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  1. #91
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    oh my sweet boy. thank you so much for what you wrote. I am so sorry i didn't see it until tonight. Don't know how i missed it.

    Things are looking much better! Just me personally. I told a few more friends my suspicions and they all looked at me like i was on drugs!! Braxley makes awesome eye contact. He looks right at you, as if his eyes could talk. That's why no one believed me.

    My pediatrician appointment was finally yesterday, i waited 2 bloody months, for an half an hour appointment. I wasn't sure what to expect. SO i just told him my concerns, he started with the usual questions i guess, he looked rather bored actually. then as i was answering (the while time braxley kept getting toys and giving them to the pediatrician and mumbled) he grabbed some sheet and asked more specific questions.
    About 20 mins my older son left the room to go to the toilet and man Braxley had a meltdown. he was screaming his lil lungs out, banging on the door, even got a few head butts in there. I picked him up tried to calm him down but he wouldn't, kept screaming out 'yah yah' - his name for his brother. As soon as my older son came back, he stopped and continued with handing the pediatrician things.

    I always feel like i have to explain braxleys behaviour, but i tried hard not to. and for the first time, he tried explaining the behaviour to me.
    He said - exact words - "there is no doubt in my mind that braxley is autistic" he then explained the spectrum and said we need to get him into see psych and speech pathologist asap so we can get funding for him so we can both get help.

    I cried ALOT yesterday, in relief that it wasnt all in my head. that i wasnt just imagining it all. In sadness, that this is the life for my child. That things are going to just that much harder. but i have kind of accepted it now, even tho i did already know, hearing a pediatrician say that is pretty confronting.

    Family and friends have done a flip they believe me now! thankfully i dont have that battle anymore!

    Now im in protective mum mode.... get the best help i can for my son. despite the cost, im going private for his proper diagnosis just so its done quickly. Things will just have to be a bit tight for a lil while.

    Oh and to add a lil something different to everything. Braxley had an ear infection for a few weeks wouldnt go away saw an ENT, turns out his tonsils and adenoids are severely enlarged and have to come out, most likely in 3-4 months. i have had all this news in the last week, PLUS im house hunting, need to move which i know that braxley is going to have a hard time coping with. but we will deal with that when we get there!!

    My gosh sorry didnt mean to prattle on. feeling ALOT better than i did last time i posted, not angry any more. I know WHY brax is the way he is and i understand that now.

    Now that i know Brax is autistic i will be posting a lil more often.... i felt kinda silly before, like i was imganing it all and how stupid i was being if it turned out brax didnt have autism.

  2. The Following User Says Thank You to tracym For This Useful Post:

    purpdirewytch  (14-04-2013)

  3. #92
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    Hi tracym,

    I just wanted to give you a huge and hope you are feeling ok. I went private for my DS's dx too, and you should get re-embursed for most of the assesment costs which helps if you are financially a bit strapped. I'm in Melbourne, so I'm not sure if this applies in all states. I hope so...


    You are now on your way to getting the help you need though, which is a wonderful thing. I'm glad to hear that family and friends are also taking it on board and are on your side. Good luck with the assesment process, I hope it all goes well and is done asap for you. Poor little guy, having to get his tonsils out too. My thoughts are with you, my DD needs to have hers out too so I empathise.


    Stay strong, it sounds as though things are busy for you atm and will be for a bit longer. Happy to chat if you need to.

  4. The Following User Says Thank You to ILOVEBRODY For This Useful Post:

    tracym  (16-04-2013)

  5. #93
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    jeepers creepers!! i didnt know realise how expensive it was for private!! i get $85 (from $175) back for 4 sessions and i will need about 6-8 sessions PLUS i have to pay for a report fee... which is $165.

    All over a 4 week period and i just dont think i can do it! im a single mum with 2 boys! i thought maybe i could put away $50 a week. But its just a little to much!
    Thats the cost thru the psych my pediatrician recommended think i might do a little calling around!! or will have to wait and go public.

    I think they need to do a little tweeking to the assessment process!! there needs to be just 1 person they see not 3 different ones!! i know there is the private system but its a 6 month waiting list.... but then again ECIS in vic is about a 9 month waiting list!!

    this is the part i hate, the waiting!! Good news is we started a special group today, called Leaping Lizards. special sensory playgroup type thing for people on the waiting list to see ECIS.

    I felt really unusual seeing other children like Braxley. and how they completely ignored each other lol Brax enjoyed it, didnt freak out until a lil boy tried to high 5 him but he handled it well just backed off. Didnt scream or push or hit and was just pumping his fists, rather than arm flapping he does when touched. Very proud.
    He speech is improving, he still doesnt actually say anything, but he mumbles. and he sounds out words sometimes, which is such a relief. I think the lack of communication is the worst part of it all! How can you help if you dont know?!

