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thread: Aspergers/Autism/Sensory Integration Chatter #2

  1. #73
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    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.

  2. #74

    Dec 2005
    not with crazy people
    8,023

    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

  3. #75
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    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

  4. #76

    Dec 2005
    not with crazy people
    8,023

    im in give me 9 hours though to get there though

  5. #77
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    Hahahahahahaha!!!! You are always welcome.... (edited out norti bit)
    Last edited by christy; July 24th, 2009 at 04:44 PM.

  6. #78

    Dec 2005
    not with crazy people
    8,023

    Hahahahahahaha!!!! You are always welcome.... we even have mattresses in the garage (smacks wrist....) I'll delete that in a second...
    can we use a tarp for a blanket hahahahhahah

    Now I gotta say something........I havent posted in here in a while cause I know we all go through hard times with our kids I think we have to talk about the great times to. We live it enough and although its theraputic to 'spill' we have to see the sunny side and share the good times too . I dont want to just come in here and use this thread for a punching bag so from now on I will limit my sob's for once a week and will share funnies with you (well if I cant pull the **** out of our situation who will)

    Wilhelm gets into the car tonight....a big lightening bolt with red texture scribbled on his forehead.

    What's that in aid of Mr? I ask

    It was a bad lunch time mum.....Noah kicked me in the groin and Rhianna was my hero and touched me here (pointing at forehead) and fixed my sore groin...I told NOah ow my groin..im closed now. the end

    if only touching jed on the forehead would fix his groin i'd be right

  7. #79
    Registered User

    Jan 2005
    Down by the ocean
    6,110

    Maz! Wilhelm is so cute!

    Christy when M was doing his CARS test he was such a well behaved angel. He even sat on the ped's lap to watch what he was typing on the laptop (which turned out to be another trait ie no sense of personal space or boundries ). I understand you not wanting Matilda to be presenting her best for the day.
    Last edited by ~Raven~; December 29th, 2009 at 07:18 AM.

  8. #80
    BellyBelly Member

    Mar 2006
    Getting to know Brisbane all over again
    2,047

    Congrats Christy on your diagnosis!!! Woohoo I'm so pleased you have finally got somewhere! We threw a party when Xanny got his diagnosis too - it was such a great relief to have somewhere to "go to" now it was like a door was opened and we could look through the "autism door" and finally understand him. It was alsod a weight off us as we could now hold our heads up as parents and say -no it's not that we are bad parents he just preceives things differently/reacts to situations differently - he has Aspergers.

    There is a link I was going to send you the other day from the sue larkey website on Aspergers and Girls _I'll see if I can hunt it down and check out the book - All Cats have Aspergers. Xander loves it and he quite often tells kids at school he has Aspergers and he sees things differently to them.

    Maz - LOL at Wilhelm - what a gorgeous little boy.

    We had our first SUCESSFUL play date yesterday! We have many many many unsucessful ones which have ended in a meltdown but this one was great! it was a girl - which I think made a difference - and we planned out what we would do before she came, he wanted to show her his DS and they wanted to do science experiemnts. DS and i did them before hand so he knew what he would be doing. She was even a bit late - and although he was pretty hyped when she arrived he settled down pretty quickly! A few times he forgot she was there and we had to remind him but she was quite happy playing with the cats or Ari and didn't seem bothered by his withdrawal. i was on such a high yesterday we celebrated and got pizza for dinner - what an awesome day!

  9. #81
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    Saram, can you describe the playdate meltdowns for me if you don't mind? I'm nearly too scared to have playdates cos DS goes off his rocker at the end of it (and sometimes during).

    Social stuff can be hard....

    I'm still working things out - these threads are really helpful xoxoxoxo

  10. #82

    Dec 2005
    not with crazy people
    8,023

    Lu babe...sounds like a melt down to me we have hitting, crying...and now friggen eye rolling...roling to the extent that all we see are eye whites oh and wet beds...sometimes it can happen there and then but more then likely the melt downs here are 24 hours after wards

    sarah that is friggen awesome!!!!!! I am so happy for you hon and jealous no play dates here yet...still get to nervous about them. So happy that he was relaxed with her..friggen awesome!!!!

    Wehad Chrissy here last week....she came in and sat down...(Wilhelm had been prepreped for only a day beforehand)..he waltz up to her, sits down next to her and says
    Hi whats your name
    I could have friggen cried...he has NEVER asked that before.....and ofcourse she had a grin from ear to ear after I told her. although he did crack the sad's with me cause he thought he was going to see his 'SAM' and mason and angus on saturday but I was way to sick to drive so he missed out....he didnt let me live it down either..so a trip down south will be in order soon me thinks

  11. #83
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    Oh Jeez, having a crapola day today. He just doesn't LET UP.

    I still can't work out if DS just has a hair trigger temper combined with general (extreme) naughtiness or if it's something more.

    Last playdate, dp picked him up and the mum was just saying how wonderfully behaved they both were when ds noticed dp there and just went POSTAL. Screaming abuse and hitting, running off and declaring dp an a hole....

