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  1. #1
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    Question Awesome Mums of Autistic kids- how many of us are there (#2) ?????????

    Hi All you wonderful ladies
    First of all I have to say to all the southerners I hope you are all safe and that all your loved ones are too. It is a shocking thing to hear of the fires that happened overnight. I know some are close to where it was and I know some are close in NSW to the fires there.
    I have been very busy at home. Second week at school and all seems to be going well. nothing starts to happen. Peter received an award in class the other day for fantastic behavior he had all the kids clapping for him. We are doing a pizza party on sunday for his birthday. ( I just can't think about a proper party)I am hoping it goes well.
    For scrapmadmum2k sorry you are not having a good time. Try looking at AEIOU early childhood centres there are some on that side of town I think and they are for autistic children. I hope this helps you.
    Nic I am sorry to hear that it is a pain to get anywhere with help. I think the word you were trying to use was cr@p. I understand and it is very tiring and confusing as you get sent here there and everywhere. Good luck with it all.
    Sethandrubysmum Great to hear the diet is working for Seth. Also good news re help with the hearing test being so soon. Good luck with it.
    Kylie it is amazing how much the kids love to cook and wow foot spas I wonder if the offer it to the mums! Hope all continues well for Jock and that he loves it all year. Good to hear things are good. Take care
    SARA welcome back. Sorry it has been a tough time for you all. What are they doing with Alex at daycare? do you think it is impacting on his behavior? I hope for your sake that it does not. Please keep your chin up and remember we are here for you.
    Last edited by mumof2cuties; 09-02-2009 at 20:09. Reason: Not thinking

  2. #2
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    Hi Ladies
    I hope all of you are well and safe down there. I have not heard from anyone so I thought I would post again just to say I and my family are thinking and praying for you all. Take care all of you. Letitia.

  3. #3
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    MyFourCubs is offline MyThreeCubs plus one- I am the luckiest Mum in the world...
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    I just want to cry my eyes out. I just wrote the longest post, so bloody long and it wouldn't post as I had to many bloody fing smilies and now it has bloody vanished and I am so upset I can't even look at this screen.

    I can't do it.

    Sorry

  4. #4
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    Oh SARA you poor thing. I understand. I hope you are well and I look forward to getting your post later if you get time. Take care. Letitia.

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    MyFourCubs is offline MyThreeCubs plus one- I am the luckiest Mum in the world...
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    You have to laugh- I just got 3 paragraphs in trying to recoup what I lost the other night and accidentally hit some buttone and lost it! I seem destined never to write this post. Stupid lap top!

    I am very worried about everyone. Mo5, Rosie, you guys live in Vic, yes? Please let us know you are safe. Such a horrible, shocking tragedy unfolding... too awful for comprehension and I pray you guys are all ok.

    To try and remember AGAIN my post from 2 nights ago- Nic, it is all a beurocratic nightmare trying to get anywhere even with a bloody dx. We had a similar prob with Aspect- We were told after alex was dx that they would not accept his paeds letter of dx- they would only accept a letter from a psyhchologist. We could not find one psychologist to see him as he was under 3 b ut managed to get a appointment with a private psychIAtrist which was going to cost us a bomb for the assessment and report but Aspect siad they would not accept it regardless as he was a psychIAtrist and not a PsychOLOgist Then a few months later a friend who has a child at Aspect said that seemed totally wrong so I rang back and was told by a different woman thta as he was under 5 and not going to school all they needed was a letter from his paed!!!!!!!!!!!!!!!!!!!!!! GGGGRRRRRRRRRRRRRRRR....... So we lost a few months on the wait liost for absolutley nothing. Keep trying til you get somewhere!

    Thank you Nic for that beautiful phrase, "trying to make Naomi all that she can be." Through a few horrid days you made me wake up to myself and focus on doing everything I CAN for Alex- and focus on his positives. Good on you for your positivity!!!!!!!!!!!

    Happy Birthday peter!!!!!!!!!!!!!!!!!!!!!! I hope he has a great birthday Letitia and I am THRILLED he is doing so well at school that is GREAT!!

