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  1. #911
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    Quote Originally Posted by bigZ View Post
    So sorry if I have mentioned this before. My mother wants DS to sleep at her house. I don't want him to because I don't trust her and I can't tell her it's because I don't trust her. He still wakes during the night and looks for me. She doesn't lock her door. And even if she did DS can open it anyway. And he runs. He would have no concern for cars coming, he would have no concern for the weather he would just leave and my mum wouldn't hear him. She says she would but I know she wouldn't. She has fallen asleep here and the kids have been screaming and running around her and she was fast asleep. I would love to let him sleep there but it makes me feel a bit sick at the thought.

    But I am the bad guy that doesn't let her be a "normal" grandmother... She was never a "normal" mother why would she be a "normal" grandmother. Then of course I feel like I am just being stupid and over protective.

    How do I let it go? How do I stop worrying about his safety? I can't. I don't know how to trust her with him.
    Hi guys, sorry to butt in here but my DS is on the autism spectrum (Asperger's) and I follow along from time to time for tips etc. I couldn't read about what you're going through bigZ without replying though as I've had similar issues in the past with my DS and family wanting to babysit him.
    Could you just tell her that your doctor recommends against the change in routine and he/she advises that your DS only sleeps at home until he is older? That way, you don't have to admit anything, she can't argue with it (without coming across as selfish) and she won't feel like it has anything to do with you trusting her. A little white lie like that can't hurt when it's in the best interest of you and your DS.
    Anyway, hope that helps :-)

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  3. #912
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    Hi Everyone,

    I'm not sure if this is the spot to post my introduction but my DS7 had his ASD assessment on Thursday and I was told he's on the higher functioning end on the spectrum. We had suspicions but he has a very, very complicated medical background to begin with so we approached his behaviour in other ways before getting a diagnosis.

    Our deal - between his class teacher, my husband (his step-dad) and I was that if he was keeping up academically at school and not having a detrimental effect on his classmates that we'd try other methods before getting him assessed. He had his own carpet square, a fidget (sensory) box etc, but this term things have gone drastically downhill.

    So we sort of knew the diagnosis was coming, but now that it seemed so obvious to the speechie (and me for that matter, it's amazing the way they draw out all the little quirks with their methods, like a psychological x-ray!) I'm feeling so guilty for not getting him assessed earlier. How could I let him struggle for so long?
    It doesn't change who he is but I guess it's changed how I see him? I don't love him any less of course, but I suddenly see all these traits and I feel helpless. How do I work out how his cogs turn so that I can help him fit in a bit better? We need to go back to get the final results in mid August but she said "without a doubt, based on this one-on-one assessment, he's on the higher functioning end of the spectrum".

    I'm doubting myself worse than ever!

    I'm also rambling... 😣 sorry!

    I honestly had no idea where else I could go to speak to people who would 'get' it, iykwim.
    Consider this some word vomit ;-) sheesh I hope it makes a little sense.

    Sorry again if it's in the wrong place

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  5. #913
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    Don't feel bad. We all vent and rant here.
    My ds1 is just turning 8 and is on the high functioning end of the spectrum. My ds2 is just being screened for sensory asd.
    It is hard when you first get that yes. But you can get through it and be a better advocate for your boy. I have just done a course with ds1 teacher called tips for autism. I'm not sure if it's offered in aussy yet. It was such an eye opener.
    It made me look closer at what was going on in his head. His body language and trying to see the problem coming.
    We have all been there. It will be OK. You have made the first step.

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  7. #914
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    The important thing now is it's done now!

    There are support groups around, facebook, your council. And as sookie has mentioned, look into Autism Workshops. Councils sometimes run programs and courses what have you to help educate parents. Also a good opportunity to find people who understand through there.

    You are not alone!
    You will be ok!!

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    Thank you!!

    I'm feeling a lot less stressed about it now, I think. I suspect that I had a lot of concerns that we'd instilled some of his behaviours through poor parenting but now that I've also spoken to a couple of family friends, they've reassured us that we've done an amazing job and he's lucky to have us.

    Is it something you inform people (adults in particular) about if he's annoying them? One of his quirks is that he phrases everything in a formal sense, and goes into precise detail about all of his recounts/descriptions when speaking to people. It makes simple questions a really long ordeal. It's who he is though, and I'm just confused about telling people why he does it. It's not a bad thing, it can just get a bit annoying/exhausting when you're in a shop or someone's just trying to make small talk. Whereas before, we just thought it was just plain frustrating because he'd never wrap it up when we told him to, now we understand that it's just something that he struggles to control.

