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Thread: Aspergers/Autism/Sensory Integration Chatter

  1. #73

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    Maz for Wilhelm and you too. Hope he was alright last night!

    Sarah Mason has only just started using other colours. Mostly cos he ran out his red pencils and textas and I got mean on him didn't buy anymore. Red is his colour!


  2. #74

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    Hi all. I hope it's ok for me to be posting in here. I have been lurking due to a few things going on with DS1, and I feel the need to post. I don't really know where to start. Basically, we are on the list at the Mater to have DS1 assessed. This is after several "prompts" from day care about having him assessed as well as our own observations of some issues. And one of the carers "prompting" has a son on the autism spectrum (just mildly). At first we thought we'd really only be seeing what his IQ is, as he is very bright, but now it seems it will be more to see if he has ADD or is on the autism spectrum.

    The thing is, he has "quirks", and certainly some of the things I am reading about with the ASD kids in here. But he is different too. He doesn't throw tanties. He really never has. He likes routine and can get "sad" when things change, but he does it anyway without too much hassle. He mostly doesn't really play with other kids, but sometimes he does. And he mostly makes eye contact, he just doesn't when he is being told off or asked to say sorry or something he doesn't like.

    But he doesn't really mix well with other kids his age. And his best friend at kindy is the class trouble maker (who I am sure has ADHD or something). He can't concentrate on things he isn't interested in. Books and puzzles will hold his attention for ages, but he can't sit through a meal, or concentrate on the toilet for long enough to do no 2s. He is nearly 4 (in Feb) and still has "accidents" nearly every day, despite meeting most other milestones really early. He talks really well, but doesn't communicate well. What I mean is, he rambles. He has gone on for about 6 weeks about Nemo. Everything to do with Nemo. Everything about the sharks. Everything about the baracoudas. Everything about the pelican. On and on and on, even at 4am on the toilet he was blabbering on about Nemo. And he just talks. It takes a lot to get him to stop and listen or answer questions. He is supposed to be getting dressed and he just talks. Or counts, or spells or asks questions. It can take half an hour to get him to concentrate for long enough to put his clothes on. He does really well at day care and swimming lessons when the level he is at is new. But a couple of months later he won't behave. He is bored and can't concentrate. He only ever draws in black. I didn't even know this was a sign until this thread. And he is pedantic about some things.

    And the scariest thing. A close friend has an autistic (and savant) 13yo. I think it's aspergers. When she talks about B (her DS) as a child it reminds me so much of DS1. There are definite similarities. She met DS1 a few weeks ago and when I told her about the Mater she said she's almost positive we will get an aspergers diagnosis. She said talking to Jack was just like talking to B at the same age. I am hoping that it's just because they are both bright. But more and more I am wondering.

    Anyway, so where we are at, is that he is low on the Mater list as they don't think, from the referral (which didn't have much information in it) that he is a likely autism candidate. But she said to ring back if there are more things we are concerned about and he might get moved forward. A few things have happened in the last week or so since then to make me think I should ring and tell her about them. But then I'm scared because I don't want them to find a "label" for him. But then I think, if we know, we can manage it. So I guess I'm looking to see what you ladies, who know more about this than me, think about whether or not there is a potential that it's more than just being bright. And if so, what things should I mention to bring his appointment forward. Or indeed if I should move his appointment forward. At this stage he won't be seen until after his 4th birthday in Feb. Maybe he's young enough that timing isn't important. And is he better off going with them thinking he doesn't have anything, than thinking he might? I am so confused. Thank you for listening.

  3. #75

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    Mel

    Sorry I have just seen your post and I have to go tend to Caleb (Trev is trying but he wants Mum) so I'll be back to reply properly.

    Just wanted to say don't be scared of the label. For us it has hardly changed anything, it just gives him opportunity for help.

  4. #76

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    Mel... I too am on my way to getting kiddies into bed, but I want to say that I would call and let them know his "quirks" that you have noticed this week. Express your desire to get in before school. Honestly, we waited 18 months because I wasn't sure I wanted the label... bbl as Matilda is screaming

  5. #77

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    Thanks for that gals. I know you know how scary this is. I guess part of me doesn't want to believe because we don't have the tanties and things. And because I don't want it to be it. But I think DH and I are both slowly realising that there are other signs and that ignoring them is not going to be any help in the longer term.

  6. #78

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    The thing is, there are other things that fit on the spectrum, that don't necessarily fit the "autistic" ideal. I mean, the sensory issues can be totally separate from "autism"... or they are a symptom of it. Asperger's can be seen as ADD or ADHD unless assessed properly due to similar characteristics.

    Its worthwhile getting the assessment done by people who are in different areas of speciality. So the OT, physio and speech are core in the diagnosis. I mean the physio result was what floored us and made us rethink what was going on with Matilda.

    FWIW... I have friends with extremely gifted children who have been diagnosed with ADHD who actually were just extremely gifted with sensory issues! I know children with Asperger's who are extremely gifted as well, yet... quirky.

  7. #79

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    Mel honey...yourve taken the hardest step to take....your reaching out and asking for help hon. that in its self is an indication from you that you know and feel something isnt the 'norm'.

    Please dont think that the 'label' word is as horrible as people make you believe (or yourself ;0 ) I personally was so scared of the 'label' and thought it would put wall's up around Wilhelm and us as a family but if anything honey...its helped push wall's down and make beautiful pathways to greener fields for Wilhelm to play in.

