Jonathan's Story
Viewing comments for Chapter 18 "Talking to a brick wall"Our fostering journey with a severely disabled boy
24 total reviews
Comment from jmdg1954
This post was buried in my in-box for a few days as I've been inundated with posts. Sorry for the late review.
Jonathon has now become an "asset" for the system and only considered a revenue stream in the scheme of things. Each person in this bureaucracy was only looking out for themselves, and who suffered most... Jonathon.
In your post you mentioned you've been with Jonathon 16 years at this point. Amazing!
Have a great Wednesday...
John
reply by the author on 06-Mar-2024
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This post was buried in my in-box for a few days as I've been inundated with posts. Sorry for the late review.
Jonathon has now become an "asset" for the system and only considered a revenue stream in the scheme of things. Each person in this bureaucracy was only looking out for themselves, and who suffered most... Jonathon.
In your post you mentioned you've been with Jonathon 16 years at this point. Amazing!
Have a great Wednesday...
John
Comment Written 06-Mar-2024
reply by the author on 06-Mar-2024
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Thank you John. I appreciate your caring reviews each time. The care that has been shown encourages me to keep writing his story. Thursday here now. I think we are ahead of you by about fifteen hours. Enjoy Wednesday afternoon!
Wendy
Comment from Jim Wile
You are very strong, Wendy, and very wise too to have kept those emails. If everyone there has the same attitude as that "disability specialist," I'm not sure you'd get anywhere with them. But perhaps you will find someone higher up in authority who you can persuade. I can see you taking it as high as to a member of parliament to get proper treatment for Jonathan.
The conflict of interest and the politics seem to be rampant in this organization, which makes things very difficult to deal with properly rather than expediently for them. But vigilance and courage can sometimes make a difference in bringing this to the attention of higher-ups who may care.
You go, girl! - Jim
reply by the author on 05-Mar-2024
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You are very strong, Wendy, and very wise too to have kept those emails. If everyone there has the same attitude as that "disability specialist," I'm not sure you'd get anywhere with them. But perhaps you will find someone higher up in authority who you can persuade. I can see you taking it as high as to a member of parliament to get proper treatment for Jonathan.
The conflict of interest and the politics seem to be rampant in this organization, which makes things very difficult to deal with properly rather than expediently for them. But vigilance and courage can sometimes make a difference in bringing this to the attention of higher-ups who may care.
You go, girl! - Jim
Comment Written 05-Mar-2024
reply by the author on 05-Mar-2024
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Thank you very much, Jim, for this review. I appreciate your compassion and care very much.
Wendy
Comment from lyenochka
Good for you to remain persistent! You knew what really should be done. Perhaps it is at this time, Jonathon's uncle will be able to exert some influence over the games they were playing to drum up more funding by making more of the clients tube-fed? It's just frustrating to hear but I imagine this kind of thing happens so much more than we know about.
reply by the author on 05-Mar-2024
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Good for you to remain persistent! You knew what really should be done. Perhaps it is at this time, Jonathon's uncle will be able to exert some influence over the games they were playing to drum up more funding by making more of the clients tube-fed? It's just frustrating to hear but I imagine this kind of thing happens so much more than we know about.
Comment Written 04-Mar-2024
reply by the author on 05-Mar-2024
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Thank you so much, Helen. That would have been a good idea, except I hadn't ever met him, and I didn't know if he had ever even met Jonathan, even as a baby. All I knew was that Marco had a brother who was a successful lawyer. Thank you so much for your compassion and encouragement in this thoughtful review.
Wendy
I am afraid this sort of thing does happen more than one woul
Comment from patcelaw
As I listen to your story, I am so impressed by the heart of compassion that you have for Jonathan. I myself have experienced submit things in life were the medical system was trying to push me out way before it was my time to go home. This matter fact, with my broken hip and my broken pelvis that was a very thing that they tried to do and I wound up having to pay a lot of money and the judge in the case ruled in my favor and now I'm trying to get the money back that is owed me. so I guess I was talking to a brick wall many times as well. Patricia .
reply by the author on 04-Mar-2024
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As I listen to your story, I am so impressed by the heart of compassion that you have for Jonathan. I myself have experienced submit things in life were the medical system was trying to push me out way before it was my time to go home. This matter fact, with my broken hip and my broken pelvis that was a very thing that they tried to do and I wound up having to pay a lot of money and the judge in the case ruled in my favor and now I'm trying to get the money back that is owed me. so I guess I was talking to a brick wall many times as well. Patricia .
