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    MyFourCubs's Avatar
    MyFourCubs is offline MyThreeCubs plus one- I am the luckiest Mum in the world...
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    Question Awesome Mums of Autistic kids- how many of us are there?????????

    Hi all,

    I tend to stick around this section of BubHub so I don't get out much lol, but the last 2 days I have stumbled across a quite a few mums with autistic kids. I had no idea that there were so many of us and I just wondered exactly how many of us there were?? I would love to chat with other mums, I get very lonely sometimes as I don't get to speak to many others with children like my son. The special needs girls here are AWESOME but I sometimes think I don't fit in all that well because although Alex is "special needs" his needs are different to those who have tube fed bubs and other such issues.

    Please, please come meet here and share your story! My sons story is linked in my signature.

    Thanks,
    Sara

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    sara i think i'll put my hand up for this one. Alex doesnt have a concrete dx but so many drs have commented...rude people lol.

    What do you think??

    xoxox

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    punkbaby is offline Got it back :D
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    After DS head injury, at first they used to compare disability with the likes of autism, similiar characterisitics although he doesnt have it, its all brain injury related, quite a few medical professionals have said he had it till they did the nitty gritty tests and finally realised the reason behind his problems were his actual injury not autism. (despite telling them things had changed since the accident)

    I can relate a little, I find it frustrating at times and feel a little lost with all these extra therapy and needs that he has but we get on with each day as it comes and it helps make him a stronger little man and me a better mum too, well better as in i can understand him alot more I do feel a little lost at times though not having other mums who can relate. We get there though thats all that matters and things are getting better each day too

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    Hey Peta, I was actually thinking about you when I posted and thinking you would be first to reply!! I don't know if your Alex is autistic, the only thing thta put the thought into my head was you saying yesterday that she would "lose words" like Mum and Dad and stop doing things that she was previously doing, like "high fives." I knew that YOU would be thinking about autism and like I said last night, my Alex does this as well. I'm sure that you know the signs well enough and there is no way that you will let her slip through the net and be misdiagnosed if she is. Doctors are **** and they are so reluctant to diagnose so young. I had to PUSh and push for a dx and if your Alex IS autistic you will have to as well. Grrrrr. Even though we did get a dx relatively early I still look back on things he was doing (and NOT doing) and think, "how the **** could anybody tell me there was nothing wrong with him?" It was as clear as day and I'm sorry I let myself be fobbed off by so many drs and other health professionals. Like I said in the chat yesterday, you have to dig your heels in ans FIGHT. Having said all this though, I truly hope your Alex is NOT autistic it's just her other issues that she has to deal with.

    PunkBaby, I remember your story and I'm so glad things are getting better. the frustrating thing with Alex is we have days even weeks where he seems SOOO much better and we think woo-hoo! It's all paying off and them BAM. It all goes to cr@p again. Like today- we have had the WORST daya nd I think, oh my gosh, my whole life practically is spent on Alex and his autism- attending therapies, doing our "homework," cooking his allergy free food, it's exhausting and when we still ahve shocking days it is hard to stary motivated. I'm glad it is all paying off for you and I'm sure that another day I will say it is paying off for us too.

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    sticks my hand up!!!!!

    i think it's great that we can share our journeys and experience.
    I can't believe how our stories are so similar!

    Maybe we should have this made a sticky!!

    Roslyn

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    MyFourCubs's Avatar
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    You know I was thinking the same thing- at the least we could make an "autism chat thread!"

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    sam's mum's Avatar
    sam's mum is offline and Amelia's and Belle's too....
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    pick me, DD1 - Amelia - has Asperger's.

    hmm. pick my mum although I haven't had the official diagnosis, I am pretty sure that this is my life.

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    My hand is up too. DD2 has Aspergers !

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    sam's mum's Avatar
    sam's mum is offline and Amelia's and Belle's too....
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    this is a post that I did about a year ago, asd from my perspective. there is more that I think of from time to time, but usually something has to jog my memory and then I forget by the time I am posting.

    not sure how helpful this will be, but I thought that I would give a perspective of what it is like for me as someone with Asperger's. the idea came after someone (sorry can't remember who) asked for help for their niece. I figure (I hope) that I can articulate things better than I could as a kid, so I can probably do better than your kids.

    One thing I would say is that each ASD kid will not necessarily be set off by the same things, so all I can say is how things affected me, and how I felt about things.

    Hope it helps.

    I don't like my food to touch each other. My mum learnt this fairly early on, and this is true of my ASD DD also. I have grown out of this, but as a kid - food shouldn't touch.

    If I am upset, I want to be by myself. Preferably in a closet. somewhere dark, quiet and alone, with a wall at my back. I don't want to talk, I don't want to be held. I want the world to GO AWAY.

    When I feel better, I don't want to talk about it. In fact, a lot of the time I don't even remember what happened. This drives DH NUTS. He will still be upset, I will have totally forgotten about whatever caused the upset in the first place. It also drove my mother nuts. She always thought I was lying. I used to say, it must have been the other girl. I wasn't lying, I truly didn't remember whatever had happened.

    If you get it wrong, I will keep explaining or persisting until you get it right. this may be something really really picky. don't say it is brown if it is black. Surely you know that you are wrong! (I have gotten much better at this on the outside now that I am older, I still have issues on the inside though )

    Don't lie to me. I was devastated when I found out the Santa and the Easter Bunny weren't real and that my parents had been lying to me. I still haven't totally recovered from this emotionally, even though I realise intellectually why they did it. I still find myself questioning the things that they tell me.

    No matter how much Mum tries (and she owned a dress shop for many years, so believe me she tried) I won't wear clothes/shoes that mix up different colours. Brown top, black pants sure. I will even wear a red top with blue jeans. But not a whole heap all at once.

    The phone. this one is interesting. At work, I can call anyone no problems. At home, I call my mum, my sister, DH and DD. That's it. I hate talking to people on the phone. If they call me and I know them, that is fine. I couldn't even call my Granny (when she was alive that is), and I loved her to bits. Phones and me just don't work.

    Ummm, I can't really think of anything else at the moment, and this thread is pretty darn big already. If I think of anything else, I will add it in.

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    You can add me too. In the process of getting it formally confirmed (DS1 has been dx by paed, being assessed by speechie and psych now).

    Jane - I do things similar too. I think I am just wierd though - not ASD


 

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