    Anyway things are pretty crazy busy and right now im trying to relax with a nice glass of wine (bottle been sitting in the pantry for at least 9 months lol) before i head to bed.

  6. #94
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    Hi everyone, I have not been here for awhile, an I will go back and read everyone's post's later, but for now, I have a concern I'd like to share and see what any of you think.

    DS has always been a slim, and tall baby and toddler. I have suspected int he past he is not absorbing nutrients or digesting food propely as whole pieces of food would come out, but now I'm sure of it because 2 days ago DS ate an avacado, and the next time he pooped, it was green, the same colour and almost the same texture as the avacado when it went it!! Now I can understand carrot, peas, and corn, but avacado? Its soft and smooth and you'd think it absorb so easily. I am now concerned as to what to do. Obviously I will take him to see his paed, as I want to know what is going on, but I am not happy with medications they may give him, as i know they can lead to long term issues. He is on a mostly gluten and dairy free diet (has the odd sandwich and weetbix for brekkie) and he has a pro-biotic every morning. Any other suggestions or advice?

  7. #95
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    Traceym, where are you? I'm near Melbourne and I see a paediatrician in Kew. She is quick to give a dx, took me only 2 appointments and I got our funding. I've been told that's pretty quick. From 2nd appointment to getting funding - about 2-3 weeks. Don't mean to make anyone feel I'm rubbing their nose in it, I'm not, I just wanted to let you know I case you are able to see her and get things moving a bit quicker.

  8. #96
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    One of those days.....

    Do you ever have one of those days where you just want to stop and cry?

    I love my boy, and all that he is. Sometimes I actually love his autism, its what makes him so special and unique. But today, I just want to cry.

    We were at playgroup, and today he just didn't listen to anything I said. It hit me fair and square int he face how different he really is from the other kids. He's 3, and only just started mumbling some words. Mostly its just the sound of the first letter of the word, so mostly you have no idea what he's trying to say. And then there are 1 year olds, saying "hi" and "mum" as clear as a bell.

    My boy hardly responded. He just played in his own world, stimmed, ignored me and had a few tantrums when he couldn't understand why he can't just go up and snatch a toy off another kid.

    Yes today has been very sad. He's been very hard work today. Tomorrow is another day, and I'm sure it will be better, but for now, all I want to do is cry.

  9. #97
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    Have not been on here much in the last couple of months . Totally understand where you where coming from mysweetboy , big hugs. Some days just suck ! Lots of love xx

  10. #98
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    Hi all I'm a first time poster in this section here is my story.
    M is 4 and he is seeing a paed tomorrow, under investigation for ASD maybe HFA/aspie
    His paternal cousin has severe non verbal austism. It has been a long road and m Childcare providers brought it to our attn wen m was 2.5
    He had a 5 word vocab.
    Fast forward to now he has had a formal speech assessment which showed language and communication delay under SALT, and ot assessment which showed auditory processing disorder and poor fine motor skills. We are seeing DR uyen tran tomorrow? Just wondering thoughts, what myt I expect? What are some of questions I maybe asked? I recieved this appt thru the public system but I am also seeking privately as well.. With the Michael macdowell and dr mark davoren

  11. #99
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    Good luck for tomorrow , it's tough having your child under the microscope , it's hard to believe your actually sat there talking about your child with the possibility of an ASD diagnosis , but there is help out there and if the signals sway towards autism at least you will have a plan with therapy and early therapy is extremely helpful.

    When my son was diagnosed in late 2011 we went private , one appointment with the development pediatrician and we got the diagnosis and letters for funding the same day. I'm very grateful we did it that way ,it must be hard waiting . Anyway he just asked lots of questions about our sons interactions with us, with others, his speech, his obsessions , questions about pregnancy and labour , he sat with Finn and asked him questions ( Finn just ignored him and babbled baby talk aged 3!) . The dr pretty much knew straight off. He also tested his reflexes , muscle tone and tried to get him to draw.

    The dr diagnosed Finn mild to moderate autism. That was 18 months ago. Now he can talk, attends Pre school happily . Plays appropriately and is doing better each day.

    Good luck tomorrow, he is still young and has alot of growing and maturing to do , it will be a big stress for you tomorrow but alot can change over the years. Just answer the questions as well as you can and the dr will guide you to the next stage Of the diagnosis and give you info on funding for therapy .


    Big hugs.

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    Mummabear84  (22-05-2013)

  13. #100
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    Thankyou for ur reply. It is hard. A part of me wants it to be all a load of b s h I t and the other part just wants what is best for M
    I feel guilty about this process as well. I don't want this to change the way anyone views my son.
    I don't want him labelled


 

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