Comment Written 04-Mar-2024
reply by the author on 04-Mar-2024
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Yes, indeed you know exactly what I am talking about. It is dreadful the way they treat the elderly and the disabled, and feel they "have lived long enough". Many thanks for this kind and supportive review.
Wendy
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You are very welcome. I so much admire your riding skills.
Comment from Brett Matthew West
Creating fundraisers indicated the new CEO in paragraph one at least attempted to improve the facility. More than what most of them do.
Being on-call 24 hours a day can be a demanding challenge.
Caregivers no longer wanted involvement. Happens so frequently in situations like these.
"No one listened." That is the brick wall so often encountered.
"He was not an individual," and "he was a problem," typical of how these Group Homes, overall, view residents.
Does the medical profession truly ever have a patient's "best interests at heart?"
Of course more money from the government was the driving force behind this home's (business, more like it) tube-feeding insistence.
reply by the author on 04-Mar-2024
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Creating fundraisers indicated the new CEO in paragraph one at least attempted to improve the facility. More than what most of them do.
Being on-call 24 hours a day can be a demanding challenge.
Caregivers no longer wanted involvement. Happens so frequently in situations like these.
"No one listened." That is the brick wall so often encountered.
"He was not an individual," and "he was a problem," typical of how these Group Homes, overall, view residents.
Does the medical profession truly ever have a patient's "best interests at heart?"
Of course more money from the government was the driving force behind this home's (business, more like it) tube-feeding insistence.
Comment Written 04-Mar-2024
reply by the author on 04-Mar-2024
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Thanks so much Brett for this perceptive review. Except using J as a fund-raiser to increase government funding was not right. The health team leader would only be called in an emergency .... I appreciate your follloowing this story, and your thoughts.
Wendy
Comment from Julie Lau
Oh my goodness; this sort of thing makes my blood boil, and it happens so often - the invincibility of professionals resting on the laurels of their self-perceived superiority; and their unthinking support of one another while ignoring the advice of those closest to the subject. Thank you for writing this all down. Julie
reply by the author on 04-Mar-2024
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Oh my goodness; this sort of thing makes my blood boil, and it happens so often - the invincibility of professionals resting on the laurels of their self-perceived superiority; and their unthinking support of one another while ignoring the advice of those closest to the subject. Thank you for writing this all down. Julie
Comment Written 04-Mar-2024
reply by the author on 04-Mar-2024
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I'm afraid it happens very frequently, particularly towards the vulnerable - elderly and disabled. Thank you for your very understanding review. I am glad you are following the story.
Wendy
Comment from Jesse James Doty
You covered their strategies and their issues of speedy feeding well with every detail of how you fought for Johnathon and his need to enjoy and taste every bite of his food is well documented in this sad essay. I feel for you, my friend, and know that you are fighting what seems like a losing battle but don't give up! Please for his sake don't give up! Johnathon needs your caring representation in the group home and without it, he might starve or otherwise pass away while in their care. Would you be able to put him elsewhere? I hope for your sake and for his sake you can!
They are not thinking of him but of their pocketbooks instead of his quality of life!
This is not fair!
Jesse
reply by the author on 04-Mar-2024
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You covered their strategies and their issues of speedy feeding well with every detail of how you fought for Johnathon and his need to enjoy and taste every bite of his food is well documented in this sad essay. I feel for you, my friend, and know that you are fighting what seems like a losing battle but don't give up! Please for his sake don't give up! Johnathon needs your caring representation in the group home and without it, he might starve or otherwise pass away while in their care. Would you be able to put him elsewhere? I hope for your sake and for his sake you can!
They are not thinking of him but of their pocketbooks instead of his quality of life!
This is not fair!
Jesse
Comment Written 04-Mar-2024
reply by the author on 04-Mar-2024
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Thank you very much Jesse, for your ongoing encouragement and support, and for the six stars, each one greatly valued. All this happened a few years ago ... and there were no other places available, unfortunately. Thanks again.
