homely60
New member
- Joined
- Jun 16, 2013
- Messages
- 3
- Reason
- Friend was DX
- Diagnosis
- 05/2013
- Country
- UK
- State
- Wiltshire
- City
- Bath
Hi
I hope you can help me in some way, one of my longest and closest friends has just been diagnosed with Motor Neuron Disease (June 5th), she has only just turned 40. So as you can imagine this is a very stressful time for everyone. She lives with her fiancee and have two children, a boy who is 13 (from my Friends previous relationship) and they have a 2 year old daughter together. My friend only lost her dad 15 months ago, then her mum this February who she was extremely close too, and her son too was very close to his gran. Her partner is hoping to give up work to care for her, he is currently off work on compassionate leave. Apart from all the emotional distress we are obviously trying to sort so many other things out for them, benefits, ordering equipment etc. The council have been out a couple of times with their team of people to discuss the alterations (DFG) etc. Basically what they have proposed is that she will need a through floor lift, the main problem we have with this is space upstairs. My friend and her partner have stressed from day 1 that the whole family remain on the same level, all having their bedrooms upstairs, so everyone is in easy access of each other etc. This needs to be done as this is important to my friends mental health to continue to feel involved of the parenting of her two children, this will keep her confidence and moral up as even her consultant said that its so important to have a positive mental approach with this illness. If they are not kept all at the same level this would devastate my friend and could be detrimental to her physical health.
So in a nutshell basically this Friday June 21st we have the meeting with the DFG team, OT, financial officer etc etc to hopefully come to an agreement to how this is going to work. In the last meeting they proposed firstly that the 2 year daughter loose her bedroom and she shares with her 13 year old brother! As if that could ever work, and its just morally wrong. we made it quite clear that would never happen. So they then suggested that the 13 year old son loose his room and he moves downstairs into the dining room. Although we stressed we didn't want this for many reasons, we know on Friday they will come back with the plans with this idea. So what I'm asking for really is any help you could offer in how we can fight against this from happening. It is there own house so i know they can have more say in what goes on.
We feel that if the son is pushed downstairs this could effect him badly, its like hes being pushed out, the son is at a tender age and has just lost his grandparents and is watching this horrific illness destroy his mum, that's a lot to deal with for a 13 year old boy, surely he would feel quite alone, scared, anxious and pushed out. It would be hard to monitor how much time he plays on his xbox, which is something he has seemed to thrown himself into, like a coping strategy, hes not a great talker at the best of times and has gone very quiet. They haven't told him yet that his mum has MND they have just told him that mum is very unwell, and shes going to get worse, be in a wheelchair (which to be fair probably needs to be in one now) and that shes not going to live as long as they would like her to. This was last Sunday they told him this and he hasn't asked any questions at all about it. So we are also very concerned hes not coping that well with it. we are going to seek some professional help for him, although im not to sure how he will take to this. I think by moving him downstairs would be detrimental to his and the whole family's welfare. But its the proving it and providing enough evidence to support us. So is there any advice you could give us, do you know of any physiological effects this could have on a 13 year old boy, we are going to read through a number of acts, eg humans right act etc to see if we can find anything in these which would back us up.
Is there any legal rights as a disabled parent to keep their children on the same level as the rest of the family?
Please anything would be of help right now and we are obviously on quite a tight time scale so any help or advice would be appreciated as soon as you can.
Our plans that we have discussed is that they build out on the upper level, basically push the bathroom out (in the new build bit) then this would create more space on the landing for the lift, turning space etc for the wheelchair. We are getting a builder out to have a look and to see if this can be done, as the lower level is already pushed out if you see what i mean so was hoping they can just build straight on top. This then would give all the space needed and everyone to be kept together as a family unit.We will be showing the team our ideas this Friday, but we know they will push for their idea because end of the day that's going to be the cheaper option. SORRY THIS IS SO LONG
I hope you can help me in some way, one of my longest and closest friends has just been diagnosed with Motor Neuron Disease (June 5th), she has only just turned 40. So as you can imagine this is a very stressful time for everyone. She lives with her fiancee and have two children, a boy who is 13 (from my Friends previous relationship) and they have a 2 year old daughter together. My friend only lost her dad 15 months ago, then her mum this February who she was extremely close too, and her son too was very close to his gran. Her partner is hoping to give up work to care for her, he is currently off work on compassionate leave. Apart from all the emotional distress we are obviously trying to sort so many other things out for them, benefits, ordering equipment etc. The council have been out a couple of times with their team of people to discuss the alterations (DFG) etc. Basically what they have proposed is that she will need a through floor lift, the main problem we have with this is space upstairs. My friend and her partner have stressed from day 1 that the whole family remain on the same level, all having their bedrooms upstairs, so everyone is in easy access of each other etc. This needs to be done as this is important to my friends mental health to continue to feel involved of the parenting of her two children, this will keep her confidence and moral up as even her consultant said that its so important to have a positive mental approach with this illness. If they are not kept all at the same level this would devastate my friend and could be detrimental to her physical health.
So in a nutshell basically this Friday June 21st we have the meeting with the DFG team, OT, financial officer etc etc to hopefully come to an agreement to how this is going to work. In the last meeting they proposed firstly that the 2 year daughter loose her bedroom and she shares with her 13 year old brother! As if that could ever work, and its just morally wrong. we made it quite clear that would never happen. So they then suggested that the 13 year old son loose his room and he moves downstairs into the dining room. Although we stressed we didn't want this for many reasons, we know on Friday they will come back with the plans with this idea. So what I'm asking for really is any help you could offer in how we can fight against this from happening. It is there own house so i know they can have more say in what goes on.
We feel that if the son is pushed downstairs this could effect him badly, its like hes being pushed out, the son is at a tender age and has just lost his grandparents and is watching this horrific illness destroy his mum, that's a lot to deal with for a 13 year old boy, surely he would feel quite alone, scared, anxious and pushed out. It would be hard to monitor how much time he plays on his xbox, which is something he has seemed to thrown himself into, like a coping strategy, hes not a great talker at the best of times and has gone very quiet. They haven't told him yet that his mum has MND they have just told him that mum is very unwell, and shes going to get worse, be in a wheelchair (which to be fair probably needs to be in one now) and that shes not going to live as long as they would like her to. This was last Sunday they told him this and he hasn't asked any questions at all about it. So we are also very concerned hes not coping that well with it. we are going to seek some professional help for him, although im not to sure how he will take to this. I think by moving him downstairs would be detrimental to his and the whole family's welfare. But its the proving it and providing enough evidence to support us. So is there any advice you could give us, do you know of any physiological effects this could have on a 13 year old boy, we are going to read through a number of acts, eg humans right act etc to see if we can find anything in these which would back us up.
Is there any legal rights as a disabled parent to keep their children on the same level as the rest of the family?
Please anything would be of help right now and we are obviously on quite a tight time scale so any help or advice would be appreciated as soon as you can.
Our plans that we have discussed is that they build out on the upper level, basically push the bathroom out (in the new build bit) then this would create more space on the landing for the lift, turning space etc for the wheelchair. We are getting a builder out to have a look and to see if this can be done, as the lower level is already pushed out if you see what i mean so was hoping they can just build straight on top. This then would give all the space needed and everyone to be kept together as a family unit.We will be showing the team our ideas this Friday, but we know they will push for their idea because end of the day that's going to be the cheaper option. SORRY THIS IS SO LONG