    I am sure pre-school itslef has nothing to do with Alex being up and down- his pre school is fabulous, I adore them and most importantly they adore Alex and it is so wonderful to see how well they look after him. He loves them and is thriving there- this wek he even ran in with no tears, was as happy as could be, it was awesome! When he leaves he gives them all high fives and kisses and even said a big GOODBYE with a wave when we left. I think it may just be the change of routine, i hope, it's a big change for him and I hope he settles down soon. we have had a better week which is great. TOUCH WOOD! Today we had his first home visit from Aspect and the woman was so lovely , feel very positive about it all. Can't wait to hear back from fachsia so we can put in for some more visits- atm we get only 3 a term!!!!!

    Scrapmad, as I said to Nic the system SUX. So sorry for what you are going through. Keep pushing and pushing until you get a result- all of us have had to fight for a dx of some kind and then you STILL have to bloody fight to get anywhere. It's a joke! You WILL get there though, I promise you, just don't take know for an answer. I would call your local early intervention organisation and ask for a list of places that may be able to help you- you re a single mum with a high needs child, you have letters from pre schools to prove it, you should be entitled to help of some kind- keep looking til you find it!!

    Rosie thats great news about the hearing test and great he is improving ont he gluten free diet!!!!!

    Well we had a shocker the other day with Alex. I will not go into it in much detail as i did in the first post but in a nutshell I got woken up by my neighbour on Mom morning at 7am, she had found Alex wandering down the middle of the road. He had woken up and managed to get out of the house, all before we had woken up. The night before dh and I had been to the cricket and did not get home til late- we think there must have been some confusion with Mum leaving and somehow the door was not locked properly- needless to say we were shocked, horrified and very embarrassed, I feel like a totally incompetent mother and have been since waiting for Docs to show up on my doorstep. Can't understand why he did it- perhaps he was looking for us as wewere not home the night before when he went to sleep- my poor precious bub :-(

    Anyway sorry if I missed anything, as I said hope you guys are ok, big ((((((((HUGS))))))) to everyone xxxxxxxxx

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    hi girls.

    so GREAT to see you on here again sara. xxx

    i know it sux..big time. this waiting for funding is KILLING ME. unfortunately naomi's chromosome dx has complicated things and i am STILL waiting for the dev pead to call me in regards to the ADOS and putting together all of naomis diagnosis's into one huge diagnosis lol.

    genetics are sending their information to the neuro for our visit next month and i am just over all the fingers in the pie...someone PLEASE just put it all together!!

    we went to preschool today for a little bit of transition and my goodness, you can so see how different naomi is in that situation. she didnt want to join in the group at all and she didnt want to do what they were doing, she was like a wirlwind and just wanted to wander and open and close doors and spin on the desk chair and in the end i just took her home before morning tea as she was not going to join in for that either...! i know they will be good with her there, but today it just hit me that there is a remarkable difference in her and other nt kids. she cant open her lunch, use the toilet, open her drink, unpack her bag, get out her hat, sit for a few minutes, talk to the children, none of that!! aaaaaarhhhhh!

    i have been doing alot of reading on naomis deletion and the gene in particular that is affecting her is very interesting and it seems it could be linked to a syndrome so we are eagerly awaiting the neurologist and in the meantime we probably will see genetics again next few weeks.......

    scrapmum.....life sucks, but as sara said sometimes we have to see all the positives in our world that seems so negative..i hope it gets better hun xxx

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    oh and on a good note preschool is applying for the highest level of funding for an aide for naomi so i hope it gets approved!!!

  8. #8
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    I've been away on holidays! DH and I took the girls to my sister's beach house and it went quite well. The girls slept brilliantly, we could hear Sophie cry but we couldn't hear her chatter so we got the best sleeps we've had in ages.

    Sophie was scared of the beach but we did it the ABA way and took her to look at the beach first, then we carried her as we walked over the sand, and then held her close whilst we got her to put her feet on the sand, rewarding her with every step (mostly praise). By the end she liked going to the beach for short periods, lots of dogs went there so that was a good distraction for her too.

    Nadia got right in there and went in the water (we held her most of the time).

    So a great trip in all.

