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 kahpot
This must be so frustrating for you, I don't understand why people (even so-called experts) cannot listen to the ones who must know better, especially when they have looked after that person for many years, another wonderful read, and I do hope you can work this out, very well written****kahpot
reply by the author on 03-Mar-2024
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This must be so frustrating for you, I don't understand why people (even so-called experts) cannot listen to the ones who must know better, especially when they have looked after that person for many years, another wonderful read, and I do hope you can work this out, very well written****kahpot
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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It's a matter of pride, I think. They make generalisations and won't accept that there might be someone who can be helped to live a normal life by a different method. Thank you for understanding my frustration, and for reviewing.
Wendy
Comment from barbara.wilkey
I can't believe, although I should, how horrible Jonathan was treated. The people what is easiest for them, not what's best for the child/adult. Thank you for sharing this with us. I know when it's published, it will wake up a lot of people.
reply by the author on 03-Mar-2024
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I can't believe, although I should, how horrible Jonathan was treated. The people what is easiest for them, not what's best for the child/adult. Thank you for sharing this with us. I know when it's published, it will wake up a lot of people.
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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I wonder if anything will change even if people read it, human nature being what it is. The ones involved may be angry that I have exposed them, but they can't do anything to me because their names are not mentioned. Thank you very much for an understanding review. Always grateful.
Wendy
Comment from GWHARGIS
Another gut wrenching installment. There is nothing worse than being part of an agenda. To be told something and even though you feel in your gut this isn't the answer, you are pressured to do it. Hold your ground, Mama Bear. Gretchen
reply by the author on 03-Mar-2024
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Another gut wrenching installment. There is nothing worse than being part of an agenda. To be told something and even though you feel in your gut this isn't the answer, you are pressured to do it. Hold your ground, Mama Bear. Gretchen
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Thank you Gretchen! It is hard when the same pressures drag on through the years. I appreciate thefact that you can see it from my viewpoint and understand, when many would say to just let them win and know he would be safely receiving the nutrition he needs. I appreciate your insightful review, along with the encouragement of six stars.
Wendy
Comment from Mrs. KT
Good morning, Wendy!
Good Lord!
How you managed to stay calm and persevere and advocate for your beloved Jonathan is so incredibly frustrating to read. I'm afraid that "
"Those in Charge" would have experienced my wrath in no uncertain terms, and yet, I fully understand why you had to "tread lightly."
Just gut-wrenching to read... for all concerned.
I remember doing battle with my mother's team of carers when she was hospitalized with sepsis while suffering from Parkinson's disease and dementia. And, they did, indeed, experience my wrath... And, yes, her needs were addressed, but I was left emotionally and spiritually drained.
Thank you for sharing!
Fondly,
diane
reply by the author on 03-Mar-2024
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Good morning, Wendy!
Good Lord!
How you managed to stay calm and persevere and advocate for your beloved Jonathan is so incredibly frustrating to read. I'm afraid that "
"Those in Charge" would have experienced my wrath in no uncertain terms, and yet, I fully understand why you had to "tread lightly."
Just gut-wrenching to read... for all concerned.
I remember doing battle with my mother's team of carers when she was hospitalized with sepsis while suffering from Parkinson's disease and dementia. And, they did, indeed, experience my wrath... And, yes, her needs were addressed, but I was left emotionally and spiritually drained.
Thank you for sharing!
Fondly,
diane
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Yes, it is very draining, and particularly when it drags on through the years. It is really hard to stand up against a whole system which seems determined to put everyone in the same box because that is easiest and most efficient. Thank you for your understanding, and for your insightful words, and also for the very encouraging six stars. They mean a lot to me.
Wendy
Comment from Begin Again
My heart breaks when I read your struggles and what the "experts" wanted for Jonathan. I guess I was lucky to be able to remove John from the system. Of course, his disabilities were no where in comparison to Jonathan. I wonder do these people have hearts and common sense before they go into the field, or do they just lose those qualities over time.
Hugs, Carol
reply by the author on 03-Mar-2024
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My heart breaks when I read your struggles and what the "experts" wanted for Jonathan. I guess I was lucky to be able to remove John from the system. Of course, his disabilities were no where in comparison to Jonathan. I wonder do these people have hearts and common sense before they go into the field, or do they just lose those qualities over time.
