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  1. #11
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    Quote Originally Posted by pennylane View Post
    My DD2 is on the spectrum (Specific Language Impairment with ADHD and Autistic traits) and will be 4 end of Feb and is pretty much non-verbal (maybe has 40 or so words and no real sentences)

    I never know what her wants or needs truly are and when she's having a meltdown we never know why.

    I hear you.I hate what this is doing to her and our family.We have no family support here (ADF family) and our friends can't be relied upon because she is just too full on for most people,so I deal on my own.We're moving in 6 weeks closer to family though,they've never been around her much so Im not sure how they will go with helping either.I don't think they conceive how much hard work she can be.They seem to think she's just going to 'grow out of it'.

    I just want her to speak.I don't know if Im any good at this whole special Needs parent thing and often wonder if people could do it better than me.

    Anyways <img src="images/smilies/highfive.gif" border="0" alt="" title="Highfive" smilieid="111" class="inlineimg" to you and some <img src="images/smilies/hugs.gif" border="0" alt="" title="Hugs" smilieid="35" class="inlineimg"

    Because it's a damn hard job we do.
    Good luck with your move. I hope family will help you out a bit. You most certainly need a bit of time out as much as you love her as its full on . And as her mum you know better than anyone who your daughter is and how to help her , You will be doing a wonderful job instinctively in difficult circumstances and I think we all have to give ourselves a bit of a pat on the back and copious amounts of chocolate !!

    I feel better today , just needed some support as it all got too much yesterday .when it's all going ok we just carry on but on the days where they seem to go backwards , where everything is a struggle and you witness a new behavior and fear in their eyes you start to panic about the future.

    Thanks again and love to all our kids neuro typical and with extra needs.

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    pennylane  (07-11-2012)

  3. #12
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    Default I'm so over autism

    I'm so glad you're feeling better. Whole my daughter has Down syndrome, not autism, I get where you're coming from. I have Facebook group of Mums of kids with SN, and I posted on there a couple of weeks ago, a post that was remarkably similar to your OP.

    I think it's important to recognise that while parenting a child with SN is not the end of the world, it's really hard work sometimes. It sounds like you're doing an amazing job under some pretty trying circumstances!

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    babynomad  (05-11-2012)

  5. #13
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    Default I'm so over autism

    I know how you feel. My child has been diagnosed with autistic disorder syndrome. I'm working as hard as I can to help child and am doing a good job of it but it seems like a constant battle to get his father to understand his needs. I'm emotionally exhausted atm. Are you getting respite at all? I know my child is eligible for up to 10 hrs a week government funded with a one on one carer. They will either do in home or out of home respite

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    babynomad  (05-11-2012)

  7. #14
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    heeeeerekittykitty is offline My babies, my cats ....ahhhh , bliss !!!
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    Default I'm so over autism

    Hi baby nomad I just seen this, havent been on in awhile . Glad your feeling a little better now , please pm me anytime , you , itwasntme and a few other lovely ladies on this forum have offered me such support through my sons ASD diagnosis, I'm always here to return the favour.

    Gee you have your hands full at the moment , I don't blame you for feeling how you do sometimes .

    Please keep in touch xxoo

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  9. #15
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    Thanks! Feeling much better , I think you just get exhausted physically and emotionally sometimes and then you can begin to feel dread . But it's a new week so back on the horse ! Thanks everyone xxxx

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    ILOVEBRODY  (15-11-2012)

  11. #16
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    I love my DS unconditionally but understand exactly how you feel. You brought tears to my eyes

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    babynomad  (25-11-2012)

  13. #17
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    Only just checked this thread again . My son did a wee wee in the toilet !! Yay !! See , there are bad days and days of hope .... !!! If I could get him out of nappies it would be huge . So happy xxx

