thread: Aspergers/Autism/Sensory Integration Chatter

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  1. #1
    Registered User

    Apr 2004
    Outer East, Melbourne
    581

    even to 'Stop!!! Don't run into that...."

    Sometimes I think our kids just hear the 'run into that' part and miss the rest !

    Try to ask them to do what you want, not what you don't want - like asking them to walk, instead of 'not running'. 'keep your toast on the table' rather than 'don't throw your toast around'.

    I've also got this thing going at bedtime and bathtime - not saying, 'its time for a bath' but rather 'what toys are you going to play with in the bath'. Same with bedtime, 'what books are we going to read in bed'. Don't give them a chance to say no.

    My Alex has just turned 3 and we're in the process of getting a diagnosis. I thought there was something unusual about him just before he was two and a half. We go to an early intervention place once a week, their program is based on the floortime program from the US and gives you tactics and things to use everyday.

  2. #2
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    Sorry Barb... I was in a bad place when I read your post, but I can answer now. I do say the right things... I rarely say "Don't!" but sometimes... in the thick of these days... you say what comes out first and don't think. I've had an awful time of this with Matilda because everyone keeps telling me what I am doing wrong and how I should be doing things, so I take things very hard sometimes even when they are given with the best intention.

    Well Wednesday we had our first official OT appointment. I felt comfortable as soon as we got there. She asked me what we the hospital had us doing for Matilda. I said "um... nothing, we were given a diagnosis of sensory integration disorder and a request for further assessments for Asperger's" She was horrified. She said "Did they know you were moving?" and I said yes of course... she said "and they just left you... that is appalling" and I was in love.

    I told her of a few suggestions from lovely friends, using ipods, ear muffs, picture story books of the move, preparing her in advance for things. I said we had some exercises my OT friend suggested like "rolling in a blanket, jumping on a trampoline, twirling etc...".

    She said "You are in a crisis and everyone has just dumped you. You need to work through a crisis and then we can get you exercises etc to work on"

    She wants me to do 3 A3 size charts. One for the week and what is happening, one for each day which we do in the morning to show her what is happening when, and one for the lead up to Christmas and the silly season. We've got the Christmas one done so far. But every morning we tell her that what is happening next and how things are going to go. We have started to enforce a stim free time when lights are off and everything is off, maybe a quiet video if she's having a good day, and she has to lay on the lounge for 30 minutes. This is helping heaps already!!!

    So our developmental paediatrician appointment is Monday.

  3. #3
    Registered User

    Sep 2006
    1,435

    christy sooooooo glad that you have finally someone in your corner giving you the help you need - and how brilliant that even in such a short space of time, it has had results.

  4. #4
    BellyBelly Member

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

    Aren't OT's magnificant! They really 'get' our kids. The charts sound great..

  5. #5
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    We saw the paed last week who "surprise surprise" told us it was all our faults & it was just behavioural after we were there for 5 minutes. *groan*

    He said she was unable to regulate her emotions as well as sensory integration disorder... ummmm yeah.... and???? So he wanted us to start a thing called "Watch,Wait and Wonder" in order to provide Matilda with a way to express herself without our interfering but our presence. We have tried it and... nothing. No change... okay its only a week but seriously?? It means both DH & I have 3 turns a week of spending 30 minutes alone with Matilda. We sit on the floor with her, with some toys and nothing else. We don't initiate anything, we sit, if she communicates with us we are allowed to respond but we aren't to stifle her. So the first time I did it, she screamed because she didn't want to be in that room, so we moved and an hour later... maybe we had 5 minutes of doing it the right way. Than she screamed for the rest of the day. The next time I tried it, she went okay, but then screamed the rest of the day. Whenever DH has tried to do it, she has refused and screamed for hours.

    I told the paed that I would continue to do it, but I felt like it was something else someone wanted us to do, but it just left DH & I open to more criticism and I didn't like that.

    He has referred ME to councelling because I am a "distraught" mother.... I'm sorry, I don't swear but WTF??? OF course I'm frigging distraught!!!! WT???? Wouldn't you be in my situation? On the best day since our move, Matilda has screamed for a minimum of 2-3 hours. ??? Distraught????

    *breath in, breath out*

  6. #6
    BellyBelly Member

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

    Oh Christy! Big hugs to you! go and find a different paed or if you feel the need perserver and detail everything that is going on so when you walk in next time you are armed with ammo! Will your OT write you a letter/report that you can take in? Oh another thing my SIL did was video tape her DS and took that to the paeds office.

    As for the couselling. We were sent to couselling too! It was such a huge waste of time but did help DH and get on the same page on some issues in regards to behaviour. Is amtilda seeing the psychologist too?

  7. #7

    Dec 2005
    not with crazy people
    8,023

    **** - what a complete ********!!!!! *maz' blood boiling over now* Its one thing for these 'professionals' to give us advice on how to cope and do things with our kids but lets see how they would react having to live the reality...having them 24/7. Honey...my advice...stop friggen doing it. If its doing your head in stop it. You honestly wont get anywere and whats the point of making the whole house upset when its obviously not working! Maybe the arsehoole should have given you a referal to an Occupational therapist the ****!!! Oh I am SO angry!! Let me at the *****!!!!

    We're not having a good time in this house either!!! Last day of school yesterday and Wilhelm just doesnt get it Today is thursday mum...its not my day off. And Vy has started being a turd which sets Wilhelm off! She's doing the screaming in public thing...and saying no, kicking me...I could have killed her last night at mass. And Mateauz got a vrius the other week along with conjuntivist which has made him go backwards so it looks like we might have to get a special leg cast to stop his leg turning out

    It just never rains softly these days