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  1. #101
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    Gosh,I hear you on that one!!! Take care and let us know how you go xxx

  2. #102
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    I am so sad. Still very much confused... Paed was excellent she really listened and was thorough in her approach. She thinks there is something there ?mild this was hard to take he is having a psych assessment soon and maybe the ados before an official DX.
    M has poor muscle tone, ?spd...
    That's was all I could make of the appt... It went for nearly 3 hours I'm exhausted. I am at home in bed.. I just want to crawl into a big hole and never come out. WTF. I am so worried about my M.

  3. #103
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    Big hugs to you.I know how you are feeling , I was the same , I couldn't believe it was truly happening , I was terrified for the future of my son, grieving for the loss of something . Give yourself some time , have a massive cry and don't feel bad for crying . Life is going to carry on but he is still your beautiful baby boy and there is so much help and support out there . But do allow yourself to feel angry , upset , sad , do have a big cry it's a really hard time your going through right now . Big big hugs to you xxx

  4. #104
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    I am also in the process of getting a diagnosis for my DS. He is only 2 and a half. Reading your post babynomad on much your child has progressed, I just can't explain how great it was to read that!!

    We have gone private also. We have seen a few paeds in the public system, but the best answer I got was that I had had two really really good children, and now I have a normal one. This new paed is fantastic. I think I was more shocked by the fact that he was listening and paying attention more then he was agreeing and explaining things! DS has a significant global delay and shows signs of autism, but wanting to get speech, ot and hearing test before making it official. Our next paed appointment is the 17th of June.

    Still crossing fingers he is still catching up from arriving a little early, but what will be will be. Regardless of anything, I am really looking forward to have a better understanding of how to help him out and stop him being so frustrated!!

  5. #105
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    Hello again.
    Well thing are sinking in I think I have. Been in shock thurs was a bad day for M. Big melt downs we can go a fortnight with hardly any and then have 2 or 3 in the am Many hours. This reaffirms my fears 😞 DH and don't completely understand yet and get so upset and angry. I lost it at work on fri I jus broke down.
    I work in theatre and I had to find another nurse to replace me while I sat in the galley and wailed. F uck.
    This is hard. All this emotion has made me so rundown I barely eat and I look anorexic it's disgusting. My little one P and I are both sick with colds so we have spent the past few days in bed hiding from life. I feel so pathetic things could be a lot worse M could be suffering from
    Something life threatening. I just hope little p doesn't have it although she seems so different to m at this age.
    Where to now?
    I am just waiting
    Waiting for M to see the psych
    Waiting for M to have the ados
    Waiting for M to have a physio assessment
    Waiting to hear back from
    The Ot following his assessment.
    Should I go private and pay the ridiculous amount of money to get answers faster it seems.

  6. #106
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    I would pay private if you can. It's done quicker and then you can start therapy. It will be ok I promise , it's some mental adjusting . Watch temple grandin on you tube , she is an amazing example of the brilliant minds of autistics. As she say she is " different not less". With your little one give lots of time for communication that the biggest thing I can say . Frustration and overloading can lead to melt downs, for example don't ask lots of questions or put pressure on him to show you what he can do ( this would be stuff like asking him to show you where things are ect ) I would take all pressure off yourself and him for now , lots of praise for him for anything he does like having his teeth brushed " oh you are such a big boy opening your mouth for me , good job !". They process information slower so if you ask him to come over and let you put his shoes on it will take time so plan for that if you need to go somewhere and let him know in advance what is going to happen next so he is aware , " we have eaten our breakfast so now we are going to get dressed , then brush our teeth and play ball outside ".

    We got so much info from our Relationship development intervention therapist ( RDI) so much more but that is what we began with. It may help avoid some meltdowns . Hope you ok with me telling you that. They are small things that made a big difference to us.

    Big hug to you , it's a huge thing . I think I was angry for ages about it , it's so unfair. Our boy is doing so well thank god, he is quirky but things have improved out of sight now he has begun to talk aged 4 . Our other two kids ( younger than him are neuro typical )

    Honestly if you can afford private do it , you need to know and it will stop this horrible what if feeling. Then you can find you way and start finding help. Lots of love xxxxx

    Also see if you can find a play connect playgroup in your area ( look at the playgroup Australia website) they are free for kid Undiagnosed and diagnosed and a a great support.

  7. #107
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    Hello also to you mummabear84 ! You sound like your on your way with things , hope you get some great info , maybe we could all share what different techniques the therapists give us for our kids? Hope to hear about your little ones progress. Good luck xxx

  8. #108
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    Thanks, I have no idea which way I am going! But yes, things are starting to happen.

    Cherry18bloss - I have the same concern with public or private. I am a single mum of three, so it's difficult to find the cash for the extras upfront. Fortunately our paed was very understanding (went private but he ended up bulk billing us). It has been recommended that we visit a drop in clinic for speech and ot. It's at community health apparently. We are going in on Tuesday to see what they can do for us, if not an assessment then and there it will be a month or two wait. If nothing happens this week I think we will go private. We have another appointment with the paed on the 17th of June and I don't want to walk in empty handed obviously.

    The ups and downs of getting a diagnosis is just ridiculous. One day I am certain they will find nothing and we will be back at square one (still not entirely sure if that would be a good or bad thing), or that we will get a diagnosis (also still on the fence of good and bad). I would love an easy fix as I am sure every other parent does, but just ready for our journey to begin I guess. Two and a half years of second guessing everything is definitely long enough!!

    Has anyone's kids had chromosome tests done?? Still awaiting ds's results and not really sure what to expect.

  9. #109
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    How do they do that mummabear? I have never heard about the chromosome test before. Why are they doing the test specifically . Just interested that's all. We have not been back to any peadiatrician since the diagnosis ( we didn't really gel with him ) luckily Finn has been really healthy. So I have never heard of that . I'm just being nosey

  10. #110
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    It's called a cgh microarray. They take a blood sample and then line it up with normal sample of the 46 chromosomes and look for any anomalies. Ds has also had seizure like episodes since nine weeks with global development delay and a few odd (or completely normal, random) physical things also. Takes about six weeks to get back. It's really interesting for what it is and the fact they can actually do something like that! But scary with the what ifs!


 

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