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Thread: A Sad News Documentary Piece about our families

  1. #1
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    Default A Sad News Documentary Piece about our families

    This was Part 1 of a CBC documentary news piece on aging parents of children with disabilities:
    http://www.youtube.com/watch?v=wv666XsWRi0 Pretty sad and pretty dire.
    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


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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    Hmmm ... not sure that I can manage watching this one. Will have to ponder it awhile ...

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi!

    I watched it yesterday, very sad piece. Glad that she has a great supportive husband to help her, but wish they didn't have to wait so long for placement...20 yrs?? Wow. I feel so bad how she talked about giving up doing things for herself. Personally, I always try to sneak in time for me when I can...yes I've had to cut back on the amount of time but I refuse to completely give up and give in! But Caitlin does not require as intensive care as the lady's son does. With Caitlin, I can put in a movie and be in a different room in the house if I need to be. I know all situations are so different....it is such a shame that society sweeps these problems under the rug. I admit, that before I had Caitlin I didn't really think about it either. It's scary to wonder what services will be available when she is an adult. I do think about it quite a bit, but am usually too busy putting out the fires of today to look into anything in depth for future placement/services. I 'liked' a thing on facebook, I think it was called Wisconsin Familes Forward, so I do get updates on what my state is doing politically for and against the disabled population. That was around the time my state froze FamilyCare (how services are provided to adults for inhome care)...the freeze would have forced families to only be able to put elderly/disabled into costly nursing homes even if they didn't need that level of care. Glad that the feds forced the state to lift the freeze. That is about as much as I know though. C will have a home visit this yr for Katie beckett renewal so I am planning to use my time with the caseworker to ask about future care/services. Can't wait to see part 2, hoping there is a happier ending for that family...

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Hi guys, well, the only thing I can say is that the earlier you plan, the better. And that means financially, emotionally, spiritually, physically.... for both our children and ourselves. Scenario planning is the key - it's the 'what if' principle. But it's so hard when you are in the thick of looking after kids every day - there's no time to IMAGINE the future! But still, it is necessary. I'll post part 2 of the series now. Love to all my dearest friends here on CN2 xoxoD
    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


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    This is so sad...

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    ((((((Donna))))))

    Jim and I watched the video twice. I have written two lengthy responses, but I'm sitting on my hands.

    My reaction might be misconstrued.

    So, I will just say this:

    Appropriate in home and out of home supports should be in place for all families~those, who choose and are able to provide care at home, and those, who do not choose or cannot provide care in the home. The number one priority of all involved agencies, parents, families, friends, and medical providers should be the best interests of the adult child with a disabling condition.

    The first question is always: what is best for my child?

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Didn't get to watch it this morning the sound on my computer wasn't working. I'll try tomorrow.
    Mary Grace

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    Rose, I completely agree. I'll post Part 2 now so you can see that too. In Canada, there is a generation of baby boomers who did not plan financially or otherwise for the future of their child with a disability because a) there was no expectation for children to survive their parents - that situation is unprecedented and so everyone is unprepared and b) we have a tradition in this country of full national health care which families believed extended to social care of their adult sons and daughters with disabilities. Now, children with disabilities are surviving and we have an ageing population. Governments cannot afford to offer social care to adults so families are left holding the bag, unprepared. What this documentary does not represent though, are the success stories of families who have banded together to create innovative solutions for their kids. Lots of families have pooled their money to buy a property then created a micro board to run the home with the disability pension benefits pooled to buy home help. Home shares are another wonderful example of what works for many, especially in the UK where it's really taken off. I think though, that this FIRST generation of families just suddenly find themselves in this situation without having planned for it and that is proving to be catastrophic for many. That aside though, I thought the people in the news item were just awful to their son. I felt so sorry for that lovely young man. Sending lots of love to you, Jim and Jon on this Thanksgiving! xo
    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


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    Oops, just realized that I already posted it the other day!
    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


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    ((((((Donna))))))

    Okay. You said what I wanted to say. Thank you.

    Jim and I both felt that these parents viewed their son as a burden and with tremendous resentment. They demonstrated no affection toward him. It was all about how miserable their lives are because of the drudgery of his care, how they've lost friends, and how they have given up their own lives.

    The narrator opened with, "His home is his retreat, but it's his parents' prison." That said it all to us.

    The narrator mentioned that this young man attends an adult day program, and that they have respite care for him. So, if they are in a prison, it is of their own making, because they have those opportunities to be free to do what they want to do.

    Additionally, this young man's level of care seems pretty basic to me. He's ambulatory, he self-feeds (although not fast enough to suit his mom), and he has comprehension and communication skills. No Gtube, no special diet, no respiratory problems ...

    The purpose of the story is valid, and attention needs to be drawn to the lack of options for aging parents of adult children with special needs. In my opinion, they chose the wrong family to showcase that need, because these parents did not draw any empathy from me or Jim. My heart goes out to the young man, because I don't see any love or joy in his life with his parents. They've been looking to place him out of home for 20 years.

    What this documentary does is reinforce the stereotype that children with special needs are a burden, and that parents of special needs children are bitter.

    As you said, a better way to convey the magnitude of the crisis of aging parents and their adult children would be to focus on the innovative networking of parents, and families like yours, who found the perfect solution to meet Nick's needs, when in home care was removed as an option for him.

    Whew! There. I said it.

    Thanks for your Thanksgiving wishes! I'll be tossing the Tofurkey in the oven in a few hours. We watched the parade together this morning. We're thankful that Jon is well today, as yesterday, he had one of his mysterious fevers and lethargy. It came down with cooling baths, and it's normal today. I'm thinking hypothalamus or hypothyroid. Or both. He had no symptoms of anything. Just a temp of 100.7, which is high for him.

    I give thanks for all of our wonderful CN and BT family and wish everyone a blessed Thanksgiving and holiday season.

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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