    He never, ever stops talking. If something doesn't go his way it's DEF CON 10, freakin screaming, hitting, threatening blah blah.
    dp hates taking him to the shops cos he is such an embarrassment, but I find I can handle it because I handle him really calmly, but it's very tiring having to assess every potential 'hazard' so I can jump in and walk/distract him through it.
    He has always been pretty good for both grandparents, but still has meltdowns here and there. They both keep him pretty busy though.

    He has some quirks - we all MUST watch the very beginning of The Simpsons every time it comes on (DAMN you Foxtel). If we are all not present in the room and watching DEF CON 10. Before then we all had to watch the end of Sesame Street to see the train coming through the tunnel. He really hates the strangest things - Sesame Street, Yo Gabba Gabba and Pinky Doo - GET IT OFF, GET IT OFF!!!!! Meltdown.

    I hate it when people in the street catch his eye or makes a comment. He takes it as negative if people smile at him and often yells at them. I have to reassure him no one is laughing at him.

    And he won't leave his poor bloody sister alone. He seems hell bent on upsetting her, hurting her and tormenting her. I can't leave them alone together. Sometimes they play beautifully. I suppose that's because Beth just does what he tells her to do.

    Today - he mashed flypaper in her hair

    It's really hard to keep you cool, allll daaaay looong

    I dunno, I go from thinking I am really on his level, to worrying that I'm not providing the right environment for him dammit.

  12. #84
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    Lulu... once again, all of this behaviour... ALL of it, is stuff that Matilda does.

    Playdates are so hard, especially when things don't go their way, or the way they expect it to go.

  13. #85

    Dec 2005
    not with crazy people
    8,023

    Lu hon maz thinks you need some intervention babe. Agression can be a way of communication.

    eg

    Melting down, sreaming, hitting at dp cause he's picking him up in my eyes euals..dame it dad Im not ready to go home yet im having to much fun.

    Maybe try the whole counting until you listen thing (was taught this by the OT). If he starts going off...say im only warning you 3 times and then I wont talk to you because you are hurting me. then when he does it the second time say '2" then the third time say '3' and then ignore him...no matter how much it hurts ect. after 5 mins if he is still doing it, use a hard voice and say THAT IS ENOUGH. Keep the wording to a minimal cause there is nothing worse then to much veral at a melt down situation. Be strong and stick to it...it bloody works hon. I use my fingers when I do the counting thing, 1 finger for 1, 2 for 2 ect. That way if they start up in public I just look at them and do the one finger without a word....pull's Wilhelm up big time.

    I was taught this by the OT and we think it works because

    Less verbal to comprehend in their brain
    Counting and knowing the outcome help as its a type ot routine
    telling them your feelings helps promote recognision to the pain he is causing
    knowing the outcome of no verbal or eye contact if he doesnt listen

    Just re-reading over what your posted hon......it clear that he is very frustrated in himself and is lashing out......what are his habits? do you have a 'cave' for him to retreat into for some him time?

  14. #86
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    But he is doing so well at Kinder, and that's what confuses me a little. There are no tanty episodes (although he does lose his temper, but they don't think it's a problem and they are working on it with him...so 10 times a day I get "I FEEL ANNNGRY.."). They say he is very very attentive, participates really well in discussions. One of the teachers even sent emails home about some planetary thingo they were on about, and can't believe his range of knowledge and often complement us on his language skills.

    On a one to one basis ds is pretty good. In fact thats one of the reasons dp and I have a very fluid and flexible access arrangements - sometimes its just too hard for him to have both the kids at his place, so we sometimes take one kid each for the weekend and everyone gets enough attention

    Does Miss M need too monopolize everything too? I think that's why Mr M talks so much - it's a way of keeping the attention on himself solely. Positive or negative, it's all the same to him....

  15. #87
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    MMMMMmmmmm see Miss M also does very very well at school. She has never NEVER had a melt down at school. Its awesome that he is able to identify his feelings!!! That is a HUGE thing. Miss M often has no idea how she is feeling and she stores them all up for the moment she sees me or DH.

    So, like Mr M, if she's had a playdate and held it together the whole time, the minute she sees one of us.... explosion... bits of M everywhere.

    Asperger's children tend to have excellent speech. Also a high IQ and interests in certain areas, such as science or maths etc etc.... That is why they are usually diagnosed when they get a bit older. They aren't as easy to catch until their increasing frustration is beyond a "tantrum" and into "meltdown" territory.

  16. #88
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    Maz, he doesn't seem to be the 'cave' type *sigh, I think he is paranoid he will miss something. Although on the days I have just had enough, or he seems unable to chill down I have locked him in his room . Generally he kicks the door down and hurls more abuse but if you can keep him in there, he calms right down and in 45 mins or so he skips out like nothing has happened.

    And darn it - this is where dp is such a problem. Communication. Dp also never shuts up, so when he tells ds off, it's an endless lecture. Always full of negatives.
    I can see poor ds is overloaded by the endless stream of words, gets worse then the entire episode escalates .

