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  1. #31
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    Default Re: Utterly devastated - looking for positive stories

    I'm so sorry to hear your news! I've not read all the replies so not sure if this has been mentioned, however I just wanted to let you know of a story on 60 mins last sunday night in regards to children with autism and how apps on the ipad are helping them to communicate.

    Sorry I can't offer any advice, I just thought you might like to watch this online as it might be of some help to you.

  2. #32
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    heeeeerekittykitty is offline My babies, my cats ....ahhhh , bliss !!!
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    Default Utterly devastated - looking for positive stories

    Oh thank you so much to the current replies . I'm glad I checked my subscribed folder or I would have missed these , I scroll through new posts quickly most days but haven't been on much , I'm trying to come on more I miss BH!

    So since my original post my son had received he's official diagnosis of autism.

    Not alot has changed regarding how I feel however I have sorted everything . Fahcsia funding has come through which is AMAZING, I so grateful beyond words for the support that is there for kids on the spectrum , carers allowance has also been approved and DS is doing regular OT and speech plus I'm considering a few other things .

    To the PP who described it as chronic sadness , well I couldn't have put it any better . There's no joy in life for me anymore . This is just one big cloud on my brain that NEVER ever goes away . All I care about is my son having a happy life without struggling( and my daughter too if course ) and im so fearful he will never speak . It's almost become like the be all end all for me ( aside from healthy of course ). I'm trying to accept that if he never speaks its not the end of the world and he still could be so happy but it sure feels like its the end of the world , the thought devastates me for him , not me , him. I feel so bad as usual feeling this way , he's healthy and alive that's all that should matter I tell myself :-(

    It's suspected he also has verbal dyspraxia which is contributing to he's inability to speak and that's just a double blow , it will be so much harder now for him verbally .

    Thanks to everyone as always , the support I've always gotten on here re- this has been nothing but incredible . I've met the most amazing parents the last few months . They all seem so together and accepting , and they insist they are just in a different place further down the track to me but I just can't ever see myself being where they are :-( they are just SOOOOO ok with it . Accepting . They are incredibly strong .

  3. #33
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    Default Utterly devastated - looking for positive stories

    everyone has a different journey, especially when it comes to things like this. don't expect yourself to be anywhere or anything like other parents right now. you will get there eventually but it takes time xx

  4. #34
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    Quote Originally Posted by heeeeerekittykitty View Post
    Oh thank you so much to the current replies . I'm glad I checked my subscribed folder or I would have missed these , I scroll through new posts quickly most days but haven't been on much , I'm trying to come on more I miss BH!

    So since my original post my son had received he's official diagnosis of autism.

    Not alot has changed regarding how I feel however I have sorted everything . Fahcsia funding has come through which is AMAZING, I so grateful beyond words for the support that is there for kids on the spectrum , carers allowance has also been approved and DS is doing regular OT and speech plus I'm considering a few other things .

    To the PP who described it as chronic sadness , well I couldn't have put it any better . There's no joy in life for me anymore . This is just one big cloud on my brain that NEVER ever goes away . All I care about is my son having a happy life without struggling( and my daughter too if course ) and im so fearful he will never speak . It's almost become like the be all end all for me ( aside from healthy of course ). I'm trying to accept that if he never speaks its not the end of the world and he still could be so happy but it sure feels like its the end of the world , the thought devastates me for him , not me , him. I feel so bad as usual feeling this way , he's healthy and alive that's all that should matter I tell myself :-(

    It's suspected he also has verbal dyspraxia which is contributing to he's inability to speak and that's just a double blow , it will be so much harder now for him verbally .

    Thanks to everyone as always , the support I've always gotten on here re- this has been nothing but incredible . I've met the most amazing parents the last few months . They all seem so together and accepting , and they insist they are just in a different place further down the track to me but I just can't ever see myself being where they are :-( they are just SOOOOO ok with it . Accepting . They are incredibly strong .


    Hello friend, i feel as if I’m reading my story through you, my son is 4 and has Autism with no speech , we are doing speech,Ot, ABA...would love to know how your son has come along in all these years???? I’m sure I will get to know a positive story from you, awaiting your reply

  5. #35
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    Just wanted to send you hugs and tell you to just breathe easy mama!!!

    My DD was diagnosed when she was 2 and I went through all the emotions of wondering if she'll go to a main****** school, if she'll make friends, get married etc etc I know it's such a brain explosion you go through as a parent at that time.

    She is 5.5 now and the most sociable lovely and super intelligent little girl. She has absolutely come along in leaps and bounds with her early intervention therapy that she is now far advanced beyond many of her peers at preschool on all levels. She continues to astound me with things she is interested in or asks about. Things I don't even know the answer to and have to look up Her language is so far advanced for her age the speech therapist we were seeing told us to stop coming quite a while ago because there was nothing she could work with her on (they were doing things for much more advanced years).

    When she was diagnosed she was well behind peers in all milestones and showing quite strong stimming behaviours etc and whilst her development doesn't mean she no longer has autism or won't have any issues going forward (as adolescence/teens provides a whole new set of challenges) it's constantly amazing to me how they work so hard to overcome any challenges they have and thrive and grow as little people.

    Your child needs your absolute love and support. You also need your own support network so you have some in the bank for them. That may be professional help/respite or family or friends. Don't worry about what the future holds today as they change massively year to year and even month to month. Take things one day and one milestone at a time

  6. #36
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    Quote Originally Posted by me+he&she=three View Post
    Just wanted to send you hugs and tell you to just breathe easy mama!!!

    My DD was diagnosed when she was 2 and I went through all the emotions of wondering if she'll go to a main****** school, if she'll make friends, get married etc etc I know it's such a brain explosion you go through as a parent at that time.

    She is 5.5 now and the most sociable lovely and super intelligent little girl. She has absolutely come along in leaps and bounds with her early intervention therapy that she is now far advanced beyond many of her peers at preschool on all levels. She continues to astound me with things she is interested in or asks about. Things I don't even know the answer to and have to look up Her language is so far advanced for her age the speech therapist we were seeing told us to stop coming quite a while ago because there was nothing she could work with her on (they were doing things for much more advanced years).

    When she was diagnosed she was well behind peers in all milestones and showing quite strong stimming behaviours etc and whilst her development doesn't mean she no longer has autism or won't have any issues going forward (as adolescence/teens provides a whole new set of challenges) it's constantly amazing to me how they work so hard to overcome any challenges they have and thrive and grow as little people.

    Your child needs your absolute love and support. You also need your own support network so you have some in the bank for them. That may be professional help/respite or family or friends. Don't worry about what the future holds today as they change massively year to year and even month to month. Take things one day and one milestone at a time
    Hi dear friend, so so so happy to know about your daughter’s achievements and also feeling so hopeful and motivated to continue to work towards making him amazing..can i please know what therapies you did??where from?


 

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