I am NOT my disability...
I was in hospital recently and I am not well :*-( *sobs*
This makes it much harder to cope with defensive and slight ignorant people who are supposed to help you!
I was tired and hurting and they were stressing me out no end repeating things we have already heard/read and already suffered through.
My disability is not me!
I am not being selfish by discussing it after all it is the defined problem that has everything to do with whether or not our child is to return home and perhaps I wouldn't need to talk about it if someone/anyone had asked me about it instead of just judging it/me.
Have they not discovered that assumptions are not facts and only lead to incorrect decisions due to being based on incorrect informatio.
Perhaps instead of jumping ahead why not put in writing in detail the issues and stick to them and not state more issues, once issues are resolved!
Perhaps also have a meeting with adult services and give them issues in writing so I can have needs assessment again, and parent our child with the eligible services I'm entitled to as a disabled mother.
Then all is solved and our child is home. But no, instead, keep adult serv's out of loop and penalise me for having a disability and not being able to be able bodied, but also being prevented from services that would resolve any issues presented.
Waste of court's time and money if it goes thus far.
*prays for issues written down and stuck to, and prays for meeting and needs assessment again*
Previous assessment included support from my parents, however child services does no longer allow (after needs assessment was competed, this choice was expressed, out of the blue) ...child services does no longer allow my parents as part of our support network, hence disagreement with needs assessment, yet keep changing issues whenever we resolve them.
I was told to my face early on, we'd never get our child home, it seems they are going to great lengths to prevent this! Why not just allow us the support we are entitled to by law and send our poor child, whom has leukemia, has had for a year now... send our child home where our child needs to be, and don't ever tell us my parents can't have our child a weekend now and then, they're the childs grandparents after all, and they reside very close by.
I hope this surreal and traumatic experience draws to a close soon, as I am a strong woman and I know my child needs me, or else I would be feeling as if I am not allowed to be disabled and the only way to get rid of a disability is to get rid of the person. Child services should not be allowing this to be the only option, as I am very concerned for the mental health and wellbeing of other disabled mother's who may be in this situation, again due to the lack of knowledge that child services have of disabilities. Hence they should be working close to adult services who have training and specialise in supporting disabled parent(s), otherwise we could well have disabled mothers committing suicide as the only option to have their child(ren) return home, in my case to their able bodied father.
We both have successfully cared for our child with the steroids etc, for at least two months prior to acting on wrong advice given to us by a member of oncology staff. Due to this, they admitted their fault and stated that the hospital assumes parents are aware of children with leukemia, and that they are not permitted suppositories. We administered one infant/ baby suppository and it lasted all of three seconds, we followed all of the information that was supplied to us at the time and we faced a very intense and detailed police investigation in which no further action is required.
There are lots of false claims written by the ex social worker that people are not correcting and are taking as gospel. In which we have no chance of having a fair and accurate investigation due to these issues. And some breaches of confidentiality.
We are being therefore penalised for something we were told our child was allowed, we were told our child "was allowed laxatives" and to expect this need as a result of his chemotherapy. We only had the info we were given to go off because we were told not to Google. I advise anyone in this situation to Google because hospitals never admit their neglect. All over the issue of money and reputation, I believe. Frankly, I won't sue no matter what, as all we want is a normal life full of our child's presence and every second our child is awake we will tend solely to the needs, as before, as our child is our life. This child is our miracle and we may never have any other children, and we are missing important milestones in our child's life.
I feel as if a part of my soul has been stolen and in all honesty when my husband and I are at home it is so silent and empty, it as if and I hate to say this but it is true, it is as if our child is no longer alive. I sometimes find myself in the child's bed, sobbing into the cuddlies and I even sleep with one of the child's favourite elephant comforter he names twinkle as Mr elephant has stars on his ears.
Please let there be a God, and please let him hear our prayers and my cries.
- from a mother, reaching out for the truth to come out and our life returned from us, we will never be able to replace the lost milestones but we can create new memories and witness other milestones.
For my child, know that we love you so very much and I would do anything for you, and I wish I could trade places with you so very much. And I wish we were allowed to take you to hospital using disabled hospital transport so I could come to your hospital appointments most of the time, I'm so sorry child services will not allow this. Perhaps in the future if *hopefully when* you come home.
From my heart to yours, I feel your pain every second and I promise you I will spend the rest of my life fighting for you if that's what's needed. Because YOU ARE my life, and your daddy's too.
