Is what most people are and I enjoy choosing not to be.
I am feeing better, illness still in e background, aches and pains but OK.
The other day both Deej and me slipped on e mud outside Robin’s. that was one of those really funny moments that happen to other people.
Andy now officially lives here
Once again I have more people than I have car space!
Is what most people are and I enjoy choosing not to be.
I am feeing better, illness still in e background, aches and pains but OK.
The other day both Deej and me slipped on e mud outside Robin’s. that was one of those really funny moments that happen to other people.
Andy now officially lives here
Once again I have more people than I have car space!
I am on this course at the moment, indeed, it was the one I was also booked in for yesterday and which caused all the fuss from yesterday as well and is organised by ‘Parents in Partnership’.
The premise is that together, families of the disabled can bring about change both for themselves and for future generations. It is certainly a good way of thinking and will, I am certain, help achieve the aim.
Annoyingly, borderline, frustratingly, there is where my positive viewpoint ends.
My notes of the day are in the car so I am bound to leave something out here in my summary but I shall have made my point.
Everything thus far has focused on the ‘family’. Rarely has the word ‘Carer’ been used at all and I have read ahead to the further few sessions which are scheduled. The thrust seems to be for the ‘family’ to be the facilitators to bring about change for their disabled family member, to learn how to manipulate the system and ensure the full entitlement under law is achieved. I’d agree with that except that, the ‘family’ are not a machine. They are living, breathing and feeling individuals who also have complex needs of their own and often have other children to care for.
When we refer to the ‘Carer’ as simply ‘the family’ we then belittle the considerable work they do. We change it from the exceptional requirement to care that is the Carer and lower it to the expected task of the parent. It is precisely this label which has caused so many disabled people to enter the care system when their family is no longer able to cope. It is because it is expected that a parent would care exclusively that there is a diminished need to provide resources for that caring role.
So, by this omission, the course is failing.
Being inclusive and non discriminatory. That is the aim of the course as well. Despite that, I found it extremely difficult to hear today. The hall has terrible acoustics. It is not too dissimilar to a swimming pool in that respect. I sat at the front to assist what I perceived as a possible difficulty and I was able to hear most of what the speakers said. However, during interactive sessions with others there in small groups I found hearing all but impossible. This was then not helped by one of the facilitators turning on some background music. I asked that she turn it off again because it was adversely affecting my ability to hear with hearing aids and she then started talking very slowly and clearly with exaggerated mouth movements and this made me feel as though I had just informed her I didn’t quite speak English well or was perhaps a little under achieved.
As it happens, hearing or otherwise in these small group situations proved pointless. One woman was from MENCAP and was so clearly used to being in charge as a professional expert mother of a disabled person who works with disabled people. Another woman was most vocal and demanding even though she seemed to have little understanding of how the system works and, indeed, her experience of caring was for someone with only mild difficulties about which she was clearly very bitter over her experiences with social services. The other lady was well educated and more mature but, like me, unimportant in the agenda of the other two. This fact was borne out in that our group was always the last finished and with the least thought out argument. What sicked me all the more was that long after we were asked to stop, those two continued alone to create their agenda. Speaking of being asked to stop, on one occasion one of the speakers/organisors came up behind us and said “Right now ladies, very nearly time to stop”.
Of those tasks we were asked as small groups to provide both were pointless and dommed to failure. One, for example, was to design and draw a poster for a new group, to name it, to say whether it needed funding or not, what the funding would be spent on, whether it would require a committee, where it would serve etc … for this we were allotted 20 minutes.
The setting up of a group is an admirable objective in its own right but 20 minutes and to do so in order, I presumed, to see if anyone understood the complexities, was rather pointless and did not really fall within the objectives of the course.
As with these training courses, there is a book of interesting tasks which can be included to demonstrate an understanding. The one chosen today was where each participant, in this case, the entire amount of those present, was given an apparently random new identity which they then had to share with the room. The participant themselves were first asked and then the group to identify their position as perceived by society and respresented by their position up or down the room. It is a good exercise except when, as in this case, those there are clearly already aware, because of their caring roles, of the prejudice which exists. Something which compounded my dislike for this particular task was that we were asked not to read what our identity was until just before we shared it with the group. I could understand that but clearly they had overlooked a very important point, what if one of those identities was wholly inappropriate for the individual? In my case I discovered my own identity to be ‘Local councillor who is openly gay’. I felt very awkward having to stand up and be judged on my sexuality as happened. The ethos of being inclusive and non judgemental went out of the window at that time.
There were other examples of why I feel this session is not working but they are somewhat similar and I am aware just how long this is becoming.
