Aspergers/Autism/Sensory Integration Chatter

[christy]

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.

I totally know that. I SO KNOW that feeling. You spend every breath trying to fight for your child & help them survive this world and then you just want to wring their necks at the same time.

Well the OT came by on Wednesday thank GOD! She brought up some fidget stuff and bubbles and sandbags to play with. Then we found out we were going to the nuclear scan and I nearly shat myself.

The nuclear scan was her laying on a small table with a huge piece of equipment over her trunk of her body, like 5 cm to spare up to her nose. She was so good. When we got there, there was a lead blanket sitting next to the machine & I grabbed it & put it over her legs. The guys there were like "Its too heavy! She'll hate it" but she went very calm and still with it on, so we left it something about Mother knows best.... So then she was taped to the table and couldn't move her trunk for 25 minutes. They let her go and then we had to go back and do it again for 20 minutes, and then another break before a 10 minute session. She was very brave, but she also stayed still. She complained at one point and tears were going down her face, but she stayed still. She had some fidgets in her hand and I was stroking her head.

The thing is... she's changed. Since she's come out of the machine...she's different. She's so much more clear?? I don't know... I feel like she changed. Its weird. Today she was absolutely beautiful. The most amazing creature in the world.... gorgeous, sweet, and lovely. She listened when I asked her not to do something, no meltdowns (unlike the scenes of late) and no fighting with Jovie. She's been atrocious with Jovie lately, screaming and pushing and horrible... today she played with her, and tickled her and chased her.... and played games to keep Jovie amused. ???? ???? WT? I don't know what is going on?? Maybe the dye they put into her changed her? Maybe strapping her to a bed with a lead blanket over her?? What happened? Before the scan she was flapping and freaking out and I couldn't handle it. I walked out of the hospital room and told the nurses I would be back in 5 minutes, I needed to go to the toilet just to get away from her for a minute.... And since the scan she's been amazing. ????? Dare I say?? Normal???? I don't know... I keep looking at her & she is looking straight at me, and smiling at me, and talking with me, not screaming, not whinging, just talking. I'm freaking out about it. DH doesn't see it yet, but I do.... will this last?? Is this just a window into what she would be like? will be like? God it freaks me out....

[~Saram~]

Christy - wow!!! We have moments of clarity like that too and they are so beautiful. Could it have been the squisy tube - Xander loves being inside small places and finds them very calming he practically lives in his body sox at the moment when he is at home even wore it in the car to school today. I hope you find out what it was and that it continues for you! Have you tried asking her what made her feel good?

[maz]

The thing is... she's changed. Since she's come out of the machine...she's different. She's so much more clear??...

We had the exact same thing happen to us when Wilhelm had a cat scan. It was like he was 'normal'......he hasnt gone back to the way he was either yes we do have our moments still but NOTHING compared towhat he was like pre scan.
I told our Pad and he said he has heard that quiet a bit from spectrum mums..so me being me I aske dif he could have another one in a years time

sammi read me some pages of that cat book.....I think I mght take a leaf out of your book Sarah and buy it so Wilhelms class can read it with him there. The kids know he's different and except him...they all seem to love him at school...he continuously gets high 5's and HI or bye Wilhelm. I remember being so scared of him starting primary school now im scaredofhim starting high school later. There is a high school in Dookie just for spectrum kids...but its $3000 a term and that is something we just cant afford

[MBP_Mum]

Took K to kindy this morning and his teacher approached me and said the speech pathologist (Kate) rang her and asked to sit in with a class session with K. The teacher then told me that Kate told her she personally thinks there is nothing wrong with K more than a speech delay. How the heck would she knows she see's him for 45 min max and has him playing games, she has seen him 5 times for 45 mins over the past 4 or so months. And she is fresh out of school. I so pee'ed off with her saying she thinks there is nothing wrong with him other than a speech delay, she doesn't live with him, she doesn't see the "real" him. She mentioned to me in our appointment on Wednesday that she doesn't think he has Autism cause he made eye contact with her twice, he made eye contact with her because he wanted what she was offering him (bubbles to blow) And yet in the same breathe she says to me i am not qualified to diagnose ..

Sorry if i have rambled on i am just so jacked off she thinks she knows K & what he is like.

