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  1. #51
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    Quote Originally Posted by White Mage View Post
    Both my boys got level 4 funding. From what I hear that is a difficult feet getting lvl 4 funding.
    From what I am told lvl funding should give you full time care. But ds1 is getting about 2-3hrs a day. Main****** pool their funding to share amongst all kids, even if your kid may need more hours.

    Ds2 is at a special developmental school so his aid is a given.
    We are aiming for level 4 when we did the SSG meeting... hopefully we get it. DS is getting better with school but i wanted him to attend more than 2 hrs my husband is having a problem with his work because he is always late for work. He works in the arvo and I work in the morning so we swap at looking after him when he finishes school.

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  3. #52
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    Quote Originally Posted by White Mage View Post
    @sajimum it always seems to be a busy time this time of the school year, jut trying to get back in to routine.

    I have had quiet a few meetings these past few weeks.
    Had the O.T and Speech therapists come from EACH to discuss therapy for Davin. As this is all new stuff through NDIS funding. I am a little excited as the Speech therapist is someone who had seen both my boys in their early intervention program when they were toddlers/pre schoolers. So good to have her back.

    I went to a School Council meeting about a new legistlation from the education department, concerning how they would like therapy sessions to be run from now on. It's looking grim and I can honestly say there wont be any therapy this year for Keiran at school.
    Our Speech therapist for Keiran is working on making appointments outside school for me to attend. And our O.T retired. So now looking for a new O.T for him.

    Had BOTH SSG meetings this week, and both went pretty well. I think we are all on the same page.
    @xanadu29 Fingers crossed on your results! It's always so nerve wracking for things like this.
    I'm interested in the new legislation you mentioned. What does it state? DD had OT visit during school hours in Prep. Is this not allowed under the changes? Does it relate to private practitioners, or just school-based therapists?

  4. #53
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    Quote Originally Posted by sajimum View Post
    I'm interested in the new legislation you mentioned. What does it state? DD had OT visit during school hours in Prep. Is this not allowed under the changes? Does it relate to private practitioners, or just school-based therapists?
    Up to now allowing therapy in schools was fully up to the Principal's discretion on if the therapy could happen. In fact this was one of the many reasons Ds1 was enrolled at this school.

    SO The legislation requires that the room of therapy have 4 walls, a window, with complete ability for observation /eye of sight of a staff member/faculty. And a Door for privacy. (DS1's school is currently under full renovations at the moment... It's chaos, but even once the renovations have been completed there still is no room that will be able to be used 5 days a week, as the government funding for school structures were focused on 'educational space' not anything else, hell they didn't even get space for storage)

    A staff member must be present at all therapy sessions being held at the school. (You can not use your NDIS money to pay the school aid to be that person, it is apparently, illegal.
    An additional staff member to be accounted for all therapy sessions means more funding to cover said person, which the school does not have. We are currently rocking at 30 kids using the therapy program, and expected to rise as more and more students are brought into NDIS. And not even you the parent can sit in on these sessions even with a children's check, because you still need a staff member there)
    All therapists that do come to the grounds, must under go a certain type of training that is sort of the equivalent of a children's check, but more.. intensive.

    The education department has apparently been introducing this slowly through out parts of Melbourne. And many schools as we have been told have dropped there programs because the guidelines for the new legislation are hard.

    This does not just effect people who are receiving NDIS, but anyone who needs therapy through school.
    We at this present moment have been told that this year there wont be any therapy.

    Ds1 has his private therapists visit the school. His Speechie has arranged for after school visits at home. And our O.T retired as a result of the NDIS rollout being too difficult.

  5. #54
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    Went to school to pick DS2 up at lunch and today DH was with me for the first time since the start of term and he couldn’t have picked a better day for his RDO to be able to come. The special ed coordinator spent the day with Charlie (I think she has a soft spot for him she told me she has major anxiety about him when he has to be with a aide and not her) and she videoed him throughout the day and each video showed vast improvements in his fine motor and social skills as well as his schoolwork. I nearly cried when I saw the video of him interacting with other kids at different points and the kids actually wanting to interact with him and not pushing him away. When I pick him up early he always has kids come running over saying goodbye to him. I love that he is adapting so well but I still can’t help but worry and count down until it’s collection time

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  7. #55
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    I love this @loodle I hope that your son will continue to improve! You are so lucky to have a very good teacher! I am so happy for you!

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    @White Mage thanks, that's interesting. I asked DD's teacher about it during our ILP meeting on Friday and she wasn't aware of it. She says the school is still having therapy sessions there for a number of kids as far as she's aware. Maybe it hasn't hit our area yet!
    @loodle that's such great news! How helpful for them to have videoed him for you so you can see his improvements. I'd love to be a fly on the wall to see what DD gets up to at school!

    As for us - ILP meeting went well. It was nice to catch up with DD's teacher as I haven't had a chance this year yet. She's the same teacher as she had last year so knows her very well. DD adores her. She also confirmed that DD has been playing with one of the boys in her class - DD has spoken of him alot so it's nice to hear that the feeling is mutual!

  9. #57
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    @pvroom I totally understand.. I feel like people are viewing what I am saying is complaining, when it is my reality. Thats my every day life I am talking about. And when it is something that is upsetting or frustrating me, it is dismissed. And I realise it is more that no one can relate to what I am telling them.
    I feel like I honestly got a crap deal and some times feel like nothing in my life will ever be normal. Especially at the daunting thought that ds2 could be living with me for a long time..
    Things do improve with time though, ds1 is proof of that for me, it just means ds2 will just take longer to get there.
    I remain hopeful and try not to think too far in the future.

    Congratulations PVroom that is exciting news, and me telling you not to stress wont help you, but all I can say is take it easy.
    Can I ask do you see a psych just to chat with? They might be able to help you through all this.
    @sajimum I had no idea about this until the week before the meeting. It was a big shock. The school only got word about it earlier in the week. It doesn't surprise me you havent heard about it..

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  11. #58
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    @pvroom I'm sorry to hear things are tough at the moment. It sounds really full on and it's no wonder you're feeling anxious given everything that's going on. Good on you for speaking with a counsellor about it. That's something I've found really helpful too.
    I think it's hard for other people to truly 'get it' when they aren't living in your situation unfortunately.

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    Quote Originally Posted by pvroom View Post
    @sajimum thank you. Yes unfortunately people don't really get it and that's what makes it really hard I feel. They think their child is equally challenging or they don't appreciate the nuances of ASD or speech difficulties and think it's 'not that bad'. It's hard
    Are you a part of any ASD groups on facebook or in person somewhere? I've found it really helpful to get advice from other parents in similar situations and the advice of autistic adults is often invaluable! It's nice to talk to others who understand.

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    Quote Originally Posted by pvroom View Post
    Yes I am, I find them helpful but a lot of ASD parents haven't had NICU babies, some don't have kids with medical problems either, so it can be a bit isolating as we have so many factors influencing our day-to-day life. I've put my name down for a local parent support group so hopefully that helps a bit.
    Fair enough. I can see how the co-occurring medical issues create additional difficulties/issues. Hopefully you can find a group that suits.


 

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