Hugs, Carol
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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I am glad that your John went back home to your love and care, even though that must have made life difficult for you. The sad thing is that these experts lose sight of their individual needs, and apply general principles to a specific person who may not be inside the box as they wish everyone to be. Thank you for reviewing with such understanding.
Wendy
Comment from Katherine M. (k-11)
This is an extremely detailed account of one aspect of Jonathan's care that did not remain what was best for him in the group home. I find it extremely sad that his favourite activity was put in doubt. When Daddy was ill we had exactly the same situation, except that the care team were all on the same page and no-one minded that helping him to eat his favourite foods right up to the end was a full-time job. We were very lucky. kay
reply by the author on 03-Mar-2024
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This is an extremely detailed account of one aspect of Jonathan's care that did not remain what was best for him in the group home. I find it extremely sad that his favourite activity was put in doubt. When Daddy was ill we had exactly the same situation, except that the care team were all on the same page and no-one minded that helping him to eat his favourite foods right up to the end was a full-time job. We were very lucky. kay
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Thank you, Kay, for sharing and I am so glad for your father's sake that they put him and his needs first, regardless of time pressures. I appreciate your caring review.
Wendy
Comment from Paul McFarland
This is turning into a very sad story, Wendy. I can't imagine the conflict that is going on in your mind. The health care industry for the disabled is sadly lacking through out many, if not all, countries. It is a rare individual who can work in those facilities and give the proper care.
reply by the author on 03-Mar-2024
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This is turning into a very sad story, Wendy. I can't imagine the conflict that is going on in your mind. The health care industry for the disabled is sadly lacking through out many, if not all, countries. It is a rare individual who can work in those facilities and give the proper care.
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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You are right. It seems to be universal that the vulnerable are taken advantage of, and become easy victims. Thank you for reviewing, Paul. I appreciate it.
Wendy
Comment from BethShelby
This is really sad in so many ways. This person who can't speak for himself and you who job as foster mother is over, is at the mercy of system which is more interested in convenience and more government money than in making life more barable for someone with severe disabilities. I hope your book become reguired reading for those that work in this profession.
reply by the author on 03-Mar-2024
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This is really sad in so many ways. This person who can't speak for himself and you who job as foster mother is over, is at the mercy of system which is more interested in convenience and more government money than in making life more barable for someone with severe disabilities. I hope your book become reguired reading for those that work in this profession.
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Thank you very much Beth, for your very insightful review. I doubt it will be widely read. If the people involved in his life read it, they will doubtless be angry that I have exposed them. And the fostering agencies likewise. And any who foster disabled children will be in despair by the end, although there are some good parts. But I still feel that all these things need to be revealed, even for just a few readers, and also for my family. Thank you so much for your encouragement.
Wendy
Comment from Wayne Fowler
Pitiful performance on the part of 'business-minded' professionals. It's enough to boil your blood! When all it requires is to spend a few dollars extra in labor to provide help in longer feeding time. Or better yet, offer incentives for volunteers to help in feeding people.
What happened to your "I Am Confused" post? (just curious)
Best wishes.
reply by the author on 03-Mar-2024
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Pitiful performance on the part of 'business-minded' professionals. It's enough to boil your blood! When all it requires is to spend a few dollars extra in labor to provide help in longer feeding time. Or better yet, offer incentives for volunteers to help in feeding people.
What happened to your "I Am Confused" post? (just curious)
Best wishes.
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Thank you very much. A caring and insightful review. They didn't even need to pay for extra time, just needed to organise their time better really (less chatting etc.) I withdrew the other post because the first reviewer gave me the answer I needed (I had asked for clarification about what other writers did, to solve the problem).
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Ahhhhh
Comment from royowen
You shouldn't really be surprised, really their institutional attitude is basically that they are the experts, and you should bow to their expertise. But of course your care was simply that treated Jonathan as a duty but not of care, well done, blessings Roy
reply by the author on 03-Mar-2024
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You shouldn't really be surprised, really their institutional attitude is basically that they are the experts, and you should bow to their expertise. But of course your care was simply that treated Jonathan as a duty but not of care, well done, blessings Roy
Comment Written 03-Mar-2024
reply by the author on 03-Mar-2024
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Thank you Roy for reviewing. Yes, looking back it is clear that that was so.
Wendy
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The world over I'm afraid.