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  1. #481
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    Quote Originally Posted by White Mage View Post
    Today I have both the boys NDIA meetings. Send me luck. I am almost ready for battle.
    Good luck!! I’m sure being well prepared will help immensely.

  2. #482
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    Best of luck @White Mage

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    Quote Originally Posted by White Mage View Post
    We prepared DS2 mainly with a visual story going over every step he will encounter, we read it every day, and took it with us when we went. He was able to cope better knowing what he was going to expect.
    He also watched a lot 'plane take off' clips on youtube.
    WE also brought gadgets.. lots and lots of gadgets, and chuppa chups.
    DS1 we brought noise cancelling headphones and made sure he was near the window.
    @Whitemage thank you for the suggestions. Will try this and let you know. Hope your NDIA meeting went well

  4. #484
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    White Mage is online now Today has been cancelled, go back to bed.
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    Quote Originally Posted by Greycloud View Post
    @Whitemage thank you for the suggestions. Will try this and let you know. Hope your NDIA meeting went well
    No problem. If you are good at drawing you could make a cute little informational story, and using actual photos of people and places can also be really helpful

  5. #485
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    White Mage is online now Today has been cancelled, go back to bed.
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    SO I needed a few days to reflect after the NDIA meetings..
    It has been a comedy of errors....

    So where to start...

    Back in August DS2 was approved for an early review... I rang up every so often to see if there was any progress to review date.
    Come early October I get a phone call from NDIA to book a review meeting for DS1. We went over my calendar and we chose for October 28th. Come October 28th, DS1 came with me, and I was prepared with up to date reports from his O.T, Psych and Speech thereapy, and an observation report from his Aid at school, and NOTES to a meeting helf with all 4.. I got to the office and was told there was no meeting for October 28th.. But it was for November 28th, the lady who spoke to me booked for the wrong month....I gave the reports to my LAC and Ds1 scored a day home.
    As November clicked by I became extremely aware that Ds2's plan was ready to expire in the first week of December, I kept ringing and they told me there was no available appointment, even though he was approved for an early review back in August..... Fast forward to Tuesday the week just got, NDIA call me and tell me, OOPS it seems Ds2 was lost in the system, but here is an appointment on the 28th of November... Right after DS1's. 2 days later. Because his plan expires next week, we had no other choice, or else his plan would be delayed in the system by a month...
    Even though my specialists were prepared to have everything ready, they were not prepared for 2 days notice before a meeting..... BUT everyone pulled through reports were ready for November 28th. And by sheer luck my O.T was able to accompany me for the meeting after her midday appointment cancelled...

    We knew DS1's meeting was going to be easy, same plan just an increase of therapy funds so he could go to Psych fortnightly instead of monthtly. She then asked me about reports, I told her I had given her the reports the month before. She looked blankly at me and didnt remember I had done that, so spent 10mins looking for them. This is why You should always carry duplicates, because they DO lose them.
    Ds2's meeting though, would be an uphill battle. Because he is more complicated. And needs more.. And if you need more, you need proof.
    Because these meetings were held with the same LAC the meeting was back to back with no break. And she was rushing us through DS2s meeting. And we had a lot to discuss. Infact after we completed the questionnaire section she shut down her laptop. My O.T was getting annoyed because the LAC showed very little possible interest, and understanding of the maginitude of the situation. And because she was rushing us out of the room, my mind went into panic mode and went blank. My O.T was brilliant and we managed to get through it all. However due to the LAC's possible lack of understanding and what seems to be a lack of information regarding the things we requested, I feel DS2 is going to miss out again...
    In 2 ish weeks, I will hopefully will know the out come of this meeting.....
    Last edited by White Mage; 30-11-2019 at 15:23.

  6. #486
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    Oh geez @White Mage I hope they come through with the goods for DS2 🤞

    Our review isn’t until March but I’ve already received a letter to prepare us for a meeting in January

    I’m going to push for funding for a social skills class this time.

  7. #487
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    Hi, I am sneaking back into this thread after a very long absence to give a update on my eldest Asd child. Dd2. I hope it might be a kind of encouragement to struggling in the early stages like we did. Dd2 had a lot of early intervention (speech, ot and physio being the main in early years and pysch in the later teen years). She really struggled at school especially in those primary years. She has asd, spd and sad.
    Fast forward many years.... she graduated high school recently after a huge year for her. She had facial reconstruction surgery in the week 2 of this year and a chunk of time off and struggled talking and eating for a while. She graduated with dux in one of her subjects and she got the principal award.
    Back to the reason why I came in here. Today we received the news that she got a scholarship from a Monash University. The Op's (qld version of atar) don't come out for a few more days so we were shocked.


    Hopefully someone out there will be encouraged by our experience.

  8. The Following 5 Users Say Thank You to LoveLivesHere For This Useful Post:

    babyno1onboard (05-12-2019),Bluebirdgirl (05-12-2019),LoveMyWay (05-12-2019),Mod-Degrassi (06-12-2019),White Mage (05-12-2019)

  9. #488
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    That is wonderful! Congratulations to your daughter and family as I’m sure it’s been a team effort for most of the way.

    Do you mind if I ask how old she was when intervention began with ot etc and if she’s ever taken any medication?
    My asd kids bar one atm have all needed anti anxiety meds.

  10. The Following User Says Thank You to Bluebirdgirl For This Useful Post:

    LoveLivesHere (05-12-2019)

  11. #489
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    She started ot/speech and physio in prep.
    She never had aniexty meds. She has been offered once when she was in middle primary and i said no we wanted try other routes first and than again twice in high school but she has always point blank refused.

    Dd1 has been a few diferent ones as a late teen/early adult. She has bi polar and severe SAD's amongst other things.

  12. #490
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    Quote Originally Posted by LoveLivesHere View Post
    She started ot/speech and physio in prep.
    She never had aniexty meds. She has been offered once when she was in middle primary and i said no we wanted try other routes first and than again twice in high school but she has always point blank refused.

    Dd1 has been a few diferent ones as a late teen/early adult. She has bi polar and severe SAD's amongst other things.
    How did you manage her anxiety without meds?
    My 11 year old isn’t on meds. He has anxious outbursts but not constant anxiety like his siblings. Which is why I haven’t wanted to try them so far. As he’s getting older though so many more things are triggering him.
    Sorry what is SAD? I will try google


 

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