    Yes, its been hard as a mother to realise that my child isn't like other chldren, but then I look at the other side of the coin and think, my child is unique, he's an individual and there will never be another one of him. He has taught me so many things about the was I see the world and other's around us. I use to be an agressive, negetive person and I feel that Wilhelm has made me see things in a brighter more positive light. Yes times are hard and things are different to other children's lives but I dont think I could know WIlhelm any other way.

    My advice in regards of getting the testing...between now and when you go, get an exercise book and write down his little traits and do hickies......dont read it for a while...just keep writing in it and when you go for your appointment take it with you.

    I will warn you..honey...and please dont think that the do's and accessores are doing it to be horrible but the diagnosise is always worst case senario. They always base what your child would do at his worst. It seems belittling and degrading at the time and be prepared to cry (I howled like a biartch) but if it allows the help to be there for your child...do it hon because ever bit of early education and help really does help.

    I was once given the best advise that I thought at the time was jsut plain stupid...I was told in order to move on and be there for my guy that I should sit and finally grieve the child that he never was. Its very hard to take in that something is wrong with our children and its the most natural thing as a mother to blame our selves. Its also natural to feel like we have lost the child that was completely normal but quirky in our eyes after a diagnosise. All off a sudden we have a child with Autisum/aspergers ect..a completely new ball game. So please honey...allow your self to grieve and heal to make the future brighter.

    I wish I could give you a hug...or even just share a cuppa with you about this. Its so hard to put tears and a heavy heart on the screen.

  8. #80

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    Maz I will do it for you!!!

    Mel, like Maz said, over the last month I have had to totally grieve my "normal" Matilda.... I've howled and sobbed and hid under the covers for a day. But I think now I look forward to learning about the world through her eyes. How she see's it.

    Off that topic for a sec... do any of you notice that when you get together with other ASD kids that the kids tend to "get" each other? So even when they don't play well socially with "normal" kids, they do okay with other super kids? Matilda has had 3 plays with week with other kids on the spectrum, and they were all wonderful. 3 days at Montessori were horrible socially, and then she played with one boy with high functioning Autism and they got on like a house on fire. We didn't understand what they were doing, but they loved it. Today we went to a house with a boy with Autism and his brother had Aspergers and they all did so well together. Chasing and jumping on the trampoline, holding hands doing ring-a-rosie... stuff they wouldn't normally do with "NT or normal" kids.

  9. #81

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    YES YES YES!!!!! sorry got a little excited!

    I get together with 3 other mum's and we all have boy's with autisum and the 4 of them barely talk together (bare wilhelm who dribble shiat all the time), they dont invade each others space BUT play extremely well together. they run together, and everything you said Christy. Whcih reminds me..maz has to organise a get together with them again soon.

  10. #82

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    Thank you Maz. And Christy. And Raven. I will call the hossy on Monday and see what they say. Maz, I did do a list of sorts a while ago to sort out in my head what to tell them about if we got an appointment. But when I saw it all written down it scared me. I think I might ask the lady if I can fax it to her. Let them decide whether to escalate or not. But I'll talk to her as well. She was really lovely on the phone last time.

    Christy, I think that's why J gets along so well with the trouble maker at day care. I think J senses that he is "different" too, and responds to it. My friend was saying that in primary school, her autistic son was the only person who could relate to a child with ADHD. So much so that the teachers would ask him to calm the ADHD boy down when he was upset - and it worked every time. That must be so good for you to see M playing so happily with other kids. Mind you, she's always been really great playing with J too. And J with her. (I'm not reading anything into that BTW!). Actually M has played really well most of the time I've seen her. She really is a great kid.

  11. #83

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    Just posing quickly to let you guys know that there is a man with Aspergers (he is almost blind too) on Rock Wiz tonight right now.
    I saw a bit of a doco on him during the week and almost forgot about the show being on tonight.

  12. #84

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    Its Maria and she's lovely Mel!

    Ohhh... good thing we are daylight savings Raven... I'm watching Iron Chef!

  13. #85

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    shiat what channel?????

  14. #86

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    SBS mate!

  15. #87

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    Yep Christy, it is Maria. I didn't know if she was the only one. See seemed so nice on the phone and was really helpful.

  16. #88

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    The behavioural unit at the mater is quite close and Maria organises all the appointments for incoming appointments and all the phone calls admin stuff. She works closely with the paediatricians. She's the one I phoned when Matilda's behaviours got worse again and I was concerned because things changed in the months between assessments. She had a paed come into the physio appointment just to observe Matilda.

  17. #89

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    Wow, she sounds great. It must make it easier having someone like that there.

  18. #90

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    Sorry I didn't say what channel. I was watching it and scarfing a McChicken at the same time I also had to reef the macbook out of Trevs grip so I could post
    I thought he did well! His thing is 80's music as that was his teenage years and he can tell you the top 5 for any date in the decade.

    Mel I wanted to say that quite often what one would think are typical traits isn't what stands out when they are assessing. eg you say that he makes eye contact and doesn't really throw tanties. Mason was the same most of the time. Eye contact was never a problem and he never really had tanties but when he did they were whoppers!
    It won't be one or two "typical traits" that will form his diagnosis but the combination of his quirks and how he interacts with people.
    Writing them down will help a lot as I got quite stressed and go blank when I was chatting to the ped and other specialists and they asked me about some things so I had notes to refer to then. Also things that he used to do but may have settled down on doing eg Mason and lining up his cars in exactly the same order along his pillow every night before he's go to sleep.

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