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  1. #871
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    White Mage is online now Today has been cancelled, go back to bed.
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    So I am going to take my time writing this out.

    To start we took tours to 2 schools, both 'recommended/suggested' by our key worker from EI. She accompanied us on these tours to help us ask the right questions and get as much information out of them as possible. We took DS1 with us to see his reaction to environment.
    I wrote GIANT Pro's/Cons lists for both and it seems like the first school we saw was by far the better choice. Educated staff and principle.. infact the principle was asking Keiran if the noise in the music room was too much for him, and when Keiran said no, he didn't open the door and explained things to us out in the hall. Keiran was pretty overwhelmed but was more willing to do the first school then the 2nd, the 2nd he certainly showed that he was more uncomfortable with his surroundings. The principle at the 2nd school gave us a deep impression that he was more concerned about what WE can do for them, more then what they would/could do for Keiran. We were filling the blanks, they weren't. And well, in the end it felt like we were wasting HIS time. The moment we informed him that Keiran had been diagnosed, it went downhill from there, and he didn't say it directly but he was concerned on how much Keiran may disrupt the class... He did not show us much of the school. It was evident he did not want us there. Really sad...
    So the first one was the best choice by far on several things, the clincher was there are LOTS of special needs kids in this school, and the fact we couldn't point any out, says to me the kids are very comfortable in their surroundings that they concentrate well. I was very impressed.
    So, I will be enthusiastically filling out his enrollment forms. We are now waiting on the list to get his assessments done. (cognitive and speech)

    DS2 now.. From what I mentioned a few pages back, he was referred by our ENT for Royal Children's for his procedures, I found it odd 2 weeks on that I hadn't received a notification that the referral hadn't been received. So I called up and low and behold they didn't have it. I know the clinic had, I was there when they faxed it. The clinic needed a fax number, so I called the RCH, and round and round and round and round I went on hold in different departments just for a stinking fax number. And it was faxed, the clinic told me to call the RCH the next morning to see if it had gotten there. So I did.. The man at the RCH Specialist call centre told me it would take 5 days for the referral to be received.. WHAT? So he gave me an email... I then gave it to the clinic, they emailed it while I was on the phone to them. I waited 1hr to receive an automated message, and I called the RCH..
    "Oh he isn't listed... "
    "Um the clinic sent a referral via email 1hr ago"
    "I am going to put you on hold"
    *20mins later*
    "We found him, here is your patient number"

    Thank you! and 5mins later, I officially receive my automated message.

    Holy crap I am glad I called them now, I could of gone months and not known they hadn't got it.

  2. #872
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    Hi ladies,
    Gosh I'm struggling, I feel like we are getting nowhere. Last night DH was telling me about a family in America who got removed from a plane, the plane made an emergency landing to remove the family because their 15 year old daughter who is autistic wanted a warm meal and the mother had told them that she was going to have a melt down if her meal wasn't warm and she could scratch someone. They got her a warm meal and she was fine but they removed the family because they thought she was a danger to the other passengers.... She was 15 years old and she couldn't tell them what she wanted. It just sent me into tears, For the family and for my own self pity, DS is still not talking, he is only 3 and he does say some words but I had just spent an hour with him screaming at me holding him to go to sleep because he won't go to sleep any other way, he would stay awake all night long if I didn't hold him. And then he woke in the middle of the night for 2 hours. I am tired! He is getting harder, he hits me all the time for nothing, he will just come up and punch me in the stomach or leg or butt if I am standing somewhere, if I am sitting on the couch or the floor he will often get behind me and kick me in the back. I'm so over being kicked. I feel like nothing we do is helping him. At our last psychology visit he said that he thought DS could be extremely strong willed. What? What is that? How do you deal with that? The psychologist is reluctant to give him a diagnosis, but I don't think anything is going to change in 6 months. Everything seems to be upsetting DS lately, I can't work out what he wants, even the speechy thinks she can't help him anymore and won't be seeing him for another 3 months. I just feel so deflated, I find myself wishing he was 'normal' more and more and then I hate myself for that. He has never been 'normal', even when he was a baby and I went to mothers group, the other kids sat and played with the toys their mums took, DS would be off exploring the house and all the things in it. He did everything so much earlier than the other kids, rolling, sitting, crawling, standing, walking, he was off like a rocket. Then just stopped and now they have all passed him, he has amazing motor skills, both fine and gross but everything else is taking so long. My twins are now starting to pass him as well.

    I'm struggling to be positive about him. I love him don't get me wrong, and sometimes he is fun and affectionate but i am just struggling to see the awesome in him at the moment and I hate that all I can think about is what's 'wrong' I just wish I could help him find a way to communicate. Or understand him.

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    @bigZ

    I'm upset for you that you're having trouble having your DS diagnosed - he sounds like he really needs help, and so do you.

    Just want to reassure you that a lot of parents experience very challenging behaviour from 3 year olds - ASD or not. My DS was really, really difficult at that age - lots of meltdowns, everything was a battle, he was pushing his own agenda constantly. It's just so much harder when they can't communicate effectively.