[christy]

MBP_Mum... yeah we've gotten that during assessments. Just let them have their say and know what you know. What I mean is say "Um thats interesting in the short time you've spent with K that you would think that, I have had different experiences"

WOW... maybe something with nuclear imaging changes something??? Weird!!! But she's still connecting today! She's getting frustrated, but its normal kid frustration.... but she's playing games with Jovie today. The first time she's initiated playing with Jovie without me.... I got a bit teary over it too.

[maz]

And yet in the same breathe she says to me i am not qualified to diagnose ..
.

OMG that make sme so MAD!!!!!!!!!!!!

go to your gp hon and tell him what is going on......mothers gut is right...not a dame text book wanna be!!!!!

Chrissy take some pics hon....you can reflect on today for ever then

[~Saram~]

Christy and Maz - someone needs to do some sort of study in to this - I wonder what it is!!!!!!

MBP mum - hugs! We have heard that too it peeves me off so much! We even had a paed tell us that there was nothing wrong, he had some "traits" but felt my DH had more traits then DS and spent the next 10 min interrogating hubby. 3 mth later we were back with a written letter from his teacher, a report from his OT and 'luckily' he was having a horrible day. The paed couldn't tick the boxes quick enough to get us out of there. Persist, write EVERYTHING down, every strange quirk or thing that strikes you as not right and be prepared to fight. Not that we want something to be wrong but that we want acknowledgement that not everything is right and we want HELP! Why is is so hard for dr/professionals to understand that we don't want there to be something wrong that we want to help make it better/easier for them. Sorry this turned into a bit of a rant - just annoys me so much.

[MBP_Mum]

Thank you ladies for all your advice and support

Saram i have a list happening, i would love to PM it to you but i don't have PM privlages.

What annoys me is that they think they can judge them in the short time that they see them. They really have no idea.
Even when she spoke to his teacher, the teacher was thinking this Speech Thearapist has no idea.

[~Saram~]

Make sure you get the teacher to write down her observations/opinions as well that will help. Feel free to email or msn sarah@naturalparent.com.au

[gabrielslife]

@MBP_Mum

its so rude of them for being judgmental, what they really need to show is love and caring for these special angels..

[MBP_Mum]

YouTube - A Way of Describing Autism
I was sent this and thought what a uniquie way of describing autism

[christy]

CRAP day.... Crappola.... Crap Crap Crappity day. Not even M's issues.... just being a mum who has had to sit in hospital with her child for days on end & then be expected to just get back into life and be okay....

[MBP_Mum]

HUGE ((HUGS)) Christy!!
I hope things look up soon.

[christy]

Thanks... its like I've lost my ability to cope. Today I picked the girls up after work... I came home and made them their chocolate rice milks, gave them each a homemade zucchini muffin. I put on their favourite TV program... and yet they screamed for the first hour... both of them wanted everything NOW and wanted all of my undivided attention, but since 6am everything has been, get up early to shower & get dressed, pack the kids bags, get the kids fed, dressed, and in the car, to day care & school. Than go straight to work, have a full on time at work and have to leave in the middle of surgery.... because I have to go pick up kids and come home to this.

I'm feeling unappreciated, tired and exhausted. AND I still haven't come close to figuring out our budget and whether or not I can keep the appointment for Matilda's assessment in July.

[maz]

crap hon!!!!!

go and find some chocolate i feel your pain babe

I have a little man that doesnt understand why I was away last night and why i cant walk properly today. And now I can hear him in bed screaming at Nikolaus.........

[MBP_Mum]

I pray tomorrow is a better brighter day for you hun. ((HUGS))

Did anyone watch the 11th Hour show the other night?

[~Saram~]

Christy and Maz - sending Hugs your way! Christy hope you get to chill out in a nice long shower/bath. Just wrestled my little man into bed at long last - even the OT had trouble with him today - poor little man. Mind you we get to school this morning and the teacher had taken all the chairs outside for "outside learning" No warning - nothing get to school and all the chairs are in the playground - HOLY S%&( woman do you have any freaking idea!

Hoping for a brilliant today tomorrow for all our muchkins and Maz hope you are feeling better hon!

[maz]

ah i good....there is alwasy someone worse of then me......atleast I have a bum

Wilhelm has finally gone to sleep Praise the lord!

MBP - 11th hour...no please explain