I shall give another session a try next month but am not hopeful things shall improve.
I am on this course at the moment, indeed, it was the one I was also booked in for yesterday and which caused all the fuss from yesterday as well and is organised by ‘Parents in Partnership’.
The premise is that together, families of the disabled can bring about change both for themselves and for future generations. It is certainly a good way of thinking and will, I am certain, help achieve the aim.
Annoyingly, borderline, frustratingly, there is where my positive viewpoint ends.
My notes of the day are in the car so I am bound to leave something out here in my summary but I shall have made my point.
Everything thus far has focused on the ‘family’. Rarely has the word ‘Carer’ been used at all and I have read ahead to the further few sessions which are scheduled. The thrust seems to be for the ‘family’ to be the facilitators to bring about change for their disabled family member, to learn how to manipulate the system and ensure the full entitlement under law is achieved. I’d agree with that except that, the ‘family’ are not a machine. They are living, breathing and feeling individuals who also have complex needs of their own and often have other children to care for.
When we refer to the ‘Carer’ as simply ‘the family’ we then belittle the considerable work they do. We change it from the exceptional requirement to care that is the Carer and lower it to the expected task of the parent. It is precisely this label which has caused so many disabled people to enter the care system when their family is no longer able to cope. It is because it is expected that a parent would care exclusively that there is a diminished need to provide resources for that caring role.
So, by this omission, the course is failing.
Being inclusive and non discriminatory. That is the aim of the course as well. Despite that, I found it extremely difficult to hear today. The hall has terrible acoustics. It is not too dissimilar to a swimming pool in that respect. I sat at the front to assist what I perceived as a possible difficulty and I was able to hear most of what the speakers said. However, during interactive sessions with others there in small groups I found hearing all but impossible. This was then not helped by one of the facilitators turning on some background music. I asked that she turn it off again because it was adversely affecting my ability to hear with hearing aids and she then started talking very slowly and clearly with exaggerated mouth movements and this made me feel as though I had just informed her I didn’t quite speak English well or was perhaps a little under achieved.
As it happens, hearing or otherwise in these small group situations proved pointless. One woman was from MENCAP and was so clearly used to being in charge as a professional expert mother of a disabled person who works with disabled people. Another woman was most vocal and demanding even though she seemed to have little understanding of how the system works and, indeed, her experience of caring was for someone with only mild difficulties about which she was clearly very bitter over her experiences with social services. The other lady was well educated and more mature but, like me, unimportant in the agenda of the other two. This fact was borne out in that our group was always the last finished and with the least thought out argument. What sicked me all the more was that long after we were asked to stop, those two continued alone to create their agenda. Speaking of being asked to stop, on one occasion one of the speakers/organisors came up behind us and said “Right now ladies, very nearly time to stop”.
Of those tasks we were asked as small groups to provide both were pointless and dommed to failure. One, for example, was to design and draw a poster for a new group, to name it, to say whether it needed funding or not, what the funding would be spent on, whether it would require a committee, where it would serve etc … for this we were allotted 20 minutes.
The setting up of a group is an admirable objective in its own right but 20 minutes and to do so in order, I presumed, to see if anyone understood the complexities, was rather pointless and did not really fall within the objectives of the course.
As with these training courses, there is a book of interesting tasks which can be included to demonstrate an understanding. The one chosen today was where each participant, in this case, the entire amount of those present, was given an apparently random new identity which they then had to share with the room. The participant themselves were first asked and then the group to identify their position as perceived by society and respresented by their position up or down the room. It is a good exercise except when, as in this case, those there are clearly already aware, because of their caring roles, of the prejudice which exists. Something which compounded my dislike for this particular task was that we were asked not to read what our identity was until just before we shared it with the group. I could understand that but clearly they had overlooked a very important point, what if one of those identities was wholly inappropriate for the individual? In my case I discovered my own identity to be ‘Local councillor who is openly gay’. I felt very awkward having to stand up and be judged on my sexuality as happened. The ethos of being inclusive and non judgemental went out of the window at that time.
There were other examples of why I feel this session is not working but they are somewhat similar and I am aware just how long this is becoming.
I shall give another session a try next month but am not hopeful things shall improve.
It is strange how things work out, how one things leads to another and before we know it, we have a missing person report, people doing a search of the town, anxiety, panic and general confusion all whilst I was sitting oblivious.
I made a mistake, I had this week arranged two training courses, the first was today and the other was a two day course starting (I thought) on Wednesday.
Last week I mentioned to James where the course would be today, it was really only in St James around 1 1/2 miles from here.
