Aspergers/Autism/Sensory Integration Chatter

[New Dawn]

I cant believe I just found this thread...

Well DS is at the very begining of all the testing boy o boy do they like to hit you with the $$$....

he has finish all the test now we just have to wait for the doctor to finish his hols before we get to see what it all means...

At this stage ( I think ) they are testing for ADD, Aspergers and dislexa ( sp?) Ds is my first baby and he is 9 I didnt really think he had any of these, but after the doctor expanded ADD a bit better I though well yeah maybe...

DS cant spell or write his hand eye was tested and he is below Average for his age, phyic test was below average for his age... hearing is sound depervation ( or something like that ) doesnt take in whats been said if there is alot of noise in the the room...

So now that we have done all the test can anyone tell me how long I would now have to wait for a dignonse? I just want to know if there is anything wrong with Ds... Feel bad as I kinda hope there is so that he can get the help he needs in school instead of it been just swepted under the run all the time...

Hasn't helped I know that we have moved around alot so DS has had to change schools and has to again soon but at least this time we will be able to go to the new school and show them all the reports so they would know straight away... even though I have told every school that he is behind...

Still hard for me to get my head around all of this... still doesnt feel like its happening to my boy... I just dont see it... but then again I am his mum and we all think our little darlings are just that....

well anyway I will pop back in after we have been to the doctors on the 30th and let you all know what he has ( if anything)

[maz]

OH Christy honey......I always believe that a positive comes out of a negetive. Im so happy that you have finally gotten someone who has listened to you and seen first hand what you experience every day. babe....I feel how scared you are at the moment....having been down the same road with Mateauz and those dame lumbar punctures.... thankfully you got to it in time.

How has she been reacting with the med's????? have they calmed her or hyped her up?

On a different note I went to a plant nursery on friday and the sales girl was on the spectrum ...and i never even guessed! She spotted that Wilhelm was and gave me her email addy so I could get into contact with her and some forums. She said that she controlled it with diet..eg no diary, no wheat no this no that but she was unreal!!!!! The probelm we have with diet is that Wilhelm is a white foods kid.....potatoes, cauliflower, egg chesse, milk....if i dont give it to him he wont eat so do I starve him until he eats it or just keep going?????

OH and he actually l et me cut his hair last week with scissors. I put in come conditioner into his hair so when we were cutting it it didnt get in his face...so much easier and he almsot feel asleep.

best be off...doing some spectrum cleaning atm

ETA - Tali hon....you should have your results on the 30th babe..i got mine on the spot. A mother only see's the child that we nurture and love...we dont like to see the 'bad' side so to speak. babe...kepe breathing and doing what you do best....being a mum

[New Dawn]

So sorry Christy I toltally missed your post just read the 1st page then hit post reply....

wow that really is a siliver lining in everything isnt there... Glad you are getting over the worst of it....

Thanks Maz... I know he proberly does have something ( seeing as you picked it up when we meet ) but like you said you only see the good in your kids...

Have to say though he is becoming really nasty with DD1 hits her so hard and if starting in on DD2 if she " annoys " him dont know what to do about that... So dont know if its just coz he is 9 and now a tween with hormons and all or something else....

[christy]

Don't worry Tali its all good.

Unlike you, I always saw something different about M than other kids her age that were my friends children. She's always been explosive and hard work so I always thought something was wrong. I tried to think that it was all normal, and I didn't live worrying about it. I just knew "something" wasn't right in the back of my mind. We explored different things like parenting courses, allergy testing, and sleep school, paediatric appointments.... etc etc etc. We got stuff out of all of it, but nothing that was "it". When I first read about Asperger's and Sensory Processing Disorder it was like a lightbulb for me, or a puzzle piece that just fit that question in the back of my head.

At hospital, she refused to look at, or talk to any Dr or nurse that came in the room. She screamed when they touched her. She also wouldn't eat the food at all.

I don't even want to go into what it was like to put a drip in her arm.... I actually have blocked it entirely from my mind. Maybe I was sick with worry... I can't remember, but all I know is that it was loud.

[New Dawn]

The thing with DS is he has played well with others and can be quite silly, seam a bit " young " for his age I have been just taking this as him been the oldest and only having younger sisters to play with...