This makes it much harder to cope with defensive and slight ignorant people who are supposed to help you!
I was tired and hurting and they were stressing me out no end repeating things we have already heard/read and already suffered through.
My disability is not me!
I am not being selfish by discussing it after all it is the defined problem that has everything to do with whether or not our child is to return home and perhaps I wouldn't need to talk about it if someone/anyone had asked me about it instead of just judging it/me.
Have they not discovered that assumptions are not facts and only lead to incorrect decisions due to being based on incorrect informatio.
Perhaps instead of jumping ahead why not put in writing in detail the issues and stick to them and not state more issues, once issues are resolved!
Perhaps also have a meeting with adult services and give them issues in writing so I can have needs assessment again, and parent our child with the eligible services I'm entitled to as a disabled mother.
Then all is solved and our child is home. But no, instead, keep adult serv's out of loop and penalise me for having a disability and not being able to be able bodied, but also being prevented from services that would resolve any issues presented.
Waste of court's time and money if it goes thus far.
*prays for issues written down and stuck to, and prays for meeting and needs assessment again*
Previous assessment included support from my parents, however child services does no longer allow (after needs assessment was competed, this choice was expressed, out of the blue) ...child services does no longer allow my parents as part of our support network, hence disagreement with needs assessment, yet keep changing issues whenever we resolve them.
I was told to my face early on, we'd never get our child home, it seems they are going to great lengths to prevent this! Why not just allow us the support we are entitled to by law and send our poor child, whom has leukemia, has had for a year now... send our child home where our child needs to be, and don't ever tell us my parents can't have our child a weekend now and then, they're the childs grandparents after all, and they reside very close by.
I hope this surreal and traumatic experience draws to a close soon, as I am a strong woman and I know my child needs me, or else I would be feeling as if I am not allowed to be disabled and the only way to get rid of a disability is to get rid of the person. Child services should not be allowing this to be the only option, as I am very concerned for the mental health and wellbeing of other disabled mother's who may be in this situation, again due to the lack of knowledge that child services have of disabilities. Hence they should be working close to adult services who have training and specialise in supporting disabled parent(s), otherwise we could well have disabled mothers committing suicide as the only option to have their child(ren) return home, in my case to their able bodied father.
We both have successfully cared for our child with the steroids etc, for at least two months prior to acting on wrong advice given to us by a member of oncology staff. Due to this, they admitted their fault and stated that the hospital assumes parents are aware of children with leukemia, and that they are not permitted suppositories. We administered one infant/ baby suppository and it lasted all of three seconds, we followed all of the information that was supplied to us at the time and we faced a very intense and detailed police investigation in which no further action is required.
There are lots of false claims written by the ex social worker that people are not correcting and are taking as gospel. In which we have no chance of having a fair and accurate investigation due to these issues. And some breaches of confidentiality.
We are being therefore penalised for something we were told our child was allowed, we were told our child "was allowed laxatives" and to expect this need as a result of his chemotherapy. We only had the info we were given to go off because we were told not to Google. I advise anyone in this situation to Google because hospitals never admit their neglect. All over the issue of money and reputation, I believe. Frankly, I won't sue no matter what, as all we want is a normal life full of our child's presence and every second our child is awake we will tend solely to the needs, as before, as our child is our life. This child is our miracle and we may never have any other children, and we are missing important milestones in our child's life.
I feel as if a part of my soul has been stolen and in all honesty when my husband and I are at home it is so silent and empty, it as if and I hate to say this but it is true, it is as if our child is no longer alive. I sometimes find myself in the child's bed, sobbing into the cuddlies and I even sleep with one of the child's favourite elephant comforter he names twinkle as Mr elephant has stars on his ears.
Please let there be a God, and please let him hear our prayers and my cries.
- from a mother, reaching out for the truth to come out and our life returned from us, we will never be able to replace the lost milestones but we can create new memories and witness other milestones.
For my child, know that we love you so very much and I would do anything for you, and I wish I could trade places with you so very much. And I wish we were allowed to take you to hospital using disabled hospital transport so I could come to your hospital appointments most of the time, I'm so sorry child services will not allow this. Perhaps in the future if *hopefully when* you come home.
From my heart to yours, I feel your pain every second and I promise you I will spend the rest of my life fighting for you if that's what's needed. Because YOU ARE my life, and your daddy's too.