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    I am sure you are aware; but I think your son probably has Asperger's as well as autism - even if those who wish to sell the DSM have now lumped it into one thing. (Please note in Australia, which is where I think you are, no one agreed to any such change in title) Anyway; I have autism and Asperger's - I think you sound like a very loving mum who is doing amazing things. If I may, the singing - part of your son's autism is probably super sensitive hearing - which I had as a child and still have. I am a grown, dignified professional adult and as a child someone singing would drive me up the wall. It was the tone, the sound, the sound vibration. Until he becomes more tolerant; probably when you are in an aged-care home you will get the same response. Today, I still cannot tolerate anyone singing or whistling and usually tell them to be silent - or move away from them. Your choice of music is the same I am sorry; what is beautiful to you may actually physicall y hurt his ears. You could try desensiting ; if you contact me I will tell you how to do it - it takes a while and no you do not pay anyone to do it fo ryou - you can do it yourself. The waking you at night and screaming demands is serious - have you tried picture boards - again you can make these up from mags and do not need to buy expensive products. Then it might be necessary to do a good look over his room - there could be outside noises; even as small as someone's footsteps walking down the footpath to go to an early morning job that frightens him. The car lights coming in the room can do it too - and so much more - again if you contact me - and maybe send a picture of his room (without him in it-just the room) and a diagram of where it is situated in the house and in the street I might be able to come up with a few more ideas. Before you can stop him doing this; you need to get some ideas on why he is doing it. There will be a reason; I used to get very stressed at frogs crawling up the window - I did not mind frogs but from that view to a small autistic child it was terrifying-like monsters. Of course, the 'what's wrong board' is a useful tool - along with the constant use of a certain style of re-direction. As to the other kids screaming at you to get your attention - devise a plan and words that you are going to use to demonstrate it is not acceptable - tell them that they do not have autism (you will have to do this repeatedly) and you will not accept the same behaviour as their brother. You need to set up a plan. Again, if you contact me we can work on it. The poo - keep a chart of when and how often; along with what he has been eating. It could be an infection of some kind; but unlikely. You need to go to a gastro just to check. What you do not need to do (I usually do not tell people what to do -but this is important) is spend a fortunate of the household money on special foods and supplements unless the gastro says so. It is well-established that there is no evidence that the so-called miracle diets and supplsements work - but your kid gets to produce very expensive urine. I know this does not help with the hair and nails - which I do not have space here to cover - but it could be worse; there are kids with autism who do not like the taste and texture of food or drink and parents need to hold them down and force feed them at meal and snack times. SLEEP DEPRIVED is dangerous. Please talk to your doctor-which I suspect you have done - but go back and make a big fuss about it. No, autistic children do not understand love, and many autistic adults do not either. There may be a difference between understand and feel - but it is not something we get in our younger years. Please note, I am now trying to keep this brief (ha ha ha) if something is not working, as the RDI appears not to be, all the advice of researchers, teachers, government clinics etc is not to continue to spend time and or money on it. Please feel free to contact me.

  15. The Following 4 Users Say Thank You to gbanksmoore For This Useful Post:

    babynomad  (05-03-2013),HollyGolightly81  (09-12-2015),sashas girl  (09-12-2015),steel magnolia  (10-03-2013)

  16. #19
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    Thanks very much for your reply and insight. I really appreciate it. Since writing that post around 3 months ago we have had many changes. My son is talking so well, he has told me he loves me many times accompanied by cuddles, he is calmer, he has stopped screaming at night ( we moved him in with his brother who I believe is his biggest help ) he is eating well,he is wonderful with his baby sister and has toilet trained himself. I just decided that I will be calm and let him be and also carry on with the RDI which I believe is a gentle and respectful and he has just blossomed. He still hates me singing but that's ok.

    I think I was going through a tough time with the birth of my third child and us all adjusting . He was definately picking up on my stressed vibe!

    Thank you so much, he was diagnosed mild to moderate but I feel his future is very bright and I wouldn't change him for the world. As loud and as bossy as he is he is very unique and special .

    Thanks so much for your advice and help xx

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    babynomad, I could have written your post word for word today. I was sitting outside thinking "why does it have to be this hard?" I am usually ok with it all, and see my DS for what he is, a beautiful, wonderful child who is just slightly different from NT kids. But today I was tearing my hair out!

    gbanks - it was so wonderful to hear it from the perspective of someone who lives it. My DS hates when I sing or try and read stories as well, instant meltdown trigger.


 

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