It was school who has said something he plays better with the younger years than his peers coz he is now to silly for them while they been 9 have step up a bit in the things he still finds funny...

It really hit home last term when he went to camp for the first time, both BHL and I where there to see him off... we noticed that all the other kids where sitting in groups and just talking... DS would go up to them shyly ( which I am shy so didnt think to much off it ) but hen while they were talking he would get in there face and make this weird chicken sound and flap his arms Z( sound funny now that I type it ) but the other kids just looked at hi like he had two heads and to be honest I didnt blame them... Even after BHL told him that we know he is excited but maybe making a chicken sound isnt the bets way he could show it... he still did it... the hardest part was when he got on the bus... he was one of the first on sat down and not one child chose to sit next to him not one.... it broke my heart still makes me cry now... the doctor ashored me that kids like DS dont notice thing like that... the way we do, that it wouldnt have bothered him like it did me...

Just hard to see...

[~Saram~]

Christy - gosh, i'm so pleased Matilda is on the mend and wow at finding those awesome paeds at the hospital!

Tali it is so incredibly hard isn't it! We use social stories or rules to help DS out with situations like that. He responds really well to rules so we might say. Xander we don't flap our arms and make that noise when we talk to other kids or adults. You can do it when you are at home with us. You should say "hello, can I sit with you please"

this isn't perfect as he often gets stuck here and that's all he can think of even if it's not apropriate but we work the kinks out as we go. Some kids need pictures or an actual story but Ds oral comprehension is quite good if you know how to talk to him.

Maz - woohoo on making some contacts! We found DS ate more on our elimination diet then he did on normal food but we haven't done the gluten thing only dairy and all artifical colours/flavours/preservatives etc. He also reacts to amines in bananas and some meat products

[~Saram~]

I have to review Xanders IEP again before our meeting on Monday and I hate them. I know they are designed to help but everytime I read them I struggle with his "goals". Is it right to be forcing him to do things he doesn't want to do??? I mean I know the idea is to "teach" him skills so that he appears to fit in more and that the aspergers isn't as obvious but at the same time I sort of feel like this is him, Xander and his aspergers are him??? This time they want to work on his stutter by telling him to stop, think and speak slowly which is going to frustrate him and make him super mad all te time, they also want to force him to play with others interactively for 15 mins at each lunch break.

I know this is all going to help, it just feels like I'm forcing him to change who he is??? Bugger, I just hate it

Thanks for listening :-(

[christy]

Oh Sarah, IKWYM. I told the paediatrician that I didn't want to "fix" M, I just want to help her survive. I said that if we lived in Silicone Valley in the US there wouldn't be a problem because the majority of the population has Asperger's and she wouldn't have to worry about being quirky or not fitting in. She could be herself without worry....

[~Saram~]

It's so hard isn't it. DS has been to sick bay nearly every day it seems since school started as he keeps getting hurt by others kids "accidently". So I know what you mean about surviving and part of me would love to transform him into the model child so he skims through school and everyone says "autism X doesn't have autism" but them I remember this poem

HE ALWAYS

He always wanted to say things. But no one understood.
He always wanted to explain things. But no one cared.

So he drew.

Sometimes he would draw and it wasn't anything. He wanted to carve it in stone, or write it in the sky.
He would lie out on the grass, and look up in the sky, and it would only be him, and the sky, and the things inside that needed saying.

And it was after that, that he drew the picture. It was a very beautiful picture.
And when it was dark, and his eyes were closed, he could still see it.
And it was all of him, and he loved it.
When he started school, he brought it with him. Not to show anyone, just to have with him like a friend.

It was funny about school.

He sat in a square brown desk like all the other square desks. And he thought it should be red.
And his room was a square brown room. Like all of the other rooms.
And it was tight, and close, and stiff.

He hated to hold the pencil and the chalk, with his arms stiff and his feet flat on the floor, stiff, with the teacher watching and watching.
And then he had to write the numbers. And they weren't anything.
They were worse than the letters that could be something when you put them all together.
And the numbers were tight and square, and he hated the whole thing.

The teacher came and spoke to him. She told him to wear a tie like all of the other little boys.
He said he didn't like them. She said it didn't matter.