Thing is, the two day course actually started today and so they called home to ask where I was because they were expecting me. This set Deej off into a panic because clearly I never arrived where I was meant to this morning. People were called, Matt and Anne were brought around here, Daisy was dragged out of school and peeps were looking for me. My phone was getting 57 missed called and half a dozen voicemail messages and a few texts. This whilst I was busy on my course with the phone on silent.
James went to where the course was, maybe with Matt, I am not entirely sure. They could not see the car in the car park so ‘obviously’ I wasn’t there … the car had to be parked two streets away as there was no room. They didn’t think to go inside and ask.
The police were called and concerned asked at 15:45 what time I was due home and were told 16:00!
The hospital were called (twice) as clearly by now I must be dead and, indeed, a Steve Williams had been checked in today to the emergency department and off they went to check on the details … turned out he was 50+ and from Gloucester.
It was some time after 4pm I discovered the story of my demise. Indeed, such a shock was it to me I felt really guilty for not so much as having a broken limb, maybe even a nasty scratch would have been better but just having a cold hardly seemed to qualify all the attention my disappearance had created.
Still, it is good to know how keenly my family readjust to changing situations an upon my arrival no one made me a tea, I guess they figured that if I was not going to die when I was supposed to then I forfeit my right to a drink. In all the commotion of the day, no one had given any consideration to dinner either so I had to drive to the chip shop to provide food for everyone. Just before that my aching corpse had to attempt a resolution in a dispute between Zoey and James whereby Zoey had denied a bad wrong doing which she later confessed to. Then Andy turned up so I entertained him until I drove home Matt and Anne. Then I was back to entertaining Andy again and, in the meantime, trying to sort out James PC. Just half an hour ago I drove Andy home but, before that I had to get James out of Daisy’s room because he’d fallen asleep in there. I also had to make his bed for him. I have been doing the dishwasher, backed up the PC’s and cleared up some rubbish after some lazy sods.
Now that Tuesday is gone and I am into Wednesday, I have to admit to being somewhat shattered. But, finally, I have some time to myself … probably (but don’t count on it)
Oh, for the record, rumours of my death had been greatly exaggerated.
It is strange how things work out, how one things leads to another and before we know it, we have a missing person report, people doing a search of the town, anxiety, panic and general confusion all whilst I was sitting oblivious.
I made a mistake, I had this week arranged two training courses, the first was today and the other was a two day course starting (I thought) on Wednesday.
Last week I mentioned to James where the course would be today, it was really only in St James around 1 1/2 miles from here.
Thing is, the two day course actually started today and so they called home to ask where I was because they were expecting me. This set Deej off into a panic because clearly I never arrived where I was meant to this morning. People were called, Matt and Anne were brought around here, Daisy was dragged out of school and peeps were looking for me. My phone was getting 57 missed called and half a dozen voicemail messages and a few texts. This whilst I was busy on my course with the phone on silent.
James went to where the course was, maybe with Matt, I am not entirely sure. They could not see the car in the car park so ‘obviously’ I wasn’t there … the car had to be parked two streets away as there was no room. They didn’t think to go inside and ask.
The police were called and concerned asked at 15:45 what time I was due home and were told 16:00!
The hospital were called (twice) as clearly by now I must be dead and, indeed, a Steve Williams had been checked in today to the emergency department and off they went to check on the details … turned out he was 50+ and from Gloucester.
It was some time after 4pm I discovered the story of my demise. Indeed, such a shock was it to me I felt really guilty for not so much as having a broken limb, maybe even a nasty scratch would have been better but just having a cold hardly seemed to qualify all the attention my disappearance had created.
Still, it is good to know how keenly my family readjust to changing situations an upon my arrival no one made me a tea, I guess they figured that if I was not going to die when I was supposed to then I forfeit my right to a drink. In all the commotion of the day, no one had given any consideration to dinner either so I had to drive to the chip shop to provide food for everyone. Just before that my aching corpse had to attempt a resolution in a dispute between Zoey and James whereby Zoey had denied a bad wrong doing which she later confessed to. Then Andy turned up so I entertained him until I drove home Matt and Anne. Then I was back to entertaining Andy again and, in the meantime, trying to sort out James PC. Just half an hour ago I drove Andy home but, before that I had to get James out of Daisy’s room because he’d fallen asleep in there. I also had to make his bed for him. I have been doing the dishwasher, backed up the PC’s and cleared up some rubbish after some lazy sods.
Now that Tuesday is gone and I am into Wednesday, I have to admit to being somewhat shattered. But, finally, I have some time to myself … probably (but don’t count on it)
Oh, for the record, rumours of my death had been greatly exaggerated.
