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Thread: Joint medical guardians requests about Grant's videos on youtube.

  1. #1
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    Cool Joint medical guardians requests about Grant's videos on youtube.

    G'day neuro buddies anticipating the latest installment of Grant's video spectaculars :)

    Here is the goss.

    We arrived about 10 minutes early to enter some very posh offices; even the toilets were very posh :)

    Off we tootled into a small meeting room. The joint medical guardian (JMG) Joan and her superior had by chance, (I don't think it was not intentional) ,a computer connected to the internet and a big screen on the wall (AHA, I thought to myself). John, Grant's advocate when he was 18 was also present.

    We chatted for about 3/4 of an hour regarding the videos.

    Because their computer was connected to the internet I showed them the youtube video of Grant that is still up. This is the one of photos of him as a baby up until the age of 18. We played it as his school graduation. Everyone was very impressed and thought the video was perfect. Absolutely nothing there that was distrubing for the JMG :) They agreed that it was a great story. Here is the link folks. Make sure you have a look if you haven't seen it before and make sure you turn up the volume :) http://www.youtube.com/watch?v=fiZGlwj6VCQ

    I am glad that Alison came, because at her school there has been a lot of discussion about the internet and the dangers involved in uploading something to aforesaid service.

    The JMG's themselves had recently had an expert in to discuss the dangers of the internet.

    Their concern was mainly along the lines that Grant should not be shown in medical situations, such as PEG feeding etc. Now before everyone gets hot and bothered at their request, let's look at bit deeper.

    Anything that is posted on the internet is there forever. Once it's up, it's up for good, even if it is taken down by the person who uploaded it = absolutely true.

    There are many weirdos on the internet, kookie folk who are not the full two bob, who might download one of Grant's medical videos, for strange purposes. We have even had a few weirdos on our neuro forum over the years haven't we = absolutely true.

    During the discussion I could see that the JMG's reasons for restricting the content of Grant's videos made a lot of common sense. Neither Alison nor I saw any point in arguing or trying to change the JMG's minds. When we went to the meeting our hope was that we could keep Grant's photo video online. Well we can do that :) But we can also upload videos of Grant having outings, etc, provided that we don't put any videos that are medically related up = perfectly okay with us.

    WE MUST REMEMBER

    It is important to realise that I am Grant's guardian, administrator and joint medical guardian, and because of that Grant does come under Australian guardianship laws. Although we would have loved to adopt Grant before he turned 18, the foster agency said at the time that we should not adopt Grant under any circumstances, as all the financial support that he got as a ward of the state, would dissapear almost instantly. So we didn't adopt him. Grant doesn't mind. He is our son even if not in name or on an adoption paper.

    PROS AND CONS

    PROS

    The JMG is joint medical guardian with me. This is really as good as it gets. No hospital messes with the JMG.

    The JMG will if necessary bat for Grant and intercede on medical issues if they need to, which is of course absolutely superb.

    The JMG is available 24/7 365 days a week by me or a hospital or nursing home (if Grant was having a break in a nursing home). Doesn't get much better than that does it.

    CONS

    Almost none, except that I do have to toe the line regarding JMG's wishes regarding divulging medical stuff about Grant on the internet.


    GRANT THE TRENDSETTER


    As you know Grant is the trendsetter for the disabled. He really is. The JMG said that in her 17 years as a JMG this is only the third time that there has been a VCAT order for her to have joint medical guardianship. Grant does it again :)

    When we look back at the terribly stressful time early last year, we can now see God working in the background to bring the JMG on board. Praise the Lord for that provision.

    Seeya at the video eh :)

    Paul, Alison and Grant the champ trendsetter :)

    Ps. Rose thank you so much for all your comments. You spent a lot of time writing I know. But I don't think there is a need this time round to comment on your excellent observations. We are very happy with the outcome from the meeting.

    PPS.

    NO LONGER SIAMESE TWINS

    When the VCAT order was made, John who was Grant's advocate when he turned 18 said to me that I had to be a Siamese Twin with the JMG. Everything that happened to Grant, absolutely everything, xray, local doctor visit, had to be reported to the JMG because I was on trial big time. One mistake from me and the joint JMG could have gone back to VCAT and try and have me removed as joint medical guardian = crikey. Well you will be pleased to know that JMG are 100% happy with my medical responsibilites in caring for Grant. The chances of me not giving Grant his medication, the accusation made by the hospital laywer who wanted me removed as guardian (I have always given him his meds) is about as slim as an ant in the Sahara desert writing Einstein's theory of relativity in the sand, Euclid's elements possibly, but Einstein's relativity theory, never :)


    In fact the JMG are so happy with me that I now take Grant to medical appointment without a JMG present :) I have earned my brownie points :)
    Foster parent, now medical guardian and administrator
    for Grant the champ aged 30, yes 30!

  2. #2
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    Ah, all good news. So glad things worked out. And so true about the internet. That is why I basically never upload ANYTHING.

  3. #3
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    HI Paul, I'm so pleased about this - it all makes perfect sense and I am so pleased also that you feel supported by JMG and company. I think that I wouldn't like medical procedures with Nicholas on the internet either - maybe we can have a think and a conversation about this here? It's a very fine line, wanting to educate others and demystify some of these procedures while protecting our kids from bad people and others who might judge us and our families harshly. So glad it was a good outcome!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  4. #4
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    Thumbs up

    ((((((Paul, Grant & Alison))))))

    My predominant concern was that Grant was afforded the freedom to be like any other young man his age. That is why I was curious as to their disapproval of Grant's videos. Their reasons are certainly sound and do make sense. I'm glad that you are in agreement with the JMG and that they acknowledge you as the wonderful Dad and caregiver you are to Grant.

    I am extremely protective of my own and my children's privacy on the internet. That is the main reason why I am not on Facebook. And I have no videos on YouTube or anywhere else on the internet.

    In the pre-internet days, my boys and I were featured in newspaper articles and on local news channels, when we fought for educational rights or social services. I always worried that I might be exploiting my children in some way by being that visible, and it was often an internal battle for me to decide how far to go. The last time we were the focus of a newspaper article, I refused to allow the reporter to visit my children or to take photos of Michael in bed with his feeding pump. The interviews were conducted over the phone.

    So, I completely understand JMG's viewpoint, and the "fine line" mentioned by Donna.

    Meanwhile, The Champ is well and thriving. And that is answered prayer.

    Love & Light,

    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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