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  1. #1
    heeeeerekittykitty's Avatar
    heeeeerekittykitty is offline My babies, my cats ....ahhhh , bliss !!!
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    Default Utterly devastated - looking for positive stories

    Hi all

    I have not been on bubhub in a very long time . Im very scared of judgment regarding this post but I just can't keep it in anymore .

    Without a shadow of a doubt my son has autism . I am 3/4 the way through a formal assessment but I don't need that piece of paper at the end to tell me what I already know . I KNOW. The health professionals who have so far finished their reports are in agreeance .

    I am utterly heartbroken I really cannot BELIEVE how devastated I am . I'm crying daily and every waking moment I am obsessing about he's future . And I'm not so devastated because I feel like autism is some ungodly terrible affliction to be ashamed of . NOT.AT.ALL.

    I'm devastated at how cruel the world can be to different people . ( Yes, I also know it can be incredibly kind too )

    I'm devastated that I may never ever hear my sons beautiful voice . Or even know what it sounds like :-(

    I'm devastated that he will get bullied.

    Not make friends .

    Not be included.

    Not meet a life partner . Or have children . ( if that's what he wanted )

    Im worried that he's sad he can't talk . That when he's around other kids who talk he wants to talk but can't :-(

    - that he will NEVER talk. Never hear I love you mum or even the word mummy. This is killing me.

    Omg my mind is a mess . I can't believe how bad I'm coping with this.

    I know he's still my beautiful little boy and that has not changed , I know that . This child is the light of my life , he IS my life. I'm just so sad he may find life harder in so many areas.

    I would love to hear positive stories if anyone is willing to share . How your children are doing ? In school? Some of their obstacles and how they've successfully overcome them ?

    Is this normal I feel this way? I feel like other people seem to just go on their merry way after a diagnosis and cope with it just fine while I'm this weak mum who's just not handling it.

    I know I'll accept it soon enough .

    I lay in bed every night , shut my eyes and think about children that are unwell and suffering or terminally ill and I try to get perspective here, I really do . But it just doesn't change how I feel at this particular time about this so please please no one tell me to just be grateful for a healthy child because there's no words to describe how much I grateful to just have both my children healthy and alive with me here on earth . Of course that all that matters at the end of the day. But I feel how I feel .

    Thanks in advance so very much if I get any replies.

    Xxoo

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    Default Utterly devastated - looking for positive stories

    I just want to give you hugs, I haven't been down the path your on but can appreciate the devastation you must feel, I think it is a natural response as a mother to feel like that. I'm sure BH and especially those that have been in your position will help support you through this.

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    Default Utterly devastated - looking for positive stories

    Hugs just sent you a pm

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    Couldn't not read and not reply - massive

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    No one is going to judge you sweetie! If they do, they have major ish-ews...

    I'm so sorry that things look so bleak right now, it hit me really hard when my daughter was diagnosed with her vision impairment too.

    It won't always be this hard, I promise. xx

  6. #6
    SpecialPatrolGroup's Avatar
    SpecialPatrolGroup is offline T-rex is cranky until she gets her coffee.
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    Oh, hugs to you. I think that it is perfectly understandable that you would mourn all of your hopes and dreams for what he could do or have.

    I just want to applaud you for facing it head on, by getting a diagnosis you you have a better chance of helping him through early intervention that will give him a better chance of having a great life. He is such a lucky little man to have such a great mum.

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    Please know that the way you are feeling right now is very very normal, and nothing to feel embarrassed about.

    You are grieving, and that is normal. You are grieving the loss of the future that you thought you would have, and it will take time to go through that grieving process and start anew with the new future ahead.

    Your child is still the same child that he has always been, but your expectations for his future have had to shift - and that is a bit adjustment to come to terms with.

    I don't have a child with autism (and I hope you don't mind me replying, with that being so), but I used to work closely with children - and later adults - who did have autism. I was part of a team that undertook applied behavioural analysis therapy with autistic children, and I have seen that it is sometimes possible to facilitate improvements in terms of things like communication and interaction with the world.

    As you will know, there is a wide spectrum upon which the autism diagnosis falls and, within that, all children are unique.

    I would definitely suggest seeing a counsellor as soon as you can to help you through this process, and to take heart in that there is a lot of support out there (and in here) for children and families who have received that diagnosis.

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    No judgement here, It is totally natural to feel that way.

    I felt the exact same way as you when DS2 was diagnosed in June. I was so devastated I developed a weird tic in my neck. I cried all the time, I was so upset. After the initial shock wears off, I find I am much better able to cope with the diagnosis. Of course I think a little part of me will always feel really upset, but I can see the progress he is making with all his therapies and EI and that helps too. I also go to a playconnect playgroup (instead of normal playgroups) it is nice because we all know what each other are going through. You can join even before a diagnosis is made, and that is through Early intervention usually - so getting in to EI asap he really helpful.

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    Your not weak far from it. As far as I can remember from messaging you before your son is still little .... 2 and a half is that right? Have a good old cry it's normal . My son if you remember has autism. He has gone to preschool and is doing well. He has fun , is social , is learning and enjoying life . He started talking better since 3 . I have days I'm just plain in disbelief .... They are few and far between now. Your son has a loving amazing mummy by the sounds of it and that's a great place to start. It's going to be ok. He will be ok . So many autistic people have relationships that are meaningful , children of there own but they view life in a different way. Yes there will be tough times ahead but that also goes for neuro typical people. Have as many break downs as you need . Once you have the diagnosis pause and research the therapies you feel are right. I think I told you we are doing RDI. I'm thrilled with the results so far . My son has his days when I want to scream!!! But mostly he is special and so is his brother without autism.

    Its good your looking for the positive stories because it's easy to get overwhelmed. Remember no two autistic kids are the same so you know him best . If you ever need a chat PM me xxx

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    Default Utterly devastated - looking for positive stories

    Hugs, it's only natural to feel this way. You are grieving the life you thought your son would have. We got a formal diagnosis this week for my little one and I'm going thru the same atm. PM me if you need to talk/ vent/ whatever


 

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