I got myself a cold which is annoying. I am not ill, just a little snotty, shivery and sore and all of those I can live with for a few days! I have been ill before now, I know what influenza is and this isn’t, end of.
Have been trying to plan a holiday this week. Decided against risking a foreign holiday seeing as we have no legal right to take James out of the country and are relying on the good will of his parents, it actually just isn’t worth the risk that they may suddenly refuse. We then opted for a UK holiday on a broads boat using the holiday vouchers we are entitled to thanks to use shopping at Tesco. All was going well until the company said how much deposit they wanted, right now, on a debit card … £700! As I said to them, this is a recession and larger holiday companies than their’s have gone tits up, why would I want to risk £700? They have not replied as yet.
Another familiar face from Star Trek universe died recently, these things happen. A sign we are all getting that little bit older.
We lost the DLA appeal for Jermaine last week. We knew we would from the moment we walked in. I don’t agree with their reasoning but, at the same time, I cannot see us defeating it either. An appeal would be a very long winded affair with little chance of getting a reversal on the matter. Still, nothing lost except time.
Have been working on the final touches to the charity website. It is still in testing phase right now. I am also restricted by where it is hosted so cannot add some of the features I want to add which is frustrating! Just heard of another Northampton charity who have obtained a 4 figure grant for a site which, by all accounts, is not going to be a whole lot different. I just so hope my investment in to my CV pays off as I could end up rather bitter about all the work I do if I get no reward ultimately.
Pete is another year older and a special year this year too. Many happy other ones, love you Pete xxx
James now has a BMX and no doubt I shall shite bricks each time he goes out on it. All I have so far managed to achieve by way of a concession is that he puts brakes on it!
Next week is going to be busy for me as I have three training days Tues thru Thurs and then a meeting in Corby on Friday. I amongst those I also have at least one, possible two other evening meetings as well so I think I may just be right knackered by the end of the week.
I have just managed to write this with only 4 sneezes which, and you don’t need to know this, needed some considerable cleaning up … ewww.
I got myself a cold which is annoying. I am not ill, just a little snotty, shivery and sore and all of those I can live with for a few days! I have been ill before now, I know what influenza is and this isn’t, end of.
Have been trying to plan a holiday this week. Decided against risking a foreign holiday seeing as we have no legal right to take James out of the country and are relying on the good will of his parents, it actually just isn’t worth the risk that they may suddenly refuse. We then opted for a UK holiday on a broads boat using the holiday vouchers we are entitled to thanks to use shopping at Tesco. All was going well until the company said how much deposit they wanted, right now, on a debit card … £700! As I said to them, this is a recession and larger holiday companies than their’s have gone tits up, why would I want to risk £700? They have not replied as yet.
Another familiar face from Star Trek universe died recently, these things happen. A sign we are all getting that little bit older.
We lost the DLA appeal for Jermaine last week. We knew we would from the moment we walked in. I don’t agree with their reasoning but, at the same time, I cannot see us defeating it either. An appeal would be a very long winded affair with little chance of getting a reversal on the matter. Still, nothing lost except time.
Have been working on the final touches to the charity website. It is still in testing phase right now. I am also restricted by where it is hosted so cannot add some of the features I want to add which is frustrating! Just heard of another Northampton charity who have obtained a 4 figure grant for a site which, by all accounts, is not going to be a whole lot different. I just so hope my investment in to my CV pays off as I could end up rather bitter about all the work I do if I get no reward ultimately.
Pete is another year older and a special year this year too. Many happy other ones, love you Pete xxx
James now has a BMX and no doubt I shall shite bricks each time he goes out on it. All I have so far managed to achieve by way of a concession is that he puts brakes on it!
Next week is going to be busy for me as I have three training days Tues thru Thurs and then a meeting in Corby on Friday. I amongst those I also have at least one, possible two other evening meetings as well so I think I may just be right knackered by the end of the week.
I have just managed to write this with only 4 sneezes which, and you don’t need to know this, needed some considerable cleaning up … ewww.
There was a time when that was it, as complicated as it got and there were others to worry about periods beyond that. Indeed, to my young mind such moments in time beyond the here and now were incomprehensible.
Someone beyond 25 was just so far removed from my understanding of life experiences as to be part of ‘them’, the ‘everyone else’ who wasn’t young.
Then I hit teens and boundaries became confused. In my mind I was still 7 dreaming of childish things and wanting to do nothing real and everything imagined. A part of me was feeling pulled into an adult world, one where I would not fit in and where I would be the outsider.