After that they drew.

And he drew all yellow, and it was the way he felt about morning, and it was beautiful.
The teacher came again and smiled down at him. What's this, she asked?
Why don't you draw something like your friend's drawing? Isn't that beautiful? It was all questions.
After that his mother bought him a tie.
And he always drew airplanes and rocket ships like everyone else.

And he threw the old picture away.

And when he lay out alone looking at the sky, it was big, and blue, and all of everything.

But he wasn't anymore.

He was square and brown inside, and his hands were stiff, and he was like everyone else.
And all the things inside him that needed saying didn't need it anymore.

It had stopped pushing.

It was crushed.

Stiff.

Like everything else.

We were given this at a staff meeting one day and it has stayed with me always and just speaks to me when I look at X

[MBP_Mum]

Hi Ladies it's just lil-o-me .. Sorry i have been MIA, but it has been a busy few months. K is not seeing an OT and also doing speech therapy, he has had an assessment by a psychologist. She has put him in the autism spectrum. We had 1st pead appointment back in April. This pead was unable to diagnose as he wasn't qualified in this field, he also said he does have signs of autism, he referred me for K to have a MRI, but that can take up to three months, i will get two weeks notice. I was then refered on to a diagnose pead, that appointment is in May (3wks away) K seems to be doing well at kindy and they are putting in an application for an aide teacher. He seems to have good days if he has a one one person with him.
I think K is getting worse with age, he now has a time issue. He has to know what time of day it is, he will ask "What time" and i have to reply with what time of day it is, be that morning time, breakfast time, shower time, lunch time, rest time, t.v time, te time, bed time etc, everything has to have a time.

So i am hoping we get some answers soon.
Thanks for letting me chat with you all. xox

[~Saram~]

MBP - DS went through a time stage there for a while, it got better when he could read the clock himself. He still stresses about how much time is left in the day and if he will be able to get things done. We found having a little plan of the day that we would just draw up like

Morning
get up
breakfast
get dressed
drive to....

I didn't use "time" in case we got held up and we also had a signal for if we needed to swap or add something. DS was in charge of the timetable and would add the swap etc.

It also helped me get organised :-) and also made me aware of how many times I would change plans like I would go out to do groceries and then decide to do x,y,z on the way home which upset DS as he assumed if I said we are going to do ... than we would do that and come home. we are now able to do the going places verbally and he is fine with the rest of the daily routine.

I have heard of the MRI for dx but haven't had one done - apparently it is to check for a type of epilepsy which triggers autism behaviours. Hope all goes well for you

[christy]

The OT got me onto boardmakers and I have one for the day which I try to do in the mornings. I'll put up the general rhythm of the day for her. And on the calender I put events like swimming, C work for the days I work etc etc so she can sort of plan ahead iykwim?

ETA girls we are back in hospital atm. Matilda had a UTI and a febrile convulsion. They did an ultrasound which showed something abnormal, but I'm waiting for the urologist to tell me how scary before I totally freak out... can't sleep though.

[maz]

BLoody nora Christy hon all my prays will be for you guys until er here good news.

I refuse to do any boarding,menu's or postings for WIlhelm! I have always argued with the 'professionals' that we dont treat Wilhelm any different to our other children. They got really ****ed with me but I am with them. i know he doesnt need them cause he is very verbal so I cue him up verbally....I also dont follow a straight routine so he cant get to comfortable with it. He needs to know things change and that its healthy to be able to do what you want when you want...not when a list tell's you to. I get so annoyed that I have to 'reprogram' him to conform to 'societies' expectations of how we as humans should behave.......really urkes me big time! Iknow when he is wigging out...I dont need a piece of paper to tell me...I dont need a stupid teacher to look down at me or talk to me like an idiot cause I AM HIS MOTHER I know how his clock ticks!!!!

I do and did repeat myself 100 times a day...and no he didnt respond to my voice in the early years but I kept repeating myself until one day 5 months after starting it he looked at me and smiled...I had gotten through. He was 3 1/2 years old. God...you know it feels like so long ago now...it was a hard time in our lives......but we got through it and here we are still alive and farting

better go to bed......tomorrow is the mothers day stall at school and he cant wait to go and buy me something.....i am so going to cry sunday

[~Saram~]

Christy hugs to you, hope it all works out OK!

