thread: Aspergers/Autism/Sensory Integration Chatter #4

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  1. #1
    Registered User

    Dec 2005
    4,840

    Right Im back with 5 mins of peace (thankgod for ABC2!)

    So we've been waiting to find the $$$ to get Ripleys assessments done. Its been a nightmare especially because we are on time constraints as we are moving in June. The child psych we saw recommended having two cognitive assessments done and the ADOS, but to do it with them it was going to cost us $2000 (yeah I know ). So we've just left it and tried to save up but things just keep cropping up that eat at our savings.

    Fast forward to today. I did some begging and pleading around the traps and managed to find a psych that will do the cognitive assessment (only one of the two) for $400 (heavily discounted). Seeing as Ds2's behaviour is getting worse Ive decided to just book it and go from there. So we are heading off on tuesday () at 9am for the Stanford Binet testing. I found a different psych that does the ADOS assessment over 4 1-1.5hr sessions for $180 each appointment and if you have a paed referral you can claim $80 back each appointment. So Im going to book that for whenever the next available appointment is. Atleast then it isnt upfront $$$, the only downside is it'll take around 1-2mths to finish up and get the results.

    Im terrified theyll find nothing abnormal even though everyone, including the current psych and speech therapist, say its plain to see he's not normal. We've just got to figure out HOW he isnt normal and that where the assessments come into play.

    On top of that, his daycare teacher has pulled me up twice about his lack of interaction with the other kids. He has been going to this daycare since Sept 2009, so well over 18mths. He just moved up to the preschool room in January but he moved up with a bunch of his friends from the nursery room so its not a case of not knowing anyone or moving to a new environment, he even knew the teachers from when Ds1 went there in early 2010. She was quite concerned given that she knows Ds2 quite well. He wont even play with his little girlfriends (identical twins, theyre all so cute together lol) anymore which is what really sent up alarm bells. He just sits off on his own and plays. He doesnt even talk to anyone, only the teachers if they approach him. Theyre going to do up a behavioural observation for me to take to whomever needs it.

    God I cannot wait for this to end. Sounds bad wanting to label your kid but it will just end alot of stress and worry and frustration of not knowing how to help him.

    Anyway I'll end it there because we have speech therapy in half hour and I have to drop the kids at my mothers before we go.

    Have a big peice of chocolate as a reward for reading to the end

  2. #2
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    Sep 2007
    travelling
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    Thats what I worry about Freya. What if there's nothing there...

    BBL, 3.30am & i neeeeeeeeeeeeeeeed sleep!

  3. #3
    Registered User
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    Oct 2007
    Eastern Wheatbelt WA
    3,282



    I had the same concerns... what if there is nothing there... what then? Am I crazy? Seeing things? All those months wasted on chasing up an assessment, how are we going to get help if he doesn't get a diagnosis. Sooo many questions and fears. I had those fears right up until I saw it on paper, the diagnosis, then I felt relief and sadness. Sad for my little boy who had to have a label just to get help (which STINKS!) and relief for the help that we will now get.

    you'll get there guys, it's a long road but once you get to the top it does get a little easier.

  4. #4
    Registered User

    Feb 2009
    2,031

    Skye, We are in the 'assessment stages' too, but there isn't a person I have spoken to who isn't utterly convinced that Princess is spectrum.

    Something stuck out for me there. Princess is loud. All the time. They did hearing tests but her hearing is fine (and she can hear me whisper the word chocolate 3 rooms away!) but she talks so damned loud. One of the staff at the last school joked that Princess has two volumes - Loud and F***in Loud (yeah, charming, I know). There are a lot of things you have mentioned that remind me of princess.

    Ignore the teachers and get a referral for a paed.



    Freya: Good job on finding some assessments you can afford. Absolutely horrible that it costs so much to get help for children. We were very lucky that the school referred us to a paed that bulk billed and dealt in ASD.

    but yeah, everything else has sky high costs and its just so hard to think there will ever be a time where people care that she gets help.

  5. #5
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    Sep 2007
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    Its the gp I think I'll have to push HA, teachers are supporting me 100%, but thankyou so much

    I might go read up on aspergers. I don't know much about it. I know its on the autism spectrum, but don't get where it stands iykwim. She has no worries interacting with people, so haven't thought about it.

  6. #6
    Registered User

    Feb 2009
    2,031

    Its kind of in the middle, Skye.

    There is:
    PDD-NOS -> Aspergers -> Autism

    And on the teachers thing, I was referring to this part

    I would like to have her tested for ADD/ADHD, even though the school doesn't think she is. They just think she's a loud attention seeker. Always taling over everyone else to make sure the teacher hears her.
    Thats just rude! But I guess with all the troubles I have had with schools, I am cynical, lol.

    Lulu posted a thread on Apsergers, which has been stickied. Worth having a look. Also her blog, Lulu and the Cyclone, has some info on Aspy, ADD and how her boy fit in on there. Just a pity she isn't here to help you out. Also you can check out my blog on princess - uniquetoo.blogspot. Been meaning to update it with the paed apptment but just been feeling very overwhelmed atm and now I just feel sick. =(

  7. #7
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    Sep 2007
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    Yeah, I'm feeling a bit ripped off TBH that Lulu isn't here, but her posts are & they've given me alot of info so far.
    Haven't read her Cyclone blog yet. Didn't think of it. Will do though.

    Now, I have to ask. Is her needing her shoe laces done to the same tightness & her hair in exactly the same spot on each side on her head, something I should remember too?
    She's very particular & will cry til you fix it!

    ETA - I see where you mean re teachers now. Sorry I wrote that post back in December & because it didn't all just happen recently I've forgotten those bits!

  8. #8
    Registered User

    Jan 2008
    Just Coasting
    1,794

    Its kind of in the middle, Skye.
    There is:
    PDD-NOS -> Aspergers -> Autism
    Honey Aspen, what does PDD-NOS stand for?

    Earlykids, hope you enjoyed your respite day

    We have our first appointment for DD next month. I've been reading a book about Aspergers and DD definately shows some of the traits but not all of them. Just wondering what the PDD-NOS stands for and whether DD is more at that end of the spectrum.