    I get straight to the point - in fact I do the same thing your OT suggested, less words the better, I tell him I can't hear him when he yells , and how much the screaming hurts mummys ears.

    I remind him what senses he needs to do an activity - ie eyes, ears (NOT bloody mouth)...
    I do have ways of calming him, I have made great strides over the last few months, but jaysus - nothing seems to STICK.

    I can't find the consequences to his behaviour . I couldn't give him timeout in his room cos he started jumping out the window (7ft drop), now that's locked shut, the door handle has cracked under tanty pressure and now timeout means I have to try and hold the door shut. With a rope (If anyone calls child services I'll hunt you down), and he usually manages to force it open anyway. I feel helpless cos there is NO end consequence left. Well I take his toys etc, no sweets after dinner, missed going somewhere. It's funny cos he seems to accept those punishments on the chin, but no change to behaviour sadly.

    *bigger sigh

  17. #89
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    Honey I put a lock on the door for Matilda, she climbs out windows and then climbs over the 6 foot fences and runs into the road as fast as she can. We now!!! WOOT!!! Have the windows nailed shut and a bolt on the door so I can lock her in there, so she won't hurt me or Jovie. Its not bad to do, its really for the safety of everyone else in the house. And in our house its for Matilda's safety as well, I mean I won't hurt her if she's locked in the room when I've had enough abuse....

  18. #90
    Registered User

    Oct 2007
    Grafton
    208

    Hi everyone,

    Christy- Thats great about the diagnosis, you must feel relieved in a way to have a name for the behaviour and know that its not your parenting skilss to blame
    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.
    I am really hanging out for Ethan's appointment next month, for so long i was in denial and didn't want to label him but strangely now i feel like i need a diagnosis so we can move forward. I've been thinking back over the last 3 years of his life and my gosh we've had a bumpy road but you know what... now that i know that there's something else going on and Ethan isn't just 'naughty' i feel better, i used to feel so down at myself when Ethan would explode at playgroup and wasn't playing nicely like the other kids, i used to think that somehow it was my fault, like myabe i was hard enough on him etc etc

    Christy and Maz, thank you so much for sharing your stories here on BB, i've been glued to the computer screen . You both are amazing ladies and reading your journies has really helped my to feel not feel so alone. Its so refreshing to read something you've written and think 'yes, i'm not the only one feeling that way'. Thanks guys and keep the posts coming!

    Lulu - How old is your ds? has your little guy been diagnosed at all hun? We're in the process of getting my little man diagnosed. like you i could never quite make up my mind if Ethan was showing asd traits or not, he'd have some really autistic habits but he had more non autistic traits than autistic traits if that makes sense? I used to think 'hmmmmm he does this and this and thats odd but then he makes eye contact and is affectionate so maybe he's fine and just a little delayed'. When he started day care and for the first time other people started pointing out his 'odd' behaviour thats when i realised he was more than just 'quirky'. And the more i started reading, the more i realise that he was displaying heaps of asd traits, right from a few months old. Its strange how once you become aware of something everything becomes so much clearer...i look at Ethan now and i can see the full picture and see just how different he is.

    And darn it - this is where dp is such a problem. Communication. Dp also never shuts up, so when he tells ds off, it's an endless lecture. Always full of negatives.
    I can see poor ds is overloaded by the endless stream of words, gets worse then the entire episode escalates .
    Yep Dh does the same thing. Ethan tends to scream a lot at Dh for no apparent reason and i think that might be because of the way Dh addresses Ethan's behaviour.

    I can't find the consequences to his behaviour . I couldn't give him timeout in his room cos he started jumping out the window (7ft drop), now that's locked shut, the door handle has cracked under tanty pressure and now timeout means I have to try and hold the door shut. With a rope (If anyone calls child services I'll hunt you down), and he usually manages to force it open anyway. I feel helpless cos there is NO end consequence left. Well I take his toys etc, no sweets after dinner, missed going somewhere. It's funny cos he seems to accept those punishments on the chin, but no change to behaviour sadly.
    Oh Lulu i feel like i could have written that myself. I'm struggling with discipling Ethan, i try time out but he doesn't seem to understand why he's in there and when i try to explain i can't get a word in because he's too busy repeating whatever he wants over and over. I've resorted to just putting him in his room for 5mins to scream it out but when i go to get him out its like he's completely forgotten about the tanty 5 mins before.. he either keeps screaming or just grins at me and walks out..it's frustrating becaus i'm not sure if he understands why he was in there in the first place

    we had a mini break through yesterday... Ethan was playing in his room (he was meant to be sleeping ) and i walked in and found him laying on the floor ready for a nappy change (he does this when he does a poo) anyway i said 'have you done a pooie?" and he said 'pooooooooie..........Big one!'
    hehehe i just couldn't help but laugh, it was the first time he had shown enough awareness to describe something if that makes sense..usually he will just keep repeating poooie pooie pooie... so it was nice in a gross way

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