    I'm also not the sort of person who goes out of their way to tell people our private lives but I'm not sure if it'll be beneficial for our son or not, which essentially is the only reason we'd decide to disclose to people who don't need to know, like school and doctors.
    I suppose I'm worried that they'll treat him differently.
    He's had cancer as a baby, a liver transplant, and he also has anaphylaxis. The anaphylaxis in particular means that he's 'different' to his peers already

    I don't know!! I'm clearly still frazzled (my username is rather apt currently ).
    Thank you for letting me ramble xx

  10. #916
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    Quote Originally Posted by Frittlebitlazzled View Post
    Thank you!!

    I'm feeling a lot less stressed about it now, I think. I suspect that I had a lot of concerns that we'd instilled some of his behaviours through poor parenting but now that I've also spoken to a couple of family friends, they've reassured us that we've done an amazing job and he's lucky to have us.

    Is it something you inform people (adults in particular) about if he's annoying them? One of his quirks is that he phrases everything in a formal sense, and goes into precise detail about all of his recounts/descriptions when speaking to people. It makes simple questions a really long ordeal. It's who he is though, and I'm just confused about telling people why he does it. It's not a bad thing, it can just get a bit annoying/exhausting when you're in a shop or someone's just trying to make small talk. Whereas before, we just thought it was just plain frustrating because he'd never wrap it up when we told him to, now we understand that it's just something that he struggles to control.

    I'm also not the sort of person who goes out of their way to tell people our private lives but I'm not sure if it'll be beneficial for our son or not, which essentially is the only reason we'd decide to disclose to people who don't need to know, like school and doctors.
    I suppose I'm worried that they'll treat him differently.
    He's had cancer as a baby, a liver transplant, and he also has anaphylaxis. The anaphylaxis in particular means that he's 'different' to his peers already

    I don't know!! I'm clearly still frazzled (my username is rather apt currently ).
    Thank you for letting me ramble xx
    It sounds like you, your son and your family have been through alot of medical issues. FWIW it sounds like you are a great support for your son - you now have the diagnosis and hopefully the support you need.

    We have also had a recent ASD diagnosis for our daughter, and a few of your points really resonate with me. In particular I feel guilt for not going through the process sooner and I have also been wrestling with the thought of 'who do we tell?' We are usually quite open people, but I am conscious that it is really my daughter's information/diagnosis to share, not mine. She is only 5 so it's up to us to decide for now. I am torn between not wanting people to look at her differently and being aware that she may not want people to know, but also wanting people to understand and provide support to her where needed. It's a tough one. A piece of advice I was given regarding this issue was that it might be useful to share the specific difficulty the child is having in a situation, rather than the diagnosis. The example this professional gave was that if a child was overwhelmed in a loud environment they may ask if they could leave for a while/put headphones in and explain that they are overwhelmed (rather than providing the diagnosis as well). Not sure if that might work for you and your son regarding the issue you described above.

    I would ask the service that you received the diagnosis through whether they know of any local support groups/workshops, etc.

  11. #917
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    Is there anyone with school aged kids in a state other than NSW?
    Do your kids receive any support at school? Or is no support pretty much the story right across the board?

  12. #918
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    @HarvestMoon I am in nz and we get none at the moment. The teacher is not very helpful either.

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    Quote Originally Posted by Sookie Stackedhouse View Post
    @HarvestMoon I am in nz and we get none at the moment. The teacher is not very helpful either.
    That's awful. It's the same here. My DS was driven out of mainstream. He's been exempt from attending school for almost 2 terms now. The education department won't address the issue. Home schooling is really the only option it would seem.
    I was just wondering if there was some glimmer of hope, and perhaps there was some support somewhere ... i'd happily make an interstate move if there were. In reality, it probably is the same everywhere.

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    I would home school if I could. He was so much better when we did. I must say that it is better than the battle of who knows best in stuck in with his teacher right now.
    If you go with home schooling I can help you out with some of it. Took us a month to settle into a routine but it was so much better when we got that part sorted. My house was so clean to! It worked in with the way I taught. But I did always want to be a teacher.


 

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