Aspergers/Autism/Sensory Integration Chatter #2

[maz]

sorry ive been AWOL..had alot of issues here lately...mainly me and feeling down about the lack of understanding from people all around atm and feeling like im a badparent..you know the drill

SO for a bit of therapy and to get it out and have osme people read and understand what ticks in MY head I started a journal about our life with autsim. Its up in this section and although I cry when I post, its good...its helping me inside...helping me to feel a sort of calm if you like.

Best achievement in th eloast month...Wilhelm came up to my, grabbed my face with both of his hands and said...Mum I really love you you know...... it was right after I had had a massive melt down over things and I jsut felt so selfish...

ok will be prompting myself not to be such a tight butt and make more of an effort in coming in here

[lestyrox]

Hi everyone, sorry i haven't popped my head in in a while, how is everyone? i'm having major tantrum issues with Ethan and its really getting me down and i'm feeling really depressed.

I'm getting so tired of being screamed at all day everyday How much screaming can one person take?
This whole autism thing has got me feeling really alone and isolated. I feel like there's no one to talk to. The only person that understands is my hubby and even then he's getting sick of hearing about it. He's a solutions kind of guy and keeps telling me to 'call someone' but who? Is there a super nanny for autistic kids? Because if so send her my way!
I'm finding it really hard to discipline Ethan, without exagerating he is throwing tantrumes everytime i say no which is pretty much every 10 minutes. Today he had a monumental tantrum in the backyard because he lost his 'plug'. (bloody plug obsession, i feel like rounding up every plug in the house and burning them) His plug happened to be a tiny peice of red plastic he dug out of the ground (he pretends everything is a plug)and when he couldn't find it he went crazy...throwing himself on the ground, screaming, hitting himslef. so i took him upstairs (by this time the screaming had woken his baby brother up ) tried to put him in the shower because he was all muddy. Well i physically had to hold him under the water while he thrashed about. Then once he calmed down a little i tried to give him lunch and of course he went balistic again because his pancake was too big..he wanted two little pancakes, not one big one. And then he went crazy because he wanted cordial instead of water. Finally i got him into bed for his afternoon nap and then he started going nuts because he wanted a red ball to take to bed with him (which i couldn't find) and then he went crazy again because i tried to tuck him in and he wanted to be untucked.
Finally i just screamed at him to go to sleep and even then he only stopped screaming for a minute only to start back up again. I feel like i have no authority over him, i actually feel like i'm wrapped around his little finger. I physically cringe everytime i have to say no to something because i know a tantrum is on its way and what sux is that half the time i have to give in becasue if i don't he screeches so loudly it wakes his brother up no matter where he is in the house and its easier to just give in than deal with both kids screaming.

I'm really feeling lost and so frustrated. How do i discipline him? I try naughty corner/time out but he gets his head so stuck on whatever it is he wants that he will just keep repeating it over and over all the while getting more and more upset. And if i try and explain to him why he's in time out i can't get a word in, he just repeats and repeats and the tantrum starts again. My Dh has some luck with him, but he is a big guy and is quite intimidating when he's angry. He usually just throws him in his room and walks away. This works but the pay off is that Ethan hardly wants anything to do with Dh and he will scream at him if dh trys to show him any affection. I don't want that, i treasure Ethan's cuddles but what do i do?

I'm also feeling really dissappointed because i've had Ethan on the GFCF diet for a month now and i was really hoping to see an improvement in his temperament. I saw subtle improvements the first few days and was really hopeful but that all went out the window and to be honest i think his temper is worse. I don't know if its the diet or something else but his tantrums are off the chart.

I'm really hanging out for his appointment with the speech pathologist and peadiatrician next month. I'm praying someone can give me some answers and advice because i don't know how much more screaming i can deal with. I don't think we'll get a diagnosis then and there, from reading other posts it seems like its a loooong road of appointments and different specialists to get a formal diagnosis.

What do you guys do? How do you deal with the tantrums? what strategies have you found useful? I'm desperate and any help is muuuuuuch appreciated. I love Ethan soooooo much but right now i'm really not enjoying motherhood. Most days i just feel like running away but my heart wont let me and of course i never would. I feel like such a failure and bad mummy

Sorry for the vent. Just had to get it out.

[christy]

oh lestyrox ... have you read Maz's and my stories? We've been posting our journey in this area... its amazing when you read about how other mum's have to cope with the screaming and the physical attacks you sometimes have to endure.

The biggest thing that helps me is knowing there are others out there who endure it as well. You are in Taree?? Have you got connected with the Aspect group up there? There is a "building blocks" group up in that area I think?? Have a google at Aspect or Autism Australia and find out if there are parenting groups or something up there.

We are going to get slotted in a parenting group straight away, just to have others who are living this way and with the screaming and watching their children hurt themselves. Its a different type of... living... its not living really, its existing.

Somedays we sit in the corner and cry next to them... or we take turns going away overnight for a break.... we have to make having a break a priority and get her used to it so we don't have those terrible repurcussions afterwards.

[lestyrox]

Thanks Christy, you're right, i'm not alone. Thank you its nice to know that i'm not the only one to feel this way or live with these stressed sometimes it all just gets so overwhelming, i'm sure you know how it feels.

I'm not in Taree anymore..i really should change that We moved to Grafton a few months ago. I've contacted Coffs Caost Autisms and have been chatting with a lovely lady there. They have some great get togethers which look like alot of fun. Its a bit hard to drive the hour over to coffs with the kids so young but its nice to know its there for the future. Do you think there would be an Aspect group here in Grafton? I'm not familiar with Aspect, is it a country wide group?

better go, Ethan is screaming about something *sigh*.

[christy]

So we just got home from Matilda's ADOS assessment and it hhowed she has low functioning Asperger's. Its funny, years of searching for answers... asking questions, getting information from reading and other parents.... all this work. The testing was done today and the psychologist is convinced Matilda has low functioning Asperger's. She said she's not necessarily sure if the results will show low functioning Asperger's or high functioning Autism, but she is leaning towards the low functioning Asperger's.

I was really really norti and gave her a glass of apple juice on our way to the assessment I know it sets her off, but she was having such a good morning, and I was worried that we'd get there & she's be a perfect well behaved child. ( Maz, glad you gave me the hint too!) We also stopped by a Coles to just make sure she wasn't going too well. So she may have gotten high functioning Asperger's if her mind wasn't so scrambled....

I'm relieved strangely enough.... I didn't want a label for a while there, but the behaviour has been so atrocious... it will be good to have some help financially.

[maz]

Oh hon I hope your winding down now. You'll get lots of help with funding for things now expecially with the low functioning label. I hope you get your paper work through very soon so you can get the ball rolling for some financial assistance too.

Breath now hon.....its done. Looking up and beyond now

[christy]

Funnily enough Maz, I feel like throwing a party... if anyone would want to hang out in our mess of a screaming house I have asked Dh to grab some bubbles on his way home for our after party celebrations