    Can you get a second opinion or a referral to a different psych, or a paed? Don't give up - you will see positive changes in him when he gets the help he needs

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  5. #874
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    I am in the same boat @bigZ. I'll come back and reply more.

  6. #875
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    Zombie_eyes is offline Formerly Diamondeyes
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    Hugs bigz

    Has the psych given you any strategies to deal with unacceptable behaviour like hitting/kicking etc?


    We did the triple p parenting program modified for special needs with our ds#2 because he was out of control. We had made so many allowances for his behaviour because of his diagnosis, the psych said that diagnosis or not, negative behaviour has to be dealt with. Totally changed my thought process regarding my kids. We are all much better off for it.

    I think u need a new psych. 3 is not too young for a diagnosis. Its crazy he is hindering your ability to access early intervention.

    What does speechy say about his receptive language? His comprehension?

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    I didn't even know I had to ask about that, the speechy just said we'll see him again in 3 months and see how he is going, just keep doing what you are doing.. We have been doing what we are doing for almost a year and it's still as frustrating as ever. Most days he starts off ok then 10 minutes into it he's over what we have been doing as his is with her now. All she said was he is making improvements and we'll see how is in 3 months and if he needs more intensive treatment then. I told her that was fine coz I felt a bit like we were just paying to watch her play with him for half hour.

    The psych has really only told us to firmly tell him no and redirect him. He has just done the training for triple P and said he was signing us up for that.

    We started off at the wrong kinder and moved and that is so much better maybe I need to consider that we need to change psychologist and speechy too.

    We have just been assigned an early intervention key worker. I don't even know what that means, I feel so stupid I don't know what anything is what I should be asking, she is coming Thursday I am worried I am just going be a blubbering mess when she gets here.

    I just feel like crying all the time at the moment. I had a good few weeks where a handled it all ok but I've crashed again. I feel like a yoyo up and down every day. It's hard to catch my breath on the down days.

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    3 is not too young for a diagnosis, is there anyway you can take him to your State's Autism board (if that is what you think it is) and have him assessed through them? It does cost money, last I checked ASPECT in NSW was $1000 I think with $300 back on medicare - it goes up every year as well so that was a couple of years ago. And it is a big amount but - you will get an answer on the day and if it is ASD, then they organise your funding and give you loads of contacts. The funding doesn't tai long to come through and then you'll be able to access private speech, OT and phsyc and they don't just leave you to "get on with it" for 3 months!

    Quote Originally Posted by bigZ View Post
    I didn't even know I had to ask about that, the speechy just said we'll see him again in 3 months and see how he is going, just keep doing what you are doing.. We have been doing what we are doing for almost a year and it's still as frustrating as ever. Most days he starts off ok then 10 minutes into it he's over what we have been doing as his is with her now. All she said was he is making improvements and we'll see how is in 3 months and if he needs more intensive treatment then. I told her that was fine coz I felt a bit like we were just paying to watch her play with him for half hour.

    The psych has really only told us to firmly tell him no and redirect him. He has just done the training for triple P and said he was signing us up for that.

    We started off at the wrong kinder and moved and that is so much better maybe I need to consider that we need to change psychologist and speechy too.

    We have just been assigned an early intervention key worker. I don't even know what that means, I feel so stupid I don't know what anything is what I should be asking, she is coming Thursday I am worried I am just going be a blubbering mess when she gets here.

    I just feel like crying all the time at the moment. I had a good few weeks where a handled it all ok but I've crashed again. I feel like a yoyo up and down every day. It's hard to catch my breath on the down days.

  9. #878
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    I'm having a horrible week and @bigZ you have described it almost to the letter except that ds2 is only 2.
    I finally have the pead in side though. She is sending us for screening. It could take a few months but I don't care. It's a start.
    If you need to change speechy then do it Hun. Ours is like an aunty and does nothing really with him is all teaching me what to do. We are also working on PECS at the moment.
    It might help you to. Ds2 has speech delays and the photos really help him talk to us.
    We are also looking forward to doing the hanen program again in a few months.
    I have to go again but I'll come back when I get a chance. (hiding in the bathroom)

  10. #879
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    Zombie_eyes is offline Formerly Diamondeyes
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    Agreed; visuals make a HUGE difference here.

    If i need to change dd's nappy and she wants to play on her ipad i show her a photo of her nappy and wipes and say "bum change first" while holding the photo." And then ipad" and show her a picture i took of her on her ipad.

    If i just use words she switches off at me saying bum change... And turns into a screaming mess. If she can see the visual she accepts it a heck of a lot easier.

    I spend hours and hours one day just taking pics of EVERYTHING. And of her doing things too.

    They are so cheap to print at big w.

    I laminated them and have them in different categories. Everything i prepare before i spring it on her. And i also have velcro dots on them and the dots on my pantry door which has her daily routine in visuals.

    We are also teaching dd some basic sign language as she displays selective mutism. So we have taught her "help me" "stop" "more" "finish"

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  12. #880
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    Yes that's PECS. I'm taking photos of things at the moment but I do maybe 5 new cards a week.
    Every speech therapist should know about it and be happy to print out the cards.
    We are doing the Velcro dots to. I'm even putting them on my purse. It had to be something I can take every where. Daycare will have them to.


 

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