running pretty quickly they were sometimes very out of their depth with my boy. As hard as his Occupational therapist would try and tell them he has sensory integration dysfunction (hated bright light loud noises clothes messy arts and crafts) and wearing his coat to go outside to play was only causing him distress and discomfort so they shouldn't force the issue (unless it was pouring down in which case they'd be inside....) but they still would saying " It can't be one rule for one... blah blah" and they would say he was trying to flaunt the nursery rules by having a total freakout. He really wasn't just being naughty. Do you see what i mean? The more you come to understand what is going on with your daughter the more you'll see there is always a reason for her behaviours (even if it is headbutting you in the middle of Asda!! it could be its too loud or the lights are too bright. Believe me i've been there!!!! )

Anyway thats what we're here for, to help each other out.

Take care,

Love Kirstie.

[Guest flutter]

hey tree, welcome

i have a newly diagnosed 11 year old daughter

if it hadn't been for this place i dont know

they have great advice, make me larf and cry

soo glad i have found here and hope you will be too

C xxx <'>

[treetree]

ah peace at last ,they all in bed now i can relax had a very intresting conversation about crabs lol ,had quite a good day today mymum came up today she said to me dont you ever sit down it would drive me mad getting up and down all the time she also commented on how vacant alicia was when speaking to her and was quite amused when she was having dinner that alicia had made me take of the kettuchup<speltwrong? only to reapply then we went to the shop and she said i can now understand why you dont go out much its ###### hard work lol im shattered now going to chill out and read some other posts thanks for the link on social stories was great help

[Malika]

Hi

 

Teresa your little one really reminded me of my son who was having a tantrum every time his sister would get through the door before him , things got better when she started high school because they are not coming back at the same time any more . Mind he is all right now this was 3 /4 years ago.

Hope you will get some time to sit down with a nice hot drink to cheer you up.

 

Take care. <'> <'> <'>

 

Malika.

[treetree]

im ready for a night out were i can be me and socialise had a tantrum today because smarteenies went of the tv and had to explain why i couldntjust put it bk on need sky digital i think lol

[smiley]

Enjoy you noght out - sound like you deserve it

 

.........Do you think we could blag Sky Plus from social services??......

[treetree]

i wish god woulnt that be heaven should of asked family fund try that next year do you know i asked alicia earlier what she would like for christmas "a dora birthday cake and some balloons"was her reply

[smiley]

Awww bless her!

 

M said 'Presents with red paper'......hmmm, focusing on the wrong bit of the preessie me thinks.....

[elaine1]

aww good luck with it all. I was in pretty much the same situation with Tom, took a move of docs to get him sorted, and i think dh was in denial too.

Tom is 12 now and it seems a long time ago, but i still remeber the overwhelming feeling of lonliness.

wish i had this group then, i hope u get yr answers and continue to be strong for yr daughters sake.

ther is help out there, you have to find it though and there are plenty of ppl in here who have 'been there and done that'.

 

thinking of your family

[treetree]

was sat watching her play with her misters tonight and decided i was going to record what she was doing eg lining them up putting them in to groups all co-ordinated then linining them up coming from one room to another so i could show the people who are coming to asses her on thurs at our house so they could see what she did evreyday and then i guess after 45 mis they will probably tell me shes a normal 5 year old child well see it really annoys me how they can just judge for that lenght of time and make you feel that its all in your head well at the moment its peaceful so time to chill and go to bed i think ready for what tommorrow brings