Wendy
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I am sorry you are having a difficult time getting the help needed for his quality of life. Your hard work should pay off but it doesn't and that is sad.
Jesse
Comment from T B Botts
Hello Wendy,
Reading this account just leaves me so angry. The powers that be want to go the route of least resistance, grab the money and go forward. It has nothing to do with the well being of the people they are supposed to be caring for. How utterly frustrating to deal with a system that is so corrupt and lacking feeling for the very people they are supposed to be advocating for. Why do these people get involved in work that involves the disabled if they have no heart for them. I'm so sorry that you and Jonathon had to deal with such an incompetent, pathetic, know it all bunch of jackasses. If you weren't there fighting for Jonathon, he would have been shoved off to some corner out of the way and out of mind. Thanks for sharing. One thing, the font was rather small. If you could make it bigger, it would be easier to read. Have a blessed day gal.
Tom
reply by the author on 04-Mar-2024
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Hello Wendy,
Reading this account just leaves me so angry. The powers that be want to go the route of least resistance, grab the money and go forward. It has nothing to do with the well being of the people they are supposed to be caring for. How utterly frustrating to deal with a system that is so corrupt and lacking feeling for the very people they are supposed to be advocating for. Why do these people get involved in work that involves the disabled if they have no heart for them. I'm so sorry that you and Jonathon had to deal with such an incompetent, pathetic, know it all bunch of jackasses. If you weren't there fighting for Jonathon, he would have been shoved off to some corner out of the way and out of mind. Thanks for sharing. One thing, the font was rather small. If you could make it bigger, it would be easier to read. Have a blessed day gal.
Tom
Comment Written 04-Mar-2024
reply by the author on 04-Mar-2024
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Thank you for this lovely review, and all your words express how I felt at the time too. Thank you for the six stars too, such a great encouragement, especially as the next few chapters were quite difficult. But the rating reminds me that it is an important story to tell. Thank you also for the reminder of the font - I usually make it a different font, and bigger, but this time I forgot, so I have now adjusted it. Sorry about that. I always appreciate your thoughtfulness in reviewing.
Wendy
Comment from Debbie D'Arcy
This situation sounds absolutely unbearable and the image of the brick wall says it all! The thing is you see through them and know that it's expedient for them and nothing to do with Jonathan's needs that tube-feeding should be started. Many would be worn down and back away, wrongly assuming they knew best. I can fully appreciate why the emails were saved. And that alone would have driven me to distraction because communication is so important so that you know you're being kept in the loop. You convey this tension and trial in impressive detail, Wendy, and we can understand only too clearly how deeply worrying this stage must have been as the 'specialists' tried to take over. Thanks for sharing. Debbie.
reply by the author on 03-Mar-2024
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This situation sounds absolutely unbearable and the image of the brick wall says it all! The thing is you see through them and know that it's expedient for them and nothing to do with Jonathan's needs that tube-feeding should be started. Many would be worn down and back away, wrongly assuming they knew best. I can fully appreciate why the emails were saved. And that alone would have driven me to distraction because communication is so important so that you know you're being kept in the loop. You convey this tension and trial in impressive detail, Wendy, and we can understand only too clearly how deeply worrying this stage must have been as the 'specialists' tried to take over. Thanks for sharing. Debbie.
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Thank you very much Debbie. I always value your thoughts because you are so astute. It was indeed both worrying and frustrating, all the more because I felt there was a conflict of interest with the Head of the Health Care Team and her doctorate subject, plus increased funding for the service if he was tube-fed.
Wendy
Comment from Verna Cole Mitchell
I am amazed at your tenacity in caring for one you love and understand-for sure, better than the ones wanting just to make it easy on themselves and get more money. I'm sure you were very disillusioned with them. I am.
reply by the author on 03-Mar-2024
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I am amazed at your tenacity in caring for one you love and understand-for sure, better than the ones wanting just to make it easy on themselves and get more money. I'm sure you were very disillusioned with them. I am.
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Yes, very disillusioned. This of course was my first dealings with these organisations, and I expected better. Thank you very much for your caring review.
Wendy