The way others perceived me changed at this time to. I was expected to have an opinion on things I knew nothing about. I most certainly was, and this was clearly understood by the ‘old’ people, that I would contribute financially to the things to which I had grown accustomed to having others pay for. That little voice which wanted to be an adult got excited about the notion of paying my way whilst that other voice, the one I still very much was, couldn’t understand how this meant that I would also have to give something up.
My teens went before I really had a chance to adjust to them and certainly way before anyone suggested to me I should be enjoying them. Into my 20’s it became obvious, for me at least, that there was never going to be that time when I would stop being 7 and grow up. I was comfortable there and to this day, see no reason to make that leap.
Sure, I have learnt many things as I trundled hopelessly through life, some of them actually useful. Most though showed me that unless we are one of the fortunate ones of this planet, we will have to play our part and somehow try and conform or have a difficult and troubled life … well, sod conforming so it’s fairly obvious that difficult and troubled are apt words.
My observational and listening skills have enabled me to act rather well. It would appear that many of the people I meet really do believe I am all grown up. So good have I got at it that when I hear myself on television or radio I really don’t know the guy on there. He speaks with confidence and understanding. I could, were it not rather odd for me to think this way, rather admire that other me. He though only exists in the minds of those who choose to accept that is who I am. Many close to me will know that’s not me at all. I am 7 years old, I want to play with my cars. I want to watch John Noakes on Blue Peter and get excited every time a telephone rings. I want to do stupid things, I want to get dirty. I want to hold my mums hand, I want nan to make me her special chips, I want to watch sunbeams on the paddling pool. In my mind I do all those things, every day of my life.
As time passes though I am finding I am doing administration on my life. No longer it is what happened last week and what shall I do next… I have my childhood, my teens, that bit where I was married, going from one job to another and a large part as a carer and now this bit of coasting, creating for myself the tools I never thought were important as a kid to get through the remainder of life. I don’t think about next week, I plan, I plan for the whole year, and for the next and the one after that and when I can’t plan I dream.
If I ever get dementia, please let me go right back, let me be 7 again.
There was a time when that was it, as complicated as it got and there were others to worry about periods beyond that. Indeed, to my young mind such moments in time beyond the here and now were incomprehensible.
Someone beyond 25 was just so far removed from my understanding of life experiences as to be part of ‘them’, the ‘everyone else’ who wasn’t young.
Then I hit teens and boundaries became confused. In my mind I was still 7 dreaming of childish things and wanting to do nothing real and everything imagined. A part of me was feeling pulled into an adult world, one where I would not fit in and where I would be the outsider.
The way others perceived me changed at this time to. I was expected to have an opinion on things I knew nothing about. I most certainly was, and this was clearly understood by the ‘old’ people, that I would contribute financially to the things to which I had grown accustomed to having others pay for. That little voice which wanted to be an adult got excited about the notion of paying my way whilst that other voice, the one I still very much was, couldn’t understand how this meant that I would also have to give something up.
My teens went before I really had a chance to adjust to them and certainly way before anyone suggested to me I should be enjoying them. Into my 20’s it became obvious, for me at least, that there was never going to be that time when I would stop being 7 and grow up. I was comfortable there and to this day, see no reason to make that leap.
Sure, I have learnt many things as I trundled hopelessly through life, some of them actually useful. Most though showed me that unless we are one of the fortunate ones of this planet, we will have to play our part and somehow try and conform or have a difficult and troubled life … well, sod conforming so it’s fairly obvious that difficult and troubled are apt words.
My observational and listening skills have enabled me to act rather well. It would appear that many of the people I meet really do believe I am all grown up. So good have I got at it that when I hear myself on television or radio I really don’t know the guy on there. He speaks with confidence and understanding. I could, were it not rather odd for me to think this way, rather admire that other me. He though only exists in the minds of those who choose to accept that is who I am. Many close to me will know that’s not me at all. I am 7 years old, I want to play with my cars. I want to watch John Noakes on Blue Peter and get excited every time a telephone rings. I want to do stupid things, I want to get dirty. I want to hold my mums hand, I want nan to make me her special chips, I want to watch sunbeams on the paddling pool. In my mind I do all those things, every day of my life.
As time passes though I am finding I am doing administration on my life. No longer it is what happened last week and what shall I do next… I have my childhood, my teens, that bit where I was married, going from one job to another and a large part as a carer and now this bit of coasting, creating for myself the tools I never thought were important as a kid to get through the remainder of life. I don’t think about next week, I plan, I plan for the whole year, and for the next and the one after that and when I can’t plan I dream.
If I ever get dementia, please let me go right back, let me be 7 again.
This from my daughter - Daisy April is FND Awareness month & Autism Acceptance month. As someone who lives with both I wanted to raise...