Maz sounds like you have had a rough time with teachers/professionals lately :-) hope all is OK.

We had DS IEP meeting the other day - it was dreadful. he wandered off and took us 20min to find him then he had to sit in with us while we did the IEp and the damn teacher kept saying his name all the time - like we couldn't have left it out so maybe he wouldn't be reminded all the time that we were talking about him! His teacher has NO IDEA how to work with kids on the spectrum. I asked for the IEp to include use his sensory stuff, she says it isn't necessary. I also asked for him to have a time out signal so he can go somewhere "safe" if he is upset. This was after he had his lip split open after a kid kicked him until he got out from hiding under a table. I tried to explain to her that hiding under tables/making loud noises/flapping etc was his way of telling her he was stressed. She kept telling me no he's not stressed - she just didn't get it!

Last week he started running again and on the weekend I found him outside the front gate - so scary! I fear we are coming up to a major major meltdown and I am stuck as to what to do.

Anyway sorry for the whinge got a bit sidetracked. Oh going for a job with autism QLD fingers crossed!

[christy]

Oh Sarah!!! How frustrating. M's teacher has just read "The Out of Sync Child" to help herself become more aware of things... God I love her. The hospital has had heaps of issues in dealing with her.... we are in a room of 4 beds and there has been lots of noise and stuff happening, lights on late at night etc etc...

I nearly wrung one of their necks yesterday when I said we needed the OT to come as I was watching Matilda flapping and carrying on in frustration at being connected to the drip. The nurse had no idea about sensory integration and made me write it down than the play therapist came and went to the OT's office (who was away sick the past 2 days) and grabbed us a brush. Its helped.... She's still on the edge, but its helped keep us on the edge rather than messy.

[maz]

OH no Sarah!!! Maybe you need to go over this 'teachers' head. Honestly I had so many issues with WIlhelm and ive justlearnt if the teacher doesnt listen that I go straight to the principal. I demanded, not asked and things got done. If that doesnt work use the word...education department...they run as soon as you snap your fingers then.

CHristy - what the!!!! OH I hate professionals.....some are jswut the biggest know alls.....yeah they know M...they live with her dont they...grrrr

finally Wilhelm is happy to go to school He even wears long tops and pants ... its been the biggest step for us. He got out a long sleeved top today to wear under his school t-shirt...we cant get over it

[MBP_Mum]

Hi ladies and thanks for your replies, i forgot to add in my last post that twin2 (J) is now going through the assessments too, he speech is a lot better than twin 1 (K) but he is still showing signs.
So the phyc is going to assess him soon, then we will go from there.

What happens with diagnosing A. How was your child diagnosed?

ETA girls we are back in hospital atm. Matilda had a UTI and a febrile convulsion. They did an ultrasound which showed something abnormal, but I'm waiting for the urologist to tell me how scary before I totally freak out... can't sleep though.

Oh hun i am sorry to hear about this, My littlest one had a febrile convulsion late last year when we where out it was the scariest thing i have ever been through. Another twin mummy on my twin forum her little daughter was in hospital recently to because she had a UTI.
Hope all goes well. xox

P.S Does anyone know when i will stop typing in the Image verification?

[~Saram~]

Christy - can I share your teacher please :-) Hope you can get a hold of the OT. I was wondering how you were coping in there.

Maz - thanks! It is such hard situation. I have given her some books to read and we are writing a letter to the parents to explain aspergers etc and I have asked the teacher to read "all cats have aspergers" with the class as part of autism awareness month. I am hoping that once she learns a little more about what autism is she will see what she is doing.

Poor little man bought a playstation game off ebay with his pocket money - saved for ages and the bloody thing doesn't work, he was so heart broken today. On the upside he has found a 'friend' apparently they are having a play date this weekend and then he is sleeping over at her house - in her bed no less PMSL. Not sure if I approve of his choice she has always seemed like a little witch to me but he was so happy telling me he had a friend to play with today who shared her umbrella with him.

I am feeling so guilty. I just love him so much but he is driving me so batty at the moment I just want to scream.