    We're in Victoria but in the suburbs of Melbourne. We don't have any relatives or anyone we know in Greater Victoria. We feel for everyone out there though, what a terrible tragedy

    So now we're back, we had our ABA meeting yesterday and it's always really informative. I love having a plan of dealing with Sophie both when she's calm and when she's in a tantrum. Our supervisor says that the tantrums will definitely go away, that we can fix them and it will get better. Deep down I was worried Soph had regressed and ABA wouldn't be able to make the tantrums go away. They can, but it will happen with tiny steps over a very long period of time. As long as it gets better long term, I'm fine with that.





    Personals: See I don't get this. Seth's Mum you have to question and fight for your son. I wouldn't let any expert get away without answering my questions and answering them fully. unfortunately we all have to bear the brunt of a big fight, we can't sit back and let things happen and simply accept what people say. we have to MAKE treatment happen and fight for our little one's sake. "Ah well" does not constitute a fighting attitude. I'd be in there demanding he look at this study and that, what's his real reason for disliking ABA? There's no doubt that scientific studies support ABA as the best therapy out there and these are what I'd present to that paed. Or simply going to another paed, or calling your psych and talking to them about it. Effective treatment requires a lot of effort and you can't be shy or be unprepared when talking to experts.


    Quote Originally Posted by SethandRuby'sMum View Post
    i know confuses me too mummy2sophie.. ah well

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    Hello again all, sorry to worry anyone, we are even further from the fires than the other Vic girls, being way down south on the Mornington Peninsula. The worst we have copped was getting caught in a sandstorm on Phillip Island last Sat, and the swells that made you wanna catching the ferry back to Stony Point.
    It is very sad and frightening to see the destruction of so much of the state here.
    Things on the home front are pretty boring, lol. Am hanging out for Grandma to go home (even though I will be like after she is gone) so we can just be a normal family like I am used too, IYKWIM. I appreciate all the help, but am getting annoyed at things not being done my way and the kids getting in strife for things that are not usually a prob in our house, stuf like that.
    Hopefully I will get to see Craig for 3 days at the end of the month, just working out details now. I can get it together, cause we are all really missing him (only 9 months, 3.5 weeks till he moves down...but who's counting, lol).
    Jock is enjoying school, but we do cop it in the afternoons, and the only way to stop him being too feral is to let him watch dvd's - if I never see WallE again, it'll be too soon. I don't want him watching telly all the time, but as we don't have a trampoline (had to chuck it before we moved) and we don't have the room for swings in our very small yard, it's either that or the park on offer as a distraction. I really need to find somewhere selling the oval trampoline I want so I can make our yard more interesting and hopefully saying no to the tv or a dvd won't be such a meltdown inducing thing. Ah the frustration...
    I think that is enough from me, to all of you fighting to get services, cause it is bloody hard work.
    Sorry for no personals, keep well everybody, and I should be back a bit more regularly next week.

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    Just a quick one from me today, I'm feeling too emotionally drained to go into huge detail about things but DS is starting at a 2nd daycare centre on Tuesday to allow me to study and they seem pretty good as they have A LOT of experience and skill when it comes to SN children..... I'm really anxious and scared of what will happen to DS at his paed appt on the 26th because it's becoming increasingly obvious to me (and with talking to the Director of this new centre who is very knowledgable on the subject of ASD), there is definately a deeper diagnosis coming for DS - ADHD isn't really 'fitting' IYKWIM but I was clinging to it in the vain hope that he would be able to overcome it and 'grow out of it' whereas with ASD it's a 'forever' diagnosis

    It is so clear that DS has NO idea of social interaction - how to initiate play in an acceptable way, how to control his impulses .. even being able to look outside of his 'world' -- he is just SO egocentric and his scope is very limited, he spent the entire time playing in a very small area of a very large playground when normally kids would be off exploring every corner of the place IYKWIM.

    Things are really starting to hit me and I thought I was prepared for whatever diagnosis is coming but I'm obviously not prepared. I'm so scared and sad for my little boy -- I feel like I'm at fault somehow and I am absolutely heartbroken to think how hard his life will be.

    anyway, just needed to get that off my chest and in a place where people would understand and know what Im going through, rather than just offer misplaced platitudes.

    Hope you're all as well as can be given your circumstances. Big hugs to everyone.


 

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